Spectrum 10K Consultation: introducing Leneh Buckle, Co-Lead, HVM

The HVM team is very pleased that Leneh Buckle has joined us as a freelance Co-Lead on the Spectrum 10K Consultation. In this post Leneh introduces herself and gives information on her background and rationale for taking up the role.

My background

I am an autistic autism researcher. I have been involved in autistic community since 1997 and I have been an important part of developing Autscape, the autistic event, from its inception in 2004 through to its 18th annual event this year. I train social care providers and social workers and I sit on disability benefits tribunals. I have university degrees in psychology, cognitive neuroscience, and bioethics. I am doing a PhD looking at Autistic inertia, and I consult on quite a lot of other research projects.

I don’t have a lot of spare time with all this going on, but when I do, I like to play strategy games and spend time with my family, especially my new grandson. I also have an autistic partner, friends, and four autistic children plus the family’s token NT.

Why I applied for the role

I am aware of the criticisms of any autistic person who is willing to associate themselves with a genetic research project, so I want to explain what motivated me to apply for this position.

Following the backlash against the Spectrum 10K project last year, the project team decided to do a further public consultation. They commissioned an independent agency, Hopkins Van Mil, to conduct this consultation. It has been rightly pointed out that such a consultation could not be run properly without autistic involvement at a high level. Because Hopkins Van Mil did not already have someone on their team who could provide that, they sought an autistic co-lead.

I felt that my personal, professional and academic background was well suited for the position. I have always trod the line between the autistic community and researchers, and I am an active proponent of genuine participation of autistic people in the development of autism research. I don’t expect to escape criticism; in fact, I assume it will at times be harsh and personal. I hope that my history as someone who has worked for autistic community and conducted community-driven research will help community members to trust that my intention is to listen to them and make sure that the consultation is developed and interpreted in a way that ensures their voices are heard.

Am I a token?

One of my most significant concerns when I was considering applying for this position would be that my role would be tokenistic. I did not want to be just another tick in a box, and I was prepared to fight for a legitimate role if necessary. I am happy that thus far it has not been necessary. I have only been working on this project for a very short time, but I have found that my opinion is highly valued, to the point of being able to tell them when their usual methods need adjustment or just won’t work for autistic people. The team have also had training in working effectively with autistic people from me, rather than generic training developed by NT-led organisations.

I want to be clear that I am not part of the Spectrum 10K research team, nor am I providing direct consultation for them. I am working as a freelance contractor for Hopkins Van Mil to develop and carry out this public consultation. All of this doesn’t mean that I can guarantee the results of the consultation will be taken on board by the Spectrum 10K team. What I can say is that the consultation itself is genuinely co-produced.