For those with undiagnosed Aspergers...

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It cost $1000 to get officially diagnosed? Hmm... Maybe my diagnosis was only "informal". Guess I need to research how to get official diagnoses. I've always just gone by what my doctors say.

for am informal diagnosis they will usually do an interview and maybe talk to family members.

formal diagnosis (in my case) has involved 6 hours of tests, a 2 hour interview, and 3 take-home questionnaires for me and my husband to fill out. i will get a written report once all the results are sorted (at the end of the day the psychologist said she is 95% certain based on the interview and glancing at the tests, but i haven't gotten the paper confirmation yet).

but some people don't have to pay for it, depending on what is covered by health care or insurance.

Did it only test for ASD or did it test for essentially everything out there?

ASD and common comorbids like ADD/ADHD, tourette's, some forms of learning disability i think

Ah. I'll look into these...glial cells some fine day. In any case, it seems to me that people who are ASD tend to have all sorts of other illnesses (bipolar, depression, etc.). Of course, while this is nothing but mere, unfounded, speculation, the thought of it irks me. Change (of any sort) is particularly scary to me.

Hey, if anyone would be kind enough to pay for it, I'd be glad to talk to someone who can dx adults.

I make too much on unemployment to qualify for medicaid yet not enough to pay for anything other than daily living. My county clinic treating my depression is under the impression that I can't possibly have AS because I'm 'not odd'. I'm not holding out much hope on their ability to dx an adult since no one there ever has before. Their only experience is with already dx'd individuals, usually those in group homes and on the LFA side of the spectrum.

There are some amazing clinical trials available in NYC but I'm just far enough away that the small fee they offer for signing up wouldn't be enough to cover my costs. But, they dx for free. Maybe that can help some other undiagnosed 'pretenders' out there. Lots of MRI work and one studying the effects of oxytocin... cool stuff.

GRASP Dx Resources

This is a pretty murky and nebulous topic in my eye. And Im still seeking more information on it...... Any would be appreciated, particularly anything along the lines of resources in the Seattle/Western Washington (State) area, particularly for low income or Free.....

How does one Diagnose any disorder? How does anyone KNOW? Most of the disorders listed in the DSM are entirely Diagnosed based on observation in clinical situations. IE, the effects of the disorder are so obviously unmistakable that the person being diagnosed can't function on their own..... So for everyone else that just has "mild" cases of things, or things that they can/have learned to live with, things get alot harder. Hence the focus on diagnosing children, because its easier to diagnose handflapping at age 8 before they learn to hide it as Anxiety related Fidgeting by age 18 (etc etc, for every symptom of someone's Mild Asperger's, there are ways of hiding it, its just a matter of experience and time. The more time one has to accrue experiences where they learn to hide things, the more difficult it is to diagnose things). Further, though adult Diagnosis is possible, in spite of the learned masking behaviors, it takes more time and a better rapport with any diagnosing medical proffessional for them to see things. This process can lead to all kinds of problems, including but not limited to Greater Cost, and misdiagnosis..... Not to mention the 40 something PERCENT of people that, having no Health Insurance in the US, aren't likely to even have any Primary Care provider, much less one they know well or trust well enough to talk about the kinds of symptoms that Asperger's produces......

I could also point out that from what Ive read, many adult asperger's Diagnosees seem to complain of misdiagnosis.... In the pill centered medical world the US has become, its far easier to diagnose ADHD for some of the more obvious symptoms, and perscribe Ritalin or something, then it is to dig deep enough to find Asperger's. And then you get things like Bi-Polar, that once you're labeled with, are hard to get out from under, no matter what else you're diagnosed with. On top of this, add Medical Staff that aren't always as thurough as they should be even when making simpler diagnosis then they should be, and something like Asperger's which also tends to be marked by something like a higher Intelligence (Or at least a great logic) Faculty, which means that that person is more likely to learn ways of coping when left long enough in the world, no matter how s/he feels about it.....

Anyway, getting back to the OP........

All I know, is it fits me. I can tell you the difference between a NKP Berkshire 2-8-4, and a K-4 Pennsy Pacific. I often have an impossible time hearing what someones saying to me when there's background noise. My wife and I constantly have misunderstandings, that when I go back and pick through, find to be really simple misunderstandings. I constantly get funny looks from people when I talk with them, particularly if its at length, to the point where Ive asked my wife if I really speak like a ret*d and nobodies just been nice enough to tell me. I just read a post about stimming, and ever since i was a kid Ive had issues with other people trying to get me to "Stop fidgeting"...... The list goes marching on and on...... Do I know that I am Asperger's? Not really. And Im considering seeking an "official" diagnosis, IF, and this is a big IF, I can find someone I can trust in a position to do so, thats willing to get to know me well enough to do it...... AND I have the money. For now, Im just going to keep learning. But I think the fact that alot of the Aspie Symptom related posts on this board keep feeling like they could be talking about me is a good indication that I might have FINALLY, found something that describes me well enough to adopt it as a label Im willing to call myself.

I can look back through my childhood and see why some things were the way they were. Why wasn't I diagnosed as a kid? Thats an interesting continuity of events I might share some day with someone besides my wife, but suffice it to say there are alot of things I resent about my childhood, and have often ended up feeling let down when I look at that part of my life......

Thank you for reading if you have.

Personally I've just felt that I had social anxiety when I first read about it a few years ago. The problem was that even though I tried being social and working I never 'got used to people'. Then recently when I was really upset I found some things that I wrote as a child that really upset and confused me. I went over to the SA forum that I frequent when I'm upset and saw a thread on Asperger's. I had never heard of it before. No one was trying to diagnose me with any problems as a child because I was a straight A student. Looking back on my life though almost all of this explains me and my behavior. I had tried seeing therapists in the past but they were really mean. Once I read about this I knew that I needed help. I was scared as s**t of spending the rest of my life fleeting from one crappy job to another only to not be able to hack it anymore. I had my first therapy session recently and when I brought this up she said 'we don't need to label you'. The only thing I could think was 'please label me, I've felt so different all of my life and I didn't know why until now'. Plus I felt that either I would need the label later to deal with bosses more easily or if I keep failing at that to possibly apply for SSI. The woman was very nice but I really don't see how she's going to help me. I hate talking about feelings, mine most of all. Prior to this though I knew that my SA bordered on agoraphobia and I kept hoping that I would just snap out of it. I didn't want to be diagnosed with something "crazy" because I figured there would then be a paper trail on me if I ever decided to do anything important. So I can understand why some people wouldn't want a true diagnosis but would still need to share with like minded people.

[quote=mori_pastel

And you have to think too what would be harder, to be told that the answers to all these questions, to why you don't fit in and why things are so hard, is that there is something fundamentally different about you that you cannot change because you are on the autistic spectrum, or that there is absolutely nothing wrong with you at all, that you are just an unlikable person who doesn't have difficulties but is just plain difficult. To be told that you are part of a community of brilliant, misunderstood people who make great contributions to society or that you are simply a one-of-a-kind freak who can't do things right because you're just not trying hard enough?

[/quote]

Wow, that really resonated with me. I was trying to explain some of the balance stuff regarding this with my mother and when I brought up all of the "easy" things that I could never master she said it again "you could have done that but you didn't try hard enough". She's been saying that to me for years about that/jobs/etc. It's so frustrating.

i personally am not diagnosed, but i believe that it is extremly probabale that this is the case for me. i've always been super shy, the 1st 4 years of my life i was always around the same people practically every single day & wouldn't comunicate with anyone else.... to this day i hate talking to people i don't know or don't talk to often, everyone thinks im really confeident, but really it's just an act & inside i'm freaking out, i can't even order my food in a resturant most of the time! i 1st heard about aspergers when i was about 11, looked it up, though oh that sounds like me!, never really gave it any thought after that, a while back i was watching a show called sherlock & my friend commeneted on how we act exaclty alike!, i have always loved sherlock holmes, but never really though of us acting alike... then i saw an article on how sherlock holmes could possible be an aspie & i thought lol, i have some aspie moments too.. ever since then i've been thinking if thats what could really be going on with me

in the 2nd grade, my teacher knew i was diffrent some how, she always made me goto the nuse's office & chat with her(so the nurse could maybe make a diagnosis) but when ever we had to do testing, i always had the highest grades, which surprised her because i hated doing the work(thought it was a waste of time, or was trying to fit in) or got bored of it & wouldn't finish. she gave me work the gifted kids did & i always did good on it(i also was forced to take the gifted test every year from 1st-8th grade) but on the gifted test, on parts i didn't like or thought took too long, i would just fill in random answers that were always wrong(surprise surprise!) & miss being gifted by a point or two

my pediatriction(idk how to spell:D) thought i was ADHD or ADD & tried to give me medicine.. but i threatened to bite him & attack him(i don't think this helped me any! haha) i hated that doctor he was old & mean! he , i don't think, was very knowelgeable about anything if it was sort of subtle(like aspergers) i think the only way he could reconise somthing was if it was in the extreme! my family was probably ok with this diagnosis because alot of kids have those problems, my dad is a doctor(my mom thinks she is! lol) & doesn't ever believe me when i tell him something is wrong with me(last year i went to school with a fever & had to take a bunch of test which i failed because i felt horrible ON my birthday! ) like he doesn't think im deaf in one ear because when ever i get tested, i cheat because i, myself, cannot stand the fact that i could possible be deaf even though i know i am & he thinks i tore my MCL or MLC(what ever it is!) but won't let me get an mri because he thinks im over reacting(personally, i think barley being able to walk some days is not an over reaction) & it will be a waste of his time... also i don't think that my family would be able to cope with me being like that(having aspergers) because there arn't really any where i live & it would be a shock to them, where i live the only thing worst than not fitting in, is not fitting in & have a diagnosis....... also my whole life, i've been trying to fit in & most people think im just quirky but 100% normal, they don't know about everything that's really going on because i don't talk about my feelings

hope i don't sound like too much of an idoit! haha

I was diagnosed with ADHD when I was in first grade. I spent 1st grade to 10th grade in special education where I was tormented everyday for being in "ret*d" classes. I always knew I was not learning disabled no matter how much I protested they kept me in those classes. I was not until 10th grade I said I was going to quit school so they retested me finding I was not learning disabled. I felt vindicated but only had two years of high school left and I really did not want to go to college I still had an attitude of I would not be able to do well because the only classes I had were special education and not general or college level classes that would have prepared me for college.

When I was laid off last year I watched a medical tv show that day they talked about the autism spectrum and how to detect it in children. When they talked about Aspergers everything they said about it sounded like they described me. Then they said a lot adults with Aspergers who were kids in the 70's and 80's were often misdiagnosed as having ADHD sinse they did not diagnose for Aspergers until the mid 90's. I knew I had it so I was happy that I finally knew why I felt anxiety around people and did not liked to be touched. I was content with knowing I had but it was not until I came to WP and had a**holes tell me I was not autistic because I lacked a piece of paper giving me an offical diagnosis. It was like being in school again I knew I was not learning disabled but I had a pack of jackasses telling me different. I still had medical insurance so the testing costed me $150.00 so I took the tests and the psychologist said he knew from the first interview that I was somewhere on the spectrum but I had a lot leanings towards Aspergers. I took the test and I was right I had Aspergers.

So I would like to take the time to say to people who doubt another person's autism because they lack a proper diagnosis is that you should be ashamed of yourself. If the person is not trying to run some type of financial medical scam then leave them alone not everyone has the rescources to get themselves tested. How do you know if someone has it or not when you have never met them? Even if you did meet them you are not a trained psychologist. Even a Aspie with a special intrest in psychology should refrane from making a diagnosis they are not a liscensed psychologist.

Last edited by Todesking on 18 Jun 2011, 1:05 pm, edited 1 time in total.

The visual interpretation of that is priceless...

I'm still wondering how that magical piece of paper changes things in the 'officially dx'd' persons mind... People without that magic piece of paper are just NT's looking for an excuse and then, magically, the piece of paper makes them officially autistic? Their struggles and challenges are irrelevent until they have that piece of paper to validate them? So it is okay to deride and harass someone who doesn't have that piece of paper but - as soon as they have it - they are now permitted into the 'officially dx'd' club and worthy of understanding and support?

Why this great fear of several generations worth of people - who were around before the dx existed - suddenly finding an answer and seeking out other people who think like them and share their difficulties? What are the undx'd taking away from the dx'd community exactly? What are the motivating factors to considering yourself autistic if you actually are not? Why the general concensus that people make this personal assessment lightly, without research and without a deep personal soul searching journey? As a general rule, the neurotypical do NOT want to be considered different. Why would an NT set themselves up to be singled out for a condition that is looked on with suspicion, fear and a total lack of understanding by society in general unless their personal experience is so troubling that they need an explanation as to why?

wonderful post.

Maybe in some cases it is very obvious without an official diagnosis. In other cases it is unclear. In my case all on-line tests say Yes, DSM/ICD criteria say No.


I do not get an actual diagnosis from my primary doctor for several reasons:
1. He is not a specialist,
2. I have already received several other labels making a doctor seem satisfied that enough has been done (by specialists),
3. Being almost 40, married and working makes me a very unlikely candidate for most doctors,
4. My medical record says I have trouble accepting the "diagnosis" that has already been done so far,
5. I don't believe a diagnosis will benefit me, since there are hardly any treatments for adults and I have no need for social security benefits (yet).

I come here (WP) to understand more about my experiences, and to understand more about the benefits/risks of an official diagnosis.


Understandable that people with an official diagnosis may be puzzled by others on this forum. I will not say I have it, actually I think I don't have it. I lean toward serious SPD (Sensory Processing Disorder) and OCD. My social issues and anxiety probably come from SPD. My depersonalization/derealization is probably caused by growing anxiety, OCD and fatigue, and my executive dysfunction from depersonalization/fatigue.


I have been on other forums, but nowhere did I find so many people with similar experiences. So even for someone who may not even be on the spectrum, this place can be of value.

The statement that follows is NOT said with any beligerance, attitude or prejudice - it's a simple statement that's meant to be taken absolutely literally - in that way I genuinely think you'll get the best answer that I can give (it pretty much covers all the same stuff just about everyone here has already said, but I'm trying to combine all that with a solid context).


What makes you think that your diagnosis was accurate and correct?... right there I think is the best possible answer to your own question.


Having said that, I have to admit myself that I will not deliberately call myself AS until and unless I get a diagnosis (tho it pains me to realise I've sailed a bit close to the line in some posts) - but I have no problem with others who do take that step - my problems with fully investing are internal - not related to outside issues.

Why haven't I sought assessment yet - I simply don't have faith in getting an accurate diagnosis. Give me an ironclad guarantee of accuracy either way and I'll be there tomorrow.

Last edited by Wooster on 20 Jun 2011, 4:25 pm, edited 1 time in total.

Wooster beat me to it... was going to say the same thing