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.

Yes the individual, the level of care needs, there is already differentiation. And it fluctuates for some depending on what's happening in their life.

I've got high hopes for Chris Packham's new documentary on autistic minds - the first episode did a reasonable job of showing the range and I'm looking forward to the rest.

I can completely appreciate it is uncomfortable to see articulate kids talking about their autism (my DH was recently depressed by hearing v insightful 8 yo talking about ASD on the R4 holly smale podcast about getting her diagnosis age 39 - my 8 yo dd has very little understanding of it).

I have two autistic DDs with different levels of care needs - but I honestly couldn't say who will 'function' better in the end and how we are measuring that.

MN do not appear to care. They even let a long-running series of threads stand which exist for the sole purpose of making discriminatory comments attributing horrible behaviours of the posters' husbands to ASD, even though many of said husbands aren't even diagnosed with ASD!

I am pleased that some of the ableist posts from earlier this morning have been deleted. Makes it even worse when it’s (supposedly) the parent of a disabled child who thinks it’s acceptable to spout such horrible attitudes

Sadly @Sirzy this is often the case, that it is the parents of autistic children who minimise autism in anybody where it presents differently to how it does in their child. I don't know what the answer is. Perhaps more educational sessions for parents after a child is diagnosed, so that they understand autism better as a condition, rather than just their own particular child's presentation? And perhaps more explanation from clinicians about how other comorbidities may be impacting the child so that they don't attribute all kinds of things to autism that aren't actually part of the diagnostic criteria.

I honestly have no idea how those threads are allowed to stand.

MN are not great when it comes to disability though. I got deleted for using the word fuck in my objection to someone saying they thought they had a disability because they didn't like to read the word 'they' used over he/she. Even when I asked MN about it I got accused of a personal attack and they said the poster was given the benefit of the doubt. I was stunned. O wasn't the only person to object to it, and I didn't say fuck off either, so who knows. I honestly don't know why mocking disability is accepted here and those threads about cunty men dressed up as undiagnosed disabilities are shocking.

Rant over, no doubt this will get deleted anyway!

That’s one hell of a presumption to make! Especially coming from a parent of an autistic child!

It’s not odd though. As a previous poster pointed out, two people can have Elhers Danlos Syndrome. One will be unable to walk, be severely disabled by their condition, the other may be a gymnast who just thinks they are blessed to be able to bend so much naturally. Both have EDS.
I have disease called retinitis pigmentosa, for me this means I have tunnel vision but unless you know me well most people wouldn’t be able to tell, other people with my disease by my age are totally blind. But we have the same disease.

This idea that autistics are either non-verbal and incontinent and unable to do anything for themselves or ‘a bit weird’ is also massively reductive. My son is nonverbal, but he is physically able to look after himself and continent and at university. There are a million degrees in between.

I don't think the EDS is the same example exactly although I can see what is trying to be achieved. ASC has so many elements to it that there can be no resemblance at all between people with it.

I used to think like you OP and have posted about it previously. That said, I have come to realise that autism isn't something you have it's something you are. My daughter's support needs are high. Very high (7 years old but with a functioning age of under 2). But it doesn't mean that she is 'more' autistic than others. Her autism just presents itself in a different way alongside several other developemental and neurological issues.

Just imagine the difficulties of aa "high functioning" autistic person who lives with the constant anxiety of saying or doing the wrong thing. Of not understanding nuances and recieving the "looks" from others when you don't "get it". So, if anything, "high functioning" autistic people are likely to have much higher rates of anxiety/mental health disorders which in turn will exacerbate their ASD and an awful repetetive circle just continues. On top of which they have the added stress of masking deliberately or inadvertently.

Autism is autism. The level of support you child needs does not make them more autistic.

theplaceforchildrenwithautism.com/diagnosing-autism/the-three-levels-of-autism

I honestly don't know why mocking disability is accepted here and those threads about cunty men dressed up as undiagnosed disabilities are shocking.

That is exactly what it is! It is absolutely appalling and I know many complaint have been made to MN about it but it still goes on. And then other threads like this on a regular basis.

What's even worse is that sometimes they delete ones like this that at least contain some insightful comments rebutting the ignorance, yet that long-running one that as you say, exists for the sole purpose of using people's nasty husbands displaying behaviour that has nothing to do with the features of ASD to bash autistic people - when many of the husbands being discussed don't even have ASD - is allowed to continue despite there having been multiple complaints to MN and in Site Stuff. And if autistic people post on those awful threads to point out that this is discriminatory and wrong they get attacked and then their posts only usually get deleted! It's mind boggling.

Thank you, I just wondered whether you would have to go privately? How long does the process take?

I don't want this thread to be deleted, I think discussion can be uncomfortable but the more we try the better. We are all dealing with something on this thread and don't have identical shared experiences but why not try to understand each other?

A friend of mine once responded with 'aren't we all' when I told her that a lot of people in my family were autistic.

@youshouldnthaveasked wait time was just over 18m on nhs but I think it's still increased now. Sorry I don't know much about private.

Yes I thought the documentary was quite good and hopefully may stem some of the ignorance.

I'm definitely not saying that an academically able person with ASD is not disabled enough. What I would prefer is for that type of ASD to be called something completely different so there is a clear distinction between those who can speak for themselves and function by themselves with support in place and those who simply cannot function at all without the support of a carer 24/7.

So many articulate people are being diagnosed with ASD now, and with programmes like the new Chris Packham documentary, people are getting a warped idea of what ASD actually can be.

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.

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

@youshouldnthaveasked it really depends on area: waiting times are much higher in some regions than in others. They also fluctuate. For example after a programme about autism on TV often waiting lists will suddenly get longer, as more adults realise they need an assessment. So very many people - especially women - were missed.

Being intelligent doesn't mean we can function though. I wouldn't have got a diagnosis if I could function

What I find very difficult is the rise of TikTok type self diagnosis and positive super power/ ASD is a gift talk. I feel disabled (social model) by being autistic.

I can get on board with neurodivergent and minority model - but that type of terminology isn't inclusive of autistic people who are non verbal or who have SLD.

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

Because obviously everyone doesn't have it. People saying that are completely ignorant and don't understand what autism is. They think that autism is some kind of line on which everyone can be measured about "how autistic" they are. 🤣 Whereas autism is a spectrum, clue is in the name. The spectrum is a way if measuring the profiles of different autistic people. People who are NT are not autistic.

Ds can speak, he is academically able.

he still needs 24/7 care. He has such big issues with food he is tube fed. He has violent meltdowns. He doesn’t sleep. He is highly unlikely to ever be able to live independently.

which of your groups would you like to slot him into?

Also with regards to schools it is often the academically able but need high level of support students who end up out of school due to lack of suitable school places. I am lucky that Ds is in mainstream secondary with full 1-1 but it still comes with massive challenges. If that fails there simply isn’t any other schools in the area which could come close to meeting his needs.

It may be just a poor choice of words but Naoki Higashida (The Reason I Jump) at age 12 was nonverbal and profoundly autistic, and also articulate, sensitive and I would imagine very high IQ. It's not either/or, us vs them.