August 2025. We submitted a response to the Scottish Parliament’s Health, Social Care and Sport Committee’s inquiry into diagnositic pathways and support for people with Attention Deficit Hyperactivity Disorder and Autistic Spectrum Disorder.

We welcome this inquiry and are pleased to see that children and young people have not been excluded from its scope. All too often, children and the services which support them are considered entirely separate from adult services. Yet every autistic adult and every adult with ADHD was once an autistic child or a child with ADHD – even if they were only diagnosed in adulthood. This has resulted in unsatisfactory and abrupt transitions between services described in evidence to the Education Children and Young People Committee when it considered the Disabled Children and Young People (Transition to Adulthood) (Scotland) Bill.[1]

Article 23 of the UNCRC places an obligation on the state to ensure that any:

“mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community.”

In 2006, the UN Committee on the Rights of the Child CRC, produced a General Comment on the rights of children with disabilities. In this, they adopted Article 1 (2) of the UNCRPD as their definition of disability. This states:

“Persons with disabilities include those who have long-term physical, mental, intellectual, or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”[2]

The State’s duties to disabled children extend beyond education to all aspects of their lives and include the obligation in Article 24 of the UNCRC to support children to have:

“the highest attainable standard of health”

This includes access to timely diagnosis and to ongoing support where necessary, for example mental health support, speech and language therapy and, where appropriate, medication.

Access to diagnosis

Long waiting times, often measured in years, can have a considerable impact on a child’s education, health and life chances. We acknowledge that Children and Adult Mental Health Services (CAMHS) were already under significant pressure before the pandemic and although wait times have improved, for acute services, there are currently long delays for assessment and diagnosis of autism and ADHD. The impact of a delay must be understood in the context of how time passes for children. A three year wait represents half of their primary or secondary schooling. Yet the current situation is that, in the absence of a significant mental health condition, many children in at least one health board area (but likely others) are not able to access assessments and diagnosis through the NHS at this time.

We therefore welcome the exploration of alternative diagnostic routes, reflecting the already multi-disciplinary approach to assessments and the developing understanding of autism as demonstrated by recent updates to the International Classification of Diseases[3] and the conceptualisation of autism as a developmental disorder rather than a mental disorder.

Our hope is that alternative routes might improve Scotland’s ability to meet children and young people’s right to timely diagnosis.

We are aware that some families make the choice to seek a private diagnosis for their child and that this is not always accepted by schools as the basis for requesting adjustments or additional support. Any decision whether or not to accept a diagnosis made by an appropriate medical practitioner should be evidence based and consider the individual child’s rights and best interests. It is not appropriate to have a blanket ban in place, particularly in the context of the lack (or at least effective lack) of access to diagnosis via the NHS.

We are also aware that there can be issues when ADHD medication is prescribed following a private diagnosis.[4] Where a diagnosis has been made by an appropriate medical professional, any decision about treatment thereafter should be made on an individual basis. Where NHS surgeries or boards have blanket policies which do not accept private diagnosis, this can act as a barrier to children receiving appropriate and timely care. Once diagnosed[5], a child’s ongoing right to the best attainable standard of health and the State’s duties to them are not altered by a choice made by their parent(s) to seek private diagnosis.

Impact of diagnosis on education

We contributed to the Education, Children and Young People’s Committee’s inquiry into additional support needs in 2024. In our submission we highlighted the barriers children and young people with ADHD, autistic spectrum disorders and other neurodivergent conditions experience within education settings.[6] The Committee heard evidence from parents of children receiving inappropriate, or in some cases little or no support, until a formal diagnosis was made.[7]

In March this year, we published “This is our lives, it matters a lot” which placed children’s views in the context of children’s right to an education under Article 28 and 29. In the engagement with children and young people which informed the report, the issue of access to diagnosis was raised by a number of children and young people. We will draw on these views as part of this submission

Whilst the Scottish government policy makes it clear that a diagnosis should not be needed to access additional support for learning, many children reported that they often did not receive appropriate support without one. We also heard that children sometimes received inappropriate responses to their needs due to a lack of diagnosis.[8]

Children with ADHD and ASD often face greater challenges adapting to the secondary environment – dealing with noisy crowded spaces, a more formal teaching style with moves between classes and teachers for different subjects. In contrast to primary school, teachers and pupils spend less time together and cannot form the same supportive relationships.

Diagnosis may help to ensure that the child is receiving the right support. Understanding the cause of a child’s additional support needs can provide insight into types of support which would best help them. Diagnosis potentially provides options for treatment either of the condition or any co-morbidities – for example an autistic child may benefit from more specialised counselling services (though these are often not readily available).

The Scottish Qualifications Authority (SQA) sets out strict criteria for examination centres (schools and colleges) putting in place Alternative Assessment Arrangements for disabled candidates.[9] Although the guidance does not explicitly require diagnosis, its result is that children with a formal diagnosis are more likely to satisfy these criteria. This is particularly important where a child has changed schools or moved from school to college. Likewise, children and young people are likely to find it easier to access support at university with a formal diagnosis.

Conclusion

Whilst we agree it should not be necessary to have a formal diagnosis of ADHD or Autism to receive support, our view is that access to diagnosis can be an important factor in ensuring children’s right to the highest attainable standard of health. In the context of education, diagnosis can provide important context to ensure that children and young people receive support which is appropriate to their individual needs. We therefore welcome continued exploration of alternative assessment processes, given the current services’ inability to delivery timely access to diagnosis for many children and young people.

Children and young people routinely tell our office about how inconsistently they experience support in their school settings. Regardless of diagnosis, there is urgent need to ensure ongoing workforce development across the education sector in relation to additional support needs.

[1] Education, Children and Young People Committee, 2023. Stage 1 report on the Disabled Children and Young People (Transitions to Adulthood) (Scotland) Bill. https://digitalpublications.parliament.scot/Committees/Report/ECYP/2023/10/5/27c15042-2e57-41a2-8e41-63cb9d83f315#4cb8ee30-d681-4243-a7fb-587c7a271620.dita

[2] UN Committee on the Rights of the Child. General comment No. 9 (2006): The rights of children with disabilities. https://www.refworld.org/legal/general/crc/2007/en/48507

[3] WHO, 2018. World Health Organisation updates classification of autism in the ICD-11. https://www.autismeurope.org/blog/2018/06/21/world-health-organisation-updates-classification-of-autism-in-the-icd-11/#:~:text=With%20regards%20to%20the%20described,on%20the%20country%20or%20culture.

[4] SPICE, 2024. Attention Deficit Hyperactivity Disorder (ADHD) in Scotland – Prevalence, treatment, and private care. https://spice-spotlight.scot/2024/09/04/attention-deficit-hyperactivity-disorder-adhd-in-scotland-prevalence-treatment-and-private-care/

[5] By an appropriate medical professional

[6] CYPCS, 2025. Additional Support for Learning in Scotland. https://www.cypcs.org.uk/resources/ecyp-asl-dec23/

[7] Education, Children and Young People Committee, 2024. Additional Support for Learning Inquiry. https://digitalpublications.parliament.scot/Committees/Report/ECYP/2024/5/15/496ab9b0-bd4a-40ed-8f16-64d07018b3d6#Chapter-1

[8] CYPCS, 2025.  This is our lives, it matters a lot. Putting children’s rights at the heart of education. https://www.cypcs.org.uk/wpcypcs/wp-content/uploads/2025/03/March-2025-Education-reform-report-FINAL.pdf

[9] SQA, 2025. Assessment Arrangements Explained. https://www.sqa.org.uk/sqa/files_ccc/2025-nq-assessment-arrangements-centre-guidance.pdf