Autistic and didn't know it?

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Did any of you get a DX and not know you were autistic? Like your parents didn't tell you and your parents didn't seek services?

How was your life growing up not knowing you were autistic? How did you eventually find out?

Considering the old requirements to be tested positive for autism, most HFA's over the age of 30 grew up not knowing. My mother had me tested as a toddler back in the 60's and I came out normal because I wasn't severely autistic. My life probably wasn't much different than a child of today with HFA, except I was not aware of why I was having so many problems. I was told I was normal and to stop acting weird, or tuffen up, or stop being so shy, or... all the wrong ways to handle the problems that people with HFA deal with.

I was only told I had Asperger's, not autism, not autism spectrum, just Asperger's. So no they never told me. I had to find out by reading my old diagnostic report and it said autism spectrum disorder, mild and I also found out AS was a form of autism by looking it up online at 15 years of age and autism results popped up so I thought "I'm autistic?" and asked my parents about it and they said I wasn't so I asked them why does it pop up when I look up Asperger's online and they said it was a form of it. I would be an adult before I understood that Asperger's was autism. I had been told as a teen those two were different and AS was just a form of it but they were not autistic. I think it was that way in the 90's when I was diagnosed and now AS is autism and now aspies are autistic.

I grew up in special ed and seeing a bunch of doctors like my mom was going doctor shopping which is what I think it was because she didn't know what was wrong with me and no one could find out. I had all these labels so it was like I had a bunch of stuff wrong with me. I was also in a self contained room and then put in mainstream. I grew up knowing I was different but didn't really know I was if that makes sense. I felt I was full of bad luck and I thought others just liked to pick on me because I am me and because of my name. It never occurred to me that I was doing something wrong so I had the victim complex because I didn't know and I noticed I had a different set of rules than everyone so that made it worse for me. I was finally dragged to a psychologist because my mom didn't know how to help me and I was getting picked on by lot of kids and I was being targeted so it wasn't just normal kid stuff like my parents were making it out to be until I said it happens to me all the time and my little brother said something about it too because he had witnessed it. But they always listened to me and my mom always tried to understand me and make me feel normal and found ways to help me so I can get better without making me feel I needed to be fixed and that I am wrong.
I can see why my mom wouldn't tell me what was wrong with me until the AS diagnoses because I just had too many labels and it would have made me feel I was broken and feel worse about myself.

As a child, I tested out as a genius but my folks never let me know until a few years ago. And the pediatrician, priests and a few other experts (!) noted that there were...oddities. Extremely early speech & advanced self-taught reading. No eye contact, sensory sensitivities, lack of connecting with other kids or making friends, etc. Apparently it was really, really bad to be different & our subculture didn't like different. So everything was geared toward feeling shame about being strange and learning to hide it as best I could. I was lucky to find out I needed glasses by the time I was 18 and that I had an audio processing disorder halfway through college (kept flunking Spanish). Those at least were physically measurable; in the culture of my childhood, to be on the spectrum would've likely resulted in me being institutionalized. It was very much DADT. I didn't find out until after we found out about my daughter, started seeing the parallels & mentioned it to a therapist.

My parents would bizarrely hint that I had tested strangely as something as a child, but didn't "reveal" that I truly was "quantifiably" different from others (as tested by pyschiatrists doctors etc.) until I was 18 and then only once and then never brought it up again. They were very angry that I never "grew out of it" and remained essentially unchanged, however, their expectations have changed dramatically of course as I aged. It was rather horrid and unpleasant; I prefer not to think about it. I only hope/wish that people behave more empathetically and kindly towards younger aspies/auties and do so kindly as to leave me alone.

I certainly do wish I had been told I was autie before that, it would have helped me understand how and why I was different from others. I think I would have been able to cope better if I had known. I wish people were more understanding and accepting of it now-a-days it feels very far from the Khanner days of refrigerator-mothers and institutionalizing people, but at the same time it feels very near as well.

What FallingDownMan posted is my response too, except I have no idea if anyone assessed me when I was younger, as I do remember "seeing" people but not knowing what those sessions were about, and my parents were world class secret-keepers about tons of stuff in our family. I don't know if they "knew" something. My mother would only say teachers kept on at her and dad about something to do with me, but the most she would say is the concern was "giftedness" and she and dad kept refusing "help." I will always be in the dark about that side of my history because they are both gone now and I can't ask.

(Edited to add -- I wish I'd known/been diagnosed/been told as early as possible, because I struggled my whole life and the confusion and mystery about WHY I struggled was as miserable to me as the struggles in themselves.

I grew up very very confused, i always knew I wasn't "normal". I had a major tragedy when I was very young (6) and most of my symptoms got put down to that, I was always Diagnosed with Anxiety and Depression and always wanted more from the Doctors and Shrinks. I had therapy after therapy and NOTHING WORKED! i still felt very isolated and that i never fitted in, until I met my wife (12 years ago) then EVERYTHING changed!

She has always loved my awkwardness and craziness and my stimming! She thought I had abused drugs or something when we first met lol. I still kept going through the mental health system to find answers and therapy's but got absolutely nowhere, I am very lucky that since i have been with my wife I have been the best I've ever been!

We then had our little boy (now aged 3.5) and my wife started to notice him tip toe walking, so we went to the paediatricians and they diagnosed him with Idiopathic tip top walking and basically stop worrying! Kayleigh (my wife) started seeing more and more signs about 12 months ago and started to do research on Autism, the more she looked into it the more obvious it all became and she said to me, I think you need to read the symptoms for yourself! From that day forward I knew I had it (6 Months ago) and started the process of getting diagnosed and 2 days ago I got the official diagnosis and EVERYTHING has made sense OVERNIGHT! This is one of the best things I have ever done, I finally have the answer and can start to learn more about it and move forward for both me and my Son who will very likely get his diagnosis soon.

Sorry for rambling on lol
Matt

I did not know until middle age. My public school threw me out after 2nd grade and I did see a psych then. What diagnosis was given if any is not remembered. It was 1965 so a diagnosis of autism was very unlikely for a verbal person. If an Autism diagnosis was given considering my mom did not present as cold calculating, unfeeling nazi she was probably not told because the parents were blamed completely then.

That's me, and I was pretty miserable as a kid. Some parents believe informing kids would lead to some self fulling prophecy because of a label. The reality is that those uninformed kids internalize a lot of self blame and guilt because they can't be "normal". I had those issues, but I could never verbalize the feelings and social issues I had. I still have problems with this sometimes.

MjrMajorMajor, I totally relate to every word of that.

I wasn't told I had an autism diagnosis until I was in my late teens/early 20s (I'm not sure when). Yes, I actually was diagnosed with autism in the 1960s. I was also diagnosed with "brain injury-damage" aka "minimal brain dysfunction." I'm sure many people who would be Aspergian or HFA would have had that diagnosis in the 60s-70s.

I used to tell people that I used to be ret*d because I started talking at age 5 1/2. I thought I had brain surgery (I was actually only given EEG's). I was told that I was in a brain-injured nursery school. I was in a special school until 6th grade, then they tried to put me in "regular school" from 6th to 8th grade--I almost got expelled. There were no IEP's in those days. Then I went to a high school for so-called gifted underachievers, and did fairly well there.

I was labeled 'gifted', 'Most Likely To Succeed', and had insanely high expectations placed upon me.

The reality of my adult life has been one of epic dysfunction and unemployment, due to personal issues that my teachers stubbornly turned a blind eye to, because I was 'gifted'.