Yes, “girls don’t get autism” 🤦🏼♀️ Or adhd But here we are 🤷🏼♀️ But I was ‘bright’, an early talker, could read at 3, but boy did i struggle at school. Both academically and socially. And it didn’t really ever get much better. 1970’s kid.
It can’t be the changing lexicon of modern English and the emergent class of the emotionally needy having children and neglecting them in chains of generations
@@yarnbomber2166 it's 2024, my psychiatrist told me "you're empathetic, you can't be autistic". A few months later I looked it up and apparently autistic people can be hyper-empathetic...
@@arab6745 Yeah! That's a fact! Most humans Sleep for a third of their lives. I'm pushing another third just weeping over songs and charity commercials. Life in 2024 is friggin' EXHAUSTING! "Hell is other people." -- Sartre
I’m a teacher, we are NOT allowed to diagnose people. Can we tell you have it? 100%! We can see, but are not allowed to talk about it with parents. We can say observations we notice, and ask for the family to undergo testing, but if parents don’t realize the importance of following up, it never happens. I see so many children in school struggling, particularly girls.
As far as I'm aware that's the case across the world, though in some countries educators do make formal referrals. Even in places like the UK where our teachers can only recommend, not refer, educators are still often the first to notice signs that eventually lead to a neurodivergent diagnosis. Sadly that's mainly kids who cause problems to the educators or their classmates. Those of us who suffer in silence - the quiet and studious but no less confused & isolated ones - are still often missed by educators, parents & doctors alike until long into adulthood. I applaud anyone with the empathic reach and insight to be able to spot and give comfort to those of us still in that position. FWIW my own diagnosis back in the 80s came thanks to the intervention of a teacher.
To this day, even being diagnosed, people said to me "I don't understand why you are having so many problems, you are SO INTELLIGENT" and I just wanna punch something because *WHAT DOES THAT HAVE TO DO WITH ANYTHING?!*
I’m a female, born in 1975, raised in backwoods Georgia, USA. The only advice EVER RECEIVED was “just try harder.” Easier said than Autism and adhd can do… Diagnosed 8/2023.
@@karenpublic3391 1998, diagnosed with Autism and AdHd at three years old. Born and raised in northern Georgia. Your story is depressingly familiar 😞 congrats on the diagnosis and I hope you can recover someday.
Did you ever get this one? "You're trying too hard!" or "You're bringing it on yourself, you know." I got those a lot. I was diagnosed August 2023 too! I was born in 1978. A little younger.
Thanks for commenting & raising an important point. Race is a barrier to this day and it's a senseless as the attitudes that kept so many women in the dark.
Trigger warning, racism: I literally had a mother of a kid in our school tell me that her doctor refused to diagnose her son, saying he can't be ASD because he's black. She said, "maybe it's his white side?" _Which no parent should ever have to say ever._ Ever. I was nauseous. I still have a hard time believing what I heard - not that I heard it, but that anyone could believe such nonsense as to apply such a falsity to _medical care._ (He was not a "bad" kid. He was just not the model "obedient" kid they demanded - likely due to inertia and social power dynamics.)
Race and gender and native language and socioeconomic class are major predictors of missing out on the opportunities to benefit from medical knowledge.
I had all the opportunities for diagnosis but was seriously mislabeled and harmed by atrocious therapy's (Martha Welsh,) Was told I had an IQ of around eighty in the third grade despite reading at around a ninth grade level. I'm 41 I was diagnosed around 5 years ago. Anyone else from the eighties relate?
I am 55 years old. I was diagnosed with Aspergers in the 4th grade but my parents did not tell me. I only know because a therapist thought I might be Autistic. I went on Facebook and read entries from a Parent of Autistic children group. Their stories about their children sounded a lot like my childhood. I told some of my friend and none of them were surprised. I told one of my cousins and she told me I was diagnosed with Asperger's in elementary school. I think my parents did me disservice because I constantly wanted to commit suicide because I was not fitting in and could not understand why.
I haven't been diagnosed yet, but I strongly suspect it, and so do my peers and friends. Every time I brought it up to my family I was told "NOOO you're normal, there's nothing wrong with you!" meanwhile I would get yelled at and asked why I'm not normal and what's wrong with me. So confusing. People are so irrational and weird. I don't understand why we can't just see an issue, investigate, and then find a solution without a bunch of drama, lies, and agony.
I am 56. In the era we grew up your parents probably believed they were doing you a favor by not attaching a label to you that would other you. The stigma around conditions like autism is still bad, but was even worse back when we were growing up. My cousin was diagnosed with autism in the early 1970s. No one in our family knew until we were all teenagers, and my uncle only told me because he believed he had cured my cousin.
The first I ever heard of autism, was my mother explaining to me why I wasn’t vaccinated. She made it sound so horrible! Well, jokes on her, becaus we are definitely BOTH autistic 🎉
@@martinkaczynski8526there is no scientific correlation between vaccines and autism. Autism usually presents at about 2.5 years of age, at a time when people are also getting vaccines. I received 5 vaccines before starting school in 1964. None of them contained thimerosal. I started exhibiting characteristics of autism right on time at age 2 1/2. The reason there are more autistic children now is twofold: >Children whose autism is genetic (I would argue that that's all of them) are surviving birth and early childhood, which they wouldn't have even when I was born. >And clinicians are getting better at diagnosing children. When I was in school autism was considered very rare, and the people who would now be diagnosed as autistic were instead called "retarded." We've come a long way, baby.
I argued when they said my son was autistic. I said, sarcastically, "Well if he's autistic, so am I, because I was the same as him". That's when I first started to understand why being 'the best at reading books' wasn't a family gift passed down from my mother.
Lol that's what my mom said to me aswell when I was diagnosed in my 30s 😂 I sus she is aswell. It was her books on body language and other esotheric stuff on how to read ppl that I devoured when I was a kid!! Medical books, ency clopedias, always tried to understand others. Like my mom. Yet I was never understood
As my son was getting diagnosed, my dad said to me something like, “He’s ok. He acts just like you when you were a kid.” He thought I just matured, but in fact got really good at masking. Just a few days ago I told my dad I was diagnosed Autistic last year. I could literally see on his face a paradigm bubble pop, like so much he thought he knew is incorrect. Btw my dad is a great dad and growing up in the 80s, everyone was ignorant of ASD. I’m glad I am able to understand my son and hopefully help others understand Autism better.
I sucked my thumb until the 4th grade, skipped everywhere, carried my schoolbooks on my head, and couldn't properly socialize with other kids, was constantly beat up, and was sent to a special school bc i couldnt mainstream. Finally diagnosed at age 49!
I was shamed by my family into stopping sucking my thumb when I was 6 or 7, but still had the callous on it until I was in my 20's. Taught myself piano by ear and never had more than one close friend. All of it recognized by my family with a simple "What a smart boy" or "He's so shy". Autistic meltdown was categorized as sleepwalking or me being overly sensitive and dramatic for attention. It's a long hard road but it is nice to know that others have gone on it further than I have and survived.
😢 Sounds a lot like me. I skipped 2nd and 4th grades, was bullied at school, was a wallflower at any team games or dances, and my parents got together to consider with me whether I should go to a special school but we never made up our minds to actually do it.
@@tomhchappell I faced the "special school" dilemma shortly after my diagnosis in the 80s. In my case it was deployed as a threat. "Behave differently or we'll send you to the nasty, scary school where all the naughty boys go". Being typically autistic, given a choice of 'A' or 'B' I chose 'C' and... here we are today😂
Quinn, please contact the suicide loss groups and suicide prevention people. These UA-cam videos have made it crystal clear to me that my friend who took his life was autistic. Survivors deserve to know. Teachers, pastors, medical doctors, cops and suicide hotlines need to understand this risk.
They know already. It's widely known that autistic folks are at far higher risk of not only attempting but succeeding, than our allistic peers. It's not lack of knowledge but lack of will, of empathy or of resource that gets in the way, sometimes all 3.
@@Autistamatic I never heard it from Talk Saves Lives or SOSL Survivors of Suicide Loss. It should be a talking point on Crisis Lines, and would help survivors with their GUILT. I’m retired.
My friend Sam was autistic. He took his life because he lost funding for housing and had to move back in with his parents at age 26. His parents treated him like a child despite the fact that he'd been living independently and working just fine with some support from the local disability services. Infantilizing autistic people makes them less likely to seek out support.
It's too bad, that the World use(d) *punishment* to _deal with us_ and our unknown condition, but offer NO FORGIVENESS even after learning about its existence.
And alarmingly now it seems that they're on a mission to perfect in-utero testing to eliminate us before we're even born. Who is coming up with these ideas?
Exactly. That's why I'm AFRAID of society now. After my last major burn out I quit making effort to tolerate it when an NT is rude or strange at me. I'm so done!
@@raven4090 It's a product of the ego driven Alpha-Beta hive mind, dismissing brilliance in deference to normalcy. And normalcy is the height of Mediocrity. Safe, dependable and comfortable Mediocrity. Most of history's most revered and admired figures were "anti" just about all things Social, preferring instead to focus their minds and energies to scholarly pursuits, either alone or with a single acolyte to assist. The masses are a living, breathing metastasis of Judgement and Hypocrisy. Solitude has certainly been good to me, but we are still human and need to be loved, 🎶"Just like everybody else does."🎶 That said, interpersonal relationships have never been more strained or more DANGEROUS than they are in 2024. "Society" was just another utopian delusion designed to empower the Violent over the Coward and keep them in check with those _"champagne wishes and caviar dreams."_ Be you and live your best life, but while shedding the Pain don't deny yourself the Joys that can only come from vulnerability and surrender to the RIGHT "Soul."
Not only ignorance, but my parents were both struggling with their own depression and problems, and most likely were neurodivergent as well. That might be the case for many other late diagnosed autistics. Frankly, I blame my teachers and school staff a lot more than I blame my parents. My parents probably saw our traits and thought they were normal because that's what their own childhoods were like. As for advocacy, I can only thank creators like you for helping me not feel ashamed or scared or hopeless about my diagnosis. Seeing autistic people being so open and honest and sometimes even proud about their autism makes me feel less embarrassed, stronger, and more patient with myself. I'm even making art and comics about my own experiences now. Thank you!
It seems probable to me that my father may have had ASD or ADHD or both. My mother was depressed, and two (me and my late older sister) of her four children are or were depressed. Both parents were very systematic in their thinking. Up until now, as far as I know, that’s the best predictor of an increased chance for a child of neurotypical parents to be autistic.
Yes, the notion that kids are perfectly "normal" because they bahave like their parents, who don't realise that they themselves are perhaps neurodivergent. Learning what Autism is certainly makes certain family situations and ways of being make more sense that they did at the time! In exchanging with other autistic youtube creators, I get the impression that for some of them at least, producing content and sharing it with others on here helps them themselves as well as clearly helping the people watching. It's a way of expressing ourselves to an audience who for the most part are there because they care and are genuinely interested. Perhaps youtube is a way to be able to speak to people who want to listen, even if it's not face to face and in real time. It's a way around the awkwardness of having stuff to say but no-one who seems to want to listen. I think perhaps that's something many of us can relate to? Art, in its mant forms, is a fantastic way of expressing oneself. Music is my thing, but I imagine you're able to get things out of your head and explore them with your artwork and comic making. I'm learning about song writing and music composition and it just makes me feel alive when I play music. Currently there aren't many things which feel like that for me. I hope your art does that for you. Perhaps one day you might want to make some videos for youtube yourself and talk about/show/teach others how art can be a life tonic and help them sort through their thoughts and feelings to get to a better place?
My dad is definitely autistic. It’s sad because he will probably never get that understanding about himself. I’m discovering this at a time when he’s already been a hermit that shut us all out for over 30 years. 😢 I wonder what his life would have been like if he could have discovered this for himself much earlier on. Would it have made his life better or worse? 🤷♀️
We have a very similar situation with our son as well. ❤ Honestly I would know absolutely nothing without these videos! Glad to hear it helps you too. I believe my son is embarrassed or doesn’t want to believe it either. We’re still trying to get him properly diagnosed… it’s been rough!
before i got diagnosed by a doctor, or recognized by my parents, a random stranger on tumblr diagnosed me as an aspie. :] i made a lengthy vent post on my blog about my life long struggles with communication, self harm, school, and retaining/following instructions and they told me i should look into signs of autism in girls! matched me to a T. though my mom denied it, but a few years later i had the papers to prove it. Lol the strange thing is that- *A.* apparently my older sister (who basically raised me) had been pointing out that i had textbook development differences and difficulties since i was a BABY and should be tested, but my parents ignored her since she was a teen and there was "nothing wrong" with me. and *B.* the moment my diagnosis became public, every aunt and uncle came out of the woodworks to admit they "had a feeling"! it's so frustrating that autism is such a taboo topic that adults would rather watch a child struggle with a lack of understanding of the world & themselves than be the one to break the "bad news" that they're just different and need support.
I learned recently, from my mother, that my younger sister had soken to her about me maybe being autistic over 25 years ago (I'm now 47 and have recently learned what autism is and am on a waiting list for evaluation). My sister had been stufying psychology at sixth-form and came home saying to my mum that she thought I was autistic. Neither of them said anything to me however! If either of them had, I could have been diagnosed 25 years ago!! And not had to go through 25 years of wondering what on earth is wrong. And yes, taboos and family secrets, frustrating. My mum, when I told her I thought I was autistic, apart from telling me my sister had wondered that 25 years ago, said she thought I was perfectly "normal" because I was like her (!) in that I didn't fit in, I had very few friends, I liked to do my own thing, I kept myself to myself.... She won't entertain the idea that she too might be autistic. Taboo/pride I don't know. But the conversation is not worth having. If she's not curious, that's up to her. And you know, it was only after I told her I believe I'm autistic and am going for an assessment (I only told her because I wanted her to fill out a parents' questionnaire) that she decided to tell me that I can't be because I'm perfectly "normal". She had spent the previous 45 years telling me I'm "weird" and "not normal", that she wished I could have been more normal! It's sometimes unbelieveable what other people can come out with. Even people who theoretically are supposed to be there to be supportive and caring, kind even. I hope your new found self-understanding has helped you.
Before there was a label, my friend was sent to a residential school and suffered horrific abuse! At the time the ignorance was rampant and there was no internet for support. I know if I had been given a diagnosis as a kid, I would have hated myself even more than I already did.
@@matthewbucktrout3291 I think there is a denial that parents go to because they feel ashamed they missed things as a parent, which they take as a failure of doing their parental duties. And society as a whole does purport that and willingly points the finger of blame at them. I am saying often in the comments here on YT that noone knew this stuff back then, in the 1970's. So, I try to get people to be more understanding and compassionate. Our own son was diagnosed at 17 with mild autism, and I was saying, "How does a parent go seventeen years and not know their son is autistic?" It could have been devastating had I let it. Remembering clues and then realizing, yeah, I should have known something was up. It did lead to my own diagnosis, so, with that information, it does lessen the blow. And he is "mild" so it is understandable after thinking about it. My experience was only with more "severe" cases. Now I see it all over the place and believe it is highly possible 1/3 of the earth's population is on the spectrum and it IS more "normal" than we think or want to believe. As more and more of us come out of the woodwork and the masking continues to stop, I believe what I say will be more evident. Time will tell.
Actually my back then boyfriend told me in 1988 that I am autistic. We had just watched the movie Rainman in the Theater together. I was highly offended and dismissed it for the next 30 years, until my daughter read the DMS 5 and selfdiagnosed herself as autistic. She wanted me to confirm her view on herself by reading the questions to me. And all the while I was like: "Hey wait, that is me!"
Thank you for discussing this! This is something I think about a lot. As a child, I was minimally verbal (did not become fully verbal until my 20s), suffered from chronic pain due to sensory overwhelm, cried basically daily, did not have any real friends until I transferred to public school and met diagnosed autistic classmates, etc etc. I know my parents believe autism doesn't exist, but I often can't help but wonder what my pediatrician and elementary school teachers thought. Were they simply uneducated? Did they dismiss it because I'm a girl or because I was smart? How many people noticed, but thought it would do me more harm than good to receive a diagnosis? Ultimately, it doesn't matter, but I often think back to that little girl, struggling and suffering without accomodation, and wonder what justification each person had for refusing me proper care and accomodations.
There’s a risk of suicidal behavior, and this is why I will not tell my 30 year old son that I suspect he is autistic. Instead I will bring it up and talk around it.
@@you-tube-user-minimal If he already have suicidal behavor/thougts, I can imagine that being told he could be autistic, would save his life. It will give him so many explanations of things in his life. Otherwise, it is probable that the suicidad behavior/thougts continue until he succeds. I would definetilly try for him to know.
@@you-tube-user-minimal The label of autistic will not worsen someone's situation, not knowing the truth is much worse. Not knowing why you feel the way you do, why your life is the way it is, why you struggle in almost every aspect of life compared to everyone else blasting past you. The reality of intense struggle autistic people face is what shortens our lifespans, makes us more susceptible to suicide, makes us feel like freaks that nobody will ever understand. If you can't even understand yourself, how could you expect others to? This will exist with or without labels, the label can help you find resources and friends and a support network which every single human being needs to be happy.
I’ve noticed that all psychological issues are slapped with the word ‘disorder’. In comparison, we just have names for most physical health issues. ‘Diabetes’ not ‘diabetes disorder’; ‘cancer’ not ‘cancer disorder’, ‘myopia’ not ‘myopia disorder’… Hmmm.
Exactly 👍 I could draw realistic art before the age of 13 due to having synesthesia of sight and touch. When I look at the world I automatically pick up on distance/scale masurements, it's like having an seemingly infinite amount of hands constantly "feeling out" form and depth (it's extremely tough to explain but that's my best analogy at present). I'm also a "super recognizer" (always thought it was a goofy descriptor) and have memorized several piano pieces by finger placement alone without any piano training. Can also identify anyone based on their body movements, even celebrities that I've only seen in a film once. Also learned English from zero in a few months and could sound indistinguishable from native speakers accent-wise another couple of months later. On the other hand, I can be quite clumsy in social scenarios and can potentially suffer from devastating panic attacks in large gatherings, probably from my brain attempting to analyze my surroundings in ways related to the phenomena above. Currently pursuing an expert examination for ASD because I simply have no other explanation for my way of existing and having these Savant-like predispositions. Also, I think it quite telling and "Autistic-like" to state these facts even though neurotypicals would immediately perceive them as bragging or narcissism. Not many people realize the enormous toll these "gifts" have on our mental bandwidth and emotional health. They love to reap the benefits of our condition and call it "God-given", "miraculous" etc. but give the opposite treatment to the other side of the coin when in fact it is all part of the same individual and their struggles growing up in a world so seemingly incompatible with their neurological makeup.
@@catlifechannel3886Yup. Remember, homosexuality was considered a medically valid "disorder" up to a few decades ago. However, there's no "Vacuous Personality Disorder" or "Tribalistic-Hysteric Social-Merging Disorder" because a large amount of those traits are socially acceptable and even encouraged. Only in the most severe cases that disrupt the established order does the prevalence of those characteristics prompt psychiatric attention.
@@brianfoster4434 This idea has been proposed before, by people with more authority and better credentials than most of us on this thread have. I’m starting to shift my thinking on this to “probably” instead of “maybe”. Society needs neurodivergent people. I hope someone (including but not limited to some of us) starts being effective about changing this aspect of our society. I probably won’t see it in my lifetime, but that’s because I probably have fewer than 18 (although probably more than 8) years left.
I also think it shouldn't be called a "disability" or a "handicap." It's just an alternate method of processing. I have trouble with nuance, sure. The allists I interact with probably don't understand math, but they're not "handicapped." 🤷
When I discovered that I was probably Autistic 7 years ago (on turning 60) and I told a friend that I was applying to get diagnosed, they said they already knew!!! I was flabbergasted and asked if they knew why didn't they tell me? So many of us Boomers were totally ignored or told we were difficult at school. I didn't think I was difficult, I was just bored. I was able to read before I started primary school at 5. I remember telling the teacher that I found their Janet & John books really boring and could I have something that was more interesting. Luckily, I used to pass a library on the way to & from school so I used to stop off there on the way home and read for hours. I found maths harder to understand because no one would explain how the relationship between maths and the relevance to everything in life was intermingled. I was a lot older before I found out about this. Had I known this when I was younger I may have had more interest in maths. My parents used to say I born asking the question why? But no one would actually explain anything to me. So, I have spent most of my life teaching myself.
Hey, you could have been writing about me, apart from I loved maths. What about the SMELL of Janet and John books though? I can't remember the stories, but the smell, I can almost smel it right now just thinking about it. Opening the book and sticking my nose right in to the spine and sucking in lungfulls throug my nose. Mmmm. Hooray for teaching ourselves stuff, at least then we get to learning interesting stuff and in as much depth as we like in the way that makes sense to us! Hope you get your diagnosis soon if you haven't done it aready. i'm currently on a waiting list and I really, really want it to be my turn, like last week.
Wow, I definitely relate to not getting maths because no one bothered to explain why this abstract stuff was relevant to anything in the real world! I loved geometry and excelled at trigonometry. Algebra however seemed abracadabra, totally incomprehensible to me - until the same equations came up in economics classes and I had no trouble at all working them out. The teaching method failed me, and no doubt many others, and I thought it was my personal failure - that I wasn’t smart enough. It’s taken decades for me to understand that I’m actually pretty good at maths 😢
I was born 1995, diagnosed 2019. My mother; born 1965, diagnosed 2022. My brother; born 1998 and diagnosed 2003. My son; born 2016, diagnosed 2024. It's not only your age, but also your sex that influences your liklihood of receiving a proper diagnosis.
While not having a social media presence, I have elected to be visible about my AudHD in my work environment and have spoken frankly about it in group social online events. Going without a diagnosis for over 50 years was a struggle, but I've also learnt from coming out as a gay man over and over again, that advocacy never stops and you need to give people a real face and human story to learn from. Some of my colleagues have non-verbal autistic children and I believe really appreciate those of us trying to pitch a flag on a new continent of rational acceptance and compassion. That is where they hope their children will live.
Thsnk you for sharing. I also disclose at work which has helped my career. My coworkers understand and play off my skills and they support the accomodations I need. I teach my autistic kids to accept themselves. The world's "better place" is improving because of disclosure and advocacy.
@@iluvyunie It's the same with everyone. All kinds of people can be exploited by the rich. But not everyone of us can handle the stress. That doesn't make us any less. For rich people, neurotypical people are the easiest to exploit because most things are already good enough for them. Autistic people who can focus rather well on their job, especially of they are not too outspoken about potential corruption (if there are any in their workplace) is also exploited. Especially if they are more oblivious to certain things. I'm just taking an another perspective here, which is why I mention exploitation more than work. Because in some ways it is.
I am so obviously autistic that its unreal that it took until I was 62 to be diagnosed by a psychiatrist. This was just before Covid and I'm 66 now and although he took me through all the Autism 50 and DSM criteria, I am still awaiting my formal assessment. My dad, definitely his brother and 3 male cousins on my dad's side were all autistic and diagnosed (the cousins) young as they were boys and were more impacted than I was. I was just the painfully shy little girl who didn't like other little girls and would rather be with animals or have my face in a book. Its quite distressing as it caused a fair bit of actual physical abuse at primary school and many other things that made me feel "other" and "unwanted" the description "cold and detached" was one I got thrown at me my whole life and I often wonder if my parents would have seen me differently had I been diagnosed like my male cousins. Not likely though it was the 1960s and they seemed to think it was somehow sex linked. Its frustrating but I'm so glad I know why I am the way I am, so tied to routines, socially anxious and almost anti social, in that I prefer my own company or that of animals and don't want people, apart from maybe one or two others in my personal space. Relationships have always been strained as I was always being accused of coldness and disinterest. I can however live with people if they are like me, in that they respect my boundaries and don't need to be in my face 24/7. My partner now, although undiagnosed would surprise me if he was found not to be on the spectrum as he likes his own space and we get on fine, albeit in 2 different rooms except for mealtimes. Lol! Theres obviously some sensory issues, especially loud sharp noises that I cant stand and having to have clothes without tags, just printed labels on the inside of the actual garments. Theres stimming, which I thought was just something I did whilst waiting or talking to people. But the "otherness" and alien-ness and not wanting to communicate with girls my age, boys were somewhat easier but any social intercourse was harrowing. Thanks for this as its explaining why I slipped through, I really think you are correct about age being the main thing.
I’m 63 years old and relieved to understand the basis of the 24/7 struggle. So many years lost spent on therapists, who never ever suggested Autism. Damn the professionals!
Born 1958, diagnosed last year with ADHD and autism spectrum disorder. They run in my family but I did not know until recently. It is hard to explain to people why I was not diagnosed in childhood when my symptoms were very clear. They do not understand what masking is and how well persons with a high IQ can mask. But masking helps only to avoid bullying and censure and social isolation. It is costly: depression, anxiety, eating disorders, panic attacks. All kinds of mistakes, tensions and troubles one does not really know where they come from. Feelings of alienation and loneliness that nobody understands. Until one gets the diagnosis. That is why I got it - finally.
Even as an adult my diagnosis was delayed by the "kindness/stigma" issue. Finally figured it out for myself this year (officially diagnosed last week at age 38), and when I mentioned the idea to my mom, she said "oh yeah your aunt and I have suspected that for at least a decade". For the duration of that decade I've been unemployed and struggling with fatigue and mental health issues (probably including autistic burnout), so thanks for keeping that potentially crucial information from me.
As a highly intelligent AFAB person born in 1988, I didn't stand a chance of getting an early diagnosis, despite definitely showing clear signs throughout my childhood. I'm glad I know about it now, though, because it has really helped me understand myself.
I am autistic, I was born in 89. I wasn't diagnosed until I was in my 30s. My grandmother (I spent most of my life living with her) told everyone that I'm not autistic I'm just retarded and emotionally disturbed. It wasn't until my 30s that people started to take my thoughts about being autistic seriously. What was my grandmother's reason why she thought I wasn't autistic, you might ask? I talk. And as a kid I talked a lot. Turns out it's normal for autistic children, especially when talking about special interests. I would obsessively talk about these things.
I’m 21. I wouldn’t have been diagnosed had psychology not been my special interest. In February of last year, I happened to be reading up on the female presentations of autism. Then it all clicked. I read book after book. Got myself an assessment. Lo and behold… I was right. So in a way, my autism saved me?
In the late 1950s, my kindergarten teacher wrote in my report card that I was "aloof". My late teens through early 20s was horrible. No ability to 'adult'. For decades I would say that I must have been clinically insane during those years. I also felt there was no way for it to have been different. About 5 years ago, at 65, I got a diagnosis of ASD and ADHD. Now I understand that I wasn't crazy. I was undiagnosed and unsupported autistic.
Thank you for discussing how age has a lot to do with whether or not you even had a chance of being diagnosed. I have 2 sons. One is 24 and born in 2000, the other 17 and born in 2006. The eldest only even got an ADHD diagnosis even though he is a textbook case of autism. The youngest went in for school accommodations and walked out with an autism diagnosis. Just that 6 to 7 year difference in age made a huge difference in diagnosis and accommodations. Gen X and previous generations never had a chance.
I sometimes wonder if I would've been diagnosed at school if my mum didn't fight against the school saying that there was something wrong with me. She worked at the school I went too and from recent conversations it was causing issues with her job because the teachers was always complaining about me to her and my mum eventually made me move schools and my life fell apart after changing my school to an environment that was drastically different. Plus I no longer had my mum at school. I was seriously bullied in my 2nd primary school but I kept quiet up until the police got involved (something seriously bad eventually happened in my 2nd primary school involving an incident of sexual abuse from two brothers who bullied me, I think looking back the abuse was almost like gay shaming). I tried to stay quiet about it because I was scared that it would upset my mum, plus I never knew being gay was "wrong" until that happened (which it isn't!). The police asked me if I wanted to talk to them without my parents present and I said yes and told them everything. They recommended to my parents moving me from that school and told them I was being seriously bullied, in my 3rd primary school it was a Christian school and the kids was actually nice there. My paranoia and distrust of people from my 2nd primary school never disappeared though, plus the hysteria caused by me being "gay" that made all of my "friends" shun me. Through the remainder of my time in school I was always scared that if anybody ever found out I was gay my world would fall apart again and I would loose the friends I struggled to make. It also never helped that the brothers family was investigated by social services and they almost made it their job to destroy my life.
I was born in 1983. Was told repeatedly by adults (teachers, family, family friends, etc) that I was weird, unsocial, hypersensitive and many other things, and that I had to "adapt", to "fix myself". Now that I've been oficially diagnosed (last year), people tell me I'm just seeking attention and dismiss me. So yeah.
IMHO much more important than being accepted by society for us is to accept ourselves. Diagnosis can help with that, but it will not help with the negative feelings NTs get in our presence.
Ignorance is a huge one. I'd never thought about it until my therapist suggested it, mainly because I had my own ignornt ideas about autism. Thanks to you and others, I am less ignorant. Even though there are a couple of studies which contend that the incidence of autism in people with certain congenital blindnesses such as rubella, ROP or Leber's Optic Atrophy, similarities get passed of to the blindness and ignored. I'm extremely curious about what my assessor is going to unearth hwen I finally get to see her. I'm expecting every reaction from none to horror, having already received the latter from someone whom I thought was a dear friend but who did not take kindly to my calling out her ignorance. Keep in shining. 👏👏
A myth for all born before about 1983. Many also forget that physical punishment of children was the norm before then so the downside was greater than just lack of diagnosis.
@@51elephantchang the good old days when everybody pretended to be normal? I can imagine food allergy deaths was put down to something like "choked to death on food". When I had my first reaction to nuts it felt very much like I had something stuck in my throat. I've heard people say that people didn't have allergies in "the good old days". I can imagine it was more "ignorance of" rather then "lack of". I've experienced people believing I'm just being awkward when I ask about ingredients, I even had an argument about a homemade cake containing nuts while having a reaction with them insisting "it definitely doesn't have nuts in!" acting like I'm being crazy for having a reaction. I dread to imagine what it was like "in the good old days".
It might be that the autistic person is usually not the only autistic person in the family. Therefore, it appears somewhat ordinary to all those who might care. Also, I have a theory that autistic people are drawn to other autistic people for companionship. Also, the autistic approach to life may have never been the dominant one so it's not in the interest of the dominant paradigm to draw attention to the fact that a lot of us are deranged by it. For parents that are finding they are taking their kids for medical tests where there appears to be no definitive result - try autism. Strange circulatory problems. Eyesight issues that aren't explained by the standard eye tests. Alarming double jointedness. A child that keeps damaging themselves by sitting too close to radiators or scrubbing the skin off their legs with the pumice stone you told them to use. Vomiting or loss of consciousness when exposed to certain perfumes/products. Colic long after babyhood. It's not just them being a bit special.
I’m approaching 70. I discovered I’m autistic about three years ago. That actually made everything worse, because it all but destroyed the ‘false ego’ and personal narratives I had created to cope with the bewildering communication problem. Sure, I was fooling myself, but I was also maintaining some hope for positive outcomes. It also crushed my hopes and plans, as it seemed to imply that there was no way I could ‘adjust’ my style to resolve those issues - because it is much deeper than just a behavioural style. I have isolated myself completely, to avoid the problems and misunderstandings, which is killing me - possibly literally. What to do ? I don’t know. I don’t trust anyone at all anymore. Which is even worse than fooling myself that things are OK, or getting better. Waking up in the morning is now a huge disappointment. Every day. I don’t even want to relate to people who seem to like me, because I realised was a sitting duck for the manipulative narcissists who had made my life a misery by using and then discarding me. Any suggestions ?
A neurodivergent counselor who specializes in late autism diagnosis, coping mechanisms, depression, C-PTSD, autistic burn-out and IFS (internal family systems) therapy. Also look into ketamine treatment, and or shrooms. Check out online support groups that can be offered through the Arc. Keep educating yourself about who you are as an autistic individual through watching videos such as this and reading comments. Finding and creating community, even if it's through a Zoom meeting with your camera off, is comforting in knowing that what you're struggling with is real, valid and your suffering is due to how society is flawed as you are not.
Contact autism charities, they can help a lot and maybe see if they can help you find an autism group to support you and find people who will understand you. Good luck!
@@minacarolina7671 Thanks. I’ve very recently kind of adopted a neighbour’s cat, which is ultimate autistic support and the best company. The neighbour is quite happy bout it too, because I can look after the cat while he’s away. I’m not being at all flippant btw. I have excellent relationships with cats.
i requested my evaluation in the hopes that i could get some aid where i have trouble "dealing with reality." but on the way to meet the psychologist to get the official result i realized it would be one of two things... 1: i was autistic, and could not be "fixed" 2: i wasn't autistic, i was just really ***ed up, and had to face a long, daunting road ahead of trying to work through years (i expected) of therapy. (and at this age, who has time for that? i could be dead before i get through it :X ) but i'm glad i fell on the autistic side. i haven't gotten any aid yet (that process itself is brutal), but just knowing and understanding has helped me be able to cope more. you may find, like i did, that researching autism and reading about it can give you insights into how to help yourself. my psychologist recommended "The Autistic Brain: Thinking Across the Spectrum" by temple grandin (she has a bunch). and i want to point out to you something she points out emphatically in this book... instead of focusing on what austics can't do, focus on what you CAN do. maybe i can't give a TED talk, but i can certainly write a blog. (actually... im terrible at keeping up with blogs. but as an example!) she also recommended "Neurotribes," but i think you should avoid that one, as it was VERY depressing. if you can find it at a library, maybe just read the last chapter, because that was good. also good is "Self-Care for Autistic People" which covers many aspects of life (relationships, jobs, and general physical and emotional health). if you have discord, there are autistic interest groups. ASDirect is one i belong to. just chatting and meeting with other people like you is SO much of a relief, i can't even explain it. i talk online more with my friends and all, but they don't 'get it' the way other autistics get it. were you also diagnosed with co-morbidities? those are things that can/could be "fixed" or alleviated. i'm tackling my social anxiety, and learning about more problems like emotional backdraft and fawn response, which i struggle mightily with. as for depression, that was no big surprise, i've been living with that forever. important rule: never, EVER, make life-altering decisions while depressed. i believe you can come to terms with things and have a good life. i've been trying to 'fix' myself for decades, but now i can see other ways of dealing with things, that will actually work for me. you could, too.
My mother knew I was autistic, but didn't get me tested as she was on the run from social services. She told social services that I was outwith parental control (with-holding anything about suspected autism) and I was put into a residential school. She would rather wrongly tell everybody that my autism was mental health problems to get out of accountability.
"He's just shy" -my mom. She didn't have bad intentions, she most likely didn't know, but she made me hide it until I failed at school and at life. THX MOM🎉
Fantastic video. I type one handed as I am mixing a cup of cornstarch with half a cup strawberry conditioner to make moon dough. It’s 10:30 pm. I am in a nearly dark kitchen. Our 4th daughter I KNEW at age one. Dr sent for evaluation at age 2. We were waitlisted years. She was DX anxiety & ADHD at age 8. I requested again at 11. She was DX just before 16th bday. She always homeschooled. Even w gifted IQ we knew she could not handle a crowded public school outside Orlando, FL. I realized after her DX asked asked me questions that she thought I should be assessed. I am trying at age 46 to find someone to test me. We have PPO insurance. I have spent 25 of 28 yrs as SAHM. I am SO clearly what was once Asperger’s. But masking& skills I was taught can make it hard to know how badly I struggle most days.
I'm 56 and I was only just assessed for autism at UCLA last fall despite being diagnosed as having a mild learning disability with a high IQ in 1973. For most of my life I, and apparently most other people, assumed I was merely a high-functioning weirdo rather than Level 1 autistic. After going through the clinical assessment and processing the news for the last nine months, I've come back to the self-perception of being the high-functioning weirdo like always. I'm okay with that. The only thing I've consciously worked on is reducing my habit of over-explaining things to others. (and I recognize that I've rather failed at doing that here)
Hi Quinn, just found your channel. I am a 51 year old female and am just going through a diagnosis assessment for autism. I have struggled for years and now finally realise why life has been so hard. I have masked and tried to fit in but it took a toll with anxiety, depression and CPTSD. I am so grateful for people like yourself sharing video's like these to help people like me who are just learning about the full impact that being undiagnosed has caused in their lives. I enjoyed your fact filled vlog and the 80's tv/music references made me smile. 😊I look forward to binge watching some more of your videos.👍
I'm slightly younger - on the younger side of the millennial group - and I was diagnosed last year, at 30. Part of the reason autism as a diagnosis has been applied to more people is that the definition has expanded - rather than the rather restricted view of autism from the 1940s, there *is* now that broad spectrum of autism conditions, and there's recognition that what was called Asperger's syndrome is, in fact, an autism spectrum condition. Part of the reason for the stigma is overgeneralisation and conflation - there's an assumption that autistic people are universally the highest-support-needs cases that some autism charities like to point to when they're doing their fundraising, who typically also have what are sometimes called intellectual disabilities, and that assumption does lead to one thing that some autistic people report getting quite a lot of: "You can't be autistic, you're too smart". I did quite well in school, and that fact probably meant that the tests that might have picked up on it were never applied to me. As for family, the signs were there - a lot of my parents and grandparents were early readers, as was I, a trait common in autistic children. Of course, *because* so many of my close family was probably autistic, the way I presented was just... normal, to them; the idea that my learning to read before entering school and reading at a significantly higher level than most of my classmates was indicative of a neurodevelopmental condition rather than simply being me doing well at academics would have been, understandably, something hard to fathom. So, yes, stigma and lack of recognition would have played a part, but I think it's also important to recognise the environment *around* the person.
Similar age and story to you. Dunno if it's similar for you but in my area there is also this weird stigma lately that "everybody wants to to be neurodivergent" as if we're all just making it up in order to feel special, or maybe feel validated for not fitting in? I dunno but as long as people are gonna jump to conclusions it's always gonna be a bit of a gamble to "come out"
@@benja_mint people who think that people are making it up haven't thought deep enough. Why would I want a label of something so misrepresented and stigmatized if it didn't somehow explain how I already felt? Discrimination is a result of short-cut reasoning; its sadly still pretty common.
Born in 1971 Uk. I hated school especially primary school. I had a breakdown when I was about 6 or 7 and depressed all the way through. I had to see a specialist person who was a psychiatrist, with no explanation at all. So called out infront of class to go. This happened into my secondary school. I got put on a thick table and also made to sit on my own. I hated the noise of school, the interaction and everything. Being told I was stupid, thick, disruptive, told to pull my socks up and get on with it and only interested in the things I liked. I got diagnosed in 2019 with Autism and 2022 with ADHD as my Autism assessor noticed signs of ADHD with me too. I'm glad for diagnosis as it made realise that I wasn't thick, lazy or difficult. Infact I was trying harder and putting more effort in probably more than most.
That's funny you bring up Rainman. I remember watching that movie and realizing I had a touch of that. I was 11 or 12 at the time. Really helped dodge the diagnosis until I was ready, 30 plus years later lol.
I met somebody who was diagnosed with autism when I was about 15 years old and realised they was very much like me. I didn't realise at the time that masking was a thing and often gaslite my own feelings so never really processed my own feelings. At the time I just told myself that I was making up excuses not to follow all these stupid social rules but I could never forget what I had discovered, I did allot of research from that time and talked to a doctor when I was around 19 to get a diagnosis. I did get referred to a psychologist but also got sent to a councillor, I did 2 sessions with the councillor and was so stressed out from the experience and couldn't deal with it so I just dropped the whole thing and didn't see the psychologist. I'm 32 now and I'm finally on the waiting list to see a specialist. It seems like the understanding around autism has improved allot since then. Hopefully I haven't been wrong for 17 years 😅
Entered school '83 in Germany. Back then, they obviously recognized when you had issues. But they would first try to make you conform well enough to somehow survive school before diagnosing you with anything. So if you were not one specific phenotype, you wouldn't be found and would somehow go on blundering through life. Another factor: The parents of us back then grew up with the mindset of: "Are you calling me crazy?" Especially in Germany, after what the Ns did, you can probably understand why people had a strong incentive to try staying out of the medical system - and keeping their kids out as well. Now I'm 47, and I'm getting suspicious results on all the available tests on the web ... Makes you wonder.
Thanks for commenting. Back then people certainly noticed our differences, but they didn't have a name for them. It wasn't until the late 90s that knowledge of there being an autism spectrum became widely known and accepted and even then, most people today still don't really get what being autistic means.
@@Autistamatic, I was a "calmer" presentation. Teachers recognized that I was isolated, that I had difficulties making contact and stuff like that. I had trouble following class - maybe auditory processing issues. I'd zone out, and when asked something, being like "huh?" all the time. So oral work in class I got bad marks all the way through school (just stayed in my head basically), which I made up for with written tests. I had a hard time working for classes that didn't interest me, got better results in a very few subjects that did interest me. Sucked at sports. Good at musics and languages. Always at breaks I hid on the school yard in some calm spot, together with one or two other people who also didn't enjoy running about making noise. Always last to return to class, while the classmates were still being monkeys. I always yearned for the moment school ended and I could go back home, to my room, doing the stuff I loved, like videogames, watching anime etc., either alone or with one or two very close friends who shared those interests. Occasional meltdowns, but almost exclusively at home. Around adolescence I turned inwards with that, becoming depressive basically. For a while, things would always go smoothly, then I'd have low times where I couldn't perform anymore, and the results tanked. For a few years, I experienced bullying in school. I basically neither understood nor cared how to behave like the other kids, how to be in style. Dressed like whatever, stuck to my hobbies, didn't go for the other sex as early ... And we can't have that, can we? No one back then would have called that autism.
@@user-nm3ug3zq1y This sounds exactly how my school experience was in Germany in the 2000's. Other kids picked up that I was different and called me retarded, and a case for Weinsberg (a local town nearby with a psych ward). The 1 or 2 friends I had were false friends who only invited me after school, and pretended not to know me otherwise. One time when I was the last kid skipping back to school building after gym class, I was seen as suspicious cause I seemed happy and had my backpack checked at the principal for a gun. In case I was planning to shoot up the shool. Mind you, in Germany where that was rare! Cause teachers knew I was a quiet kid, a strange kid, a loner, also with a troubled home life (single mom was an alcoholic). School never helped me. No one wondered if I was autistic and had trauma. I was diagnosed age 34, after an autistic facebook friend picked up I might be autistic
@@catxtrallways, funnily enough, musical hearing is maybe my strongest skill. Have two conversations going on at the same time, and you immediately lose me. It's just not the same, isn't it? In my case, I'm not so sure about ADHD - I only get moderate symptoms on tests for that, and mostly in the areas that would also light up with autism. The other factors, like sensory overload, do sound likely though. This also got worse when I felt really threatened, like in those bullying years, and it got somewhat better as soon as I got more freedom with picking my classes, the students were a bit more grown-up (calmer), and also fewer. And PDA feels like a strong factor in my case. I simply didn't decide to be in school, so I basically just sat there and thought about where I would prefer to be, what I'd want to do. EDIT: Just did a PDA test and got ridiculously low scores, far below the threshold! So maybe not that after all, but the usual dynamic of strong drive for autonomy, monotropism and interest-basedness.
@@sabserab, I'm shocked that "retarded" was still a thing at that time. In my generation "Spasti" was the favourite word of many, used for every way of different. Next to "schwul" obviously. (Seufz.) Fierce, man, the issue with the "gun"! Way to help troubled children with their troubles. I'm happy to hear that you figured it out after becoming a grownup! And blessed be those who spot us and tell us in the right moment, while everyone else is just raising an eyebrow or looking the other way!
Even in 1993 and 1994 it was still being missed, i had a full children's psychiatric assessment at that time spent 3 months in hospital. i had to work it out myself nearly 30 years later and get a diagnosis.
I went through life struggling with feeling like I didn't fit in and feeling like I was not a "proper" person (still do). Then, earlier this year I was assessed and then diagnosed as autistic at the age of 57. I don't know how it was elsewhere, but here in the UK, when I was a child, autism seemed to always be portrayed as some mysterious, almost alien phenomenon, and therefore, perceived as such. Therefore, I had zero chance of being identified and recognised as autistic. Of course it's now known that autism is hugely diverse and nuanced, and unique to each individual. After my diagnosis, I experienced an odd combination of relief, pride, and self recognition, but also anxiousness, feeling like a fraud and utter confusion as to who I really am and whether I could ever be at peace with my new found "identity". Let's say at the moment I'm trying to "manage" my feelings and taking it one step at a time. Anyway, thank you for a great video.
I have been called "weird", "loser", "anti-social", "smelly", etc. I have been ostracized and the target of bullying (physical and verbal). I was not good at many physical activities (also did not enjoy them) and went out of my way to avoid them. I spent many days crying in the bathroom during class time and getting a poor attendance record as a result. One year I could spend most days not talking to a single person, including the teachers. I went through this without any diagnoses of autism. Since those years my life has been a mess and I have dealt with depression more than once and my poor health has nearly killed me. I don't really care what anyone thinks at this point. I feel relief and a better sense of self than I have ever felt before. So much makes sense now.
"Just try harder" "youd be late to your own funeral" "just spit it out" "youre just being lazy" "get to the point" common phrases ive heard throughout my childhood and into my adulthood. The sensory overwhelm is real, the anxiety is real, the executive dysfunction is real, the self hatred becomes real too. Thankfully since getting to know myself sober, its opened up a world of compassion and acceptance of myself which has replaced a lot of the self hatred. There is hope. Dont lose heart.
@@kyleethekelt Yep. It was a nod to "Roald Dahl's Tales of the Unexpected". There's a recreation of the show's logo as "Tales of the Undiagnosed" in the title sequence too, though you've been spared my undignified writhing silhouette behind it😂
I’m in the over-50 bracket. I’m also multiply exceptional, being gifted. That giftedness absolutely hid my autism and adhd. Funnily enough, so did my strabismus (“lazy eye”, but not really. Having eyes not quite pointing in the same direction means people don’t make comments about making eye contact. 😂 Since strabismus is a neurological condition, it’s likely related to a neural divergence. As soon as I heard about “Asperger’s”, it seriously resonated. I was still masking heavily, so I didn’t see a reason to pursue it further. It wasn’t until the last few years that changes at work pushed me into burn out that I had to understand myself better. Still working on that part…
I was diagnosed when I was 7 and NO therapist or school board member wanted to acknowledge it, It was almost like I was radioactive throughout my school career. they usually just threw me into remedial classes and I had to learn on my own.
I was diagnosed at 56 yo. 4 years ago. It was a shock. It sort of made sense. I was academically very good so I am sort of glad I was not diagnosed in my school years. I was bought up in a rural city on the edge of the desert with people of generally conservative outlook. I would have been treated like I was really deficient which would have been a real set back for me. I would have really liked to have known in my uni years/or after graduation and entering the work force as I would have made different decisions and in particular not tolerated what I now see as others abuse. I definitely would not have internalised this as self-blame and understood it for what it was:projection. .
In the 70's, I used to hide in a corner on the playground and throw gravel at children who tried to interact with me. My report card said I was "extremely shy". Now, it's clear to me that I'm on the spectrum. I have meltdowns when I can't be alone in silence. Can't stand noise or chatter. I mean, I really can't stand it. If I would've had parents and teachers who understood, life would've been far less difficult.
When I was in my teens (I was born in 1982) my mother learned about Asperger's at work and said to herself "that sounds like my son". Unfortunately, she never told anyone. Finally I got diagnosed at 39, she still didn't give me an explanation for why she didn't tell me.
For me it was my sister who told my mum she thought I was autistic. Sister was studying psychology at 6th form, this was about 25 years ago. Neither of them said anything to me! I'm now waiting for an official evaluation after discovering autism and myself as autistic by myself a couple of years ago! Families eh!
My son went to a huge comprehensive from 2011. Displayed typical ASD traits. School pastoral team thought he might be dyslexic (very trendy at the time). He got into trouble (exclusions) and teachers always said he needed to participate more in classes. Neither the pastoral team or teachers or even CAMHS mentioned the word ‘autism’. So we were none the wiser. He’s still on 3 yr waiting list for an NHS assessment.
Over the years i was told by countless employers to "Just get myself together", or to go find another job, while i did a really great job. They never explained what they meant by "acting normal", yet went out of their way to make sure i knew i wasn't one of them.
I had seen several therapist for a few years and not one of them picked up on the fact that I'm autistic. I actually diagnosed myself in a way. I saw a movie in 2017 with the main character being autistic. I went back to my therapist and asked her to find me a place to test me for autism. I was 60 years old before I got tested and diagnosed with autism and ADHD, I'm 66 now. I think things haven't come very far with autism in the last 30 years. Scientifically there may have been some advancements, but the average person or average therapist is as uneducated as they were 30 years ago about the whole subject. Even a woman who heads the disability department at the university where I went to get a masters degree a few years ago called me mentally ill right to my face. Autism is a complicated issue, but it seems like nobody puts any effort into understanding it, including therapist. When I asked my family doctor for a referral to the place that diagnosed me, right away he said, "you don't look autistic." That's bad when even a doctor has no clue about autism.
Hard to ever trust anything that doctor tells you after that comment. I am 62 and it is obvious to me I am autistic (my daughter diagnosed in her 30's as her son has been diagnosed with ASD since he was 4) - I would say my father is also - I wonder if there is any benefit of getting a formal diagnosis at my age
One thing that I feel that had a major effect, was being born to parents who grew up as children during the war. I don’t think any of us will ever understand and I don’t think that even our parents realise just how much what happened to them during the war effected the way that they were towards their neurodivergent children
Which war specifically? Curious. I have some theories around this as well. My dad's parents had ten children. The tenth was born by the time my grandma was 38. When she was pregnant with the fourth, he (grandpa) was drafted and shipped to WWII. He received the news that his fourth child was born; he did not have to go. He was already on the east coast (we live in the midwest). He went anyway. I can't imagine having ten children. I can't imagine any of that life. I can see the effects of it in all of our family. Incredibly talented, smart, funny, kind and broken people.
Im only 28 but I grew up in a small town, I don't think my family or anyone around even knew what autism was beside the name; looking back they've always described me with all the classical things "quiet, naive, struggles with communicating, avoids eye contact, gets way too obsessed with things" etc etc, but I was told to just talk more and try harder
Part of me wants to be upset that I wasn’t diagnosed when I was sent for evaluation after evaluation in the 1990s with no conclusion about what was “wrong” with me. No one was pretending not to know, they genuinely didn’t know. Yet, the label might have done more harm than good at that time with how much misunderstanding there was (and continues to be) around autism. As an adult, I am able to navigate that much better than I would have as a kid. However, it might have saved me from the belief that I was just broken with no explanation, except some moral failing or demon possession (yes someone suggested that). So it is a mixed blessing. Despite all that, my mother labored to identify where I struggled and why even without the help pf a diagnosis, and found strategies to help me cope with the neurotypical world. In some ways, having no label kept her from being biased about it. She told me, “it’s like the things that other people don’t notice you notice and it takes you a while to process it” and she said, “you take a longer time to adjust to changes than most people. As long as I give you space and warnings about what is going to happen, you are fine. I know you don’t mean to cause trouble and I want other people to understand that, too.” And many other things. I am so glad I had a compassionate mother. It was the school and psychiatric system that really made my life hell.
since I have been thinking about this alot my first responses to even just the title were: "they did notice, but they didn't know it was autism + denial and ignorance" people would rather blame me for my "oddities"(aka considering it intentional) or play it down as just being quirky if I complained about my issues, than consider that what I had been talking about would be valid in some way. For others I seemed "unique and interesting" which is also not necessarily comfortable, because I don't want to stand out and as a child I was so chronically overstimulated all the time that I just wanted to be left alone and wished to be "just average and like everyone else" so I wouldn't gain attention for things I didn't even know what I was doing that was making me stand out so much...-.- So people definitely noticed....but they didn't know what it meant (and maybe some didn't want to know)
Really appreciate this, Quinn. I'm 52 years old, and I only figured out with the help of my therapist that I am autistic a little over a year ago. I've also recently been diagnosed with ADHD. Looking back over my life, I have mixed feelings about not being diagnosed earlier in life. In some ways, I think it may have been helpful to be afforded some accommodations. But having some sense of the stigma against autism (or anyone who was different from the mainstream, really) which was so prevalent back then, I'm not sure how beneficial having a diagnosis would have been. I suspect I also would have been denied a number of opportunities I've had without the diagnosis. My sense is that society is slowly becoming more understanding over time, and truly science is only starting to understand autism and all the ways it presents, so it may be more beneficial (or, rather, less harmful) to have an earlier diagnosis now than when I was a kid. Even now, though, I feel conflicted over whether it's a good idea to reveal to my family and others that I'm autistic. I'm not sure whether the arguments and educating I'd need to do are worth it.
Yes, lots of interesting and pertinent thoughts there. Perhaps my notion of wanting to invent a time machine to be able to go back 40 odd years and re-do life with an autism diagnosis in my pocket is a little naïve. The time maching might take e back and allow me to understand me better, but it wouldn't change the world around me. I would still have been me and the world would be the same world it was at the time - with its ignorance, prejudices and hostile people and bullies. Yes, it would probably turn our to be a very disappointing let down in many ways. And to be fair that's the main moral of the story in many time-travel stories isn't it. Probably better to let the past stay in the past and just focus on what's left of the future (talking to myself, I'm 47) and do more of what's fun and meaningful instead of trying to invent a time machine to go back and do the first half of life properly knowing who I am. I guess what you reveal to other people is entirely up to you, if it feels right and there's an opening, then perhaps it is the right thing. If it doesn't, then don't. Perhaps it depends on the strength and kindness in the relationships you have with your family and other folk. Lots of issues and feeings to work through aren't there. Lots of what-ifs and buts.
*raises hand very meekly at 47 years old:* I do not have a diagnosis. But it has slowly become important to me to begin assessment because I have A LOT OF QUESTIONS about why I am the way I am. I was one of the "gifted kids" until I would not behave or work in high school, to the point where I had a huge breakdown finally. I'm *fine* today. I can't say one way or another if I'm good or bad at masking. But when you talked about the timeline for the probability of having been selected for assessment, it really resonated with me. In the last couple years my attention in life has really drifted to the awareness of a spectrum like autism, and the history of how people have been treated and mistreated in the foundational past, and in the name of science. It drives me up the wall to think that I might have born at just the right time to fall through the cracks, lol. Very thoughtful episode, it's the first time I've watched you, I'm looking forward to watching more of your videos!
Thanks for commenting. I'll link you a single video and then a short playlist which I think you might find useful, interesting - maybe even cathartic: The video: ua-cam.com/video/NKYM_5wfmuc/v-deo.html&pp=gAQBiAQB The Playlist: ua-cam.com/video/NKYM_5wfmuc/v-deo.html&pp=gAQBiAQB
I was born in 1965 and I am convinced that a diagnosis would have been very bad for me. In the sixties and seventies, doctors in Germany did not shy away from putting children with psychological problems in homes. I personally overheard a conversation like this at the doctor's: "You're going to have trouble with this one, you have to give him away." Last year a user here on a UA-cam channel noticed me: "You could be demisexual, take an autism test" What can I say, I looked at the test when I was 58, oh god that's me.
That happened in the US too. I have worked with people who have lived in those facilities and the trauma they live with is more impactful on their lives than their disability.
I recently learned that 70% of (both genders? of) neurotypicals self-identify as cisgendered and heterosexual, while 70% of (both genders? of) neurodivergent folk “don’t”. I have two grandnephews who are each the other’s brother. The older one is neurodivergent and thinks they’re still too young to decide whether they want to be a boy or a girl. The younger one is neurotypical and pretty sure he is and wants to be a boy. (Both are still too young for the question of sexual orientation to even come up yet.)
Yes, I suppose that's the disappointing reality flip side of time machines isn't it - it's a bit superficial-thinking to imagine that getting a diagnosis as an adult and then going back in time with it in my pocket to do childhood again decades ago would make everything perfect. The world was what it was, the other people were who they were and fundamentally I would still be me, even if I did understand myself and my quirks a little better. yes, time machines are a double edged sword, just like in all the time-machine-y stories which have already been written...
@@tomhchappell At least kids these days are given a choice, I'm an older millennial from a non-English-speaking country and I was taught that my body decides my gender not what I think or feel. I never thought even I could question it. At least I don't mind my body, unlike people with gender dysphoria. But I hate how society claims that my body should decide what are my interests, my role in the society and in the relationships, even the way I speak, feel or show emotions. From the young age I was immersed in the culture "girls play with dolls, boys play with cars" and I kept questioning: why? How is that related to whether someone is a boy or a girl (or apparently nowadays there are other options, like non-binary, demi-gender, gender-fluid, etc.). I don't even know what my sexual orientation is, I never felt the desire to have sex with a specific person, more like had ingrained the teaching of the society that "people in romantic relationships should have sex" so I did and I can describe it as "fine, but not the thing world should spin around no matter what people claim". It's like, if you eat a tasty meal, the experience is okay, but would it be worth dying for? Killing someone? Ruining your life for? Nahhh. Because of that, I can't even be sure, what gender(s) I'm attracted to, I could imagine myself in a relationship with any, as long as they don't expect me to be overly enthusiastic and "romantic" about things.
Thank you for this. I’m 51 and have always struggled with relationships, communication and emotional dysfunction/regulation, including the occasional meltdown. The autistic element has, for me, been overshadowed by family related problems that caused anxiety and depression to need lots of firefighting, but after lots of therapy and self work the layers of the onion are now maybe exposed enough to get to the root cause. Interestingly it’s because I am currently back in the education system (doing a PhD) that I’ve been able to access support to explore this and today someone finally said “you show lots of autistic traits, shall we see about getting you assessed?”. Let’s see what comes of it. Thanks again
Well said. My 2 daughters would not have been discovered as autistic if we had listened to the doctor that we spoke to about getting them Assessed and our son would not be on the waiting list for and ADHD assessment because she was trying to convince us that did we really want to label them with the stigma of being Autistic... Well after having already researched about form them and realising I myself is probably AuDHD and probably hubby too is Autistic I didn't want them going through school wondering why the don't fit in and not being able to access the support with sensory needs that I didn't have access to growing up! They are glad we got them assessed it's made their world easier to understand and explain and their mental health is much better for it too, they were struggling before they were assessed.
Good for you, your children will thank you for what you're doing I'm sure. We're on the same journey in our family too - autism evaluations for me and one son, ADHD for my wife and our other son. We've had lots of lightbulb moments over the last couple of years and are learning about ourselves and eachother, which is helping us get along better as a family. It's hard isn't it, and yes, the motivation to allow our children to understand themselves earlier than we did to avoid having to muddle along and struggle as much as we did is a string one for me too. I hope it goes well for you.
It was Wakefield’s scare mongering about MMR vaccines turning children autistic. It scared my wife and I when our first was born, in 1999. Would our daughter become autistic because of vaccine damage. A lot of soul searching and deep diving research let us look at relative risks of childhood diseases v vaccines. Irony is, I was/am, the biggest chance of our children being autistic. Now strongly suspect that 2 of our 3 children are autistic.Tried to get a diagnosis for one of our daughters, about 5 years ago, but CAMHS said our daughter couldn’t be autistic because autism is a boy thing. And the “risk” that our children are autistic arises from me being autistic.
I hope your daughter is doing fine despite the blatant incompetence of the clinicians you met five years back. Obviously it's not "a boy thing". I'd like to suggest a youtuber to check out and maybe share with your daughter(s) if you or they are interested/don't already know of her: @imautisticnowwhat
56 and female. Master masker from early, early on. Just this year, I am asking myself all these questions about who the heck I am beyond just an outisder and a survivor.
diagnosed 10 months ago at 50. Yes was like a method actor studying how to be,dress, talk, etc. in order to survive. I miss living in a quirky city where no one batted an eye if you were different, everyone was different! However, as old age nears, there is a certain freedom. Will I make it to this life stage, it has been such a struggle to get this far. Surviving has been an ableist nightmare at times.
Well, here in the United States if you’re an adult who complains about dealing with the world you find yourself in they put you on drugs. If those drugs don’t work they put you on stronger drugs. And when I was a kid in the 1970’s a teacher claimed I was retarded. I got tested and shown to be “gifted”.
As a child I was "sensitive". As the oldest of three boys, when my brothers were growing up, I couldn't stand how loud they always were and resented them for their constant loud vocalizing to the point that I just had to go away because they wouldn't ever stop or tone it down and it would drive me crazy. They have a much better relationship with each other now than I do with them, I think due to how uncomfortable I got trying to spend time with them as we were growing up, despite my age being closer to the middle brother than his is to the youngest. My mother kept me out of first year kindergarten because I "wasn't ready" for it. If that wasn't a sign I don't know what is. It definitely didn't help and just made the feeling of being different from everybody else even worse. I scored highly on standard testing, was considered "gifted" but wouldn't do homework. So many clues...
Thank you very much for all your good work. Even though I educate people who seem willing to learn, it's only ever been selfishly. I had never even thought I might be making other autists lives easier. I hope it works like that, hard to judge my own level of communication. Thanks again Quinn.
I suppose for the algorithm's sake, I just want to acknowledge the consistenly impeccable spelling, grammar, and rhetorical construction of nearly every comment on videos from this and many other other autism channels. ... Does that make me weird?
My parents response when my teachers and school counselors told them to have me checked for Asperger's was denial. "No she's not, she's fine." That was 30years ago. My mom still won't let me talk about it to/ near/ around her. "STOP TALKING LIKE THAT! YOU'RE FINE!!!!" My dad is almost as bad, but without what I can only assume is a mother's misplaced guilt over the ignorance of thinking she "did this to" me, or failed somehow. Only in failing to listen to/believe me that something was wrong, or the experts when they tried to tell her I needed a professional eval. I'm coping/trying to give her the benefit of the doubt, its the only defense I can think of. I'm recently self-diagnosed ASD1, and a significant part of the anger I carry about my dismissal and late-diagnosis is at her. If she would just talk to me about it now maybe some of the anger would lose its edge. Be well, folks... ❤
My goodness me, I'm having an evening going through these comments and seeing parts of my own experience over and over again. I think anger towards family members who minimise, dismiss, refuse to discuss, deny and cover up is perfectly justified. As I said further up the page, I found out that, when I broached the subject of autism with my mother (I(m 47 and wanted her to fill out a parents' questionnaire as part of my preparation for my evaluation) she told me that she (for the first time even I might add, usually it was the opposite) thought that no, I was perfectly "normal"; although she also admitted that about 25 years ago my sister (who was studying psychology at 6th form at the tme) had told her that she thought I was clearly autistic. neither of them said anything to me of course. I found out about autism initially because of the youtube algorithm throwing some autistic creators' videos at me while I was trying to work out what on earth was going wrong in my life. A lot of research water has flowed under the bridge since then and I'm convinced I'm autistic and trying to stop myself fom exploding from frustration waiting in line for an official evaluation. I absolutely get what your're talking about and understand what it feels like to have family like that.
@@matthewbucktrout3291 most of these words could have been mine. Pretty much everything but the sister factor. I was diving in to the UA-cams looking for coping strategies on "unrelated" things as well, 2019 into 2020, and everything kept sending me to autism-related sites. My "are you effing kidding me?!" moment was about 3 months in to my rabbit-hole on the topic, when I knew for sure this was it. I decided to spend the next year "living as an autistic person", basically trying to prove that that *wasn't* it. Aside from the one year my parents let me take Ritalin for ADHD, that was the easiest year of my life. It's ASD1, ABSOLUTELY 100%, and as much as I'd love a formal diagnosis for validation and work/support purposes, I would trade ALL of my family members in order to keep my self-diagnosis, it has made that much of a positive impactful difference in my life. At 45years old, the future looks less bleak than it ever has with this diagnosis in hand.
@@user-ye1go6hw9r Yay, go us! UA-cam is fantastic, really. I knew nothing at all about autism, I wouldn't have thought of looking it up. I was stuck on personality disorders, bipolar, schizophrenia, CPTSD and narcissism related issues, Childhood Emotional Neglect. All of them had some traits which seemed to ring a bell a bit. but then youtube hurled autism at me enough times that I actualy started to look at the videos. And then, oooh, blimey. Every damned video seemed to be about me. With the other conditions I O.D.-ed on trying to learn about them and it became more and more clear that they weren't describing me afterall. But autism, the opposite. the more I watched, the more I kept saying, well that's me, and that's me and heck that's me too. Some of the videos brought me to tears because I felt that these people had seen me and knew me like no-one else had ever seemed to in the past. And I hadn't even met them! I've never had an experience like that before. In the past, to get by in social situations required lots of alcohol. I had "friends" and we "went out together" and got drunk. But in hind sight, what was all that about? Putting aside the fact that I have always had trouble following conversations in noisy environments - which I've recently learned is an autism thing (difficulties with auditory discrimination when there's lots of background noise); all you can do when you're drunk is talk crap and do stupid things which you can't even remember half of the following day anyway. That's not (I now understand) what real friendship is. Real friends are people who want to spend time with me (and vice versa) when we're sober and actually share common values and perhaps common interests. Trouble is, I don't have many of those and never really have had. In fact I have one, my wife of over 20 years. I'm hoping that me learning who I am and why will help me become who I really am, throw off the crap bits of the past, re-prioritise what's important anf meaningful going forwards and perhaps find some other real friends. Or if not, then at least find some meaning and point to my own life so it can be something to look forward to and participate in fully, rather than, like you say, be a bleak-looking, uninviting future which I sometimes feel isn't worth the effort. Thank you for your reply by the way. I'm actually enjoying myself this evening. Allowing myself to type what I'm thinking and feeling and hearing back from real people with whom I clearly have some things in common. Thank you Quinn for the platform too! Have a nice day!
I'm 44. I got my diagnosis at age 40! I'm thinking back to childhood in the late 80s and early 90s and I believe I was taken in for an autism diagnostic assessment at age 8 or so. I have memories that line up with what I know about how testing was done back then. But of course, as a girl, and already quite skilled in masking, I did not get detected at that time. As I grew up, all we thought we "knew" about autism didn't match anything I knew about myself. And the fact that my mother wondered if I was autistic at all, was hidden from me until I snooped in the childhood medical records my mother keeps! I've asked her to turn over all my childhood medical and mental health documents. It's really important for me to know these things about my childhood now to see myself in perspective.
Other fun milestones before my own diagnosis - As a young adult in the 2000s all the men I dated had an Asperger's diagnosis! I was obviously drawn to other autistic people. I got an Asperger diagnosis for myself at the age of 30, after some urging from a boyfriend at the time. But it didn't really focus on the fact I do have autistic support needs. I'm so glad I fell down the rabbit hole recently and got a new assessment to get Asperger's off my chart and ASD Level 1 on there. I have people in my life who understand and support my needs and differences and it is so major and healing.
Placed in special-ed during kindergarten and have all the DSM traits but not diagnosed afaik. This was in the 80s. I was able to speak and interact with others so I wasn't autistic enough to be noticed.
Age is almost definitely the major factor as to why my dad (who is rapidly approaching his 60s) wasn't diagnosed in his childhood. As for why it took until two years ago to finally get a diagnosis, it's because his father didnt like him and his mother was an alcoholic, so he had to rapidly develop mechanisms to survive in general society that masked his innate self. When my brother broke the news to me, my response was "yeah, that makes sense". It's honestly amazing that none of us put the pieces together. His insistence on precise communication, his borderline obsessive interests, his hypersensitivity to smells and sounds. His general rigidity. But I suppose to us that was normal. That's just dad.
Spent the whole time on the verge of tears. The biggest lesson everyone else, (non autistic), needs to learn, to download into their conscious thoughts, is this 'unknown condition' informed and influenced every single aspect of our lives, day in and day out, and all we knew, was something wasn't right, our lives, or our selves, our families. Always this on going stressor of feeling and being alien to our own existence. I was born in 1964. By the time I was 4 or 5, a doctor offered my parents medication for my hyperactivity. I always wondered how I went under the radar, but as you have pointed out in this video, there was no radar. We were the undisciplined, that needed more disciplining. My parents had a major fear of my growing up 'bratty', now I see it was because I was very needy, for very real reasons 😿
As a kid, there was talk of referring me to a 'child psychologist', but my mum refused (based on her friend's suggestion) because I'd be stuck with a label for life! When I was 18, I was working on a street market, and the boss told me "You're behaving like an autistic child!" - I still don't know what I was doing to warrant that. I was 54 when I was finally diagnosed.
Born in 75, diagnosed in early 88, but was not told of my diagnosis. My school years were a dumpster fire. Unfortunately, my mother was counseled not to tell me, lest I be labeled. So basically, nothing changed. My mom passed away when I was 21, without ever telling me. I struggled through life and in my mid 40's, suffered a bad and prolonged bout of autistic burnout. It was at this time that my older sister told me of my diagnosis at 13. I remember all the testing and appointments, but never learned why. It's a good thing that I found out when I did. That burnout was bad and I lost skills and regressed. I still haven't regained much of what I lost.
Blimey. I'm struggling waiting for an evaluation (I'm 47). To think that you had yours decades ago and could have used that information to your advantage, to cope better, make better decisions but for that fact you weren't told about it. Ooooh, I bet that goes around in your head a bit. I know it would in mine. Another nuance in the time machine story plot - go back in time and learn about your diagnosis at the time and life might have been different. But then the story never turns out how we might have wished for anyway, the world around us would have been just the same. and more to the point, time machines aren't readily available, yet! Blimey. The amount of time I've spent ruminating about how different the past could have been if I'd known decades ago (and because of that, the ensuing present too) is ridiculous. having been diagnosed decades ago and just not being told just adds an extra layer to the ruminations I guess. I hope you work through all that and come out of the other end feeling better.
I'm a boomer. After about the 4th grade, I had all kinds of trouble in school. I became a bully magnet. I went from good grades to barely passing. That was in the 1960s. I have trouble making and keeping friends. I've tried very hard to emulate the social behavior of others, but it becomes a chore, especially after engaging in it for a long while. Only recently have I discovered the possibility that I'm on the spectrum, because of folks such as yourself on social media. I don't know if it's worth the effort and expense to get a diagnosis now. I've managed to endure this far, and if I've been masking, I guess I did it well enough.
I am about to turn 50 soon, and I was recently diagnosed autistic. I was very relieved to find out. It explained many of the troubles in my life, and videos like this help me understand how it can work and be very helpful to me, I really feel better knowing I am not alone.
My grandma "didn't believe in that stuff" but even she knew something was off with me and it wasn't wilfull. I was diagnosed with adhd at age 15 and diagnosed as autistic at age 38. I'm 45 now and it's been really helpful for me to give myself more grace and pay attention to my sensory needs.
“Very autistic trait of talking about ourselves” as I learn about Neurodivergence, Autism Spectrum, my own diagnosis of ADD (*now part of the ADHD spectrum), I stumble upon lots of little nuggets of information from the Autistic community that continues to validate my own identifying myself as possibly autistic. It’s interesting that you mention this trait because all through my childhood I was eager to discuss myself and my genetic condition. I would have been just as enthusiastic to talk about dinosaurs and the weather. While I would talk about my medical history, I also was shamed by my own mother for only talking about my medical condition. I wish people would have asked me to talk about dinosaurs or the weather. I guess those topics were considered too masculine back in the 80s. Another thing I got accused of was mimicking other people or copying any of their mannerisms. Now I just feel like if I try any life hacks offered by autistic people, that maybe someone will think I’m just an attention seeking fraud. I’m not even sure what I am wanting to say, I just needed to get some of my thoughts off my chest. I’m enjoying your videos.
If I had not been homeschooled basically my whole life I probably would have been diagnosed as autistic as I my struggles would have been noticed more easily by none-family members and not ignored as "Amy-being-her-weird-and quirky-self". I am not sure if this would have made my life better or worse though as homeschooling was a blessing in my life and florished in that learning environment. In my teens I did try out highschool and hated every single thing about that experience. I had never been as stressed out than since. It was a living nightmare experince.
A long time ago, on the late 80's, I was a kid in elementary, and on a diagnosis path (was called "gifted" at the time, had perfect literary memory) it all got sudently derailed by a set of unfortunate events, sudden severe asthma, a divorce and a change to a more backwards part of the country, poverty, domestic violence, being bullied even by teachers, etc. It's a cliché, autists get hard lives. We all pretty much forgot the gifted child phase, (my literary memory was repressed by trauma anyway.) Good news is, I fixed my life. Autism awareness like what you provide, it keeps me sane. It's not my fault that I failed at everything about social life. I don't need to endlessly worry about, I'll make it through as I can, with the help of my wonderful family who are everything to me.
I had a conversation with a neighbour the other day, who told me his daughter was pregnant, about halfway through pregnancy in fact. He then went on to tell me how she and her husband had been going through a difficult time because there had been some sort of blood test done following some sort of echographical cranial measuring which suggested the baby "might" be Autistic and the possbiliy of terminating the pregnancy because that was raised! She then went to a different hospital where she was told that the blood testing was not reliable and that she shoudl have an amniocentesis done to confirm. I'm not sure of the outcome, but the neighbour seemed to suggest that the "scare" was over and the baby was deemed OK afterall. The neighbour isn't, in my opinion, a very reliable source of information of any sort, and the story was of course at least second hand. But the boiled down version was that Autism had been "suspected" as a possibility and, because of that, the notion of a pregnancy termination had been raised. I was totally shocked. I really wanted to say to him - don't you realised, I'm Autistic and my son who you've known since he was a baby who's now 15 years old is Autistic. Would you have encouraged your daughter to have her pregnancy terminated if there was a possibility the baby turned out like us? But, unfortunately I can't say that yet. Because we're both still on the waiting list for a diagnostic assessment. We might think we're Autistic, but we don't have the official stamp. I so want to be able to present myself as Autistic and be able to speak out for Autism, but I don't feel legitimate to do so. My head wants to explode with frustration. And the imposter syndrome is very hard to deal with sometimes. Yes, perhaps I'm wrong and instead of being Autistic I'm just, well, wrong. A broken horse instead of a perfectly good zebra to paraphrase another Autistic chap. To your age related criterion, I'm 47, born in 1976. My leaving school report at 16 described me as "introverted". I wasn't a trouble maker, I was "quiet" "reserved" "a loner" and did well academically, so wasn't a problem to need solving as far as the establishment was concerned. As far as my family were concerned "weird" "not normal" and more recently "a useless waste of space" were terms used to describe me. "Autistic" as an explanation for my life experiences and a guide for how to make a new path sounds right to me and my goodness what a relief it will be to get to my turn in the queue for evaluation and out the other side. Surely it would be resources well invested to decrease waiting lists for Autism evaluations wouldn't it? Consider the savings in mental health - depression, anxienty, suicide, sick leave from work for unexplained burn-out. Surely if more Autistic people knew they/we were Autistic and could make related changes in their/our lives, they/we could become more able to contribute meaningfully to society, in ways which work for us, and society would be a better place? I'm stuck in a limbo rut. I need to know who I am so I can work out what to do about it. And I know I've got at least another YEAR to wait before it's my turn to bear all for the evaluation. Anyway, thank you again for your work Quinn, have a nice day
I read your post with great interest, and I think you have already done all the online tests and seen all the corresponding videos. And done all the research. I know about imposter syndrome too. And I have a son who is clearly autistic, and my father showed clear traits. Don't worry, you are part of the family!
@@Rabenov-wq8qy2qg5t Oh yes, I've done all the tests alright, and handed them in with dozens of pages of annotations to the evaluation centre. And read a growing pile of books and watched many, many hours of youtube videos produced by many autistic folk, and spent a long time soul searching and ruminating. now just need the say-so of a group of doctors I've never met who will ask me a bunch of questions and make me do a bunch of tests over half a day and hey presto, I'm either Autistic or not. Then I will get to go home and ruminate some more on the outcome and build an appropriate life for the there-after. Perhaps a good career change would be to go into time machine manufacture. That way people could go forwards in time to the Autism evaluation date, get the diagnosis done, then go back in time 40-odd years to do their childhoods and make their life choices all over again armed with the knowledge of who they are/were. But then, it'snot just Autistic people who sometimes have such thoughts I guess. Hey, even better, perhaps that means there's an even bigger market for time machines 🙂
When I look back on all my employment failures and marital failures, and consider how much better my jobs and marriages would have gone if I and my employers (or at least my immediate supervisors) and wives had known about and understood either my ASD or my ADHD (or perhaps they would have needed to know both); and then think of the fact that I’m now 72 years old and will never work nor date again; it’s really hard for me not to consider my own entire life useless.
@@tomhchappell It's really hard not to do that isn't it - to ruminate on how things light have been different, better or happier. I will admit I quite often look at my own life and in that way too. So many wrong turnings, so many missed opportunities or unfulfilled potential because of choosing one direction over another because of not understanding who I am. I know I need to work on focusing on the things which actually mean something to me, I need to find meaning in my existence. A reason to be joyful (I realised recently that joy is not something I had experienced for a very long time and hadn't really realised). Everyone only has the time left that they have left and we don't know how long that will be. I need to train myself to stop ruminating on the past and what could have been and find a point to the rest of my life and make some changes so it doesn't seem like a waste of time. Perhaps one of the keys is to allow ourselves to do the things we're passionnate about, to work at them and get better and better at them and find joy in that. I struggle with allowing myself to spend time doing what I love (music) because there are too many voices in my head telling me I SHOULD be doing something more "useful" or "worthwhile". It pisses me off to understand that those voixces are from my family of origin, the same people who called me weird, wished I could be "more normal" and latterly declared me to be a "useless waste of space". It's hard work re-parenting oneself and trying to over-write oft-repeated bullshit like that with truths like "you're actually alright how you are" and "you're allowed to do things you like doing and not ALWAYS put everyone else first". All this stuff is really, really hard. The only positive thing we can do is to focus on the future. But, just typing that makes me think that no, it's not that simple either. I often get bogged down in my future world. Dreaming about what I'm going to do next, or later, or next year, or in the distant future. That can be a trap too. That just leaves the present. What can we do right now to make things better? This is the first evening I've spent writing comments under a video. I"'ve been wondering for ages what it actually means to "join an online community" of autistic people. This evening is the first taste of how it might work. i've actually had meaningful (in my mind at least) exchanges with other people about issues which matter to me and them. Honestly, that doesn't happen very often for me. perhaps I'm making a breakthrough for myself by sticking my neck out and putting finger tips to keyboard and typing my mind? We all have different crap in the past, the only thing that's the same for all of us is that it's in the past. It's just hard to leave it there, but that's perhaps part of our work for the present and the future. To re-organise the mental filing cabinets and label the past-events-cabinet just that - the past, to learn from perhaps, but over, gone. Thank you for your thoughts, I hope we can help eachother to get into the mental reorganisation and reconfiguring to make the rest of our lives better than the past. I really believe that understanding autism, for me personally, is helping and will help, with that task. But heck yes, it would have been good to have known about it earlier. No, stop. Present and future, not past 🙂
I have a niece who lives with me and who was diagnosed with autism last year, at the age of four. I've since observed behaviors and stims that she engages in which I also did when I was her age, to a degree. I've also heard my parents tell tale of how similar her behavior was to mine. The difference being that I was raised in the 80s and this wasn't a commonly-known topic, so it was never considered, while this knowledge is much more commonplace and thus it was given a chance to be looked at for her. Growing up, I was looked at as the quiet, shy one at the back of the class. My parents were never critical about my mannerisms, and I don't believe that they did anything wrong, so there's no blame or guilt-shaming there. But it's been brought to my attention more and more recently in the past few months that there might be a connection there, as I observe the kiddo's behaviors and interactions. I, just tonight, took the MQ test and scored 30 points above the average. I'm now very interested at getting this officially diagnosed. Maybe it's something that can help me better appreciate and understand what she is going through, so that I can in turn help her develop in greater strides than I did, socially.
Because I’m female and born in 1965. “Oh, she’s just a bit shy.” Says everyone. “She’s just highly strung, here’s a prescription for Librium/librax.” Said my doctor when I was 11.
Why wasn't my autism picked up earlier? I'm a clever white girl with two degrees and a driving licence. Diagnosed in 2016 at age 45. My parents weren't wealthy or well educated, probably also neurodivergent, and still don't understand. Also, neurodivergence generally was thought to be rare, even dangerous. But it's not. It accouts for, I believe, 20-25% of people, when all neuro-differences plus left/mixed handedness are added in.
I was born in Angola in 1972. Came to Brazil in 1976. The ignorance from my parents and teachers And the lack of psychiatric awareness made me an undiagnosed adult until this year when I discovered my autism.
My family just considered me as excessively and at times quite abnormally shy and nervous, very emotional and a bit odd, and having a bad temper, but they thought i was borderline genius after i started school because i maintained pretty much perfect grades all through school. But the actual truth was that i am only average to slightly above average intelligence, but 90% of my school was unusually behind or disabled in learning because the education was very substandard. They taught the same remedial stuff every year because so many of them just remained illiterate. There were only maybe 5 kids in my class that could perform at grade level, and we were the only ones that even achieved full literacy as far as i know.
Picture It, SmallTown USA, 1982.
"She can't be autistic. She talks and she's a girl."
Or the response is, "You seem normal to me." smh
Yes, “girls don’t get autism” 🤦🏼♀️
Or adhd
But here we are 🤷🏼♀️
But I was ‘bright’, an early talker, could read at 3, but boy did i struggle at school. Both academically and socially. And it didn’t really ever get much better. 1970’s kid.
It can’t be the changing lexicon of modern English and the emergent class of the emotionally needy having children and neglecting them in chains of generations
@@yarnbomber2166 it's 2024, my psychiatrist told me "you're empathetic, you can't be autistic". A few months later I looked it up and apparently autistic people can be hyper-empathetic...
@@arab6745 Yeah! That's a fact!
Most humans Sleep for a third of their lives. I'm pushing another third just weeping over songs and charity commercials.
Life in 2024 is friggin' EXHAUSTING!
"Hell is other people." -- Sartre
I’m a teacher, we are NOT allowed to diagnose people. Can we tell you have it? 100%! We can see, but are not allowed to talk about it with parents. We can say observations we notice, and ask for the family to undergo testing, but if parents don’t realize the importance of following up, it never happens. I see so many children in school struggling, particularly girls.
As far as I'm aware that's the case across the world, though in some countries educators do make formal referrals. Even in places like the UK where our teachers can only recommend, not refer, educators are still often the first to notice signs that eventually lead to a neurodivergent diagnosis.
Sadly that's mainly kids who cause problems to the educators or their classmates. Those of us who suffer in silence - the quiet and studious but no less confused & isolated ones - are still often missed by educators, parents & doctors alike until long into adulthood. I applaud anyone with the empathic reach and insight to be able to spot and give comfort to those of us still in that position.
FWIW my own diagnosis back in the 80s came thanks to the intervention of a teacher.
I think a teacher’s recommendation for ASD testing should be taken seriously if given
@@oritheo but when parents don't want it to be true, they'll just ignore it. Thinking it will magically disappear. I've seen it plenty
I wish a teacher would have suggested a ASD test instead of subtle comments. I knew nothing about ASD. 😢
so many poor autistic girls have low self esteem bc they dont realize they have autism and just feel theyre fundamentally messed up :(
To this day, even being diagnosed, people said to me "I don't understand why you are having so many problems, you are SO INTELLIGENT" and I just wanna punch something because *WHAT DOES THAT HAVE TO DO WITH ANYTHING?!*
SAME!
Its an excuse to act like a tosspot to an autistic person. Not a compliment at all just dismisses struggles.
It only makes it harder !
Meanwhile, those jerks couldn't even solve for x in an equation.
@@SarahMaywaltWhat they are really saying is "Be more like us"
I’m a female, born in 1975, raised in backwoods Georgia, USA. The only advice EVER RECEIVED was “just try harder.”
Easier said than Autism and adhd can do…
Diagnosed 8/2023.
@@karenpublic3391 1998, diagnosed with Autism and AdHd at three years old. Born and raised in northern Georgia. Your story is depressingly familiar 😞 congrats on the diagnosis and I hope you can recover someday.
@@karenpublic3391
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Rural Alabama here yep. “Try harder.”
Did you ever get this one? "You're trying too hard!" or "You're bringing it on yourself, you know." I got those a lot.
I was diagnosed August 2023 too! I was born in 1978. A little younger.
@@jensardam3429or “If you would just apply yourself…”
I’m black and born in 1977 I was just diagnosed in May. Race and gender is a major factor that has hindered diagnosis in America.
Thanks for commenting & raising an important point. Race is a barrier to this day and it's a senseless as the attitudes that kept so many women in the dark.
Trigger warning, racism: I literally had a mother of a kid in our school tell me that her doctor refused to diagnose her son, saying he can't be ASD because he's black.
She said, "maybe it's his white side?" _Which no parent should ever have to say ever._ Ever. I was nauseous.
I still have a hard time believing what I heard - not that I heard it, but that anyone could believe such nonsense as to apply such a falsity to _medical care._
(He was not a "bad" kid. He was just not the model "obedient" kid they demanded - likely due to inertia and social power dynamics.)
Race and gender and native language and socioeconomic class are major predictors of missing out on the opportunities to benefit from medical knowledge.
If true, you were likely misdiagnosed as autistic, because it was easier than telling you the truth.
I had all the opportunities for diagnosis but was seriously mislabeled and harmed by atrocious therapy's (Martha Welsh,) Was told I had an IQ of around eighty in the third grade despite reading at around a ninth grade level.
I'm 41 I was diagnosed around 5 years ago. Anyone else from the eighties relate?
I am 55 years old. I was diagnosed with Aspergers in the 4th grade but my parents did not tell me. I only know because a therapist thought I might be Autistic. I went on Facebook and read entries from a Parent of Autistic children group. Their stories about their children sounded a lot like my childhood. I told some of my friend and none of them were surprised. I told one of my cousins and she told me I was diagnosed with Asperger's in elementary school. I think my parents did me disservice because I constantly wanted to commit suicide because I was not fitting in and could not understand why.
😢😢😢😢 🫂
I haven't been diagnosed yet, but I strongly suspect it, and so do my peers and friends. Every time I brought it up to my family I was told "NOOO you're normal, there's nothing wrong with you!" meanwhile I would get yelled at and asked why I'm not normal and what's wrong with me. So confusing. People are so irrational and weird. I don't understand why we can't just see an issue, investigate, and then find a solution without a bunch of drama, lies, and agony.
@@mothdust1634you're autistic. There you go. You've been diagnosed. For free. Have a great day. Also, I agree. People suck
I am 56. In the era we grew up your parents probably believed they were doing you a favor by not attaching a label to you that would other you. The stigma around conditions like autism is still bad, but was even worse back when we were growing up. My cousin was diagnosed with autism in the early 1970s. No one in our family knew until we were all teenagers, and my uncle only told me because he believed he had cured my cousin.
@@earlwoodland1873, keeping important medical diagnoses secret from the actual person should be a crime.
My autistic traits were written all over my school reports. My struggles were blamed on my other disability and I was told I had to fix myself.
My struggles were chalked up to not trying hard enough even though I was trying twice as hard as everyone else.
@@faeriesmak
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Both of these points are so bloody relatable! 😳💖🧩
Yep. Me too. I was called lazy and told I just didn’t apply myself
I can relate.
The first I ever heard of autism, was my mother explaining to me why I wasn’t vaccinated. She made it sound so horrible!
Well, jokes on her, becaus we are definitely BOTH autistic 🎉
At least you can both be sure that a vaccination did NOT cause you to have autism. - Try reading the book "The truth about Vaccines."
@@martinkaczynski8526there is no scientific correlation between vaccines and autism. Autism usually presents at about 2.5 years of age, at a time when people are also getting vaccines.
I received 5 vaccines before starting school in 1964. None of them contained thimerosal. I started exhibiting characteristics of autism right on time at age 2 1/2.
The reason there are more autistic children now is twofold:
>Children whose autism is genetic (I would argue that that's all of them) are surviving birth and early childhood, which they wouldn't have even when I was born.
>And clinicians are getting better at diagnosing children. When I was in school autism was considered very rare, and the people who would now be diagnosed as autistic were instead called "retarded."
We've come a long way, baby.
I argued when they said my son was autistic. I said, sarcastically, "Well if he's autistic, so am I, because I was the same as him". That's when I first started to understand why being 'the best at reading books' wasn't a family gift passed down from my mother.
Lol that's what my mom said to me aswell when I was diagnosed in my 30s 😂 I sus she is aswell. It was her books on body language and other esotheric stuff on how to read ppl that I devoured when I was a kid!! Medical books, ency clopedias, always tried to understand others. Like my mom. Yet I was never understood
That was my bingo moment too.
😂❤
Same when my little brother was diagnosed and my daughter, also same with the reading thing!
As my son was getting diagnosed, my dad said to me something like, “He’s ok. He acts just like you when you were a kid.” He thought I just matured, but in fact got really good at masking. Just a few days ago I told my dad I was diagnosed Autistic last year. I could literally see on his face a paradigm bubble pop, like so much he thought he knew is incorrect. Btw my dad is a great dad and growing up in the 80s, everyone was ignorant of ASD. I’m glad I am able to understand my son and hopefully help others understand Autism better.
I sucked my thumb until the 4th grade, skipped everywhere, carried my schoolbooks on my head, and couldn't properly socialize with other kids, was constantly beat up, and was sent to a special school bc i couldnt mainstream. Finally diagnosed at age 49!
I was shamed by my family into stopping sucking my thumb when I was 6 or 7, but still had the callous on it until I was in my 20's. Taught myself piano by ear and never had more than one close friend. All of it recognized by my family with a simple "What a smart boy" or "He's so shy". Autistic meltdown was categorized as sleepwalking or me being overly sensitive and dramatic for attention.
It's a long hard road but it is nice to know that others have gone on it further than I have and survived.
😢 Sounds a lot like me. I skipped 2nd and 4th grades, was bullied at school, was a wallflower at any team games or dances, and my parents got together to consider with me whether I should go to a special school but we never made up our minds to actually do it.
@@tomhchappell I faced the "special school" dilemma shortly after my diagnosis in the 80s. In my case it was deployed as a threat. "Behave differently or we'll send you to the nasty, scary school where all the naughty boys go".
Being typically autistic, given a choice of 'A' or 'B' I chose 'C' and... here we are today😂
I was about 13 when I stopped sucking my thumb. The rest matches my life pretty well too. Whatever school I went to, it was the same.
Hi there I sucked my thumb until i was 11, year 7 in Australia ❤
Quinn, please contact the suicide loss groups and suicide prevention people. These UA-cam videos have made it crystal clear to me that my friend who took his life was autistic. Survivors deserve to know. Teachers, pastors, medical doctors, cops and suicide hotlines need to understand this risk.
They know already. It's widely known that autistic folks are at far higher risk of not only attempting but succeeding, than our allistic peers. It's not lack of knowledge but lack of will, of empathy or of resource that gets in the way, sometimes all 3.
@@Autistamatic I never heard it from Talk Saves Lives or SOSL Survivors of Suicide Loss. It should be a talking point on Crisis Lines, and would help survivors with their GUILT. I’m retired.
My friend Sam was autistic. He took his life because he lost funding for housing and had to move back in with his parents at age 26. His parents treated him like a child despite the fact that he'd been living independently and working just fine with some support from the local disability services. Infantilizing autistic people makes them less likely to seek out support.
It's too bad, that the World use(d) *punishment* to _deal with us_ and our unknown condition, but offer NO FORGIVENESS even after learning about its existence.
And alarmingly now it seems that they're on a mission to perfect in-utero testing to eliminate us before we're even born. Who is coming up with these ideas?
Thats society for you. Cold and heartless. And of course scapegoating those who dont fit in the box. It's truly sad.
Exactly. That's why I'm AFRAID of society now. After my last major burn out I quit making effort to tolerate it when an NT is rude or strange at me. I'm so done!
@@raven4090 It's a product of the ego driven Alpha-Beta hive mind, dismissing brilliance in deference to normalcy.
And normalcy is the height of Mediocrity. Safe, dependable and comfortable Mediocrity.
Most of history's most revered and admired figures were "anti" just about all things Social, preferring instead to focus their minds and energies to scholarly pursuits, either alone or with a single acolyte to assist.
The masses are a living, breathing metastasis of Judgement and Hypocrisy. Solitude has certainly been good to me, but we are still human and need to be loved, 🎶"Just like everybody else does."🎶
That said, interpersonal relationships have never been more strained or more DANGEROUS than they are in 2024. "Society" was just another utopian delusion designed to empower the Violent over the Coward and keep them in check with those _"champagne wishes and caviar dreams."_
Be you and live your best life, but while shedding the Pain don't deny yourself the Joys that can only come from vulnerability and surrender to the RIGHT "Soul."
Misuse of past tense. I am being avidly punished 7 decades after diagnosis.
Not only ignorance, but my parents were both struggling with their own depression and problems, and most likely were neurodivergent as well. That might be the case for many other late diagnosed autistics. Frankly, I blame my teachers and school staff a lot more than I blame my parents. My parents probably saw our traits and thought they were normal because that's what their own childhoods were like.
As for advocacy, I can only thank creators like you for helping me not feel ashamed or scared or hopeless about my diagnosis. Seeing autistic people being so open and honest and sometimes even proud about their autism makes me feel less embarrassed, stronger, and more patient with myself. I'm even making art and comics about my own experiences now. Thank you!
It seems probable to me that my father may have had ASD or ADHD or both. My mother was depressed, and two (me and my late older sister) of her four children are or were depressed.
Both parents were very systematic in their thinking. Up until now, as far as I know, that’s the best predictor of an increased chance for a child of neurotypical parents to be autistic.
Yes, the notion that kids are perfectly "normal" because they bahave like their parents, who don't realise that they themselves are perhaps neurodivergent. Learning what Autism is certainly makes certain family situations and ways of being make more sense that they did at the time!
In exchanging with other autistic youtube creators, I get the impression that for some of them at least, producing content and sharing it with others on here helps them themselves as well as clearly helping the people watching. It's a way of expressing ourselves to an audience who for the most part are there because they care and are genuinely interested.
Perhaps youtube is a way to be able to speak to people who want to listen, even if it's not face to face and in real time. It's a way around the awkwardness of having stuff to say but no-one who seems to want to listen. I think perhaps that's something many of us can relate to?
Art, in its mant forms, is a fantastic way of expressing oneself. Music is my thing, but I imagine you're able to get things out of your head and explore them with your artwork and comic making. I'm learning about song writing and music composition and it just makes me feel alive when I play music. Currently there aren't many things which feel like that for me.
I hope your art does that for you. Perhaps one day you might want to make some videos for youtube yourself and talk about/show/teach others how art can be a life tonic and help them sort through their thoughts and feelings to get to a better place?
Its helped me heaps too, just knowing why.
My dad is definitely autistic. It’s sad because he will probably never get that understanding about himself. I’m discovering this at a time when he’s already been a hermit that shut us all out for over 30 years. 😢 I wonder what his life would have been like if he could have discovered this for himself much earlier on. Would it have made his life better or worse? 🤷♀️
We have a very similar situation with our son as well. ❤ Honestly I would know absolutely nothing without these videos! Glad to hear it helps you too. I believe my son is embarrassed or doesn’t want to believe it either. We’re still trying to get him properly diagnosed… it’s been rough!
before i got diagnosed by a doctor, or recognized by my parents, a random stranger on tumblr diagnosed me as an aspie. :]
i made a lengthy vent post on my blog about my life long struggles with communication, self harm, school, and retaining/following instructions and they told me i should look into signs of autism in girls! matched me to a T. though my mom denied it, but a few years later i had the papers to prove it. Lol
the strange thing is that-
*A.* apparently my older sister (who basically raised me) had been pointing out that i had textbook development differences and difficulties since i was a BABY and should be tested, but my parents ignored her since she was a teen and there was "nothing wrong" with me.
and *B.* the moment my diagnosis became public, every aunt and uncle came out of the woodworks to admit they "had a feeling"!
it's so frustrating that autism is such a taboo topic that adults would rather watch a child struggle with a lack of understanding of the world & themselves than be the one to break the "bad news" that they're just different and need support.
I learned recently, from my mother, that my younger sister had soken to her about me maybe being autistic over 25 years ago (I'm now 47 and have recently learned what autism is and am on a waiting list for evaluation). My sister had been stufying psychology at sixth-form and came home saying to my mum that she thought I was autistic. Neither of them said anything to me however! If either of them had, I could have been diagnosed 25 years ago!! And not had to go through 25 years of wondering what on earth is wrong.
And yes, taboos and family secrets, frustrating.
My mum, when I told her I thought I was autistic, apart from telling me my sister had wondered that 25 years ago, said she thought I was perfectly "normal" because I was like her (!) in that I didn't fit in, I had very few friends, I liked to do my own thing, I kept myself to myself.... She won't entertain the idea that she too might be autistic. Taboo/pride I don't know. But the conversation is not worth having. If she's not curious, that's up to her.
And you know, it was only after I told her I believe I'm autistic and am going for an assessment (I only told her because I wanted her to fill out a parents' questionnaire) that she decided to tell me that I can't be because I'm perfectly "normal". She had spent the previous 45 years telling me I'm "weird" and "not normal", that she wished I could have been more normal! It's sometimes unbelieveable what other people can come out with. Even people who theoretically are supposed to be there to be supportive and caring, kind even.
I hope your new found self-understanding has helped you.
Before there was a label, my friend was sent to a residential school and suffered horrific abuse! At the time the ignorance was rampant and there was no internet for support. I know if I had been given a diagnosis as a kid, I would have hated myself even more than I already did.
@@matthewbucktrout3291 I think there is a denial that parents go to because they feel ashamed they missed things as a parent, which they take as a failure of doing their parental duties. And society as a whole does purport that and willingly points the finger of blame at them. I am saying often in the comments here on YT that noone knew this stuff back then, in the 1970's. So, I try to get people to be more understanding and compassionate.
Our own son was diagnosed at 17 with mild autism, and I was saying, "How does a parent go seventeen years and not know their son is autistic?" It could have been devastating had I let it. Remembering clues and then realizing, yeah, I should have known something was up. It did lead to my own diagnosis, so, with that information, it does lessen the blow. And he is "mild" so it is understandable after thinking about it. My experience was only with more "severe" cases. Now I see it all over the place and believe it is highly possible 1/3 of the earth's population is on the spectrum and it IS more "normal" than we think or want to believe. As more and more of us come out of the woodwork and the masking continues to stop, I believe what I say will be more evident. Time will tell.
Actually my back then boyfriend told me in 1988 that I am autistic.
We had just watched the movie Rainman in the Theater together. I was highly offended and dismissed it for the next 30 years, until my daughter read the DMS 5 and selfdiagnosed herself as autistic. She wanted me to confirm her view on herself by reading the questions to me. And all the while I was like: "Hey wait, that is me!"
Thank you for discussing this! This is something I think about a lot. As a child, I was minimally verbal (did not become fully verbal until my 20s), suffered from chronic pain due to sensory overwhelm, cried basically daily, did not have any real friends until I transferred to public school and met diagnosed autistic classmates, etc etc. I know my parents believe autism doesn't exist, but I often can't help but wonder what my pediatrician and elementary school teachers thought. Were they simply uneducated? Did they dismiss it because I'm a girl or because I was smart? How many people noticed, but thought it would do me more harm than good to receive a diagnosis? Ultimately, it doesn't matter, but I often think back to that little girl, struggling and suffering without accomodation, and wonder what justification each person had for refusing me proper care and accomodations.
There’s a risk of suicidal behavior, and this is why I will not tell my 30 year old son that I suspect he is autistic. Instead I will bring it up and talk around it.
@@you-tube-user-minimalThat is such wild reasoning, you think it's the label that carries that suicidal risk?
@@untzuntz2360 It could be a factor. It would be practically impossible to know one way or the other.
@@you-tube-user-minimal If he already have suicidal behavor/thougts, I can imagine that being told he could be autistic, would save his life. It will give him so many explanations of things in his life. Otherwise, it is probable that the suicidad behavior/thougts continue until he succeds. I would definetilly try for him to know.
@@you-tube-user-minimal The label of autistic will not worsen someone's situation, not knowing the truth is much worse. Not knowing why you feel the way you do, why your life is the way it is, why you struggle in almost every aspect of life compared to everyone else blasting past you. The reality of intense struggle autistic people face is what shortens our lifespans, makes us more susceptible to suicide, makes us feel like freaks that nobody will ever understand. If you can't even understand yourself, how could you expect others to? This will exist with or without labels, the label can help you find resources and friends and a support network which every single human being needs to be happy.
Hindsight can be a wonderful thing, but it's never around when you need it!
😢
I think they need to start referring to it as a difference and not a disorder. Our brains just operate differently.
I’ve noticed that all psychological issues are slapped with the word ‘disorder’. In comparison, we just have names for most physical health issues. ‘Diabetes’ not ‘diabetes disorder’; ‘cancer’ not ‘cancer disorder’, ‘myopia’ not ‘myopia disorder’… Hmmm.
Exactly 👍 I could draw realistic art before the age of 13 due to having synesthesia of sight and touch. When I look at the world I automatically pick up on distance/scale masurements, it's like having an seemingly infinite amount of hands constantly "feeling out" form and depth (it's extremely tough to explain but that's my best analogy at present). I'm also a "super recognizer" (always thought it was a goofy descriptor) and have memorized several piano pieces by finger placement alone without any piano training. Can also identify anyone based on their body movements, even celebrities that I've only seen in a film once. Also learned English from zero in a few months and could sound indistinguishable from native speakers accent-wise another couple of months later.
On the other hand, I can be quite clumsy in social scenarios and can potentially suffer from devastating panic attacks in large gatherings, probably from my brain attempting to analyze my surroundings in ways related to the phenomena above.
Currently pursuing an expert examination for ASD because I simply have no other explanation for my way of existing and having these Savant-like predispositions. Also, I think it quite telling and "Autistic-like" to state these facts even though neurotypicals would immediately perceive them as bragging or narcissism. Not many people realize the enormous toll these "gifts" have on our mental bandwidth and emotional health. They love to reap the benefits of our condition and call it "God-given", "miraculous" etc. but give the opposite treatment to the other side of the coin when in fact it is all part of the same individual and their struggles growing up in a world so seemingly incompatible with their neurological makeup.
@@catlifechannel3886Yup. Remember, homosexuality was considered a medically valid "disorder" up to a few decades ago. However, there's no "Vacuous Personality Disorder" or "Tribalistic-Hysteric Social-Merging Disorder" because a large amount of those traits are socially acceptable and even encouraged. Only in the most severe cases that disrupt the established order does the prevalence of those characteristics prompt psychiatric attention.
@@brianfoster4434 This idea has been proposed before, by people with more authority and better credentials than most of us on this thread have. I’m starting to shift my thinking on this to “probably” instead of “maybe”. Society needs neurodivergent people. I hope someone (including but not limited to some of us) starts being effective about changing this aspect of our society.
I probably won’t see it in my lifetime, but that’s because I probably have fewer than 18 (although probably more than 8) years left.
I also think it shouldn't be called a "disability" or a "handicap." It's just an alternate method of processing. I have trouble with nuance, sure. The allists I interact with probably don't understand math, but they're not "handicapped." 🤷
When I discovered that I was probably Autistic 7 years ago (on turning 60) and I told a friend that I was applying to get diagnosed, they said they already knew!!! I was flabbergasted and asked if they knew why didn't they tell me? So many of us Boomers were totally ignored or told we were difficult at school. I didn't think I was difficult, I was just bored. I was able to read before I started primary school at 5. I remember telling the teacher that I found their Janet & John books really boring and could I have something that was more interesting. Luckily, I used to pass a library on the way to & from school so I used to stop off there on the way home and read for hours. I found maths harder to understand because no one would explain how the relationship between maths and the relevance to everything in life was intermingled. I was a lot older before I found out about this. Had I known this when I was younger I may have had more interest in maths. My parents used to say I born asking the question why? But no one would actually explain anything to me. So, I have spent most of my life teaching myself.
Hey, you could have been writing about me, apart from I loved maths.
What about the SMELL of Janet and John books though? I can't remember the stories, but the smell, I can almost smel it right now just thinking about it. Opening the book and sticking my nose right in to the spine and sucking in lungfulls throug my nose. Mmmm.
Hooray for teaching ourselves stuff, at least then we get to learning interesting stuff and in as much depth as we like in the way that makes sense to us! Hope you get your diagnosis soon if you haven't done it aready. i'm currently on a waiting list and I really, really want it to be my turn, like last week.
Wow, I definitely relate to not getting maths because no one bothered to explain why this abstract stuff was relevant to anything in the real world!
I loved geometry and excelled at trigonometry. Algebra however seemed abracadabra, totally incomprehensible to me - until the same equations came up in economics classes and I had no trouble at all working them out.
The teaching method failed me, and no doubt many others, and I thought it was my personal failure - that I wasn’t smart enough. It’s taken decades for me to understand that I’m actually pretty good at maths 😢
I don't know if I'm Autistic or not...But also have a quest for learning! Love it
I was born 1995, diagnosed 2019. My mother; born 1965, diagnosed 2022. My brother; born 1998 and diagnosed 2003. My son; born 2016, diagnosed 2024. It's not only your age, but also your sex that influences your liklihood of receiving a proper diagnosis.
Family of psychos 😂 good luck with that
While not having a social media presence, I have elected to be visible about my AudHD in my work environment and have spoken frankly about it in group social online events. Going without a diagnosis for over 50 years was a struggle, but I've also learnt from coming out as a gay man over and over again, that advocacy never stops and you need to give people a real face and human story to learn from.
Some of my colleagues have non-verbal autistic children and I believe really appreciate those of us trying to pitch a flag on a new continent of rational acceptance and compassion. That is where they hope their children will live.
Thsnk you for sharing. I also disclose at work which has helped my career. My coworkers understand and play off my skills and they support the accomodations I need. I teach my autistic kids to accept themselves. The world's "better place" is improving because of disclosure and advocacy.
You can get a job😮
@@iluvyunieone of the biggest misconceptions. Of course, many can. Do some research .
@@iluvyunie It's the same with everyone.
All kinds of people can be exploited by the rich. But not everyone of us can handle the stress. That doesn't make us any less.
For rich people, neurotypical people are the easiest to exploit because most things are already good enough for them.
Autistic people who can focus rather well on their job, especially of they are not too outspoken about potential corruption (if there are any in their workplace) is also exploited. Especially if they are more oblivious to certain things.
I'm just taking an another perspective here, which is why I mention exploitation more than work. Because in some ways it is.
You're 100% right and thank you for doing all that you do in this world!
I am so obviously autistic that its unreal that it took until I was 62 to be diagnosed by a psychiatrist. This was just before Covid and I'm 66 now and although he took me through all the Autism 50 and DSM criteria, I am still awaiting my formal assessment. My dad, definitely his brother and 3 male cousins on my dad's side were all autistic and diagnosed (the cousins) young as they were boys and were more impacted than I was. I was just the painfully shy little girl who didn't like other little girls and would rather be with animals or have my face in a book. Its quite distressing as it caused a fair bit of actual physical abuse at primary school and many other things that made me feel "other" and "unwanted" the description "cold and detached" was one I got thrown at me my whole life and I often wonder if my parents would have seen me differently had I been diagnosed like my male cousins. Not likely though it was the 1960s and they seemed to think it was somehow sex linked. Its frustrating but I'm so glad I know why I am the way I am, so tied to routines, socially anxious and almost anti social, in that I prefer my own company or that of animals and don't want people, apart from maybe one or two others in my personal space. Relationships have always been strained as I was always being accused of coldness and disinterest. I can however live with people if they are like me, in that they respect my boundaries and don't need to be in my face 24/7. My partner now, although undiagnosed would surprise me if he was found not to be on the spectrum as he likes his own space and we get on fine, albeit in 2 different rooms except for mealtimes. Lol! Theres obviously some sensory issues, especially loud sharp noises that I cant stand and having to have clothes without tags, just printed labels on the inside of the actual garments. Theres stimming, which I thought was just something I did whilst waiting or talking to people. But the "otherness" and alien-ness and not wanting to communicate with girls my age, boys were somewhat easier but any social intercourse was harrowing. Thanks for this as its explaining why I slipped through, I really think you are correct about age being the main thing.
I’m 63 years old and relieved to understand the basis of the 24/7 struggle. So many years lost spent on therapists, who never ever suggested Autism. Damn the professionals!
Born 1958, diagnosed last year with ADHD and autism spectrum disorder. They run in my family but I did not know until recently. It is hard to explain to people why I was not diagnosed in childhood when my symptoms were very clear. They do not understand what masking is and how well persons with a high IQ can mask. But masking helps only to avoid bullying and censure and social isolation. It is costly: depression, anxiety, eating disorders, panic attacks. All kinds of mistakes, tensions and troubles one does not really know where they come from. Feelings of alienation and loneliness that nobody understands. Until one gets the diagnosis. That is why I got it - finally.
Even as an adult my diagnosis was delayed by the "kindness/stigma" issue. Finally figured it out for myself this year (officially diagnosed last week at age 38), and when I mentioned the idea to my mom, she said "oh yeah your aunt and I have suspected that for at least a decade".
For the duration of that decade I've been unemployed and struggling with fatigue and mental health issues (probably including autistic burnout), so thanks for keeping that potentially crucial information from me.
As a highly intelligent AFAB person born in 1988, I didn't stand a chance of getting an early diagnosis, despite definitely showing clear signs throughout my childhood. I'm glad I know about it now, though, because it has really helped me understand myself.
I am autistic, I was born in 89. I wasn't diagnosed until I was in my 30s. My grandmother (I spent most of my life living with her) told everyone that I'm not autistic I'm just retarded and emotionally disturbed. It wasn't until my 30s that people started to take my thoughts about being autistic seriously.
What was my grandmother's reason why she thought I wasn't autistic, you might ask? I talk. And as a kid I talked a lot. Turns out it's normal for autistic children, especially when talking about special interests. I would obsessively talk about these things.
I diagnose your grandmother as a jerk.
I’m 21. I wouldn’t have been diagnosed had psychology not been my special interest. In February of last year, I happened to be reading up on the female presentations of autism. Then it all clicked. I read book after book. Got myself an assessment. Lo and behold… I was right. So in a way, my autism saved me?
In the late 1950s, my kindergarten teacher wrote in my report card that I was "aloof". My late teens through early 20s was horrible. No ability to 'adult'. For decades I would say that I must have been clinically insane during those years. I also felt there was no way for it to have been different. About 5 years ago, at 65, I got a diagnosis of ASD and ADHD. Now I understand that I wasn't crazy. I was undiagnosed and unsupported autistic.
Thank you for discussing how age has a lot to do with whether or not you even had a chance of being diagnosed. I have 2 sons. One is 24 and born in 2000, the other 17 and born in 2006. The eldest only even got an ADHD diagnosis even though he is a textbook case of autism. The youngest went in for school accommodations and walked out with an autism diagnosis. Just that 6 to 7 year difference in age made a huge difference in diagnosis and accommodations. Gen X and previous generations never had a chance.
I sometimes wonder if I would've been diagnosed at school if my mum didn't fight against the school saying that there was something wrong with me. She worked at the school I went too and from recent conversations it was causing issues with her job because the teachers was always complaining about me to her and my mum eventually made me move schools and my life fell apart after changing my school to an environment that was drastically different. Plus I no longer had my mum at school. I was seriously bullied in my 2nd primary school but I kept quiet up until the police got involved (something seriously bad eventually happened in my 2nd primary school involving an incident of sexual abuse from two brothers who bullied me, I think looking back the abuse was almost like gay shaming). I tried to stay quiet about it because I was scared that it would upset my mum, plus I never knew being gay was "wrong" until that happened (which it isn't!). The police asked me if I wanted to talk to them without my parents present and I said yes and told them everything. They recommended to my parents moving me from that school and told them I was being seriously bullied, in my 3rd primary school it was a Christian school and the kids was actually nice there. My paranoia and distrust of people from my 2nd primary school never disappeared though, plus the hysteria caused by me being "gay" that made all of my "friends" shun me. Through the remainder of my time in school I was always scared that if anybody ever found out I was gay my world would fall apart again and I would loose the friends I struggled to make. It also never helped that the brothers family was investigated by social services and they almost made it their job to destroy my life.
I was born in 1983. Was told repeatedly by adults (teachers, family, family friends, etc) that I was weird, unsocial, hypersensitive and many other things, and that I had to "adapt", to "fix myself". Now that I've been oficially diagnosed (last year), people tell me I'm just seeking attention and dismiss me. So yeah.
IMHO much more important than being accepted by society for us is to accept ourselves. Diagnosis can help with that, but it will not help with the negative feelings NTs get in our presence.
Ignorance is a huge one. I'd never thought about it until my therapist suggested it, mainly because I had my own ignornt ideas about autism. Thanks to you and others, I am less ignorant. Even though there are a couple of studies which contend that the incidence of autism in people with certain congenital blindnesses such as rubella, ROP or Leber's Optic Atrophy, similarities get passed of to the blindness and ignored. I'm extremely curious about what my assessor is going to unearth hwen I finally get to see her. I'm expecting every reaction from none to horror, having already received the latter from someone whom I thought was a dear friend but who did not take kindly to my calling out her ignorance. Keep in shining. 👏👏
The good old days was a myth for boomers on the spectrum.
😢 I should probably also QFT (Quote your comment For Truth).
+
You got that right!!!
A myth for all born before about 1983. Many also forget that physical punishment of children was the norm before then so the downside was greater than just lack of diagnosis.
@@51elephantchang the good old days when everybody pretended to be normal? I can imagine food allergy deaths was put down to something like "choked to death on food". When I had my first reaction to nuts it felt very much like I had something stuck in my throat. I've heard people say that people didn't have allergies in "the good old days". I can imagine it was more "ignorance of" rather then "lack of". I've experienced people believing I'm just being awkward when I ask about ingredients, I even had an argument about a homemade cake containing nuts while having a reaction with them insisting "it definitely doesn't have nuts in!" acting like I'm being crazy for having a reaction. I dread to imagine what it was like "in the good old days".
49 years old and finally connecting the dots. Thanks for the information!
It might be that the autistic person is usually not the only autistic person in the family. Therefore, it appears somewhat ordinary to all those who might care. Also, I have a theory that autistic people are drawn to other autistic people for companionship. Also, the autistic approach to life may have never been the dominant one so it's not in the interest of the dominant paradigm to draw attention to the fact that a lot of us are deranged by it.
For parents that are finding they are taking their kids for medical tests where there appears to be no definitive result - try autism. Strange circulatory problems. Eyesight issues that aren't explained by the standard eye tests. Alarming double jointedness. A child that keeps damaging themselves by sitting too close to radiators or scrubbing the skin off their legs with the pumice stone you told them to use. Vomiting or loss of consciousness when exposed to certain perfumes/products. Colic long after babyhood. It's not just them being a bit special.
Add stomach ulcers, digestive problems, hearing problems, insomnia, fits of seeming rage (meltdowns), allergies, and more.
I’m approaching 70. I discovered I’m autistic about three years ago.
That actually made everything worse, because it all but destroyed the ‘false ego’ and personal narratives I had created to cope with the bewildering communication problem.
Sure, I was fooling myself, but I was also maintaining some hope for positive outcomes.
It also crushed my hopes and plans, as it seemed to imply that there was no way I could ‘adjust’ my style to resolve those issues - because it is much deeper than just a behavioural style.
I have isolated myself completely, to avoid the problems and misunderstandings, which is killing me - possibly literally.
What to do ? I don’t know.
I don’t trust anyone at all anymore.
Which is even worse than fooling myself that things are OK, or getting better.
Waking up in the morning is now a huge disappointment. Every day.
I don’t even want to relate to people who seem to like me, because I realised was a sitting duck for the manipulative narcissists who had made my life a misery by using and then discarding me.
Any suggestions ?
A neurodivergent counselor who specializes in late autism diagnosis, coping mechanisms, depression, C-PTSD, autistic burn-out and IFS (internal family systems) therapy. Also look into ketamine treatment, and or shrooms. Check out online support groups that can be offered through the Arc. Keep educating yourself about who you are as an autistic individual through watching videos such as this and reading comments. Finding and creating community, even if it's through a Zoom meeting with your camera off, is comforting in knowing that what you're struggling with is real, valid and your suffering is due to how society is flawed as you are not.
I hear you.
Contact autism charities, they can help a lot and maybe see if they can help you find an autism group to support you and find people who will understand you. Good luck!
@@minacarolina7671 Thanks. I’ve very recently kind of adopted a neighbour’s cat, which is ultimate autistic support and the best company. The neighbour is quite happy bout it too, because I can look after the cat while he’s away. I’m not being at all flippant btw. I have excellent relationships with cats.
i requested my evaluation in the hopes that i could get some aid where i have trouble "dealing with reality." but on the way to meet the psychologist to get the official result i realized it would be one of two things...
1: i was autistic, and could not be "fixed"
2: i wasn't autistic, i was just really ***ed up, and had to face a long, daunting road ahead of trying to work through years (i expected) of therapy. (and at this age, who has time for that? i could be dead before i get through it :X )
but i'm glad i fell on the autistic side. i haven't gotten any aid yet (that process itself is brutal), but just knowing and understanding has helped me be able to cope more.
you may find, like i did, that researching autism and reading about it can give you insights into how to help yourself. my psychologist recommended
"The Autistic Brain: Thinking Across the Spectrum" by temple grandin (she has a bunch). and i want to point out to you something she points out emphatically in this book... instead of focusing on what austics can't do, focus on what you CAN do. maybe i can't give a TED talk, but i can certainly write a blog. (actually... im terrible at keeping up with blogs. but as an example!)
she also recommended "Neurotribes," but i think you should avoid that one, as it was VERY depressing. if you can find it at a library, maybe just read the last chapter, because that was good.
also good is "Self-Care for Autistic People" which covers many aspects of life (relationships, jobs, and general physical and emotional health).
if you have discord, there are autistic interest groups. ASDirect is one i belong to. just chatting and meeting with other people like you is SO much of a relief, i can't even explain it. i talk online more with my friends and all, but they don't 'get it' the way other autistics get it.
were you also diagnosed with co-morbidities? those are things that can/could be "fixed" or alleviated. i'm tackling my social anxiety, and learning about more problems like emotional backdraft and fawn response, which i struggle mightily with. as for depression, that was no big surprise, i've been living with that forever.
important rule: never, EVER, make life-altering decisions while depressed.
i believe you can come to terms with things and have a good life. i've been trying to 'fix' myself for decades, but now i can see other ways of dealing with things, that will actually work for me. you could, too.
My mother knew I was autistic, but didn't get me tested as she was on the run from social services. She told social services that I was outwith parental control (with-holding anything about suspected autism) and I was put into a residential school. She would rather wrongly tell everybody that my autism was mental health problems to get out of accountability.
@@undertheradar001 I'm sorry.
"He's just shy" -my mom. She didn't have bad intentions, she most likely didn't know, but she made me hide it until I failed at school and at life. THX MOM🎉
Was/is she autistic? As my mom ages, her autism is more revealed
Fantastic video. I type one handed as I am mixing a cup of cornstarch with half a cup strawberry conditioner to make moon dough. It’s 10:30 pm. I am in a nearly dark kitchen. Our 4th daughter I KNEW at age one. Dr sent for evaluation at age 2. We were waitlisted years. She was DX anxiety & ADHD at age 8. I requested again at 11. She was DX just before 16th bday. She always homeschooled. Even w gifted IQ we knew she could not handle a crowded public school outside Orlando, FL. I realized after her DX asked asked me questions that she thought I should be assessed. I am trying at age 46 to find someone to test me. We have PPO insurance. I have spent 25 of 28 yrs as SAHM. I am SO clearly what was once Asperger’s. But masking& skills I was taught can make it hard to know how badly I struggle most days.
I'm 56 and I was only just assessed for autism at UCLA last fall despite being diagnosed as having a mild learning disability with a high IQ in 1973. For most of my life I, and apparently most other people, assumed I was merely a high-functioning weirdo rather than Level 1 autistic. After going through the clinical assessment and processing the news for the last nine months, I've come back to the self-perception of being the high-functioning weirdo like always. I'm okay with that. The only thing I've consciously worked on is reducing my habit of over-explaining things to others. (and I recognize that I've rather failed at doing that here)
Hi Quinn, just found your channel. I am a 51 year old female and am just going through a diagnosis assessment for autism. I have struggled for years and now finally realise why life has been so hard. I have masked and tried to fit in but it took a toll with anxiety, depression and CPTSD. I am so grateful for people like yourself sharing video's like these to help people like me who are just learning about the full impact that being undiagnosed has caused in their lives. I enjoyed your fact filled vlog and the 80's tv/music references made me smile. 😊I look forward to binge watching some more of your videos.👍
This background you have for your human self with the dark colors and shaded green/blue... is much better on my eyes, thank you.
As a GenX with Boomer and Millenial autistic relatives who tick all three boxes this is a great summary and spot on! Thanks Quinn 💜
I'm slightly younger - on the younger side of the millennial group - and I was diagnosed last year, at 30.
Part of the reason autism as a diagnosis has been applied to more people is that the definition has expanded - rather than the rather restricted view of autism from the 1940s, there *is* now that broad spectrum of autism conditions, and there's recognition that what was called Asperger's syndrome is, in fact, an autism spectrum condition.
Part of the reason for the stigma is overgeneralisation and conflation - there's an assumption that autistic people are universally the highest-support-needs cases that some autism charities like to point to when they're doing their fundraising, who typically also have what are sometimes called intellectual disabilities, and that assumption does lead to one thing that some autistic people report getting quite a lot of: "You can't be autistic, you're too smart". I did quite well in school, and that fact probably meant that the tests that might have picked up on it were never applied to me.
As for family, the signs were there - a lot of my parents and grandparents were early readers, as was I, a trait common in autistic children. Of course, *because* so many of my close family was probably autistic, the way I presented was just... normal, to them; the idea that my learning to read before entering school and reading at a significantly higher level than most of my classmates was indicative of a neurodevelopmental condition rather than simply being me doing well at academics would have been, understandably, something hard to fathom.
So, yes, stigma and lack of recognition would have played a part, but I think it's also important to recognise the environment *around* the person.
Similar age and story to you. Dunno if it's similar for you but in my area there is also this weird stigma lately that "everybody wants to to be neurodivergent" as if we're all just making it up in order to feel special, or maybe feel validated for not fitting in? I dunno but as long as people are gonna jump to conclusions it's always gonna be a bit of a gamble to "come out"
@@benja_mint people who think that people are making it up haven't thought deep enough. Why would I want a label of something so misrepresented and stigmatized if it didn't somehow explain how I already felt? Discrimination is a result of short-cut reasoning; its sadly still pretty common.
Born in 1971 Uk. I hated school especially primary school. I had a breakdown when I was about 6 or 7 and depressed all the way through. I had to see a specialist person who was a psychiatrist, with no explanation at all. So called out infront of class to go. This happened into my secondary school. I got put on a thick table and also made to sit on my own. I hated the noise of school, the interaction and everything. Being told I was stupid, thick, disruptive, told to pull my socks up and get on with it and only interested in the things I liked. I got diagnosed in 2019 with Autism and 2022 with ADHD as my Autism assessor noticed signs of ADHD with me too. I'm glad for diagnosis as it made realise that I wasn't thick, lazy or difficult. Infact I was trying harder and putting more effort in probably more than most.
That's funny you bring up Rainman. I remember watching that movie and realizing I had a touch of that. I was 11 or 12 at the time. Really helped dodge the diagnosis until I was ready, 30 plus years later lol.
I met somebody who was diagnosed with autism when I was about 15 years old and realised they was very much like me. I didn't realise at the time that masking was a thing and often gaslite my own feelings so never really processed my own feelings. At the time I just told myself that I was making up excuses not to follow all these stupid social rules but I could never forget what I had discovered, I did allot of research from that time and talked to a doctor when I was around 19 to get a diagnosis. I did get referred to a psychologist but also got sent to a councillor, I did 2 sessions with the councillor and was so stressed out from the experience and couldn't deal with it so I just dropped the whole thing and didn't see the psychologist. I'm 32 now and I'm finally on the waiting list to see a specialist. It seems like the understanding around autism has improved allot since then. Hopefully I haven't been wrong for 17 years 😅
Entered school '83 in Germany.
Back then, they obviously recognized when you had issues.
But they would first try to make you conform well enough to somehow survive school before diagnosing you with anything.
So if you were not one specific phenotype, you wouldn't be found and would somehow go on blundering through life.
Another factor: The parents of us back then grew up with the mindset of: "Are you calling me crazy?"
Especially in Germany, after what the Ns did, you can probably understand why people had a strong incentive to try staying out of the medical system - and keeping their kids out as well.
Now I'm 47, and I'm getting suspicious results on all the available tests on the web ...
Makes you wonder.
Thanks for commenting. Back then people certainly noticed our differences, but they didn't have a name for them. It wasn't until the late 90s that knowledge of there being an autism spectrum became widely known and accepted and even then, most people today still don't really get what being autistic means.
@@Autistamatic, I was a "calmer" presentation.
Teachers recognized that I was isolated, that I had difficulties making contact and stuff like that.
I had trouble following class - maybe auditory processing issues. I'd zone out, and when asked something, being like "huh?" all the time.
So oral work in class I got bad marks all the way through school (just stayed in my head basically), which I made up for with written tests.
I had a hard time working for classes that didn't interest me, got better results in a very few subjects that did interest me.
Sucked at sports. Good at musics and languages.
Always at breaks I hid on the school yard in some calm spot, together with one or two other people who also didn't enjoy running about making noise. Always last to return to class, while the classmates were still being monkeys.
I always yearned for the moment school ended and I could go back home, to my room, doing the stuff I loved, like videogames, watching anime etc., either alone or with one or two very close friends who shared those interests.
Occasional meltdowns, but almost exclusively at home. Around adolescence I turned inwards with that, becoming depressive basically. For a while, things would always go smoothly, then I'd have low times where I couldn't perform anymore, and the results tanked.
For a few years, I experienced bullying in school. I basically neither understood nor cared how to behave like the other kids, how to be in style. Dressed like whatever, stuck to my hobbies, didn't go for the other sex as early ... And we can't have that, can we?
No one back then would have called that autism.
@@user-nm3ug3zq1y This sounds exactly how my school experience was in Germany in the 2000's. Other kids picked up that I was different and called me retarded, and a case for Weinsberg (a local town nearby with a psych ward).
The 1 or 2 friends I had were false friends who only invited me after school, and pretended not to know me otherwise.
One time when I was the last kid skipping back to school building after gym class, I was seen as suspicious cause I seemed happy and had my backpack checked at the principal for a gun. In case I was planning to shoot up the shool. Mind you, in Germany where that was rare!
Cause teachers knew I was a quiet kid, a strange kid, a loner, also with a troubled home life (single mom was an alcoholic).
School never helped me. No one wondered if I was autistic and had trauma.
I was diagnosed age 34, after an autistic facebook friend picked up I might be autistic
@@catxtrallways, funnily enough, musical hearing is maybe my strongest skill.
Have two conversations going on at the same time, and you immediately lose me.
It's just not the same, isn't it?
In my case, I'm not so sure about ADHD - I only get moderate symptoms on tests for that, and mostly in the areas that would also light up with autism.
The other factors, like sensory overload, do sound likely though. This also got worse when I felt really threatened, like in those bullying years, and it got somewhat better as soon as I got more freedom with picking my classes, the students were a bit more grown-up (calmer), and also fewer.
And PDA feels like a strong factor in my case. I simply didn't decide to be in school, so I basically just sat there and thought about where I would prefer to be, what I'd want to do.
EDIT: Just did a PDA test and got ridiculously low scores, far below the threshold!
So maybe not that after all, but the usual dynamic of strong drive for autonomy, monotropism and interest-basedness.
@@sabserab, I'm shocked that "retarded" was still a thing at that time.
In my generation "Spasti" was the favourite word of many, used for every way of different. Next to "schwul" obviously. (Seufz.)
Fierce, man, the issue with the "gun"! Way to help troubled children with their troubles.
I'm happy to hear that you figured it out after becoming a grownup!
And blessed be those who spot us and tell us in the right moment, while everyone else is just raising an eyebrow or looking the other way!
Even in 1993 and 1994 it was still being missed, i had a full children's psychiatric assessment at that time spent 3 months in hospital. i had to work it out myself nearly 30 years later and get a diagnosis.
I went through life struggling with feeling like I didn't fit in and feeling like I was not a "proper" person (still do). Then, earlier this year I was assessed and then diagnosed as autistic at the age of 57.
I don't know how it was elsewhere, but here in the UK, when I was a child, autism seemed to always be portrayed as some mysterious, almost alien phenomenon, and therefore, perceived as such. Therefore, I had zero chance of being identified and recognised as autistic. Of course it's now known that autism is hugely diverse and nuanced, and unique to each individual. After my diagnosis, I experienced an odd combination of relief, pride, and self recognition, but also anxiousness, feeling like a fraud and utter confusion as to who I really am and whether I could ever be at peace with my new found "identity". Let's say at the moment I'm trying to "manage" my feelings and taking it one step at a time. Anyway, thank you for a great video.
I have been called "weird", "loser", "anti-social", "smelly", etc. I have been ostracized and the target of bullying (physical and verbal). I was not good at many physical activities (also did not enjoy them) and went out of my way to avoid them. I spent many days crying in the bathroom during class time and getting a poor attendance record as a result. One year I could spend most days not talking to a single person, including the teachers. I went through this without any diagnoses of autism. Since those years my life has been a mess and I have dealt with depression more than once and my poor health has nearly killed me. I don't really care what anyone thinks at this point. I feel relief and a better sense of self than I have ever felt before. So much makes sense now.
"Just try harder" "youd be late to your own funeral" "just spit it out" "youre just being lazy" "get to the point" common phrases ive heard throughout my childhood and into my adulthood. The sensory overwhelm is real, the anxiety is real, the executive dysfunction is real, the self hatred becomes real too. Thankfully since getting to know myself sober, its opened up a world of compassion and acceptance of myself which has replaced a lot of the self hatred. There is hope. Dont lose heart.
Brilliant video as always, Quinn. Love the nod to Tales of the Unexpected (great dance) 😄💛
I knew that theme sounded familiar. Cheers. 😊😊
@@kyleethekelt Yep. It was a nod to "Roald Dahl's Tales of the Unexpected". There's a recreation of the show's logo as "Tales of the Undiagnosed" in the title sequence too, though you've been spared my undignified writhing silhouette behind it😂
@@Autistamatic Loved the Adam Ant nugget too!
Because I'm Gen X.
I wondered for 10 years before finally getting diagnosed a few years ago. It's been so good to know and be with community since. 💛
I’m in the over-50 bracket. I’m also multiply exceptional, being gifted. That giftedness absolutely hid my autism and adhd. Funnily enough, so did my strabismus (“lazy eye”, but not really. Having eyes not quite pointing in the same direction means people don’t make comments about making eye contact. 😂 Since strabismus is a neurological condition, it’s likely related to a neural divergence.
As soon as I heard about “Asperger’s”, it seriously resonated. I was still masking heavily, so I didn’t see a reason to pursue it further. It wasn’t until the last few years that changes at work pushed me into burn out that I had to understand myself better. Still working on that part…
I was diagnosed when I was 7 and NO therapist or school board member wanted to acknowledge it, It was almost like I was radioactive throughout my school career. they usually just threw me into remedial classes and I had to learn on my own.
I was diagnosed at 56 yo. 4 years ago. It was a shock. It sort of made sense. I was academically very good so I am sort of glad I was not diagnosed in my school years. I was bought up in a rural city on the edge of the desert with people of generally conservative outlook. I would have been treated like I was really deficient which would have been a real set back for me.
I would have really liked to have known in my uni years/or after graduation and entering the work force as I would have made different decisions and in particular not tolerated what I now see as others abuse. I definitely would not have internalised this as self-blame and understood it for what it was:projection. .
In the 70's, I used to hide in a corner on the playground and throw gravel at children who tried to interact with me. My report card said I was "extremely shy". Now, it's clear to me that I'm on the spectrum. I have meltdowns when I can't be alone in silence. Can't stand noise or chatter. I mean, I really can't stand it. If I would've had parents and teachers who understood, life would've been far less difficult.
When I was in my teens (I was born in 1982) my mother learned about Asperger's at work and said to herself "that sounds like my son". Unfortunately, she never told anyone. Finally I got diagnosed at 39, she still didn't give me an explanation for why she didn't tell me.
For me it was my sister who told my mum she thought I was autistic. Sister was studying psychology at 6th form, this was about 25 years ago. Neither of them said anything to me! I'm now waiting for an official evaluation after discovering autism and myself as autistic by myself a couple of years ago! Families eh!
My son went to a huge comprehensive from 2011. Displayed typical ASD traits. School pastoral team thought he might be dyslexic (very trendy at the time). He got into trouble (exclusions) and teachers always said he needed to participate more in classes. Neither the pastoral team or teachers or even CAMHS mentioned the word ‘autism’. So we were none the wiser. He’s still on 3 yr waiting list for an NHS assessment.
Over the years i was told by countless employers to "Just get myself together", or to go find another job, while i did a really great job.
They never explained what they meant by "acting normal", yet went out of their way to make sure i knew i wasn't one of them.
I had seen several therapist for a few years and not one of them picked up on the fact that I'm autistic. I actually diagnosed myself in a way. I saw a movie in 2017 with the main character being autistic. I went back to my therapist and asked her to find me a place to test me for autism. I was 60 years old before I got tested and diagnosed with autism and ADHD, I'm 66 now. I think things haven't come very far with autism in the last 30 years. Scientifically there may have been some advancements, but the average person or average therapist is as uneducated as they were 30 years ago about the whole subject. Even a woman who heads the disability department at the university where I went to get a masters degree a few years ago called me mentally ill right to my face. Autism is a complicated issue, but it seems like nobody puts any effort into understanding it, including therapist. When I asked my family doctor for a referral to the place that diagnosed me, right away he said, "you don't look autistic." That's bad when even a doctor has no clue about autism.
Hard to ever trust anything that doctor tells you after that comment. I am 62 and it is obvious to me I am autistic (my daughter diagnosed in her 30's as her son has been diagnosed with ASD since he was 4) - I would say my father is also - I wonder if there is any benefit of getting a formal diagnosis at my age
@@kathygore6615 I would want to know for sure at any age. I wish I knew when I was young, I'm life would've been a lot easier.
One thing that I feel that had a major effect, was being born to parents who grew up as children during the war. I don’t think any of us will ever understand and I don’t think that even our parents realise just how much what happened to them during the war effected the way that they were towards their neurodivergent children
Which war specifically? Curious. I have some theories around this as well. My dad's parents had ten children. The tenth was born by the time my grandma was 38. When she was pregnant with the fourth, he (grandpa) was drafted and shipped to WWII. He received the news that his fourth child was born; he did not have to go. He was already on the east coast (we live in the midwest). He went anyway. I can't imagine having ten children. I can't imagine any of that life. I can see the effects of it in all of our family. Incredibly talented, smart, funny, kind and broken people.
Im only 28 but I grew up in a small town, I don't think my family or anyone around even knew what autism was beside the name; looking back they've always described me with all the classical things "quiet, naive, struggles with communicating, avoids eye contact, gets way too obsessed with things" etc etc, but I was told to just talk more and try harder
Part of me wants to be upset that I wasn’t diagnosed when I was sent for evaluation after evaluation in the 1990s with no conclusion about what was “wrong” with me. No one was pretending not to know, they genuinely didn’t know. Yet, the label might have done more harm than good at that time with how much misunderstanding there was (and continues to be) around autism. As an adult, I am able to navigate that much better than I would have as a kid. However, it might have saved me from the belief that I was just broken with no explanation, except some moral failing or demon possession (yes someone suggested that). So it is a mixed blessing.
Despite all that, my mother labored to identify where I struggled and why even without the help pf a diagnosis, and found strategies to help me cope with the neurotypical world. In some ways, having no label kept her from being biased about it. She told me, “it’s like the things that other people don’t notice you notice and it takes you a while to process it” and she said, “you take a longer time to adjust to changes than most people. As long as I give you space and warnings about what is going to happen, you are fine. I know you don’t mean to cause trouble and I want other people to understand that, too.” And many other things. I am so glad I had a compassionate mother. It was the school and psychiatric system that really made my life hell.
since I have been thinking about this alot my first responses to even just the title were: "they did notice, but they didn't know it was autism + denial and ignorance" people would rather blame me for my "oddities"(aka considering it intentional) or play it down as just being quirky if I complained about my issues, than consider that what I had been talking about would be valid in some way.
For others I seemed "unique and interesting" which is also not necessarily comfortable, because I don't want to stand out and as a child I was so chronically overstimulated all the time that I just wanted to be left alone and wished to be "just average and like everyone else" so I wouldn't gain attention for things I didn't even know what I was doing that was making me stand out so much...-.-
So people definitely noticed....but they didn't know what it meant (and maybe some didn't want to know)
40 yo late diagnosed here. Great video - thank you
Really appreciate this, Quinn. I'm 52 years old, and I only figured out with the help of my therapist that I am autistic a little over a year ago. I've also recently been diagnosed with ADHD. Looking back over my life, I have mixed feelings about not being diagnosed earlier in life. In some ways, I think it may have been helpful to be afforded some accommodations. But having some sense of the stigma against autism (or anyone who was different from the mainstream, really) which was so prevalent back then, I'm not sure how beneficial having a diagnosis would have been. I suspect I also would have been denied a number of opportunities I've had without the diagnosis. My sense is that society is slowly becoming more understanding over time, and truly science is only starting to understand autism and all the ways it presents, so it may be more beneficial (or, rather, less harmful) to have an earlier diagnosis now than when I was a kid. Even now, though, I feel conflicted over whether it's a good idea to reveal to my family and others that I'm autistic. I'm not sure whether the arguments and educating I'd need to do are worth it.
Yes, lots of interesting and pertinent thoughts there. Perhaps my notion of wanting to invent a time machine to be able to go back 40 odd years and re-do life with an autism diagnosis in my pocket is a little naïve. The time maching might take e back and allow me to understand me better, but it wouldn't change the world around me. I would still have been me and the world would be the same world it was at the time - with its ignorance, prejudices and hostile people and bullies. Yes, it would probably turn our to be a very disappointing let down in many ways. And to be fair that's the main moral of the story in many time-travel stories isn't it.
Probably better to let the past stay in the past and just focus on what's left of the future (talking to myself, I'm 47) and do more of what's fun and meaningful instead of trying to invent a time machine to go back and do the first half of life properly knowing who I am.
I guess what you reveal to other people is entirely up to you, if it feels right and there's an opening, then perhaps it is the right thing. If it doesn't, then don't. Perhaps it depends on the strength and kindness in the relationships you have with your family and other folk.
Lots of issues and feeings to work through aren't there. Lots of what-ifs and buts.
*raises hand very meekly at 47 years old:* I do not have a diagnosis. But it has slowly become important to me to begin assessment because I have A LOT OF QUESTIONS about why I am the way I am. I was one of the "gifted kids" until I would not behave or work in high school, to the point where I had a huge breakdown finally.
I'm *fine* today. I can't say one way or another if I'm good or bad at masking. But when you talked about the timeline for the probability of having been selected for assessment, it really resonated with me.
In the last couple years my attention in life has really drifted to the awareness of a spectrum like autism, and the history of how people have been treated and mistreated in the foundational past, and in the name of science.
It drives me up the wall to think that I might have born at just the right time to fall through the cracks, lol.
Very thoughtful episode, it's the first time I've watched you, I'm looking forward to watching more of your videos!
Thanks for commenting. I'll link you a single video and then a short playlist which I think you might find useful, interesting - maybe even cathartic:
The video:
ua-cam.com/video/NKYM_5wfmuc/v-deo.html&pp=gAQBiAQB
The Playlist:
ua-cam.com/video/NKYM_5wfmuc/v-deo.html&pp=gAQBiAQB
I was born in 1965 and I am convinced that a diagnosis would have been very bad for me. In the sixties and seventies, doctors in Germany did not shy away from putting children with psychological problems in homes. I personally overheard a conversation like this at the doctor's: "You're going to have trouble with this one, you have to give him away." Last year a user here on a UA-cam channel noticed me: "You could be demisexual, take an autism test" What can I say, I looked at the test when I was 58, oh god that's me.
That happened in the US too. I have worked with people who have lived in those facilities and the trauma they live with is more impactful on their lives than their disability.
I recently learned that 70% of (both genders? of) neurotypicals self-identify as cisgendered and heterosexual, while 70% of (both genders? of) neurodivergent folk “don’t”.
I have two grandnephews who are each the other’s brother. The older one is neurodivergent and thinks they’re still too young to decide whether they want to be a boy or a girl. The younger one is neurotypical and pretty sure he is and wants to be a boy.
(Both are still too young for the question of sexual orientation to even come up yet.)
Yes, I suppose that's the disappointing reality flip side of time machines isn't it - it's a bit superficial-thinking to imagine that getting a diagnosis as an adult and then going back in time with it in my pocket to do childhood again decades ago would make everything perfect. The world was what it was, the other people were who they were and fundamentally I would still be me, even if I did understand myself and my quirks a little better.
yes, time machines are a double edged sword, just like in all the time-machine-y stories which have already been written...
@@Rabenov-wq8qy2qg5t wow. They had trouble with me (and still do) but I wasn't diagnosed. It's hard to emerge a winner at this
@@tomhchappell At least kids these days are given a choice, I'm an older millennial from a non-English-speaking country and I was taught that my body decides my gender not what I think or feel. I never thought even I could question it. At least I don't mind my body, unlike people with gender dysphoria. But I hate how society claims that my body should decide what are my interests, my role in the society and in the relationships, even the way I speak, feel or show emotions. From the young age I was immersed in the culture "girls play with dolls, boys play with cars" and I kept questioning: why? How is that related to whether someone is a boy or a girl (or apparently nowadays there are other options, like non-binary, demi-gender, gender-fluid, etc.).
I don't even know what my sexual orientation is, I never felt the desire to have sex with a specific person, more like had ingrained the teaching of the society that "people in romantic relationships should have sex" so I did and I can describe it as "fine, but not the thing world should spin around no matter what people claim". It's like, if you eat a tasty meal, the experience is okay, but would it be worth dying for? Killing someone? Ruining your life for? Nahhh. Because of that, I can't even be sure, what gender(s) I'm attracted to, I could imagine myself in a relationship with any, as long as they don't expect me to be overly enthusiastic and "romantic" about things.
Thank you for this. I’m 51 and have always struggled with relationships, communication and emotional dysfunction/regulation, including the occasional meltdown. The autistic element has, for me, been overshadowed by family related problems that caused anxiety and depression to need lots of firefighting, but after lots of therapy and self work the layers of the onion are now maybe exposed enough to get to the root cause. Interestingly it’s because I am currently back in the education system (doing a PhD) that I’ve been able to access support to explore this and today someone finally said “you show lots of autistic traits, shall we see about getting you assessed?”.
Let’s see what comes of it.
Thanks again
Well said. My 2 daughters would not have been discovered as autistic if we had listened to the doctor that we spoke to about getting them
Assessed and our son would not be on the waiting list for and ADHD assessment because she was trying to convince us that did we really want to label them with the stigma of being Autistic... Well after having already researched about form them and realising I myself is probably AuDHD and probably hubby too is Autistic I didn't want them going through school wondering why the don't fit in and not being able to access the support with sensory needs that I didn't have access to growing up! They are glad we got them assessed it's made their world easier to understand and explain and their mental health is much better for it too, they were struggling before they were assessed.
Good for you, your children will thank you for what you're doing I'm sure. We're on the same journey in our family too - autism evaluations for me and one son, ADHD for my wife and our other son. We've had lots of lightbulb moments over the last couple of years and are learning about ourselves and eachother, which is helping us get along better as a family. It's hard isn't it, and yes, the motivation to allow our children to understand themselves earlier than we did to avoid having to muddle along and struggle as much as we did is a string one for me too. I hope it goes well for you.
It was Wakefield’s scare mongering about MMR vaccines turning children autistic. It scared my wife and I when our first was born, in 1999. Would our daughter become autistic because of vaccine damage. A lot of soul searching and deep diving research let us look at relative risks of childhood diseases v vaccines.
Irony is, I was/am, the biggest chance of our children being autistic.
Now strongly suspect that 2 of our 3 children are autistic.Tried to get a diagnosis for one of our daughters, about 5 years ago, but CAMHS said our daughter couldn’t be autistic because autism is a boy thing.
And the “risk” that our children are autistic arises from me being autistic.
I hope your daughter is doing fine despite the blatant incompetence of the clinicians you met five years back. Obviously it's not "a boy thing". I'd like to suggest a youtuber to check out and maybe share with your daughter(s) if you or they are interested/don't already know of her: @imautisticnowwhat
Quinn you really have the know-how. This explanation has been running through my thoughts for too long now.
Thankyou. You're an absolute wizard.
56 and female. Master masker from early, early on. Just this year, I am asking myself all these questions about who the heck I am beyond just an outisder and a survivor.
diagnosed 10 months ago at 50. Yes was like a method actor studying how to be,dress, talk, etc. in order to survive. I miss living in a quirky city where no one batted an eye if you were different, everyone was different! However, as old age nears, there is a certain freedom. Will I make it to this life stage, it has been such a struggle to get this far. Surviving has been an ableist nightmare at times.
Well, here in the United States if you’re an adult who complains about dealing with the world you find yourself in they put you on drugs.
If those drugs don’t work they put you on stronger drugs.
And when I was a kid in the 1970’s a teacher claimed I was retarded. I got tested and shown to be “gifted”.
Thankyou Quinn, You have helped me so much over the past few years to understand myself. Keep up the fantastic work, love your channel.
As a child I was "sensitive". As the oldest of three boys, when my brothers were growing up, I couldn't stand how loud they always were and resented them for their constant loud vocalizing to the point that I just had to go away because they wouldn't ever stop or tone it down and it would drive me crazy. They have a much better relationship with each other now than I do with them, I think due to how uncomfortable I got trying to spend time with them as we were growing up, despite my age being closer to the middle brother than his is to the youngest. My mother kept me out of first year kindergarten because I "wasn't ready" for it. If that wasn't a sign I don't know what is. It definitely didn't help and just made the feeling of being different from everybody else even worse. I scored highly on standard testing, was considered "gifted" but wouldn't do homework. So many clues...
Thank you very much for all your good work. Even though I educate people who seem willing to learn, it's only ever been selfishly. I had never even thought I might be making other autists lives easier. I hope it works like that, hard to judge my own level of communication.
Thanks again Quinn.
I suppose for the algorithm's sake, I just want to acknowledge the consistenly impeccable spelling, grammar, and rhetorical construction of nearly every comment on videos from this and many other other autism channels. ... Does that make me weird?
My parents response when my teachers and school counselors told them to have me checked for Asperger's was denial. "No she's not, she's fine."
That was 30years ago. My mom still won't let me talk about it to/ near/ around her. "STOP TALKING LIKE THAT! YOU'RE FINE!!!!"
My dad is almost as bad, but without what I can only assume is a mother's misplaced guilt over the ignorance of thinking she "did this to" me, or failed somehow. Only in failing to listen to/believe me that something was wrong, or the experts when they tried to tell her I needed a professional eval. I'm coping/trying to give her the benefit of the doubt, its the only defense I can think of. I'm recently self-diagnosed ASD1, and a significant part of the anger I carry about my dismissal and late-diagnosis is at her. If she would just talk to me about it now maybe some of the anger would lose its edge.
Be well, folks...
❤
My goodness me, I'm having an evening going through these comments and seeing parts of my own experience over and over again.
I think anger towards family members who minimise, dismiss, refuse to discuss, deny and cover up is perfectly justified. As I said further up the page, I found out that, when I broached the subject of autism with my mother (I(m 47 and wanted her to fill out a parents' questionnaire as part of my preparation for my evaluation) she told me that she (for the first time even I might add, usually it was the opposite) thought that no, I was perfectly "normal"; although she also admitted that about 25 years ago my sister (who was studying psychology at 6th form at the tme) had told her that she thought I was clearly autistic. neither of them said anything to me of course. I found out about autism initially because of the youtube algorithm throwing some autistic creators' videos at me while I was trying to work out what on earth was going wrong in my life. A lot of research water has flowed under the bridge since then and I'm convinced I'm autistic and trying to stop myself fom exploding from frustration waiting in line for an official evaluation. I absolutely get what your're talking about and understand what it feels like to have family like that.
@@matthewbucktrout3291 most of these words could have been mine. Pretty much everything but the sister factor.
I was diving in to the UA-cams looking for coping strategies on "unrelated" things as well, 2019 into 2020, and everything kept sending me to autism-related sites. My "are you effing kidding me?!" moment was about 3 months in to my rabbit-hole on the topic, when I knew for sure this was it. I decided to spend the next year "living as an autistic person", basically trying to prove that that *wasn't* it.
Aside from the one year my parents let me take Ritalin for ADHD, that was the easiest year of my life. It's ASD1, ABSOLUTELY 100%, and as much as I'd love a formal diagnosis for validation and work/support purposes, I would trade ALL of my family members in order to keep my self-diagnosis, it has made that much of a positive impactful difference in my life. At 45years old, the future looks less bleak than it ever has with this diagnosis in hand.
@@user-ye1go6hw9r Yay, go us!
UA-cam is fantastic, really. I knew nothing at all about autism, I wouldn't have thought of looking it up. I was stuck on personality disorders, bipolar, schizophrenia, CPTSD and narcissism related issues, Childhood Emotional Neglect. All of them had some traits which seemed to ring a bell a bit. but then youtube hurled autism at me enough times that I actualy started to look at the videos. And then, oooh, blimey. Every damned video seemed to be about me. With the other conditions I O.D.-ed on trying to learn about them and it became more and more clear that they weren't describing me afterall. But autism, the opposite. the more I watched, the more I kept saying, well that's me, and that's me and heck that's me too. Some of the videos brought me to tears because I felt that these people had seen me and knew me like no-one else had ever seemed to in the past. And I hadn't even met them! I've never had an experience like that before.
In the past, to get by in social situations required lots of alcohol. I had "friends" and we "went out together" and got drunk. But in hind sight, what was all that about? Putting aside the fact that I have always had trouble following conversations in noisy environments - which I've recently learned is an autism thing (difficulties with auditory discrimination when there's lots of background noise); all you can do when you're drunk is talk crap and do stupid things which you can't even remember half of the following day anyway. That's not (I now understand) what real friendship is. Real friends are people who want to spend time with me (and vice versa) when we're sober and actually share common values and perhaps common interests. Trouble is, I don't have many of those and never really have had. In fact I have one, my wife of over 20 years.
I'm hoping that me learning who I am and why will help me become who I really am, throw off the crap bits of the past, re-prioritise what's important anf meaningful going forwards and perhaps find some other real friends. Or if not, then at least find some meaning and point to my own life so it can be something to look forward to and participate in fully, rather than, like you say, be a bleak-looking, uninviting future which I sometimes feel isn't worth the effort.
Thank you for your reply by the way. I'm actually enjoying myself this evening. Allowing myself to type what I'm thinking and feeling and hearing back from real people with whom I clearly have some things in common. Thank you Quinn for the platform too! Have a nice day!
I'm 44. I got my diagnosis at age 40!
I'm thinking back to childhood in the late 80s and early 90s and I believe I was taken in for an autism diagnostic assessment at age 8 or so. I have memories that line up with what I know about how testing was done back then. But of course, as a girl, and already quite skilled in masking, I did not get detected at that time. As I grew up, all we thought we "knew" about autism didn't match anything I knew about myself. And the fact that my mother wondered if I was autistic at all, was hidden from me until I snooped in the childhood medical records my mother keeps! I've asked her to turn over all my childhood medical and mental health documents. It's really important for me to know these things about my childhood now to see myself in perspective.
Other fun milestones before my own diagnosis - As a young adult in the 2000s all the men I dated had an Asperger's diagnosis! I was obviously drawn to other autistic people. I got an Asperger diagnosis for myself at the age of 30, after some urging from a boyfriend at the time. But it didn't really focus on the fact I do have autistic support needs. I'm so glad I fell down the rabbit hole recently and got a new assessment to get Asperger's off my chart and ASD Level 1 on there. I have people in my life who understand and support my needs and differences and it is so major and healing.
Placed in special-ed during kindergarten and have all the DSM traits but not diagnosed afaik. This was in the 80s. I was able to speak and interact with others so I wasn't autistic enough to be noticed.
Age is almost definitely the major factor as to why my dad (who is rapidly approaching his 60s) wasn't diagnosed in his childhood. As for why it took until two years ago to finally get a diagnosis, it's because his father didnt like him and his mother was an alcoholic, so he had to rapidly develop mechanisms to survive in general society that masked his innate self.
When my brother broke the news to me, my response was "yeah, that makes sense". It's honestly amazing that none of us put the pieces together. His insistence on precise communication, his borderline obsessive interests, his hypersensitivity to smells and sounds. His general rigidity. But I suppose to us that was normal. That's just dad.
Spent the whole time on the verge of tears. The biggest lesson everyone else, (non autistic), needs to learn, to download into their conscious thoughts, is this 'unknown condition' informed and influenced every single aspect of our lives, day in and day out, and all we knew, was something wasn't right, our lives, or our selves, our families. Always this on going stressor of feeling and being alien to our own existence. I was born in 1964. By the time I was 4 or 5, a doctor offered my parents medication for my hyperactivity. I always wondered how I went under the radar, but as you have pointed out in this video, there was no radar. We were the undisciplined, that needed more disciplining. My parents had a major fear of my growing up 'bratty', now I see it was because I was very needy, for very real reasons 😿
As a kid, there was talk of referring me to a 'child psychologist', but my mum refused (based on her friend's suggestion) because I'd be stuck with a label for life!
When I was 18, I was working on a street market, and the boss told me "You're behaving like an autistic child!" - I still don't know what I was doing to warrant that.
I was 54 when I was finally diagnosed.
Born in 75, diagnosed in early 88, but was not told of my diagnosis. My school years were a dumpster fire. Unfortunately, my mother was counseled not to tell me, lest I be labeled. So basically, nothing changed. My mom passed away when I was 21, without ever telling me. I struggled through life and in my mid 40's, suffered a bad and prolonged bout of autistic burnout. It was at this time that my older sister told me of my diagnosis at 13. I remember all the testing and appointments, but never learned why. It's a good thing that I found out when I did. That burnout was bad and I lost skills and regressed. I still haven't regained much of what I lost.
Blimey. I'm struggling waiting for an evaluation (I'm 47). To think that you had yours decades ago and could have used that information to your advantage, to cope better, make better decisions but for that fact you weren't told about it. Ooooh, I bet that goes around in your head a bit. I know it would in mine. Another nuance in the time machine story plot - go back in time and learn about your diagnosis at the time and life might have been different. But then the story never turns out how we might have wished for anyway, the world around us would have been just the same. and more to the point, time machines aren't readily available, yet!
Blimey. The amount of time I've spent ruminating about how different the past could have been if I'd known decades ago (and because of that, the ensuing present too) is ridiculous. having been diagnosed decades ago and just not being told just adds an extra layer to the ruminations I guess. I hope you work through all that and come out of the other end feeling better.
I have Cptsd and my behaviours all looked like BPD. My family abused me for decades but told me that I was crazy and sick.
I'm a boomer. After about the 4th grade, I had all kinds of trouble in school. I became a bully magnet. I went from good grades to barely passing. That was in the 1960s. I have trouble making and keeping friends. I've tried very hard to emulate the social behavior of others, but it becomes a chore, especially after engaging in it for a long while. Only recently have I discovered the possibility that I'm on the spectrum, because of folks such as yourself on social media. I don't know if it's worth the effort and expense to get a diagnosis now. I've managed to endure this far, and if I've been masking, I guess I did it well enough.
I am about to turn 50 soon, and I was recently diagnosed autistic. I was very relieved to find out. It explained many of the troubles in my life, and videos like this help me understand how it can work and be very helpful to me, I really feel better knowing I am not alone.
My grandma "didn't believe in that stuff" but even she knew something was off with me and it wasn't wilfull. I was diagnosed with adhd at age 15 and diagnosed as autistic at age 38. I'm 45 now and it's been really helpful for me to give myself more grace and pay attention to my sensory needs.
“Very autistic trait of talking about ourselves” as I learn about Neurodivergence, Autism Spectrum, my own diagnosis of ADD (*now part of the ADHD spectrum), I stumble upon lots of little nuggets of information from the Autistic community that continues to validate my own identifying myself as possibly autistic. It’s interesting that you mention this trait because all through my childhood I was eager to discuss myself and my genetic condition. I would have been just as enthusiastic to talk about dinosaurs and the weather. While I would talk about my medical history, I also was shamed by my own mother for only talking about my medical condition. I wish people would have asked me to talk about dinosaurs or the weather. I guess those topics were considered too masculine back in the 80s. Another thing I got accused of was mimicking other people or copying any of their mannerisms. Now I just feel like if I try any life hacks offered by autistic people, that maybe someone will think I’m just an attention seeking fraud.
I’m not even sure what I am wanting to say, I just needed to get some of my thoughts off my chest.
I’m enjoying your videos.
If I had not been homeschooled basically my whole life I probably would have been diagnosed as autistic as I my struggles would have been noticed more easily by none-family members and not ignored as "Amy-being-her-weird-and quirky-self". I am not sure if this would have made my life better or worse though as homeschooling was a blessing in my life and florished in that learning environment. In my teens I did try out highschool and hated every single thing about that experience. I had never been as stressed out than since. It was a living nightmare experince.
A long time ago, on the late 80's, I was a kid in elementary, and on a diagnosis path (was called "gifted" at the time, had perfect literary memory) it all got sudently derailed by a set of unfortunate events, sudden severe asthma, a divorce and a change to a more backwards part of the country, poverty, domestic violence, being bullied even by teachers, etc. It's a cliché, autists get hard lives. We all pretty much forgot the gifted child phase, (my literary memory was repressed by trauma anyway.)
Good news is, I fixed my life. Autism awareness like what you provide, it keeps me sane. It's not my fault that I failed at everything about social life. I don't need to endlessly worry about, I'll make it through as I can, with the help of my wonderful family who are everything to me.
@@catxtrallways Painfully familiar...
I had a conversation with a neighbour the other day, who told me his daughter was pregnant, about halfway through pregnancy in fact. He then went on to tell me how she and her husband had been going through a difficult time because there had been some sort of blood test done following some sort of echographical cranial measuring which suggested the baby "might" be Autistic and the possbiliy of terminating the pregnancy because that was raised! She then went to a different hospital where she was told that the blood testing was not reliable and that she shoudl have an amniocentesis done to confirm. I'm not sure of the outcome, but the neighbour seemed to suggest that the "scare" was over and the baby was deemed OK afterall.
The neighbour isn't, in my opinion, a very reliable source of information of any sort, and the story was of course at least second hand. But the boiled down version was that Autism had been "suspected" as a possibility and, because of that, the notion of a pregnancy termination had been raised.
I was totally shocked. I really wanted to say to him - don't you realised, I'm Autistic and my son who you've known since he was a baby who's now 15 years old is Autistic. Would you have encouraged your daughter to have her pregnancy terminated if there was a possibility the baby turned out like us?
But, unfortunately I can't say that yet. Because we're both still on the waiting list for a diagnostic assessment. We might think we're Autistic, but we don't have the official stamp.
I so want to be able to present myself as Autistic and be able to speak out for Autism, but I don't feel legitimate to do so. My head wants to explode with frustration. And the imposter syndrome is very hard to deal with sometimes. Yes, perhaps I'm wrong and instead of being Autistic I'm just, well, wrong. A broken horse instead of a perfectly good zebra to paraphrase another Autistic chap.
To your age related criterion, I'm 47, born in 1976. My leaving school report at 16 described me as "introverted". I wasn't a trouble maker, I was "quiet" "reserved" "a loner" and did well academically, so wasn't a problem to need solving as far as the establishment was concerned.
As far as my family were concerned "weird" "not normal" and more recently "a useless waste of space" were terms used to describe me.
"Autistic" as an explanation for my life experiences and a guide for how to make a new path sounds right to me and my goodness what a relief it will be to get to my turn in the queue for evaluation and out the other side.
Surely it would be resources well invested to decrease waiting lists for Autism evaluations wouldn't it? Consider the savings in mental health - depression, anxienty, suicide, sick leave from work for unexplained burn-out. Surely if more Autistic people knew they/we were Autistic and could make related changes in their/our lives, they/we could become more able to contribute meaningfully to society, in ways which work for us, and society would be a better place?
I'm stuck in a limbo rut. I need to know who I am so I can work out what to do about it. And I know I've got at least another YEAR to wait before it's my turn to bear all for the evaluation.
Anyway, thank you again for your work Quinn, have a nice day
I read your post with great interest, and I think you have already done all the online tests and seen all the corresponding videos. And done all the research. I know about imposter syndrome too. And I have a son who is clearly autistic, and my father showed clear traits. Don't worry, you are part of the family!
@@Rabenov-wq8qy2qg5t Oh yes, I've done all the tests alright, and handed them in with dozens of pages of annotations to the evaluation centre. And read a growing pile of books and watched many, many hours of youtube videos produced by many autistic folk, and spent a long time soul searching and ruminating. now just need the say-so of a group of doctors I've never met who will ask me a bunch of questions and make me do a bunch of tests over half a day and hey presto, I'm either Autistic or not. Then I will get to go home and ruminate some more on the outcome and build an appropriate life for the there-after.
Perhaps a good career change would be to go into time machine manufacture. That way people could go forwards in time to the Autism evaluation date, get the diagnosis done, then go back in time 40-odd years to do their childhoods and make their life choices all over again armed with the knowledge of who they are/were.
But then, it'snot just Autistic people who sometimes have such thoughts I guess. Hey, even better, perhaps that means there's an even bigger market for time machines 🙂
When I look back on all my employment failures and marital failures, and consider how much better my jobs and marriages would have gone if I and my employers (or at least my immediate supervisors) and wives had known about and understood either my ASD or my ADHD (or perhaps they would have needed to know both); and then think of the fact that I’m now 72 years old and will never work nor date again; it’s really hard for me not to consider my own entire life useless.
@@tomhchappell It's really hard not to do that isn't it - to ruminate on how things light have been different, better or happier. I will admit I quite often look at my own life and in that way too. So many wrong turnings, so many missed opportunities or unfulfilled potential because of choosing one direction over another because of not understanding who I am.
I know I need to work on focusing on the things which actually mean something to me, I need to find meaning in my existence. A reason to be joyful (I realised recently that joy is not something I had experienced for a very long time and hadn't really realised). Everyone only has the time left that they have left and we don't know how long that will be. I need to train myself to stop ruminating on the past and what could have been and find a point to the rest of my life and make some changes so it doesn't seem like a waste of time. Perhaps one of the keys is to allow ourselves to do the things we're passionnate about, to work at them and get better and better at them and find joy in that. I struggle with allowing myself to spend time doing what I love (music) because there are too many voices in my head telling me I SHOULD be doing something more "useful" or "worthwhile". It pisses me off to understand that those voixces are from my family of origin, the same people who called me weird, wished I could be "more normal" and latterly declared me to be a "useless waste of space". It's hard work re-parenting oneself and trying to over-write oft-repeated bullshit like that with truths like "you're actually alright how you are" and "you're allowed to do things you like doing and not ALWAYS put everyone else first".
All this stuff is really, really hard. The only positive thing we can do is to focus on the future. But, just typing that makes me think that no, it's not that simple either. I often get bogged down in my future world. Dreaming about what I'm going to do next, or later, or next year, or in the distant future. That can be a trap too. That just leaves the present. What can we do right now to make things better?
This is the first evening I've spent writing comments under a video. I"'ve been wondering for ages what it actually means to "join an online community" of autistic people. This evening is the first taste of how it might work. i've actually had meaningful (in my mind at least) exchanges with other people about issues which matter to me and them. Honestly, that doesn't happen very often for me. perhaps I'm making a breakthrough for myself by sticking my neck out and putting finger tips to keyboard and typing my mind?
We all have different crap in the past, the only thing that's the same for all of us is that it's in the past. It's just hard to leave it there, but that's perhaps part of our work for the present and the future. To re-organise the mental filing cabinets and label the past-events-cabinet just that - the past, to learn from perhaps, but over, gone.
Thank you for your thoughts, I hope we can help eachother to get into the mental reorganisation and reconfiguring to make the rest of our lives better than the past. I really believe that understanding autism, for me personally, is helping and will help, with that task. But heck yes, it would have been good to have known about it earlier. No, stop. Present and future, not past 🙂
Diagnosed ASD/ADHD 2 weeks before my 45th.
I have a niece who lives with me and who was diagnosed with autism last year, at the age of four. I've since observed behaviors and stims that she engages in which I also did when I was her age, to a degree. I've also heard my parents tell tale of how similar her behavior was to mine. The difference being that I was raised in the 80s and this wasn't a commonly-known topic, so it was never considered, while this knowledge is much more commonplace and thus it was given a chance to be looked at for her. Growing up, I was looked at as the quiet, shy one at the back of the class. My parents were never critical about my mannerisms, and I don't believe that they did anything wrong, so there's no blame or guilt-shaming there.
But it's been brought to my attention more and more recently in the past few months that there might be a connection there, as I observe the kiddo's behaviors and interactions. I, just tonight, took the MQ test and scored 30 points above the average. I'm now very interested at getting this officially diagnosed. Maybe it's something that can help me better appreciate and understand what she is going through, so that I can in turn help her develop in greater strides than I did, socially.
Because I’m female and born in 1965. “Oh, she’s just a bit shy.” Says everyone. “She’s just highly strung, here’s a prescription for Librium/librax.” Said my doctor when I was 11.
Why wasn't my autism picked up earlier?
I'm a clever white girl with two degrees and a driving licence.
Diagnosed in 2016 at age 45.
My parents weren't wealthy or well educated, probably also neurodivergent, and still don't understand.
Also, neurodivergence generally was thought to be rare, even dangerous.
But it's not. It accouts for, I believe, 20-25% of people, when all neuro-differences plus left/mixed handedness are added in.
I was born in Angola in 1972. Came to Brazil in 1976. The ignorance from my parents and teachers And the lack of psychiatric awareness made me an undiagnosed adult until this year when I discovered my autism.
My family just considered me as excessively and at times quite abnormally shy and nervous, very emotional and a bit odd, and having a bad temper, but they thought i was borderline genius after i started school because i maintained pretty much perfect grades all through school. But the actual truth was that i am only average to slightly above average intelligence, but 90% of my school was unusually behind or disabled in learning because the education was very substandard. They taught the same remedial stuff every year because so many of them just remained illiterate. There were only maybe 5 kids in my class that could perform at grade level, and we were the only ones that even achieved full literacy as far as i know.