Neurodivergence in Scotland

The Committee is disappointed that neither a Learning Disabilities, Autism and Neurodivergence bill nor draft provisions were brought forward during this session. The Committee appreciates the challenges and complexity inherent in developing this legislation, but the lack of progress is still immensely disappointing both to the Committee and the sector more generally. To allow proper scrutiny, and given the work already completed, the Committee asks that such a bill is introduced at the earliest possible opportunity next session.

The Committee also urges this Scottish Government and the next administration to reflect carefully on the findings of our inquiry in the development of a bill. Moreover, the Committee asks that its successor committee is kept updated on progress on developing a bill.

It is clear to the Committee that there is currently a discrepancy between the policies in place to support neurodivergent people and the lived experience of how those policies are realised. The Committee welcomes the Minister's recognition of a need to recalibrate our systems to respond to that.

The Committee urges the Scottish Government and public authorities to engage with those with lived experience to understand fully how systems are working in practice and how they can be better calibrated to meet the needs of neurodivergent people.

As a country we cannot carry on like this. It is completely unacceptable to maintain a situation where people are taking their lives while they wait for a diagnosis.

The Committee fully recognises that meeting current demand within current structures is not achievable. The Committee is supportive of a needs based approach. However, as it stands, a needs based approach is not working and it is not leading to improved outcomes for neurodivergent people.

Moreover, the Committee is not persuaded that an approach that seeks to move away fundamentally from a diagnosis based approach to a needs based approach is necessarily always in the interests of neurodivergent people.

The Committee recognises that a needs based approach could work for some if it was delivered effectively. At the same time, the Committee strongly believes that there are benefits associated with a diagnosis that cannot be achieved without it. A diagnosis allows an individual to understand themselves better and provides an individual with a community. A diagnosis is necessary too to enable an individual to access what could be life changing medication. A needs based approach cannot be a substitute for a diagnosis.

Getting a diagnosis for a young person early on in life can set them up for the rest of their lives and allow them to thrive in education, the workplace and life more generally. It is essential that we strive to achieve this ambition for all young people.

In supporting an approach that remains focussed on having a diagnosis, we recognise that neither the financial investment, nor the structures, are currently in place to allow individuals to get a diagnosis, and moreover, to get one within a reasonable time period.

We echo the view of the Health, Social Care and Sport Committee that there should be consistent support pathways across all 14 health boards. This includes establishing a National Standard for assessments to guarantee equitable quality of access regardless of region. We would add that these pathways should ensure access to a diagnosis within a reasonable timeframe.

Moreover, the Committee recommends the creation of a long-term strategy and guaranteed long-term investment to support that strategy.

As noted earlier, we echo the support expressed by the Health, Social Care and Sport Committee for national guidelines on assessments. The Committee recommends that as part of any national guidelines, there must be an emphasis on holistic assessments. Given the prevalence of private diagnosis, the Committee urges the Scottish Government to ensure that national guidelines apply to private diagnoses in the same way as they apply to NHS diagnoses.

The Committee notes the Minister's willingness to give "serious consideration" to shared care agreements.

Ideally we should have a system that is predicated on equity of access to assessments for all. Everyone should be able to get access to an assessment in a reasonable time period, irrespective of their financial circumstances. Financial privilege should not allow anyone to obtain a diagnosis more quickly than someone from a less privileged financial background.

However, we are not currently in that position and with long waiting times people are feeling compelled to seek a private diagnosis.

As we heard in evidence, it is not just those who can afford a private diagnosis who are seeking it, but many others who are getting themselves into considerable debt to do so.

In the short-term, while waiting times continue to grow exponentially, it seems inevitable that private assessments will be part of the response to this unprecedented demand for assessments. In these circumstances the Committee urges the Scottish Government to apply that "serious consideration" to shared care agreements, so that those who have felt compelled to seek a private diagnosis, and who have incurred debts to do so, are not then burdened by yet more debt for ongoing medication costs.

The Committee echoes the support expressed by the Health, Social Care and Sport Committee for Healthcare Improvement Scotland, health boards and GPs to work together to address the problems with shared care agreements.

The Committee recognises the challenges around quality assurance in relation to private diagnoses, but urges swift progress on national guidelines to overcome them and ensure that there is a standardisation in assessments across the public and private sector.

The Committee welcomes this recognition of the need to review the implementation of post-diagnostic support. As it stands, it appears to the Committee that post diagnostic support is either unsatisfactory or non-existent.

The Committee asks that its successor committee is kept updated on this work by the Children and Young People's Neurodevelopmental Taskforce. Moreover, this Scottish Government and the next administration must examine post-diagnostic support for adults too.

We urge this Scottish Government and the new administration to move toward post-diagnostic support that is collaborative and not siloed and that is less heavily reliant on the third sector. However, where there is collaboration with the third sector, organisations must be able to rely on funding that is sustainable and on a long-term footing.

Fundamentally, people diagnosed with neurodivergent conditions must be able to access high quality post-diagnostic support irrespective of where they live in Scotland.

The Committee urges this Government and the next administration to provide guidance and leadership to ensure that children are not precluded from the assessments they need as a consequence of them not being believed by gatekeepers such as teachers or GPs.

The Committee calls for a system and culture where far more weight is given to the views of families and where teachers and GPs are less able to dismiss these views.

Alongside greater weight being given to the views of parents, more mandatory training must be given to all those who act as gatekeepers to ensure they have an up to date understanding of neurodevelopmental conditions. While it is to be expected that some will adapt to change more quickly than others it should not be acceptable for some not to adapt at all. When it comes to teachers, for example, there should be an expectation that all teachers understand how to support neurodivergent children.

The Committee welcomes this recognition from the Minister. The Committee calls on the Scottish Government and the next administration to provide leadership to effect cultural change in how we see neurodivergence and how society more generally perceives and values what neurodivergent people can bring to the world.

Although there are perhaps some signs of reducing stigma in the willingness of individuals to seek a diagnosis, that diagnosis continues to be viewed as a deficit. As stated by Dr Lang, we need to move to a society that values and celebrates diversity.

With so many people being seen as neurodivergent, we must move away from a world in which people are encouraged to conform to neurotypical standards and the Committee urges the Scottish Government and the next administration to consider how we progress to such a neuro-affirming society.

The Committee recognises that teachers and schools are facing rising levels of need to support neurodivergent students, without always having the adequate staffing, training or specialist support this requires. It is clear that further work is needed to support schools to understand and navigate this complexity. We therefore recommend that future legislation should place clearer duties on national and local government to strengthen the workforce needed to deliver ASL responsibilities, including national standards to improve teacher training, increased resource and capacity and wider access to specialist ASN professionals.

Moreover, delivering meaningful support for neurodivergent children and young people requires a coordinated, whole system approach around the child, with education working with health, social work and the third sector. A ‘community’ of support services. The Scottish Government and the next administration should consider how schools can access in house, a full range of specialist support, including educational psychologists, occupational therapy, speech and language therapy, and other allied and family support services, so that support is provided earlier, joined up, and consistently available. Consistent and high quality ‘community’ support should follow the young person in their transition from primary to secondary education and then in their transition to adult services.

The Committee suggests that its successor committee and the next administration may wish to explore the experiences of neurodivergent teachers in greater depth. This could help build a clearer picture of how well the system supports them and where improvements are needed.

The Committee has heard that adjustments for neurodivergent pupils are at best inconsistent, short-lived or dependent on individual staff and at worst non-existent, leaving children without the reliable consistent support they need. Schools are obliged to make reasonable adjustments. The Committee urges the Scottish Government and the next administration to give further consideration to how it can be ensured that schools are implementing this requirement. The Committee also recommends that this Scottish Government and the next administration work with the Equality and Human Rights Commission to consider how its technical guidance on the Equality Act for schools can further implementation.

Ultimately, we would urge the Scottish Government and the next administration to provide leadership in a drive toward societal change that is not reliant on reasonable adjustments that enable neurodivergent pupils cope in neurotypical world.

The Committee heard that many of the challenges faced by neurodivergent learners may stem from the structure of schooling itself, including large class sizes, movement between classes, sensory‑intense environments and narrow assessment models, all of which can make inclusion difficult. The Committee urges the Scottish Government and next administration to consider how it might achieve long‑term system redesign to make the education system universally accessible to all pupils.

The Committee recognises stakeholder concerns about communication failures both within schools and between services, which leave children and families without clear or coordinated support.

Communication failures range from the use of ableist and prejudicial language, to communicating in dismissive tones, to a complete lack of communication.

To address this, the Committee recommends stronger joint working between education and health sectors, supported by more reliable internal systems so that information about a child’s needs is shared and acted on consistently. The Scottish Government and the next administration should consider how clearer national protocols, improved guidance and, where appropriate, legislative duties could help ensure public bodies coordinate more effectively.

We recognise the wider shift towards a more neuro‑affirming society and believe this must be reflected more strongly within Scotland’s schools so that diversity in learning is understood as a normal part of human development. The Committee therefore recommends that the Scottish Government embed neuro‑affirming practice through national training and clear leadership expectations, and consider whether duties are needed in future legislation to ensure that practice across the system upholds rights‑based, inclusive values.

The Committee also recommends that the Scottish Government work with professional bodies, including teaching unions, to support a consistent approach that avoids reinforcing stigma, strengthens trust with families and ensures that children’s needs are properly understood and met.

The Committee heard that access to support can vary widely across Scotland. As noted in the section of this report on post-diagnostic support, sometimes support is non-existent. To ensure consistency, the Committee recommends the Scottish Government and the next administration consider establishing national minimum standards for support and improving how data is used to identify inequality, and introduce national oversight. The Committee asks the Scottish Government and the next administration to consider whether such standards should be set out on a statutory footing.

Neurodivergent people can bring so much to the workplace. The Scottish Government and the next administration must provide leadership to ensure that the strengths neurodivergent people bring to the workplace can be recognised and are not looked at through a deficit lens.

The Committee urges this Government and the next administration to work with the UK Government on Access to Work to consider how neurodivergent people can be better supported into and in employment. The Committee also urges the Scottish Government and the next administration to consider how it can, within devolved powers, encourage employers to consider how they can better consider the needs of neurodivergent people.

Members were alarmed by the stories of discrimination in the workplace that were shared with them.

A diagnosis should not be a pre-requisite for support in the workplace, but at the same time, the evidence the Committee received emphasised the importance of getting a diagnosis.

However, the Committee urges the Scottish Government and the next administration to provide leadership to ensure support in the workplace is not conditional on a diagnosis and people are not doubted and disbelieved.

Furthermore, we ask that the Scottish Government work with employers to ensure that mechanisms are in place for redress where people have not been able to obtain support.

The Committee recognises that support for neurodivergent people will vary from workplace to workplace. Some workplaces will clearly already be adopting more neuro-affirming policies than others. In particular, the Committee recognises that smaller workplaces may face greater challenges to adopting neuro-affirming policies. However, all workplaces must be environments in which neurodivergent people feel supported and where they can thrive.

We note the Minister's encouragement to workplaces to adopt practices which are consistent, fair and inclusive. The Committee is not convinced, however, that encouragement alone will be sufficient to effect a cultural shift. The Committee encourages the Scottish Government and the next administration to consider what could be put in place to require work places to adopt practices which are consistent, fair and inclusive as well as what support smaller workplaces for example may need to put these practices in place.

The Committee found the case for universal design that benefits everyone to be compelling. The Committee urges the Scottish Government and the next administration to consider how such an approach could be implemented.

As noted earlier in the report, it is impossible to separate education from the workplace and everything must be done to ensure that the experience of education is a positive and fulfilling one to ensure neurodivergent individuals can thrive in the workplace. It must also be ensured that people are supported as they transition out of education and that they do not fall through the cracks at this juncture.

The Committee recognises that supporting a neurodivergent person in the criminal justice system is immensely challenging, particularly when that person hasn't been previously diagnosed with a neurodivergent condition.

Nonetheless the Committee urges the Scottish Government and the next administration to work with criminal justice system to consider how data collection could be improved and in turn the quality and effectiveness of support provided to neurodivergent individuals in the workplace also improved.

The Committee also asks that its successor committee is kept updated on the progress in the development of the five principles for responding to communication support needs in the justice system as well as the development of training and accessible materials and encourages changes to be made where necessary.

The Committee urges the Scottish Government and the next administration to work with the National Autism Implementation Team to ensure that high‑quality training informed by lived experience is provided across justice agencies.

Training will, however, only go so far in transforming the experience of neurodivergent people in the criminal justice system and the Scottish Government and next administration must work with justice agencies to effect a wider culture shift.

There must be a strong understanding of neurodivergence across the justice system. People should not find themselves in the criminal justice system as a consequence of a failure to understand neurodiversity and distress. At the same time, it is not acceptable that victims of crime are being doubted as a consequence of a failure to understand neurodivergence.

As has been previously recognised, third sector organisations play a key role in supporting the delivery of support to neurodivergent people. This is clearly the case again in the context of their engagement with the criminal justice system. As the Committee previously recommended, the Scottish Government and the next administration must seek to ensure that third sector organisations have sustainable long-term funding to enable them to provide effective support to neurodivergent people in the criminal justice system. In addition, it should be ensured that the invaluable contribution that third sector organisations make is recognised and their insights and views are given equal weight to those of other bodies.

The Committee recognises the significant challenge presented by the unprecedented numbers of people who have either been diagnosed or are seeking a diagnosis for a neurodivergent condition.

The challenges that this presents are significant and it is vital that the next administration prioritise this issue next session. The next administration must work closely with those with those with those with lived experience to develop legislative and non-legislative responses to these challenges.

In this inquiry the Committee has focussed on the experience of neurodivergent people in education, the workplace and the criminal justice system. However, the Committee has found itself also examining issues around diagnosis and post diagnostic support as well as broader societal issues.

In doing so, it has become apparent that there is a significant gap between what the Committee was told about the policies in place to support neurodivergent people and the lived experience of how those policies are realised. The next administration needs to speak to neurodivergent individuals to understand the extent of this discrepancy and how it can be overcome.

Across this inquiry the Committee has heard about the importance of a diagnosis. The Committee recognises the value of a needs based approach, but this cannot be a replacement for a diagnosis. This Scottish Government and the next administration must develop a long term strategy with long term funding to ensure we have the workforce needed to be able to respond to the demand for diagnoses.

We cannot rely on private diagnoses to respond to these challenges, but in the short-term while we try to respond to the level demand, it seems inevitable that this will be part of the response. We urge the Scottish Government to bring forward national guidelines to ensure that there is consistency in assessments. With that consistency a private diagnosis should be more reliable, which should in turn open up the possibility of shared care agreements and access to life changing medication on the NHS.

The next administration must provide leadership too to respond to the barriers, stigma and discrimination faced by neurodivergent people too. Training will be critical to improving understanding of neurodevelopment conditions. This must be mandatory and led by lived experience.

We need, however, fundamental changes to society. Having a neurodivergent condition should not be seen as a deficit. As noted in this report 43 per cent of children in Scottish schools have some sort of additional support need. We can not simply continue to exist in a world where adjustments and support are put in place to enable people to conform to neurotypical norms.

The Committee urges the next administration to respond to this without delay. Early, coordinated and neuro-affirming support is not only a matter of rights, dignity and equality, it is also a matter of social and economic resilience. When needs are met early, children are more likely to remain in education, families are less likely to be pushed into crisis, parents are better able to remain in work, and young people are better supported to move into higher education, training or employment. When support comes too late, the costs are simply displaced elsewhere. For example, in healthcare, with worsening mental and physical wellbeing, family hardship, lost workforce participation and, in some cases, later contact with the criminal justice system. We urge the Scottish Government and the next Administration to work together with the public sector, the third sector and neurodivergent individuals to develop a collaborative response to consider how to ensure we can create a neuro-affirming society where everyone can thrive.

Neuro-affirming practice should not be treated as optional good practice, but as a core part of effective public service design. A system that understands distress, communication and difference properly is better able to intervene early, reduce harm, and support better outcomes across education, health, employment and justice.

In the short time we have had this session we have identified key areas that need to be pursued next session. Change will not happen, however, without much further work. We urge the next administration to reflect carefully on this report and prioritise the issues it raises next session. The Committee also urges its successor committee to build on the work of this inquiry and hold the next administration to account for responding to the needs of neurodivergent people in Scotland.