A person may have Autism, but Autism does not define them. Too often all the traits that a person has, every behavior they exhibit is attributed to the person having Autism. It is like the person loses his/her personhood and becomes an “Autism”..We each have many traits but they never define us.
This is one of the messages that Eve E. Megargel communicates in her book entitled “Learning To Kiss”. In the book she shares the life story of Billy, her son with Autism, and the impact of complicated and difficult to determine medical issues he has, the manifestations of which were too long attributed to his having Autism. Woven into the story is the growth of Billy’s abilities to be a communicator, from learning to form the physical act of a kiss as a way to develop connection, to becoming a competent communicator with a speech output device. Billy’s ability to develop his communication skills was dismissed as something he was not capable of. Fortunately, his family did not agree with that thinking, as his ability to communicate became crucial as they worked with his serious health issues.
My husband and I heard Eve speak at a presentation of the details of the family journey written about in the book. As our son had gone through several years of pain issues due to health issues and difficulties in communicating effectively about them, we related all too well to the Magargel family’s experiences. It was an emotional rollercoaster seeing a son in pain and struggling to understand what was wrong. There is a profound grief in knowing that your loved one is not well and in pain and struggling to find answers from doctors. Thankfully, we found some doctors who were willing see our son’s behavior as communication of pain and struggled with us to find the physical issues causing the pain. Others with Autism are not so fortunate.
Early on, when an educator’s stated goal for Billy’s education was to learn to comply, Eve advocated for Billy’s right to have his education address his need to learn to communicate in more effective ways, and to be appreciated as a person rather than being defined by his Autism. She persevered in her quest to make sure that her son was not underestimated because he could not talk and struggled in a world that was often confusing and at times overwhelming.
People with Autism just like all of us, need to have opportunities to develop their skills and talent. We all want to have people take the time to understand our communication and be responsive to our feelings and needs. We all thrive through meaningful relationships with people who value us. It takes letting go of our fixed concepts and ideas of who a person with Autism is, and what they need and being open to learn what is meaningful to them. Communication is so much more than spoken words. How we regard a person with Autism is communicated to them not solely by our words, but by how we relate to them. Eve writes about individuals in her son’s life who took the time to really see and know her son. Billy blossomed in relationship with them. Throughout my son’s life I have seen how my son has blossomed in relationship to people who are able to reach out to him in ways to which he can respond and who value him. The dance of these relationships is a joy to behold. These people will tell you they get as much as they give. Each is enriched by the relationship.
May we all have people in our lives that are there through the good, the bad, and the ugly. People who see us as we are, not as who they think we are or want us to be.