Questions for those who have been diagnosed (as adults)

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I am 20 yrs old, and I have not been diagnosed with AS, but I am 100% sure that I have it. So my questions are as follows:

How did you go about getting a diagnosis?
What kind of things were you asked or did you have to provide etc?
Was it a long process?

Any other information is helpful.

I'm kind of terrified about what I'm expected to do to 'prove' that I have this.

And thank you in advance for your help because I know I'll forget later.

it wasn't too involved in my case, the psychiatrist looked over my psychiatric records, asked me about my life up to that point [noted my lack of social intelligence], checked my reflexes, muscle tone [he noted my clumsiness/lack of physical grace], joints, examined my body movements, my speech [he noted my odd prosody/monotone/volume], my memory, my comorbids [schizoid personality disorder/schizotypal, avoidance personality disorder, ADHD inattentive subtype, auditory processing disorder, OCD, tourettes]. he then explained briefly to me why he checked me as he did, then told me "it's my considered opinion that you have a preponderance of the traits of asperger's syndrome. sorry, there's not much i can do for you." it all took an hour or so.

wow, i wish it was that easy to get a diagnosis here. there is only one little place who can do it (i would have to drive hundred of miles) and it costs $400. needless to say i'm not getting diagnosed, i have just done the test here http://www.rdos.net/eng/Aspie-quiz.php

questionnaires (1-5, how often do you do this or that)
IQ tests
inkblot test (why are these still used?)
talk with me
talk with parents incl. about early history

Tests took a whole day, interviews separate days, diagnosis came a month (why that long?) later.

I told my GP that I thought I had Asperger's. She had been treating me for depression and anxiety, but my symptoms were getting worse. She referred me to a psychiatrist with whom I had two hour long appointments. The psychiatrist asked me a lot of questions. It was very overwhelming, but she did diagnose me with Asperger's.
In Canada there is no charge for this, it is covered by health care.

My diagnostic process was mostly made up of talking. There was plenty of borderline chit-chat that I'm sure showed lots of my autistic behaviour. All the specialists observations of my behaviour during the interviews and tests made it into the report.

I did some questionnaires but I sort of wasn't able to do them. I spent most of my time explaining why questions and instructions of those tests didn't make sense to me, didn't seem to apply to me, wouldn't work as intended and asked for clarifications. No fun.

I was diagnosed without going in for a diagnosis. I had been seeing a therapist for over a year when she mentioned it to me. When she started seeing me, she immediately noticed my odd body posture and gait. Over time, she started noticing a somewhat unusual way of talking and social awkwardness. She finally told me one day when I was telling her how I don't fit in in social situations. I was completely surprised when she said I have AS, but immediately started crying because I was so relieved. So, anyway, you could go to a psychologist and tell him or her you think you have it. They might recommend testing, which is done sometimes.

I took that online quiz but many of my "friends" (not anymore) mocked me about how it was a silly online test and I wanted to look cool and weird with this diagnosis.

So I looked up several places, I was referred to a woman by the local autism society in my town. I went to the dr and she interviewed me over several weeks.

I initially went in and took a 4 page list about every single thing that made me think i had autism.

We discussed my past, family history, education, etc.

I had to interview my parents to find out about developmental milestones. She gave me a specific list of questions to ask.

If during those 3 weeks she was not sure I wouldve had to do a full and expensive diagnostic exam, but she was able to confirm that I did indeed have HFA-- b/c I more than met every requirement in the manual---which was quite a shock bc i thought I would perhaps be just maybe aspergers MAYBE---not full hfa but then she talked to me about it and explained my issues. Hearing HER explain my issues made me realize it was a bigger deal than I thought.

I went to my regular house doctor and asked for a referral to a psychiatrist because I was in the middle of a 3 year depression that was about to get me killed.

I had 8 sessions with the psych and he came to the conclusion that I had A.S.D. traits. He forwarded me to our local Autism Centre for adults.

I had an intake there and they consequently decided it would be prudent to have a formal diagnosis done. This was planned for a few weeks afterwards. The diagnosis tests themselves took 3 consecutive days of mostly practical tests. Memory, special geometry, memory, language skills, and a range of other things.

They also invite someone from your personal life for an interview. Preferably someone who knows you well in daily life and can give them a deeper, independent insight into how you behave on a daily basis.

A week or two after that I got the diagnosis (High Functioning Autism) and they directed me to some courses I could follow as well as regular meetings with an Autism specializing psych to discuss any issues that might come up.

For the record, I was 28 when this happened. That was at the beginning of 2009.

Except for the ADHD, OCD, and Tourettes, the procedure I went through was pretty much the same.

I met with a neuropsychologist recommended for diagnosing ASDs, and after a background information meeting he agreed that it was likely enough I had AS that I should get a full evaluation. I then had a 4.5 hour evaluation with him, and then was given a diagnosis with report a week after that.



There was a whole bunch of tests and questions for me and my parents.

We had to give general background information, I had to feel out questioneers about general mental health and AS and ADHD things in particular. I had an IQ test, as well as another reading test, and such. The questioneers were like the online ones except I could ask him how I should answer in cases where it wasn't clear because of the question not being clear. The tests weren't anything to prepare for.

The background information had to come from both my parents and I and involved details about what I was like in school from elementary school through now, any other diagnoses I had, anyone I'd worked with in the past, general information of how I was like when I was young, whether or not I drive, why I don't drive, sensory issues... I think that's most of it. Most of the time was spent on the evaluation rather than talking to him, most of the information came from my parents.



One hour background meeting
4.5 hour evaluation (requires waiting on insurance accepting covering it if you're trying for that)
One week later an hour of going over the results.


It wasn't at all bad. He just observed me.

I would recommend looking for a specialist though. People who actually know ASDs are so much better at evaluating for an ASD than random psychologists.

I was already in treatment for Depression, which I've had for many years and am well accustomed to (I was 65 then), at my Mental Health Center, which is state-supported and charges on a sliding scale, and after my daughter decided I probably had it, she talked to my therapist and the administrators. There really aren't that many people around who feel qualified to diagnose adults, especially ones as old as I am, because we've learned so much over the years of how to communicate and get along reasonably well with others, that we've managed to "mask" a lot of traits. So the administrators there sent me 40 miles to the State Children's Hospital ("mental", frequently "retardation") to talk to a PhD specialist there. I pay for every appt at the Center (not very much, relatively), but when I asked the lady at the Children's Hospital how much and where I should pay for the diagnosis, she just said, "It's my job", and I didn't have to pay for it anywhere, because of the State people who sent me.



It didn't really take long-- about a half-day or less. All I had to provide was myself and my memories, plus she talked to my daughter a bit (my daughter was 35, and had had counseling courses in college). Most of it seemed like general conversation, though I'm sure she was observing me: one of the things she wrote down was "academic style", which I hadn't realized I had, and my "mechanical walk", which I sort of knew, and she asked me about daily routines. I know I told her about being late tying my shoes, because I not only knew that that was a diagnostic, but I _remembered_ it, for sixty years, because it was humiliating. And I _still_ can't catch a ball, because I never worked at learning that: I didn't care that I couldn't catch one. She did give me one test, a lot of pictures of the same face without any other cues around it, distorted in different ways, and asked me what emotion it was expressing (couldn't even tell if it was male or female!). Usually I didn't know! And I had always known that I was bad at remembering and recognizing faces in general, but hadn't had a clue that I was that dumb about emotions: after all, this was a test that was designed for _children_! She also mentioned that I do make good eye contact-- and I remembered learning to do that. I'm sure that there were other observations that she took into account.



Don't be scared: you don't have to prove anything, and I'm sure whoever does you will be a friendly, nice person. You might even find out that you don't have it! ;^) For me, it was a relief, but it was just because it explained so many things over the forty-five years that you haven't even lived through yet. I think I was about your age when my roommate told me not to walk like a Sherman Tank. That was another thing I didn't work hard enough at: getting more graceful, though it did hurt my feelings when she put it that way, another reason for remembering it.

Last edited by Sibyl on 25 Aug 2011, 7:22 pm, edited 1 time in total.

I went through 2 processes--hopefully most people don't have the need to.

The first one was an awful experience really. I got in fairly quickly, but the psych was SO disorganized (ie. missing appointments, not returning emails as promised, and not contacting my regular psych as SHE offered to do). I had a 45 minute interview in January of this year, was asked some things about Aspergers, and a lot of things not related to Aspergers (later found out they were trying to get me to a point where I would buy some anxiety-related therapy, even though anxiety is not my problem). After a few months of unreturned emails and a missed appointment entirely (she had me show up at the office AFTER it was closed, and denied that until I showed her the email), I was finally diagnosed with Aspergers on March 16th. Shortly thereafter, I asked for a report. My psych at school said I should have been given one as part of this process, so I asked the diagnostician about it, and she seemed confused as to why I would want one. She consulted the head of the clinic, and he was also perplexed and said they would write a little "summary" but would have to charge me 100$ for it. My regular psych finally got it out of me exactly what I did at this "evaluation" and I was told by her that they were likely correct; however, the evaluation was very incomplete and not official and I would have to get it redone somewhere. So, I paid about 500$ for this...and did not pay a dime for their offer of "a little summary".

I needed a report for student loan purposes, so I made a second clinic at another private clinic. I had to wait about just a couple months (I cancelled one appointment and had to reschedule), and finally got in this past June. I went one day with my father where we did the ADI-R. This is a standardized interview given to the parent, not myself, about early childhood development--what I was like as a baby, toddler, and child. Even a bit about present, but main concern was early development (since autism is a developmental disorder). They discussed speech, other milestones, and then typical autistic behaviours, etc. Already it felt more official. I went in two days later alone for the ADOS assessment. This was just between me and the psych and involved various activities and answer a few non-reflective questions (ie. they weren't like "do you have trouble making eye contact"--that was something she observed on her own. These questions were instead, "define sadness" and "why do people get married" to see how I dealt with emotions and understood relationships.) This felt much more official--instead of it being subjective and reflective on my part, it was my Dad's feedback from my childhood, along with her observations of my behaviour and my ability to do, say, and express certain things. This was a bit awkward for me, but definitely better because I know it was more official. The first place didn't do ANY testing WHATSOEVER. Anyway, a couple weeks later, on July 8th, I was diagnosed with classic autism (not Aspergers, and had the first psych done the ADIR and ADOS, I never would have been diagnosed with Aspergers since I do not qualify for it due to speech delays for one.) This process was more expensive. I paid about 1200$ for it. As they say, though, "you get what you pay for". Yes, it was more expensive, but it was worth it because it was done properly, and I will get a report (haven't received it yet, but should be getting it within two weeks at the latest).

Well, I was diagnosed at 15, but that's pretty close to adult so I'll answer about myself too.

It was kind of funny, actually. I self-diagnosed sometime around 13-14 years old (it was a gradual process) but since I was being homeschooled we didn't bother with an official diagnosis.

Then I went to high school for grade 10 and we talked to the school counselor about getting me a diagnosis, and she gave my Mom a questionnaire to fill out about me, then never bothered to let us know the results.

At the same time, my PTSD was worsening because the school setting reminded me of past bullying experiences, so my parents signed me up for counseling. During the intake exam, I happened to mention that I thought I might be autistic, and explained why (remember, we hadn't gone there for an AS evaluation, it's just that AS was my obsessive interest). The guy replied with an immediate diagnosis of PDD NOS.



Well, the school counselor got my Mom to fill out some kind of questionnaire. But the guy who actually diagnosed me didn't ask for anything like that, just listen to my verbal description and observed my behavior.



No, it was a couple minutes out of an assessment that also decided that I needed therapy, confirmed why I needed therapy and indicated that I was not currently suffering from depression. (I actually realized they were reading out the DSM-IV criteria for depression verbatim, and said so after the last question. Probably one of the things that made them think I was autistic.)

The whole assessment wasn't very long, though my time sense is really screwy so that could mean anywhere from half an hour to two and a half hours.