DLA – My Experience Claiming for a Child with Autism.

Its highly topical at the moment. The welfare system is being reformed, and by reformed I mean its being made harder for legitimate claimants to claim for benefits. There’s a misconception that all you need to put your hand out, and you are quids in! I’m fairly sure that anyone with that view obviously hasn’t had to claim for anything at all.

My tale begins with our son being diagnosed with an Autistic Spectrum Disorder. The thought on claiming for anything hadn’t even occurred to us. It was hard enough to take in the fact that we’d been landed with this bombshell. Fortunately for us our Health Visitor – kept in the loop thanks to details of Matthew’s case being passed onto his GP – was on the ball. She came round to see Matthew and asked if we were claiming Disability Living Allowance. As I say, the idea hadn’t even occurred. Going off on a tangent, how many other parents suddenly becoming the parent of a child with a very special need don’t even think on claiming for something to which they would most likely be entitled to?

Our Health Visitor gave us great advice on the sort of things to included in the claim. Lots of the advice related to things we hadn’t had the chance to think about. Simple things like taking a bus. How would Matthew cope if, for example, a bus that wasn’t ours went past the stop without stopping? It would almost certainly result in a tantrum. The National Autistic Society website was a fantastic resource. I’d gathered all the advice I needed, requested a claim form from the DWP. Now it was time to make a claim!

To make sure I got everything down, I decided to draft each section in word so I could put in all my additional comments as supplementary sheets. The advice of the NAS was to be as detailed as possible. If anyone is in a similar position, don’t tell them about what an “average” day is like with your autistic child. Think about what its like when it’s as bad as it can get. Don’t say he/she can manage round a supermarket. Tell them you have to consider leaving your child at home because you can’t bear the stress that going down the frozen aisle, your little one may go into meltdown and lay screaming and kicking on the floor while you have to stand and endure the stares of other shoppers. Think of what its like when your child wakes in the night in terror, waking up the entire house at 3am with their screaming. Think of what its like to take almost an hour to get them dressed each and every day. Just think of how drained and exhausted you are every day trying to cope with an autistic child. Just remember, parents of “normal” children don’t have these problems.

If anyone making a claim for their disabled child think it’s just a case of saying “He’s autistic, can I have DLA now?” drop that idea at the outset. It’s a draining and time-consuming process. We all need to focus on the positives for our child. Yes, they are autistic, but what can they do? What do they achieve? None of that when claiming DLA. The constant focus is on the negative. Page after page is all about what your child can’t do. They can’t dress themselves, they need constant supervision in the bathroom, they need help eating.

The detail needed, whilst perhaps in someway understandable, but seriously, asking how many minutes it takes to wash, how long they are disturbed for at night. It goes on and on. You just have to compartmentalise your child’s life and think clearly what a difference having an autistic child makes to your life. As I say, and autistic child isn’t a “normal” child. It’s surprising how much extra time you take with everyday activities. Try cooking a meal whilst trying to supervise an autistic four-year old who’s a danger to himself and see how long it takes.

Ultimately in took about a week to make sure I’d got it right, and had it detailed sufficiently. The submission from me alone ran to 10,000 words. That wasn’t the end of it though. After the claim had been submitted, the DWP needed a school report. We decided to speak to the nursery teacher, as we’d had no report of them struggling with Matthew. I didn’t see the point of the school report considering he was at home 21.5 hours out of every day. The problems were all ours. Astonishingly his teacher asked what we wanted to the money for! Honestly, I think that’s our business. But then again, most don’t realise DLA is to enable claimants to live as independently as possible. It has allowed us to make sure Matthew’s mum can stay at home and give Matthew the care and supervision he so badly needs. To many, it’s a god-send.

Ultimately we got a call from the DWP to say we’d been awarded higher rate care component. The only disappointment was that the claim period was for 1 year. A call to the DWP to try to ascertain if this was normal for a child yielded nothing. The NAS did think that it might be that they couldn’t assess a mobility component until Matthew was five. In July last year we were advised to submit yet another claim to the DWP. Incredibly we had to do it all over again within a year of the original claim. Fortunately nothing had changed for Matthew. If anything were we discovering more things he couldn’t do. We took the Health Visitor’s advice on the mobility side. Getting Matthew from A to B regularly involves going via C, D and E! Despite the claim not being officially due for review until September, the DWP called in August to say Matthew was getting higher rate care and lower rate mobility until October 2013.

Things have changed since then and his review will be dreaded and will be highly stressful. But, somehow we negotiated a claim process designed to deter claimants, and had come out the other side with the chance of giving Matthew the help he so badly needs.


15 thoughts on “DLA – My Experience Claiming for a Child with Autism.

  1. hi i find your blog really interesting as i too have a son recently diagnosed with autism spectrum disorder, it has been hard accepting the news especially as he is our only boy out of four kids, it took us two months to accept it and sit ourselves down and decided that one of us has to quit our job and focus on the kids especially as he is not the only one we have to consider, hence the need for extra financial help in the form of the DLA, it has already taken me a month to answer the form and im nowhere near finishing it as I am truly finding it hard to put into words the stress that comes with having a son with special needs, hopefully i will be able to send it off this month.

    • You have my sympathy. Its a massive drain having to complete that horrible form. Our first claim ran to more than 10,000 words, and it all has to focus on what they can’t do. In my view, the claim form is meant to deter claimants. But, just put down how bad it can be. DLA is meaning the boys’ mum can stay at home for them, and its been vital for that. Its hard to get across how difficult things can be, as everyone in the house is affected, not just the child. If you get it (cross fingers) remember to claim for Carter’s Allowance too, and if you’re in receipt of Child Tax Credits, remember to tell them if you get at least middle rate care, as it makes a difference there, although you also need to tell them about the Carers Allowance too, as that’s a taxable benefit.

      Good luck!


    • Designed to put off claimants, I’m certain. We’d not even considered it until our Health Visitor suggested it. Jane & I have both paid taxes and NI for years without claiming a penny, so why not when the boys are entitled?

  2. Debz says:

    I have registered at my local careers centre and they have special advisors there who can help fill in the child’s DLA claim form with you… It’s all about using the right terminology and wording and they repeat the same questions in a different across the form to trip you up… 40 odd pages long… Took 3 hour apt to help fill it in from the documentation I had kept from apt sect and SEN from school and the occupational therapist. Check to see if there is a local carers centre near to you

  3. Hi, I found your blog post really interesting. We receive higher rate DLA for my son James who turns five tomorrow. We’ve been invited to apply for the mobility component and I fully expect him to be eligible for the lower rate but I’m frightened to apply in case they reduce his care element (like your wife I am able to stay at home due to the financial help dla affords). Just wondered, was this something that concerned you, and did they reassess your sons claim?

    I don’t believe that the level of care James requires has changed since we made the claim, if anything he has got worse. The only difference is he is now potty trained but that actually involves more supervision and assistance than nappy changing since he regularly wets himself if not reminded and needs support to actually use the loo.

    • Yes indeed I was worried the care element would be changed for the worst. What I did was more-or-less re-submit the original, highlighting where he’d deteriorated.

      We also had his claim reviewed last year – because he has mobility element – but thankfully no change was made. I hope it goes well, but look out for a shortish award period. Our youngest is also ASD, but as he doesn’t get mobility, he was awarded care element until he’s 16 (he’s 7) but eldest had claim at 5, review at 8 with another due at 13.


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