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Supporting Autism Means Helping Families, Too

04/02/2013 04:55 EDT | Updated 06/02/2013 05:12 EDT
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At the coffee shop, 10-year-old Clara sits across from me, trying not to let the frustration show on her face. Her curly locks bounce about her head, her normally-infectious smile is fleeting and wistful, and she asks me the question that defines our conversation in a single line.

"Do you know," she asks, "what it's like to have to call the police, because your brother's threatening your father with a knife?"

As I ponder the question, the memories flood my mind in all-too-vivid detail, and I nod my head.

Clara's brother Cliff is a 13-year-old boy with a passion for baseball and Mario Kart, and they live with their loving parents, Laura and Bruce. They have a black Labrador Retriever service dog named Basil, who's also one of my chocolate Lab BonBon's best friends. But our interactions are guided by one factor beyond anyone's control -- Cliff has autism, which means he's prone to meltdowns. These meltdowns, which vary in frequency and intensity, can come about without notice or prior warning, and can quickly escalate into a highly-volatile situation. It's a situation that I'm all too familiar with myself, having a younger brother with the same condition; and here Clara and I sit, at a corner table in a coffee shop, while Cliff and Laura are on the other side of the building trying to head off another one of Cliff's meltdowns. All we can do is wait, and as we brace for the inevitable, I remember what it was like to be in Clara's shoes.

Video games. It always seemed to revolve around video games. For whatever reason, they always seemed to light the fuse and send my own brother on the spiral towards a total loss of control. I remember the time that he lost a game of Super Mario Land, and in a rage, pounded his Game Boy against his forehead and shattered the screen. I remember the time that he broke the keyboard of the family computer by smashing it with his fist, because he thought the computer was cheating him at Number Munchers. I remember the time he bit into his own arm so badly that he drew blood, leaving a nasty round mark that lasted for weeks. The shattered stove top from when he smashed it with a frying pan. The holes in the drywall from when he punched through the wall. The memories of my brother's meltdowns are vivid and powerful, and they flow back to me as Clara tells me about life with Cliff.

Support for people with autism has grown in recent years, but is still badly lacking in many ways. A few weeks ago, Cliff had a meltdown in Promenade Mall, and no hospital would admit him. The wait-lists for therapists are unbelievably long, and as families struggle to arrange care for their children with autism, their siblings often end up feeling ignored or neglected. Clara conveys this to me during our conversation, wondering if it's OK to feel upset about it.

"It's like it's all about Cliff, all the time, and I feel like my own needs are always secondary." I reassure her that it doesn't make her a bad person to feel like she deserves more attention than she receives, and I remember how guilty I felt years ago, as I tried to articulate those same feelings to my own parents. I love my brother, but I hated having to leave Canada's Wonderland after 45 minutes because he couldn't control himself. For a moment, Clara and I lock eyes, as we both recall the times we felt cheated by a situation we had no control over, and felt resentment and anger over the situation. We both knew it wasn't our respective brothers' faults, but that didn't make things any easier to deal with.

As our conversation continues, Laura decides Cliff needs to leave the coffee shop immediately, as he continues to escalate. He reaches out and tries to punch the support worker who's recently started working with Laura's family, and Laura gets up and takes Cliff outside. She asks me to give Clara a ride home, and I readily agree, assuring her I'll spend time with her until Cliff is under control. Our conversation turns to video games, artwork, nail polish -- there's an unspoken understanding between us now, and the mood lightens considerably. As we chat about puppies and cartoons, her smile returns, her curls bounce around her head, and she's just back to being a normal 10-year-old girl.

The entire incident reminds me of how vital family is in the care of youth with disabilities, and autism in particular. Parents and siblings do the front-line work, and have to identify potentially-volatile situations before they erupt. It's a full-time, daunting job, and requires its own set of support structures to ensure success. In this regard, the system is badly lacking, and those support structures are virtually non-existent. Today, on World Autism Awareness Day, I propose expanding our approach to the therapy and care of youth with autism, focusing on three main areas:

1) Autism needs to be viewed holistically, with an integrated approach that involves the entire family. It's not enough to just give the kids drugs and hope they work, because when they don't, it's the family members who become the first responders. It's important that every member of the family feels included, and not left out because all the attention seems to be focused on one member; integrating families into the care of youth with autism is a vital aspect of treatment that is often ignored.

2) Services need to be age-specific and tailored to the specific needs of different individuals. People with autism show a very wide range of functionality, with some requiring constant care and others just needing a bit of direction. There are services for young children and some services for adults, but for youth in their teens, there's a real lack of understanding. This needs to be addressed.

3) There is a dire need for a crisis centre for people with autism, because the existing services are unable to cope with the need for nuance and understanding. There needs to be a concerted effort to train health-care professionals, law enforcement officials, and other first responders, to reduce the potential for harm involved with meltdowns similar to the ones Cliff and my brother experience. A crisis centre with specifically-trained personnel, as well as facilities to help youth with autism and their families cope with stressful situations, would go a very long way towards helping everyone involved.

The most recent estimates suggest that one in every 100 people is afflicted with some form of autism, and the number appears to increase every year. When factoring in families and loved ones, it is clear that this condition affects our entire society, and requires significant commitments from communities, politicians, and health care professionals. Some politicians, including Peter Shurman (the MPP from Thornhill) have pushed for a crisis centre in Ontario. But clearly, more needs to be done.

We cannot allow people with autism and their families to continue without support, without structures in place to help them cope. We cannot permit children like Cliff and Clara to be swept aside. We must find a way to give people the support they need. We can start by signing this petition to create a crisis centre in Ontario. After all, anything has to be better than having a 10-year-old girl calling the cops on her brother.

On World Autism Awareness Day, let's stand up for our sisters and brothers, our daughters and our sons, and find a way to help families dealing with autism get the support we desperately need.