A few more years passed and in 2014, Dame Steve, who had used her unexpected great wealth (see her autobiography, Let It Go ) to give very many millions of pounds toward fathoming what autism is all about, decided to commission the “National Autism Project” (NAP) to study whether anything useful had emerged from all these decades of autism practice and research, much of it funded by her.
Thus, in 2015 Ian Ragan and Elizabeth Vallance (from the original Autism Speaks UK) approached me to join the NAP Strategy Board. I felt honored, but it mattered to me that if I said yes I wouldn’t just be there as “window dressing.” As I explained, my experience as a trophy autistic person at the National Autistic Society had been recent and bruising. I also did some agonizing over the generous benefactor’s past involvement with Autism Speaks and her own attitude to autism; but she had funded the first online autism conference, in 1999, to which I’d contributed with Mike Lesser and the Webautism course which I helped develop and taught on at Birmingham University—and Autistica was being transformed. Also, they agreed to everything I asked for.
I asked for: communication support for attending Board meetings (in the shape of Damian Milton), as I knew my ability to speak up in a timely manner was limited at best; I was also concerned that I needed my own ‘sounding board’ and input from beyond my own limited perspective. Happily both these ideas were accepted and I constructed a strong advisory panel with a wide range of both academic and practical knowhow, and I was able to come to Strategy Board meetings with the unfailingly articulate (and like-minded) Damian. Hilary Gilfoy, who had guided Autistica’s disentanglement from Autism Speaks, was not technically on the Board, but took excellent minutes at Board meetings and was perceived as a supportive presence by both Damian and myself (and, I think, by her old friend Dame Steve) owing to her calm friendliness.
Having someone as steady as Damian by my side, who also had a fantastic grasp of all the key issues, transformed my capacity to be of some use at the meetings. Eventually everyone was treating us both as equal Board members, and he was contributing freely on the spot in a way I cannot perform myself. There were few occasions when our views diverged, which obviously helped—and at the final Board meeting Damian couldn’t attend and I managed to contribute quite fluently myself as I had learnt to trust the people there. How did that happen?
It didn’t start too well. A lot of work had been done and decisions taken before the first Board meeting took place—that included drawing up a list of Experts, all of them professionals from academics to psychiatrists to charity bods. I queried why the Autistic Advisory Panel (AAP), who I knew to be deeply knowledgeable in the field, did not also count as “experts.” I went and met and talked to the report researchers Professor Knapp and postgraduate Valentina Iemmi quite early on, and I think opened their eyes to how much disability can be created by a hostile environment and what that might mean vis-à-vis autism. They appeared genuinely interested. Even so, by the summer of 2015 I was beginning to think of resigning because of the way the AAP members were lumped together as “Dinah’s panel” and their individual great expertise disregarded. However, Damian, AAP member Catriona Stewart, and I had a chat at Autscape and Catriona argued for the Panel to have a face-to-face meeting, which we later did, with the NAP Project Leader, the NAP Chair, and Hilary in attendance. That was the beginning of the real listening.
Gradually all the people on the Panel became distinct and valued contributors to the NAP. The interesting and open-minded other members of the Strategy Board began to hear favorable things about us. Two of the AAP members were turned from pawns to queens and added to the Experts list—Drs Yo Dunn and Catriona Stewart. Cat was their Scottish specialist and Yo was far the most effective and knowledgeable expert they had when it came to calling the Government out on its own laws. In effect she became the NAP’s warhead, wheeled into many discussions with senior civil servants to blow them away with her detailed and accurate legal knowledge.
By the time the Project report, The Autism Dividend, was launched in early 2017, the large contribution of members of the Panel as well as our “experts” was being explicitly recognized. The report was repeatedly revised and improved by our critical input—and saved from some serious failings—which resulted in Damian and myself being honored at the report launch in a House of Lords venue, as “Productive Irritants” by its lead author, Martin Knapp. Some fundamental differences from his earlier report on “the cost of autism” were that the burden/disease concept had been replaced by explicit recognition of autistic potential and of the varied barriers that prevent it from being realized; it also highlighted a very poor evidence base for most practice, resulting from widespread very low research standards (see autistic researcher Michelle Dawson on Twitter, @autismcrisis, for much more about those).
At that year’s Autscape (see Buckle, Chapter 8), five members of the AAP were there, and the National Autism Project’s willingness to listen and take us seriously was feted and rejoiced in: the final report is much admired. We are all proud to have contributed to its excellence. Widely seen as the highlight of the 2017 Autscape, Yo Dunn gave a stunning, passionate talk about what she called “The Other Half” and what is more fluent autistic people can and should do about the vast numbers of autistic people who are not articulate but depend on frequent or full-time support. Privately we discussed the idea that if some sort of future for the AAP was going to emerge, its point could be to focus on the Other Half.
In parallel with these discussions, unknown to us, Dame Steve was having some thoughts of her own. Those led her to entrust me with the generous sum of £100,000 to fund a continuation and transformation of the NAP’s AAP. She was clearly pleased we chose to focus on people, like her late son, Giles, who need the most communication support. The new body was named the NAT and acquired the strapline: Bolder Voices—Better Practice.