Behavior Is Communication: A Lesson from My Autistic Son

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This originally appeared at Parents.com

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Behavior is communication when it comes to autism, especially with a non-speaking child like my 7-year-old son Liam. As much as I try to honor this truth in our interactions, however, Liam’s behavior often seems confusing, and he’s still learning to use the other communication tools (like his iPad picture apps and RPM) that he needs to tell us what he’s thinking and feeling.

For example: Recently, he had some violent meltdowns. They lasted upwards of 30 minutes each, they were happening multiple times every day and in the middle of the night, and my husband and I couldn’t discern the cause.

It was heart-wrenching to watch Liam go from peaceful to raging in a matter of minutes. He would approach my husband or I, drop to the ground, dig his fingers into the back of our knees, and pull us towards him. His hands would fly to my hair, and he’d pull my face towards his, trying to push my face against his cheeks. When I’d ask him: “What’s wrong? How can I help?”, he’d scream fiercely, pinching me, trying to bite, and hitting his head with his hands. Frequently, he’d be so full of adrenaline, all my husband and I could do was evade his hands and teeth or hold him close so he didn’t hurt himself or someone else.

Desperate for answers and at our wit’s end after having tried our many other meltdown-prevention techniques, my husband and I reached out for support. Suspecting anxiety and sensory overload, we talked to Liam’s pediatrician about anti-anxiety medicine. We talked to other parents of autistic kids, our friends, our families, and Liam’s former therapists for advice or suggestions. My mother-in-law, who worked for years with autistic children, offered practical solutions that she used in her school (wrapping kids in blankets, providing deep pressure). Other friends shared tips on what they did with their neurotypical kids during night terrors or tantrums. Although none of these suggestions really worked, it was good to tell other people what was going on and it helped us brainstorm new ways to help Liam. Finally, during a phone call with my parents, my dad asked the game-changing question: “What about his 7-year-old molars?”

Thunderstruck, I realized that this was what Liam was communicating with his surge of meltdowns. Always a late teether, he was finally getting those painful back molars. When I reflected on it, he had all the other symptoms of teething—fever, irritability, lack of appetite— but I hadn’t put them together. By hitting his head, screaming in pain, pressing his cheek against mine, and grabbing the ice cream out of the freezer at mealtime, he had been trying to tell me his mouth hurt.

It was a revelation, and as soon as I got off the phone with my parents, I grabbed Liam’s YES/NO board and asked him “Does your mouth hurt?” A look of relief passed over his face, and he hit “YES” several times.

Tears of relief running down my face, I hugged him, gave him some pain reliever, put numbing gel on the inside of his cheeks, and let him have a huge bowl of ice cream at dinner that night. I was thrilled we’d figured out what he was trying to tell us and that he’d no longer be in terrible pain.

Now, one week later, Liam’s meltdowns have decreased markedly thanks both to us anticipating his teething pain and helping him alleviate it and also by starting some new medication to help with anxiety. Our house is more peaceful, and Liam is more focused and back to his affectionate, cheerful self.

I know that we’ll have more challenging moments in the future, and I know that what works for my son won’t work for all other autistic kids, but I think the takeaways here can help us all, no matter what the future holds or who our children are.

So, when you feel overwhelmed by an autistic child’s behavior, reach out to the people in your life. Talk to friends, family, professionals, and seek out the writing or opinions of other autistic people. Most likely, you’ll find support, suggestions for improving a situation, and perhaps even the answer to what your child is trying to communicate. Also, always remember that behavior is communication for an autistic child. There are reasons behind meltdowns, stimming, scripting, and other seeming quirks. Listening to this behavior can make everyone happier, healthier, and make life easier for us all.

Let’s Talk Autism: An Autistic Adult and a Mom to an Autistic Child Chat

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This originally appeared at Parents.com

Kids with autism—like my son Liam, a non-speaking 7-year-old on the spectrum—benefit when their parents engage in dialogue with autistic adults. But, too often, parents and autistic adults end up at odds with each other. To sum the conflict in very, very broad strokes: parents argue that autistic adults cannot possibly understand the struggles they’re facing when raising an autistic child, and parents also feel a stranger, even one with a similar neurology, can’t possibly know what’s best for their child. On the other side, autistic adults feel marginalized, hurt, and angry about being the subject of such attacks, they rankle at being told they need to be “cured,” and they argue that they can indeed offer insights into what might be best for autistic children, even if they’ve never met them. With that in mind, I was thrilled when Lydia Wayman, an autistic writer, speaker, and advocate, reached out to me, hoping we could bridge some of the distance between adults on the spectrum and parents to autistic kids.

JP: Why do you think there’s a disconnect between parents and autistic adults?

LW: One issue is that we seem to forget that we all have the same goal—happy kids who grow up to be fulfilled adults—but we approach the way to get there differently. Autistic adults feel like the typical parent just can’t understand what it’s like to grow up on the spectrum, and the parents feel like these strangers can’t possibly know the child like the parent does.

JP: Yes, and I think the distance also comes from the fear-mongering and the rhetoric of cure and cause. Also, many parents truly think they’re doing the best for their kids by getting all the recommended therapies—and it’s a blow to them when autistic adults challenge the notion that things like ABA might not be the best answer.

JP: How we can bridge that gap?

LW: We all have to realize that no one is going to give new ideas half a chance if the person representing them is screaming and name-calling. Instead, we need to form real relationships and move those tough conversations from the indelible Internet forum to sofas or more personal emails and messages.

JP: I agree. Real conversations—like this one—are how we bridge the gap. Also, by asking you to share your advice and experiences, I’m opening the doors for me to better parent Liam, and I’m (hopefully) validating your experiences.

LW: Absolutely! And I have found good friends in the parents of autistic kids.

JP: What are some things your parents did that helped you as you were growing up?

LW: I don’t think they went into parenting me with any ideas about how to parent. They went into it as, ‘Oh, hey, this is our kid, let’s get to know her and find out who she is and what she needs.’ I’ve always had really intense sensory issues the full-blown ‘meltdown in aisle 7’ kind of stuff. I ate about 10 foods through most of my childhood, and at some point they were basically told to starve me out. That never would’ve worked, and thank goodness, they knew that. My mom never said, ‘But all the other little girls…’ because I wasn’t other little girls.

JP: Do you have any other suggestions to help parents get through tough times?

LW: Just because something doesn’t make sense or seems wrong or contradictory, it might not be. I say words that contradict something I already said, and then I don’t have the language to explain how both things are true. Some kids will use scripted language that seems completely random—it’s not! Sensory issues also may not be obvious—I love the mall, but I hate one department store because the light hits the tiles so glaringly it hurts. A lot of times, it may not be easy for the parent to understand the problem, but for the kid, absent the understanding, validation goes a long way.

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Lydia Wayman (left) and Jamie Pacton (right)

LW: Is it hard to see us as the adults your kids will become?

JP: Absolutely not. It’s wonderful to have adults who can help me understand my child better. That said, I might have answered that question differently in the first year after Liam’s diagnosis. Then, I was reading books about recovery and desperate to do everything I could to fix him. Because that was the only trajectory I knew.

Eventually, books like Ido in Autismland and Emma Zurcher-Long’s writing shifted my views. I saw that there was a community Liam could join, and that was a beautiful thing.

LW: If you read my earliest writing, I was looking for treatments, too, and I’ve seen many parents and autistic adults whose perspectives really change with time. I think we have to respect that it’s a journey.

LW: What do you wish society understood about Liam?

JP: I want people to see his joy and understand his struggles. I want the world to know that he is smart, and that he understands how to be gentle and kind and engaged. But that not being able to communicate is awful and it makes him frustrated.

LW: For Liam, it sounds like people don’t realize how much he understands. For me, I can talk ’til I’m blue about what I know, but it took a long time and a lot of typing for my family to realize how much I know of the complexities of people around me. I really do get it.

LW: When you’re having a hard time understanding your son or when something is hard for him, what do you need most from autistic adults?

JP: I’m pretty good on the larger sweep of autism, neurodiversity, and acceptance, but I need lots of help with daily parenting strategies. And you and other autistic adults get it. You may not know Liam, but you understand some of his challenges.

LW: That’s so awesome that it’s helpful, because that’s what my autistic advocate pals and I love to do more than anything else! I want kids on the spectrum to grow up feeling like they’re an important member of their own families and the larger community. To feel like you’re a part of something, like your voice matters and you’re known and accepted—that’s the best thing for all of us!