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?

Depends on the council. Mine says this:
-Receive 8 points or more under the 'moving around' descriptor for the mobility component of Personal Independence Payment (PIP) because you can’t walk more than 50 metres. (The badge will be issued to the expiry date of your award if it is less than three years, alternatively you can apply through the discretionary criteria). or
-Receive descriptor E of the 'planning and following a journey activity of the mobility component of Personal Independence Payment (PIP), which states "you cannot undertake any journey because it would cause overwhelming psychological distress".

www.redcar-cleveland.gov.uk/roads-and-parking/blue-badge-scheme

You will be eligible for a badge if you:
• Receive the Higher Rate of the Mobility Component of the Disability Living Allowance; or
• Receive 8 points or more under the ‘Moving Around’ activity of the Mobility Component of Personal Independence Payment; or
• Receive the mobility component of PIP and have obtained 10 points specifically for Descriptor E under the “planning and following journeys” activity, on the grounds that you are unable to undertake any journey because it would cause you overwhelming psychological distress ; or
• Are registered blind (severely sight impaired); or
• Receive a War Pensioner's Mobility Supplement or
• Have been both awarded a lump sum benefit at tariffs 1-8 of the Armed Forces Compensation Scheme and certified as having a permanent and substantial disability which causes inability to walk or very considerable difficulty in walking.

You may be eligible for a badge if you:
• Drive a vehicle regularly, have a severe disability in both arms and you are unable to operate, or have considerable difficulty in operating, all or some types of parking meter; or
• Have been certified by an expert assessor as having an enduring and substantial disability which causes you, during the course of a journey, to:
◦ Be unable to walk;
◦ Experience very considerable difficulty whilst walking, which may include very considerable psychological distress; or
◦ Be at risk of serious harm when walking; or pose, when walking, a risk of serious harm to any other person.

So either you have 8 points mobility under pip or you have to be assessed by an expert assessor.

And it's only may be. Not will be.

@Onnabugeisha

That's the gov rule, then the council can act with discretion but they can't refuse a badge if you qualify as per the gov rules.

@gliiterryballs it depends what the points are for. If (like many autistics) you can walk but have challenges in the “Planning and following journeys.” Section then you need to score 10 points not 12. As ds can’t follow a familiar route unaided he scores the extra two points and so loses automatic BB and it becomes discretionary.

Yes that's what I am saying. There is an automatic entitlement to a BB which is point dependent, not award dependent. A lot of people assume high rate mobility means a BB but it doesn't.

This is what I said?

I'm sorry I have completely misread you.

I'm sorry I had no idea. Quite bizarrely you need 12 points In Scotland to automatically get a BB under planning and following. I get 10

🤣I’ve read everything back and am completely confused!!!

all round

Kettles on

The reason you qualify at 10 points and not 12 is because supposedly at 12 points you always have someone with you so can be dropped off (like a parcel - parked somewhere while the person parks) or don’t need to park near as your support worker can help you follow a route. Obviously a rule made by someone with zero experience of severe disability of any sort.

What of you use a wheelchair sometimes for things like hypermobilith or as an zid to help with sensory needs?

I'm absolutely appalled at this.

Please excuse my typing, I'm juggling about 4 different things atm.

I think the reasoning for the 12 points not being automatic BB is that there may be some people who always need someone with them but don't need to park close to where they are going.

I can’t describe how upsetting it all was.

It’s just bonkers and must cost so much to administer the gatekeeping. I need to get a letter from a professional to reapply (what a waste of their time).

Then surely you'd qualify because of your walking ability?

@Sindonym the letter has to be from your consultant really not the GP.

They wouldn't qualify on the walking as can walk, run, jump etc they would be able to walk the required distance. They qualify on fla under severe mental impairment. The wheelchair is for hypermobility that can cause fatigue (longer distances) or sensory needs in busy/ crowded places (gives them their own space and close their eyes/ where ear defenders etc to shut themselves off from stimuli while still moving.

The LD team did it last time which was accepted without any problem. I'll ask my son's care coordinator and she can decide who is best to provide the evidence.

That’s a good idea @Sindonym I think they’re just silly really. They hope you’ll give up and go away. To be honest I probably would have but the casual suggestion that I just always be available to take ds from A to B as a solution plus a ridiculous response to me pointing out I was no longer able to keep him safe if he wanted to run (As he is now much bigger than me, so picking him up isn’t an option) They responded that there was no evidence that it was harder to look after a young man than a child………gave us something to laugh about with the consultant I suppose. College were fairly non-pluses too, they don’t take him out.

Yeah the ‘solutions’ are always dreamed up by someone who has clearly never been near a disabled person before. I was told I could leave ds1 at the front door while I parked 😂

I was told I could leave ds1 at the front door while I parked

Well that would be unbelievably dangerous interesting.

That’s the logic behind the lack of instant qualification for 12 points. I did laugh a lot.