Financial Support for Autistic Adults?

baxter1999

My son was diagnosed with Autistic Spectrum Disorder aged 7 and received DLA until age 16 when he had to apply for PIP. Despite having the same problems communication, socialisation issues, needs regular prompts and support etc his claim was turned down and he now receives no financial help.

Treadmill

I receive the standard rate of Daily Living and No mobility for ASD, I also have anxiety and depression though which was probably caused by remaining undiagnosed for 42 years which made living day to day much harder.

PIP is awarded on how a condition affects you, and not the condition itself so whether you will be awarded PIP will vary from One Autistic person to another.

Autism is not just being a 'bit odd' it's a lifelong developmental condition that has a very real impact on education, life , and work and in my opinion anybody who feels that they are entitled to an award of PIP should claim.

Danni

My husband receives enhanced daily living PIP for autism spectrum disorder, and just that. Technically should be entitled to standard mobility but we're not going to argue as we're just glad he got something without a fight. He was diagnosed as an adult (had speech therapy for speech delay as a child but when he started talking he was just considered odd).

He needs a lot of help with stuff, most of which weren't obvious in childhood while he lived with his parents. Remembering to eat, knowing how to dress appropriately, communicating with strangers and officals by phone or in person (phone is worse), personal hygiene, managing money, travelling anywhere new, coping with changes, lots of other similar stuff. He went to university for a year and nearly failed (though academically capable) and was severely underweight.

I helped him with his difficulties as much as I could (though I'm also autistic so have some of the same problems, and we relied a lot on help from my college lecturer), then I got a(nother more) severe chronic illness and just couldn't anymore.

It took a lot of fighting (and him ending up in hospital due to becoming my carer on top of his own difficulties) to get any help, but one thing in our favour is I could already speak DWP from doing my benefits and taught him before I got too ill. His difficulties also line up almost exactly with many of the PIP criteria, which meant though initially he was going to claim DLA we waited for PIP as it was only going to be a few months (though due to his difficulties it was several months after that before he was able to start the claim). He probably would have got middle care DLA as he doesn't need night time care (just repeated reminders that bed is a good idea) so he's one of the few that actually are better off on PIP.

We're aware that we're really lucky now. He got a decent assessor for his PIP assessment who actually took notice of what he was saying (and understood why he had his iPad in case he couldn't communicate verbally, though he ended up not needing it at the time). It did take 13 months to get it though.

He's technically eligible for ESA as he wouldn't be able to work at the moment, but as he's my main carer (I get two care visits a day but he does the rest) he's on my claim and gets carers allowance instead. He also now attends an autism day service three times a week which helps him a lot. Took several years to get him that help, and we're lucky it's available here.

He's fine with romantic relationships though so long as he doesn't have to do the asking out :-) Most of his friendships are based around similar interests in areas that tend to have a higher proportion of neurodivergent people, and frequently start online. The internet has been amazing for that (we originally met online).

I'd probably be eligible based solely on my autism (and related anxiety) but my physical health is so poor (mostly bedbound, though I can sometimes go out after being hoisted into my wheelchair) that's the main reason for my benefits. One of the very few benefits to being so ill is it makes getting benefits easier (I've not needed a WCA or an in person assessment in years, though I'll be changing from DLA to PIP later this year so we'll see) but I'd much rather be healthy.

Sorry for the massive ramble, I'm not very good at being brief. Just wanted to give an example of why someone might get PIP for autism even though they're able to have a relationship.

Treadmill

Very interesting to read what you have to say Danni. The things you listed that your Husband got points for are exactly what I got points for. My PIP is on the process of being renewed, I got 11 points for daily living last time but most likely will get more this time as some things affect me worse as I get older

Prinzessilein

I was diagnosed with Autism when in my 40s. (Currently get ESA Support and DLA Lower Care and Mobility - should be medium rate Care now, but claiming this would mean changing to PIP and I really don't need that worry about whether they will allow it or completely reject the application, it will happen sooner or later anyway and I don't want to rock the boat!...It is really sad that people feel so scared of the system that they would rather not claim what they are entitle to, because they believe the system is so flawed they will lose the little they already get!)

I am another 'counter'...and a 'word-maker' too!....when I have my yearly eye-check and have to read from the chart on the wall (is that the Snelling test?)...I have real difficulties because I WANT the letters to make words!....So, I'm like: "Okay first letter on row 3 is an 'S'...then there is an 'H'....next letter is ummmm looks like an 'F' but can't be, it should be a vowel next....maybe it is an 'E'...okay, 'STE....'...then that looks like an 'X; to me but 'STEX'?..."..at which point I can see Mum (my carer) trying to decide whether to laugh, bang her head against the wall or explain things to a rather confused optician!

GlasweJen

You can get Snellon charts with just one letter on each line or with "open circles" or "tumbling E" where you just say what position the letter is in "up, down, left or right". I find those easier but have loads of eye charts memorised so it's hard to measure vision as I'm not sure if I am seeing it or if I just know it.

gunsandbanjos

kingfisherblue wrote: »

I've always made words out of car number plates, and so have my children. The youngest is being assessed for Asperger's.

My daughter and I make words out of car plates, it's just a thing people do.

Terrysdelight

baxter1999 wrote: »

My son was diagnosed with Autistic Spectrum Disorder aged 7 and received DLA until age 16 when he had to apply for PIP. Despite having the same problems communication, socialisation issues, needs regular prompts and support etc his claim was turned down and he now receives no financial help.

My son was diagnossed at 6 and I claimed DLA for him from about age 7. The money was a great help because one of his main issues is hypersensitivity to virtually everything. My son is 16 now and he still can't touch paper without it hurting him. He can tolerate certain clothes/materials. He couldn't wear shoes or clothes for a period of 18 months. All he could wear was a loose tshirt and loose shorts and he would mostly walk in bare feet.

With the help of anxiety meds, he can cope quite a bit better, but there is so much that he can't tolerate and he has emotional meltdowns. His DLA ran out several months back and although in my opinion he would be entitled to the lower rate of PIP, there was no way on this earth that I would put him through the 'ordeal' you have to go through to achieve a successful claim.

My son suffers badly from anxiety and what with studying for his GCSE's I think it is bad that the PIP transfer couldn't wait till after exams are over.

I had to give up working to care for my son - I had a good job with a decent income. I was fortunate to do well on an investment and that money will pay for any additional help my son will need.

I feel terribly sorry for those people who 'need' the money for their children but are put off of claiming. It is so sad when there are so many genuine cases out there.

Treadmill

I have just been awarded PIP standard rate for daily living again. I got 11 points for Daily Living and 4 points for mobility.

I'm deciding whether to go for mandatory consideration because I didn't get any points for needing prompting to take nutrition, needs prompting to understand complex written information, and only 2 points for needs prompting rather than supervision which is 4 points.

I've asked for the assessor so report and will see what it has to say before deciding whether to continue.

kingfisherblue

Treadmill, you write in sentences that the DWP would consider complex. The example they give is something like "I'll have a cup of tea, please, with no sugar and just a splash of milk". I've read it on a link somewhere on MSE. I don't think you will score more points for that.

You might, of course, gain more points for the other things you say, but you should be aware that your award might be reduced. Do you have evidence that you should receive the additional points?