Autism Diagnosis

Baroness Keeley Excerpts

Wednesday 13th September 2017 Westminster Hall

[Barbara Keeley (Worsley and Eccles South) (Lab)]

It is an honour to speak with you in the Chair, Mr Howarth. I very much congratulate my hon. Friend the Member for Enfield, Southgate (Bambos Charalambous) on securing the debate. It is an important one because, as we have heard, diagnosis is the vital first step towards getting support for people with autism.

For children with autism, and their parents, getting a diagnosis is the first hurdle that they need to get over, to secure the support and education to which they are entitled. As my hon. Friend the Member for Enfield, Southgate mentioned, the NICE quality standard on autism recommends that people should wait no longer than three months once they are referred for their first diagnostic appointment. It is clear that people have to wait too long for a diagnosis of autism and that the waiting time can be gamed by delaying later appointments. Waiting to wait is not acceptable.

We heard that research has shown that waits can be two years for adults and three and a half years for children, but we have also heard of examples where things have taken much longer. We touched earlier on the Public Health England survey and the fact that in one local authority it is admitted that there are waits of 125 weeks. Hon. Members have spoken powerfully about long waiting times and their constituents’ experiences—and their own, in the case of my hon. Friend the Member for Stalybridge and Hyde (Jonathan Reynolds).

I was contacted by one of my hon. Friends who could not take part in the debate, and want briefly to refer to the experience of one of her constituents. When her son was 18 months old, he suddenly stopped talking. That was raised with the health visitor at the child’s two-year review. The health visitor almost did not make a referral to a speech and language therapist, saying that the criterion for referral was that a child could say fewer than 10 words. At that time, the little boy could say only one word: “No”. It took a nine-month wait to get a first appointment with a speech and language therapist. At the second appointment, six months later, she said she would refer the child to a paediatrician. In the end, it took almost two years to get a diagnosis of autistic spectrum disorder from the paediatrician and the speech and language therapist working together.

Since then, the child has been discharged from speech and language therapy, despite the fact that he is still not speaking. His parents have had to get therapy for him privately, paid for with his disability living allowance money. The child spent half his young lifetime—from age two to age four—without the support that he needed to help his development. The mother says she felt

“let down by the system”,

but also that their family was one of the lucky ones, because, as we have heard, other parents had to wait longer to get a diagnosis. The issue for her was

“the lack of availability of professionals…had we seen professionals when appointments were due I think it would halve the time to get a diagnosis”.

Delays in diagnosis can hinder the implementation of effective support and intervention strategies, but they can also—understandably—lead to parents losing confidence in healthcare professionals, particularly if they feel that appointments and waiting times are being gamed in the ways we have heard about. By contrast, surveys have shown that a positive diagnostic experience is associated with lower levels of stress and more effective coping strategies, which is what we are talking about giving to families, if waiting times for diagnosis can be cut. For adults with autism, a diagnosis can end years of feeling misunderstood and isolated. We have heard about an increased risk of suicide.

A number of Members raised the point that autism diagnosis waiting times are not currently collected as part of the mental health services data set. I understand that the National Autistic Society has worked with the Government on proposals to collect those data. Will the Minister confirm to the House today that the Government plan to commit to the routine recording of diagnosis waiting times from April 2018 and, importantly, tell us what plans they have to speed up the diagnosis process? NHS England does not currently collect data on the number of diagnoses or who is being diagnosed with autism. That makes it difficult to determine where there are gaps in diagnosis. The National Autistic Society says that between 75% and 80% of people who use their adult services are male. However, as my hon. Friend the Member for Enfield, Southgate said, there is concern that there is under-diagnosis of women and girls, who are not getting the support they need.

Likewise, the first generation of people diagnosed with autism are now reaching middle age. That means there is a generation of people for whom autism was not a diagnosable condition during their youth. There could be significant gaps in autism diagnosis among older people. We heard in the debate of a lady diagnosed only in her 40s, and it is important that our focus should not always be on children. I find it heart-rending to think about cases such as the one I outlined, but it can also be difficult for people get a diagnosis when they are older. NICE recently recommended the creation of an autism register so that we can identify areas where autism may be under-diagnosed. Does the Minister agree that such a register might help more autistic people get the diagnosis and the support that they are entitled to? Are there likely to be moves to create one?

An early diagnosis is important. Mental health conditions are more prevalent among people with autism than among the general population. A diagnosis can provide an understanding of why a child finds things difficult and, as in the case that I talked about, suddenly stops speaking. If there are signs of mental health issues or other problems, a diagnosis can make family and friends aware and open access to proper support. However, post-diagnosis support is not always there. A survey of parents with autistic children found that many are left with no support during and after the diagnostic process, and many are not signposted to other advice and help. That is clearly important; there is a feeling of their being warrior parents and battling parents. Let us stop their having to do that. Some are even left without a written report of their child’s diagnosis.

In the example that I outlined, the four-year-old child is still not speaking but has been discharged already from speech and language therapy services, and his parents can obtain therapy for him only privately. What plans are in place to ensure that people who receive a diagnosis have access to the services to which they are entitled, and which their children need? Let us, from now, help the warrior parents and battling parents, and all the people who need a diagnosis to move ahead with their lives.