Autism from the inside

By Elizabeth McBreen

Dr. Barbara Firestone calls it her "a-ha" moment. She was a college freshman enrolled in a mandatory Speech Communications class at Douglass College at Rutgers University. Firestone’s professor took the students on a field trip to a state institution without telling them why they were going. When they arrived, each of the students was assigned to a patient at the institution. The students would spend an hour with the patient. "I was assigned to a boy named Timmy, an adorable little boy," says Firestone. "He made no eye contact, he had no communicative skills, he rocked back and forth." Firestone knew that the children she met that day would be severely challenged, but she did not know what was keeping Timmy from making contact with her.

For the better part of an hour, Firestone put her youthful energy to work. She tried everything she could to engage Timmy – "I sang, made funny noises, jumped up and down." Nothing worked. "‘He must be so isolated,’ I thought...I wondered, ‘What must his world be like? How does his family cope?’"† Disheartened by not being able to make contact with Timmy, Firestone spoke to a staff member who told her that the boy had a condition called autism. Firestone had never heard of autism before that day, but it was about to change her life.

On the way back to campus, Firestone’s speech professor told the students that she had brought them on the field trip to show them the importance of communication. Firestone asked her professor what someone should study to help children like the ones they had visited. The professor told Firestone that with a degree in speech pathology, she could help children develop their communicative skills. "I asked if Douglass College offered a major in speech pathology and she said yes," says Firestone. "I knew immediately what I would do with my life."

After Firestone completed her speech pathology degree at Douglass College, she pursued a Master’s Degree in Communicative Disorders at Montclair State University and enrolled in the doctoral program at New York University. She completed her doctoral studies at the University of Southern California, taught at the school as an adjunct professor for three years. and then worked as Executive Director for a small speech and hearing center in Los Angeles. Firestone saw such a large need for speech services that she decided to open a school. Instead of one or two hour sessions once a week, she thought a full-time school dedicated to the needs of these children was needed.

It was 1975 when Firestone contacted the California State Department of Education about her idea for a special education school. The Individuals with Disabilities Education Act (IDEA) had just been passed, paving the way for Firestone’s venture. Opening its doors to the first class of four children in October of 1975, the grass roots venture has been thriving ever since. Beginning as a nonprofit special education day school, Firestone’s school has grown into The Help Group, a family of agencies serving children with spectrum disorders, learning disabilities, attention deficit hyperactivity disorder, mental retardation and emotional and behavioral disabilities.† "It met a tremendous need," says Firestone about the school’s first years. "There were children with all kinds of disorders, autism, Asperger’s, some were aphasic, but they all had severe communicative disorders." The Help Group now has four campuses, serving 1300 children with autism spectrum disorders and learning disabilities. Firestone says that over the years, there has always been a "core of autism" at The Help Group schools.

The Help Group maintains a collaborative relationship with the school districts in California while offering integrated programs. "We involve parents, offer speech and occupational therapy. But the same thing does not work for all children. There’s no panacea; there’s no one approach that will meet the needs of all children," says Firestone. "We believe that programs truly have to be individually tailored, and the outcome is significant for most children." Firestone says that in general, a child will progress after just three to six months in one of The Help Group schools. As the agencies under The Help Group have grown, Firestone has kept her finger on the pulse of the autism community. The staff of the school take part in continuous professional development, they lobby for legislation on state and national levels and conduct outreach programs in the community.

It is her decades of experience with families touched by autism and other spectrum disorders that spurred Firestone to write her book, Autism Heroes: Portraits of Families Meeting the Challenge. One of her goals for writing the book was to share the "benefits of knowledge" with more parents and "accelerate the process of diagnosis." Firestone says that the average age at which a child is diagnosed with autism is four years old. Children can be even older in inner cities. "We know now that a child can be diagnosed by an experienced physician as early as 18-24 months. Parents can be prone to denial, and wait when the doctors say ‘let’s wait.’ I want parents to have a life-line, to know that things are getting better. I want them to know this is not a dead-end."

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