Autism suspicions kept a secret?

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I recently finally got up the courage to talk to my mom about autism. She surprised me by saying that growing up, they (my parents, doctor, and therapists) had suspected that I was probably autistic, but for some reason a diagnosis was never pursued (I'm guessing that it's because while I was a failure socially, I was excelling academically so they saw no need for special services?). Plus AS wasn't added to the DSM until 1994, and that was the year I was diagnosed with ADD so they were probably more concerned with that. Regardless of that, I still feel like they should have let me know!

I'm rather annoyed about this! Why didn't my parents tell me? Were they going to keep this a secret forever?

Were any of you suspected of being autistic, or actually diagnosed, as a child but your parents never told you??

My mom mentioned that she did sometimes think that maybe it was autism, but that she thought that autism went along with mental retardation, so she figured that couldn't be it. (Also because of somebody she worked with when she volunteered at a state hospital.. so when she thought "autism" she thought kid-in-state-hospital-who-takes-off-his-clothes-and-twirls-his-underwear-on-his-finger)
There were a few other things she just missed. One of my (to me) most significant stims, especially when I was younger, was this thing I do with my mouth where I push air out between my back teeth. When I mentioned that to my mom, she said she never noticed it-- and this was something I did constantly. But while it's very lout to me because it creates vibrations practically in my ear canal, it's very subtle to anybody outside my head.

So she dismissed it because she thought I was "too smart." Never mind the fact that I was the stupid daughter.

Yeah. My mom knew when I was a kid, and never told me. It caused me no end of trouble; most likely, the reason behind it for me was similar as it is for you--I'm good at schoolwork, and Mom equated neurological disability with mental retardation. She concluded that you could only be autistic if you were also developmentally delayed (technically, I was, just not in school); and that any other autism diagnosis was a fraud and a way to sell pills.

The disability stigma was a big part of it. Mom worked with disabled kids at school; and she tended to get the kids with the really obvious problems, from spastic quadriplegia to severe MR. She never worked with the mainstreamed kids, and apparently never realized that disability could be subtle and invisible, that someone getting A's in school but unable to keep herself clean unless reminded to do so could possibly be disabled; so she put me down as lazy, uncooperative, defiant, and an absent-minded professor. Apparently, my chattering on about the shape of the universe in my teen years totally blinded her to the fact that I couldn't hold a back-and-forth conversation with a kid my own age (to be honest, though, I didn't really think much about the existence of kids my own age, so I didn't really try to learn.)

Many people are hurt by the idea that "disabled means incapable of anything useful". This isn't even true of the severely disabled kids my mom was seeing, and that makes me kind of sad, because I wonder if she underestimated them. It's not just the people who get underestimated that get hurt, though; it's the people with very real problems, who would very much appreciate some help, but who don't look disabled enough and so are presumed to simply have personality or behavior problems.

My mom didn't tell me that one doctor said I was autistic until I was 15 and they never took me to him again. But she didn't tell me other doctors thought so too. She said it was only that one doctor that said it and he was just arrogant so I don't understand why they kept taking me back to the same place to the same other doctor. And yes I was diagnosed with it and then it got changed to autistic behavior when I was four or five because I had hearing loss. When I went in for testing again at age eight, I though it was to get me into my new school but I didn't know it was for a follow up for an update for my medical history on autism so I can be in a normal classroom full time. The doctor wrote he couldn't agree with the early diagnoses because I was too social. I guess his idea of autism was no connection to people and totally locked in your world, that's just the severe case. I had always connected to my parents except for when I was deaf.

I think the reason why my mom didn't tell me was because she didn't agree with the label and she didn't think I had it but she did tell me when I was eight I couldn't talk when I was little and I had ear infections and I couldn't hear. Then she told me I was violent with other kids and it was my way of communicating and I was a frustrated little girl. She also didn't tell me I had ADD or dyspraxia or sensory issues. She said she didn't know what was wrong with me. Then she told me of my AS diagnoses when I was diagnosed and mentioned my problems with balance and touch. I also didn't know I was on the IEP until I was 15 and I discovered I had been my whole life since I had been in school. I recall my parents having meetings after school with my teacher and aid and that was maybe the IEP they were having. I wasn't always with them of course when they had it.

This is somewhat analogous to my experience. I can remember that my parents had a several year-long fight with the school psychologist over whether or not I had a disability. Ultimately, they agreed to force me to participate in extracuriccular activities in exchange for the school not labeling me (their argument was that I was too gifted to relate to my peers and teachers, which was a true statement, in and of itself). The sad part is that they were ultimately hostile to my later suspicions that I was Autistic... This lasted until I was 25 and had been official for 4+years.

I am not sure how much of their unwillingness to accept my autism came from fears of social stigma, fears of having my academic/life options limited, their own problems with the establishment and/or their realization as to how similar I was to them.

My mother told me only this last year that they were thinking Schizoid Personality Disorder but wouldn't officially diagnose me because I was still teenager. This was years before anybody considered that autism could have some higher levels of functioning. It makes me wonder because they knew I had trouble connecting to people even when I was a very small child. If they won't dx a personality disorder until someone is of a certain age you'd think they'd wonder why it showed up so early.

I think a lot of people don't seek help because they see their kids as intelligent and don't want them labelled. I think my Mum kinda knew there was something not quite right but just buried her head in the sand and still does to a certain extent. C'est la vie...

I guess I'm quite lucky in this regard. I was diagnosed with AS at the age of 12. My mother saw I had problems from the moment I was born and did everything she could to find out what was wrong with me. I really don't know that much about my diagnosis; it was all done on my behalf when I was a child.

I know about being underestimated, though. I was sent to a special needs school and had no secondary education. I can write well because my natural aptitude is in this area but when it comes to Maths, Science or Geography, I'm hopeless. Despite this, I managed to get into university to study English.

My mother actually saw some signs of Asperger's in me at around seven years old, but everything she read had the severe social symptoms listed as well, and I had plenty of friends and no trouble socializing. Thus, my diagnosis was delayed until last December.

When I was little, I would count in my sleep, and my parents would joke about having "a little Rain Man". It cracks me up that they were actually closer to the truth than they knew.

Really? My mum told me I had AS at 14 and it's one of the worst things that happened to me cos before that point I didnt see myself as being hugely different. It completely destroyed my self confidence and my motivation for life. I started second guessing everything I did and I stopped trying certain things, assuming that I couldnt do them. I've been in and out of depression ever since it happened.

I would have found out about it anyway cos she's stupid and kept leaving stuff about it lying around. And I saw mention of it in the internet history so I guess it wouldnt have mattered either way...

So it depends on the kid, don't assume they all want to know!

Perhaps part of the problem is that parents expect stereotypical autism, instead of the extremely varied expressions we actually see. The young lady who is fascinated with horses and so shy she never speaks to classmates could be as autistic as the little girl who constantly buttonholes her classmates to talk about transistors... only because the second one is obviously odd, she gets a diagnosis and the first doesn't. (Unless she has my parents and is pegged "gifted" despite that school is the only thing she is any good at.)

Autism is well known; Asperger's less so; PDD-NOS almost not at all; and yet PDD-NOS is the most common autism spectrum disorder. If little Johnny is using TV commercials to communicate, lining up his toys for fun, and insisting on a strict bedtime routine, Mom and Dad may insist it can't possibly be autism because Johnny looks them in the eye, understands what they're feeling, and loves hugs. But that's an obvious case of PDD-NOS, with one major symptom group missing and the rest so dead-on autistic that any professional would call it autism without a second thought.

Most people don't know how a diagnosis is done, and aren't aware that almost every diagnosis can be correctly made with one or two missing symptoms because our bodies and minds are so diverse. That's what the -NOS categories are for (and they are used for physical conditions too, not just mental; if you scan down the ICD-10, you will see categories for "NOS", for example, "Chronic bronchitis NOS", which do not fit into the other categories listed).

I understand better what PDD-NOS is now after reading posts about the subject. I understand it is not autism extra lite. However I do not like the term. It sounds awkward and somewhat dismissive like something you put in a 'to be filed later' pile.

It was mentioned to me that I was autistic, and I have known it since I was about 10 or 11. I had intensive early preschool intervention. However, it was not talked about very much, and I thought very little about the diagnosis. I had speech therapy in elementary school and was treated the same as neurotypical students for the rest of my school career. In fact until a few years ago, I never really explored autism. However, I knew that I was very different from everyone else. I also remember quite a bit about my early childhood. Today, I am informally classified as moderate to high functioning.

I grew up in the 70s. My parents thought I was a "strange kid" but they had no clue what it was. They still don't. Today I would probably have been diagnosed early.

My mother did some research on mental illness a few years before I was diagnosed (aged 23) and thoughts AS was a strong possibility. I think this reassured her, as my brother is heavily schizophrenic and so suggested I wasn't. However she had a policy since she noticed my psychological problems (since about 15) not to mention them because she feared labelling them would somehow encourage them. Strangely, I'd finally discussed my psychological problems with her about a year before being diagnosed and she didn't mention AS. Given that getting diagnosed followed from seeing psychologists after my life's worst breakdown, one which would have probably been avoided had I known I had AS, I guess she really should have mentioned her thoughts on this matter

All of the above.

Fears the adults have tend to be experienced by the child to.

If everyone around the kid is frightened and confused, the kid is going to be frightened and confused too. This is why I still fear labels. I was being taught to fear autism. It was handled very badly and with minimal resources and expertise.

That's what happened to me.


I didn't see myself as 'defective' and neither did my family.
Neither did a lot of other people actually.

It was a shame that some people underestimated me from the outset.
They underestimated me academically a lot.

I still struggle, but I'm afraid of seeking help because of what happened in the past.

I know that the help will either try and 'shove me in a box' or be stigmatising.


I have my suspicions that people have been trying to 'help' me and have been exchanging information behind my back...and behind some other people's back's too, so as not to upset them. This just isn't on. I'm an adult now and deserve to know what's going on. I'm afraid that if I do try and find out what's going on, I'll get labeled again or people won't accept me.