Denise Mitchell highlights the battles she has faced to get the right education for her son.
My son Matthew, 18, and has a diagnosis of ASD (Autistic Spectrum Disorder). He is one of a handful of young people in the Rotherham area who are identified as having Pathological Demand Avoidance (PDA) traits but no formal diagnosis. Rotherham Metropolitan Borough Council does not recognise PDA.
Matthew’s educational journey has been difficult. We’ve engaged in battle with one organisation or another for 14 years. This is our life now.
Fighting for the right school
Matthew started at his local Catholic primary school in 2006. The Catholic ethos of the school didn’t lend well to ASD/PDA and it became clear that Matthew was taking what he was hearing very literally. He was going to Hell, “That’s where you go when you’re naughty.” He thought it would be better to be dead, because “Heaven is a better place, Mummy, and you deserve a better son.”
Following a nightmare world of harassment and cutting a very long story short, he was permanently excluded, after years of ‘unlawful’ exclusions. He was 9 years old and clearly traumatized. To this day, the words, “There has been an incident,” haunt me.
Matthew attended a PRU, until a ‘suitable’ school was found. There were none! We had to make do and mend. The LA pressed for him to attend a mainstream school, so we found a mainstream primary with an autism resource hub. Matthew recently disclosed that he was terrorised at this school. He was put in a ‘blue room’ on his own for hours on end, screaming and crying for his mum and for someone to help him. His fear was such that he told me, “It made me want to want to wet myself Mum. He was only 10 years old.
His secondary education was no better. He attended a school for children with moderate learning difficulties. He was bored and frustrated, as he doesn’t have a moderate learning disability. Again, he found himself locked in a padded room, alone, my heart was breaking as I heard him screaming and crying “Mummy help me!” when I picked him up. Matthew was bashing his head against the only hard surface in the room, the glass window in the door. Eventually, I removed him from the school.
What happened next
We thought we had been given the golden ticket, when the LA told us we could go and find specialist provision for Matthew. I scoured independent specialist schools, eventually finding one out of the area. It wasn’t perfect, but nothing is. They assured me his needs would be met, they weren’t.
I work for DfE (Dept for Education) and I know how schools are run. I used this knowledge to conduct my own investigation into the school and was incandescent with rage at what I found. The school was admitting vulnerable children but had not been performing even the most basic of statutory requirements. Senior staff were incapable of performing annual reviews and Matthew’s EHCP laid in a virtual drawer for years, despite reaching transition age. I removed Matthew from this school in December 2020.
I’ve complained to both the school and the LA, both of which are ongoing. CAMHS refused to assess Matthew when he was a child, we were told “He has ASD, it’s to be expected.”
He is now an adult with severe mental health problems, low self-esteem and little self-confidence. I believe Matthew has PTSD and I am battling to have this recognised and treated appropriately, but will he engage? He believes his life is over at 18. He considers his education ruined and he has had all of his life chances. He blames himself, I blame myself.
I wish I’d educated myself more. I wish I hadn’t trusted everybody to do what they said they would. I wish that I’d fought harder! You yourself may have had these thoughts. It ISN’T our fault, we do our best with what we are given. It is the system that is at fault. We should be able to trust those whose job it is to provide our children with a meaningful education and I plan to hold those to account who didn’t do their jobs.
Written by Denise Mitchell a parent of a son with PDA.