Meeting of the Parliament

Meeting date: Wednesday, April 26, 2023

Official Report 1092KB pdf

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Celebrating Autism Acceptance

The final item of business today is a members’ business debate on motion S6M-08250, in the name of Stephanie Callaghan, on celebrating autism acceptance. The debate will be concluded without any question being put. I invite any members who wish to participate to press their request-to-speak buttons now.

Motion debated,

That the Parliament acknowledges both World Autism Acceptance Week, which runs from 27 March to 2 April 2023, and World Autism Month, which is celebrated throughout April, and their aim to raise awareness of autism, educate the public and make the world a friendly place for autistic people; notes that the National Autistic Society (NAS) theme for World Autism Acceptance Week 2023 is “colour”, and welcomes the fundraising events, including an in-person colour walk and colour virtual challenge, to support services; understands that more than one in 100 people in Scotland are autistic, and believes that accepting, promoting and celebrating the skills, thoughts, ideas and talents of autistic people supports those individuals to reach their full potential, while bringing positive benefits for wider society; further understands that the report, Closing the Accountability Gap, published by NAS and Scottish Autism, found that there is still a significant gap in the provision and access of appropriate support for autistic people across services such as schools, employment and healthcare; commends NAS and Scottish Autism for what it considers their continuous campaigning to promote autistic people’s rights and create a fairer and more accepting society, and in championing quality autism-specific services across Scotland, as well as their work to establish a Learning Disabilities, Autism and Neurodiversity Commissioner, and acknowledges the valuable work of local autism groups, such as HOPE for Autism and the Autism Resource Coordination Hub (ARCH) based in Lanarkshire, that work in partnership with autistic people.

17:36  

I am absolutely delighted to be leading this debate during autism acceptance month.

I thank colleagues for coming together to celebrate the rich talents, strengths and contribution of the fantastic autistic people in our lives. Most of all, I want to thank the National Autistic Society—members of which are up there at the back of the public gallery this evening—for continually advocating for autistic people’s rights. For more than 25 years, NAS has provided specialised care and support to the autistic community, and I am sure that we can all agree that that is something that is well worth celebrating.

Every time that we talk about autism, we improve awareness and promote understanding, but that does not quite cut it. What autistic people really need is our acceptance—they need to be accepted, valued and respected exactly as they are and without pressure to fit into other people’s idea of normal. Together, we must create a society that works for autistic people, not against them.

The National Autistic Society tells us that more than one in every 100 people in Scotland has an autism diagnosis—and that is forgetting the people who are not yet diagnosed. However, if you have met one autistic person, you have met only one autistic person. It is time to banish the outdated stereotypes and incorrect assumptions that limit society’s understanding of autism and also to put more focus on early diagnosis.

Records show that, across Scotland, waiting times for an autism diagnosis can be lengthy, with one person waiting more than four years. Clearly, that is not good enough. However, support need not wait for diagnosis; it can start wherever there is a need.

There is a particular issue around women and girls, with research showing that they often struggle in silence. Too often, females who query a possible autism diagnosis are dismissed, because they excel at mimicking others and masking the symptoms. It is suggested instead that they are just naturally shy or anxious, or that other mental health issues are to blame. However, as we know, women in our society are often fobbed off, so it probably does not come as a huge surprise that autism diagnostic tools are focused on the common traits that we see in men and boys, which means that female symptoms are easily missed—even by professionals.

Last year, the National Autistic Society launched a brilliant campaign called “Now I Know”, which highlights the immense struggles and the liberating experiences of women who receive a late diagnosis. One such woman is Zara, whose diagnosis has allowed her to become comfortable with her true self. She has been told that, since she had her autism diagnosis, she has seemed more autistic. However, behind the masking, Zara has always been that way. The difference is that, today, she is proud of who she is, and she does not try to hide those autistic traits.

Autistic children and young people can also struggle to access their right to education. In 2018, the National Autistic Society, Scottish Autism and Children in Scotland released their joint report entitled “Not included, not engaged, not involved: A report on the experiences of autistic children missing school”. The report highlights the sensory challenges that schools bring—bright lights, loud noises, chaos and uncertainty—and states that they can create the perfect storm for sensory overload in autistic pupils.

I will give members an example that illustrates that. During his primary 7 year, my autistic son delivered a presentation to his class in which he asked his classmates to sit in silence for one whole minute, and then he asked about the sounds that they heard. They had noticed birds tweeting, tummies rumbling, clocks ticking and all the sounds that we do not notice but which some autistic people are constantly aware of. He pointed out to his classmates how those noises can make it hard to listen, to do maths and to write essays, and how exhausting it can be to concentrate and focus on the things that he needs to focus on. His classmates really understood. I encourage everyone here to try out that minute’s silence, become aware of all of those noises, and then imagine them constantly ringing in their ears every day as they try to focus and concentrate.

The “Not included, not engaged, not involved” report also tells us that one in three parents says that their autistic child has been unlawfully excluded from a school and that young people can find themselves spending vital education time away from classroom activities. Sometimes, teachers lack key training or resources that are needed to support autistic pupils in the classroom.

Although autistic behaviours are often still misunderstood as bad behaviour, understanding is improving. However, it is still too common for parents to feel blamed. Too many hear, “Your child is disruptive. Are there issues at home?” That said, I recently had an encouraging chat with a friend about her child’s positive experience of the education system. She said, “My son’s school put in place flexi schooling and allowed him full autonomy over his learning. Teachers let him choose how to mix remote and in-person learning, and he achieved an A in advanced higher English and then went on to study an HND at college. Now, he is completing a degree at Strathclyde uni. They created an environment where my son could thrive.”

We need to see much more of that, and it is up to all of us to ensure that that type of positive strategy becomes the new normal.

Recently, I visited a couple of local groups: the autism resource co-ordination hub—ARCH—in Hamilton and Hope for Autism in Airdrie. I learned from them about the programmes that they are running to support autistic communities. ARCH has co-designed its model and services with autistic people and families, and Hope for Autism has an autism team developing and delivering training for families and professionals. It is vital that we invest in and learn from such organisations so that we can build available post-diagnostic support that really allows autistic people to excel.

However, we have come a long way, and the Scottish Government’s forthcoming learning disability, autism and neurodiversity bill, which will establish a learning disability, autism and neurodiversity commissioner, will be a world first. It will be a landmark legislative move to benefit autistic people. I am delighted that the First Minister is committed to introducing the bill by the end of this parliamentary session, and I encourage the minister to pledge her commitment today, too, and to ensure that autistic voices remain central and at the core of policy making in our Scottish Parliament.

I thank all the autistic people who light up our lives. I will finish with the words of the autistic author Paul Isaacs:

“Do not fear people with Autism, embrace them, Do not spite people with Autism unite them, Do not deny people with Autism accept them for then their abilities will shine.”

17:44  

I thank Stephanie Callaghan for lodging the motion and congratulate her on her extremely powerful speech.

It is a pleasure to speak in this debate concerning the indispensable work that has been done for individuals in Scotland living with autism. I am also happy to see the Parliament acknowledge world autism acceptance week and world autism month, which have been celebrated to raise public awareness of autism and aid in creating a more welcoming world for autistic individuals.

Over the course of my career as an MSP, I have been able to work closely with a wide array of colleagues and organisations to help make Scotland more accommodating to the needs of autistic people. Personally, I have been contacted by many parents and family members of people with autism in Glasgow, who have asked that more be done to support their loved ones’ needs.

In my capacity as an MSP, I have sponsored numerous parliamentary motions on subjects relating to autism, including motions on the Glasgow founder of educational Dekko Comics winning a national award and Glasgow mums launching a playgroup for kids with autism. Additionally, I have had the honour of attending events that have been held by groups at the Parliament, such as the event to celebrate 25 years of the National Autistic Society Scotland and an event to mark Scottish Autism’s 50-year anniversary. Furthermore, before the Covid-19 pandemic, in collaboration with the National Autistic Society, I called on the Scottish Government to introduce a three-month national health service waiting time target for autistic patients. NAS has found that 27 per cent of patients were misdiagnosed and that 42 per cent indicated that the process had been stressful. The move was designed to expedite the autism diagnosis process and align it with measures that already existed in the rest of the United Kingdom.

Aside from various roles in which I have served, being a member of the cross-party group on autism has been particularly rewarding. During the pandemic, I was delighted to see the launch of its report, “The accountability gap”, which reviewed the Scottish Government’s strategy for autism.

After eight years of the Government’s strategy being implemented, it has become evident—through the statements of most of the hundreds of individuals who participated in our review—that, although progress has been made, obstacles remain, particularly in relation to employment and diagnosis support.

Among the recommendations of our report, I supported the creation of a new commissioner to safeguard the rights of autistic people in Scotland, which would facilitate bridging the gap between advocacy and policy making. I believe that that will help to address on-going obstacles for autistic people, as 72 per cent felt that they lacked sufficient support, 78 per cent stated that they had difficulty in securing local support, and 69 per cent believed that greater support would help with feelings of isolation.

That leads me to highlight the potential of the forthcoming learning disability, autism and neurodiversity bill. The bill, which will establish a learning disability, autism and neurodiversity commissioner, will open to public consultation in the latter half of this year. I welcome increased engagement between the Scottish Parliament and organisations that perform invaluable work on behalf of autistic individuals. More specifically, I encourage more robust dialogue with the groups that I have been privileged to work with, such as Scottish Autism.

Like Stephanie Callaghan, I know that everyone in the chamber will join me in working tirelessly to address the continuing challenges that are endured by people with autism.

17:48  

I thank Stephanie Callaghan for bringing this important debate to the chamber. On behalf of Scottish Labour, I, too, welcome world autism acceptance week and all the work in Scotland that is linked to world autism month, which is happening throughout April.

We know that autistic and other neurodivergent people often find themselves excluded from life opportunities and unable to access the support to which they are entitled. Until 2022, the focus of this time of year was world autism awareness. The move to focus on acceptance occurred as a result of the belief that, although, thanks to the campaigning of many people, there was an increased awareness, that was not accompanied by the better understanding of autism that Stephanie Callaghan talked about, or the systemic change that promotes inclusion and acceptance in the long term—those elements are an important part of the work that needs to be done. That is a fair point, and it is worth repeating that we need to think about what changes we can make in society to promote inclusion and that long-term acceptance.

In my life before coming to this place—there was life before this place—I was lucky to meet and work with many people with autism. In that role, I saw at first hand some of the barriers that people and their families face, but I stress that I also saw solutions and the potential avenues that are available to support people with autism and their families.

I thank the National Autistic Society for its very helpful briefing. We know that many autistic people and families face barriers to acceptance and supports in a wide range of everyday settings. People have spoken about school settings that do not have adequate facilities to support autistic learners. In social care, supports are often not forthcoming until a person is in crisis, which is totally the wrong thing for people with autism. It would be remiss of me not to say that the crisis in social care is hugely affecting the support that is available for people with autism and, if we address that crisis, that will help. Providing such support is a professional role, and we should see it as that.

As I have heard many times from families, advocacy services are really important so that people do not reach the crisis point that causes so many problems. As we heard, accommodation affects people with autism, and many people are trapped in the wrong settings, which does not help them. With regard to healthcare, we have heard from members that people have challenges in getting their diagnosis and, perhaps because of that, the help and understanding that they need within health services.

It is really important to me that there are meaningful opportunities in the job market and in other areas, so we must equip employers to support people. In addition, we must understand what happens as people get older, so we need research to look at that.

As people know, for me, a fairer society is one that prioritises health and, in the chamber, we often talk about that. Physical, mental, social and economic health are all crucial aspects that we want for ourselves, so we want them for other people as well.

I am aware of time, but another interesting point is that we estimate that about 56,000 people in Scotland are living with autism, but an additional number of people need support. There are around 700,000 people for whom autism and/or a learning disability is part of their daily life, and those complexities would be helped if we had better understanding.

In my concluding remarks, I will talk about the learning disability, autism and neurodiversity bill and the creation of a commissioner. I was lucky enough to visit a group in Catrine in Ayrshire, in my region, where there is a very compassionate group of staff. They spoke to me about how worth while that work would be and how important it is to get in there. I ask the minister to give us some idea of a timeframe for that work, as that would be very helpful for people who are living with autism.

17:53  

I thank and congratulate Stephanie Callaghan for securing this debate and I wish everyone a happy autism awareness month. When I saw that I had the opportunity to talk about autism, I was particularly enthused and then quite overwhelmed because, as an autistic woman who has autistic children, I have much to say on the subject, and it is really hard to condense it all into four minutes.

I have been very open about my journey into politics, which happened in part because of my lived experience as a parent of autistic children—the barriers, gatekeeping and negative judgmental attitudes drove my passion for justice in this area. When I was first elected as a councillor in 2017, I was inundated with constituents’ issues regarding their autistic children’s care in health, education, and transitions to workplaces and higher education. Six years on, in my new role, I still deal with many of the same challenges, and I am in no doubt that there is often a postcode lottery for families when it comes to what support they get, but it also depends on the attitudes and training of the individuals that they come across on their journey.

I do not want to be completely doom and gloom on the subject, but we have not got things right for Scotland’s autistic community. I accept that there are many hard-working charities, organisations, schools, individuals and healthcare support workers, and I am extremely grateful for them but, overall, our society and institutions are in dire need of radical change and of a cohesive movement that will seek a meaningful societal shift in acceptance.

Like many others living with, or affected by, autism, I was really pleased to see the manifesto commitment to bring a learning disabilities, neurodiversity and autism bill to Parliament and to create a commissioner to oversee work in the area. I place on record my gratitude for the new First Minister’s assurance that the bill will be introduced by the end of this session of Parliament.

I am grateful to the National Autistic Society for all the work that it has done. The society has collaborated with me many times and it is fantastic to see all the work that it does in Scotland. I am also grateful to the society for the briefing and statistics that it provided for this debate.

In meeting key people over the years, I have heard a few times that diagnosis is not necessary. It is therefore hard to believe that we can have reliable or accurate statistics if we dissuade people from diagnosis and if there is reluctance or gatekeeping throughout our services. Oftentimes, unless a person displays obviously autistic traits, or is an inconvenience to certain institutions, they will not be diagnosed. High-masking autistic women are too often completely unnoticed, due to societal pressures to perform in a socially acceptable way, and are therefore often dismissed when they seek help.

I could speak for hours about the vulnerabilities of autistic women. The fact that they are three times more likely to be sexually assaulted than non-autistic women could lead to a whole debate in itself, as could the comorbidities that often come with autism and neurodiversity. Those include, but are not limited to, eating disorders, obesity, anxiety, depression, connective tissue disorders, gastrointestinal conditions, heart conditions and many more. The life expectancy of someone with autism is, on average, 16 years less than that of their non-autistic peers—a figure that should sober us all.

I met with Marion McLaughlin, the CEO of Autism Understanding Scotland, an autistic-led charity based in Aberdeen that supports autistic people, their families, and professionals across the north-east and Shetland. The charity does an incredible job and I hope that we can ensure that organisations such as that, and the National Autistic Society, are taken along on the journey to make Scotland a more accepting place. It is vital that we support those services.

I have hope for the future of Scotland’s autistic community, but that hope comes with many conditions. I voice my gratitude to those who make the difference and for the opportunity to speak openly on this subject.

17:58  

I begin by thanking and paying tribute to Stephanie Callaghan for securing the debate and Karen Adam for her really valuable contribution. I also pay tribute to the National Autistic Society and Scottish Autism for the work that they do, especially in advocating for individuals across Scotland. I have had meetings with both organisations during my time as an MSP, and I thank them for their work.

The motion for the debate includes a very important sentence, which is that we should

“make the world a friendly place for autistic people”.

We have not done enough to do that. Our public services, which we have the opportunity to shape and improve, should look at how they can do more to improve outcomes, especially for people who have not been able to achieve a diagnosis. Stephanie Callaghan was right to say that, in this day and age, it is completely unacceptable that it can take four years to reach a diagnosis. I hope that the Scottish Government will use the debate to look at the potential to reform diagnosis across our services.

For some time, I have been campaigning with parents in my Lothian region on the fight that they have had to face, after having achieved a diagnosis for autism, to have their child referred for an attention deficit hyperactivity disorder assessment, which is not routinely offered. That has to change.

I have supported a family with two boys who were diagnosed with autism by NHS Lothian some years ago. They had to watch their boys struggle to function at school and in society for up to six years before going private to seek an ADHD assessment. Both boys were diagnosed with ADHD and given the necessary support and medication. That has transformed their lives, as well as their family’s life. Given that 50 to 70 per cent of people with autism have co-morbidities that can include ADHD, it would make sense for those who meet the diagnosis criteria for autism to be routinely referred for an ADHD assessment.

I understand that NHS Lothian is developing a neurodevelopmental pathway. I welcome that and have been calling for it. I have written to previous mental health ministers and social care ministers about the issue, because we need a Scotland-wide solution. I hope that the minister will agree to meet me and other campaigners to discuss the issue, because there is an opportunity to fix it for families. I understand that ministers will have concerns about new and additional referrals to specialists, but I want to make sure that we address the issue, because proper diagnosis is needed for young people with ADHD and/or autism. That is so important to a young person’s development, and we as a country are not getting it right. I hope that the minister will comment on that in her closing speech.

In addition, two key bills are going through the Parliament: the learning disability, autism and neurodiversity bill and the Children (Care and Justice) (Scotland) Bill, both of which will, I hope, present an opportunity for cross-party working.

I have many concerns about how professionals respond to children with autism and their behaviours. That needs to be ironed out in the Children (Care and Justice) (Scotland) Bill when it comes to recording incidents, training for individuals and how we have built a system that often escalates how children are responded to. Across the Parliament, we need to look at de-escalation and at the training that we provide to individuals.

The debate has been useful. There is lots of work to do. Many members, from all parties, want to see real and positive change. I hope that, in future years, when we have other debates on the subject, we can genuinely say that we have worked to make Scotland a friendly place for autistic people.

18:02  

I thank Stephanie Callaghan and all the members who have spoken in the debate for their valuable contributions. I welcome the opportunity to respond to the points that have been made and to highlight the role of the Scottish Government in improving the lives of autistic people, including through our approach to promoting wider acceptance of autism and neurodivergent people.

Reducing the stigma that autistic people face and promoting better understanding are key features of our “Learning/Intellectual Disability and Autism Towards Transformation” plan. The plan sets out the actions that are needed to shape support services and attitudes in order to ensure that the human rights of autistic people and people with learning disabilities are respected and protected.

This year, the Scottish Government marked world autism acceptance week by launching a new e-book on the Different Minds website. It was written and created in partnership with autistic adults and gives an insight into the differences between autistic and non-autistic communication styles. It highlights the positive message that we all communicate differently and that that is okay.

During the week beginning 27 March, members will have seen some of the posts on social media, which were shared further through stakeholder networks and the partnerships that we have developed with services and companies across Scotland. Our Different Minds campaign increased awareness of autism through TV advertisements, which were shown repeatedly in 2020 and again in 2022. That puts autism at the forefront of people’s minds, builds understanding and breaks down misconceptions, stereotypes and stigma.

The Different Minds campaign continues to highlight the differences via the website, which was designed with autistic people, shares their stories and experiences in their own words and busts myths that surround autism in real and impactful ways.

I would like to outline some of the work that the Government has brought forward in the past few years. Over the past two years, the fund that supported the Different Minds campaign has been given additional investment of £800,000, which has enabled organisations to work with employers to provide the right adjustments and support to allow autistic employees to bring their skills to the workplace.

To date, we have invested £2 million in piloting post-diagnostic support for autistic adults and young people through a number of third sector charities. Our focus on post-diagnostic support has helped hundreds of newly diagnosed autistic people to find self-understanding through a range of tailored supports.

We fund the national autism implementation team to work with health and social care partnerships and NHS boards to focus on improving and developing diagnostic services—a common theme in all the contributions to tonight’s debate. The NAIT has also worked in partnership with four HSCPs to trial support and diagnosis pathways for adults with autism and ADHD. That partnership is supported by £650,000 of funding. The report was published in March 2023, and we accepted all the recommendations to take this work forward.

That work complements our approach to neurodevelopmental pathways for children and young people. In 2021-22, we provided NHS boards with funding of £3.06 million to build capacity to support the implementation of the neurodevelopmental specification.

In 2022-23, we allocated funding of £32 million via the mental health outcomes framework to improve the quality and delivery of mental health and psychological services for all. The priorities include improvements in child and adolescent mental health services, psychological therapies, eating disorder services and neurodevelopmental services.

We published the supported employment review in September 2022, and we are considering the recommendations to support people with disabilities or other disadvantaged groups to secure and maintain paid employment.

I didnae really want to interrupt the minister’s speech, but I am thinking about a place in Dumfries that is good at supporting people with autism into employment. The Usual Place does a great job in supporting people into work and long-term employment. Does the minister agree that that is a good example of something that we should support? She might want to come and visit Dumfries some time down the line.

As the member knows, I am always delighted to get down to Dumfries. There is a lot around the country to celebrate but, as we have heard, there is also still a lot of work to do. That is why, in our 2021 programme for government, the Scottish Government committed to introducing a learning disability, autism and neurodiversity bill. The bill will ensure that the rights of autistic people, people with learning disabilities and other neurodivergent people are respected and protected.

Initial scoping work for the bill was published in February, and we have now formed three panels, which include the voices of practitioners, stakeholders and those with lived experience, to further develop the bill. More than 260 people applied to our lived experience panel, and 27 individuals are now bringing experience, energy and passion to the development of the consultation on the bill.

I am afraid that I cannot give Carol Mochan assurances on the timing of the bill, because so much of that lies outwith my control as minister. However, I assure her that the Government is still committed to it and still working on it, and we will keep the community well informed as we continue with the work.

We welcome the report “Closing the Accountability Gap”, which was published by the National Autistic Society and Scottish Autism in conjunction with 2,000 autistic people and their families and carers. The report shares the view that a commissioner is required to champion the learning disability, autism and neurodiversity bill. We are, however, aware that that view is not shared by everyone at this stage, which is why we need to consult on the options, including the option of appointing a commissioner or commission.

I want to respond to some of the points that were made during the debate. Stephanie Callaghan and Karen Adam were absolutely right to raise the issue of masking and the additional challenges that autistic women and girls face. We work with the Scottish Women’s Autism Network to support its work in that area.

I would be more than happy to meet Miles Briggs and campaigners to hear what they need the Government to do and what changes they think are required. I cannot guarantee that I will be able to commit to a timeline for action, but I am certainly more than happy to meet and listen.

There is a challenge with employment. We know that employment rates among autistic people are really low, and we need to tackle those inequalities, not just to improve the quality of life that autistic people experience but to help Scotland’s economic performance. The employment rate for autistic adults in Scotland is about 16 per cent. In comparison, the national employment rate is 73 per cent, so it is a no-brainer that we need to tackle that disparity, and we are tackling it through our fair work first policy and by implementing the recommendations of our review of supported employment and individual placement and support.

I realise that I have run out of time, as I often do—I apologise, Presiding Officer. To sum up, I thank Stephanie Callaghan again for highlighting these important issues. Autism acceptance week sets out to raise the profile of autism, and it has succeeded in bringing us all together today. I am committed to working in partnership with the Parliament and with our stakeholders to make Scotland an accepting and inclusive place, where we welcome and celebrate difference and realise potential. It is crucial that we are informed by neurodivergent people, including autistic people, about their needs so that they can have real choice and freedom in how they live their lives. As I settle into my new role, I look forward to meeting autistic people and other neurodivergent people in the coming weeks and months and to listening to their experiences and ideas.

Meeting closed at 18:11.