Guest post by Ron Suskind, Pulitzer Prize-winning journalist and author of Life, Animated, his newly published memoir of his and his wife’s 20-year journey connecting with their son Owen, who has autism.
We needed to call it something.
So a while back, my wife, Cornelia, and I came up with the term “affinity therapy.”
It seemed better than “Disney Therapy.” Though our son’s chosen affinity was that company’s animated fare, we saw kids with other, equally intense passions – Thomas the Tank Engine, Anime, maps. Just recently, a parent told me her son was an expert on black-and-white movies from the 40s and 50s.
As for Owen, he watched Disney – those late 80s, early 90s hits such as “The Little Mermaid,” “Beauty and the Beast” and “Aladdin” – before the full expression of his autism, just shy of his third birthday. After the onset, when he lost all speech, they seemed to become his lifeboat.
We were terrified. Owen, many years later, told us he was too; that his loss of speech, or the ability to understand it, was “weird” and “worrisome,” and the movies were his comfort.
That was 20 years ago, and yesterday it felt like an unfathomably long time ago, as Cornelia and I read the New York Times story discussing the launch of an international research initiative to study “affinity therapy” and ways to harness it as a therapeutic method.
The study – led by researchers at Yale, MIT and England’s Cambridge University – will compare outcomes of a group of 4 to 6 year olds who have autism and will receive a therapy program much like what we describe in our book, Life, Animated. The study will use favorite movies and shows as the framework to encourage role playing and social interaction. For comparison, another group of children with autism will receive an equal amount of therapeutic attention using the more traditional Floortime approach, which follows a child’s interests through the therapy session.
Kevin Pelphrey, who’s leading the Yale team, wrote this in a scientific project description he sent me a few weeks ago:
Owen uses this understanding like an Enigma machine to help decipher the otherwise incomprehensible social world. Recognizing this, Owen’s family has embraced his affinity in developing a therapeutic approach that has helped Owen to achieve a remarkable level of social and adaptive functioning despite his diagnosis of severe autism spectrum disorder (ASD). The approach pioneered by Owen and his family will inform the development of a more general “affinity therapy” for the core social communication deficits in ASD. Via an experimental therapeutics approach, we will develop a manualized version of affinity therapy. Ultimately, our goal will be to utilize cognitive neuroscience methods to develop, refine, and disseminate an empirically validated, behavioral treatment for children with ASD that improves social communication skills by leveraging individualized core affinities, interests that tap into the reward circuitry that normally supports social motivation and social learning.
Cornelia and I are not doctors or neuroscientists. We’re parents, doing what hundreds of ASD parents we’ve met are doing – everything we can to connect with our child.
If what we stumbled into across two decades of trial and error (mostly error) can provide assistance to individuals with autism, their parents, siblings, relatives, friends or the therapists who work them . . . well, it would be a dream come true.
Owen has helped us with that -- dreaming, that is. He just turned 23 and is moving forward in his life – slow, steady and sure. He will always be autistic. This is, after all, a way of being. And we know he has many challenges ahead. But by re-engineering his favorite characters – Merlin, Rafiki, Jiminy Cricket – he’s taught us the wisdom of the sidekick who helps others fulfill their destinies. In this way, he says, “they find the qualities of the hero within themselves.”
It’s a powerful concept. That, at our best, we are all sidekicks – searching for our hidden capacities – and that heroism is a choice.
There are so many parents and kids out there – researchers, doctors and therapists, too – who know just what Owen’s talking about.