Discover SPARK
An Autism Diagnosis in Middle Age Answers Decades of Questions
Marina Sarris
Date Published: December 12, 2023
School work was easy for LaVell Juricich, who was so bright she skipped the sixth grade. But other things were challenging ─ like making friends, being organized, or tolerating everyday noises, lights, smells, and textures. She could not leave her house if the seams on her socks didn’t feel right.
Juricich tried to be something other than the “weird kid” at school, but she was on her own. She was born in the 1960s, decades before pediatricians began routinely screening children for autism and the public knew what it was. She tried to ignore the constant assault from her senses, along with the bullying at school.
At 17, she arrived at a college in Minnesota hoping for a fresh start. She had a plan: she would pretend to be bubbly and outgoing so she would be invited to join a sorority. She told herself, “Who I am, no one seems to like. So I will be like these people I don’t like.” And it worked: she got into the sorority and found social acceptance.
But “fitting in” required more than acting cheerful. It included a set of skills, such as flexibility, planning, and time management, which eluded her no matter how high she scored on standardized tests. After four years studying biology and chemistry, she left without a diploma.
She would have to wait almost 40 years before she would learn that autism and attention-deficit/hyperactivity disorder caused her difficulties. In the meantime, she did what many people with undiagnosed autism did: she tried desperately to get on the path that everyone else seemed to be following.
“I’ve spent my whole life trying to figure my whole life out,” she says.
Adulthood With Undiagnosed Autism
After college, she landed one job after another, only to be fired a few months later. Supervisors told her she was not a “good fit” for their office. “I struggled with being on time, and I struggled with being what they wanted,” she says.
She did not have a wide safety net of friends and family to help. An only child, she lost both of her parents within less than a year, when she was just 21.
Through force of will, she gradually learned the skills she needed to succeed at work, especially after she became an emergency medical technician in her 30s. She got a job registering patients in the emergency room, where she thrived as an employee.
But it came at a price: she was exhausted and overwhelmed by pretending to be more social than she was, and by remembering how far to stand from someone, what she should say, whether her tone of voice was right. The stress led to depression, anxiety, and physical exhaustion, she says. “I would go to work and come home and do as little as possible. I used everything I had to get through the day. I felt like I was lacking.” Fortunately, her husband, whom she married in her 30s, was accepting and supportive.
By her 50s, she had almost given up looking for the key to making life easier for herself. “If someone had told me to stand in a ditch and swing a chicken over my head, and that would help me, I probably would have done it,” she jokes.
While recovering from surgery and then COVID a few years ago, she began watching short videos on social media about autism. Could this explain why she was different?
She had long suspected she had problems with attention, which she knew could be treated with medication. If she saw a professional to be evaluated for ADHD, should she also be assessed for autism? Although an autism diagnosis probably would not change anything for her medically, she decided, she wanted to know. Her health insurance covered the evaluation.
A Double Diagnosis, A New Path
Just a year ago, at the age of 58, Juricich was formally diagnosed with both ADHD and autism. The news brought validation. “It just felt very authentic to have a medical expert say that ‘everything that you thought you are, is correct,'” she recalls.
Many things that had not made sense now did. Her strong reaction to her senses of touch, sound, and smell, for example, as well as problems with organization, are common in autism. Many autistic people have ADHD, too.
And what she had been doing since college had a name: camouflaging or masking. Anyone may camouflage from time to time ─ by acting happy to see someone who annoys them or pretending to be interested in a dull story.
But for people on the spectrum, camouflaging involves hiding their autism traits in ways that can be stressful or physically uncomfortable. Some autistic people report that they force themselves to make eye contact and small talk. Others suppress an urge to rock or flap their hands, a type of repetitive behavior.
Some studies show that many people on the spectrum, particularly women, camouflage in social situations, and that time spent masking can be harmful to mental health.1
“I think about how much of my life was wasted on masking and not being who I am, and not really knowing who I am,” Juricich says.
Although her jobs involved a certain amount of masking, she credits her work in the emergency room with introducing her to coworkers who appreciated her differences. Since her diagnosis, she has spread the word among her friends about ADHD and autism, two conditions that were diagnosed less often in women of her generation than they are in girls today.
“If I had known and I had gotten support when I was younger, things would have been so much easier,” she says. Like other adults diagnosed in mid-life, she missed out on the school programs and accommodations that people diagnosed as children and teenagers usually receive.
Finding SPARK
Soon after her diagnosis, her husband told her he had heard on the radio about an Autism Society of Minnesota walk near their home.
They went together. Juricich saw tables with resources geared to children, such as information on schools, therapies, and fidget toys. She was drawn to one table with a sign for SPARK, the largest study of autism. There, someone from the University of Minnesota, Twin Cities, a clinical site for SPARK, explained that children and adults can join and submit saliva samples for genetic analysis by SPARK. The only requirement, she was told, is a professional diagnosis of autism.
And Juricich had just met that requirement. Maybe it was a sign that she should join, she decided.
SPARK’s mission overlaps with her own, she says. “I want autistic people to be able to be who they are and live life to the fullest, and not hide who they are.”
“Being in SPARK is one of the best experiences of my life. One of the first things I did was send in my DNA sample. I would like to see if there’s a genetic component to autism. The science part of my mind wonders how amazing it would be if they could track down the genetic markers of autism. If they could test infants, and give them the support they need immediately, how amazing it would be for that person. They wouldn’t have to suffer from not knowing that they have autism.”
And wouldn’t it be great, she asks, if autistic people could spend more time using their unique brains to solve problems, rather than hiding who they are?
“SPARK is making the world a better place for people like me,” she says.
References
- Bradley L. et al. Autism Adulthood 3, 320-329 (2021) PubMed