Autism

Part of the debate – in the House of Commons at 2:13 pm on 29th March 2018.

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Photo of Helen Hayes Helen Hayes Labour, Dulwich and West Norwood 2:13 pm, 29th March 2018

I am pleased to be able to contribute to this important debate. I thank Dame Cheryl Gillan for securing it, and for all her work in Parliament over many years on behalf of autistic people.

My engagement with autism comes through the many constituents who have contacted me since my election in 2015, through the experiences of friends with autistic children, and through the especially harrowing case of my constituent Matthew Garnett. I first met Matthew’s mother Isabelle in February 2016, when she came to my surgery. Isabelle told me that that Matthew, who was then 15, had been sectioned after a crisis in which he had attacked his father at home. He had been admitted to a psychiatric intensive care unit at Cygnet hospital in Woking, a private unit designed for assessment, diagnosis and onward transfer in which patients should stay for no longer than six weeks, but where Matthew had been for several months. The unit had no specialism in autism, and it has subsequently been closed after the Care Quality Commission found serious failings.

Matthew’s family, in their desperation to see him moved from Woking, had identified St Andrew’s hospital in Northampton as a specialist unit that appeared to have the expertise to meet his needs. I helped them to secure a place there. Soon after Matthew’s move to St Andrew’s, his parents began to express serious concerns about the treatment that he was receiving. There was little evidence that he was participating in any therapeutic or educational activities, he seemed distressed and withdrawn and, most worryingly, he had started to lose weight extremely quickly. When I visited him in St Andrew’s with his family, I was shocked at both the condition he was in, and the attitude and behaviour of some of the senior clinical staff whom I met. The subsequent complaints that his parents and I made, combined with a “Dispatches” documentary on his case and those of others at St Andrew’s, led to investigations, including one by the General Medical Council. I understand that some changes have now been implemented there.

Matthew’s family again identified an alternative provision for their son: Alderwood, also based in Northampton. This time, things worked out well. Matthew is living in supported housing with other young people. He is well and thriving, taking minimal medication, volunteering at the local football club, and participating in his local community. This could not be more different from the time that he spent in hospital, held under section.

I raise Matthew’s case again today because there is still unfinished business arising from it, and because although, thankfully, Matthew is now well and thriving, the experiences that he and his family have had resonate in many different ways with the experiences of autistic people up and down the country, including many of my other constituents.

For too many families, there is a constant struggle to access support. The then Minister responsible for mental health, Alistair Burt, commissioned a review of Matthew’s case from Dr Michael Marsh, and the report was published in June 2016. It catalogues a constant struggle on the part of Matthew’s family with every public service with which they had interacted since he was two years old to secure the support that he needed.

As other Members have said, there is a lack of expertise and understanding of autism across health and education services. I have heard from many parents that the experience of their autistic children in education is only as good as the expertise that any given teacher has in any given year. Mrs Trevelyan spoke of her son’s experience of one particular teacher. The support given to autistic children in school should not depend on accident—on the experience of a given teacher.

In particular, there is a lack of understanding of the relationship between anxiety and behaviour in autistic children. Disciplinary measures do not work if a child’s behaviour results from that child’s being scared or anxious. Such measures will only traumatise children further in those circumstances. I echo what others have said today: not only do we need training for new teachers coming through the system, but we urgently need additional training for existing teachers. They need to learn what autism is and how best to support autistic children in their classrooms.

There is a lack of funding for assessment, diagnosis and SEND support. Too many families are waiting too long for assessment and diagnosis. I have heard many head teachers say that even when families have a diagnosis, it is often still insufficient to draw down the additional support that is needed because of constraints on resources. This is a false economy for families. If we fail children in the education system by failing to give them the support that they need, we condemn them to a life of struggle, often to mental ill health, and often to interactions with the criminal justice system. Moreover, that will certainly lead to much more public sector expenditure in a negative rather than a positive way.

Too many avoidable crises are experienced by people with autism, and that brings me to the importance of community provision. I recently visited a centre called Lifelong Family Links. It is in a neighbouring constituency, but supports many of my constituents with autism. It is a day school and after-school club for young people with autism. It runs on a shoestring, and is now at risk of closure because of funding cuts. The families there to whom I spoke told me that many of their children would be in the criminal justice system—and, in one case, a foster placement would have broken down—without the support provided by Lifelong Family Links.

Again, it is a false economy when in the current atmosphere of austerity we are unable to provide the tiny amounts for what community-based services provide—they deliver so much. There is too much hospitalisation of young people with autism, and that is often in the private sector, with very little scrutiny of the effectiveness of the care and treatment that is provided. Matthew’s private hospital bed cost £12,000 a week of NHS money for care that was making his health worse, and I support Matthew’s parents’ campaign for homes not hospitals for autistic young people.

I wrote to the Minister responsible for mental health and inequalities when she was new in post, and then again in November 2017 to request a meeting to review Matthew’s case and the lessons that can be learned from it, but a meeting has not been forthcoming. I therefore want to end by asking the Minister for Care, who is on the Front Bench today, if she will agree to meet me and Matthew’s family so that we can ensure that the suffering that he experienced was not in vain, and we can deliver the change we need for families with autistic children across the country.