On Monday, March 25, I was part of “Voices in the Family” a public radio show with host Dan Gottlieb. Eustacia Cutler also lent her voice to the discussion. Eustacia is the mother of Temple Grandin, a well-known adult with autism, an author and speaker. Dan has been living with quadriplegia for 33 years, and I have a 33 year old adult son with autism. We had a wide-ranging and soul searching conversation discussing the worries and the heartaches as well as the extraordinary lessons that children with autism teach us about acceptance and about what it means to be family. The podcast of that discussion is now available through the WHYY website.
What does it mean to be aware of and to accept autism? Last March 1 in 88 children in the U. S. were diagnosed with autism. Just last week the federal government again revised the prevalence of autism upward, saying the developmental disorder now affects 1 in 50 children. All of these children and their families are profoundly affected—their parents, their brothers and sisters, their grandparents, their friends, and the larger community. How do we deal with awareness or acceptance of an issue that may not change or only changes slowly?
While the interventions for autism understandably focus on the symptoms, services tend to ignore the big picture of the family which includes parents and siblings, and the family’s overall health. Each child with autism lives with a family, and that family lives with each child. While the symptoms change and often lessen over time, they don't go away, so families must learn to live with these problems long term.
Eustacia Cutler, the author of A Thorn in My Pocket, talked about what it was like to raise her daughter in the 50s when autism was not part of the national conversation. She explained how she was thrown off by the lack of connection between herself and her daughter. In her words, "I forgot who I thought I was when I finally faced it. A baby needs a mother in order to know that she is a baby, and a mother needs a baby to know she's a mother.” The loss of connection impacts the entire family—not just the child with autism. We must go on, but how?
What does it mean to accept autism, or any incurable condition for that matter? How do you avoid getting stuck in it? For starters acceptance does not mean giving up. It does not mean resignation. It does not mean liking the situation you're in. Acceptance does mean the responsibility to do our best, facing each day with courage, and changing what is changeable. We can rebuild and nourish the bonds within our families noticing what is right and what is working at any given moment. It means getting together whether on the floor or at the table and enjoying each other's company and interactions.
Ultimately acceptance is not about making peace or war with autism. Sometimes we may be at peace, and in the blink of an eye we may feel at war with a situation or problem. Learning to look into and face your specific circumstances will help calm any storm of thoughts, emotions, and sensations. Then we can see our options, and make a reasonable choice. Thus acceptance involves holding everything about our lives gently with balance and a measure of serenity. The love we give to a family member with autism and the love we get back can indeed ground us to the earth and all humanity.
At the end of the show, Dan Gottlieb spoke about “Zorba the Greek” who used the phrase “full catastrophe” to describe the wide spectrum of life—all the joys, sorrows, tragedies, and possibilities that open as we live. This complexity and fullness doesn’t take years to experience. When we learn to pay attention to what is going on, awareness of autism and its impact on us and our family can occur in days, hours, or even minutes. We can be angry, relieved, sad, hopeful, ashamed, scared, and peaceful before we even manage to get dressed and have breakfast in the morning.
What I've learned and what I see families learning on their way to awareness and even acceptance is to respect the diversity of viewpoints they may hold. We may each have a unique point of view, and healthy families learn to honor each member individually. Awareness includes the understanding that everyone is not seeing and feeling the same thing at the same time. Our perspectives are different, but they do not have to be the root of conflict and struggle; they can form the strong base of acceptance and family bonds.
Tense uncomfortable feelings among family members often come from longing for things to be different from how they actually are and sometimes even blaming each other for that reality. Most likely we are all doing our best under trying circumstances. Giving everyone the benefit of that doubt, including the family member with autism, that's acceptance in the family.