Neurodivergent K, on parents:

If you feel ‘demonized’ by someone with a disability calling out problematic behavior, then maybe you need to look at yourself and why you feel hurt, especially if you insist you aren’t Like That. If you are so deeply hurt by hearing about specific things that specific shitty parents have done, dig deep inside yourself and figure out why that is.

The community debate is still rumbling, and likely to do so for a very long time. For the record, I’m pretty much of the ‘you can only be a member of the autistic community if you’re autistic’ side of things, with NT parents/friends/colleagues being (hopefully) allies. This fits with the ‘only a member of the GLBTQ community if you’re GLBTQ’ “only a member of the Jewish community if you’re a Jew’ and so on.

And a large part of this stems from the knowledge that not all parents (or carers) seem to be allies. And why should neurotypical people who behave badly get a free pass into the community, a pass that lets them actively work to silence voices of autistic people?

In fact, some seem to be woefully uninformed, and have little or no interest in understanding autism.

Neurodivergent K, again, on a carer:

She thought I was kidding. I wasn’t. She quit shortly after-apparently apologizing to a just turned 10 year old was beneath her, or to an autistic kid, or being told to by an autistic adult, I dunno.

Case in point:

A mother attends the emergency department with her mid-teen son, a non-verbal autistic, and ‘support worker’. When trying to establish his level of comprehension and functioning, I asked if he used any communication devices, like a picture board.

‘He uses one at school.’

‘What about at home?’

‘Oh, no. We don’t bother with it at home. If he wants anything he just points.’

So at home, this child’s communication is limited to wanting something, pointing, and having meltdowns because he can’t make himself understood. How would she have coped as a teenager if every time she walked out of school she had to wear a gag until she returned?

I also noted that every time a door opened nearby, letting in the noise from the waiting room, the child tugged at both his ears. The mother and carer were convinced this meant he had an ear infection. My suggestion that it could be the noise was dismissed with ‘It’s not that loud.’

As part of the examination I wanted to look in his throat. From her position standing behind him, out of his vision, his mother reached round, grabbed his jaw and tried to force his mouth open with both hands.

Neither she nor the support worker seemed to think this was an inappropriate way to handle an autistic child in an environment unfamiliar to him. And something the paediatric consultant said to me a couple of years ago floated through my mind.

‘I can diagnose them with ADHD, or ASD, or any developmental condition. Then I have to tell them if they want services, they’ll have to move. Because there are no services in this area for these conditions. None.’

And I feel a little bit sympathetic for this parent. But then the sympathy is overwhelmed by the realisation that even if there aren’t services, there are ways to find out about autism. It’s easy to get on the net and discover why getting grabby with an autistic child will distress them. There’s plenty on sensory issues and noise. It’s also pretty straightforward to grasp that the communication methods they use at school will also be useful at home.

And what is my role? I, too, have seen enough on the net to learn that an autistic person suggesting that a parent is doing something that makes life more difficult for the child is likely to be met with disdain, irritation, or outright hate. The consultation was driven by the parental agenda; child behaving differently, covering his ears whenever it gets noisy, normal children pull at an ear when it’s infected, therefore must be an ear infection, must have antibiotics.

I dread to think what it must have been like for the child, yanked into an unfamiliar, noisy environment, prodded by a stranger. I tried to explain to him, to show him equipment before I used it, to kneel in front of his chair so he could anticipate what I would do, but I know that he was probably so overloaded he couldn’t take any of it in. It was unsatisfying on every level; failure to communicate with the child, failure to fulfil the parent’s agenda, complete shock at the whole situation.

Some people would say he was one of the lucky ones. He’s well fed, clothed, he’s not being beaten or abused (probably). But if he’s not being given the opportunity to communicate to the maximum of his ability, then he’s still locked away. If a parent dismisses his communication as not needed at home, then he is being denied agency over his own life.

That many parents would leap in with the ‘it’s her child, she knows what’s best, how dare you criticise’ line, terrifies me. Because the people who bear the consequences are not the parents. Because I see, all over the net, adults who were nonverbal as children writing blogs, communicating with the world. Some of them are nonverbal as adults, too, but that doesn’t mean noncommunicating. And autistic kids who won’t ever reach that level of communication still deserve encouragement to make their needs and desires known.

There’s a conversation I’d like to have, but I know the chance it will deteriorate and I’ll be the bad guy is close to 100%. And I don’t have the resources to handle that kind of conversation. When my need to do what’s right collides with people who are bent on dismissing anything I say, I head rapidly towards meltdown. I abandon discussion because I’m too overloaded to process coherent replies. I see all the ways in which the conversation can go wrong, and the anxiety is too great, because when you’re autistic, the one thing you know without doubt is that NTs will command this kind of discussion.

So I said nothing, and they wheeled the child out into the rowdy waiting room, ignoring him as he clutched his ears and swung his head from side to side.