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?

Means testing disabled people won't work for as long as PIP/DLA is seen as proof of disability across the UK.

@Thereisnolight that won't work because you need pip to access many other types of support.

For example I can't get a blue badge without pip.

I can't even get one with PIP but that's another story.

(Well ADP in Scotland but the theory here is the same)

Really? My wife got a blue badge about six months ago (physically disabled), and she hasn't been in receipt of any benefits at all for over 20 years.

I'm no expert on the PIP/disability/etc systems, but that sounds a bit dodgy to me. Might be worth looking into it a bit more if that's the reason you were denied.

You seem to really have it in for this woman.

She's a model, it's her job. She clearly doesn't mind it. Many autistic people would not like it, she does. So what? Doesn't make her any less autistic.

Has she claimed to be the face of autism?

I'm no expert on the PIP/disability/etc systems, but that sounds a bit dodgy to me. Might be worth looking into it a bit more if that's the reason you were denied.

It varies from council to council, unless you score enough points on PIP to automatically qualify.

"I’ve just been told that as my son is turning 16 in March (despite being obligated to attend school I will now be charged £60 a day in taxi fees)"

You cannot be charged more than a non disabled child would for attending their local school so generally the cost of a bus pass. Anything else would be discriminatory. LA try this shit all the time.

Speaking as a parent of a child with autism...

Autism has jagged profiling - that means the individual can have strong skills in some areas and not others. If we start with the individual and look at what their needs are in each area rather than lump them into crude categories of severe/not severe that imo is the best way of approaching autism.

So my son has autism, is verbal and academically does well... But he can still have meltdowns which lead to others being hurt and him escaping school, exclusions etc.

If you classified him as 'Non-severe' I think it would start to be seen as bad behaviour as his autism 'isn't that bad'. This in turn would lead to him not getting the understanding, help and training he needs.

The previous school, which basically treated it not as autism but bad behaviour, almost permanently excluded him. I had to go PT because his meltdowns were so frequent I was needed frequently to calm/remove him from school /look after him during exclusion. IMO this is the logical conclusion of saying he is not a severe case so this must just be behavioral.

When he moved schools they recognised it as autism and he gets help with social skills, emotional regulation etc which reduce the frequency of meltdowns but he still has a few major episodes at school a term. He is likely go struggle in communication and personal relationships to some extent all his life.

So whilst I understand your frustration that people don't understand your child's needs because they have a limited understanding of the complexity of autism, I don't think a binary severe / non-severe autism would help.

And the high functioning people with DS (and their families) are campaigning for reduced access to abortion, and presenting this false narrative that their mild form of the disorder is what people with DS are like. Same as how people with mild autism are presenting this false narrative that’s what autism is like.
@Schlaar thank you for this it really pulled me up and made me rethink. I hadn’t thought about things in that way before.

I know PIP dosent "officially" depend on employment,saying that I have talked to people who have been told since they can work they are not regarded as that"disabled" by the DWP assessors, even with doctors letters and medical paperwork, or if they drive a car or they are carer to a family member. None of these reasons should ever apply to someones PIP claim yet they are used against people.

She said she represents autistic people on the ITV, it was the interview when she became the ambassador of Caudwell, autistic charity, followed by National Autistic Society.

I'm no expert on the PIP/disability/etc systems, but that sounds a bit dodgy to me. Might be worth looking into it a bit more if that's the reason you were denied.

It's area dependent. My area has being in receipt of pip at low rate for mobility as the requirement. I did look into it.

Also. My reasonable adjustments are dependent on me being "registered disabled". How would you suggest I prove my disabilities without using my pip? What other "register" of disabled people is there?

Autistic people needing to be protected from inpatient is one of the reasons why things are far better now. My daughter has had additional support and protection from inpatient and will unde adult. Downgrading her diagnosis woukd put her at huge risk.

This thread is really shocking. It’s no wonder women and girls are going undiagnosed and the impact of autism is just not understood.

Do you have a link?

I think if I remember correctly High functioning initially just meant anyone diagnosed with Autism who had an measured IQ over 70. It slowly morphed to be more about what they were/weren't capable of doing independently but it was mostly to do with IQ. So you could actually be high functioning but requiring large amounts of support. I found this TED talk really interesting

I like the new system of using levels. A person can have ASD1, ASD2 or ASD3 depending on how much support they require. I think someone shared a graphic earlier in the thread to help explain it. ASD3 is that 'severe' label that you mention @iminvestednow .

As an aside, those who are blue badge less and need one, please don’t give up. It took two years to get ds’s BB and we had to approach our MP for support with our application in the end. He isn’t a borderline case and it was fairly tedious.

There isn’t a new system of levels. We’ve certainly not experienced it and have a child with a recent diagnosis and 2 currently going through.

People with more needs shouldn't have to limited their language and diagnosis (not use severe) so that those with less needs are validated znd don't feel that their needs are minimalised. Not using descriptors like severe etc minimalises people with severe autism needs. Why should they be hindered so that someone with fewer needs can feel better about their dx?

You really despise so-called high functioning autistic people, don't you?

I agree with @Hardpillow how are we to access education, health or welfare if we can’t describe our needs?

@BytheSea6773 I think DSM V has levels (so not that new!) but I agree they aren’t used and weren’t part of our dx as far as I remember.

No I love someone with considerable needs and don't want to limit the language I use in order to make someone with less needs feel better about their diagnosis.

It's not so we can feel better

It's so it's recognised we still have life quality support needs to.

No one is saying you have to change the language you use to describe your son's needs.
You just don't get to decided if some one else is functioning at a high enough level to not deserve accommodations and support as well.