I am Autistic
I live with multiple invisible disabilities. Some I talk about pretty openly, but one I don’t, which is that I am autistic.
I don’t talk about this because I’ve been terrified my whole life that people will discredit me, ignore me, and treat me differently if they hear this word or hear about my internal experience.
I don’t talk about this because like all autistic people I have been pressured from early childhood by most people in my life to fit in and behave neurotypically (like an allistic) even when doing so goes against my basic needs and best interests.
I don’t talk about this because I “pass” well enough that mentioning it seems more risky than useful except with people I know very well.
I don’t talk about this because I never received a formal diagnosis of autism, and like many people I believed that unless I consistently behaved in an especially weird way and got “caught”, I wasn’t *really* autistic. I am grateful for many in the online autistic community advocating for inclusion of autistics like me in the conversation.
For instance, I appreciate this section in one Revised Alternative Autism Criteria:
“A reduced or lack of conscious awareness and/or use of allistic (not autistic) nonverbal behaviour and communication such as facial expression, gesture, and posture. This criterion should not exclude persons who have learnt to read or otherwise comprehend nonverbal behaviour by rote learning, particularly adults. Intentional learning to overcome an inherent difficulty in comprehension is supportive of this criterion. It should also not exclude persons who have been taught to use nonverbals to be less visibly different. In such cases, internal report of difficulty should take precedence over apparent behaviour.”
But here’s the truth:
-People often tell me I appear calm or unfazed when I am freaking out inside, busy listening to voices, or dissociated.
-I feel all the same things everyone else does, if not more than many people, but the way I would most naturally express these feelings would in many cases involve shaking, rocking, dancing, hitting/rubbing myself, stretching, cracking my knuckles, yawning or making weird noises, rather than making a face/posture and verbalizing what I am feeling.
-Thus, I have to work hard to memorize and produce appropriate forms of emotional expression. I have become skilled at this – it’s pretty much automatic in many cases – but when things are new or stressful or stimulating my trauma history I often have no idea how to respond and freeze instead, burying the feeling inside rather than respond how my body would most like to.
-It is very hard for me to process peoples’ words and body language at the same time, often leaving me unsure of how an interaction went, especially if it was an emotional one.
-I sometimes wear clothes and often enter physical spaces that are extremely uncomfortable and overstimulating for me in order to fit in or be around other people. For instance, I was made fun of once in elementary school for always wearing sweatpants to school and rarely wore them outside the house again, even though they are waaaaay easier for me to wear than almost anything else.
-I often avoid new, confusing, or potentially stressful situations because I am afraid I will dissociate and be caught acting weird – and summarily judged for it.
-I have spent years trying to train myself to be something I’m not through misuse of spiritual and self-transformation practices because I secretly hated my autistic qualities.
-I have a terribly hard time managing tasks and planning out complex projects without stimulants.
-I obsess over nerd stuff. It is soothing and helpful for me to comprehend mythologies, allegory and storytelling. I sink time into mastering games and puzzles. Basically, I love to think about anything I can categorize and optimize. I particularly nerd out about human systems and fantasize a lot about communication, creativity, systems of power, and decision making processes.
-When two or more difficult or disruptive things happen (I have a list of what these things are) within a particular window of time, I end up feeling sick and overwhelmed for days. (see: “Spoon Theory”)
-Even after 31 years of practice, some forms of spoken communication I still CANNOT take anything other than urgently literal. For instance, people often feign ignorance about something in order to produce a wry, humorous question or make an intentionally false statement. In most cases I want to correct the misinformation and let the person know the way things really are. It is excruciating for me not to. I completely miss the joke, and often cannot hear what happens next in the conversation while I process what just occurred.
-Gender is really hard for me to understand, especially male gender. I know I am socialized as a man and notice myself doing man-things – like I used to act authoratative about a lot of things to cover my deficiencies – but in general I am uncomfortable around the confines of straight, cis masculinity. I identify as queer and genderfluid but I’ve almost always presented as straight and cis in my general effort to pass and not draw attention to my identity for the reasons stated above.
-It was excruciating for me to transition from childhood where a certain amount of personal and shared “stimming” is acceptable, to adolescent and adult roles where this behavior is discouraged.
-I live with a lot of anxiety. I didn’t used to. I don’t believe anxiety is inherently co-morbid with having an autistic mind. It is the predictable result of being neurodivergant in a culture that really is not setup to accommodate you.
-I have been shamed countless times, often by people with authority over me, and supposed compassion for me, for being the way I am – or for failures and misunderstandings that arise out of my attempts to compensate for my disability.
-My entire life I have consciously worked to mimic the mannerisms of people I admire or thought I was supposed to act like because I have little intuition for creating a personal social style (this is very related to my struggles with gender).
-I regularly subdue the urge to info-dump everything I know or have read on a given topic when it comes up in conversation. (Releasing this valve is a significant part of why I enjoy teaching/presenting)
-I know there are many more critical ways that being autistic impacts my life that I am not even thinking of yet because the struggle to fit in has become so normal and pervasive that I don’t even notice all the ways I am trying to suppress and alter myself.
So, I am probably going to be sharing more about autism and disability, especially as they intersect with racism, gender, and other forms of oppression. For me, in acknowledging that I am autistic, combined with my IBS, fatigue, food sensitivities, issues around sleep, trauma history, and emotional distress, I am publicly stating that I am a disabled person.
For me personally, this is a huge relief. It turns out that my many failures trying to fit in and sustain a livelihood in this culture where it should be easy (I am a white man from an educated family in a white-male supremacist culture after all) were not “all my fault,” as I always thought. It’s much more empowering to think of myself as a strange bird transported to a habitat that’s doesn’t quite mesh with my genes.
Some Autuism Resources (From this article about Autism $peaks)
- The Autistic Self Advocacy Network
- The Autism Women’s Network
- Parenting Autistic Children with Love and Acceptance