Imagine going through life knowing you experience the world differently than the average person, but not knowing why. Perhaps you don’t understand why loud noises, such as balloons popping, are distressing, the feeling of sand under your feet makes you want to crawl out of your skin, and social cues, like when it’s time to stop talking about your favorite show during a conversation, are challenging to grasp.
Experiencing these peculiarities without being able to name them can make navigating life difficult. However, getting an official diagnosis can bring a sense of relief and a positive sense of identity, as it has for singer Christie Michele, who was recently diagnosed with severe autism at the age of 42.
Autism spectrum disorder is a disorder that impacts the nervous system and how people think, feel, and communicate. As the name suggests, autism is a spectrum, which means the range and severity of symptoms are vast and can show up differently in each person. Symptoms of autism can also be behavioural, developmental, psychological, and cognitive.
Michele began experiencing some of these symptoms during childhood, which led to challenges with learning, socializing, and restricted interests, and learning.
“Growing up was interesting because I had interests that I was kind of fixated on, mostly around music and books,” she recalls. “And so, at certain times, instead of going to the playground with everybody else, I’d be in the library or I’d be in the practice room practicing.”
The singer adds that she would also have to stay later for homework or after-school programs to relearn what everyone in her class had already learned. Luckily, her mother, Lynette Payne, worked in the special education field and was able to advocate for her learning needs. That advocacy also extended to her career, since her mom managed her for years.
Examples of how these symptoms may manifest in an autistic person include poor social interactions, repetitive behaviors, difficulty with transitions or changes in routine, learning disabilities, hyperfixating on limited interests, sensitivity to sound or textures, or an inability to connect with other people’s emotions. Not every autistic person exhibits all symptoms, and each could experience them at different levels of severity.
Around 1% of the world, or 75,000,000 people, have autism spectrum disorder, and 1 in 45 adults in the United States are affected. Autism can be harder to detect in adults due to masking or hiding symptoms to fit in socially. Thanks to factors such as advocacy and awareness efforts, improved screening, and broader diagnostic criteria, individuals like Michele can give a name to their experience.
When the Best of Me singer publicly shared her diagnosis, she was met with mixed responses. Some fans praised her transparency and bravery, while others criticized the singer for saying she was “severely” autistic. The critics, many of whom are parents to autistic kids, argued that the singer isn’t severely autistic because she’s seemingly a functional artist who has built a successful career writing songs and touring the world. They also find her labelling herself severely autistic as harmful to people with the disorder who can’t function independently.
Michele says her intentions weren’t to offend people in the autistic community but instead to open up the conversation about her lived experience and the disorder.
“It breaks my heart that anyone was offended because that wasn’t my intention,” Michele tells ESSENCE. “My intention was to sort of open up a dialogue and begin a conversation around what it means to show up as an autistic person in the world and what that’s been like for me.”
The singer also says context is missing from her original post about the severity of her diagnosis. Michele’s post didn’t mention where she was on the scale of severity; medical professionals diagnosed with level two autism, meaning she requires substantial support.
“That is the clarification that I feel like I absolutely missed and left out is that it’s absolutely a spectrum. And autism looks very different in many different people,” she explains.
Some people may not know that severity in autism is based on impairments in social communication and restricted repetitive patterns of behavior.
Severity of autism is measured with the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, which is a handbook used by the American Psychiatric Association (APA) to diagnose a range of mental disorders.
Also known as the DSM-5, the handbook uses three ASD levels of severity. People diagnosed with level 1 require support, level 2 requires substantial support, and level 3 requires very substantial support when it comes to social communication and restrictive, repetitive behaviors. In Chrisette’s case, level two would mean having inflexibility in behavior, trouble coping with change, and evident challenges with socializing.
Some social media users argue that Michele is high-functioning—an informal term often rejected by medical professionals—used to describe autistic people whose symptoms are assumed to have a minimal effect on their daily functioning. Said individuals could fall under level one of ASD severity. As internet users only see Michele as a performer and not how she functions beyond the stage, it’s harmful to refute an individual’s diagnosis based on assumptions about their functionality. Although autism misdiagnosis is a reality, there is no uniform way to be severely autistic.
What severity looks like for Michele on a day-to-day basis is needing support communicating with other people since she struggles with social cues, awareness, and cognition. She says not understanding social cues contributed to her decision to perform at Donald Trump’s 2017 inauguration, which resulted in significant backlash.
“I think that in my mind at the time, I thought that performing would bring people together. And while I didn’t vote for Donald Trump, my thought was that I could say and do something meaningful that would, would help people. But as somebody with autism, social cues can be a challenge,” she says.
The artist also requires sound-related sensory accommodations when performing, as some loud sounds bother her. Additionally, the Grammy-award-winning artist exhibits repetitive behaviors, adheres to rigid routines, and struggles with change.
“The inside of my suitcase looks exactly the same every single time you open it,” she explains. “I sit in the same seat if I go on the airplane. I take the same routes if I decide to drive. And I don’t do well with things changing. I ask for the same foods on my rider every single time I’m out. I eat the same things when I’m out. And if it’s not on my rider, I may not eat that weekend or I’ll run to Whole Foods or have somebody run to Whole Foods and get frozen peanut butter and jelly sandwiches.”
Another challenge Michele deals with that’s less spoken about is how autism impacts her romantic relationships. We get a glimpse of neurodivergent dating in shows like Love On The Spectrum, but we are still learning about all it entails.
“I have made so many beautiful, beautiful, beautiful men cry. And I’ve had to explain as much as I understand about my neurodiversity,” Michele explains.
Not communicating in a neurotypical way has led to the end of relationships, she says. At times, the artist wouldn’t speak to partners for days at a time, but that typically doesn’t work well in romantic connections.
“Boyfriends [would] be freaked out because, ‘you haven’t spoken to me in two days’. Do you still love me? And it’s like, yeah, I do, but I don’t have anything to say to you right now. That has ruined the relationship part,” she says.
Michele says dating men on the spectrum has been easiest as they’re more likely to understand her unique needs.
“I have dated men on the spectrum. Some of them are open about being on the spectrum, and some are not. But those three-day breaks, they need them too. Some of them may sleep until 3 o’clock on a random Tuesday because we all understand what it means to be overwhelmed by the day. We don’t feel disrespected or offended when the person needs time to recoup,” she says.
Although living with autism has its challenges, the Be OK artist says being diagnosed has given her the validation she needs to confidently communicate her pain points. That includes challenges with bright lights, crowded spaces, touch, and flying.
“It just gives me the validation that I’ve needed to say, ‘I’m not okay with this.’ And now I get to say, even if it feels excusey at first, ‘because I’m autistic,’” she says. “And I can then, you know, one thing at a time, explain, this is what autism looks like.”