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.
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.
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.