Malcolm El / © Maiken Scott
A Day in the Life: Malcolm El
Growing up autistic in the United StatesIt’s a little after 8 o’clock on a cold Philadelphia morning, and four-year-old Malcolm El has just finished his first temper tantrum. It started because he wasn’t happy with breakfast and ended with Malcolm hiding under the couch. “He screams ‘I’m upset. I’m sad!’” says his mother Kamil, “and then we have to coax him to come back to the table and wipe his tears.” Kamil says the tantrums are a daily routine, and they are especially stressful when they have an appointment to get to. “And we always have an appointment to get to.”
Malcolm has “Pervasive Developmental Disorder not otherwise specified,” a somewhat vague diagnosis that makes up a large portion of the Autism Spectrum disorders. He is friendly and affectionate with a sweet smile, but has difficulty with language and controlling his temper. Malcolm’s mood improves in his mother’s van as they set out from their middle class neighborhood to a therapy appointment an hour’s drive away.
Malcolm was an early talker and walker. A family video shows him at age one running along a beach, smiling. “He was saying, ‘I love you, Kamil,’” remembers his mother. Looking at these images a few months after the vacation, El realized that her son had slowed down. Malcolm had essentially stopped talking, and he wasn’t smiling or making eye contact as much. Instead, he was constantly running away and throwing explosive temper tantrums. About one in 150 American children are diagnosed with autism, and for many of them, symptoms only begin to appear between the ages of one and two.
Concerned, Kamil and her husband, Daniel, took their son to Philadelphia’s ChildLink, a city-funded agency that connects families with special needs children to services. Therapists there decided that Malcolm was indeed delayed in his development and eligible for services. A special instructor, a speech therapist and an occupational therapist came to his pre-school to work with him.
Malcolm was lucky. He was diagnosed early, and started interventions right away.
David Mandell of the Center for Autism Research at the Children’s Hospital of Philadelphia says many children are not diagnosed until they are about six years old, which means they are not getting therapy during a crucial time in their development.
But after enrolling Malcolm in a school for children with special needs when he turned three, Kamil and Daniel felt that his condition wasn’t improving and inquired about additional therapy options. Kamil says she was met with resistance by her early intervention caseworker. As is often the case for families affected by autism, it was other parents who guided Kamil towards more help for Malcolm. After a lecture on autism, she met a mother who shared valuable resources. “She said these are the things you need to fight for, here are some Web sites you need to check, and do all of this like, yesterday,” remembers El.
School services for children with autism are mandated federally by the Individuals with Disabilities Education Act, and new Pennsylvania legislation requires larger insurance plans to pay for diagnosis and therapy. Still, many parents report that getting appropriate school services and therapy interventions is an ongoing struggle. In addition, many autism treatment centers have year-long waiting lists.
The Els hired a lawyer to support them and demanded that Malcolm get access to Applied Behavior Analysis (ABA) therapy. Based in part on B.F. Skinner’s work on positive reinforcements, ABA therapy has shown some promise in treating autism spectrum disorders. In several large studies, about half of the children show major improvements in language, behavior and school performance when receiving early, intensive ABA therapy. Malcolm’s sessions are paid for by Daniel’s insurance, but it took Kamil more than 20 phone calls to find a place that would accept Malcolm and had no waiting list.
At about 9 in the morning, Malcolm and Kamil hurry into Potential Inc. in Newtown, Pennsylvania, for his ABA therapy session. He started the sessions—four a week for one to two hours at a time—in January, and only eight weeks later his mother says she already sees improvements in his behavior, language and ability to control his temper.
Since starting ABA therapy, Malcolm responds to questions, rather than endlessly repeating what others say to him, his verbal skills are improving, and he throws fewer temper tantrums. Still, Kamil says, having a child on the spectrum is exhausting. “It’s more than a full time job. I am his parent, cheerleader, supporter, friend, disciplinarian, therapist, chauffeur,” she sighs. “I have to prepare his meals, and still be aware of all of his behaviors, and do the same for his sister, and work full time, and run a household.”
Kamil says she is happy with the progress Malcolm is making at the moment, but her biggest hope is that he can be in a regular classroom by the time he reaches kindergarten. No matter how exhausting, she says that she and her husband will continue to dedicate themselves to helping Malcolm overcome or manage his disorder. “Anything for Malcolm,” Daniel says.
Author Bio:
Maiken Scott is a radio and television reporter for WHYY in Philadelphia. She covers behavioral health and has reported extensively on autism.
Photo: Malcolm El / © Maiken Scott
