Autism Diagnosis Waiting Times

Lisa Cameron Excerpts

Tuesday 8th March 2016 Westminster Hall

[Jo Cox]

I agree entirely. Let us hope that we have an answer on exactly that point from the Minister. I applaud and bow to the right hon. Lady’s commitment and experience on this issue.

While the average waiting time for children is more than three and a half years, many adults receive a diagnosis only five years after concerns first emerge and often two years after seeking professional help. Some 61% of people who responded to a National Autistic Society survey said that they felt relieved to get a diagnosis when it finally came, and more than half—58%—said that it led to their getting new or additional much-needed support. It is of particular concern that children are having to wait so long for a diagnosis. Not only does that place tremendous strain on their whole family, but it means that many children do not receive the early intervention that could have a big impact on their formative years. Indeed, in many cases, children are being locked out of the services available to them, and that support can be life-changing.

Snowflakes is a nursery for children with an autism diagnosis or who are awaiting an autism diagnostic observation schedule assessment. The nursery is run by my sister-in-law, Stacia. One of its children was lucky and got an early diagnosis aged three. He joined Snowflakes and the team worked with him and his family for two years. The dedicated staff managed to help him into a mainstream primary school with support, and he is still in that school and is thriving. Another child came to Snowflakes because her mainstream nursery was unable to cope with her challenging behaviour. She is now on an 18-month waiting list for a diagnosis, but is due to start primary school in just six months’ time. She is making good progress within the specialised setting and is now a role model for other children. Her parents want her to move on to a primary autism resource, but to get a place she needs a diagnosis.

[Dr Lisa Cameron (East Kilbride, Strathaven and Lesmahagow) (SNP)]

I thank the hon. Lady for securing this important debate, which I feel strongly about. In my constituency, I have had contact with families experiencing exactly the issues that she is raising. Is it not important that more clinicians are trained to diagnose and that teachers are able to pick up very early signs of autistic spectrum disorder?

[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.