I don’t put dates on my diary

So, I don’t put dates on my entries for a reason. I am unreliable.

It’s been probably the hardest thing to come to terms with in my life, considering that reliable is always what I have wanted to be.

Reliable. Forthright. Accomplished. Thoughtful.

Which makes me sound like some Jane Austen man-that-you-settled-for-but-was-really-so-much-better-than-the-rake… Basically, Colonel Brandon? I could do a lot worse than Alan Rickman. I actually love Alan Rickman. Damn you, Jane Austen. Right again.

The point I am making is that I worked very hard to scrub the dates from any blog that I write because there are seasons where I am just gone from the world. It’s been a couple of years since I wrote here. And there was an absence before that as well.

I’ve been through a lot. New diagnosis, new turns, new adventures… New material? Perhaps. But I am getting to visit my traveling Aunt and Uncle today. He has a wonderful blog, “Wheelie Out There” that relates the life of a wanderer from a wheelchair point of view.

As it was in the beginning he inspired me to write. Write something here. Just to start again.

Because “it will go wrong.” Seasons will go wrong.

And you have to adapt.

Uncomfortably Numb

I’m having a bit of a med crisis…

Essentially, my meds were starting to wain in their efficacy so I doubled my dose, and because of that bit of brilliance, I am having horrible side effects. Starting with, I can’t feel my face. No joke. Actually, that’s not even right. Let me amend that, I can only feel pain. Pins and needles pain, in my face, hands, and feet. So, as the doc says, I stop the med.

Now, I still can’t feel my face and I am going through a blowback of symptoms that the meds usually contain. Dude. It’s a mess. I’m a mess.

It’s appropriate that in this med crisis, the existential dread comes creeping in. Let’s get real, she didn’t creep. She leapt into my numb tongue face and blatted at me like a goat. What a bitch…

Existential Dread. It’s important to know what that feels like and what to do about it.

What does it feel like? For me, it’s the feeling that nothing I do will ever matter. That it’s too late. I’m too old. (I’m only 36.) I should just give up, and stop trying. Existential dread. Bitch.

What do I do about it? First, you make yourself aware of why the goat lady is at your door. For example, you’re having an issue with your medications. (Ding, ding, ding!) You have just had a milestone birthday. You just had a change in relationship status. You took a really bad picture. I don’t know. The unintended invitation of existential dread, or trigger, is as varied as the dread. But you have to ferret it out if you are going to get her to go.

Then… then…

Jeez, I suppose I am still figuring that out.

At the moment, I am trying to collect all the things in my mind that usually just click for me. Give me that dopamine hit of gratitude and experience. Whether that’s novels, movies, art, family, sex, whatever- I’m looking for my dragons. The things that I usually chase to feel right. To achieve that level of chemical homeostasis in my brain that even meds can’t achieve for me.

Essentially, I am going full Khaleesi, Mother of Dragons. (I didn’t even watch that show. Too much murder.)

Anyway, I want to find my dragons. And then make real world plans to harness those pursuits.

I need to read more. Find more books and don’t waste my time on books that don’t click. Move on and maybe I’ll go back to it one day. No book purchase is ever a waste.

(Except, “The Courage to be Disliked”. That was some ableism bullshit. The only thing I enjoyed was the question and answer structure that I could have got from another more positive book like “The Power of Now”. The message and philosophy was some serious bull excrement. Do not buy. Not the book. Not the philosophy.)

I need to write more. Find a way to focus while writing. More ASMR? More oceans sounds? Less mindless tv watching. Write anything. If not writing, then reading. All good writers read. Anyone who tells you different is wrong.

Paint. Distill the painting process to just what makes me happy. Color combinations. Bah to realism and make compositions based on color and movement alone. Like Paul McCartney. Paul McCartney was a fantastic painter, FYI.

Write more poetry (or maybe just description?) Ok. Sometimes story telling is a bitch and I just want to write some poetry. I am not saying that poetry is easy. Far from it. I am saying that I need to practice. And sometimes practice needs to start with small gains. Like word associations and beautiful phrases.

Like I said in my last post, maybe I need to practice just taking up space?

The first half of existential dread is existential. Existing. Just Exist. And be proud of that alone.

Maybe the biggest truth I have right now… is that I am uncomfortably numb.


The Whole Thing

I’m having one of those days where I am a bit lost.

Like most neurodiverse people, I’ve been masking to survive for a very long time. The question is… how do you stop? And of course, the ever present, “Who am I?”

I wrote a post about inventorying your identity from time to time, with the obvious title of Identity Inventory. I also wrote a post called Who Am I? Same idea. What parts of me are mirrors and what parts are me?

The truth is, it’s technically all me.

I’ve started doing these Venn diagrams of the versions of myself. There’s the me that I am with John, the me that I am with my mom, the me that I am with strangers, with students, with my psychiatrist, etc. etc. And part of that is just social survival, like I said. Neural linguistics. All that.

But it still leaves me a little confused. I’ve seen this fantastic phrase on shirts and stickers-

“I refuse to make myself smaller for you to digest. From now on, you can choke.”

Now, I don’t really need anyone to choke on me. That’s a lot of conflict that I am not ready for… maybe ever…

But I do want to take up more space. I want to be myself, and I want more people to get me for me. Not the digestible version I’ve made for them.

Even writing that was scary. Conflicted, to say the least. I’ve lived a full life making myself smaller. Full, in time, I suppose. But full?

That question opens the door to all kinds of scary things.

And neurodivergent people are not good with scary. Not usually.

But I want more. Maybe, that’s the start to being both full and whole.

Rage Against the Drive Thru

Confession- I called the kid at the drive thru window a dick. John was proud. Me? Not so much.

Yes, he was being a bit of a dick. But I have made it a point in my life to be mindful of things that trigger my rage and anger. To be understanding and forgiving, foster the change I want and all that.

Sigh… This is the part of ADHD that few people talk about.


Not just anger, but out and out rage.

I’m a petite woman with a little voice, so my rage doesn’t look like much. But it feels awful. My large eyes get even bigger and I say things that I always regret.

So, I’ve got to deal- and start again. Or it will snowball into a guilt-rage-guilt-palooza. And I don’t want a palooza. I don’t like paloozas. I’m a quiet gay, like Hannah Gadsby.

This is me– starting again.

Sure, I have a million things to do. My car won’t start. My debit card is frozen because of some weird security nonsense that prohibits overseas purchases. My son won’t let me cut his hair despite his ongoing resemblance to a sheepdog. This DIY project is DIF because it will NEVER END- AND I have to plan for an awesome once in a lifetime trip that is giving me panic attacks because I am a weirdo…

But yes… Me… Starting Again…

Inhale. Exhale. Take your meds.

Start over.

I’m Not Taking your Workshop, Karen

God help me from people’s assertions.

This is what I just wrote in a frustrated facebook post, right after backing down from an argument in a comment thread.

It’s not that I even disagreed with this particular woman’s ideas, it was her assertion that everyone “could do it” that was ruining my day. In this case, it was that anyone could solve their mental health problems, without medication, through making the right choices.

She is partially right. Getting the right habits and coping mechanisms are the majority of the battle, but medication can help you get in the right place to make those choices… not will power, and most especially…

Not. Her. Fucking. Workshop.

The one thing I am taking away from this is to always check my assertions at the door when making any kind of comment or piece of advice, in person, online, whatever form it takes. Assumptions and assertions are the height of arrogance and I want nothing to do with them.

So I did learn something from her workshop pitch, I suppose…

The day you know something for certain is the day you stop listening.

The Accountant

I’m in the middle of watching The Accountant, where the main man, Ben Affleck, is a highly trained autistic batman, or something like it. This most assuredly follows under the autistic = superhero genre, but I’ve never really been against that practice.

It’s not that I want people to think that mathematicians are the only autistics worth keeping. And the trauma that the main character is put through to handle his difference is cynical and a little grotesque.

It’s also not wrong. Well- the high body count is definitely wrong but the father says a line that I find incredibly true. “They don’t hate you or like you, they’re scared of you because you are different. Sooner or later, different scares people.”

Which is of course ironic because different routines, environments, and such, scare us the most. I am always afraid. On some level. Always afraid, even when I am happy and doing well.

This isn’t a comment on my life to say that. I have a wonderful life. But my survival instinct has always been on high. And my awareness of my own difference, even when I didn’t have a name for it, scared me.

Sooner or later, different scares people.

There is another line that Ben Affleck said that I like better though. He said, I have trouble with social situations and talking to people… but I want to. I want to talk to people.

I’m paraphrasing a bit there. He did it better. He is Ben Affleck after all. But I so understand that. I wrote a monologue in my most recent show about the idea of Beth from Little Women being Autistic. I’ll leave it here for you to see what I mean…

You read that, I’m gonna see what happens to Ben.

Beth Is Autistic, And So Am I


You know how everyone has to wear masks now—  to protect themselves from the pandemic. Well— uh— I have had to wear a mask for much longer. 

That’s what my psychiatrist calls it. Masking. 

I watch what other people do and I do the same. So no one sees what I really am. 

My mom calls it being shy. 

My dad calls it anxiety. 

I’m making it sound so mysterious and dramatic but it shouldn’t be. 

It’s just another type of person. 

Beth is one too. Beth is like me.  

Because I watch people so closely I saw all the clues with Beth,  and asked Miss Pratt about it. She agreed. 

  See, they call Beth’s “shyness” an infirmity or disorder.  Turning her fears and timid behavior into a sickness. They still do that. 

Call me retarded—  when the only thing slow about me is my understanding of why people are so mean.  

Beth says about her birthday,

(she has this part memorized) 

“I used to be so frightened when it was my turn to sit in the chair with the crown on, and see you all come marching round to give the presents, with a kiss.  I liked the things and the kisses, but it was dreadful to have you sit there looking at me while I opened the bundles.” 

That is because she doesn’t know what to do or say. So being the center of attention can be a nightmare. The things that come natural to others, we have to learn how to do. These weird rules that all you neurotypical people decided without even talking to each other. 

You have to make eye contact. 

You have to stop playing with dolls after twelve.

 You have to talk to people that you don’t know.

 You have to be polite. 

You have to look a certain way. 

You have to be a certain way. 

People like Beth and I just don’t get the rules that you all have. So we watch, and we mask our real selves, 

so that you won’t see us.

 So you won’t make us uncomfortable. 

So we don’t make you uncomfortable.  

The fear of loud noises was a sign too.

 The way she runs from things that are too loud— She probably doesn’t like things that are too bright, either. She gets headaches. I read that and all I thought was, I put on dark glasses when I get my headaches. 

 They should get her dark glasses. 

People like Beth and I have very sensitive reactions to light and sound because we see and hear things so differently. 

We’re not less, just different. 

 Oh, and the piano—  the piano was a give away. We all have these obsessions. 

Things that make us forget our masks. 

That way we can be ourselves. 

The piano makes Beth look, and act, 

like anyone else. 

And so they see her for who she really is— 

Not just a shy girl who lives in her own little world. 

You know the Māori word for it means, “in their own time and place.” 

Which sounds lovely— and I guess it is because we can see, and hear, and sense things that others don’t. But the truth is we want to be in your world. We want to be included and have friends just like anyone else. 

You think being in quarantine is lonely— you should try being Autistic.

Yeah, Beth is Autistic. 

And so am I.  

Check in, Check Out

I want to check in with this communication modality, aka my blog, because I have been so distracted lately that I have let it fall by the wayside. But that’s ADHD. The key is to come back. To keep trying.

Last post, I told you I was stuck. But by accomplishing a few of my goals, getting my meds in order, and adding a few new resources, I am doing so much better.

First- I finished a show that was giving me so much trouble. I thought it would be easy to write a production where no one touched each other, and everyone was filmed separately.

Spoilers, it was not.

But I finished it. It was another adaptaion. But it was an unusual approach. My mother, for whom I wrote this show, both in dedication and for her school, called it The Breakfast Club and Little Women combined. Little Women Club? Breakfast Women?

I call it Little Women in Quarantine.

More than anything it was a love letter to the teacher in both Louisa May Alcott and my own mother- who is retiring this year after several decades of being an educator. And of course, the thousands of teachers who, like my mother, took this new modality of distance learning and used it to help their students emotionally and mentally survive this pandemic.

I was reading the script aloud over the phone to my mother to help me with some word smithing and editing. (Her first career was in journalism, so she is a very good editor.) And we both found ourselves crying.

Had I a little more of her tenacity brand ADHD and less of my sensory aversive one- I would have stuck out college and become an official third generation teacher. I don’t regret that choice because there are things that she has dealt with that would have broken me– but I’m always impressed with how much she accomplished.

So many children, that were left behind by a system that was intended to leave no child behind, were saved by my mother. Because she made the point of pulling them along into being succesful readers– no matter the work, or the blowback from students, parents, and administrators alike. She was unconventional, and occasionally ruffled some feathers. But like a duck, the majority of the outrage just washed over her and away.

I hate conflict. But her ability to take in that conflict and bulldoze through it to do the right thing… I wish with all my heart that was a trait I had inherited. But since that is not how character works– I will just have to learn by example. Which makes her a whole other kind of teacher.

Oh man, I think I might cry again.

So let me tell you about another teacher that has been helping me so much lately. My new resource for stress and anxiety.

And that is Ediya Daulet.

I discovered her ASMR channel on youtube and her meditations have helped me so much. She has a very calming voice and great content. She also has a very interesting life and story.

I will leave you with one of her videos that has personally helped me check out and relax over the last few weeks which features one of my favorite relaxation sounds- the ocean. Enjoy.

Lazy vs Stuck

So a lot has happened inbetween my last post and now. There was a national election. (You may have heard something about it, yes?) Thanksgiving. Which had some interesting side dishes, like an issue with my medication. A very important medication that helps me be clear in my natural predisposition to be grateful and settled. Which I found to be incredibly ironic, considering the day.

But I don’t want to talk about that. Honestly, I think it’s half the reason I have had the month long absence from my blog. (That and the usual 2020 shenanigans.) I didn’t want to talk about how hard it is to deal with mental health issues with medication, let alone without.

And I won’t even go into the Catch-22, hellhole I am in, still trying to get that medication refilled. Psychiatrist only allows for phone calls as a form of communication, despite having an entire digital system at his fingertips. I have anxiety about phone calls and it takes everything for me to make them. Medication is for anxiety… And the beat goes on.

I don’t want to talk about it. But maybe I should.

I’m stuck. I’m overwhelmed. I’m perseverating in circles.

I saw the best Dinosaur comic explaining that overwhlemed feeling. Yes, it was a comic with dinosaurs. It was shared in my favorite, most useful facebook group- Tracy Otsuka’s ADHD for Smart Ass Women. A friend invited me after she was diagonosed and it’s been the least divisive, overwhelmingly supportive, most useful group I have ever been apart of. Apparently Tracy has a podcast which I need to jump on as soon as I’m unstuck.

Anway, I grabbed a screen shot:

This perfectly describes my situation I am in right now. And as I commented on facebook, I have never felt so seen by a comic with dinosaurs in it.

Being still pretty stuck… I don’t have much more to say than this…

When you feel like you are overwhelmed because you can’t get anything done, and so it all piles up, and you are distracted again and again….

You’re not lazy.

You’re just stuck.

And while our lives may feel like a tarpit, it’s not. We can become unstuck. We won’t petrify.

I hope.

Identity Inventory

We are in the midst of a culture war that is based soley on the strength of identity politics. It used to be that it was just one part of the political story to our nation, now it’s everything.

In this devisive time, I think it’s more important than ever to create an inventory of your own identity, not so you know where to stand– but so that we can find common ground with our supposed enemies.

This is not a litmus test. It is an endeavor for new ties. It’s a hand across every aisle and divide. It also has pineapples.

Who Am I?

This List is in no particular order. Just like my brain:

  • I am a painter. I am excited about a new series I have banging around in my brain. It’s basically using John Singer Sargent’s style of painting luminescent skin, to paint flawed bodies. It’s partially my idea, and then inspired by something my husband said about entropy and beauty. He’s smart.
  • I am a wife. But I am not your typical wife. I’m a cool wife. (Yes, that was a Mean Girls reference.) No, seriously. This segues into a lot of other pieces of my identity–
  • I am bisexual. Though I prefer using the term Queer.
  • I am polyamorous I am complex in my relationships. I am into Polyfidelity?
  • I am, for sure, polyamorous.
  • I am oddly traditional. While I would never foist my personal beliefs onto other women, I like staying home with my son, while my husband has the more traditional “Head of Household” role. Older women love this about me, but it’s not a moral stance. I try very hard to never clutch my pearls in horror, but I would be happy to wear my pearls with pride. If my son didn’t break all my jewelry, that is.
  • I am a mom. Notice that this wasn’t at the top of the list. That was intentional. It’s not that I don’t love being a mother. My son is the best thing I have ever made and I would literally die for him– but I think society expects us to drop all other aspects of our identity when we give bith. And that’s just not healthy.
  • I am a collector. Really, I just have these cues that bring me happiness– Like fuzzy blankets, squishy kawaii stuffed animals, office supplies, pineapples, plaid– the list goes on and on.
  • I love oldies music. My favorites are Blossom Dearie, The Inkspots, Nina Simone, and Nat King Cole. There is an album where Natalie Cole sings her father’s catalog. I listened to that CD until it was absolutely ravaged.
  • I also love quirky or emotive modern music. Here it would be things like Post Modern Jukebox, Sufjan Stevens, Tilly and the Wall, Cat Power, Brandi Carlile, and of course, Lizzo. That beautiful bad ass bitch is everything I want to be.
  • I love adaptations and covers- basically all clever references. This has mostly to do with my love of layers and familiarity. Some doctors might say that also has to do with my autistic sensibilities- that comfort from familiarity, the structure. But it’s apart of me for sure.
  • I love movies.
  • I love theatre. This is my mother’s doing. I get honest to blog frission from a well staged scene in play or musical. “Hamilton”, I am looking at you. The only show that possibly beats out my sister’s ballet performance of “How Slow the Wind” which is my favorite thing I have EVER seen on the stage. And I am a playwright.
  • Oh, yeah, I am a playwright. I write plays for children. They’ve been performed internationally. Which sounds much coooler than it is. It’s like getting paid with “exposure” and “experience”. The artists know what I am talking about. Although, I shouldn’t complain. I did actually get paid.
  • I love to laugh. It gives me such an endorphin rush.
  • I am a kinkster. I thought I should mention that after speaking about endorphins. The particulars of this are worth their own post, so I’ll let that sink in for while before I go into it.
  • I love fifties kitsch and aesthetic BUT I also think that it is one of the most morally corrupt and corrosive decades of the twentieth century. Again, that’s probably worth its own post.
  • I love ASMR. If you read this blog regularly you probably already know this and know that I am listening to Gibi as write this. It helps me focus and relax like nothing else I have ever tried. I aspire to one day create my own ASMR videos if only to give back to the community that has helped me so much.
  • I am a photographer. This is my father’s doing. More than the lessons he gave me, I believe I got his eye and his sensibilities when it comes to visual stimuli. I also got his sensitivities when it comes to hearing. And just being sensitive in general. Again, a whole other post.
  • I am compassionate. To an unhealthy degree. While cognitive empathy has been both an interest and a struggle for me, I am extremely compassionate and suffer from sympathetic empathy pretty much every moment of every day. Medication helps with that last one.
  • I am plus sized. That’s a fashionable term for saying that I have excess body fat and atypical measurements. I call myself soft. While there are days when I want to be more svelte it is only to earn approval from strangers. And that is silly.
  • I am neurodiverse. This means that I am wired differently from more typical people. First, I am autistic. I also have ADHD, OCD, agoraphobia, anxiety, and (technically) Bipolar Disorder. I vacillate on the validity of the Bipolar Disorder diagnosis because my doctor told me it was induced by the wrong medication (a real thing.) I think that it was never Bipolar but just undiagnosed ADHD. Not sure. I take the meds he has prescribed and they help me quite a bit. So, I don’t really care what my written diagnosis is anymore… as long as I can function to a reasonable degree.
  • I am handicapped. I don’t like to use this term, actually. Not because I think it paints me in a negative light, but because I think others have it so much harder than me. My badass writer uncle has been living with MS for years. (His blog is called Wheelie Out There and is about travel from the perspective of wheelchair bound man. So cool.) Even with my daily joint and muscle pain, my occasional dislocations– I dont think I will ever live up to his battle. I know that it is not a competition. I just have perspective and respect for those who deal with more than dislocated joints. After all, my joints pop back into place. They rebound. And with effort, so do I.
  • I am funny. This is very much a part of my identity. As much as I love to laugh, making people laugh is my most natural high. It’s why I went into plays. What’s more playful than a play? And what’s more difficult than making insecure middle schoolers laugh?
  • I am a spiritual Unitarian. People like to mock my faith because Unitarians are so open. Earnestly, for some reason I cannot understand, inclusivity is considered a weakness when it comes to church. Despite it being the most important lesson Jesus gave us. Social justice was one of our evangelical tenets before anyone ever used it to “cancel” or exclude one another. My favorite Unitarian Minister and author is Robert Fulghum. Check him out.
  • I am an audio bibliophile, which means I love audio books. I honestly don’t even consider books without an audio book format. It’s a form of respect and accommodation to those with disabilities AND its own art form. I also have aspirations to become a successful voice actor, specifically for audiobooks and radioplays.
  • I am a romance novelist. Sometimes I wonder if it is the dismissible quality of genre fiction that draws me to it. If no one cares, I am liberated to be as sentimental, erotic, and controversial as I want. Only one of those is welcome in the children’s plays category. I’ll let you guess which.

There are a lot of things that I hate or get on my nerves that are apart of my identity too. But hate is too easy of a unifier. We have to try harder than that.

So, who are you?

White Coat Syndrome

I was told that I had White Coat Syndrome when I always had strange blood pressure issues. One of many diagnoses I assure you.

After I had my son, where my blood pressure nearly killed us both, it became about my weight. I know that weight does have an awful lot to do with blood pressure. Of course, it does. But my overworked primary care physician, who actually told me he’s too busy for me… It was his only answer. For every problem. Every time. I made a joke with my husband that I was going to develop a drinking game when I went to his appointments, and take a shot for every time he blamed something on my “morbid obesity.”

I am actually not that heavy. I’m not the skinny girl I was in high school, or even the chubby girl in middle school. But I have had food problems since I can remember eating. Mostly bingeing on high carb items brought on by mental stress and impuslivity issues. Not to mention low dopamine, and eating during sleep issues. This isn’t about my weight, though. Enough people are interested in that that I don’t need to talk about it.

It’s just that… I’ve never gotten help for a problem I’ve had for a very long time… because I knew what they would say…

Like a lot of neurodiverse people I deal with a lot of chronic physical pain, mostly in my muscles and joints, especially my hips, wrists, neck, hands…. Ok, pretty much every joint, every where. Muscles too.

After I had my son, it got even worse. I was told that I had carpal tunnel related to my pregnancy. Neuropathy from gestational diabetes. I was told that it was my weight and my posture. I was told to go to a chiropractor. I’ve been tested for diabetes so many times, celiac, hepatitis, heart disease, and even cysts on my ovaries. Which had one of the most painful tests I’ve ever experienced, because I also can’t actually fill my bladder. Never been able to. The pain was excruciating. And all for nothing. No cysts, no answer.

I was looking up my own information on autism comorbidites, when I came across Ehlers- Danlos Syndrome. I knew that it was something that effected the autistic community, but I mainly understood it as a mobility issue. I simplisticly thought, “I can walk, that can’t be me.” And that ever constant voice, “Don’t borrow trouble. Don’t take what’s not yours.”

But then I came across the diagnostic critera for EDS and POTS (Postural Orthostatic Tachycardia Syndrome) and I saw all my troubles laid out before me. It was an “aha” moment for sure, but it was also an “oh… fuck.”

You see, the symbol for the Ehlers Danlos Society is a zebra. Becuase of the phrase, “When you hear hoofbeats, think horses, not zebras.” Well people with EDS are the zebras. They are the people that don’t get believed, who get called hypochondriacs, alcoholics, liars, Munchausens, basically an irritating nuisance. The people who get told by their doctors they are too busy for them…

Just to be clear, when he told me that, I hadn’t seen him in like over a year. I was just worried about my blood pressure issues. So, when I finally got the courage up to make an appointment, and he told me that I should get a different doctor about two sentences in… Yeah… I’m sure he was overworked, legitimately. It just was pretty… fucked up.

When I called him during the beginning of the pandemic with my sickness, he pretty much dismissed me then too. But because I have agoraphobia, I was ok with his “call back when you need a ventilator” attitude that was so common then. Everytime someone lectured me on not going to the hopsital I could say, my doctor says to stay home and call back when it gets too hard to breath.

He’s not a bad man. He’s just pretty clear in his biases as he has always treated my husband very differently. He just believes him. Immediately. Doesn’t second guess him. Doesn’t tell him to go away.

But… that’s a tidal wave of bullshit that I am not ready to battle. That’s just being a woman. I can only imagine what it’s like for women of color. Or an immigrant woman. That gets you a hysterectomy in a detention center, apparently. Or if you go back far enough, sometimes, a labatomy. But that’s a whole other thing.


So I have this very probable diagnosis staring me in the face and I just don’t want to deal with it. Even if it is an answer for all the pain. It’s not a curable thing. It will still always be a problem. I will still be disbelieved. It was both a relief and a heartache. I can’t have another diagnosis. I can’t go through the gauntlet of opinions and second guessing and disbelief. Not again.

So I wrote an email to my doctor asking for a refferal to get genetic testing. No diagnosis. I don’t care about a diagnosis anymore. I just want to know if I carry the mutation or not. I want to know for my son. That’s it.


Zebras sound like guinea pigs… the noises they make. Did you know that?

So when you hear a guinea pig…Make sure it’s not a girl guinea pig. They’re probably pretending to be a zebra for attention.

The Feeling of Falling

When my chronic pain hits its zenith, its absolute worst, and my mental and emotional facilties start to slip because of it, I remember him.

My student, who will remain nameless only because I will never get his consent to say his name- but my former student, who I directed in his middle school plays, that’s not him in the photo but that is me around the same time I met him.

He was the first person to say to me, “I’m autistic.”

It was because I had touched his shoulder to move him to another position, and as a very touch aversive boy he nearly jumped out of his skin. And he said, “Please don’t touch me, I’m autistic.” And having never known anything about autism, because I wasn’t even close to my scope of self awareness yet, at first, I was annoyed. I felt rebuked. But the sincerity of his distress, his voice, stayed with me for so long that I knew it was real. I can see it still, movement for movement, his curly blonde hair bouncing in shock, his blue eyes going wide, the rigid posture, and the stressed blinking. And I think the truth was, in that moment, I had a blue streak of recognition. I am not touch aversive, but I knew that fear and pain in his eyes. I had seen it in my own.

My diagnosis was more than a dozen years away but I saw the truth. And that truth probably made me too hard on him sometimes, just as I was to myself. Just as I was to the other nuerodivergent children that I adored but also wanted to “help” by repeating the same advice to me. Bad advice.

It also made my mother one of his most fierce supporters, even if she didn’t always understand why. I think she saw it too. My mother and I worked together to create these productions if you did not know this already. We were colloquially known as THE Burkhalters, and we occasionally dragged my sister and father into the family business from time to time.

A few years ago, very close to my diagnosis, but not yet. When my son, with his own bouncing curly blonde hair and wide blue eyes, was given his diagnosis. And I kept telling his doctors, “I am not afraid of autism. I have had autistic students. I know how great they can be.”

My student killed himself by stepping off the roof of his New York city apartment. I got this news the way anyone gets news these days, through facebook and rumor. It nearly destroyed me. I’m still hoping the way he did it was just some misinformation, but I don’t believe it was.

No one will convince me that he was beyond saving. And because I know that feeling. The desperateness to make the pain stop. Often LITERAL physical pain, not just emotional pain. I often feel myself falling. Falling with him.

I’m not posting this as a request for sympathy or even as a confession that I did not do enough. I didn’t. I’m not even telling you as a cautionary tale. That if you take that step you will haunt your loved ones forever.

I guess, what I am saying, is what I want to do is go back in time and tell that little boy something else.

“I got you,” I’d say. “You want to take a break? That pain will stop if we just give you a break. I got you.”

I got you. I got you. I got you.

That’s what I want to say. Not “Okay, honey. Then scooch to the left for me. Good job.”

He was a very gifted young actor. He couldn’t cover his stimming blinks until much later, but I think he eventually did. And though, at the time, I thought he had grown out of his touch aversiveness somehow, I think he just learned to grin and take it. That shouldn’t have been the success story we all treated it as. Good job, we said. (Me too, remember, we knew even less then.) When he lost his scholarship for pot use (which was probably how he was dealing with his pain) he somehow fell from grace in the conventional midwestern town he was from. The town that had also bullied him. For being gay, for being autistic, for being weird.

One of the only fights I got into with the administration of the school was when they said that I didn’t have the power to demand the children who broke his crochet loom pay to get him another and apologize. The same children who called him a fag. I backed down because I didn’t have power. I didn’t have power over myself let alone the people who blamed him for bringing it upon himself. So I hid, literally, in the orchestra pit.

I can still remember the look of anger and betrayal on his father’s face.

I didn’t go to the funeral. I couldn’t. I sent letters with my mother who went as our representative, so that THE Burkhalters were in attendance.

I should have known that I would never get to say goodbye, even if I did go to the funeral. Because he’s there. In the wind that I feel in a still room when the pain is at its worst. Wind rushing by, a roar in my ears, as I fall with him. Again and again and again.

I got you, kid.

Is training abuse?

CONTENT WARNING: I am going to be talking candidly about Applied Behavior Anaylsis therapy. Especially in regards to whether or not you should put your autistic child through Behavior therapy of any kind. This is my opinion. This is not black and white, but all the gray. OK? If you can’t handle it, I strongly suggest you move on, with no judgement.

Speaking of black and white, I have a fear of killer whales- because their markings look like eye contact run amock, and because they have the potential to be vicious oceanic killers. So yeah, you don’t judge me and I won’t judge you. Mutual assured destruction right here. You can send me a picture of an orca and I’ll go to pieces.


Is ABA abuse?

If you are unfamiliar with Applied Behavior Anyalsis you may be wondering what I have against Swedish singers, but that is ABBA. Whom I love. Pay attention.

I’ve written two posts about ABA, one more postive, and the other explaining the darker side of ABA in more detail. Why do I have so many opinions on ABA? Because my son goes to an ABA clinic monday through friday, practically banker’s hours. More than that, I use the principles of ABA for myself, literally all the time.

So, with that ringing endorsement you would think I am on the pro-ABA side of this argument… I am not.

When people ask or claim that ABA is abuse, I always answer, Yes! And then immidiately, also- no.

I think much of this debate could be answered by changing one word. ABA is not therapy. ABA is training.

Is training abuse? That depends on two factors: the child, and the trainor. I say child instead of trainee because much of ABA is done without the consent of the ” minor patient,” and that right there would most likely bring a lot of people to the abuse conclusion. It does for me sometimes. But then it doesn’t.

Let me explain in a different context. Remember that this is an imperfect analogy. So try to not google search “terrifying orca pictures” until you get to the end.

My older sister is a ballerina. She has studied, performed, choreographed or taught, for nearly my entire life, so, ballet for over thirty years. She is very good. I am intensely proud of her. My heart went in my throat everytime she was lifted by her partner in a performance. My eyes watered everytime she she showed such emotional presense on the stage.

She is a truly gifted performer, with some obvious natural talent. But like I said, she’s been in training for the majority of her life. Did she choose this path? Or was it chosen for her? And was it abuse? (Sorry Mom.)

Is ballet abuse? It certainly can be. Have you seen a ballet dancers feet? (Have you seen Black Swan? That shit was unreal at times, but also very familiar.) Do you know how much my sister sacrificed? Large swathes of her childhood were given up just for dance. Does she enjoy it? I think so. But did she choose it?

Well, ABA isn’t ballet, you might say.

No, but it is a form of physical and mental training based on performance. That is what ABA is- it is performance training. It is training to deal with non-autistic people and situations. It can be extremely uncomfortable. It can mess with you physically and emotionally. But in the end, you have the presense and skill to deal with an unforgiving society.

Oh, so it’s not abuse. It’s just an artform?

Uh, no. It can absolutely still be abuse. Like I said, it comes down to the trainor and the child. Many of these therapists (aka trainors) don’t see it as performance but rather as “recovery” or worst of all, “a cure.” These people should not be allowed to interact with your children. The skills learned in ABA are not the skills of a “normal human being.” They are camoflouge to fit in and understand a world that makes virtually no sense. They are manners.

Manners are not bad, but they are not “normal behavior.”

Manners are performance. They always have been. The difference with an autistic person, is the lack of those nuerotypical manners can cause them lasting trauma. Mostly because the world will punish them for any breach of that performance. Sometimes, with their life. Honestly, if they’re lucky, it will just be their emotional health, and not their physical body. Not like the little boy recently shot eleven times by police during a meltdown. And that’s just within the last few weeks.

I’m not saying this is ok. I would like the world to be so much better. We might get there. We’re in a bit of a culture war at the moment, and the backlash to an inclusive society without ableism is very intense. I just don’t see them changing fast enough to keep my son safe without a little performance on his part.

Here is the key. I have said it before and I will say it again. It is your job, as either a parent, or a therapist, to let the child know that this is a performance. There is nothing wrong with being autistic. There is nothing wrong with our sensitivity. Accomodation should be a welcome and innocuous thing.

If you do not do this, ABA results in a permanent kind of camoflouge. Which ultimately ends up in burnout and pychoisis. Sometimes suicide. And if you are the parent that let them go down that road, treating them as a “recovered autistic.” Well then, that is totally on you. You were unknowing in your abuse, but that kid was traumatized nonetheless.

And if you’re a therapist that thinks they are “curing” autistics. Get out. Just go find another job. Or better yet, rethink your ideas from the perspective of the children you are “treating.”

And some kids just do not have success with ABA. It’s not in their natural temperment. They have demand avoidance and don’t find that the inducement or “reinforcer” to comply with demands is strong enough to balance out the emotional toll. And therefore, that consistent forced compliance is damaging. It will result in trauma no matter how many m&m’s you give the kid.

I have a demand avoidance form of autism and so this would probably not work great on me without constant neuroaffirming support. So I watch my son CONSTANTLY for signs of trauma. I drive his therapists a little crazy, I’ll admit. And I’m constantly working on a back up if I feel that his ABA therapy has crossed the line into that traumatic territory.

But look, trauma is not death. You can come back from it. Start talking about manners and camoflouge and mirroring. Say Autistic with pride. Let them know that no one is “normal”. That we are all acting to a certain degree. Reinforce this with love and acceptance of things like stimming behavior at home. Give them a chance and a place to be themselves. Let them dance.

Yes, let them dance– or to bring my analogy back in a semi-clumsy way–

When you fall in dance, it hurts. And the large mirror they practice in front of? It sometimes shows you something you would rather not see. But it’s there for you to change. To make the small changes that turns something awakward into something with grace.

And if you haven’t noticed yet. I am not talking about the child. I’m taking about us– the movers, the shakers, the deciders, the parents and the trainers.

Is training abuse? You tell me.

Are you pursuing perfection or grace?