Panel at the Autism Act inquiry session

Jo Minchin is autistic and works as an expert by experience for a Clinical Commissioning Group in the NHS on Transforming Care and as the Vice-Chair of our All Party Parliamentary Group on Autism (APPGA) Advisory Group. In this blog, Jo reflects on being a panellist at our Autism Act inquiry session on Health Mental Health.

 

With my experience working with the health service, I’ve seen a lot of the issues we were talking about first-hand. As a panellist, it was not my role to say very much, it was to use my knowledge to formulate the right kinds of questions to ask. It was interesting to hear what other people think of autistic people’s experiences of health and mental health, and what they think needs to be done to make things better.

Introduction to the session

The APPGA wanted to find out what had changed since the publication of the last autism strategy in 2014, so we are aware of all the improvements autistic people need. We really need to push as hard as possible to make things better for all autistic people, because we still have a long way to go. In the session, we talked to witnesses from organisations like the NHS and local government about diagnosis, experiences of primary care, and support from secondary mental health services. We found out a lot about what isn’t working for autistic people.

The Autism Act was a really important moment for autistic people, their families, and carers because it acknowledged that autism needs to be recognised separately from learning disabilities and mental health issues.

It didn’t give us everything we needed but it pushed for important changes in areas like diagnosis, and realising that autism needs to be taken seriously in its own right.

Ten years ago, there were only about ten diagnostic teams across the country – and now almost every area of the country has a diagnostic service. That’s a huge change in ten years, even though, as we found out in the inquiry session, it still feels like a postcode lottery at times.

Health inequalities

The session was in two parts. The first part looked at health inequalities autistic people face, including access to mainstream services and diagnosis, poor prognosis, common comorbidities, and reduced life expectancy. These are all things I’m really concerned about, but still seem to be overlooked and only partially recorded in this country. The second part of the session was more focused on the Transforming Care programme and mental health services.

Some of the biggest themes highlighted by witnesses were the need to improve data in healthcare, diagnostic rates and the type of support people can access after diagnosis. On the mental health side of things, we talked about the need to bring budgets for health and care together so different departments don’t argue about who pays for someone’s support, which we know happens a lot.

Mental health

We also touched on the Mental Health Act, and the definition of autism as a ’mental disorder’ within it. It ends up with so many autistic people being sectioned, or retained, in mental health hospitals even though they don’t have a treatable mental health condition. Many autistic people of course have an accompanying mental health condition, but it’s not one and the same. Without properly understanding their autistic patients, it can be very difficult for health professionals to make decisions about autistic people who are in distress, and diagnostic overshadowing is a problem.

We also spoke about the high number of autistic people who have mental health problems, often due to having to struggle to fit in to a society that does not accommodate us. We may be more aware of this because we are talking about it as a society more generally, but there are some other reasons why autistic people report higher rates of poor mental health. Autistic people are much more likely to be socially isolated than other members of the population, and this increases the risk of having mental health problems, such as depression or anxiety.

We also talked about the reasonable adjustments autistic people need to access health services, and what happens if services aren’t adapted for autistic people. Too often, we lose faith in our health providers, and this stops us from reaching out. We often end up getting to crisis point before we get the support we need, if we get it at all.

Conclusion

We were able to gather so much useful information and views on what needs to change during the inquiry session. We’ve actually done all six of the inquiry sessions now. Our next step is writing the report, which will be based on these sessions and the results of the survey we conducted earlier this year, so we can present this to the Government in September and make sure they listen to the recommendations as they review the autism strategy in the autumn. It’s really important that politicians understand why we need to get support, for both autistic children, adults and family members, right - and we’ll be keeping you up-to-date on what we do next.

Further information

  • For more information about the Autism Act, read this blog on our website.
  • For information about health and care – and how to access it, read guidance.