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8 October 2008

Young People and Autism

John Barrett (Edinburgh, West) (LD): Living with autism is a real struggle for many families, and, for the vast majority of people, it is something that happens to somebody else’s family. That is why today’s debate is important, and I congratulate the hon. Member for Buckingham (John Bercow) on keeping it on the Government’s agenda.

For the people who are directly affected when a diagnosis is made, there is often a lack of information immediately available—where to go, what to do, who to contact, what help is available to families, what they are entitled to and what battles they will have to fight in the years ahead. If one message has come through loud and clear from parents, it is that in most cases they have to fight a constant battle to get even a fraction of the help, support and the education that their child needs.

Yesterday, we heard a very eloquent speech by a 22-year-old with autism who was doing a great job as a trainer of people working with those affected by autism. Unfortunately, her early education consisted of being bullied, spat on, called a freak and leaving her school because it could not cope with her behaviour. Fortunately, she survived and made progress later in life, so we must ensure that what happened to her a decade or so ago is not what children in the education system, either today or in the future, have to experience.

The hon. Gentleman eloquently laid out the challenges before us, and as the findings of the Bercow review have done much to frame the issue and bring it to the attention of Parliament, I put on the record my appreciation of the work that he has done in the past, his speech today and the work that he will no doubt do in the future. I would say he never could be described as humble.

Many parents of autistic children, desperate for help and support, will be encouraged by today’s debate, and we owe it to them to ensure that they are not let down. Although it is vital that we commit more resources to providing better education and more flexible support, that in itself will have a limited impact if parents are not aware of all the help to which they are entitled because, over recent years, much of the talk in education policy has emphasised the need for parental choice. However, owing to the complexity of the system and to a lack of information, it is often very difficult for parents of autistic children to make informed choices, and the Minister’s comments on the best way to overcome that information vacuum would be most welcome. Indeed, just yesterday, I was reading about the amount of unclaimed pension credit: it is one thing to provide the help, it is another thing altogether to ensure that the right people receive it.

The importance of accurate information extends beyond the help that we provide to parents to experts and policy makers. Research by TreeHouse into the huge number of parliamentary questions about autism which never receive any answer rightly illustrates the huge gaps in our knowledge. Similarly, the information deficit extends to the lack of understanding among teachers, as we have heard, social workers and even medical experts.

The other point on which I should appreciate the Minister’s comments is support for the transition from childhood to adulthood. The support that young people receive as they leave school is critical to their future success, and for many young people with autism, it is a particularly stressful time as they leave behind the support that they have had through school and move on to a new life. For youngsters with autism, even small changes to their routine can be very difficult, so professionals and services need to plan ahead effectively and consult young people and their families to ensure that the young person is able to move on successfully to opportunities that are appropriate to them. Far too often, it does not happen. Only 15 per cent. of adults with autism are in full-time employment, while more than 40 per cent. still live at home with their parents. Much good work is done during school years, but it can all too easily be undone if young people with autism are abandoned by the system when they reach adulthood.

In my constituency, there is a young man with autism called Calum Reavley, whom I recently visited. His parents, grandparents, family and friends, and many more people often work day and night to give Calum the good start in life that he deserves. Life is a constant battle for education, for respite care and for everything else. Surely, we have the resources to provide the education, help and support that people such as Calum deserve. As his family watch billions of pounds being pumped in to save the financial sector today, they will be asking, “Why is it so hard, and why is there so little help available for us?” I look forward to the Minister’s answer.

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This website was established while I was a Member of Parliament. The site content is being kept online as a source of information, but all forms / email have been disabled.