We’ve worked with autistic people, researchers and health professionals to develop a set of recommendations for policy makers who are reviewing the English Autism Strategy.
What is the Autism Strategy?
The English Autism Strategy sets out how public services should support autistic people across the country. There are similar strategies for Scotland, Wales and Northern Ireland.
How can we influence the strategy?
Throughout 2019, the Department of Health and Social Care are leading a full review of the Autism Strategy. They will be launching a call-for-evidence about how the current Strategy is working and what the next Strategy should look at. As the UK's autism research charity we are feeding the latest evidence into the strategy.
We have worked with autistic people, relatives and researchers to develop a set of briefings that we've compiled into a compendium document. These contain recommendations on a series of topics based on the latest research evidence.
Summary of briefing topics
Approximately 1 in 5 women with anorexia in eating disorder services are autistic. The evidence about how to support them is moving on, services and policies to tackle eating problems must do so as well.
Adult mental health
We need to get better at preventing, identifying and treating the mental health problems that almost 8 in 10 autistic people face. This is the community’s top priority for research.
Children and young people's mental health
Mental health problems are currently the norm, not the exception for autistic children. Services need to be prepared and resourced to support young autistic people effectively.
A disproportionate number of people who die by suicide are autistic. Evidence about suicide in the autistic community is evolving rapidly, prevention efforts need to do so as well.
Epilepsy is the leading cause of early death for autistic people with learning disabilities. Developing personalised treatments to prevent seizures should be one of the highest priorities of autism science but almost no research is working towards it.
Other co-occurring conditions
Autistic people are more likely to develop a wide range of health conditions. The health inequalities facing autistic people are relevant to most NHS workstreams.
The importance of reasonable adjustments in healthcare is widely accepted. We need to support services to personalise adjustments and provide more choices about how to access care.
The NHS Long Term Plan commits to piloting regular health checks for autistic adults. That project must work collaboratively with the research underway to design an effective health check.
Access to adult diagnosis
Most autistic people are adults, but most adults are undiagnosed. We must ensure autistic adults can access recognition and support when they need it.
Adult diagnosis process
There is growing evidence and consensus about how to effectively diagnose autistic adults, but the process people go through still varies widely across the country. We need to work together and tackle the unwarranted variation.
Post-diagnostic support for adults
Currently, it’s the norm for autistic adults to receive no support after diagnosis. Services and policy makers need to see post-diagnostic support as their opportunity to tackle serious health inequalities.
Diagnosing autistic women and girls
Autistic women and girls were almost entirely overlooked in the past and continue to face barriers to diagnosis today. It's past time we combat stereotypes and delivered parity.
Many autistic people want to work but are shut out by inaccessible recruitment processes and barriers in the workplace. We’re working with researchers to help employers to reach this untapped talent pool and enable autistic people to maximise their potential.
Autistic people have a right to access public spaces. Our new citizen science initiative will build our understanding of which environments work for autistic people and how to account for their diverse and sometimes conflicting sensory experiences.
How we created the recommendations
In 2018, we ran an online consultation to ask autistic people and their supporters about the issues that matter most to them.
Our team worked with an autistic advisory group to review the responses and decide which issues to focus on. We prioritised topics that were community priorities and had new evidence to drive change.
We then worked with professional experts and experts by experience to review what the current evidence says, what we still need to find out and what we can do now.
How will we make change happen?
We are sharing the compendium of briefings and working with policy makers, charities and services to advise them in making evidence-led changes.
We will continue to campaign on these topics until every autistic person has a chance of a happy, healthy and long life.