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‘Sound of Us’ tells stories Northeast Ohioans want to tell — in their own voices.

Autism doesn't just affect young white men, says Cleveland area woman

Nikki Montgomery of Euclid stands in her home office.
Ygal Kaufman
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Ideastream Public Media
Nikki Montgomery of Euclid began publicly acknowledging her autistic traits several years ago.

Nikki Montgomery spends a half hour each morning writing appointments in her old-fashioned paper planner.

A photograph shows Nikki Montgomery filling out her daily planner.
Ygal Kaufman
/
Ideastream Public Media
Multicolored pens, stickers and a high-end planner help Nikki Montgomery feel calmer.

This is no ordinary planner. It’s spiral bound, with a thick rainbow-colored cover, and it cost $75.

"Which is a bit much, right?" she asks with a laugh. "I think that's more than your $5 drugstore planner."

Montgomery spends time filling in her meetings with multi-colored pens and adding stickers for decoration.

"It calms me," she said. "It makes me feel like I have my life together a little bit."

She pauses, looking at the stack of supplies, and gives another big laugh.

"My planner is the bane of my existence, and also the thing I need most."

Growing up different

Montgomery attributes her need for organization and order to being on the autism spectrum.

Up until a couple years ago, she said she would have hidden behaviors like completing her planner, along with lots of other things that made her different: "Absolutely saying the wrong thing, not knowing how to filter and not knowing how to forge friendships with people."

But now, in her early 40s, she’s candid about them with family, with friends and at her job. The communications manager even changed her public profile on her company’s website to describe herself as “neurodivergent” — having differences in mental processes often associated with autism.

That it took Montgomery decades to get to reach this level of self-disclosure isn’t uncommon for anyone who’s on the spectrum. But the journey can be especially long for women and people of color.

"What I often have heard from other Black women in my age group is that they had someone who said, ‘Well, maybe you have bipolar disorder, or maybe you have something else,’" Montgomery said.

Family photos show Nikki Montgomery's sister and son, who are both disabled.
Ygal Kaufman
/
Ideastream Public Media
Having a sister (left) and a son (right) who are physically disabled helped Nikki Montgomery overcome the 'ableism' — discrimination in favor of able-bodied people — that initially prevented her from recognizing her differences.

Montgomery has encountered that kind of misdirection herself, going back to when she was a girl growing up in Nebraska. The idea that she might be on the spectrum didn't seem to be on anyone's radar, she said.

That's a common experience for Blacks kids, who even today have to make three times as many doctors’ visits as white kids to receive an autism diagnosis. And girls of any race are less likely to be diagnosed than boys because their behaviors related to autism tend not to be as obvious.

Montgomery, for example, did a lot of “scripting” in her girlhood — repeating phrases she had read in books or seen on TV — as a way of coping with social awkwardness. Lines from Anne of Green Gables were some of her favorites.

"And for a Black girl growing up in Nebraska scripting Anne of Green Gables, this is a couple of degrees of odd, right?" she said, laughing. But she used the technique to help "figure out how to fit into social circles," she said.

Extra kindness and oxygen

Now that Montgomery has a new understanding of her own brain, she feels kinder toward herself. She's more comfortable with the things that might make her seem a little different or strange in others’ eyes.

Her love of her planner is one example. Another? She loves houseplants. A lot.

Her house in Euclid is packed with them — at least 100, she said: Tall, flat-leaved snake plants perched on the mantle, devil’s ivy spilling out of tiny pots on her walls.

Nikki Montgomery sits in her home office in Euclid, Ohio.
Ygal Kaufman
Nikki Montgomery sits surrounded by plants in her home office.

As she watered them at the end of a recent workday, she reflected on her journey toward self-acceptance.

"Our world values extroverts who are out there and social," she said, tipping a watering can gingerly into a cactus pot. "And for those of us who are not, [identifying as autistic or neurodivergent] allows you to forgive yourself and say, 'I don't have to fit this. It's okay.' And then I can look back at my childhood and say, 'Oh, all of those things that were hard for me, it's also okay that I didn't fit then.'"

Her plant collection provides lots of extra oxygen in her house. But letting go of the pressure to be normal, she said, is what's really allowed her to breathe.

Justin Glanville is the deputy editor of engaged journalism at Ideastream Public Media.