9. Short Debate: Pathways from referrals to diagnosis and beyond: the challenges of living with autism and other neurodivergent conditions

Part of the debate – in the Senedd at 5:35 pm on 11 May 2022.

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Photo of Hefin David Hefin David Labour 5:35, 11 May 2022

My issue, and the problem that I've seen so often, is that it is too much about seeking a diagnosis and then dealing with the symptoms, rather than the first bit, which is looking at what is presenting—what are the presenting behaviours, what are those behaviours we're seeing, how can we support and treat them. A diagnosis is almost—not quite, but almost—secondary to that. We shouldn't be rushing to diagnosis. In fact, in the cases of ADHD, some people with ADHD do not want an autism diagnosis, because they do not consider themselves to be autistic; they have ADHD. If we overdiagnose, they may seek an autism diagnosis in order to access services, and that wouldn't be right. So, with the greatest respect—and I've got no party political difference—I just didn't support the autism Bill for those reasons. I think the National Autistic Society got that wrong, to be honest with you. But, that said, I think that is now water under the bridge and we've moved on from there.

One thing I want to say about many of the cases that are coming across my desk and people I'm meeting at the surgeries, people I'm meeting at Sparrows, is schools, and how their children experience schools. Exclusion is a huge thing. I was sent by Steffan Davies, who's a PhD student at Swansea University, this report that many of you may have been sent, which is 'The Education of Autistic Pupils in Wales'. It's well worth a read because it's the preliminary findings of his PhD study, and in it there's a stark statistic that I think we need to be aware of, and that is that 76 per cent of autistic children and young people in the survey told them they'd been bullied in school. And not only that, 20 per cent of parents told the survey that their child had been temporarily externally excluded. And half of the parents of boys who had experienced fixed-term exclusions say that schools had given the reason that they were unable to manage their child's behaviours, with disruptive behaviour being the second most common reason.

This is one of the problems that children are facing with autism. They're being excluded from school because their behaviours are being addressed, and not their needs. It has to be the need. I've had the pleasure of working with Caerphilly's inclusion lead, Sarah Ellis—I met with her today, just this afternoon—and Claire Hudson, whose son Jack is in this position. She said that too often, what schools tend to do is look at disruptive behaviour and take action against the behaviour. Instead, there's always a reason for the behaviour. What is that reason? Those are the questions that need to be answered. Support the need, not the behaviour. 

That brings me to ADHD and Tourette's, two conditions that are associated with autism. My daughter uses verbal stimming. It sounds like verbal tics. Sometimes, you get that with autism. Sometimes, you don't have autism and you have Tourette's and you have ADHD entirely separately, and this is where people may fall through the gaps a little bit. I've spoken today to Helen Reeves-Graham, who has reported her own child with Tourette's, and she said that there do not seem to be pathways for those children who aren't presenting with ASD as a comorbidity. That is a real challenge, I think, for the sector to meet that, and there's a report on the BBC website about that. While I mention Tourette's, I also want to mention Lucy-Marie, who has written a book—she's 12 years old—for children with Tourette's explaining some of the challenges that she faces, for children to understand that. There's also a piece on the BBC website with a video of her talking. She's one of our Sparrows group children. We call them 'fledglings' and she's involved in that group.

So, what I am asking for? Well, there are some key recommendations that I'd like to see. First of all, a key point is addressing needs, not behaviours, and reducing the number of children affected by ASD, Tourette's and ADHD in school being excluded—reducing that number. Diagnosis needs to be multidisciplinary and not in isolation, therefore we need people working together cross-disciplinary, not just for autism, but for ADHD, and increasing understanding of Tourette's as well. And we need to increase understanding and awareness of the associated co-occurrence and risk between neurodevelopment conditions and mental health problems. That needs to transcend policy and practice. We know that issues waiting for CAMHS is part of that, and I know we've had conversations about that too. Remember the 'Mind over matter' report; it's all wrapped up in that—the work that Lynne Neagle did and Julie Morgan is doing.

At that point, I'm going to give time to Laura Anne Jones and Mark Isherwood, so I'm going to stop there at this point and say that this isn't the end of the debate. I think we're going to have a further debate on Tourette's that the Petitions Committee is bringing forward. I've only just had a chance to scratch the surface today, but I hope to bring more to that debate as well.