ASD and DLA

[MadmamMi]

Hi all,

New on mumsnet! Just looking to see if anyone has been in the same boat.

I submitted an application for DLA for my 10 year old DS who has had an ASD diagnosis. In addition to the extra information sheets, I filled about 8 sides of A4 in about him: meltdowns, needing certain cutlery, needing about 100 prompts to get dressed, in and out bath, certain clothes and all about social difficulties. Despite that, I’d say he’s very high functioning, academically very strong but needs a lot of support with normal tasks and social/emotional aspects of life.

Has anyone got a child like this and still be approved for DLA? Everyone I know it’s for ADHD rather than ASD so didn’t have any friends to ask.

TIA

Hi

My 10 year old and 12 year olds are similar in how their asd affects their/our daily lives.

We were just awarded DLA for both - not had the letters yet but had the payment - assuming it's the postal strikes.

It's not about academically abilities. It's really about how you have to make changes to manage their disability. Sounds like you do.

For example, avoiding crowded areas, busy roads (sensory overload for us) so changing routes, getting to a place of safety for meltdowns etc, support/reminders for personal hygiene, finding clothes that don't cause sensory issues, food that works for them health-wise and sensory-wise etc.

I found it helpful to talk about it with a friend when applying because I think, as parents, we often don't even notice the changes that we make sometimes because we have been doing it for so long. And we are good at anticipating issues arising in certain situations. It's helpful to think, if I didn't do X (provide ear defenders, search for clothes they can wear, not have the 'right' clothes washed and dried ready for the next day, grab her hand so she can walk past someone, see a meltdown building and find a safe place, etc) what would be the result?

Did you look at Cerebra? That is helpful for filling in the forms (I can see you've already don't the forms but might be helpful anyway).

I hope you get what you need. I've done 2 for mine recently and both awarded something. I also know a number of people with kids with asd who have DLA.

Thanks for your reply!

I used cerebra, so helpful! That’s why I had such a massive write up. You are right. When you have HF ASD, you forget all the time you lose checking they brushed their teeth, re washing hair, going through a ten hour session of trying to get them dressed!

Can I ask when you applied please? And what rate you got but please don’t feel you have to answer as I know it’s a personal thing!

Hi

I applied late September and got the money in last week. Still not sure on level of DLA because of the lack of letter and backdating etc.

It's not the lowest though.

Fingers crossed for you.

Ah fantastic! They received mine Oct 12th so hopefully shouldn’t be too long! They seem to be catching up a bit.

Hi my scan date was 21st September. Meant to be going to the DM this week. And fingers crossed an outcome too this week. My son is on the SCAMP pathway and awaiting the ADOS test now. I’ve sent his ECHP to the DLA hoping that’s enough. I’m learning new terms & whats actually part of his routine daily. I fear I’ve missed out some parts of his care and needs because they have become so ‘normal’ in our daily routine. But I can’t work as some days he won’t go to school, others we are late because he can’t regulate properly or I get called into the school. He’s 7 so I’m hoping for MRC and LRM or MRM for him. So fingers crossed 🤞🏼

Just read this and wondered if I could get your thoughts. My son has just been awarded DLA and we got a back payment, which is amazing.

Now trying to work out what it's considered ok to spend the DLA on as I'm autistic (son has ASD too) and it's giving me anxiety! I don't want to get it wrong!

He's what they used to call high-functioning and most people don't even realise he is autistic. I'm thinking about a weighted blanket and maybe finally getting him tested for dyslexia (never been able to afford it up until now as it's so expensive).

When I start getting the monthly payments, what do people pay for with it? He likes quite specific food and likes to wear certain socks (bamboo ones so they're not cheap and he constantly loses them). Are those kind of things ok?

We've been claiming DLA for my DS(9) since he was 5. Our claim was mostly based around poor motor skills - so requiring assistance with meals, dressing, personal care toilet etc. Also (at the time) speech and language issues - which have since improved and meltdowns, impulse control, safety etc. We got the mid-band of funding for personal care and the lower band of funding for mobility. We renewed recently and it was kept at the same level.

DLA has been a game-changer for us. We've bought a load of sensory equipment - therapy ball, weighted blanket, trampoline etc. And it's paid for about 4 years of private eSALT or Occupational Therapy because our local NHS offering was dismal. We could never have provided that ourselves and it's helped hugely.

Hey, sorry to jump on (first post and have no idea how to work Mumsnet)
My daughter is on waiting lists for ADHD and autism, I applied for DLA back when she was 10, got accepted a few months later after she turned 11. When I filled out the form I explain that although yes she can walk fine, she doesn't cross roads safely due to not looking etc. If she is to have a meltdown she will just turn around and walk off. She was awarded low rate mobility.
Now she has gone into secondary school she's wanting a bit more freedom and has asked to walk to school with a trusted friend. She doesn't have to cross main roads and it is a familiar route for her about 5 minutes walk time. Is this something I need to report as a change of circumstances? I've read that the criteria is 'cant walk safely on Unfamiliar routes' which she can't, but is still making her way to school on a familiar route. She doesn't do it on her own ever, and sometimes I will still walk her if she's having a particularly bad day, but she is wanted to walk with a friend now. I don't want to get in trouble!!

Hi, I have been refused dla for my daughter with autism, am going to ask for someone to look again at it. Any tips would be appreciated thanks