Imagine calling to your toddler only to have him completely ignore you, focused instead on repeatedly opening and closing the door to his room. Imagine hugging your child, only to have her push you away and rush off to play alone. Now imagine spending most of your waking hours struggling to find therapies, schools, and supports for your child—and then encountering what seems like complete indifference from your child.
For some parents of children with autism, this can be a normal day. Parents of children with autism deeply love and care about their children, of course, and it can be heartbreaking to feel that their children really don’t love them back. At a certain point, for some parents, it can be hard to keep up an emotional connection to someone who seems to give nothing back.
This is the “dark side” of autism—the side that has caused some activists to suggest that children with autism have had their “souls stolen.” But is it really the case that children (and adults) with autism are soulless, emotionless beings?
Of course, the answer is a resounding NO! But there’s also more to the story. As the mom of a son with autism and someone who has spent more than a decade interviewing parents and children, researching, and writing about autism, here’s what I’ve found.
The Puzzling Nature of the Autism Spectrum
Autism is a “spectrum disorder,” meaning that people with the diagnosis may be mildly, moderately, or severely affected. As a result, people with autism are very, very different from one another.
Many children with autism are not only able to talk, but are very talkative. They may want to connect with you, not just sometimes, but all the time. They may be absolutely fascinated by trains, rocks, movies, or games—and they may be so passionate about their area of interest that they can talk of little else.
Some children with autism are not only sensitive to others—they’re over sensitive. They may respond with hurt feelings or anger when such feelings are really inappropriate.
That’s often because children with autism lack the ability to “read” nonverbal cues such as facial expression and tone of voice. A friendly “put down” (such as, “You’re gonna drive me crazy!”) can be read as a real attack, and sarcasm can be understood literally.
For children on the moderate or high end of the autism spectrum, feelings can be tough to manage. It’s hard to find friends when you can’t fully understand others’ intentions or meanings. It’s hard to find acceptance when you don’t really understand the concept of private versus public conversation. But that doesn’t mean such kids don’t feel lonely, anxious, or depressed. In fact, many do. As a result, for some children with high functioning autism, Mom, Dad, and siblings are their first, best, and only friends.
Kids with Severe Autism
While it is possible that there are children with severe autism who truly can’t and won’t respond to affection, it’s very rare. The problem is not that the children don’t have emotions, but that they experience the world and other people so differently that loving words and hugs don’t mean much to them.
If a child with autism is focused on his own routines and interests, he may not even be aware that someone is trying to get his attention. If she has yet to use spoken language, she may not understand what’s being said to her. If he is sensitive to smells, touch, or light, he may actually be avoiding certain types of interaction.
In order to tap into such children’s positive attention, parents must figure out how to connect to their kids by entering into their kids’ world.
How to Reach and Connect With a Child With Autism
Most young children are social to a fault, demanding attention from the adults around. It’s the children who say, “Let’s play!” and it’s the youngsters who come up with the ideas for how to play. Children with autism, however, are often perfectly happy with just their own company. They don’t need anyone else to share in their play.
If Mom calls, “Johnny, come give Mom a hug,” and Johnny doesn’t respond, Mom may either assume “Johnny doesn’t like me,” or “Johnny isn’t ready to come to me, but he will come when he is ready.” When Johnny doesn’t come, Mom may give up on trying.
But autism is a social communication disorder. That means Johnny may not have the language skills to understand Mom’s words, and he may not be able to “read” Mom’s body language. As a result, he may not understand that open arms mean “come to me to give and get a hug,” which is our way of showing affection.
Even if Johnny does know he’s being invited to give and get a hug, he may choose not to come for any of a number of reasons. For example, if Mom is wearing a strong perfume or scratchy clothes, or if Johnny finds hugs uncomfortable, he may shy away from her.
He may also be much more interested in his own pursuits than he is in Mom.
How can Mom change this? Instead of waiting for Johnny to decide he wants Mom’s hugs—which may never happen—Mom can reach out to Johnny on his own terms. Here are a few suggestions as to how to do that, developed from my own experiences with my now-teenaged son and from the research I’ve done into the topic:
- Many children with autism really enjoy strong sensory experiences. Tickle games, chase games, blowing bubbles, and other physical activities can grab your child’s attention and keep her engaged and connected—even if no words are exchanged.
- Some children with autism respond best to approaches that include their favorite songs, TV shows, or characters. Watching a favorite video together or reading a favorite book can be a great way to connect.
- If a child with autism is already doing something that interests him—running trains along a track, for example—it’s often a good idea to join him. Even if you don’t have a conversation, you can play trains together, which is a great way to connect.
- For some children with autism, video games are a great attraction. Mom may not be a natural at video gaming, but an hour of preparation can be the basis for many shared experiences online.
While it may take extra energy, creativity, and patience to engage a child with autism in play, the results are well worth the effort. Over time, your child will begin to actively show you that she enjoys and values your company—something every parent needs to see. And every play skill your child learns will serve him well as he starts school. Playing with others, sharing, taking turns, and back-and-forth communication are all critical skills for childhood and beyond.
Main image: NYC mom Lisa Quinones-Fontanez, who runs the blog atypicalfamilia.com, and her 10-year-old son, Norrin, who has autism
Courtesy Lisa Quinones-Fontanez
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