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(9 Posts)
NothingElse Mon 26-Aug-19 22:11:10

Have been linked to many articles over the last few days all claiming autism is now overdiagnosed, the 'label is becoming meaningless' and the gap between autistic and neurotypical people is becoming too close to warrant the diagnosis - I'm assuming these are all stemming from the one Canadian study published last week?
I haven't read the study or many of the articles, I'm just getting the headlines popping up continually. Wondered what others thought? Both of the study's findings and of the media speculation..

toffee1000 Thu 29-Aug-19 00:46:40

I think the biggest problem is the fact that the DSM 5 doesn’t have the separate diagnoses of autism/Aspergers/PDD-NOS etc anymore and have lumped them all together under “autism spectrum disorder”. IMO that was a mistake - the spectrum is so huge, someone “high-functioning” like me cannot be compared to someone who is non-verbal, doubly incontinent, physically aggressive etc.
As for the gap between NT/ASD becoming too narrow... yet again another issue with the DSM-5. You cannot compare someone who is ‘high-functioning’ (I know some hate that phrase but I’m trying to illustrate a point!) to someone who cannot speak, cannot take care of themselves and will never ever live independently. I am able to “pass” as NT as I have had to mask/adapt to the NT world my entire life. With 24 years’ experience I’m pretty good at it by now.

NothingElse Thu 29-Aug-19 01:38:33

Interesting. I take your point although I'm on the opposite side of the fence I think.
Having had time to now read the study, the aspects being compared within the studies were: brain size, emotion regulation, theory of mind, planning and p3b amplitude (something to do with cognitive functioning google tells me).
Interestingly language and repetitive and restrictive behaviours were not compared in the study. Interestingly because are those not the very domains which are looked at in diagnosis?

I'm not convinced the study is particularly illuminating, perhaps more interesting is that it has been picked up by so many press outlets worldwide. Could it be an attempt to stem the flow of diagnostic referrals? There are plenty of studies published all the time about autism - what makes this one special?

In answer to why the criteria have become broader and therefore more are diagnosed, I believe this is a positive in terms of understanding of autism and its impact. Moving away from labels such as high and low functioning I think is also a positive consequence of this.
But equating more diagnoses of high functioning/AS profile people with the gap between autistics and neurotypicals becoming narrower is I in my opinion evidence of lack of understanding of what autism means to a person. Passing or camouflaging is not the same as being..

Thanks for your thoughts..

toffee1000 Thu 29-Aug-19 03:19:02

I haven’t actually read the study. But I agree with your last point... I might be good at masking but it’s not been particularly helpful to me, in that it’s not a true projection of who I am. Most of the people I’ve met likely assume I’m just very quiet and shy, and giving off “piss off and leave me alone” vibes. But that’s because I’m worried about what people will think of me. (Kind of silly really because the friends I’ve made have all been nice to/about me, and I’ve never really been bullied or anything but you can’t predict what new people will be like...)

attheendoftether Tue 15-Oct-19 14:27:28

No not at all!
I think we are only on the cusp of finding out about Autism, and I really don't think getting rid of the subtypes helped because I think Autism really does have sub types and this helps understand why it is so different for people.
For eg. My DS is anxious, all the time, he has massive separation anxiety, but he also doesn't link the body's nervous feeling to anxiety, he thinks there is something wrong with his body. But he has no learning disabilities, so he masks so well. His ASD is so obvious to me now, but it's taken 10 years of knowing him to get it.
He struggles with social communication ,in the way he will ignore someone,tell them to go away and not understand when they get upset with him. He honestly doesn't understand.
But if you met him, you wouldn't see all of the things I do. Even in assessment he scored borderline as he is good at saying what he thinks you want to hear.
The struggle for him though is very real.

attheendoftether Tue 15-Oct-19 14:29:05

Not meaning to contradict myself, he good at saying what he thinks you want to hear. But he slips up, and when he does it s so glaring obvious.Like with friends and ignoring them.

Grasspigeons Tue 15-Oct-19 14:50:30

I suppose this is something the medical profession needs to answer - do they feel they are diagnosing people that dont meet the diagnostic criteria or do they feel they have the wrong set of criteria. As an individual, ive not met someone who has a diagnosis that hasnt seemed to have autism, but i have met people who appear to have lots of autism like traits but dont have a diagnosis so my personal world says not enough diagnosis!
I actually think my son who is verbal and has a high iq has a lot more in common with some non verbal autistic people than he does with NT people. But he is at a special school part time as thats all he can manage. I am very grateful he can self care re toileting and feeding, but lets remember there are chikdren with learning difficulties or physical difficulties that dont have autism as well.

attheendoftether Tue 15-Oct-19 15:04:47

I think the way they diagnose Autism isn't accurate anyhow, so impossible to say it's over diagnosed, maybe its under diagnosed.[confu

TheLadyAnneNeville Sun 01-Mar-20 18:44:43

I’m great at camouflaging/masking/acting but under it all, I AM very different to most of the people I know. My diagnosis (as an adult) is Aspergers. My (unknown) condition caused difficulties in relationships and career choices, having children, socialising, or trying to. It wasn’t til I was diagnosed that it all made sense and I FINALLY gave myself a break. Instead of beating myself up for being deficient, odd, weird, struggling with stuff that came so naturally to seemingly everyone else.

Even though I’m married, have a child, had a good career, have a few friends and many acquaintances I AM autistic. I’m not obvious to those who don’t know me but I am. And always will be.

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