‘Not a broken way of being’: BYU research makes new strides in improving autism diagnoses

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PROVO, Utah (ABC4) – Award-winning research conducted at Brigham Youg University, (BYU), in Provo, Utah is making strides in improving autism diagnoses. 

Generally, healthcare providers can detect the early signs of autism in toddlers. According to research conducted by BYU, in the United States, the typical child with autism doesn’t receive a diagnosis until they are around 4 and a half years old. 

Before a child is formally diagnosed with autism they will see an average of four or five professionals during their family’s search for answers and even then some are never diagnosed, the BYU study shares. Children who aren’t diagnosed can miss out on opportunities or on pivotal times for intervention. 

The BYU study was conducted by Emily Anderberg and Mikle South, Professor of Psychology and Neuroscience at BYU, and Co-Director of the Autism Connect group.

South tells ABC4 he has been working with children and families affected by autism for more than 25 years. “It is our goal to help families to understand autism in order to help their children maximize their abilities and navigate areas of difficulty,” South shares. 

He says young children’s brains grow at the fastest rate they ever will when they are young. “The young brain learns what is important to attend to and builds stronger connections for those things, while actually pruning away connections for things that seem less important,” South says. 

Autism can be associated with many helpful skills, like the ability to attend to details, to think outside the box, and to follow rules. South says learning to apply those skills to solving problems is essential. “At the same time, children with autism may have difficulty understanding how others think and feel; and those without autism may have difficulty understanding the autistic child. So learning to mesh these different communication styles together can have positive long-term benefits.”

BYU professor Terisa Gabrielsen and colleagues from other institutions examined the effectiveness of the Modified Checklist for Autism in Toddlers, M-CHAT, the standard autism screening survey completed by parents of toddlers at well-child visits.

According to the BYU study, providers administer the M-CHAT inconsistently, based on records of 36,223 Utah children at 20 clinics. While 73% of the children had been screened for autism at least once, only 54% had been screened at both the 18- and 24-month check-ups, as recommended by the American Academy of Pediatrics.

“We get much more accurate results when we screen twice,” said Gabrielsen in the BYU study.  Of children who were screened just once and eventually went on to receive an autism diagnosis, 72% had a false negative result; among those who were screened twice, the number of false negatives dropped to 59%.

According to the study, numbers show the M-CHAT is not foolproof even when given correctly. 

After a formal determination is made, providers still have to share with parents the news of their child’s diagnosis. The study says how providers tell these parents can profoundly shape them and their preparedness to act. “One important point the study makes is that the clinician needs to gauge the needs of the family and focus on what the family needs most. Some families are looking mostly for information,” South shares. “Others may need more emotional support at the moment and information can come later.” 

South says families are all looking for the best way to support their children in the future. Learning to provide what they are looking for most at the moment will prepare them for what they need to do later. “It’s important to have a positive experience to provide a foundation of hope for the future. Families need a little of both emotion and information so finding the right balance is most important.” 

Families who experience feelings of being dismissed, or that their concerns aren’t taken seriously, may experience additional feelings of helplessness, which takes away their ability to advocate for their child. “All families want to know how to support and help their children best, so working with doctors and other health professionals should feel like a collaborative process where everyone is working together on behalf of the child,” South says.

“We want to emphasize autism as a different way of being, not a broken way of being,” South shared in the study. 

The study also discussed how women with undiagnosed autism experience unique mental health challenges. 

For those whose autism isn’t identified in childhood, which is more common for girls, challenges can be especially intense, the study states. 

“Of the 58 women in the study, who all had high levels of autistic traits, the majority reported frequently masking autistic characteristics. Troublingly, the majority also reported significant psychological distress—including depression (62%), stress (66%), and anxiety (67%)—and 62% reported having past or present thoughts of suicide. More than half of the women additionally described difficulty in everyday functioning, such as maintaining friendships and successfully completing work tasks,” the study states. 

Professor South says it is common for girls to have later autism diagnoses than boys because girls are different than boys in many ways. The criteria for diagnosing autism were primarily developed around boys, he adds. 

“One key difference may be that girls are socialized to be more interactive so that even when it’s uncomfortable girls may expend more effort to please others, even “camouflaging” or masking their autism preferences in order to try to fit in. Girls may be more aware of others’ expectations and feel pressure to meet them. Unfortunately, our research and others finds that more camouflaging is associated with more mental health distress including anxiety, depression, and risk for suicide,” South shares. 

The results of the study are consistent with those of other studies that show elevated rates of both camouflaging and death by suicide in autistic girls and women. 

“One important aspect of our research is that we are listening to what girls and women tell us about themselves, rather than trying to impose our pre-set notions and expectations,” South shares with ABC4.

He says women tell them about their friendships and families, their worries, their experience in school and work and society. He says he is “trying to tell their stories.”

“We believe that raising awareness of these stories will help others to see and understand the struggles of many girls and women affected by autism.” 

His message to parents who feel their child had a late diagnosis is there is no going back to the past. “Start where you are at,” he shared. 

He advises parents of older children and teens to “look out for bullying by others, and mental health difficulties such as anxiety and depression. 

“More acceptance of neurodiversity will benefit everyone in society and may also lead to a decrease in feelings of rejection and suicidal thinking for autistic individuals,” South says.

If you or someone you know needs help, there’s the 24/7 National Suicide Prevention Lifeline at 1-800-273-8255. For more information, visit utahsuicideprevention.org.

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