Adults with ASD and the parents of children on the spectrum may not always see eye to eye, but they both can benefit greatly from open conversation. Here, a mom to a young autistic boy and an adult on the spectrum sit down to bridge the gap.
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.
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.
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!
Jamie Pacton lives near Portland where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com, Facebook (Jamie Pacton), and Twitter @jamiepacton.