News and Knowledge

Love cannot always overcome every obstacle that we meet. If anyone knows that, it is parents of children with autism. But love conquers those obstacles even when it cannot make them disappear. How? Through the power of parents like the fathers we profile in this Salute and the hundreds of fathers like them facing the challenges of autism every day and using their love and pride in their children to create wonderful lives for their families. That’s what being a father means and that’s what we salute proudly through these examples.

A Rich and Fulfilling Life

“My primary goal as a father is to help my son achieve the highest level of independence and happiness possible, says José David Rivera. “I want Joseph to live rich and fulfilling life, and I want to be there to help him along the way.”

As he works to make sure his son can live that life, Rivera has also stepped up to ensure that others who are facing the same challenges have the support and knowledge they need. “The autism journey is tough and challenging, even more so when we travel it alone. We are a community and need to be there for each other.” That’s why he has been a member of OAR’s RUN FOR AUTISM team since 2010 when he ran the Boston Marathon in Iraq, where he was deployed at the time, for OAR. Rivera is a West Point graduate and has been a U.S. Army officer for 19 years. He currently serves as a Deputy Brigade Commander in the Texas Army National Guard. He ran the Chicago Marathon after he returned and has since run for OAR in London, New York City, and Houston. He will run his first Marine Corps Marathon in October.

Rivera and his wife, Margaret, noticed early that there were some signs that their son, Joseph, may have autism. Since his diagnosis, Joseph, now 12, has improved greatly and developed into a very capable young man full of potential, his father notes proudly.

As a member of the military who has been deployed to Iraq, Afghanistan, and Kosovo, Rivera understands what it means to share the burdens and work as part of a team. “There are many of us on OAR’s team. I am a very tiny piece of a very large support enterprise. There are two gentlemen in the OAR family who inspire me to be a better father, a better member of the autism community, and a better RUN FOR AUTISM athlete, Jeff Rayburn and Petar Radulovic. They are my friends, running buddies, and textbook examples of what it means to be a great father.”

As his son nears his teenage years, Rivera considers what his son and his son’s autism peers will need to live productive and independent lives. “I consider transition services and opportunities to be of great need for the community. It may not be the biggest need. But, it certainly is for us, since we will face that challenge in the not too distant future.” He already sees promise in colleges that have dedicated facilities and programs, specifically for students in the spectrum. “It gives me great joy and hope for a future of greater understanding and inclusion. People on the spectrum want to contribute and be productive. I am glad more opportunities for education and employment are being created.”

Living and Breathing Autism

Joshua D. Feder, M.D., calls himself someone who “lives and breathes autism at home and at work.” He began his work with people with autism in 1979 while he was in college and went on to specialize in neurobehavioral medicine and application of developmental-relationship based approaches with families and in schools. His connection to autism became more personal when his son was diagnosed with autism in 1992 at the age of 2.

That diagnosis led him to learn about and use developmental approaches in his work, researching, teaching, and doing clinical work using developmental, mixed developmental-behavioral, and medication approaches. Today, he is an associate clinical professor in the department of psychiatry at the University of California at San Diego School of Medicine, where he does research in community-based participatory research in early developmental intervention and transition-aged youth. He is grateful that research has demonstrated that “regulation, engagement, and building on the ideas of people with autism is the single most effective and respectful approach to helping people build their own capacities for relating communicating, learning, and living a meaningful life, whatever the level of challenge.”

He also advocates for family access to evidence-based practices. He believes that what is most needed in the autism community right now is legislation to ensure that all families have access to “a wide range of evidence-based approaches so that there is better matching of treatment to family culture and values and so more likelihood of progress for those people and their families.”

“I am grateful to have had many mentors. In the autism community the late Stanley Greenspan, M.D., stands as the one with the vision, along with Serena Wieder, Ph.D., to make sense of and give useful direction to my thinking and my work. I credit the two of them with any success that I have had both personally and professionally. 

As he considers what the future holds for his son and others with autism, he hopes that they will be given the opportunity to develop their own ideas and internal motivation to have a better life. It boils down to respect and the ability to have self-determination. “Too often people make presumptions about the needs and wishes of others and seek to impose upon them pre-conceived ideas in the name of training and compliance.”

Moving Mountains

First diagnosed with Asperger Syndrome in 2000 at the same time as his oldest son, who was then four, Michael John Carley got busy. Very busy. He founded and served as the first executive director of GRASP, the largest organization comprised of adults on the autism spectrum. “The words ‘autism’ and ‘Asperger’s’ were pretty much synonymous with ‘screwed,’ and ‘incapable’ when my son and I were diagnosed. GRASP changed a lot of minds and showed people the ethical mistake we all make when we sacrifice possibility in the name of probability. GRASP showed the world that spectrum folks could create, grow, and sustain their own organization.” 

He went on to become the executive director of The Asperger Syndrome Training & Employment Partnership (ASTEP), which promotes the inclusion of individuals with Asperger Syndrome and similar autism spectrum profiles in competitive employment. He hopes that the future will bring more of that kind of inclusion and less focus on the “why” of autism. “I’d like to see services for people in the autism community increased and more service-linked research. Research on the genetics of autism won’t help the average, working-class family with a child with autism…for 20 years.”

Today, he is primarily focused on writing and consulting for schools from his family’s home base in Green Bay, Wisc. When, that is, he is not watching one of his sons’ baseball or hockey games or playing baseball himself. His first book, Asperger’s From the Inside Out: A Supportive and Practical Guide for Anyone with Asperger’s Syndrome, was published in 2008, and he has two more on the way, Unemployed on the Autism Spectrum and “Why Am I Afraid of Sex?” Building Sexual Confidence in the Autism Spectrum . . . and Beyond! He is also the author of the Huffington Post column, “Autism Without Fear.”

As Father’s Day approaches, Carley remembers his father, a Marine helicopter pilot, who was killed in action during the Vietnam War when Carley was 2. “More than enough evidence exists for me to be convinced of the unconditional love he had for my mother and me. I’m known for tough, more so than soft love approaches, but love is by far the most mountain-moving entity the human race knows of. I try to honor that every day.”