I am resurrecting this blog under a new name to comment on recent developments in my life and advocacy efforts. When the older articles were originally published in 2007-2008, this blog was called aut-word.
I will be participating in something called the "Autism Representatives Group" or A-reps, which will have a consulting role in the large multinational research programme AIMS-2-TRIALS. The projects in this programme are run by pharmaceutical companies, universities and NGOs, a total of 48 partners. The A-reps group is run by the British research funding charity Autistica, the University of Cambridge, and Autism Europe. Its first six members will support the coordinators in their selection of the rest of the committee.
Many people who know me might wonder why I've decided to participate in this, and whether the organizations where I do my voluntary work are involved.
None of the organizations or networks I'm involved in have had any part in this. I can only consult on the basis of my own knowledge, training and experience. As the project website puts it, we will consult "from the many different perspectives of people with personal experience of autism".
I consider this a tentative early step towards active involvement of autistic people in this type of research. Medical and genetic autism research goes on in many forms, in numerous countries and projects, without any attempt to hear autistic voices, and without anyone protesting. We have to start somewhere to have a chance of learning to influence such work.
I am probably more inclined than many others in autistic communities to expect something useful to come out of biomedical research. I sometimes feel that people are barking up the wrong tree because they have simply misread some article, or more probably, believed some journalist's inaccurate interpretation of it.
I know many people who feel that some type of medication is essential for them to get through the day, and I feel I cannot judge them. I hope some of them will eventually get something more closely tailored to their needs than the current products. I also hope that eventually some of this research will contribute towards monitoring our vulnerabilities to certain physical illnesses, and providing treatments.
I do not have faith in every research direction, though. My presence in A-reps should not be interpreted as endorsement of any particular research team or project partner. I am, and intend to remain, a critical voice, not participating to advertise anyone or anything to potential customers or trials participants, but simply to provide feedback. I'm also hoping that I might be able to translate some of the research to lay terms, to help other group members to join discussions and develop informed opinions.
My views on some general aspects of research are quite close to the ones expressed in this response sent to the European Medicines Agency (EMA) in 2016, regarding their draft guidelines for researchers. The text was signed by several autistic people's organizations, and it was completely ignored by the EMA. Perhaps with sufficient repetition, some parts of the AIMS-2-TRIALS consortium will eventually hear what we were saying back then.
