To find this view re autism frustrating

[Pleasenomorespiders]

Somebody today tried to argue that autism is simply a 'gift' because people like Einstein supposedly had it, I suppose they're talking about people on the spectrum being more gifted and talented in some areas.
This person must surely realise it's a spectrum and has failed to mention how debilitating autism can be, how much people with it can struggle in every aspect of life and may never be able to have a 'normal' life.

Calling it a 'gift' is nice, they're only thinking about high-functioning individuals who as I say have heightened awareness and notice patterns, artistically or mathematically gifted, or whatever it may be. Autism is simply not 'just seeing the world differently'. Many individuals will never have a job or a relationship.

Would your niece be diagnosed with autism and a developmental delay or just autism because calling all people on the spectrum autistic is misleading when there are so many variables.

I agree with you.

I have two relatives diagnosed with Epilepsy. One works full time, has a family, socialises, basically leads a 'normal' life as their condition is well-controlled with medication. The other has multiple seizures every single day, is unable to work, go out alone or live independently. No one could reasonably argue these people are having the same experience, but I can't imagine anyone trying to tell the first person that they shouldn't be allowed to refer to themselves as having Epilepsy.

The problem I have at the moment, is that the parents of children who are profoundly affected by their autism, are not just being made unwelcome by the adult autism community, they're now facing active rejection and being told that their child isn't really autistic. They're 'just' learning disabled.

It's as if the adult autism groups have appropriated the diagnosis exclusively for themselves, and don't want to be associated with those who regularly trash their family home, are non-verbal, maybe incontinent etc. it's as if the adult autism community is embarrassed to be associated with them, so are trying to dissociate from them.

As if parenting a profoundly affected child isn't hard enough, other autists are making it even harder for them.

As I mentioned earlier, I taught severely autistic children in special schools for several decades. I also have an adult DD who is autistic, academic and successful in every area except the social and anxiety areas. Fortunately she is not in the ranks of those trying to wish away those more severely affected.

There is a huge ‘autism’ industry very invested in the diagnosis of autism, including large charities, many of which spout about ‘neurodiversity’ or ‘neurodivergence’ right up until they are asked what they want then revert to talking purely about autism and ignore all other causes of ‘neurodivergence’ or actively campaign against including them. Of course anything that threatens their position is condemned.

And here we go, while I was writing my post. We've gone from saying that those who manage life to a degree shouldn't be called autistic, to saying those whose autism affects every element of their development shouldn't be called autistic.

The effect of the latter is to dump parents from their support groups.

Autism CAUSES the developmental delay in some people. I've taught children with developmental delay due to other causes. They present very differently from children whose autism caused their delay.

Seeing the lack of support and understanding my friend and her DH receive, on top of dealing with the effects of their son’s autism, made me seriously reconsider having children. I wouldn’t want that kind of life. Then throw in people calling it a gift or trying to minimise your and your child’s experience - I just simply couldn’t cope.

Autism CAUSES the developmental delay in some people. I've taught children with developmental delay due to other causes. They present very differently from children whose autism caused their delay.

I disagree with this. Autism doesn’t cause anything; it is a symptom. Autism presents as a spectrum because it isn’t a single condition but a selection of symptoms of a huge range of different overlapping conditions. It is a bit like lumping everyone who is ‘tired all the time’ into one diagnosis rather than realising it is a symptom of conditions that ranges advanced cancer to slightly low iron levels. But splitting it up into (probably hundreds) of different conditions would mean the loss of power to those who benefit from the joint association - which isn’t those profoundly disabled.

Exactly and where do you even begin trying to seperate the two?

You would have to you would have no choice
Its not a life most of us would choose
But we love our children.

I've seen levels used on a UK Reddit sub. But a lot of people say "I'm sometimes a level 2 and other days a level 1" and of course those who are level 1, 2 or 3 aren't going to be the same as other people with the same level diagnosis

And because DS isn’t learning disabled we have lots of people downplay his autism. They assume because (with full 1-1 support throughout) he managed mainstream school then his needs aren’t significant where as he is actually profoundly impacted in all areas.

there isn’t a one size fits all and we need to stop making people and their families feel like they are in some sort of race to the bottom.

Also there's an assumption that non-verbal autistic children are not intelligent.

However hard we try as teachers and parents, it's extremely difficult to get into the mind of our charges/children. But I'm absolutely convinced that at least one of my pupils was very intelligent. I don't believe he had a learning difficulty. He just want able to communicate it show learning in any way that we know it. And his extreme behaviour (often self-injurious) demonstrated his frustration at not being able to communicate. But he showed his intelligence in other ways

I remember at a parents evening, his mum saying that she half expected that if he ever spoke, it would be to tell us the meaning of life. And I know exactly what she meant. But if she took him along to an autism support group, she and he would not be welcomed.

Yep and it’s frustrating for parents because teaching staff assume they can’t do things you know they definitely can. I had to plead with reception staff for reading books for example because he could read fluently. They looked at me like I had two heads and was totally delusional. By January in year 1 he was on the top reading band. He actually needs to move into reading comp but they’re unsure how because it’s unlikely he’ll fill out the quizzes to progress so again he’s stalled on the top band.

He has amazing capabilities beyond his speech delay but getting staff to understand this is an uphill battle to say the least. They didn’t give him homework sheets until I kept on at them either.

I think the nearest we got was when there was an Asperger's diagnosis. Intellectually able people on the whole were happy to be 'Aspies' and found their tribe amongst others like them.

I appreciate that the history of the Aspergers name needed addressing, but they threw the baby out with the bathwater when they just said 'let's just call everyone autistic', instead of choosing another name for the diagnosis for those who are verbal and not generally intellectually affected.

Exactly. I remember working in reception with a lovely non verbal child very much like you described. One day he started writing numbers completely out of the blue. Then we noticed patterns and realised he was actually writing multiples of 5, or 10. Then he started writing additions and subtractions for himself and getting them all right. He had a wonderful brain for maths he just couldn’t tell us what he knew beyond what he could write.

My DS is like this. They didn’t realise he was so great at maths until he gained an interest in numberblocks. Then they quickly realised shit he’s 4 and knows his 2, 5 and 10 x table. He surprises us constantly. Turns out he also knows pretty much every flag, we had no idea till we saw a Pakistan flag once when out and about and he shouted PAKISTAN. We tried with other flag pics and he knew them all, even obscure ones. Competence should always be assumed. There’s an academic in the US who was non verbal till 12 or so I believe, now has a PhD.

@Cheese55as autism itself does not indicate a developmental delay I believe they are separate. I’ve heard my system refer to her as ‘profoundly autistic’. She has physical delays as well as mental. You can have developmental delays and not autism, have autism with no developmental delays or both. They are separate clinical concepts but often overlap. She is very friendly and affectionate and cute as anything when little. It was sad seeing other parents actually cross the street when they saw her coming.

The biggest problem autistic people are going to face in the very near future is the government and benefits and if autism isn't categorised alot of severely autistic people are going to be screwed over.

And the problem I have at the moment is how girls who mask or late diagnosed black people and women without learning disabilities are being told they don’t really have autism or significant difficulties and needs. That they’re just jumping on the bandwagon and are simply a little bit different.

I would love to know what it is about numberblocks. DS and so many young people with autism I have worked with over the years have been obsessed with it and learnt so much from it!

DS is another flag buff too. One of his current coping strategies is painting various flags of the world!

It goes off need not disgnosis
There is absolutley no way the government despite all the sacremongering is going to remove the disabllity benefits from profoundly disabled children / adults it would be outrageous

Autistic and I'm tired of self-diagnosed types with quirky fashion sense trying to tell me I have a superpower. I really dislike the whole 'superpower' narrative. It isn't a superpower, even if autism comes alongside particular talents (which it by no means universally does) it is not a superpower, it blights your whole life.

Of course you do, I wasn’t disputing that. I just meant that I had to be honest with myself in that I wouldn’t want that life and so need to really carefully consider whether it would be right for me to have children.

Or we're told it's anxiety or depression