Autism

Lord Touhig Excerpts

Tuesday 22nd March 2016 Grand Committee

[Lord Touhig (Lab)]

My Lords, I am grateful to someone whom I am proud to call my noble friend—the noble Baroness, Lady Browning—for securing this debate. She is a formidable, constant and doughty champion for people and families with autism.

When a couple whom I have known for many years told me that they suspected that their child was autistic, I advised them to keep a diary along the lines suggested by the National Autistic Society, of which, like the noble Baroness, Lady Browning, I am a vice-president; I must declare my interest. They did this and took the diary to their GP, who tossed it aside and said, “I have seen these sorts of things before”. I became rather angry, and when I discovered that the senior partner in the practice was someone I knew, I rang him up and, quite bluntly, said, “Pull your bloody finger out and get this child a diagnosis”. That should not have been necessary but in so many cases, the hardest part about living with autism is getting a diagnosis in the first place.

The National Autistic Society’s research indicates that adults have to wait more than two years for a diagnosis and children are waiting three years, even though the NICE guidelines clearly state that the time between referral from a GP and diagnostic appointment should be three months. A diagnosis begins to unlock the door to getting support and help and to gaining a better understanding of an autistic person’s needs, yet there is often a barrier put up by the National Health Service and those working in the service. I am sure that it is not meant that way, and that those working in the health service would be horrified to think that it is, but too many in the NHS erect a barrier —for whatever reason—prolonging the time that it takes to get a diagnosis. That barrier must come down. The diagnosis is the first step for autistic people, enabling them to access the right support and begin a better quality of life. A survey carried out by the National Autistic Society revealed that 61% of people who responded felt relieved to get a diagnosis, while 58% said that it led to them getting new or more support.

For many with autism, it is the first chance to get an insight into why they feel and act differently. Naoki Higashida, a young Japanese autistic boy who wrote The Reason I Jump—a book which I have quoted a number times—posed a number of questions about people with autism. He asked, “Why do people with autism talk so loudly and weirdly? Why do people with autism do things they shouldn’t, even when they are told not to do them a million times? Why do people with autism take ages to answer questions?” People with autism ask these questions of themselves, often not getting an answer or an understanding. Not until they have a diagnosis does support and understanding of their needs follow.

The families of people with autism often say that delays in getting diagnoses led to the development of serious mental health problems, both for the individual and for their family. It is therefore important that people with suspected autism are able to access a timely diagnosis wherever they live in the country. When, in February 2015, I asked a series of Written Questions about autism diagnosis, the then Minister, the noble Earl, Lord Howe, replied that data on:

“The number of children diagnosed with autism is not collected centrally”.

However, if we do not know the extent of the need, how can we really respond to it properly? The best thing would be to create an autism register to be registered with every GP. The National Autistic Society, in its autism diagnosis crisis campaign, is calling on the Government and the NHS in England to take this action; already, 12,000 people have signed a letter in support. Surely, the NHS should collect, publish and monitor key information about how long people are waiting for a diagnosis and how many people’s autism is known to their GPs.

The NHS should ensure that waiting time standards on mental health, currently in development, reflect national guidance and that no one waits longer than three months between referral and being seen for diagnosis. The Government must share in this commitment, ensuring that the NHS in England meets its aims. Timely access to an autism diagnosis should be written into the Government’s mandate to the NHS in England.

I am conscious that some people might want to speak in the gap, so I will cut my remarks accordingly. I will end by sharing with the Grand Committee a case study that expresses more eloquently than I can how an early diagnosis might have made a huge difference to the life of one young person. The names are changed to protect the families’ anonymity. Jane is 50 and Michael, her husband, is 51. They have a son, Dan, who is 15 and they live in the south of England. It took Dan’s parents almost six years to get a diagnosis from the point where they started seeking an autism assessment, although they had started looking for answers two years before that. During those years, his parents were repeatedly told by professionals that he was not on the spectrum. The diagnosis happened only when they went private to get a diagnosis. Dan was diagnosed with autism only last year, six years after his parents raised the issue of autism with professionals and eight years since they first sought help. The delay had a huge impact on his health, his mental health, his education and his family. His mother wrote that:

“With the help of the firm diagnosis, I was able to fight successfully to get funding for Dan to go to an independent school which specialises in children with various difficulties, including autism. The school understands anxiety and has small classes, so Dan can learn without stress. The impact on Dan’s education of not receiving an earlier diagnosis cannot be overestimated: he lost four years of his school education and is having to repeat a year so that he can take his GCSEs. He is a bright boy and loves learning, so he is delighted to be back at school again. The delays also had a huge impact on Dan’s mental health, as well as our family’s … What makes me really angry is that I know there are plenty of children who still don’t have the help they need”,

in order to fulfil their life potential. We have an opportunity in Parliament, as politicians and as Ministers, to do something about this. We have an opportunity to make a difference. That is why we are here. I hope that the Government are listening; I am sure that they are, but we really have to keep pressing for some improvements.