Moving for autism care

Published by: Spectrum
Written by: Marta Zaraska

After their son Jett was diagnosed with autism, Sarah Harris and James Shilling found the local care wanting in West Virginia, where they live. They faced long waitlists for the standard autism therapy, applied behavior analysis (ABA), and local schools were either too expensive or lacked programs appropriate for their son. Harris and Shilling envied the options they found in the neighboring state of Ohio, such as ABA-centered curricula designed for children with learning and sensory differences. “I got really frustrated that we couldn’t do something like that,” Harris says. They wanted to move — but felt they could not afford to do so. Shilling’s unionized job as a truck driver was not easily transferable, and the family feared losing their health insurance.

David and Michelle Lane, who live in Kentucky, were also eyeing better care across state lines. When their son Aaron, who has autism, became aggressive as a pre-teenager, nothing they tried seemed to help. Appropriate therapy and schooling seemed elusive where they lived, Michelle recalls. So by the time Aaron was 17, the family felt they had exhausted all local options, and they decided to move. “We looked all over the whole country,” David says. In the end, they decided on Boston, Massachusetts, after friends with a daughter on the spectrum raved about the great schools there.

No one knows exactly how many families move, or want to move, for better autism services in the United States, but some evidence suggests that the desire to do so is common. Unpublished findings from a 2004 survey of 969 caregivers of people with autism suggest that about 1 in 5 moved to get higher quality services, according to David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania in Philadelphia. Local U.S. autism organizations, including the Autism Society of Colorado and AutismUp in Rochester, New York, say that just about every week they hear from a family wanting to move to another state in search of superior care. And autism forums on sites such as BabyCenter, Facebook and Reddit are rife with questions from parents about autism-friendly states. Click here to read the rest of the story.