On the Road to Autism Insurance Reform: Reflections on Memorial Day

Tuesday, May 27, 2014 View Comments

Lorri Unumb, vice president of state government affairs for Autism Speaks, travels the country advocating for families and individuals facing the challenges of autism. This is her ongoing series "On The Road For Autism Reform."

I’m writing from my backyard where I’ve been sitting in the warm South Carolina sunshine trying not to think about work on Memorial Day.  I am unsuccessful. The two subjects – work and Memorial Day – are inextricably intertwined for me. 

I’ve made my career advocating for better laws to help protect individuals with autism.  I spend my days proposing legislation, rallying families in support, writing letters to the editor, testifying at public hearings, and meeting with high-level officials about needed reforms related to autism. I regularly petition our government for change, and I routinely express my disagreement with current law. 

As the daughter of a World War II veteran, I know so well how lucky I am to be able to engage in these activities and even make a career of them.  Advocating for political change makes me feel like I am helping, in some small way, my 13-year-old son who is unable to express his own needs.

Over the past year, I have worked with several autism families and advocates in other countries, some of whom do not share the same freedoms that we enjoy in the United States.  I have seen that real reforms and better services are not likely to ever occur where speech is suppressed and families are silenced.  I spent a few weeks with an autism advocate from a former Soviet republic, who has tried to orchestrate basic rallies at which autism families in his country can raise awareness about autism and express their needs.  Rally after rally has been cancelled, as families back out because they are afraid to speak up. 

In the United States, we enjoy not only the right to speak, but also the right to criticize, to propose change, and to sit at the table with decision-makers in our state and federal governments.  For that I am truly grateful.  That right did not come cheaply.  On this day especially, I thank the men and women who have served our country; who have fought courageously and who have risked, and too often given, their lives, so that I can speak up and advocate openly for the needs of my son and many others like him.