Autism – Hidden Disability and DLA

Since the current government came to power, there’s been a relentless onslaught facing the disabled. To most, the word “disabled” is just for those with obvious physical limitations. But that’s just part of the full story. Many people have hidden disabilities, including of course, Autistic Spectrum Disorders. They would take one look at anyone with autism and ask, “what’s wrong with them then? They’re faking it” It might be hidden, but it’s real and affects lives in ways people can’t understand.

In 2010, Matthew was diagnosed with an Autism Spectrum Disorder. We went through the tortuous process of claiming DLA for him (
https://theworldofneil.wordpress.com/2013/02/25/claiming-dla-for-a-child-with-autism/) – the process is long and difficult (what can’t your child do?) but with the help of our Health Visitor and the brilliant resources on the National Autistic Society website (http://www.autism.org.uk/living-with-autism/benefits-and-community-care/disability-living-allowance/dla-tips-for-parents-and-carers.aspx) we got through the process, and had DLA awarded for Matthew.

However, despite it being a lifelong condition, Matthew was only awarded DLA up to his 8th birthday, which means his claim is up for review this year, and I’m dreading it. I know Matthew hasn’t changed for the better – if anything, he has gotten worse. His verbal and physical aggression is escalating, and he’s getting into trouble at school for the first time because of it. He has physically attacked other children at school (resulting in him being moved to another class) and he has greater difficulty observing personal space, understanding friendships and negotiating the playground. He also has difficulty focussing on eating unless he’s directly supervised so he will eat. Its gotten to a stage (again) where on days when he doesn’t have a supervised lunchtime activity (that’s 3 days a week) we’re having to take him home at lunchtimes to a) ensure he eats (on most days, most of his lunch would come home uneaten) and b) he’s not exposed to the chaos of the playground at lunchtime. He’s so vulnerable and his view of friendship is dangerous. If names are exchanged, he is friends with someone. He doesn’t realise how dangerous that can be. Would he go off with older boys/girls if he exchanged names? I think he might – with potentially disastrous consequences.

Then there’s Matthew at home. As I said, he is much more aggressive both verbally and physically. He can be quite abusive to Daniel in particular, but won’t stop there. He is much more prone to physical violence that before, and has taken to hitting Daniel outside of the house (yesterday he hit Daniel so hard in the chest in the school playground, that Jane thought Daniel might be sick) – and that wont just be with his fists and feet. Anything at hand can be used to belt (usually) Daniel. Mealtimes can be hazardous in that respect. Quite a number of times he has thrust a knife in Jane’s face. He can be a real danger both to himself, and to those around him.

Basically, Matthew still needs direct supervision on a constant basis. Its impossible to leave him in a room with Daniel, as you know within minutes (seconds quite often) he will be at Daniel verbally and physically. As Daniel gets bigger, it will involve retaliation, and there’s more and more chance that one or both of them will be seriously hurt. Night time isn’t showing any signs of improving either. Matthew’s night terrors are still with him, and although he will settle down reasonably well (having said that, he still needs one of us to be with him until he drops off to sleep) he can be back out of bed anytime from 10pm – 5am. That’s usually accompanied by screaming that comes with night terrors. Jane & I need to get him out of bed before he wakes Daniel, but its our sleep being disrupted (I doubt we’ve have more than a handful of full night’s sleep in the last 5 years.) Matthew can take up to an hour to calm down to the point where he’s ready to go back to sleep. Then there’s the fight to get him to go to the toilet in the night. He won’t go unless he’s made to – we need to take him and make sure he goes. Any parents of a neuro-typical seven year old need to do that?

All of these behaviours are hidden to most people, but we are having to deal with them almost daily. Matthew is also increasingly unpredictable, and that makes his behaviour all the harder to deal with. Its not a case of know when are the hotspots during the day are so you can prepare for them, or know when you can let your guard down. Its all of the time you need to be prepared, whatever time of the day it is. That’s when I think about his DLA review, and all the things we have to do, all the coping strategies we need, all the extra supervision he needs to get him through each day. Mental health issues are hidden disabilities that can affect the lives of the people who suffer from them, but they also affect the lives of those around them. I’m dreading the review, but we won’t be keeping Matthew’s disability hidden. But who can tell if the DWP will see it that way?

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2 thoughts on “Autism – Hidden Disability and DLA

  1. Thank you for sharing this. I am about to start the DLA process and am dreading it. All the forms have put me off in the past. This government have a lot to answer for making it more difficult for genuine people to get the help and support needed to ensure our kids are safe and able to live life to the full.

    • Good luck with it all, I hope it goes well. Just remember to put down what its like when its as bad as it can be. Feel free to get in touch if you need any advice! Its neilr68@sky.com – but the NAS website (www.autism.org.uk) is a great resource.

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