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November 21, 2016
This blog post is part of a series entitled Real Lives, Real Stories: Personal Experiences With Mental Illness.
Note: The following person’s account of his/her personal experience has been published with his/her consent to support the mission of The Clay Center for Young Healthy Minds, and let others in similar situations not feel so alone.
Gene Beresin, M.D.
In 2016, Jamie Menhall, a 10th grader at BU Academy High School, had the unique opportunity to work over the summer as a volunteer at the Stepping Stones Center in Dubai. This program specializes in the care of children with autism spectrum disorder (ASD). His work included 40 hours of theoretical and clinical training in the concepts of applied behavioral analysis (ABA), as well as 24 hours of direct apprenticeship with trained therapists. He worked with a wide range of specialists, including ABA technicians, speech and language pathologists, and occupational therapists. Most of all, he had the opportunity to develop relationships with the children he cared for, and to gain a personal appreciation for their strengths, weaknesses, and challenges.
As you can see from his moving blog, Jamie came to this program with his own learning and attentional problems. A gifted and talented student, he learned to appreciate that these children were not entirely different from himself—something we all may fail to appreciate about youngsters who are emotionally or behaviorally challenged.
I have no doubt that this contribution to Real Lives, Real Stories will be an inspiration for us all, and that it will help us see others as unique individuals with the potential for growth and development.
My Experience Helping Children With Autism:
A Story Of Hope
The first time I met Michael, he bolted into a closet. Michael was 15 and, as a person with autism, scared of strangers. I was 13 at the time, and had signed up to work with people on the spectrum. Very slowly, Michael became more comfortable talking with me, and one day when I asked him his favorite food, he delightfully announced, “cupcakes.” This, I knew, was my way in with Michael, so each day I brought him exactly six mini chocolate chip cupcakes with rounded cream cheese vanilla frosting on top (at his request)—a cupcake protocol that had to be followed to a “T” in order for Michael to want them. In this way, I successfully used our common pleasure to build a stronger connection.
Autism is known to inhibit communication skills, as Michael’s story shows, but many misinterpret this lack of speech as a sign of a significant cognitive disability. While some children with autism do have lower intelligence, others do not. This is why it is referred to as autism spectrum disorder—the problems with communication, intelligence, and behavior are highly variable, as I discovered in my work. In fact, many persons with ASD will dramatically improve with proper therapy and treatment. Too often, however, it is believed that persons with ASD will never get far in life. And, sometimes meeting an autistic child in person only serves to reaffirm this stereotype. Some of Michael’s remarks, for example, could be perceived as insulting; but, I and others who knew him understood that he never intended to be offensive. He was simply trying to make thoughtful remarks—which, due to his inability to perceive social cues, made it difficult for him to carry on a conversation. Through my experiences with Michael and others like him, I have come to believe that autistic children are hardly permanently disabled. Rather, they are just missing a few neurological pathways and behavioral skills common to most other people. Furthermore, I’ve come to understand that they are capable of making new neural connections and learning new functional skills. I’ve also seen how they take great pride in their growing accomplishments!
I soon met another child with autism, John, who had difficulty with verbal communication. It was my first day in the office for my internship. I was walking briskly down the hallway to the kitchen to fetch my third cup of hot, sugar-filled coffee. There, in a doorway, I saw a boy who was no more than 5 years old. He had black curly hair and big green eyes that seemed to take in everything around him at once. He looked like an ordinary boy bedecked in a red shirt, khaki shorts, and a pair of green Crocs plastered in stickers. His therapist, holding him gently by the hand, encouraged him to wave and say, “Hi.” And so he looked at me, and with a spark of confidence, waved timidly. With additional prompting, he was eventually able to squeak out the word “Hi” before bolting into the classroom, eager to escape the interaction. I later learned that John had been non-verbal until the previous month, and that his “Hi” represented tremendous progress.
As I continued to work with people on the autism spectrum like Michael and John, I continued to witness their progress. On the final day of my internship, after I had completed countless hours of online training, I was sitting in on a session of a young boy practicing a new skill. I remember his vibrant green tee-shirt and short black hair. On his face he wore an expression of frustration—the kind that only comes from intense determination. For weeks we had been working on the motion of scooping some rice into a spoon, carrying the spoon across the table, and dumping the rice into a container without dropping a single grain. On this hot, sunny Sunday, the boy executed this skill successfully. His eyes grew big as they lit up with joy, and a gleaming smile spread across his face.
I myself have some learning issues, including mild attention deficit hyperactivity disorder (ADHD), dyslexia, and processing speed deficits. These were not formally diagnosed until recently, but I recall moments from my childhood when they were apparent. When I was 6 years old, for instance, I deeply struggled with subtraction. My parents even bought me a Subtraction Guide for Kids! book. I remember sitting for hours attempting to solve simple subtraction problems—only to discover, to my dismay, that I had no concept of bringing over the “1.” I’d often grow frustrated and want to take it out on the book. A few times I even threw it across the room in anger. Similarly, children with autism often take out their anger and frustration through screaming and throwing temper tantrums—which, unfortunately, reinforce their dysfunctional stereotypes.
Because of my own difficulties with learning and my experiences working with children with autism, I was empathetic to the struggles these children and their families dealt with every day. In time, I developed my own sense of what it means to have autism: someone with autism lacks certain connections and pathways that are natural to a neurotypical mind. For example, understanding that a basketball is a ball that is larger than a baseball, or recognizing that they are both balls, yet different kinds of balls, may be difficult for those with autism. Lacking these pathways is not the same as lacking intelligence, and, fortunately, extensive practice can help those with autism develop these pathways. Behavioral therapies are critical because they provide autistic children with a far better chance of leading a fulfilling life—whether it’s having a job, or starting a family.
I learned that there is a range of difficulties in children with autism, and this is why it’s referred to as autism spectrum. While some may, in fact, have diminished intellectual capacities, others are quite bright, having deficiencies in communication, coordination, regulating emotions, understanding the intentions of others, or simply appreciating what social behaviors are appropriate for specific situations. It can certainly be complex, but the therapists I worked with understood the particular problems of each child, and created a customized learning plan for each individual. This was not all that different from my own special learning plan for my learning challenges.
My experiences working with children on the autism spectrum come at a time when rates are rising dramatically. As of 2014, ASD is diagnosed in approximately 1 in 68 children, a 30% increase from 2012, when it was 1 in 88 (per the CDC). This compares to about 1 in 200 in the year 2000. Scientists predict that by the year 2030, 1 in every 15 children will be autistic: approximately 1 in 10 boys, and 1 in 21 girls. Recently, there has been speculation about the causes of ASD and why its occurrence is growing at such an astounding rate. Some theories posit that chemicals in food, commonplace drugs, and other environmental influences may have led to these increased rates. My experiences working with people on the spectrum has led me to believe that we, as a society, need to develop a deeper understanding of autism, as well as empathize better with those living with the disorder. After all, we need to learn to accept differences in all people, helping others without judgment or uninformed bias. Given the rising rates of ASD, I also believe it’s crucial that we devote ourselves to finding the cause(s) and, in turn, a cure. Better yet, we may find what it takes to prevent ASD in the first place.
N.B.: All names have been changed.