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 3 of our interview with Renee Gordon. Part 1 can be found here.
We then asked Renee if she could tell us a little about home life
“Our home life, like so many families with an autistic child, is chaotic and isolated from other families and friends. Alex is very schedule-bound so our home life runs according to Alex’s schedule in order to minimize his anxiety. For example, Alex expects dinner at 6:30 and cannot tolerate dinner a minute past 6:30. There are many things that Alex must do and we have had to force him to do those things, with the resulting typical autistic meltdowns. I have learned, though, that where possible, I try to give Alex some control over his environment and so we have adjusted our home life to his rigid routine. Having a child with this rigidity who requires 24/7 care means, though, that we don’t take family vacations and nothing that we do or that Barry and I can do as a couple can be done on a whim. Everything requires careful planning and many times, caregivers.”
Renee told that she did eventually go back to work full-time after being home with Alex for over five years, which was a positive move for her own well-being.
“It meant, however, that we had to have au pairs and, as Alex got older, caregivers for the hours when Alex wasn’t in school until his father or I came home from work. This alleviated a tremendous amount of stress in that we had another pair of hands to help watch Alex after school, give him a shower and feed him dinner.”
Alex as you mention in your article is now 22 and has finished education. Is Alex in residential care full or part time, or at home with you both?
“Today, Alex participates in a day habilitation program where he is learning life skills and goes out into the community. His program offers a physical education piece as well as volunteer work out in the community. Perhaps, one day he will develop a skill that will allow him to become employed as he learned clerical skills at his last school and his current day habilitation program is part of an agency that has a printing business.”
Renee then went on to explain that a couple of months ago, Alex moved into a group home with two wonderful housemates, neither of whom are autistic and both of whom are verbal.
“We are among the fortunate few in having Alex in a group home, although it did take a disastrous event that lead to his placement in a group home. Alex has adjusted well to the group home and interacts, somewhat, with his housemates. After 22 years of caring for Alex, it is a huge adjustment for Barry and me. We do see Alex on occasional weekends, but we are still trying to adjust to life without the many constraints that we lived under for so very long.”
What are your hopes for Alex’s future?
“My one hope is that he has an enjoyable life. I do not expect a cure for autism in his lifetime so I deal with the practicalities of life today for autistic individuals and I want him to be happy. Would I like him to be verbal? Of course, selfishly, I would like to hear his voice, hear him say “Mommy”, “Daddy”, “I love you”. But, from a practical perspective, I want him to be able to communicate in whatever mode allows him to make his wishes known.”
We asked Renee if she had a final message for our readers.
“I do believe that parents of children with autism, especially those children who are adolescents and adults, need to adjust their thinking and focus on what we can do for these individuals today instead of focusing solely on finding a cure. While finding a cure is very important, we cannot leave these individuals with autism to exist in a vacuum awaiting a cure. As parents, we need to band together, both geographically and by the level of autism of our children, to develop a consensus as to what is best for the groups of adults with autism at various points on the autism spectrum and then we need to make it happen. Personally, I would like to see the more widely known groups championing autism around the world to take a greater step forward in initiating change for parents of adults with autism and the adults with autism. We can pave the way for those behind us.”
We would like to thank Renee Gordon for taking the time to share her thoughts and feelings with us. There needs to be more help and services available for vulnerable young autistic adults. Talking about these issues is a good start.