World Autism Awareness Week

Joan Ryan Excerpts

Thursday 28th April 2016 Commons Chamber

[Jon Cruddas (Dagenham and Rainham) (Lab)]

Last Saturday, anticipating today’s debate, and in his customary elegant way, Guardian columnist John Harris wrote an excellent summation of some of the issues around autism. He ended his piece with these words:

“Our culture still too often couches autism in terms of pity or fear as an essentially Victorian sensibility lingers on. But we are moving towards a new world in which autistic people and their families advocate for themselves. For them, the current noise about autism perhaps highlights an inevitable phase of any struggle against ignorance: the point at which you know you’ve come a long way but still have light years to go.”

When we consider the debates and the legislation passed in this House regarding autism, we understand that we, too, have come a long way, and a significant reason for that has been the work of the right hon. Member for Chesham and Amersham (Mrs Gillan). I therefore congratulate her on securing this debate and on all her work over many years in this area, not least as chair of the all-party parliamentary group on autism.

In my short contribution I will focus on a few issues. The first is that of diagnosis delay, something that every Member in this House will have countless examples of. It is the focus of the National Autistic Society’s brilliant campaign and is flagged up in the motion. As we have heard, for children the average diagnosis time is now some three and a half years. In my experience, from talking to parents, carers and experts, that is partly down to insufficient training among NHS people and cost pressures within the system. The reality for parents is that if they do not know where to turn and are without a diagnosis, there is not much that they can access.

Secondly, I will focus on what appears to me to be the biggest single problem, which is that people have to deal with a system of immense complexity, which is buckling under the cuts and has no single point of contact marked “autism”. For many, the system is simply bewildering and often very scary.

Finally, I want to highlight the campaign work being done by amazing people at local level, including my constituent Fay Hough, who only last week led a large demonstration outside Havering town hall demanding better services and support for autistic people and their families.

I will also make a couple of points about the nature of research into autism in the UK and how it might be developed, to help both our overall awareness and, most importantly, autistic citizens and their families. Recent figures suggest that roughly 1% of the UK population has an autism spectrum condition, a twentyfold increase in the 50 years since the first epidemiological study. Given that, we need more and better research.

We can detect a dramatic expansion in autism research, especially in the US. For example, the 2006 Combating Autism Act authorised some $950 million for autism research over a five-year period to develop screening, early diagnosis and children’s intervention strategies. It has been estimated that in 2010 alone, investment in autism research in the US exceeded $400 million.

Here in the UK, research from the Centre for Research in Autism and Education at University College London suggests that public and private funding organisations invested some £21 million into autism research between 2007 and 2011, amounting to a significant increase. The question is whether that research is focused on the correct issues and whether it tallies with the needs of autistic people and their families.

I refer to an article in Autism, “What should autism research focus upon?”, which suggested that

“research activity should be broadened to reflect the priorities of the UK autism community, focusing in particular on research that helps people live with autism.”

It would appear obvious that research should maximise its impact on the life experiences of those affected—our constituents—so why might this apparently self-evident objective not be the case?

When we look at the debate about autism research, there appears to be a tension between two types of project. On the one hand, there are projects that focus on what we might call the basic science of autism—on neural and cognitive systems, genetics and other risk factors. On the other hand, there is research focused on the understanding and promotion of how families function and the services those families need. Evidence suggests that that tension has been identified in the US and that as a result there is a growing diversity in research funding, to the direct benefit of autistic citizens and their families.

In contrast, evidence from the Centre for Research in Autism and Education suggests that that diversification of funding has not occurred in the UK, and that projects in the areas of biology, the brain and cognition outstrip all other areas of autism research by a vast margin, in terms of both the numbers of projects and the total research grant. The effect is that very little research funding is directed into identifying effective services for autistic people and their families—that is, research on services, treatments, intervention and education.

Obviously, that is not just an academic issue, but relates directly to all the questions about autism awareness discussed this afternoon. Research by the Centre for Research in Autism and Education suggested that the families of autistic people value research into the underlying causes of autism, but need a more balanced distribution that redirects attention on to their daily lives, their needs and the services afforded to them.

[Joan Ryan (Enfield North) (Lab)]

I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this debate, and my hon. Friend the Member for Dagenham and Rainham (Jon Cruddas) on his powerful speech. Durants school is a secondary school for young people with autism in my constituency. Its governing body has written to me to express concerns that with the Government consultation on changes to the national school funding formula—including that for high needs—there will be a levelling down and funds will be drawn away from those schools, which would be very damaging.

[Jon Cruddas]

The issues that some of us planned to raise in the debate that was cancelled on Monday evening concerned precisely some of the pressures on the system, especially for special needs children. That takes us back to a point that I wished to raise about problems with diagnosis, entry points into the system, and the cuts that are being experienced. Those things are all linked to the research base around autism and effective public policy making, and to the concrete problems of commissioning services, the decision-making of front-line staff, and the dilemmas facing autistic people and their families—it is basically the existing evidence base for decisions on autism and public service provision.

I look forward to a reorientation of the research priorities for autism to balance out research funding and projects, as appears to have been achieved in the US. We need to balance scientific research with under- standing the needs of the most effective support offered to autistic citizens and their families, as well as greater co-ordination with autistic research, which again appears to have been achieved through strategic oversight in the US. Finally, we need the involvement of autistic people and their families in those strategic decisions—basic issues of democracy are involved in this debate.

It is great that we are having this debate today, and another sign of progress. To return to the words of my friend John Harris, whose family have tried to navigate through this system for many years, we appear to be at a point at which we know we have come a long way, but we still have light years to go.