July 20, 2011
By Robert Naseef, Ph.D.
Times are changing, but most men have still been raised to hold in their emotions or risk ridicule. On Thursday, July 7, I had the privilege of moderating a panel on fatherhood at the 42nd annual Autism Society National Conference. The panel was made up of fathers with the courage to open up, along with autistic self-advocates and service providers.
As the fathers opened up, men and women in the audience listened intently. I shared how hard I had tried to change my son, Tariq, now 31. In the end, it was he who changed me and made me the father and man I needed to be.
Charles Jones shared his sadness and confusion about the diagnosis, his love for his son Malik and his joy in Malik’s progress. Charles is determined to make a difference in raising awareness about the needs of fathers. His voice came through with passion in the teaser for his documentary in production—“Autistic Like Me.”
Ven Squenzia is the father of a young woman with autism and president of the Florida chapter of the Autism Society. Ven cannot imagine who he would be today if his daughter, Amy, did not have autism. He is a tireless advocate for families, with countless friends and acquaintances in the autism community. He read a poem by his daughter expressing her love.
Dr. Stephen Shore, non-verbal until age 4, has fond remembrances of his father. Today, he is a professor of special education at Adelphi University and travels the world building autism awareness. He credits both of his parents for believing in him, although he wished his father had gotten more involved with his special interests in his youth. He also mentioned that when he was young, his father’s beard felt like needles and created what Stephen referred to as a sensory violation. Stephen’s web home is http://www.autismasperger.net/.
Alex Plank was diagnosed with Asperger’s at age 9. He is the creator of www.wrongplanet.net, a social networking site for people with Asperger’s, which has over 52,000 members. Alex shared some of his social struggles growing up with good humor. Like many young men on the spectrum I know, he wished his father had been more helpful to him about how to begin dating.
Craig Gibson spoke as a triple agent. He grew up with a learning disability, and openly shared how he was mercilessly bullied and how he relates to fathers’ worries about their children. He also has a son with a speech delay, and has served as the lead evaluator for a preschool program for children with special needs. Craig blogs regularly at www.autismspot.com and www.sensoryspot.com.
Dr. Diane Adreon has an adult son with autism and over 30 years’ experience working with children and adults with autism at CARD, the Center for Autism and Related Disabilities in Miami. She talked about the important leadership roles played by fathers in the autism community of south Florida. These men were open and comfortable speaking to her.
Speaking on behalf of the panel, I expressed gratitude for the opportunity for our voices to be heard. When fathers open up, everyone benefits. We will continue to express our vulnerable feelings and encourage others to do the same to help meet the needs of children and families.
Topics:Living with Autism
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