How are people diagnosed with AS well into adulthood?

Post Reply New Topic

I was never diagnosed with AS, however, I was never mistaken for normal -- not really. My parents are both somewhat socially odd/ quirky themselves, especially my Dad.
However, as early as preschool, my teacher was noticing problems. She saw that I wasn't interacting with the other children, that I had a tendency to space out, and my motor skills were lagging across the board. My tendency to have massive crying fits (meltdowns?) may have caused some concern as well.
In any case, my preschool teacher told my parents that she had concerns about me, and she recommended that I should be evaluated for learning disabilities and such. I was evaluated, and my results flummoxed the psychologist conducting the evaluation. Before the written evaluation was released, the psychologist told my mother that my performance on the evaluation was "erratic." I tested as well above age level in some areas, and well below in others. The psychologist wasn't sure what to make of my results, as it was rare for children to present with such uneven skills. This was the mid-eighties, nearly a decade before AS was added to the DSM. As I was a female presenting with advanced verbal skills, no one was about to consider the possibility that I might be on the spectrum.
Throughout elementary school I was on an IEP, and identified as having learning disabilities that impaired my abilities in the areas of attention, organization, motor skills and visual processing. In fifth grade, my IQ was tested, and there was a 52 point gap between the verbal and performance scores. My evaluator was deeply bewildered by this claiming that he had never seen results like that, and did not know what to make of it. He opted not to average the scores, as he recognized that the full scale IQ score that would result would be meaningless under the circumstances.
It was also recognized that I had significant social difficulties, and some strange sensitivities and mannerisms. My tendency to be obsessive regarding my interests, and to go on and on about the same thing was observed by the adults in my life as well. This was still the prehistoric times, before AS was added to the DSM, and no diagnosis was attributed to these traits.
When I was a child, at least one person who evaluated or worked with me (I'm not sure which) told my parents that my social impairments were likely to become increasingly apparent as I got older. My mother never wanted me to know that this was said about me, but my Dad once inadvertently let this slip.
At the end of my elementary school years, it was determined that I was managing reasonably well academically. My Mom was providing me with a lot of support behind the scenes, but her role in my relative academic success was not considered. The fact that my social, organizational and motor skills remained abysmal was also deemed irrelevant. My academic performance was regarded as acceptable, thus, transferring my IEP over to the Junior High I would be attending was deemed more paperwork than it was worth. My IEP was thrown away, and I was declassified from all special services. This took place in 1993, one year before AS was added to the DSM.
Thus, I was never diagnosed with AS. However, I also never passed for normal as a child, and I proved quite talented at stumping the professionals from an early age.

Last edited by OuterBoroughGirl on 19 Dec 2010, 12:07 pm, edited 1 time in total.

Simonono,

Have the responses to this thread answered your question? I think everyone that has responded has done so honestly. I hope it's been helpful.

j0sh

I was diagnosed at 42! I had all of the same symptoms that you describe... Very strange obsessions as a kid (I was repairing TV sets and old radios at age 9, when my peers were playing ball, etc). I never had friends, and was the nerd. I didn't have any learning problems in school, but I was considered disruptive because the other kids didn't like me, and I was bullied a lot. I was diagnosed (incorrectly) by UCLA as paranoid-schizophrenic at age 10, (which I later learned is not possible to diagnose in a 10-year-old), and subsequently I was diagnosed with just about anything and everything in the books. I was mis-medicated as well, which didn't help! I was taken out of public school, put in various private special schools, and even locked up in the nut house at age 10 for 7 months. I guess nobody had heard of Asperger's in 1977.

How did I cope? I was miserable and alone as a teenager. Luckily I had turned my electronics special interest into somewhat of an after-school career, and kept busy with that, and then went into that full-time when I graduated. I never did have friends my own age, and honestly I still get along better with the over-65 crowd, just as I did when I was as young as 7. I have no idea how to dress or what kind of hair cut to get, unless I look to see what others are doing. I guess I have strange body language (and I wouldn't know there is any such thing as body language, had I not been told of it). The problem with that, which I had in the past considered to be just bad luck, is that any time I get stopped by the police for a burned out tail light, or whatever, I wind up getting held for all kinds of questioning, until the cop gets angry and frustrated that he/she "KNOWS I'm guilty of SOMETHING, but can't finger it". That is a curse, and it also causes me to be virtually unable to go to a store and write a check or pay by credit card, since strangers (store clerks, et al), think I'm a crook. I've never stolen anything in my life, and I don't lie to anybody, so I don't deserve that treatment but I can't seem to avoid it. This seems to be a very common problem which Aspies face daily.

My recent diagnosis of High Functioning Autism (or Asperger's), which is in debate, came after my wife and I had been seeing an excellent therapist for several years. (I forgot to mention that I married a former Special Ed teacher who is blessed with an understanding and appreciation for "different" traits, or I'd be single). The diagnosis was easy as pie, as I fit just about every symptom perfectly. Fortunately, I had been considered A.D.D., and am taking meds for that, which fortunately is the same medication as A.S. & H.F.A.; Adderall & low dose of Prozac.

I could only write bits & pieces here, but the bottom line is that for anyone out there who has A.S. or H.F.A., and is not diagnosed, it's a frustration that will not find any comfort until the diagnosis is made, and some answers become clear.

Charles

Only by the grace of God.

(Nothing to do now but to sit back and wait to be attacked)

Basically, I seemed 'normal' until puberty.

From puberty until about 23, however, I hardly seemed to develop at all emotionally (though everything was normal physically).

God knows how, but I somehow got a fairly good, albeit boring, office job aged 23 (even though I was emotionally only about 11-12 at this point). After getting this job I even managed to pass my driving test, get a car, get an apartment and even girlfriends (mainly through faking being normal). However, I couldn't sustain these things, and bit by bit everything unravelled

I spent my thirties unemployed and living with my parents. I was very depressed and anxious at this point (unsurprisingly).

Age 40 (4 years ago) I saw a documentary about Aspergers (incredibly, I'd never heard of it before, and barely knew anything about Autism). I knew instantly this was what I had and started researching it. I told my psychologist I believed I had it, but he was sceptical. Eventually, after much persuasion from me (aided by tons of evidence) he finally conceded I had it. However my GP, who's otherwise a good guy, still doesn't really believe it. lol Though, of course, he has no plausible alternative explanation.

Over the past few years everything has, finally, started to fall into place. I've now started my own business doing something I've always wanted to do, which involves my only real talent as a child, ironically (so I've come full circle, i.e. back to 'normal'). I'm not making much money yet, but I'd rather do this than anything else.

My only regret, strangely enough, is missing out on a great adolescence. I can accept everything else.

Thanks loads everybody . I did not realise it wasn't an official diagnosis before 1992. I am in ways proud that I am different, but it makes me sad wondering about the kind of things I could have done at this age if I was like the rest of them. But I can't change what I have, I am just looking towards the future, and getting through these awful, awful teenage years.

Like you, I was thought of as strange and obsessive in childhood and it was quite obvious to everyone that I was different. No one really knew what to do with me because I wasn't the stereotypical case of autism so I didn't receive that diagnosis. The only thing they could think to diagnose me as was 'hyperactive' because I moved around a lot. Nobody had a catagory for me at that time so I went undiagnosed but it was very obvious I was different and I didn't pass for NT. Maybe on good days I could halfway pass but not entirely.

"It is a capital mistake to theorise before one has data. Insensibly one begins to twist facts to suit theories, rather than theories to suit facts." - Sir Arthur Conan Doyle, in the voice of Sherlock Holmes (I think it was in "The Adventure of the Speckled Band", but I could be mistaken - it might have been "A Study In Scarlet").

As a kid I was diagnosed at times with ADD and at other times as having depression. It went back and forth and I eventually gave up on seeking help but my family kept going to therapy sessions (family therapy). While I was in the army, a doc that my mom was seeing who was familiar with my history posited the idea that it could be AS. My mom in turn told me. At first I thought nothing of it but upon returning from overseas and trying to restart a civilian life stuff just didn't add up. One day I was bored and on the computer and decided to do some research on AS and became convinced that doc was right. That was a cpl years ago. But it wasn't until this month when I joined WP that I realized just how much of the way I am is attributable to my AS. How that helps me cope still remains to be seen as this is still relatively new to me.

They did not diagnose for Aspergers when I was first considered for special education in 1975 when I was 5. They slapped an ADHD label on me and threw me into special education classes and tried several times to have me medicated for adhd. I have to admit I never heard of Aspergers syndome before seeing a daytime doctor show which talks about different medical issues. The one day I watch the show they were discussing the autism spectrum everything they said about Aspergers seemed to describe me. I then told a friend of mine that is HFA I think I am autstic so he gave me the phone number of Autistic services in Buffalo so they sent me a list of doctors that test for autism spectrum disorders. The doctor told me that he knew from the first interview with me that I was somewhere on the spectrum, So after a 7 hour test I was found to have Aspergers at the ripe old age of 40. The doctor who gave me my diagnosis said to me that there where no signs of me having ADHD they put me in special education for no reason so my education was essentially deprived. I now wonder what would have happened if I was in normal science classes. I did well in them while in special education but I did not study for the classes but still managed to get the high 80% to low 90% average. I feel screwed over by the education system who under educated me and allowed the other students to torment me for no reason.

Thanks for coming back. Consider that you know early, and this can help a lot with coping strategies, treatments, educational accommodations and the like.