“It’s as if a social problem has been unearthed and fallen into the lap of counter-terrorism professionals,” said Jonathan Hall, QC, the independent reviewer of terrorism legislation. He was calling attention to what he described as the “staggeringly high” incidence of referrals of autistic people to the government’s anti-radicalisation Prevent programme.
Hall said these were usually “autism plus” cases, in that there were typically additional issues – unstable family backgrounds for example – that drew autistic people into this arena.
But he was surely right, with all due regard to the need for public protection, to question whether the “criminal justice outcome” was the right one in all these cases.
It should always be remembered that the numbers of autistic people involved with Prevent are small in proportion to the 700,000-strong autistic community in this country. Most autistic people are law abiding. Obsessively so, in some cases.
A bigger, but arguably related, problem in terms of scale is the number who end up getting locked up not through the criminal justice system but under mental health provisions.
The National Autistic Society recently highlighted the most recent figures showing that there were 2,055 autistic people and people with learning disabilities locked up in mental health hospitals. The share of that number accounted for by those with autism was 57 per cent of those, or 1,165.
The Society reported some progress with moving people with learning disabilities out of these places. However, the same is not true of autistic people, who made up only 38 per cent of the number in 2015.
Needless to say, a hospital, with its array of stressful, sometimes violent and often unpredictable sensory inputs – brights lights, sudden loud noises and the like – is a terrible environment for an autistic person to be in.
Once they get there they can easily get stuck there. The average stay is 5.6 years, the average distance from home more than 60 miles.
There aren’t many crimes for which you can expect to get locked up for that length of time.
Autism is not a crime, but the way people with the condition and their carers are treated could easily be described as criminal.
What they require is support, and professional assistance where necessary, to deal with problems as they arise. That support is all but non-existent.
Just getting a diagnosis can be a long and gruelling struggle. However, when you’ve cleared that (high) hurdle with Child & Adolescent Mental Health Services (CAMHS) you’re often left to swing in the wind.
I couldn’t help but contrast the way our son’s diagnosis of autism has been handled with what happened after I was diagnosed with Type 1 diabetes when I was a child. That may seem like an odd comparison to make. But bear with me. There is a read across.
While my condition is physiological – T1 is an autoimmune disorder – and autism is developmental, they are both with you for life. They both require management. If the latter is effective, it is possible to live what people like to describe as “a normal life”. Without it, things can get messy.
After my diagnosis, I found myself under the care of a consultant and I’d have a hospital appointment every few months. Tests would be conducted. When interventions were necessary, they were made, and quickly. Guidance was given. Education was made available. Ditto access to specialists.
This contrast with what happened after our son’s diagnosis of autism could hardly be more stark.
We were merely given the number of the National Autistic Society and sent on our way. Speaking to other parents, and hearing their stories in seminars at the Autism Show in London pre-pandemic, we found this to be far from uncommon.
To get any support requires you to steel yourself for a long and gruelling struggle. We’re still smack in the middle of two of those, involving our local council (Redbridge) and Child and Adolescent Mental Health Services.
Phone calls and emails are typically ignored. Legislation that is supposed to define what is available is either brushed aside or twisted. A favoured tactic of councils is to demand that you satisfy an impossible number of criteria before they will move into action.
I’m only too well aware of the funding issues they face. But when you are constantly smashed into a wall of brutal bureaucratic callousness, the manipulation of statute, the sheer ugly cynicism local authorities indulge in, that rapidly falls away.
We are fortunate in one respect: we have the resources – which inevitably means the financial resources – to hunker down for a long war. Our son’s school is very supportive and we have the means to engage private assistance while we’re wading through the swamp. We also know how to navigate the system, which often simply means pushing, and pushing, and pushing.
Those that don’t have the same resources are basically left eyeless on a battlefield with retreat being the only realistic option open to them.
This is where we circle back to what Hall had to say about Prevent referrals, and also to the Society’s figures on the horrific number of autistic people locked up in unsuitable mental health facilities where they shouldn’t be.
It is because there is often nowhere else to go. It is because, after diagnoses are made, people are handed the phone number of a charity while they’re sinking in quicksand. It is because repeated government promises to address this rotten situation have been broken.
This is an appalling scandal that is only rarely discussed. To change that, it often takes someone like Hall to say, in polite lawyerly language, the equivalent of “this shouldn’t be happening”.
And no, it shouldn’t.