Autism Diagnosis

Tonia Antoniazzi Excerpts

Wednesday 13th September 2017 Westminster Hall

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

It is a pleasure to serve under your chairmanship, Mr Howarth. I will try not to take up too much time. I welcome the Minister to her place and look forward to hearing how she responds to the hon. Member for Enfield, Southgate (Bambos Charalambous). I add my congratulations, which I am sure will be echoed around this Chamber, to him on securing this important debate.

I am proud to be chairman of the all-party parliamentary group on autism, which has a wide membership across all parties. I like to think that this is one subject about which we do not need to be party political; we can all work together to try to secure better outcomes for people with autism and their families. I hope that the hon. Member for Enfield, Southgate and other new Members will join the APPG. Forgive me for the advertisement, but if they ring my office we will put them on the list and let them know what we are up to.

May I also welcome a very unusual appearance in this Chamber? I see that the Minister for Disabled People, Health and Work, my hon. Friend the Member for Portsmouth North (Penny Mordaunt), is here. We do not often see a Minister from another Department who is not called upon to speak coming in to listen to a debate. I am encouraged by that and I thank her for being here, because it shows how seriously we take this matter.

If I remember correctly, the last time we were in this Chamber to debate autism was in a debate secured by the late Jo Cox. We all acknowledge that she was a great Member of Parliament, and she had also begun to champion autism in a major way. We are grateful for her contribution, which will long be remembered in this House. It is worth looking back at that debate to see how far we have come since then and what measures are being put in place to bring down diagnosis waiting times, because all of us, including the Government, were in agreement that people are waiting too long for diagnosis—that is a given.

Last year I had the honour of chairing a well-attended APPG public meeting on this issue. Those who were there might remember hearing from Melanie, whose son Sam had waited nine years to receive a formal diagnosis. Concerns were first raised only two weeks after he started school. She was passed from agency to agency until finally, at age 14, her son was given a formal diagnosis.

Melanie told us how frustrated she was at the number of missed opportunities to pick up on Sam’s basically hidden needs. It meant that she could not put in place vital support to help him when he was young, which she believes has had a significant impact on his development and, as one of the interventions alluded to, on the subsequent mental health problems he faced. It is sad to say, but she now regrets having pushed her son to fit in and socialise, because that caused him an enormous amount of stress. Although a nine-year wait is an extreme example, the stories that our constituents tell us clearly show that we need to do more to reduce waiting times.

Let me touch once more on the importance of ensuring that we properly record diagnosis waiting times and break down the data by local area. The National Autistic Society has asked that diagnosis waiting times for children and adults become part of the mental health services data set and that measures are developed so that waiting times for diagnosis become part of the NHS’s accountability frameworks. I think that we could all agree on that. If those recommendations were taken forward in full, that would allow Members here to assess how well their local area was doing and to be assured that diagnosis waiting times were being prioritised locally, while supporting constituents to hold their local services to account. After all, that is what we are here for.

The Government have indicated previously that they are working towards a better methodology for recording autism diagnosis, but it would help if the Minister could put on the record the work that the Government are doing in this area and when Members can expect to start seeing the data, which will help us all.

I also want to highlight the data that should currently exist for diagnosis waiting times for adults. The Under-Secretary of State for Health, my hon. Friend the Member for Thurrock (Jackie Doyle-Price), is no doubt aware that a report on the results of the autism self-assessment framework was published in June. The self-assessment framework is a survey that is sent regularly to top-tier local councils in England to ask them to report on local implementation of the Autism Act 2009, which I introduced. Although the overview of the results across England was published in June, the Government still have not published the local area breakdowns on which it was based. That omission has meant that Members here are unable to scrutinise how their own local areas are performing. For example, we are aware that one local authority is reporting a 125-week waiting time. I am sure that the Members who represent that currently unnamed local area will want to know that information as soon as possible—I certainly would.

[Tonia Antoniazzi (Gower) (Lab)]

I thank the right hon. Lady for stating that this issue is not party political. Although the UK Government have introduced an Autism Act, it does not include children and has no funding attached to it, whereas the Welsh Government are investing millions in an innovative national integrated service. As well as investing millions in neurodevelopmental assessment services for children, they have introduced a 26-week waiting time target from referral to first appointment. Does the right hon. Lady think that patients in England would benefit from the Government looking at good practice in the devolved nations to improve services in England?

[Mrs Gillan]

As a former Secretary of State for Wales, I welcome all the initiatives taken in Wales on this matter. An earlier intervention indicated that Wales had only recently introduced an autism strategy, but in fact Wales introduced an autism strategy back in 2008, before the Bill was introduced, so they are to be congratulated on taking that original initiative—I am not proud; I will learn from any quarter where we can improve our services.

My memory of introducing the Autism Bill is not a pleasant one. The Government of the day opposed it, but we defeated them on Second Reading of a private Member’s Bill on a Friday. That was why they decided to allow their draftsmen to work with me to produce a piece of legislation that they would accept. I decided that it was better to get that on to the statute book at the time, rather than to try to broaden the scope of the legislation. However, the hon. Member for Gower (Tonia Antoniazzi) is right. I was disappointed, but that is what I was able to get through at the time, and I felt that it was important.

Can the Minister commit to looking into the local area waiting times and publishing the breakdown as soon as possible? It is worth noting that concerns have been expressed about the waiting times data provided by the self-assessment framework. Some have described it as local areas marking their own homework, with little oversight, which does none of us any good. Including data on autism diagnosis in the mental health services data set, as I have outlined already, would help make sure that data are recorded properly and accurately.

Before I sit down, I want to touch quickly on the issue of mental health and autism, which has already been alluded to in interventions. Autism is not a mental health condition in itself, but research indicates that as many as 70% of autistic people may develop mental health problems. The lack of a timely diagnosis contributes to that and can mean that autistic children and adults develop mental health problems. A diagnosis can help to unlock the right types of support for autistic people and their families, which can prevent the development of problems further down the line.

In addition, autistic people diagnosed as adults frequently report how transformational that diagnosis is in helping explain years—in some cases, decades—of feeling different. More than 60% of respondents to a National Autistic Society survey describe getting their diagnosis as a great relief. In some of the most serious cases, autistic adults have reported that prior to their diagnosis they have not only experienced serious mental health problems, but even had suicidal thoughts, as the hon. Member for Blaydon (Liz Twist) mentioned earlier.

Research from Sweden suggests that suicide rates are significantly higher among autistic people than the rest of the general public. The Swedish study, which I recommend that Members read, showed that autistic people who did not have a learning disability were nine times more likely to commit suicide than the general population. It is worth remembering that the Swedish healthcare system is different from ours. However, given the seriousness of those findings, it is vital to find out whether that also applies to the UK and, if so, to understand the reasons for that. I hope that the Minister will commit to investigating issues of mortality and autism, and highlight what proposals the Government might have more widely to ensure that autistic people’s mental health problems are better dealt with by the NHS.

I welcome this opportunity to get an update from the Government on how we are progressing in this vital area. The stories of the time that it has taken for families to get the right support in place are truly heartbreaking. From looking at the latest statistics, we see that every Member of this House will have at least 1,000 constituents who are affected by autism, so this is not just a problem for one; it is a problem for all.

I have an aim. I feel passionately that we should ensure that every single public-facing person employed by the Government or the state—whether a teacher, a nurse or a fireman—at some stage during their training has a module on autism, so that the wider state can really understand the needs of people and their families, and respond accordingly. I look forward to continuing to work with the Government not only on how we can get the waiting times down, but on how we can broaden the quality of the services that we offer to people with autism and their families. Once again, I congratulate the hon. Member for Enfield, Southgate on initiating this debate.