Reasons for Late Autism Diagnosis (Why Autism was Missed in Childhood)

great topic!

I am 56 years old learning I am autistic. There is no way I could have been diagnosed as a child. Sadly people have thought I was autistic for more than 20 years but when I researched it I did not find the information I needed for it to be obvious. Today there is so much on Google and Youtube. My lived experience makes so much more sense now. Thank you for adding your experience to help me understand mine.

I remember thinking, at 9 years old, that if girls could have autism I'd be Autistic. At 51, I was finally officially diagnosed!

I appreciate your work Karen. Regarding the idea that so called experts are getting better at understanding autism, it is actually autistic people, the clients, who are the teachers, and who are passively or actively teaching these so called experts who are actually the students, what autism is and how it works. Then here are people like you who directly dedicate their time to better understand and address autism for the benefit of all. And the internet has helped a lot in all of this. This is not to take away anything from normal people but to realize and appreciate and include the works of autistic people, in any field, because their works are always the best that goes beyond what normal people can do. To not notice this, whether intentionally or not, is to continue the image that autism is only a negative thing and has no place in the world and should be eradicated which is the normal view on autism. I know this point is off on a tangent to your main topic, but i just wanted to point this out as it is extremely important. Addressing autism on a greater context, throughout history, which i barely touch upon here, is my work. Focusing on personal issues, problems, and diagnosis regarding autism is also important. But there is so much more good work to be done.

Also the age of the doctor is important for them to detect autistic people. It is just isn’t taught in medical school in the past or presently and they just know stereotypes. But, in the future we hope for knowledgeable professionals. Some older doctors might be open if they have an autistic friend or relative. It’s rare in my limited experience.

Hi Karen. I really appreciate your channel. I'm 37 and I was diagnosed with autism earlier this week after initially being referred to someone for ADHD testing. More specifically, I was diagnosed with PTSD, ADHD and autism. I'm really glad I found your channel, because it's insane how similar our experiences seem to be. I was raised essentially as an only child (I have a half-sister and half-brother who are two of the most important people in my life, but they're both about a decade older) by a mother who I have recently cut contact with. I believe she has borderline personality disorder with some extreme narcissistic traits. At the very least, I know she is cluster B. But yeah, in the same way it seems like you were raised, I never went to the doctor. In fact, until very recently, I didn't even know it was possible to reach out to people about any kinds of problems. I grew up in an extremely isolated way and have always believed I was the only one in the world who just couldn't do things right. I always thought that I just had depression because of the way I was raised. I pretty much assigned all of my behavior to trauma, and autism never even entered the realm of consideration for one second until a few months ago. In fact, there were times I "joked" about maybe having it, but even then it seemed totally ridiculous that I was anything except traumatized. So, I guess I just want to say thank you for what you do. I stumbled upon your videos last night and watched them for at least a couple hours. Psychology is definitely one of my special interests too, so it's cool to hear about narcissistic personality disorder and autism in the same place. Before the autism diagnosis, I was watching hours and hours of stuff about cluster B personality disorders, thinking I may have had BPD as well (I think you mentioned this confusion in your own experience in your recent interview with Orion Kelly). Anyway, before I ramble too much, thank you!!!

There are a lot of undiagnosed or recently-diagnosed middle- or even older-aged adults. Growing up there was no conception of autism except for classic autism. Unless a child had severe learning difficulties that required special schooling they would be expected to cope and a diagnosis would never be on the agenda. If a child then made average or good progress in education and wasn't either failing or getting into trouble the chances of any further investigation would be almost non-existent. This would also largely be the same in adulthood - as long as an adult wasn't seen as a problem and kept a low profile they would be overlooked. Things have been changing in more recent times but awareness of autism among those of middle age or older remains limited. There can also be a misguided notion that even when autism is suspected that a person can't actually be autistic because they've "learned to cope" - despite the fact that many of them aren't really coping or only doing so with great difficulty.

oooh, thank you so very much! especially for the reasons why parents might not want a diagnosis for their child! it was hard coming from exactly that shitty situation you talked about. i had to figure it out on my own and i can imagine it was similarly hard for you! living with being different, getting no support or even understanding, having to work harder than "normal" people to fit into society, having to find everything out all alone and then review and revaluate the whole life with this new knowledge and maybe even then have some people trying to take that from you by saying you are not valid because the diagnosis is happening so late... this is so brave and it helps so much! i feel less alien and alone!

Nobody ever identified my autism. I just happened to see a video of someone who is - and then realised that I am like them. I haven't bothered getting a proper diagnosis - and I don't see any advantage in doing that - it's really expensive and not a process I want to put myself through. I'm 100% certain that I have it - and don't need some doctor to confirm what I already know. I expect there are many males who also go undiagnosed as well as females. When I was in school they recognised that I was very different to the others - but they had no idea why. All they did is punish me for not being more like the others.

For me one big reason, other than growing up in the 80s/90s, was that I strongly suspect that both my parents are undiagnosed autistic. My differences would not have been seen as that since they would recognize themselves. And to add to that a strong generational trauma component, where autistic traits had been seen as more of a personality trait and praised/shunned depending on the person and situation. Both my sisters also identify as highly sensitive persons.

Despite being a biological male, I wasn't diagnosed until 40 because I was raised in a very toxic place (very denial). Later, in adulthood, I wasn't able to build a "normal" life. I'm still struggling with life.

This is really good video, I really identify with all you say, I was diagnosed at 56, it explained so much and made such a difference to finally understand myself. I’m now 62.

Im an Australian 25yr old woman with autism, CPTSD and fibromyalgia, my medical exemption just got rejected and I now have no income, because I was having a fibro flare and breakdown, unable to get to my job service provider appointments, unable to call human services, I don't know how im supposed to feed myself or keep a roof over my head, im poor and disabled and too poor and disabled to prove it, $5,000 for an autism diagnosis! 💔 I have no supports friends or family in my life, I try so hard to get help but it seems like very few people care and those that do cant help.

I’m 33 and I have my intake appointment Friday. I am 99% sure I’m autistic after doing thorough research. Looking back the signs were definitely there. The biggest one, people always made comments (and still do) on why I never smile. Literally going back to childhood people noticed and just thought I was a sad depressed kid (that shouldn’t have been ignored either) but the whole time it was just me being myself and showing my neutral face. Edit: Well I’m not necessarily older or of the older generations but I grew up with internet when it was primarily in its infancy. In college I did use the internet for research papers and even then I would have never suspected it. I didn’t start to suspect it until 2020/2021 and even then would dismiss it because I didn’t have the stereotypical autistic traits. I remember taking a quick 10 question quiz back then and it only said I had traits but I figured because I do give eye contact and can read body language there was no way I was autistic. It wasn’t until a month ago I decided to really go down the rabbit hole and I learned about masking and that’s when the light bulb clicked on and I instantly knew this is what I’ve been doing all of these years. Going back to the parents, I think my parents were just ignorant. The signs were definitely there but in the black community getting seen my a psychologist or going to therapy is stigmatized. It has gotten better with my generation but with baby boomers and up, yeah they definitely weren’t taking their kids to get seen unless absolutely necessary.

I’m 69 years old and have only figured this out recently. It’s so hard getting help in America, especially when you’re older.

When you are non-white, its easier to assume its related to language / customary or upbringing, than it is to review for autism in my observations. Hard to get a confirmation of that ofc though.

I think I'm the same age as you (I'm 45) and it's nice to hear about the past, very nostalgic 😊 thank you for the interesting video.

I have 2 sons who are about 7 years apart. One was born in 2000 and one in late 2006. There was a HUGE difference in diagnosis from one kid to the next. The first was diagnosed and treated for ADHD only even though he was a clear cut, classic case of autism. The second was diagnosed with AuDHD even though his traits are not as obvious. I was born in 1975 and do not have a diagnosis but I am definitely also AuDHD. I really wish that I had been diagnosed and given accommodations as a child. I really was struggling. No one really noticed. I was hyperlexic but could not do math. The rest of the kids all thought that I was weird and I could never figure out why. I am sure my parents never noticed a thing…because my Mom at least is also autistic.

Here's a question: Is there value in seeking a diagnosis? My traits are my traits; assigning them a label isn't going to make any material difference, is it? I'm in my 40s, and I've mostly constructed my life in a way that I don't have to do the things I'm not good at (like dealing with people). Does a diagnosis help me?

My parent was an abusive suspected narcissist and I was an undiagnosed autistic child. I kindve floated but one of my principles expelled me for a document I didn't have for school.