“I wish autistic celebrities would just spend one day with our kids,” a frustrated mother confided in me as she waited for her 22 year-old daughter to be carried into her car seat.
A few summers ago, I was working with an organization that provided daily care for autistic young adults. The program was an oasis for kids who thrive with stimuli. Activities such as horse-back riding, painting, soccer games, and baking were available to clients depending on their unique abilities.
But severely autistic people face another reality that does not get talked about as much. Routine changes or communication issues often lead to dangerous and potentially self-injurious outbursts; biting and scratching, pulling apart paintbrushes, and throwing food are some I’ve seen. Sadly, our society still considers this behavior taboo.
The distinction between people who have lower social-emotional skills and those who suffer from severe autism is key.
Consider some well-known celebrities: Wentworth Miller, Anthony Hopkins, Elon Musk, Courtney Love, and Greta Thunberg. What do these individuals have in common, besides being extraordinarily wealthy and influential? They are part of a growing cast of Hollywood stars who have “come out” as autistic.
Modern medicine has certainly expanded the potential to diagnose a spectrum of disorders. But as science evolves, new terminology must be assigned to those who can live every-day life without specialized care.
When celebrities talk about their autism, they plant misleading ideas about the reality of the condition.
Tech Billionaire, Elon Musk, “came out” with Asperger’s on an episode for Saturday Night Live. He not only mistook himself as the first person with Autism to come on to the show, but also used the platform to crack jokes about the disability.
“I don’t always have a lot of intonation or variation in how I speak… which I’m told makes for great comedy,” he joked after taking the stage. “Look, I know I say or post strange things but that’s just how my brain works…To anyone I have offended, I just want to say I reinvented electric cars and I’m sending people to Mars on a rocket ship. Did you think I was also going to be a chill, normal dude?”
The rhetoric celebrities like Musk use to describe their autism depicts the condition as an unexpected gift, one which enhances their ability to be successful in their arena. That is not the case for most people who suffer from severe autism.
According to a report from Drexel University’s Autism Institute, only 14% of autistic adults have ever held paid jobs in their communities. An estimated 40% of people with autism are nonverbal. Autism is not typically the beautiful, creative, hyper-intelligent gift that celebrities make it out to be.
Celebrities who are made into icons of the autistic community, rarely acknowledge that many individuals with autism are receiving 24-hour daily care, live in group-homes or are bound to a life in institutions.
Autistic celebrities could use their powerful platforms to draw attention to the needs of severely autistic individuals, but they opt to advocate for more symbolic action such as increased awareness around disabilities and a greater embrace for those who think outside-of-the box. Those who suffer from autism need more than blue ribbons and empty promises.
Most celebrities with autism go well into their adult lives, before “coming out” as autistic. Many have graduated from college, been married, and have their own children to look after. These celebrities can articulate themselves, converse with others, shop for groceries, drive cars, and use the bathroom by themselves.
In reality, a very small segment of the autistic population can live on their own and care for themselves. 87% of young adults on the autism spectrum lived with a parent at some time since leaving high school.
Caregivers face immense bureaucratic challenges that are overlooked by Hollywood and the media.
With a shortage of residential homes for people with autism, and questions over the quality of care provided at such institutions, more parents and individual caregivers have tried to form their own group homes. Yet, the government only allows not-for-profits and corporations to open group care homes. Why aren’t autistic celebrities talking about this issue?
In a culture that sees autistic celebrities directing movies, singing, coding, and telling jokes, those with autism are also expected to comply with society’s rules and expectations.
Autistic journalist, Zack Budyrk, wrote about the trend in a piece titled “More celebrities are coming out as autistic. That makes a huge difference.” Budyrk argues that these celebrities are paving the way for more people to “realize” they might be autistic and get the “accommodations in which they are legally entitled.”
Yet, celebrities must acknowledge Celebrities that they don’t need the same accommodations as those with more severe forms of autism. These celebrities can articulate themselves, converse with others, shop for groceries, drive cars, and use the bathroom by themselves.
In response to the article, the National Council on Severe Autism posted, “The Washington Post seems to specialize in pieces that spin Autism as a mild social disorder. The idea that Anthony Hopkins and individuals like our severely disabled children share an identical diagnosis is grotesquely, parentally absurd.
Hollywood celebrities capitalize on their autism diagnosis, but they fall short when it comes to talking about the reality of what autism encompasses. They fail to confront the barriers that autistic people face in day-to-day life, and do not understand or amplify conversations around the accommodations autistic people and their caregivers need. People are happy to support socially quirky stars, but they are silent when severely autistic children are unable to receive the care and accommodations they need.
Miska Salemann is a student of journalism at Northeastern University. She has contributed to local papers including Seattle’s Child and The Bay State Banner and is the founder of American Policy Examiner, a website that translates U.S policy to make it more accessible to the average American.