What people with autism wish you knew: 'We want to be understood, not hidden away'
April is Autism Acceptance Month, previously known as Autism Awareness Month – but autism spectrum disorder (ASD) is still widely misunderstood by those outside the autistic community.
The Centers for Disease Control and Prevention estimates 1 in 44 children has been identified with autism spectrum disorder. And while autism can affect all racial, ethnic and socioeconomic groups, minority groups tend to be diagnosed later and less often.
It was previously thought that autism only affected children, but now we know adults can have autism too. And even though it can be more difficult to identify starting in the teenage years onward, sometimes people aren't diagnosed until later in life.
Signs and symptoms of autism can include difficulty with social communication and interaction as well as restricted or repetitive behaviors or interests, the CDC adds. People with ASD may also have different ways of learning, moving or paying attention.
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While there are TV shows and movies dedicated to stories about people with autism, the portrayals are oftentimes less-than-accurate or lacking diversity which can lead to further misunderstanding of this community.
Shows like "Love on the Spectrum" and "Everything's Gonna Be Okay" have been praised for featuring an array of people on the spectrum, where as the 2021 film "Music" has been criticized both for its portrayal of a person with autism and casting a neurotypical actress (Maddie Ziegler) to play the character.
But what do people with autism wish others knew? We asked.
Occupation: Banquets/catering Manager
Location: Reno, Nevada
His journey with autism: "At 36 years old, I was diagnosed, and it both answered many questions as well as manifested many more. It's as if I had to readjust my life from 'quirky' and a 'failure' to coming to terms with the fact I was born with a disability."
The biggest misconceptions he hears about autism:
- Assuming we are exclusively either "high-functioning" or "low-functioning": "This harmfully categorizes us. We are a spectrum of people, with good and bad days within our challenges."
- That autism is something to be "cured" or prevented: "Many of us like who we are despite the difficulties... We want to be understood, not hidden away or told we're problematic. Many of us are wonderful human beings, overall."
- Assuming our experience is like those often portrayed in the media and entertainment industry: "Comparisons like Sheldon from 'The Big Bang Theory' as well as the main character in the movie 'Rain Man' have become almost commonplace when I bring up autism to those who are unfamiliar with it."
What he wants others to know: "I'd like adults with autism to be viewed as we are, not how others want or wish us to be. We do things differently, both in our own world(s) and within our communities. Some of us, if we can, hold jobs, drive cars, have friends and romantic relationships – and none of it is easy. We fail frequently, yet we work many times harder for the things non-autistic people take for granted... The reason life is difficult for us is a lack of social acceptance, not because we are completely unable to function."
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Occupation: Marketing manager
Location: Dallas, Texas
The biggest misconceptions they hear about autism:
- Meeting one person with autism and thinking you know everything about autism: "Our experiences are so dynamic. One person might experience a lot of sensory issues when another person might say, 'I have my sensory stuff under wraps, but I really struggle with listening to my own body and understanding what I need to do to keep my body maintained.'"
- That certain adults with autism don't "seem" autistic: "There is a certain level of performance and presentation that autistic people can typically engage in. And that performance in and of itself is a labor but also it doesn't negate the fact that behind closed doors or even internally while I might be in the process of performing, I could be struggling immensely."
- That everyone with autism has savant syndrome or is an intellectual genius: "While that may be true for a lot of autistic people that they are able to perform intellectually at a very high capacity, that is not be the reality for all autistic people. I think the media's drive to make autism more palatable lies in showcasing autism as: they've got this stuff, but look, they're also a genius. And I think that can like be super harmful."
What they want others to know: "The best thing that you could possibly do for an autistic person, if they disclose to you, is to ask them what it looks like for them. Because these experiences are so diverse and so varied. Everybody's going to look different and in your bid to try and empathize, you might unintentionally be dismissive."
Occupation: Flavor compounder
Location: Central New Jersey
His journey with autism: "I was nonverbal until the age of 4. Fitting in growing up was never easy. I always felt different and not accepted by my peers. As an adult, I have learned to accept myself and not focus on what others think of me."
The biggest misconception he hears about autism: "That everyone on the spectrum is incapable of living our best lives and living independently. Although there are some that have higher support needs, that does not represent the entire community."
What he wants others to know: "We are great problem solvers and we represent a large portion of the creative community including the arts, engineering and more."
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