Autism Alliance UK responds to Independent Review into Mental Health, ADHD, and Autism

The Independent Review of Mental Health Conditions, ADHD, and Autism has been published. It is a landmark report with implications for all areas of public policy.

The Review was originally commissioned to examine prevalence - the proportion of people in the population who have poor mental health, ADHD, or are autistic - and has reported no evidence that autism is being overdiagnosed.

However, the Review also looked much more widely at experiences and outcomes and has reinforced something that autistic people and their families, charities, and supporters know, and have been saying, for a very long time. Our society, and our system of public services, is comprehensively failing autistic children and adults, people with ADHD, and people with poor mental health. The distress they experience is real, and the consequences of that distress can be severe, for autistic people too often leading to mental health crisis, self-harm, and suicide. The drivers of this increase in distress are systemic and long term.

This is the real crisis, not rising diagnosis rates.

The Review’s main recommendation is that across health, social care, education, and employment, the right support should be provided earlier and should not be dependent on a diagnosis. The authors describe this as needs-led plus diagnosis, and this reflects the main recommendation in the New Path Ahead report led by the Autism Alliance UK earlier this year.

The Review notes that although there is evidence diagnosis can be harmful when it is inaccurate or used poorly, overall diagnosis remains essential and should be retained and developed with closer integration between mental health and neurodevelopmental conditions.

However, the Review’s overall call to action is broader still: signalling a generational opportunity to reduce avoidable distress, including through reinvesting in community infrastructure for young people lost under successive Governments; and that participation (in its broadest sense - through relationships, family, community, education, and work) should become a central measure of success for policy.

Although the long term vision for a ‘needs-led system with diagnosis’ is positive, the current reality for autistic children, adults, and their families is very different.

• Restrictions on access to clinical autism assessment are continuing to grow, with some Integrated Care Boards in England moving to introduce minimum waiting times.

• Care and support packages for autistic adults continue to be cut by local authorities and health bodies seeking financial savings, often hitting people and families with the highest support needs hardest.

• Autistic children and young people continue to be excluded from an education system that, too often, doesn’t recognise them or meet their support needs. Many parents and carers are unable to work as they become the providers of care and education.

• Autistic adults continue to fight for recognition in employment, and for the adaptations that will enable them to participate and contribute their skills.

• Underpinning this, autistic children, young people, and adults continue to experience stigma and distrust every day. The fact that of all the possible headlines, media reporting of the Review led with ‘the future risk of overdiagnosis’ rather than the imperative of a needs-led system, is one indicator of a much wider societal problem.

The scale of the challenge the Review has exposed is huge, particularly seen across both mental health and neurodevelopmental conditions, and the financial climate does not seem likely to provide the substantial investment necessary to increase support and drive change at scale. In this context, there are serious concerns about whether the Review’s vision can be implemented in the long term - and at the present time, whether cuts to services and support, and restrictions on access to diagnosis, will simply continue, despite the Review’s recognition that diagnosis and support should not be rationed.

As an example, the Review has recommended a clinically-led review of autism and ADHD assessment waiting lists to ensure people are offered the right response to their needs. However, this talks in terms of prioritisation based on needs and risk - and with Integrated Care Boards and local authorities facing unsustainable cost pressure, it will be all too easy for access to diagnosis to be restricted without any meaningful support in its place.

Without investment or substantial redeployment of funding, sustained reform of public services, and action to tackle stigma and distrust across society, autistic children, adults, and their families will continue to experience unacceptable harms, and the vision articulated by the Review will not be realised. The Review is clear that incremental fixes will not be enough, saying: ‘what is needed is a new model of care and radical reform.’

The Government has accepted the Review’s recommendations and committed to address these in its new Mental Health Strategy. But by itself, a Mental Health Strategy is unlikely to deliver the fundamental changes required.

The Autism Alliance UK and its members are ready to support radical action to build a needs-led system, and we urge the Government to think in these terms. But even radical reform will take time: so as a matter of urgency, Ministers must now set out - in addition to a Mental Health Strategy - a plan to protect those at risk while a needs-led system is built. To leave them in limbo for several more years would be a failure as great as the historical failures the Review has already identified.

With the final reports of other key reviews by Alan Milburn and Stephen Timms also expected, and the Budget later this month, it is vital to emphasise how ‘hands on’ Government will need to be to avoid further harm. Autistic children, young people, and adults should be able to live well, and access opportunities where possible, but too often face barriers and unacceptable outcomes whether their support needs are low or high. Taking away access to diagnosis and continuing to cut support will not address this, or the wider crisis in distress and poor outcomes the Independent Review has identified.