With Autism Awareness Month around the corner, I wanted to highlight my experience as someone that used to think they were an allistic (non-Autistic) nurse caring for “children with autism,” who now knows they are neurodivergent (ADHD and Autistic) and celebrates April as Autistic Acceptance Month instead of Autism Awareness.
In less than a year since my diagnosis, I have uncovered and corrected so much internal ableism that I had no idea I had! This unlearning, coupled with a brand-new understanding of what autism spectrum disorder is and how some advocacy groups are really not what they say they are, has given me a whole new view on autism and other neurodivergent conditions for which I am so grateful.
I want to clarify that this is an opinion piece* and that I will link supporting evidence throughout this article. This all comes from my experience as a late-diagnosed Autistic person, so I do not claim to speak/communicate for all Autistics. Also, if this article triggers you in any way, I invite you to sit with that before dismissing me, ridiculing me, or claiming that I am not Autistic because I wrote this piece or because I am not like Sheldon Cooper from the Big Bang Theory or your 10-year-old nephew.
Now, onto calmer and kinder words. If you are still reading, thank you.
Autism Awareness vs. Autism Acceptance
Autism spectrum disorder is a developmental disability that affects how a person sees, processes, and interacts with the world around them – a world that, most of the time, is not created in a way for Autistics to thrive.
The definition of awareness is: “Concern about and well-informed interest in a particular situation or development.” I love how even the Google result definition and the definition from the Oxford dictionary underline “well-informed”.
What I find interesting about Autism Awareness Month is that most of the focus and research being shared historically has been focused on allistic caregivers. It also emphasizes awareness about the disability aspects, the challenges, and the overall despair of Autistics and their caregivers.
Awareness, no matter who is sharing it and embracing it, has no action involved. It is just saying that autism exists, I know it is here, and I am gonna take some time to read some information about it. It might change a person’s perspective and therefore how they interact with an Autistic person, but in all honesty, it typically won’t.
Now, let’s define acceptance using a social definition of the word. Acceptance is “the action or process of being received as adequate or suitable, typically to be admitted into a group.” For Autism Acceptance Month, that means it is time for Autistics to be “heard,” seen, and accepted into neurotypical society as they are without changing themselves, being forced to blend in, or even taking on the responsibility of educating those around them.
Autism Acceptance Month (April) is about autism pride. It is about having time for us to accept ourselves as well. It is about enjoying time on social media and in our communities. We can sport some extra gear and clothes to showcase our t-rex arms, stimming, or whatever our favorite part of our Autistic selves is.
How *Not* to Celebrate Autism Acceptance Month
This part of our blog is not for Autistics who like the puzzle piece. I will never tell you how to express yourself, your brain, or your view of the world. This information is to educate allistic readers.
Most Autistics do not identify with the puzzle piece that was created by The National Autism Society in the U.K. It is said to represent the complexity of autism, and the colors and shapes represent the different families “living with the condition.” Sadly though, this mindset often focuses on “curing” and not on supporting Autistics.
It focuses on the belief that Autism in its essential nature is a deficit-based condition. I am not saying that my life is all blue skies and happy days – being Autistic and ADHD is hard as hell, especially when you’ve gone 35 years undiagnosed and misdiagnosed – but I am not broken, nor am I missing anything. See this link to read another article about the meaning of the puzzle piece and hear from more Autistic voices.
Before getting behind an organization, it’s important to do your own research. Do they seem to be focused on the perspectives and experiences of caregivers instead of helping Autistic people live as their Autistic selves? Do they have Autistic people on staff or on their board (nothing about us, without us!)? Are their community initiatives disability-inclusive?
Autistic-lead Organizations You Should Know
I follow quite a few Autistic-led organizations that align with my perspectives. Here are four of my favorites:
GRASP: Global and Regional Autism Partnership: GRASP offers discounted evaluations, coaching, free support groups, and more.
National Autistic Society: This is a great resource of information and a good place to get some understanding and awareness.
Autistic Woman and Nonbinary Network: “We are committed to disability justice, gender & racial equity, neurodiversity, and trans liberation with a focus on transformative and restorative justice in disability spaces.”
Autistic Self Advocacy Network: Just tons of good stuff here.
How to Accept & Appreciate the Autistic People in Your Life
Phew, heavy stuff, right? I know it is, I actually cried a few times when I realized how toxic my views were without even knowing it, and despite my positive intent over the years. So, I wanted to share some ways I have switched my own narrative over the years, and how I focus my efforts on myself and the rest of my community.
- Ask your Autistic friend or acquaintance if they have language and other preferences. Do they use person first or identification first language? Do they need accommodation in your relationship? Can you do things to embrace and accept them more? Or you could just ask what they want you to know.
- Utilize identity first language: “Autistic person” vs “Person with autism”.
- Do not infantilize an Autistic person, no matter how they present themselves.
- Stimming, repetitive movements, and happy hands are all normal. As long as no one is being hurt, it should not be stopped. Do not shame an Autistic person for an Autistic trait.
- Do not stare.
- Do not say that you are sorry if someone shares that they or someone else is Autistic.
- Accept self identification (self diagnosis) as Autistic as valid!
- Don’t assume someone’s neurotype based on appearance. For instance, don’t say, “But you don’t look Autistic.”
- Do not offer unsolicited advice.
- If an Autistic person says Applied Behavioral Analysis is/was traumatic, listen to them.
- Instead of using the terms “high- or low-functioning”, please consider saying “high-support needs" or "low-support needs”.
- Share the rainbow infinity symbol or light it up gold in April, not a puzzle piece.
- If you are not Autistic, consider sharing Autistic voices on your social media page in April.
Striving for Positive Change This Autism Acceptance Month
All Autistic people are unique; just like you would not like to be compared to others, neither do we. Comparing and contrasting people in terms of “autism severity” and, in turn, validity of their experience, is where we limit our understanding. With limited awareness and compassion, we automatically limit our acceptance of wonderful people into our lives, communities, and hearts.
*Opinions expressed in this article are those of the author and do not necessarily represent the views of Bened Life.
Other articles by Casey-Lee Flood, RN, HWNC-BC: