By MARYMICHELLE LOTANO
When my son was born, it did not occur to me that there might be bumps along the way. He was small and cute and rarely slept, but that was all quite ordinary. It wasn’t until preschool that others began to notice differences between him and his peers. His speech was not as intelligible to others as it was to me. He liked to run in circles and flap his hands. And, as the preschool teacher explained to me, “He can’t pinch.” Good, I thought … or maybe not.
People suggested I have him evaluated. It was time to ascertain what all these idiosyncrasies might add up to. While no one initially came out and said what they thought the issue was, I knew what they were thinking. They believed he exhibited some autistic like tendencies. And while I did not necessarily believe he was autistic, I didn’t know precisely what he was struggling with. So, I allowed him to be fully tested, not knowing what would happen once his issues were identified.
The identification process required his speech to be evaluated, his occupational therapy development to be assessed, and his behavioural and cognitive issues to be explored. After all the evaluations, they came to me and informed me he exhibited autistic like tendencies and was eligible for special education services. I said yes. Although his father fought me, the services began.
The early intervention changed all of us. I became quite learned in the laws that protect and educate our special needs children. My son began to speak more clearly, write with greater ease and handle his emotional misunderstandings of social situations with more thought. His father remained in the background.
As my son and I journeyed along this path, his diagnosis changed. By second grade, he was found to have less autistic like tendencies and more of a learning disability. By the fifth grade, the learning issues became predominant. The autism issues faded into the background. The more pressing concern was how to properly teach him.
The team of people within the public school system who worked with my child were every bit his angels.
There was Nadine and Summer, who were generous with their resource room and found a myriad of ways to assist him with his emotional challenges. There was Cherie, who took him aside during testing and verbally spoke the test with him to be sure his true intelligence was ascertained. There was Megan, Anna and Jessica, who spent hours on the floor articulating language at his level. And there was Melissa, who was relentless in making sure his magnificent imagination could be written down for all to read and enjoy.
My son is now rocking through the eighth grade. He has informed me that he does not have one of those Independent Education Plans. While I beg to differ, he believes this because of the efforts of all those who shepherded him along with such care and attention.
My son is not the only one in our family to have suffered from the social and communicative confines of autism. When I met my son’s father, I was exposed to some unusual emotional behaviours, although I wasn’t sure what they meant. I knew the behaviours were different and awkward, but I thought it was an ordinary form of social discomfort. Over the years, I realized the issues were more significant than a tendency toward shyness. Through counselling, observation and education, I discovered that he appeared to be one of the many unidentified, high functioning autism spectrum adults.
The challenge I faced in our marriage was tremendous. But I am an adult, so I had the capacity to grow my intellectual understanding of his behaviours and the ability to use my emotional intelligence to understand his challenges. As I traveled the route of early intervention with my son, I came to see how the adults in our communities whose autism is high functioning and unidentified have suffered needlessly throughout their lives. While I wish this had been enough for us to thrive in our marriage, it was not.
As my son experiences similar situations in the world, explanations have been necessary and difficult to craft. We began by talking about the types of intelligence available to us as human beings. The first type of intelligence is intellect. My son understands this to mean everyone’s ability to think and work in the world, and to comprehend math and science, reading and writing. The second type of intelligence is emotional. We decided to call this being heart smart. I explained to my son that being heart smart means understanding our own emotions, understanding other people’s emotions and understanding how our behaviour affects those around us. Being heart smart can be difficult for some.
We are not the only family to have faced these unidentified challenges without success, but speaking out about this is rare because we appear to be just another statistic for family challenges and marital failure.
Therefore, many of us do not know anyone else like ourselves. There are no support groups for those who unknowingly entered into an experience with these characteristics. We also have no guidance for how to handle the dynamics such a situation can create. We are left to fend for ourselves. It is time for families struggling with adult autism to make themselves known in the world, to ask for help.
And while many do not, maybe if I speak up, someone else might too.
Author of Circles of the Soul, Marymichelle Lotano has explored the areas of personal growth, meditation and art. Ms. Lotano is currently a full time writer and mother, residing in Carlsbad, California. Visit: circlesofthesoul.net.