Autism Diagnosis

Mike Amesbury Excerpts

Wednesday 13th September 2017 Westminster Hall

[Helen Whately (Faversham and Mid Kent) (Con)]

I congratulate the hon. Member for Enfield, Southgate (Bambos Charalambous) on securing the debate, and I am pleased to see so many people in the Chamber; it reflects the level of concern about the waiting times for autism diagnosis.

First, I welcome the efforts that clearly are being taken by Governments and local authorities to provide more support for children and adults with autism. Just last week, the doubling of the number of health visitors since 2010 was brought to my attention in my constituency. That has had benefits in supporting young families and, in particular, parents, when their child is not behaving as they expected. There are good things going on, but I want to talk briefly about the gap between the NICE guidelines on waiting times and what appears to be happening on the ground.

When I talk to parents in my constituency, it is clear that their experience does not involve a three-month waiting time. I have several accounts from parents who have experienced much longer waits. For example, one set of parents raised concerns when their child was four. That child is now 10 and they still do not have a diagnosis, despite many professionals seeing the child and indicating that they think that they are on the autism spectrum. In another family, the mother raised concerns when her son was 15 months old and the child was nearly four before she got a diagnosis. During that period, not only did the child regress and go, for instance, from talking to not talking and communicating to not communicating, but a lot of concern was raised about the mother’s mental health. Rather than her being given support to look after the child, it was all about whether she had mental health problems. She went for all the support that she could get, but it very much felt like the focus was not on supporting the child. I have a whole raft of such stories.

[Mike Amesbury (Weaver Vale) (Lab)]

Will the hon. Lady give way?

[Helen Whately]

We are very short of time, so I had best press on.

I draw on examples in part because we do not have regional data on waiting times. I asked the local clinical commissioning group and was told that it does not have easy access to those data, so I do not know what the waiting times are—I just have stories that make it clear that they are extraordinarily long. My first request is therefore for more transparency about the data, as well as addressing the problem of parents saying that they are waiting to wait—that is, that they are being passed from one list to another. Let us have transparency. Let us have people who are waiting getting seen sooner and then, following the diagnosis, let us have really good support services, because the story is very patchy in that area, too.

--- Later in debate ---

[Jo Platt (Leigh) (Lab/Co-op)]

I thank my hon. Friend the Member for Enfield, Southgate (Bambos Charalambous) for bringing this important debate here today. Like many others, I have many constituents who have contacted me and highlighted the effect that delays in diagnosis can have. The process is often a long and confusing experience for the child and a source of great stress for parents, carers and family members. My work with children and young people during my previous role within the local authority has given me a really good understanding and great insight into the huge gaps that children and families face. Delays in obtaining diagnosis vary widely from child to child and from area to area.

As others have done, I will read out a statement from a constituent; she has two autistic children. Debates such as this are for hearing directly from those affected. This is Katy, who said:

“My first child had a reasonably short period of assessment lasting 12 months, but my youngest son is just beginning the process and we have been advised that it could take up to three years. As he is nearly three, he would be expected to go onto a school place and as such could potentially struggle and fall behind.”

They will not get access to an education, health and care plan, and

“he will not be accepted into a SEN school without this diagnosis.”

How is it right for her and her son to go through the agony of not receiving appropriate care due to the assessment process? That process has a huge impact on children being able to access the schooling environment and support they need.

[Mike Amesbury]

I want to illustrate this. A constituent has a son, Sam, who is seven years of age. They have been waiting a considerable length of time—months and months—and no longer know what to do or how long to wait. They came to me in frustration. With no diagnosis, there is no EHCP, which means no provision, as hon. Members from across the Chamber have said. They must battle on and on.

[Jo Platt]

That is exactly the point that we have all been raising. As mentioned by many here, people have gone through their entire lives without being diagnosed. In some cases, that does not present a real issue, but for others it presents decades of being misunderstood and misdiagnosed with other conditions.

Dawn is another woman in my constituency. She had spent all of her life being treated differently and feeling ill at ease with all that went on around her. This year, she was diagnosed with autism at the age of 46. She said to me that now that she understands her condition, the world makes sense. Dawn and many like her are determined to make a difference. She is exploring ways in which she can help and support other adults in the same situation and to advocate for better understanding of the condition. I applaud Wigan Council, because it understands the gaps and wants to bridge communities, businesses and other public services to create that better understanding for people affected.

I urge the Minister to ensure that the process of diagnosing and supporting people with autism is consistent across the country, with that process informing and supporting all public services and the wider community, and that the latest recommendations and resources are allocated at the earliest opportunity to support the individual’s needs and promote better outcomes for all.