Trying to be diagnosed as an adult

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Hi folks

I've been looking into Asperger Syndrome for nearly a year now, and I still havn't managed to hunt down a diagnosis!

Part of this is due to my own stuff - I am unwilling to go to a private head shrinker, as I don't wholly trust private practioners to not just be lining their pockets. (Charging £150 for an hours work? Please!) I wonder if some private psychiatrists / psychologists don't just go along with a client's self diagnosis because they're being paid for it.

However, a big chunk of this is to do with the apalling lack of services for neuro diverse adults. (Well, the lack of services for anyone with mental health condidions or hidden disabilities, really.)

I have been to my GP a number of times. When I eventually got them to agree to refer me to a psychologist it was August 2005. I have just phoned my GP practice to find out if this psychologist is going to see me or not, and it turns out they have left the practice!

I am going there tomorrow morning to try and get another referral to a different psychologist.

As I turn into a gibbering mess when asked to explain what I want I have written out a mind-map type thing, with the aspects of AS, CAPD (which I also believe I have), and anxiety / depression (which I'm diagnosed with but don't have huge problems with anymore) on that I experience.

I was wondering if anyone here would take a look at this mind map for me, and tell me if they think it might be useful in my getting a diagnosis.

Thankyou.

The mindmap is here : http://pics.livejournal.com/queerpuppyboy/pic/00006ek4 Apologies for the tiny writing.

I'm curious as to why you want to be diagnosed? Especially as an adult I don't know if that makes sense unless you need to have special accommodations made?

Personally I would rather not be diagnosed because it could effect my job, custody of my kid, or any number of things and I can't see a benefit to being diagnosed.

I think it's more important just to treat any problem symptoms. Anxiety, depression, OCD, self-harm, etc. You don't need an autism diagnoses to get that treatment. Although I guess it might help in how they treat you. In my case I'm just going to have testing done for specific things like neurotransmitter levels, gluten/casen sensitivity and things like that. Then I'll chose treatment based on that.

I had to write it all down for my dr. he reffered me to a shrink (I go in two days for the first visit). I NEED to know for sure. I am 98% sure on my own, and my family Dr agrees with me, but he cant be sure. I want to seek therepy, personally, that might help me deal with social situations better as I am a social accident waiting to happen.....

Well, I have no concern about being discriminated against in the workplace because
a) I'm unemployed
b) if I were employed it would be illegal to discriminate against someone with AS, as under the DDA http://www.dwp.gov.uk/asd/asd5/summ2003-2004/202summ.pdf it is illegal to discriminate against anyone with a disability, health condition, and so on.

Over the last year I've gone from thinking it might be helpful to have a diagnosis but not being bothered about it, to feeling it is actually quite important to be officially diagnosed.

I don't like going to the Job Centre and saying
"I really want a job, but I need to work somewhere quiet, I don't do well with lots of social interaction, I need clear step-by-step instruction but I'm not stupid, and I like putting things in order. I can only work part time too, as I need lots of time alone",
being asked
"why do you need that? Are you just being picky?"
and having to reply
"I think I have Asperger Syndrome and Auditory Processing Disorder, but I don't have an official diagnosis of either."

Unfortunately, the Job Centre, and the Social Security system in general, requires concrete diagnosis, not self diagnosis for them to provide services.

I'm sick of feeling like a hypochondriac - like I'm making it up, because I'm not content with just being depressed and anxious. I have been happier over the last 6 months than I've been for a long time, but all of my social problems are still there - just as they've been there since I was a small child!

I find describing what I mean really difficult, so bear with me!

It's as though all the various things I experience are little pieces of a jigsaw, but lots of jigsaws all jumbled up, with some pieces missing. Rather than try and deal with individual symptoms, I'd like to sort the puzzle into piles - which pieces are AS, which are APD, which are anxiety, which are nothing etc. Then I can start to make sense of it all, and I can't do that alone, I need the help of someone that knows about AS to work out with pieces make the AS picture. To access a person that knows about AS I need a diagnosis.

Does any of that make sense?

Robin

Two things: I am also looking for a diagnosis and having a hard time muddling through the stupid system. My psychiatrist is reluctant to make the diagnosis because he doesn't have experience with it. Great, what am I paying him for again?

Anyway, I am going to go out on a political limb here and say that I think we should all get diagnosed so that we can get more support services. There, I said it. (cringe - waits to be kicked off the board)

Get an appointment via the NHS,the waiting times can be ridiculous depending on area,and the NHS is screwed up,but there won't be any extra money risked from going private.

And a diagnosis is good for many reasons:-helping parents/family to understand,a closure for ownself-realising there was a name to the behavior+difficulties,support workers and DLA if needed[although it's a fight trying to get social workers to understand that just because someone has a good vocabulary it doesn't mean they can't have difficulties that require support].
Excluding the DDA, if a company didn't want to take someone on for disclosing their ASD,who would want to work for them when they treat their employees with such prejudice anyway?

For job related stuff,Prospects[run by the NAS] is a employment service for people with Autism [whatever ASD label the person has been given] which might be worth checking out as they do have a place in London,it's like the job centre,only for people with ASD.

I've got appointment with my GP for tomorrow. This is my second visit. The first Doctor took one look at me and said he didn't think I had AS and didn't refer me to anybody else.

I guess I want a diagnosis cos I'm trying to find out who I am and were I fit in. I'm 39 and feel like I've been drifting though time with no control over anything. I was lucky enough to get married and have kids. Now I'm single again. Most of the time I hate the real world and wish I could live in some kind of fairytail make-believe land.

I had a psychiatrist actually laugh when I told him I thought I had AS. Needless to say I never went back to him. I've been spending part of the morning trying to find a professional qualified to give me a diagnosis. I live in a place where health care is substandard. So I wait.

But I agree with all the rest of you about the various needs for a diagnosis. To not have to wonder, to be able to say definitively, I'm weird because I am not neurotypical would be liberating. Plus, like I said, the more of us diagnosed the more funds can be appropriated to research, more support, etc.

And I'd like to think that any potential employer would have to make accomodations for us, so we don't have to suffer so much in the workplace anymore.

Bland-After looking at your map I'd say you have some serious problems! The question is how you're dealing with it? Are you able to sort through this and function well or do you need coaching? Many of your behaviors look like ADHD and AS. Double-whammy!! My husband is ADHD and he drives me nuts!! So do my kids that have it! I have no problem with my AS son, however, and relate to him very well. I understand him and he's easier on my nerves! I have to remind myself why my ADHD husband and kids act the way they do, and figure out what they really meant and deduce that they didn't get part of what I said because what they said was really irrelevant and didn't make sense!! ! AAAHHHH!! Communicating is hard enough without all of this insanity!! ! Seriously, I think it is difficult to get a diagnosis as an adult because you usually have learned to cope so well that no one can see what is really going on. I was shocked at myself when I took the self-test on the Self-Diagnosis thread. I did not know that I was so inhuman because I don't act like it. I have learned to act as I should. The professionals that deal with my AS son say I couldn't possibly have AS but they have no clue what goes on in my head. I wonder, though, if you are really depressed? Not doubting you, just asking you to re-examine what depression looks like for you. I always score high on the depression scale when I've been to a counselor or psychologist. I believe this is because I answer the questions honestly, not according to how I would actually behave in a given situation, but how I feel about it (in other words, my first instinct). For instance, "If you were given the choice of going to a party with friends or staying home which would you choose?" or "Would you prefer to watch a movie alone or with a friend?" I always answer stay home, alone and this is not because I'm depressed but because it is my preference. Too much stimulation makes me anxious and stressed. I need peace!! Also, I seem to have a limited range of interests and this also makes me score low. I'm kind of extreme, too. If I can't jump out of a plane, then I'd rather just sit home and read. I would encourage you to get a diagnosis just for peace of mind but do expect to pay alot for it. We took our son to a psychologist at age 4,6, and 11. We spent around 2,000 dollars but I think it was worth it and our reason was for him to be able to obtain special services or $$$ or living arrangements in case we die and he needs them as an adult (which I don't think he will, but we're just not sure). And I think that the older a person gets, the harder it is to tell!

i'm 36 and i went ahead and got an official diagnosis. part of it was because of ssi. i'm already getting that due to ptsd, panic disorder, depression, but i think i do have to go up for reviews every now and then, and so i wanted to have an official diagnosis for that reason.

i also wanted it so that i could say with confidence that i have asperger's when people try to put unrealistic NT expectations on me. it's like i can say "screw you" with confidence.

plus i think i just wanted to know for sure myself. getting the official diagnosis was a relief for me because i finally had a word as to why i am the way i am other than "freak." yeah, i know i don't need an official diagnosis for that, but it just seemed like for me without that official diagnosis, i always wavered in my thoughts about myself. it has actually boosted my self-confidence.

it was also difficult for the specialist to say for sure that i had asperger's because i had so much trauma in my life and that could mimic asperger's. but i'm grateful i did get the diagnosis.

i wish you the best of luck.
april

Uh. Trying to figure this out in my head. I got a dx a few weeks ago for AS,ADD, etc (unfortunately there is 'etc')

Personally I'm glad. I know it's just a label but it's helped me feel like it's not my fault... my life that its. It's a mess... but I'm not complaining here. Not feeling bad about it right now .

The support, yes. I hate public support and I'm dragging my feet b/c of it (not good either) but I really should be applying for it. I started the paperwork anyway. Well what made me respond was my own dx experience.

Earlier in the year I ment to the County MHS. The stuck me with a therapist who did nothing and a psych who handed me new drugs on a daily basis, none of which I took. I'd tried a few other therapists before without much luck.

Then I got word of someone in town who did Personality Disorders- at the time I was leaning, myself, towards AvPD, BPD, as a self-diagnoses. I get in there and talk to her for the session. At the end she says "well, I can't tell you about the PD's, because you've got a world of other problems. To me it looks like ADHD passive, and there is a short list of other possibilities."

She didn't say the word 'Asperger's' until the second visit. Upon hearing about it I went on a reading spree. Bingo! We had found me. Eventually I ended up at a pyschiatrist for more formal work. She is not shy about the dx's... not that she's easy, just saw it right away.

I think the key for me was finding a good therapist first. A good therapist can recommend a good psychiatrist. Both of them now are on my side. It helps. Sometimes I feel like they are the only ones who DO understand. My friends don't know what to do with it. They know I'm a bum but think I'm 'not living up to my potential'. Guess what... I agree, thanks. I try to explain and they don't want to hear it... whatever off topic!

There can be good experiences out there. It took me a while to find it but it was there. Therapists are easier to try out than psychiatrists, anyway...

Getting diagnosed as an adult was one of the best things I've ever done. For me, it opened up a whole universe of self-knowlege and self-acceptance and I'm much better for it.

I didn't get any medication or social services. I haven't told many people about it. It isn't always a happy experience, but it was SO worth it.

Finally, finally the world and my position in it makes a little bit of sense. I'm really grateful for that.

It is unfortunate that some Aspies must wait until well into adulthood before getting diagnosed. Since I was 15 when I was diagnosed, I can only imagine what it would be like going even more years without knowing exactly what is unique about yourself.

I was recently diagnosed July 2004 with AS. I was 41 years old at the time of My diagnoses. It gave Me the understanding of who and what I am in the end.