What’s the worst that can happen?
Today, we are sharing a really thought provoking guest post from a parent. This post shares how the worst that can happen, did happen to one young man and his family.
“I used to be an SEN Practitioner in a federation of mainstream primary schools in inner London. With a decade’s experience supporting children with SEN, I became the Lead Practitioner for autism, managing a support team that included SEN practitioner colleagues, teaching assistants, SENCOs and Deputy Heads. The team was making progress. We were not only changing hearts and minds (such as providing good quality training for Newly Qualified Teachers and on-the-job support for teaching assistants), but also providing crisis prevention support to avoid school exclusions.
As the National Autistic’s Society’s website tells us, ‘Behaviour has a function’ and we applied this principle every day. Where a child displayed behaviour that challenged, we looked at what that behaviour was communicating, made reasonable adjustments and taught the child the skills they needed to help them navigate the world with less anxiety and / or confusion. We didn’t always get it right, but we reflected and problem-solved, and tried again.
I loved my job. But this year, I resigned.
It wasn’t because of the systemic challenges to meaningful inclusion, such as Ofsted prizing attainment and attendance over inclusion. It wasn’t because of the trenchant funding cuts to education that saw SEN budgets felled by devastating blow after blow.
It was because of something much closer to home. It was because I saw up close and personal the worst that can happen when education, social care and health services fail a child with autism (and learning difficulties, and ADHD and OCD and a whole host of other labels).
You see this child reached crisis point because of ‘a failure in joint working between education, social care and health’. At crisis point, the child was taken to A & E where he was sectioned. He was then sent to an inpatient unit where he deteriorated catastrophically for sixteen months. He thought he was in prison.
I left my job because ‘that child’ was my child.
Some parents have said to me ‘Well I wouldn’t let that happen to my child.’ All I can say is that I trusted the professionals when they said the best thing for my son was inpatient ‘assessment, treatment and care’. Now I know better.
My son is not mentally ill – he has autism.
The underlying cause of his behaviour was anxiety and puberty.
In hospital, he was contained, face-down restrained, secluded and forcibly injected with anti-psychotic medication.
In the community, he has the right treatment (anti-anxiety oral medication), autism-specific care and a person-centred learning programme.
Now, he is safe, happy and learning. It’s not rocket science. And it’s cheaper than the hospital.
And as it happens, our son’s case isn’t isolated. There are far, far worse realities that other vulnerable young people with autism and / or learning difficulties have endured and for far longer. There are about 3,000 still living in inpatient units. And it is a national scandal that continues to be tolerated – even though the state wants ‘homes not hospitals’ for them.
I can’t go back to my job because I can’t see the day when I’m strong enough to witness another child reaching crisis point as the cuts to our local community services – to health, education and social care – continue unabated.
And to parents whose loved ones are at risk of admission to – or are in – inpatient hospitals, I would urge you to ask for an urgent Care and Treatment Review. You can find out more about them in our Survival Guide”
My pre-children years were spent in Editorial, first in books and then in journals. Then, when my son was diagnosed at a young age, volunteering in my local school became a career as a special educational needs practitioner. I became the Lead Practitioner for Autism across a Federation of mainstream primary schools, running its Autism Support Team. I was Secretary at my local NAS branch for many years and ran several local parent support groups.
When my son hit crisis point and was admitted to an acute treatment unit as an inpatient, I mounted a campaign for him to receive appropriate treatment and care in the community. Now, I am campaigning and working collaboratively with ‘Stronger Together’ families, NHS England, charities and other partner organisations to ensure that ‘Homes not Hospitals’ become a reality for all people with autism, learning difficulties or both.