First: There are as many different ways to be autistic as there are to be neurotypical.
Health and Human Services Secretary Robert F. Kennedy Jr. speaks during a news conference on the Autism report by the CDC at the Hubert Humphrey Building Auditorium in Washington, Wednesday, April 16, 2025. (AP Photo/Jose Luis Magana)
As an autistic woman who has a full time job, lives on my own and even manages to blend in fairly well in social settings when I have the energy, my life has been a series of contradictions.
I’ve been treated like a genius for my vocabulary, memory and in-depth knowledge on a myriad of topics, yet I’ve also been infantilized for my obliviousness around the unspoken rules of behavior that seem to come to everybody else so intuitively.
I have come to think of myself as an autistic person who has “made it.” I’m not wealthy, I haven’t accomplished anything extraordinary. I’m not especially popular. But, after years of struggling and therapy, I’m at a place where I go to bed every night looking forward to the next morning. I have peace, freedom and stability. I have positive self esteem, and I truly love the woman I am.
The key to my success has been understanding my needs.
April, which was Autism Awareness Month, was difficult for me. Our secretary of health pronounced the kind of brain I have to be a “tragedy” in need of curing. An autistic child, Victor Perez, was shot by law enforcement during a meltdown. As someone who experiences meltdowns herself — and who knows firsthand how horrifying they are for the person experiencing them — I couldn’t help but think, “There but for the grace of God go I.”
It’s simple: When people with Autism Spectrum Disorder understand our own individual needs and are given the independence and financial stability to meet them, we are able to deal with the disabling aspects quite effectively — we don’t need to sacrifice the beautiful, unique traits that come with the autistic mind.
Here is what I wish people understood about what it means to be autistic.
My first wish
I wish people understood that there are as many different ways to be autistic as there are to be neurotypical. While it’s inaccurate to say that “everybody’s a little autistic,” it does manifest in a myriad of ways. What unites autistics is the fact that we have extra synapses. This impacts the way we perceive and interact with the world, but it doesn’t mean we all behave the same. Some of us have a high tolerance for physical stimuli but have never been able to master social cues. Some of us socialize quite well, but we struggle with changes to routine. It really does depend on the person.
My second wish
I wish people understood that “high functioning” and “low functioning” labels are misleading to the point of being inaccurate. These labels deny both the struggles of the “high functioning” and the potential of the “low functioning.”
Deciding whether to tell people that I’m autistic is a constant battle between whether I want them to continue to misunderstand my differences, or whether I want to risk them not believing me — opting instead to assume that I’ve hopped on some fad, or that I got the idea that I was autistic from TikTok, not from 26 years of living with this mind.
I’ve found that with autism, social cues are typically learned empirically rather than intuitively. My existence in social situations is a performance; I put on the appropriate character for the situation like an actor in a play. If I play that character well enough that you wouldn’t have known I was on the spectrum, it’s a result of an exhausting effort — an effort that then requires lots of alone time to recover from.
My third wish
I wish that neurotypical people put in as much effort into understanding me as I do for them. Communication is a two-way street. If autistic people can put in the effort to perform the appropriate body language and facial expressions for neurotypical people, then neurotypical people can learn to speak more explicitly — and to not be angry at us for misunderstanding when they don’t.
Autistic people weigh words that are spoken on their own. Neurotypical people weigh body language, tone of voice and facial expressions along with any words they hear. The only claim that neurotypical people have to a more legitimate communication style is by virtue of being in the majority.
My fourth — and final — wish
I wish that my fellow autistic people would learn to shamelessly advocate for our needs, be it privacy, written communication or routine. I’ve learned to incorporate my special interests into my daily tasks. I’ve developed a routine I stick to daily. I’ve been blessed with a job that accommodates my special needs, and I’ve also been blessed with enough income to live on my own, where I feel free to truly be myself.
I love my life, and I love my mind. I want the same for all my other autistic siblings out there.
(Rachel Barnes) Rachel Barnes is a journalist for Utah Business Magazine and graduate of Brigham Young University.
Rachel Barnes is a journalist for Utah Business Magazine and graduate of Brigham Young University. She was diagnosed with Autism Spectrum Disorder in 2015. She is also an administrative assistant, and was involved in educating her coworkers on autism for Autism Awareness Month in 2024.
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