To find this view re autism frustrating

Completeley agree with you
You also get some people who have self diagnosed
Who beleive they have the authority to speak on behalf of the entire spectrum.

Or effectively fetishise it by dressing it up as a superpower. I think it is this narrative that has led so many to ‘self diagnose/ID’ as autistic, because the TikTok generation have seen it promoted there as something to aspire to rather than embrace amongst diagnosed friends.

I was trying to discuss post doc research with my supervisor, looking at late diagnosed women’s experiences and collating a collection of memoirs/essays from some I have encountered. She said ‘ooh super, most of the department think they are the spectrum. You could call it “neuro-spicy women look back” or something and they could all contribute.’ I nearly heaved.

We do not like ‘neuro-spicey’, in our family as it suggests autism is fun and makes us special, which has certainly not been our lived experience of autism or ADHD - and I absolutely have no truck with the self-diagnosed individuals who identify under this label. If you suspect, seek a referral, and if confirmed then come back to me. I didn’t used to be that way, but I am definitely there now.

I agree with this too, yet I have to say if I could take my DS’s difficulties away without changing his personality I’d do it in a heartbeat.
There is a lot of suffering in his life that is very, very difficult to see. I would do anything to take that from him but I don’t know how or even if it’s possible and the help just isn’t there.

My issue is currently we have some well known people who openly talk about their autism, which is great for them and the fact they have managed to forge successful careers on TV is wonderful. But often the way the message is presented, or interpreted by wider society is “well if they can do it why can’t you/your child?” And it does give the idea that it’s something much simpler than it is.

everytine someone publically talks about their autism or adhd I get very well meaning people sending me links to it and things but it really doesn’t help. It’s a tiny part of the autism community.

Speaking as a parent of an autistic child with global developmental delay, what I find demeaning and harmful is the stigma. The attitudes - so readily and easily expressed on this thread - such as , I am so lucky not to have an autistic child, so grateful that there is no autism in our family, those "poor souls" etc. Yes my child has significant social and learning differences, yes there are challenges, but she's a whole person, just as delightful and valuable as any other child; her existence is not a misfortune.

I think for some, especially those who have no direct experience of autism, the advocacy has painted a misleading picture of the positives and has minimised the negatives.

DS has autism and I find the ‘superpower’ trope insulting, demeaning. People do come out with it all too often unfortunately.

I’m not offended by what you said, in any way.

We love our complex needs son to death. He’s hilarious, engaging, and can be the happiest and most wholesome boy. He can be loving, caring and hugely rewarding. I’d defend him with my last breath.

But. There’s absolutely no denying our life is difficult. He breaks things, bites, my arms are covered in scratches. He shouts, throws things, slams doors until they break, self injures and headbutts walls. He sleeps terribly. He’ll never live fully independently, and planning for his adult life carries a lot of pressure.

I don’t think it’s in any way offensive to say that isn’t the life you’d choose, or to be grateful you don’t have it.

It doesn’t mean we love him any less, but I don’t expect someone not living it, who doesn’t know him or love him, to see it as something they’d wish for.

I completely disagree with you. It really is much closer to where we are at.

Autism is incredibly stigmatised - particularly in childhood.

There have been advocacy efforts - especially on social media - trying to challenge these perspectives (hence the whole 'autism is a superpower trope' but the backlash against that is immense, and it's done very little to combat the underlying stigma that overwhelmingly prevails in cultural attitudes.

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.

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.

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".

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.

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!

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.

"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).

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

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.

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

No one is doing that though

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

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.

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.

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.

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

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