World Autism Awareness Week

Luciana Berger Excerpts

Thursday 28th April 2016 Commons Chamber

[Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)]

I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan), and the other sponsors of the debate, on enabling the House to discuss the important issue of autism. Let me echo a remark that was made by my hon. Friend the Member for Heywood and Middleton (Liz McInnes). We have heard many excellent speeches, but I am particularly grateful for the contributions of Members who have shared their experiences as parents of children with autism. That added greatly to our discussion.

I welcome one of the central calls in the motion, the call for an enhanced national awareness campaign. Raising the profile and public understanding of autism would break down some of the stigma, tackle the prejudices, and make it easier to explain autism to those who remain unaware of the realities of the condition. I pay tribute to the charities working in this field, including the National Autistic Society, Autistica, and Ambitious about Autism, which are fighting for people with autism and their families. They are campaigning for proper diagnosis, decent treatment, social acceptance and full, productive and dignified lives for people with autism. I also commend the many organisations, campaigns, towns and cities that are doing so much to raise awareness. There have been many contributors to the debate, but I have only eight minutes so I hope that hon. Members will forgive me if I do not mention them all.

The National Autistic Society has brought some important survey evidence to our attention. It has already been mentioned in the debate, but it is worth reiterating that although almost the entire population of this country has heard of autism, only 16% have any real understanding of the condition. That reveals a huge gulf between awareness and understanding, which is why a national campaign to develop better awareness of the realities of autism would be a welcome development. It should be led by, and involve fully, people with autism and their families, so that the campaign can be authentic and focus on the issues that really matter. Research by Ambitious about Autism has highlighted two specific audiences for such a campaign: teachers—40% of whom say that they lack the knowledge they need—and employers and jobcentres. While 99% of young people with autism say that they want to work, only 15% of adults with autism are in employment.

It is clear that people with autism and their families face terrible prejudice and stigma. The figures in the National Autistic Society survey show that too many people with autism and their families feel socially isolated or do not go out because they are worried about how the public will react to their autism. My hon. Friend the Member for Lancaster and Fleetwood (Cat Smith) shared the fact that people do not understand what a meltdown is. People are sometimes asked to leave a public space because of behaviour associated with their autism. This paints a picture of social isolation and daily humiliation. Autism is a condition in which people have difficulty interpreting the world around them, and that is compounded by the reactions and hostility of other people.

It is obvious that we are a long way from having public spaces that are safe for all people with autism. I welcome the fact that my own city, Liverpool, has started a bid to become one of the first autism-friendly cities, but we need to become an autism-friendly nation. [Interruption.] The Minister for Community and Social Care, mentions Manchester from a sedentary position, and I note the remarks made by my hon. Friend the Member for Stalybridge and Hyde (Jonathan Reynolds) in that context. I hope that the Minister will address the issues of awareness, stigma and prejudice. I hope that he will also commit to supporting the Autism Access Award, to ensure that our public buildings and spaces are autism friendly. I am pleased that the House of Commons started work on this earlier in the year, and I hope that we can make progress to ensure that our workplace also becomes autism friendly.

Many hon. Members have mentioned the challenges relating to the Department of Health. Will the Minister tell us what efforts individual Departments and agencies beyond the Department of Health are making to support people with autism and which Departments and agencies have an up-to-date strategy for dealing with autism? What commitment will he make today to ensure that any that do not have such a strategy will adopt one?

The second substantive part of the motion relates to the length of time it takes to diagnose someone with autism. Many Members on both sides of the House have talked about this today. Autism requires an early diagnosis to enable individuals with autism and their families to be properly supported. As we have heard, however, adults are having to wait more than two years for a diagnosis, and for children, the figure now stands at 3.6 years. On my weekly visits across the country, I hear many of the stories that have been echoed in the Chamber today. In my own city, Liverpool, there are no fewer than 700 families waiting for an assessment. That is totally unacceptable; it is far too long. The long wait compounds the condition and makes a bad situation worse.

I have heard at first hand from the Liverpool Autistic Children’s Alliance, a parent support group that meets in my constituency, the difficulties experienced while waiting for a diagnosis, particularly in relation to education. The parents talk about not getting an education, health and care plan and therefore having no access to training to help them to support their children. They also speak of challenges in accessing appropriate education. We have heard that the NICE quality standard on autism makes it clear that people should wait no longer than three months, once referred, for their first diagnostic appointment. That standard is clearly not being met across the country, meaning that thousands of people are being let down. Given the importance of prompt, accurate diagnosis, I hope that the Minister will commit to asking NHS England to report on autism diagnosis waiting times for every clinical commissioning group in the country and then to hold them to account when the waits are too long. I hope that he will also ensure that NHS England’s new autism care pathway includes and reduces those diagnostic waiting times.

Research presented by Autistica and drawn up by the London School of Economics shows that the costs associated with autism are more than those of cancer, heart disease and stroke combined. They are at least £32 billion a year and include expenditure on hospital services, home healthcare, special educational facilities and respite care and lost earnings for both people with autism and their parents. Despite the costs, the outcomes for people with autism remain so poor. We heard during the debate about co-morbidities, extremely high rates of mental illness, poor physical health, social exclusion, lack of opportunities for employment and education, and, tragically, early deaths. Several contributions discussed the amount spent on awareness, but research also has the power to improve all those poor outcomes. Research spending on autism remains incredibly low at just £3 million a year, which is paltry given the scale of the challenge.

As shadow mental health Minister, I am aware that mental illness is also a huge challenge for people with autism, who are far more likely to have at least one mental health condition. The burden of anxiety and depression on people with autism is vast, about which we heard many personal accounts during today’s debate and which I hope the Minister will address in his remarks.

I will conclude on an important point about the fact that too many people with autism in our country are dying too young. The figures are startling. If we look at the research that was in the press only a few months ago, we see that people on the autistic spectrum die on average 18 years earlier than the general population. For autistic people with a learning disability, that figure rises to 30 years. That cannot be acceptable in this country in 2016. People with learning disabilities are at greater risk of suicide, and the most disturbing statistic is that the risk of people with autism committing suicide is nine times higher than that for the typical population, which is a scandal. I raise it during this debate because, as we have heard in some contributions, it is a particularly specific and pertinent issue that needs addressing, particularly in the light of the fact that suicide prevention organisations are not providing autism-appropriate services. From representations from many autism organisations, I know that phone lines for those who might be having suicidal thoughts are not appropriate for someone with autism. I hope that the Minister will address suicide prevention strategies and ensure that they are appropriate for people with autism.

I welcome today’s debate and its many superb, thoughtful speeches. I hope that the families listening to our discussions will feel that we are addressing their many concerns. I look forward to the Minister’s reply.