VIEWPOINT: DIAGNOSIS: AUTISM A Family's Journey to Obtain Effective Treatment
- Marissa Bennett
“It’s very apparent to us that this is autism.” The developmental pediatrician’s words hit me like a nuclear bomb as I sat in the examination room cradling my 19-month-old son. I wanted to run far away with my son in a futile attempt to protect us from everyone, and from the autism that loomed ahead of us like a dark storm cloud.
After performing a battery of diagnostic procedures, the professionals who made the diagnosis recommended that we immediately place Justin in their therapeutic nursery program. The program treated children with various disabilities and, at the time, we didn’t realize that there were any other options available to us. We were assured by the professionals that this was the appropriate placement for our son.
In the months that followed, we faced frustrating obstacles and heartbreaking decisions. The process of securing an accurate second opinion was fraught with misdiagnoses by several professionals of varying disciplines. We discovered it was necessary for us to become “immediate experts” in the field of autism, since the professionals to whom we turned for information lacked even a rudimentary knowledge of autism and its treatment options. We then had to address the challenge of securing appropriate and beneficial treatment for a condition we knew nothing about and received no treatment guidance for; all the while, we as parents were enduring the agony of grieving the loss of our “normal” child before he was barely a child. We felt that we were racing the clock, as every day our beautiful little boy slipped further away from us, and from the typical development he had displayed just a few short months before.
Justin floundered in his nursery program. The program was staffed by a very attentive special education teacher and two aides assigned to eight children. Speech and occupational therapies were also provided. However, my son preferred isolation and engaging in bizarre behaviors over group activities like circle time, singing songs and doing arts and crafts. Justin’s discomfort with the school environment and being separated from me would cause hours of crying. As the other children began to make progress, it seemed that my son had not benefited from intervention at all. I remember thinking that I wished Justin needed such little help as was available in his nursery program. It was very apparent that Justin needed “something else” that was “more intensive,” but I had no idea what that something else was.
We continued researching autism and treatments. We reviewed every autism program in our area and, later, the country. Unfortunately, the process became even more complicated: every question we asked was answered differently by different people, which led us down more paths to be explored. I felt the injustice of not only having to deal with the diagnosis of autism, but also that we needed to become detectives as well. There were no professionals or organizations to guide us. We were told things like, “You’re the expert when it comes to your child. You will know best as to what type of intervention you feel is right for him and your family.” I was aghast that the investigation and direction of treatment was being placed so squarely on our shoulders. Surely we were not the first family to deal with autism. I wondered: if our child had a terminal illness, would the recommendations for course of treatment be so subjective and elusive, or would professionals prescribe treatment proven to be effective? We were desperately looking for experts to guide us. This child was our world, and we were willing to move heaven and earth to help him, but no one could show us the way.
The literature I found was grim. Little was known about autism as a disorder, except for the symptoms individuals displayed. Outdated books and articles yielded even less in the way of treatment breakthroughs; outcomes were expected to be institutionalization, and crippling, lifelong impairments. In an effort to help evaluate early intervention programs, I began to ask for statistics on how many children with the diagnosis of autism had been successfully mainstreamed into public schools. I was told no such data were compiled. How were we to judge a program’s effectiveness in treating our son’s disability if we had nothing more than the assurance that the program was the appropriate placement? Even more serious, how were providers able to judge their own program’s effectiveness, and where was any measure of accountability?
Eventually, I came across an article about a center-based program for children with autism that utilized the principles of applied behavior analysis (ABA). The article went on to quote the program’s statistics of successful transitions for some of the children to less restrictive environments. At last we felt that we had stumbled onto a promising path.
I gradually began to learn that ABA as a science had been used to teach and treat children with autism for the last 30 years with some very promising, documented results. I also discovered that while the science of ABA does not involve invasive procedures like surgery, it requires as much academic and clinical preparation of practitioners as any specialty in the medical field. I didn’t fully understand the science of ABA at the time, but realized it was the only treatment that could offer us scientifically valid outcome data and, because of that, we needed to pursue it for our child.
By utilizing ABA, first privately and eventually in a center-based program, Justin finally began to flourish. As we became more educated about ABA, it made complete sense to us that Justin was able to make such immediate and significant progress. His program was individualized to define goals designed to address his specific deficits, and to build new skills. Each goal was broken down into incremental, measurable steps. As each increment was mastered and then combined, it enabled him to master the “building blocks” for each goal. By using daily data to chart his performance, accurate decisions could be made regarding the direction of his programs. ABA was an incredibly effective way to teach Justin everything in his life, literally, aside from breathing.
Because nothing came “naturally” for Justin and he did not learn by watching others, every skill needed to be taught to him. Since he seemed to lack language comprehension (both verbal and non-verbal), Justin was unable to follow spoken directions. This also meant that before using ABA, we had no accurate way to measure how much of the world Justin was able to comprehend. By utilizing ABA programs, however, my son was able to master goals like imitating others and following directions. He also achieved a marked increase in both his receptive and expressive language. He was taught to utter sounds, then blends, then words, and finally sentences. This was done in conjunction with learning to comprehend what he is saying, as well as what is being said to him. In addition to academic goals like reading, writing and mathematics, Justin also needed to be taught basic self-help skills like using the bathroom, brushing his teeth, going to sleep at night, remaining asleep until morning, bathing and dressing. As a parent, perhaps the most difficult thing for me to accept was that my son had to learn how to tolerate interaction with people, and to receive and reciprocate affection and love.
By using ABA as a teaching and treatment method, Justin continues to broaden his life and that of our family in very constructive ways. Thanks to ABA, he is able to tolerate getting his hair cut, and going to the doctor and dentist. He is learning to swim, and now enjoys outings to the movies, mall and the homes of family and friends. My son has learned how to learn.
Justin is now 9 years old and, unfortunately, remains a child acutely impaired by autism. He is a verbal child, able to express his basic wants and needs, yet he is not what one would consider conversational. My son cannot tell me about his day, or if he feels ill. We can’t talk about his fears or share our hopes and dreams, but we do share an incredible love for each other and, despite autism, are able to enjoy a beautiful relationship. My son’s autism has not been cured, but he continues to make significant progress. He has benefited immensely from the course of intervention we have chosen for him. While our life is by no means easy or typical, we are not devastated by the obstacles that come our way. We know we can develop a strategy to assess the situation, and to teach Justin whatever skills are necessary to address and overcome the problem. We feel Justin’s best chance of maximizing his potential will come from letting science lead us. By choosing science for Justin, we now have the security of knowing that we are doing everything we can to help him become the best that he can possibly be.
As a mother who loves her child absolutely, and wishes only the best for him, I support credible research into the possible biological causes and cures of autism. However, I also need to know that I am enabling my child, through effective, science-based treatment, to reach his fullest potential now, under our present system of knowledge. That is my peace of mind.
This article originally appeared in an issue of “Science in Autism Treatment”, the newsletter of the Association for Science in Autism Treatment (ASAT). It may not be republished or reprinted without advance permission from ASAT. For reprint permission please contact firstname.lastname@example.org