ASD…. Should there be another name for a more ‘severe’ version.

[iminvestednow]

Please forgive me as I’m new to this, I have a son with Autism. This is his only diagnosis. He is a beautiful, kind and wonderful son.

DS struggles greatly, although we have made fantastic progress in so many areas he will still never lead a ‘normal life’. He has no concept of friends, money or any social convention, he will need help to get by forever, he is extremely vulnerable.

I’ve noticed recently (great that people are more accepting) a lot of people saying, I’ve been recently diagnosed with autism aged 40 and it’s helped me so much. I think it’s great that people are getting support but does it dilute what severe autism is? Most of these people are competent fully functioning members of society and will never need the kind of help my son does. Should there another term to differentiate?

Thank you @lifeturnsonadime that's what I'm trying to say

@lifeturnsonadime so - more ASD schools, and for kids to stay on the CAMHS list for counselling?

What the heck is an ASD school?

I remember when my then 10 year old son was in the process of being diagnosed me asking the diagnostic team if, were he to be diagnosed, it would be classed as mild autism.

His response has stayed with me, it was 'well it's not very mild is it if it means he's unable to attend school'.

The truth is that if the way in which a person experiences autism is mild, in the literal sense, they would never get to the point of being diagnosed in the first place.

I agree. That poster needs to back off, they’re coming across horribly.

Hope you’re ok @ohioriver

And yet, this betrays a misunderstanding of what autism is. Ignoring people because you think they have "mild" autism (no matter how wrong you are about that), when the reality is that they likely have an awful lot of crossover...is just silly.

NT parents may know more about the outward signs of their child's autism presentation, and even about how to help them cope, but they know almost nothing of the child's inner experience and perception of the world because they can't experience it any more than an autistic person can know about the inner experience of somebody who isn't autistic.

Writing that off because of some fallacious fairy story about autism being a scale is ridiculous, egotistical and entirely counter-productive. It's also, essentially, the very reason that there is almost zero support available for autistic adults.

Autism is, at its core, an excess of neural connections relative to neurotypical brains. Its effects can be very complex, because very little is actually known about the brain itself (relatively speaking), but that's why the diagnoses are merged - they're all the same condition. Everybody who's autistic has that same neural profile. The difficulty comes when people try to put it in boxes to categorise it - autism is almost unique in the medical world in that it results in as many presentations as there are autistic people. Even worse, the bulk of the medical profession is decades behind actual knowledge on the subject because they treat it as a collection of symptoms, which - in a condition which forces masking - is patently foolish.

That's why we're always begging NT folk to listen to us. No, we probably don't know more about your child than you do. We do, however, probably have a lot of useful information that you don't. Shutting us out and ignoring us doesn't help anybody.

Yes better options for education for autistic children and yes treatment for mental health issues, which may be counselling but may be something else.

Do you think children with autism should be denied these thing?

No, why would I?

There's a way to phrase things.

This isn't it.

And even I - the autist - know this.

Better support for autistic children in education isn't necessarily shoving us all away where the NTs don't have to deal with us by putting us in "ASD schools".

It literally means better support for children with ASD to attend whatever sort of school is most suitable for each individual child.

Fuck me that we are still here where the answer is shove us all off in an institution.

You indicated that you felt support should be proportionate and realistic which I took to mean that you don't think that all people with difficulties should be supported. I wondered if this extended to basic human rights, healthcare and education or not.

Where do you draw your line as to what is proportionate and realistic then?

I think this thread shows why the autism diagnosis doesn’t really work any more.

Better support for autistic children in education isn't necessarily shoving us all away where the NTs don't have to deal with us by putting us in "ASD schools"

That's a good point. I knew I was uncomfortable with what cookie had written, that is the reason.

There is a place for specialist autism schools but not for every child with autism.

The difficulty comes when people try to put it in boxes to categorise it - autism is almost unique in the medical world in that it results in as many presentations as there are autistic people.

And this is why boxes and terms like high functioning or Asperger will never, ever work. And why the experts term it all ASD. And then let those who need to know the details and care and support needed. It’s fuck all to do with anyone else, if you need to know, you’ll be informed. If not, accept it and STFU whining because you don’t get to pack someone else’s issues in a nearly little box that makes you feel better.

For everybody who's decrying self-diagnosis...please consider that there's a very good reason it happens - which is to say, the 3-4 year waiting list, and there is almost no way to accelerate the process. That's a deterrent right there. Without a bit of luck and serious insider knowledge, a private diagnosis costs £1500-3000, which very few people can afford.

So...next time that you feel like crapping on somebody who's self-diagnosed so they can start learning coping strategies from a supportive community of similar people and ask for accommodations from the people around them, please take a moment to show a bit of understanding for a shit situation that's often inescapable without it.

In an ideal world, the system wouldn't be failing autistic people as woefully as it does. This isn't that world, though, so please...show a bit of empathy (ironic, eh?) instead of writing people off or insulting them.

neat

"Yes that frustrates me too ,people can only speak for themselves and their needs they can't speak for the needs of everyone with autism."

It annoys me when some people with autism say that they understand my son ( autism and severe learning disability) better than I do. I am happy to learn from other people with autism but they do not have the understanding of him that I do.

YES! I’ve thought the same for so long, completely agree. There is SO much variation in what it does and what it’s like to live with.

The only autistic person I’ve known closely was an adult who had violent outbursts/meltdowns and did eventually end up in trouble with the police after horrifically abusing their partner and leaving them traumatised.
And yet it’s all just the same. ‘Autism’. That’s it.

It isn’t fair that so many lovely souls who just happen to have brains that work differently get lumped in with associations like that because it’s not the case at all.

The problem is lots of self diagnosed people are dominating autistic groups etc and speaking for us/our children and sadly what a lot of them have to say isn't worth the time it takes to read it. It's influencing vulnerable people and doing nothing to help those who are autistic.

I understand what you say about wait times, there was a period of a few years for me between realisation and assessment (I did have to go private in the end) and for those years I 'suspected' I was autistic. I didn't self diagnose and I didn't try to speak for or shout down autistic people, I say back quietly and learned as much as I could. Coping mechanisms can be learned without proclaiming one is autistic.

I have very little time for people who self diagnose with anything tbh.

And you can't counsel me out out of being autistic

All counselling did for me was tell me how much of an issue I was for everyone else and how I needed to mask better.

Not at all.

All it shows is that many people are ignorant and education around autism needs to be better. It shows that some people can’t listen and learn. It shows some people think they know better than the experts, which happens on every issue ever, they are usually the most ignorant on the subject. It shows some people think it’s a competition. It shows an ugly side to many people.

That is interesting! I knew that previous editions of the DSM (Diagnostic and statistical manual of mental disorders) had - I think - FIVE different conditions which are now lumped together into one condition, ASD. I always thought it was an unhelpful decision. The clinicians diagnosing my child explained it was supposed to make it easier for a diagnosis to lead to support; but it seems odd to deliberately ignore clinical information. When I pressed them, they said if he'd been diagnosed a year before they'd have said Asperger's.

I suspect there were political reasons for the name change. Dr Asperger's history has been reexamined and somewhat discredited; plus one of those five conditions was greatly associated with Wakefield's " research" - does it even really exist?

Aside from that, I think the word "spectrum" is poorly chosen because it suggests a simple scale from Very badly affected to Hardly affected. And while there are people much more severely affected than my DC (and some, I suppose so slightly affected that they cope undiagnosed until adulthood) ASD has more variables than just worse/better. I think of it as a horrible pick'n'mix stand.

My experience is that the families of those with profound autism have Bern silenced and if he spoken out bullied by the actually autistic community snd their families.

Since the autism dx was changed to include aspergers etc a group of autistics perpetuate that they speak for all with autism as they have autism. The problem is that those that are able to advocate for themselves usually hVe very little understanding of what profound autism is (as has been demonstrated on this thread by the idea that these are all happy individuals with no anxiety from life and no demands placed on them).

The umbrella dx means that those who would had previously had little access to funding now are included in the funding/ services that were designated for people with profound autism. By separating out the dx again which I believe will happen this will impact their access.

There are now groups who advocate that autism is neurological difference and not a disability. There are many memes etc. This directly impacts anyone who requires support as if this attitude was to "win the battle" services would be slashed with the excuse that they don't need to be made.

Medical language should be used znd not silenced or replaced with euphemisms. Professionals should be able to use the correct language without worry of causing offence. I posted an article that discusses this earlier in the thread.

For those who say functioning descriptors are no ones business but professionals etc show little understanding. When someone has profound needs it impacts everything znd carers have to be able to depict their needs to everyone who may come into contact with them.

The removal of classifiers such as high/ low only serves to help those of "high" functioning and not those who would be low. Why should people who advocate for this group not be able to have adequate descriptors and diagnosis to describe their loved ones presentation because it offends or is seen to minimise others?

People with profound autism are clearly more disabled that those who sometimes function at x level and sometimes y level, who can sometimes do this but sometimes not. No one who is the latter group would swap places with a person with profound autism.

It isn’t fair that so many lovely souls who just happen to have brains that work differently get lumped in with associations like that

What the fuck

It's not the diagnosis that is failing people. It's the support that is required for individuals.

diffculties gaining a diagnosis dont make self diagnosis right or helpful. It certainly doesn’t give people a right to take away from the experiences of others.

it is agreed (Gp and mental health practitioner) that I likely have autism, i am on the waiting list for further investigation. But all that means is I am suspected of having autism I can’t say I do because we don’t know that. Me self diagnosing wouldn’t help anyone. You can still look at suggested strategies without claiming a diagnosis.