Parallel paths: Mother, son with autism learn to navigate world, strive to raise awarenessSubscriber Exclusive

When Robyn Kistemaker’s son, Lucas, was in preschool, his teacher recommended screening him for autism after noticing certain behaviors, such as running away from the class or tearing up paper and tossing it in the air to watch it flutter down. Lucas’ evaluation led his mother to reflect on her own tendencies, so she made an appointment for herself.

“As we were getting him tested and evaluated, my husband and I kept looking at each other and going, ‘That would make so much sense,’ ” she said. “I had sensory things, and my own habits and needs.”

Kistemaker then underwent testing and confirmed what she and her husband, David Hively, 44, had suspected. She has autism, too.

“It was actually freeing, because I had a name for why I was different in all these ways,” said Kistemaker, 42. “I just thought I was quirky or weird, and this gave it a name, and it’s helped me really relate with my son.”

Together, she and Lucas, now 11, are navigating parallel paths in a world that doesn’t always understand them. That’s why Kistemaker is working to create more awareness and acceptance of autism, which is increasingly diagnosed in children but less so among adults. She knew something more needed to be done.

Undiagnosed

Although researchers haven’t identified a specific cause of autism, they point to genetic and environmental influences. Lucas was adopted at birth, so the trait he shares with Kistemaker wasn’t inherited. His 5-year-old sister, Noelle, also adopted, doesn’t have autism. Neither does their adoptive father, Hively.

Autism’s prevalence is difficult to pin down. The Centers for Disease Control and Prevention estimates that 1 in 31 children are autistic, but little research has been conducted on autism in adults.

About 3 percent of Clark County residents, both children and adults, are autistic, and many more are likely undiagnosed, said Sara Woods, clinical psychologist at the University of Washington Autism Center Tacoma, in an email.

“It is difficult to know how many adults are autistic because many of them tend to go undiagnosed,” Woods said. “Other factors like age, gender, cultural background, socioeconomic status and the presence of co-occurring conditions affect whether someone is diagnosed.”

Autism is more than three times more common among boys than girls, according to the CDC. The disparity may be because girls’ symptoms often present in a subtle way and may not be easy to recognize, Woods said.

A 2022 study estimates about 2.21 percent or about 5 million adults in the United States, and 2.13 percent or 119,815 adults in Washington, have autism.

Woods said she thinks 2.21 percent is an underestimate, because adults aren’t often diagnosed, have subtle presentations and engage in masking their autism. With autism being underdiagnosed in certain populations, she said, it’s hard to know exact prevalence rates.

Woods said although autism is considered a neurodevelopmental disability, it carries both strengths and difficulties.

“Autism is just a different neurotype, and it’s not accurate to conceptualize it as simply a set of deficits,” Woods said. “The way it manifests is often affected by the social context, and people who are in more affirming environments tend to have better experiences.”

That also makes it more difficult to diagnose.

Few resources

Kistemaker, Hively and their children moved to Vancouver in August 2024. As pastors, the couple searched for a church where they could work together and spend more quality time with their kids. They found it in Messiah Lutheran Church.

“We met so many people and families that have just welcomed us and have been kind and have shown a lot of empathy for Lucas, especially since both of our kids are adopted,” Kistemaker said.

Things didn’t go as well when Lucas started fifth grade at Eisenhower Elementary School.

“It just started off rough. From the get-go, (there) was not a lot of understanding about what autism is, what it looks like,” Kistemaker said.

In the wider community, she noticed very few resources, such as specialized child care, fenced parks and support for families.

Kistemaker applied for a grant from the Southwestern Washington Synod Evangelical Lutheran Church in America. She received $4,300, which she plans to put toward exploring the biggest needs for Clark County residents with autism and their families.

Her congregation also pitched in $1,000 to provide child care for events that Kistemaker plans on hosting to learn about the needs in the community.

She also created Inclusion Matters, a private Facebook group, where she’s shared her family’s story and others have shared theirs as well.

Hively said some people in their congregation have gotten to know and understand their autistic family members better after observing and learning from Kistemaker and Lucas.

Kistemaker recalled a time when a grandmother in the congregation described throwing confetti in the air with her autistic grandchild, “celebrating what she first thought was weird.”

Hively said he wishes autism was more normalized, like being left-handed — different but more understood.

A variety of traits

Autistic people don’t all share one set of traits. Symptoms of autism present in different ways for different people, Woods said. They may have different styles of communicating, be more honest and direct in their communication and express passion about focused interests, she said.

They may also exhibit behaviors that puzzle those who don’t know much about autism. For example, Lucas often flaps his arms and rocks back and forth, also known as stimming, a term for self-stimulatory behavior. His mother said he’s a perfectionist who gets embarrassed when his work is corrected in front of the class. He also doesn’t like unexpected changes in routine.

Kistemaker said there were times at Eisenhower when Lucas didn’t know in advance about a change in his schedule and that would trigger a meltdown. Lucas said when that happens, he gets loud and starts crying.

“He came home every day just feeling dejected, like he didn’t fit in. The kids in class would make fun of him, and there was no attempt to educate the other students about autism and why he might do his stimming,” Kistemaker said.

One night at the dinner table, Kistemaker said Lucas asked the family what they would change in their lives if they could go back and change it.

“He told us that for him, he doesn’t wish that he was not autistic,” Kistemaker said. “He wishes he didn’t have the extreme emotional responses that come with autism, because that’s what people remember and think of when they think of him, and that’s not what he wants them to remember.”

Lucas has had a better experience since starting sixth grade at Jason Lee Middle School this fall, his mother said.

“My hope for Lucas is that he has all of the normal challenges of being a middle-schooler, and that sounds like a weird thing to ask for, but I think that’s what he wants, too,” Hively said. “He just wants to have a normal experience of life and of school.”

The quiet kid

As Kistemaker watched Lucas struggle at Eisenhower, she shut down. And in that moment, she showed Lucas what it is like for her when she gets overstimulated. Even though mother and son react in opposite ways — she gets quiet, he gets loud — they connected on a deeper level.

“I could see the relief on his face when I was using words that were like, ‘I go through that too,’ ” she said. “I get it on a deeper level, and how frustrating it is to not be able to verbalize to the world around you, what is going on in your head because there’s just too much.”

Kistemaker remembers what it was like for her when she was Lucas’ age. She took a book with her everywhere she went until she got a Walkman portable audio player. She said she’d get really upset if she didn’t have it, and her parents thought she was just being dramatic.

“Looking back now, it was my way to escape from the sensory overload, because I would get dragged to things like church bazaars, where everyone’s crowded into a little, tiny church gym … or going to loud restaurants,” she said.

Making friends in school was difficult for her. She said she would rehearse conversations in her head, and if they didn’t go that way, she’d withdraw. She thought that was normal, and everyone practiced conversations.

“I had my own little world in my head, and I was the quiet kid,” she said.

Back then, autism wasn’t much recognized or discussed. Those who were diagnosed were put in separate special education classes. Kistemaker said it was unheard of for girls to have autism.

“I became an overachiever because I was constantly seeking approval through any way I could, and schoolwork was one of the ways that I could do that,” Kistemaker said. “The homework and stuff, that was so easy for me, but I didn’t have the social aspect, which got really lonely.”

She said when people would talk about their weekend plans with friends, she “simultaneously wanted (that) and also thought it sounded dreadful.”

Her experience isn’t uncommon among those with autism. The stigma can lead to feelings of isolation and mental health problems, Woods said.

“A lot of autistic people engage in masking, and so that means that they attempt to take on neurotypical traits and present in a more neurotypical way, and they actively try to hide their autistic traits,” Woods said. “Over time, it takes a lot of work to do that, to hide the way you naturally are, to pretend to be someone else, and it takes a really strong, psychological toll on people.”

It wasn’t until Kistemaker went off to college at Wittenberg University in Springfield, Ohio, that she made friends. She joined the Kappa Delta sorority. She bonded with people over their shared love of volunteering through the sorority’s philanthropy, which was Girl Scouts.

“College let me finally find people who had similar minds like me, without knowing what it was, but it felt more comfortable,” she said.

She met Hively in seminary. Kistemaker said if she had known about her diagnosis earlier, it would’ve helped their communication. But they figured out how to make their relationship work.

The family likes to go to the farmers market and hike when it’s nice. Over the summer, they went to a sunflower festival and peach picking. Kistemaker said it’s hard for her and Lucas to do anything that is extremely loud and enclosed, like go to Sky Zone trampoline park or Kids Club Fun & Fitness.

“Small group chatting is hard for me. I don’t necessarily like public speaking or small talk, which is my job,” Kistemaker said. “And it’s been harder to make mom friends.”

She said on days when she has a lot of one-on-one conversations or is preaching, she has to take time after to be by herself to recover her energy. Noelle and Hively often pick up on that and will let her have some quiet time.

Sometimes, Noelle and Hively will go and do activities in loud and crowded places while Kistemaker and Lucas will stay home.

The other night, after a stressful day, Hively and Noelle went to the store to grab a few things to let the house be calm for about an hour.

“Everybody gets a little bit of what they need in order to thrive,” Hively said.

Kistemaker and Lucas stayed home and sat next to each other. She caught up on some work on her tablet, and he played Roblox on his tablet in silence. She said it was great and felt like the best conversation they’ve had in months.

“I think knowing it now has changed so much for me, because it takes me from being weird to ‘this is just how my brain works,’ and it’s not unusual,” Kistemaker said. “It’s just that the world is not made for people with brains like this.”