Advocacy

Petitions

Improve Autism Diagnostic Processes (Feb 2025 - ongoing)

Sign this petition to advocate for improved training for diagnosticians, updated diagnostic criteria that reflect the diversity of autistic experiences, and increased research into the various ways autism can manifest.

Improve access to ADHD diagnosis and treatment across Scotland (Apr 2025 - ongoing)

The petition calls on the Scottish Parliament to urge the Scottish Government to urgently address undiagnosed and untreated ADHD by developing a funded national ADHD strategy, standardising diagnostic pathways across Scotland, reducing waiting times, and ensuring equitable access to diagnosis, treatment, and support throughout the country.

Public consultations

ADHD and ASD pathways and support (Call for views (closed) / Ongoing Inquiry)

The 'ADHD and ASD pathways and support' consultation by the Scottish Parliament’s Health, Social Care and Sport Committee ran from 23 June - 18 August 2025 and was part of a broader inquiry into how people with ADHD and Autism Spectrum Disorder access diagnosis, treatment, and ongoing support. The consultation aimed to understand why waiting times for assessment and management are often long and what drives increasing demand. It sought to explore how these conditions are currently diagnosed and managed, the impact of delays on individuals and healthcare staff, and to identify potential solutions to improve service capacity, referral pathways, and support systems. The inquiry also examined themes like waiting well during the pre-diagnosis period, transitions between services, funding and workforce challenges, and the broader impact on diagnosed individuals. The consultation received 1124 contributions from members of public.

The Scottish Women's Autism Network (SWAN), in their submission to the inquiry, highlighted that long-standing gender bias in autism understanding has led to widespread missed and late diagnoses, particularly among women and minority genders, due to outdated, male-normed diagnostic criteria and tools (not fit for purpose for assessing women). The organisation underscored the severe mental health consequences of delayed diagnosis, including a 13-fold increased suicide risk for autistic women, high rates of anxiety, CPTSD, eating disorders, and social isolation, alongside elevated risks of sexual violence and workplace discrimination. It identifies systemic barriers such as regional disparities in access, the requirement for childhood evidence in adult assessments, and a lack of neurodiversity-affirming training for professionals, which collectively result in misdiagnosis, medical misogyny, and discouragement from seeking help. SWAN called for standardised, accessible adult neurodevelopmental pathways across all health boards, removal of childhood account requirements, and implementation of a stepped-care model with immediate ‘waiting well’ support. Key recommendations included mandatory neurodiversity-affirming training delivered by autistic professionals, investment in an affirming workforce, and a preventative, human rights-based approach that addresses intersectional discrimination and combats stigma.

AMASE in their submission criticised outdated diagnostic practices and criteria biased towards young white males, which lead to under-diagnosis among women, ethnic minorities, and those who mask their symptoms. The organisation called for integrated, multidisciplinary neurodevelopmental pathways, national standardisation beyond local authority control, and urgent updating of clinical guidelines such as SIGN 145 to reflect current evidence and reject harmful behaviourist interventions. It also raised concerns about autistic people with learning disabilities being funnelled into non-affirming services and calls for systemic changes to reduce societal barriers and prevent crisis-driven referrals.

ARGH Scotland’s response highlighted barriers to diagnosis for autistic and neurodivergent people in Scotland, particularly the withdrawal of self-referral options and excessive waiting times, which often span 7-10 years for both adults and children. The group noted widespread reluctance among GPs to refer individuals, sometimes encouraging costly private diagnoses that may be rejected as 'invalid' by the NHS, leaving many people without access to needed support and experiencing severe negative consequences for their wellbeing, relationships, and employment. ARGH called for integrated, nationwide neurodevelopmental assessment pathways that address all neurodivergent conditions in a single process, reduce crisis-driven referrals, and guarantee timely, accessible support regardless of diagnosis status. Their response also stresses the importance of trauma-informed, culturally appropriate, and neurodivergent-led post-diagnostic support, and calls for government accountability and quality control to maintain improvements across all areas.

The National Autistic Society Scotland highlighted that autistic adults face significant barriers to diagnosis, including restricted access, lengthy waiting times, and the closure of adult assessment pathways in areas like Aberdeenshire and Forth Valley due to insufficient funding and staffing. Many adults struggle to obtain referrals unless they have co-occurring mental health conditions or learning disabilities, and even when referred, they face months or years of waiting, often being forced to consider costly private assessments that may not be accepted by public services. The organisation stresses that diagnosis is often essential for accessing support in employment, education, and social security, and that delays contribute to poor mental health, social isolation, and misdiagnosis - particularly among autistic women, who may be incorrectly labelled with personality disorders. It called for urgent, long-term investment to expand the multidisciplinary workforce, implement nationally consistent and integrated assessment pathways, and ensure timely, standardised assessments aligned with NICE and SIGN guidelines.

Scottish Ethnic Minority Autistics CIC stressed that long waiting times for ADHD and ASD assessments stem from increased demand due to greater awareness, insufficient clinician capacity, and the closure of pathways for those without co-occurring mental health conditions. The response emphasised that a diagnosis is often wrongly treated as mandatory for accessing support, pushing people toward unaffordable private assessments, which disproportionately impacts low-income and racialised communities, while shared care arrangements are not universally accepted. It identified systemic barriers including lack of cultural competence among GPs and NHS staff, diagnostic overshadowing, poor understanding of autism and ADHD in women, and dismissive attitudes toward minority ethnic individuals, all of which erode trust and delay referrals. The organisation called for self-referral options, standardised processes across health boards, and investment in community-based, peer-led support, particularly for underrepresented groups. Key recommendations included mandatory equality and cultural competency training for GPs delivered by those with lived experience, expanding the neurodiversity-trained workforce from diverse backgrounds, and training interpreters in neurodivergent needs to improve access.

Regrettably, some of the organisations in their submissions to the inquiry expressed support for the creation of ASD diagnostic pathways that rely on non-clinicians who get ‘trained’ to perform 'diagnosis.' Incorporating such a model into acceptable diagnostic pathways poses a threat to clinical standards and the integrity of the diagnostic process, and is the precise reflection of a pathway that delivered my own - and the others' who have contacted me to say their ‘diagnosis’ looked just like mine - questionable 'diagnosis'.

You can view the published submissions from respondents who gave permission for their responses to be made public here.

My own submission to the inquiry, which sets out concerns regarding non-clinical diagnostic pathways, can be read here.

Advocacy guidance

Independent Advocacy: Principles, Standards & Code of Best Practice, 2019

The guide is intended for people who might benefit from advocacy, advocacy organisations to support their practice, and for commissioners, funders, and regulators to understand how advocacy should operate.