What is it like to be autistic? A social retrospective.
by Lisa Macafee
For me, it is many subtle things. People don’t know I am autistic when they meet me, there’s no “Rain Man” halo around me, and I can function in daily life. I am married, have two jobs, and two kids.
What I can’t do is subtlety. I can’t engage in “little white lies” and I can’t give messages with hidden meanings. I am an open book and my thinking is very rigid. Black and white, if you will.
When I come to the end of a logical theorem and get to my conclusion, it is done. I put a lot of thought in, and the conclusion is now obvious. To deviate from or compromise in this is illogical and perverse to me.
For example, I read about how much the meat industry damaged the environment in high school. I made a plan to slowly work out the worst offenders from my diet while I also found healthy alternatives and gave myself time to adjust my diet until I consumed no meat or fish. At this point, I decided that going full vegan was not enough benefit in the cost-benefit analysis for me, but I haven’t had meat of any sort since I stopped eating chicken and fish back in the 2001-era. I only agreed to have children if they would be raised not partaking in the meat-debacle.
I don’t think about meat anymore, it doesn’t even really bother me that other people eat meat around me, this was simply a problem I worked through for myself and now it’s done. I’m never tempted to try anything “just once”, because that equation was solved and the answer is written. LOL. Others find this kind of thinking strange. I understand because all my thinking is strange.
Being autistic means that I can never really relate to others. I don’t know if it’s the social anxiety about saying something rude, offensive, or too direct (which happens quite often), or if it has more to do with genuinely not having the ability to forge a bond with neuro-typical folks.
The only folk to whom I have really been able to connect with are other neuro-divergent rebels like me. Autistics, mostly, but also just your garden variety weirdos. Folk that make people uncomfortable tend to be the only people I CAN feel comfortable with.
When I taught, I talked with and was waaaay more comfortable with gang members, goths, kids with substance abuse issues, anger issues, schizophrenia, you name it. They were my people. My tribe. I love them still, and so many of their faces will be forever burned in my heart. I had about four students every year that I taught for. The ones who fueled my passion for the work. Always the misfits (if any of you are reading this, I love you)!
I engage in work pleasantries, when I have the opportunity, and I enjoy hearing from other people, but it is always a bit painful for me to do. I am exhausted by talking to people outside my close circle. I have to keep my guard up high, and even then, I manage to say something shocking or offensive on accident more often than not. I just can’t fathom how people can be so sensitive! But they are, and I can’t really censor completely what I don’t understand.
What’s strange is that I genuinely enjoy people. I just need structure. Book clubs are great- we can talk about the book. Counseling sessions are great because I help a student with what they want to do – my role is clearly defined. I was good at teaching for similar reasons, but it was incredibly taxing for my fibromyalgic-autistic self and had to stop.
I really love problem-solving. And I’m good at it! But I’m still learning that many people don’t want their problems solved. This is illogical to me and my brain will get stuck in a logic loop on X person’s issue and why wouldn’t they want to FIX it?! It’s maddening to me.
People like unhealthy but comfortable illusions sometimes more than unpleasant progress towards a better life. Does not compute! Error!
I jest, but my brain does not. It is still thinking about that time you complained about something easily fixable, and I am distracted in conversation with you by it, and I am probably making funny faces because of it.
All kidding aside though, being autistic has meant that I have hurt people I care about on accident and had no idea what the hell I even said wrong after they start crying. I have had to ask other people what it was that I said. Usually, it is something that they felt was implied in what I said.
I’m like “hey, I found this awesome way to get free money that you qualify for! Because who doesn’t like free money that you qualify for, right?”
But they’re like “Why would you assume I need money?! I’m fine! You think I’m useless! I hate you!”
And I’m like, “…what the fuck just happened?”
Neurotypical folk often say things with underlying messages and interpret nuances that aren’t there. I don’t have the ability to speak in nuance. My mind is plain and bare and what I say is really all I’m thinking.
I really do need to ask before trying to solve other people’s problems though. Apparently some people don’t want free money. ::mind blown::
Some people find it invasive that I think about them and want to help make their life more comfortable. Some people find it creepy.
This is me driving past houses at night who have their windows open. O_o ….juuuuuust looking.
Yeah. The voyeuristic desire to find how other people live combined with a compulsive desire to fix things isn’t the best combo.
It doesn’t’ help that I can’t talk when I’m upset. I mean, of course I can talk, but I can’t process complex reasoning or logic through problems. When I am confronted with an emotional problem, my brain shuts down. It’s called “autistic shut-down”, it’s apparently a thing. I do one of three things: cry, tell the person they are right (when they aren’t), or make loud animal noises that could be construed as speech if you listen very carefully.
The only way for me to talk when upset is to take long breaks to breath and stare anywhere but the person I’m talking to. Okay, I might stare at your hand or foot or hair, but never your face. Looking at your face when upset will make me revert back to one of the three fails mentioned above! I takes me a very long time to think when emotional.
This is why I write. Writing is the only way to process through feelings. I dislike having feelings. They are disruptive and make me feel “less” than. I know that we all have them, but dealing with them is so distasteful. I recognize that this is not healthy, but it is where I am.
For a long time, I thought I had to pretend to be “normal” to be hirable. Once I graduated with my teaching credential, I took out my facial piercing and dyed my hair a natural color. I traded my wardrobe comprised of vintage clothing, hand-made monstrosities, and combat boots for slacks and sweaters.
I felt like I was drowning. Suffocated by the banal.
If no one can see you, do you exist? I don’t think you do.
So if you bury yourself to be hirable, what are you anymore? Hirable, but no one. A cog in the machine. Paying bills. Being responsible. The mind shudders. Mine does anyways. What’s the point of life if you’re not living it?
How does one live as their authentic and still be hirable? I wish I knew, I would sell so many books. What I’ve been doing is speaking for the things I’m passionate about and being willing to put some work in for free to make my world a better place. I speak up with people who need an amplifier for their own voice and I try to speak up for myself and others like me.
I have been talking about gender and LGBTQIA+ issues at the colleges I work for. It has been revolutionary to find others who care about similar issues. It has been empowering and freeing to work together with like-minded individuals towards making things better for ourselves and others like us.
I am working back in some more authentic representation of myself. For example, I dyed my hair Flamingo Pink this week and bought a bunch of fun T-shirts knowing I would cut the backs out of BRAND-NEW shirts to accommodate my fibromyalgia before wearing them (and being okay with that).
I talked my husband into letting me start my PsyD program. I love school (I know, nerd alert!) and feel at my best when I am able to progress in my education. Plus, I think I’d make a damn good therapist for other neuro-rebels.
“…just fighting for change makes you stronger. Not hoping for anything will kill you for sure.” -Stone Butch Blues, Leslie Feinberg.
Hello friends! I would like to publish writings from myself and other people with autism as snapshots of how autism has affected them, since there are so many misconceptions and confusions about adults with autism.
Some background: I completed a 12 unit certificate program to be able to serve autistic students and am angry at how the program focused only on little boys as autistic and completely left out adults, the trans autistic population, and girls/ femmes/ women autistics. I am currently pursuing a PsyD to do more research on autism and gender.
Please contact me if you would like to add a story! If so, please send me your piece, publish name, title, and an image (can be a picture related to your content, your picture, an autism meme, etc).
I am interested in publishing this collection, because people don't know enough about us (but sure do assume a lot). Also on Facebook!
Lisa Macafee, autistic counselor with a hankering for social justice.