I’m not going to try to explain the huge world of spectrum living. There’s others who do it much better, like Amethyst’s vlog “Ask an Autistic.” I’m going to speak about the vast variety in how Aspies and other NeuroDiverse folks are as people and something to keep in mind with your ND loved ones, co-workers, etc.
Then we’ll look at self-care and boundaries for anyone with a disability, explaining it to prisoner pen pals, and resources for Actionists who could easily burn out and resources for spectrum women, whom everyone should know something about. (I believe we need to have some knowledge of all types of people, being aware of how privilege and oppression intersect in everyone, and generalizations are dangerous to cling to. We need enough education from diverse populations to know that we need to listen and some reasons why.)
Actionist burn out is why nothing changes much. It’s the same young, idealistic, no-experience beyond Evergreen College types with theories and not much learning from mistakes because they haven’t had enough mistakes or the wisdom and hopefully humility age gives. It’s square one with most groups, because the elders (35 years old?) couldn’t find an emotionally and physically sustainable way to continue. If you are living with a disability or in prison you have to constantly be advocating just to survive. We can’t drop out. So….
Yes. 1. There’s very little we in this spectrum world have in common. Oh, the general concepts take wide range. Sensory Processing Disorder – yes, we all have it but what’s annoyingly understimulated normally and what’s painfully overstimulated easily are really different with all of us. You can’t really assume. Our special interests that we hyperfocus into, submerged in joyfully, the pressure of “the outside world” removed from our minds – all different. Our ways of communicating whether with or without using mouth parts again are very different. The scripts we memorize to deal with other humans in certain situations are cobbled together from very different sources. How well we’ve learned to take care of ourselves with alone time, sensing the fine line between interest and overwhelmed, allowing meltdowns that don’t harm us more than horrendous, inconsolable pain and then massive exhaustion, and finding our stims that reset our brains like fiddle toys, hand flapping, rocking, twirling, and all the other “odd behaviors” that block out the blasting stimuli that hurts and helps us get a handle on balancing our inner equilibrium for living in a world not made for us because we’re a minority (1 in 66 kids are ND according to the TV commercials, so we’re a large minority). How much we understand about autism and in what context, who taught us and why, the resulting feelings about it and the core self which experiences the world differently – it’s all different. The amount of socializing, physical energy, ability to fake and pass as NeuroTypical, help needed, emotional awareness about ourselves and others, our stubbornness, our irrational -looking lashing out against a totally overwhelming world, our hiding in our own imaginations and dark rooms, openness to new things, the physical disabilities like our feet and gait issues that often wreck our backs and a million other things – we’re all completely different.
2. It’s different every day for someone autistic. NeuroDiverse folks already have less energy. It takes a lot out of us physically to navigate the NT world. We’re worn down by assaults to our nervous system and social demands. How close someone is to a meltdown or shut down changes constantly. Our levels of “proper social skills” and ability to read malice in others drastically can change. How well we can communicate how NTs want changes.
It’s not regressing; it’s usually too much NT demands and not enough self care time like 6 hours with model trains or stacking boxes “correctly” or sleep or food with the tight texture and the right lighting and sounds and clothing and turning away from other people, unless it’s factual information about a special interest.
Peer counseling where one person talks (and the other passes no judgement, gives no advice, offers no “Me too” interrupting and derailing stories, or telling us what “our problems” are based on the peer’s own work projected on others) has been great for me. A friend in North Hollywood (Toronto at the time) with a typical crazy industry schedule and I were doing peer counseling without knowing it. Naturally, we both were best at sharing the last month’s events, insights, and emotions in an hour long monologue. Somehow we’d naturally know how to switch roles. We didn’t share a lot in common yet she was one of my best friends who I really miss. She might make blunt statements based on her experiences for success in the film industry – my wearing make up was good, losing weight is important for business, stuff I didn’t care about, but really is part of the demands of the incredibly sexist film industry. You don’t look hot, you don’t work (unless an important male gave the job to you).
To others, these probably didn’t look like conversations. We barely commented on what the other said. She smuggled herself into Iraq during the war and shoot footage. In Kuwait she recorded drug deals in mosques. She interviewed older women in Jordan who fondly remembered wearing miniskirts and education before economic help was given by a conversative Muslim agency and their freedoms and comforts were greatly limited and the younger women had no idea what living with those freedoms was like. She talked about how heavy the black fabric was in the desert, how high the temperature was for women suffering underneath. The way Kuwaiti kids decked out in designer clothing (their parents owned the companies) would drop bags to the sidewalk and have “the workers” ( Indian immigrants) quickly pick them up and usher the teenagers to Rolls-Royces and Bentleys, the scorning of Egyptian kids for being from a poor nation, and the hatred of Palestinians for helping Saddam Hussein because he was the only Muslim leader to extend any help to the displaced of Palestine. Her trips to Israel where every conversation seemed to start with “I’m not racist, but I hate Jews,” ” I’m not prejudiced but I hate Christians,” and “I’m not racist but I hate Arabs.” The home of hate, she called it. Her reason for living in the Middle East was perfectly autistic: sick of the prejudice of the media, her family, she wanted first hand knowledge on both a deep and broad level.
You’d think I’d have something to say, but like a lot of spectrum people, if I don’t have firsthand experience with something or a very broad, deep “special interest” investigation into a topic, I will be silent. It’s not my experience. I can’t have an opinion. I don’t know what it was like for her emotionally or how it changed her politics unless she tells me. Give people enough time, they’ll tell you almost anything. I never had any comments except when she went from blonde to redhead, gold jewelry to silver. A sign that she’d become less mainstream. What prompted it, I wondered.
It was a really important relationship. Clear boundaries because of her work schedule. No surprises. Her typical Aspie rather blunt and rude sounding comments of total honesty that didn’t apply to my value system, I knew was her way of caring.
Peer counseling is basically the same thing, but without any suggestions. Give me 45 minutes to talk it out and I’ll have things sorted. It won’t be how someone else might do it, but I’ll know what I want, what’s upsetting me, how to deal with it, what’s good but confusing, let my developmentally delayed aspects and super advanced aspects get on the same page. I don’t want approval, just validation that my experience in life matters enough to be witnessed.
Writing letters is a lot like this. I don’t know what is “diary” information or “letter” information or “public blog” information because it’s all relevant to living. It’s information and sometimes something clicks and helps someone else, usually the “diary” level information . My letters help me clear my brain about topics I think about as if writing is a giant etch-a-sketch that afterwards I can shake clear. Because being being isolated 24/7 due to the world being put into quarantine due to the choices to poison the air that everyone makes as they wash their hair with basically dish detergent, put on highly chemical fragranced lotion and clothing with Febreeze, it’s really nice to think about someone else’s world. To research how checking accounts work in depth, including information about credit unions and prepaid cards and check cashing scam places and organize it is kinda my autistic joy. Organize information! Teach it! Discuss it! My life has meaning! My experience with the world taught me helpful things! I’m not a problem I’m trying to solve.
My pen pals know about Aspie women – they get handouts. Why? They want to understand, not accidentally upset me. Same with Multiple Chemical Sensitivity. That’s a hugely popular topic in prison because it’s so scary and obvious that the government doesn’t care about its citizens, only money. A one page handout of the proven diseases causes by synthetic fragrance has them mesmerized.
Most people in prison have a disability although it’s often overlooked, so they often tell me about going through a car windshield at age 8 and the seizures ever since, or the two strokes causes by tear gas guards used on someone else and teaching themselves to walk and talk alone in prison, or cleaning up the remaining brains and blood after their father killed himself with a gun. (That’s all one pen pal.)
As I write about my struggles with self care, they start thinking about self care. What is it? What are boundaries? I have a lot due to being an Aspie which I’m learning and ones from Mast Cell Activation Syndrome, the most probable cause for MCS. As I process that in letters, it gives ideas to people in prison who have very little right to boundaries. If a guard of the opposite gender takes you alone for a shower – something unheard of with the short staffing and against the rules – because that prisoner filed a complaint against that guard who states at them naked and alone – you can’t say no. So boundaries? What are they? Needs – how do you get to meet then when everything is out of your control?
Well, having a chronic illness like MCAS, MCS, Chronic Fatigue Syndrome, Myofascial Pain Syndrome, hypothyroidism, reactive hypoglycemia, extreme skin sensitivity, a zillion food and medication intolerances, anxiety, and major depression, or being an Aspie who is often at the whim of how stress takes its toll – it’s a lot like prison in how little our needs are met or taken seriously, the way we don’t control flares and “getting better” (ie like someone able bodied or NT with a ton of emotional issues they don’t address making them high special needs). We’re even morally judged for it in the Calvinist capitalism of the USA. We have to pretend to be perky and well when calling a pharmacy or medical supply center or doctor’s office because people are immediately hostile towards people who sound like they’re exhausted and sick. Trust me. The useless mazes of social services and health insurance – It’s a lot like the futility of doing things by the book with correct paperwork etc in prison.
It’s why I don’t understand why more chronically ill people don’t have a prison penpal. They’ll be concerned about you long after everyone else forgot that you being sick or exhausted or whatever is a forever thing. Compassion fatigue is something both prisoners and chronically ill and spectrum folks face in others who are tried of our problems but the problems still come and come and –
Anyway, I hope you learned a little something about autistic spectrum folks, maybe understand something better, or are thinking about chronic illness, prison, or Calvinist capitalism differently. Maybe your behavior will change knowing more. Maybe you’re thinking about self care.
The only decent activist self care book I know is: Sustaining Spirit: Self-Care for Social Justice, by Naomi Ortez, ReClamation Press, who publishes “Wisdom from Disability Communities.” If you advocate for yourself, you’re an activist. If you write someone in prison you’re an activist. And you need ways to take care of yourself. “The Body is Not an Apology: The Power of Radical Self -Love” by Sonya Renee Taylor, published by Berrett-Koehler is far more radical than the title suggests, but it’s not as hands on. It’s more supportive of difference in bodies including brains which means every single reason for prejudice – all prejudice is against some physical bodies – Brown bodies, older bodies, certain gendered bodies, neurological differences in bodies, the sex bodies have, etc – so massive radical love of bodies and stopping the shame would solve it all, and of course you start with yourself. Sustaining Spirit is much more a meditative book. It’s filled with a lot of things I know but forget to do. Why I have to do them. Have to. No option. It’s by a Disability Justice activist, too, so she “gets it” if you have disabilities.
To better understand spectrum women I highly recommend “Women from Another Planet: Our Lives in the Universe of Autism” edited by Jean Kearns Miller and published by AuthorHouse, and “Nerdy, Shy and Socially Inappropriate: S User Guide to an Asperger Life” by Cynthia Kim, Jessica Kingsley Publishers.