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?

Use whatever language you want, no one is stopping you. No need to shit on everyone else though.

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.

For me, it's that you don't need the same level of care needs, in any world, as a severely disabled autistic person and that should be clear

And I am aware of that. I'm not stupid.
But not every high needs autistic person will need the same support ethier.

I'm not sure why that is so hard to comprehend that it isn't about wanting the same level of support.
It is about both scales deserving support for their needs.

Hold on, so you're OK with using severe autism to describe people who have severe needs?

Many times in this thread posters have been opposed to descriptors because it "minimalises" their needs. Ie if someone is described as severely autistic then their needs are seen as that bad because it isn't severe.

Not using descriptors for people with severe needs does impact on them in many ways. This shouldn't be done just because someone with fewer needs wants to feel that their needs are valid.

Profound autism is being used now by professionals to distinguish between those with severe needs znd those without. It is highly likely that the dsm will change to reflect this. The Lancet commission even highlight its need.

autismsciencefoundation.org/the-lancet-commission-formally-recognizes-the-term-profound-autism-2/

This article discusses the sensors hip of language with regard to autism and details why it's vitL that people can use the correct language.

onlinelibrary.wiley.com/doi/full/10.1002/aur.2876

Just a warning - you may find that free transport disappears at 16, although if they are acting legally the LA should pay again from 18.
It disappears in most LEAs. It’s an absolute racket as public transport (for example) is not a viable alternative.

Interesting @Hardpillow thank you for posting. I have actually started using profound - as severe is so political now.

Really? God I wish I had known that at the time.

It varies from council to council, unless you score enough points on PIP to automatically qualify. this is nearly right but you can (I kid you not) score TOO MANY points to qualify. This is the situation we were in and I was told (honestly) that because ds couldn’t leave the house without me and I had kept him safe that I could continue to do so so didn’t need a blue badge. My MP sorted it out but my advice is, that you should apply before your child is transferred from DLA to PIP and if that isn’t possible apply and keep going. We only use ours for an hour twice a week for an activity but for us it is life changing.

Nb I was told to use “significant” when describing ds’s disability. He needs 1:1 at all times, and help with all parts of his life.

I didn't know that @Itisbetter it's shocking.

I need pip - not for the money (I get low rate mobility although I expect I'll get high rate at some point) but I need it as a gateway to other support.

I am appalled at the idea that I would be denied that support on the basis of my earnings because I can't buy the support that pip is a gateway to. So I'd be absolutely fucked.

Blue badge being the most obvious example. I wouldn't be able to leave my house then. I'd be stuck.

So what do you suggest people who need to be in recept of DLA or PIP to receive benefits do exactly?

Yup - I have to reapply for the blue badge for ds1 and have this nightmare to navigate again. Too disabled to get a blue badge. Couldn’t make it up.

The bulk of disability benefits are means tested- ESA is the big one.
DLA(child)/PIP (16+) are peanuts and only a top up that is not means tested.

But sometimes people need to be in receipt of them to access support, and @Thereisnolight thinks they should be means and needs tested (although pretty sure they're already needs tested).

Yes, all disability benefits are needs tested. PIP is only one not also means tested, and it’s not very much as the needs it tests are significant and commonly cost far more than the benefit to get the support for those needs.

On a purely monetary basis wouldn't be cost effective to means test dla and pip because the vast majority of people on these benefits would not be the highest earners.

With pip is there no automatic entitlement like you get with high rate dla? My son has had a blue badge since he was 3 due to high rate mobility (smi) he'd be really stuck without it.

@Hardpillow

With pip is there no automatic entitlement like you get with high rate dla?

No. It's based on points, not award.

You need to score 8 points or more on 'moving around' or 10 points or more on planning and following journeys.

There is no longer an automatic entitlement if you get enhanced mobility.

I'm in Scotland where you need 10 points or more on moving round or 12 on planning and following journey.

I actually scored 14 overall so get enhanced mobility, which means I can lease a car but don't get a BB to park it!

DLA is only for under 16s, it helps mitigate the cost of raising a disabled child. At 16 your claim either lapses or is converted to PIP.
PIP (personal independence payment) is to cover the additional costs associated with being disabled. It is an attempt to level the playing field so disabled people are less disadvantaged by their situation. As such it isn’t means tested as it is an attempt to negate the effect of disability.

I think most (all?) people who would have claimed ESA now would claim UC. UC is of course means tested and additional money can be claimed as part of your UC if you are long term disabled.

@gliiterryballs that is absolute madness. I was under the impression that the pip process was easier than dla from other groups I am in but this has made me double think. That's really is crazy. How can they acknowledge you need a car but no give you the opportunity to park it.

POI

You need to score 8 points or more on 'moving around' or 10 points or more on planning and following journeys. I think it’s 10 points and more points means it’s discretionary. Enhanced rate for mobility is NOT an automatic qualification for a BB.

The gov website says otherwise

I actually get ADP in Scotland and the points required are slightly different which means if I was in England I would get a BB. Fighting with the council about it currently but they are as rigid as it gets so I'm not making much progress.