To find this view re autism frustrating

You're onto one of my pet subjects here (I work in ID services).

We have the policy that if someone has a mild ID and can access mainstream services with reasonable adjustments - we will support and advise staff in those services (allegedly - we do have to push back with depressing regularity). If they can't access mainstream services they would come to us - and we do adapted versions of approaches as much as possible.

For ASD without ID - yep it's a huge service gap and we keep trying to push it and fix it as much as possible. I get particularly wound up when I get asked about my own diagnosis and then some computer system assumes I need easy-read documentation because I'm autistic - I don't, I need you to be clear, not a twat and understand that sometimes I respond in an "atypical" manner - but I'm incredibly bloody literate and quite likely to send you the easy-read back corrected!

It’s just waffle. Inventing a narrative to shut down what people are saying.

Having worked with the families I’ve worked with, the attempt to reframe autism as some wonderful club leaves a sour taste for me.

By all means, many people can lead a happy and fulfilled life with a disability (obviously this is more easily done at one end of the spectrum than the other!), but the language in that particular post is completely ridiculous. No one is feeling “robbed of the warm fuzzy feeling of being superior.” We’re sharing our experiences on a public forum.

But yes I do feel damn lucky not to be autistic or to have an autistic child. That’s based on my experience of the poor souls I’ve worked with over the years. There are a great many things I feel fortunate not to have to deal with in my life, but if anyone says it about autism god forbid. It has to be universally accepted as more of a personality quirk, or even a “gift”, than for what it actually can be at its severest.

These types of perspectives are so narrow.

Of course you can be gifted in some ways (e.g. exceptionally good at maths) but impaired in others (e.g. unable to have a normal conversation, uncomfortably sensitive to loud noises). And these could all be the result of autism!

Which perspectives?

"But yes I do feel damn lucky not to be autistic or to have an autistic child. That’s based on my experience of the poor souls I’ve worked with over the years."

Yes?

I think it's one thing for people with autism to try and see the positives in their condition - I have AuDHD and am freaking AMAZING in a crisis for example - but quite another for NT people to tell us we have "superpowers". The cost of those "superpowers" is horrendously high.

These are the perspectives I find to be so narrow. And also stigmatising

Exactly. I've also come across other people with autism saying it's not a disability but a difference. Good for you that it's just a difference and you're not disabled by it

I don't think I've ever come across any other disability where people have this attitude. I do understand seeing the positives though

Right…

This perspective comes from years of experience. I know one family in particular whose child killed themselves because of the hell they went through living with a severely autistic sibling.

Did you even read the rest of my post?
I acknowledge that there are autistic people on the other end of the spectrum who live happy, fulfilled lives. Bizarrely there are autistic people on this thread not willing to say the same for neuro “typical” people. They apparently have dreary miserable lives that in no way can match the magic that autistic people have access to 🙄

I am extremely grateful not to have any autism in our family. There are autistic individuals living great lives, but being thankful to have avoided the risk of severe autism is not something I’m going to apologise for.

I agree with you to an extent, but the problem with neurodevelopmental conditions is that they are so subjectively experienced and diagnosed. There are no blood tests or brain scans in the autism, DLD, ADHD, dyslexia, DCD etc diagnostic process, other than to rule out other genetic factors.

There is also not medical ‘treatment’. We all know that if a person with medically controlled epilepsy stops taking their medication they will have seizures, just like the person with uncontrolled epilepsy has. With an autistic person we have far less objective information about how support strategies may be helping them and how well they would cope without them etc.

For example, I did my undergraduate with someone who has recently been diagnosed with autism and ADHD. I lived with them for 2 of the 3 years of our degree and we were on the same course. I saw absolutely no differences in their social communication style, their learning style or their sensory processing. They didn’t get any additional support at university, nor did they appear to need any. They had several relationships during this period of time, lots of friends and did all the usual stuff expected of young adults out in the world with few responsibilities. They went on to do a masters, get a good job and get married. They are currently writing a book about their experience of being autistic, they also have a blog. I have no way of knowing or understanding their experience, but I can say that the moved through life achieving the same as their peers, seemingly happy with no additional support. Obviously they have been assessed by a professional and they have identified traits that meet the diagnostic threshold. They must have been very subtle, in my opinion. That is not the same as someone experiencing multiple seizures, being given brain scans and other objective diagnostic assessments and then being lucky enough to find a drug regimen that allows their seizures to be managed effectively.

Well speaking of the mum of the most delightful little human with autism and global developmental delay, i can tell you that I am so lucky to be her mother. Yes there are challenges , yes sometimes it hard, but also getting to know and love her has been of the most enriching experiences of my life. I also have other children- they are neurotypical, . although my autistic child has significant social and learning differences compared to the others, there are also some aspects of parenting her that are actually easier not to mention uniquely joyful.

Minimising the impact it can have on some people is more narrow minded .

No one is doing that though

But you dont speak for all families
My son is 16 and severly autistic
I love him to the ends of the earth and wouldnt be without him
But its not the life i would choose
He can also be delightful
But also has some extremely challenging behaviour

That is lovely for you but the families I’ve worked with would give their child a pill in an instant if it could take the autism away.

Where did you get proof that ‘intellectually she is in the top 0.5% of the country’?

"Obviously they have been assessed by a professional and they have identified traits that meet the diagnostic threshold. They must have been very subtle, in my opinion."

Couple of quibbles with this. NICE gold standard for ASD diagnosis states it should not be a uni-professional diagnosis. In my team (and we're short staffed to fuckery) we manage to get a consensus between at least psychology, psychiatry, speech and language therapy and depending on who can attend - occupational therapy and nursing tend to contribute, review the information and we decide together if it meets diagnostic thresholds.

Also - I'm one of these people who are autistic and appear to really have it together - must mean my assessment was really subtle... nope - I've got my actual ADOS scores and I'm pretty consistently above where the algorithm states you need to score for the threshold to be made (this was dual coded by two professionals as well incidentally). I've also scored an autistic colleague's ADOS recently as she generously let me record administering it as part of my own training - again, high functioning (if we use those terms), doing well in life - still scores incredibly clearly as autistic on the assessments when you dig into it.

(I know there are other autism diagnostic assessments but ADOS just happens to be the one I'm trained in and used in my service - and I've got no bloody chance of them finding the money for me to do ADI-R as an additional at the moment so other colleagues do that part).

I don’t think it does any favours to anyone to make it things are all sunshine and roses. It’s fine to admit it’s shit and it’s unfair and it’s damn hard. I think too often parents are expected to get on with things with a smile on their face and not dare discuss challenges or heaven forbid ask for help.

You can love someone to the end of the world and back while still admitting it’s a hard life.

There are only as many “special” autistic people as “special” neurotypical people. But as someone who is autistic, I think generally there’s not much point being concerned about individual viewpoints. Opinions are like bums, everyone has one and some are better than others!

This is what I mean about it being subjective. Only you can know how those experiences feel to you and you have absolutely no way of knowing how those experiences feel to others.

I don’t consider myself to be neurodivergent, but I would say I experience many if not all of the things you describe here. I have no idea if it is to the extent that you do and neither do you. Like you say, I just get on with it because that’s life and those things need to be done.

It is very difficult to conceptualise, because from the outside, unlike most other disabilities, it doesn’t necessarily stop you doing those things, it affects how those things make you feel and how you experience them.

I agree it doesn't do any favours to make it seem all sunshine and roses. But we are very far from that reality.

Equally it doesn't do any favours to make it seem that it's all a picture of unrelenting misery. That is much closer to where we are at. It's incredibly harmful to allow this narrow perspective to dominate, with blanket statements like "I'm so grateful that no one in my family is autistic".

I think you’re being incredibly dismissive of mental illness. You are very lucky to have good mental heath and I can see why a misdiagnosis was frustrating, but mental illness can be extremely disabling and impact on people’s lives in profound and heartbreaking ways. There is a high prevalence of mental health difficulties (and crises) in neurodivergent people and the presentations can be similar and overlapping.

Equally it doesn't do any favours to make it seem that it's all a picture of unrelenting misery. That is much closer to where we are at.

In society today, this isn’t ‘much closer to where we’re at’!
That’s the whole point of this thread.