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Jun 12

Remarks on the Autism Commission

Michael Forbes Wilcox: Remarks on the Autism Commission Delivered at the Massachusetts State House for Autism Awareness Day, April 14, 2011

The remarks below are also contained in a pdf file here.

This is a link to the short bio that was used by the emcee to introduce me.

Michael Forbes Wilcox, speaking in the Massachusetts State House

Michael Forbes Wilcox

You’ve Got to Have A Dream!

If you don’t have a dream

How you gonna have a dream come true?

Words to live by, from the song “Happy Talk” in South Pacific.

I am delighted to be here today to represent the Massachusetts Special Commission Relative to Autism. Part of our job is to dream. The rest of it is just hard work. The Commission was created by the Legislature, and the 31 Commissioners were all appointed by Governor Deval Patrick.

The Commission is charged with reviewing all services offered to autistic individuals living in the Commonwealth that are provided, regulated, or funded by state agencies. The Commission will produce a report to the Governor and the Legislature, in September, which will summarize its findings and make recommendations for improvements. Some of these changes may be possible to implement by Executive Order, others may require legislation.

The Commission is relying on four subcommittees to do research on specific topics. The membership of these subcommittees is drawn from the wider autism community, and reflects the diverse interests of this broad community. In the same way that the Commission is composed, members of the subcommittees represent autistic individuals, parents, family members, educators, legislators, state agencies, clinicians, and other advocates.

The subcommittees are working groups that will meet and work together to produce reports on their respective areas of focus. They will deliver these reports to the Commission for review and possible inclusion in the Commission’s final report.

The four subcommittees are focused on four different age groups, including the period of transition from school to adulthood:

  • Birth through age 5
  • School Age
  • Transition
  • Adult

Meetings of both the Commission and the Subcommittees are open to the public, and you are encouraged to attend.

We have an expression in the self-advocacy community; “Nothing about us without us!” I was eager to be a member of this Commission because I wanted to add the perspective, and the voice, of an autistic person. I want to do whatever I can, both on the Commission, and as part of my autism self-advocacy in general, to make life just a little bit easier for those who come after me than it has been for me. This is the same dream that I believe all the members of the Commission and the Subcommittees share: to make this Commonwealth a better place to live, for autistic individuals, and therefore for all of us, and for everyone who lives in our community.

The variety of organizations represented both on the Commission and here in this room today is evidence of how we all recognize that we are all in this together. Autism comes in a variety of flavors. In fact, there are so many forms of autism that it may not be obvious to that proverbial anthropologist from Mars just exactly what it is that we all have in common.

Some of us, like Elizabeth and me, will be able to stand up in a room in the State House and tell you what it’s like to live as a stranger in a strange land. Others of us will never be able to do this.

Yet, the neurology of our condition is such that there is much that joins autistics in common cause. What we share is more important than what makes us different from each other.

We all suffer (and I use that word advisedly) from sensory overload issues. We all face enormous challenges when it comes time for transitions, whether it be in moving from one part of the day to the next, or in moving on to the next phase of our lives. We all share the frustrations of living in an alien world, as we try to achieve our own aspirations, whether those aspirations involve simply getting from one end of the day to the other, or in achieving some cherished life goal.

We all take pride where we can find pride. We all endure suffering when we must. We all struggle as best we can. We all rejoice over our accomplishments, both big and small. We are all unique. There is no way to compare the subjective experience of one person with that of another.

I thank you all for being here today to support me and to support the dream and the work of the Commission. I want nothing more, and nothing less, than to see that future generations of autistic individuals do not have to endure quite as much agony as I did in my time. I had to learn, through trial and error, how to get by in this incomprehensible world. We can, and we MUST do a better job of providing support for autistic people and to those who care for them.

Again, thank you for being here, to share in this dream. Because,

You’ve Got to Have A Dream!

If you don’t have a dream

How you gonna have a dream come true?

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