Essay. Autism Awareness Day 2016

On my 21st birthday, I began medical school. We debated with Joseph until the weekend before his birthday whether he wanted a cake with Pokemon or Paw Patrol. He chose Paw Patrol, a cartoon show for pre-school children about a town where the Dalmatian is the fireman and the German shepherd is the policeman.

Our first child seemed healthy, but Joseph’s language had not developed by his second birthday. He didn’t make eye contact. There were lots of tantrums where we had no clue, except that he wanted something we were not giving or doing.

Two early-childhood specialists came to our home to observe Joseph when he was about two and a half. They watched, then turned and used terms that I knew carried a meaning I would hate but I did not yet know. They said Joseph had almost no language skills. He made no eye contact, never brought a toy for me or for one of them to see, and did not demonstrate “symbolic play.”

Between the observation and the meeting for results, I visited the psychiatrist I saw for depression. Since he had followed Joseph since he was a pregnancy test, he felt he knew Joseph fairly well.

I told him what buzzwords they had used. I began to say I understood how people felt when I used medical terms when suddenly I saw, really saw, his face. He was shocked. Finally, he slowly said Joseph apparently had autism.

Joseph visited a pediatrician, two neurologists, and then a psychiatrist. He had 6 diagnoses when he turned 3, including autism, language delay, major mood disorder (later, bipolar disorder), and obsessive-compulsive disorder. He had seizures. I felt particularly guilty when I saw his first seizure because I had developed epilepsy after my career-ending head injury.

Later, Joseph met 8 diagnoses. We were told not to think of a number, but to realize there were global brain abnormalities. My husband and I had brains that were almost high definition, but my son’s produced grades of static.
We have one child, but we have a child who smiles often (missing a tooth from one of his many falls) and says please and thank you, shouting in restaurants so the staff and every patron who isn’t deaf can hear him. He loves people. He has no concept of personal space, and, as he is tall and broad shouldered, he makes some people feel threatened, but he is a friendly giant.

He reads avidly and is far better with touch screen technology than I am. Joseph has some problems similar to those of cerebral palsy. He cannot use his fingers individually, so he tends to scoop things. At school, he has a one-to-one when awake for his safety and that of people around him. He feels he has a constitutional right to company. He has visited me in the bathroom to remind me.

When he was about 10, we knew he would not “catch up.” When he was 13 we looked for a residential program because he needed intensive therapy and we could no longer do the care needed in the bathroom, in dressing, in eating.

Joseph has wriggled his way into many hearts, a favorite of the restaurant staff he sees on weekends. They all know his name, and last night two people vied to wait on us just so they could see his enthusiasm for the new toy in the children’s meal bag.

I do not want to look at my child and see autism or any other disorder, let alone the many challenges he faces now. I want to see a young man, the result of the love my first and last boyfriend and I had for one another, our genes, our parenting, and the hard work of many dedicated professionals. I want to see Joseph as the absolutely unique person that God and 21 years have given us.

I want to see Joseph the way he sees himself and us.

Elizabeth Coolidge-Stolz, MD/ (c)

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