A new autistic-led taskforce has pledged to address the “hypocrisy and injustice” that faces autistic people, and make it easier for them to control their own lives, with the help of a £100,000 grant.
The National Autistic Taskforce (NAT) is being funded for two years through the grant from the Shirley Foundation, which was awarded because many of the taskforce’s members had worked as advisers to the National Autism Project (NAP), which is also funded by the foundation.
Dame Stephanie Shirley, the foundation’s founder, was so grateful for their work that she provided £100,000 funding for an autistic-led project.
The leadership of the new taskforce, and all its founding members, are themselves autistic.
The 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”.
It was launched at a House of Lords event this week.
In a speech to launch the taskforce, the project leader, the autistic lecturer and consultant Dr Damian Milton (pictured), said that although there have been some improvements in public awareness, educational support, and peer-led community support for autistic people, there were still “many gaps in knowledge and service provision” that can lead to “horrendous consequences”.
He said: “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.”
One of the concerns of the taskforce is that significant numbers of autistic people are being denied their freedom through the application of Deprivation of Liberty rules, with many forced into long stays in assessment and treatment units.
Among the taskforce’s tasks will be to examine how autistic people can be given more control over their lives, and how to improve access to independent advocacy services, including support provided by autistic advocates, while it is also likely to focus on the failings of the national care regulators, including the Care Quality Commission.
A series of NAT working groups, known as GNATs, will look at key topics such as research, care standards, and effective diagnosis.
Non-autistic people are being asked to join the working groups, but all of them will have a majority of autistic members.
The aim of the GNATs is to be “productive irritants”, pushing for action on government policies and how they are put into practice.
There will also be a new website, AutNav, aimed at autistic people and people with learning difficulties.
Although the taskforce is a two-year project, the aim of one of the GNATs is to look at how to make NAT a self-sustaining body.
Dinah Murray, a member of the NAT strategy board, and strategy adviser to the taskforce, told Disability News Service: “We are basing our practice on the key autistic strength of atypically strong and pressing interests: we see hypocrisy, injustice, and the failure of the whole legislative infrastructure blatantly before us, in regard to people for whom we have exceptional fellow feeling, and it really fires us up.
“We are also highly solution focussed as part of our autistic dispositions. We want to shake things up and we are not afraid to try.”
She said there were “appalling injustices going on” and that they had “the shared expertise, passionate commitment and tough mindedness to drive needed change”.
She said there were widespread “negative attitudes and poorly thought out practices”, but “the most gravely abusive treatment is of people with the highest care needs”, such as Connor Sparrowhawk, whose death in 2013 in an NHS care unit led to the Justice for LB campaign.
She said autistic people were facing “incarceration, forced drugging, distant re-location, fatal neglect, absent access to communication support, imposed life decisions made without consultation [and]excluded family and friends”.
Murray said: “We have sources of deep knowledge in these areas and we have an intensely committed team determined to change things; we are solution focussed, flexible and seeking justice.”
She said she believed it was the first time an autistic-led project had been given such significant funding “without specific requirements about how it should be spent”.
Murray said the project showed “a shift in the power balance”, and was an example of co-production “based on a history of earned mutual respect”.
She said it followed “an acknowledged autistic success” in which she and other autistic members of the taskforce had had enough “common purpose” and “will” to work successfully with the National Autism Project, even though they had originally thought the project was “misconceived”.
The National Autism Project aims to provide “authoritative” recommendations on autism research and practice and “raise awareness at government level and among funders” of the benefits of greater investment.
A report by the project, published in January, found that the failure to base support for autistic people on the best available evidence came at “an unacceptable human and unsustainable financial cost”.
The challenges, it found, were “exacerbated by the limited investment in research to fill the many gaps in that evidence”.
Milton told the House of Lords event: “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.”
Dame Stephanie, whose late son was autistic, said: “The National Autistic Taskforce is a hugely exciting project.
“It takes us to the next level – a group of independent autistic people determining what they will focus on, who they will bring in and how they will work together.
“I’m confident they will have a major impact on how we think about autism as a society.”