Clare

Clare, in her mid-40s, is autistic. She also has complex post-traumatic stress disorder (PTSD) following ‘years of trauma’ and ‘years of mess’.

‘A lot of that is because I was an undiagnosed person with disability my whole life,’ she said.

‘I had multiple therapists just dump me after a couple of sessions and say, “We don’t know what to do with you.” Nobody recognised what was going on, you know … so I went through all the mess and ended up pregnant with [my son] and then my whole life changed with children … What happens when you have kids is your whole focus then becomes that little human and making sure they’re safe and okay.’

Clare has several children, now in their teens. They are all autistic.

‘We’ve got ADHD [attention deficit hyperactivity disorder] floating around and lots of PTSD,’ Clare said. ‘We’re all this.’

Clare and each of her children receive NDIS funding.

‘Handling that, learning that system, understanding that system and working it well for what the support needs are, is – is hard work.’

Helping multiple autistic children through the school system has given Clare insights she wanted to share. She told the Royal Commission that school is ‘not set up at all for an autistic person’.

‘It’s set up for people to be going and doing this learning in a set way. It’s not healthy for autistic children to be put into that environment.’

Most important is that kids are able to develop ongoing relationships with teachers and support workers.

‘The only reason that my son is attending school is because he’s built a relationship with his [support worker], and then he’s able to go in because he wants to see her, and he’s got another couple of mates there as well. And that’s the only thing getting him in there right now, he doesn’t go into the classroom, he sits outside in his own space.’

Such relationships are difficult to create at high school, where students work with numerous different teachers and support workers each day.

Clare went to a school meeting about her daughter and found she had been allocated four different support workers each day and was in classes with six different teachers. The arrangement was ‘not going to work’, she said, as the child needed ‘key people’ with her to keep her feeling safe.

She said this is why a lot of autistic kids ‘fall through the cracks’ at high school.

‘Because they’re having to build these bonds with somebody that they see for a very basic, brief amount of time. And the learning on top of that, it’s too much and they don’t cope.’

Two of Clare’s kids now go to an open access college, which involves online learning and regular face-to-face meetings with peers at school. This works much better for them than a normal high school.

Clare believes the mainstream system needs to think more adventurously about how to cater to autistic students. They need more than ‘a little basket of fidget toys on a desk in a corner’.

‘People aren’t being taught and trained in neuro-diversion friendly ways, they’re being taught potentially the wrong things. They’re not being taught by autistic adults what we need and what the kids need and that’s huge.’