Date Published: July 18, 2023
One survey at a time, people in the SPARK autism study are changing what we know about the health of autistic adults.
Thousands of autistic adults in SPARK have contributed to studies about their mental and physical health, topics that we know comparatively little about. For decades, researchers focused on understanding autism in children. Now, with more than 20,000 adults enrolled in SPARK, researchers can more easily find people from ages 18 to 90-plus to join their studies.
That has led to new findings. For example, in a study published in 2023, adults in SPARK told researchers about the effectiveness and acceptability of different types of mental health therapy. That may not sound particularly ground-breaking until you consider that this is believed to be the first study that asked autistic adults their opinions of therapy.1
“We thought this would be a really important first step to understand, from the perspective of autistic people themselves, what the therapy experience was like for them,” says lead researcher, Micah Mazurek, Ph.D., a University of Virginia professor and clinical psychologist. The results of the SPARK study are helping Mazurek and others as they launch a clinical trial comparing cognitive behavioral therapy to mindfulness-based therapy for autistic adults.
People on the spectrum have high rates of mental health conditions, according to the A.J. Drexel Autism Institute, as well as SPARK data.
For autistic adults, finding therapists to work with them can be challenging, Mazurek says. “We’re hearing that a lot of mental health providers feel that they’re not equipped to work with autistic adults, when really they probably are. They may just need some additional support,” Mazurek says.
Autism is often diagnosed in childhood, and pediatric therapists and doctors may have more experience with autistic people than healthcare providers who only see adults.
In Mazurek’s study, adults reported that it was important for their therapists to understand autism and accept them. They also said that therapy helped with their anxiety, mood, and personal growth.
Attracting Autism Researchers Around the Globe
Mazurek and her team used the SPARK Research Match program, which invites SPARK members to join online or in-person studies led by researchers outside of SPARK.
Since 2017, researchers in the United States and abroad have used this program to find children and adults to participate in about 250 autism studies. They have already published more than 50 studies in peer-reviewed journals.
Researchers can also use SPARK data ─ anonymous information that participants have submitted about themselves ─ for studies.
Studying Mental Health of Adults Across the Spectrum
Autistic adults in SPARK have contributed to studies about mental health conditions, such as depression, anxiety, and ADHD, along with treatments. These studies have found that:
- Almost 90 percent of independent adults had been diagnosed with a mental health condition at some point in their past.1 Other researchers focused on adults who have legal guardians; they found that 67 percent of them had been diagnosed with at least one psychiatric condition.2
- The most common treatment for depression among autistic adults is medication, followed by therapy. Barriers to treatment included financial and insurance problems, access to care, and doctors’ understanding of depression in autism.3-4
- One type of repetitive thinking ─ in which a person focuses on negative thoughts without reaching a solution ─ is linked to depression in autistic adults.5 Repetitive behavior is a trait of autism.
Shining a Light on Health and Aging
Adults also contributed to Research Match studies exploring their physical health, including as they age.
One study found that adults in their teens and 20s reported more bodily complaints, such as fatigue and sleep problems, than previous studies have found in the general population. That’s especially true for young women.6 Through future study, researchers hope to learn whether stress, sensory sensitivities, and mental health conditions affect physical symptoms.
Other Research Match studies, led by psychologist Gregory L. Wallace, Ph.D., have investigated heart and blood vessel disease risks, sleep problems, and, in older autistic adults, risks for dementia and movement disorders. “Very little is known about autistic adults as they age,” one of those studies says.7
In different studies, researchers found that:
- Independent adults ages 50 to 83 were more likely to have features of parkinsonism, a group of movement disorders whose symptoms include tremors, leg stiffness, and unstable posture. Researchers do not know if these adults face a higher risk of developing Parkinson’s Disease,8 and theyplan to study this more.
- About 75 percent of independent adults had at least one risk factor for heart disease, such as high cholesterol or being overweight. Reducing sleep problems, and monitoring the health of people who use antipsychotic medicine, could reduce heart disease risks in autistic adults.9
- Almost a third of adults ages 42 to 81 reported signs of thinking and memory problems on a screening test.7
Ensuring Quality Autism Research
Before anyone is invited to participate in a Research Match study, a SPARK committee of scientists, parents, and autistic adults reviews the study for scientific merit and value to the community. “We want to make sure good research is being done ethically,” explained SPARK principal investigator, Wendy Chung, M.D., Ph.D. in a webinar about Research Match.
If a study is approved, then SPARK sends emails inviting its participants who qualify for the study, based on their age, sex, where they live, or other factors important to that particular study. A participant can decide whether to join.
Several SPARK members say they like to join studies that interest them and appreciate the gift cards that some studies send to those who take part. Researchers say they appreciate being able to reach a large number of autistic people from across the United States.
“SPARK provides access to a large group of autistic adults, particularly middle- and older-aged adults who are really, really understudied,” says Wallace, the George Washington University associate professor who led many studies of SPARK adults. “It may be harder to reach these folks if we didn’t have the SPARK registry, as well as Research Match, which allows us to connect to the participants themselves, through SPARK.”
Interested in joining SPARK? Here’s what you should know.
- Mazurek M.O. et al. Clin. Psychol. Psychother. Epub ahead of print (2023) PubMed
- Fombonne E. et al. J. Autism Dev. Disord. 50, 3679-3698 (2020) PubMed
- Zheng S. et al. Autism Epub ahead of print (2021) PubMed
- Zheng S. et al. Autism Res. Epub ahead of print (2021) PubMed
- Williams Z.J. et al. Autism 25, 2048-2063 (2021) PubMed
- Williams Z.J. and K.O. Gotham Autism Res. 15, 761-770 (2022) PubMed
- Klein C.B. et al. Autism Res. 16, 605-616 (2023) PubMed
- Geurts H.M. et al. Autism 26, 217-229 (2022) PubMed
- Bishop L. et al. Autism Res. 16, 569-579 (2023) PubMed