SPARK Research Match Summary Report: The Health Problems of Young Autistic Adults

SPARK Research Match Summary Report: The Health Problems of Young Autistic Adults

Date Published: March 2022

This is a SPARK Research Match Summary Report. It describes results from published research using data from SPARK participants.

Study Title

Current and Lifetime Somatic Symptom Burden among Transition-Aged Autistic Young Adults

What was the study about?

Researchers wanted to find out how young autistic adults compared to the general population in their experience of 14 bodily symptoms, also called somatic symptoms. These symptoms included fatigue, sleep problems, dizziness, headache, constipation, and back, joint, or chest pain. These symptoms are the most common reasons that people see a doctor.

How was the research done?

About 290 autistic adults in SPARK completed online questionnaires about symptoms they experienced at different stages in their lives. The participants were ages 18 to 26, and 61 percent were assigned female at birth. Researchers studied young adults because they are less likely to have health problems related to aging.

What did the researchers learn?

• Autistic adults, particularly women, reported more bodily complaints than previous studies found in adults overall.
• In the previous three months, 73 percent of adults had fatigue, 69 percent had sleep problems, and 61 percent of females had menstrual problems.
• More than 50 percent of the women and 19 percent of the men reported moderate or severe symptoms. That is much higher than the overall 9 percent rate found by a 2013 study of men and women in the general population.
• Autistic women were two to four times more likely to have one of the listed symptoms than autistic men, including dizziness, chest pain, and joint pain.
• People with a greater number of symptoms, or more severe symptoms, also had higher levels of depression, anxiety, and autistic traits. In the general population, there is a link between depression and anxiety, and physical symptoms.
• Most participants said that their symptoms began when they were teenagers or adults.
  
  

What was new and innovative about the study?

Little research has been conducted on the physical symptoms of autistic young adults, other than on gastrointestinal and sleep problems. This was the first study of how often young adults experience each of 14 symptoms, and whether those problems began in childhood, the teen years, or adulthood.

What do the findings mean?

Young autistic adults reported more physical symptoms than people their age, as a whole. Most symptoms began in the teen or adult years, which is also when females began reporting many more symptoms than males.

What are participants and scientists saying?

Study participants:

• “I’m curious about the questions about physical symptoms (in particular, shortness of breath and chest pains). I have a congenital heart problem (which I wanted to note but couldn’t) and vaguely remember maybe reading about a correlation to some learning disabilities. I enjoyed taking these surveys: I hope this research is helpful!”
• “Thanks again for doing this study; it gives me a lot of hope knowing that research like this is occurring and may one day inform treatments that change the daily life and satisfaction of people on the spectrum.”

Researcher Zachary J. Williams, M.D. and Ph.D. candidate, Vanderbilt University:

“This study demonstrates that autistic young adults, especially those assigned female at birth, have much higher rates of physical symptoms than their neurotypical peers. More research is desperately needed to understand the causes of these symptoms, their effect on health care visits, and whether standard treatments for these symptoms in the general population are appropriate or effective for autistic people.”

What’s next?

Researchers plan to study changes in physical symptoms over time in autistic people. They want to learn whether sensory sensitivities, stress/burnout, and mental health problems affect the amount and severity of physical symptoms in the future, Williams says.

References

1. Williams Z.J. and K.O. Gotham Autism Res. Epub ahead of print (2022) PubMed

About SPARK Research Match

This SPARK program matches participants with research studies that they may want to join. These studies have been evaluated for scientific merit and approved by a scientific committee at SPARK. The program is free to researchers and participants.

SPARK does not endorse or conduct these studies. Participants choose if they want to take part in a particular study.