A fathering autism story
Being an autism dad
As a child, I remember playing in the mud. A lot. As a teenager, I remember listening to music. Probably louder than I should have been. Children and adolescents learn about their environments because their brains are getting input from all their senses. Fathering autism has made me live that differently.
For us, neurotypical folks, the brain can quickly and easily decide which of these sensations deserve attention and which sensations to ignore. However, for those with sensory processing issues, it’s not quite so simple.
Being a father of an autistic son with a dual diagnosis
My wife and I have two children. Our 12-year-old son, Vince, was born with Down syndrome and diagnosed with autism around his third birthday. Vince has a strong sensitivity to many things in his natural environment. Vince also has severe limitations with intellectual capacity and speech. These limitations make it very difficult for him to tell us what he is feeling or thinking. As a result, we are often guessing at what may be causing his behaviors and aversions. Having to guess is a part of fathering autism, too.
Vince has many self-stimulating behaviors (stims), which may appear odd to those who aren’t used to them. He has vocal stims, like repetitive sounds that he will make. He will often rock with his full body, whether he is sitting or standing. Also, he has some of the classic autistic stims like hand-flapping, toe walking, and chewing on his fingers, clothing, or anything else he can get his mouth on. Our best guess is that these stims are a way of compensating when he is under-receptive to sensory input.
These stims may seem harmless, but sometimes they can be very dangerous. For example, toe walking puts him consistently off-balance and makes him more likely to trip and fall, especially when he is rocking while also walking on his tiptoes down a flight of stairs. Finally, chewing on foreign objects is a big problem. Although, Vince does have a plastic chewy that clips to his shirt to minimize that. Stims take some detective work on the part of a father of an autistic son.
All babies are given a hearing test when they are born. Children with Down syndrome have a higher rate of hearing problems, so they are often given more advanced screening and more frequent hearing tests. Vince has his hearing checked every year and always passes with flying colors. However, many sounds appear to bother him, which can negatively affect our day-to-day life. For example, the sound of a dog barking creates paralyzing fear in Vince. So much so, that he has come to fear all dogs, regardless of the size or if they bark or not.
Mealtime is always interesting at our house. Vince has aversions to certain textures and prefers foods that are pureed or mashed until they are smooth. He does fine with most meats as long as they are cut small, but he often tries to put too much in his mouth at a time, adding a new morsel before he has finished swallowing the previous bite. This creates a choking hazard. Don’t forget, he rocks almost always, including while eating, again another choking hazard. We’ve had many scary episodes at the dinner table having to perform the Heimlich maneuver on Vince. Every meal in our house has this constant anxiety around when the next choking episode will happen. Add worry to the life of fathering autism too.
As the father of an autistic son, we work hard to teach Vince independence with daily living skills. For example, potty-training is an essential and time-consuming issue for any parent with special needs children. This is especially true if the child has sensory processing issues. Vince is potty-trained, but still has some problems with public washrooms that most people would never think about. Being an autism dad makes me pay attention to different things.
For instance, Vince has never learned to pee standing up, so he must sit on a toilet. That is fine as it’s not a hill we’re willing to die on. However, some public restrooms have sensors that automatically flush when the person stands up. I assume this kind of toilet was invented for sanitary reasons. But when the user is constantly rocking back-and-forth while sitting on it, there is an infinite loop of flushing while he is still sitting on it. So, I have learned that putting my hand over the infrared toilet sensor will prevent any premature flushing.
Autism dad quotes, “Don’t even get me started on the hand dryers of doom.”
I assume these automatic hand dryers were invented to save trees. Sadly for them to work they must contain a motor that sounds like Satan’s screams from the bloody bowels of hell. We can’t just carry paper towels with us or tell him to wipe his wet hands on his pants either because the sound of a stranger using the hand dryers is enough to put an end to the bathroom trip.
I do not doubt that personal hygiene is a common issue for any 12-year-old boy. For Vince, washing is an unwelcome task as he doesn’t like touching and rubbing. We have to help with brushing and flossing his teeth, and after years of practice, he does tolerate it. He is very good at using his tongue and lips to push the toothbrush away from the gum line, which is kind of the most critical part to brush, I am told.
Daily dental hygiene may not seem too important at his age because the dentist’s office will take care of whatever we miss, right? Not so fast. The dental hygienist has not been able to get a good cleaning on him because of the biting and tears. And as for more complex dental work, he is not able to sit still for any length of time, so we have to book the operating room at the hospital, and he has to go under general anesthetic anytime he needs so much as a filling. This is another worry as the father of an autistic son.
Fine motor skills
Vince has difficulty with fine motor skills, so he is not able to cut his fingernails or toenails. It used to be that we would have to hold him down kicking and screaming to trim his nails, hoping the neighbors couldn’t hear him. After years of practice, he is much calmer about it. He still doesn’t like getting his nails cut, but at least he tolerates it. I try to do it first thing in the morning when he isn’t completely awake yet. I think this helps make it go smoother.
Haircuts have been an adventure for us too. There are often as many tears on the floor as hair follicles following a haircut. After trying a few different local places, and even being refused service in one shop, my wife went on YouTube to learn how to cut hair herself. She practiced on me a few times and for several years, she cut Vince’s hair. It takes a lot of patience, as well as bribes of TV and snacks, but it can be done. Fathering autism is being part of a family team.
For the past couple of years, he has been getting his cut at a local shop. We make sure to book an appointment when there is unlikely to be any other customers in the place. The stylist takes his time, and we are fully aware that he may miss a few hairs, but it gets done. As the father of an autistic son, with adolescence approaching, we are already starting to think about how fun it will be to get Vince to shave.
Sensory-friendly and fathering autism
Vince does require extra appointments with speech therapists, occupational therapists, ophthalmologists, audiologists, and dietitians that most neurotypical children don’t need. Society has come a long way in accommodating people with sensory processing issues.
For example, many businesses have set aside designated “sensory-friendly” times when lights and sounds are adjusted accordingly. There is a traveling zoo that comes to town every year, and they set aside one hour for special needs families before opening to the general public. That means kids like Vince can spend a special time with the animals without the crowds and lines. Even the major theme parks in Orlando have accommodated ride passes to allow guests with sensory issues to enjoy the rides without waiting in long queues. For an autism dad, these are a necessity.
So, because of the potential choking issues, we rarely go out to restaurants. When we do, Vince always gets the same thing: French fries and a hamburger. We end up skipping some social events because Vince can’t tolerate crowds or lineups. Also, we generally avoid visiting people that have dogs. We have to be careful going to places when dogs may be present (like the park) as many dog owners think it is fine to keep their dog off the leash in public.
There is no end to the day-to-day needs of children with autism, just like there is no end to the worries their parents face. If you’re reading this and you’ve been here before, I’m sorry for the broken-record speech. Nevertheless, as an autism dad, we need more. We need more than awareness. Here is a final of my autism dad quotes on being the father of an autistic son, “People with autism need support, understanding, and a world that makes the space for them they deserve.”
Nick lives outside Fredericton, New Brunswick with his wife and two young children, one of whom has Down syndrome and autism. He has been involved in many different boards and committees relating to people with disabilities, including serving on the board of the Fredericton & Area Down Syndrome Society, chairing the organizing committee of the 2014 Canadian Down Syndrome Conference and serving on the executive of the NB Premier’s Council on Disabilities.
Nick has a keen interest in digital technology and how it can be used to engage citizens with disabilities. He has a bachelor’s degree in Computer Science as well as a Masters of Education from UNB. His professional background includes online learning, telecommunications, and public sector process re-engineering.