How are people diagnosed with AS well into adulthood?

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I was 14 when the DSM-IV came out, but it was a whole decade later that I found out the truth. Up until that point in time I had come to the conclusion that I was just intended to be the odd man out in life.

I had never put much thought into searching out answers for myself. I was told back in 1990 that I had ADHD and thats what all my problems rooted in.

But given the sudden attention that the autism spectrum got shortly after I found out in 2004, I don't think I would have had to wait much longer than that before I realized the truth about myself.

Well I wasn't diagnosed in adulthood, and I am probably the odd one out because though AS did not exist in English medical literature when I was a child, I was certainly not overlooked, and I had much of the same accommodations that children with AS have today, minus social skills training. When it was realized I had AS, no tests existed for it. You just had a man or woman sitting there with your file and a pen mentioning AS every once in a while.

To diagnose adults with AS today, they usually take a history, do family interviews, and administer a few different tests, one of which asks the testee to answer various questions, to which they may chose options indicating whether it was true only as a child, only as an adult as a child and as an adult, or never true. So that is rather nice that they were smart enough to take into account that people with AS are dynamic individuals who can learn to overcome some of the issues they struggled with as children.

Upon learning that I had AS, I was a bit upset to be honest. I just felt a bit offended that I was different enough such that it was called a syndrome, or disorder. However, at the same time, I knew it would be silly to deny that it made sense, because I had known all long that I was very different, and in the end, I think knowing helped me because I was never really to articulate in what ways I was so different from the perspective of the rest of the world, and knowing allowed me to focus on those issues and attempt to improve myself along those vectors.

For example, eye contact. I didn't know that it was such a big thing that I didn't make it, so I worked on being able to make eye contact, and now can usually do so.

I'm now relieved of the frustration of trying to explain myself when others demand I do. I can say I have AS if I really need to,and explain about that or tell them to go look it up. I don't have to hassle with them nearly as much over why I "can't" do something seemingly ordinary, or why one thing could possibly stress me one another (worse thing in their mind) does not.

So I do think knowing was very beneficial. Of course there is always the fear that ignorance individuals will try to use such things against me. These are the critical "If you can't do that, then how can you possible do this?" type people.

The answer is always "It's not the same," of course but some people are really so stupid as to not be able to realize that.

Well, your parents knew; so did mine. My mom knew very well I was autistic--she was just in denial and refused to get me evaluated because in addition to being autistic, I was also a gifted child and she believed firmly that disability meant you couldn't be good at anything. So, instead of getting any help, I was called "lazy" or "rebellious", and was twenty years old before I was diagnosed. By then I had been in the hospital twice. So I can't say I learned to cope... I am learning now; it's slow going, and I will probably always have a disability due to autism; but I will also probably eventually be able to support myself and maybe take on foster children (if prejudice against autistics doesn't stop me from qualifying as a foster parent).

My diagnosis as a young child should probably have been classic autism; I've lost the Criterion II traits, though, so now the best fit is PDD-NOS. I'm actually diagnosed Asperger's, because without my childhood history, that was what fit best when I was first evaluated. So I just say I'm autistic and leave it at that.

[This turned out a lot longer than I intended. I'd say just read the first and last 2 paragraphs, if you don't care to slog through the whole thing.]

Well, for one, AS didn't exist as a diagnosis until I was 27. I was also a very quiet kid who got good grades. And, I would usually shutdown a (though not so badly that it looked too strange) rather than melt down or have other behavior that would've been seen as a discipline problem. My parents also hated psych/-ologists/-chiatrists/etc., and would never have allowed me to be put in front of one. Also, I never 'look' depressed, even when suicidal, so no teachers or school counselors or anyone else had a clue.

My parents are also oddballs with various ASD traits themselves, and are remarkably oblivious to odd behavior. (I also had no siblings to be compared to.) That was good when I was very young, but when I got older it became a problem since they were of no help in trying to understand the world/people and why I was having so much trouble with it. They've said there were parents in the neighborhood who would say, "normal kids don't do that," but my mother would always brush it off.

Despite my parent's obliviousness, though, when I was very young (4-5?) I did somehow get the notion that people shouldn't see certain things. I.e. I was a big-time hand flapper at that age, but started holding it in until people were out of the room, or turning my back so they wouldn't see it (which probably didn't work as well as I thought, come to think of it).

High school was a nightmare, but I never looked depressed to people. Also started having some OCD stuff (intrusive thoughts, some 'rituals') flare up then, but I didn't know what it was and thought it meant that I was insane. So, that was further incentive to keep my mouth shut and try to act normal. In those years I was afraid that people would find out that I crazy and then the men with the big butterfly nets would come and take me away.

My grades went to hell then, but I was perceived as a "smart kid," so all that lead to was being told "you're not applying yourself," repeatedly. No one had any clue how miserable (and often suicidal) I was at that age.

At 19, I'd been out of high school for 2 years. I had gotten lucky and had a job in which I was left alone to work for most of the time (electronic construction). I was also attending the local junior college. At that time, I started pushing to do (learn to do) things that I knew I needed to be able to do in order to survive as an adult in the world (such be able to interact with grocery store checker, my boss, and such (I was too terrified at the time to even check books out of the library, since I might have to interact with the librarian)). I also realized a number of other things I had to work on: smoothing out weird vocal intonation, comprehending speech faster, generating speech faster, supressing rocking and weird hand movement (stims, but I didn't know what they were). (Never quite got to the advanced topic of having friends, though.)

It's hard to put into words the amount of stress that was, but I kept it at that pitch for about the next 6-7 years. I wouldn't even 'turn it off' at night at home -- I thought of that as 'slipping back into dysfunction.'

As I engaged in this intense 'normalization,' though, I started having some subtle cognitive problems. And by the end of the 6-7 years they weren't subtle anymore.

I managed to get accepted into a pretty good university, and took on an ambitious major. It was one that involved a ton of work, so there wasn't much time for socializing, but that gave me the excuse that I was too busy to worry about that much, anyway. So, no friends made there, either, but I did get basic survival stuff down well enough.

But the cognitive problems kept getting worse, and I was constantly exhausted and near passing out a lot of the time. Luckily, I managed to graduate, but despite the fancy degree I couldn't (cognitively or physically) do jobs that I did before college. I scaped along from jobs doing electronic tech (low level) stuff, to working in a mail room sorting mail. Eventually, I couldn't do the mail sorting job, and passed out in the parking lot one night. I went back to work a week later, passed out again, and then filed for Social Security disability.

Luckily, the physical stuff showed up on tests, and a neuropsych work-up also showed significant results, so SSDI/SSI came through on the first try. I was about 30 at the time.

So, by trial-by-fire (as others have said), I learned to cope with a lot. But the price has been steep. When I hear people saying, "hey, the world doesn't care, so you just have to suck it up and adapt," I very much understand; I said that to myself a thousand times. But, having lost a fair bit of my intellectual capacity and physical health, I see that that attitude is not the end-all-be-all. There are limits that are real, and they need to be respected -- respected not just by oneself, but by society as well. Yes, society is not likely to give much of a crap about that anytime soon, but it is ultimately the only real answer that includes everybody with such difficulties. People should not be expected to burn themselves out.

And, as a final note on this too-long post I consider myself pretty lucky: I didn't end up in the looney bin, or homeless, or in jail, or a lot of other things I've heard people on the spectrum describe going through. People should not be expected to go through those things, either.

Learning from experiance, reading, and figuring out what to do different next time and working on things like dealing with change.

Sometimes I wonder if the milder your condition is, the easier and sooner you overcome it and adapt easier and the more normal you appear. The more severe it is, the longer it takes for you to learn and adapt and overcome it. I have noticed in the youtube videos how they sometimes look awkward vs the other aspies who appear normal so I figured the milder they are, the more normal they appear and the worse they are, more different they appear you can see it in their body language.

I was 12 when diagnosed and I was worse then but I have always been mild. Mom was able to explains things to me even before I was diagnosed and I go "oh I see" and get it when I didn't understand something or the hidden rules. But even she didn't know then what was wrong with me and just knew I needed extra explinations to get me to understand.

My speculation has been the reason why it's taken older aspies to learn and figure things out late is because there was no internet then to read stuff and the fact they didn't know they had AS so they didn't know what they were missing out on. You can't learn if you don't read about your own condition to see what isn't normal and what normal people do. I was in my teens when I started reading about it and if you lack self awareness, you aren't going to know you have that issue unless someone points it out to you. I learned pretty quick. Now after coming across this condition, some of them feel gypped because they missed so much and if they knew then, they would have know what to change and it might have maken their lives easier then if they knew. They just had to learn late.

I was also one of those gifted kids who often got the "you're not applying yourself" speech from teachers. That's another good point. If you were seen as smart, there couldn't possibly be any problem other than your laziness.

No offense and it is a fair question. I was 32 with 2 kids by the time the diagnosis came to light. Honestly, we were just "weird, loner" kids with ZERO support systems like exist today. I am not sure that was such a bad thing though as we were forced to integrate and come up with adaptations to some degree. There was no "excuses" like you might have today with diagnosed kids. Of course there may have been many missed opportunities for me due to my lack of support systems. IDK... There is good and bad in both I think...

I was unofficially diagnosed in graduate school. Before that, I was described as a "puzzle" that did not fit diagnoses available at the time. I lack the "hearing voices", hallucinations, and paranoia of schizophrenia. The only "wild beliefs" I have are all science related and backed up with math and description that others can understand, and recently, also commercial interest. I lack the superstitious or magical thinking of schizotypal, and I lack the ahedonia of schizoid personality disorder. Yet I have a long-standing lack of motivation and ability to socialize with people. I'm described as uncommunicative and I need to be alone a lot.

Last edited by sgrannel on 18 Dec 2010, 7:51 pm, edited 3 times in total.

This was me. I was supposed to be "gifted" (and I may be, I don't know) and this meant I was supposed to be capable. Not just the apply yourself speeches, the buckle down speeches, the try harder speeches from teachers and parents, but also an abusive parent who was hellbent on punishing me for everything I did wrong in his eyes, and that was a lot of things.

I got that a lot from some teachers so I half assed an IQ test once so they'd leave me alone. In light of my current scores I wish I could say I was half assing them now,,but no.

I'm personally glad I wasn't diagnosed as a child. Even though I was academically successful, my common sense was low. In a way I'm glad I didn't have much common sense. I didn't have enough sense to believe it when people told me I didn't fit in and wasn't acceptable as a human. Ignorance can truly be bliss at times. I didn't see any limitations, only differences, and I was convinced that I could find solutions and coping mechanisms for them. I could always sense that my experience of the world was far from the norm, but, kept the belief, for the most part, that I was unique, not defective. Most of my life I could sense I was living on the edge, and did everything to keep from falling off.

I was fortunate to get a diagnosis as an Adult. In my case the key piece of evidence that insured my diagnosis was a developmental delay in speech. If you have high functioning Autism or Aspergers there are many coping mechanisms to employ. The problem is they require a tremendous amount of energy and effort. A constant do or die attitude in life may take you higher than you can ever imagine, but it can also wear your mental and physical health down.

To me the hardest part of the diagnosis was admitting there was anything wrong with me after I had worked so hard to feel like I was part of the world for 45 years. In many ways I'm glad I lived life on the AS. I'm fifty now and sometimes feel like I have the energy of a 90 year old, but on the other hand I felt the same that I did at 22 until the age of 45.

AS was not an official diagnosis in North America until 1994. I was in treatment and diagnosed with serious depression in 1993. I even did a very brief stint in hospital at that time. Finding out later in life was a relief, but did not really justify what had gone on in my life in earlier adulthood. I found that it was easier to cope by being alone, so I took jobs like security guard and night cleaner. Getting diagnosed doesn't really change anything. The same problems that exist before (diagnosis) will remain after. It is just something that has to be lived with.

I wasnt diagnosed till I was 21, back in 2004, it was a hard pill to swallow.
It was a worry, I didnt want too look like a freak to my peers, as I said in my life story, 2004 was a turn around year for me, it took me a long time to accept AS enough to live with it but it does not worry me, one of the reasons I'm here is to see how people here with AS and share each others jorneys with this AS disorder.

At the time of the diagnosis in 2004, I wasnt very socially able and developed a obession with printers, from 2001, as a way to learn how to repair them, however over the next few years the obession died down, and from 2004 onwards I have become more socially able, getting out of my shell and become more bold.

One of the reasons I am here for is too encourage Aspies to get out of their Aspie shell, it is a very thick shell that every Aspie has, and with the right tools they can crack this shell, tools like finding the right peers, having therpy, and realizing that they are the same as everyone else.

When people don't know what a condition is (or think they know but don't truly understand it), then their mind does something really odd when they see someone, even the most "obvious" sort of person who "ought not to be looked over". What their mind does is it finds some other category to put the person in. Then later on, their mind remembers the category, not the actions of the person. They remember an idea rather than the raw sensory data about what the person did. They remember "that girl was crazy" rather than "that girl went around spinning and flapping her hands and putting her face really close to shiny objects and flicking them back and forth". It's really that simple. Even if they know what autism is, it doesn't mean that it's the first thing they think of when they see someone who fits it exactly. And virtually nobody fits the exact media stereotypes.

And all of this is besides the fact that Asperger's wasn't a diagnosis until recently, and there's a long lag time between the diagnosis existing and all the doctors knowing enough about it to diagnos it. I was diagnosed at age 14 in 1995 (and with autism, not AS) but these days I'd have been diagnosed in much younger childhood, infancy really, because these days people know what it means when a child stops talking after they already spoke a little in infancy (and may even know what it means when some of the earlier signs happen). And that's despite the fact that autism was in the DSM since the year I was born, and I wasn't that non-obvious (but people remember "crazy" or some other idea rather than my actions themselves... well some people remember my actions and go "oh well that makes sense" and other people remember the idea and go "that doesn't make sense").

And if I were diagnosed today in infancy, I bet I might look at someone identical to myself but 30 years older, and ask them why they weren't diagnosed in infancy if they were "really that autistic". It's all about how people relate to ideas versus direct observations. Autism is an idea, autistic traits are direct observations, and before people understand enough about autism to get the idea of autism from their direct observations, they get other ideas and remember those ideas, not the direct observations. It's complicated and abstract but that's how it works.

i was misdiagnosed bipolar as a teenager.
i was in my twenties before AS became a diagnosis. by then i was outside of the school system, no longer in my parents' care, and uninsured. i never even heard of high functioning autism until i was thirtysomething, and initially was under the impression the only person with it was Temple Grandin.

please disabuse yourself immediately of the notion that those who are not diagnosed or who did not get diagnosed until adulthood are in that position because things were easy for them.

consider yourself lucky that even if things are really difficult for you, at least you don't have to spend almost forty years trying to figure out why.



i don't know how i did it either. i nearly offed myself.

I guess I'm just a lot tougher than you want to give me credit for being. I grew up around a lot of unkindness. That unkindness would have hurt me even if I didn't have AS. In some ways, my AS protected me--it kept me from growing up to be an abuser an dcontinuing the cycle of abuse.

I was also an extremely smart kid and I could figure things out on my own. I came up with my own solutions oftentimes. I learned to be more self-reliant that way. I really don't envy kids who get dx'd early on--you grow up in this mindset that you're person with a burden called "Asperger's Syndrome". I didn't, and I am glad of that.

When I was dx in my late 20's, I was a very self-possessed person by then. I had been an outsider all my life, but I had learned to just do my thing and not worry about fitting in. So my dx was not so much about my identity as it was a tool to better learn about myself. I have since grown to think of AS as part of my identity now, has I can see a lot of positive things about it.



You see, I didn't grow up with such a negative, self-defeating mindset. I knew I was different and I loved being different, even if other people weren't kind to me. I saw no reason why I couldn't be innovative and curious and figure out ways to cope with how I was different--and so I did. Life wasn't scary for me. No one told me "You have AS--you're doomed and you should be afraid!" Life was an adventure for me--I was always learning how to socialize, learning about my emotions and inner self, learning to relate to other people.

I don't think AS will stop you. You can stop you, but not AS. If you want to listen to the negative portrait of AS from people who don't have AS, and let that deny you opportunities to live your life, that you're choice. But I don't recommend it.