The very nature of PDA means that the further my son goes through school and the demands on him grow, the less he is able to cope.’” width=”413″ height=”248″>
While most families in the UK have spent their half-term in pumpkin patches or picking out frightening outfits for Halloween, this week has been terrifying in a completely different way for parents of children with special educational needs and disabilities (Send). Two Guardian reports have highlighted the looming Send crisis our children are facing in school. I can tell you that crisis is already here.
My seven-year-old son has autistic spectrum disorder (ASD), with the added complication that he also has a diagnosis of pathological demand avoidance (PDA) – complicated because, although it’s under the umbrella of ASD, it isn’t recognised by most health authorities, and the condition – though on the autism spectrum – requires techniques very different from classic autism to manage it. In a nutshell, while my son is very bright, he has a host of complex needs that manifest as anxiety, which in turn presents in violence and aggression, meaning that he finds mainstream school impossible.
He has just started in Year 3 at our local junior school and I have been fighting to get him what he has been legally entitled to since he began formal schooling. When we – I must add that I can’t fault my son’s school, it has been completely supportive – first applied to get him an education health and care plan (EHCP), it was rejected. His condition wasn’t even considered severe enough to warrant an assessment. This is a child who has such extreme sensory needs that he goes into meltdown if there is too much noise, too much light, too many people in his personal space – all problematic in a mainstream school.
We fought this decision and eventually he was assessed by an educational psychologist who decided his needs warranted a full-time, one-to-one learning support assistant (LSA). Quite a leap from saying he didn’t need assessing at all. My son’s EHCP was finalised at the end of Year 2 – two and a half years after we started the process.
The very nature of PDA means that the further my son goes through school and the demands on him grow, the less he is able to cope. In those two and a half years, his needs changed hugely. He could no longer stand to be in the classroom because of the noise, smells and general busyness. He began to hit out – at other children, teachers, the head – because of his distress. His violent and challenging behaviours at home became worse than I’d ever known. He attacked his younger sister regularly. He began attacking me, which was completely new. I was bitten, punched, kicked, scratched, sworn at and – on one horrible occasion – strangled. He began making threats to harm himself, even attempting to climb out of his bedroom window. It was horrifying to see him in such distress.
I called an emergency review of his EHCP – knowing that being in the wrong school setting was at the heart of this. After consulting with the school, including the special educational needs coordinator, we all came to the conclusion that my son needs specialist provision. We put our argument to the local education authority, which attended the emergency meeting, and were told there were no places in local authority funded schools.
This is not just my problem or my son’s problem. Or the problem of his LSA, who has been attacked by him. Or the children in his class who are afraid of him because of his violent outbursts. It’s not just the Send child who is being failed by the funding crisis, it’s every individual they encounter during their highly stressful day in a setting that can’t cater for their needs.
That “emergency” meeting was in June. Since then my son has moved to junior school (and jumped up a key stage) and is struggling more than ever. He refuses to walk anywhere, and some days refuses to go to school, which has never happened before. He’s the most unhappy I’ve ever seen him and it breaks my heart several times a day.
There seems to have been very little progress in getting my son into a suitable setting. The LEA has apparently contacted some local providers, but they cater for social and emotional mental-health needs. My son doesn’t have mental-health needs. He is autistic and needs a setting that can help him manage his autism. The challenging behaviours are my son trying to communicate that he is struggling. When he is calm and his sensory needs are being met, he is the most loving and wonderful child you’ll ever meet. I know my child. And I know that if he isn’t given the education he’s entitled to, then he is likely to end up with mental-health issues, in common with 80% of autistic people, according to the mental health charity MQ.
Meanwhile, my future includes an expensive court battle as I try to persuade the LEA to fund a place for my son at an independent school that specialises in his condition. If the crisis isn’t already here, then what further awfulness awaits us?
• Katy Brent is a freelance writer and journalist covering parenting, lifestyle and entertainment
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