On the surface, we may seem to be on very different paths. Tony Snell is a professional basketball player and nine-year NBA veteran. Tim Shriver is the Chairman of the Board of Directors for Special Olympics. Today, we join our voices as fathers, speaking out to advocate for parents of young children with autism.
Raising a child is one of the toughest jobs there is. But for millions of parents of children with autism and other developmental disabilities, finding the right care at the right time can mean years of struggle, especially if they’re poor or people of color. It doesn’t matter who you are or what you have; the struggle is universal, and we want to change that.
For Tony, 32, his battle with autism began with his two sons, Carter, 3, and Kenzo, 2. Their autism diagnoses last year came as both a surprise and, in some ways, a relief for him.
“Knowing I have ASD has helped me understand my whole life,” Snell said. “This is why I am who I am.”
The term ASD covers a wide range of developmental disorders. It is more commonly diagnosed in boys and often causes speech delays, non-verbal communication and relationship problems, but it also displays gifts such as clear focus, a strong sense of justice and exceptional critical thinking skills.
Understanding a condition and getting help are two different things.
As Tony experienced with his two sons, early intervention is key. Special Olympics understands the urgency of early action. Since Tim joined the movement in 1996, Special Olympics has come to use sports as the foundation to change every aspect of the lives of people with intellectual disabilities (ID). Our early childhood program, Young Athletes, provides opportunities for children with and without intellectual disabilities to play and grow together from an early age. We have helped move the world from an era of silence, separation and denial to an era of powerful assertiveness and much greater acceptance.
Although the prevalence of autism and similar conditions has increased in recent decades, the number of developmental pediatricians trained to diagnose and treat conditions like ASD has not increased.
As experts point out, this isn’t an autism epidemic; even in countries like the US and UK, this is an “epidemic of need.” The Guardian reported in February that many young children in England with developmental disabilities face “a nightmarish appeals and tribunal system to get help.”
“In the black community, it’s taboo to talk about your disability,” Tony says. “It’s unspoken that you have a disability. I want to normalize the idea that everyone’s brains are wired differently.”
Over the years, Special Olympics has witnessed athletes compete without adequate care, heard the stories of parents struggling to find doctors to care for their children, and spoken to medical professionals who said they weren’t trained to help. Special Olympics set out to revolutionize the medical industry for people with intellectual disabilities.
In 1997, Special Olympics Healthy Athletes was born, a program that provides Special Olympics athletes with free health screenings by trained medical professionals at events around the world. Since then, Special Olympics has administered more than 2 million tests, tracked and uncovered health problems, and trained 300,000 medical professionals and students to better serve people with intellectual disabilities.
But as Tony’s case and countless others show, we are not doing enough.
Tony and his wife, Ashley, are struggling to raise two beautiful boys with complex needs. Pediatricians aren’t always helpful, and Tony and Ashley have often had to find providers and treatments on their own. They continually run into obstacles like being told to wait 12 months for a pediatric MRI, fight insurance companies and clinicians, and contend with a severe stigma that feeds on ignorance and leads to exclusion.
Tony suffered a professional setback after being diagnosed with autism, leading to him leaving the New Orleans Pelicans. He was one year away from retiring after a decade in the NBA that would have given him lifetime medical coverage for his sons. NBA great Charles Barkley urged teams to give Tony another chance, but no team responded.
Tony hasn’t lost focus. He continues to hone his game with the Main Celtics in the NBA G League. He now proudly speaks out about autism and participates in the Special Olympics, which strives for inclusion in sports, healthcare and education. No issue is more important than reducing the fear of difference and building a system that treats each of us with dignity. In this work, we are united in the recognition that change is urgent.
But we are only just getting started. Today, the challenge is clear. We need an inclusion revolution. Nothing less. We are speaking out to ensure that when Carter and Kenzo grow up to be successful adults, inclusion of people with intellectual disabilities will be a reality, not a struggle. Now is the time to make that future a reality.
Timothy P. Shriver is the president of CASEL and Special Olympics. Tony Snell is a professional NBA player and founder of the nonprofit Tony Snell Foundation. To hear more about Tony’s story, listen to the latest episode of Inclusion Revolution Radio.