Tuesday, July 16, 2013

Interview with Michael Forbes Wilcox-Autism Acceptance

I am interviewing Michael Forbes Wilcox. Michael has quite an impressive list of advocacy efforts.  

Michael Forbes Wilcox, 67. I'm retired from a career in finance & investments. I self-diagnosed Asperger Syndrome at age 59, and had it confirmed clinically a year later. Since that time, I have become very involved in disability advocacy, and serve on the Board of the Asperger's Association of New England (AANE), the Massachusetts Special Commission Relative to Autism, and the Massachusetts Cross Disability Advocacy Coalition (CDAC), to name just a few. A more detailed bio is on my website.

While serving on the Autism Commission, I was a member of a small group of Commissioners who drafted the report and recommendations that have now been published. (The Commission is still active, but will meet less frequently now, to review progress on our recommendations.) A couple of years ago, I took it upon myself to round up a small group of people to review and suggest changes to the annual Autism Awareness Month proclamation issued by our Governor. It was undoubtedly the first time that any autistic people had been involved in the process. Most of our suggestions were taken, but there were a few editorial changes that didn't sit well with everyone. So, a year ago, I became more insistent, and also added the word "Acceptance" so that the proclamation became one of "Autism Awareness & Acceptance" -- this added word was greeted enthusiastically in the community, and not just among autistics. One mother of an autistic boy commented, "We need to go beyond awareness; if you're not aware of autism, you've likely been living under a rock for quite some time now!"

What do you think about autism acceptance and awareness, other than your efforts with the Massachusetts Autism Commission?

Awareness has played a huge role in my own life in recent years. Life is much better for me now that I am aware that I am autistic. For me, too, awareness has led, slowly and painfully at first, later with much enthusiasm, to acceptance. I now embrace being autistic, and realize that my difference has been a source of much of the joy in my life, and not just some of the sorrow. I'm still a bit buffaloed by the Executive Function thing, and am working hard to improve my abilities there. 

In many areas of my life, awareness and acceptance have led to an inner peace that had always been elusive to me. I had always wondered why so many of the sensory experiences that bothered me didn't seem to affect those around me. Now that I understand that these annoyances arise from the way my autistic brain processes things, I have learned to either shrug them off (acceptance) or to take steps to reduce the anxiety and stress they produce. I can, for example, avoid places with bright lights or excessive noise. I now feel different, instead of weird, or that there is something "wrong" with me.

I can see, looking back on my life, that I gravitated to activities that were solitary in nature. Although I am a highly social person, and have a wide network of good friends, I enjoy being alone. I need both. My career involved much travel, public speaking, and contact with clients and colleagues; yet the essential nature of my work was solitary. I was a research analyst who used computer models to make predictions and develop pragmatic solutions to investment challenges. I did a lot of writing for publication. In my private life, too, I always had a mix of the social and solitary. I was a stamp collector, and spent many hours peering at small pieces of paper. I am an enthusiastic horseback rider, and although I never ride alone, it is essentially a solitary activity in which I commune with my horse on lovely trails through the woods near my house. I enjoy ashtanga yoga, either by myself or in a class, but even when I am in the company of other people, it is essentially a personal experience. The same goes for hiking. I love being with friends and dogs, but it is also a personal accomplishment to climb a difficult peak. I don't run as much as I used to, back when I trained for Marathons, but I still enjoy it very much; again, even when in the company of others, running is a solitary sport.

In my advocacy work, I encounter myths and misunderstandings about autism and about disabilities in general, and these can be painful. I try to be a countervailing force by speaking out, to politely change the conversation. I enjoy speaking to groups or individuals about my experiences, and I find that it the most effective thing I can do to promote understanding, awareness, and acceptance of autism. A short time ago, I gave a presentation to a conference with over 500 people in attendance. I also have conversations one-on-one with parents. For several years now, I have co-led a series of support groups for neuroexceptional couples (where one or both partners is not neurotypical). I have learned as much as I have taught, and I have been delighted to witness how awareness can lead to acceptance and all of that can grease the skids of life for other people, as they have for me.

Michael, thank you so much for sharing with us both your exhaustive advocacy work and your insights about the importance of autism acceptance.