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.

You will never get an autism diagnosis for just being a bit awkward and making lists.

People thought it was fine and dandy to exclude women, girls and people of colour before. Some people would like to revert to those days. Most in the field thankfully don’t.

Autism isn't only a disability , it's a fundamental part of who someone is- it's to have a brain that works differently. Presenting that as fundamentally tragic or less desirable, is a comment on the person.

There are a lot of people on this thread who only see autism through a narrow lens of problem and deficit , I don't think that remotely reflects the complexity of autism and autistic people's experiences and capabilities.

Feel however you like- that's your own business, but maybe don't go around expressing it to disabled people of any variety ? Or society at large? How do you think stigma works ?

I think it would be equally appalling if you went up to a person with downs and said "I'm so glad I don't have downs", or the mother of a downs child "I'm so glad my child isn't like yours!"

I mean surely that's basic common sense.

I assume you’re referring to Uta Frith?
What she said is that some people (eg late diagnosed women) need help, support and a diagnosis iirc. She doesn’t think the diagnosis of autism necessarily fits this group though.

“This matters because diagnoses shape treatment, identity, and support. A wrong diagnosis can lead to the wrong help - or no help at all,” she said.

Yeah, if we split the diagnosis can I NOT go with the online loud crowd cos they do my fucking head in and cause more harm than good. Please?

It means there's very little space for those of us who function OK generally, are diagnosed (sometimes later in life) and just struggle to get on with things without it being our entire identities - we don't fit in anywhere either. To such an extent I seem to be acquiring a role running an unofficial not-batshit-bonkers separate ND staff support network cos the main one is a lost cause.

No one is going up to someone in the street and saying things like that.

This is a discussion forum with faceless names. People are discussing their opinions on it and are quite free to say they are glad their child isn’t autistic whether that offends you or not.

Are you quite honestly asserting that if someone offered you a cure tomorrow for your child’s autism that would allow her to live a full and independent life, that you wouldn’t take it because it’s a fundamental part of who she is?

I believe earlier you proudly declared you were happy to shout it from the rooftops?

People are free to say whatever they like, and I am free to point out how utterly damaging and harmful it is to promote that kind of ableism and stigma. Not to mention a false and flattening account of the realities of autism and the lives of autistic people.

Maybe set up your own group ?
Im not being sarkey because i stay away from the online loud group who feel they can speak for the entire spectrum too
I have found support from the groups for parents and carers of children who are severley impacted by their autism and largely non verbal as that describes my son
The internet is a big enough place for different types of autism communititis
And im sure you attract like minded people.

No not just her but online activists who pick apart and dismiss the suffering of autistic people.

Uta Frith ignores decades of peer-reviewed research, dismisses how autism
presents in women and girls and conveniently ignores that the male focused diagnosis process has lead to so many being late diagnosed women and girls- that and the insane wait lists.

https://www.autism.org.uk/blog/challenging-misinformation-about-autism-using-evidence-to-correct-false-claims

www.autism.org.uk/what-we-do/news/our-response-to-professor-dame-uta-friths-new-paper

Yes…

So, as I asked, are you saying that your daughter’s autism is such a fundamental part of her personality and personhood that you wouldn’t take it away from her if you could?

Why is it fine to say something like that to someone online but not in person?

I don't think the hypothetical itself is well defined. What does it actually mean to "take away" someone's autism? Which aspects disappear, and which stay the same? Their perception? Their cognition? Their personality? Their interests? Their way of relating to other people? There's no answer to those questions.

If the question is simply whether I'd want to remove the things that cause my daughter distress or make life harder for her, then of course I would.

But autism isn't like a broken bone or an infection that sits apart from the person. It's deeply intertwined with how someone thinks, experiences the world, communicates and develops. So what, exactly, would it mean to remove it completely? What would be left unchanged? I don't think there's a coherent answer to that.

So no, I wouldn't wish away my daughter in exchange for a hypothetical different child. I want her to have every opportunity to thrive, with as few unnecessary barriers as possible. And tackling stigma born of ignorance is part of removing those barriers.

Yet you has just stated they have been broadened in your own post.

Why is it always autism ?
Im not overjoyed that my oldest son hss tyoe 1 Diabetes and has to inject himself 5+ times a day to stsy alive
If somone says they are glad their child is not Diabetic im not offended
Just as im not offended when people acknowkedge how hard it is for me to have a non verbal severly autistic son and are greatful their own child doesnt have the same disabillities

People do say it in person.

My sister has raised 2 kids, but when we talk about the lack of sleep we still get with an almost 10 year old she has for example said “oof, rather you than me!”

We also get “I couldn’t cope with that,” the occasional “not for me thanks,” a stranger told me on Sunday it looked “like hard work.”

They’re not talking about the child. They’re talking about the situation, and as the person in it - absolutely fine with that.

If anything I think it validates how bloody difficult it is.

Say something like what?

Diabetes isn't a meaningful comparison. Diabetes is a disease that affects a specific physiological process in the body and can, at least conceptually, be separated from the person. It's relatively easy to imagine who your son would be without diabetes: the same person, just without the disease.

Autism isn't the same. It's a neurodevelopmental condition that shapes how someone perceives, thinks, communicates and experiences the world from the earliest stages of development. That doesn't mean autism can't involve profound disability or immense challenges. It absolutely can, and I don't think anyone should minimise that.

But because autism is so deeply intertwined with a person's development, it lands very differently when someone says, "I'm so glad my child doesn't have autism," than when someone says, "I'm so glad my child doesn't have diabetes." The former is much more easily heard as expressing relief that a child is not that kind of person, rather than simply relief that they don't have a particular medical condition.

A closer comparison would be Down syndrome, and I'd have exactly the same reaction to someone saying, "I'm so glad my child doesn't have Down syndrome."

Oh that's totally fine! Yes, feel free to comment on the situation (lack of sleep etc) just not the person :).

Oh yes thats annoying
Ii have no bloody choice to cope.

“So what, exactly, would it mean to remove it completely?”

It means exactly what I said: for her not to be autistic. Because every family I’ve ever worked with would sure as hell cure it in a heartbeat. Your child wouldn’t be devoid of personality without autism.

By all means you love her as she is now and separating which things she does are just her, and which things are a part of the autism may be a grey area. But the concept “would you cure your child of autism if you could?” isn’t a difficult question to ponder.

Put it this way, if there were a way to guarantee or at least seriously minimise the risk of autism in pregnancy, the way folic acid minimises the risk of spina bifida, I’d sure as hell be doing it. I’d do everything I could not to bring an autistic child into the world because you don’t know where that child is going to lie on the spectrum and how capable they are going to be.

I have ADHD and ASD.
I am high functioning, high IQ,married with children and hold down a challenging high level job.
My kids are the same... daughters partner has ADHD and they have decided against having any children.
Whilst its possible any children they could have would be as majestic and hilarious as us, they may also struggle hideously and possibly be non-verbal and need lifelong care.
Theres no way of knowing.
They dont want that- so they choose not to risk it.

My oldest son ssys that too
He loves his brother to bits
But growing up with a severly autistic non verbal brother has been hard for him.

To be fair I never appreciate “I don’t know how you do it”

Lack of option. Every other parent would find a way to do it too, they just don’t have to.

That’s so sad. Of course, you love them unconditionally, but no one would choose this for their child OR themselves, despite what some may claim.