By: Dee Hondros (she | her), RMHCI, NCC, Lead Therapist at H&S
Most of the time, I think I know who I am and what I’m about: I am a therapist, a partner, a friend, a Disney parks super-fan, and a woman on the autism spectrum. I was diagnosed with autism as an adult, and I’ve learned a lot about myself. I consider myself an advocate for the neurodiverse community, and my work as a therapist reflects that more now. Naturally, I strive to provide that same intensity of compassion and support to myself, and I usually feel a sense of peace about that. Then something happened that rattled me.
I recently read a poignant article by author, advocate, and Autistic, Meg Raby. The title- “Sorry but Autism Awareness Month Doesn’t Work For Me” immediately gave me a sense that I was about to learn something important. Raby challenged us to focus this month on self-acceptance, and I felt energized and inspired by that. Then I read the article again, and I felt emotionally transported by this line: “Since when does another human being get to decide whether or not acceptance is even on the table. We weren’t asking permission.” Yes. Right! Oh. Wait.
“Since when does another human being get to decide whether or not acceptance is even on the table. We weren’t asking permission.” - Meg Raby
The parts of me that historically did ask for permission started sifting through old memories, trying to see if this statement checks out. A mental movie-reel played in my mind: I remembered people saying things like “You’re so quiet” and “Just loosen up” when I was doing my best to navigate some social situation that, to me, was just a cluster of people, noise, and bright lights. I was told I appeared disinterested or too self-conscious, and it looked like I wanted to get out of there as fast as my stilettos could carry me. That last part was true, though I didn’t know why at the time. I had forgotten that wearing uncomfortable high heels used to give me a paradoxical sense of comfort in stressful situations. I was ready to melt down, but I looked amazing.
“I had forgotten that wearing uncomfortable high heels used to give me a paradoxical sense of comfort in stressful situations. I was ready to melt down, but I looked amazing.”
Next, the mental images shifted to someone saying “Wow, you’re really coming out of your shell!”. They were astonished at my sudden ability to seem outgoing and talkative (This would happen when environments were fairly calm and I got rolling on a topic of interest to me). While I suppose I can understand the ‘shell’ comment-I did feel rather turtle-like much of the time-, it did create a sense of frustration in me. If I was ‘too quiet’, this would be pointed out and I would feel the need to explain. If I was more animated, I might be met with more questions and quizzical looks.
In response, I chose the best option I could come up with back then, not knowing what I know today. I worked hard to determine which behaviors would keep me in the safe zone, where people would be okay with me. Or at the very least, not judge me too much. I practiced doing and saying those things, testing out my theories about how I should present myself. When an experiment failed and I didn’t feel like enough, I filed away that information to use later.
“ I worked hard to determine which behaviors would keep me in the safe zone, where people would be okay with me. Or at the very least, not judge me too much.”
I was exhausted from the effort it took, and the payoff was marginal. I never really cracked the code. In fact, I didn’t really understand the code. I considered, and sometimes believed, that there was just something fundamentally unacceptable about me. Not simply my behavior- but me. I have experienced much healing and growth since then. Still, those past versions of myself are clearly alive and well somewhere in my psyche, and they need to hear this next part.
All of that effort we put into learning how to behave and suppressing other behaviors is called masking, and we did it to survive. And sometimes we still do it. Masking takes a lot of energy and is ultimately detrimental to our mental well-being, which explains why we were so tired and needed to go home early from the party (you know, the one we never wanted to go to in the first place). The effort of masking mixed with sensory bombardment from music, clinking glasses, and that guy who laughed really loudly at his own jokes contributes to autistic fatigue. And when we duck into the bathroom and sit there with the lights off, we are not being rude. We are managing sensory overload.
“ All of that effort we put into learning how to behave and suppressing other behaviors is called masking, and we did it to survive.”
Now, about those comments that upset us so much. They were observations and assumptions about the external manifestations of what was happening inside our brain. As such, those observations are not reliable sources of information about who we are or what we are capable of. Do we really trust loud-laughing guy with such an important task? I am guessing that in his own way, he is struggling to understand himself and the world around him too. Ultimately, autism acceptance starts with us, and the stakes are high. The world needs Autistic people as we really are, even if not everyone knows it. That’s right- you need us, loud-laughing guy. Maybe we’ll even hang with you, but only for a few minutes because it’s a lot. And that is acceptable. No permission needed.
Dee is a Registered Clinical Mental Health Intern, H&S Lead Clinician, Self-Professed Disney Parks Super Fan, and an amazing human being living on the autism spectrum. To learn more about Dee, read her bio on the Our Team page of our website. To schedule a session with Dee, call us at 407-308-0345 or contact us at firstname.lastname@example.org.