A story of an autism diagnosis in adulthood

Diagnosed at 30

A Woman’s Journey With Autism

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 likely would never label her as autistic.

But she is.

“I’ve always known that I was different, even from when I was little,” Millis Jalowiec says, “and a lot of my struggles were more internal and misunderstood.”

She 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 Millis Jalowiec, it was in 2020 after 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.”

It all made sense, she says. The 15 years of therapy, multiple diagnoses and coping mechanisms, but never much improvement.

Milestones Autism Resources Co-founder and Executive Director Ilana Hoffer Skoff says that 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 Millis Jalowiec, 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 Millis Jalowiec says that is another stereotype that ultimately makes getting diagnosed more difficult for women.

“The adult female presentation can look very, very different. I am very lucky that I did receive my diagnosis,” she says. “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.”

Carly Millis Jalowiec (pictured) shares her autism diagnosis in adulthood.

Milestones connected Millis Jalowiec 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,” she says.

Hoffer Skoff says that 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.

Millis Jalowiec 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, 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,” she 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.”

The Milestones Autism Planning Tool is truly your online guide for life. It is a one-stop, easy to navigate resource to help you plan and prioritize, and can be customized to any age, ability and interest. Check it out at milestones.org/map.

The Need for Job Training, Life Skills — Day Programs May Help

LOCAL CENTERS HAVE PROGRAMS AVAILABLE FOR ALL STAGES OF LIFE

By Shana O’Malley-Smith Photos Courtesy of the Help Foundation

There are specialized centers throughout Northeast Ohio that offer adult day programs, where individuals with intellectual and developmental disabilities can go on a daily basis and participate in meaningful activities, socialize, learn life and job skills, go on field trips and be active members of their community.

When the COVID-19 pandemic arose in early 2020, adult day centers were forced to close. More than two years later, individuals are slowly returning and centers are welcoming them with open arms and regularly scheduled programs.

“A lot of individuals, especially coming out of COVID, just wanted to get out of the house and get away from mom and dad and have their own friends and be able to re-engage in that way,” says Allison Briskey, chief day services officer for the Help Foundation, a provider for individuals in and around Summit and Cuyahoga counties with locations in Euclid, Northfield and Lakewood.

Adult day programs can provide a meaningful place for those with developmental disabilities who might otherwise be at home with limited opportunities.

“This gets them into a routine and a structure which I think for a lot of individuals is really important and they do better with that structure and that routine if it’s consistent,” says Heather Campbell-Wilson, day program director at The Blick Center.

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Day programs provide daily activities and a sense of routine for young adults who are transitioning out of high school.

HELP BEYOND HIGH SCHOOL

Day programs are available for all stages of life, whether the individual has just graduated high school or is a senior citizen, Briskey says.

“We provide adult day services to individuals who are just transitioning out of high school, so between the ages of 18-22,” she explains. “They’re just coming out of high school and not sure about adult day services, mom and dad are just learning about all of that, and it’s a good place to get your feet wet, get into a routine similar to what they were experiencing in school.”

Briskey says those individuals may want to take advantage of vocational training or learn long-term life skills such as how to use public transportation or be able to pay for something at the grocery store by themselves.

“We try to give them as much access to their community as possible so when they are home, they’re able to transition the skills that they’ve learned with us, with their families or residential providers,” she says. Help Foundation also provides service to individuals who no longer want to work or are retired but still need a safe, engaging place to go.

No matter what age or stage of life they are in, every person served has an individual support plan (ISP), which outlines everything the center needs to know about the individual, as well as the individual’s interests and goals.

“Some individuals’ outcomes may be to become more comfortable in their community, or they are looking to develop cooking skills,” she explains. “It truly is person-centered when it comes to planning their ISP. We use the ISP (to determine how we) deliver our services based on their interests and outcomes.”

WORK ON SKILLS AND HAVE FUN

Places such as the The Blick Center in Akron provide services like day programs for those with special needs. For example, daily activities include going on community outings to places like a bowling alley, movie theater or a park. They also can participate in music groups, games and art.

Campbell-Wilson says job training has become a large part of adult day programs over the years.

“We offer vocational habilitation, and that’s where individuals can work on work skills if their interest or desire is to work in some capacity,” she says.

Individuals can learn and engage in several different jobs. Occupational therapists also are on site and can help make adaptations for any job so individuals are able to do them.

“We have a shredding team for Blick Center so we don’t hire anyone to do our shredding, we do it all in house and we teach our individuals to do it and we pay them minimum wage,” she says. “We do community recycling projects, we do volunteer projects, so a wide array of different vocational activities.”

Fieldstone Farm, a therapeutic riding center in Chagrin Falls, helps people of all ages and abilities achieve their personal goals and find healing through horse therapy.

“We craft our programs to meet the individual expectations of those who come in, so one of the first things we do when they come in is hand a goal sheet to their caregiver or aid or to the participant themselves and ask ‘What is it that you want to get out of it?’” says Aviva Vincent, director of program quality at Fieldstone Farm. “It could be horsemanship skills, leadership, balance, fine motor skills, gross motor skills — there’s a huge range we can get out of it.”

Fieldstone Farm offers individual programs and works with adult day programs in the area to provide therapy.

“Participants can get a different type of programming by being with us, by carriage driving or doing ground-based programming learning about the horses for an hour. They’ll do that for two hours every week for about eight weeks.”

Vincent says it’s always remarkable to see what individuals can accomplish.

“We have people who can get in a carriage and control a thousandpound animal to walk and to trot and to go out on trails,” she says. “These are individuals who are not in a place of autonomy in any other aspect of their life, yet they come here and control a thousand-pound animal. That’s amazing, and they know it. Their parents, caregiver or aid, or whoever is with them is cheering them on, or their group is cheering them on and it’s just wonderful.”

Through day programs, individuals can go on field trips, learn to use public transportation and become active members of their community.