Those of you drawn to this article are most likely familiar with autism and autism spectrum disorders. This article isn’t about definitions, diagnosis or research, but the challenges of managing all the treatment associated with autism. You probably have a close relationship with a child or adult who has been diagnosed with autism and are seeing firsthand the difficulties of coordinating their treatment. Children and adults with autism frequently have multiple agencies and treatment providers involved in their care. This article will primarily focus on children with autism, while understanding that many adults require coordinated care as well. The parents/family, regional center caseworker, schoolteacher and teacher’s aide, mental health clinic (psychiatrist and caseworker), speech therapist, primary care physician, respite workers, and additional behavioral, recreational or occupational therapists all have regular contact with children receiving treatment for autism.
Each of these providers has their own treatment goals and recommendations, and they are typically not in conflict, as each has their area of specialty. However, families have described difficulties when treatment providers either disagree with each other or fail to communicate about treatment. This dynamic becomes magnified if the child is experiencing a crisis or new behavior that requires amending the treatment approaches and goals. An in-home behavioral analyst may recommend a different approach than the child’s teacher, or a primary care physician might prescribe a different medication than the psychiatrist.
One family described this struggle after their 17-year-old son with autism witnessed the family dog being hit by a car. When he became upset, he would run out of the house, into the street, and continue to run until someone stopped him. This new behavior not only placed their son in danger of being hit by a car, but also, local law enforcement had to be involved to locate him. When discussing strategies for managing this behavior, the family received different recommendations from their treatment provider and struggled to determine which recommendation was “best.” It wasn’t until their regional center caseworker arranged a treatment team meeting for all the providers that the family was able to have the support and assistance they needed to manage their son’s running-away behavior. Although certain team members could not attend the meeting (psychiatrist, teacher and primary care physician), the members who did attend were able to come together with a plan for the son that addressed the dangerous behavior.
Managing autism and coordinating the needed care can be a daunting task. However, providers that specialize in autism are particularly dedicated to supporting families. They often will take extra steps to address each child’s and family’s individual needs. For more information, visit Autism Speaks at www.autismspeaks.org.
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