Plus, when you're seen as smart, people write off everything you do as just being a weird smart person who should stop complaining about your struggles.
For 29 years I thought I was just an eccentric who noticed other people were often irrational and unpredictable. "Wait. That's autism? But I can talk just fine". There's nowhere near enough information given to people growing up when they need it. Or, there wasn't in the 90s and 2000s.
The fact that you said you can pay attention better without eye contact... I totally get that. My friend stopped talking about their trip because I wasn't making eye contact... I had to tell them that me not making eye contact is actually a huge compliment, it means I am super comfortable and no longer masking
I have hearing loss. Genuinely. But I admit that sometimes I overdo the turning my good ear (rather than my eyes!) toward the speaker, because they know I don't hear so well, so I get a pass. What they don't know is that I'm not looking them in the eye because I actually DO want to hear, really hear, them, and not be distracted by eye contact. Plus, I complement the effect by giving them repeated if not sustained eye contact while I'm talking. Then they talk and I go back to "talk to the good ear, please." It works really well.
If I'm looking in your eyes while you're talking I'm definitely spacing out. If I'm staring off into space I'm super focused on what you're saying, like you would while listening to an audiobook or podcast. Who's eyes do you stare into when listening to a podcast? Do you not think you're able to pay attention to your podcast just because there's no eyes to stare into? NT assumptions are inconsistent.
That applies to many UA-cam videos about autism. I even follow a channel that is about a special interest (that is not actively advertised as such) and has a significantly ND followerbase that is wonderfully supporting.
An angle that you didn't mention is that I believe Autism and ADHD both have an inherited component. So I grew up in a neurodivergent household, that was my 'normal' and I didn't know or understand how different I was until later in life. At school the bullying was a tell; that and being a quiet studious type meant I got praise for my independence and maturity. No one noticed or at least commented on my anxiety or my lack of social skills. Later I went on to male dominated and fairly high ND careers in engineering and computer science, so again kind of stayed in the community. I remember Dad encouraging us to 'people watch'; that is totally code for 'how to learn to mask'!
A week before I went off to college, my mom (who was probably autistic) said that I was the only person from my high school going to that college, so nobody there would know me or have any history with me. She said I could be whoever I wanted to be. I interpreted that as encouragement to create a brand new personality for my masking. I decided that I was going to be outgoing and social -- quite a change from what I had been before. It turns out that successful masking depends on what you have observed, and what you are capable of perceiving. I have come to realize that there are certain social/emotional signals and non-verbal communication that are outside my ability to perceive. Plus, I only saw outgoing and social people in certain situations. So that meant that my attempt at mimicking failed pretty badly. It was also orders of magnitude more draining. So I reverted to a mask that was much closer to the real me.
With autistic parents you may also sometimes have very good conditions at home for an autistic child, spa that at least at home things are well and understood. It's unfortunately not the reality for all, but at least a bunch of autistic kids do not struggle too much visibly as kids for just that reason.
I so resonate with your comment. Just this year, after doing major trauma work (age 54), have I realized that I am autistic, and so is virtually all of my grandfather's descendants. With so many other people in my family having meltdowns all the time, I was on constant overwhelm and went no contact for decades. Now that I have a name for why I am the way I am, I am finding more compassion for them while also refusing to engage with what I now know to be their lack of self-understanding.
Same ND household so I never had to mask and was an eccentric child to others then I had to interact with others and started masking without knowing it.
In Norway probably 95 % of the autistic people are undiagnosed/ unnoticed. We are faaar behind the US, Australia, UK Here most people, authorities and health personnel still use the term Asperger and think that autistic people are non verbal and hardly able to work. In reality there are thousands of autistic people all over. And most of them have no clue why they’re struggling. I realized I’m autistic last year, age 63, after watching videos like this. I really wish I knew 45 years ago.
So I'm in Germany. My teen, 17, is really struggling in school and life in general after having no problems until two years ago. Husband and little sister have ADHD. We went to a child psychologist to see if she might have the inattentive type of ADHD, and to be honest I think she might also be autistic. And this child psychologist, working at a big university hospital, told me that " if the teachers haven't noticed so far, she hasn't got it". She thought it's depression. Even though the symptoms don't actually match to that properly. Or at least I think it might be caused by ADHD/autism. That's how it works in Germany. It's ridiculous. Way way behind the US.
@@jaosandv I don’t care about an official diagnosis. I actually think I know more about late diagnosed autistic people than most healthcare personnel. I tried to get an appointment at a hospital last year, but was denied because “I don’t struggle enough” Sure, I’m just not able to work any more, I’m in a constant burnout. And there are so few resources, so they better use them on younger people.
I don't think Australia is really all that better, its a big country and basically only those in cities get any sort of anything. there is nothing for 1600km around me.
I am just realizing that I am autistic. It has answered so many of my questions about being the way I am. I learned how to mask and tried to be the person I thought someone else thought I should be. My autistic traits went unnoticed or just labeled as me being a sensitive child. In the 90’s raised by parents that did not know anything about it, they saw it as tantrums and me being spoiled…. Yeah, no.
I also learned I was probably autistic last year and am in the process of getting a diagnosis. I’m also born in the 90’s. I went undiagnosed because a) I am pretty similar to my mom and she had patience with me because of that and b) my mom was scared of the stigma, meds that could change me and me being taken away from her since she was a single mother. She was just scared and left alone. Wishing you the best for understanding yourself and getting the support you need ❤
Congratulations, it's a huge feeling!! I got my diagnosis about a month ago and in the time leading up to it, sooo many dots have connected and the level of self-compassion and understanding that happened almost immediately absolutely changed my life. Like seriously. Keep exploring what feels better and be kind as you learn! It's a big process! ❤
When I was a little girl in the 60s, I was hospitalized for pneumonia and high fever. I was a "painfully shy" little girl, who also twirls her finger in her hair. In my little fevered, terrified state, I twirled my hair so much, that I kind of went bald on one side. The nurse asked my mom if I was the "r" word (a word used frequently back then). Mom had a fit! It wouldn’t be the flash time someone asked my mom that. My mom used to tell the stories over and over to friends and neighbors. I grew up thinking I was a little bit of that "r" word. Learned a lot of masking as an adult.
One of the main reasons I remain undiagnosed to this day is that I hate going to/talking to doctors/therapists so I just avoid it. It's hard to get a diagnosis if you refuse to speak to those that diagnose.
Personally, I think it would be wonderful if we could grant access permissions (for our minds) to trusted professionals. It's the seemingly endless 'stop stop start' that is seriously depressing my diagnosis journey. In the UK, we have to be assessed for ADHD before we can be assessed for ASD. That takes months. A whole lot of waiting and a fair bit of preparation for every stage. It seems like therapy wants to throw every other possibility at us, first, before assessing for autism. It's, probably, extremely damaging. Meanwhile, we become increasingly reluctant and avoidant - particularly if we can force some sort of stability around us. When we're not in the midst of a storm - getting us to stop sailing and try to demonstrate the rocking the boat for half an hour, so that the next therapist can tick some boxes and redirect the case notes, is no small ask.
I had negative experiences in the past, but sometimes it takes persistence, which sucks. I was finally able to find a therapist I really get along with and she was able to connect me to a doctor who was amazing and completed my assessment. I know it's hard, but it can be really helpful, both in the short and long-term. I'm fortunate to live in a major city now, which was not the case growing up (no clue what would have happened if I had an assessment when I was in school?). Regardless, I hope you're able to show yourself love and compassion with whatever is going on in your brainspace and body ❤
@@its.me.mj.anotherone In what ways have you found it to be helpful? I'm genuinely asking. I've never been able to come up with any clear benefit. It sounds like a lot of time and discomfort invested to find out what I already know, and then... what? I don't know.
I was recently diagnosed at 43, very adept masker, and very high IQ… I was abused by a coach at college and was never the same, but always suspected ptsd. I was forced into working at restaurants after the abuse derailed my college plans and I was avoiding the hard science classes where I belonged, because they reminded me of the semester I was abused. I couldn’t ever hold down a job for very long, but I must have worked in 20 restaurants as a waitress and bartender, and I learned to mask like a ninja. No one would ever have guessed, except when I would sometimes miss jokes, but I would play it off as being a dumb blonde. Forcing myself to go to each and every shift was like a nightmare. Sometimes once I got there it would be busy enough that I didn’t have to talk to anyone and there was an amazing peace that I found in the chaos. When I was a high volume bartender for a short time I was finally ok. I would wear earplugs and lose myself in the music, and it was too loud to hold a conversation, and I had a barrier between me and the rest of the club, and I could be “part” of a social situation that I would have never been able to navigate if I was on the other side of the bar. Unfortunately it was short lived, and life has been an immense struggle. Diagnosis has helped me understand that I’m not weak or incapable, just different.
Reasons why I think I went undiagnosed: 1. My ADHD hides the Autism, which hides the ADHD. 2. My siblings and parents are all NT. As the middle of 3, I think I was perfectly positioned to learn what "normal" behavior looked like, according to my age. 3. Media provides an excellent source for an autistic person to learn masking techniques that further hides the autism. 4. This is more personal, but I've always struggled with asking for help, even when I needed it. Thus, in school, I was the quiet kid who was praised for my independence. Nobody looks at a student like me and thinks to ask what's going on inside my head. Obedient, studious, and self-driven, I wasn't a problem. Thus, nobody suspected I was struggling. I was Dx with ADHD at 23, ASD at 32. I met with dozens of mental health professionals between those years (receiving several wrong Dx), and nobody caught it because they weren't asking the right questions because, like you said, non-autistics don't know much, if anything, about ASD.
Wow, it sounds a lot like me. Except I am 60 and have never been truly, properly diagnosed at all (I was labelled "hyperactive" by a GP at 3 yo and sent to preschool early as a treatment for chronic extended meltdowns, and this worked, the meltdowns ended and everyone forgot about me). I was a finicky kid, lots of sensory aversions and also sensory seeking. No one knew what that was. I was the "oddball" or "antisocial". Earlier this year my friend, in her 50's was diagnosed with autism, she is also ADHD. She kept referring to me as autistic. I kept saying "I'm not autistic". I think I am though.
@@BipolarCourage No, that's not the experience of a lot of people who are AuDHD. ADHD covers some ASD symptoms and some people with ASD notice that their ASD becomes more obvious when they are medicated for ADHD.
@@christinechapman9764 I had sensory issues from early on. Aversions to sound, touch, taste, textures, and smells. Yet I sought out certain sensations, particularly touch and sound.
I'm much kinder to myself about that now. It is so freeing to KNOW what is going on and why I get tired. I never knew how hard I had to work...how much energy it took to appear "normal"...until I stopped trying so darned hard.
I was diagnosed in my 50s as a result of my son going through his diagnosis. I can now see that my father was also autistic. My diagnosis gave me the chance to look back on all my “mistakes” and “failures”. Now me and my son, who is 20, really try to use it as a superpower. Thanks for the great videos!
I wrote my book Living With Autism Undiagnosed to help other undiagnosed autistics recognize their autism, and to help the rest of the world understand us better.
I suspect one reason for going undiagnosed is that many of the challenges stem from experiencing more extreme versions of "normal" human experiences. For example messages like "everyone feels anxious sometimes" do not take into account the degree or frequency of anxiety.
Also... women and girls. We are often misdiagnosed as being bipolar or having bpd or having anxiety/depression and that's it. The misconception that autism occurs more often in men and all the symptoms being defined by the male expression has hurt women tremendously and so lately that is becoming more clear and we're seeing more diagnoses of women. In addition, people who are non-binary or have other gender expressions are also being more studied and considered, when in the past the therapist may have only focused on their gender identity and not on their neurotype.
Also anger problems. That is what everyone said was wrong with me, I was prone to anger outbursts and had no ability to control anger. And then anger management techniques did nothing for me so we kept looking. Then my nephew got diagnosed and I was researching how to be there for him and like many others went uh oh this is describing me. Doctor actually thought I was already diagnosed and just not talking to her about it because people hide it.
Well, yes. Basically very few autistic women who were kids in until 1990's had ANY chance of getting diagnosed because the view on autism was based solely on boys. And there are still way too many healthcare professionals (not even talking about others!) who aren't really up-to-date with their views.
Yes, my therapist and I talk about BPD. I do have abandonment issues, and my BPD represents quietly so I basically attack myself until I can't hold it in anymore and BOOM. I always feel awful because my anger comes out around my loved ones. They don't deserve that, not that anyone would. It seems like a stretch that I'd be autistic, have BPD and other comorbities. I don't want to keep collecting diagnoses, but I do want to understand how I tick and how to help myself.
@@awkwardemily15 you sound so like me, with the abandonment, BPD diagnosis, and anger... I think a lot of traits described herein can overlap with non-autistic people too.
@maniSmash . I'm a white male born in 82 and all that happened to me . I was diagnosed (by medical professionals)5 yrs ago. It's a really hard thing to go through for all of us autistics
50+ years undiagnosed due to coping skills developed from highly-introspective analyses of how things seemed to work around me combined with way too many self-preservation skills from childhood trauma. It all adds up to an interesting tool chest of skills for adapting to the world (and people) around me.
I too experienced childhood trauma around 4 y/o which surely kicked in survival mode, a go unnoticed way of being, I honestly have no idea what is me and what was necessary. It’s definitely worth untangling but feels sooo daunting. Onward I go!🙂
This! I'm 43 diagnosed ADHD last year, which makes things more sensible in my life, but I definitely have some autism traits (inability to make eye contact, sensory overload in certain settings, stimming, a deep aversion to small talk or non deep convos), buuut I also have childhood trauma from being raised in an alcoholic verbally abusive home. Untangling all of it is hard, what's ADHD, what's a trauma response what's possible autism. Ultimately I'm working on all of it, because I want the best quality of life I can give myself, but it can be exhausting being non stop dismissed from the autism conversation (notby anyone in this space, just friends and family) because I'm really really good at masking my discomfort.
I prefer to think of it as a shell rather than a mask. That shell is all of our experiences and how we reacted to them. Does that make it a bad thing that needs removing? My shell is my mask. At first sight (to those who know and are looking) it's all trauma response - but it's gone through decades of recombination and Kitsugi and the pieces are speckled with mica. I would like it if people could be content with just looking rather than having to handle. For many people the first thought seems to be, "Will this re-break for me?" as everything to do with society seems to be about jostling egos. Everybody thinks they're in virgin territory and entitled to plant a flag or that it's their destiny to remove the sword from the stone. Our interesting tool chests may each be unique to us. I think, though, more often than not people can swiftly tell there is something very different about us. Usually, any speculation stops where it's delightful or beneficial for them. Beyond number are the times where I've been told that I seem to understand the human condition better than anyone before. To me - it's basic curiosity and interest and it's really depressing that I might be the first person, that somebody has talked to, to have manifested it. It makes me think we live in a world full of extremely disinterested people.
I think a reason you missed is "because you're old". I'm a senior (female) and when I was young in the 60s, there were no 'isms' - just 'weirdos'. At various points in my first three decades, I was referred to professionals, singled out at school for being abnormal, or sought out therapy as an adult, but there was no awareness at all of things commonly diagnosed today (autism, ADHD etc.) so I never received any useful support. I had no idea what was 'wrong' with me until family members started to joke that I was like Sheldon on Big Bang Theory (I am), and that eventually in the long term led to self-diagnosis after I had retired (after periods of mistakenly identifying with labels like 'mild depression', Highly Sensitive, Introvert, short-tempered etc.). It seems so obvious now - I wish I had known during my working years because it would have made such a difference.
I feel you! All there was growing up was "dyslexia" in "my world". My older and younger bros are dyslexic. I am a female middle child, forced to adapt and deal since I have a memory (or before probably). The idea that I needed support, or had a cognitive difference (vs being over sensitive, whiny, friendless, demanding, shy, grumpy) was just not-possible. Now that I have an idea of why, I am between elation, and tears (because the list of things I thought i was, all that negative stuff in brackets/parenthesis is super triggering because I have heard it all my life and felt so horribly responsible for it.) Decades of internalizing shame brought on my a cognitive/neurological difference will undoubtedly take a while to come to terms with. Like you, I wish I had know earlier-or even just been afforded a little grace from the people nearest "and supposedly dearest) to me.I do not yet understand what it means to have a safe place where i can comfortably unmask. I wish you all the best, and hope your next many decades are filled with self-discovery and acceptance from those around you.
For women even middle-aged is enough. The official view on autism was very male-centric still in the 1980's, I think even until the end the millennium. So by default you can assume almost all female autists that were born until 1980s to have been diagnosed either as adults, or not at all.
This is exactly it! We were just "weird." Autism was not well diagnosed when I was growing up in the 60s anyway, especially "higher functioning" ones (before being mean, please help me with more accurate and up-to-date terminology). But girls were never even considered as autistic as it was only something that happened to boys. Oof. Now, in my 60s, telling friends I've known for years that it turns out I'm autistic and they just think I'm attention seeking - another weird behavior. Can't win for losing....
@@margefoyle6796 yes! Told my family and they also think it's just me being 'weird' again, I'm sure they don't believe me. Told a couple of friends who were taken aback at the TMI and just dropped the topic. So I'm not telling anyone now.
@@wannaknit I feel you. I found a good therapist, I think they are neurodiverse too so unlike the previous one, they do not compound my issues. Anyway, with their help, I am learning to accept myself as well as set boundaries. Most people around me are annoyed, irritated, taking it personally. I teach (1st grade-College. Multiple jobs) and believe in meeting people where they are and acknowledging their experience as they express it. Obviously, this is very important in the social-emotional sphere. So few people actually give this to their loved ones. It sounds like your community needs to figure that out. I am very sorry that you do not feel safe and accepted in revealing your true self. I really understand you, as I have masked 24/7 and never found a safe place to be me, until very recently. And that is only because it has gotten to a point where I am ready to get a giant flamethrower (death ray size) and burn my life to a crisp. For now, all I can do is send you encouragement and virtual hugs-side hug if that is what you prefer, or an air hug-I can meet you where you are at with love and respect, which is what we all deserve.
I was diagnosed at 58 when I was unable to mask as I had before. I had known something was wrong but was able to hide it for many years. But as I grew older, I had difficulty coping, my anxiety grew worse and finally I sought treatment. It took awhile but was finally accurately diagnosed.
Same at 51. Masked all thru training and career, exhausted all my inner resources. diagnosed ADHD age 47, now self identified as AuHD I feel so much better hearing other people’s stories!
It’s really helpful to me that you’ve described your experience this way. I’m not diagnosed but have consciously masked to fit in since early childhood. Since having a stroke a few years ago, I find it’s just too much hard work to mask, so I’ve withdrawn from social situations as they’re overwhelming now. Not sure whether it’s worth the struggle to get assessed/diagnosed now, so just live in the way that’s comfortable for me.
71 and only recently diagnosed. Highest tested IQ = 170. ADHD, PTSD, severe anxiety, with a host of physical issues as well. I stopped being able to mask about the time Covid hit. Partly from Covid and long Covid (8 months of that), and partly a series of falls. After 3 years of trying to get help, I may have found someone. Several of the things you mentioned hit home for me. I have never been able to manage time. I’m either deeply immersed in something, or I have no interest at all. I mentally check out if I can’t ask questions when I need to, and by the time I’m allowed to ask, I can’t remember what the question(s) were. I could go on, but I’m already forgetting what I wanted to say.
oh wow, that's a pretty high IQ. Did that help in any way? For me people seemed to cope with my quirks (yeah, metldowns) as they really liked my good analytic skills.
@@assimilateborg No, it did not help. If anything it made me seem weirder to my peers. My analytic skills pissed people off. I angered people in college, medical school, and law school. Even worse, while I enjoyed school, I hated having to practice with real life people, co-workers and patients/clients. Not because I didn’t like them. I simply hated the stress.
I was diagnosed last year at 49. I am extremely high masking with a high IQ, which probably contributed to the late diagnosis, but my money is on lack of education of healthcare professionals. It's really, really bad in New Mexico. I don't mask much anymore, which has made it next to impossible to deal with NT people. I am so tired of trying.
I live in New Mexico too. I was diagnosed last year at age 47. I don't think that at our age we would have been diagnosed anywhere unless we were obviously autistic as children. Asperger's wasn't in the DSM until 1994 in the USA. So we were already adults when that came out and adult diagnosis was rare. Maybe if we were born more recently they would have caught us but not back then.
Self diagnosed at 54. 72 now, also I'm Mensa. I was called strange, weird, lazy, stupid. Made to feel like I was nothing. My father told me I wasn't worth much. My mother felt that she failed, so she blamed me. My sister wants to have guardianship over me, because our mother said, when we where children, that I could not live alone, even though I have for 50 years, now. I am strong. I have had to be. Not sure if an early diagnoses would have helped. Probably have made it worse and easier to have me put away.
My thoughts are with you, stay strong. But also? Look around and see who you trust with your medical decisions if something were to happen to you. If you had a stroke or a brain injury who would you trust to take the reins - and let go as you healed? I had a brain injury which transformed me from a functional person to one unable to hold a job. This does not mean I cannot live alone. It means it would be a lot less stressful if I had help with paperwork, but I can - and do - drive and live alone. If someone is trying to take control of you, then you need a plan in writing, agreed to by your emergency support person or people, that is made into a legal document so you are protected if you become injured and temporarily require in home supports. If you cannot afford an attorney,look up autism support in your area or check with your nearest university law library. Hope this helps!
@user-kt5cp7lv5e I have no one. I recently had two operations, one I was hospitalized for almost three weeks. I am old if I die, well I was going to get around to it one of these days. The doctors and hospital does not have any in case of contact info. Legal documents are a prepaid cremation and a will. My sister gets nothing. Autism support is worthless here. I reach out to them for help changing jobs. They could not help me because everyone who know me as a child was dead. I was the oldest of anyone still alive, and therefore could not be diagnosed. Not their problem. I have no one in this state. Closes is three states away. Paperwork is a stress, but being dyslexic it always was. Now with spell check I do OK. I am calm and happy for the first time in my life. Only wish when I die make it quick.
I turned 60 this year and have no real hope of getting a professional diagnosis however the community here has been invaluable to me in my journey of self help and discovery. Burnout have got me in it’s grip right now and honestly I feel I lost all ability to mask so I’m hiding out at home unless I absolutely have to leave. Thanks to all sharing their experiences to help others. 💖✨
I’m 50 this year and feel the same way the only time I go out is when I have to. I go take care of my parents, I run to the store (in and out as quick As possible) and I walk my border collie pup. Usually for several hours a day… alone and in, typically, quiet places. I have had people ask to walk with me and I usually try to say no. I need that time alone.
I turn 60 in a few months and I could have written this word for word. My last job I worked publicly was in customer service until I had a meltdown of epic proportions. I did managed to hold the meltdown inside until I got home. That was five years ago. I rarely leave the house because I think I'm burnt out from masking for almost six decades.
Add me to this … stay at home, pick up groceries and have things delivered. It’s lonely but also stable, removes the fear of meltdowns… this channel is lifesaving ❤
I just turned 60 as well and was able to mask for many years until menopause symptoms made it impossible to continue. I am still trying to get my health and energy back after a few years. I look for little ways to make each day special. I focus on enjoying my day rather than being productive. I hope you feel better soon. ❤
Discovering autism and masking later in life has been very impactful for me as an alcohol addict. I could never fully communicate my relationship to alcohol because for a long time I was taught that being neurodivergent was even worse than being an alcoholic. I blamed everything on the drink and played like I was perfectly normal and just a little bit of a party animal. I avoided diagnosis for more than 30 years, but I'm really glad that I finally found a therapist that saw my problem.
Getting older (66 now) has made masking more difficult. Yes, even when I didn't know I'd been masking and when I couldn't, therefore, calculate that what was getting harder WAS masking. I just knew that...well, SOMETHING was getting harder. Like for instance keeping it together through hours-long talking-forever getting-nowhere permeated-with-hivemind-signalling-and-jousting committee meetings of one kind or another. Over the past 20 years or so these meetings and the whole insane (IMHO) set of rituals connected with them, the emotional subtexts, the pregnant silences, all the stuff you know everybody's avoiding saying, all the conclusions and decisions you know 100% from Minute One that the meeting will inevitably come to but for some reason The Hive is playing this excruciating, nauseating charade as if we can't and won't know until we finish this ritual--it's both mentally and PHYSICALLY shattering to me, I mean like a dull but sustained cattle prod shock to my gut. Sometimes I just have to do a bathroom break simply to pull the molecules of my brain together out of the air where they've been whirling around me like a pulverized solar system and collect them again into some semblance of a person I once knew called Me. And whisper a quiet prayer, "God help me, God help me, I can't stand this, I just can't stand this...." I was pretty handy at tamping all this down and gliding above it, like a singer with a bit of a cold sometimes just has to "sing over it." I didn't KNOW I was doing that, but I did it instinctively. As I got into my 50s and 60s my capacity to "sing over it" incrementally disintegrated and I would find myself at these meetings barely able to conceal the existential horror at the whole proceeding from my face. One way to conceal it was "eyes closed in deep reflection," ostensibly on some gem just offered by a meeting member. When really, of course, it was a silent prayer, "God help me, God help me...." Now, at my ripe old age of 66, after knowing about my autism for a year, I feel...I'll say it...entitled to simply bow out. To say, "If you want my input, here it is in advance, in writing: 1, 2, 3. But I don't need this meeting and the meeting doesn't need me."
@@barbyoungberg Yes, it is such a sense-making realization, isn't it. Rather than being an inexorable process you have no say in, you discover that it's...well...perhaps still in some sense inexorable, but actually something you have choices and prerogatives and...really...power in. You're not the problem, the authoritarian rigidity of the Hivemind and all its unquestioned rituals is. Carve out your true self's niche. Sure, not arrogantly or obnoxiously--we don't want to be that--but at the same time firmly and non-cravenly. Don't let others "un-be" you.
Recently diagnosed ASD at age 62. My autism went undiagnosed because 1) I’m female and 2)my ADHD hyperactivity and executive functioning problems were much more noticeable and my dyslexia just made me seem low IQ at school because of my extremely slow reading speed and terrible spelling. But my inability to comprehend social rules & make friends along with my general weirdness led to constantly being bullied in school, workplaces and even in church communities! Once I got on ADHD meds at age 41, the autistic traits became more apparent. Even being organized and less impulsive and less hyper, I still had problems with relationships especially with bosses and coworkers so I never kept a job for more than 2 years (or 4 years if very part time). Doing great now with my Air Bnb business!!! No boss, no coworkers but they gave me a mentor to contact when I need help. Perfect!!
I’m glad you found your place, I’ve had similar troubles with dyslexia and thinking im stupid until I took the ASVAB military test and they said I scored so high I can pick any job I want. Haven’t found my place in the world yet after getting discharged. I’m a stay at home dad but would like to make money for the family. I got my tism diagnosis now at 32 and trying to get my military discharge upgraded but it’s hard with no help. May your life be filled with many blessings much love your not alone, we all(autism) go through the same struggles just in different ways.
Diagnosed at 74!!!! I look back and recognize the YEARS of masking and "socially acceptable" stimming Ive utilized. Finger tapping, hair adjustments, lip biting) The lifetime of feeling like a scared freak, unaccepted, crazy, ANXIETY ridden, OCD depressive. When my therapist asked if id consent to testing and then being diagnosed...WOW emancipation...im not effed up, im neurodiverse.❤️
That's awesome! My mom is also 74 and for the last few months I've been talking to her about new findings about autism in women. I recognized the traits (very heavily) in her, but didn't want to be pushy, just offer the information. She said to me recently, matter-of-factly: yes, I'm pretty sure I'm autistic, and I've always known. ❤
I'm turning 40 this year, and I've only started my dive into neurodivergence research about a year ago. I always knew I was different and I couldn't explain my struggles to myself, nor why all the self-help books and methods I looked into weren't actually helping. Learning properly about ASD and ADHD has answered so many lifelong questions and has already led to so much improvement over the past year! So I'd say that for me, the main reason why I flew under the radar for so long would be lack of awareness. If I had a proper awareness of what ADHD and ASD were, I would have identified it in myself much sooner. When I was a child, ADHD and ASD were considered male-only disorders - as an academically gifted, non-dusruptive girl, there was no reason for me to be screened for anything. High IQ and the combination of ADHD/ASD (which compensated for each other in some areas) helped me adapt to a neurotypical world - but even though I could function and be independent, I could never thrive. I was socially unhappy and constantly exhausted/ill. Learning about and understanding my neurodivergence has helped me take care of myself better because I understand my needs now, and I don't feel like I'm a failure. I was just a fridge trying to be a toaster, but now I have the correct manual =)
I’m glad you found it. I just found out at 30 and diagnosed at 32. It’s amazing the relief I felt. Like I don’t suck I’m just special. I’ve been through HELL. Severely spanked as a child for stims and meltdowns. Learned real fast how to mask and it took till now to unmask fully. Sexually confused for life. Terrible relationships, death to self at 19 revived by father and medic. Then straight to the marine corps at 19, wonder how that went. Absolutely terrible. Discharged, rough marriage for 11 years and have a 9 year old son. And now to realize I probably could have avoided all that trauma if only I was diagnosed at 6-7 like I should have been and have coping mechanisms or at least know why I feel this way. I say all this to let you know you are not alone and all of us 80s/90s undiagnosed autism children went through the same pain just in different ways. Be you, unmask and let the world see your true light we all have something special to bring to the world. Much love and compassion.
My number one reason: monotropism. I’m so focused on a few things at the exclusion of basically everything else that autism never penetrated into my bubble. Until it suddenly did. When I was 40.
Prior diagnoses also play a big role in autism being a missed diagnosis. I am diagnosed with OCD, and this was used to rule out an autism diagnosis by a clinic that specializes in autism in Upstate New York. This was after a short questionnaire and about a 10-15 minute interview, where the interviewer said I clearly just have OCD (I remember masking by forcing eye contact, which people can usually do for a short time. I think people mostly unmask only after getting comfortable with people first.) OCD is commonly used to rule out an autism diagnosis, as if autistic people can't also have an anxiety disorder. I think a recent study found that people diagnosed with autism are 37% more likely to be diagnosed with an anxiety disorder in addition, so any test that uses that against a diagnosis needs to be questioned immediately. OCD also runs in both sides of my family, so I'm pretty sure all of my siblings have OCD, and I just turned out to be the autistic one in addition to having OCD. Im not officially diagnosed still, but a family member who became a counselor brought it up again after I couldn't tolerate the heat and changes in plans at our last family vacation, and they now firmly believe I'm on the spectrum, but of course can't officially diagnose me. For years I've been in and out of jobs, experiencing burnout, and having meltdowns where I'll literally punch a wall, throw things, pull my hair, scream, etc. I also hate the heat and will start sweating at the slightest amount of heat and stress. And I detest when people either change plans or want to be "spontaneous" and not have a plan. I also have always tapped things, made noises with my mouth, and stimmed in other ways. People are going without care due to the carelessness and negligence of these institutions and our awful healthcare system in the U.S., and it makes me irate. These places need to change the way they do diagnostic tests. They should be listening to people like you on UA-cam who actually know what is to BE autistic, who have more insight into actual symptoms, rather than relying on antiquated ideas of what autism is for their diagnostic evaluations.
For a long time, doctors didn't believe you could have both ADHD and autism. Thankfully doctors are learning more about autism but still have a long way to go.@@Catlily5
Self-diagnosed here. A major hurdle, at least in the US, is the healthcare system. You said you've been through lots of therapists before you found one that diagnosed you correctly. It's much more difficult to get a diagnosis and support when you're low income and the only access to healthcare you have is a general practitioner every few years that you have to pay out of pocket for.
I was a young middle-class white boy once... So why did my autism go unnoticed? Trains! You see, cars are my special interest, doesn't even quite cut it, they're really integrated into my soul. Because of this I had a weird irrational hatred of trains, or at least toy trains because I felt like they were always being shoved down my throat. Like please, just give me some cars. what is this weird blue idiot train with a face on him?! OMG... So once again trains screwed me over and caused something bad in my life!!! F*** you, trains! Trains and I actually made up when I had to take a train everyday to and from high school lol. But it's funny to think that the stereotype was potentially one of the minor factors that caused me to go unnoticed 😂
As a female who was a child in the 90s. I was constantly in therapy, seen so many different doctors. Got almost every diagnosis under the sun except for the right one. By time I was 10 years old, I'd been diagnosed with bipolar disorder, adhd, and depression. Spent a good portion of my teen years institutionalized. In and out of psych wards, juvie, group homes, and residential treatment facilities. Many of these places were abusive on so many levels. And people seem dumbfounded as to why I have been so hesitant about seeking "help" for my children. I don't want them to go through anything I went through. I have to hope things have changed since 20-30 years ago.
My experience was not as extreme, but I empathize with what you say. I spent 16 years with misdiagnosis and medication before finally getting an answer. My youth was wasted feeling sick and gaslighted and I will never forgive the medical establishment for what they did to me.
@nude_cat_ellie7417 it's a difficult thing to forgive. And sucks even more when you really need help and can never trust another therapist or psychologist ever again.
Similar experience here, I'm so sorry you went through so much pain. You deserved better. I hope you and your kiddos find support that heals and helps you rather than "treatment" that harms you. It's so painful to want to find solutions, be willing to work hard at feeling better, but then the professionals who are supposed to be guiding you through the difficulties are the ones who make everything much much worse.
I found out I was autistic six years ago when my oldest was diagnosed. I taught myself the look between the eyes instead of directly. It gives the illusion of eye contact without the add mental stress. My hubby got me a spinner ring to help with stemming and overwhelming situations. I made my autistic son a Viking style cuff to help him with his stemming at jr high.
Trying to find a professional that even looks at autism in adults in my area is impossible. I still haven't found any. Don't they realize that children grow up? I am in the South though, so maybe that's part of the reason? Ones I've found online either don't do virtual sessions in my state, or are ridiculously expensive since they don't take insurance. 😢
I can tell you exactly how I went undiagnosed because I had the skills of mimicry masking on an extremely efficient scale, probably the highest degree of masking almost to the point that it corroded my core self being able to blend in like a chameleon and camouflage is exhausting and doing it your whole life you eventually damage yourself don’t do it just be authentic. Don’t do what I did, I learn to lie to avoid to avoid detection of my stranger abnormal behaviors because I was afraid of being ostracized because I don’t feel like people will accept me. Are you stuck in perpetual circle?
I'm undiagnosed because: 1) female (cis) 2) POC (black) 3) grew up poor 4) very smart 5) emotionally intelligent 6) I'm a laugh riot to many It's funny, I dd know exactly ONE diagnosed autist growing up. He was my mom's friend's nephew & he's at least a decade younger than I. He was completely nonverbal for "too long" & was high support needs. No idea how he's doing now.
Same six reasons. Plus, I hit the markers "on time" as a baby/kid. But once I went to school, the bullying commenced. I thought back and it could've been because I was staring at people among other things. I have to prepare to interact with other people, like what am I going to say and not say so that I don't get in trouble. But alas, i have offended someone. My social relationships are trash. What do these people expect from me. Small talk is torture because what do i say. But that's normal so maybe I'm an imposter. I'm still not diagnosed because they quoted me a cost of $5400 and insurance doesn't cover it and because it could just be me exaggerating because depression, anxiety, misphonia, and PTSD make more sense.
I think it is important to say how autism *CAN* look. Because for some people, it does manifest more aggressively. My son is an example, my other son is probably undiagnosed autistic. Both struggle uniquely. Yes, people have seen extreme depictions, but it does exist and manifest in wildly different ways and degrees. 🙂
I went undiagnosed for 50 years because - I didn't know about autism, my family didn't know about autism, healthcare professionals may have known - but by the time I was seeking help I was disinclined to engage with them and there seemed to be simple pill-based treatments for mental health symptoms like depression and anxiety which made their ineffectiveness easy to ignore. Finally, to get diagnosed cost me thousands of pounds and, at 50+ and with no prospect of receiving any kind of support there seemed to be no strong reason to pay that money.
Female autism was not a thing when I was growing up and has only really been given weight since about 2020. So many adults are trying to get diagnosed that 1, doctors disbelieve and think you are faking for attention (seriously? Who does that?) 2, there aren't enough autism specialists (in UK) and 3, the lengthy diagnostic time.
I definitely think I was diagnosed late because of a lack of awareness, paired with that I'm not the stereotypical white young boy who loves trains or something like that. I was professionally diagnosed at the age of 21, and wholly because of my own initiative after learning about autism by pure chance. Getting a diagnosis was nerve wrecking as I deal with a fair bit of imposter syndrome. I would say I am high masking, but even so. I flap my hands when I'm excited and have sensitive hearing among other things, if my parents had known anything about autism when I was growing up, I think I would've gotten a diagnosis much earlier in life. Growing up, I just internalized all the blame, impatience and irritation from those around me, thinking I was just a broken person where others seemed just fine. My diagnosis was a relief for me, it was an answer for why I was struggling. But sadly there's very little if anything for support for late diagnosed autistics. After diagnosis, I was simply sent on my way, no clue as to what to do next. I think there should be way more awareness in schools especially, in an effort to find struggling kids early before they learn to mask by necessity. Masking is really tough to unlearn and can be quite damaging over years of holding yourself back from standing out. I've racked up a lot of trauma over the years due to bullying, no support and/or understanding and unhealthy reinforcement of my own masking behavior. I finally found a good psychologist, but that was an entirely different struggle on its own.
You mention you would absorb more of what the person says if you not looking at them. You still look at them else it looks rude. I have ADHD. If someone is giving a speech or presentation, I would absorb overwhelmingly more if I am fidgeting with something or doing a type of puzzle. I would still avoid those activities for the same reason. Though I am absorbing more, it looks rude.
couple of weeks ago my son (20) came back from the drs with adhd tests to do and surprisingly, autism ones too. We both did the tests and I scored really high in all of them. So now I am working through what that might mean for me and what to do about it. I’m scared that a dr will just invalidate my concerns.
The not looking people in the eye thing, yeah I do that! But since I live in Florida I also wear really dark sunglasses, with side panels. Nobody knows I'm not looking. I figured that out when I was a kid and my folks would take us surfing, I wasn't as tired as the rest of the family when we got home, because I had NOT been masking all day like usual.
Oooh this is a great idea! I also like wearing sunglasses - especially ones that are reflective so no one can see my eyes - but didn’t think about how it also helps me to not be forced to make eye contact. Mostly was glad that I could look at other people or things around me for as long as I wanted without any judgments 🤣
I was originally diagnosed with ADHD at 8 years old...as I got older, it was clear there was some other psychological stuff going on...I've been diagnosed and medicated for so many disorders...OCD, Pure O OCD, Depression, Bipolar I, Bipolar II, anxiety,...the list goes on. Every time people have tried to medicate me, things usually end up much much worse. I fell down a rabbit hole about Autism about a year ago when I read that some of us have "people" as a special interest, and that resonated with me in a deep way so I started researching. I'm convinced I'm on the spectrum as are my two daughters. Unfortunately, it's challenging to find people who can do an assessment and make a diagnosis for less than 3k and a 2 year wait :( :( :( *Edited to add: I do definitely have ADHD...but I never understood why I am always in conflict about having a routine and needing to break out of one. I thrive in routine, and I can thrive in change if I am initiating the change, but if I don't initiate change, whew, look out. I like your videos. Your content resonates with me in a way that other folks content about ASD has not. I think it was your disclosure of you "buddies" that got me. I have a large, stuffed Tiger that I got when I was 11 (I'm 36 now), he was my imaginary friend back then and still is. I can have full conversations with him in my head....but this makes me feel silly, so I gave the tiger to my puppy (his name is Chase (the tiger, not the puppy). So I started thinking about what other "buddies" I have, and I realized I've been naming cars and motorcycles since I was very young. They all have personalities , too.
Diagnosed at 68 years old. I also have multi-sensory aphantasia, severely deficient autobiographical memory (SDAM), CPTSD and a long list of other neurological 'wonky wiring' How was I not diagnosed earlier? As a child, autism wasn't 'a thing' If I didn't look my mother in the eye, I was belted. If I stimmed (as I now know what I was doing) I was belted. So I learned to disappear, to be still and to always look people in the eye regardless of how uncomfortable I was. I learned to swallow my pain and discomfort. I am a world master at masking. Learning - and accepting - that I am autistic has been such a relief. So many things in my life started to become clear as I learned to understand myself. I made a decision to not hide this diagnosis, to be up-front about my differences. They are part of who I am.
I was pretty good at masking until perimenopause and uninjury that disabled me physically. Then all my regulation both physically and mentally was taken away. And lo... the neurodoversity became apparent to the world.
One thing that goes along with the lack of awareness/understanding of autism is the fact that if we're getting by, there's no one really pushing for a diagnosis or more exploration. Even after I had taken a self-test that showed me "mildly" on spectrum (I don't have diagnoses but as I dig deeper I suspect I have an ADHD component as well which I feel kept me from testing as high as I might without it), I largely found that mildly interesting. I didn't really start exploring until my son was diagnosed with autism related to a speech delay and it was no mystery which side of the family that came from. Of course once I started exploring the autistic experience, more and more parallels became obvious.
I was diagnosed at 37 after self referral to autism research centre Southampton in England. I a, female and had five kids. I masked for years successfully until I lost a daughter at 2 years old in a drowning accident and they didn’t understand what they thought was an inability to react. In uk, it’s not great. All my kids are autistic but only three have a diagnosis out of the five remaining. You learn to mask in the eighties where it was that or be beaten up? I never quite realised that my constant falling asleep at bus stops on way home from school and college was because I was so tired from masking . Also rainman has a lot to answer for.
I was about to ask "how important is it really, to get diagnosed if you're a decently-functioning adult" but everything you're saying here fits me to a T. On facebook I came across a couple of elementary school classmates I had (back in the 70s). They posted some pictures of birthday parties. I wasn't in any of them. I don't remember even knowing those parties were taking place. This was the first time I really wondered if I was autistic even though I know I was extremely shy into adulthood and had problems with depression and anxiety and social interaction. Seeing my old classmates smiling in those party pictures and realizing I wasn't a part of any of that hit me a little hard. We were just little kids.
Self diagnosed with A LOT of online tests aged 46. Why I went undiagnosed, exactly your #1 reason: awareness. Autism = Rain Man (that was about all I knew about autism) and I was never like that. Same thing with ADHD. I've had a couple class mates that were so obviously ADHD'ers, very hyper to say the least.... but a lot of people with ADHD are not hyper at all, at least not from the outside. Again, I could never have that. But when I take a test to see if I have it, there you go. I always felt different from everybody else around me and I was always told "everyone's unique", basically dismissing me completely. Instead of searching what was wrong, instead I was encouraged to just learn to deal with life and all the hurdles it throws at us ND people.
I was growing up in the 70's and 80's, there just really wasn't much awareness. Looking back it's pretty freaking obvious, but there just wasn't the langauge at the time.
Idk if I commented on another video about this but… I diagnosed myself with adhd at 19 years old. Was officially diagnosed at 20. A year goes by and I thought I had my adhd control, I had a miracle healing from God who healed me from anxiety but… there was still something there that I really haven’t figured out. Like there was something missing. Then at one doctor appointment I was saying something to my dr and he then said “that seems pretty autistic… you might have it but we don’t have to diagnose you cause it’s so mild.” (Paraphrasing what I got out) When I heard this It shocked me. Even if he said maybe, it’s pretty clear now to why I do things the way I do. I get home and do my research (hence going to ur channel) and the more I indulged myself of the topic, the more I am open to it. I heard self diagnosis is valid which is nice because I don’t think my doctor would let me in his opinion. Like he would but he wouldn’t recommend it. He said when we have the best exercise, eating , and sleeping that that’s all that matters, Is you taking care of yourself. So yah that’s my story… Oh also my mom doesn’t believe me which makes me sad.
I am 42. I recently realized I am autistic and have ADHD. I have to mask at home and in public. It is fucking exhausting. You would think being exhausted literally all the fucking time would make it easier to sleep, think again. The anxiety and stomach issues is crippling at times.
This is so true. I’m constantly exhausted from the world and also the pull of being autistic and having ADHD (the internal battles that happen are so real and so exhausting) - but then i still can’t get good sleep. I completely get this - it’s so draining and frustrating too. And don’t get me started on the stomach issues 😆 just watch a few videos and it comes up often because it’s ALWAYS there 😬
Another reason, similar to your last one, is Autism not being recognize by other Autistic people, like our parents, who may also be Autistic or have siblings and/or parents who are Autistic, so they just see it as normal.
Yes, so true! Thanks for sharing that. Also recently heard that it might be more common for people who might not be autistic but grew up with autistic family to have a large number of friends who are autistic/neurodivergent because they also see it as normal and familiar without even realizing it. Really interesting all the new info coming out all the time 😊
I was raised religious, I believed that masking was just me choosing to be a good person. I thought god hated me. My parents were undiagnosed and were so hard on themselves and me. Everything I said I was going through they said was “normal” but of course they would say that because they were undiagnosed autistic! I was told I was too sensitive, too stubborn, too fidgety, etc. I was one of those 90’s gifted kids and I often thought my differences were because I was just smart. We also moved a lot so I was always the new kid and my differences were usually explained away by me not being from “around here”. I’m almost 40 now and self diagnosed about 6 months ago. I’m so grateful for videos like this that have helped me find the language I never knew I needed to express my world and how I perceive it.
I was recently diagnosed as autistic…Im 67…also dyslexic…let’s just say it’s been special. The journey has been lonely and brutal and I have had to find my own way in this world. After street fights, alcohol, drugs I have come to a peaceful place of understanding. The world will never know or understand me but the universe has always loved me and held me dear. Im also the Chief engineer at a rather large aerospace and engineering company and Im flourishing in ways in never knew. I built a bridge back to the world that had forsaken me. I’ll build the rockets and pay there taxes but under no circumstances will I ever put up with there bullshit. In peace and love..Malcolm
@malcolm I loved what you said there- ‘The world will never know or understand me but the universe has always loved me and held me dear’ - that is a truth which brings me peace, too. You’ve done well in your career. I had the potential but didn’t find a niche where I could excel, so have always settled for less, the ‘comfortable option’ as far as my social skills are concerned. I still feel I’ve done remarkably well considering. Now I’m older, I feel more comfortable and secure about honouring what others may perceive as my ‘quirks’, instead of giving myself a hard time, trying to mask and be like them. I’m similar age to you and undiagnosed, still working but entirely from home now for the good of my mental health. I have a very small social circle of people who ‘get’ me, plus my grownup children, and life feels mostly very good. Best wishes to you.
As a late-diagnosed AuDHD (High-Functioning Autism and ADHD) woman with many chronic invisible medical conditions (one genetic, others are fallout from the undiagnosed ASD stress factors), I totally empathise with everything you say here. I was diagnosed as 'hyperactive' (the old money word for ADHD) when I was young with a High IQ long before my formal diagnosis of Aspergers/High Functioning Autism at the age of 49 years. Autism was not even mentioned until much later. In the meantime, it did not help that my family members were physically and/or mentally ill, which caused lots of upset, abuse, bullying, etc., where there were few people to confide in. I didn't realise I was masking until I was teased and made fun of. The figurative elastic on that mask would wear out. Then, when my love for Japanese Kabuki Theatre was kindled, a swap occurred between the figurative mask and elastic going off and the kumadori makeup that Kabuki actors apply for each character and play that won't fall off under figurative hot lights. This continued right up to fighting for a diagnosis of Autism, but the figurative kumadori continues. Yes, paying bills is a pain for the same reasons you state, and how you handle them is how I handle them, too. It helps lessen the stress, anxiety, meltdowns, needless drama, and shutdowns they and every situation in the NT world give me. Autism can be a crown of thorns or a crown of lilies for many varied reasons and situations.
You are completely correct. I internalized completely as much as possible. I had two big explosive meltdowns when I was forced to be in scenarios where I couldn't control the amount of people I had to deal with, but other than that, I hid well. I have also realised I grew up with a parent who is autistic. This person still doesn't know it.
100% Absolutely true! Love this video. I also was self employed, couldn't keep a job. I'm now 68 and retired, but it was a real struggle to get here. I believe is was because of the stereotype and lack of understanding that made this happen. I am currently seeking a diagnosis. The last time I tried the doctor said I was too social. I'm an AUDHDer ADHD is great at masking my lack of desire to be social. I was hight masking and did well going under the radar. Thank you for sharing your experiences! They make a huge difference to paving a path to understanding.
When I was told about my autistic traits, I wanted to prove them wrong. So, I did some research... well, a lot of research and that's how I found out what a special interest is, and I learned something fundamentally new about myself. It only took me 50+ years to find out... sigh...
This is by far the best ,most succinct video of MY autism, i am turning 74 soon, and self diagnosed- both siblings on spectrum, as well as my deceased father, who was extremely low functioning but held down a job. My pa was born in 1912, my sibs and i in early 1950, so absolutely no recognition of our disorder existed and we had no choice but to mask, mask mask- i am depleted of energy - i am ok now just tired of the neurotypicals and their complaints.............
I figured out I'm autistic at 71, 3 years ago. Someone I admired mentioned she'd been diagnosed as neurodivergent. As a word nerd, of course I looked it up. I was gobsmacked. It all made so much sense. I grew up before autism was well known, even to doctors. My parents had no idea how to deal with their youngest kid who was too scattered, too noisy, sensitive, picky, unmanageable. I was smart but didn't 'apply myself'. I didn't make friends or eye contact (look me in they eye when I talk to you!) So by my teens I had learned to hide my feelings at school, and from my parents at home. I always had one or two good friends, but groups made me uneasy. I joined stuff just to seem normal, and to gain the acceptance and friendship I craved. In my 20's I rebelled as a hippie and free spirit. Grass made me too introspective, but alcohol made me forget. Fortunately I had the will to finish college though it took me 9 years and 4 schools on 2 coasts. And I got sober, came out and fell in love with a woman who I now see was neurodivergent as well. But after 19 years our differing ND traits had rubbed both of us raw and we parted. Now I'm retired and spend most of my time alone. I live in a small city and it's hard finding other older autists.
Overlapping conditions for me it’s my hypermobility. I rock and sway my body all the time but now I don’t know if it’s because of the hypermobility or the autism. But surprise, it’s one of those conditions that are highly related to the other.
Thanks to you, I now have a blue Nee Doh cube. Can’t keep my hands off it. I’m 62, and I am scheduled to be assessed for Autism on July 1st. Been fighting anxiety and depression my whole life.
I’m glad you’re enjoying it as much as I did when I first got my very first Nee Doh. It also helps me with my anxiety and depression - even when I’m at work, or the hair salon, or appointments, it helps a lot to keep me calm.
Just a whole awareness thing - and if you are an adult who doesn't have a child, who then gets diagnosed - then chances are, unless you happen on someone who "knows", then you'll never get diagnosed at all ... That said, it really is awesome that more people get diagnosed now - and younger - but also older - because it explains so much of what's going on for people - and, even more, it actually means that we end up with role models in the places we want to see them - and, no longer is it hidden away because some people think that "an autistic person can't do X, Y or Z" like it was when I was younger.
I haven't been diagnosed, but I clearly had problems as a kid. However, when I was a kid, autism was considered super rare and only occurred in males. Instead, I was diagnosed with hyperactivity because of my emotional and sensory sensitivities and my meltdowns. However, I don't even think that is right. BTW, I am glad someone has mentioned the extreme anxiety autistic people get. I had no idea that it could be related to autism. I mostly thought that I was crazy because I knew of no other people who suffered from the anxiety over little things like I had. Right now, my life is pretty stable and my anxiety is way less. Having less anxiety allows me to step outside my comfort zone and do new things now and then.
I understand the masking, putting on a good face for work. Then I come home and want me time. It's been hard in relationships as boyfriends don't understand I want to be on my own. My IQ is high it was tested when I was 16. I haven't been dx but I see traits in myself and my daughter
That was an excellent list. I think that mine went unnoticed in part because most of my family is actually autistic as well so to them I seemed fairly normal. Now that I am very educated on autism I can pick out all of my wonderful autistic relatives and on my maternal side that is almost everyone. Also..I am 49. I grew up in the 80s. They were not diagnosing anyone with anything back then.
im so happy that i can listen to you without background music. (there are still distracting sound effects). now i would like to see you, but i have to turn the screen away from my autistic eyes. so many camera changes and inserts and dreaded stock photos. please inform your editor.
Females are usually diagnosed as anxiety, depression, or Borderline Personality Disorder since "girls can't have autism". I wasn't diagnosed until I was 50 years old.
Our generation got screwed because medical professionals didn’t know enough. I was misdiagnosed with everything but autism. Took me 41 years to get the correct diagnosis. Things are changing. Now many more autistics are being diagnosed- including girls.
I'm late 50s. Autism and ADHD make the most sense of my life to me now. I'm not feeling hopeful about the process as I seek help and assessment for Autism and ADHD. The process is not inclusive of neurodivergence and not nuanced from the get-go, nor do the tools and knowledge appear up-to-date. I don't have funds to see specialists, so shall see where this path leads. But I now dread the process after the "intake" and am questioning whether I should continue. It's far from harmless and I feel like I'm asking for scrutiny when I should be protecting myself. At least I know from this video and comments that I'm not alone in this experience.
I got diagnosed last Oct at age 50. I was always the class or workplace clown who always worked out an efficient way to do things. If it got changed I would struggle but ultimately adapt. I hated - I mean HATED that social game so I avoided outings as much as possible. I can now point to the multiple meltdowns over the years and go 'ohhhhhhhhhh'. I was undiagnosed cause I played the game well but was also labelled 'anti social' and/or 'introvert'.
I’m self-diagnosed. I got teased, bullied, and even punished for what I now know are symptoms of my autism (stimming, melt-downs, hyper-focusing on subjects). My parents had me tested for autism when I was a child, but back then, it was assumed that ALL autistic people were mute, so I “couldn’t possibly be autistic.” I’m actually hyperlexic, and learned to read when I was 2-3, so I was “too smart” to be autistic. I’ve been tested a few times since. The last time, I was told, “Your score is right on the borderline. You’re probably autistic, but I don’t want to ruin your life with that diagnosis….” Meanwhile, I’m here like, “RUIN ME? I’m already ruined! I can’t function in society and can’t get the help I need UNLESS I get this diagnosis!” Nope.
Great and informative podcast, friend. I'm 47 and getting tested for Autism soon. It's very freeing though, to realize there are REASONS for my bizarre behaviors..
43yo F here … and when I recently sought diagnosis, after only a half’hour interview (and without reviewing my 3 questionnaires - which turned out to all state YEP) she told me “You’re definitely neurodivergent. You just don’t meet the current criteria according to the DSM-5 … and a bunch of old white males.” Will be seeking a second opinion soon - especially regarding the questionnaires they had me fill out.
I've sought a diagnosis for ADHD and was told that "these symptoms only occur when you're in a deep bout of depression or anxiety, and you're very intelligent" as the reason I wasn't diagnosed and honestly that really turned me off from getting any further professional help with my struggles. Now I'm wondering if I'm also autistic but I mask it well. Your videos have really resonated with me and made me rethink a lot of my own experiences. I'm 33, btw, so this would definitely be a case of someone flying under the radar for a long period of time, but I've reached a point in my life where everything seems like a struggle. Most days I find it hard to make it into work or even shower and I don't know why.
As a little child I was seen as quiet and shy, then when I went to school, they added on "not very bright" but it was the 50s so few people knew about autism. I talked very little, only to my Mum really and in whispers but at 8 with a good teacher, I learned to read and write and began to talk. As I got older, I got increasingly anxious but couldn't identify my emotions properly (still can't)so I only really felt sad or afraid. I was easily manipulated and suffered trauma from abuse but it was "normal" to me and I began to feel increasingly different and unable to cope. I had my first "nervous breakdown" in my teens. The rest of my life until I was 67 was me being a weird failure, dependent upon antidepressants and sick to death of it all. Now I know that I'm a high masking autistic with ADHD I'm not high functioning but many people would give me that label because they saw me doing what I could do, not struggling with what I couldn't do because of the mask that I didn't even recognise myself. It was second nature to me to try to fit in, to not show my "weaknesses" and vulnerability, to please people and hide my discomfort. In the past 5 years I've been able to ease bits of my mask away but honestly, people don't like it......only my very nearest and dearest understand and let me be myself. I'm kind and caring still but a little more confident and frank......it's perceived as rudeness, smugness or being awkward and argumentative. I care about that and it hurts. I'm just beginning trauma therapy for my CPTSD and hoping it will help but I'm often bitter because of how I've been treated. The manipulation by people I trusted and the gaslighting by medical professionals have left me a physical wreck. Most importantly of all, I just want children today to get early diagnosis and proper support but not therapy that makes them act like a neurotypical 😢
I also don’t pay bills. My husband takes care of this. I used to but it got to overwhelming for me. The older I get the more difficult it is for me to keep masking. I just don’t have the energy to keep up with it. I am currently working part time, cleaning offices after they are closed and no one is there.
I've never truly felt normal or like anything makes sense until I've started looking into this, I honestly had no idea Sheldon Cooper was a depiction of the spectrum but he was always a very relative character for me, tiny things like that compounding together makes me see it all like a spotlight shining on it
I also live in my own world, not realizing how much time goes by without speaking to friends and family. However, i check the time ALOT. No jokes. I don't like a wristwatch bc it's just too uncomfortable. But i have a clock in every room. Even the toilet and the bathroom 😂🎉 and also outside. i really need to know the time. And check every few minutes. It's like breathing.
I can tell you right off, before even watching the video (which I did), that many of us simply cannot afford diagnosis or do not have access to properly trained professionals who can truly diagnose autism without bias or prejudice, or getting too "by the book" to see the real autism and not just academia. I totally hear ya, Chris, when you say you saw a dozen medical "professionals" before getting your correct diagnosis. I've heard this happens to many of us autistics, and I can attest that some can be outright harmful. The last clinician I saw, when I was at an absolute breaking point, so utterly stressed I was sobbing and falling apart in her office, on the verge of a nervous breakdown, and she sat there YELLING at me -- in front of my husband! -- and accusing *me* of this that and the other, making it all "my" fault when it had nothing to do with me. Only later did I realize she was clearly narcissistic, possibly psychopathic. The way she twisted everything I said was classic narcissism/psychopathy, which I grew up with as both my parents were narcissists. I've found that a lot of narcissists become mental health professionals specifically because it gives them a steady stream of victims to abuse: patients willingly come to their offices. (Similar to how many child abusers become priests, etc.) Being autistic is a very difficult road.
Ok so here’s the thing…”invisible”: you’ve GOT TO THINK CRITICALLY! WHO IS TRYING TO PUSH YOU DOWN?? WHO is gaining from this?? If it’s JUST YOU? Good. Not? No. Get away.
Are auditory processing issues universal among autistic people? I ask because I notice a great deal about your experience that aligns very closely with my own, but I have NO issues with sounds. At all. In fact, most of my hobbies are inherently loud, chaotic, and at least a bit social.
Plus, when you're seen as smart, people write off everything you do as just being a weird smart person who should stop complaining about your struggles.
For 29 years I thought I was just an eccentric who noticed other people were often irrational and unpredictable. "Wait. That's autism? But I can talk just fine". There's nowhere near enough information given to people growing up when they need it. Or, there wasn't in the 90s and 2000s.
I had that experience. Just smart and being a little baby about life. Man up, they said. Heh. I see now what was actually going on.
The fact that you said you can pay attention better without eye contact... I totally get that.
My friend stopped talking about their trip because I wasn't making eye contact...
I had to tell them that me not making eye contact is actually a huge compliment, it means I am super comfortable and no longer masking
I have hearing loss. Genuinely. But I admit that sometimes I overdo the turning my good ear (rather than my eyes!) toward the speaker, because they know I don't hear so well, so I get a pass. What they don't know is that I'm not looking them in the eye because I actually DO want to hear, really hear, them, and not be distracted by eye contact. Plus, I complement the effect by giving them repeated if not sustained eye contact while I'm talking. Then they talk and I go back to "talk to the good ear, please." It works really well.
It’s nice for us NT to know that
Agreed! I can’t make eye contact. If I do, people might as well talk in one ear and out the other. I just can’t focus and it’s so uncomfortable
Spot on✨👍
If I'm looking in your eyes while you're talking I'm definitely spacing out.
If I'm staring off into space I'm super focused on what you're saying, like you would while listening to an audiobook or podcast.
Who's eyes do you stare into when listening to a podcast? Do you not think you're able to pay attention to your podcast just because there's no eyes to stare into?
NT assumptions are inconsistent.
This comments section is comforting to read, we are not alone 🐾🐾
That applies to many UA-cam videos about autism.
I even follow a channel that is about a special interest (that is not actively advertised as such) and has a significantly ND followerbase that is wonderfully supporting.
An angle that you didn't mention is that I believe Autism and ADHD both have an inherited component. So I grew up in a neurodivergent household, that was my 'normal' and I didn't know or understand how different I was until later in life. At school the bullying was a tell; that and being a quiet studious type meant I got praise for my independence and maturity. No one noticed or at least commented on my anxiety or my lack of social skills. Later I went on to male dominated and fairly high ND careers in engineering and computer science, so again kind of stayed in the community. I remember Dad encouraging us to 'people watch'; that is totally code for 'how to learn to mask'!
A week before I went off to college, my mom (who was probably autistic) said that I was the only person from my high school going to that college, so nobody there would know me or have any history with me. She said I could be whoever I wanted to be. I interpreted that as encouragement to create a brand new personality for my masking.
I decided that I was going to be outgoing and social -- quite a change from what I had been before. It turns out that successful masking depends on what you have observed, and what you are capable of perceiving. I have come to realize that there are certain social/emotional signals and non-verbal communication that are outside my ability to perceive. Plus, I only saw outgoing and social people in certain situations. So that meant that my attempt at mimicking failed pretty badly. It was also orders of magnitude more draining. So I reverted to a mask that was much closer to the real me.
With autistic parents you may also sometimes have very good conditions at home for an autistic child, spa that at least at home things are well and understood. It's unfortunately not the reality for all, but at least a bunch of autistic kids do not struggle too much visibly as kids for just that reason.
I so resonate with your comment. Just this year, after doing major trauma work (age 54), have I realized that I am autistic, and so is virtually all of my grandfather's descendants. With so many other people in my family having meltdowns all the time, I was on constant overwhelm and went no contact for decades. Now that I have a name for why I am the way I am, I am finding more compassion for them while also refusing to engage with what I now know to be their lack of self-understanding.
Same ND household so I never had to mask and was an eccentric child to others then I had to interact with others and started masking without knowing it.
In Norway probably 95 % of the autistic people are undiagnosed/ unnoticed. We are faaar behind the US, Australia, UK
Here most people, authorities and health personnel still use the term Asperger and think that autistic people are non verbal and hardly able to work.
In reality there are thousands of autistic people all over. And most of them have no clue why they’re struggling.
I realized I’m autistic last year, age 63, after watching videos like this. I really wish I knew 45 years ago.
So I'm in Germany. My teen, 17, is really struggling in school and life in general after having no problems until two years ago.
Husband and little sister have ADHD. We went to a child psychologist to see if she might have the inattentive type of ADHD, and to be honest I think she might also be autistic. And this child psychologist, working at a big university hospital, told me that " if the teachers haven't noticed so far, she hasn't got it".
She thought it's depression. Even though the symptoms don't actually match to that properly. Or at least I think it might be caused by ADHD/autism.
That's how it works in Germany. It's ridiculous. Way way behind the US.
The same with me. I was denied a diagnosis, last week. I have to take it private and that kosts a lot. I'm 52 years
@@jaosandv I don’t care about an official diagnosis. I actually think I know more about late diagnosed autistic people than most healthcare personnel. I tried to get an appointment at a hospital last year, but was denied because “I don’t struggle enough” Sure, I’m just not able to work any more, I’m in a constant burnout.
And there are so few resources, so they better use them on younger people.
@@biaberg3448 When you know how mutch monney we have in Norway. Why the f. cant we use them?
I don't think Australia is really all that better, its a big country and basically only those in cities get any sort of anything. there is nothing for 1600km around me.
I am just realizing that I am autistic. It has answered so many of my questions about being the way I am. I learned how to mask and tried to be the person I thought someone else thought I should be. My autistic traits went unnoticed or just labeled as me being a sensitive child. In the 90’s raised by parents that did not know anything about it, they saw it as tantrums and me being spoiled…. Yeah, no.
I also learned I was probably autistic last year and am in the process of getting a diagnosis. I’m also born in the 90’s. I went undiagnosed because a) I am pretty similar to my mom and she had patience with me because of that and b) my mom was scared of the stigma, meds that could change me and me being taken away from her since she was a single mother. She was just scared and left alone.
Wishing you the best for understanding yourself and getting the support you need ❤
Aww, I'm sorry. ❤
@@Sarah-with-an-HSame!
Congratulations, it's a huge feeling!! I got my diagnosis about a month ago and in the time leading up to it, sooo many dots have connected and the level of self-compassion and understanding that happened almost immediately absolutely changed my life. Like seriously. Keep exploring what feels better and be kind as you learn! It's a big process! ❤
When I was a little girl in the 60s, I was hospitalized for pneumonia and high fever. I was a "painfully shy" little girl, who also twirls her finger in her hair. In my little fevered, terrified state, I twirled my hair so much, that I kind of went bald on one side. The nurse asked my mom if I was the "r" word (a word used frequently back then). Mom had a fit! It wouldn’t be the flash time someone asked my mom that. My mom used to tell the stories over and over to friends and neighbors. I grew up thinking I was a little bit of that "r" word. Learned a lot of masking as an adult.
One of the main reasons I remain undiagnosed to this day is that I hate going to/talking to doctors/therapists so I just avoid it. It's hard to get a diagnosis if you refuse to speak to those that diagnose.
They can’t diagnose something they don’t understand, reading something in a book is not an education.
Personally, I think it would be wonderful if we could grant access permissions (for our minds) to trusted professionals. It's the seemingly endless 'stop stop start' that is seriously depressing my diagnosis journey. In the UK, we have to be assessed for ADHD before we can be assessed for ASD. That takes months. A whole lot of waiting and a fair bit of preparation for every stage. It seems like therapy wants to throw every other possibility at us, first, before assessing for autism. It's, probably, extremely damaging. Meanwhile, we become increasingly reluctant and avoidant - particularly if we can force some sort of stability around us. When we're not in the midst of a storm - getting us to stop sailing and try to demonstrate the rocking the boat for half an hour, so that the next therapist can tick some boxes and redirect the case notes, is no small ask.
I had negative experiences in the past, but sometimes it takes persistence, which sucks. I was finally able to find a therapist I really get along with and she was able to connect me to a doctor who was amazing and completed my assessment. I know it's hard, but it can be really helpful, both in the short and long-term. I'm fortunate to live in a major city now, which was not the case growing up (no clue what would have happened if I had an assessment when I was in school?). Regardless, I hope you're able to show yourself love and compassion with whatever is going on in your brainspace and body ❤
@@its.me.mj.anotherone In what ways have you found it to be helpful? I'm genuinely asking. I've never been able to come up with any clear benefit. It sounds like a lot of time and discomfort invested to find out what I already know, and then... what? I don't know.
I can’t seem to find someone who can diagnose me. It’s frustrating.
I was recently diagnosed at 43, very adept masker, and very high IQ… I was abused by a coach at college and was never the same, but always suspected ptsd. I was forced into working at restaurants after the abuse derailed my college plans and I was avoiding the hard science classes where I belonged, because they reminded me of the semester I was abused. I couldn’t ever hold down a job for very long, but I must have worked in 20 restaurants as a waitress and bartender, and I learned to mask like a ninja. No one would ever have guessed, except when I would sometimes miss jokes, but I would play it off as being a dumb blonde. Forcing myself to go to each and every shift was like a nightmare. Sometimes once I got there it would be busy enough that I didn’t have to talk to anyone and there was an amazing peace that I found in the chaos. When I was a high volume bartender for a short time I was finally ok. I would wear earplugs and lose myself in the music, and it was too loud to hold a conversation, and I had a barrier between me and the rest of the club, and I could be “part” of a social situation that I would have never been able to navigate if I was on the other side of the bar.
Unfortunately it was short lived, and life has been an immense struggle. Diagnosis has helped me understand that I’m not weak or incapable, just different.
💓
We excel when there is that barrier between us and the crowd.
Reasons why I think I went undiagnosed:
1. My ADHD hides the Autism, which hides the ADHD.
2. My siblings and parents are all NT. As the middle of 3, I think I was perfectly positioned to learn what "normal" behavior looked like, according to my age.
3. Media provides an excellent source for an autistic person to learn masking techniques that further hides the autism.
4. This is more personal, but I've always struggled with asking for help, even when I needed it. Thus, in school, I was the quiet kid who was praised for my independence. Nobody looks at a student like me and thinks to ask what's going on inside my head. Obedient, studious, and self-driven, I wasn't a problem. Thus, nobody suspected I was struggling.
I was Dx with ADHD at 23, ASD at 32. I met with dozens of mental health professionals between those years (receiving several wrong Dx), and nobody caught it because they weren't asking the right questions because, like you said, non-autistics don't know much, if anything, about ASD.
Wow, it sounds a lot like me. Except I am 60 and have never been truly, properly diagnosed at all (I was labelled "hyperactive" by a GP at 3 yo and sent to preschool early as a treatment for chronic extended meltdowns, and this worked, the meltdowns ended and everyone forgot about me).
I was a finicky kid, lots of sensory aversions and also sensory seeking. No one knew what that was. I was the "oddball" or "antisocial".
Earlier this year my friend, in her 50's was diagnosed with autism, she is also ADHD. She kept referring to me as autistic.
I kept saying "I'm not autistic".
I think I am though.
I don't think I masked much, but your story is similar to mine except I was diagnosed with ADHD in my early 40s and and ASD at 54.
@@BipolarCourage No, that's not the experience of a lot of people who are AuDHD. ADHD covers some ASD symptoms and some people with ASD notice that their ASD becomes more obvious when they are medicated for ADHD.
@@BipolarCourage BD and BPD
@@christinechapman9764 I had sensory issues from early on. Aversions to sound, touch, taste, textures, and smells. Yet I sought out certain sensations, particularly touch and sound.
Intelligence + autism = CONSTANT exhaustion...
Yes 😑😞😵💫
Agreed my friend
I didn't even know that I've been exhausted all my life... The only indicator was I've never felt like I've lived to my full potential, not even half.
I'm much kinder to myself about that now. It is so freeing to KNOW what is going on and why I get tired. I never knew how hard I had to work...how much energy it took to appear "normal"...until I stopped trying so darned hard.
I was diagnosed in my 50s as a result of my son going through his diagnosis. I can now see that my father was also autistic. My diagnosis gave me the chance to look back on all my “mistakes” and “failures”. Now me and my son, who is 20, really try to use it as a superpower.
Thanks for the great videos!
I wrote my book Living With Autism Undiagnosed to help other undiagnosed autistics recognize their autism, and to help the rest of the world understand us better.
Can you post a link so it can be purchased?
And to make some money. Let's tell the whole truth here....
@@CowboyPants-h5p nope, it's just costing me money
@@CowboyPants-h5p Nothing wrong with that.
I suspect one reason for going undiagnosed is that many of the challenges stem from experiencing more extreme versions of "normal" human experiences. For example messages like "everyone feels anxious sometimes" do not take into account the degree or frequency of anxiety.
Also... women and girls. We are often misdiagnosed as being bipolar or having bpd or having anxiety/depression and that's it. The misconception that autism occurs more often in men and all the symptoms being defined by the male expression has hurt women tremendously and so lately that is becoming more clear and we're seeing more diagnoses of women. In addition, people who are non-binary or have other gender expressions are also being more studied and considered, when in the past the therapist may have only focused on their gender identity and not on their neurotype.
Also anger problems. That is what everyone said was wrong with me, I was prone to anger outbursts and had no ability to control anger. And then anger management techniques did nothing for me so we kept looking. Then my nephew got diagnosed and I was researching how to be there for him and like many others went uh oh this is describing me. Doctor actually thought I was already diagnosed and just not talking to her about it because people hide it.
Well, yes. Basically very few autistic women who were kids in until 1990's had ANY chance of getting diagnosed because the view on autism was based solely on boys.
And there are still way too many healthcare professionals (not even talking about others!) who aren't really up-to-date with their views.
Yes, my therapist and I talk about BPD. I do have abandonment issues, and my BPD represents quietly so I basically attack myself until I can't hold it in anymore and BOOM. I always feel awful because my anger comes out around my loved ones. They don't deserve that, not that anyone would. It seems like a stretch that I'd be autistic, have BPD and other comorbities. I don't want to keep collecting diagnoses, but I do want to understand how I tick and how to help myself.
@@awkwardemily15 you sound so like me, with the abandonment, BPD diagnosis, and anger... I think a lot of traits described herein can overlap with non-autistic people too.
@maniSmash . I'm a white male born in 82 and all that happened to me . I was diagnosed (by medical professionals)5 yrs ago. It's a really hard thing to go through for all of us autistics
50+ years undiagnosed due to coping skills developed from highly-introspective analyses of how things seemed to work around me combined with way too many self-preservation skills from childhood trauma. It all adds up to an interesting tool chest of skills for adapting to the world (and people) around me.
I too experienced childhood trauma around 4 y/o which surely kicked in survival mode, a go unnoticed way of being, I honestly have no idea what is me and what was necessary. It’s definitely worth untangling but feels sooo daunting. Onward I go!🙂
This! I'm 43 diagnosed ADHD last year, which makes things more sensible in my life, but I definitely have some autism traits (inability to make eye contact, sensory overload in certain settings, stimming, a deep aversion to small talk or non deep convos), buuut I also have childhood trauma from being raised in an alcoholic verbally abusive home. Untangling all of it is hard, what's ADHD, what's a trauma response what's possible autism. Ultimately I'm working on all of it, because I want the best quality of life I can give myself, but it can be exhausting being non stop dismissed from the autism conversation (notby anyone in this space, just friends and family) because I'm really really good at masking my discomfort.
I prefer to think of it as a shell rather than a mask. That shell is all of our experiences and how we reacted to them. Does that make it a bad thing that needs removing? My shell is my mask. At first sight (to those who know and are looking) it's all trauma response - but it's gone through decades of recombination and Kitsugi and the pieces are speckled with mica. I would like it if people could be content with just looking rather than having to handle. For many people the first thought seems to be, "Will this re-break for me?" as everything to do with society seems to be about jostling egos. Everybody thinks they're in virgin territory and entitled to plant a flag or that it's their destiny to remove the sword from the stone.
Our interesting tool chests may each be unique to us. I think, though, more often than not people can swiftly tell there is something very different about us. Usually, any speculation stops where it's delightful or beneficial for them. Beyond number are the times where I've been told that I seem to understand the human condition better than anyone before. To me - it's basic curiosity and interest and it's really depressing that I might be the first person, that somebody has talked to, to have manifested it. It makes me think we live in a world full of extremely disinterested people.
40+ and yup.
Same here. I recently got diagnosed because I wanted to know.
I think a reason you missed is "because you're old". I'm a senior (female) and when I was young in the 60s, there were no 'isms' - just 'weirdos'. At various points in my first three decades, I was referred to professionals, singled out at school for being abnormal, or sought out therapy as an adult, but there was no awareness at all of things commonly diagnosed today (autism, ADHD etc.) so I never received any useful support. I had no idea what was 'wrong' with me until family members started to joke that I was like Sheldon on Big Bang Theory (I am), and that eventually in the long term led to self-diagnosis after I had retired (after periods of mistakenly identifying with labels like 'mild depression', Highly Sensitive, Introvert, short-tempered etc.). It seems so obvious now - I wish I had known during my working years because it would have made such a difference.
I feel you! All there was growing up was "dyslexia" in "my world". My older and younger bros are dyslexic. I am a female middle child, forced to adapt and deal since I have a memory (or before probably). The idea that I needed support, or had a cognitive difference (vs being over sensitive, whiny, friendless, demanding, shy, grumpy) was just not-possible. Now that I have an idea of why, I am between elation, and tears (because the list of things I thought i was, all that negative stuff in brackets/parenthesis is super triggering because I have heard it all my life and felt so horribly responsible for it.) Decades of internalizing shame brought on my a cognitive/neurological difference will undoubtedly take a while to come to terms with. Like you, I wish I had know earlier-or even just been afforded a little grace from the people nearest "and supposedly dearest) to me.I do not yet understand what it means to have a safe place where i can comfortably unmask. I wish you all the best, and hope your next many decades are filled with self-discovery and acceptance from those around you.
For women even middle-aged is enough. The official view on autism was very male-centric still in the 1980's, I think even until the end the millennium.
So by default you can assume almost all female autists that were born until 1980s to have been diagnosed either as adults, or not at all.
This is exactly it! We were just "weird." Autism was not well diagnosed when I was growing up in the 60s anyway, especially "higher functioning" ones (before being mean, please help me with more accurate and up-to-date terminology). But girls were never even considered as autistic as it was only something that happened to boys. Oof.
Now, in my 60s, telling friends I've known for years that it turns out I'm autistic and they just think I'm attention seeking - another weird behavior. Can't win for losing....
@@margefoyle6796 yes! Told my family and they also think it's just me being 'weird' again, I'm sure they don't believe me. Told a couple of friends who were taken aback at the TMI and just dropped the topic. So I'm not telling anyone now.
@@wannaknit I feel you. I found a good therapist, I think they are neurodiverse too so unlike the previous one, they do not compound my issues. Anyway, with their help, I am learning to accept myself as well as set boundaries. Most people around me are annoyed, irritated, taking it personally. I teach (1st grade-College. Multiple jobs) and believe in meeting people where they are and acknowledging their experience as they express it. Obviously, this is very important in the social-emotional sphere. So few people actually give this to their loved ones. It sounds like your community needs to figure that out. I am very sorry that you do not feel safe and accepted in revealing your true self. I really understand you, as I have masked 24/7 and never found a safe place to be me, until very recently. And that is only because it has gotten to a point where I am ready to get a giant flamethrower (death ray size) and burn my life to a crisp. For now, all I can do is send you encouragement and virtual hugs-side hug if that is what you prefer, or an air hug-I can meet you where you are at with love and respect, which is what we all deserve.
I was diagnosed at 58 when I was unable to mask as I had before. I had known something was wrong but was able to hide it for many years. But as I grew older, I had difficulty coping, my anxiety grew worse and finally I sought treatment. It took awhile but was finally accurately diagnosed.
Same, 57, I was in total crisis. Still trying to recover from the autistic burnout.
Same happened to me at 56
Same at 51. Masked all thru training and career, exhausted all my inner resources.
diagnosed ADHD age 47, now self identified as AuHD
I feel so much better hearing other people’s stories!
It’s really helpful to me that you’ve described your experience this way. I’m not diagnosed but have consciously masked to fit in since early childhood. Since having a stroke a few years ago, I find it’s just too much hard work to mask, so I’ve withdrawn from social situations as they’re overwhelming now. Not sure whether it’s worth the struggle to get assessed/diagnosed now, so just live in the way that’s comfortable for me.
@@eh6454 if you are still working a diagnosis would make you eligible for accommodations. But the processes aren't easy.
71 and only recently diagnosed. Highest tested IQ = 170. ADHD, PTSD, severe anxiety, with a host of physical issues as well. I stopped being able to mask about the time Covid hit. Partly from Covid and long Covid (8 months of that), and partly a series of falls. After 3 years of trying to get help, I may have found someone.
Several of the things you mentioned hit home for me. I have never been able to manage time. I’m either deeply immersed in something, or I have no interest at all. I mentally check out if I can’t ask questions when I need to, and by the time I’m allowed to ask, I can’t remember what the question(s) were. I could go on, but I’m already forgetting what I wanted to say.
oh wow, that's a pretty high IQ. Did that help in any way? For me people seemed to cope with my quirks (yeah, metldowns) as they really liked my good analytic skills.
@@assimilateborg No, it did not help. If anything it made me seem weirder to my peers. My analytic skills pissed people off. I angered people in college, medical school, and law school. Even worse, while I enjoyed school, I hated having to practice with real life people, co-workers and patients/clients. Not because I didn’t like them. I simply hated the stress.
I was diagnosed last year at 49. I am extremely high masking with a high IQ, which probably contributed to the late diagnosis, but my money is on lack of education of healthcare professionals. It's really, really bad in New Mexico.
I don't mask much anymore, which has made it next to impossible to deal with NT people. I am so tired of trying.
I live in New Mexico too. I was diagnosed last year at age 47. I don't think that at our age we would have been diagnosed anywhere unless we were obviously autistic as children. Asperger's wasn't in the DSM until 1994 in the USA. So we were already adults when that came out and adult diagnosis was rare. Maybe if we were born more recently they would have caught us but not back then.
Self diagnosed at 54. 72 now, also I'm Mensa. I was called strange, weird, lazy, stupid. Made to feel like I was nothing. My father told me I wasn't worth much. My mother felt that she failed, so she blamed me. My sister wants to have guardianship over me, because our mother said, when we where children, that I could not live alone, even though I have for 50 years, now. I am strong. I have had to be. Not sure if an early diagnoses would have helped. Probably have made it worse and easier to have me put away.
My thoughts are with you, stay strong. But also? Look around and see who you trust with your medical decisions if something were to happen to you. If you had a stroke or a brain injury who would you trust to take the reins - and let go as you healed? I had a brain injury which transformed me from a functional person to one unable to hold a job. This does not mean I cannot live alone. It means it would be a lot less stressful if I had help with paperwork, but I can - and do - drive and live alone.
If someone is trying to take control of you, then you need a plan in writing, agreed to by your emergency support person or people, that is made into a legal document so you are protected if you become injured and temporarily require in home supports. If you cannot afford an attorney,look up autism support in your area or check with your nearest university law library.
Hope this helps!
@user-kt5cp7lv5e
I have no one. I recently had two operations, one I was hospitalized for almost three weeks. I am old if I die, well I was going to get around to it one of these days. The doctors and hospital does not have any in case of contact info. Legal documents are a prepaid cremation and a will. My sister gets nothing.
Autism support is worthless here. I reach out to them for help changing jobs. They could not help me because everyone who know me as a child was dead. I was the oldest of anyone still alive, and therefore could not be diagnosed. Not their problem. I have no one in this state. Closes is three states away. Paperwork is a stress, but being dyslexic it always was. Now with spell check I do OK. I am calm and happy for the first time in my life. Only wish when I die make it quick.
I turned 60 this year and have no real hope of getting a professional diagnosis however the community here has been invaluable to me in my journey of self help and discovery. Burnout have got me in it’s grip right now and honestly I feel I lost all ability to mask so I’m hiding out at home unless I absolutely have to leave. Thanks to all sharing their experiences to help others. 💖✨
I hope you get well soon 💚
I’m 50 this year and feel the same way the only time I go out is when I have to. I go take care of my parents, I run to the store (in and out as quick As possible) and I walk my border collie pup. Usually for several hours a day… alone and in, typically, quiet places. I have had people ask to walk with me and I usually try to say no. I need that time alone.
I turn 60 in a few months and I could have written this word for word. My last job I worked publicly was in customer service until I had a meltdown of epic proportions. I did managed to hold the meltdown inside until I got home. That was five years ago. I rarely leave the house because I think I'm burnt out from masking for almost six decades.
Add me to this … stay at home, pick up groceries and have things delivered. It’s lonely but also stable, removes the fear of meltdowns… this channel is lifesaving ❤
I just turned 60 as well and was able to mask for many years until menopause symptoms made it impossible to continue. I am still trying to get my health and energy back after a few years. I look for little ways to make each day special. I focus on enjoying my day rather than being productive.
I hope you feel better soon. ❤
The "I'm shyyyy" stim makes me laugh and I now hear it at random times in my head. 😊
That’s awesome!! I’ve found a whole range of new uses for it since realizing why I say it so much 😆
😂😂😂😂 Loved it and run it back often.
Discovering autism and masking later in life has been very impactful for me as an alcohol addict. I could never fully communicate my relationship to alcohol because for a long time I was taught that being neurodivergent was even worse than being an alcoholic. I blamed everything on the drink and played like I was perfectly normal and just a little bit of a party animal. I avoided diagnosis for more than 30 years, but I'm really glad that I finally found a therapist that saw my problem.
Getting older (66 now) has made masking more difficult. Yes, even when I didn't know I'd been masking and when I couldn't, therefore, calculate that what was getting harder WAS masking. I just knew that...well, SOMETHING was getting harder. Like for instance keeping it together through hours-long talking-forever getting-nowhere permeated-with-hivemind-signalling-and-jousting committee meetings of one kind or another. Over the past 20 years or so these meetings and the whole insane (IMHO) set of rituals connected with them, the emotional subtexts, the pregnant silences, all the stuff you know everybody's avoiding saying, all the conclusions and decisions you know 100% from Minute One that the meeting will inevitably come to but for some reason The Hive is playing this excruciating, nauseating charade as if we can't and won't know until we finish this ritual--it's both mentally and PHYSICALLY shattering to me, I mean like a dull but sustained cattle prod shock to my gut. Sometimes I just have to do a bathroom break simply to pull the molecules of my brain together out of the air where they've been whirling around me like a pulverized solar system and collect them again into some semblance of a person I once knew called Me. And whisper a quiet prayer, "God help me, God help me, I can't stand this, I just can't stand this...." I was pretty handy at tamping all this down and gliding above it, like a singer with a bit of a cold sometimes just has to "sing over it." I didn't KNOW I was doing that, but I did it instinctively. As I got into my 50s and 60s my capacity to "sing over it" incrementally disintegrated and I would find myself at these meetings barely able to conceal the existential horror at the whole proceeding from my face. One way to conceal it was "eyes closed in deep reflection," ostensibly on some gem just offered by a meeting member. When really, of course, it was a silent prayer, "God help me, God help me...." Now, at my ripe old age of 66, after knowing about my autism for a year, I feel...I'll say it...entitled to simply bow out. To say, "If you want my input, here it is in advance, in writing: 1, 2, 3. But I don't need this meeting and the meeting doesn't need me."
Love, love this comment!!!
You are awesome!
I thought for a long time it was just because I was getting older but now I know better.
@@barbyoungberg Yes, it is such a sense-making realization, isn't it. Rather than being an inexorable process you have no say in, you discover that it's...well...perhaps still in some sense inexorable, but actually something you have choices and prerogatives and...really...power in. You're not the problem, the authoritarian rigidity of the Hivemind and all its unquestioned rituals is. Carve out your true self's niche. Sure, not arrogantly or obnoxiously--we don't want to be that--but at the same time firmly and non-cravenly. Don't let others "un-be" you.
@@noblethoughts4500 Thank you!
Recently diagnosed ASD at age 62. My autism went undiagnosed because 1) I’m female and 2)my ADHD hyperactivity and executive functioning problems were much more noticeable and my dyslexia just made me seem low IQ at school because of my extremely slow reading speed and terrible spelling. But my inability to comprehend social rules & make friends along with my general weirdness led to constantly being bullied in school, workplaces and even in church communities! Once I got on ADHD meds at age 41, the autistic traits became more apparent. Even being organized and less impulsive and less hyper, I still had problems with relationships especially with bosses and coworkers so I never kept a job for more than 2 years (or 4 years if very part time). Doing great now with my Air Bnb business!!! No boss, no coworkers but they gave me a mentor to contact when I need help. Perfect!!
I’m glad you found your place, I’ve had similar troubles with dyslexia and thinking im stupid until I took the ASVAB military test and they said I scored so high I can pick any job I want.
Haven’t found my place in the world yet after getting discharged. I’m a stay at home dad but would like to make money for the family. I got my tism diagnosis now at 32 and trying to get my military discharge upgraded but it’s hard with no help. May your life be filled with many blessings much love your not alone, we all(autism) go through the same struggles just in different ways.
Diagnosed at 74!!!!
I look back and recognize the YEARS of masking and "socially acceptable" stimming Ive utilized. Finger tapping, hair adjustments, lip biting) The lifetime of feeling like a scared freak, unaccepted, crazy, ANXIETY ridden, OCD depressive. When my therapist asked if id consent to testing and then being diagnosed...WOW emancipation...im not effed up, im neurodiverse.❤️
That's awesome! My mom is also 74 and for the last few months I've been talking to her about new findings about autism in women. I recognized the traits (very heavily) in her, but didn't want to be pushy, just offer the information. She said to me recently, matter-of-factly: yes, I'm pretty sure I'm autistic, and I've always known. ❤
Congratulations on your diagnosis ❤
I'm turning 40 this year, and I've only started my dive into neurodivergence research about a year ago.
I always knew I was different and I couldn't explain my struggles to myself, nor why all the self-help books and methods I looked into weren't actually helping.
Learning properly about ASD and ADHD has answered so many lifelong questions and has already led to so much improvement over the past year!
So I'd say that for me, the main reason why I flew under the radar for so long would be lack of awareness.
If I had a proper awareness of what ADHD and ASD were, I would have identified it in myself much sooner. When I was a child, ADHD and ASD were considered male-only disorders - as an academically gifted, non-dusruptive girl, there was no reason for me to be screened for anything.
High IQ and the combination of ADHD/ASD (which compensated for each other in some areas) helped me adapt to a neurotypical world - but even though I could function and be independent, I could never thrive. I was socially unhappy and constantly exhausted/ill.
Learning about and understanding my neurodivergence has helped me take care of myself better because I understand my needs now, and I don't feel like I'm a failure. I was just a fridge trying to be a toaster, but now I have the correct manual =)
I’m glad you found it. I just found out at 30 and diagnosed at 32. It’s amazing the relief I felt. Like I don’t suck I’m just special. I’ve been through HELL. Severely spanked as a child for stims and meltdowns. Learned real fast how to mask and it took till now to unmask fully. Sexually confused for life. Terrible relationships, death to self at 19 revived by father and medic. Then straight to the marine corps at 19, wonder how that went. Absolutely terrible. Discharged, rough marriage for 11 years and have a 9 year old son. And now to realize I probably could have avoided all that trauma if only I was diagnosed at 6-7 like I should have been and have coping mechanisms or at least know why I feel this way.
I say all this to let you know you are not alone and all of us 80s/90s undiagnosed autism children went through the same pain just in different ways. Be you, unmask and let the world see your true light we all have something special to bring to the world. Much love and compassion.
My number one reason: monotropism. I’m so focused on a few things at the exclusion of basically everything else that autism never penetrated into my bubble. Until it suddenly did. When I was 40.
Some people would described me as a chameleon because I adapt very well and I’m great at masking (but I’m always exhausted).
I know exactly what you mean!
I haven't learnt to be comfortable with large family gatherings
Anxiety left to my own social devices
I find a chicken pen and escape from the crowd
Prior diagnoses also play a big role in autism being a missed diagnosis. I am diagnosed with OCD, and this was used to rule out an autism diagnosis by a clinic that specializes in autism in Upstate New York. This was after a short questionnaire and about a 10-15 minute interview, where the interviewer said I clearly just have OCD (I remember masking by forcing eye contact, which people can usually do for a short time. I think people mostly unmask only after getting comfortable with people first.) OCD is commonly used to rule out an autism diagnosis, as if autistic people can't also have an anxiety disorder. I think a recent study found that people diagnosed with autism are 37% more likely to be diagnosed with an anxiety disorder in addition, so any test that uses that against a diagnosis needs to be questioned immediately.
OCD also runs in both sides of my family, so I'm pretty sure all of my siblings have OCD, and I just turned out to be the autistic one in addition to having OCD.
Im not officially diagnosed still, but a family member who became a counselor brought it up again after I couldn't tolerate the heat and changes in plans at our last family vacation, and they now firmly believe I'm on the spectrum, but of course can't officially diagnose me. For years I've been in and out of jobs, experiencing burnout, and having meltdowns where I'll literally punch a wall, throw things, pull my hair, scream, etc. I also hate the heat and will start sweating at the slightest amount of heat and stress. And I detest when people either change plans or want to be "spontaneous" and not have a plan. I also have always tapped things, made noises with my mouth, and stimmed in other ways.
People are going without care due to the carelessness and negligence of these institutions and our awful healthcare system in the U.S., and it makes me irate. These places need to change the way they do diagnostic tests. They should be listening to people like you on UA-cam who actually know what is to BE autistic, who have more insight into actual symptoms, rather than relying on antiquated ideas of what autism is for their diagnostic evaluations.
HEAR HEAR!! So much of what you said here resonates. ❤
That makes no sense for them to tell you that you can't have OCD and autism. It is fairly common to have both.
For a long time, doctors didn't believe you could have both ADHD and autism. Thankfully doctors are learning more about autism but still have a long way to go.@@Catlily5
Self-diagnosed here. A major hurdle, at least in the US, is the healthcare system. You said you've been through lots of therapists before you found one that diagnosed you correctly. It's much more difficult to get a diagnosis and support when you're low income and the only access to healthcare you have is a general practitioner every few years that you have to pay out of pocket for.
Yes, yes, and yes. True.
I was a young middle-class white boy once... So why did my autism go unnoticed? Trains! You see, cars are my special interest, doesn't even quite cut it, they're really integrated into my soul. Because of this I had a weird irrational hatred of trains, or at least toy trains because I felt like they were always being shoved down my throat. Like please, just give me some cars. what is this weird blue idiot train with a face on him?! OMG... So once again trains screwed me over and caused something bad in my life!!! F*** you, trains!
Trains and I actually made up when I had to take a train everyday to and from high school lol. But it's funny to think that the stereotype was potentially one of the minor factors that caused me to go unnoticed 😂
As a female who was a child in the 90s. I was constantly in therapy, seen so many different doctors. Got almost every diagnosis under the sun except for the right one. By time I was 10 years old, I'd been diagnosed with bipolar disorder, adhd, and depression. Spent a good portion of my teen years institutionalized. In and out of psych wards, juvie, group homes, and residential treatment facilities. Many of these places were abusive on so many levels. And people seem dumbfounded as to why I have been so hesitant about seeking "help" for my children. I don't want them to go through anything I went through. I have to hope things have changed since 20-30 years ago.
My experience was not as extreme, but I empathize with what you say. I spent 16 years with misdiagnosis and medication before finally getting an answer. My youth was wasted feeling sick and gaslighted and I will never forgive the medical establishment for what they did to me.
@nude_cat_ellie7417 it's a difficult thing to forgive. And sucks even more when you really need help and can never trust another therapist or psychologist ever again.
Similar experience here, I'm so sorry you went through so much pain. You deserved better. I hope you and your kiddos find support that heals and helps you rather than "treatment" that harms you. It's so painful to want to find solutions, be willing to work hard at feeling better, but then the professionals who are supposed to be guiding you through the difficulties are the ones who make everything much much worse.
@@Heterogeneity thank you 🥰🥰🥰
Im so sorry for you😢
I found out I was autistic six years ago when my oldest was diagnosed. I taught myself the look between the eyes instead of directly. It gives the illusion of eye contact without the add mental stress. My hubby got me a spinner ring to help with stemming and overwhelming situations. I made my autistic son a Viking style cuff to help him with his stemming at jr high.
Standing a bit farther away helps too. Then for can look generally at person, take in most of the body, without staring at any one part.
Trying to find a professional that even looks at autism in adults in my area is impossible. I still haven't found any. Don't they realize that children grow up? I am in the South though, so maybe that's part of the reason? Ones I've found online either don't do virtual sessions in my state, or are ridiculously expensive since they don't take insurance. 😢
Yep I paid about $2k out of pocket
Same story here in Ohio
The problem is that if you can successfully mask, or come close, you may not be able to be diagnosed as Autistic according to diagnostic criteria.
I can tell you exactly how I went undiagnosed because I had the skills of mimicry masking on an extremely efficient scale, probably the highest degree of masking almost to the point that it corroded my core self being able to blend in like a chameleon and camouflage is exhausting and doing it your whole life you eventually damage yourself don’t do it just be authentic. Don’t do what I did, I learn to lie to avoid to avoid detection of my stranger abnormal behaviors because I was afraid of being ostracized because I don’t feel like people will accept me. Are you stuck in perpetual circle?
I've been masking so long and so hard, I don't know who I even really am.
❤Next level ninja work! I masked so well, I was not diagnosed until age 58! It was such a huge relief that I feel like I have a new lease on life!
These videos are helping me out so much. Hard to not feel cheated in life now. Maybe we are the normies since we seem to notice everything lol
I'm undiagnosed because:
1) female (cis)
2) POC (black)
3) grew up poor
4) very smart
5) emotionally intelligent
6) I'm a laugh riot to many
It's funny, I dd know exactly ONE diagnosed autist growing up. He was my mom's friend's nephew & he's at least a decade younger than I. He was completely nonverbal for "too long" & was high support needs. No idea how he's doing now.
Same six reasons. Plus, I hit the markers "on time" as a baby/kid. But once I went to school, the bullying commenced. I thought back and it could've been because I was staring at people among other things. I have to prepare to interact with other people, like what am I going to say and not say so that I don't get in trouble. But alas, i have offended someone. My social relationships are trash. What do these people expect from me. Small talk is torture because what do i say. But that's normal so maybe I'm an imposter. I'm still not diagnosed because they quoted me a cost of $5400 and insurance doesn't cover it and because it could just be me exaggerating because depression, anxiety, misphonia, and PTSD make more sense.
I think it is important to say how autism *CAN* look. Because for some people, it does manifest more aggressively. My son is an example, my other son is probably undiagnosed autistic. Both struggle uniquely. Yes, people have seen extreme depictions, but it does exist and manifest in wildly different ways and degrees. 🙂
I went undiagnosed for 50 years because - I didn't know about autism, my family didn't know about autism, healthcare professionals may have known - but by the time I was seeking help I was disinclined to engage with them and there seemed to be simple pill-based treatments for mental health symptoms like depression and anxiety which made their ineffectiveness easy to ignore. Finally, to get diagnosed cost me thousands of pounds and, at 50+ and with no prospect of receiving any kind of support there seemed to be no strong reason to pay that money.
Female autism was not a thing when I was growing up and has only really been given weight since about 2020. So many adults are trying to get diagnosed that 1, doctors disbelieve and think you are faking for attention (seriously? Who does that?) 2, there aren't enough autism specialists (in UK) and 3, the lengthy diagnostic time.
I definitely think I was diagnosed late because of a lack of awareness, paired with that I'm not the stereotypical white young boy who loves trains or something like that. I was professionally diagnosed at the age of 21, and wholly because of my own initiative after learning about autism by pure chance. Getting a diagnosis was nerve wrecking as I deal with a fair bit of imposter syndrome.
I would say I am high masking, but even so. I flap my hands when I'm excited and have sensitive hearing among other things, if my parents had known anything about autism when I was growing up, I think I would've gotten a diagnosis much earlier in life. Growing up, I just internalized all the blame, impatience and irritation from those around me, thinking I was just a broken person where others seemed just fine.
My diagnosis was a relief for me, it was an answer for why I was struggling. But sadly there's very little if anything for support for late diagnosed autistics. After diagnosis, I was simply sent on my way, no clue as to what to do next. I think there should be way more awareness in schools especially, in an effort to find struggling kids early before they learn to mask by necessity. Masking is really tough to unlearn and can be quite damaging over years of holding yourself back from standing out. I've racked up a lot of trauma over the years due to bullying, no support and/or understanding and unhealthy reinforcement of my own masking behavior. I finally found a good psychologist, but that was an entirely different struggle on its own.
You mention you would absorb more of what the person says if you not looking at them. You still look at them else it looks rude. I have ADHD. If someone is giving a speech or presentation, I would absorb overwhelmingly more if I am fidgeting with something or doing a type of puzzle. I would still avoid those activities for the same reason. Though I am absorbing more, it looks rude.
Second! Third? Idk. Just happy to be here.
couple of weeks ago my son (20) came back from the drs with adhd tests to do and surprisingly, autism ones too. We both did the tests and I scored really high in all of them. So now I am working through what that might mean for me and what to do about it. I’m scared that a dr will just invalidate my concerns.
The not looking people in the eye thing, yeah I do that! But since I live in Florida I also wear really dark sunglasses, with side panels. Nobody knows I'm not looking. I figured that out when I was a kid and my folks would take us surfing, I wasn't as tired as the rest of the family when we got home, because I had NOT been masking all day like usual.
Oooh this is a great idea! I also like wearing sunglasses - especially ones that are reflective so no one can see my eyes - but didn’t think about how it also helps me to not be forced to make eye contact. Mostly was glad that I could look at other people or things around me for as long as I wanted without any judgments 🤣
I was originally diagnosed with ADHD at 8 years old...as I got older, it was clear there was some other psychological stuff going on...I've been diagnosed and medicated for so many disorders...OCD, Pure O OCD, Depression, Bipolar I, Bipolar II, anxiety,...the list goes on. Every time people have tried to medicate me, things usually end up much much worse. I fell down a rabbit hole about Autism about a year ago when I read that some of us have "people" as a special interest, and that resonated with me in a deep way so I started researching. I'm convinced I'm on the spectrum as are my two daughters. Unfortunately, it's challenging to find people who can do an assessment and make a diagnosis for less than 3k and a 2 year wait :( :( :(
*Edited to add: I do definitely have ADHD...but I never understood why I am always in conflict about having a routine and needing to break out of one. I thrive in routine, and I can thrive in change if I am initiating the change, but if I don't initiate change, whew, look out.
I like your videos. Your content resonates with me in a way that other folks content about ASD has not. I think it was your disclosure of you "buddies" that got me. I have a large, stuffed Tiger that I got when I was 11 (I'm 36 now), he was my imaginary friend back then and still is. I can have full conversations with him in my head....but this makes me feel silly, so I gave the tiger to my puppy (his name is Chase (the tiger, not the puppy). So I started thinking about what other "buddies" I have, and I realized I've been naming cars and motorcycles since I was very young. They all have personalities , too.
Diagnosed at 68 years old. I also have multi-sensory aphantasia, severely deficient autobiographical memory (SDAM), CPTSD and a long list of other neurological 'wonky wiring'
How was I not diagnosed earlier? As a child, autism wasn't 'a thing' If I didn't look my mother in the eye, I was belted. If I stimmed (as I now know what I was doing) I was belted. So I learned to disappear, to be still and to always look people in the eye regardless of how uncomfortable I was. I learned to swallow my pain and discomfort. I am a world master at masking.
Learning - and accepting - that I am autistic has been such a relief. So many things in my life started to become clear as I learned to understand myself. I made a decision to not hide this diagnosis, to be up-front about my differences. They are part of who I am.
I was pretty good at masking until perimenopause and uninjury that disabled me physically. Then all my regulation both physically and mentally was taken away. And lo... the neurodoversity became apparent to the world.
One thing that goes along with the lack of awareness/understanding of autism is the fact that if we're getting by, there's no one really pushing for a diagnosis or more exploration. Even after I had taken a self-test that showed me "mildly" on spectrum (I don't have diagnoses but as I dig deeper I suspect I have an ADHD component as well which I feel kept me from testing as high as I might without it), I largely found that mildly interesting. I didn't really start exploring until my son was diagnosed with autism related to a speech delay and it was no mystery which side of the family that came from. Of course once I started exploring the autistic experience, more and more parallels became obvious.
I was diagnosed at 37 after self referral to autism research centre Southampton in England. I a, female and had five kids. I masked for years successfully until I lost a daughter at 2 years old in a drowning accident and they didn’t understand what they thought was an inability to react. In uk, it’s not great. All my kids are autistic but only three have a diagnosis out of the five remaining. You learn to mask in the eighties where it was that or be beaten up? I never quite realised that my constant falling asleep at bus stops on way home from school and college was because I was so tired from masking . Also rainman has a lot to answer for.
I was about to ask "how important is it really, to get diagnosed if you're a decently-functioning adult" but everything you're saying here fits me to a T. On facebook I came across a couple of elementary school classmates I had (back in the 70s). They posted some pictures of birthday parties. I wasn't in any of them. I don't remember even knowing those parties were taking place. This was the first time I really wondered if I was autistic even though I know I was extremely shy into adulthood and had problems with depression and anxiety and social interaction. Seeing my old classmates smiling in those party pictures and realizing I wasn't a part of any of that hit me a little hard. We were just little kids.
Self diagnosed with A LOT of online tests aged 46. Why I went undiagnosed, exactly your #1 reason: awareness. Autism = Rain Man (that was about all I knew about autism) and I was never like that.
Same thing with ADHD. I've had a couple class mates that were so obviously ADHD'ers, very hyper to say the least.... but a lot of people with ADHD are not hyper at all, at least not from the outside. Again, I could never have that. But when I take a test to see if I have it, there you go.
I always felt different from everybody else around me and I was always told "everyone's unique", basically dismissing me completely. Instead of searching what was wrong, instead I was encouraged to just learn to deal with life and all the hurdles it throws at us ND people.
I was growing up in the 70's and 80's, there just really wasn't much awareness. Looking back it's pretty freaking obvious, but there just wasn't the langauge at the time.
Idk if I commented on another video about this but…
I diagnosed myself with adhd at 19 years old. Was officially diagnosed at 20.
A year goes by and I thought I had my adhd control, I had a miracle healing from God who healed me from anxiety but… there was still something there that I really haven’t figured out.
Like there was something missing.
Then at one doctor appointment I was saying something to my dr and he then said “that seems pretty autistic… you might have it but we don’t have to diagnose you cause it’s so mild.”
(Paraphrasing what I got out)
When I heard this It shocked me.
Even if he said maybe, it’s pretty clear now to why I do things the way I do.
I get home and do my research (hence going to ur channel) and the more I indulged myself of the topic, the more I am open to it.
I heard self diagnosis is valid which is nice because I don’t think my doctor would let me in his opinion. Like he would but he wouldn’t recommend it.
He said when we have the best exercise, eating , and sleeping that that’s all that matters, Is you taking care of yourself.
So yah that’s my story…
Oh also my mom doesn’t believe me which makes me sad.
I am 42. I recently realized I am autistic and have ADHD. I have to mask at home and in public. It is fucking exhausting. You would think being exhausted literally all the fucking time would make it easier to sleep, think again. The anxiety and stomach issues is crippling at times.
This is so true. I’m constantly exhausted from the world and also the pull of being autistic and having ADHD (the internal battles that happen are so real and so exhausting) - but then i still can’t get good sleep. I completely get this - it’s so draining and frustrating too. And don’t get me started on the stomach issues 😆 just watch a few videos and it comes up often because it’s ALWAYS there 😬
Wondering what benefits or help can one get to be diagonosed?
Another reason, similar to your last one, is Autism not being recognize by other Autistic people, like our parents, who may also be Autistic or have siblings and/or parents who are Autistic, so they just see it as normal.
Yes, so true! Thanks for sharing that. Also recently heard that it might be more common for people who might not be autistic but grew up with autistic family to have a large number of friends who are autistic/neurodivergent because they also see it as normal and familiar without even realizing it. Really interesting all the new info coming out all the time 😊
I was raised religious, I believed that masking was just me choosing to be a good person. I thought god hated me. My parents were undiagnosed and were so hard on themselves and me. Everything I said I was going through they said was “normal” but of course they would say that because they were undiagnosed autistic! I was told I was too sensitive, too stubborn, too fidgety, etc. I was one of those 90’s gifted kids and I often thought my differences were because I was just smart. We also moved a lot so I was always the new kid and my differences were usually explained away by me not being from “around here”. I’m almost 40 now and self diagnosed about 6 months ago. I’m so grateful for videos like this that have helped me find the language I never knew I needed to express my world and how I perceive it.
Huge relate! Glad you have the language now, what a relief. I just turned 40 yesterday and wanted to wish you happy early bday. 🥳
I learned how to be normal out of survival
I was recently diagnosed as autistic…Im 67…also dyslexic…let’s just say it’s been special. The journey has been lonely and brutal and I have had to find my own way in this world. After street fights, alcohol, drugs I have come to a peaceful place of understanding. The world will never know or understand me but the universe has always loved me and held me dear. Im also the Chief engineer at a rather large aerospace and engineering company and Im flourishing in ways in never knew. I built a bridge back to the world that had forsaken me. I’ll build the rockets and pay there taxes but under no circumstances will I ever put up with there bullshit. In peace and love..Malcolm
@malcolm I loved what you said there- ‘The world will never know or understand me but the universe has always loved me and held me dear’ - that is a truth which brings me peace, too. You’ve done well in your career. I had the potential but didn’t find a niche where I could excel, so have always settled for less, the ‘comfortable option’ as far as my social skills are concerned. I still feel I’ve done remarkably well considering. Now I’m older, I feel more comfortable and secure about honouring what others may perceive as my ‘quirks’, instead of giving myself a hard time, trying to mask and be like them. I’m similar age to you and undiagnosed, still working but entirely from home now for the good of my mental health. I have a very small social circle of people who ‘get’ me, plus my grownup children, and life feels mostly very good. Best wishes to you.
As a late-diagnosed AuDHD (High-Functioning Autism and ADHD) woman with many chronic invisible medical conditions (one genetic, others are fallout from the undiagnosed ASD stress factors), I totally empathise with everything you say here.
I was diagnosed as 'hyperactive' (the old money word for ADHD) when I was young with a High IQ long before my formal diagnosis of Aspergers/High Functioning Autism at the age of 49 years. Autism was not even mentioned until much later. In the meantime, it did not help that my family members were physically and/or mentally ill, which caused lots of upset, abuse, bullying, etc., where there were few people to confide in. I didn't realise I was masking until I was teased and made fun of. The figurative elastic on that mask would wear out. Then, when my love for Japanese Kabuki Theatre was kindled, a swap occurred between the figurative mask and elastic going off and the kumadori makeup that Kabuki actors apply for each character and play that won't fall off under figurative hot lights.
This continued right up to fighting for a diagnosis of Autism, but the figurative kumadori continues.
Yes, paying bills is a pain for the same reasons you state, and how you handle them is how I handle them, too. It helps lessen the stress, anxiety, meltdowns, needless drama, and shutdowns they and every situation in the NT world give me.
Autism can be a crown of thorns or a crown of lilies for many varied reasons and situations.
annnd this reminded me to add auto pay to my Gas utility. THanks bro
You are completely correct. I internalized completely as much as possible. I had two big explosive meltdowns when I was forced to be in scenarios where I couldn't control the amount of people I had to deal with, but other than that, I hid well.
I have also realised I grew up with a parent who is autistic. This person still doesn't know it.
100% Absolutely true! Love this video. I also was self employed, couldn't keep a job. I'm now 68 and retired, but it was a real struggle to get here. I believe is was because of the stereotype and lack of understanding that made this happen. I am currently seeking a diagnosis. The last time I tried the doctor said I was too social. I'm an AUDHDer ADHD is great at masking my lack of desire to be social. I was hight masking and did well going under the radar. Thank you for sharing your experiences! They make a huge difference to paving a path to understanding.
When I was told about my autistic traits, I wanted to prove them wrong. So, I did some research... well, a lot of research and that's how I found out what a special interest is, and I learned something fundamentally new about myself. It only took me 50+ years to find out... sigh...
This is by far the best ,most succinct video of MY autism, i am turning 74 soon, and self diagnosed- both siblings on spectrum, as well as my deceased father, who was extremely low functioning but held down a job. My pa was born in 1912, my sibs and i in early 1950, so absolutely no recognition of our disorder existed and we had no choice but to mask, mask mask- i am depleted of energy - i am ok now just tired of the neurotypicals and their complaints.............
I figured out I'm autistic at 71, 3 years ago. Someone I admired mentioned she'd been diagnosed as neurodivergent. As a word nerd, of course I looked it up. I was gobsmacked. It all made so much sense.
I grew up before autism was well known, even to doctors. My parents had no idea how to deal with their youngest kid who was too scattered, too noisy, sensitive, picky, unmanageable. I was smart but didn't 'apply myself'. I didn't make friends or eye contact (look me in they eye when I talk to you!) So by my teens I had learned to hide my feelings at school, and from my parents at home. I always had one or two good friends, but groups made me uneasy. I joined stuff just to seem normal, and to gain the acceptance and friendship I craved.
In my 20's I rebelled as a hippie and free spirit. Grass made me too introspective, but alcohol made me forget. Fortunately I had the will to finish college though it took me 9 years and 4 schools on 2 coasts.
And I got sober, came out and fell in love with a woman who I now see was neurodivergent as well. But after 19 years our differing ND traits had rubbed both of us raw and we parted.
Now I'm retired and spend most of my time alone. I live in a small city and it's hard finding other older autists.
Overlapping conditions for me it’s my hypermobility. I rock and sway my body all the time but now I don’t know if it’s because of the hypermobility or the autism. But surprise, it’s one of those conditions that are highly related to the other.
You're too shy shy, hush-hush, eye to eye..
Thanks to you, I now have a blue Nee Doh cube. Can’t keep my hands off it. I’m 62, and I am scheduled to be assessed for Autism on July 1st. Been fighting anxiety and depression my whole life.
I’m glad you’re enjoying it as much as I did when I first got my very first Nee Doh. It also helps me with my anxiety and depression - even when I’m at work, or the hair salon, or appointments, it helps a lot to keep me calm.
Good luck with your assessment - if you want to plan ahead, jot some notes ahead of time to help you feel less anxious as the day approaches 😊
5 decades of going undiagnosed here.
Just a whole awareness thing - and if you are an adult who doesn't have a child, who then gets diagnosed - then chances are, unless you happen on someone who "knows", then you'll never get diagnosed at all ...
That said, it really is awesome that more people get diagnosed now - and younger - but also older - because it explains so much of what's going on for people - and, even more, it actually means that we end up with role models in the places we want to see them - and, no longer is it hidden away because some people think that "an autistic person can't do X, Y or Z" like it was when I was younger.
I haven't been diagnosed, but I clearly had problems as a kid. However, when I was a kid, autism was considered super rare and only occurred in males. Instead, I was diagnosed with hyperactivity because of my emotional and sensory sensitivities and my meltdowns. However, I don't even think that is right.
BTW, I am glad someone has mentioned the extreme anxiety autistic people get. I had no idea that it could be related to autism. I mostly thought that I was crazy because I knew of no other people who suffered from the anxiety over little things like I had. Right now, my life is pretty stable and my anxiety is way less. Having less anxiety allows me to step outside my comfort zone and do new things now and then.
I understand the masking, putting on a good face for work. Then I come home and want me time. It's been hard in relationships as boyfriends don't understand I want to be on my own. My IQ is high it was tested when I was 16. I haven't been dx but I see traits in myself and my daughter
That was an excellent list. I think that mine went unnoticed in part because most of my family is actually autistic as well so to them I seemed fairly normal. Now that I am very educated on autism I can pick out all of my wonderful autistic relatives and on my maternal side that is almost everyone. Also..I am 49. I grew up in the 80s. They were not diagnosing anyone with anything back then.
im so happy that i can listen to you without background music. (there are still distracting sound effects). now i would like to see you, but i have to turn the screen away from my autistic eyes. so many camera changes and inserts and dreaded stock photos. please inform your editor.
Females are usually diagnosed as anxiety, depression, or Borderline Personality Disorder since "girls can't have autism". I wasn't diagnosed until I was 50 years old.
Our generation got screwed because medical professionals didn’t know enough. I was misdiagnosed with everything but autism. Took me 41 years to get the correct diagnosis.
Things are changing. Now many more autistics are being diagnosed- including girls.
I'm late 50s. Autism and ADHD make the most sense of my life to me now. I'm not feeling hopeful about the process as I seek help and assessment for Autism and ADHD. The process is not inclusive of neurodivergence and not nuanced from the get-go, nor do the tools and knowledge appear up-to-date. I don't have funds to see specialists, so shall see where this path leads. But I now dread the process after the "intake" and am questioning whether I should continue. It's far from harmless and I feel like I'm asking for scrutiny when I should be protecting myself. At least I know from this video and comments that I'm not alone in this experience.
I know I’m autistic but I don’t even know how to bring it up, I can’t find the words to explain how I truly feel inside.
I got diagnosed last Oct at age 50. I was always the class or workplace clown who always worked out an efficient way to do things. If it got changed I would struggle but ultimately adapt. I hated - I mean HATED that social game so I avoided outings as much as possible. I can now point to the multiple meltdowns over the years and go 'ohhhhhhhhhh'.
I was undiagnosed cause I played the game well but was also labelled 'anti social' and/or 'introvert'.
One extra reason: I am a woman
I’m self-diagnosed. I got teased, bullied, and even punished for what I now know are symptoms of my autism (stimming, melt-downs, hyper-focusing on subjects). My parents had me tested for autism when I was a child, but back then, it was assumed that ALL autistic people were mute, so I “couldn’t possibly be autistic.” I’m actually hyperlexic, and learned to read when I was 2-3, so I was “too smart” to be autistic. I’ve been tested a few times since. The last time, I was told, “Your score is right on the borderline. You’re probably autistic, but I don’t want to ruin your life with that diagnosis….” Meanwhile, I’m here like, “RUIN ME? I’m already ruined! I can’t function in society and can’t get the help I need UNLESS I get this diagnosis!” Nope.
I'm 64, and I've known in autistic for only one month. I got this far by extremely good masking - and lots of solitary suffering.
Great and informative podcast, friend. I'm 47 and getting tested for Autism soon. It's very freeing though, to realize there are REASONS for my bizarre behaviors..
43yo F here … and when I recently sought diagnosis, after only a half’hour interview (and without reviewing my 3 questionnaires - which turned out to all state YEP) she told me “You’re definitely neurodivergent. You just don’t meet the current criteria according to the DSM-5 … and a bunch of old white males.”
Will be seeking a second opinion soon - especially regarding the questionnaires they had me fill out.
I've sought a diagnosis for ADHD and was told that "these symptoms only occur when you're in a deep bout of depression or anxiety, and you're very intelligent" as the reason I wasn't diagnosed and honestly that really turned me off from getting any further professional help with my struggles. Now I'm wondering if I'm also autistic but I mask it well. Your videos have really resonated with me and made me rethink a lot of my own experiences.
I'm 33, btw, so this would definitely be a case of someone flying under the radar for a long period of time, but I've reached a point in my life where everything seems like a struggle. Most days I find it hard to make it into work or even shower and I don't know why.
I also have (teenage mutant) ninja skills, and high intelligence.
As a little child I was seen as quiet and shy, then when I went to school, they added on "not very bright" but it was the 50s so few people knew about autism. I talked very little, only to my Mum really and in whispers but at 8 with a good teacher, I learned to read and write and began to talk.
As I got older, I got increasingly anxious but couldn't identify my emotions properly (still can't)so I only really felt sad or afraid. I was easily manipulated and suffered trauma from abuse but it was "normal" to me and I began to feel increasingly different and unable to cope. I had my first "nervous breakdown" in my teens.
The rest of my life until I was 67 was me being a weird failure, dependent upon antidepressants and sick to death of it all.
Now I know that I'm a high masking autistic with ADHD I'm not high functioning but many people would give me that label because they saw me doing what I could do, not struggling with what I couldn't do because of the mask that I didn't even recognise myself. It was second nature to me to try to fit in, to not show my "weaknesses" and vulnerability, to please people and hide my discomfort.
In the past 5 years I've been able to ease bits of my mask away but honestly, people don't like it......only my very nearest and dearest understand and let me be myself. I'm kind and caring still but a little more confident and frank......it's perceived as rudeness, smugness or being awkward and argumentative.
I care about that and it hurts.
I'm just beginning trauma therapy for my CPTSD and hoping it will help but I'm often bitter because of how I've been treated. The manipulation by people I trusted and the gaslighting by medical professionals have left me a physical wreck.
Most importantly of all, I just want children today to get early diagnosis and proper support but not therapy that makes them act like a neurotypical 😢
I also don’t pay bills. My husband takes care of this. I used to but it got to overwhelming for me.
The older I get the more difficult it is for me to keep masking. I just don’t have the energy to keep up with it.
I am currently working part time, cleaning offices after they are closed and no one is there.
I've never truly felt normal or like anything makes sense until I've started looking into this, I honestly had no idea Sheldon Cooper was a depiction of the spectrum but he was always a very relative character for me, tiny things like that compounding together makes me see it all like a spotlight shining on it
I was tested last year. I’m 45 and my results came back as negative. I’m pretty sure I have it. Just really good at masking.
I also live in my own world, not realizing how much time goes by without speaking to friends and family. However, i check the time ALOT. No jokes. I don't like a wristwatch bc it's just too uncomfortable. But i have a clock in every room. Even the toilet and the bathroom 😂🎉 and also outside. i really need to know the time. And check every few minutes. It's like breathing.
I can tell you right off, before even watching the video (which I did), that many of us simply cannot afford diagnosis or do not have access to properly trained professionals who can truly diagnose autism without bias or prejudice, or getting too "by the book" to see the real autism and not just academia. I totally hear ya, Chris, when you say you saw a dozen medical "professionals" before getting your correct diagnosis. I've heard this happens to many of us autistics, and I can attest that some can be outright harmful. The last clinician I saw, when I was at an absolute breaking point, so utterly stressed I was sobbing and falling apart in her office, on the verge of a nervous breakdown, and she sat there YELLING at me -- in front of my husband! -- and accusing *me* of this that and the other, making it all "my" fault when it had nothing to do with me. Only later did I realize she was clearly narcissistic, possibly psychopathic. The way she twisted everything I said was classic narcissism/psychopathy, which I grew up with as both my parents were narcissists. I've found that a lot of narcissists become mental health professionals specifically because it gives them a steady stream of victims to abuse: patients willingly come to their offices. (Similar to how many child abusers become priests, etc.) Being autistic is a very difficult road.
Ok so here’s the thing…”invisible”: you’ve GOT TO THINK CRITICALLY! WHO IS TRYING TO PUSH YOU DOWN?? WHO is gaining from this?? If it’s JUST YOU? Good. Not? No. Get away.
It's also really expensive to get a diagnosis over here. So I haven't bothered.
Are auditory processing issues universal among autistic people? I ask because I notice a great deal about your experience that aligns very closely with my own, but I have NO issues with sounds. At all. In fact, most of my hobbies are inherently loud, chaotic, and at least a bit social.
Wow. This was one of the best videos on informing me for my hi masking sister. Her daughter.
Glad it was helpful! ☺️☺️