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.

The damage some (not all) of the non-autistic parents on this thread must be doing to their “high-functioning” autistic children must be immense given the sheer ignorance of some of the comments.

the inability to recognise the struggle of a high functioning child, particularly a teenager, will have life long consequences.

These poor children.

Yes on would hope we'd have learned from all of that and welcome advances in knowledge that are based on actual evidence and statistically valid studies. Nobody is saying the current system is perfect, but clearly it's a vast improvement from such pseudo-science and leaving many autistic people with a lifetime of misdiagnosed mental health problems when actually they are simply autistic people who've had no diagnosis and therefore no support.

Even if it was doable, nobody has any incentive to do so as there is zero support for adult autistic people who are what people here seem to want to term "high functioning" (🙄🙄) anyway. So what would be the point?

Clinicians are highly trained and not stupid and assessments are thorough so in any case I do not buy your idea that people could "fudge" it, personally, even if a tiny minority for some very bizarre reason wanted to.

Yes. And it's the kind of damage that creates wounds that can never be healed. Lifelong trauma. It was bad enough when diagnoses were missed because there was no information and so much ignorance. In those circumstances - even though the damage can't be fixed - the autistic children who received no support could at least in many cases forgive what was done to them, when they became adults. But to knowingly behave like this when your child has a diagnosis and all of the information and knowledge is there to access, to do the damage anyway because they are able to sometimes "appear" to be "normal". Heartbreaking. Poor kids. 😔

I so wish people would educate themselves more regarding the appropriate language and terms to use regarding autism.

"High Functioning" and "Low Functioning" labels are incredibly harmful. There is no "mild" or "severe" autism. You're autistic or you're not. I have an autistic husband and 2 autistic kids. Their needs are all vastly different in some places, and very similar in others. That's what the spectrum represents, not the "levels of autism."

I'm not autistic, to my knowledge. So to learn how to better support my family, I have joined autistic led groups and am learning through them.

But to knowingly behave like this when your child has a diagnosis and all of the information and knowledge is there to access, to do the damage anyway because they are able to sometimes "appear" to be "normal". Heartbreaking. Poor kids

it’s negligence and it’s disgraceful.

You could also probably get your self admitted to a psychiatric hospital if you researched it. You understand that's not the same as an assessment of a young child right?

Yes but we don't carry them around or quote them when we say oh I'm autistic / my child has autism.

We don’t need to.

I'm not autistic, to my knowledge. So to learn how to better support my family, I have joined autistic led groups and am learning through them.

Im finding it tough to find a community online. There's a lot of global groups so the language and culture is different, then there are self diagnosed or #actuallyautistic which I'm a bit wary of, it's weird to have felt alienated from the NT world and now to have to try to find my way in the ND one!

More diagnosis due to better awareness (from parents and professionals) and less stigma around diagnosis. You could have your dd assessed for autism if she has the relevant traits and it is significant enough to warrant a diagnosis and yes she may get a diagnosis - if she is autistic. I don't really see your point? Do you feel she doesn't currently need a diagnosis despite having traits? Fine it may change it may not. She may be learning to mask as most girls do so it may be later down the line that you get to learn wether your blasé attitude to diagnosis has screwed your child up.

It’s not the same underlying condition though. That is not a controversial statement for anyone working in autism research.

Look up simplex and multiplex autism for starters.

And as for being able to fudge an autism assessment. Words fail me.Do tell us how?

Comments like this make me wonder why so many people try to make things a race to the bottom.

not autism related but the principle is the same - when Ds was critically ill as an 8 week old I went to the parents room for a coffee and a break. Another mum was in there in floods of tears sat on her own - so I checked in with her and comforted her, it turned out her son had just gone down for some teeth out and she was scared. Me supporting her didn’t take anything away from my own issues but at that point could help someone else so why wouldn’t I?

same applies to most things in life, we don’t need to think “but I have it worse” all the time. Everyone has struggles and everyone can benefit from the right support at the right time.

Self diagnosis is valid. The #AA identifier has been misused somewhat by people misunderstanding the intended use (I.E "my #AA child" - AA is a self identifier only). As with anything there will be people who aren't genuine, using it for "clout" or whatever. The autistic led groups can be a massive eye opener for allistic people, the communication is so different, and autistic people are often attacked for "being rude" when they're literally just giving the info requested or some insight. I tend not to actually post, and just quietly follow. I read the comments on posts that are things I may need help with, and I learn.

Sadly this comment is consistent with the numerous ableist comments on this thread which basically dismiss or minimise any struggles of “high functioning” autistic people.

and it is a view condoned by MNHQ, sadly, as they allow the continued vilification of autistic people on the “support” platform threads.

we are only going to make a difference by pushing back every single time. It’s exhausting but necessary so the next generation do not get exposed to the same bigotry and prejudice.

Absolutely this. Thank goodness for people like you. Your family is very lucky to have you, you sound like a wonderful wife and mother.

Self diagnosis is valid.

Is it though?

But there isnt a common language - I never use allistic and neither do any of my colleagues or peers. And self id can be valid but it's not always valid or accurate or helpful. Even amongst autistic people there is dissent.
There's no right way to be autistic or to refer to yourself etc, but sometimes these polarising groups and movements leave people behind.

My autistic DD is 9 and last year she didn't go to school at all, for various reasons she couldn't cope. She started a new (mainstream)school in September and had 100% attendance until Christmas. She was so happy (although struggling with areas of life as usual) and loved school and her friends.
Sadly it all fell apart over Christmas and she is clearly in burnout, very rarely gets dressed or leaves the house, even though this means missing school, her friends and her hobby which she is passionate about.
She is devastated as she wants to do all those things but her anxiety and sensory issues have stopped her life for nearly 3 months now.
Yet she is 'high functioning'.

Self diagnosis is valid.

It's not. It's nonsense. Nobody self-diagnoses other serious medical conditions so why would it be valid in this instance? Completely mad and ridiculous anybody would want to. Perhaps there are a small number of highly visible attention seekers on social media doing this alongside the many other insane things that go on there but people should have the sense to ignore that and stop clicking on it and giving them air.

In my experience, the parents most strongly criticised in this way are very often autistic themselves. Failures to recognise struggles can be because those struggles are what they perceive as normal, as they were the same for them.

Personally if I see things using langage such as “allistic” (what does that even mean?) or “actually autistic” I tend to quickly move past them because 9 times out of 10 it seems to be very much focused on a very narrow way of thinking and looking for arguments with everyone and anyone if they point out that autism is a disability or that their lived experience doesn’t over ride the experiences of others who may not be able to vocalise their experiences

Sadly this comment is consistent with the numerous ableist comments on this thread which basically dismiss or minimise any struggles of “high functioning” autistic people.

and it is a view condoned by MNHQ, sadly, as they allow the continued vilification of autistic people on the “support” platform threads.

we are only going to make a difference by pushing back every single time. It’s exhausting but necessary so the next generation do not get exposed to the same bigotry and prejudice

Yep. All of this. Completely exhausting but we do have to push back against this ignorant nonsense every single time.

Would really help if MNHQ understood the Equality Act though and deleted the vile threads you referred to. They've been asked to by the autistic people on here. Always say they'll "look into it" and "get back to us" but never do. Horrendous. It'll come back to bite them at some stage, I'm sure.

This.

Self diagnosis is bullshit.

@Shelefttheweb

In my experience, the parents most strongly criticised in this way are very often autistic themselves. Failures to recognise struggles can be because those struggles are what they perceive as normal, as they were the same for them.

I'm the opposite. I recognise my children's needs and struggles because I can relate so well.