The launch of the National Autistic Taskforce (NAT) was announced at an event at the House of Lords on 12th December 2017. The following is a speech that was made introducing NAT by Dr. Damian Milton who will be taking up the position of Project Leader. http://nationalautismproject.org.uk/national-autistic-taskforce
As an autistic academic and father to an autistic son, the recommendations that come from such reports (referring to ‘The Autism Dividend’) and how they are interpreted and acted upon are of great personal importance. The report highlights many of the issues faced by autistic people and their families, and offers some wise areas for investment, including in research. My involvement in the project was as part of the Autistic Advisory Panel. Through this opportunity, I and others could show through our passion and expertise, our worth to such projects. At the launch of the report, both Dinah Murray and I were fondly referred to as ‘productive irritants’. It was this recognition that our critique was always with good intentions, that enabled us to input into the report in the way we did, and I feel that the report benefitted greatly from it.
In the history of autism theory, policy and practice we are at an important crossroads. Whilst there have been improvements in general public awareness, in some areas of educational support, in autistic people supporting each other through community efforts, and so on, we also have the legacy of abuse scandals, preventable deaths, and mother blaming, for example that highlighted by the ‘Justice for LB’ campaign. There are many gaps in knowledge and service provision that adequately meets the needs of autistic people and their families. In many cases this can lead to horrendous consequences.
The ‘Autism Dividend’ report highlighted many of these gaps in the evidence-base. Whilst there has been much ‘basic science’ research in the field of autism, good quality research and evidence in terms of support strategies, and how best to help autistic people live fulfilling lives, is far less forthcoming. In the worst cases, this can lead to ill-informed practices that can exacerbate the difficulties faced by autistic people. This is all the more pertinent for those who are less able to articulate their needs and advocate for themselves in ‘traditional’ ways.
Recently, the James Lind Alliance published findings from a stakeholder consultation exercise to list the top ten priorities for autism research. First on this list was looking at ways to help the mental health of autistic people. This is but one example of how for too long research and practice have focused primarily on interventions concerning change by the individual autistic person, rather than wider social change. Often interventions are not person-centred or even adjusted for autistic sensibilities generally, and do not attend enough to the social dynamics that autistic people find themselves in.
Earlier this year I wrote a blog piece for the project website where I suggested that:
“Such work needs to have an impact on policy and practice however, in order to see real social and cultural change, and where instead of working against a person’s ‘autism’, practitioners can work with autistic people and their families with mutual respect.”
It is for this reason, I am very proud to announce the launch of the National Autistic Taskforce (NAT), of which I will be taking up the role of Project Leader. The primary focus of the Taskforce will be to help empower autistic adults, including those with less autonomy and higher support needs, to have a stronger voice in the decisions and direction of their own lives. Unlike many other groups working in the autism and learning disability fields, the National Autistic Taskforce will be led by autistic people, and the group has been given complete freedom by the Shirley Foundation to set the direction and approach of their work.
Based on the principles of co-creation through a community of practice, the National Autistic Taskforce (NAT) will contain a series of working groups, each chaired by an autistic person and involving both autistic and non-autistic members and contributors. Each will be established to consider key topics, including care standards, family involvement, effective diagnosis and post-diagnostic support, psychiatry and research. The group is particularly interested in finding ways to help empower autistic people to exercise autonomy in the decisions taken about their lives. They will explore the protocols around how ‘choices’ are currently made, and work with autistic people, families and service providers to boost and call for more independent advocacy, for example through peer support.
Backing up this approach, we will look to set up a new, accessible website – AutNav – for autistic people and people with learning disabilities. It will provide information and links to a range of topics, including organisations working with autistic people, consultants and trainers as well as news, resources and advice on understanding the law.
The National Autistic Taskforce is a vital opportunity for the autistic community and its allies to work together to turn the core principles of the National Autism Project into reality. Namely: personalised actions, choice and control, addressing inequalities, and a life-long perspective. I would therefore like to thank in particular Dame Steve Shirley for her continuing support and for making this project possible. For too long autistic people have not had a strong enough voice in the decisions which directly affect their lives, this needs to change. From the outset we will be looking to make this project sustainable, and to that end I hope all of you here will lend your support to this new endeavour.