Parents of Eating Disorder Patients Look to Past Autism Activism for Inspiration

Parent activism is what changed the field of autism. The eating disorder world needs the parents to step up, ally together and get active.
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If you want to change the world, study those who have done it before you.

Ruth Sullivan, a pioneer parent activist in the autism world, is one of my models for changing the eating disorder world. I'm proud to announce that she will be joining F.E.A.S.T. for the first international conference for parents of eating disorder patients. Why? Because the story of autism treatment is so similar to the eating disorder history that in many parts it is identical -- except that we are decades behind. We need to learn from that history, and from its leaders.

Eating disorders, like autism, were once believed to be a direct result of parenting pathology.

Parents of eating disorder patients, just as it happened with autism, more often than not have experienced a treatment provider system built around marginalizing and excluding loving families -- practices that did nothing to improve treatment and did great harm to all concerned.

Parent activism is what changed the field of autism. From a stigmatized, secretive family problem to widespread understanding and services (even Autism Awareness Days around the world), it took a parent movement -- assertive, brave, creative, persistent parents who allied together -- to make this happen. Here is where the eating disorder world lags behind: we haven't had that movement. As Dr. Thomas Insel, the Director of the National Institute of Mental Health, told me in 2007, the eating disorder world needs the parents to step up, ally together and get active.

We listened, and now we are.

Along with parents and professionals from around the world, Ruth Sullivan and Dr. Insel will be in Alexandria, Va. on Nov. 3 and 4, 2011 to celebrate and encourage the parent community around eating disorders. This event marks a historic moment. Taking inspiration from the pioneers before us, we look forward to creating a platform for those who will come afterward. No family should face an eating disorder, or autism, feeling isolated or powerless.

A 2008 magazine article describes Sullivan's journey to both understanding and activism:

Sullivan's activism began in 1963, when she was told that Joseph, then 3 and the fifth of her seven children, was autistic. Doctors warned her not to read anything on the topic because it would "only confuse" her. Sullivan ignored that advice, soon discovering why they'd discouraged her: Medical wisdom at the time held that autism was a mental illness caused by "refrigerator mothers," cold, unaffectionate women who failed to bond with their children. Sullivan, along with her English professor husband, rejected this theory. "It made no sense -- I was not a different mother to Joseph than I was to my other six children." So she set about changing those perceptions, founding ASA and eventually becoming the first autism activist to lobby Congress, an effort that culminated in the passage of the landmark Individuals with Disabilities Education Act in 1975, which guaranteed a free public education to all U.S. children, even those with disabilities.

All parents owe Ruth Sullivan and other activists like her a debt of gratitude and a responsibility to learn from her experience. We are powerful, especially as a group -- but each of us has to take our place in that work. We are right to stand beside our loved ones, and beside other families, in treatment and in advocacy.

In 2009, reflecting back on 50 years of service, Ruth Sullivan was quoted as saying, "I have found that there is a goodness about people you can tap into. I've learned that sharing information is one of the most important and powerful things you can do. We can all bring about important changes, one individual at a time."