Saturday 18 May 2013

An angry one - ASD and ADHD are real, deal with it

Crudely speaking Nathan is a classic example of the nice and acceptable face of disability. A cute little kid in a walking frame who smiles a lot. It is easy to feel sympathy for a child with a physical disabilities who just needs a little more time and help. Funnily enough no one ever stares at me with this 'Jeez, you are a rubbish parent, all your kid needs is a bit of discipline, mine would never have gotten away with this' look that is the daily diet of many of my friends whose children have less visible disabilities, like ASD and ADHD (or both at the same time!). Not only do these parents generally end up exhausted, looking after children who do not sleep when other children sleep or who are not able to entertain themselves for 5 minutes or who cannot be left to their own devices for a second for safety reasons. They also face a harder battle to get the support their children need (cerebral palsy is just that much easier to understand and measure). And on top of that they cope with a society ready to believe that children with behavioural difficulties are 'just naughty'. Their parenting is always under scrutiny from Joe Public who knows all about autism because he's seen Rainman and who doesn't believe in ADHD as 'these kids just need some discipline'.

One of my friends has just pulled the plug on her facebook account because she got what was effectively hate mail on her wall from people who had read a website suggesting that the man who defined ADHD (Attention Deficit Hyperactivity Disorder) had said on his death bed that it was all lies. He didn't say that. He expressed his concern that more children than necessary are medicated. That's a different game altogether. Snopes explains it here. I've read the original article in German. It doesn't say he thinks ADHD is fake. What makes people think they can hound a parent of a child with Special Needs with 'proof' that the child's special needs are fake in the first place? No one would tell me that Nathan doesn't really have cerebral palsy and that he could walk if we just refused to put him in his walking frame. It would make no sense. In the same way it makes no sense to tell a parent whose child has no 'off-switch', who is oversensitive to every external stimulus going, whose world ends if the recipe of their favourite baked beans changes slightly, who never seems to sleep, who cannot concentrate at school, and who does not know how to communicate with peers, who will only watch one and the same video over and over again or who screams very loudly trying to drown out the stress that their child does not have a real disability just because you've read something somewhere.

Let's play it straight. Nathan gets DLA. He gets Mobility at the higher rate, as he can't walk. He gets Care at the middle rate because he goes to bed at 8 and stays there until 7. So we get down time, and sleep. Some of my friends' children get Care at the higher rate because they struggle to go to sleep, wake up a lot and happily start the day at 2am. Now you choose, the extra money or the sleep? Yes, I thought so. I wouldn't swap either. Nothing gets you down like never having a good night sleep or a decent break. It wears down your sanity.

ASD (autism) and ADHD are real. Very real. Tough for the kids and tough for the parents and for siblings. Believe it. Accept it. Don't let government rethoric and media frenzy tell you what to think. Use your common sense and understand that other parents also love their children and also know how to use appropriate discipline. That they do not need your parenting advice and judgementalism. If you do not know anything about the difference between meltdowns and ordinary temper tantrums it's easy to find out more. Like here. Children with conditions like ASD and ADHD need your support and so do their parents. There will be at least one child in your circle of friends and acquaintances with a problem like this. Your understanding of what it is like will mean a lot.

PS: Rainman. Famous film featuring Dustin Hoffman as a man with autism who is also madly clever with cards. My first encounter with autism. Responsible for commonly held belief that every person with autism is also outrageously genius at something. This is not true. Only a small percentage has a gift like that.

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