Interview with Barbara Wells
Conducted by David Celiberti, PhD, BCBA-D
President, Association for Science in Autism Treatment
The autism community knows very well that significant outcomes are achieved when parents and professionals work in partnership. ASAT is no exception. In fact, parents played a significant role in the creation of ASAT over 10 years ago. Currently, ASAT has five wonderful parents on our board and I recently had the opportunity to interview one of them. Barbara Wells has served on the ASAT Board for four years.
Q: Barbara, I am delighted to have this opportunity to interview you. Before we talk specifically about ASAT, can you tell us a little about your family?
A: I am a single mom with three kids ages 29, 24 and 18. My oldest is a marine who just returned from Afghanistan. My daughter graduated in May from Temple University with her BS in Social Work. She is currently a social worker for Princeton Hospital. My youngest, who has autism, recently turned 18 and attends a public school. I am in the process of applying for guardianship for him.
Q: We thank you and your son for his service to our country. I understand that you recently participated in a marathon that tied in at least two aspects of your family life. What led you to take this on?
A: I try to stay as healthy as possible which helps me deal with the daily stress of being a single parent with a child diagnosed with autism. I started running because it was an exercise that I could fit in when I had the time and there was very little expense. Linda Meyer, Executive Director of Autism New Jersey, has been my mentor and she ran her first marathon when she was 50. She challenged me to run in the Marine Corps Marathon. As I was training, I kept thinking about my oldest son and the courage it took for him to enlist in the Marine Corps and to serve our country in Afghanistan, and the courage it takes for my son with autism to deal with life every day. I completed the Marine Corps Marathon in 5 hours and 29 minutes. I will turn 50 this June.
Q: That is wonderful. Your family must have been very proud of you! Your youngest son was diagnosed in the mid 90s. Can you tell us a little about your early experiences navigating the many many treatments for autism?
A: Back in the Stone Age when computers were not so commonplace, information on treatments for autism was sparse and not widely available. Most of the information I received was through other parents. I did not realize the breadth of the spectrum of autism. I thought most kids were alike and therefore what worked for one child would work for all children. My early experiences involved watching what other parents did and choosing treatments I could emulate. The New Jersey Center for Outreach and Services for the Autism Community (COSAC), now Autism New Jersey, provided a great parent training that focused on applied behavior analysis. Over the years, I have been able to incorporate what I learned at the parent training into a program for my son.
During this time, we tried the gluten/casein-free diet at home. We did not inform my son’s school that we were pursuing this diet and no change in behavior or ability was noted. It was very expensive, time consuming and stressful on our whole family. The testing was particularly hard on my son. Visits to the DAN practitioner, forcing him to take supplements and not allowing access to preferred foods was a nightmare. I justified the torture because I wanted to find a cure for my son. As is the case with many parents, I wanted to believe that there was a quick fix.
It is also important to note that 10 years ago ABA services were not readily available. Teachers with experience were few and far between. During the course of one year, my son had six different teachers. After a struggle with the school district that ended in mediation, my son was transferred to a private school. His first few months were a struggle, but after an initial adjustment period, he made significant gains in language and ability. Behavioral challenges finally started to decrease. At the age of 15, he returned to a self-contained class in our local public school.
Q: Your experiences are sadly not unique in that the lack of availability of evidence-based practices has certainly increased the attractiveness of other treatments. What do you think is different now for parents of newly-diagnosed children? What is easier and what is harder?
A: Information regarding autism treatment is much easier to find. Treatment summaries, found on ASAT’s website, provide parents and professionals with the most current information. Book reviews, article synopses, links to relevant sites and answers to frequently asked questions provide information that would have taken hours to research on my own. Colleges are offering course work that supports the field of autism which, in turn, has expanded the pool of professionals available to work with our children. Medical professionals are more proficient at diagnosing autism allowing children access to services at an earlier age. In many regards, there has been much improvement.
What I find harder is that many parents continue to struggle with school districts that drag their feet in providing appropriate services. As a parent of a young adult, I also find it hard to find services such as respite, employment and housing for adults with autism. Increased funding streams for research into the causes of autism have produced tremendous advances, but it is harder to find funding for programs for individuals currently in need of support. Finally, it is important to note that with abundance of information on the internet, is an abundance of bad information that can be incredibly distracting, particularly for parents of newly diagnosed children. I appreciate the role ASAT plays in helping parents with their ever so important decision making.
Q: Why have you remained so involved with ASAT?
A: Those famous words, “If only I knew then what I know now bear tremendous relevance to me. I want to help parents use science to help make decisions regarding treatment, not emotions, and ASAT is a wonderful forum through which I can do just that. When my son was younger, I had an overwhelming need to do something…I could not just stand by and watch the slow progression of skills that ABA produced. I realize now that clever marketing had a more powerful impact on the treatment decisions I made than common sense. I wasted a lot of time, money and energy on treatments that had no scientific basis.
Q:What are the various hats you have worn as a board member?
A: Over the years, I have served on almost all of ASAT’s committees such as Public Relations, Finance, and Website. More specifically, I have been involved in updating the Conference page, helping to redesign the website, monitoring the ASAT mailbox and coordinating and processing donations. I look forward to assuming the role of ASAT Treasurer later this year.
Q: What advice do you give parents of newly diagnosed children?
A: Take a very close look and then a second look at the treatments you are considering. When deciding on a treatment, take the time to research claims regarding outcomes. Are the claims based on data that support a change in behavior or ability? Is the claim based on belief that the treatment will produce a change? I can now read statements such as “based on a survey by users”, “thousands of people have stated” or “we asked hundreds of users” and question claims that are biased to sell products. Learn how to take data and make decisions based on what is working for your child.
That is all excellent advice. Thank you for taking the time to share your experiences. More importantly, thank you for all you do to help make ASAT a success!