How are people diagnosed with AS well into adulthood?

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This is for those of you who were diagnosed well into adulthood.

I was diagnosed with Asperger's at the age of 9. It was very obvious to my parents from the beginning that I was different, with major obsessions, strange behaviour in social situations etc. So how come it was such a very long time until you got a diagnosis? I don't see how you could have managed to cope through childhood and the teenage years, having to go through it like a normal person. Sorry if this makes you feel bad, I'm just curious. I'm also wondering if knowing it makes it worse because you know that it is AS causing your problems.

I haven't learned to cope in life at all, because in the end I know that I'll always have this stopping me. But those of you who are in relationships, married, with jobs, how on earth did you manage this??

I'm not diagnosed, but I've suspected for a long time and I'm really certain of it now:

I was 25 years old when AS was added to the DSM.

Also, I never coped like a normal person, I was just constantly treated like I was supposed to and failing as a consequence.

I am smart enough to weave my way through life, but I have always been on the edge of doom. That's a bit melodramatic, but I have always been two steps from some type of collapse, whether financial, emotional, professional or in relationships. I am a study in "almost" making it work. I have pretty much run out of energy to maintain the facade. So I am giving myself permission to be less normal and more at ease with myself.

I can't say that I have coped. Well, maybe I have coped. But I never wanted to cope, I wanted to thrive. I am hoping that embracing my autistic nature will allow a more contented approach to life.

Lack of awareness. It can very obvious that someone is different but things like laziness or other disorders are applied to the person. People are misdiagnosed as schizophrenic, bipolar, etc. Just because someone doesn't have the diagnosis doesn't mean they do well in life; being homeless as a consequence isn't unheard of here, certainly.

Or instead of getting their child evaluated the parents could not understand at all and punish them continuously. I think you have more faith in people than you should.

True that. I cope, but at a huge cost. The things I manage take everything out of me and what I manage is a menial job and raising an AS son as a single mother. I have little desire or energy for a social life.

All of this, too. It's pervasive, so it's not always easy to see from the inside just how one is different, especially with this kind of thing ingrained into you.

The diagnosis is a fairly new thing. If we were children and teens and adults before the diagnosis became available, we were known as odd or weird. I now know that I had a wonderful mother who did naturally what is thought of as social therapy today. And because I was fairly mild I could go to college though I had some severe problems with communication and depression and was even asked once to leave the program I was in. I refused and did graduate. In college I met my husband who expected me to stay home with the children, so that worked out well. I was fired from any paid job I held, so I am grateful to my husband for being a wall of protection around me. I am only recently realizing how poorly I would be doing if I were on my own.

In 1994, when the DSM-IV was published, I was 14 years old. Furthermore, I live in a rural area way way behind the times to begin with. How did I get by.... barely. Looking back now, it's miraculous I didn't either kill myself, or become detached from reality during my teenage years. I often think how easy it would have been for me to end up one of those homeless guys that sits there on the street muttering things to himself that no one else understands. My mother was my anchor. No matter what happened, I always felt she was on my side, and was there for me, even when the whole world seemed to be against me. She was open-minded enough to accept me as I was, and not try to force me into anything. Even so, I was suicidal multiple times in my late teens and early twenties. My father didn't believe in psychology so I was in college before I even got to the point I'd see a psychiatrist (it was the hardest thing I'd ever done at the time, and remains one of the defining moments of my life). Like many with AS, I sought treatment for depression. My official diagnosis was severe depression, social anxiety disorder, and mild OCD. Anti-depressants managed to stabilize my moods (I still take high dosages for anxiety), and counseling helped me to cope.

As difficult as that was, I learned a lot of survival techniques. It was a trial by fire if there ever was one. I learned to hide my feelings the way other people did. I learned to control all my behavior and speech to an extreme degree. Every word I said in high school was very carefully contemplated before it came out of my mouth. Every interaction was rehearsed in my head beforehand, and executed to precise detail in order to get the results I wanted (at that point, I just wanted to be left alone, and I more or less was successful at that). My entire social personality was an elaborate array of deliberately constructed false faces and disguises so I could protect myself from perceived dangers (bullies mostly, but I also came to hate teenage culture and felt disgusted by it). The good that came out of this is that I learned skills that translated into more positive areas. I learned that it's not just words that are important, but context and situation. I learned most people have a duality about them, where they are one person alone and a quite different person in a group. I learned to predict a lot of people's behavior by observation, which allowed me to spot people and situations that would pose problems for me and avoid them, and mask some of my natural tendencies when required. This process of self-monitoring and observation has become automatic over the years, so I don't have to think consciously or practice as much. You would doubt that you're talking to someone with poor people skills (I've had counselors and interviewers comment on that). Still, I can't adapt beyond the situation I've prepared for, so there's no spontaneity. I can react to changes within reason, so long as the context of the interaction remains constant. The biggest limitation, though, is endurance. After a few hours doing sociable stuff, I get quite exhausted. I actually do enjoy the interactions when the people are interesting, but it's exercise for me. A four-hour party to me is about the same as a four-hour hike in terms of how tired I am at the end.

Today, my biggest problem is that the working world isn't very well suited to me, because there's too much pressure to perform, which always destroys me. Ironically, my performance is pretty good, but unless people let me be and don't apply pressure, I can't realize my potential. This runs counter to the way most people's minds work. I have a part time job but I'm still living with my parents, so I'm not exactly well adjusted. I hope to one day meet someone and marry, what I lack in social graces I can make up for in loyalty, gentleness, and attentiveness. I also know there are plenty of full-time jobs I can do, but getting one is the problem (economy sucks for all of us, Aspie or otherwise).

Finding out about AS was an epiphany for me. When I read about the symptoms, descriptions, and the accounts from aspies, finally all the stuff about my life that was confusing and bewildering made sense.

A little something called the 1990's. A very small town. A Christian upbringing and a mother that didn't trust doctors.
I was extremely quiet, moody, strange, poor at school and just all round different.
The only reason I got diagnosed but I wanted to be diagnosed. I don't think my mum is the type to want be diagnosed just to know you have a condition.

I don't have a relationship, or a job nor am I married. So I never really was able to cope in life. Actually I found out I was so different because of a really horrible relationship. Horrible in that I didn't have a clue, not that it was abusive.

As a kid I was mostly obsessed with drawing. Then it moved onto collections such as The Lion King, an obsession with The Simpsons and an obsession with dinosaurs. I was never good at school. I was completely oblivious to the outside world. I showed no distress about not having friends.
I think I was protected a lot from the world so I rarely showed or knew I was different. I didn't have explosive meltdowns or shutdowns because I was usually in a safe environment.

I have no doubt I would be homeless (or worse, dead) if not for my wife. I so totally suck at normal planning type things (executive functioning?) I would have ended up a bankrupt, freaky looking, smelly mad eyed wanderer. She anchored me to life in a way that would not have been possible on my own.

I was almost 40 when AS went into the DSM. Obviously, aspies have always existed and we just were labled with social judgements rather than "diagnosis" (and still are). I seem to have flown by the seat of my pants, like a blind person in a big city, somehow managing to make a map in my mind of how to get by as best I could. Anxiety a constant companion. My parents both have very strong aspie traits, and were in their 60s when the thing went into DSM and never got close to seeing themselves or me through this lens. So they didn't even notice my problems more than a little bit and very ineffectually. All this was no fun. Much better to have a name for it now, even though it, and our understanding of this reality will change through time.

There was no diagnosis when I was 9, and even if there had been, my parents died around that time in a car crash, after which I lived with my older cousin, who isn't much more "normal" than I am. He took care of me, worked, and had a few friends, but was otherwise very similar, so he probably never saw me as very different. On top of that, our family were immigrants, so our differences might have easily been explained by that. What I remember of my mother, she was much like me as well.

When I was bullied in school for being a freak, I assumed they were racists, since they regularly called me racial epithets. When I was older and away from the backwoods, I assumed it was because I was gay. When I didn't manage to finish a degree, needed other people to get jobs for me, and lost every friend I managed to make (save one, who I now live with), I just didn't get it. I just decided that people in general were jerks and didn't like me for no good reason.

It wasn't until I randomly took this quiz that someone posted somewhere and scored as having Asperger's/HFA that it even occurred to me. And even then, my first reaction was, "What? I'm not autistic. Stupid internet quizzes." But then I started reading about it and realized I actually did fit the criteria, at which point I had to know if this was the answer to everything in my life.

If I hadn't gone myself, I never would have gone, because no one in my life, at any point, would have taken me. My family didn't even like regular medical doctors. On top of that, my income and health insurance status has been sketchy, at best, my whole life. (And this last point, by the way, is why I don't get the controversy over undiagnosed people, because if you are autistic, doesn't that make you more likely not to have money and health insurance if you're undiagnosed??)

This was one of my problems when I first really started to click with the idea that I had AS. I had no access to medical care and several month waiting list to get onto the state health plan. I also didn't know about available resources (such as Disability Lifeline in Washington state) that would expedite the entire process if a psychiatrist's evaluation suggests that you are at least currently unable to work, or that my own history would in fact suggest that I am unable to work.

But the first time, I just didn't have any idea what to do about it, and I knew self-diagnosis had a negative reputation, so I didn't go that route (and to be honest, I haven't committed to it now because I will have access to medical professionals very soon who can diagnose me).

Being brief and to the point....

1. AS not being in the DSM until 1994. Figure at least 10 years for the typical professional to "know" about the condition. Even then, they focused more on Dx for children, not adults.

2. Having "mild" AS means better able to cope. Most undiagnosed adults learned to adapt enough to get by. Since they fit not other "mold" with what symptoms showed, they never got a Dx for anything.

Many with AS who "coped" did not have a "normal" childhood or adolescence. Often they were very awkward and painful. They just learned to soldier on. If they were symptomatic enough, they were likely misdiagnosed with another condition that seemed to fit.

As other people have already noted, a label that doesn't exist cannot be applied. Some were already well into adulthood before it was added to the DSM. I was a junior (11th year) in high school in 1994. Had I gone around advertising my issues, it probably would have been recognized and diagnosed at that time. I didn't though. By that time I was already well aware that I was different, and learned how differences were treated by others. I never heard of AS until I was 30. As soon as I ready the symptoms, it made many many thing make sense for me. I sought out a professional experienced with AS and my suspicion was confirmed with the diagnosis.

My questions to the OP are:
Had you not know what your difference was, and nobody around you did either, do you think you/others would have been less forgiving of your differences?
Do you think you would have been less forgiving of your own mistakes?
Would this lack of an excuse/explanation caused you to try harder?

Without a descriptive label to place blame upon, I think many of us blamed ourselves. It was the logical thing to do... everyone else blamed us too. Doing so took it's toll on my self esteem. I became a social robot, with a store of pre-programed actions and reactions based on trial and error. But still, my reactions to novel situations that didn't have a pre-programmed response, illustrated time and time again, that I was still very different from others. Now that I know, I don't blame myself for poor reactions to those situations, but in the past, they provided more fuel for a fire of negativity.

With all that said, I can't honestly say who's had it better. Maybe us late to be labeled are stronger because there wasn't an excuse, so we just kept trying. Maybe people that were identified in childhood are due to services that thought them social skills earlier.

There is a certain irony in my not being noticed by the mental health system in any profound way. I probably would have been put in anti-psychotics. In the 70s there weren't very many and the side effects are almost as bad as what they treat. At least my brain is intact.