Always Autistic

Jimmy is still autistic. Obviously.

We’re still waiting for his autism assessment. The older he gets, the more classically Aspergers’y he becomes. Things that were within normal behavioural limits a year or so ago are now evidently not.
He’s struggling with the concept of the baby. I don’t think he will give a shit about the practicality of having a new baby - he doesn’t see such things as affecting him, they are beyond his emotional compass - but he is worried about the change. Combined with fears about moving into year 2 and having to do more work, and he’s not a happy little boy at the moment.
His behaviour at school has become very violent, and he’s now almost unteachable. He just doesn’t stay in the classroom long enough to take anything in. They let him wander, because when he is ready to pay attention, he comes back and is much easier to teach and less disruptive. He ran away recently and he’s started physically stimming, where it’s all been mainly verbalised before. He bites nonstop - he has a biting chew thing on a necklace because otherwise he bites children or himself. He’s been known to try and break his own bones. His sensory overdevelopment is not getting any easier to deal with. The school can't do much until he gets his autism assessment, so we remain in limbo. Sixteen months of waiting and it doesn't get any less frustrating.

At home, he’s not so bad. He has the odd meltdown, but we mostly keep him in an environment he can cope with and give him plenty of warning if we’re going anywhere. For the first time ever, we managed to have a good family holiday, because we've learned to manage our expectations of him and protect him from unpredictability. He doesn’t sleep through, but he rarely screams all night long. It is a blessed relief.

It’s hard work. It will always be hard work. I don’t really mind. I get very angry when people (most usually school staff) suggest I’m not doing everything I can to put boundaries in place and support him. You cannot SURVIVE parenting an autistic child without a strong framework of rules and boundaries; to suggest I don’t have enough undermines the enormous improvement he’s made over the last two years as well as me as a mother.

It’s hard to explain that autism doesn’t get better. It doesn’t go away. You cannot rewire a child’s brain to make them work the same as everyone else (and would you want to?), but you can help them learn coping strategies and understand other people’s behaviour in a way that makes sense to them. The greatest gift you can give to your autistic child is empathy - to see the world from their eyes, instead of expecting them to see it through yours. In fact, fuck autism, that’s true of ALL parenting.