Fighting for Will

A Mother's Story of Her Son with Aspergers Syndrome

While it is said that a mom knows her child best, it can also be said that it’s hard for a mom to see what is staring her in the face.

My son is being evaluated for Asperger’s. I was shocked when it was suggested. In the fall, my husband and our eight-year-old boy William returned from an appointment at the children’s hospital. My world changed in one sentence. “They want us to fill out these questionnaires to rule in or out Asperger’s.”

Asperger’s Syndrome is on the Autism Spectrum and is characterized by difficulty in social relationships. That night I got in bed, pulled the covers over my head, and cried. Then I called my mother and made her cry. Later that evening, my friends Gin and Tonic visited.

I wrestled a referral to a Mood and Anxiety Clinic for Will out of our family doctor at the end of grade two. We had no private insurance left for the year and Will experienced severe school avoidance in both grades one and two. Many weekday mornings there was crying (his and mine) and complaints of sore throat or upset stomach. Once, he feigned a limp so convincingly that he scored an x-ray.

Both on the bus and in the yard he was punched, kicked and had play equipment taken from him. We fought to have him directly supervised in the yard. The classroom appeared uneventful, but he was struggling to read and had no friends.

In grade two, thinking a learning disability was contributing to Will’s anxiety, we had him evaluated privately with a psycho-educational assessment. Our school board provides these, but the wait is long. Health insurance covered $700 of the $2,500 cost. Mastercard picked up the rest. It was then that Will was diagnosed with a processing speed disability. He was too young for a diagnosis of a reading or writing learning disability, but was identified as being at risk. He was found to be above average in math.

When we informed the school, we were surprised to hear that they had expected an ADHD diagnosis. But, with this diagnosis now in hand, I met with the school and an IEP (Individual Education Plan) was created for him. I felt some relief but the relief was brief. August before grade three saw the beginning of our journey with a children’s hospital. I was expecting therapy for Will’s school anxiety, instead we went in a direction I had not considered.

At the Mood and Anxiety intake interview, Will was all over the chair and on the floor. “He doesn’t do that normally. Just when he's excited.”  I said. He spoke with a funny sing song voice. Again I said, “He doesn’t do that normally. Just when he is excited.”  The psychiatrist looked at me.

I started to consider the things that I experience every day with my boy. We cannot vary his bedtime routine. If he goes to bed without a story he will not sleep. He has no concept of time. Once, he was on the computer for three hours. He got angry when we turned it off because it had only been “five minutes.” When there is a conflict with one of his three sisters, Will is fine one moment and screaming the next. If we do not run, things escalate to the point of someone getting hurt.

As a small child, when Will got upset, he couldn’t be soothed by hugging and talking. I remember him standing in his bedroom doorway crying, drooling and unable to verbalize the problem. I had to forcefully tell him to stop crying and to calm down.

He repeats himself over and over with slight variations. You can’t just respond or agree. You have to tell him, “I heard you. You can stop saying that to me.” He runs like his legs can’t figure out how to go faster. When he was three his gymnastics teacher was concerned about his gait. At eight, a pencil still looks odd when he holds it.

These are things that can be symptomatic of Asperger’s. His inability to make friends and the conflicts in the yard make sense if he has Asperger’s. People with Asperger’s can have difficulty understanding facial expressions and the unsaid parts of a conversation. They can also have difficulty with empathy and talking about something other than their own interests. But one key feature – an obsession with something like Star Wars or cars or dolphins – doesn’t seem to be there. Or, maybe it is. Will and his dad have been obsessively discussing common interests for years. For a while it was Pokemon and then it was Harry Potter and then Green Lantern. Currently, it is Dr. Who and the Tardis and Daleks. My eyes cross when the discussions start.

Asperger’s Syndrome is known to have a genetic link. I look at both my husband and his adult brother and I wonder. For the moment, there is no way to confirm my suspicions. Will’s teacher, my husband and I each filled out a questionnaire. None of us responded in the same way and as a result, no formal diagnosis was made.

This month, William will be evaluated with the Autism Diagnostic Observation Schedule (ADOS) which is less subjective than the questionnaires. Whether he has Asperger’s or not, the hospital is providing us with occupational therapy to address Will’s symptoms. I now understand that we can never skip a bedtime story as William’s rigid thinking doesn’t allow for this change in his routine. William is also learning the appropriate way to have a conversation with another person.

Of note is that now, for the first time, we’ve been told that our son’s behaviour isn’t a result of our ‘bad’ parenting. That one small thing makes a huge difference. Every phone call from the school about an incident on the playground had beaten me down a little bit more. Suddenly, we are with people who understand why Will acts the way he does and want to help us. There is no blame.

With guidance from the occupational therapist, we are learning to parent our child the way he needs to be parented. While it is true that I sometimes can’t help but wonder how much better Will’s life would be if his father and I had recognized his differences for what they were earlier, I can’t change the past. Now, armed with a better understanding of what his brain and his body need, I anticipate both a lot of work and better days ahead. I also intend to be a far stronger, more educated and relentless advocate for him.

He’s my boy.

Heather Ann is a 44-year-old veterinarian, wife and perpetually tired mom to four children ranging in age from 11 down to 15 months. She is a social media addict and can normally be found two-fisting it with both an ice cold bottle of Diet Coke and a heavily sugared coffee. Tooth whitening is probably in her future.