Helpless – The Truth About Parents of Children with Autism

Picture this – a roller coaster you did not choose to ride, with no way of getting off, no seatbelts, you pay every time it passes go, and you get a few pictures along the way. 

For parents of children with autism, this may be truer than even we want to believe. The word helpless was not something I ever wanted to be part of my vocabulary. I was born with a type A personality so I always thought I would have control of my destiny and my actions, and I knew what I wanted in life way before many others my age. 

Oh, how life has a funny way of hitting you in the kneecaps.

Early in our journey with autism, we realized we were passengers. 

We may get to pick the destination but the journey would not be up to us to dictate. Some days it comes with tears, fights, screaming, and the odd toy being tossed at the windshield from the back seat. Others, it comes with two of the most enjoyable, laughing, playing, screaming joyfully kids with not a care in the world. The part that really sucks is that we don’t get to pick which journey we are on until we are pulling out of the driveway.

The first real feeling of helplessness came with the emergency visits. We joke that having non-vocal children is a blessing sometimes, as it lowers the amount of arguments we have with our children, but truthfully, having a child who cannot tell you when they are hurt, or when they feel sick, or even what they want gives you a significant feeling of helplessness. The iPads helped significantly as they allowed us to understand some of their simple desires and wants, but even that falls short when it comes to pain or sickness. Add that to the fact that our children have a pain threshold 10X that of typical children, and it could be a recipe for disaster if we are not always on call.

I once heard a story from an adult living with autism that some outbursts were triggered by events from days or weeks earlier. So trying to figure out why one of our children is having a meltdown on Wednesday afternoon may have been due to not going swimming on a Saturday was a new concept to us. You try to calm them down by saying “what’s wrong” or “show us” when in reality, they may not know why the behaviour has occurred. This is again a trying moment as you never want your children to sob uncontrollably or be aggressive for no reason. At least knowing it may not have anything to do with the current situation makes it easier not to get angry or disappointed.

Our current situation revolves around medications (as it most often does). We are still trying to figure out the right cocktail for the boys to function as best as possible in public settings. You measure anxiety versus erratic behaviours versus outbursts and hope that the most current mix of “large name” medications works. The most recent issue has been weight gain. Both Amy and I are very cognizant when it comes to health and diet, but when a medication is the leading indicator of weight gain with no change in foods, it becomes frustrating. You are helpless as your child eats the same thing they did yesterday and all of a sudden is up ten or twenty pounds in a month. And this is not something you can then help them get off, you have to hope the meds change and their amount of activity leads to weight loss. Most adults can’t stick to a diet and exercise, but in kids with autism, it is an even larger stretch.

I write this not to have others feel bad for us, but to tell others it is not “their fault”. 

Most parents of children with autism take every outburst or every crying spell as a lack of parenting moment. You get the stares from the Tim Horton’s parents sitting on the benches at the park, or you get the glares if you heaven forbid happen to be in a movie theatre. I still get uncomfortable with others judging my family, even though I tell myself they could not walk in my shoes. I heard a line the other day from a business meeting that fits well for my grand finale ending.

“Do not take criticism from those you would not take advice”. Trust me, you have no idea what parents of children with autism are going through.