Diagnosed at 30: An autistic woman's journey
Westlake resident Carly Millis Jalowiec looks and acts like your typical 30-something. With long blond hair and big eyes, she is both engaged and engaging as she talks a mile a minute, smiling and laughing. The average person would likely never label her as autistic. But she is.
“I’ve always known that I was different, even from when I was little,” Carly says, “and a lot of my struggles were more internal and misunderstood.”
Carly is part of a rapidly-growing population of adults seeking an autism diagnosis. The interest is often spurred after a diagnosed family member, or increased awareness of the signs of autism.
For Carly, it was in 2020, and she had just celebrated her 30th birthday.
“I was looking up autism for something else and suddenly there I was, in all the articles and the books. And I thought, this explains everything.”
Carly says it all made sense. The 15 years of therapy, multiple diagnoses and coping mechanisms, but never much improvement. She attempted college three separate times, but never graduated. She bounced from job to job, working as a theater technician, a real estate agent, and a veterinary assistant, just to name a few. She thrived at work, but would ultimately get burned out and resign. All things that, until this point, she had attributed to her mental illness.
That’s when Carly turned to Milestones Autism Resources for guidance. Milestones, based in Warrensville Heights, connected her with the only available resource at the time for adults seeking an autism diagnosis in the Cleveland area.
“They had literally one name for me, which is a testament to the lack of providers and support that exists for recognizing adult autism,” Carly explains.
Milestones co-founder and Executive Director, Ilana Hoffer Skoff, says with limited experts in adult diagnosis, it’s not uncommon for adults to self-diagnose before they’re able to get a formal diagnosis.
“I think that for autism, it’s something that affects every person differently,” Hoffer Skoff explains. “You may have been struggling with things but didn’t have a name or a label for it.”
For Carly, getting the official diagnosis was life changing.
“There’s no relief like realizing you aren’t a mistake, you’re just built a little different, and so that was huge for me.”
At the same time, she admits, there was something bittersweet about the experience.
“There’s definitely some sadness and resentment of realizing that I lived 30 years without help and support I might have been able to get.”
Autism is a developmental disability that is most commonly diagnosed in children. It’s often associated with differences in communication and social skills. But Carly says that is another stereotype that ultimately makes getting diagnosed more difficult for women.
Carly met her husband, Ethan, online and got married at 25. They own a home together. She has no trouble living independently, and has lots of friends. She realizes she doesn’t necessarily fit the perceived “mold” of autism.
“The adult female presentation can look very, very different. I am very lucky that I did receive my diagnosis. I’m in support groups with other women who have completely given up on that process because they’re dismissed as, ‘Oh you have friends, oh you make eye contact.’ There are all these [misconceptions] that we have not learned to recognize are outdated,” she says.
Hoffer Skoff says, regardless of the age of diagnosis, it is crucial for autistic adults to continue to receive support. That was one of the ideas behind the launch of the new online Milestones Autism Planning (MAP) Tool, in honor of the organization’s 20th anniversary.
Carly now works on the Milestones team, as the organization’s education assistant. She helps to plan the annual conference, and serves as an autistic self advocate.
Since her diagnosis, Carly's husband and father have both gone on to receive their own autism diagnoses, with help and support from Carly. And that’s what she loves – helping others who are walking the same path.
“I’m super excited to see these conversations and transformations, to be able to help girls that are like me, now getting the support a lot earlier,” Carly says. “Hopefully through the work we do both at Milestones and in greater communities, we can expand that to better represent the autistic adult population.”
To learn more about Milestones Autism Resources, visit milestones.org.
Autumn Ziemba McKenzie
Autumn Ziemba McKenzie brings more than 20 years of journalism and media relations experience to the team at Milestones Autism Resources, as the Community Relations Manager. She has won multiple regional Emmy and Associated Press awards for her work in television reporting and anchoring across the state of Ohio. Most recently, she spent 12 years at Fox 8 News in Cleveland. Autumn is the proud mom of two kids: an 11-year old daughter, and a 7-year-old autistic son who is also a leukemia survivor. It was her son's diagnoses in 2017 that spawned her advocacy for children with special and medical needs. Autumn and her husband, Mark, received the Milestones Community Leader award in 2021 for their work to increase autism education, awareness, and the Milestones mission. In addition to her work at Milestones, Autumn is very active with the Leukemia & Lymphoma Society and was a candidate for the organization’s 2022 Woman of the Year. She and her husband also founded and run the Operation SiFi holiday toy drive for patients at Cleveland Clinic Children’s Hospital, where they have been patient ambassadors. Autumn is a Hinckley native (yes, the home of the buzzards!) and graduate of Highland High School. She received her degree in journalism from Ohio University. She is a storyteller at heart, and is honored to highlight the unique stories of autistic individuals and those who love and support them.