DLA for Autism

I know there are people out there who are convinced parents of children with SEND (special educational needs and disability) get everything ‘handed to them on a plate’ so I’m a little weary of writing about my efforts to get DLA (disability living allowance) for Tyger.  In reality, I rarely get anything handed to me on a plate and even when I do I don’t have a chance to eat what’s on it whilst it’s still hot (what do you mean, I’m taking the metaphor literally??).

There are still many people who ‘don’t believe’ in autism as if autistic people are witches or vampires.

We tried to pull off his mask but he's just a little boy...
We tried to pull off his mask but it’s just a kid…

Other people simply think ASD is ‘over-diagnosed’ because, of course, Jane Bloggs the accountant who likes to rant online about the nasty child in little Timmy’s class at school or John Smith who works in Asda and makes derogatory comments about parents not disciplining their children absolutely understand neurology and psychology better than the professionals who have spent years studying autism.

The above views make me reluctant to talk about getting money due to Tyger’s ASD.  In fact, when I first found out about DLA and the fact Tyger might be entitled to it, I dismissed it because I felt undeserving.

But I thought about all the costs we have due to his autism:

  • The specific foods we need to have in at all times (you don’t want to know about the meltdown caused by running out of Babybels).
  • The certain clothes (trousers must be jogging bottoms but thick because he gets holes in the knees, t-shirts must be on the big side so the neck hole doesn’t get stuck on his head, jumpers must be zip-up hoodies etc.).
  • The light shows (and endless supply of batteries they require) he needs to fall asleep.
  • The various sensory toys we’ve bought in the hope they might help him when he’s becoming overloaded.
  • A subscription to Netflix so he can watch the latest show with which he’s obsessed.
  • Books to help him understand and deal with certain events (Christmas, moving house…).
  • Replacements of things broken during meltdowns.

Often low cost things, some items we may or may not have purchased regardless of his ASD but still it all adds up.  Since it’s notoriously difficult to apply for DLA anyway, I thought I’d just see if Tyger was awarded anything.  If anyone should decide whether we’re entitled to any money it should perhaps be the people employed to decide if we’re entitled to it!

The form itself is 42 pages with 72 questions/sections to fill in.  It’s pretty hard going, not least because if you have to fill it out for your child there’s a good chance you already struggle to find time to do day to day tasks as it is.

Another aspect a lot of parents struggle with is the fact you have to spend so much time and energy thinking about every single way your child struggles, is different to their peers and is hard work to care for.  It’s not uncommon for parents/carers to feel guilty or even like they’re betraying their child whilst filling in the form.

Whether it’s because I routinely write about Tyger’s autism or just that I’m hardhearted pragmatic, I don’t know, but I didn’t find it too bad having to write so much about Tyger’s ‘shortcomings’.  However, it’s a common enough problem for parents that I’ve seen it mentioned several times online and know at least one mum who has felt this way.

It was difficult for me, though, for other reasons.  I struggle with forms.  I used to do data entry where I basically spent hours at a time looking at forms other people filled in and correcting the information added so I know even seemingly ‘easy’ sections like writing your own name can cause many people problems (you wouldn’t believe the number of people who don’t know how to spell their middle name, for one thing, even when they send a copy of their birth certificate clearly showing their middle name along with the form).

My own autism means I struggle with questions that are in any way ambiguous, find it next to impossible to fill out the form little and often instead of in big chunks (including leaving most of it until the last minute) and I get bogged down by how long my answers should be and whether they’re too short and lacking in detail or too long and irrelevant.

It's like being back at school for exams...except with screaming children constantly asking for drinks.
It’s like being back at school for exams…except with screaming children constantly asking for drinks.

Before this post gets too depressing I should point out there is help out there.  If anyone reading this ever has need to claim DLA I highly recommend you download the Cerebra DLA guide available here.  People on forums (whether a forum specifically about ASD or a forum with a SEN section) are also extremely helpful in my experience.

It is a slog to get through, though, and as well as the form the DWP require copies of reports/diagnoses to assess the claim.

As it happens, the claim I made for Tyger was successful.  He is getting mid rate for the care element of DLA.

However, I can assure you using my son to make money was the furthest thing from my mind when I sought a diagnosis for him (not that a diagnosis is always necessary for DLA) and the same can be said for everyone I know online or in real life who claims DLA.

 

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4 Comments


  1. Glad to hear Tyger’s claim was successful!

    I’m sure the DLA claim will come in handy in ways other than just the money. As I’ve been finding out DLA/PIP claims seem to be the only “officially recognised” way to prove you’re disabled in the UK, especially when it comes to most organisations who may offer discounts or other forms of help.

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  2. Every little bit helps. In the US (in the state of California), my son’s ASD diagnosis qualified him to receive insurance through the state on a “disability waiver.” I feel for you in filling out the forms and also in claiming benefits. Liam doesn’t do well with “invasive” procedures, like ear scopes or dental cleanings, so we kept the State insurance so that we could take him to the local Children’s Hospital (which is covered), in case he needed anything more than a visual dental exam. In order to keep the insurance, however, we needed a billable service from the state. We’d discontinued ABA, and were offered a few hours of respite care a month. My husband and I felt very odd on our first night out with the sitter provided by the respite care organization, knowing that we were at a restaurant so that our son could keep his medical insurance.

    We even put off using it for a long time, because we didn’t want to take away from other needy families, but were told we had to use it or lose the insurance. When food, travel, learning, language and worry about preparing our kids for the future (without us at some point) is a daily challenge, assistance of any kind is appreciated!

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  3. Thanks for the link. We claim DLA for our son but it’s always OH who fills them in because it’s information overload for me. I always make a copy of them before they’re sent so I can refer to them if I have to fill them in myself next time. I don’t feel at all bad about claiming the money. Raising any child is expensive but an autistic one more so for the reasons you’ve stated. For example, the cheapest weighted cushion I could find was £34. That’s for one aid! His electronics are not simply for play – they distract him from the stimulus that overwhelms him and sends him into meltdown. Everything we buy for him is to make his life a little easier and it costs money that we wouldn’t normally have or we would have to save up for. He isn’t able to go out and play like most children his age. He hasn’t been to a party. He is unable to enjoy the things that most children take for granted. That’s what a lot of people don’t realise..#SpectrumSunday

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  4. I’m pleased the claim was successful. I found it really hard filling in that form too, I felt awful writing so many negative points about my little boy when all I want to do is concentrate on the positives. The money definitely comes in handy for the long list of things we always need to buy or replace. Have you applied for carers allowance too lovely? Thank you for linking up to #spectrumsunday lovely. Hope you join me again this week xx

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