Putting together the puzzle: More adults facing autism diagnosis
New CDC report has found that not only had autism detection increased autism prevalence but also found that many adults have gone undiagnosed for much of their life. (Unpslah)
There are increasing chances that many adults today have autism spectrum disorder and may not realize it.
A recent report released by the Centers for Disease Control and Prevention shared an increase in the prevalence of autism among children. The CDC estimated that 1 out of every 36 children has autism. This is a significant increase from the 2021 estimate of 1 in 44, which was a big jump from 1 in 110 in 2006.
The prevalence of US adults diagnosed with autism is estimated at nearly 5.44 million or about 2.21% of adults in the U.S.
While the number of children estimated with autism seem to be on the rise, changes in definitions for ASD and differences in tests may have increased those numbers. It also means that many more adults in the U.S. meet the criteria of autism that did even 20 years ago.
Autism wasn’t recognized in the Diagnostic and Statistical Manual of Mental Disorders until 1980. Even then the diagnosis for autism was narrowly defined, requiring a pervasive lack of interest in people, as well as language impairments and particular fixations, all detected before a child was 30 months old.
As research has given a better understanding of autism spectrum disorder, it has shown autism isn’t a mental disability for everyone diagnosed and that it may present different among men and women.
Blair Braden a ASU professor and director for autism and brain aging laboratory, has worked with groups of adults diagnosed with autism to better understand their challenges and create new support programs.
Braden described autism diagnosis coming from two criteria: the person must have social communication challenges and the person must have a presence of restricted or repetitive behavior or interests with several ways a person can demonstrate that they meet those diagnostic criteria.
“The testing that we have now was developed for kids really, and it does a very good job of accurately diagnosing kids. So the gold standard approach is to do both and observational sessions with the person who is suspected to be autistic and then to do a interview with a caregiver or someone who is closely around during there development. But you can imagine the older a person gets the harder it is find someone who was around during there early development to speak to those years,” Braden said.
She said they instead have to rely on the person to share there early development experiences, which may or not be accurate. That means those making the diagnosis rely more on the observational approach for people in middle and older adulthood.
When it comes to help for adults, there are few options.
One of those programs Braden named aiding in this endeavor is the Program for the Education and Enrichment of Relational Skills which was developed by UCLA for adolescence and was later adapted for teens and then adults. This is now being adapted by Braden’s research for any age.
“Part of what my lab does is we have this ongoing longitudinal study where we recruit as many middle-age and older autistic adults, as many as we can find in the Valley, and have a neurotypical comparison group. And so some of these people we’ve been following for the past 8 years were seeing how things are changing for them on how aging might affect autistic adults. Memory seems to be declining faster for some autistic adults compared to neurotypical adults,” Braden said.
New research being conducted on autism has shown that for older autistic adults, Alzheimer’s may be more prevalent. Although researchers like Braden aren’t exactly sure if this is due to autism or the mental stress that comes from living in a neurotypical society.
She said autism can be genetically passed down and that a parent can pass it to their child. Which may be leading to an increase of diagnosis of children leading back to the parent.
Helping to change the stereotype
Lauren Megrew, an industrial and organizational psychologist and psychotherapist neurodiversity expert in Arizona, is one of those who was diagnosed as autistic as an adult.
She was diagnosed after her daughter was thought to be autistic and was tested, which led to her finding out that she had autism in her 30s.
Being diagnosed with autism gave her a better understanding of herself and was a positive feeling, Megrew said.
“I can be a little on the awkward side sometimes just because I might not know exactly what to say or maybe I need an extra second to think or maybe the sensory environment is giving me a headache as the lights are unique or the sounds are too much. There are little things that can tap and zap my energy away by existing in an environment where I don’t have control,” Megrew said.
This diagnosis for her didn’t shy her away from trying to understand what the autism spectrum is. She now works with businesses to teach them how to support neurodiversity in the workplace by creating a understanding for supporting and inconclusive work community.
Megrew also works with individuals around the world by doing consultations to help adults understand if they are autistic and to better understand what that may mean for the individual.
She shared that autism has been thought of as having certain characters, such as more boys and men having autism as well as being seen as an intellectual disability, which does affect approximately one-third of children with ASD.
“All of the new research that has come out over the past two decades proves beyond a shadow of doubt that it is so much more than what they originally thought, but all those stereotypes still linger and that’s why a lot of adults made it to adulthood that we were neurodiverse. I didn’t figure it out until my 30s, and the reason I figured it out was because of my daughter,” Megrew said.
Megrew’s and her daughter’s diagnosis also led to other family diagnoses because autism can be genetic.
As Megrew has spoke with many people around the world, she said she gets many stories from women sharing that doctors couldn’t diagnosis them with autism because of the stereotypical characteristics of what boys or men present versus what characteristics women present.
“There is science that proves that I’m not broken. I’m not, not good enough. I’m just neurodiverse and I had gone the first 30 years of my life holding myself to the expectation to neurotypicallity,” Megrew said.
As she excelled in some areas of her life and struggled in other, Megrew said she wanted to share her lived experience with others to help support themselves.
“It does hold you back in certain ways to not fully understand who your are or feel fully comfortable or safe in yourself or with other people. Does it mean we were all hermits before this? Absolutely not, but that tends to be what happens. This is helping people put the pieces together so that maybe for the first time very they can put together the puzzle in understanding themselves instead of just trying to make it work.”
Megrew said people making connections with others that share their characteristics via social media has led to more people discovering a diagnosis.
“Social media has been a great tool to listen to other neurodiverse people’s stories,” she said. “Search on YouTube for females with autism or adult diagnosis for neurodiversity. Listen to other people’s stories. But don’t over think it,” Megrew said on how to understand neurodiversity.
Frank Espinoza is a recent graduate of Northern Arizona University from the beginning of 2022. He prides himself on covering topics that give a spotlight to individuals or groups who give back to the community. He has covered local sports, community events, and important issues that impact the state. In his spare time, he loves to watch Street League Skateboarding and hang out at Cowtown Skateboards in Goodyear.
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