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Personal experiences leads Fulton family to raise Voices for Autism

Stacey Stirmer, left, is the founder of Voices for Autism, a nonprofit that raises money for autism research. Here, she and her 22 year old son Jake, who has autism, hold the organization's new banner.
Stacey Stirmer, left, is the founder of Voices for Autism, a nonprofit that raises money for autism research. Here, she and her 22 year old son Jake, who has autism, hold the organization's new banner. (Barbara Haddock Taylor / Baltimore Sun)

A longtime volunteer and stay-at-home mother of three, Stacey Stirmer has always been active in the community.

Yet she and her business executive husband, Lloyd, who have an adult son with autism and epilepsy, recently decided to add yet another layer of responsibility to their lives: In May, the Fulton couple started a nonprofit charitable foundation named Voices for Autism.

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The Stirmers' organization will hold its first fundraiser Sept. 24 at the Bethesda Blues & Jazz Supper Club. All proceeds from the dinner, concert and silent auction will be donated to Autism Speaks, a national advocacy organization based in New York.

The couple decided to take action in March when they were struck by the observation that autism research is underfunded.

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"People have good intentions, but there's just not enough research being funded or support available for these individuals and their families — not just in the county, but across the country and around the world," Stacey Stirmer said.

"We decided that a lot more needs to be done for people with autism, especially when they become adults," she said. Two months later, the nonprofit was born.

Autism spectrum disorder is a developmental disability caused by differences in how the brain functions, and it affects one in 68 children in the U.S., according to the federal Centers for Disease Control and Prevention. A chart on the CDC website shows the prevalence in 2000 was one in 150 kids.

Autism research was allocated just over 0.5 percent of the total 2012 budget of the National Institutes of Health, according to the website of Autism Speaks, which has a chapter office in Washington. Autism affects more than 3 million people in the U.S. and tens of millions worldwide, the website states.

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Those statistics — combined with eligibility changes that accompanied their son Jake's 21st birthday — spurred the couple to strike out on their own to raise funds, Stirmer said.

She has sent out 4,000 emails seeking support for the nonprofit, and has obtained more than 65 sponsors and monetary contributions, and more than 100 donations of auction items, ranging from a week in Aspen to VIP tickets to a taping of the TV talk show "Ellen."

"It's been a bit overwhelming, but it's been worth it," Stirmer said.

The wheels for creating an autism foundation were set in motion over a year ago.

In May 2015, Jake Stirmer turned 21 and became ineligible for certain government benefits offered to disabled youths. Since then the Stirmers said have been dealing with a challenge faced by many parents: how to help a disabled child who has "aged out of the system."

After graduating from Atholton High School last year, Jake Stirmer enrolled in an adult day program in Columbia, in which clients receive assistance in finding employment and get out into the community on a daily basis.

Just last week, Stacey Stirmer received an email from Autism Speaks noting that 50,000 people with autism enter adulthood every year, but that a third of them never get a job or continue education after high school.

"It's definitely a challenge to raise a special-needs individual, but this new foundation will give us more control over how the money we raise is spent," she said.

Judy Terle, the mother of two adult daughters with autism who attend the same day program as Jake Stirmer, calls Stacey Stirmer "a dynamo."

"Stacey is a very motivated person who wants her child and all individuals to have the best quality of life possible," said the Columbia resident and substitute teacher. "As a mother, she recognizes the unique qualities and strengths of individuals with autism, and she has a great passion for raising awareness."

Both women know that jobs for people with autism aren't easy to come by, Terle said.

For the Stirmers, the foundation is a new outlet for helping their child, and others like him, lead meaningful lives, Stacey Stirmer said.

"Jake is like a toddler, and I can't be away from him for too long," she said of her son, who is on the low-functioning end of the autism spectrum and was diagnosed with epilepsy at age 17.

"We are trying to raise our son, who is literally a child for life, to be an independent adult," she said. "The government wants to protect individual rights, but having these rights is actually detrimental to him in some ways."

While her son's adult status comes with its own set of stressors, Stirmer has set her sights not only on increasing research funding for autism, but on raising awareness and acceptance of individuals with the disorder.

"Those goals are equally important to me," she said. "Money is only half of it."

Stirmer said her family's journey began when a physician grew concerned about Jake not attempting to walk at 15 months, and he mentioned the possibility of autism. At first, Stirmer attributed her son's slow progress in reaching developmental milestones to being a third child who was getting more fragmented attention from her than his older siblings received. But that perception soon changed.

"He was using baby words, but then he stopped saying them, and that was as tremendous a red flag as you could have," she said.

Stirmer said her son's communication skills remain limited, and that's a weighty concern.

"I'm constantly wondering, 'Is he happy? Is he safe?'" she said. "He can't tell you what's going on with him, and that makes him the perfect victim."

Shel Kelley said there are no barriers too high for Stacey Stirmer, who "really wants Jake to reach for the stars."

Kelley, a tax administrator and River Hill resident, doesn't have children with the disorder, but she knows the Stirmers and others who do. To support them, she volunteers on the board of Course for the Cause, an annual golf fundraiser for autism research founded in 2008 in Howard County.

Stirmer, who met Kelley when they served together on the board, said that initial introduction to fundraising was the inspiration for Voices for Autism.

"Almost everyone knows someone with autism," she said. "This disorder strikes a chord with a lot of people, and we are really hoping to help change lives."

If you go

Voices for Autism will hold a fundraiser from 7 p.m. to 11 p.m. Sept. 24 at the Bethesda Blues & Jazz Supper Club, 7719 Wisconsin Ave., Bethesda. The B Street Band will perform a tribute to Bruce Springsteen. Information or to purchase tickets for $125: wearevoicesforautism.org.

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