Did your parents not tell you?

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My parents, while very open with me for the most part, and never actually lying to me about anything, failed to disclose certain firm diagnoses to me at various points, including both my IQ and my Asperger's. Both were assessed early and repeatedly. For the former, when I asked, they would only answer "very high"; regarding the latter, it fell under their umbrella of "learning differences." I never got a specific answer for why, from my elementary years through my years at a prestigious private high school I was diverted from my regular classes for both gifted sessions and what I must call special education classes.

I was having a phone conversation with my father a few years ago (I believe it was 2005) and he mentioned my Asperger's diagnosis. I knew, of course (from memory), that I'd been to psychiatrists and specialists since I was 2 years old (that's my first actual recall of testing and sessions). They later explained that they didn't want me to be arrogant about my IQ nor held back my Asperger's, which I assume must have come in later years as such a diagnosis wasn't common when I was two (1986). But I could be incorrect.

I moved away to go to college, and when I came back to this city,the doctor my parents had found for me happened to be the business partner of my high school doc. They chose him because he also had specialization in transgendered patients; he's also gay like I am, but I do not know whether they knew that. He already knew about my AS; it's in my file, but none of my other doctors said they knew. Maybe they assumed I did (their treatment of me would support that).

I don't know whether my parents made the right choice or not.

Has anyone else experienced anything similar?

I have a feeling my mom doesn't tell me everything about myself. She did tell me I have AS from the start when I was diagnosed. But she didn't tell me what other labels I had and I didn't know I was diagnosed with autism until I was 15 but it had been removed when I was little maybe four. She never told me I was on the spectrum, I had to find that out myself. I didn't know AS was on the spectrum until I was 15. When I heard about autism and was learning about it, I was finding out things they do I did myself so I wondered if I had it too and my mom said I didn't (she doesn't see AS as autism) so I eventually found out AS was a form of autism and no wonder I had characteristics.

At the direction of the school board, I was taken out of Grade 2 classes on Tuesday afternoons, back in the early 1960s, and driven by my parents to the mental hospital in the nearest city, for evaluation. I never learned exactly what the diagnosis was, although the result of the evaluation was that the school board sent me to the school across town to take three grades in two years. This happens to coincide directly with when my father started to beat me for not being "normal." I can only guess that the doctors and the school board thought I was some kind of genius, or possibly even autistic, but I'll never know. I have no idea how developed the study of autism was in the mid-1960s. Anyone whom I could ask about it is dead. Whatever they learned was something that so shocked and disgusted my parents that they felt it was necessary to punish and humiliate and mistreat me until I left home at the first opportunity to escape them.

I had extensive testing done at a hospital when i was young (10ish) I cant remember the exact details but i remember balance tests, image tests, interviews and observations of my interaction with other children. I never really thought anything of it and it was explained away lightly at the time by my mother. A few years later (mid high school) i remember finding a form from the hospital saying i had mild autism. I dismissed it at the time as i didnt consider myself a ret*d (teenage thought). The diagnosis has never been followed up by my parents or discussed with me that i can remember. I guess it just got put into the to hard or embarrassing basket.

I first learned about what Asperger's was when my mother told me about it last year around august. I'm 25 and she told she's known about it since I was 18. Now that I understand my quirks and what drives me I can take aim at those areas of life I need to improve on. I would have really liked it if she had been straightforward with me.

I am 99% certain my parents had me checked. The response in those days before asperger's existed here would have likely been "odd but not autistic."

When I put two and 2.1437.. together it was too late to ask, but the only things I was ever told was I started out left handed and my writing was incurable by 2nd grade. But - knowing them - if I had been formally diagnosed with anything they would have said nothing unless and until I got institutionalzed [for evidence, see my sister].

My Mom and Dad knew and didn't tell me -- I had a childhood infantile Autism diagnosis, and they had it adjudicated for adult child support when I was 14 in their divorce.

But my Father remarried and did not want to tell the step-mother because he wanted more kids, and didn't want her rejecting him for genes that cause Autism. Also, both of them together didn't want to pay for my adult support, so they made a very sophisticated series of trust and housing transfers with the Autism support money my Father owed me under my parents divorce decree. My Mom didn't want her career ruined by being labelled a "Refrigerator Mother" (she was in Masters then a Ph.D program back then), and also both of my parents did not want to be criminally prosecuted for failure to hand me over to authorities that in almost every state in the U.S. forced institutionalization on Autistics. So I got dumped into the mainstream schools and my Autism hidden from me and everyone else publicly, left pretty much to sink or swim with not a lot of help from anyone. That has pretty much been my life.

I always knew I was very different, but it was not until after my Father caused a TBI in 1992, when I made my Mom dig out their divorce papers so I could look at them myself, that's when I discovered the adult child support adjudication that was hidden from me all those years before. I was in shock. Neither one of my parents told me about it. But, my Mom did finally tell me about the childhood diagnosis before she died. She got to the point she thought it was hopeless for me to be Autistic in an overwhelmingly unforgiving and mis-understanding World. She committed suicide over it. I will never forget the conversation I had with her the day before she died.

My IQ was a matter of record since the age of 6.

AS wasn't formally recognised until I was well into adulthood.

I think gifted/autistic would have been beyond their comprehension (not unlike most NTz)

I dunno about my parents but I do find it a little strange that it took my high school counselor four whole years to consider the possibility that I may have Asperger's and told my parents that I should be diagnosed. I remember having cried to her since Freshman year that I had difficulty making friends and considering how often I met with her and that she recommended that I joined this club she ran for students who had difficulty making friends I'm thinking maybe she never heard of Asperger's until this freakin century! But you would think that someone in her field would've picked up on the signs right away. bleh

It's not that they didn't tell me, it's that they had no idea I had it or ever heard of it. I didn't hear about Aspergers until I was 14.

Even half a year before the diagnosis, my parents told me that I was going to be investigated for AS.
The day I got it, they said it without a doubt.

I had a very similar experience. I was diagnosed approaching four, but when I suddenly started speaking in sentences my parents (my father mainly) decided that the doctors had to be wrong. I remember doing an IQ test when I was seven, then retaking it a week later. I found out a long while later from my mother that my first score was so high they didn't believe it, hence the resit, and the second score so low they didn't know what to think. (I remember that I didn't answer most of the questions on the second test, since I considered it boring to have to do the same kind of tests twice.) Despite that, I was put up two grades at school, so I must have impressed somebody. I was reading Mark Twain and Charles Dickens at seven.

My father still won't tell me what my original score was, since he thinks it might inflate my ego. He tells me it was higher than his registered IQ (which is over 160). Part of the problem is that he didn't want any competition to develop between myself and my brother (who is NT by the way.) My brother's IQ is 150, and he's a respected professional in his field, quite brilliant. They also took his IQ at seven, again twice... despite his dyslexia they bumped him up a year, and nobody told him his IQ till he finished his A levels. It was a teacher who told him, when he had considered dropping out of education, believing that he was stupid. Again, lack of honesty in our family led him to underestimate his abilities, and could have cost his career. He's a scientist, I tend more to linguistics. I was always considered the "brainy" one, and was expected to be a success... what a turn up for the books that turned out to be!

My mother, in retrospect, was very proactive and supportive of my autism. She taught me, for example, how to feign eye contact, and used to role play with me, to teach me social interaction. She obviously educated herself about autism, and came up with ways to help me. Sadly she killed herself, so I can't talk to her about any of this. Apparently she was also very bright, when she was in a mental institution they registered her IQ as 147... and this was while she was on drugs that she felt "made her stupid."

So, yes... the fact that they "never told" us has had quite an impact on the way we've developed as a human being, and determined our relationships with others in the family. From my point of view, here's how it effected me. My mother, who was never able to really open up to me, tried to help me, but couldn't help herself, my brother who was always made to feel less than me, and even now has self esteem issues, my father who always wanted me to outgrow my diagnoses and prove him right, to whom I'm such a disappointment...

It's sad. Life could have been so much simpler if the truth had been known.

It makes me feel sad that some of you have had such depressing lives.
I do not know what it is like, my childhood was, and still is, nice.
I do not think my mother really knew what it meant and I did not know either.
But I was diagnosed with PDD-NOS because of lack of clinically significant rigid behaviour, though scoring handsomely in the other categories, so I cannot relate to your situations.
A teacher proposed this was because of indifference towards my surroundings, but my mother disagrees.
I find that comment interesting, however.

My mom knew immediately, apparently, when they added Asperger's to the DSM-IV. As an OT who had worked with many autistic children, she had a high chance of being right even without the multiple professionals who later confirmed her suspicion. But she didn't do anything about it; in fact, that was the year she took me out of mainstream school for good and either home-schooled me or put me in a tiny private school where nobody would catch on (the school was entirely run by one couple with no other teachers, and neither knew anything about autism or psychology). Mom deliberately hid my probable autism from me because she believed that autism meant permanent, total, inescapable disability, and she couldn't reconcile her "intelligent" daughter with that stereotype.

I should have been told earlier; it would probably have saved me the episodic depression caused mostly by high stress levels. I was socially isolated and thought it was my fault; thought I was lazy, undisciplined, and immature; and I was totally clueless about how to handle sensory overload. Eventually my self-injurious behaviors escalated to the point that I had to be in the mental ward twice--only after that did a psychiatric nurse-practitioner (this is someone who is between a registered nurse and a full-fledged psychiatrist) recognize that I was autistic. She clued me in, and that was when things started to get better for me. Several psychiatrists, psychologists, and counselors confirmed her opinion. I'm still disabled; but now that I know what I'm up against, I can actually work with my autistic traits instead of blaming myself for supposed moral failings. (Not that I don't have those too; but true moral failings can be fixed because they're a matter of choice! What a relief!)

I was told pretty much as soon as I was diagnosed so I'm lucky I guess, I wouldn't want it to be kept secret from me. I'd want to know what was going on, if it weren't for being told early I wouldn't know how much I now know about people, because I started reading up on body language and now I can be pretty good at it, if I wasn't told until last week for example I'd still be clueless.