BYU researchers are working together in an attempt to understand how to better screen for an earlier autism diagnosis, how to share an autism diagnosis with parents and how women with undiagnosed autism have unique mental health challenges, recent published studies show.
The study on diagnoses was done by BYU professor Terisa Gabrielsen and colleagues with a focus on when screening is being done for autism and how an early diagnosis and treatment improve functional outcomes.
“What’s supposed to happen is you get a screen, and then if there’s some concern from the screen, then healthcare providers are supposed to follow up,” said Mikle South, a BYU professor who worked on the study. “That’s not happening as much as we would like.”
The study on sharing an autism diagnosis was written by BYU PhD student Emily Anderberg and looked at what families valued when hearing of their child’s diagnosis.
Based on focus groups and surveys, families valued providers that offered, “warmth, empathy, directness and abundant information.” While some families who may be prepared for the diagnosis might just want the most information possible, others who are not prepared need some time to process the diagnosis.
“We want to emphasize autism as a different way of being, not a broken way of being,” said South, a co-author of the paper, in a release. “Providers should discuss strategies to promote the child’s success, but let’s also talk about the positive characteristics associated with autism, such as reliability, persistence, focus, attention to detail and out-of-the-box thinking.”
The final study, done by South, looked at how women are not diagnosed with autism at as early of an age as boys, which leads to women trying to mask their autism.
“For example, girls may feel more pressure to look typical, to like look people in the eye, even when it’s uncomfortable. Girls may not look like they have autism because they can mask it on the outside, they look more typical. But on the inside, they are really working hard. They’re giving a lot of efforts to sort of do those typical social things, and what we also found is that the more energy and time people spend masking their autism, that makes their mental health worse. We see higher rates of depression and anxiety and suicidal thinking in these women who are working so hard to act not autistic.”
All of the studies are intertwined in some way, leading from an early diagnosis for those with autism, how to give word of the diagnosis to the parents and the mental health challenges that follow through life for those with autism.
“Having everybody’s different perspectives and part of our team, our statisticians and public health experts,” South said of the benefits of having a group at the university working together. “We sort of think about how to view a person with autism at every level, at an individual level, a family level, a healthcare level, a community level. Having this team helps us to see all the different places where autism interacts with society.”
As for a next step, South said a study is being conducted right now on the suicide risks of adults with autism. It is a long-term study where those with autism wear a bracelet and respond to surveys on a daily basis.
The study will be six months long and look at what is happening on a day-to-day with regards to suicidal thinking.
“I think that we’re just pushing to understand autism from the perspective of people affected by autism rather than our preexisting ideas,” South said. “So we are really trying to involve individuals and families who have autism in all aspects of our research.”