Yesterday, the government launched its interim report into the rising demands for autism and ADHD assessment and mental health services. This was swiftly followed by an article from the Times, misinterpreting the report and claiming children are ‘incentivised’ to seek a diagnosis.
Our director of research, Dr Amanda Roestorf, outlines our views:
Rising referrals should not be understood as a ‘problem’ in themselves. They are a signal of unmet need.
We welcome the government’s evaluation of autism, ADHD, and mental health to identify ways of improving system-wide care and support of neurodivergent people. It is critical that this conversation is grounded in evidence and reflects the realities experienced by autistic people and their families.
This interim report brings together a wide range of existing data on autism and ADHD. It helps set out the complexity behind the rising demand for assessment.
Rising referrals should not be understood as a ‘problem’ in themselves. They are a signal of unmet need. They are a response to a system where diagnosis is the main route to accessing support. Currently, thousands of individuals and families face long waits with little or no help. This can lead to worsening mental health, disrupted education or employment, and avoidable distress.
Increased awareness, not a change in prevalence
The interim report includes evidence that increased awareness is driving the rising demand for assessment. It is not due to a sudden change in underlying prevalence.
Increased awareness has improved identification across different groups of people. For example, girls and women, people of colour, individuals with more nuanced characteristics, and variations in the presentation of autism, ADHD, and mental health challenges.
Unmet support needs
The report also identifies that support needs are not being met. Too often, people who are autistic, have ADHD or experience mental health problems have no options for support without a formal diagnosis. This has caused a rise in pressure on the healthcare systems. For the people seeking support, it ultimately leads to poor lifelong outcomes, increased mental health difficulties, and reduced autonomy and participation in society.
Increased demand does not reduce the validity of assessment
The coverage in the Times, which suggested children are being ‘incentivised’ to seek assessment, oversimplifies a complex and carefully balanced interim report. The review does not conclude that children are being ‘incentivised’ to seek diagnoses. Instead, it highlights that demand is increasing in a system where diagnosis is the main path to support.
The review reflects a system where more people are identified but not consistently supported. It is therefore essential that the review and media reporting do not undermine confidence in diagnosis or the validity of people’s experiences.
What the report doesn't tell us
Overall, while this interim report presents a balanced first summary of a complex evidence base, it has several significant gaps.
The conclusions in the report are primarily based on observational and service data, which are well-suited to describing trends but have important limitations in establishing causality. The report highlights variation across services in things like diagnostic thresholds, service access, and recording practices. This can distort data when interpreting changes over time.
However, data presented in the interim report on cultural, ethnic, and gender diversity is notably limited. It doesn't represent the wider picture of needs-led support for all autistic people, or those with ADHD or mental health difficulties.
Final thoughts
Demand shouldn’t be reduced. The system needs to respond differently. The priority now is improving support. A more effective route forward could be improving needs-led pathways to earlier support, alongside maintaining high-quality diagnostic assessment.
Further work will help deliver system change and improve support. This will form the foundations for policy recommendations to improve outcomes for autistic people and people with ADHD and mental health difficulties.
We welcome the opportunity to continue working with the Review committee and partners across health, education and social care. We want to ensure the final report reflects both scientific evidence and lived experience, and leads to meaningful improvements in support and outcomes for autistic people.