What normal people don't realize is that some kids don't get diagnosed because nobody gave a shit. Parents, teachers, guidance counselors, principals, take the path of least resistance. Instead of trying to figure out what's going on...
In my case I went to preschool in the late 70s. They noticed that I had problems socializing and I was delayed going to kindergarten. But I wasn't severe enough to meet the definition of autism at that time and I was female. I broke down mentally when I was 14. Then I was put into the mental health system. All my behaviors were seen through a mental health lens. A counselor thought I had autism in my 30s (2007). I was evaluated for autism and for my complex mental health issues. The psychologist said that I may have had autism as a child but I did not as an adult. 😮. I was diagnosed with ADHD. I read 3 books on autism and didn't think I had it because of having too many special interests, having empathy, not liking routines etc. So I didn't worry about autism until a couple years ago when my case manager who used to do autism assessments pushed me to be tested. I got diagnosed with level 2 autism at age 47. The level 2 shocked me. I wasn't even sure that I would qualify at all. I guess I was just being seen as mentally ill. But mental illness wasn't the whole issue.
You hit upon probably the biggest reason why children are not diagnosed - because they are not perceived as "trouble". This is most obviously the case for children who engage in bad behaviour at home, school or in their neighbourhood. Children who are also "troubled" are much more likely to be diagnosed, e.g. those who are bullied, are clearly deeply unhappy, failing at school or refusing to go to school. By contrast the child who is quiet, well-behaved and getting average or good results tends to get overlooked even when they exhibit many autistic traits. Families are also like bubbles and parents and silbings often get used to very unusual and sometimes difficult behaviour from a child. If parents or siblings have elements of autism themselves they may find it hard to recognise in their child, e.g. because the parents aren't very social they don't see it as problematic if their child has little or no social contact. The "bubble" analogy also can apply to schools where some autistic children who are seen as "odd" rather than troublesome are more or less accepted by teachers and other pupils. The same can also happen into adulthood and helps explain why some seemingly obvious autists are either diagnosed late or not at all.
I was diagnosed last year, at 29. I guess my issues weren't noticable enough or my parents weren't able to see it. My mom was alone with four kids while working and having her own issues. My oldest sister had a lot of issues and I suspect her to be autistic as well. We don't talk anymore, so idk. But she would be very difficult to deal with, so I would be surprised if the rest of us were overlooked. I was extremely shy as a kid, especially with strangers around or in group settings. Still am actually. Our former neighbor mentioned how I would stand back and watch other kids and people for a while before engaging with them. I used to play alone very often. And when other kids were involved, I had a hard time playing with them when it came to imaginary play. And I really wanted to belong. I would mask how wrong it felt in the moment and try to pretend to view the game as they did. Apparently I hated having sand stuck to my fingers and would scream until my mother had cleaned them. I don't think I was a stereotypically autistic child, but there were signs. I guess the public wasn't as aware of issues like autism in the 90s and early 2000s. I mean, look at how autism is viewed and discussed today. An early diagnosis would have been extremely beneficial for me and my family. I have struggled my whole life and no one knew why. All the time spent blaming myself for not being normal or easy going or fun or capable or whatever was a complete waste. I am still coming to terms with the diagnosis, but it has helped me a lot. I have more compassion towards myself and it's nice to know that I'm not a complete failure of a human being. I just had to understand that I'm not my mask and the years of trauma. There's someone valuable underneath all of that. I recently watched a video of someone mentioning how the self hatred we feel is part of our mask. It's not really us hating ourselves, it's what we were told by others and society. And boy do I relate to this statement. Because I don't really hate myself. It's just the anger I feel about not being what society wants me to be. And the anger I feel because I can't keep up with the mask all these years have created. I think it's quite an interesting concept.
I’ve lived a similar experience but from the other side. I’m male and maybe autistic and my mother was very forgiving with me, but my sister always got scolded for everything she did, even if she did the same as me. I don’t know if it was because of her personality, being too emotional, or just not being a boy, but I never understood my mother’s double standard. However I’ve always been there to support her. I love my sister so much, and I always tried to offer emotional support in the ways I knew how, because I had no idea what to say when she cried, and she cried a lot, but I used to stand there by her side without saying a word, just being there. She always thanked me for those moments. I find it sad that most relationships between siblings are not like this, but bitter and toxic. Recently I encouraged my sister to seek an ADHD diagnosis, and it was very hard for me to convince my mother, because if we both showed the same trait she seemed to think that it was moral fault in my sister where it was a forgivable condition in me.
Glad you're deleting the naysayers ❤ This is the question that every late diagnosed labours over - thanks for sharing your experience. Highly relate to the undiagnosed 'weird' family that move around a lot 🌈 ❤️
Same here. In the 80s girls and even boys who could sort of function weren't diagnosed. They were only diagnosing people with higher support needs then. I just got diagnosed this year (2023) at age 47. And I was diagnosed with so many other things before this (a couple were correct but most were not).
@@thethegreenmachine Lots of my diagnoses were removed by later psychiatrists. Other diagnoses I think are correct because the medicine works. I ask the professionals why they think I have an illness. I learn a lot about an illness to see if it fits. I watch videos about the illnesses and read about them.
I’m a 46 year old woman and my autism wasn’t diagnosed until four years ago. I had a terrible time at school. My difficulty socialising was put down to extreme shyness. I couldn’t do a lot of my schoolwork because of my problems with organisation, planning, and problem solving. There were some things I was really good at, like reading and remembering factual information. My teachers didn’t understand the discrepancy between what I could do and what I couldn’t. When I couldn’t do things, they assumed I was just being lazy or not listening properly. Luckily I had a very understanding mum. Although it didn’t occur to her that my problems might be due to a medically diagnosable condition, she knew that they were real and I wasn’t making them up to get attention. I have a hypersensitivity to touch as well, and my mum never bought me clothes without letting me try them on first. She knew that school was too much for me, and she always let me take time off when I needed it. (I went to school in the years before parents were fined when their children missed school). My attendance was terrible, but I struggled to learn in the classroom environment. Being away from school gave me the chance to learn from my mum the things I couldn’t learn when I was there. It was watching a documentary a few years ago that made me realise I was autistic. It hadn’t occurred to me before then. I think part of the problem is how autistic people are portrayed in the media. Autistic characters in TV dramas are either very high functioning, (the socially awkward genius), or very low functioning, (the child who can’t communicate well and throws tantrums a lot). These are both valid representations of autism, but it makes people think that all autistic people fit into one of these extremes. When in reality, a lot of autistic people can be high functioning in some ways and low functioning in others. I don’t think things are quite as bad now as they used to be, but autism is still very much misunderstood by a large proportion of society.
Can empathise with you. I was born in the late eighties and the paediatricians just thought I was a "late bloomer". Had a ton of very big developmental delays but they never got followed up due to ignorance and utter incompetence because I was a happy and friendly infant. Was easy to raise since I felt compelled to generally follow rules. Started realising I was different when I was 11 and learned to mask. Took me until I was 29 to get diagnosed and the specialist pointed out that my autism was bloody obvious when I was a toddler given everything my dad wrote in the early development questionnaire (developmental delays, echolalia, sensory problems etc). Was such a relief, and I could finally stop punishing myself for being different and having difficulties that people just said were in my mind. It has been all too easy to miss getting diagnosed. Thankfully that is changing, but we have a long way to go and particularly for girls.
Being compelled to follow rules really stands out for me, because I very much did when they made sense, and suddenly became a problem if they didn’t. Being told it’s all just in my head too, if it had been I wouldn’t have spent years trying my absolute best and getting nowhere! With you on being thankful that things are changing, and thanks for commenting!
I got my autism diagnosis last year at the age of 47. I think autism has only really been studied and understood the last 20 years or so. Before that I think you were only considered autistic if you were the stereotype, Rainman for example. I was the quiet kid, didn't talk much and was a slow learner. I was always along with half a dozen other similar kids being separated from the rest of the class and being sent to remedial classes for extra English or Maths. Nowadays I think we would all have been diagnosed with ASD in early childhood but I went to school back in the 1980s(1979 to 1992 in my case). My schools just thought I was dyslexic instead.
Also. I am sorry that you had such an experience in childhood. I know it is not easy growing up with parents who do that. Emotional neglect, screaming and all these things are no joke. I hope you have managed to reconnect with your emotions in the mean time. They are an important part of who we are.
Well, I think the definition of Autism has changed. I grew up in the 1970's. Despite my frequent meltdowns, I was viewed as "normal." Like you said, girls did not have autism... and that was part of the definition at the time.
I think for me a combination of two things. like you being able to self-contain or isolate myself and read a book away from everyone when things were overstimulating. Also my parents being very uneducated on mental health or various possible condintions and likely being undiagnosed themselves (definitely my mum with ADHD) making our very odd behaviour seem kinda normal. So many times I remember being baffled as a kid how easily my aunty could sort out an argument or problem me and my mum would talk past eachother over. Or I visit a friends house and experience an unsettling level of calm and an eerily managed environment in the home.
It always weirded me out when I went to friends houses and their parents would ask what foods I didn’t like and cook around that, rather than just trying to force me to enjoy food I don’t like 😅 Sooooo many others, but that one stuck with me
I’m lucky because i got diagnosed when i was 4. the headteacher of my primary school noticed autism in me and told my mum and got me diagnosed straight away. very grateful. my younger brother was also diagnosed with learning disabilities too. Ever since I’ve got older, I’ve noticed signs of autism in my parents especially my dad (rip him) but he had so much special interests and my mum also has sensory issues and hates change and gets stressed out in situations too.
Thank you for this video Dana, I'm late diagnosed, and I think there are two main reasons why I wasn't diagnosed as a child in the 70-80'ties, one thing is that I don't think there was as much knowledge about it in the school system as we have today, but also that every time my "alternative" side was bought up in school meetings, it was brushed off by my parents, as - oh.. he is just like his father... nothing to worry about. My mother was very firm, that her child (me) didn't have a problem, to the point where she went against the schools recommendations and rejected to have me examined by a psychologist when I couldn't cope in school.
Ooft, that hit hard. I'm in the process of getting diagnosed in my mid-twenties. I was definitely similarly raised in a likely heavily undiagnosed family, and was relatively easy to handle. I find it kinda wild that I wasn't diagnosed as a little kid. I had frequent, major meltdowns; I had social issues from a very young age; I had a lisp and eventually got speech therapy; I was literally a little boy obsessed with categorising vehicles. But then, it really wouldn't surprise me if both my parents were undiagnosed autistic, it runs in both their families. I think they as kids were probably not that unlike me. It doesn't at all surprise me that nobody noticed I could be autistic when I was a little older, 6-12 or so. There were just obvious other reasons for me to be having problems for a long time - my mother had major health problems leading to a pretty neglected few years, and then just as she was getting better we moved countries twice, and by the time things had settled down again I was starting to have pretty solid masking strategies. Its only in the last year or so, struggling with really deep burnout and unable to figure out why, that I've finally worked out I'm almost certainly autistic. And it feels so good to realise that my constant sense of not belonging isn't just a really different childhood and background to everyone around me, but that its a pretty universal experience for autistic people. My passport says 'Australian', and growing up overseas I think that part of me must have thought that the nature of being a foreigner must be part of why I just didn't fit in. When I moved back for uni and nothing changed, I gave up on feeling like I belonged. Which I think I raise to say how much the sense of belonging I feel in a video like this means to me.
Damn i felt his one. Not because of an autism diagnosis but because of the things that were overlooked as a child because the parents wellbeing came first. It's painful but it does need to be processed. Thanks Dana.
I'm a late diagnosed dyspraxic genXer. I actually attribute my late diagnosis entirely to having narcissistic self absorbed parents who didn't want to be inconvenienced by my special needs. So many of my teachers and other school officials tried to communicate with them that I had some particular special needs but they just didn't want to be bothered to investigate things further and work with the school officials in terms of getting me the proper help and support I needed. Ignorance is no excuse. Developmental Coordination Disorder has been in the DSM series since the early 1980s. Likewise with so many other neurodivergences that on some level have been clinically known for decades. I would say that at least since the 70s there has been enough written about specific learning difficulties and developmental differences that any parent who is willing to do their due diligence could do some research and develop enough of an understanding as to their child's special needs, even without some of the more recent diagnostic categories that have been recognized. In my opinion parental ignorance has ceased to be a valid excuse for some time, in terms of getting special needs children the support that's needed early in life.
I had an ex who was diagnosed autistic in childhood and their mum quite often spoke about how it was a battle to be listened to regarding it, so though I agree, I’d add that parents need to be prepared and have the time and resources to research and reach out to the right people, so those of us with parents who actively didn’t care just didn’t have a chance really
@@DanaAndersen Exactly. And I think that economic policies that promote better work life balance can go some way towards creating a society in which parents are better able to meet parental duties like being the best advocate that they can for their children, particularly those with special needs. But in cases where the parents simply don't care, to deal with their child's special needs, it's child abuse plain and simple. And I honestly think it should legally qualify as such.
My experience of growing up was one where my family knew I was autistic but they had incredibly high expectations for me to act normal and do better then everyone around me academically. Being autistic was treated as my secret shame that I had to do everything to overcome which is why I think now I have very high rejection sensitivity disphoria.
I think the bit about parents just thinking you’re a difficult child or trying to get attention is one of the harder parts of a late diagnosis - why couldn’t they have had more compassion EVEN IF I wasn’t autistic?? My parents are much more supportive now but it still hurts that without a diagnosis, they would still see me as bad, defiant, unable to grow up, too clumsy, etc.
I sometimes find it baffling I wasn't diagnosed as a child. They definitely knew something was wrong.. I was placed in special ed classes nearly immediately like at start of first grade. They also diagnosed me with a "language learning disorder".. like honestly I find it very strange they didn't see what to me looking back was extremely obvious. Entire early childhood I was just the odd kid and never had many friends and just had tons of odd behaviors. Chewing my clothes, weird fidgeting habits during class, lots of leg bouncing and sleep loss, was bullied a lot. My theory on it is they just thought "we have enough of a diagnosis to get them into the special ed classes to get them help, we don't need to look deeper." The special ed classes definitely helped but as I got older they helped less and less and also my external academic performance massively improved in HS despite calling out sick a TON. Like there was a limit for how many days you can call out and I went way over it every year. I wasn't "really" sick but now looking back its obvious to me that I was burnt out and needed rest, but I was able to make up the work and get good grades in massive bursts of focus where I would learn weeks of content in a single night. So they just didn't bother to worry about it and let me do my thing. But I was masking very heavily and also my sleep became very dysregulated at this time. And then after leaving HS I entered uni and again was able to do unorthodox coping strategies. Most my classes didn't take attendance so I just never went, did the hw and did massive cram sessions. And again my sleep was very fooked during this time and I also developed a caffeine addiction. But I managed to graduate and even had 3 internships so people told me I was doing great and had nothing to worry about. But even towards the end the toll was building up, my last internship didn't go that well, a bunch of my math classes I got poor grades in because my cram strategy stopped working. After I left school is when shit really hit the fan, took more than a year off after graduating, got a weed addiction.. and the next 8 years of my life were work a year or two at a tech company and then burn out and have massive meltdowns in a very traumatic way and quit. Absolutely the worst years of my life. Now looking back the pattern is very obviously autism. But because I was able to find strategies to succeed academically no one cared or thought my issues were important. Who knows how things would have gone if I had had a proper diagnosis early on. The fact that a dr did look at me and gave me a "language learning disorder" diagnosis kinda makes me mad because it was so extremely close to what was actually wrong but still missed the mark.. Now I have a proper diagnosis.. who knows how it will help but atleast I know now and can try to actually accommodate and unmask.
Good you sre deleting the comments. I wouldn't want to deal them either. I was quite lucky to be diagnosed with Aspergers at age 8 and have the support systems in place from an early period. But having a Mother who was a teacher who worked with children with special needs was part of the reason I was diagnosed early most likely. I'm also a man so it tends to present more clearly and theres the stereotype. I also tend to be OK at masking and I had friends at school but it was still bullied but thankfully that stopped before secondary. Still had "excited hands" at things which I obsessed over when I was younger though. I still get that feeling when watching the Formula 1 or motor racing when my favourite driver is doing well or theres a particularly exciting moment and my body goes into overdrive trying to cool down while Im on the edge of my seat but the hands stay still now.
"You were always quirky and different but I didnt think it mattered," (c) mum She still casually mentions some of the things she noticed about when I was little that are very obviously autistic traits (like never making eye contact and hating changes), she is still very aware of how it made me different from other children And still somehow thinks it's normal? She's basically like "yea, I always knew you werent normal. I thought it was normal." And I can't understand her thought process here for the live of me The closest I got to a feasible explanation was that she didn't want other people to see me differebtly, but guess what, they did anyway
Thank you for talking about this issue. I've just been diagnosed at 38 because I've not shown the traditional traits back as a kid. 1 because if it was not obvious then you are not autistic and only doing it for attention. 2 autism has only became more talked about in the last 10 years. I totally understand where you are coming from and I agree with you. The autism test and markers are 99% for the male population. As a female you have to push and push. This day and age the markers should be scrapped and reevaluated as autism is becoming more and more common. Some off the things your family did with you are what my family did to me. Enjoy being proud of your autism diagnosis and if people challenge and state that girls can't be autistic then let them as they obviously do not know what you and every other person has to deal with. ❤
I was obviously autistic as a child, in the 1980s and 1990s. but I was an easy female child. And some traits and stims were shouted out of me. "Stop turning on the waterworks", waterworks was their word for crying, heard that so many times I eventually stopped crying in front of them. First of all I had speech therapy age 5, them by my 9th birthday video I can't make my language structure understood so I just stopped speaking (consciously chose to just learn a few phrases). Looking at the 3 home videos I have as a child I'm sure these days I would have got a diagnosis, but then some children are still missed. I just look at the home videos (thank goodness for them) and there are so many signs. Seeing the home movies was what prompted me to finally go to the Dr and get on the waiting list. so many people had said to Me as an adult I think you might be autistic but I disregarded it until I watched the home movies and saw an autistic child. As part of my university course we had watched videos about autistic children and I was shaken to see it was like watching those assesment videos.
My parents' only reference frame at the time was high support needs autism, and I obviously didn't have that. I wasn't a problem child. Also I think my whole family is neurodivergent. My two biggest special interests as a child were science and computers, which pretty much just put me in the nerd box for the rest of my life. Nerds are supposed to be weird, and as I got better and better at masking people just assumed I was a late bloomer.
I was diagnosed as a very young child in the 90s and I tell you been diagnosed young doesn’t mean you get the right support. My Mum had to fight tooth and nail to get any kind of support that was barely adequate at best. Been diagnosed as a child dose help don’t get me wrong but the right support and accommodations aren’t automatically given. What I am trying to say the system fails both diagnosed and undiagnosed autistics.
About to get tested myself. Third time now, i was tested at 9 and again at 22. About 99% I have it, could be changes in diagnostic criteria etc. I will get the help I need, eventually.
Honestly, I was always told I was the "smart-y pants" of the family, like I am intelligent but socially, I couldn't be less intelligent if I tried but because I was smart in other ways, It wasn't picked up and back when I was in school, the only people that got diagnosed with mental illnesses/disabilities were the ones who were severely affected. These days, things are MUCH better, but now we're facing another issue. Health services are crumbling under the pressures of more awareness of autism, ADHD, etc. Like you, I've also been there with my parents (I'd like to think it wasn't their fault), if I had a meltdown or didn't wanna take part in something, I was just being naughty and this made me hide/shutdown my feelings at times unless they were very strong feelings and I couldn't help it.
The lower your support needs, the less likely you'll get diagnosed. Put another way, people tend to not get diagnosed until they're a big enough problem to other people. It's weird having a "disorder" that's only a problem when other people think it is. I made it till I was 40 before getting diagnosed.
Somehow the youTube algo has decided to recommend your videos to me. Interesting development. I used to be labelled as "autistic". Well more diagnosed as PDD-NOS, which is really just fancy jargon regarding, we don't know. Lmao. With me what I figured out anyways, is that in my own personal case it was trauma that was going on, and not autism. Since working through said trauma, things shifted dramatically. I am not saying you don't have autism. I am just wanting to bring this up, as during a talk I had with Max Derrat on Autism, this also came up. People coming towards him going, do I have autism. And I feel it is important to firstly refrain from labelling others, and to respect their journeys, something I learned by being labelled as autistic, and also not to jump to conclusions too easily regarding people who are still wondering if they have it or not. If you are not diagnosed, try to talk to a psychologist about it, but also make sure to see if it could be other things, even small t trauma, as Gabor Matte would call it. Otherwise you might run the risk of getting the wrong treatment, and the wrong things imposed upon one, and the actual thing never being addressed. I learned this the hard way, meanwhile suffered for decades.
Im glad you figured out what was going on for you, but I am personally very much autistic and diagnosed as such after many incorrect diagnosis attempts with other things.
@@DanaAndersen Like I said I am not saying you are not autistic. I just want to bring it up as incorrect diagnosis can go both ways. And for the quality of life of the person it is important for them to figure out what it is. I am also sorry for you going through many incorrect diagnosis attempts. Living with the incorrect diagnosis myself I know how hard it can be. So it is more of a general comment for people in general. Not one directed towards you directly. So Again I want to reiterate that I am not saying with this that YOU are not autistic. I don't know you, and I don't really care about the labels. They are just a facet of oneself anyways. Not the totality of oneself. It is when we get too attached to labels where things can go wrong. People get very defensive about it, because their sense of identity is wrapped up in it. Sorry for my Buddhism lecture. 😅
I just saw from your content that this is hitting on something within the shadow probably, next to other issues between the persona and shadow. So yeah. I am sorry for stirring up the shadow for you right now. And also for any complexes that might get triggered regarding it. I hope you will find the strength to stand strong in who you are, and not let others define your being. Blessing to you on your journey.
@@DanaAndersen I am just saying what I did, because I wanted to clarify what I meant. I feel that we are talking next to each other. Lmao. Like I said. Yes. You are Autistic. I am not autistic myself. Just making a general statement about my lived experience with my comment. So I am going to leave it with that. You can read all you want into what I wrote. I also will say to others to just leave this be. It is not worth our shared time to spent more time on this. This includes Dana. I bet they have better things to do then this.
It's often accompanied by paragraphs of diatribe telling me that if I really was autistic, I WOULD have been diagnosed as a child. There's contexts in which it's a perfectly fine question to ask, but I haven't been asked it in those contexts.
What normal people don't realize is that some kids don't get diagnosed because nobody gave a shit. Parents, teachers, guidance counselors, principals, take the path of least resistance. Instead of trying to figure out what's going on...
Yes 😮
In my case I went to preschool in the late 70s. They noticed that I had problems socializing and I was delayed going to kindergarten. But I wasn't severe enough to meet the definition of autism at that time and I was female. I broke down mentally when I was 14. Then I was put into the mental health system. All my behaviors were seen through a mental health lens. A counselor thought I had autism in my 30s (2007). I was evaluated for autism and for my complex mental health issues. The psychologist said that I may have had autism as a child but I did not as an adult. 😮. I was diagnosed with ADHD. I read 3 books on autism and didn't think I had it because of having too many special interests, having empathy, not liking routines etc. So I didn't worry about autism until a couple years ago when my case manager who used to do autism assessments pushed me to be tested. I got diagnosed with level 2 autism at age 47. The level 2 shocked me. I wasn't even sure that I would qualify at all. I guess I was just being seen as mentally ill. But mental illness wasn't the whole issue.
Yep. The late 70s were not kind to anyone who needed any sort of support, that’s for sure. I was not diagnosed as a child either.
You hit upon probably the biggest reason why children are not diagnosed - because they are not perceived as "trouble". This is most obviously the case for children who engage in bad behaviour at home, school or in their neighbourhood. Children who are also "troubled" are much more likely to be diagnosed, e.g. those who are bullied, are clearly deeply unhappy, failing at school or refusing to go to school. By contrast the child who is quiet, well-behaved and getting average or good results tends to get overlooked even when they exhibit many autistic traits.
Families are also like bubbles and parents and silbings often get used to very unusual and sometimes difficult behaviour from a child. If parents or siblings have elements of autism themselves they may find it hard to recognise in their child, e.g. because the parents aren't very social they don't see it as problematic if their child has little or no social contact. The "bubble" analogy also can apply to schools where some autistic children who are seen as "odd" rather than troublesome are more or less accepted by teachers and other pupils. The same can also happen into adulthood and helps explain why some seemingly obvious autists are either diagnosed late or not at all.
Yes
I was diagnosed last year, at 29.
I guess my issues weren't noticable enough or my parents weren't able to see it.
My mom was alone with four kids while working and having her own issues. My oldest sister had a lot of issues and I suspect her to be autistic as well. We don't talk anymore, so idk. But she would be very difficult to deal with, so I would be surprised if the rest of us were overlooked.
I was extremely shy as a kid, especially with strangers around or in group settings. Still am actually. Our former neighbor mentioned how I would stand back and watch other kids and people for a while before engaging with them.
I used to play alone very often. And when other kids were involved, I had a hard time playing with them when it came to imaginary play. And I really wanted to belong. I would mask how wrong it felt in the moment and try to pretend to view the game as they did.
Apparently I hated having sand stuck to my fingers and would scream until my mother had cleaned them.
I don't think I was a stereotypically autistic child, but there were signs. I guess the public wasn't as aware of issues like autism in the 90s and early 2000s. I mean, look at how autism is viewed and discussed today.
An early diagnosis would have been extremely beneficial for me and my family. I have struggled my whole life and no one knew why. All the time spent blaming myself for not being normal or easy going or fun or capable or whatever was a complete waste.
I am still coming to terms with the diagnosis, but it has helped me a lot. I have more compassion towards myself and it's nice to know that I'm not a complete failure of a human being. I just had to understand that I'm not my mask and the years of trauma. There's someone valuable underneath all of that.
I recently watched a video of someone mentioning how the self hatred we feel is part of our mask. It's not really us hating ourselves, it's what we were told by others and society. And boy do I relate to this statement. Because I don't really hate myself. It's just the anger I feel about not being what society wants me to be. And the anger I feel because I can't keep up with the mask all these years have created.
I think it's quite an interesting concept.
I’ve lived a similar experience but from the other side. I’m male and maybe autistic and my mother was very forgiving with me, but my sister always got scolded for everything she did, even if she did the same as me. I don’t know if it was because of her personality, being too emotional, or just not being a boy, but I never understood my mother’s double standard. However I’ve always been there to support her. I love my sister so much, and I always tried to offer emotional support in the ways I knew how, because I had no idea what to say when she cried, and she cried a lot, but I used to stand there by her side without saying a word, just being there. She always thanked me for those moments.
I find it sad that most relationships between siblings are not like this, but bitter and toxic.
Recently I encouraged my sister to seek an ADHD diagnosis, and it was very hard for me to convince my mother, because if we both showed the same trait she seemed to think that it was moral fault in my sister where it was a forgivable condition in me.
Glad you're deleting the naysayers ❤
This is the question that every late diagnosed labours over - thanks for sharing your experience.
Highly relate to the undiagnosed 'weird' family that move around a lot 🌈 ❤️
as a girl growing up in the 80s, I had a very similar experience. I was finally diagnosed last february at 46 years old...(after many misdiagnoses)
Same here. In the 80s girls and even boys who could sort of function weren't diagnosed. They were only diagnosing people with higher support needs then. I just got diagnosed this year (2023) at age 47. And I was diagnosed with so many other things before this (a couple were correct but most were not).
@@Catlily5 & @irismelis
How do you figure out which diagnoses are right and which are wrong?
@@thethegreenmachine Lots of my diagnoses were removed by later psychiatrists. Other diagnoses I think are correct because the medicine works. I ask the professionals why they think I have an illness. I learn a lot about an illness to see if it fits. I watch videos about the illnesses and read about them.
@@thethegreenmachine Also, some things I am diagnosed with I am just unsure about. Like OCD.
@@Catlily5
ty :)
I’m a 46 year old woman and my autism wasn’t diagnosed until four years ago. I had a terrible time at school. My difficulty socialising was put down to extreme shyness. I couldn’t do a lot of my schoolwork because of my problems with organisation, planning, and problem solving. There were some things I was really good at, like reading and remembering factual information. My teachers didn’t understand the discrepancy between what I could do and what I couldn’t. When I couldn’t do things, they assumed I was just being lazy or not listening properly.
Luckily I had a very understanding mum. Although it didn’t occur to her that my problems might be due to a medically diagnosable condition, she knew that they were real and I wasn’t making them up to get attention. I have a hypersensitivity to touch as well, and my mum never bought me clothes without letting me try them on first. She knew that school was too much for me, and she always let me take time off when I needed it. (I went to school in the years before parents were fined when their children missed school). My attendance was terrible, but I struggled to learn in the classroom environment. Being away from school gave me the chance to learn from my mum the things I couldn’t learn when I was there.
It was watching a documentary a few years ago that made me realise I was autistic. It hadn’t occurred to me before then. I think part of the problem is how autistic people are portrayed in the media. Autistic characters in TV dramas are either very high functioning, (the socially awkward genius), or very low functioning, (the child who can’t communicate well and throws tantrums a lot). These are both valid representations of autism, but it makes people think that all autistic people fit into one of these extremes. When in reality, a lot of autistic people can be high functioning in some ways and low functioning in others. I don’t think things are quite as bad now as they used to be, but autism is still very much misunderstood by a large proportion of society.
Can empathise with you. I was born in the late eighties and the paediatricians just thought I was a "late bloomer". Had a ton of very big developmental delays but they never got followed up due to ignorance and utter incompetence because I was a happy and friendly infant. Was easy to raise since I felt compelled to generally follow rules. Started realising I was different when I was 11 and learned to mask. Took me until I was 29 to get diagnosed and the specialist pointed out that my autism was bloody obvious when I was a toddler given everything my dad wrote in the early development questionnaire (developmental delays, echolalia, sensory problems etc). Was such a relief, and I could finally stop punishing myself for being different and having difficulties that people just said were in my mind.
It has been all too easy to miss getting diagnosed. Thankfully that is changing, but we have a long way to go and particularly for girls.
Being compelled to follow rules really stands out for me, because I very much did when they made sense, and suddenly became a problem if they didn’t. Being told it’s all just in my head too, if it had been I wouldn’t have spent years trying my absolute best and getting nowhere!
With you on being thankful that things are changing, and thanks for commenting!
I got my autism diagnosis last year at the age of 47. I think autism has only really been studied and understood the last 20 years or so. Before that I think you were only considered autistic if you were the stereotype, Rainman for example. I was the quiet kid, didn't talk much and was a slow learner. I was always along with half a dozen other similar kids being separated from the rest of the class and being sent to remedial classes for extra English or Maths. Nowadays I think we would all have been diagnosed with ASD in early childhood but I went to school back in the 1980s(1979 to 1992 in my case). My schools just thought I was dyslexic instead.
I got diagnosed at age 47 also!
Also. I am sorry that you had such an experience in childhood. I know it is not easy growing up with parents who do that. Emotional neglect, screaming and all these things are no joke. I hope you have managed to reconnect with your emotions in the mean time. They are an important part of who we are.
Well, I think the definition of Autism has changed. I grew up in the 1970's. Despite my frequent meltdowns, I was viewed as "normal." Like you said, girls did not have autism... and that was part of the definition at the time.
I think for me a combination of two things. like you being able to self-contain or isolate myself and read a book away from everyone when things were overstimulating. Also my parents being very uneducated on mental health or various possible condintions and likely being undiagnosed themselves (definitely my mum with ADHD) making our very odd behaviour seem kinda normal.
So many times I remember being baffled as a kid how easily my aunty could sort out an argument or problem me and my mum would talk past eachother over. Or I visit a friends house and experience an unsettling level of calm and an eerily managed environment in the home.
It always weirded me out when I went to friends houses and their parents would ask what foods I didn’t like and cook around that, rather than just trying to force me to enjoy food I don’t like 😅 Sooooo many others, but that one stuck with me
I’m lucky because i got diagnosed when i was 4. the headteacher of my primary school noticed autism in me and told my mum and got me diagnosed straight away. very grateful. my younger brother was also diagnosed with learning disabilities too. Ever since I’ve got older, I’ve noticed signs of autism in my parents especially my dad (rip him) but he had so much special interests and my mum also has sensory issues and hates change and gets stressed out in situations too.
Thank you for this video Dana, I'm late diagnosed, and I think there are two main reasons why I wasn't diagnosed as a child in the 70-80'ties, one thing is that I don't think there was as much knowledge about it in the school system as we have today, but also that every time my "alternative" side was bought up in school meetings, it was brushed off by my parents, as - oh.. he is just like his father... nothing to worry about. My mother was very firm, that her child (me) didn't have a problem, to the point where she went against the schools recommendations and rejected to have me examined by a psychologist when I couldn't cope in school.
Ooft, that hit hard.
I'm in the process of getting diagnosed in my mid-twenties. I was definitely similarly raised in a likely heavily undiagnosed family, and was relatively easy to handle.
I find it kinda wild that I wasn't diagnosed as a little kid. I had frequent, major meltdowns; I had social issues from a very young age; I had a lisp and eventually got speech therapy; I was literally a little boy obsessed with categorising vehicles. But then, it really wouldn't surprise me if both my parents were undiagnosed autistic, it runs in both their families. I think they as kids were probably not that unlike me.
It doesn't at all surprise me that nobody noticed I could be autistic when I was a little older, 6-12 or so. There were just obvious other reasons for me to be having problems for a long time - my mother had major health problems leading to a pretty neglected few years, and then just as she was getting better we moved countries twice, and by the time things had settled down again I was starting to have pretty solid masking strategies.
Its only in the last year or so, struggling with really deep burnout and unable to figure out why, that I've finally worked out I'm almost certainly autistic. And it feels so good to realise that my constant sense of not belonging isn't just a really different childhood and background to everyone around me, but that its a pretty universal experience for autistic people.
My passport says 'Australian', and growing up overseas I think that part of me must have thought that the nature of being a foreigner must be part of why I just didn't fit in. When I moved back for uni and nothing changed, I gave up on feeling like I belonged. Which I think I raise to say how much the sense of belonging I feel in a video like this means to me.
Damn i felt his one. Not because of an autism diagnosis but because of the things that were overlooked as a child because the parents wellbeing came first. It's painful but it does need to be processed. Thanks Dana.
I'm a late diagnosed dyspraxic genXer. I actually attribute my late diagnosis entirely to having narcissistic self absorbed parents who didn't want to be inconvenienced by my special needs. So many of my teachers and other school officials tried to communicate with them that I had some particular special needs but they just didn't want to be bothered to investigate things further and work with the school officials in terms of getting me the proper help and support I needed.
Ignorance is no excuse. Developmental Coordination Disorder has been in the DSM series since the early 1980s. Likewise with so many other neurodivergences that on some level have been clinically known for decades. I would say that at least since the 70s there has been enough written about specific learning difficulties and developmental differences that any parent who is willing to do their due diligence could do some research and develop enough of an understanding as to their child's special needs, even without some of the more recent diagnostic categories that have been recognized. In my opinion parental ignorance has ceased to be a valid excuse for some time, in terms of getting special needs children the support that's needed early in life.
I had an ex who was diagnosed autistic in childhood and their mum quite often spoke about how it was a battle to be listened to regarding it, so though I agree, I’d add that parents need to be prepared and have the time and resources to research and reach out to the right people, so those of us with parents who actively didn’t care just didn’t have a chance really
@@DanaAndersen Exactly. And I think that economic policies that promote better work life balance can go some way towards creating a society in which parents are better able to meet parental duties like being the best advocate that they can for their children, particularly those with special needs. But in cases where the parents simply don't care, to deal with their child's special needs, it's child abuse plain and simple. And I honestly think it should legally qualify as such.
My experience of growing up was one where my family knew I was autistic but they had incredibly high expectations for me to act normal and do better then everyone around me academically. Being autistic was treated as my secret shame that I had to do everything to overcome which is why I think now I have very high rejection sensitivity disphoria.
I think the bit about parents just thinking you’re a difficult child or trying to get attention is one of the harder parts of a late diagnosis - why couldn’t they have had more compassion EVEN IF I wasn’t autistic?? My parents are much more supportive now but it still hurts that without a diagnosis, they would still see me as bad, defiant, unable to grow up, too clumsy, etc.
I sometimes find it baffling I wasn't diagnosed as a child. They definitely knew something was wrong.. I was placed in special ed classes nearly immediately like at start of first grade. They also diagnosed me with a "language learning disorder".. like honestly I find it very strange they didn't see what to me looking back was extremely obvious. Entire early childhood I was just the odd kid and never had many friends and just had tons of odd behaviors. Chewing my clothes, weird fidgeting habits during class, lots of leg bouncing and sleep loss, was bullied a lot. My theory on it is they just thought "we have enough of a diagnosis to get them into the special ed classes to get them help, we don't need to look deeper."
The special ed classes definitely helped but as I got older they helped less and less and also my external academic performance massively improved in HS despite calling out sick a TON. Like there was a limit for how many days you can call out and I went way over it every year. I wasn't "really" sick but now looking back its obvious to me that I was burnt out and needed rest, but I was able to make up the work and get good grades in massive bursts of focus where I would learn weeks of content in a single night. So they just didn't bother to worry about it and let me do my thing. But I was masking very heavily and also my sleep became very dysregulated at this time.
And then after leaving HS I entered uni and again was able to do unorthodox coping strategies. Most my classes didn't take attendance so I just never went, did the hw and did massive cram sessions. And again my sleep was very fooked during this time and I also developed a caffeine addiction. But I managed to graduate and even had 3 internships so people told me I was doing great and had nothing to worry about. But even towards the end the toll was building up, my last internship didn't go that well, a bunch of my math classes I got poor grades in because my cram strategy stopped working.
After I left school is when shit really hit the fan, took more than a year off after graduating, got a weed addiction.. and the next 8 years of my life were work a year or two at a tech company and then burn out and have massive meltdowns in a very traumatic way and quit. Absolutely the worst years of my life. Now looking back the pattern is very obviously autism. But because I was able to find strategies to succeed academically no one cared or thought my issues were important. Who knows how things would have gone if I had had a proper diagnosis early on. The fact that a dr did look at me and gave me a "language learning disorder" diagnosis kinda makes me mad because it was so extremely close to what was actually wrong but still missed the mark.. Now I have a proper diagnosis.. who knows how it will help but atleast I know now and can try to actually accommodate and unmask.
Good you sre deleting the comments. I wouldn't want to deal them either. I was quite lucky to be diagnosed with Aspergers at age 8 and have the support systems in place from an early period. But having a Mother who was a teacher who worked with children with special needs was part of the reason I was diagnosed early most likely. I'm also a man so it tends to present more clearly and theres the stereotype. I also tend to be OK at masking and I had friends at school but it was still bullied but thankfully that stopped before secondary. Still had "excited hands" at things which I obsessed over when I was younger though. I still get that feeling when watching the Formula 1 or motor racing when my favourite driver is doing well or theres a particularly exciting moment and my body goes into overdrive trying to cool down while Im on the edge of my seat but the hands stay still now.
"You were always quirky and different but I didnt think it mattered," (c) mum
She still casually mentions some of the things she noticed about when I was little that are very obviously autistic traits (like never making eye contact and hating changes), she is still very aware of how it made me different from other children
And still somehow thinks it's normal? She's basically like "yea, I always knew you werent normal. I thought it was normal." And I can't understand her thought process here for the live of me
The closest I got to a feasible explanation was that she didn't want other people to see me differebtly, but guess what, they did anyway
Thank you for talking about this issue. I've just been diagnosed at 38 because I've not shown the traditional traits back as a kid.
1 because if it was not obvious then you are not autistic and only doing it for attention.
2 autism has only became more talked about in the last 10 years.
I totally understand where you are coming from and I agree with you. The autism test and markers are 99% for the male population. As a female you have to push and push. This day and age the markers should be scrapped and reevaluated as autism is becoming more and more common.
Some off the things your family did with you are what my family did to me. Enjoy being proud of your autism diagnosis and if people challenge and state that girls can't be autistic then let them as they obviously do not know what you and every other person has to deal with. ❤
I was obviously autistic as a child, in the 1980s and 1990s. but I was an easy female child. And some traits and stims were shouted out of me. "Stop turning on the waterworks", waterworks was their word for crying, heard that so many times I eventually stopped crying in front of them. First of all I had speech therapy age 5, them by my 9th birthday video I can't make my language structure understood so I just stopped speaking (consciously chose to just learn a few phrases). Looking at the 3 home videos I have as a child I'm sure these days I would have got a diagnosis, but then some children are still missed. I just look at the home videos (thank goodness for them) and there are so many signs. Seeing the home movies was what prompted me to finally go to the Dr and get on the waiting list. so many people had said to Me as an adult I think you might be autistic but I disregarded it until I watched the home movies and saw an autistic child. As part of my university course we had watched videos about autistic children and I was shaken to see it was like watching those assesment videos.
My parents' only reference frame at the time was high support needs autism, and I obviously didn't have that. I wasn't a problem child. Also I think my whole family is neurodivergent. My two biggest special interests as a child were science and computers, which pretty much just put me in the nerd box for the rest of my life. Nerds are supposed to be weird, and as I got better and better at masking people just assumed I was a late bloomer.
I was diagnosed as a very young child in the 90s and I tell you been diagnosed young doesn’t mean you get the right support. My Mum had to fight tooth and nail to get any kind of support that was barely adequate at best. Been diagnosed as a child dose help don’t get me wrong but the right support and accommodations aren’t automatically given. What I am trying to say the system fails both diagnosed and undiagnosed autistics.
About to get tested myself.
Third time now, i was tested at 9 and again at 22.
About 99% I have it, could be changes in diagnostic criteria etc.
I will get the help I need, eventually.
I wasn't diagnosed because I'm a people pleaser, my parents didn't know what autism is and no one in school cared
Honestly, I was always told I was the "smart-y pants" of the family, like I am intelligent but socially, I couldn't be less intelligent if I tried but because I was smart in other ways, It wasn't picked up and back when I was in school, the only people that got diagnosed with mental illnesses/disabilities were the ones who were severely affected. These days, things are MUCH better, but now we're facing another issue. Health services are crumbling under the pressures of more awareness of autism, ADHD, etc. Like you, I've also been there with my parents (I'd like to think it wasn't their fault), if I had a meltdown or didn't wanna take part in something, I was just being naughty and this made me hide/shutdown my feelings at times unless they were very strong feelings and I couldn't help it.
The lower your support needs, the less likely you'll get diagnosed. Put another way, people tend to not get diagnosed until they're a big enough problem to other people. It's weird having a "disorder" that's only a problem when other people think it is. I made it till I was 40 before getting diagnosed.
Somehow the youTube algo has decided to recommend your videos to me. Interesting development. I used to be labelled as "autistic". Well more diagnosed as PDD-NOS, which is really just fancy jargon regarding, we don't know. Lmao. With me what I figured out anyways, is that in my own personal case it was trauma that was going on, and not autism. Since working through said trauma, things shifted dramatically. I am not saying you don't have autism. I am just wanting to bring this up, as during a talk I had with Max Derrat on Autism, this also came up. People coming towards him going, do I have autism. And I feel it is important to firstly refrain from labelling others, and to respect their journeys, something I learned by being labelled as autistic, and also not to jump to conclusions too easily regarding people who are still wondering if they have it or not. If you are not diagnosed, try to talk to a psychologist about it, but also make sure to see if it could be other things, even small t trauma, as Gabor Matte would call it. Otherwise you might run the risk of getting the wrong treatment, and the wrong things imposed upon one, and the actual thing never being addressed. I learned this the hard way, meanwhile suffered for decades.
Im glad you figured out what was going on for you, but I am personally very much autistic and diagnosed as such after many incorrect diagnosis attempts with other things.
@@DanaAndersen Like I said I am not saying you are not autistic. I just want to bring it up as incorrect diagnosis can go both ways. And for the quality of life of the person it is important for them to figure out what it is. I am also sorry for you going through many incorrect diagnosis attempts. Living with the incorrect diagnosis myself I know how hard it can be.
So it is more of a general comment for people in general. Not one directed towards you directly. So Again I want to reiterate that I am not saying with this that YOU are not autistic. I don't know you, and I don't really care about the labels. They are just a facet of oneself anyways. Not the totality of oneself. It is when we get too attached to labels where things can go wrong. People get very defensive about it, because their sense of identity is wrapped up in it. Sorry for my Buddhism lecture. 😅
I just saw from your content that this is hitting on something within the shadow probably, next to other issues between the persona and shadow. So yeah. I am sorry for stirring up the shadow for you right now. And also for any complexes that might get triggered regarding it. I hope you will find the strength to stand strong in who you are, and not let others define your being. Blessing to you on your journey.
@@artemisXsidecross Thanks!
@@DanaAndersen I am just saying what I did, because I wanted to clarify what I meant. I feel that we are talking next to each other. Lmao. Like I said. Yes. You are Autistic. I am not autistic myself. Just making a general statement about my lived experience with my comment. So I am going to leave it with that. You can read all you want into what I wrote. I also will say to others to just leave this be. It is not worth our shared time to spent more time on this. This includes Dana. I bet they have better things to do then this.
I don't think "why weren't you diagnosed as a child" is in anyway a horrible comment. I don't understand. It's just a question.
It's often accompanied by paragraphs of diatribe telling me that if I really was autistic, I WOULD have been diagnosed as a child. There's contexts in which it's a perfectly fine question to ask, but I haven't been asked it in those contexts.
I am sorry that people are harassing you! They obviously don't know the history of autism.
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