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Why We’re Speaking Up for Parents of Children with Intellectual Disabilities

Why We’re Speaking Up for Parents of Children with Intellectual Disabilities

By Tony Snell | Timothy Shriver
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On the surface, we may look like we walk very different paths. Tony Snell is a professional basketball player and nine-year NBA veteran. Tim Shriver is Chairman of the Special Olympics Board of Directors. Today, we're joining our voices as fathers, speaking out in defense of parents of young children with autism.

Rearing a child is one of the most demanding 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 you're poor or a person 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 journey with autism started with his two sons, Karter, 3, and Kenzo, 2. The autism diagnoses they received last year led to a surprising diagnosis of his own, one that was somehow reassuring.

“Learning I have autism spectrum disorder (ASD) helped me understand my whole life” says Snell. “This is why I am the way I am.”

The term ASD covers a wide range of developmental difficulties. More commonly diagnosed in boys, ASD often causes delays in speaking and trouble with nonverbal communication and personal relationships, but it reveals gifts too such as defined focus, a strong sense of justice and exceptional critical thinking skills.

It's one thing to understand a condition. It's another to get help.

As Tony has seen with his two boys, early intervention matters. Special Olympics understands the urgency of early action. Since Tim joined the movement in 1996, Special Olympics has grown to use sports as the foundational cornerstone to transform all aspects of life for those with intellectual disabilities (ID). Our early childhood program, Young Athletes, brings children with and without ID together to play and grow starting in their early years. We’ve helped move the world from silence, separation, and denial to an age of powerful self-advocacy and far greater acceptance.

The prevalence of autism and similar conditions has risen in recent decades but the number of developmental pediatricians—trained to diagnose and treat conditions like ASD—has not.  

As experts have noted, this isn't an epidemic of autism. It's an "epidemic of need," even in countries like the U.S. and Britain. The Guardian reported in February that many young children in England with developmental disabilities face "a nightmarish system of appeals and tribunals to obtain support."

"It’s taboo in the black community to talk about your disability," Tony shares. "Having a disability is an unspoken thing. I want to normalize the concept that everyone’s brain is wired differently."

Over the years, Special Olympics has witnessed athletes showing up to events with inadequate care, heard from parents struggling to find doctors who would provide healthcare for their children; and spoken to healthcare professionals who said they lacked the training to help. Special Olympics set out to disrupt the healthcare industry for people with ID.

In 1997, Special Olympics Healthy Athletes was born. It offers free healthcare screenings by trained health professionals to Special Olympics athletes at events globally. Since then, Special Olympics has delivered over 2 million screenings, discovered undetected health problems with follow-up referrals, and trained 300,000 health professionals and students to better provide services people with ID.

But we haven’t done nearly enough, as Tony’s case and countless others demonstrate.

Tony and his wife Ashley are navigating raising two sweet boys with complex needs. Pediatricians haven’t always been helpful. Tony and Ashley have often had to track down providers and therapies by themselves. They keep hitting brick walls, like being told to wait 12 months for a pediatric MRI while tangling with insurers and clinicians and battling debilitating stigmas that feed on ignorance and lead to exclusion. 

Tony's ASD diagnosis was followed by a professional setback when he parted ways with the New Orleans Pelicans, just one year shy of the 10 years of NBA service that would have earned him lifetime medical coverage for his boys. NBA great Charles Barkley urged teams to give Tony one more shot, but none have responded. 

Tony hasn't lost focus — he's been keeping his game sharp with the Maine Celtics of the NBA's G League. Now he's proudly speaking out about autism and has joined Special Olympics in the battle for inclusive sports, healthcare, and education. No issue is more important than reducing fear of difference and building systems that treat each of us with dignity. In this work, we are united by the urgent need for change.

But we’re only just beginning. Today, the challenge is clear: We need an inclusion revolution - nothing less. We're speaking out so that when Karter and Kenzo are fine grown men, inclusion for people with ID will not be a struggle but, rather, a reality. Now is the time to ensure that future comes to life.

Timothy P. Shriver is Chairman of CASEL and Special Olympics. Tony Snell is a professional player in the NBA and the founder of the non-profit Tony Snell Foundation. To learn more about Tony’s story, tune into the latest episode of Inclusion Revolution Radio.

The views expressed in Sunday Paper Guest Opinions are those of the authors and do not represent the views or positions of The Sunday Paper.

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