The underdog empowered: a case study of autistic policy influence in England (upd 10/20)

Lead Research Organisation: University of Bath
Department Name: Politics, Languages and Int Studies

Abstract

When public policy seeks to solve social problems, it risks problematising people. The scholarship is clear that disadvantaged groups (or problematised people) rarely succeed in effecting policy change in their favour. The politics of need seeks to understand how and why the politicisation of need influences policy choices. While there are many factors which influence lobbying success, increasingly, focus is being given to how groups of disadvantaged people can form networks and coalitions to exert greater pressure on policymakers.
In 2009, the UK made political history when it passed the Autism Act, the first time a country had ever passed a condition-specific Act. Autism, however, is a complex and unusual phenomenon where significant need but also often significant strengths coexist. It also has an increasingly vocal self-advocacy movement which is active in the UK and was demonstrably involved in the campaign behind the Act. Nonetheless, the effectiveness of the Act in improving autism policy has been called into question with critics claiming it is an Act in name only and lacks any legislative teeth. The economic and emotional cost of autism remains high. My own recent research as part of my MRes dissertation suggest that a reason for the toothless nature of the Act is the focus on ideological aims rather than tangible outcomes in the campaign. Lack of funding is often blamed.
In Denmark, however, where there is higher government spending and a focus firmly on tangible outcomes, data suggests that employment levels are lower than in England. Government-funded job placements have given autistic people job-related skills but failed to result in longer term employment. Penal Code 119 results in many autistic people being pulled into the criminal justice system. Funding and tangible outcomes are clearly not the magic key.
This research project seeks to understand how and why the autistic community has succeeded in integrating into policy in England and Denmark and the effects of such integration. It will use a range of methods including causal process tracing, document analysis, qualitative interviews and surveys in a comparative case study. A collaboration has been agreed with autism bodies in the UK and Denmark to include knowledge exchange activities and an internship. Visits to London and Copenhagen are planned.
I hypothesise that the integration of the autistic community into policy, through a coalition or network of connections in which they can provide the expertise element of lobbying but are supported by others with access to financial and decision maker resources, would result in more effective autism policy.
Autism is a 'hot topic' at the moment; however most research has centred around psychological aspects and the mental health, education and criminal justice systems. It is estimated that 1 in 100 adults in the UK have a diagnosis of autism and of these, only 15% work full-time. They are disproportionately represented in both the mental health and justice systems. There is no doubt that there is a political 'problem' here to address through public policy.
Academic studies of public autism policy to date have focused mainly on the United States, Canada and France. By widening the scope of study to the UK and Scandinavia, this study will extend and expand upon existing knowledge.
More importantly, we can identify, through our comparative analysis, ways in which public autism policy in the UK can be built upon and improved. This will then directly benefit not only the autistic community but also their families, friends and society as a whole. By understanding the mechanisms by which the phenomenon of autism has garnered attention, we can also help other disadvantaged groups to make their voices heard, not just in the UK but in other countries too.
Fieldwork will be undertaken in Denmark and possibly France.

Publications

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Studentship Projects

Project Reference Relationship Related To Start End Student Name
ES/P000630/1 01/10/2017 30/09/2027
2102376 Studentship ES/P000630/1 01/10/2018 30/03/2022 Katharine Jane Precious
 
Description Blog entry on Centre for Applied Social Policy website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact I was invited to write a blog entry called 'What role for governments in political empowerment?' for the Centre for Applied Social Policy blog. Information on views is not available but it was shared to a group of over 100 people. It generated comments both on the blog and on Twitter, and I gained a new research participant from it.
Year(s) Of Engagement Activity 2020
URL https://blogs.bath.ac.uk/casp/2020/12/18/what-role-for-governments-in-political-empowerment/
 
Description Developmental Language Disorder (DLD) Parent Workshop 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact On 16 October 2019, I gave a presentation on learning from autism advocacy at a parents' workshop hosted by the Psychology Department at the University of Bath for parents of children with a developmental language disorder. This was a mixed group of people with a developmental language disorder, parents/carers, speech and language therapists and teachers. The presentation was also recorded and shared online. It generated lots of questions and an interest in getting politically involved to influence policy.
Year(s) Of Engagement Activity 2019
URL https://vimeo.com/369379202