To find this view re autism frustrating

There are a minority of adults who seem to want to have autism. They act like their normal human traits are part of having autism or things that have nothing to do with autism are traits

Autism is a box though. A box that is portrayed by unhelpful stereotypes and much too broader a range of presentations to be helpful. Why diagnose it at all under your logic?

What’s wrong with feeling this way though? I do feel lucky not to have autism and certainly very grateful that my daughter doesn’t have autism. Why is that wrong? It’s the same as any other disability - I feel lucky that I am not disabled and that my daughter isn’t disabled. That’s effectively what’s being said.

Why would anyone WANT a disability?

I know quite a lot of people with learning disabilities but our relationships are very unequal - I lose them if I talk about anything complex. It relies on me constantly adjusting my conversation to their level. The same must have been true for Einstein in everyday life except with people of normal intellect. Very high IQ alone can make social interaction and social norms frustrating.

The often trotted out Einstein
didnt doeak untill he was 4 , 5 , 6 etc is a myth he waa slightly delayed but was speaking in short senrences by 2.

Alain Turing was the same yet he spent his whole life struggling to socialise and make friends. He is believed to have been autistic.

Of course there is value. There are lots of stories of autistic people who have brought incredible value to the world, because of, not in spite, of their autism and unique talents and ways of understanding the world that derive from that. Have you read neurotribes?

There is zero value in experiencing the world whilst having the 3 traits that bring about a diagnosis to the extent they have a significant impact on life. None.

What is damaging is dressing up a disability that causes significant pain, endless trauma, difficulty, isolation, often abuse and intolerable difficulties as a strength and just a “difference”. My kids would give anything not to have it as would I. The damage it has caused across generations and sectors of my family is beyond hideous.

Thank you - peaks and troughs so far.

The first two weeks were awful, very physical and lots of aggression. He seems to be settling into it now, my arms are grateful!

We get 5 days of holiday club over the summer, an hour away. He’s currently midway through sleeping in for one of them because he was awake in the night.

We’re taking him on a UK holiday in a few weeks and the anxiety is real 😂!

You're entitled to your perspective, of course. I don't see the value in flattening the diversity of autistic experience into a narrow narrative of difficulty and deficit. In fact, I think that's actively damaging. Autism can involve very significant challenges, but it can also bring strengths, differences, and ways of experiencing the world that have immense value—both to autistic people themselves and to society more broadly.

I hear you!

Try attending appointments, emergencies and care with an adult who doesn’t look like he has a disability with NHS staff that are still hugely ignorant about autism. Imagine how even more vulnerable to abuse they’d be if autism was put into boxes and they were in the “mild” autism box some on here want to create.

It’s not a gift if it comes with huge difficulties that impact life significantly. One of my autistic children is gifted, his life is intolerable needing a high level of services. It is absolutely not a gift and as much as I love him he/I would gladly trade what he is gifted at for a life without autism.

Yes, I feel much the same at the moment after some intense meltdowns in public from my almost 12 year old that doesn't look like he has a disability and we are all then judged massively. It's wearing after so long and I can't just pick him up and carry him somewhere these days.

Every autism report is different according to the individual. You can’t be specific and autistic people don’t fit into boxes! Those that are non verbal can vary hugely as can those who are verbal, those with intellectual difficulties can vary hugely,ditto those without, care needs can change throughout life….

And the ability to perceive things in radically different ways that transformed understandings of physics.

Yes I wish my son wasn't autistic. Not bothered if that offends. I have don't have much excitement about him starting school with a smattering of words and not toilet trained and way behind his peers.

Not a gift, not a superpower but there is a school of thought that believes Einstein would have met the diagnostic criteria had it existed then. He didn't speak til 4, preferred to be alone and disliked social norms, he refused to wear sock for example. He also had echolalia as a young child and, of course, his intense focus on complex physics.

Well exactly.
That's why it's important that any diagnosis is coherent, meaningful and specific.
To me "autism" has become so expansive an umbrella that it's lost that. That's why I'm in favour of splitting the diagnosis. It's not about who has more severe needs, it's that the needs and underlying condition seem to me to be completely different in nature.

Diagnosis gives answers and more info for carers, sufferers and professionals.

My dc have significant needs and I couldn’t care less that they have the same diagnosis with others who will also be significant to reach the threshold but are different. Why would I? They aren’t going to take away what they get.Any support is given on need not diagnosis.

Then why bother with any diagnosis? Everyone is just given the label of "additional needs".

Splitting it would be impossible and there would be zero need. My dc have significant needs and I couldn’t care less that they have the same diagnosis with others who will also be significant to reach the threshold but are different. Why would I? They aren’t going to take away what they get.Any support is given on need not diagnosis. Different needs get different support. The diagnosis wait lists are insane as it is and I’d love to see professionals try to allocate boxes accurately. There would be endless wrangling between patients, cares and professionals re accuracy. Even within boxes there will be huge differences as each autistic person is unique.

I totally agree about the harms of stereotyping and putting people in boxes, every child is different and should received individualised support. I'm not at all keen on the governments new "packages" proposal.

But for me, this conversation is really about the accuracy and coherence of the underlying condition itself. I struggle to see how a highly articulate, socially awkward, anxious teenager who is able to mask has the same underlying condition as a child who has profound difficulties understanding language and functioning in the world in basic ways. I don’t see one as simply a “milder” version of the other—they seem to me to be fundamentally different conditions.

I know one suggestion is to distinguish between autism and autism with intellectual disability, but someone earlier explained really well why that doesn’t fully resolve the issue. It risks reducing profound autism to intellectual disability, when the two aren’t necessarily the same. Some children who would be described as profoundly autistic may still have significant—even exceptional—cognitive abilities, but they can’t reliably demonstrate them through conventional assessment or access education in the usual way.
I have a friend whose son is like that. He taught himself to read Chinese, yet he can’t cope in mainstream school because he can’t access or engage with the curriculum in the way it’s delivered. He's non speaking and can't follow basic instructions. That’s very different from simply having an intellectual disability

How do you separate it though? What are these neat little boxes?

If we try to shoehorn people into ever decreasing boxes we aren’t going to help them. We are going to end up with more stereotypes, more stigmatising and more people hate keeping resources than we already have now.

I have worked with so many people with autism, I have a child with autism who will need life long care. All of those children are still individuals with individual needs and personalities. Yet I have still experienced people trying to lump things together based on the diagnosis - I have seen professional reports which are basically just copy and paste because it’s what they think works for that box but it doesn’t work for the child. Instead of trying to make those boxes smaller we need to look at the individuals more and what they need to help them thrive in the best way for them.

It’s not about "knowing more" about an individual child's needs, it's about whether the diagnosis is coherent. I struggle to see how a child who can’t understand language and is non-speaking has the same underlying condition as a child whose main challenges are masking and anxiety. My child couldn't "mask" because she wouldn't be capable of that. They seem like fundamentally different presentations to me, even if they’re currently given the same diagnosis.

And that’s it in a nutshell isn’t it. Autism is not a gift. I’m diagnosed as autistic with inattentive ADD, I am able to hold down a job, attended mainstream school in the 70s/80s but struggled throughout childhood socially, had meltdowns etc. It has had a profound impact on me as an adult and I was diagnosed aged 60. One of the first things I found online was an article which started with “congratulations ” which gave me the rage .

This is totally different to my autistic son who at 23 has never had a job, is socially isolated and needed special education. We are looking at a specialist provision just now which would give him one day a week of mixing with others at £100 a day which is all his PIP, any extra would need to come from Direct Payments

He is verbal but is significantly disabled by his autism, I am not so much.

However a friend has two non verbal autistic adult children who are indeed profoundly disabled but cannot verbalise that.

We should never have removed the Asperger’s label which is where I feel I sit, I still have significant difficulties and it’s no bloody gift.