My 13 year old child is diagnosed with ADHD and ASD; he has a PDA profile which means ‘pathological demand avoidance’. This is an atypical presentation of autism which means he struggles with the demands of ordinary life.
I’m sure others have presented submissions to this committee explaining more about what this presentation of autism means in practice.
In many ways, it is a hidden disability. But it is very, very real.
The usual strategies for supporting autistic children don’t work with PDA children, in fact they often have the opposite effect to that desired.
Anxiety levels can be exacerbated by inappropriate interactions with teachers making demands that the child simply can’t cope with, even (and perhaps especially) when the teacher doesn’t see it as a demand.
Anxiety levels can lead to severe reactions in PDA kids. My child can get rude and aggressive if he feels unsafe. He needs to be understood so those situations can be avoided and early warning signs detected and managed before they become an issue.
My son had to change high school after the first semester as he couldn’t engage at all with the curriculum due to his disability and lack of understanding and resources to support him.
He swapped school in the middle of year 7. The new school (a government school ) has been able to work with him (and with us as his parents) more effectively than the private school but, even so, his attendance over the first semester of this year has been around 34%.
Children like him need:
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teachers to be trained in what works, and what doesn’t, with PDA kids
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strategies for engagement
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access to a modified timetable so they can access at least some basic schooling. My son simply couldn’t cope with a full day and often can’t cope with attending at all
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safe places for autistic children to go when they cannot cope with the demands of the classroom
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I’ve heard that the schools with specialist autism programs are great but they are generally very oversubscribed. Even if we could get a place, they are all at least a 40 minute drive from my house and inaccessible from where we live by public transport.
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I would need to give up my full time job to be able to transport him every day, especially given the amount of times he needs to leave school early due to his modified timetable, increased anxiety or an incident that requires an urgent response
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if my child gets to the point where he cannot attend school at all, which is a very real prospect over the next couple of years, I will have to give up work completely.
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I am not a teacher and would not be able to home school him. Even if I knew what I was doing, there is zero chance that he would engage in any curriculum based activities at home. He has never even been able to do regular homework.
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if the school system cannot cope with my child and my child cannot cope with home schooling, he literally has no access to learning. He will have even more challenges with accessing employment in future and will forever be a drag on the welfare state
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but my child is intelligent, bright, and deserves better than that Please do whatever you can to help the education system be inclusive of children like mine.
It’s not that he ‘won’t’ go to school like the other kids; he simply can’t.
He’s not giving the teachers and the other kids a hard time, he is having a hard time.
He would love nothing more than to be like his siblings and the other kids he sees.
But he’s not.
He knows he’s different and he hates what it means. He has no friends (literally). He knows he makes our family life much harder than other families. He says we’d all be better off if he was dead because then we would to have to deal with him any more and he wouldn’t be ruining our family any more.
We love him so much.
Can you imagine what it is like to have a child who feels so disengaged from his peers that he thinks there is no place for him in our school system, our society?
Autism is a spectrum and every kid with ASD is different. They all need to be understood and accepted for who they are and what they can do. Not criticised or punished for what they can’t.
It breaks my heart writing all this down.
Please do what you can to help my son and all the many, many other kids out there like him to have a future. It all begins with an education, self belief and knowing that he is valued.
Thank you for reading my submission.