Renee Gordon speaks out on raising her adult autistic son. Part 2

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? This is part 2 of our interview with Renee Gordon. Part 1 can be found here.

Renee had been working full-time until Alex started the early intervention program but had to stop work in order to devote her energies to Alex’s therapies.

“I am an attorney and my husband is a physician at Johns Hopkins where he researches, among other things, speech and language. Our energies become totally focused on Alex. Our social life dwindled away as our time was spent on Alex’s therapies. Most parents of normally-developing children do not understand the demands of raising a special needs child, or how difficult it was to try to engage such children socially We gradually lost contact with any friends who had normally-developing children of Alex’s age.”

Photo courtesy of Renee Gordon

Photo courtesy of Renee Gordon

Renee told us that it soon became apparent that the Lovaas program was not able to get Alex to speak. They realized that Alex would remain non-verbal.

“So, together Barry and I modified our at-home program to focus on two areas that we thought were critical for Alex’s development – a meaningful system of communication since Alex is non-verbal and a socialization program that would teach Alex to go out into the community. We used the ABA approach with the system of positive reinforcers. We would continue our at-home program for the next 15 years.”

During this time in their lives, Renee and Barry soon came to realize that Alex could read, and they used that skill to build upon the communication skills that he had already acquired. This led to Alex being able to use today an iPhone with a specialized app that allows him to type and to then press the screen so the iPhone speaks aloud what he has typed.
“He wears his iPhone on a lanyard around his neck so that it is readily available to him. We’ve also always had a computer on at the house so Alex, who can also type, can communicate by typing on the computer.”

To help Alex with regards to socialization they started by taking him to fast-food restaurants at ‘off-times’ and taking him to shopping malls. This eventually led to going to the movies, grocery stores, and even bowling.

Photo courtesy of Renee Gordon

Photo courtesy of Renee Gordon

“Today Alex is able to go into the community and act appropriately. We regularly take him to restaurants where he is able to wait for a table and use his iPhone to order and able to wait for his meal. He enjoys going to museums, the Aquarium and Science Center in Baltimore and has been to New York on several occasions. He has even attended a Broadway play – The Lion King – which he thoroughly enjoyed.”

We asked Renee when Alex received his autism diagnosis. She told us:

“When Alex received his diagnosis of autism, he was four-years old. By that time, we knew he was autistic and the diagnosis was a formality for getting Alex the special education services he needed.”

When Alex was 13, they moved him to a school for individuals with a variety of cognitive impairments.

“We felt that he needed to be around non-autistic individuals so that he could learn from them. In addition, the new school provided a better vocational program. In the end, it proved to be a wise move as Alex interacted far more with his school mates and developed better socialization skills.”

What help and support did you as a family receive when Alex was younger?

Photo courtesy of Renee Gordon

Photo courtesy of Renee Gordon

“We received no support other than the special education that Alex was entitled to under U.S. Federal law. When Alex’s education was ending, we did start receiving social services support in locating an appropriate post-education placement for Alex. I must say, though, that we truly wandered in the wilderness experimenting with techniques that we thought would benefit Alex. We also wandered in the wilderness in locating a day habilitation program that would offer a meaningful day program for Alex. I spoke with many agencies to learn about their day programs, ultimately settling on his current day habilitation program. Sometimes our techniques worked, other times they failed and we had to start over. Through our early efforts with the Lovaas program, we learned ABA techniques that we continue to use with Alex, and it remains my firm belief that the ABA model is crucial as it provides a critical learning framework for autistic individuals like our Alex.”

Part 3 continues here.