Aspies For Freedom

Full Version: A post about wrong diagnosis
You're currently viewing a stripped down version of our content. View the full version with proper formatting.
I totally understand how you feel. If you're child does not fit the DSM-IV criteria for asperger's then he probably doesnt have it, I never even heard of those weird tests they gave. Them same thing happened to me basically, I didnt even fit the DSM and still got labled. My suggestion is find a new doctor and get him re-evaluated.
Some parents, "professionals" and teachers do apparently worse when they are told and believe that a kid has AS, it's not an uncommon story. Help your kid to be who he wants to be regardless of diagnosis.

I have AS, and I have actually been lucky throughout my schoolyears. Someone else I know got her life quite messed up when the school was told she had AS, she had an aide who thought she only acted misbehaving on purpose and she has a bad experience with the governmental organisation that was supposed to help her. She has dropped out of school because she couldn't take it.

In my case, the very same organisation had arguing within who was supposed to do what, and nothing was done. I didn't have use of my aide but at least he accepted me for who I am.

Quote:
For some reason, here why I reside the tendency is to place grown ups with AS in a protected environment, and only accept sheltered employment etc. It can be a very crippling diagnosis to have, especially if you do not qualify for it. That being said, should he actually qualify (which still remains to be seen) then it won't alter much for me (I hope). He will still be my beautiful lovely boy.


Thomas' dad.
My feeling is that you should just let it go - don't worry too much about it - go with the flow.  If this diagnosis isn't right - the education system/school will soon work it out. He's only in kindergarten. If I were you I would make my feelings known regarding a possible diagnosis  - if the psychologist says aspergers - then (to my mind) if the diagnosis is wrong - the diagnosis will  just be words on paper. The school will soon work out what your son's individual needs are - and if Thomas doesn't need any extra help - all well and good - if he does need extra help - then the diagnosis my be helpful.
I don't see how you can loose.
And like you say - he will always be you beautiful lovely boy!!
If there are other problems between you and your wife - you need to sort them out. I know I tended to be an overprotective mother - but my son was bullied - he needed protecting.
My husband could never see the issues - my son didn't get his diagnosis when he really needed it - at school.
Feel free to argue any point - I haven't put too much thought into this post - these are just ideas that come to my mind.

Oops - I spelt lose wrong.

You son has a nice name - my son's name is Thomas.

How can Thomas lose? How do you see that he will lose? Specifically - I mean. Sorry - I feel I may be missing something.
People don't need to make their diagnoses known do they? - people have a right to privacy.
I can't stand on one leg with my eyes closed - can anybody??
I would have thought a medical diagnosis was a private thing - there should be no need to disclose. Maybe I am being naive.
Also - I imagine if the diagnosis is wrong - there should always be an opportunity for reassessment.
Worst case scenario - protected sheltering maybe beneficial for some people if needed. I doubt many people who post in this forum live in  a protected environment. My son has a mentor - paid of by the government - the diagnosis means he can get this help - it's a good thing.
Oh - maybe you just need some time to grieve and learn - I know when my son was diagnosed I felt sad - but at the same time I was pleased he had the diagnosis - had it not being given I would have felt distraught. Mixed/ confused emotions are okay.
Do you know much about aspergers?
Children change and grow and develop at different rates - if he has aspergers at sixteen - my feeling is that is will be very apparent.
I don't really know your situation - maybe I am well off the mark - sorry if this is so. I don't want to undermine your feelings.
sorry Thomas' dad - your last post confuses me.
oh - I meant two posts back - that post confuses me.
Hi, Thomas's dad. Welcome to the forum.

As I've been reading this thread I keep hitting the same question, does his son have AS? Which is largely hard for me to know, you describe so little about him, just your wife. It leads me to think two very different things:

1. Your son may very well have AS, but you are in denial and therefore aren't learning anything about it and are instead insisting that nothing is "wrong" with your child.

In that case, there isn't anything really "wrong". A spectrum is a spectrum... it definitely doesn't mean that he's going to be unemployed and in group homes for the rest of his life. There are several people on this forum that can handle the real world well and have made adjustments to better suit themselves in society. I am married, have two children... I'm somewhat normal. Smile If this is the case, I think you owe it to your son to find out more about AS. The DSM-IV sounds very cold and clinical... read some of what others have written here for a "real world" version... maybe that will make it more real.

From the few things you've said though, he very really could have AS. It would make sense to me that if a child with AS grew up in the same place, had a few friends that went with him to his kindergarten he would be somewhat unbothered... but pick that kid up and put him into a new kindergarten, new house, new scenarios... When I moved when I was 8 I had a terrible time. I had had problems before, but they were dismissable... "So what if she likes to read through encyclopedias, its so cute!"... but taking two years to properly adjust to a new place is a little different. Maybe all those changes are bringing out his autistic nature... not just his way of dealing with his mom.

The other thing I'm thinking is this:

2. Perhaps he did get a wrong diagnosis. Kids go through bad spots all the time where they have negative responses to stress. Pehaps they just need to retest.

If that's true than I still think he's okay for right now. From what I understand of aides they don't do the work for the kid, but rather point the kid in the right direction. They should be helping clarify the steps you should be going through to get to the end result... I don't think that's very bad for anyone to learn,
AS or not.

The thing with your wife is just as much a problem. If it is as you say, then you have real problems. If you're the only person paddling a boat in the right direction... that's bad. But I don't know what else you could possibly do if family counseling doesn't work. Maybe you could take a week off from work and tell your wife that you'd like to try things your way and see if they help. It could be that you really don't have an accurate grasp on what she's really dealing with... or it could be that she's really not in reality.

If it really is her... I don't know what to tell you. I hate to say that divorce is the only option, but if she's messing with your son... Though you couldn't refute a genuine diagnosis in divorce court and would only make yourself look dumb. You could always get him re-diagnosed covertly... can't see that being good for your marriage, but if it comes down to it, you would need something to refute the claim in court.

Good Luck, either way. I'm sorry if what I say is offensive, its a hard situation regardless of what is really going on...
DSM-IV is the Diagnostical and Statistical Manual of mental disorders; the 4th edition (1994). It's issued by the American Psychiatric Association. The current issue is the first that include Aspergers Syndrome. It's 5th edition is scheduled to be issued in 2011.

& welcome to the forums. I'm from Sweden.

victim of psychiatrists. Wrote:
Thomas dad, i really REALLY know what you are going thru. I was (wrongly) diagnosed with aspergers at age 10. I remember i felt really humiliated, because my mom would call me "special" even though I knew I wasn't. I was and am, just shy, occasionaly obsessive (who isnt?), phobic but thats about it. I was taken to dozens of psychiatrists, psychologists, therapists etc. all by my mom and had know idea what the hell was going on. One of them 'suggested' i have "AS". So I was forced to take some silly test at some county school disabilities testing center. I went to so many psychs and therapists that it's really vague, but I do remember doing coordination tests. By the way i have perfect balance.. I didn't learn to ride a bike until 10. Big deal.. And she took me to get an EEG for epilepsy. No epilepsy! She said my brain was "normal" recently when I asked about it. Hmmm. I admit I am sensitive to many things and phobic as well, but it's to normal things, like roaches and certain food textures that remind me of unpleasant bodily fluids. And I'm 100% introverted. But that's obviously a personality trait that's accumulated more and more over time.

My mom really takes this crap to heart. She bought TONS of books on it. As if she was completely obsessed with dealing with my "disorder" and preparing for everything she thinks I'll have a problem with (like finding my classes. for a mom who expects her kids to be successful in life she has low expectation for the simplest things). My dad doesnt say anything about this. I say I'm autistic to him he says Im not. I say Im autistic to my mom she says I have assburgers. Also I was forced to take 40mg prozac. I didnt have *nearly* enuf anxiety at the time to even have a reason for taking it.

Sorry for talking about myself so much. But theres a lot I have to sort out. I complain about this a lot to my mom because I am paranoid that she believes I am truly autistic, as well as being paranoid about others thinking I might be because of my shyness. My mom thinks me "obsessing" about it is because of autism too. I began getting really bad anxiety and starting to go very slowly into depression at around 8-9th grade. In 11th it got really bad so I completely shut my self out from everyone and everything around me. My mom thinks autism made me anxious and depressed.

I *really* feel like I am a victim here. I am very very angry at and psychiatry right now. Moms as well. There are obviously a LOT of criticisms of diagnostic tools like the DSM but psychiatrists and psychologists ive been to seem to ignore the generalizing, labelling and inclusion of nonsense disorders like AD/HD. Also no offense to people on this sight but I have a problem with people proudly identifying themselves as aspergers/autistic, or 'aspies', and calling everyone else 'NT'. It adds to the stigma and isolation in my opinion. and they dont seem to understand that.

OK so ive tried ignoring it for 7 years, since the dx. Now that Im getting less depressed and trying to get a little self-confidence, I'm denying it. My mom thinks I'm truly mentally disabled, and in denial about my disability. I feel like I'm trapped in one of those stereotypic mental health institutions where they hold you down and inject you as youre screaming "IM NOT INSANE IM NOT INSANE!". I tell my mom that I feel that this diagnosis on my records is holding me back, humiliating me, taking my self esteem. She says it's just a crutch.

Oh well I'm turning 18 in about a week and a half so I will *finally* be able to have some control over this. Also I'm going to my psych for a follow up for the antidepressants (also the same doc who dx'ed me with AS) so hopefully I will gather the courage to ask him to revoke the diagnosis. I will never settle for less on this issue. Especially when I know in my heart that I am not the lesser person I am accused of being. You can say you're proud of being an aspie, but I'm humiliated. I guess I take people's ignorant opinions too seriously ( i have told people on the internet about this disorder and they call me *** because of it). The ignorance isn't going to go away any time soon. Or ever for the matter, so why should I have so much anguish over this label, this feeling of persecution, when I don't even have it?

Sorry for the long rant. I'm very upset as you can see. I really have to get this out there because most people dont think twice about how theyre diagnosed or labeled like the original poster did. Good luck Thomas' dad. Thomas should have the right to be an individual, not placed in a group that he doesnt even belong in. Noone should have to suffer this way. Even if it's a 'medical' diagnosis it doesnt make it true or right, and just because  theyre professionals doesnt make their opinion right. Even if youre a loner, completely shy, a little too interested in comic books or what ever, that doesnt mean they should label your ((normal)) behavior and make it a disorder or disease. Also in my opinion, because of the forest fire of diagnoses (especially self diagnosis) of aspergers, it makes it that much less credible as a supposed disorder. At least when it comes to the very mild 'aspies'. If you look at it closely and really think about it, disorders like AD/HD and aspergers are so generalized, and the symptom requirements are so broad and unspecific, they really shouldnt be listed as disorders at all.

Sorry if im offending anyone. but i encourage you to think about your 'aspie' label and wonder, if it is really true to yourself, especially if you are a self-diagnoser. Why not label yourself as an individual?


OMFG! this is the story of my life! well with a few exceptions, because i am in fact an epileptic. Our moms must share brains or something. I KNOW what YOU are really going through.

Everything that you said is right, victim of psychiatrists. I totally understand where you are coming from. It's really too bad that people like us don't seem to have too much of a voice on the internet, even though there are probably many.
Pages: 1 2 3 4
Reference URL's