Being Heard: Autism Policy in the UK

26 July 2021


Reported by Anna Kliampa, CSaP Policy Intern and Kate McNeil, CSaP Communications Coordinator

As part of a policy training seminar series for doctoral researchers, Faculty of Education PhD candidate Melanie Greaux and CSaP Policy Fellow Anna Bailey-Bearfield spoke with early career researchers about the challenges facing people with autism, relevant developments in policy and research, and key policy recommendations for supporting those with autism in the UK.

The Autism Act, first enacted just over a decade ago, was the outcome of a long period of campaigning from autistic adults and their families over issues of inclusion, access to services, and public awareness. This act remains the only disability-specific legislation in England, and it has a unique role in placing pressure on local government and health organizations to tackle health inequalities for those with autism.

Disabilities advocate Anna Bailey-Bearfield has worked in policymaking within government and the third sector in policy areas including disability, health, and social care. She has worked with the National Autistic Society and the APPGA, and is presently the Autism Policy Lead with the Department of Health and Social Care. Here, she has worked on implementing the Autism Act and the accompanying Autism Strategy, motivated by the goal of reducing the gap in life expectancy for adults with autism and enabling adults with autism in playing a role in society.

The new Autism Strategy, was described by Ms. Baily-Bearfield as an important step towards securing a healthy adulthood for people with autism by focusing on early intervention measures for children with autism – including appropriate education and healthcare services – with the goal of maximizing the chances for an independent adulthood. The development of this strategy has occurred at a cross-government level and involved the development of a fit-for purpose methodology, which involved people with autism, parents of children with autism, and professionals. A national call for evidence was used as a form for public engagement, and this was complemented by focus groups with relevant actors including NHS England and local government associations.

Successes, Challenges and Next Steps:

Ms. Bailey-Bearfield noted that awareness of autism has increased over the past decade, however, while public knowledge of autism has increased, the general public often does not understand how autism may affect people’s lives, or how to best support people with autism. Moreover, while autism has become a priority in the NHS healthcare plan for combatting health inequalities and autism training has become mandatory for all healthcare workers, there are still major challenges that need to be addressed if we are to meet the needs of autistic communities. For example, an increasing number of people in England have been diagnosed with autism, with 1.8% of school children estimated to have this developmental disability. These growing numbers are placing pressure on the services designed to support autistic people, including mental health services, educational supports, employment supports, timely access to diagnosis, and supports at the point of transition from childhood to adulthood. Other areas where additional support is needed include tackling gender inequalities in autistic communities, and the involvement of individuals with autism in the criminal justice system. The pandemic has also impacted the challenges facing those with autism and their families, and research emerging from sources including the London School of Economics is now informing our understanding of how to cope with autism under pandemic conditions.

Communication, Disability, and Autism:

Adding to the conversation, doctoral researcher Melanie Greaux highlighted findings from her research, which focuses on the inequality surrounding communication disability at the intersection of neurodiversity and autism with linguistic and cultural diversity. Her recent work focuses on language barrier and has resulted her recommending that steps be taken to raise awareness for inclusive communication strategies at societal level and at school level. Here, she argues that autism should be viewed primarily as an opportunity for society to communicate more flexibly and adapt to different communication styles.

Recognizing that there is a vast spectrum within the autism community, Melanie stressed that the services provided to families should be tailored to their needs, with a variety of service options on offer which should be developed in collaboration and consultation with the autism community. When meeting the needs of those with autism from bilingual communities, Melanie also stressed the need to ‘deconstruct the myth’ that bilingualism is detrimental for language development. Instead, she highlighted a need to support projects that support linguistic and cultural development for autistic children.