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Empowering Caregivers Through Voices of Autistic Culture

July 19, 2021

An autism advocate shares the importance of parents immersing themselves in autistic culture.

Empowering Caregivers Through Voices of Autistic Culture

“Dear Parents, get behind autistic culture!” J.C., Human Rights Advocate.

“The world of autistic culture is a steep learning curve, but very worth it. Especially if it empowers your child to advocate for themselves.” David Gray-Hammond, Facebook group host at Emergent Divergence.

“Autistic culture is so incredibly valuable and necessary to feel like you belong somewhere and other people understand you.” Heather Dimmitt, Recruiter at Ultranauts Inc.

Counting my blessings

I count myself as a fortunate human being because I have the honor of knowing thousands and thousands of individuals on the autism spectrum. I’ve met folks in person and online from all walks of life and from all over the world. 

One of my cherished memories occurred at the ANCA World Autism Festival in Vancouver, B.C., Canada, where I shared a beautiful 30 minutes with a nonverbal adult from Japan while watching a documentary. Not one word was spoken aloud, but a vast amount was communicated through body language and touch. She pointed, gestured, grinned, and rested her head on my shoulder. I’ve yet to meet another person with a soul as pure and smile as sweet.

Living in autism

Autism runs in my family. My personal and professional partner David is autistic, as are his three grown children. Between my work, advocacy, and family life, I’m pretty much immersed in autism! My middle son, diagnosed at age five, is thriving. At the age of 22, he is completing a virtual job internship as a content manager. Raising him was one of the hardest jobs of my entire life—and I used to be a middle school teacher, so I know about challenges!

Autistic culture is a resource

Humor aside, today parents of autistic children have access to a valuable resource that I didn’t have. Had I had this resource back then, I believe my parenting struggles (as well as my moments of extreme isolation and hopelessness) would have been significantly decreased. Today, parents and caretakers of autistic children and adults have access to a dynamic pool of individuals who are immersed in and part of the autistic culture.

On my blog, Everyday Autistic, I recently shared an article entitled Moving from a Deficit Medical Model to a Social Model for Humans on the Autism Spectrum: “Autism is no longer only a disorder. Some would argue it’s not a disorder at all. Numbering 1000s and 1000s of individuals on the spectrum, and their supporters, the autistic minority movement itself is evident that autism is part of a culture.”

The autism culture exists and it’s not going anywhere. And that’s good news for anyone wanting to learn more about the lived autistic life or anyone yearning to support a loved one on the autism spectrum. Resources are a click away—anyone can listen to the voices of actual autistic individuals who are as diverse in passions and experience as any other member of the human population. 

A diverse powerhouse of information is at your fingertips. You have the ability to tap into the knowledge of thought leaders, advocates, managers, CEOs, entrepreneurs, artists, mental health therapists, coaches, doctors, nurses, teachers, accountants, and lawyers. 

My good friend and colleague, who is autistic with a medical degree, belongs to a Facebook group with 200 autistic doctors. It is a secret group, unfortunately, as some group members fear the stigma of being “out” as autistic professionals. That’s a valid reason in itself to tap into the autistic culture: to help break the stigma of ASD and the prejudices that arise with mere mention of the word “autism”.

Our autistic culture is filled with young adults, students, and parents of autistic children. The opportunities for learning are limitless. You can find us by searching for #actuallyautistic or #autisticelders on Twitter or going to sites like my personal website: myspectrumsuite.com

We are out there and come in all shapes and sizes and all temperaments. Some of us are open to conversation, kind and patient. Others, of equal value, are super outspoken and may get rubbed the wrong way if someone misspeaks about autism. Some of us communicate traditionally, and others may need support to get their point across.

Autistic people have a cultural language, which, like any culture, is continually shifting with the passing of time. As an example, according to a survey of thousands by Autistic Not Weird, the majority of adults on the spectrum prefer “autistic” over “with autism”.

The majority, according to my experience, also despise the puzzle piece as a symbol for autism. We don’t see ourselves or our minds as a puzzle to be solved. We don’t think there is a missing piece to our neurology. 

In associating with thousands of folks in the past years, I’ve noted that despite some of our extreme challenges in daily life—such as how we function at work, in relationships, or in social gatherings—we don’t see ourselves as flawed or damaged. We have a neurological developmental condition that sets us apart from a societal norm of typical. 

In fact, an overriding message I hear from grown autistic individuals is that we aren’t broken and we don’t need fixing. This includes those who do not speak in the typical way and those who have experienced multiple traumas and disappointment. We, as autistic people, in my observations, tend to separate the pain and struggles from our individuality and unique humanness. I encourage everyone to do the same.

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Respecting autism

As part of our growing cultural language, many professional autistics prefer the term “coexisting” condition, rather than “comorbid” condition—a less deficit-focused/medical approach to language. I learned this myself when my book Everyday Aspergers was being peer-reviewed by a fellow autistic. I now abide by the preference. I am still learning new things about our culture! 

Many advocates, autistic and non-autistic alike, are working hard to create a world for your children where autism isn’t automatically viewed as a terrible life sentence. For example, my friend Haley Moss is a well-known autistic lawyer and host of Spectrumly Speaking at differentbrains.org. And I’m right there with these advocates!

When I asked some autistic individuals on social media about what they wanted parents to know about our culture, I received dozens of responses, ranging from “think positive” to “respect us.” One overlaying theme was to ensure caretakers are learning from actual autistic people about autism.

There were also some recurring topics that adult autistics wanted you to know, including: never give up, truly listen to your child, don’t limit your child’s options, maximize on your child’s strengths and don’t underestimate abilities, let your child know they matter and why they matter, don’t force eye contact, don’t try to make them into neurotypical children, understand how sensory sensitivities and sensory overload can affect behavior and ability, know coexisting conditions exist and what they are, and know your child is likely not intentionally being defiant.

Further wisdom was shared such as: “showering is hard for many of us!”, “ensure your child learns to swim”, and “examine the rules of society, question why they matter, and try to find ways that suit the child, rather than society (Shannon Lyons).”

A point was brought to light about how some of us are labeled hypochondriacs because of our extreme sensitivities to the environment and even the sensitivities we feel internally (such as our digestive system). Community members of our culture cautioned about our sensitivity to medicines, anesthesia, foods, and the like. 

Elisabeth Wiklander, Cultural Ambassador at the National Autistic Society, shared: “We autistics can experience things so intensely and feel so many things people don’t expect you to feel . . . as a child this had devastating consequences for me and I found it hard to trust adults and hard to trust my safety.”

More than anything, folks advised: find autistic friends and role models.

Many agree to also consider the possibility that, as a biological parent of an autistic child, you might be somewhere on the autism spectrum. My list of autistic traits, which brought thousands across the globe to diagnosis, was created in 2012 to help others find answers and to shatter the stereotypes about ASD. As a cisgender woman, I presented much differently than what was accepted as the norm of autism some eight years ago.

In closing, please note that there is a community waiting for you and your child. Seek us out.

This article was featured in Issue 121 – Autism Awareness Month

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