One of the most powerful position statements in the Autism Self Advocacy Network (ASAN), a national group run by persons on the spectrum regarding health care and the respectful use of therapies is as follows:
“Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology. However, ASAN opposes the use of behavioral programs that focus on normalization rather than teaching useful skills. One of the guiding principles underlying the United Nations Convention on the Rights of Persons with Disabilities is respect for the right of children with disabilities to preserve their identities. Autistic children should not have to grow up constantly being told that their natural behaviors are wrong and that they cannot be accepted as they are.” Click here to read more.
As a pediatric professional, I take this charge very seriously. It is important for a number of reasons, starting with the messages parents receive in the early intervention process (your child has differences vs. your child is deficient). What parents need to know is that there are treatment models available that value diversity and fundamental human relationships as the foundation to treatment. Relationship- based therapies are respectful of individual differences, and the emotional life of the child, parent, and caregivers. For professionals, this includes special training and reflective supervision about one’s impact on parents, and how sensitive information is communicated.
Currently, the reality is that the types of treatment children receive for autism is based on the services available in their community and school district and their parent’s exposure to information, or the family’s personal resources/ability to go outside what is publically available.
Fortunate families will have the benefit of therapists and teams who understand that autism treatment requires a deep respect for all individuals involved, an understanding of neurodiversity and the importance of not taking behaviors at face value. We need to move away from a pathology based model with therapies that focus on simple compliance/imitation to a fuller appreciation for the internal life of autistic children and the parents who love them.
For parents, I offer some suggestions:
1. Trust your intuitive knowledge of your child, regardless of the developmental challenge.
2. Make sure your child receives the customized services he/she needs, not just what is available.
3. Emphasize appropriate services for your child’s healthy social and emotional development, especially the messages and treatment s/he receives about naturally occurring adaptations (such as “stimming”).
4. You and your child can experience less pain and more joy on the special needs journey. Seek out professionals who can join with you to create the most supportive environment possible for your family.
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