THE PILGRIMS: THE JOURNEY TO A NEW WORLD FOR AUTISM

Andrew, Ontario Canada:  Long before age 1, Andrew’s parents thought something was unusual about their baby boy. At age 18 months, his ability to speak vanished.  He became transfixed on things that spin, terrified of faces and socially and emotionally distant.  Andrew was diagnosed with autism at 2.  Access to intervention was sporadic and then absent as Andrew languished on waiting lists for treatment like the vast majority of children with autism in Canada.  Andrew’s parents Jeff and Jackie hired private therapists and took the role of full time autism workers,  becoming trained in autism therapies like ABA and Floortime.  They also took up the task of advocating for the rights of Andrew and all children with autism who must access early intervention to have a chance at success. At the age of 4 after intensive intervention, words returned to Andrew. Today at age 10, the bright and verbal Andrew is pumped to be joining the walk on the Camino, and he plays a big part in his parents’ ongoing work for autism reform. 

Harrison, California:  Harrison was born in 1999 and developed typically until about 18 months, when a caregiver expressed her concern for his deepening slide into isolation.  Harrison’s parents took him to the center for children at Stanford University Hospital and received a diagnosis of autism that ended the dream they had of watching their once normal, healthy baby grow up whole.  Harrison faces developmental challenges that center in the trademark inability to form social connections or to speak conversantly, physical repetitive movement and sensory deficit behavior.  Harrison’s mother Kim is a poet who teaches writing to college students.  She has journeyed into some of the biomedical interventions for autism and has relied largely on her local public school district to give Harrison education and therapy.  Being intimately acquainted with the challenges facing families who receive this diagnosis and the blockades in place to keep kids from getting treatment, Kim has a passion to change the future for children with autism all over the world.

Lila, California:  Lila was born in 2002 and developed perfectly until the age of 18-20 months.  Amanda, her mother, recognized the bizarre backsliding in Lila’s development which grew incrementally more serious until Lila’s first preschool teachers suggested getting a diagnosis.  From the day of that diagnosis on October 21, 2004, this family has undertaken everything from raffle ticket drives, to a concert offered by Jack Black and Kyle Gass (Tenacious D)  to raise the funds to provide Lila with medical intervention excluded by insurance, and legal support to defend Lila’s treatment from state government agencies internally mandated to stop autistic children from getting vitally needed early intervention and progressive education.  Many other families in the U.S. sell their homes and mortgage their livelihoods in order to overcome the obstacles to intervention.  After more than three years of intensive therapeutic and medical intervention for 45 hours a week, Lila speaks conversationally just below appropriate age level, is mainstreamed in a neuro-typical classroom with an aide and shows appropriate affection for familiar adults. Her social and sensory challenges remain, but are treatable.  This level of intervention was obtained despite the preponderance of medical and state agency pundits saying she couldn’t see significant improvement.  This resistance is the story of families and their children in the grip of autism throughout the world.

Autism is an urgent civil rights story.