Frustrated with Diagnosis Process

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I had my second appointment with a mental health care professional yesterday for diagnosis. Some of the things she said about aspies seemed very suspect to me. She told me that the social security administration would likely question a diagnosis of AS for several reasons. First of all, I have a bachelor's degree in physics from a good university (albeit with a low GPA). According to her, most aspies struggle so much in school that completing university at all is uncommon, but especially with a major like physics. Really?!

Also, she thinks that my limited interest in other people is unusual for aspies. She said most of them want to connect with people, but are just bad at it. This idea seems so wrong me. The posts on this website alone about people who want to spend lots of time alone, spend less time with girlfriends, less time with family, are endless. There are certainly people who want to connect with others, but they often have NO friends to begin with and want one or a few, not dozens. That isn't much different from me.

Also, I lived in a foreign country for a year with my girlfriend, and supposedly that is WAY too huge a change in routine for an aspie to deal with. I wish it could be taken into account that I rarely left the house, the change was softened by the fact that we lived in a beautiful, quiet, unstimulating place in the country (so I was happier and more relaxed than I had been in the U.S.), I had my usual new-place-adjustment period of several days before I could sleep properly, the trip gave me a huge migraine (like most trips that are longer than half an hour), and I was constipated for the ENTIRE YEAR, even while I was on medication for it. Contrary to the usual idea of responding to change with meltdowns and other emotional outbursts, I think the effect on me is more inward–migraines and exhaustion and other biological malfunctions.

It seems like maybe the doctor (she is a post-doc doing a residency, actually) has limited experience. She says she has diagnosed lots of kids, but only one adult, and the adult was ragingly obviously ASD with severe anxiety and had tons of documentation of his issues from childhood. That's another thing I wondered about: I didn't realize that it would be such a huge problem that I do not have any school or medical documentation from childhood. She said that since aspies struggle with communication, it would be odd that teachers somewhere between elementary school and college hadn't noticed and created documentation of learning disorders or at least difficulties in class. Also, she expected medical evidence of sensory issues. I thought plenty of people with ASDs made it through elementary school without this stuff, especially those who grew up before ASDs became widely known (I was in public school from the mid-80s until I graduated high school in 1999). I understand that medical evidence is important. I don't know why sunlight has always been uncomfortably bright, but didn't start giving me migraines until I was an adult.

I can see now that it is even harder than I thought for an adult to get a diagnosis. I can deal with that, but I wish more was known about how ASDs manifest in women and girls. Every time I read information about this, I find things to which I can relate, but they are somewhat different from the standard picture of ASD symptoms. She asked me a lot of questions about my life during the first visit, but during this second visit it was decided that she could not continue trying to diagnose me (part of that is because her residency is ending soon). So we didn't really do any diagnosis stuff besides the one-hour interview, she didn't speak to my mother, so no light has been illuminated on anything and I'm still wondering about things. She thinks I have a personality disorder.

she is off base. plenty of aspies get a degree, many in math and science.

You said it yourself; she's only diagnosed one adult with ASD, and they were blatantly obvious to her.
If she's so inexperienced at diagnosis in adults she shouldn't offer this service.

First thing I think you should do - and this is my opinion based on the limited information you have, so check this against what others say and other medical opinions - is find a more suitable and more qualified person to do the diagnosis WITH you, not of you.
If they aren't working with you, developing a rapport and validating you, you can't expect them to be able to understand or care about you, much less diagnose you.
I know rapport is difficult with doctors and strangers for Aspies, but this is part of what they are supposed to do, to reduce your anxiety and help you through the difficult process.
If they are all hung up on reports, specific behaviours and trying to fit you into some stereotype to meet a diagnosis you're dealing with some that doesn't even want to listen to you.

Temple Grandin is a college professor, and she is a well documented and highly regarded person with Autism, so to say people with Asperger's rarely have tertiary qualification, your doctor must have their head in the sand.
There are also plenty of others like her, have a read of Different Not Less by Temple - this will give you some good examples of people who have achieved remarkable results even if they had not been on the spectrum, all the more amazing that they are!

Just because you've learned some coping skills and strategies to actually function in the world doesn't mean you are not an Aspie and do not struggle.
The biggest obstacle I can see that people on the ASD spectrum face is that others can see our behaviour but don't or can't reconcile it with what goes on in our heads.

Many of us are older than you and yet to be diagnosed, as there was just no possibility of being diagnosed in our childhood, as Asperger's was virtually unheard of where we lived as we were growing up.

As for the living in a foreign country; it would have been a different story if you went on your own, but with a girlfriend, and hardly leaving the house for a year etc - that just screams out Aspie to me!
It's not just that you left but why and what you left that can make a difference too.

It may even be worth reporting the "mental health care professional" to the relevant authority, as they have clearly not shown you the respect, courtesy, and compassion you deserve when going to them to be diagnosed - you didn't do it for fun, you did it to confirm a self belief about your condition to try to make your life better; all she has done is make you anxious and frustrate your efforts.
You shouldn't leave a medical professional's office feeling worse than you did when you walked in there, and she shouldn't be afforded the opportunity to do it to others in the future.

It's kind of worrying/pathetic how some professionals can be limited by their (lack of) experience and not realize the extent of it. I briefly interviewed a psychologist years ago (was looking for someone to do an assessment) and among other odd things she said that people with ASD usually also have conduct disorder. It turned out that all of her experience with ASD adults came from her employment with the criminal justice system.

In my opinion a diagnosis for Asperger's in adults is more of an art than it is science. Can I ask why do you want a diagnosis?

Well, part of this is for my SSI claim. I already have qualifying diagnoses, but I want to make sure that I am accurately diagnosed. I was bothered by the fact that sensitivity to light and noise were not reflected in the personality disorder diagnoses I've received. I also want peace of mind. I have gone back and forth in my mind for three years now wondering, and rejecting the idea that I have an ASD, and then finding more evidence that I have symptoms, and back to wondering again. I've had shrinks tell me I seem to have it; others say I don't seem to. The wondering is driving me a little crazy.

Less importantly, I find it very interesting, as ASDs, giftedness, introversion, and personality disorders and the relationships between them have become a small research interest of mine. I agree that diagnosing an adult is a rough road, but I hope that going through the process will be instructive, so I figure that I may as well satisfy my curiosity since I'm already fitting some of the criteria. Also, now that I've started, it feels bad to quit before I see the process through to the end.

mmm well I think a diagnosis for Asperger's can have some unintended consequences. Plus, I think that if you go to 10 psychiatrists only a couple will say the same thing, all of them will want to prescribe drugs for you, and have you come back in two weeks.

Such as what, besides people misunderstanding and thinking I'm crazy? I've already been in the military and kicked out, so I'm not worried about that, either.

I believe that many helping professionals will not let go of you until your insurance runs out. They lead you into dependance. You are their bread and butter, their meal ticket. You don't go to one to get fixed, you go to get dxd and managed.

Just my grumpy old man opinion.

just saw some diagnostic criteria for autism in another thread. one criterion can be " an absence of interest in other people." so your counselor is off-base on that, too.

This is why you need to carefully "shop around". I would recommend choosing a Psychologist who only does testing (to eliminate that conflict of interest).

starkid - What neuropsychological exams/tools/instruments were included (as part of your evaluation)?

Good luck! I hope you find what you are looking for!

I'm a grumpy middle aged man and I concur...re: health professionals

OP that doctor has spouted a load of rubbish to you.

Plenty of Aspies get degrees successfully.

I lived abroad for a few occasions for months at a time. (It was actually harder returning home for me). Like you say, many Aspies avoid socialising like the plague.

Don't ever see anyone without proper expertise or qualifications for an ASC diagnosis, particularly as you are female, make sure they are up-to-date on the latest research about females and how females present .

Don't let any doctor string you along and be clear what you are looking for at the outset, tell them you are specifically seeking an assessment for AS and nothing else.

I had a similar experience, you need to find someone with more experience with adults, and ideally with AS females specifically, as above.

It seems some professionals get confused on the concept of spectrum and differentiating between AS, HFA and LFA.

Based on my own research, sounds like a lot of BS to me.

Have you checked out www.help4aspergers.com? There are a lot of resources for women on that site as well as links to a blog and books about aspergers in females. Definitely doesn't sound like that provider has adequate experience diagnosing adults. There is a list of providers on that site that are known to have experience diagnosing adults and, especially, females. I am lucky enough to live just over an hour from one of them.

I also have very little documentation from childhood. We moved frequently when I was a child, and I was home schooled for much of the time because of how transient our lifestyle was. My parents were opposed to a lot of modern medicine, and we saw a chiropractor when we had problems. When I was around nine, we moved to Europe, and I was either home schooled or attending a tiny international school with teachers fresh out of college and no disability services.

I see that you are close to my age, so it is also pertinent to point out that aspergers was not added to the dsm until 1994, so many of the "symptoms" that are watched for in young children would have been missed or ignored when we were younger. I remember my mother repeatedly lecturing me about not being shy and "putting myself out there" to make friends. I was repeatedly scolded for refusing to shake hands with people and for not looking people in the eyes when they were talking to me. I think one of my biggest hurdles to diagnosis will be that my parents are not on board. They have never been supportive of my attempts to get therapy in the past because they view it as me judging them for being bad parents and become very defensive. Luckily my husband is very supportive. Once I started showing him a list of symptoms in adults, he was convinced.

I have lived all over the world, partly because I was taken there by my parents, but also I moved and lived places by choice. I found life much more enjoyable and manageable when I lived outside of the US. The culture here (especially in the south where I have lived the last few years) is so egregiously extroverted and social, and I have never fit in. I recently started a new job and have over 120 co-workers whose names I am trying to memorize. I also recently returned to school. I love my new job, but it is less predictable than my previous job, and the constant change and being sometimes pulled away from my team and sent somewhere else on 5 minutes notice has been causing my stress level to sky-rocket.

I am seeking a diagnosis so I can get adequate therapy, and also so I can decide if I should continue in my current profession or find something more suitable to my needs.