Why I Support SafeMinds and Hope You Will Too
By Katie Wright, SafeMinds Board Member
In 2005, I read about 20 books about autism. All the authors wrote about autism being entirely genetic and present at birth. Almost none described the kind of autism my son was experiencing. My son Christian was a bright, affectionate, and typical toddler. He had hundreds of words. After a few adverse vaccine reactions and ensuing chronic illnesses, he regressed rapidly into autism. By the age of 2.5, Christian no longer spoke and would lose every word he ever had. Instead of playing with toys, he would run in circles all day screaming, stopping only to try to bang his head on the floor. Christian was unable to sleep through the night for the next five years. Suddenly, my son was severely autistic.
One of the few books that described my son’s trajectory into autism was David Kirby’s “Evidence of Harm.” The book followed the efforts of a group of autism parents in their endeavors to uncover the environmental triggers of autism, especially regressive autism. These parents, Sallie Bernard, Heidi Schulman Kidd, Laura Bono, Lyn Redwood, Mark Blaxill, and more created SafeMinds. Like me, they saw their toddlers experience severe adverse vaccine reactions followed by a rapid descent into autism. SafeMinds endeavored to do what no other autism spectrum disorder (ASD) groups had done–aggressively pursue environmental causation factors and demand access the U.S. Centers for Disease Control and Prevention’s (CDC) data on vaccine safety.
Today, Lisa Wiederlight is the executive director of SafeMinds. Lisa is every bit as incredible as SafeMinds original founders. I have spent years working in nonprofits, and was present at the beginning of Autism Speaks and the end of NAAR. The well-compensated president of those autism interest groups works 1/10 th as hard as Lisa, and gets paid 10x as much. SafeMinds does not accept corporate or pharma money, but relies on the donations of parents. I know that many of the parents in our community were wealthy before autism. I guarantee you, none are today! Autism is so expensive, therefore SafeMinds is a lean organization, with 1.5 paid employees and a dozen volunteers. There is no waste, no ego-driven research, no compromised collaborations with the CDC, just honest environmental science.
I admired the SafeMinds founders so much because they persevered in the face of overwhelming opposition. When the CDC refused to allow access to taxpayer-funded vaccine safety studies, SafeMinds filed Freedom of Information Act documents, and actively lobbied Congress for more accountability and transparency at the CDC.
SafeMinds was one of very few organizations to lobby for research into the causes of regressive autism. Throughout the 1990s and 2000s, the CDC, the National Institute of Health (NIH), and academia were strident in their belief that parents were creating an ASD subtype that did not exist. The autism research world dismissed the experiences of these families. The mere idea that autism was not wholly genetic and not determined in utero was crazy. The political implications of finding post-natal environmental causation agents was alarming. SafeMinds parents demanded access to governmental research. Access was suppressed for many years, but SafeMinds persevered.
SafeMinds is not a political organization. It is about following the science.
Today SafeMinds’ mission has grown even larger. We are addressing one of the scariest challenges in raising a severely autistic child–wandering. People with severe autism often have little awareness of danger, and can be easily distracted by something that appeals to them: water, music, cars, etc. A parent can literally turn his/her back for a moment to unlock a door, and his/her child with severe autism can run in the opposite direction. Despite their intellectual challenges, our children are usually strong and fast. My son easily outruns me.
First responders, schools, and other community organizations did not know the best way to recover a lost autistic child. Yelling their name, for example doesn’t often work. It is important that community service providers and law enforcement know to inspect nearby pools or any body of water immediately. After the tragic death of Avonte Oquendo, a New York City teenager with autism who wandered out from school and was found dead in a nearby river, Lisa was soon at the forefront of advocacy for Avonte’s Law, later known as Kevin and Avonte’s Law. This Federal law provides families facing autism the opportunity to give their children who are repeat wanderers non-invasive, non-permanent, and wearable locative devices. It provides first responders, school, and other community organizations with funds to get the training they need to prevent and address wandering in people with developmental disabilities.
Lisa spent years shepherding this bill through the House and the Senate, in partnership with the National Autism Association (NAA). This type of collaboration is unfortunately so rare in the autism community. By way of example, she worked with NAA to organize a briefing on Capitol Hill for congressional staff, emailed countless staffers to get their support of the legislation, visited numerous congressional offices to advocate for the bill, and brought multiple jurisdictions’ public safety officers to the Hill with Project Lifesaver technology to implore staffers for their support. This bill will save children’s lives, and it became law in large part due to the efforts of Lisa Wiederlight of SafeMinds.
SafeMinds regularly advocates for our families. At NIH’s Interagency Autism Coordinating Committee (IACC) meetings. Lisa urges the Federal Government to fund more relevant and usable science. SafeMinds asks for research that will help our children have a better quality of life, rather than mainly the basic science work the NIH prefers. Lisa is a very persuasive speaker who can easily answer any question put to her by the Committee.
SafeMinds is a unique organization in that it focuses heavily on the unmet needs of our most vulnerable population–severely and medically-affected people with autism. SafeMinds has educated the IACC about the vastly-reduced life expectancy of a people with autism, which is mainly driven by suicide, wandering, and seizures. My son and Lisa’s son share an all too common condition–intractable epilepsy. It is a terrifying, often deadly, disorder that has been ignored by the NIH for too long. SafeMinds has been instrumental in raising awareness of the need for research on treatments for intractable epilepsy, as well as the need for research into and treatments for self-injurious behavior and GI disease. These terrible conditions affect the majority of the severely autistic population.
SafeMinds is one of the few autism organizations focusing on efficacy and accountability as they relate to the Federal Government’s failed response to the autism crisis. The autism community fought long and hard to double the autism research budget in 2008. Sadly, the majority of that money has been spent on dead-end basic science projects or endlessly-redundant (“learn the signs of autism”) research. Lisa wondered if a diverse group of stakeholders outside SafeMinds felt progress was being made via the IACC. This is another reason I love SafeMinds. Unlike the NIH, SafeMinds gives our families a voice and solicits our opinions.
With little money and endless hours of hard work, Lisa created a stakeholder satisfaction survey for people with ASD, their parents, and caregivers. SafeMinds collaborated with Age of Autism, Autism Action Network, Talk About Curing Autism, and The Thinking Mom’s Revolution to blanket the autism community with the survey. Within a month, 1,405 completed surveys were returned to SafeMinds. The results speak for themselves. The IACC is an utter disappointment.
The people at the NIH who spend our money are appointed, not elected. As a result, they seem to go out of their way NOT to engage with the public. SafeMinds, in collaboration with the leadership of Talk About Curing Autism and The Thinking Mom’s Revolution, tried for months to get a meeting with Dr. Anne Wagner, the Federal autism coordinator at the U.S. Department of Health and Human Services (HHS). Dr. Wagner refused to meet with these national autism groups. In contrast, U.S. Senator Chuck Schumer has 10 million constituents. I was upset about the underfunding of mass transit in NYC, and was given an appointment to speak with an aide the next day! But the Federal autism coordinator at HHS will not even consider sending an aide to hear the concerns of thousands of autism families. How many requests can she possibly get? Aren’t 50,000+ autism stakeholders worth a half an hour of Dr. Wagner’s time? Apparently not to the NIH.
Please read the extraordinary results of the survey and see what a difference SafeMinds is making. SafeMinds, though Lisa’s advocacy efforts, speaks for the autism families ignored by the NIH, and draws critical attention to the vast unmet and urgent needs of people with autism and their families. SafeMinds also presents a guide to more high-priority research that will improve the lives of autistic people living now.
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