An Expedition through Autism

Autism Spectrum Disorder was not a term I was familiar with five years ago. In all honesty, I had never heard of autism prior to that.

Shortly after my son turned one, my husband and I noticed that he was not meeting all his milestones, particularly speech. By the time he was 18 months old, he was far behind the norm for speech development, so we searched “speech delay” on the internet, and we came across an article on Autism Spectrum Disorder.

The article listed the signs and symptoms of Autism. We were heartsick when we realized that the majority of the symptoms listed described our son.

We started with a private speech pathologist right away. At our first consultation, we spoke about the possibility of autism, but our concerns were dismissed. Instead, we were given a pile of worksheets describing new ways for us to engage with our son and suggestions on how to encourage his speech.

We felt slightly relieved. Surely, if he did have autism, the speech pathologist would have told us so. As a result of our conclusion, we acquired a sense of complacency. We learned later on that a diagnosis of Autism Spectrum Disorder does not come as easily as we had thought. Several months after following the “speech enhancing” guidelines, we returned for his reassessment. His speech hadn’t progressed as we had hoped. My husband and I knew in our hearts that it was more than a speech delay. This time, our concerns were taken seriously, and he was referred for an Autism Diagnostic Observation Schedule.

It was April 2010. The assessment was comprehensive and a little tedious. As the appointment was coming to an end, the words “Autism Spectrum Disorder” were spoken. It was exceedingly ironic to us that our son was given this diagnosis in the very month of “autism awareness.” Left to our own devices, we navigated through the array of choices in Autism intervention. The first year of diagnosis was spent juggling speech therapy, occupational therapy, ABA therapy, biomedical intervention, social groups, specialist appointments, blood tests, ultrasounds and a muscle biopsy to rule out any contributing factors.

We didn’t speak about our son’s autism with other people. We felt as though no one could fully understand the impact it was having on our lives, and so we went along solitary within the chaos.

A year passed and I began to hear of autism as the month of April was approaching once again. I appreciated the acknowledgement of autism within the community during that time, but I was greatly disappointed with the lack of understanding during the other 11 months of the year.

And then it became clear to me.

We had just spent the last year of our lives with our son’s autism diagnosis concealed. Outside of discussions in our home, we hadn’t spoken publicly of autism at all.

We expected society to understand autism, but we, ourselves, had not articulated our own experience to anyone else. I realized, then, as a parent that my help was needed in order to educate others about autism. I decided to start with my son’s immediate social circle, his preschool classmates. I wrote a story titled Clever Carter, and his teacher read it to the class. I also wrote a letter to the parents of those students explaining Carter’s behaviours, and gave suggestions on what they could do, or what their children could do to help him succeed. The story and the letter were well received.

Once again, it was the month of “autism awareness” and I had just now, after a year of the diagnosis, reached my own individual level of enlightenment.

It has been three years since our son was diagnosed with autism, and though we are nowhere near the end of our journey, we have learned a multitude of lessons along our way. The most important piece of advice I can offer you is to talk about it. Don’t try to go through it alone; it will make all the difference. There are people in this world that will be empathetic to your situation, and they will genuinely want to help you. By sharing your story,you will learn, as well, that you are not alone. There are other families that will connect with you, and they will become your solid foundation of support as you continue your endeavor through autism.

The book Clever Carter is now available in e-book format from Kobo and Amazon.ca. Visit them online at www.clevercarter.ca or on Facebook!