You may have seen recent headlines generated by the controversial French film, The Wall, which highlights the persistence of inappropriate autism treatments in France. There, families with a child who has autism are often offered outdated psychoanalytical therapies based on the widely debunked Freudian idea that autism results from being raised by an emotionally cold mother (the so-called “refrigerator mom” theory of autism).
The persistence of such ineffective treatments and outdated attitudes reminds us of the need to continually educate the public and the world medical community of the effectiveness of modern therapies for autism—including behavioral interventions such as Applied Behavioral Analysis. For more information, please see the “How Is Autism Treated?” page of the Autism Speaks website and Autism Speaks’ 100 Day Kit, created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism.
I still remember the day in 2009 when I was sitting in the committee hearing room of our state capitol. We were waiting for the next parent to testify in favor of our Autism Insurance Reform bill—in its second year of battle here in Missouri. Many moms and dads sat in the back with me, clutching their note cards, printed testimonials and handwritten pages. Though we were all nervous, we were eager to tell our stories to the legislators whose decision could make such a huge difference in our children’s lives.
Megan was a local volunteer, autism advocate and parent of two children, one of whom (Henry) has autism. Her hands were shaking a little, but she delivered her message in a calm and confident voice. She was confident the legislators would respond to her personal testimony. Megan explained that she was in extreme debt, had declared bankruptcy and had to sell her home—all to pay for Henry’s autism behavioral treatment. But Megan was not there to complain. She wanted to share Henry’s progress and positive outcomes. Thanks to more than 20 hours a week of early behavioral intervention, Henry had uttered his first words. She told the legislators that her financial sacrifices were well worth that precious reward. But she asked that other families not have to sell their homes and declare bankruptcy for their children to receive treatment for autism. I was not the only one wiping tears at the end of her story.
But the next individual who testified opposed our Autism Insurance Bill. He represented an insurance provider, and he used the same argument that insurance lobbyists were feeding the legislators across the country. “Although we empathize with Megan’s struggle,” he said, “the simple fact is that behavioral therapy is an experimental treatment for autism.” He said it was reckless for insurance providers to pay for experimental therapies and that despite Henry’s improvement, there was no predicting whether other children would benefit.
His words produced gasps around the room. My heart sank.
But wait, this is where the story gets good. Next, Lorri Unumb, Autism Speaks vice president for state government affairs, took the stand. She too shared the progress of her son from intensive applied behavioral analysis (ABA). But it was the next part of her testimonial that every legislator in the room heard loud and clear.
Countering the insurance industry testimony head-on, Lorri stated unequivocally, “ABA is not experimental!” And she had the published research studies to back up her statement.
It didn’t matter whether the studies were done in Missouri or another state. Each study had been vetted and published by a leading scientific journal. The evidence made clear that ABA is far from experimental, and it demonstrated the importance of early intervention in producing the most successful outcomes.
The Missouri House of Representatives voted our bill out of committee that day. It went on to our governor’s desk to be signed into law—all because we had the scientific research to back up our efforts.
Never before had the importance of funding research become so clear to me!
Currently Autism Speaks is funding additional studies that can provide a firm foundation for our advocating that insurers cover additional types of behavioral therapy–such as social skills training, infant-toddler interventions and cognitive behavioral therapies focused on social and communication skills.
And that’s crucial because the downside to our story was that the Missouri bill mandated coverage for some but not all autism treatments. Many more treatment options need to be further investigated to ensure they are safe and produce tangible benefits for those who struggle with autism.
The great news is that Autism Speaks just funded $1.8 million in treatment grants that will further our understanding of the most promising new interventions—not only for children but for all those on the spectrum—from early intervention therapies in underserved communities to job interview training for adults.
We look to these studies to give us the ammunition we’ll need the next time we are sitting in front of a room full of government decision makers. And they would not be possible without your support at our Walks and other fundraisers.
When it comes to helping our children and all those with autism, scientific evidence of benefit puts us on the road to affordable access to therapy. And that means better outcomes. This is what our families deserve and our mission supports.
Autism Speaks continues to work for state-mandated medical coverage for autism interventions. To date, its advocacy efforts have helped secure autism insurance reform laws in 29 states. To learn more about Autism Speaks advocacy efforts, please visit http://www.autismvotes.org.
For more news and perspective, please visit the Autism Speaks science page.
For the fourth year in a row Autism Speaks brought together first spouses and esteemed dignitaries, including ministers of health, from more than 30 countries around the globe for the Fourth Annual World Focus on Autism. The event, held on Tuesday, September 20, 2011, was part of an ongoing effort to raise global awareness and share best practices for countries, communities and families struggling with this non-discriminative disorder.
Mrs. Ban Soon-taek, wife of the U.N. Secretary-General, Ban Ki-moon, in her fourth year of attendance joined event hosts Suzanne and Bob Wright of Autism Speaks. Additional distinguished guests included event Co-host Dr. Cecelia McCarton, executive director and founder of The McCarton Foundation and the McCarton School, and emcee Sue Herera of CNBC’s “Power Lunch.”
Attendees convened at The McCarton School, which provides an educational program for children with autism by using an integrated one-to-one model of therapy grounded in Applied Behavioral Analysis (ABA) combined with speech and language therapy, motor skills training and peer interaction. “This school has given so much to our children with autism, and we wanted each of you to experience it firsthand today,” said Suzanne Wright. “It’s here under this roof that the meticulous work to connect with our children with autism takes place.”
United in a global cause, a record number of dignitaries attended, including the first spouses of Albania, the Republic of Cyprus, Finland, Grenada, Jamaica, the Republic of the Maldives, the Republic of the Marshall Islands, Namibia, Nigeria, the Republic of Palau, Saint Lucia, Saint Vincent and the Grenadines, Slovenia, Sri Lanka, and Turkey.
Guests toured the school and met with students, who made glass bead necklaces for the visiting first spouses. Later, the dignitaries assembled to learn about Autism Speaks’ global initiatives – including the annual World Autism Awareness Day celebrated on April 2 and Autism Speaks’ Light it Up Blue campaign; as well as Autism Speaks’ Global Autism Public Health (GAPH) initiative. GAPH initiatives championed by individual countries, as well as regional efforts including the South-East European Autism Network (SEAN) and the South Asian Autism Network (SAAN) were highlighted during the event.
In her opening remarks, Mrs. Ban Soon-taek welcomed the international group on behalf of her husband U.N. Secretary-General Ban Ki-moon stating, “autism touches so many in the world, no matter where they live, no matter how much money they have, no matter their religion, no matter their gender. And like a pebble in a pond, the effects of autism ripple outward to parents, siblings, and caregivers. Autism is at once deeply personal and truly global.”
Speakers at the event included distinguished guests Dr. Liri Berisha, spouse of the Prime Minister of Albania; Dr. Ante Zvonimir Golem, Croatia’s State Secretary for Health and Social Welfare; Professor Saima Wazed Hossain, daughter of the Prime Minister of Bangladesh; and Professor A.F.M. Ruhal Haque, MP, F.R.C.S, Bangladesh’s Minister of Health and Family Welfare; as well as Autism Speaks Vice President of Scientific Affairs Dr. Andy Shih. Each speaker offered remarks on the significance of fostering global partnerships in combating the global public health crisis of autism.
‘World’s First Ladies Take on Autism’ in the The Wall Street Journal.