Leading autism charities, led by the Autism Alliance, have jointly released a report today calling for the government to focus on system change that works for autistic and other neurodivergent children and adults in today’s world.
The report: A New Path Ahead: Why systemic change is the key to better lives for autistic people has been developed with autistic people, parents and carers, researchers, clinicians and autism charities, including Autistica.
It calls for investment and a longterm strategy to reform the systems that diagnose and support autistic people.
These recommendations aim to create a system that:
- enables access to a diagnosis for those who need it
- treats every person as an individual with unique strengths and support needs
- provides the same good support wherever you are in the UK
- adapts to a person’s changing needs
Why is this report needed?
We are concerned about a lack of action from government to review the systems that support autistic people to meet their needs. Demand for diagnosis is growing, and so too are waiting lists. Health, social care and education systems are struggling to give autistic and other neurodivergent people the support that they need. The government is due to develop a new autism strategy but has delayed this, instead commissioning an Independent Review into Mental Health, ADHD and Autism. We hope this report informs the full version of this Review and the development of a new National Autism Strategy for England.
As charities, we want urgent action from government to create a system that works in today’s world, focusing on autistic people’s strengths and needs as they change over time.
What this report calls for
Increase the capacity and efficiency of clinical autism assessment, while transitioning to a model with wider neurodevelopmental and mental health focus
This would reduce autism waiting lists to protect lives now, and support accuracy in diagnosis, while building a more efficient and effective assessment model for the future. In England, it would require only a small proportion of existing allocations for Integrated Care Boards: around £443 million for two years falling to £200 million thereafter, or 0.35%/0.16% of ICB Core Allocations.
Invest in embedding ‘stepped care models’ across health and social care services
that reflect the diverse needs of autistic people and provide support when it is required, to reduce the escalation of need and the chances of crisis.
Invest in addressing the systemic barriers
faced by autistic people, focusing on stigma, poor understanding of autism, and poor accountability for autistic people’s outcomes.
Co-produce, test and scale an evidence-based, acceptable, standardised assessment of strengths and support needs
across education, healthcare, employment, and justice, initially for those waiting for clinical assessment, then broadening to all autistic people. This would build on international models and growing evidence in England. Do not scale this until public services are meeting support needs and there is evidence of improvement in outcomes for autistic people.
Autistica’s Interim Chief Executive, Rebecca Sterry, said:
Too many people are waiting too long for an autism diagnosis. When they get one it often doesn’t give a real picture of the individual: their strengths, needs and any other neurodevelopmental differences that they might have. And too often in the current system, the result is people simply not getting the support they need.
To get this right, we need earlier, personalised support which will prevent needs escalating, save the UK economy money, and change people’s lives. But the whole system needs to adapt to make this work. We and others are helping to develop the evidence for these new approaches, we want to see government support to take it further.
What we are doing to make this happen
We are already testing a strengths and needs based assessment, and working with other leading academics to address the diagnosis crisis.
We are feeding strengths and needs led advice into government via the SEND reforms consultation, and are advising on their employment initiatives. We are keen to work with government to develop the evidence for other system changes.