Autism Diagnosis Waiting Times

Barry Sheerman Excerpts

Tuesday 8th March 2016 Westminster Hall

[Jo Cox (Batley and Spen) (Lab)]

I beg to move,

That this House has considered autism diagnosis waiting times.

It is a pleasure to serve under your chairmanship, Sir Roger, and to lead this important debate.

As hon. Members will know, autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It is a spectrum condition, which affects different people in different ways. Some people with autism are able to lead a substantially or even completely independent life, while others may need a lifetime of specialist, complex support.

Diagnosis, which is what we are here to discuss, is a critical milestone for people on the spectrum. It helps individuals to take control of their lives and can unlock access to essential support and services. Diagnosis is important not only for those who are on the spectrum. It can be just as important for their parents, friends and loved ones, enabling them to better understand their child, friend or partner.

[Mr Barry Sheerman (Huddersfield) (Lab/Co-op)]

My hon. Friend may know that I have an autistic child in my family and that I chair the newly formed commission on autism. Would she agree that it is absolutely about the family support that would come from early diagnosis? At the moment, so few people get it.

[Jo Cox]

Absolutely. I bow to my hon. Friend’s experience, expertise and doughty campaigning on this issue, and I could not agree with him more. Tragically, as we know, many thousands of people up and down the country, including children, wait far too long for a diagnosis. For children, on average the current wait is now more than three and a half years.

--- Later in debate ---

[Jo Cox]

I thank the hon. Lady for that helpful intervention. I agree with her, and let us hope that the Minister addresses that point in his comments.

To return to the example of a little girl who faces a choice. Without a diagnosis she will be forced to accept a place in a mainstream primary school that will not be able to meet her needs. With a diagnosis, however, she would go to a primary autism resource using the specialised teaching methods she knows and trusts. She would be able to continue her education and in turn increase her life chances.

Many parents tell the National Autistic Society that delays in getting diagnoses have also led to the development of serious mental health problems, both for the individual and for the family. For example, having presented himself to GPs for 20 years, Chris was diagnosed with Asperger’s syndrome in 2007 after finally deciding to go private. Without a diagnosis, appropriate support or an understanding of his needs, he experienced mental health conditions for most of his life, including depression, anxiety, obsessive-compulsive disorder and mild Tourette’s. He was hospitalised when he was 15 and later became suicidal when his needs were not met.

We now know the value and importance of early and fast diagnosis, yet our system continues to fail so many children and adults. Members present will have heard stories from their constituents or family members and will have no doubt been deeply affected by them, as I have. One has to meet only a handful of parents to realise the unbelievable pressures that the waiting times put them under.

I could tell a number of stories from my own constituency—members of some of the families affected are here today—but I want to tell the story of a young man from Batley. He is one of the lucky ones: he now has his diagnosis of Asperger’s syndrome. His mum wrote to me and told me what a blessing the diagnosis has been. It did not just provide access to support and services, but it helped everyone, including him, to understand why he felt and behaved the way he did. He said he wished he had been diagnosed earlier because:

“I always knew I was different, now I know why.”

He is one of the lucky ones, because his parents had the ability to pay for a private diagnosis. They raised £2,500 to fast-track the process, but they should not have had to do that. What about the great many of my constituents who do not have the means to afford a private diagnosis? Another of my constituents, who is also from Batley, has had to give up his job to accompany his son to school every day. Without a diagnosis, the school is not able to fund the additional staff it needs to take care of his complex needs. It is a problem not only in my constituency, but throughout the country.

[Mr Sheerman]

My hon. Friend is being generous in giving way. Is it not also disappointing for constituents and for people we know in the autism field—some very experienced people have intervened on her on that count—when someone goes into a health diagnosis and the health people say, “We can give you the diagnosis, but you will not get any help because the local authority does not have the capacity or the trained people to provide that help”?

[Jo Cox]

Absolutely. My hon. Friend again raises a very valid point. We are talking specifically about diagnosis delays, but once someone has a diagnosis, that opens up a whole range of issues that I hope the Minister will address.