6 Realities Of Life As The Parent Of An Autistic Child
If you've have a friend who obsesses over a hobby instead of spending time with people, odds are that someone in the vicinity has made the "autism" joke. Autism in popular culture has come to mean "smart, quirky, and possessing no people skills." You know, like Sheldon from The Big Bang Theory. Hell, it barely seems like a disorder at all; just a specific kind of geeky personality. But saying that someone has autism is like saying that they have "an animal" in their room. Are we talking about a hamster or silverback gorilla?
After all, some forms of autism are so severe that the sufferers can't speak, or even begin to care for themselves. We spoke with Ryan Nichols, whose seven-year-old son Sam is on the "gorilla" end of the spectrum. He told us how ...
Sam bites things when he is upset. This has led to more than one broken phone when we weren't paying enough attention. On one occasion, he took a drinking glass and bit clear through it, cutting his lip. We had to quickly get him away from the broken glass and make sure that he didn't swallow any of it.
Dr. Spock is strangely silent on what to do when this becomes your parenting situation.
There was a similar incident in which Sam had a handful of popcorn kernels in his mouth, and when I tried to fish them out, he bit down on my finger -- hard. Like, bear trap hard. My wife was outside and couldn't hear me screaming for help. I tried to massage his mouth and pleaded with him to stop, but to no avail. It was very hard to remain calm and not do anything rash until he finally settled down and released me.
Now, before you run out and demand that all autistic kids be legally required to wear those Hannibal Lecter masks, let's make something clear: By far, the most frequent victim of Sam's impulsiveness is Sam himself.
So bandage up that finger quick, because he's the one who's really in danger.
Recently, Sam wandered off without me for the first time. I was in the bathroom upstairs, and when I got out, I saw him playing with his Matchbox cars, doing his normal routine. I thought nothing of it until I heard my neighbors knocking on the door. Upon answering, I learned that Sam had gone outside, jumped excitedly on a parked car, and tried to get into the neighbor's house, all in the span of the five minutes that I was on the toilet. Thankfully, my neighbors know Sam and helped lead him back into the house without incident. We've since added a top lock to the door, but Sam running off is now something we have to be constantly vigilant about.
Certain obsessive behaviors can also lead to self-harm. One huge challenge we have is that if Sam has a runny nose, he will rub his face raw. More than once, he's come home from therapy with a deep rash on his face, because he's done nothing but rub it like a dude with a head full of angel dust for the last seven hours.
Repetitive scratching, picking, and rubbing may not sound too dangerous, but can end in broken bones, blindness, and death.
The first few times this happened, we didn't know what to do, other than restrain him so that he couldn't remove the healing ointment we applied to his face. This failed miserably, because he wound up rubbing his face on a wall, floor, or any object he could find. We had to stay home from work and physically block him from rubbing his face as often as we could throughout the day, which is a fantastic excuse to try to explain to your boss. Since then, my wife has come up with a brilliant solution: She takes a sheet of paper and writes down every number from 100 to 0. Sam isn't allowed to wipe the ointment off his face until it ends. Countdowns are a lifesaver for us; Sam can focus on the progression, where otherwise he thinks that unpleasant things will never end.
He Has Only Rudimentary Communication Skills
Sam communicates both at therapy and at home with an iPad, utilizing a series of menus to navigate to what he would like to say. He can communicate basic needs, like "I want to eat a giant container of grapes" or "I need to use the restroom," but can't say anything that is not already programmed in, such as "I find the metaphors in the Twilight series to be ghoulishly contrived." If he sees something he wants, he can vaguely point at it, but what he will usually do is take your hand and place it on whatever he is interested in. This is fine for shopping, but isn't appropriate in most other situations.
Why don't you ask me to stop breathing, too?
One striking example of this came during our outings to Target. There was a period of several weeks during which he would throw a giant fit every time we tried to go into the store -- grabbing himself, grabbing me, and jamming his shirt and anything else nearby into his mouth to bite in frustration. A few times, we left without buying anything, and he cried inconsolably for over an hour because he was so upset that we weren't able to understand him. Eventually, we figured out that he was throwing fits because he wanted to go to the Starbucks across the parking lot for a bagel with cream cheese. Which is reasonable, because cream cheese is delicious. He simply didn't know how to communicate that desire effectively.
Feel free to walk up to someone today and try to convey this concept without the ability to speak or write.
As Sam gets older, he is becoming more aware that he is unable to communicate what he's thinking, and this devastates him. Sick days are extremely challenging, because he can't tell us what's wrong. When he was five, he had strep throat like clockwork about once every two months. The first few times he got it, it took me days to figure out what was bothering him, because he never pointed to his throat or indicated in any way that he had pain there. I've since learned to immediately check his throat like some kind of Throat Whisperer every time he gets sick, but I also know that my child might not be able to tell me when he's seriously ill, and that's terrifying.
This lack of communication is something strangers can never understand. I've had people try to communicate with him and look shocked when he either didn't respond or responded with a high-pitched squeal. Others get offended, assuming that he's a spoiled little boy with no manners. This was often compounded by the fact that Sam used to always carry an iPad -- which, if you remember from earlier, was his only means of communicating when he was younger. We got a lot of dirty looks from people assuming that he was another bratty child who needed a screen in front of him at all times because his parents couldn't be bothered to pay attention to him.
He Can Watch The Same Few Seconds Of A Movie Over And Over, For Hours
Sam rotates through movies every couple of months, which is typical for lots of kids ("LET IT GO! LET IT GOOOOO!!!!"). But Sam will choose a very specific section in each one to become infatuated with. One of his current favorite activities is watching Cruella de Vil's car come screeching to a stop in 101 Dalmatians over and over again. If we allowed him to, he would watch those same three seconds for hours at a time.
This. An entire afternoon of this.
He has no interest in live-action movies, but absolutely loves cartoons of any kind -- even terrible ones like Balto III: Wings Of Change, which was never meant for the world of men. He'll mimic the characters' actions on screen. During Frozen, when young Anna is waking up young Elsa to build a snowman, he gets on the couch and mimics climbing onto a pretend sister, putting his arms on his face in exasperation, and then falling off the couch onto the ground. When he watches The Nightmare Before Christmas, he likes to fall down in sync with Jack Skellington when he tumbles into the snow pile in Christmas Town. For whatever reason, he has a much easier time relating to the movements of these animated characters than to the world around him.
We're pretty sure that Jack understands.
Playing with miniature cars is Sam's other favorite hobby. He loves to examine his extensive Matchbox collection every day -- often several times a day -- by picking up each car one at a time, holding them with one hand, and using his other hand to quickly tap his fingers along the bottom before putting them in a discard pile. I try to practice a new trend called "affinity therapy," wherein you embrace a child's interest/obsession to help them practice skills they may be lacking. For Sam, that means taking his cars, grabbing a handful, and having him count them to practice his numbers, or holding them up one at a time so he can practice saying their colors. And as a special bonus, I get to injure myself stepping on all these cars when he leaves them around the house.
Autism Immediately Became Our Entire Life
So ... how do you care for a kid in this situation?
Sam was given his diagnosis at 18 months. Starting out, we were ridiculously fortunate to be able to take advantage of a law in Arizona that requires insurance plans to provide in-home Applied Behavior Analysis (ABA) therapy. Before you rush off and move there, keep in mind that Arizona is literally one of the absolute worst places in the nation for children and their parents. I was told at one point that we were one of only 50 families in the entire state that met the very restrictive requirements for coverage. Those services bill for $3,000 or more every week and would have otherwise been completely out of our reach, since that's the equivalent of buying a new Mercedes every six months.
In case you were wondering why insurance companies would fight that tooth and nail.
That said, keeping the insurance we needed to cover Sam's therapy proved to be a huge challenge. My wife quit her master's program to become a stay-at-home parent. I was often working 70-80 hours a week at an extremely stressful job, which I couldn't quit, because leaving would mean losing Sam's therapy. After changes at my employer lead to the therapy no longer being covered, we moved 1,000 miles away, leaving behind our friends and family, to continue Sam's treatment. During the last few years, certain provisions of the Affordable Care Act have made it so that Sam can get therapy through plans that are not shackled to work-sponsored insurance, which gives us a lot more options.
So instead of school, Sam gets one-on-one therapy seven hours a day. Instead of receiving test scores, I get back graphs on the amount of times per day he has grabbed someone else in frustration, or how many times he correctly approximated the word "spin" ("spuh" in Sam-speak) when he wants to be flung around.
If all schools had this policy, every student would win a perfect attendance award.
His therapy clinic uses specialized programs like Handwriting Without Tears and Math-U-See to help him learn reading and writing. When a child is nonverbal like Sam, traditional tests can't be used to assess their skills and progress. For example, a lack of spoken language does not prevent one from having great reading and math skills, the same way a lack of culinary experience does not prevent you from enjoying a pizza. Specialized tests like the VB-MAPP are used to assess children's abilities without relying on written or spoken communication (unless that is specifically what they are testing for), and these programs have helped reveal that math is one of Sam's strongest skills.
Surprisingly, therapy is a topic that I end up explaining often. Normally banal conversations can suddenly transform into A Very Special Episode. Polite introductions lead to questions like "Do you have any children? How old? What grade are they in?" That last question makes it difficult to avoid talking about Sam's autism, because obviously he's in therapy instead of school. I'm not ashamed of my son, but I don't feel like detailing my child's medical history to every stranger I meet. I guess I'm weird like that. Oh, and speaking of conversations you can't avoid as the parent of an autistic child ...
When some people talk to me about autism, they immediately want to know my opinion on vaccines. They feel like after they hear my answer, they will know whether they can trust my opinion on anything else I have to say. In fact, I guarantee that some people are reading this article solely to see what, if anything, I say about vaccines.
I do not believe that vaccinations cause autism. I also never think about vaccines in my day-to-day life. Like most, I accept them as part of living in a civilized society, and am well aware of their benefits. I completely agree that the belief that vaccines lead to autism is both incorrect and detrimental to society, and that everyone should be responsibly educated about them.
Note: Unsourced comments and infographics on Facebook are not how to do that.
That said, I find it in extremely bad taste to argue with another parent who has an autistic child about this subject. For many, their child experiences something called regressive autism. In those circumstances, their child develops normally until around the age of 18 months to two years, and then suddenly loses their social skills and ability to speak. I can't imagine having a child who is developing normally and then suddenly transforms into a shadow of who they once were. When those parents turn to doctors and scientists for answers, they're told that no one knows what causes autism. It's impossible for some people to accept that.
You can't blame parents in this situation for wanting anything to be responsible besides simple, pitiless bad luck.
So when someone provides an answer, no matter how flawed and dangerous, it's not difficult to understand why parents believe it. As a society, we need to understand that these parents are hurting, and focus less on shaming them for their beliefs and more on educating people who are not yet parents. You have to get out in front of ignorance in order to defeat it, and the ignorant still deserve your sympathy.
Most People In Sam's Situation Are Abused At Some Point
One of the most common questions that people ask their loved ones is "How was your day?" Sam cannot respond to that inquiry in any meaningful way. If he could, I'm sure his response would be something along the lines of, "It was great, Dad! Another typical day of playing with cars and jumping on couches."
My son is Tom Cruise, is what I'm saying.
However, the fact is that Sam can't tell me if someone was mean to him, if he is sad about something that happened, if he saw a car that he thought was cool, or what the best part of his day was. We do our best to make sure that he is always with people who look out for his best interests and will take good care of him. But the harsh reality is that it is likely that he will never be able to take care of himself independently. And the chances that someone in Sam's situation will be abused in their lifetime are staggering. Seventy percent of disabled adults state that they have been abused, with 40 percent of those cases being sexual in nature. Even when the abuse is terribly obvious, the abusers aren't always arrested, or even fired. Sometimes, they are merely transferred to a different facility.
If Sam were to be abused, it's likely that he would be unable to let anyone know what happened (that's why people like him make such ideal victims for monsters). A constant worry for us is trying to imagine who will take care of Sam after we die. How can we make sure he lives a full, good life with people who love him after we're gone? Or alternatively, how can I become a Highlander?
Con: Can't really help my boy while serving forever-life sentences for beheadings.
When I first learned that I was having a son, my dream was that he would have success beyond anything I ever achieved. After Sam was diagnosed, I had to mourn the idea that he might be better educated than me, or that he might have a more prestigious profession. I had to accept that measuring his life against mine was both an unfair burden and had no bearing on his quality as a person.
I accept the fact that Sam may be unable to take care of himself, but that doesn't mean I can't work as hard as I can to give him every opportunity to succeed. We are extremely fortunate to have an awesome extended family, but over the course of Sam's life, he will be taken care of by many people outside of that support system. I can only hope that those who do take care of Sam will love him as much as we do -- or at the very least, that one of them will have access to a Lazarus Pit I can borrow.
Sam is a member of The Miracle League, which provides a Little League experience for children like him. Ryan would appreciate it if you support the group here. Carolyn would appreciate it if you send your own story to Tips@Cracked.com
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For more insider perspectives, check out 6 Things People With Autism Would Like You To Know and 5 Awful Realities Of Life With An 'Invisible Illness.'
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