There has been no shortage of attempts to improve the lives of autistic people. From laws, strategies, guidance and action plans, policy makers have sought to speed up diagnosis, change public perceptions and enforce rights to the UK’s estimated 700,000 autistic people and their families. While there has been some improvement – there is now more public awareness, educational support, and peer-led community support than previously – we also have the legacy of abuse scandals, preventable deaths, and mother blaming, for example that highlighted by the ‘Justice for LB’ campaign.
Too often, autistic people have been frozen out of the decisions that directly affect their own lives. This needs to change. There are also 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. We think a new approach is needed to empower autistic people and their families, and see significant social change.
In mid-December, the new National Autistic Taskforce was launched in the House of Lords. The group is led entirely by autistic people and is funded through a no-strings grant from The Shirley Foundation. We will focus on how to help empower autistic people to gain greater control over their own lives and will seek to address the hypocrisy and injustice faced by so many autistic people today.
The members of NAT will use their shared expertise and persistence to drive change and find ways to 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. A series of NAT working groups will look at key topics such as research, care standards, and effective diagnosis. We will identify issues and potential solutions and demand action.
We believe that good understanding of what makes effective support is critical to improve the ability of autistic people to exercise their autonomy. But as the National Autism Project demonstrated in their January 2017 report, The Autism Dividend, there are still major gaps in knowledge about high quality service provision.
Inevitably, the scarcity of good quality evidence on the best support strategies and how to help autistic people lead fulfilling lives can lead to ill-informed practices that can exacerbate the difficulties faced by autistic people. But the situation is unlikely to improve if we carry on as we are, for example: spending on autism research equates to just £6 per autistic person per annum (compared with £110 for each person living with dementia). But the majority of this is focused on medical rather than applied research.
NAT is thought to be the first project of its kind in the UK: well-funded, independent and – critically – fully autistic-led. We believe this represents an important shift in the power-balance and is a vital opportunity for the autistic community and its allies to work together to focus on implementing the core principles of the ‘Autism Dividend’ report, namely: personalised actions, choice and control, addressing inequalities, and a life-long perspective.
Clearly, there are multiple and major challenges. As NAT comes into existence, we like to refer to ourselves as ‘productive irritants’ – balancing criticism with action. We know that enabling change is not easy. But we know that, through NAT, we have a chance to do just that.