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.

Pretty sure I am autistic and it's become more apparent as the years have gone on. No kids, not married or had a relationship, struggled when I left the routine of school to go to college, look incredibly young for my age, speak with an odd accent, very shy, very anxious, don't feel I fit in with my peers at all. People say I act a lot younger than I am also.
Other things don't really add up but based on the above, I think I fit the criteria.

@Sirzy I was quoting the academically able part from another post. I'm sure you know what I meant but maybe I should have said "able to live an independent life without 24/7 care and support from others".

If I say to someone that my DS has autism, they will more often than not ask me what his gift is, or what school he goes to. They don't realise how hellish life is for those caring for people at the other end of the spectrum. They would never imagine us with a destroyed house, no school place for years, no quality family life, being on high alert 24/7/365, both of us black and blue and in the past with a broken arm and nose. No freedom, no sleep. Barely any quality of life at all. I can't even understand how he can possibly have the same condition as some of the articulate and intelligent people on this thread.

Once again, being articulate can give you no indication whatsoever of how disabled people are. Many articulate autistic people have no "gifts", end up with no school place or unable to cope with school, are on high alert 24/7/365, have extreme meltdowns, terrible sleep and no quality of life and many other difficulties too.

Basically you are saying that because some people can talk and mask and you don't see their difficulties that their difficulties don't exist. Masking also takes a huge mental toll and leads to mental health problems, so is not exactly a blessing.

What needs to happen is for society to become more accepting of difference rather than expecting disabled people to try to fit in with everyone else. And by minimising other people's disability because it doesn't appear to you to be bad because they are able to hide it from you, undermines that effort and the effort to get more support for everyone.

I wish I knew.

One woman (whose autistic nephew works for a cleaning company)informed me that my father couldn't be on the spectrum because he had a job.

Yes. There are NO schools that meet the needs of those who are autistic but academic. It's a disgrace.

One woman (whose autistic nephew works for a cleaning company)informed me that my father couldn't be on the spectrum because he had a job.

I had a social worker tell me my children aren't autistic because they can make eye contact! The ignorance is astounding.

For the umpteenth time I am saying that all disabilities are valid but personally would prefer if they had different labels.

My autistic ds is academically able, articulate, sociable, and at a mainstream secondary school.

I'd be quite happy for him to have some kind of sub-diagnosis/label to differentiate from, say, our friend's autistic child who can't be left unsupervised, is non-verbal and can be violent. I don't know what or how it would work though.

I attend groups for parents of autistic kids and every week the topic is totally relevant to us, and the advice is actually helpful and realistic, and every week all the other parents are facing much bigger issues in those areas. But the issues are the same.

He functions well but as others have said it's with a lot of scaffolding - if you bunged him in a 'normal' family he would stop functioning pretty quickly. Nobody sees what it's like behind the scenes.

Given that everyone has different symptoms / difficulties how would that work?

@SouthCountryGirl

I keep hearing this. But no one has explained why if everyone supposedly has it, why is it a diagnosis?

Everyone doesn't supposedly have it, that's the attitude and misconception we are trying to get away from.

For the umpteenth time it has been explained very clearly on this thread why any system attempting to do so would be meaningless.

Even though it's the same underlying condition?

That's like saying if some boys don't behave like other boys then they shouldn't be called "boys". They need a different label.

I mentioned in another post (it's a long thread, don't blame you for missing it) that my diagnosis was from the NHS.

It was from a regional adult ASD assessment service in England. They gave me a DSM V 299.0 Autism Spectrum Disorder diagnosis code with a specified support level, an ICD-10 f84.0 Childhood Autism diagnosis code with no specifiers, and also said that resources for Asperger's syndrome could be relevant for me. And a Read code for my GP to put on their system

So the levels have sometimes been given here in the UK, at least for adults, just apparently not consistently. At least with adults it's more likely that the level is likely to remain similar for the foreseeable future, whereas a three or four year old may have a dramatically different profile in five or ten years' time. If the support levels were to be used for children, I'd want them to be subject to reassessment because things can change so much — I have a very young relative currently undergoing assessment, and wouldn't want any report written now to be the major piece of information used in evaluating her needs when she's 18.

I think perhaps the adult diagnostic services are quite diverse in the way they do things (or were when I was diagnosed) because each area set up provision for adult diagnosis independently and quite hastily in the wake of the Autism Act 2009.

@Unicorn2022 didn't you think that Chris Packham's documentary was the first attempt I've seen to understand people with higher care needs? I hope to see more of that. I agree that the series looks like it is putting a positive and hopeful gloss on things.

I have had so many minimising comments over the years - I do love it when people tell me how 'functioning' my kids are and whether or not they think they're autistic - I don't think you can combat all the ignorance out there, just look at the opinions around Covid masks or vaccines.

Can you explain how said labels would be applied?

The problem here is OP has a child with very high support/care needs. OP doesn't like people with less needs sharing a word with her child. Her child is absolutely unaffected by my diagnosis, or anyone else with an autism diagnosis. OP had no reason to not want other people to share the diagnosis. It makes no difference to her or her child that I am also autistic.

People wanting to gatekeeper a word that applies to other people are doing it for no logical reason.

I think the diagnosis could be more nuanced. I don't think op is wrong for questioning such disparity in how autism presents and if she wants a discussion that's fine. It's not going to happen, why not chat about it?

People are stereotyping autism and rejecting anyone who doesn't fit the stereotype that they created. It's disgraceful, discriminatory and unbelievably ignorant.

Op is unhappy with people being diagnosed left right and centre. I think of you want to bring a reasonable discussion there is a proper way to do it and I seriously doubt OP posted this thread to have a good discussion.

Diagnosis is nuanced. My daughter’s has her strengths and weaknesses individual to her spelt out. Her diagnosis is very different to mine.

Well if I've missed ill intent or trolling that's a shame as I can see from responses it's a topic where people do feel similar about nuance being important. As opposed to a straight forward really bad to not that bad type understanding.

I'm not making accusations, just to be clear, but if OP posted for discussion, where are they?

I've never seen the parent of someone diagnosed with cerebral palsy who can't coordinate movement at all, can't speak, has learning disability, epilepsy and vision impairment, and needs round-the-clock care just to stay alive and safe, complaining about the fact that there are other people with a diagnosis of cerebral palsy who, to the outside world, just appear to be a little clumsy sometimes.

The problem here is OP has a child with very high support/care needs. OP doesn't like people with less needs sharing a word with her child. Her child is absolutely unaffected by my diagnosis, or anyone else with an autism diagnosis. OP had no reason to not want other people to share the diagnosis. It makes no difference to her or her child that I am also autistic.

I agree. Which betrays a lack of understanding of autism in general and indeed of how diagnoses work for a great number of other conditions as PP have pointed out. There will always be people with the same illnesses/ conditions affected to different extents and in different ways. It's a very bizarre argument to make.

It's also very short-sighted given that autistic people who are verbal are the biggest advocates for those who are not and fighting for increased support and protections for everyone. How do people think the Autism Act came about?

This is true bikini unless op has been put off by criticism? I haven't looked back for a while.

It's also very short-sighted given that autistic people who are verbal are the biggest advocates for those who are not and fighting for increased support and protections for everyone. How do people think the Autism Act came about?

I definitely do not see this amongst the hundreds of self appointed autism advocates/ ND experts etc on LinkedIn or other social media. It's all about workplace, gifts, not being disabled. I'd love to see some old fashioned inclusive activism but it's not coming up for me unless I follow charities and their posts.