Two more things parents of children with autism would like you to know

I predict you will see many “listicles” and other stories floating around the social networks this week on the subject of autism given that it is World Autism Awareness Day. As a father of two boys with autism, I’ve read plenty of articles on the subject over the years. Sometimes I feel like in the great push for “awareness” that some of the messier and more painful aspects of parenting kids with autism get glossed over. So here’s a couple of ideas, taken from my personal experience, that I would like anyone interested in learning what dealing with autism is like to know.

If you’ve seen one child with autism, you’ve seen one child with autism

It’s called the autism “spectrum”  because people with a diagnosis have a wide variety of developmental delays or difficulties. They all share a common trait, which is an impairment of social, communication, and language skills. Because human learning is intrinsically tied with social skills, autism can also cause delays in a child’s cognitive development. Simple tasks like dressing oneself, brushing teeth, or other self-care activities can be delayed. In addition, children with autism often find comfort in a highly structured, predictable environment and can be prone to anger and anxiety when faced with situations that change unexpectedly.

However, the degree of impairment can be anywhere from mild to severe. There are many “high functioning” children with autism who are able to attend regular classes, go on to college, and attain regular jobs. Some even write blogs about their own experiences. Our sons’ developmental pediatrician told us she had a diagnosis of Asperger syndrome. She had very proficient language skills, and could recite an encyclopedia’s worth of knowledge about autism. She is also married with children.

Many people with a diagnosis can indeed go on to have very typical lives. However, what I see evolving is that higher functioning people are increasing becoming the “face” of autism in the media. Certainly, the stories of those who have overcome any type of challenge in their life are inspirational and relate-able. But the truth is, the experiences of a parent with a high functioning child can be very different from one with a child who can barely communicate.

One of my sons is now 11 and can only use a handful of simple words to tell us what he wants. Mostly, when I talk with him, he simply repeats what I say to him, a behavior called echolalia. My other son, who is now 13, can have very limited conversations on a few different topics. His reading skills are at about a 2nd grade level. Right now, going to college is not on the agenda for either of them. Other parents face even more severe symptoms than what our kids experience.

So for those who might want to offer encouragement to a parent of a child with autism, my suggestion would be to ask questions about what the child is currently capable of now and what the goals are for the near future. For some it might be college and a career, for others it may be to get dressed independently or read a book without any help. My family has learned to celebrate even the smallest amount of progress, and we don’t mind sharing that with others.

Temper tantrums aren’t the result of bad parenting

One of the symptoms of autism that is probably the most difficult for parents to deal with, and for others to understand, is the temper tantrum. Most parents know that when a child throws a temper tantrum, it’s because he or she isn’t getting something they want. We all know the best response is to ignore the tantrum and to not give the child what they want. Giving in to a child’s demand re-enforces the behavior and actually encourages a child to use the tactic more often. So if a child with autism is observed to throw frequent temper tantrums, sometimes people may assume that the parent has encouraged the behavior by giving in.

The causes of temper tantrums in children with autism go deeper than simply being denied a toy or candy or some favorite activity. Many times, a tantrum is a response to extreme anxiety or fear when they encounter a situation they don’t know how to handle. My boys have had tantrums over things as simple as a television show not going on at its regular time, a change in their school schedule, or even waking up at a different time than usual.

One example is when we decided one year to take a different route to our church every Sunday. On the way to church, we had no problem. On our way back, however, our oldest had a terrific tantrum. He screamed and yelled the entire way home. We figured it would just take some time for him to get used to the new route. But week after week, we saw the same behavior: fine on the way to church, tantrum on the way back. Occasionally, we had reason to use the old route, and on those days he was happy as could be. But never once did we turn around or give any positive reinforcement to his behavior. But yet it continued for nearly a year before it subsided.

In addition, children with autism often have tantrums because they simply can’t express themselves in any other way. A typical child may be able to express basic needs such as fear, anger, hunger, pain, etc. A child with autism may have a stomach ache, but may not be able to tell anyone that they are in pain, or where the pain is located. Children with autism may also have heightened sensitivity to sound or touch. Situations such as noisy, crowded rooms, or even an itchy shirt can set off a tantrum. So a tantrum is most often the child’s communication of last resort, not a learned manipulative behavior.

I’ve seen my children experience temper tantrums that sometimes last for almost a solid hour. It is probably the most stressful aspect of raising kids with autism, especially if the tantrums start happening every day, late at night, or even multiple times per day. Other than trying to avoid the conditions that trigger a tantrum, the only real solution is to work on the child’s communication skills. My 13-year-old son has made great strides in alleviating tantrums as he’s grown older because he’s been able to verbalize what he wants or what he feels. When new or unexpected situation come up, we’re able to talk it through now, which helps soothe his anger and anxiety.

Last year my family was fortunate to be able to attend several movie showings in Schenectady sponsored by Rotterdam’s Elk’s Club, held just for families with children on the autism spectrum. As you might expect, we saw some temper tantrums. One little girl was crying uncontrollably and running around the theater. Her mother was obviously torn between removing her and trying to calm her down so she could enjoy the movie. At one point the girl sat down right next to me and my 13 year old son. There really wasn’t much I could do, but all I said was “it’s OK” to her in a calm voice a few times. I’m not sure if my words did much, but at least it didn’t aggravate the situation and it let the parent know I wasn’t casting any judgement. Eventually, the parent decided to take the child out. Soon after, my own son began to get agitated. He asked to take a walk. We stepped out of the theater for a while and then came back and he enjoyed the rest of the movie. I was proud of him for that, because it showed he was beginning to understand his own emotions and was learning how to cope with them without throwing a tantrum.

I’m glad that World Autism Awareness day gives parents such as myself an opportunity to share my family’s experiences. I hope by giving you a small glimpse at some of the challenges we’ve faced, you’ll gain some valuable understanding about what parents face when raising children with autism.

Tim Becker

Tim Becker is the owner of Anthem Websites Inc. which publishes The Compass. He serves as both editor and a writer.