Renee Gordon speaks out on raising her adult autistic son. Part 1

Photo courtesy of Renee Gordon

Photo courtesy of Renee Gordon

Renée Gordon and Dr. Barry Gordon, Baltimore – On Sept. 30 PBS Newshour published an article by Renee and Barry Gordon entitled What can be done to help parents of autistic adults? The article can be read here.

In the article Renee Gordon, an attorney who is currently on the board of directors of The League for People with Disabilities in Baltimore, Maryland, documented her thoughts and feelings about caring for her adult autistic son, Alex aged 22. In the article she shared that life can at times be quite isolating and that caregivers, such as herself and her husband, are not given enough support both financially and physically.

We contacted Dr and Mrs Gordon and were able to ask some questions about their caring role, how services should be implemented for caregivers of vulnerable autistic adults and their future plans.

Renee first told us about life with Alex, when he was a baby.

Photo courtesy of Renee Gordon

Photo courtesy of Renee Gordon

“When Alex was six months old, his pediatrician noted that Alex was not meeting his developmental milestones. Alex was not sitting up, turning over or doing the other motor skills of a normal six-month old. At that time, Alex’s pediatrician began watching Alex more closely. Barry and I, in hindsight, recognized that Alex preferred to lie on his back rather than sit up and was not crawling or making any move to start crawling. At 12 months, our pediatrician referred Alex to a pediatric developmental specialist at the Kennedy Krieger Institute in Baltimore who diagnosed Alex with hypotonia, minor motor delay, and possible mild language delay. Even then, his visual skills were at age level. Alex then began physical therapy on a weekly basis. At the time, Alex was not making sounds or walking. He did, however, crawl in what we call a military crawl style – lying on his stomach and propelling himself forward by using his arms.”

Alex4

Photo courtesy of Renee Gordon

ix months later Alex was still not walking or talking, although he had made some improvement in motor skills. When he was seen by the same developmental specialist, hypotonia was still evident, and his speech delay was even clearer.

“At about 13 months, Alex made one sound – “ma ma ma”, but that stopped within about three months. Due to Alex’s gross motor, fine motor and speech delays, he was required, under United States federal law, to be placed in an early intervention program where he began receiving physical therapy, speech therapy and occupational therapy through Baltimore City, where we lived. We also continued with periodic visits to the Kennedy Krieger Institute where Alex had seen the pediatric developmental specialist. We saw numerous specialists but could never get an overall assessment of Alex’s condition and likely prognosis. Alex had several MRIs and an EEG; no abnormalities were found.”

During this period it was noted that Alex would focus on some tasks (such as putting animal cards in piles) and was not that attentive to people. The specialists noted that he had some “autistic-like features,” but autism itself was not brought up. Renee tells that her husband, Barry, even with his medical background, found that the medical literature on developmental delay couldn’t offer guidance on who might overcome such delays and who would continue to fall behind.

Alex5

Photo courtesy of Renee Gordon

“So, we were stymied and hoped that Alex would overcome this obstacle.”

Shortly before Alex’s third birthday he entered into a special education school. It was during this time that Renee joined a support group at the school and learned that most of the children in the school were autistic.”I had noted how similar Alex was to many of the children in the school and, subconsciously, realized that Alex was autistic. Through the support group, I learned of an ABA program known as the Lovaas method and we began that program with Alex at our home. We hired a coordinator with experience with the Lovaas program, posted signs at local colleges to hire college students, and started our own at-home Lovaas program.”

Part 2 of our interview with Renee Gordon continues here