Anxiety and Theory of Mind
By Lisa Macafee
My nephew is deciding where to attend high school. They are debating between a school very close to their house and a school a ways away.
This elicited waves of intrusive thoughts and memories from high school and I worry-exploded all over my sister-in-law (sorry, my friend!).
One of the problems I had in high school was that I struggled (still do) with theory of mind.
Theory of mind is the ability to easily take others’ perspectives in mind. Of course, if I am thinking about it directly, I will be able to think about how ____ might make ____ person feel, but what I miss are the subtleties.
For example, I never told anyone how terrified I was every day of school because at any moment I could fall into the chasm or despair that fissured all around me because I assumed everyone knew. Or that everyone felt that way. Or that people who loved me knew because how could they not?! I see now as an adult how absurd that is. How could anyone know my innermost world if I didn’t share it with them?
We autistic folk struggle with this.
I was so miserable in high school that I got up one day from the very nice group of girls I had sat with all through middle school and walked away. They very not my people. They were nice, but so normal. I couldn’t relate to the things they were saying anymore, and trying to was exhausting. We call this masking. Masking wears us out.
For a week or so I just walked around the school alone. The chasm of despair threatened. Eventually, I sought out other kids sitting alone and sort of collected them together for social warmth. If all the loners were together, we wouldn’t be loners anymore. Brilliant.
I had made a pact with myself. The deal was that I wouldn’t have to kill myself if I could be useful to someone else. I felt like such a burden to others around me and so immensely lonely that this was the best I could do for myself.
What I think is shocking in retrospect is that I never thought to ask for help. I just assumed that if I should have had help, someone would have given it to me.
Because no one saw my private hell, I assumed I deserved it.
My friends dubbed the group of misfits I collected “Lisa projects”. In a way, they were right. The project was saving myself, and they were helping me do it.
My anxiety for my nephew is real because my fear was so tangible in high school. I carried a knife on me every day. A knife! I can see now that if I had pulled a knife in a fight and the other person also had a knife that one of us may have died, but in my 16 year old mind, having a knife meant I was super scary and the other person would just back off.
I had reason to fear for my safety. The group of friends I collected were misfits and got picked on. I would periodically have fits of rage where it was as if I was having an out-of-body experience.
Once, some skinheads had picked on and threatened a Jewish friend of mine. I can’t believe this was me, looking back, but I went over to their group alone. I sat sown in the middle of their little group and calmly said that I had heard that they wanted to beat up my friend because he was Jewish. I said that if they needed to beat someone up to feel good about themselves, I came to offer myself. That I was a girl and couldn’t possibly put up much of a fight, so if that’s what they needed, then they should go for it! If not, then stop threatening my friends.
Who was that girl?! I would never have done that if I had thought about it, but there was no thought. I was just there. It was like I was watching myself from above. Damn, girl! So yeah, I carried a knife.
I didn’t know this kind of life was unusual. I thought everyone had similar issues. My father was the survivor of all sorts of abuse and lived in an orphanage for part of his life, so in comparison to that, my life was a cake walk. Having taught high school for 11 years and counseled in community college for four years, I know now that my experience was not typical. My experience was a bit of a shit show, really.
I lived with this bargain – believing myself so unworthy of life that I needed to earn my existence through service to others – well into my 30s.
The ever-present gloom and suicidal ideation only went away when I had Rowan, my daughter. She is six today. I am 39. Something seemed to change in my hormonal make-up when I got pregnant with her that helped me. I am very grateful.
The fear and anxiety for others doesn’t go away. I see a lot of myself in my nephew. I pray to the endlessness that their experience is not like mine. I encourage them to tell me if they want to talk. I don’t’ want to assume that they need help like I did, but I don’t want them to suffer in silence like I did. I want a better life for them than what I had.
If I had known I was autistic and had words for non-binary then, I wouldn’t have felt so alone. I wouldn’t have felt like a freak all the time. I would have been able to identify as different, not bad.
I still want to live a life of service. The younger generations need us to make their lives filled with less pain than ours were.
How Abusive Relationships Start
By Lisa Macafee
Besides the alarming statistics below showing that 1 in 3 women and 1 in 4 men experience this, 57% report it difficult to identify dating violence. Autistics are particularly vulnerable to abusive relationships because we don't pick out the early warning signs.
I started writing this piece in December of 2020 and thought that if I could just get it out of my brain and onto paper, then I could stop thinking about it.
No such luck. Let’s talk perseveration. This is the tendency of autistic folk to think about something non-stop and be unable to change our focus. I try. I keep myself busy so my waking thoughts HAVE to be on something else. I started a doctorate program so I’d always have something to work on. I have two kids to focus on.
But it’s the dark moments before sleep or in the shower when I can’t focus on something that get me. I haven’t been able to so to sleep well for many nights because as soon as my brain is not focused on something specifically, it defaults back to the issue.
Sometimes perseveration is fun, like on electric cars or sustainable agriculture. Sometimes it's not, like on politics or people.
In November 2020, I posted in social media about the warning signs of abusive relationships and removed my post because someone didn't like my pointing out abusive behavior they were engaging in and verbally came after me. I am perseverating on abuse and re-living the abusive relationship I was in because of that individual's actions. This is called being triggered, although I dislike that phrase.
I cannot sleep well. I can’t engage with my kids purely. All I can think about sometimes is how scary people can be and how unwittingly one can stumble into a relationship that destroys them inside.
This is PTSD compounded by autistic perseveration, which is being triggered for me because I can see it happening and I have logical solutions that are unwelcome. I keep spinning my wheels by problem solving all sorts of solutions that the person doesn't want. I go through diagnostic steps - paranoia, stalking of ex, delusions of persecution, isolating behavior. Not good, friends. Not good. No one wants to hear it, but I can't stop my brain.
Let me share how it started for me. I can’t speak for anyone else.
I’ll call him “C”. We were each other’s first love. We were young. Neither of us had healthy role models to draw from of what loving relationships looked like and neither of us had been taught about healthy relationships. All they teach in sex education in school is how babies are made, not how to be emotionally and physically healthy in sexual relationships.
Abuse starts small. It starts with things not worth making a big deal over. A little discomfort, and when addressed, C would say; “please, don’t you love me?” and continue. He wanted me to spend all my time with him because he loved me so terribly much and “couldn’t bear to be apart from me”. He didn’t like being with my friends, because they didn’t like how affectionate (physically controlling) he was. He effectively talked me into cutting out my friends and family from my life without ever stating it that way.
Below are the early warning signs of abusive relationships:
Let’s be clear, abusers are never up front about this stuff. They’re not going to say “hey, I’d like to isolate you from your friends and family, cool?” They’re not even doing it intentionally. That’s the kicker. There’s no ‘How to be abusive 101’ class these people are all taking.
It’s human nature that you love someone and you want them all to yourself. The abusive part is not caring that it’s not healthy for your partner. Not caring that they benefit from their family and friends. That’s why these folks can walk the abusive path. They hurt you and know it, but don’t care because they’re selfish. Then the trick is to get you to stay.
C lavished me with affection and let me into his innermost world. We were in love. He adored me, and I him.
Below are common forms of abuse and examples for each:
The physical discomfort turned to pain. During this time, he would make public demonstrations of love and affection and when we were alone would be mostly sweet and just occasionally would say something that was demeaning, belittling, or a personal attack and then would say, “but I love you so much anyway!”
As he increased the ways he hurt me physically, he increased the ways he debased me mentally. He insulted me and made fun of the things most core to my being. Then he would hurt me. Then he would say how much he loved me and wanted to be with me forever and cuddle with me for the rest of the night.
It’s a mind-fuck, y’all. That’s why people don’t just leave. It’s confusing as hell.
I'm hoping that publishing this lets me sleep better and shower without being preoccupied by abuse. Maybe it will, and maybe it won't. The world is big and scary and there's not a lot I can do about it but write.
Below are the stages of the cycle of abuse:
If you or someone you know experiences these issues, I encourage you to get professional help. Talk to a therapist to get an objective perspective on your life. You can always chat or call the National Domestic Violence Hotline at 800.799.SAFE (7233).
The Facts About Domestic Violence, Doorways
The Help Guide on How to Get Out of an Abusive Relationship
Leaving an abusive relationship, US Dept. of Health & Human Services
How To Help A Friend Who May Be In An Abusive Relationship, One Love
CA.gov Crisis counseling and support
‘Am I in an abusive relationship?’ quiz
Domestic Violence Organizations in California
Domestic Violence Support Groups
California Court information on domestic violence and restraining orders
5 Facts Everyone Must Know About Domestic Violence, Psychology Today
Below are things you can say to someone who says they were abused:
Socialism, Let's Do It, Please?
by Lisa Macafee
I have a problem with perspective taking. It’s an autistic thing.
For example. I assume that everyone who passingly knows me, knows that I have a deep-seated conviction for socialist ideals and social justice. It’s not like I have it tattooed on my forehead, so many people don’t know this.
You could say that socialism is a special interest of mine. I cannot fathom how people don’t see this as the objectively superior economic system with which to distribute wealth.
For anyone who doesn’t know how socialism works, it gives to each according to what they need. 40% taxes on most and those who make over $200,00 are taxed almost everything in surplus of that.
This pays for free medical care for all, reduced housing costs, free public transportation, free college and university.
There are still wealthy and less wealthy folk, but it’s a difference of one nice house, a timeshare, and three nice cars instead of 16 nice houses and 34 nice cars.
At the point of wealth inequality that the United States experiences, I’m tempted to root for a French Revolution style change! No one deserves, needs, or should have so much when children go without food or heat in the winter. No one deserves such excess when children suffer. Everyone should have a nice place to live, and I have no problem redistributing wealth. Yes, I would lose some of my wealth. No, that does not bother me.
100% worth it. Because. Crime is dramatically reduced when people aren’t struggling to make ends meet and failing. When people have opportunities to go to school to get a career they enjoy and not be forced into indentured servitude to do so. When the edge of desperation is removed from people’s lives who choose between dinner and heat tonight. Things… are better. Teen pregnancies decrease. The state pays for rehabilitation instead of prison (which reduced recidivism and increases productivity).
Poverty. Does. Not. Exist.
I remember my mother being angry and sad that my brother had turned on the air conditioning in summer. It would cost almost $20, she said, aghast after having worked until 2am the night previous.
I remember my father drinking himself into a stupor every night because he couldn’t provide for his family in the way he had been indoctrinated that he should.
I remember my mother taking me school shopping for the new year and spending $100 for clothes and I could see how proud she was to be able to do this.
I remember my mother teaching us how to collect food from the dumpster in back of Long’s Drugs that wasn’t “bad”, it just wasn’t “best by” anymore.
I remember learning to sew so that I could make my own clothes.
I remember getting a job at 15 and working full-time at 17 to be less of a burden.
I remember when my first friend committed suicide because they couldn’t get a job that made them feel competent. I remember when the second friend died of a heroin overdose. The third friend died in a dangerous job accident he had because he was a felon. The friend who was blinded in a drug-related accident.
I remember too much pain and suffering from being poor.
I remember thinking that everyone knew all this. I still think everyone knows all this. Of course, they didn’t and don’t. Perspective taking.
Then I discovered socialism and that there were countries that didn’t allow their people to live with such pain. HOW COULD WE NEGLECT OUR OWN?! I didn’t understand how there could be a way to avert the suffering of children, and we just choose not to do it.
Selfish. Mean. Cruel.
In college, I chose to study abroad in Sweden (paid for with student loans – best choice ever!) so that I could live in a socialist country and see if it really worked. I fell in love. If it wasn’t sub-zero for much of the year, I would probably have moved there. Socialism worked. I took the free bus everywhere - most people did. It was clean and safe and no one understood why Americans felt the need to drive their own car places. I asked people about their taxes and housing costs. I asked about poverty, to which they wrinkled their noses, as if I’d asked them about public executions (they don’t have poverty like we do).
There is a better way. We can take care of one another. Please, let’s do. Children haven’t done anything to deserve the horrors our society inflicts on them. Let’s be better and do better.
For anyone wondering, it has not always been this way – things have changed dramatically since the 1950s when top US incomes were taxed 75%
The poorest have less than nothing while the wealthy have more than they anyone could ever need.
When viewed in fifths, you can see how people below 80% would be largely unaffected by the increased taxation of socialism, and how the last 1% has almost 40% of the nation's wealth.
I am adjusting to having fibromyalgia.
By Lisa Macafee
Fibromyalgia occurs most often in autistic women survivors of sexual violence. If someone tells you they have fibro, there’s a chance they are also telling you those things.
Doctors still can’t really define fibromyalgia, but basically our brains, under too much stress for too long, mis-wire sensory signals as pain signals, so things that normally are not painful, are.
In 2020 I started seeing all kinds of doctors to try to help me get my life back. I was getting migraines 3-5 times per week and had pain and fatigue that made it difficult to do anything and was only able to sleep 5-6 hours per night before waking up in pain, usually also with a migraine.
For those who don’t experience migraines, they are an increasing headache and mental sluggishness that rises eventually into chronic vomiting. Basically it feels as though my skull in in a vice that slowly compresses until my cognitive ability declines into mumbles and madness. Without a Sumatriptan prescription, I would be on disability, unable to work. Thank you modern medicine!
When my father died in May, I thought I had covid (I did not), because I was so fatigued and in pain that I couldn’t even sit in a chair for more than an hour or two – I had to lie down for the majority of the day. It turns out that fibromyalgia “flare-ups” are an awful lot like the flu with body aches, pain, and weakness. Flare ups are most often brought on by stress, ha ha, as if the life stress is not enough, your body shuts down.
For me, the weird fibromyalgia things that cause migraines (in addition to typical triggers) are wearing clothing on my upper back and having too much hair. Yup. Sounds like a lunatic talking right there, but here we are.
I have re-arranged my entire wardrobe. I’ve bought super low-neck shirts and wear them backwards or cut the backs out of my shirts. Every so often I decide that this has got to be unreal and try a “normal” shirt and get a migraine within two hours of wearing it.
I started cutting my own hair. I shave the bottom half off and have started cutting the bottom off a ponytail to keep the rest short. I know when my hair gets too long because I start getting migraines every day, as happened to me this week (I cut my own hair yesterday and feel much better – less weight pulling at me).
I started getting a monthly Emgality shot that prevents most migraines except for the weird fibromyalgia ones (shirts and hair).
I was prescribed a light muscle relaxer to take every night before bed and it allows me to sleep through the night without waking in pain or migraine, allowing me to get enough rest to feel better and not hurt everywhere the next day.
These are huge victories. I still have one or two migraines per week, but compared to 66% of days previously, it’s awesome!
I am learning to give in to the weirdness of fibromyalgia and have felt a lot better for it, but it’s a lot of extra layers of bullshit and I’m tired. I will likely be disabled enough in the future that I am unable to work. Chronic illness is for suckers, don't get one, okay?
PTSD Is Annoying
by Lisa Macafee
I have a smidge of PTSD from my first two serious relationships that gets triggered by unexpected things. It was 20 years ago and I’ve been in almost a decade of therapy and it still pops up an gives me insomnia and angst for a week when activated.
One early red flag is one partner trying to separate the other from their family and friends. It’s not overt or intentional – it’s not like anyone goes down a checklist on how to become abusive. It seems sweet at first. Things like “move in with me, I can’t stand sleeping apart from you anymore” or “can’t you cancel just this once so we can spend more time together?” or “I love you so much I don’t want to share you tonight!”.
The thing is though, most people need their family and friends to be healthy. We cannot fulfill every single role in our partner’s life (lover, friend, confidant, therapist, support, humor, energy, venting, etc) and have that go well. We need other people because nothing in any relationship is ever perfect and we need outside help when things are amiss.
Otherwise your whole world tilts on its axle and people try to kill themselves when they should have gotten a coffee with a friend and some perspective. I’ve been in both types of relationships, and let me tell you, the latter is way better.
Abusive relationships often start out good and healthy, but slip into abusive patterns by not stopping the warning signs. No one wants to be abusive, but if neither party has been in a healthy relationship or had open loving role models, how do you know what healthy looks like? I dated “C” from age 17-19 and “B” from 20-22. One right after the other. None of us knew what healthy communication looked like or how to do it. Autistic folk are much more likely to be in abusive relationships because we fail to recognize the red flags or emotional cues.
“C” in particular was extremely romantic, given to chalk drawings outside my window and scavenger hunts for love notes. The first year of our relationships was great – we both slowly separated from family and friends because we were “so in love”. The second year was very painful. He was dealing with burgeoning mental illness and I knew I could be his rock to see him through. I gave everything of myself because I thought that’s what you did. He took it because I gave it and he loved me. He asked for more and started hurting me. I was still trying to perform some warped gender role of loving nurturer even as he hurt me.
When he finally left me, it was because I had become so pathetic I was no longer the person he loved, I had designed myself up to be whatever he wanted, whenever he wanted it because I thought that’s how love worked. I have never heard of people setting boundaries in love. Cinderella and Ariel seemed perfectly content to leave their entire worlds for their men, after all. Sigh.
After being dumped by the “love of my life” and thinking I would never find love again, I rebelled against everything feminine I had pushed myself to be for “C”. I designed and got a back tattoo inked (“C” said tattoos were white trash, even though I already had two). I cut all my hair off, dyed it neon orange, and got a facial piercing (“C” said only “whores” did stuff like that). I reclaimed my body as mine in the only way I knew how – by changing it so he would not recognize or want it anymore. I made myself as ugly as possible in his eyes so he would never be tempted to take me back. In this way, I was protected from him.
Turns out, some guys like that sort of thing. Broken, angry, and so, so sad. I started dating “B” after about a solid month of lying on the floor crying whenever not at work or school (thank god I kept myself attending school and work)! “B” was also broken, angry, and so, so sad. We were perfect. We’d both been with someone who hurt us (hurt being a verb in this sense). But neither of us knew how to have a healthy relationship.
We had sort of the opposite from my relationship with “C”. I drew boundaries and kept my sense of self. He didn’t. He wrapped his entire world around mine. I took my work responsibilities seriously. I managed a comic book store, it was the height of my dreams at 21! Problematically, he saw me leaving the back office with a man at work and assumed, not that I was conducting interviews in hiring new staff, but of course, that I was conducting an illicit affair with this dude in the back office. Bruh.
If we had kept our social networks and family ties, he might have called one of them. They might have talked him down. Instead, he went home to our apartment and tried to kill himself so I would find his body after work and regret cheating on him.
Joke’s on him because I wasn’t cheating and found him before all the pills and alcohol finished their work. Although he was impressively foamy and not seeming to be breathing, he was alive when the ambulance brought him to the ER and was sparky enough to tell the doctor when he awoke that I had tried to kill him. Good times.
In retrospect, I am so very lucky because most people in those relationships don’t try to kill themselves, they kill their partner. I am so lucky. I am so lucky. “I am so lucky” becomes the mantra I repeat to myself when not able to sleep and thinking of all the others not so lucky.
I obsess about my loved ones’ relationships and think about all the ways that their relationships seem just a touch unhealthy lately. I think of all the things I could say but won’t because that’s rude. I hate that I live in a neurotypical world where there are all these social rules that seem so dumb to me.
Mostly, I lie awake and wonder how two people that love each other can hurt each other. I wonder that it seems to be in our natures to corrupt good things and that making a relationship work is HARD WORK. Clear and open communication to keep relationships healthy is tough. I don’t like having to set boundaries or talk about feelings and respect.
I wonder about “C” and “B” sometimes. I feel as though if I had only known about healthy communication, I could have saved us all from going down those dark paths. I wonder if they lie awake at night terrified of falling into old habits from their first relationships, too.
It’s been 16 years since the end of my last sick relationship. The fact that I’m still dealing with the trauma seems insane, but those years were some of the most formative in my life because of the sad intensity. My relationship with my husband and children suffers. Ryan will say or do something normal that turns me to stone.
I wonder about people who didn’t have such troubling experiences. How did they learn to communicate? Did their parents model healthy communication and they just knew how to do it? People with no trauma are marvels to me.
I feel so unlucky.
But I am so lucky to be here.
Why Domestic Violence Victims Don't Leave
Leslie Morgan Steiner was in "crazy love" -- that is, madly in love with a man who routinely abused her and threatened her life. Steiner tells the story of her relationship, correcting misconceptions many people hold about victims of domestic violence, and explaining how we can all help break the silence.
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.
by Lisa Macafee
Word just came out that Governor Newsom is mandating public schools to stay closed until counties are not on watch for COVID-19.
While some of my teacher friends rejoiced because they will not have to be in contact with students, I spent a good long time last night crying.
I understand that COVID-19 presents serious risks and that steps need to be taken to minimize transmission. Our district had planned on a hybrid reopening that I feel would have allowed enough students to stay home to allow for precautions to be implemented.
It bothers me that the state does not seem to realize that many parents will now be endangering their children with no other option. Most of the guides assume that working parents can help their children with schoolwork around their own work hours, which also assumes that their children are over the age of 12 and can safely look after themselves while their parents are working.
“If schools don't reopen, will parents have to choose between jobs and kids?” Many parents don’t have the luxury to be able to quit their job without also losing their home, car, and needing to go on state assistance. So we are then forcing working parents to neglect their children, leaving young children home alone, or sending them to family members, or in very unlucky situations, sending children to un-trusted acquaintances. Rates of child abuse (including sexual abuse) are already rising. They will continue to rise.
Teen Vogue wrote about how “Distance Learning During Coronavirus Worsens Race, Class Inequality in Education”, but people seem unconcerned.
The Los Angeles Time said that “We can’t reopen the economy without child care”, but the economy is reopen for the most part. Being in a capitalist country that is not ready or willing to support those who cannot work in times of distress, we have to work.
I have been working from home. My employer has graciously said that I can work while caring for my kids, but how can I, really? My kids are 3 and 5. They and I are autistic. It has been okay for the last few months because my husband is a teacher and has been on Summer vacation and he has cared for the kids while I’m working. He is going “back” to work in August and will be expected to maintain a rigorous online learning environment, which will take a lot of work to make online learning meaningful for 8th graders.
When we are both working remotely from home, how the hell are we also supposed to care for our kids and ensure their learning? Our kids will be neglected.
We are currently the ones responsible for every single aspect of their growth and development. This is not normal or healthy for kids. Especially autistic kids.
We physically can’t provide speech-language therapy for my son who has communication delays, or occupational therapy for both to work on delays in fine motor control.
We don’t have the energy now to be able to provide all their online schooling needs. When we’re both working full-time with the kids running around in our hair, it’s an impossible situation.
I am already struggling with autistic burnout from too much stimuli. There are too many things happening at once. I can’t keep track of them all. There are too many noises happening from too many devices and too many people needed too many things from me at the same time.
Do I attend my screaming 3 year old who hit his head (again), or my 5 year old who wants apples sliced not whole, or my student on zoom who I am being paid to help? Which one is the most important?
Most nights after putting the kids to bed at 8pm I need to lie down. My body seems to cave in on itself, forcing me to stop. Some nights I can’t even talk to my partner because my brain is all done with peopling. Too much.
Being an autistic parent is hard enough. Being an autistic parent in COVID while working from home with my kids here and the expectation that I should be home-schooling them is impossible. My health is failing. Stupid fibromyalgia is making me unable to function anymore.
Here’s the thing.
I’m one of the lucky ones. I have family I can lean on if I need to and financial stability.
I will be okay, and my kids will not be physically abused. They’ll get way more screen time and way less socio-emotional growth than they should, but they’ll be okay.
Lots of kids won’t be if we don’t have school in Fall.
We need an on-campus option to care for our most vulnerable students.
Not for everybody, but for our students whose parents work and are unable to care for them at home.
For some special education students whose parents are unable to meet the needs of their children by themselves.
We need to think beyond what’s best for our own individual families and think about those most vulnerable.
One last story. When I was a young person, my mother worked about 70 hours per week to pay our bills. My father would come home and be responsible to “watch” me. But, my father was an alcoholic. He would come home, get drunk in the garage, watch TV, and pass out.
I cannot tell you how quickly I found (dangerous) ways to get out of the house. I dated older guys who had cars so I could get out. I started working at 15 to save for a car to get myself out. I started working full-time around 17, just to be out, really. I hung out with anyone who would pick me up and get me out. I had a severe drinking problem from age 15 through college because being home was untenable.
If I didn’t have school at this time, I don’t think I would have made it. Literally. A couple of my teachers gave me a couple of compliments that I built my life around. They may not have meant anything by it. They may have made the remarks offhand. But my life is built around being a “Deep Thinker” (thank you Dawn D’Amore) and being “good at Psychology” (thank you Art Jenkins). Without these two things, I very well could have ended up like some of my other friends. Good friends and good people who are dead.
Protect our kids. All of them. Not just yours. Please.
by Lisa Macafee
I am writing this with a heating pad on my shoulders, having already taken an Aleve (do these things ever work?), and have had a migraine for the last four days running. I have a generalized pain, stiffness, and soreness in my shoulders, upper back, and neck that just doesn’t seem to go away and slowly builds as the day goes on to a migraine. This is Fibromyalgia for me.
The Mayo Clinic says “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” Migraines “can cause severe throbbing pain or a pulsing sensation, usually on one side of the head. It's often accompanied by nausea, vomiting, and extreme sensitivity to light and sound. Migraine attacks can last for hours to days, and the pain can be so severe that it interferes with your daily activities.”
As far as I can tell, fibro happens most often in autistic individuals. When I was being diagnosed, the Rheumatologist was hemming and hawing over my chart until I mentioned that I was also autistic, to which he concluded quickly that I have fibro. Because apparently these symptoms + autism = fibro. Our neurology seemingly misfires and sends signals of perception down the wrong wires, things get sent off incorrectly, and we have pain and exhaustion instead of noticing that we need to change positions or are cold, for example.
The pain. It’s in my shoulders almost constantly and while normal things like hugs don’t bother me in the slightest, wearing any kind of clothing touching my upper back, neck, and shoulders will 100% result in pain, disorientation, and migraine.
That sounds silly even to me. How could wearing a shirt cause migraines? I don’t know, but what I can tell you is that I’ve started cutting the necklines out of all my shirts and wear them backwards. Today, for example, I was wearing a backwards shirt, but the back wasn’t quite low enough and I started getting pain in my shoulders and neck. I took an Aleve and used a heating pad for 2 hours and cut an extra half inch off my shirt neck and I was able to curtail the pain and not get a migraine.
The problem is that I can’t always do this. At work, I can’t always cut the neck out of my shirt. I’m supposed to dress professionally, after all. What kind of professional wears all their shirts backwards and cuts the backs down to their bra straps with scissors in the restroom? How insane do I sound to you? I sound pretty crazy to myself! If I didn’t live with this, I wouldn’t believe it either.
Fibro-fog is a thing as well. When I am feeling unwell, I get confused and can’t think straight. I don’t have enough spoons or spell slots for basic daily living skills. My cognition gets destroyed by migraines as well. Most questions are met with a “…what?” response making me seem either remarkably unintelligent or uncaring about others.
I have tried almost every prescription and procedure short of jaw reconstruction that I have been offered by the series of doctors, specialists, and experts, all to no avail. Cymbalta helps with pain but caused me to be so fatigued I couldn’t get out of bed. I had acupuncture, which was painful and did nothing to help migraines. I had Botox injections in my shoulders and neck, which, while painful, really didn’t seem to affect migraines. I tried Topomax, which lowered my blood pressure to the point that I passed out in the shower(!). I tried Pamelor and it gave me insomnia so badly that I was getting a migraine every day due to sleep deprivation. I even tried taking Guaifenesin daily and removing all salicylic acid from my diet for a couple months as per the Dr. St. Paul Armand protocol, but that increased my migraines as well. It’s not like I haven’t tried to get better.
I’m currently doing very small amounts of yoga and using the elliptical morning and night because exercise is one of the keys to fighting fibromyalgia. But exercising too much brings on migraines and fibro flare-ups. Lol. Have to find just the right amount. I am the perpetual Goldilocks, but no porridge is “just right”.
I am growing increasingly frightened of my biology. I am having less and less days not requiring Imitrex to knock out the migraine, and I am more often requiring double the dose of Imitrex that I used to need to stop a migraine.
What happens if I don’t take an Imitrex? Eventually the pain and light and sound sensitivity builds to the point that I start vomiting from the pain… which makes the migraine worse, leading to nonstop puking and a visit to urgent care. I try to avoid those. 😉
What else triggers migraines, you ask? Any more alcohol than ½ a drink, too much sugar, not eating regularly, stress, exercise, dehydration, heat, sun, air conditioning, wind, jaw tension, sleeping wrong (on my stomach, side, or not perfectly aligned flat on my back), and more!
“Living” with fibromyalgia is difficult because I don’t “look” sick, much in the same way that I don’t “look” autistic. People doubt what they cannot see.
My kids are disappointed with me when I’m lying on the floor holding a pillow over my eyes and won’t come play with them. My husband gets frustrated that, very often, the childcare falls on him because I can’t process or parent.
My ability to work suffers, or I suffer to work. I take more Imitrex to be able to function at work and fall apart and become nonfunctional when I get home. This is not sustainable. I feel like a train slowly rattling off the track and not being able to stop it.
If I’ve ever come off as bitchy or uninterested, I apologize. I am in pain so often and I mask it so much that sometimes I forget to tell people and then I come off wrong.
I’ma keep fighting, at least fighting seems to be in my genes along with the rest of this crud. I refuse to give up hope. One of the next specialists I see will help me, someday!
by Kai Pretto, July 9th
How many lifetimes have passed
while I wasn’t paying attention?
The sound of voices I have not heard
in years ricochet through the hallways, catch
around my ankles in my sleep. I awake
with familiar feelings in unfamiliar places, the screech
of tires in the middle of the night. Some days
I am unsure how I ended up
thousands of miles from where I started--
how uncertain, how unpredictable
it all has become. I have sloughed off
the skin of who I used to be, the endless
dust of aging. I am peeling off
the layers until I get to the middle:
at the core center
is the solid metal sphere
no amount of meditation can crack--hovers
and bobs and manifests
in violent tumults
crashing long into the night.
I learned to speak before I knew
what words meant, rolling around the sounds
because they were pleasant in my mouth.
I have become astute
at finding the right ones for every mood, every room--
a catalogue of scripts so complex
they look like conversation.
Can you tell me
what it means when someone says they love you
and then they break your heart? When their mouth
is an empty oh and their eyes are wildfires
you will never put out? When their eyes are vernal pools
full of dead shrimp? When their mouth
is a watchtower, a searchlight, a prison?
I am looking for something
warm and round I can hold
in my hands
and call mine. I am searching for the feel
of winter mornings at seven, everything
so hushed and here I am cradled
inside of what has been found.
June 30th, 2020, Ty Lynn Salis
As I write. Its just a little cold for me. Not to much smell though, so I am not being bombarded with eu de whatever. I am sore in my chair. No shoes, dear God please no foot prisons for me. Have to tell hubby to quit talking because I want to write. Do I need loud music to drown out the words so I can focus? I am going to yell and scream now. I want to be able to think about the words on the screen so I can help people understand this. Who and what do I experience as an autistic woman? And that is such a tricky determination that I just wonder about it.
I am an American Southern Woman. Definitely a woman physically. Many a time I have been told I am not lady like at all. I speak up and say things. Almost as if I don’t want to place my filter. It took me many years to use contractions and walk normally.
So, how did I get here? Well lets check the biographical information and see what we have. I was born 7 weeks early and my mother had partial Placenta Previa the whole time. I also was working with intrauterine growth restriction. Because of the placenta previa, I could not grow as I should have. 2 pounds and 4 ounces. That’s the same size as a 26 week baby, and I was born at 33 weeks. I had constant apnea and needed little jolts all the time at first to remember to breathe. I still have sleep apnea. I never grew to catch up to my fellows. I am 5 feet tall (154 cm due to a fraction of an inch extra) and that’s all I’ll ever get. I was always a little behind. Particularly in motor control, sensory seeking behaviors (though not labelled as such in 1981) and socially. I had a brain scan in 1981 when I was 4 years old and it showed problems. Not structural, but in the patterns of transfer through it. I got an diagnosis of ADHD in 1981 because autism and Apergers were not available for children who could talk and learn back then. I was always an outcast in school, always a teacher favorite yet annoyance at the same time. Never could achieve anything that didn’t come instantaneously to me. And in later years, if I knew more than my teachers, I would correct them, in front of the class. At 42, I know that was not the smartest move, but bad facts and incorrect figures enraged me. I had obsessions through the years. Topics I studied to death, figuratively speaking. Figurative speaking is still a challenge when others use it, but I have learned how to use it, somewhat.
I had obsessions with GI Joe and transformers. I was obsessed with Rainbow Brite and Strawberry Shortcake. Then I discovered dinosaurs. Later on within dinosaurs, I discovered Human evolution and Geology. Those are two topics I still stroll back to regularly today. 35 years later. I wanted to be a Geologist from the age of 11. But mathematics is a huge weakness for me so it never happened.
I made it through most of college, though when I lost my way, I failed out. I have never got back on track to anything real. I probably never will. I do not like writing formal papers where I have to do footnotes, in line citations, etc. I hate stopping my train of thought to switch to another task of getting those notes etc.
For the next 20 years or so I went through a series of abusive relationships. As I am, I am very forgiving of peoples difficulties, but it lets people take advantage of me. I’ve been cheated on, infected with STIs while faithful, drugged, abused, raped multiple times, and almost murdered by strangulation. All this by people who claimed to love me. I always forgave the boundary violations because I couldn’t see where to have those boundaries. The old illusion that there shouldn’t be boundaries or secrets between a couple harmed me greatly. Everyone assumed I should know. Everyone assumed it was instinctive. I was 36 before I learned crossing my arms over my chest meant I was closed off. I did it to give my arms a place to be and sometimes to cover my hypertrophic chest.
I was 30 years old when I found out I had Asperger’s syndrome. That was still a diagnosis in 2008. It explained SO MUCH. My innocent nature, my sensory issues with food, so many things. It was a relief in a way. I could explain when people said I was too weird, too off, too much that I was me. I could explain why somethings were not the perfect vision of femininity while I had strove for that my whole life, yet failed.
I turned to the web for more information. I voraciously devoured blogs, videos, articles, and what books I could find on the diagnosis and its associations in psychology. I was obsessed for years.
I am going to have to lotion my lower legs and feet. The skin is starting to feel all not stretchy and not flexible.
Back to the tale now. I was obsessed with understanding the problems of how my mind worked. For awhile. Once I had a better understanding of ME, of how my mind processed everything, I came up with a fantastic description.
I do not think in audio. No inner monologue rules me. I see my mind like a 1940s aircraft hangar. There are tons of books shelves lined with books of memories, facts, trivia, and information. There is a large seating area for resting. I have a huge screen on one wall that has imagery and words that are what I am thinking. There is a stereo with music. In another section is a huge stack of servers and an access computer where I access all my thoughts and information. To describe this, I see myself at that server typing everything a fraction of a second before I type on the real computer so I can see sort of how its going to look on the paper. On the ceiling of this brain room, are RULES. All the rules for every social situation is posted in huge print across the ceiling. If someone says something political that I can not stand, I say or do “X” almost in a flow chart like pattern. But its written in a list with a list of lists and a cross reference list so I can extrapolate.
Social rules are SO confusing. I mean, how do you automatically know what to do in a situation? How do you know the proper response? You can not use a genuine response in 90% of situations because what’s real and what’s allowable are totally opposite. Social rules are social lies people use to manipulate each other. Its almost as of being normal in the social world is to be a liar. I hate lying. You have to keep track of it. I hate lying because it means you are not telling the facts. And add feelings into the mix and the whole world gets to the point where its time to implode or explode. I hate it. I avoid a lot of socializing with people outside the Autistic community. Most of my close friends are autistic or subclinical. Subclinical meaning they are autistic but their functionality in society is so efficient they can’t get a diagnosis because they don’t meet some ephemeral standard that means they are expected to function fully with no difference.
I prefer autistics. Honesty, real information, understanding of energy limits for social masks, total understanding of sensory limits, and the jokes are so good. Oh, did that surprise anyone? Autistics can be very funny, very sarcastic very allegorical, when they want to be. It can be off to others though so we generally don’t reveal it since it doesn’t fit the social lies and social standards artificially imposed by a society that does not allow for the real person to be exposed. We are literal as it gets a lot of the time when its serious. Try to say the grass is blue and I will argue to death its green because guess what, I looked and its green (or brown, or yellow depending on weather or season).
Am I bitter, perhaps a little. This world is not built for us. There is no help or support for us unless we are nonverbal or totally nonfunctional and when that happens, the autonomy is removed. Frequently, when the word Autism is applied, suddenly the outer world assumes you are always the one who is wrong in any situation. Your death means less when your murdered because you were “difficult to deal with” or because you refused to bow down and be someone else. Maybe its because certain textures or flavors, sounds or tastes grate on your nerves like cheese on a cheese grater until you explode or implode.
I do have sensory issues. A lot of them really. When I walk into a store, the smell sets my whole mode. I hate lavender. Stop using it world. Its cloying, really. I can not eat jello, oranges, or pineapples. When my teeth come down, it just makes me want to gag. But I love the juices or drinks made from them. I can’t eat the fat from the outside of meat. If meat looks even a touch pink, its not going in my mouth, I’d rather starve to death. Bodily sensations totally disrupt me. Pain, its nothing (and I have chronic pain to a degree) but itch, and its all over. Or thirsty. Can not do thirsty for even a minute or two without having my functionality and focus out the window. I hate shoes and socks… I can’t stand them. I will wear sandals and flip flops until its below freezing to avoid containing my feet that way.
I have several of the medical and psychological issues common with people on the spectrum. I have the digestive issues. Food sensitivities that are a pain to work around. Every single medicine I take for any of the issues just makes the trouble worse for me. I just live with it. I avoid the foods that set me off if I can and otherwise I choose to suffer since the side effects are worse than the initial suffering.
An ordinary day includes being awakened too soon by my 5 year old autistic step son. Talk about rough since he jumps his full 56 pounds of weight onto me. But he still doesn’t understand and probably won’t for awhile. Now since we are meat eaters as well as veggie eaters, he is gnawing on my hand. My son contorts himself in different ways all day long. He is definitely a sensory seeker, not an avoider.
Is that skin on my ankles still doing that thing? Damn. Are they swelling? No? Then why? Aw jeeze.
We kind of ramble and hang out until breakfast. Then we do homeschool app for my son and I get on Facebook or play Sims 2 (My current obsession is building houses by theme there. Current theme is nice clean homes in pods due to environmental catastrophe). My husband heads off to work in the other room since during the pandemic he is working from home. I do not work so we don’t spend as much in child care as I make and its easier to go back to work as a woman after staying home than as a man. When he works, we head out to take him to work. Then lunch, any chores I can actually remember to do instead of having them bypass. Damned executive function failure. I know I need to do those dang chores. I want to do them. They just don’t get done sometimes. Then we have supper and continue the same things until bedtime, which turns into a super battle with the 5 year old.
Hubby has autism too. Poor man was diagnosed in the army and lost the career he really wanted. Currently he is a bank fraud investigator and a lay speaker in the church we attend. He and I seem almost perfect. We balance each other and understand when each other is having a challenge. He can socialize and understands the rules. He is very empathetic with others and understands why they do the things they do better than I do. I just don’t care anymore because they don’t care about others.
There are other issues others never really contemplate. Autistics and relationships, Autistics and sexuality, Autistics and Gender Identity, Autism and legal autonomy, Autistics and parenting. I could write whole multipage essays on these topics.
As a final exercise, I will identify me. I am a high functioning, female presenting, cis gender Autistic in a heteronormative monogamous relationship. Both my husband and I are pansexual and sapiosexual. We both live below the financial level we should have achieved but failed to, due to not having the needed supports in place as children and young adults. We share similar political leanings and ideology, though I am more moderate than he is. Our religious beliefs are not the same but fall into a similar category but that is not traditional in any sense for either of us. He is 10 years younger than me and I love him to the point I would kill to protect him or his son who will some day be my son legally. We don’t care if someone is Autistic, neurotypical; straight, gay, somewhere else; conservative, liberal; religious, spiritual, or not; Male, female, somewhere else; cis gender, transgender, no gender, all sorts of other places there. We don’t care as long as you don’t hate on me for my choice and don’t hate on others. Try to eliminate assumptions, ignorance, and hatefulness and we are good.
So this has been a walking window tour of my brain, life, and how things work for me. I hope this does provide some insight into my life, my autism, and me.
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.