Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

Op is unhappy with people being diagnosed left right and centre.

Except they're not. The assessments are gruelling and detailed and invasive and, for many, quite distressing. If people are not autistic then they will not get an autism diagnosis, clinicians are very careful. I have seen no outcry from people who believe they were diagnosed in error which inevitably would be the case if diagnoses were being "handed out left, right and centre" for any medical condition.

Yes, many adults are being diagnosed currently because the entire adult population grew up in times where autism was hugely underdiagnosed, so there is an enormous catch-up exercise underway. Particularly for women.

In the future - where one would hope that very few cases are missed in childhood, and also that childhood diagnosis is done far earlier so that there's less suffering beforehand - there should be very few people who need diagnosis as an adult, at all.

I'm not talking about social media. I have no interest in that and nobody with any sense pays attention to such nonsense.

I am talking about within autism charities and community groups who support autistic people and also lobby the Government for proper support and changes to legislation that can lead to real improvements to autistic people's lives.

There is sadly an issue with a minority of adults with autism thinking that because they are “actually autistic” they can speak for everyone with autism which is as wrong as people like the OP thinking other peoples diagnosis aren’t valid.

what people at all ends of the spectrum need to remember is that every person with autism is an individual and as much as you may be an expert on your own autism or that of your loved one it doesn’t mean your in a position to speak for others or to judge their needs.

Well there is an emotional reason for the thread - people may feel their caring struggles are implicitly minimised by ignorant comments from the population at large, perhaps misled or misinterpreting all the bob/Jane/Isaac/Charles were autistic stuff.

I wonder if a lot of the contentiousness with this debate isn't down to funding cuts for services, few school places, lack of support for carers and clumsy media stereotyping.

Down's syndrome and spinal muscular atrophy - two more diagnoses with huge range of care needs.

Exactly.

This depends on where you live/whether residential is suitable and the child/young person’s individual needs. There are a minority of specialist schools for academically able autistic pupils. Not enough, and they aren’t suitable for all academically able DC with ASD, even when they are they often take a fight to get.

I have seen no outcry from people who believe they were diagnosed in error which inevitably would be the case if diagnoses were being "handed out left, right and centre" for any medical condition.

Adults putting themselves forward for diagnosis because they believe they are autistic are unlikely to question a diagnosis they actively sought.

This is worth a read regardless of where you sit on the argument. It is estimated that in ten years time the difference between those with autism and those without will be negligible rendering thd diagnosis useless.

www.theguardian.com/commentisfree/2019/aug/26/autism-neurodiversity-severe

I personally see the diagnosis already as useless and describe my sons needs in other ways.

I also wonder about autism becoming an identity rather than a disability.

There is quite a big threshold to jump and forms to fill in to even get to diagnosis stage. Diagnosis and even trying to diagnosis are not just handed out left right and centre.

@Unicorn2022 but my DDs report did list her current strengths, her impairments and suggestions for help and support services that would help her specifically.

I think it would also be difficult categorising someone say age 5-8 because that doesn't tell you about the support they will need as a teenager or an adult.

Not true at all. There are many instances in medical history of people being misdiagnosed with things and it always becomes apparent and the unfortunate people subjected to those misdiagnoses complain, obviously.

I also wonder about autism becoming an identity rather than a disability.

How insulting to all of the autistic people struggling daily to live with their condition.

Again, you never see these kinds of comments about any other disability.

I think that is a really shit and one sided article that belittles the suffering many on the spectrum experience and an opinion not all working in the field agree with.

I'm not talking about social media. I have no interest in that and nobody with any sense pays attention to such nonsense.

Well that's me told. Although MN is SM and you are engaging. However despite us apparently having the same diagnosis we don't seem able to agree on anything.

I also wonder about autism becoming an identity rather than a disability.

This is definitely one way of thinking that I see a lot, with 'advocates' and 'speakers' making the case for it. It troubles me because I do use identity first language (im autistic rather than I have autism) but I also consider myself disabled due to my impairments (social model).

Okay. But MN is a discussion forum. I don't engage in FB, Instagram, Tiktok, LinkedIn or whatever. Surely it is obvious to most people that "information" found there on such topics is almost entirely designed to be self-serving and driven by either attention seeking or an attempt to make money.

That is not representative of the autistic community or those seeking to drive positive societal changes for autistic people through support groups, charities, advocacy services or political organisations trying to get positive changes to legislation and support and education that would benefit all autistic people.

I think that LDA (learning disability and autism) v A might be a start.

This is what low functioning autism and high functioning autism actually referred to - the presence or absence of learning disabilities. The ‘functioning’ not being your ability to hold down a job and enjoyed a large social network, but much more fundamentally able to understand and manipulate information at a basic level, including language. If you can mask you are not low functioning because of the sophistication required to do so. Nothing to do with the effort it requires or needing days of inaction to recover afterwards. However, I think the misunderstanding of this, and expectations as a result of being labelled ‘high functioning’, is a good reason to change terminology.

Yes but it is representative of part of the 'community' - those who see it as a positive different way of being rather than being disabled. There is so much dissent amongst 'the community' and I don't think all charities or organisations have the same mission either - look at Autism Speaks for controversy!
I'd love to catch up and be autistic as an equal alternative to being not autistic, but I'm not there yet.

Oh that is interesting, as to the history of it. I agree, I don't think 'functioning' works for people not in the healthcare world though - I know it gets used a lot by people who speak the language for other things (functional behaviours, functional reading age etc).

Said article is just a reader’s opinion and quite an insulting one. You’re apparently only “mildly”autistic or severe. 🤔

We’re seeing the opposite of his view- professionals seeing the importance of diagnosis and pushing for it in the battle with severe mental health struggles and keeping those with autism out of inpatient.

How often in those cases were the individuals, who were misdiagnosed, actively seeking a confirmation of a self-diagnosis?

Actually, I can think of another area where this is happening, an area that overlaps with autism - transgender. Though the outcome of that is much more tragic.

There is obviously scope for updated diagnosis as medical thinking changes - we've got several generations of autistic people who've received diagnoses over the years of OCD, bipolar, depression, bulimia nervosa, social anxiety, agoraphobia, dyspraxia...

I don't think that proves or disproves anything except that medicine is a constantly moving river.

All those diagnoses related to one aspect of what was troubling the person at the time to the best exercise at the professionals working with them at the time.

So can two people with EDS.

@user567543 can you expand? I was diagnosed with anorexia (and hospitalised), then OCD and finally autism - but I still have it had the others. I don't think for example that my anorexia was actually misdiagnosed and it was food sensory issues for example? Or do you mean co-morbidities which I definitely agree with.

I read the article. It felt like he was close but went to the house next door.

It's an interesting thread. Is autism more prevalent are people just pushing for more diagnosis?

My son is autistic - diagnosed very early, also has ADHD and SPD. Not just me who knew he was different, every single adult he came into contact with. He's exactly the same whether at school, at home or at his sports. It's crystal clear to everyone he's autistic and yes, he's weird ('m not offended by that and neither is he - he is weird, amazingly weird and he's just the best)

My daughter is 'normal' Or is she?! As she gets older, I start seeing anxiety issues/confidence/meltdowns etc etc. Now, I've had about 4 of my friends (also with autistic children) telling me she's also autistic and must be masking at school. They're literally pushing me to get her diagnosed and I quote, think of the DLA!

Honestly? I'm fairly confident I could get a diagnosis for her.

She's not autistic.