how was your diagnosis?

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hi. i think at first i have to point out that i believe that but dont know for sure whether or not i am autistic since i dont fully trust any selfdiagnosis (not even my own and i consider myself very rational and also wellread) and i never talked to anyone about this and never met a psychiatrist either, but its the only explanation that makes any sense to me so far. i am kind of an informationaddict so i know about asperger syndrom and am aware of fitting the "symptoms" for about 8 years now.

im sick of people not understanding it when i tell them that i am not able to do something and im currently thinking about seeking an official diagnosis because of this. i dont want to disappoint anyone or hurt anyones feelings but there are certain things i simply can not do and i also can not explain those things i cant do to people. they keep asking me why not instead of accepting it and id be relieved to have a short rational answer.

for example its quite common and usual around here that everyone has a driverslicense and my parents urged me to get one too (i dont even see the point why) and they even talked me into a few drivinglessons which were terrible. i can not focus on the street, direction, speed, people, the other cars, the map or idea where to go, roadsigns, trafficlights, turnsignals, my left hand, my right hand, my left foot and my right foot at the same time, especially not when its awfully loud and noisy and there is this newcarsmell and a driversedguy sits next to me and talks to me. driving is not just extremely exhausting but simply impossible for me within citylimits. i am even too nerdy to play videogames (stating that provokes laughs, obviously because saying the opposite of a wellknown or stereotypical association is considered to be funny, i know that, but im actually serious, too many colors, too fast, too loud, i can not cope with things like that), and i almost got myself and whoknowselse killed once, so i quit. my parents were very disappointed back then because they did not understand that it was extremely irresponsible for me to drive a car. its the same thing with when i say i can not have a boyfriend or a girlfriend because i can not have a normal serious relationship with another person. when i need to tell someone that they always react with a version of "of course you can, why would you not, you just have to learn this, dont be afraid, dont think that, dont be so pessimistic about it" but i am not afraid or pessimistic at all, i just CANT and this is true for deeper relationships of any kind. this is why i think it might help to have a medical diagnosis, maybe people can understand things like that then and will stop being sad about it and stop asking me about or wanting me to do things i can not do.

therefor: how was your diagnosis? meaning what did you talk about? how did you arrange meeting a psychiatrist if you did it yourself? how does the conversation with the psychiatrist work, ie were you asked a lot of questions or did you just have to tell things about yourself? can you ask what they expect you to tell them or do when you are there and how long it takes before you go there? do you only get a certain amount of time like 1h or something to talk and do they tell you when they know enough? if you decided to get a diagnosis as an adult how did you find an expert and how did you make an appointment with him or her? is it possible to talk to an expert just per email? do they have some kind of standard test or do they base their diagnosis on experience? how often did you have to go there if you had to? did they also ask you or advice you to get therapy? did you feel comfortable? did it help you to get a diagnosis? would you recommend it? do people understand it when you tell them that you are not able to do something they
expect you to do since you got a diagnosis?

id appreciate any detail of your diagnosisexperience as well as any advice or comment on this.

Liberating.

Confusing and somewhat surreal.

My diagnosis is very recent, however. This may change after a while.

It took seven hours but went by quickly. I did the test on a Friday and got the results back on the following monday. The whole thing was quick and efficient. It felt great knowing what was wrong with me.

My diagnosis was made quite quickly.
- Aspergers and ADD

I did most of the talking, the Hospital Psychologist was actively listening, seemed very at ease with the process and seemed genuinely intellectually engaged.

He made a few new connections with some of my existing dots and revealed a few other dots that I hadn't noticed before.
- The link between my sensitivity to noise and the extreme difficulty I have 'learning' in a classroom/seminar environment

I was relieved to finally get independent confirmation of something I have know for;
- 2 years (Aspergers)
- 15 years (ADD)

It's sort of complicated, and can vary a lot, depending on where you are and which expert you wind up with. Browse around the threads here for a lot of people's stories, and they're all different. In my case, I was going to the local Mental Health Center, state supported and paying on a sliding scale, for antidepressant prescriptions and talk therapy. I've known since forever that I am a cyclical depressive, and had a number of psychological theories as to the basic reason, but at least the right antidepressants on the right schedule _work_ for me. My daughter had taken a couple of basic Counseling courses in college, and she of course knows me better than anyone, and she suggested to them that I might have Asperger's. Nobody there was qualified to assess Asperger's especially in an adult, so they sent me over to the State Children's Hospital, and I spent the morning with a PhD lady who is an expert on it. She gave me one test (facial expressions: a book of pictures and I was to tell her which emotion was expressed by which expression), and talked quite a while, asking questions, and brining up memories: I was able to tell her some relevant things from my own memories and from remembering my mother's stories, such as being late tying shoes (second grade), and never able to catch a ball (still can't!), and no language delay, and high IQ, asked me whether I had any routines, special interests, etc. Basically all conversation, a morning's worth, plus she had notes from my psychologist at the Health Center. Then she sent me off to talk to her husband (also a shrink there) and talked to my daughter a bit, then called me back and said in her opinion I had Asperger's, and gave me her written report, which I took back to my local Center. They made sure that I knew that it was on the Autism spectrum, so I wouldn't be shocked by hearing it. It didn't cost anything: she said that it was part of her job when I asked, I suppose because a different State supported institution sent me. Others here say that it costs a lot of money, like over a thousand dollars -- I suppose that would be getting diagnosed by a shrink in private practice. I do pay for each session for Depression, and getting the prescriptions written at the Mental Health Center, but not much because of the sliding scale and because I'm low income. There's nothing much they can _do_ about an adult with Asperger's, but my Psychologist does help me with things about how NTs see things, as well as continuing to work on the Depression.
Check and see if you have a Mental Health Center system in your state. Social Workers should know, I think.
I'm told that in England you can't even get a diagnosis if you don't have a living parent or older sibling to tell them what you were like as a child. In my case, I could remember what she wanted to know about my childhood.

Well, mine was with a psychologist. It took several appointments, various tests, some are very weird. I personally thought we could have saved two hours' money and skipped the IQ test but it's a part of their standard procedure. I really don't know why we needed IQ for a diagnosis. Of course if my result was as high as I expected I might not complain, but it's much lower than my previous ones. English is my third language and I didn't grow up here, and the doctor knew that, we still went ahead with tests like English vocabularies, common knowledge which mostly focused on Western culture. There was also a memory test and a writing speed test. I don't really understand how those can be relevant to IQ. Memory maybe, but come on, how fast I write matters to my IQ? She told me that I actually did much better than most people on the common knowledge part. Most people don't know the circumference of the equator or how long it takes for the sunlight to reach earth. Big comfort. Those questions shouldn't be there at all. It's nothing to do with IQ and isn't fair to these "other people" either.

I found the psychologist by asking those who do autism assessment for children if they know any who evaluate adults. There aren't a lot of choices really. I didn't pick the cheapest one, but the most experienced one.

I didn't feel great after the diagnosis, even though I was expecting it. Feel a bit better now though. I have told a few people who are close to me, then I feel much better. I'm sure eventually I'll be glad I got it done.

That's interesting. I asked my mother when I finally learned to tie my shoes but she can't remember. I do know I couldn't learn that in kindergarten so my mother just got me sneakers with velcro. I don't think I tied my shoes until I was 14 and I did my 30 day evaluation. They made my mother get me sneakers for gym and wouldn't let me have velcro. I'm not good at catching a ball either and have a grade school report card packed away somewhere that has the gym teacher complaining that I can't do jumping jacks and something else I can't remember for sure but it may have been catching a ball.

Last edited by hanyo on 09 Oct 2011, 7:10 am, edited 1 time in total.

I don't know that either. Why would I even want or need to know? It has no relevance to my life.

I suspect that if I got my iq tested again it would be much lower than the 130 or 131 I got when I was a teenager.

I'm currently going through an evaluation, which is provided by a foundation, where I had to pay only a part of the total cost of one. I guess we could call it semi-official (as opposed to private or state/insurance funded). The actual evaluation depends on the input you provide, in other words, how they see you after the initial steps of the process. In my case the agenda consists of several sessions, and my parents are also involved.

1. Submitting a 45 page questionnaire of general personal information (health issues, education) and childhood development, based on ADI-R, I guess. Writing a letter in which I asked their help (wanted to know if I really have a disorder and if so getting some help).

2. First interview. General questions, "Talk about yourself"; "your life"; "why you asked help"; "what problems did/do you have"; "elaborate on some of them". One hour, two psychs, one in front of you on the other side of a desk, the other is in the opposite corner of the room, beside the camera. Most questions asked by the first one. An extra half hour interview with my parents, outside the standard process.

3. An ADI-R interview with my parents, 2 hours.

4. An IQ test with me (scheduled). The IQ test is supposed to give information about the pattern of sub-scales. The overall result isn't important.

5. 2nd interview with me (scheduled)

I guess all the interviews with me are administered according to ADOS. My main concerns are if they can provide me help to be social enough to get a girlfriend and have a family of my own...

You might find this useful http://www.afieldguidetoearthlings.com/

What did you talk about?

We discussed a lot of different things about what I found challenging at home, in relationships, at jobs, etc. We also discussed my childhood, teens years, family, etc.

How did you arrange meeting a psychiatrist if you did it yourself?

I found potential individuals on GRASPs website. I emailed several and chose the one that appealed to me.

How does the conversation with the psychiatrist work, ie were you asked a lot of questions or did you just have to tell things about yourself?

The dr led the discussion in the sense that they identified areas of discussion and then I told them about myself.

Can you ask what they expect you to tell them or do when you are there and how long it takes before you go there?

Prior to my meetings, they called me and we dicussed what would happen during the assessment. I scheduled my meetings about 2 months from when I contacted them.

Do you only get a certain amount of time like 1h or something to talk and do they tell you when they know enough?

Our meetings were scheduled over 2 days (about 8 hours). If they had needed more, they would have extended the appointment.

If you decided to get a diagnosis as an adult how did you find an expert and how did you make an appointment with him or her?

I used GRASPs website as a starting point. We made the appointment via email.

Is it possible to talk to an expert just per email?

No. In order to assess you they have to see you in person to meet requirements laid out in the DSM.

Do they have some kind of standard test or do they base their diagnosis on experience?

They used the AAA with me. To determine AAA they used standard tests and interviews.

How often did you have to go there if you had to?

We scheduled it for 2 days in a row.

Did they also ask you or advice you to get therapy?

Yes.

Did you feel comfortable?

Yes.

Did it help you to get a diagnosis?

Yes.

Would you recommend it?

Yes.

Do people understand it when you tell them that you are not able to do something they
expect you to do since you got a diagnosis?

No as most don't understand AS and I don't share the info with people I don't imagine woud understand.

When I was a child, Velcro hadn't been invented yet. There were loafers, and probably other sorts of slip-ons, but they tended to fly off if we ran, or trip us, so it was tie shoes. I remembered that one myself, because it was humiliating to be a "big" second-grader, and the only kid in school who still needed to find a cousin or a teacher to help with my shoes when they came untied, or had had to be taken off to get a piece of gravel out. When my daughter went to kindergarten, there was velcro-- however, shoe-tying was still a prerequisite, things on a list that they wanted the child to know before starting school. My daughter did learn that on time. That would have been before their fifth birthday, since at some point after that birthday they'd have been starting kindergarten. I did do jumping jacks as a Freshman in HS, in gym, but I don't think anybody ever wanted me to do them before that. I was, however, legendary for clumsiness. But I could read words at 2 1/2.

Kicking and screaming. I was not happy at all to be diagnosed with AS/autism.

.....don't want to talk about it. When I was diagnosed I didn't know what Aspergers even was, but I do remember so stuff during the diagnosis that still traumatize me to this day.

Through life I've been going through phases of hate for the diagnosis and appreciation, and right now I appreciate it.