Just over a month ago I wrote a blog about my autistic son Matthew, and how he was stuck in an inappropriate psychiatric unit after being sectioned last September.
After five months of false promises and missed deadlines, a bewildering lack of communication, accountability and transparency, and with Matthew deteriorating by the day, we were desperate. We felt we had no choice but to go public with our story. No-one was listening, so we needed to shout louder.
We decided to launch a petition on change.org called 'Make Room for Matthew'. As this coincided with the launch of #youngmindsmatter, the Huffington Post were one of the first to take notice and suggest we write a blog. We emailed everyone we knew. We set up Facebook and twitter accounts. We proceeded to tweet to ourselves for a week while getting to grips with social media.
After a week or so, we had 4,000 signatures, basically everyone we knew and everyone they knew. But then something extraordinary happened: an online news article used the headline 'Autistic Boy thinks he's in Prison'. Matthew thinks and acts much like a five-year-old, and that is indeed how he has been making sense of his incarceration. But somehow that phrase really captured the iniquity of our son's situation, and how young people with autism and learning difficulties are treated as in some way sub-human.
Suddenly, the media went into overdrive. Local press, radio and TV outlets began to call. Then the national equivalents. On Oscars night, Matthew had equal billing on the BBC News website with Leonardo Di Caprio. People responded to the 'prison' story, but also two videos we shared that captured Matthew's decline from a happy-go-lucky boy singing his own 'father's day' song, to the dead-eyed, mumbling, anxious youth he had shriveled into.
My wife Isabelle began to appear on live TV interviews exuding the raw, unfiltered pain and fury about our son's plight that I think only a mother truly knows. One such interview on This Morningreduced host Holly Willoughby to tears, and media interest ramped up once again, bringing unprecedented attention to the cause. For a few hours #autisticprison was trending on twitter. Isabelle took the opportunity to directly challenge the Minister in charge of mental health, Alistair Burt, to meet us.
We took Matthew print-outs of the petition to show him that people were rooting for him, which I think he appreciated, but it was only when he saw himself on telly that it really hit home for him. He now thinks he's famous.
The petition went crazy. Tens of thousands were signing every day. Each time Isabelle posted an update, it triggered another swell of support. We passed 100,000 and it just kept going. 200,000, then a quarter of a million.
Calls and emails began to be returned for the first time in months. Senior figures from our local authority and NHS England, ultimately Alistair Burt himself, appeared out of nowhere and offered meetings with us. Last week, our petition was presented to Parliament by our MP; and then in person to Alistair Burt, by now with over 330,000 signatures.
After six and a half months, Matthew is finally set to move this week to a specialist unit for the assessment and treatment he so desperately needs. This is no nearer to our home, in fact it is even further away. And while friends have proclaimed our petition a victory, we are now only at the start of a long and difficult journey to get Matthew home, which should by all rights have begun last September.
But this whole uncomfortable, exhausting spell in the public eye has revealed something far more significant than 'just' Matthew's case. Thousands of those who signed our petition shared stories of their children disappearing into the Mental Health system - against their will, without due process, miles from home, without appropriate support, and often highly medicated. Abandoned and neglected very often for years on end, with seemingly no prospect or pathway to get these young people back to their communities and loved ones.
So while our campaign has been to get Matthew into an autism-specific in-patient unit, we have realized that a bigger issue is a total breakdown of the provision of appropriate care in the community for our most vulnerable young people. The solution is not in fact more units, but rather providing proper social care at a local level. With this, Matthew might never have reached a crisis point in the first place. Without it, it was almost an inevitability.
At present local authorities simply do not have the resources to deliver this care, so rather than recovering with the family that know and love the child the most, millions of pounds are wasted on banishing our most vulnerable members of society to far-flung units to languish without certainty, without love, without basic human rights, without dignity and above all, without hope.
You wouldn't accept this for your own child. Why accept it for anyone else's?Suggest a correction