Questions for those diagnosed as an adult

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I have some questions for those of you who were diagnosed with an ASD as an adult. There may not have been very many of you, but I hope there will still be enough to answer.

I'm 30 and hope to seek a diagnosis now that I have health insurance, but I have no idea where to begin. I do plan on seeing a psychiatrist or psychologist that specializes in Asperger's though. Preferably Asperger's in adults. If I can find any near me.
I'm not sure if I should tell the psychiatrist and therapist I see for my anxiety that I plan on getting tested for an ASD, or if I should just keep quiet about it in case they try to talk me out of it. I've read about others with social anxiety (like me) being told that their problems are due only to that and I know that's not the case with me. My therapist did bring up Asperger's at an appointment though, asking me if I thought I had it (I told her yes), so that makes me think maybe she'll be more open to me getting tested than my psychiatrist may be.


1. Where do I begin?
2. How did you go about getting a diagnosis?
3. Do you have any tips for me?

Please add anything else you think would be worthwhile for me to know.
Thanks

That is a very good question.
I have the same problem.

1)A thing to start with could be Asperger groups that would most probably know a place where you could go.
(Although dont expect people that are similar than you)

Then I heard that some people went to hospitals with autism department,
that normally treat only children but of course know about the problem.

In the states there should be specialized units also for adults

2)If you feel yourself as aspie, then I think there is no reason not to get it.
Then you are officially accepted as one. And get access to programs.
But that doesn't mean you have to use all the support you can get after that.

3) If I knew I would be happy. There is a heavy thinking and I hope also reprogramming going on in my head now.
That really sucks.

Well, maybe a few things. The situation that you are in now is really really important,
because it will make this process either easier or much worse.

Try keep your socializing at least at the same level as before (For me that wasn't possible)
for me to have meaningful contact to others is very important and I dont have problems to be with others
Although now I feel bored by many things and bored as ever before,
result of the mental state I guess....

If you can, try to keep out of that black hole that opens up in front of you.

Try to keep the some order in your life. Dont accept too many changes in your life at once, if possible

Tell your parents and brothers and sisters, they might be affected, too.
And knowing it is I think in the long run better than just wandering around wondering about yourself

And, ...

there must be tons of others like us, just they dont know.
It is possible to recognize who has some "spectral" properties.
I think people I liked had some kind of that properties, at least sometimes.
I knew already that they are special, but of course not what it was about.

Just would like them to know as well. But, when I was born there was no such thing as aspergers
And there are not many specialists in that, either (apart from ourselves )

That's now from my perspective, yours might be a little different

Ok I think I got something wrong here.
You are already quite long here, so you know all that stuff.
Sorry

In regards to getting a diagnosis I would suggest to go through a psychiatrist or psychologist who can diagnosis AS. I self-diagnosed myself nearly 3 years ago after a life of problems with socialising. I knew something was wrong with me. I found a doctor who specialises in diagnosing AS and she has AS herself. I had no health insurance so had to save up to get the diagnosis but it worked out that I only had to attend 2 sessions to get my diagnosis.
It cost me less than $1000 for both sessions cheaper than consulting a psychiatrist or psychologist. The lady that diagnosed me has been in private practice for years and does diagnosis for children and adults on the spectrum.
I would advise you to talk with your mother about getting diagnosis and consult a professional. Write down your symptoms ie trouble with reading facial expressions is an example. You will need to explain the symptoms and traits of why you believe you have AS.
You should see if you can find an Aspergers social group in your area too once you get the diagnosis too as this can put you in touch with like minded people

I was diagnosed later in life. I will tell you the route I took. I first contacted a university (one that had a very good Psychology Dept) nearby and asked them if they could recommend someone who specializes in Asperger/HFA diagnosis. Most universities are very cutting edge in this area. They referred me to somone who specialized in Asperger/HFA for 20+ years. I had to wait 4-5 months to get an appointment. I can't tell you what it cost as my insurance paid for all of it. but as a general rule, most universites charge a lower rate.

I'm just going through the process of getting diagnosed right now, at the age of 39, so that I can get some accomodations at work under the ADA.

I called the 'Behavioral Health' department of my HMO and asked them for a referral to a psychologist or psychiatrist who had experience with Asperger's or Autism Spectrum Disorder in adults. They walked me through a long check-list of questions that seemed mostly about making sure I wasn't suicidal, and then set up an appointment two weeks later.

When I went to the appointment, he asked me some questions about my 'symptoms', how they affect me personally and professionally, and a lot about my childhood. Then he gave me a form to fill out for next time, one for my partner, and one for my parents to fill out. He would have preferred to interview my parents, but they live on the other coast. He also suggested that, if anything else came to mind as we were filling out the forms, that I write them down so I could bring them up next time. My next appointment is on Tuesday.

I just have to pay a $25 co-pay per session, and it's been pretty painless so far.

Interestingly enough, both my parents and my partner were worried that I might be judged or discriminated against, by having a diagnosis, even though they agree that I'm definitely on the Spectrum. But according to HIPPA regulations, the doctor and insurer can't give any info to anyone unless I give permission. I think that these accomodation will be really helpful to me, so I can keep doing a job that I love.

I would try and request to be tested by some sort of neuro-psychologist, as they are more methodical in their approach where as psychologists i find kind of just throw darts at a board and hope for the best. Joke...bad one but neuro psychs are more keen to recognize patterns in the brain which is typical of aspergers or hfa imo.

Good luck...?

It may be difficult and frustrating....you may have to go through some sort of gauntlet of people who are wondering why you would want the label as an adult, most psychologists seem to think that as you become an adult the symptoms/problems associated with aspergers magically disappear...

I'm 30 and found out only a few months ago. I'm going through this 2 day evaluation/diagnosis to make it official. I already have SSI/Medicaid for the bi-polar.

Problem is no one in my area really diagnosis it as an adult. At my first part of the evaluation they were asking my mom about classical autism symptoms, and I've explained to them many times I'm here for an Asperger/Autism evaluation.

They started talking about diagnosing me with "crippling anxiety". Well sure I have that and can go to therapy maybe if Medicaid covers that. But I need it on paper to help secure my SSI and to be able to explain to family members why I am the way I am. Most of them think I just don't care about anyone but myself since I'm so shy and don't like to go to family events.

Speak to your doctor about it.

Ask your doctor to refer you to a psychological specialist for a diagnostic assessment. If they are being stubborn or refuse to, be persistent.

My doctor seemed reluctant to pursue the matter,so I wouldnt take no for an answer.

However i live in the UK so for people in other countries the route may be different. I had to join a NHS waiting list for a year to speak to someone that could diagnose me.

Be persistent, and when you finally get your assessment be completely honest.

If you recieve a positive diagnosis be sure to take advantage of all support services you can get access to, if you are lucky enough to live in a country with any.

I agree with what others have said so far.

I would be careful though about telling your family that you think you have it - it really depends on how you think they may react. Since AS is genetic, some members of your family may have experienced similar problems, but some may not be ready to deal with that aspect of their lives.

When I found out that I might have it, I made the mistake of telling my family first thing. Some of my family members were supportive, but others denied that I was any different than normal, because my reasons for having it may have hit close to home for their own lives. It is even more worrying if your family becomes a part of the diagnosing process, and are unreceptive to the news. My mother was a part of the diagnosis process, as she was asked a few questions about my childhood. I suspect that if I hadn't told her about AS, she would have offered more clues about my developmental abnormalities and socializing difficulties than if I had not told her about it. Thankfully I was still diagnosed, but only because the psychologist had felt that I was a fair and accurate reporter of my past.

Now I am not saying that all parents are like this. Mine just happened to be especially unreceptive to the news, and looking back, I wish that I had handled it with more tact. It is still a conflict between us today, and has ruined my relationship with my parents.

How old were you when you decided to get diagnosed? Did you have to pay for it?

I was 18, and I found the psychologist through my university. I was on social assistance to pay for school. Since I went for a psychological assessment, it was $2000, but after the psychologist suspected a social disability, she told me that she would have to do a series of other tests, and it would cost more. The $2000 was the limit that the social assistance program would pay for psychological services, and paid that in full. It was around $200 extra, but 80% of that was paid for through my university health plan, so I had little to pay for out of pocket.

I've heard though that there is one psychologist in my city that will diagnose AS and have it covered by OHIP. He is at the centre for addiction and mental health in the city.

Actually, I was 16 or 17 when I initially wanted to get diagnosed, but I would have been last priority if I went through the school board, so they recommended for me to wait for university. Some people suspected AS, but my family was convinced initially that it was just a learning disability at first.

Last edited by deltafunction on 02 Sep 2012, 6:56 pm, edited 1 time in total.

Thanks for the info. I already have an appointment at the centre for students with disabilities to talk about getting a psychological assessment done. I went to the disabilities seminar on Saturday at the college and they were saying how OSAP might cover some of it and there's also some other plan with a sliding fee scale that I could look into if all else fails. I originally called a psychologist in Pickering and they said it would cost me $2500 so I'm kind of glad I'm a student now. I also have student health coverage so we shall see I guess.

Try calling the autism society in your state. They are experts and i believe their prices are more reasonable than what others have suggested.

http://www.autism-society.org/