I’ve blogged before about the diagnosis process we went through with Matthew before he was diagnosed with an ASD in early 2010. An 18 month journey to that point from when we first raised our concerns with our GP had been a long one, and just like that we had become autism parents. Its a bit like being an “ordinary” parent but with extras. You know you’re an autism parent when your child wakes up at 2am every night and screams the house down. If you get them back to bed within an hour, you’ve had a good night. That soon takes its toll on its own, and you feel like a zombie in no time at all.
There’s more though. You learn to cope with the meltdowns that can come on in the blink of an eye. All you can do is try to keep your child safe. That’s fine when you’re in the house. But all us autism parents will know what its like when our little ASD child melts down in public. You don’t need to look. You can feel the disapproving stares from passers by. You’re just a bad parent who can’t control a misbehaving child. I bet we’ve all had that one. Fortunately the stares are all we’ve had. At least no one has tried to give us “advice” That’s part of becoming an autism parent. Having a thick skin is optional, but it does come in useful. Like when you sit in a multi-agency meeting during the diagnosis process listening to M’s teacher put it all down to bad parenting. It can be quite satisfying to wave the diagnosis report in their face telling them, “I told you so!”
We learned to never leave Matthew to his own devices. I mean, you can trust a child not to open an upstairs window and try and climb out, right? Leaving him in the bathroom was a non-starter. Standing on the edge of the bath with wet feet might be great fun for Matthew but not for us! Our ASD lad had – and has – no concept of personal safety. Whether its in the house or out of it. You end up protecting them as much as you possibly can. It might see, like overkill, but when they’re quite happy to wander off with strange children because they can’t recognise the dangers in that you realise that they need that extra bit of protecting that “ordinary” children don’t purely because they can recognise danger signs.
Fighting Matthew’s corner at school has been a big part of being an autism parent. Battles with education authorities is something all parents of autistic children need to come to terms with. Often the school won’t see the kind of behaviour you have to deal with while they’re at home. Like our aspire Daniel who is well behaved at school while often being in constant meltdown at home. You get the feeling the school just feels like you are making it all up. Its seemed that way with Matthew, and its only this year that he’s got the support he so desperately needs. It comes a year after bullying of him was basically ignored until he snapped and belted the bully. I still say,, “good for him but who was effectively punished? Of course it was the poor boy M hit. There was no recognition of how hard Matthew finds school, both in the classroom and in the playground.
Helping Matthew negotiate these social minefields is hard work in itself, and he needs constant reminders – several times daily – of what is and isn’t appropriate behaviour. Its all these things that come naturally to neuro-typical children that we as autism parents have to deal with. Eventually you develop coping strategies to deal with our ASD kids and move on. Suddenly you realise that hey, your child doesn’t have meltdowns because you’re the bad parent professionals who should know better have tagged you as. No, you realise that your child is managing to cope with life because you’ve become good at being an autism parent. Its not what Jane and I had in mind when Matthew was born, but its what we’ve learned to deal with. I’d not change Matthew and Daniel for anything. Autism has made them the children that they are and on Autism Awareness Day, we need to recognise that fact. Autism hadn’t damaged our ASD children. Its made them the people they are. Its what we do as autism parents. We learn to help them to give them a chance. Here’s to you ally autism parents out there. Have a great Autism Awareness Day!