Misdiagnosis

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Three times I have been misdiagnosed now and I'm getting a bit tired of professionals slamming all sorts of labels on me, while my children have been correctly diagnosed. They pay no attention to what I tell them and they have not spoken to my husband to find out what I am like. I have often found that people call me dumb. The thing I struggle most with is change. Anyone else have the same?

I have never been assessed. But, during my daughter's assessment, we were asked a load of questions, including those about social communication problems in members of the famiy. When I mentioned myself (I didn't go into detail as it was my daughter's assessment not mine) they kind of shrugged off what I said, kind of like 'everyone experiences that now and again' and laughed a bit about it. It was as if me possibly being on the spectrum wasn't all that important. Which is strange, because they were the ones asking about family members. Maybe they'd already decided that my daughter had Aspergers and didn't want to offend me, by suggesting it came from me. It might be different, if I went for an actual assessment.

With a world of information out there for every conceivable condition or ailment, then it’s easy enough to figure out for yourself what’s different or going on with yourself.

I grew up in the 60s and 70s. I would rock backwards and forward and bite my hands until they bled, I couldn’t look people in the eyes, I couldn’t talk until I was five years old, then I would babble.

The experts told my mother my behaviour was down to being deaf in my left ear, he will grow out of it they said and gave me some candy

If you can’t find the cause of a condition, and you have no cure, then what is an expert I always say?

Autism is measured by spectrums for a reason, like fine tuning a radio, sometime’s there are no signs at all, other times you find what you are looking for, it depends on who’s listening.

Unless you want a diagnosis for peace of mind, try not to worry yourself about it.

Yes, I was also missdiagnosed thee times, but just once it really happened that the shrink had no interest in other informations about me, because she has allready made up her mind.
I can't understand this ignorant behaviour at all!

Last edited by Raziel on 03 Oct 2012, 11:03 am, edited 1 time in total.

They tend to do that the experts, make up their mind about you based on a handful of questions.

But this can go totally wrong and every good expert I ever meet also informened themselfs about me, sometimes even talked to my mother, read all important papers about me I brought and so on.
And those were sometimes even leadin experts in my country.

So I can't understand at all, why some shrinks think they can give a valid diagnosis because of some little information who is total crap in the end?

I think most of the people on this forum know more about autism than any supposed "expert" in real life. It's really a shame in my opinion that people dismiss self-diagnosis, only accepting what comes from someone "qualified" to judge. We are more qualified to describe and label what goes on in our own minds and lives than any doctor, no matter how many years they spent studying the subject.

You also have to remember that most experts mostly diagnose children. They're used to the signs that children exhibit. Adults who are still undiagnosed have learned to live in the real world already, so of course we won't act the same way as autistic children (and even they all act differently). Most experts have very little experience diagnosing adults and don't really know what to look for or what questions to ask. My mother considers herself an "expert" because she's a special education teacher. She says I can't possibly be autistic because I don't act the same way as the autistic kids in her school do.

I think another common problem is that doctors of all sorts are frustrated that people are finding all their medical information on the internet. It used to be that you needed a medical degree to make a diagnosis, and now the information is free for all - but much of it is inaccurate, or oversimplified so hypochondriacs always think they have something because they exhibit certain symptoms. Also, a lot of people think they know better than their doctors do and don't accept a doctor's diagnosis if it doesn't match what they think they have. I think a lot of doctors overcompensate for this by completely ignoring anything a patient says about their condition, even when they should really listen. Sometimes the patient really does know more than the doctor.

Do you need an "official" diagnosis for anything, or are you just trying to figure out the source of your troubles? If you don't need it on paper, I'd recommend doing what I did: do your research, think carefully about yourself and your life, and if you have autism you will almost certainly figure it out.

Best of luck. I know the frustration of years of misdiagnoses and I hope you find your way out of it soon.

I don’t think enough passion or interest goes into most jobs our days, sometimes a job is a job just for the money. It’s no different being a Doctor or Specialist.

In England it's NEXT PLEASE, "Conveyer-Belt Docters". You have ten minutes then your time is up.

I've been dismissed by therapists and psychiatrists who say they've seen autistic people and I present nothing like that.

They didn't see me when I was little and was a toe-walking, spinning, water-phobic (it tickled massively), toothpaste-phobic (it burned my tongue like acid), rat-haired, match-eating, Narnia-obssessed, asocial mess who freaked out every time a plane flew over the house or a vacuum cleaner came on. All they see is a middle-aged, tired, clinically depressed, whiny underachiever with ADD and possibly PTSD.

I don't toe-walk, spin, or eat matches anymore. I'm clean and fairly stylishly dressed. My teeth are brushed. I can converse well enough to carry on a therapy session.

But none of my shoes are completely flat--even my flip-flops. The chairs in the doctor's office don't move like my office chair does. I eat a lot of salty foods. I became obssessed with style as a teenager. Toothpaste comes in different flavors now. And in the doctor's office, you're expected to talk about yourself. They ask questions and you answer them.

The best diagnosis for autism is with children, unfortunately for us older generation of aspies we were over looked. Who cares anyway unless you’re a smart savant

Nice to know that they realise we're not all the same.

I think the reason why I was diagnosed with PDD-NOS instead of HFA or Aspergers' Syndrome is because when my parents were wondering why I wasn't talking or socializing, they were more concerned that I had something degenerative, and autism wasn't as popular as a diagnosis (early 90's). I had other diagnosis', that "explained everything".

My mom was astonished when I was diagnosed with PDD-NOS. I wasn't surprised at all.

Thank you for your many replies. I have found that the specialists ask only certain questions and when you answer them in a certain way they think they've ticked all the boxes and they give you a diagnosis that has nothing to do with what is actually going on. I do know a lot about psychology as my mother studied it but I found I still had to research to find exactly where my symptoms lie. But to me it's so obvious that 2 out of my 3 children are under the ASD spectrum and my Dad was suspected to be under the ASD spectrum as well, but the doctors refuse to listen.

It's true what you've said that to them a job is just job and they'll do anything to keep it, but unfortunately the public are becoming a threat due to more information becoming available.