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May 22

My Testimony to the Massachusetts General Court’s Joint Committee on Children, Families and Persons with Disabilities on May 21, 2013

Testimony of

Michael F. Wilcox
217 East Road
Alford Massachusetts 01266
mfw {at} mfw(.)us

21 May 2013

to the Committee on Children, Families and Disabilities

House Bill 78
An Act to permit the Department of Developmental Services to provide services to adults with developmental disabilities

My sincere thanks to the Committee for holding a hearing on this critically important bill. I come before you in many roles, one as a member of the Autism Commission. As I’m sure you know, this bill represents the highest priority recommendation of the Commission.

I also serve on the Board of Directors of the Asperger’s Association of New England (AANE) and its Advocacy Committee. This bill also represents AANE’s highest legislative priority this year, and its implementation would be of critical assistance to many of the thousands of our members who live, work, or go to school in Massachusetts.

I have also been active for the last two years in the Cross Disability Advocacy Coalition (CDAC), a program of the Disability Law Center, and this bill has wide support in the disability community. Jonathan Gale, the coordinator of the CDAC, could not be here today, and he asked me to give you his thumbs-up.

But the most important qualification I present to you today that I hope will give greater weight to my words is that I am autistic. I can tell you first-hand what it is like to struggle to get by in an alien world. I attended public schools in Stockbridge before the days of Special Education. I always knew I was different, and I wondered why I found some things so hard to do, and some things so terribly easy, compared with the kids around me.

I self-diagnosed Asperger Syndrome eight years ago, and that was a life-transforming experience. I wish I had known many years ago that I am autistic, but this just wasn’t possible. I could have used some of the services that this bill will make possible. Not all the time, and certainly not for my entire life, but just to help me out during a rough patch here and there.

Somehow, I managed well enough, in many ways, although my path was more difficult than it might have been.

I did not transition well into the adult world after high school, and lived in poverty for a time, doing odd jobs and renting a room in Springfield, where I had to shake the cockroaches out of my shoes in the morning before getting dressed. I managed to go to college part-time while working. I excelled as a scholar, graduating at the top of my class, as the President of the Honor Society, but it took me nine years to do it, and another four years to earn my Master’s degree in Economics.

From there, I created a career for myself that I enjoyed tremendously, working in finance and investments. I worked for many years on Wall Street, including a stint with Morgan Stanley, where I rose to be a Principal. I also spent time here in Boston as a Vice President of State Street Bank.

So, yes, I have a résumé that anyone would be proud of, but that also represents a veneer that glosses over the difficulties and heartaches that have marked my life. I did not understand office politics, and did not play the game well, nor was I interested in doing so. Quite frankly, if I had not been so brilliant in the technical aspects of my work, and so popular with clients, I would not have done nearly so well in the business world.

And all of these accomplishment do not say anything about my personal turmoil; the long periods of severe depression (which I now know are common for autistic people), the friendships and romances that ended before I wanted them to, for reasons that I did not understand. And the fact that I was fired from more jobs than I quit.

Being autistic is not just a struggle, although it is that. Autism is also a pathway to joy. I now know why it was that I was entranced by the poetry of Khalil Gibran when I was young.

Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain..

It seems that the autistic personality is composed of such pairs of polar opposites. Just as we have the capacity for great sorrow, we also have the capacity for great joy. We are paranoid and pessimistic, and we are also stubbornly persistent and confident. Such are some of the faces of this multifaceted jewel we call autism.

Over the past few years, I have received an enormous amount of help from the Asperger’s Association, from my autistic friends, and from our allies. I wish I had been given the opportunity to receive this kind of assistance years ago. I can’t change history, but it is never too late to learn new ways of behaving and thinking. I am now more at peace with myself and more comfortable in the world. I am living proof that one can teach an old dog new tricks.

I am now in a position to help others, and I enjoy doing that. I engage in public speaking and I consult with parents, both singly and in small groups. I have a blog and I am active in the social media. I help run support groups for couples who are dealing with the impact that autism/Asperger’s can have on a relationship. I get a great deal of satisfaction from all of this, and I only wish that more people had access to the kinds of programs that I know are helpful to the people whom I encounter.

The legislation under consideration here, House Bill 78, represents a huge step in the direction of providing services such as the ones that have helped me to understand and to deal with the implications of my own autism.

I strongly urge its passage, and I thank you for your consideration.

 

House Bill 77
Concerning establishing an integrated confidential data system among state agencies to track information on autism.

In my work on the Autism Commission, I became keenly aware of how little hard data we have in the Commonwealth on the provision and the potential future need for services having to do with autism. Even the limited statistics that we were able to garner from various sources used inconsistent definitions and categories. The statistics in our report represent our best estimates, based on extrapolations and comparisons with data from other states and federal agencies.

House Bill 77 addresses this issue, which represents one of the highest priority recommendations of the Commission.

We don’t envision a complex and costly system, but a coordinated and consistent effort to keep track of the number of people now being served, and with which services, as well as statistics concerning indicators of future demand.

Needless to say, information like this is critical to planning and to projecting potential future expenditures, as well as the impact of beneficial outcomes.

In the area of employment, for example, the Mass Rehab Commission (MRC) is aware that a large percentage, perhaps even a majority, of the people it serves are autistic. As more autistic students age out of their transition years, it is likely that the need for specialized employment services will grow.

It is critical to MRC, in planning staffing levels, expertise, and training to have a better handle on approximately how many people will need these services. And, successful outcomes will depend on MRC having the kind of programs that will address the particular needs of autistic people to learn such things as interviewing skills, how to deal with office politics and other social interactions, and a myriad of related topics. Often, their clients are bright and well-qualified, but do not succeed in job placements for reasons having nothing to with their technical skills.

Similar examples could be given in the areas of independent living and higher education.

As the saying goes, all of this is not rocket surgery. This is probably one of the easiest and least costly things that you are going to be asked to do today. Thank you for your support for this critical effort.

 

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