So I was never diagnosed....

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Since I was 10 years old, my parents told me that I had an autism spectrum disorder. I struggled with this for the next decade because I refused to believe that I had autism. I was depressed and suicidal for a couple of years and could never admit to myself that I was so inherently different to my NT siblings.

When I turned 21 I went on a bit of a life changing journey, travelling around the world. I became at peace with the fact I had ASD and began to be (almost) proud of it.

I spent the last 6 months tracking down all the medical records of my diagnosis to learn more about my past. However, I found something interesting in the records. I was never actually diagnosed. In the words of the (two) doctors who tested me... "Aaron does not display enough characteristics to be diagnosed with ASD".

I don't know how to feel about this. Several years of my life that I spent depressed in denial and I was actually right all along. I am unsure what to say to my parents, I am angry about this.

Wow, I think I would be feeling a little angry too if I had found this out. I would confront my parents about it. I am not saying that you should or should not since I don't know your family but I would if it were me.

Well, from what I know having an autism spectrum condition and not having enough symptoms to be diagnosed ASD are not contradictory! Check out PDD-NOS. If you have some characteristics that affect your functioning but does not have enough for a autism diagnosis it can be atypical autism. About atypical autism>
• A high-functioning group (around 25 percent) whose symptoms largely overlap with that of Asperger syndrome, but who differ in terms of having a lag in language development and mild cognitive impairment. (Asperger syndrome does not generally involve speech delay or cognitive impairment).
• A second group (around 25 percent) whose symptoms more closely resemble those of autistic disorder, but do not fully meet all its diagnostic signs and symptoms.
• A third group (around 50 percent) who meet all the diagnostic criteria for autistic disorder, but whose stereotypical and repetitive behaviors are noticeably mild.

Hi Linatet,

Did you go on that drive?

aaronzx - unless an individual displays most of the recognised 'symptoms', to an unmistakeable degree, then there is no real difference between a diagnosis and a discussion.

It seems unlikely that your parents and doctors would have invented the possibility of ASD without good reason, and I would recommend going to your parents and beginning a new discussion. It is almost certain that your parents were extremely concerned for your well-being, and were looking for an answer then, just as you are now.

Why did your parents lie to you?

I can understand your anger. Big betrayal of trust there.

Sorry in my original post I didn't mean to write "doctors and my parents", it was supposed to just be "my parents". I will edit that.

I put forward the discussion to my parents and showed them the records I have but they still claim that I was diagnosed. The medical record I have is supposed to be my complete record but some evidence my parents have put forward hints that the government department that handled my request for information did not disclose everything (they're supposed to) or may have an incomplete record.

I now am going to contact the individual doctors the government used to 'diagnose me' and find any discrepancies between their records.

I feel like I am now back at square one, this is confusing. Basically I am giving my parents the benefit of the doubt and hoping there was a diagnosis because otherwise a lot of what I went through in my teenage years was for nothing.