Autism Assessment Crisis: Trust Fails Patients

The Western Health and Social Care Trust in Northern Ireland is struggling to keep pace with the soaring demand for autism assessments, leaving hundreds of children and adults facing lengthy waiting lists. A local Member of the Legislative Assembly (MLA) has raised serious concerns about the growing crisis, warning that the situation is rapidly deteriorating due to a severe lack of funding.

Overwhelmed Services and Ballooning Waiting Lists

Figures reveal a stark mismatch between the number of referrals and the Trust’s capacity to conduct assessments. In the past year alone, nearly 1,000 children were referred for autism assessments, while the service can only accommodate approximately 450 annually. This significant disparity has resulted in over 2,600 children currently languishing on the waiting list, a number that continues to rise each year.

The situation is equally concerning for adults seeking diagnosis. The Trust can only offer around 60 adult autism assessments per year, despite demand being three times higher. This leaves many adults in limbo, unable to access the support and understanding they need.

A Looming Catastrophe

The MLA, Mark H Durkan, has described the situation as “nothing short of shocking,” warning that the backlog will “balloon further” if the current trajectory continues. Even if demand remains steady at 950 referrals a year, the Trust will see an additional 500 children added to the waiting list annually. Over the next five years, this could mean an extra 2,500 children, pushing the total waiting list well over 5,000. He fears this isn’t just a looming crisis, it’s already here and spiralling into catastrophe.

The Impact on Individuals and Families

The consequences of these long waiting lists are far-reaching. Children are missing the critical early window for intervention, which can significantly improve their development and quality of life. Families are under immense emotional strain, struggling to support their children without a formal diagnosis and access to appropriate services. Schools are also struggling to support undiagnosed children whose needs are going unmet.

Repeated Warnings Unheeded

The Western Trust has been sounding the alarm for years, submitting business cases and engaging with Commissioners to highlight the scale of the need. However, the Department of Health’s response has consistently been that no funding is available. This lack of action has allowed the situation to deteriorate further, pushing staff to breaking point and leaving autistic individuals and their families without the support they need.

Government Response and Future Plans

Health Minister Mike Nesbitt acknowledged that waiting lists for autism assessment remain a challenge across the region and admitted that the current situation is unacceptable. He outlined several initiatives aimed at addressing the problem, including:

• Appointment of a Project Lead: A project lead for Adult Autism was recruited in March 2025 to take forward regional work to improve the management of waiting lists. The lead is currently mapping existing diagnostic pathways and processes before co-developing an action plan to address regional variation in service delivery.
• Children’s Emotional Health and Wellbeing Framework: Children’s Autism Spectrum Disorder (ASD) assessment and diagnostic pathways and interventions will be addressed through the implementation of the HSC Children’s Emotional Health and Wellbeing Framework, which is due to go out for public consultation in the coming weeks.
• Regional Neurodevelopmental Pathway: Departmental officials are working with colleagues from the Public Health Agency and Child Health to develop a regionally consistent and defined neurodevelopmental pathway for children and young people that complies with National Institute for Health and Care Excellence (NICE) guidelines.

Specific Challenges within the Western Trust

The Minister also addressed the specific challenges faced by the Western Health and Social Care Trust:

• Adult Services: Demand for adult autism assessments has greatly exceeded capacity in recent years. The Trust has capacity for about 60 new assessments per year, but demand has been three times higher. The service is continually making efforts to reduce delays, including contracting extra staff where possible, effectively triaging all referrals received, and streamlining processes. However, these efforts have been limited due to underlying resource constraints.
• Children’s Services: Since 2016, the demand for autism assessments for children and young people has been much higher than the service’s capacity. The Trust can conduct 420 assessments per year but received 950 referrals in the period April 2024 to March 2025. The Trust has advised that more investment is needed to reduce delays in autism diagnosis.

Funding Constraints

Despite the clear need for additional resources, Commissioners have advised that funding is not currently available due to current financial constraints. The Trust has employed one Speech and Language Therapist and is actively recruiting one Clinical Psychologist within the Adult Learning Disability pathway to help ensure individuals with intellectual disability and suspected autism can receive a timely diagnosis.

Call for Immediate Action

The MLA has written to the Health Minister urging immediate intervention and investment in autism services. He acknowledged the pressures across the health service but emphasised that autism services in the Western Trust have been allowed to fall deeper into crisis. He stressed that autistic individuals and their families are being left in limbo without the support they need and that urgent action is required to address this growing crisis.