And that takes us to item 9, the short debate, and I call on Hefin David to speak to the topic that he has chosen. Hefin David.

Diolch, Llywydd.

I'm sure Members will be leaving quietly—

I'll wait patiently.

—if they have to leave. You don't need to clear the glasses, Joyce Watson.

That was 'cheers' from Joyce Watson there. Diolch, Llywydd. I will get started if you set my timer to now, please. I'm glad to give a minute of my time to Laura Anne Jones and to Mark Isherwood, at their request, so I think then that'll leave me with 12 or so minutes, so I'll assume that's correct. I can never remember the right time.

When we stand for election, we stand to support those people in our community and those causes that we strongly believe in, and when I stood for election, autism was one of those things that I wanted to stand up for, and I never dreamt that it would be directly affecting me and my family, because I was elected in 2016, and it wasn't until 2018 that my daughter was diagnosed with autistic spectrum disorder. And as a parent, it kind of creeps up on you—certainly as a parent of a first child, with no baseline to compare it with—and it was actually my parents who said to me, on holiday, 'I think Caitlin may be autistic', because of her significant speech and language delay. And sure enough, that was the diagnosis we had.

Therefore, I'm kind of living this pathway that parents in my constituency are living, too, and far from it being selfish for me to raise this debate, what I'm trying to do is raise it on behalf of those parents that I've worked with as a result of my work as a constituency Senedd Member, and I think having the insights myself has been very important in giving me that ability to represent them effectively, because I am on the same journey. Caitlin had to wait a year for a statement, which she should not have. She was a year in mainstream when she should have been in a resource base, so I've had this experience, this frustration that people have at the delays that happen because of the multidisciplinary nature of autism and the requirements of so many people in so many parts of the public sector to agree on what is needed.

So, there are huge challenges, huge challenges, although we do have fun as well. In my community, we've got many voluntary groups. Two in particular come to mind: the Valleys Daffodils, who meet in Gilfach YMCA, just underneath my office. They meet every Saturday morning and they do a wonderful job. We've been along there. And also the Sparrows ALN group, which is active across my constituency, run by Nana Deb. Nana Deb was going to be going to Buckingham Palace to see the Queen, but unfortunately she wasn't well enough to go, and I suspect that's why the Queen won't be attending the garden party this year. We attend Cefn Fforest swimming pool every Saturday. At first, Caitlin used to say to me, 'Bye-bye, swimming. Bye-bye, swimming.' And I'm glad to say now, every Saturday morning, she says, 'Hello swimming. Hello swimming', which means she wants to go. I couldn't live without some of that support that exists in the constituency. Meeting parents who have very similar problems to mine and hearing their stories is really, really important, and how similar—although the condition presents itself in different ways, how similar the problems that parents have on that route to finding support for autism.

We've also got Trinity Fields special school, of which I'm a governor, but I think we also need another special school in the borough, such is the demand. And I'll be pushing that to the new leadership of Caerphilly County Borough Council. We're also lucky enough to have the Autistic Minds hub, which is a charity organisation, and they allow me to hold surgeries there in Caerphilly town. Once every two months, I hold a surgery there and I meet parents and adults with autism and try to help them through some of these difficult times that you find when you have either a family member, or yourself, diagnosed with autism. 

One thing I wanted to mention was the impact of lockdown. I'm really glad Lynne Neagle is here today. She was Chair of the Children, Young People and Education Committee, of which I was a member, last term, and she'll recall that, during the first lockdown, we were at our wits' end, where the narrow definition of 'vulnerable children' was such that many children with autism and other ALN conditions were finding themselves at home when they should have been in hubs, because children who were being taken to hubs were vulnerable in the sense that they might be harmed at home, not children who were vulnerable with conditions like ASD. Lynne Neagle introduced me to the Together for Children and Young People partnership, and the chair, Carol Shillabeer. And we, as a group of parents from Caerphilly, met with Carol Shillabeer. In the second and third lockdown, those children in Caerphilly went to school and were seen in hubs and onsite. Thank you, Lynne Neagle, for making that happen, and thank you to Carol Shillabeer as well for listening and making sure the Welsh Government made sure that that definition was broader. It was really, really important for people in Caerphilly. And I noticed in our Facebook group, they were saying, 'To my surprise, my son or daughter had a place this time around.' And you can't get closer to democracy and making democracy work for you than that, I don't think. 

But there remain challenges, and ongoing diagnosis and support is one of them. The Royal College of Psychiatrists have been kind enough to supply me with a paper that briefs on some of the things that are needed, and they draw attention to the children's commissioner's 2022 report, 'Making Wales a No Wrong Door Nation—how are we doing?' They highlight a passage from it:

'Waiting times for an assessment for a neurodevelopmental condition (for children with suspected Autism, ADHD and other similar conditions) are extremely long, and in the meantime children and their families can receive very little if any support....When children may have both a neurodevelopmental condition and poor mental health they often receive a very disjointed service, despite this being very common.'

The reason for that is the number of professionals that are involved in the process. I have experienced that, going from the speech and language aspect to the child psychologist aspect, to the teachers, to inclusion in the local authority. There are so many different people involved that it is difficult for a parent to map your way through that process. That is why this idea of 'no wrong door' is a good one. And the variety of manifesting symptoms are always different. For Caitlin, she doesn't have huge meltdowns because of external stimuli; if anything, she's understimulated by her environment. For other children who I see at Sparrows, they are overstimulated, and that's why you might see children wearing ear muffs or earphones, to try to drown out the external noise—although Caitlin has started wearing them, but I think it's more of a fashion statement on her part, because she's seen everybody else doing it. [Laughter.]

There's also, according to the Royal College of Psychiatrists, a shortage of child and adolescent psychiatrists, which is a key problem when it comes to supporting children and adults with autism, because that is a key part of what is needed. I can see Paul Davies in the Chamber, and we had much dialogue when he introduced his autism Bill. We came to the point where we actually disagreed on that. I just took the liberty of digging out the aims of the Bill, and one of them was to introduce a strategy for meeting the needs of children and adults with autistic spectrum disorder conditions. Primarily, it was about ensuring a clear pathway to diagnosis of autism in local areas.

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.

Autism is covered by the Equality Act 2010, requiring understanding of and adjustments for autistic service users, each of whom is a unique person with individual needs, just like everyone else. However, although autism spectrum conditions are not mental health conditions, I continue to hear daily from people with lifelong neurodevelopmental conditions, including autism, or their families, that public bodies have failed to understand individual needs and make adjustments accordingly, causing heightened anxiety and meltdown. For example, in Flintshire, children taken into care with the parents blamed had a specialist report observing that the children's behaviours were consistent with autism, but the council refuses to refer them for diagnosis. In Denbighshire, a mum wrote that her son had been waiting for an autism diagnostic test for 18 months, but as he has not been assessed, the school is unable to access support such as educational psychology and autism outreach. And a final example in Flintshire: a family whose son, who has an autism diagnosis, had a very serious meltdown, after which a council legal executive wrote, 'It would be inappropriate for the local authority to assume your son's mental health state without health diagnosis.' Until services are truly designed, delivered and monitored with neurodiverse people, their families and carers, lives will sadly continue to be damaged in this way.

I'd firstly like to thank Hefin David for bringing this important debate to our Chamber today. I very much hope that his personal experiences with his beautiful daughter, and knowledge that he now has, will be listened to. For most of what you've said, you've had that experience, unlike most of us here, and you know what is needed to right the wrongs of the system. The current state of affairs isn't good enough. Currently, we're seeing a two-year-plus waiting list for children to see an NDT specialist, which is storing up significant issues for the future and, in my opinion, putting children's learning and life chances at significant risk. Without the NDT appointments, we now have children not being clinically identified as autistic or having ADHD, resulting in poor levels of understanding and provision, thus creating a scenario where children are simply not being adequately supported to thrive. I have also been told of one case of a parent potentially having to go into debt to fund a private referral for their child. I've also been told that headteachers and teachers can put measures in place themselves to support literacy and numeracy—that's not the issue—but what they have stressed and what they do struggle with is that neither headteachers nor teachers have the training or capacity to provide vulnerable learners with what they need and that support, which often results in exclusions, as they can't deal with that behaviour. I would ask the Welsh Government now, as we have a new ALN system coming into play, that we have real and regular checks on it and safeguarding in place, to ensure that the scheme does alleviate all our concerns here today, and that we don't let any more children slip through the gaps. Thank you.

The Deputy Minister for Social Services to reply to the debate. Julie Morgan.

Diolch, Llywydd, for the opportunity to respond to this debate. Firstly, I'd like to thank my colleague Hefin for putting forward this really important topic. I know there is a lot of interest in the Chamber on this topic. Obviously this is so personal to him, and I'd like to thank him very much for sharing his personal experiences with all of us here today. Diolch, Hefin.

I do recognise the challenges faced by individuals living with autism and other neurodevelopmental conditions, and I've heard experiences first-hand from parents of children with autism and with ADHD. I also met with parents of children with tic disorders and Tourette's syndrome—a meeting where my colleague the Member for Caerphilly was able to join with me. I think having those meetings with some of the most powerful voices that stressed the need of what we have to do and these meetings where parents have told me about the struggles they're experiencing trying to access support are at the forefront of my mind as we strive to make positive changes.

So, firstly, let me restate my commitment to making sure that all neurodiverse children, young people and adults, along with their parents and carers, have access to the services and the care they need. There is a lot to do, I absolutely acknowledge that, but we have taken big strides in moving forward, and this includes the success of the integrated autism service that is providing assessment and support services for adults and help for families, and this is supported by £3 million of Welsh Government funding each year.

Our programme for government commitment to introduce a statutory code of practice on the delivery of autism services has also been achieved, with the code coming into effect on 1 September last year, and we are seeing a clear commitment from statutory organisations to embrace the code and proactively improve services and support. Our national autism team is working directly with regional partnership boards to help them develop an autism infrastructure and appoint an autism champion role in each area. The code has given us the foundation from which to make a real change in improving services for autism and other neurodevelopmental conditions.

During stakeholder engagement when developing the code, we listened when we were told that despite the progress made in autism services, many people with other neurodevelopmental conditions and their families and carers are still struggling to access the support they need, even though their needs were often similar or were co-occurring with autism. This situation was echoed in my meeting with parents of children with ADHD and Tourette's syndrome.

So, this is why we are widening our approach, from a focus on autism to seeking improvements across neurodevelopmental conditions, so we now have a dedicated policy team working across health and social care, linking closely with education colleagues. Our national autism team is also expanding its remit and expertise to provide advice across neurodevelopmental conditions, and we want to make sure that the progress that has been made with autism is extended to the other conditions and that they all work together, and I think that's a really important development. We know, and it's been mentioned in the debate by several Members today, that assessment services are experiencing increasing demand with long waiting times across children and adult services, and for some conditions, new service pathways are needed. So, to better understand this complex area and to identify options for improvement, we commissioned a demand and capacity review of neurodevelopmental services last year and the authors have now presented their findings to me. I'm currently considering the final report from the review, which has provided strong evidence for the need for a programme of improvement to put in place sustainable services that have clear and easy access. And I think Hefin mentioned the importance of the support that's needed while you wait for a diagnosis, and I feel that that is absolutely key.

I'll come back to colleagues shortly when we publish the review and I will be making an announcement about the immediate medium and long-term actions we'll be taking to support improvements. This will include urgent action to reduce the pressures on assessment services and to put in place early help and support for families who need help now.

It's important to acknowledge that neurodevelopmental services reform will build on the successes of the Together for Children and Young People programme and its neurodevelopmental work stream, which comes to a close at the end of September this year. I must thank those involved for all they've done. We're working to ensure there is a smooth transition from the programme to ensure that all of the good practice is captured and that the strong relationships built by the programme team are maintained and further strengthened.

Future policy and delivery will be co-designed with individuals and families with lived experience of neurodevelopmental conditions. We recently issued a survey through our networks and social media to gather current experiences of those who are seeking access to assessment and support on a waiting list or who have had contact with services. The survey was live for over eight weeks and we received over 370 responses. We are currently reviewing the feedback received, and an early theme identified reinforces the need for better pre and post-diagnosis support, something that is reflected in the findings from the demand and capacity review. 

Another key area of feedback from parents is support in schools, and that has been mentioned, and Hefin mentioned that very powerfully today. I was very struck by the figures: 76 per cent of autistic children bullied in school; 20 per cent exclusions. I really feel that we have to address this issue. The role of education in supporting neurodiverse children and young people is absolutely crucial. We're working closely with education colleagues, who are delivering improvements through the additional learning needs reform, to ensure the needs of neurodiverse children and young people are recognised, and that staff have knowledge and skills to support them. I was so struck by what the parents in the group I met with children who had ADHD said, and also talking about how crucial the way that the school responded to those children is, and the difference it made to their lives. 

I'm looking forward to next week, visiting two schools in the Carmarthenshire area who are working hard to support neurodiverse pupils to maximise their potential and widen the opportunities for them. One of the schools has recently received an award from the ADHD Foundation for its work, and we want to share the experience of that school, because I think there are many ways that schools could shift towards being ADHD-friendly; it would make such a huge difference. 

And I also want to recognise the role of the third sector, who've been instrumental in the progress we've made with the autism code of practice, and will have a pivotal role in our neurodevelopmental reform, particularly in providing both pre and post-diagnosis support services.

So, in conclusion, by the end of this Senedd term, we want to be successful in reducing the pressures impacting on neurodevelopmental services, and ensure families can access early help and support quickly, as well as timely assessments. So, we want neurodiverse children, young people and adults to feel supported and equipped to meet the challenges of daily life now and in future years to come. I'd like to end again by thanking Hefin for bringing this debate, and for Laura Anne and Mark's contributions. Thank you. Diolch.

Thank you very much. That brings our proceedings to a close.

The meeting ended at 17:52.