My family has autism: a personal story

By Kat Johnson

April is Autism Awareness month. “Autism is a developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them. It is a spectrum condition which means that while all people with autism share certain difficulties, their condition will affect them in different ways.”

My son has autism. His autism is high functioning, which means he doesn’t display most of the physical characteristics that most have come to associate with autism…no rocking, no arm flapping, no spinning the wheels of his toy cars for hours on end. He spoke early and hasn’t stopped since. The bulk of his challenges come in the form of social and behavioural challenges. In fact, we didn’t even recognize there was a problem until he started school and even then it took two more years to identify the issue. And it wasn’t like we weren’t paying attention. He was our first born – I read every book, subscribed to every newsletter and completed every checklist there was to make sure he was on track developmentally and otherwise. And he was.

And then he started school and teachers reported him having trouble making friends. And then he began to have issues with impulse control. Soon his behavior was completely out of control. He was a “bad kid.” My kid? But he has the biggest heart in the world. He is so kind and loving. Surely it’s just his big personality being misunderstood. And then he got older still, and he got angry and sad. Did I mention mad? Soon the school was calling me to come get him. He had to be removed from class, he was scaring the other children. They had to take away his shoes, for his own safety. He was running away from school, they would have to call the police. How did we get here? What was happening?

We had to stop doing extracurriculars. It wasn’t fair to the other families participating to have my son disrupting their fun or demanding more attention than the others. We stopped visiting with friends, because it was embarrassing to have no control over his behaviour. To have them think he was a bad kid. And that I was a bad mom.

Although I didn’t understand what was going on with him, I at least knew that it was SOMETHING. Something was different, something was wrong.

I hired a therapist, connected with a private resource teacher, showed up to my family doctor in tears. Please help him! Please.

Shaun

We were sent to a pediatrician and began the long process of finally figuring out exactly what was going on with my child and his busy little brain. We were told it was ADHD. Or maybe ODD. Or maybe poor self-regulation. It might be depression. Or anxiety. Or both. Is childhood bipolarity a possibility? We spent a long time discussing possibilities and trying different things. Therapies, medications, everything offered or suggested to us.

The school was still calling, my son was still in crisis and I was slowly losing my mind. I spent most of my nights in tears. I was heartbroken – for him, for me, for us. Our life was chaos and I didn’t know why.

When we started medication, we were judged for it. Behind our backs and to our faces. “Medicating a child is wrong…It’s terrible that they are giving him medicine just because they didn’t do their jobs as parents…he is going to resent you when he grows up.” I couldn’t win. Without medicine, he was a bad kid – the direct result of my bad parenting. But giving him medication made me a bad parent too?

It was a difficult time for us. We had a child who was spinning out of control and I felt like everyone was against us.

We continued with therapy and social development groups and behavioural modification strategies. But we needed his brain to be settled enough to have some of these strategies stick.

I eventually decided that his wellbeing mattered more to me than an outsider’s opinion. If the doctor had diagnosed him with asthma, I would have given him an inhaler. If he had diabetes, I wouldn’t have second guessed giving him insulin. If his heart did not function properly and a doctor told me medication would help it do so, I wouldn’t question the decision. Yet because it was his brain not functioning properly, suddenly the decision to give him a medication to potentially improve it was open to opinions from everyone.

Eventually his behavior started to settle. He still had his bad days but overall he was able to hold it together more than ever before. But it was exhausting for him; he had to put so much effort into simply existing and he tried so hard to be “normal.” And something still wasn’t right. He was getting older and the differences between him and other children were becoming more obvious. The divide between him and others was getting bigger. He didn’t have friends to play with at recess. Kids who he had known for years, suddenly sided with the bullies. One classmate told him that she would have invited him to her birthday party, but her mom said she didn’t want a “crazy” kid like him to show up and ruin it.

Shaun and Kat

I continued to push the doctor for answers. I’m not a fan of labels, especially not on children but I knew in order to get my son the help and support he so desperately needed, he needed an accurate diagnosis. Many more months passed. I read everything I could, I listened to the parents of other children with special needs, and I consulted with any professional who would listen. And over and over I would arrive at the same conclusion…I think my child has autism. It was all there, right in front of me. And always had been. But we had all been so focused on the outbursts, the behaviours, the de-escalating of crises, that the root of all of that was never considered. He wasn’t throwing his shoes because he wanted to hurt his teacher, he was frustrated and his brain couldn’t process the appropriate thing to do or say. He wasn’t refusing to wear his sweater to be a brat, he couldn’t tolerate the feel of it. He wasn’t screaming to disobey me, he was blocking out the external noise that his brain just could not handle.

Doctors did their assessments and eventually confirmed the diagnosis and guess what? Absolutely nothing changed. That’s right, having a diagnosis does not change a thing. It provided an explanation to the school and maybe to others who we shared it with but my son was still my son and having a piece of paper that says “autism” did not and does not change a thing. Life was and is still difficult.

He sometimes yells and screams constantly but any noise made by someone else will send him into a meltdown. He gets hung up on a topic and becomes fixated for days, not able to move on. Once, his brother got a haircut and he cried for three days. Last month, I painted our living room and he refused to go in it for a week.

This is our reality. This is our life. We try and do “normal” things, but it’s usually a disaster. Family outings, school events, a simple trip to the grocery store. We have exhausted our friends and family. Strangers think the worst of us. I’m pretty certain our neighbours think we are crazy.

I notice the reactions of people around us. I see them rolling their eyes when my son is misbehaving. I hear whispers: “My children would never act like that.” I see judgement in people’s eyes. And I understand. I just wish that people would look a little deeper.

(Clockwise from top) Kat, Marlee, Shaun, and Preston

We are loud and wild and crazy. But we are so much more than that. We are a family full of love. For all the difficult moments we have, I am rewarded with an equal amount of wonderful ones. My son is a beautiful, funny, and smart boy. He has a huge heart and gives love like no one I have ever met. Even in the darkest of moments, never have I ever wished for him to be different than he is. Never have I wished he were “normal.” Never would I ever trade him and our experience so far for anything in the world. I have spent the last eight years learning and growing and he has been my teacher. He has taught me how to love unconditionally, he has shown me how to be strong, and he has brought joy to my life that I can’t imagine existing without. His younger siblings look up to him like he is their hero. His father and I couldn’t have asked for a more beautiful soul to bless us as parents.

I am often asked questions or hear comments when someone finds out my child has autism: “What caused it?” (We don’t know.) “Can you fix it?” (We wouldn’t if we could.) “I knew someone with that.” (Okay…) “Oh, he doesn’t look autistic.” (Ummm, what?) And more often than not people seem to feel sorry for us that we have a child who suffers from autism. But please, we don’t want your pity. Compassion? Understanding? Patience? Absolutely. But please don’t feel sorry for us. My son doesn’t suffer from autism. He is living with autism. We all are.