Completely frustrated trying to find a Dr. To see me

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OK,

I live in Missouri, next to one of the top 4 hospitals in the USA, and can't find a freaking M.D. that has any experience with aspergers syndrome to see me.

The one that did agree, his secretary had to put me on hold go check and see if they did AS diagnoses, after I argued with her that I got their name from an Autism center. That experience makes me think it might not be their main area and would be a waste of time.

Every single one that specializes in AS is in a pediatric practice and will not see me, and on top of that they will not or can not refer me to anyone else. The most helpful one said to send a list and he might pick someone off the list if he were in a good mood.

I have a Psychiatrist and Psychologist and they are having a hard time coming up with a name. Any time I do get a name they are flakes, won't return calls, or just flat won't see adults. My Pdocs are great guys, but they have no experience with AS and can say the DSM or the articles I bring in sound like it might be possible, but they have never seen a duck, so their best guess is not the same as someone saying "oh, that is a duck for sure! there is no doubt! No way it could be a swan, I know ducks."

Anyone else frustrated by the attitude that this is a problem that only children have, anyone born before 1994, you are on your own.

Just venting, but at this point if there is an adult aspergers expert anywhere in the US I am about ready to buy a plane ticket and go to the best I can find no matter where they are, or if I have to pay cash, or whatever. If that doesn't work, europe is nice this time of year...

take care,

Jester

Yeah I'm shocked by the number of people here who are adults that think
there is any value in seeing a doctor for asperger. What treatment have you
seen listed any where on the net that make you think there is any value in
seeing a doctor for asperger? The doctors who help young kids know there is
very little they can offer that would help adults.

I'm in the UK, and I'm 32, but I'm totally furustrated that I'VE had to make the first move and do all the research to put forward the posibility that I am AS, when after being sent to 2 child psychologists as a kid, there HAS to be cluies in my notes.

Thankfully, I have a Doctor who took me seriously enough to get me a referral within a month of contacting him. I am now with 2 wonderful Learning disability psychiatrists, one of whom has unofficially told me she thinks I have AS. I will be seeing them again a week tomorrow, hpefully coming out with a diagnosis one way or another.

I know that there is no cure or treatment as such for adults, but sometimes the knowledge itself remioves a huge burden friom your shoulders (figuratively.)

Good luck!

JulieArticuno

And on the value of an dx of asperger from a doctor. There is not a diagnostic
test in use(well FDA approved or known to me)to test for asperger. A doctor is
going to use the same DSM stuff you can read online. They will make a subjective
judgement from that and what you tell them to dx you with asperger.
I'm guessing everyones main problem is social skills related .If you got asperger
or "insert anything here" syndrome, regardless how you got here if you got
major social skills problems as an adult chances are your going to have problems
over comming the problem and what few usefull ideas/treatment options
available for any social skill impairing condition will be the same.
If anybody has learned anything usefull from a doctor on asperger
(by getting treatment from that doctor). I've not seen their post.
We have alot of common issue and many people here have got cool ideas on
how to deal with problems. If your an adult your best option is to read and post
what you know. Thats another problem so many are asking for help for very
generalized problems that we have no cookie cutter solution for.

I have recently started seeing a psychologist who specializes in Asperger's, and I feel that he's a very big help to me. He's helping me with suggestions about how to deal with some of the sensory issues, for one. He can offer suggestions that have worked for other people that I may not have thought of.

For me (though this doesn't seem to necessarily apply to most others on this board), I try so hard to set up rules for myself and learn behaviors to appear more "normal" that I end up stressing myself out so much that I become suicidal. This has been going on since I was 11, and I'm 26 now. Unfortunately, since I was misdiagnosed in the past, I was always treated from a "mental illness" viewpoint. All that did was tell me that my problems WERE my AS-related behaviors, and that I had to learn to stop them or control them so that I could fit in, and then I would be fine. Unfortunately, trying to do those things simply results in more stress for me, which leads to more suicidal episodes.

I'm learning now that I can't change the way my brain works any more than I could grow another arm just by wishing really hard. And my behaviors are ways that I have invented to cope with things that stress or frighten me, and trying to get rid of them just prevents me from discharging my stress and leads to more stress.

I, too, had a hard time finding a doctor who could diagnose AS in adults. I first tried to get a referal from my general practitioner, but she didn't know anyone who was experienced.

I eventually located an email address for an AS support group that met in a nearby town and asked the organizer for a referal. The psychiatrist I found has worked with Aspie adults and children for 10 years and knew what I was talking aobut when I described why I thought I might have AS. I think I was lucky to find a doctor with experience. I'd hate to think what I could have been diagnosed with by somebody who didn't know AS.

It was expensive, the doctor didn't take my insurance so I had to pay for it out of my own pocket, and it was a bit of a drive to the office, but I think it was worth it. At least now I can say that I'm not crazy or delusional or neurotic or whatever. I really am an aspie.

Now I just have to figure out what to do with that knowledge.

I'd advise reading up on the disorder and writing out what symptoms you have that seem to apply. I found it very helpful to write out a life history, concentrating on my childhood, that I provided to the doctor to help her in her diagnosis.

I do wish that somebody would develop a test for adult aspies, I had a hard time answering some questions as I either didn't remember or I didn't know. How am I supposed to know if I had an odd gait when I was a child?

I do see that there is a point to questioning what good a formal diagnosis will do when there isn't any treatment or cure. However, I found it helpful in that now I don't have to question myself, I know I'm a normal aspie and I can now work on addressing my problems from that point of view, rather than wondering if I was an NT with mental problems. I also found it helpful that the doctor listened to me and validated my point of view. I could tell her things that I'd never tell anyone else for fear of sounding crazy, and she said, "oh yes, that's just how you Aspies think about things."

Well - it certainly helps to get accommodations at school... Some of us adults are students.

It's OK to buy a plane ticket and go because you think you need help. I can't find other ways to solve this problem.

What accommodations would you suggest? Most the problems I had at college
were social things with other students. Basically I was odd and it took time to
find people who could tolerate me.

Wow!

It's interesting that there are doctors around your area who specialize in AS, but they can't even see you.

I hope things work out for you!

I had to do practically the same things to find my doctor who specializes in AS. He doesn't take my insurance, and I have to drive 1 hour 15 minutes to see him. People keep questioning why I drive all that way for a psychologist, but he really "gets" it, unlike all the other doctors who just pin all the things that I do on OCD and tell me that medication will make it go away.

If you're in the US, get in touch with your local chapter of the Autism Society of America. Here's the page with the Missouri chapters:
http://209.200.89.252/search_site/chapt ... =&state=MO
They should be able to point you in the direction of a doctor that has dealt with adults.

I'm in the UK, and I'm trying to get a diagnosis. The psychologist I saw at my local hospital thought it was 'possible' that I had AS, but admitted that all she knew about it was what she'd read. She told me that there was nobody in the NHS service in the whole county (Lincolnshire) who was qualified to diagnose adult AS, and there weren't even many services for children. I ended up calling a national autism/AS helpline who gave me a contact name for a professor in Leicester who specializes in adult autism, so when I see my own doctor for an appointment this week, I'm hoping to try and get him to make a referral.

Well, I finally found a doctor that is really good.

I cant tell you how many doctors that were Autism specialists I called that only saw juveniles, it got to be that I knew what to say so that I didn't have to listen to them tell me they only saw kids.

None of them would give me a referral. One would, but said I had to send a list of doctors for him to pick from. I said why, and they said because we want you to be able to use your insurance. When I said I was so frustrated I was willing to pay cash, she changed her tune and started saying that the doctor just preferred not to give referrals without being given names to pick from, and I could send a letter without names, but she was 99% sure he would not respond or likely even read it. What a lovely chap.

It seems to me that the Neurology/Psychology community would bend over backwards to repair THEIR MISTAKES in misdiagnosing AS individuals for DECADES after other countries were clued in to this disorder. A lot of my childhood adolescence, college and young adulthood was a pure hell that could have largely been avoided had I known what AS was & that I had it.

I saw a Neurologist last thursday and he said I very very obvioulsy had AS. He also, as I was tellng my history of mental health issues etc. identified a bunch of AS traits & telltales I had that I didn't even know about. For example, he said that Wellbutrin and Adderall helped me because they raise the brain level of certain neurotransmitters that those with aspergers have a lack of epinephrine, so these two drugs both raise this and improve my function.

The Neurologist suggested I start counseling with someone that specializes in helping autistic and AS people learn how to navigate the NT world. That can be an extremely frustrating and painful experience.

Being at the extremely high end of high functioning really is more of a blessing than a curse in some ways. Since I seem like an eloquent and well spoken individual when I call someone's kid ugly by accident, they figure it must have been on purpose and a dig at them as opposed to if I were more obviously impaired they might shrug it off as an accident.

So, I have a formal Dx and am scheduled to get a cat scan to check out my frontal lobes, and see how many cylinders they are firing on.

The benefit to me as an adult knowing I have this for sure is that I have a formal DX so if it becomes an issue at work, I can tell people I have it, not that I think I do, or maybe I do or etc. Also, my family knowing for sure will be a good thing, as they too will take it seriously and perhaps learn about it more than they would have otherwise. My neurologist says there are medications that help a lot, he specifically mentioned Levaquin as one. Apparently if my scan turns up funny he may suggest I take this. I would think a good neurologist & Psychiatrist woudl be essential for anyone with AS that has had mental health issues. The other big benefit is I can finally explain my childhood and know it is not that I am defective, but that I am different that caused me so much pain.

So, I will finally get to move my check box from self dx to formally dx.

take care,

Jester

Last edited by jester69 on 25 Sep 2006, 11:10 am, edited 1 time in total.

Am I wrong when I say that there is one thing to do when you have AS and that that is to take Ritalin, Concerta or Adderall against the problem of focusing on things other than our special interests?

Well, my new neurologist mentioned that Levaquin had some benefits, can't remember what they are. In any event that is one other possible thing to do...

Thats why a good Dr. can be so helpful, they know what is going on in my brain more than I ever could without all those years of school & training behind me.

take care,

Jester

When I was a kid the search for an AS doctor-specialist-dude-thingy was relatively easy. I was born in 1990, so jester's theory of 'before 1994 and you're screwed' is disproved. In this case at least. Maybe you should come down here for a bit and try to find someone!