The final item of business is a members’ business debate on motion S6M-16644, in the name of Daniel Johnson, on the learning disabilities, autism and neurodivergence bill. The debate will be concluded without any question being put, and I invite members who wish to participate to press their request-to-speak buttons.
Motion debated,
That the Parliament notes its disappointment at reports that the promised Learning Disability, Autism and Neurodivergence Bill was not announced in the most recent Programme for Government; believes that people with learning disabilities, autism and neurodivergence in Lothian and across Scotland are structurally excluded and disadvantaged, and that it is harder for them to achieve their potential than people who are neurotypical; considers that the measures included in the draft Bill, such as creating and upholding statutory rights, improving access to mental health services and tailoring education provision, would break down some of the barriers faced by people with learning disabilities, autism or neurodivergence, given that a reported 37% of schoolchildren reportedly have additional support needs but that only 6% of teachers are trained to provide these, and notes the calls on the Scottish Government to provide clarity on its commitment to legislating in this area.
17:02
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?
Before we move to the open debate, I advise members that the debate is heavily oversubscribed, which will come as a surprise to nobody. I will therefore require members to stick to their speaking-time allocations.
With that, I call Karen Adam. You have up to four minutes, Ms Adam.
17:10
I congratulate my colleague Daniel Johnson on securing this members’ business debate, and I thank him for his continued openness on this issue. I, too, feel deeply passionate about it, because it also affects me and my family. Ultimately, it is about how society is run, because it cuts across everything, from education and healthcare to employment and justice. Right now, neurodivergent people feel that they are being let down everywhere, in all of it. I want to tell them that I see it and that I validate them and their experience.
Around 84 per cent of autistic adults are unemployed, despite so many of them wanting to work, and nearly 66 per cent have contemplated suicide. People are waiting for years for a diagnosis and, in some areas, local authorities, health boards and integration joint boards have paused referrals. I agree that it is a crisis. Those are not abstract numbers—they are people’s lives. They are people I represent, people I know and people who email me every single week. In fact, it is the top issue on which I receive correspondence.
In my various roles as a local councillor, an MSP and convener of the Equalities, Human Rights and Civil Justice Committee, and as a mum and a neurodivergent woman, I have seen and heard many devastating stories. There are women who have spent decades without a diagnosis, dismissed or misdiagnosed, and who are completely burnt out; there are families who are stuck in cycles of poverty because they cannot access suitable work; and there are young people who are overwhelmed by a system that was never designed for them in the first place. We often hear people say, “School just wasn’t for them,” but it should be—we should create an environment for them.
I was disappointed that the proposed LDAN bill was not included in the most recent programme for government, but I welcome the fact that the Scottish Government has a continued commitment to publish that draft legislation. I can tell members today that I know that the Minister for Social Care, Mental Wellbeing and Sport, Maree Todd, is genuine in her care for that work and the people it impacts. I know that from the conversations that I have had with her, and I am grateful for it.
I believe that there are things that we can do now. We can embed understanding of neurodivergence across public services, ensuring that every GP, teacher and social worker is equipped with the training to recognise and support neurodivergent people. We can create clear national diagnostic pathways with self-referral options, and we can accept private diagnoses though the national health service from those who have felt the urgent need to pay for a diagnosis themselves.
We can begin early screening where neurodivergence might be masked, especially when people present with addiction, eating disorders, anxiety or chronic fatigue, because those are often the red flags. If we embed that thinking in our systems, we can intervene earlier and more effectively. We can improve the school experience by increasing the number of ASN teachers and adopting neuro-affirming approaches, along with quiet spaces, flexible transitions and reduced sensory load. Those things do not require new legislation; they simply require compassion and leadership.
We can challenge employers to build inclusive workplaces. We know that, in our justice system, a high proportion of people in custody are neurodivergent, and that is why we must act at the point of entry by signposting individuals for a neurodivergence assessment. Doing so could open up a pathway to not just support but true rehabilitation.
None of that needs to wait for a bill, but a bill can provide the backbone to sustain and scale that change. It can put rights on a statutory footing and help us to track and close the gaps. It is not about battling neurodivergence, but about building a society that welcomes it with all its potential.
17:15
I thank Daniel Johnson for bringing the debate to the chamber.
Even during my campaign to be elected back in 2016, it was clear that more support was needed to help autistic and neurodivergent people in all walks of life. Many members will be aware that, in 2017, Annie Wells and I co-founded the cross-party group on autism, and I remain its convener. The CPG remains one of the most well-attended groups, and I am delighted to welcome some of its members to the public gallery today. Unfortunately, however, the improvement in attendance at the CPG has been inversely proportional to the decline in service provision, and the recent cuts will only make the situation worse.
The proposed LDAN bill has been a key topic at the CPG, and many members took part in the Government’s consultation last year. It was a great disappointment, therefore, when the Scottish Government dropped the bill from its programme for government, kicking it beyond the 2026 Holyrood election. It was even more disappointing that the minister declined an invitation from the CPG to discuss the bill’s future. CPG members feel abandoned by the Scottish National Party over its lack of accountability and clarity about whether there will be any real action by the Government to improve support and services for autistic people and those with learning disabilities. I take this opportunity to again invite the minister to meet with the CPG on autism.
The debate comes at a time of an unfolding national crisis in autism and ADHD assessments. Delays in waiting times for assessments for both adults and children and a growing backlog of referrals to child and adolescent mental health services mean that the service has now reached boiling point, with assessments being withdrawn altogether.
In Aberdeenshire, the IJB has pulled out of the current adult autism and ADHD assessment service due to a lack of funding from the Scottish Government. A total of 1,800 adults, some of whom have already waited for nearly four years for an assessment, now have no idea when or even if they will get one. NHS Tayside has halted new CAMHS referrals for autism and ADHD, leaving vulnerable children at risk of getting no support, adding insult to injury by announcing it on Facebook. I am glad that, at First Minister’s question time last week, the First Minister had the grace to admit that that was poor communication.
Services are screaming for more money from the SNP Government, which, instead, spends millions on trivial pursuits rather than the real issues facing the people of Scotland. Late diagnosis and a failure to provide support only cost individuals and Scotland more in the long run, but it is no surprise that the economically illiterate SNP is unable to see that. I therefore ask the minister to confirm today what action she will take to ensure that there will be access to diagnostic services and not a postcode lottery in support.
The minister will also be aware that I have an autistic constituent who has been held in the state hospital for more than 15 years. Despite years of pressure and the publication of the SNP’s own “Coming Home Implementation: A report from the working group on complex care and delayed discharge”, the Government is still sending autistic people to the state hospital, more than doubling the number of vulnerable adults who are being locked away with some of Scotland’s most hardened criminals. That remains a national scandal.
From the motion for debate today, it is clear that the SNP Government has had its eye off the ball for years, standing by as services are now being removed altogether. Some of our most vulnerable children and adults are at risk, and that simply cannot continue.
17:18
I commend my colleague Daniel Johnson for securing this members’ business debate, and I thank him and Karen Adam for their openness in talking about their neurodivergent conditions.
It is estimated that more than one in 10 Scots live with a neurodevelopmental condition. Conditions such as ADHD and autism affect many aspects of people’s lives, from their ability to study and progress in their careers to the relationships that they need in order to thrive. Awareness of those conditions has grown, with referrals for ADHD assessment alone increasing by as much as 800 per cent across Scottish health boards between 2019 and 2021, according to a recent Royal College of Psychiatrists report.
Without systematic change, waiting times are predicted to exceed 10 years within the next couple of years. As Daniel Johnson indicated, some people are waiting for as long as 14 years. If the Scottish National Party Government does not take decisive action, children could spend their entire school years without the support that they need. Children cannot wait, and parents cannot wait.
Although those figures might seem overwhelming, there is straightforward support that can make a huge difference to somebody with a neurodevelopmental condition. To access that support, they first need a diagnosis, and there is no dedicated pathway for such cases. Instead, services that are intended for patients with complex mental health conditions, such as schizophrenia and bipolar disorder, are absorbing the referrals. That benefits no one. Psychiatrists are leaving because of burnout, and people with severe mental illnesses are not getting the specialist care that they need, while people who are trying to cope with neurodevelopmental conditions are left in limbo. That is fundamentally wrong. The SNP Government is acting as if it hopes that the issue will simply go away. We owe it to the young people and their parents to address the issue as a matter of urgency.
We have already heard that the SNP promised a learning disability, autism and neurodivergence bill but it failed to announce it in the recent programme for government, and we now know that it is shelved. However, we do not need to legislate to make progress.
Meanwhile, the SNP has met its target for child and adolescent mental health services only because it has stopped counting children who have ADHD or autism. No data is collected centrally on the length of waits for neurodevelopmental services. More recently, the Royal College of Psychiatrists has proposed a solution that includes a public health campaign, national self-help resources in the style of NHS Inform, working with the third sector at local level and investing in neurodevelopmental specialists.
I ask the cabinet secretary—or, rather, the minister; I have just promoted her, but, if she does this, we will actually promote her. Will the minister provide a dedicated pathway for those with a neurodevelopmental condition, even if they are still waiting on an official diagnosis? We know that early intervention makes a huge difference. Will the minister commit to recording data on the length of waits, so that there is accountability for those who are experiencing unacceptable delays? Finally, for people with neurodevelopmental conditions, how does the minister intend to meet the Government’s recent commitment that nobody will wait longer than a year to receive treatment—or is the SNP going to let down a generation of young people?
17:22
I, too, thank Daniel Johnson for securing the debate, which enables us to discuss the implications of not introducing a learning disability, autism and neurodivergence bill timeously and helps us to focus our collective endeavours towards immediate actions that must take place across every part of our public services, and indeed at the heart of our communities, our workplaces and society at large.
Karen Adam and others have listed many such actions that we can take. The status quo simply does not work for people with learning disabilities or neurodivergence. In turn, that means that it is not working for society as a whole, and we are all poorer because of that.
I stand here as a not formally diagnosed but self-declared middle-aged woman with ADHD. It came as quite a shock at first, when it was suggested to me by a specialist a few months ago, but, over the past few months, I have begun to understand myself through that lens better than I have ever done in my 50 years on this earth. However, my journey and my family’s journey to this time and place have been born of five years of immense struggles, tears, school avoidance, trauma and a colossal fight that seemed as if it was being fought on every front. It felt as if we were doing battle with the system and were taking on heavy casualties at every turn.
My husband and I are parents to a wonderfully unique, funny, kind and intelligent young person who is autistic and who has ADHD. When I look back, it amazes me that the world could not see early on what is so blatantly obvious now. That lack of seeing them for who they truly are, which would have enabled supports to be put in place, led us to a very dark place that involved complete school refusal and a retreat from the world at the age of 13. I cannot adequately describe the anxiety, the sleepless nights, the tears, the frustration and the palpable anger and impotence that we felt as parents.
Our child was totally failed by a system that shut them out from being able to participate fully in their own life. They are not alone. My inbox is full of families and adults crying out for support for themselves or their loved ones, whether that is the parents of a learning disabled young person on the cusp of transitioning into adult services who realise that there is little meaningful provision or opportunities on offer; parents who are in the situation that we were in of battling to have their young person’s needs assessed and acted on while trying to keep their own heads above water; or adults who, like me, realise that they are neurodivergent but find that waiting lists for assessment are either closed completely or require a co-occurring severe and enduring mental health condition—potentially giving rise to such a severe mental health condition, substance use or binge eating. I could go on and on.
None of that is in any way acceptable. However, the vast amount of work that had been undertaken on the LDAN bill gave me huge hope that the system could finally be made to change so that people with learning disabilities or neurodivergence or who are autistic—or, indeed, people who have a combination of all those issues—could live their best authentic lives. I was devastated when the bill was not included in the programme for government and when a commissioner role was not to be created.
I agree with Autism Scotland, Aberlour and others that creating a new commissioner would be a key driver for change and would ensure accountability through an independent role, with statutory powers and duties, that would champion the rights of all people with learning disabilities, autism or neurodivergence. It would be their role to challenge Governments, councils and employers and to drive the change that is required for rights to be respected, protected and fulfilled.
Imagine a Scotland where there is no disability employment gap. We have heard about how devastating that gap is. Such a change is not one that can be overseen by a single minister, a single committee, a Parliament, a council chamber or a sector. This is a multisystemic failure that requires a whole-system, whole-community and whole-family approach.
The human cost of the status quo is horrific, but it also has a cost to the public purse. We have a lot of good policies, but the implementation gap persists, along with the clear local accountability gap. That must change. [Applause.]
17:27
I thank Daniel Johnson for bringing the debate to the chamber and for sharing his personal experience, because that really does matter. I also thank organisations such as the National Autistic Society, the Scottish Commission for People with Learning Disabilities, Enable Scotland, Scottish Autism and Differabled Scotland in my region of Glasgow—to name but a few—for their tireless work on the rights of people with learning disability and neurodivergence.
This is an issue that I and, I suspect, many of us hear about regularly from constituents. I will use my time today to share some of their voices and stories. Although the Parliament has made welcome commitments, I think that we can all agree that there remains a huge gap between those aspirations and the everyday reality.
I recently met a grandmother who is the kinship carer of a young boy with autism. She told me that he had gone weeks without sleeping properly, that he had stopped eating and that he had become increasingly distressed and aggressive. She said that she had done everything right: she had contacted services, followed up and asked for help, but, months later, she was still waiting to hear back, including from child and adolescent mental health services. She is doing everything that she can to support him, but she is exhausted and still has no support.
She is not alone. Another family told me that they had been waiting more than two years for an ADHD diagnosis for their son. Without that, he cannot access sleep support or medication; without those, his wellbeing and that of his whole family are deteriorating. Their GP told them that nothing more could be done until a diagnosis was made, but there is no clarity on when that will happen.
It beggars belief that this is happening at a time when services are facing dramatic cuts. In my region, families and professionals are raising serious concerns about a reported £1.5 million cut to crucial mental health and care services—services that are already stretched. One impact will be that the planned ADHD pathway that was going to be put in place will no longer go ahead. Another impact will be that planned health checks for people with learning disabilities will not go ahead—against the backdrop that they are likely to die 25 years earlier than others. That is unfathomable.
Such cuts do not reduce need; they delay care, deepen distress and could result in the most terrible of consequences.
My friend Pam Duncan-Glancy is making a very compelling case. Does she agree that, in addition to the learning disability health checks, issues such as the “Coming Home Implementation” report, too many people being in long-stay institutions, inaction by the Government on human rights and, indeed, the outcome of her Disabled Children and Young People (Transitions to Adulthood) (Scotland) Bill have all represented failure? Does she also agree that people with a learning disability would say that they feel failed by the whole system?
I thank the member for that intervention, and I whole-heartedly agree that people with learning disabilities and others will absolutely feel entirely failed.
The education system is under untold pressure. To deliver for all young people, everything in it—from support for staff and pupils to the design of school buildings—needs to change. All the stories that we have shared today tell us—and we hear repeatedly—that the current system is failing people with learning disabilities and neurodivergence, as my colleague Paul O’Kane just highlighted. All too often, support comes only when families are already in crisis.
The proposed learning disabilities, autism and neurodivergence bill was a chance to address those challenges, and the fact that there is no bill is, of course, a huge disappointment. The families we represent deserve better—they deserve clarity on timescales, and interim steps must be taken now to improve outcomes while we await the bill. We also know that the current approach to accountability is not fit for purpose. Families are left with nowhere to turn when services fail to meet their needs, and responsibility is blurred across multiple agencies. That is why there is a growing call for stronger oversight, whether that is through a dedicated commissioner or commission or through another model. We recognise that there is not yet consensus, but we know that we need action and a mechanism with teeth to deliver the rights of this group of people. We need that action to bring people together and to drive real and lasting change.
We often say in the chamber that we want Scotland to be the best place in the world to grow up in. In order for that to be true, it has to be the case for every child, and we have the responsibility to make it so. That needs action, not just warm words, and the Government has a responsibility to do that quickly to ensure that no one is left waiting, or fighting, for the support that they deserve.
17:31
Michael has spent more than 15 years in hospital. He is autistic with a severe learning disability. He finds routine comforting, and unexpected changes cause distress, leading to self-harm or lashing out. At times, he is placed in seclusion for his and others’ safety.
Michael is ready for discharge—he has been ready for discharge for years. His father has seen multiple housing plans fall through, and he fears that Michael has become institutionalised, with limited support to maintain his independence or his skills. Cost concerns and the risk of unsuitable shared accommodation add to Michael’s father’s worries. After years of setbacks, he doubts whether Michael will ever be discharged.
The Mental Welfare Commission for Scotland highlighted that story just a couple of months ago in its report “Hospital is not home: The circumstances of people with learning disability and complex needs who have been in hospital for 10 years or more”.
Unfortunately, Michael’s story is not unique. In the Equalities, Human Rights and Civil Justice committee this morning, we heard that 55 people in Scotland have been institutionalised for over 18 years—10 of them for more than 25 years. That is 25 years of living in hospital when there is no medical or clinical reason for them to do so.
The Scottish Human Rights Commission told the committee this morning that prejudicial attitudes to people with learning disabilities, autism and neurodivergence are entrenched. The SHRC and all the third sector organisations that support autistic people and those with learning disabilities should not still be having to make the case that independent living is possible for everyone. It is not a matter of opinion; it is a matter of human rights. Everyone has the right to live in the community and can do so if they are supported appropriately.
Attitudes are clearly demonstrated through actions. When actions such as seclusion, restraint, overmedication and restrictions on food become the norm, and when people are cut off from education or their wider support network and prevented from forming relationships or from choosing with whom to live, and when those actions happen daily, it is clear that discriminatory attitudes and cultures must change.
In committee, we were specifically discussing the findings and recommendations of the SHRC’s report “â€Tick Tock…’ A human rights assessment of progress from institutionalisation to independent living in Scotland”, and it was clear that our collective failure to meet promised timescales for change or to implement various legal reforms for empowerment and redress should shame us all. We should not, and cannot, ignore the failure of the state to support the realisation of basic human rights.
It is for those reasons that the delay in bringing forward the LDAN bill, in addition to the delay in the Government’s proposed human rights bill and in other pieces of legislation, is so frustrating. Other members have discussed many issues that the LDAN bill would have helped to address, but I want to highlight one area of concern with regard to how the proposed bill was developed, which I hope that the minister will address in closing. During that process, the voices of autistic people and of those with lived experience of neurodiversity were not always heard. Serious concerns were expressed by those people about the use of behaviourist approaches such as positive behaviour support and applied behaviour analysis, but those were not addressed and were not taken into account in the consultation on the bill. The trauma that approaches such as PBS and ABA cause was ignored.
Can the minister outline how the Scottish Government is actively listening not just to organisations that support autistic and neurodiverse people, but to autistic and neurodiverse people themselves? They know best about their lives.
I very much thank Daniel Johnson for securing this important debate, and I express my immense gratitude to all those who work so hard to ensure that we hear the voices of autistic and neurodiverse people and those with learning disabilities, because their voices matter.
17:35
I, too, thank Daniel Johnson for bringing this very important issue to the chamber. I am pleased to speak on behalf of the Scottish Conservatives on this subject, which has also been a topic of interest for the Equalities, Human Rights and Civil Justice Committee, of which I am a member. So far, the committee has held three sessions on the learning disabilities, autism and neurodivergence bill, and today we held a session with the Scottish Human Rights Commission.
The evidence on the bill included private and public sessions with people with real-life experiences of learning disabilities, as well as a public session with the Minister for Social Care, Mental Wellbeing and Sport. In today’s committee session with the SHRC, witnesses said that there was a clear absence of impact from the Scottish Government’s successive policies and plans when it comes to people transitioning from institutionalisation to independent living.
It is estimated that neurodevelopmental conditions affect between 10 and 15 per cent of the Scottish population. However, those conditions are significantly underdiagnosed. Neurodivergence and learning disabilities often co-occur, with an estimated 37 per cent of autistic people having a co-occurring learning disability. A total of 66 per cent of autistic people in Scotland say that they feel socially isolated, while the same percentage of autistic adults have considered suicide during their lifetime.
Two other areas were highlighted by witnesses during the committee’s sessions on the learning disabilities, autism and neurodivergence bill. One was the lack of assessment and diagnosis for learning disabilities, which has been mentioned today, and the second was the lack of adequate training for public bodies such as the police and councils. Witnesses said that such training was weak and not adequate or uniform. Many witnesses said that, because of the lack of training, they felt stereotyped and more likely to face discrimination.
Many survivors of domestic abuse who have learning disabilities said that they felt that they were not taken seriously when speaking to the police, as it was difficult for them to show emotion or to articulate what they wanted to put across. I spoke to a witness who said that black and minority ethnic people with learning disabilities faced more discrimination, with multilayered intersectional aspects. She said that she was discriminated against at work but did not know whether that discrimination came about because of her colour or her ability. She said that there was a lack of resource tailored towards BAME people with learning disabilities.
In one of the public evidence sessions on the learning disabilities, autism and neurodivergence bill, witnesses told us that the consultation was excessive. Many charities and individuals had to sacrifice a lot of time and resources to respond to the consultation only for the bill to never be published by the Scottish Government. People with real-life experience of learning disabilities said that they felt that they were at the bottom of the pile when it came to Scottish Government priorities.
We also heard that people with learning disabilities are more likely to be domestically abused. In fact, the minister said at committee, in response to one of my questions, that
“around 90 per cent of women with learning disabilities will experience gender-based violence.”
However, as I noted at that meeting, of the 64,000 incidents of domestic abuse that were recorded by Police Scotland last year, we do not know how many involved a victim with learning disabilities. In response to that point, the minister said that
“the data is weak, and more work needs to be done to improve that.”—[Official Report, Equalities, Human Rights and Civil Justice Committee, 3 December 2024; c 16-17.]
Data collection was also mentioned in today’s committee session with the Scottish Human Rights Commission. Those figures are shocking, and those people should no longer be let down.
In closing, I express my disappointment at the Scottish Government’s delay in introducing this vital legislation. More needs to be done, and I hope that warm words are turned into actions and that the Scottish Government provides clarity on its commitment to legislate in this area.
Before I call the next speaker in the open debate, I am minded, given the number of colleagues who still wish to participate, to accept a motion without notice, under rule 8.14.3, to extend the debate by up to 30 minutes. I invite Daniel Johnson to move the motion.
Motion moved,
That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Daniel Johnson]
Motion agreed to.
17:40
I thank Daniel Johnson for bringing this important debate to the chamber. In working with other members across the parties, he has been a real champion in the Parliament for people with learning disabilities, autism and neurodivergence.
The Scottish Government committed to the learning disabilities, autism and neurodivergence bill in its programme for government for 2021-22. That was at the very start of my journey as an MSP. At that time, I was approached by constituents and by professional organisations that asked me to support the bill. I must say that people were extremely positive and excited to see that piece of legislation advance.
In summer 2022, I had the great pleasure of attending the Borders Additional Needs Group’s branching out transitional youth camp. It was at that point that I realised that the bill was not progressing as many had hoped, following the indication that another consultation period would be added. That consultation did not commence until December 2023. In the short time that I have in which to speak tonight, I want to raise the voices of my constituents. I do not think that the frustration of those people and their families can be overstated.
During the four years that I have been in Parliament, this subject has featured as one of the most frequent requests in my casework. Often, it starts with a simple request: people just ask, “Can you help me to understand?” I believe that my colleagues in the chamber will have had the same type of request time and again. As łÉČËżěĘÖ, we all know that that simple request becomes bigger and bigger as families have to fight every step of the way for assessment, treatment and support.
The lack of leadership and the lack of urgency from the Government to legislate in this area is absolutely and utterly unacceptable. It seems that there is little doubt among experts and families that the bill should be in the Government’s programme for government, and it is not good enough to delay it any further if we truly want to change outcomes for people.
I have some very dear friends who have experience of the service provision for both adults and children with autism and ADHD in Ayrshire. They and many other families across my South Scotland region have had considerable difficulty in finding adequately trained GPs. When families, out of sheer desperation, seek private consultations, there is a lack of shared care and of clarity and follow-up with treatment plans. That all causes undue stress as well as considerable debt for families who can little afford it.
Other families have approached me about the complex systems that are in place to divert referrals from CAMHS. That issue is raised with me regularly—families do not feel supported, and they are provided with few options for support with diagnosis and/or treatment and/or integration with other services such as education and employment. The systems lack any opportunity for appeal on rejected referral routes, and families are already struggling and exhausted by the system itself. It is absolutely unacceptable.
In addition, families have raised with me the lack of training for education professionals, which means that opportunities to break down barriers and to enable people to fulfil their potential are missed. Education services are asking for training and resources, but the Government seems to be unable to respond to the need.
There is little doubt that the legislation should be progressed, to address many of the issues that have been raised by my constituents and by other members in this debate. I hope that the minister provides some answers to my constituents in summing up.
I call Stephanie Callaghan, who joins us remotely.
I gather that we are having slight issues with Ms Callaghan’s camera, so I will go first to Stephen Kerr, and we will go to Ms Callaghan after that. You have up to four minutes, Mr Kerr.
17:44
Daniel Johnson gave a powerful and compelling speech, and a number of other members have given similarly compelling speeches. To be frank, it is to the shame of us all that in Scotland, a wealthy country, we cannot help our citizens at the most basic level. I may disagree with Daniel Johnson about a lot of different aspects of our politics, but I think that we share a fundamental belief that every individual in Scotland, whether they are neurotypical or neurodivergent, deserves fairness, dignity and the opportunity to thrive.
That is why I am standing here today, speaking on behalf of my constituents in Forth Valley who are being denied precisely those things. As members of the Parliament, we carry the responsibility of building a Scotland where every person is supported to reach their full potential, where barriers are dismantled and where work is not just a means to an end but a path to purpose, independence and respect.
However, the actions of this Government and NHS Forth Valley run counter to that vision. NHS Forth Valley’s decision to withdraw the adult autism diagnostic service is, to put it bluntly, a serious misstep. It has been made with poor communication, no meaningful consultation and, most alarmingly, no clear alternative for those affected. Let us be absolutely clear that those who are affected have waited years for understanding, clarity and access to support. In recent weeks, I have written to the Cabinet Secretary for Health and Social Care and the chief executive of NHS Forth Valley to express my deep concern about the decision. I await an answer from both of those individuals.
It is not a simple service adjustment; it is a profound and damaging disruption to people’s lives. In those letters, I have asked the questions that people in my constituency are asking. What happens to those who are already on the waiting list? What pathways now exist for those who are seeking a diagnosis? What are employers meant to do when individuals who are visibly in need of support cannot obtain the formal recognition that is required to unlock that support? Those are not abstract questions; they are practical and urgent concerns, particularly for those who are seeking work and now face yet another barrier to opportunity.
A diagnosis is not the end of the journey—it is the beginning. A diagnosis is a key that unlocks access to the support and adjustments that people need to succeed in work, education and life. Without a diagnosis, people are left unsupported and without the kind of help that will make all the difference to their lives. It is, frankly, unjust.
This is not about political ideology; it is about basic fairness and ensuring that our public services empower people rather than hold them back and that they open doors rather than quietly close them. The message that this decision sends is deeply troubling. It discourages people from seeking help. It frustrates employers who want to do the right thing. It undermines trust in the very services that should be lifting people up.
I want every individual in Forth Valley and across Scotland to be able to realise their fullest potential. That means having the right services in place at the right time and listening to communities before decisions are made, not after. I urge the cabinet secretary to intervene and to engage directly with NHS Forth Valley to see that the service is reinstated and to ensure that there is national direction so that access to support does not become a postcode lottery.
Thank you, Mr Kerr. I now call Stephanie Callaghan. We might still have issues with the visuals, but I hope that the audio is functioning. After that, we will go to Michael Marra. Stephanie Callaghan, you have up to four minutes.
17:48
Thank you, Presiding Officer. I wish that you had a better photograph of me on the screen, but we will let that pass.
Again, I thank Daniel Johnson for bringing to the chamber today’s debate on the learning disabilities, autism and neurodivergence bill, which is often referred to as the LDAN bill, and for his wider dedication to highlighting neurodiversity more generally.
Although I recognise the frustration expressed in today’s motion and the disappointment that our LDAN bill was not announced in the most recent programme for government—I will come back to that—I also want to highlight the Scottish Government’s efforts to ensure that the legislation reflects the voices of those with lived experience. Those quiet voices have always been there, but the breadth of the Scottish Government consultation has inspired our learning disability and neurodiversity communities to speak up and seize the opportunity to contribute and make themselves heard.
With more than 900 responses from individuals, families and stakeholders, we have dared people to hope for a better future, and we absolutely must follow through. We cannot let them down. Their valuable insight has reinforced not only the necessity of the bill but the urgency of the change that it seeks to bring. The LDAN bill is sorely needed, and it has been deeply disheartening for the autism community and all those who have worked tirelessly for its progress that it is not in the programme for government. I share their disappointment.
Although I appreciate that the bill is developing in an evolving landscape alongside the proposed human rights bill and the Care Reform (Scotland) Bill, the focus should remain on creating a rights-based approach that, while linked, is also independent. I would therefore appreciate a clear and strong commitment from the minister today that we will honour our commitment and be clear on when the draft bill will be published.
As many here already know, I mother autistic children, so the issue is deeply personal to me. Many other members of the Scottish Parliament have also touched on how they are directly affected. It is all around us and it permeates our families, our friendships and our communities.
In thinking about young people, I note that, although every child has the right to full-time education, autistic students face overwhelming inequalities. There are challenges with specialist support and underreported use of part-time timetables, and I would appreciate some clarity on those from the minister today. I am interested in what proportion of autistic pupils receive the full-time education that they are entitled to, how accurate the data is that we hold on part-time timetables, and whether that is comparable across Scottish local authorities. Does the minister believe there is a need for greater transparency around the recording of part-time timetables? Is work being done or planned to assess the impact of part-time education on young people’s achievements and on family wellbeing and finances? That is important, because, as we have heard, when an autistic person struggles, their entire family feels the weight of that struggle.
Advocacy should not be just a crisis intervention; it is a vital form of reablement that can prevent further hardship. When families receive expertise and services that are tailored to their needs, the impact is life changing and, ultimately, more cost effective than dealing with the consequences of inadequate support.
A key aspect of the LDAN bill was the proposal to introduce an LDAN commissioner, which is well supported by the consultation feedback. They would drive accountability, champion rights and inspire cultural change. If the minister has not already done so, I encourage her to get in touch with Alan Thompson, the Welsh commissioner for learning disability, perhaps to discuss any reduction in strain on the NHS and mental health services and how the measure has contributed to closing the poverty gap.
Neurodivergent and autistic people are an investment, not a cost. They make our world more innovative, creative and compassionate, and they open doors that lead to a richer, stronger society. I hope the minister can assure us today that the LDAN community can expect not a lap dog but a guard dog with real teeth and a fierce ambition for their future.
17:53
I thank my good friend Daniel Johnson for bringing the debate to light.
Reflecting ahead of it, I was conscious of the great range of my work as an MSP that is considered in the debate and the motion. There are issues relating to casework, constituents seeking diagnosis and medication, facilities, delayed discharge and education. The subject cuts across many issues, as many of the speeches that we have heard so far have made clear.
However, others have referenced the situation in NHS Tayside, and I want to concentrate my remarks on that. The NHS Tayside board papers from February 2025 refer to
“A significant increase in referral rates for Neurodevelopment (ND) assessments and a reduction in specialist ND staff”
and declare that
“The pathway and waiting list is extensive and unmanageable, with no alternative pathway for these children and young people.”
In reaction to that, the health board has agreed that only those children and young people with comorbid mental health difficulty will be accepted by CAMHS, which is effectively a closure of the waiting list. When the situation was presented to łÉČËżěĘÖ, the health board referenced the 400 per cent increase in the number of referrals for neurodevelopmental challenges on the waiting list. My colleague Brian Whittle told me this afternoon that, in his area, the percentage increase has been far higher. We are seeing the same pattern across the country, as I think has been acknowledged.
It is fair to say that members in the Tayside region believed that the situation was not sustainable and that something had to change. At the time, questions were rightly asked about the system that would be put in its place, the amount of clinical input that would be involved in a team-around-the-child approach, and the availability of medication through diagnosis. However, those questions remain unanswered. We also heard the statistic that those on the CAMHS waiting list in Tayside could be waiting 13 to 14 years for treatment.
At First Minister’s question time last week, the First Minister spoke of his delight that, in the period from October to December 2024, 90 per cent of young people referred to CAMHS were seen within 18 weeks. I ask the minister in closing to say how on earth those two things can be true at the same time. It amounts to a statistical contortion. People in Tayside are rightly asking whether the closure of a waiting list is the means by which the waiting list target is being met. That would be doing everybody in the process a disservice, and we must get to the bottom of what is happening. It was right that, in the same question time session, the First Minister expressed concern about the communication around the issue, but substantive questions remain.
This afternoon, I met autism campaigners, who were asked about the issues that they wanted to have raised in the debate. The first voice that chimed mentioned that we still lock up many people with autism across Scotland. Last Friday, I visited a constituent whom I have been representing for years and who is incarcerated in the learning disability unit at Carseview in Dundee. After a delayed discharge of more than five years, he is still waiting in a situation that is deeply inappropriate for his needs.
I also recently visited the locked wards of Strathmartine hospital, which has been condemned by the Mental Welfare Commission for Scotland. In its report, which I have previously mentioned in the chamber, it highlights the hospital’s Dickensian conditions, including rats falling from the roof, infestations in the walls and other conditions that are entirely unacceptable. It is absolutely clear that there is much work to do in this area, and the minister has an awful lot of questions to answer.
17:57
I thank my friend and colleague Daniel Johnson for continuing to shine a light on this issue. The fact that we need to continue to shine that light should bring shame on us all.
It had not been my intention to speak in the debate; instead, I wanted to listen to those speaking today. However, when I was speaking to some of the autism campaigners, I asked their permission to talk about some of the issues that I want to raise, and they gave it to me.
Last week, I met representatives from the Royal College of Psychiatrists and heard about its report. Shockingly, there was, between 2019 and 2021, a rise of up to 800 per cent in referrals for ADHD. At the same time, we have a reduced psychology sector in which, as Jackie Baillie has said, people are hitting burnout and moving to the private sector to get a work-life balance.
I was struck by Elena Whitham’s point about the need for a whole-system, holistic approach, and I will be focusing some of my speech on the societal approach in education. I might well bore members with it, but I will never tire of talking about how we must give kids outlets to express themselves. I raised with the autism campaigners the withdrawal of the ability to be physically active or involved in music, drama or art and how the impact of that on those who are neurodivergent can be much more significant.
In that respect, I remember a couple of issues that my constituents raised with me. In one case, there were a couple of children who loved to do art. They could remain in the mainstream as long as they had quiet time to themselves to do their art. The problems started after that was withdrawn, because they had no outlet for their thoughts and processes.
As I have said before in the chamber, one of the most fulfilling times in my coaching career was when I worked with a couple of children with autism and with foetal alcohol spectrum disorder. It was extraordinarily fulfilling to be involved in the impact that that routine had on their lives.
We need to consider how we structure our education system. Despite what the minister and the Government might say, there is no question but that there has been a reduction in children’s ability to participate in such outlets in schools and communities. When I spoke to the autism campaigners, I learned that that has a more profound impact on people with neurodivergent conditions. We need to consider a whole-system approach and how we ensure that such children can interact with, take part in and be a part of community and society.
I had not thought about getting to my feet in this debate, but I felt compelled to do so. Once again, I thank Daniel Johnson for compelling me with his very powerful speech. We need to make a societal change in this matter across all the portfolios that we look after in the Parliament.
18:02
I am grateful to Daniel Johnson for lodging the motion and allowing us the opportunity to discuss an important topic. I am also grateful to the other members who contributed, many of whom have highlighted their personal experience. It is always powerful when members bring their own personal experience to the issues that we debate in the chamber.
In raising the topic for debate, Mr Johnson brings attention to the disadvantage and structural exclusion that neurodivergent people and people with learning disabilities experience. My work with and for those groups is a key part of my portfolio, but I also believe strongly that we need to change our approach in that area.
The motion that Mr Johnson lodged notes the disappointment that many people have expressed about the lengthened timescales for the LDAN bill. I acknowledge that neurodivergent people and people with learning disabilities have needed to campaign for far too long for the changes that they need. I understand how disappointing and frustrating that is, and I have met many individuals and our partners to express that I share their sense of frustration at the length of time that real change can take.
However, it is important that we recognise how far we have already come. The proposed bill started from a successful campaign by leading charities to highlight the need for greater accountability for those groups of people. From that early starting point, we have built a significant body of work over the past three years, and central to that has been the extensive consultation paper that was produced in partnership with the lived experience advisory panel. I am grateful to all the stakeholders who were involved in designing and responding to the consultation. The high number of responses that we received demonstrates the importance and relevance of the work.
I assure members around the chamber that the Government’s commitment to developing the LDAN bill has not changed. We have made a clear commitment that the work continues to progress and that the next steps will be for us to publish draft provisions with the benefit of the consultation evidence and further targeted engagement in forming our refined proposals.
The bill is, of course, only one piece of the puzzle, and members have rightly raised a number of other points that I wish to address in turn. In education, neurodivergent children benefit from existing protections under the Education (Additional Support for Learning) (Scotland) Act 2004. Local councils have a legal duty to plan and provide support for neurodivergent children. It is important, however, to point out that it is not necessary for children to have a diagnosis to receive the support that they need when they are in school. It is important that I correct the motion, because it is not correct to say that only 6 per cent of teachers are trained to provide support with additional support needs. All teachers undertake ASN training during initial teacher education; indeed, that is a requirement to meet the professional standards for registration with the General Teaching Council for Scotland.
The minister has corrected the motion, but can I just correct her? We are talking about ASN specialist teachers. Will she acknowledge that the number of specialist teachers has decreased by 12 per cent over a period when the number of children with additional support needs has doubled? Will she also acknowledge that, although she has talked us through the process, the reality is that nobody who took part in the consultation wanted to take part in a consultation? What they wanted was outcomes. Will the minister set out what steps the Government will take? The situation is undoubtedly worse than it was when the Government embarked on the process.
I can give you the time back, minister.
As many of the people with whom we have engaged on the LDAN bill are well aware, we are continuing to make progress on the bill. As I have said, we will publish draft proposals before the end of this term of Parliament. We are working on those together. We will hold a series of meetings to discuss them, which we will schedule over the next few months. [Interruption.] I need to make progress, as multiple issues were raised during the debate, and I am keen to respond to them. That said, I am happy to offer to meet the member who sought to intervene at a later date, should his questions not be responded to.
As the Cabinet Secretary for Education and Skills recently set out to Parliament, she will engage with the Auditor General on Audit Scotland’s ASN report.
For children and young people, our national neurodevelopmental specification aims to ensure that children and families can access support and services that meet their needs. That support will often be community or school based. As I have already stated, receipt of support should not be dependent on a formal diagnosis, and I would expect NHS health boards, children’s services and other partners to work together to implement the specification and to provide the support that is required by children and families, which might include assessment, diagnosis or other interventions.
Over the past five years, we have invested ÂŁ65 million in community-based mental health support and services for children and young people and their families, including support for neurodivergent children and young people. We continue to provide ÂŁ16 million a year to local authorities to provide access to school counselling services for all school pupils aged 10 and above.
As for adults, we are aware that there has been a significant increase in the number of neurodivergent people seeking a diagnosis and requiring support. Although that creates challenges for a range of services, we recognise just how important it can be to a person’s wellbeing to receive such a diagnosis and support. Long waits for support are not acceptable. I assure members that the Scottish Government is working closely with local health and social care—[Interruption.] I am sorry—there are several points that I want to respond to, and I have only a couple of minutes left.
We are working with local health and social care bodies to improve access to services and support for neurodivergent people. Last year, we allocated ÂŁ123 million to health boards to improve the quality and delivery of mental health and psychological services, including neurodevelopmental services for adults and for children and young people.
The minister is talking about steps that the Government is taking to improve services, but the services in question have been entirely withdrawn in a number of health board areas. What is the minister’s response to people in Tayside, who are simply being told that there is no service for them and no waiting list to join?
My officials have reached out to all the health board areas that have made such decisions. As I understand it, a process of redesign is under way, because the services are overwhelmed and are unable to respond to the need. A redesign process is going on. Health boards’ communication to people who are on waiting lists has not been good, and I would like that to be improved.
Will the minister give way?
I am sorry, but I really would like to progress. I have a number of issues that I want to get round to, including some of the issues that Mr Marra raised.
We have established the national autism implementation team—or NAIT—which is supporting NHS boards to develop, enhance and redesign existing local adult neurodevelopmental services. In addition to NAIT, we have commissioned NHS Education for Scotland to provide professional learning to healthcare staff, including those involved in diagnosis of ADHD and neurodevelopmental conditions at informed, enhanced, specialist and expert levels.
On community support for autistic adults, we directly invest ÂŁ1 million a year through our autistic adult support fund to deliver such support. Again, I would just highlight that support can be accessed without a formal diagnosis. The Scottish Government also funds Scottish Autism to provide an autism advice line, which is staffed by advisers who are trained and experienced in working with autistic people and their families.
Mr Burnett again invited me to attend the cross-party group on autism. As I outlined in my response to his initial invitation, I will shortly be responding to the Equalities, Human Rights and Civil Justice Committee’s questions as a follow-up to my evidence session, and I have offered to copy the CPG into that response, which I believe will answer many of its questions. Should the committee have further questions, I am more than happy to hear from it again, as I outlined in my response.
It is also important for clarity and for the record that I explain again to Mr Burnett that a number of criteria need to be met before people can be treated under the Mental Health (Care and Treatment) (Scotland) Act 2003. No one in Scotland can be detained simply because they are autistic or have a learning disability. The coming home programme is focused primarily on people who have concluded their period of treatment in hospital and are waiting for discharge, and that does not include people who have been admitted to a state hospital.
Mr Marra mentioned CAMHS waiting lists. CAMHS is a specialist service that provides support for mental health conditions, and it has its own referral criteria, which have been in place for some time. The referral for neurodevelopmental assessments does not go through the CAMHS waiting list. That is why we have been able, through a whole-system approach, to put time, effort and investment into improving the CAMHS waiting list. Some of that methodology will be used to look at the approach to neurodevelopmental assessments, as the same level of intensive effort and a whole-system approach will clearly be required to improve the system. The member is conflating and confusing two different referral pathways.
I also want to point out some of the vital work that is being done outside the proposed LDAN bill, which aims to address the inequalities that the groups experience. The Scottish Government wants people with learning disabilities to live longer and healthier lives, and offering annual health checks is a big step towards fulfilling that ambition. We are fully funding that policy with annual investment of ÂŁ2 million.
Briefly, minister.
Health checks, which are being delivered to thousands of people, are already yielding positive results in identifying unmet health needs and supporting access to the right care and treatment.
Furthermore, on 20 March, I confirmed to Parliament that the Scottish Government will allocate ÂŁ10 million over the next two years to provide an additional 150 changing places toilets across Scotland. I am delighted about that announcement and delighted that we are able to deliver on that promise.
I thank Daniel Johnson for lodging the motion for debate, and I reaffirm my commitment to the proposed learning disabilities, autism and neurodivergence bill. As I have said, I am aware that time constraints mean that I have been unable to respond to every issue that has been raised. I again emphasise that my door is open and I am happy to meet members and to make progress together on the issues.
That concludes the debate.
On a point of order, Deputy Presiding Officer. I know that I am trying your patience, but we have had a pretty robust debate, with members giving compelling and powerful speeches, and the response that we have just heard from the minister is unsatisfactory. I ask for your guidance, under standing orders, on how we, as back-bench members of the Parliament, might bring this issue back to the chamber so that we have more time to examine it in detail and get a fuller—and, I would argue, better—response from the minister, who represents the Scottish Government.
Mr Kerr, you will be well aware that that is not a point of order. You will also be aware of the mechanisms, primarily through your business manager, for arranging for items to be put to the Parliamentary Bureau so that a decision can be taken on debates and so on in the chamber.
Meeting closed at 18:14.Previous
Decision Time