06/02/2025
Be warned this is a very tough watch. Five families, desperate for help and not getting it, resort to inviting the TV cameras into their homes to film their daily struggles with their autistic children. The parents love for their children is obvious and profound, but the children challenge them to the extreme. Watching it, makes one question who were the people who advised these parents when the children were younger? What advice and instruction did the families receive that could lead to things getting this bad? Some scenes are very upsetting. These parents are all good parents. They did what the experts told them to do but now services will not enter the home for fear of physical assault and injury. The risks are to them are too high apparently.
There is no respite and almost no support from other services. Meanwhile the children at the centre of it all are dys-regulated, terrified and angry. Over the years, they have grown in experience, size and strength. They seem to fight as if their lives depend on it. Despite fighting a losing battle, the parents still try to lay down the law by using physical management, behavioural rewards and sanctions but nothing is working. Things are just getting worse. It’s only a matter of time before someone raises a safeguarding alert and the system will deem it necessary to remove the child and send them to a specialist, often far-away and massively expensive, facility where experts in behaviour support will no doubt conduct another functional behaviour assessment. The system’s reliance on the behavioural approach means it has no new answers, and its only response is to do more of the same.
WHAT IF these parents had been supported from the start by professionals who focused, not on ‘behaviour’ but on gentle teaching, co-regulation and neuroscience? About 10 years ago, I worked on a proposal to support local families where the child was at risk of being sent to residential schools due to their challenging behaviours at home. In the end, despite enthusiasm from top commissioners for a pilot project involving five families, nothing happened because those same commissioners also wanted the work to fit into the Positive Behaviour Support model, they’d recently committed so much money and resources to. I was advised it would be enough to just call what we were doing ‘Positive Behaviour Support’, even if it wasn’t strictly PBS. That was the end of it and the project never got started. I remember telling one senior clinician I would rather lose everything and live in a campervan than jump on the PBS bandwagon just to get funding. Ten years on, we know a lot more and there is a lot more research to support approaches that are not behaviour-based. Maybe it’s time to revisit that old proposal …
Mums show Tara Mills the challenges of living with autistic sons whose outbursts often injure them. She hears how they feel there is no safety net. Extraordinary personal videos.
