Autism and ADHD Assessments

Kerry McCarthy Excerpts

Monday 6th February 2023 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

It is always a pleasure to see you in the Chair, Ms Fovargue.

I congratulate the Petitions Committee on not just scheduling the debate, but the surveys and outreach work it has done, which has come a long way since the Committee was first set up. What it does is really valued. I also think that the hon. Member for Carshalton and Wallington (Elliot Colburn) once again did justice to the topic that he presented.

Over recent years, awareness of neurodevelopmental conditions such as ADHD and autism has improved massively. I am slightly worried that we are seeing a bit of push-back, with people saying it is fashionable to have ADHD because a number of celebrities have come out and said that they have it, and almost casting doubt on the diagnosis behind that. We have heard people’s stories about how much they have gone through, wondering what is wrong with them or why they do not fit into society, and about the obstacles that they had to get through to get a diagnosis, so no one should say that this is something people do just on a whim, because they want to look cool. It is unfortunate that people say that.

Of the constituents who have come to me about this, a lot were diagnosed as adults. They had years of being misunderstood and having their abilities underestimated. A lot of them started out as very bright kids at school, but had something go wrong at secondary school, just because it was not designed to fit how they learned or how they conducted themselves in the classroom. They were often misdiagnosed as suffering from anxiety or depression, for example.

One of the things that struck me when constituents told me how they got their diagnosis is the role of GPs. It was sometimes very perceptive GPs who spotted that it might be ADHD after other people had not, and that was the gateway to a life-changing diagnosis. As well as talking about what mental health services can do, and about SEND and EHCPs, we need to ensure that GPs have the time to spend with their patients. They should be able to see their patients face to face if that is what is needed so they can play that crucial role.

There is wider understanding about children, but that does not always translate into practical knowledge of how to manage their needs, particularly if they have complex backgrounds. The mother of one of the children in my family was told that her child did not need another diagnosis because she already had physical disabilities linked to learning disabilities—it was like she had enough wrong with her, so she did not need something else. It was only when it reached crisis point that it was accepted that a physical disability is not treated in the same way as autism. Parents who come to us because they are struggling to get EHCPs really are at their wits’ end because of all the obstacles and the number of times they get pushed back by the system, particularly when they are suspected of being over-anxious parents.

In Bristol, we are seeing some progress in EHCPs. The number of children waiting for autism diagnostic assessments has gone down fractionally, and the health service is trying to recruit extra staff to carry out the assessments. For adults, particularly when it comes to ADHD, it is still pretty bad. At the moment, the waiting lists are about 14 months for children to be assessed for ADHD and autism. For adults, it is 12 months for autism but four years for ADHD.

I met a constituent, Jacob, who goes by the name adhdfatheruk on Instagram and TikTok. He was diagnosed as a teenager and often struggled at school. Many labelled his hyperactivity as bad behaviour, and his inattentiveness was put down to laziness. He is very keen to press for greater awareness of ADHD in schools. He thinks that training teachers to recognise the signs of neurodivergence could mean that children’s needs are picked up sooner, so they might face less stigma and be mislabelled less often. I would be interested to hear what the Minister has to say about that. Obviously, she is a health Minister, but that role in schools is really important.

My constituent Laura recently appeared on ITV News to talk about her son Zac, who is eight years old and has autistic traits. He was referred by his school in December 2020 and still does not have a diagnosis. When I raised it with the local autism hub, it said it was expecting to see him by summer 2022. Well, he has still not been diagnosed.

I tabled a written question to the Minister last month, and I was told that between July 2021 and June 2022, more than 95,000 children were in a position similar to Zac’s, with an open referral for suspected autism. That could be more than 95,000 children in limbo, up and down the country, just like Zac’s family. As I understand it, the Department of Health and Social Care does not collect data on ADHD assessments, so it is quite possible that many more thousands of parents of children with ADHD may be waiting.

I know many other Members want to speak, so I will conclude. We have heard from other Members how much more likely people with ADHD are to attempt suicide. One study showed that 35% of autistic people have at some point planned to take their own life.

It was very interesting to hear what the right hon. and learned Member for South Swindon (Sir Robert Buckland) said about assessments in the prison system. We know that about a quarter of the prison population meets the threshold for an ADHD diagnosis, and up to 19% may be autistic. Particularly at young offender institutions, we need to crack that if we are to stop that lifelong criminal offending.

Finally, we are still waiting to hear about the SEND Green Paper and the improvement plan. The consultation document was co-authored by the Department of Health and the Department for Education, but there was not much in it about the overlap with CAMHS. My final plea is that we need to ensure that, particularly in the case of children, we look at this as a SEND issue and are getting the EHCPs, but that, where mental health support is needed, the two organisations are talking to each other.