Closing the Gap in Autism Care for Girls at Masonic Institute for the Developing Brain

Autism Care for Girls

(Minneapolis, MN) — August 9th, 2022 —  High school senior McKenzie Saman showed many early signs of autism spectrum disorders (ASD) but wasn’t diagnosed until she was 8. When she went in for a formal evaluation with her mom, Denise, they were told that signs of autism in young girls often go undetected by adults.

Autism symptoms can look different based on sex, according to M Health Fairview Psychologist Casey Burrows, PhD, LP. Researchers and clinicians have long thought that boys are more likely to have autism, a belief that may have led to many late or missed diagnoses in girls. Boys are four times more likely to be diagnosed with autism than girls in the U.S. Girls were also diagnosed almost a year later than boys on average, according to the 2016 National Survey of Children’s Health.

Burrows and her colleagues at the Masonic Institute for the Developing Brain (MIDB) are working to change that. A new study led by Burrows and published in Biological Psychiatry this summer suggests girls may be just as likely to have autism-related concerns – and that changing how we assess autism symptoms can help every child get the support they need at an early age.

Impacts of sex bias

The study set out to avoid some of the common sex biases affecting autism diagnosis. Past research has shown that girls are less likely to be brought in for formal evaluation because of the belief that autism is more prevalent in boys. Family members, teachers, pediatricians, and other caregivers may be less likely to think of autism when considering a behavioral concern in young girls. The new study followed younger siblings of autistic children starting when they were 6 months of age and recruited roughly equal numbers of boys and girls.

Autism can also look different based on sex – and a number of other factors. As a child, McKenzie could communicate well, but she had other behaviors that were potential indicators of autism. She collected everything from gum wrappers to pencil lead, preferred to be in completely dark rooms, and didn’t cry in response to other children crying.

“In general, girls tend to show fewer restricted and repetitive behaviors,” said Burrows. “We found we might have to weigh certain symptoms differently both by sex and over time in order to get more accurate diagnoses.”

Evaluating children over time could also help reduce the current sex bias in autism diagnosis, according to the study.

Burrows and her team met with children in the study four times from the age of 6 months to 5 years. They used data-driven methods to correct for sex-related measurement bias in assessment of autism symptoms and identified distinct groupings based on trajectories of behavior from 6 months to 5 years. Their results showed that one-third of the boys and one-third of the girls showed growing social concerns over time.

“Our research shows that some children who could be on the cusp of an autism diagnosis may need repeated assessment,” said Burrows. “There are also some kids who might not meet full diagnostic criteria for autism but still have impairments and need support. In our study, this was more common in girls.”

Applying research to improve diagnosis, care

As a clinician at MIDB, Burrows and her colleagues are looking at ways to translate these findings into improved resources and clinical care for girls with behavioral health concerns.

“We’re trying to think about how we can encourage systems to be be less dependent on a diagnostic outcome,” said Burrows. “For example, we’re looking at children who have been identified with some autism concerns but haven’t received a formal diagnosis. Our team is also starting an interventional trial working with children at an even younger age, before we would make an autism diagnosis, to see if we can positively affect their development earlier in life.”

In addition to studying, developing, and implementing new therapies, MIDB includes advocates from the University of Minnesota’s Institute on Community Integration. These advocates work side-by-side with researchers and M Health Fairview clinicians, using new discoveries to inform advocacy work.

‘Learning who she could become’

McKenzie and Denise are thankful they went in for testing when they did. McKenzie received her diagnosis before starting first grade at a new school and was able to start interventions at a relatively early age. This can be critical in helping people with autism learn to navigate social situations and cope with sensory triggers. Multidisciplinary care has also helped McKenzie access the support she needs for anxiety, which often co-occurs with autism.

“She went from being unsure who she was to learning who she could become,” said Denise. “Today, she’s ‘Miss Bubbly.’ She’s this beautiful, carefree spirit. She’s happy; she loves who she is.”

McKenzie enjoys working at a bakery, making art, and spending time with friends.

“Now, autism is just a thing I have. There’s not much to think about,” she said. “It’s better now because more people are aware of autism. If I hadn’t gotten the diagnosis when I did, I would’ve probably just been labeled as a ‘troubled kid.’”

Burrows encourages families who notice unusual social behaviors in their child to talk to their pediatrician and get connected to resources like Autism Navigator, which can help with early identification and intervention. It’s also important for families to understand that autism could be just as likely in a young girl as a young boy, Burrows said.

“If a child shows even some mild language delays, difficulties or inconsistencies with eye contact, tends to prefer playing on their own, or has repetitive behaviors, it’s always worth a visit or conversation with a care provider,” said Burrows. “The sooner we can identify what a child needs, the sooner we can start offering those supports.”

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