Policy update‍ ‍

The policy landscape continues to develop rapidly, and updates on the latest state of play, and the Alliance’s relevant work, are set out below.

Following publication of the Government’s SEND reform consultation, running to the 18th May, we have hosted two discussion calls for Alliance CEOs and will be hosting a final call on 7th May before the consultation closes. The Alliance is submitting a short response to the consultation focusing on the importance of culture change and positioning the voices of children and young people as the last word on whether the Government’s plans are working. We will be sharing this with Alliance members, including a set of lines/messages that can be included in individual members’ responses to the consultation.

The main news in the past month is the publication of the interim report of the Independent Review into Mental Health Conditions, ADHD and Autism. As noted in previous updates, this is an extremely important review as what it says could inform policy for years to come. It also carries a lot of risk as it is happening at a time when claims that autism (and ADHD) are being ‘overdiagnosed’ are circulating in some areas of politics and public life.

The interim report is a summary of the data and analysis done so far by the Independent Review team. As such it presents ‘implications’ but no firm conclusions at this stage.

There are some positives in the report: there is a focus on the importance of meeting needs, and recognition that the reasons for rising autism diagnosis are complex and shouldn’t be oversimplified. The report also acknowledges the importance of considering all evidence including both clinical evidence and evidence from lived experience. On a less positive note, the report is written from a largely medical standpoint so uses language we wouldn’t use and isn’t used by many in the autistic community (eg. impairment, functioning) – and has already drawn unhelpful headlines from the media: ‘autistic children incentivised to get a diagnosis’. The Review team have not (so far) been able to engage substantially or meaningfully with the autistic community.  

The main headlines from the interim report across mental health, ADHD and autism are:

· There is credible evidence that distress in young people has increased, particularly emotional distress, loneliness, difficulty with concentration and confidence, and anxiety; and in ways which are likely to have material effects for their lives in terms of education, employment, relationships, and health outcomes.

· Diagnosis is being used as a condition to access support (as we know well).

· Need and diagnosis are not the same thing, and helping more people almost certainly requires a focus on need.

· Trends in diagnosis and need have also been shaped by social and cultural factors.

The main headlines focusing on autism are:

· Autism prevalence has remained stable while recorded incidence and self-identification (ie. new diagnoses) have increased.

· There are most likely several factors contributing to the steady increase in autism diagnosis rates: greater public awareness, increasing self-identification, improved recognition in females and other previously under-identified groups, and stronger institutional use of autism diagnosis within education and support systems.

· Questions remain about consistency, quality assurance, and comparability in autism diagnosis in different areas of the country. (This was highlighted in a report from Autistica in 2024.)

· Changes in diagnostic frameworks have affected how autism is defined and identified. This will mean debate about whether such a wide definition is helpful and highlights the importance of the system responding to need rather than diagnosis.

The final report of the Independent Review is expected in May/June, following which the Government will consider and may respond. The Autism Alliance is continuing to engage with the Review team, making clear where we think there are opportunities and ‘red lines’. As a result of these conversations, we believe the Review team is very aware of the risks attached to ‘what they say and how they say it’, but it will all depend on what they choose to put into their final report.

The key opportunity is a strong recommendation that public services meet autistic people’s individual support needs rather than treating diagnosis as a condition for accessing support, and that wider change is required to enable this to happen. The key risks are that some autism diagnoses are seen as less valid than others, and that changes are proposed (eg. creating sub-categories of autism) that reduce and over-simplify autistic people’s individual experiences and support needs, and which increase the stigma autistic people already face. (This is already a risk in the SEND reform proposals in England through the creation of Specialist Provision Packages.)

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Alongside the Independent Review, and to address these risks, this week we have launched a public policy report, A New Path Ahead. This has been developed with autistic young people, autistic adults, parents/carers, leading autism researchers and clinicians, and other national autism charities. The purpose of the report is to feed into both the Independent Review, the Government’s response, and the policies of governments across the rest of the UK, by making clear that without systemic change to address the deep barriers that autistic people continue to face, any action to focus public services on ‘meeting needs’ will fail. This is because the system is simply under too much pressure to shift from a ‘diagnosis-gated’ model to a ‘needs-led’ model without further restricting access, and because the systemic barriers faced by autistic people (particularly stigma, poor understanding, and poor accountability) are still too deeply ingrained.

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