Hansard

I thank those members who signed my motion to enable the debate to happen. It is a very important debate, because it is difficult to overstate the level of frustration and anger that exists among the various learning disability and neurodiverse communities. I speak today not as an MSP but as someone with attention deficit hyperactivity disorder, and I will give members a little personal insight into the level of frustration that people with neurodiverse conditions face.

Before I stood for election to this place, I had a conversation that probably all of us have had with our election agents. Is there anything that they should know about—anything that, if it came out, could damage the party or damage the candidate’s chances? Obviously, they have in mind things like substance misuse or a gambling problem, but I told my agent that I had ADHD and that I am medicated. I thought that that could hurt my election chances and that it would potentially shame me and my party. I thought that having my condition, and taking the medication that I use every day to help me with it, was a source of shame to be kept secret.

I say that because it shows the level of stigma that we are still combating and the issues that we still face and why we need visibility. However, this debate is not about me but about everyone out there, because crisis surrounds these conditions at every single level. I met autism campaigners in the garden lobby just before the debate, and they agreed with me: crisis permeates every level, from the personal outwards. An adult might be seeking a diagnosis because they have hit a crisis in their life, whether that relates to their work or their family. Families face a crisis in dealing with the challenges of having children with neurodiverse conditions or learning disabilities and in the struggle to manage those conditions while dealing with day-to-day life.

Above all, the system is in crisis. It was in crisis before Covid and it is certainly in crisis following Covid. Before the pandemic, we knew that the numbers of those with additional support needs were growing ever higher but the system was falling back. While the number of children with additional support needs has doubled since 2014, the number of ASN-qualified teachers has dropped by 12 per cent. We know that there is a crisis of part-time timetabling and illegal exclusions of children with neurodiverse conditions in our schools. Indeed, we particularly know about that from the publication “Not included, not engaged, not involved: A report on the experiences of autistic children missing school”, which was commissioned by the National Autistic Society Scotland, Scottish Autism and Children in Scotland.

We know that the core number of children accessing co-ordinated support plans is going down, despite the number of those with additional support needs going up. We know that the pathways are simply not there and that therapies are not available. For many people with autism, diagnosis is the end point—there is nothing else in place to help or support them. There is no therapy, no support and no assistance, and that was the situation before the pandemic.

Since then, we have seen waiting times go through the roof, a medicine shortage that means that people with ADHD cannot get that vital lifeline, and school refusals of astronomical proportions. In the best-performing local authority, the proportion of persistent absences stands at 20 per cent, rising to just under 40 per cent in the worst.

That is the crisis that we are facing. The reality is that, in most parts of the country, someone cannot now get an assessment for autism or ADHD. Most recently, NHS Tayside has stopped referrals, but pretty much every part of the country has either temporarily or permanently ended the process of putting new people on the waiting list. Those on the waiting list are looking at waits of almost a lifetime—14 years, in some cases. If a child is suspected of having ADHD or autism, it is very unlikely that they will get a diagnosis, let alone treatment, during their time at school. That is the nature of the crisis.

Above all else, we face injustice. These conditions are still the punchlines of jokes, and the figures in relation to deaths and the justice system provide evidence of such injustice. If someone has a learning disability, their life is likely to end 20 years earlier than that of an average person; for someone with autism, it is 16 years. Someone with any one of the conditions covered by neurodiversity is between twice as likely as and 10 times more likely than the general population to be in the prison population.

That is why we needed a bill. We needed action and visibility for these invisible disabilities. A bill would have brought a focus to these conditions, which are all too often just a bolt-on in public policy. It would have brought co-ordination, because these are complex conditions that span education, healthcare, social care and other forms of assistance.

Above all, we needed resolution. I can tell colleagues that, in reading the consultation responses to my proposed bill to prevent restraint and seclusion in schools, I found the level of desperation overwhelming. Parents simply could not get the services that they were supposed to get from schools and health providers, and, when they saw things going wrong, they could not get the information or the help that they needed. We needed a commissioner to provide access and to act as an ombudsman to ensure that people get the services and the assistance that they need.

The reality is that cancelling and withdrawing the proposed learning disabilities, autism and neurodivergence bill has returned us to the point of invisibility. All the time and effort that various organisations put in, the compromises that they made, the negotiations in which they engaged, and the shared understandings—some of which, believe you me, were difficult and painful—have all been for naught.

The worst thing about it is that there is no alternative. Nothing has come forward from the Government since October, when it withdrew the bill—nothing. There is no proposal for how to make things better, despite the fact that—let us be clear—we do not need to legislate to make things better.

We could start, for example, with better data recording. Right now, we do not know the waiting times for assessments for ADHD and autism; that measure is recorded in England and Wales, but not in Scotland. Even if we had just that and we knew the scale of the problem, that would be better than the current situation. We need to tackle the backlogs and the absurd positions that have been adopted on shared care by general practitioners and health boards, which have decided that practices that were once normal are no longer possible. We also need better pathways from school into assessment.

I stress that we should not just legislate. If what it takes is a person to bring a focus, to provide the level of attention and co-ordination that is needed, to cut across portfolio barriers, and to act independently, we should simply employ them and create that position in the civil service. There are 29,000 civil servants in this country. If the Government is saying that it cannot find one person to do that job and enough people to provide that person with support, what on earth are we doing?

I will end with this question: the Government has withdrawn the bill, so what is it going to do?