SALT LAKE CITY — For most parents, noticing the subtle symptoms of mental health issues, like depression and anxiety, in their children can be difficult. For parents of autistic children, it's almost impossible.
“What is the autism and what is depression?” asked Laura Anderson, former president of the Autism Council of Utah and mother of an autistic child. “It is just a constant guessing game and all you’re doing is trying to help your child or your young adult succeed and all of a sudden they’re in depression.”
Her son Ty Anderson, 22, has autism spectrum disorder, is non-verbal, has limited receptive skills, violent tendencies and does not engage with his surroundings.
He was diagnosed with depression in high school and Anderson said she thought he was "happy go lucky," when she said her son's psychiatrist, Deborah Bilder, told her, "I think he's going through bouts of depression."
Anderson was taken aback by the suggestion and asked for an explanation.
"Well let’s look at this," Anderson remembered Bilder telling her. "When he goes into his room, when he lays under the covers, when he won’t interact, I just figure he’s tired. She said, 'I think he’s struggling with depression.'"
Ty Anderson was treated with medication — since talk therapy doesn't work, Anderson pointed out — and his entire behavior has changed since treatment.
"I would never have known," she said. "Because his autism is all I know."
Bilder, who works for the University of Utah Neurobehavior HOME program, said this experience is common in parents of children with autism.
“Depression is a challenge to identify in adults with autism because an inherent part of autism is a difficulty and inability to talk about how someone feels or how someone thinks,” she said. “It’s that much harder to figure out in these folks who can’t talk to us about their feelings and thoughts.”
Bilder, who's worked with people with autism for 15 years, helped author new research from the University of Utah which found that over time, people with autism were at a higher risk to die from suicide compared to people without autism.
The study is the first population-based study conducted in the U.S. on the topic of autism and suicide.
"For a long time suicide ideality and suicide risk was not really thought about in autism," said Anne V. Kirby, primary author of the study and assistant professor at the U. "And in the past few years, there's started to be more conversation in researchers and families."
A Swedish study that analyzed causes of death in autism found suicide was a more common cause of death in people with autism diagnoses than those without. This study is what Kirby said sparked the idea to look at suicide and autism in the U.S.
Concerned parents in the autistic community also approached researchers about the topic, which Bilder said was another reason for the study.
“These parents are amazing in what they will do for their child," she said. "They are so frustrated that they can’t access services for their kid.”
The 20-year retrospective U.S. study took most of its data from the Utah Registry of Autism and Developmental Disabilities and suicide surveillance data collected by the Utah Office of the Medical Examiner, spanning from 1998 to 2017.
No significant difference between suicides in the autism community and suicides in those without autism was found in the first 15-year period, but in the most recent five years of the time period studied, 2013-2017, data showed those with autism had a higher risk of suicide than those without autism.
The research team found a .17 percent risk of suicide in those with autism compared to .11 percent in those without autism from 2013-2017.
"While these results suggest slightly elevated risk, the authors noted that suicide is rare and is not necessarily a concern for all individuals with an autism diagnosis," a news release on the study stated.
Women with autism had about a three times higher risk for suicide than women with no autism diagnosis, according to Kirby.
"And that's really interesting because females are much less likely to get an autism diagnosis and also much less likely than males to die from suicide and so really, you would expect that there would be very few females with autism at risk for suicide," Kirby said. "But what we found was that females who have an autism diagnosis were dying from suicide at rates closer to males both with and without autism."
According to Kirby, future studies will look at suicide attempts and suicide ideation in the autism community as well as why those with autism are at risk to die from suicide.
"Because really what we would like to do is inform services and programs that can support people who have autism so that they're not at risk for suicide," she said.
Kirby is in the process of working with autistic adults to develop future research questions and help figure out why this is a problem.
"All this study did was really point to the fact that there is a higher risk and we really don't know why," she said. "We really want to better understand that and we think one of the really important ways to do that is to actually work with autistic people who have lived experience on this."
Difficulty interacting socially with others, finding employment and higher rates of depression could all be reasons contributing to the problem, Kirby said.3 comments on this story
“I think the research is important because it’s an issue we just don’t talk about in the community," Anderson said. "You know we always try to make things optimistic and hopeful and opportunistic about all of the wonderful things individuals with autism can do and their opportunities, but we don’t address the mental health portion and the issue of suicide.”
Education will play a key role in addressing this topic, Anderson said.
“We need to be educating parents on what does depression look like for an individual on the autism spectrum," she said.