World Autism Awareness Week

Helen Hayes Excerpts

Thursday 28th April 2016 Commons Chamber

[Helen Hayes (Dulwich and West Norwood) (Lab)]

I am grateful for the opportunity to speak in the debate, and I too pay tribute to the right hon. Member for Chesham and Amersham (Mrs Gillan) for securing it and for her long-standing commitment and hard work on this issue.

Over the past year, I have been contacted by several parents of children with autism—parents who are proud of their children’s abilities and who, like any parent, simply want their children to receive the support they need to live the best life possible.

I have been contacted by enough parents to be able to see what some of the problems and challenges are—they are many, and they cut across different areas of public sector responsibility. I have represented parents of autistic children who are struggling to get a diagnosis for their son or daughter, which is a significant problem. Just as worrying, however, are the families whose child has a diagnosis but who are still struggling to secure the additional resources and support they need, whether that is support in the classroom, transport to get to and from school, help to access housing that is appropriate to their needs, or help with the welfare system or healthcare.

Across the public sector, there is a lack of understanding of autism and its impact on families. Families face stigma and stereotyping. The complexity of autism is not understood, and that results in parents facing weekly and sometimes daily battles on behalf of their children, just to secure the basics.

Earlier this year, I was privileged to meet Isabelle and Robin Garnett, whose 15-year-old son Matthew has autism. Isabelle came to see me at my surgery to tell me about the terrible experiences Matthew was having because of his mental health needs. I would like to focus today on the particular problems of people with autism who also have mental health needs.

Last summer, Matthew Garnett’s behaviour and level of distress deteriorated, and his family were finding it more and more difficult to cope. Eventually, Matthew assaulted his father, resulting in his parents calling the police—an absolutely heart-breaking situation for any family. Matthew was sectioned under the Mental Health Act and taken to a psychiatric intensive care unit in Woking, many miles from his south London home.

Psychiatric intensive care units are for short-term assessment; they are designed to diagnose a patient and to determine the treatment and support they need, and then to make an onward referral within six to eight weeks. Matthew’s doctors quickly identified that the most appropriate place for him was a unit at St Andrew’s, Northampton. St Andrew’s accepted the referral, but to Isabelle and Robin’s great distress, Matthew remained in Woking for a further six months, moving to Northampton only after a persistent campaign by his family, and after I had repeatedly raised the case in Parliament and with the Minister.

I am grateful to the Minister for meeting me and Matthew’s family, for recognising the extent of their suffering and the many serious issues with Matthew’s care, and for initiating a review of his case. I look forward to seeing the results of the review and to discussing it with the Minister.

One of the most troubling aspects of Matthew Garnett’s situation was the absolute absence of autism awareness or specialism from the care he received while he was in Woking for six months. There was no recognition of his need for routine and structure, of the impact of his diet on his condition or of the detrimental impact of too much screen time on his mood and level of anxiety. As a consequence, his physical and mental condition deteriorated while he was in Woking. He gained weight, became more withdrawn and broke his wrist; his social skills and reading ability regressed; and he became more anxious and frightened.

Matthew’s parents launched a brave campaign to get him the treatment he needed. In doing so, they engaged with many other parents of children with autism and mental health needs. Working with the National Autistic Society, they launched a questionnaire for parents of children with autism and mental health needs. Within a few days, more than 800 parents had filled out the questionnaire, and the results are very troubling. Almost half the respondents said that, prior to their child being admitted to hospital, they had received no support in the community for autism or mental health needs. Some 85% of those whose child had been admitted to hospital said they had received no autism-specific support. Almost half said they did not feel consulted about, or involved in, decisions about their child’s care when they were in hospital. Finally, 61% said that, after their child was discharged, no arrangements at all were made for suitable support back in the community.

Children with autism, and their parents and carers, deserve better than this. While I am grateful to the Minister for his engagement with Matthew Garnett’s family to date, I urge him to pick up the wider set of issues and challenges in the mental health care system and across other areas of the public sector and to ensure we have a fairer deal for families who face these daily, heart-breaking struggles and appropriate resourcing of the support they need.