The Digital Hyperlexic

Poetry, neurodivergence, book reviews, activism.

Tag: autism

Autistics Speaking Day 2016: Interview With An Autistic Multiple

by digitalhyperlexic

Hey, remember my post from last month? While talking about occupyingthe realities of being Autistic and trans at the same time, I also said this:

“Remember that I said I had to come out of four closets?…The fourth is multiplicity…In my case, Ian [Nicholson] — the person who’s composing this post — is one of four people in the multiple personality system that occupies this body. Three of us are male, and one of us (Nicole) is agender. We’re all transgender by the simple fact that none of us are the gender this body was assigned at birth. And that makes my experience of gender WAY more complex than I would imagine it would be for a singular individual.”

Welp, I decided that today was the day to talk a little bit about being Autistic and a multiple personality system.

No, we ain’t nothin’ like Sybil. Most other multiples we’ve met aren’t, in fact. In fact (and the fact that I’m saying this should be no surprise to most readers), a writer named Static Nonsense pointed out the blatant sensationalism in works like the movie Sybil quite correctly:

“Media portrayals of DID [dissociative identity disorder] that focus on the extreme differences between identities and personalities within a system ignore these very important differences in functionality. They focus on the ‘cr*zy’ instead of opening a window to the depth and variety in how DID can work for a system. And that, in turn, erases our experiences if we do not match these extreme examples.”

We should insert a caveat: what we’re about to discuss are our personal experiences of being a multiple personality system. We’re all different, and each system or collection of headpeople encounters different kinds of difficulties and issues. There are things we don’t go through that other multiples do, and vice versa.

So…You Said There’s Four Folks in Your System. How About Some Introductions?

Sure thing! As a system, we’re known as Tes, which is short for Teselecta, a shapeshifting timeship from the TV series Doctor Who that can morph itself into looking like any person (in the episode “Let’s Kill Hitler,” the Teselecta has morphed to look like one of Hitler’s henchmen in order to assassinate him). And as mentioned earlier, there’s four of us total in here: Ian Nicholson, Ian MacDonald, Nico St. John, and Nicole Asatira.

Ian Nicholson: I’m a transgender adult male, and the one who was in this body first, ever since birth. I’ve always been in here, and always will be. Over the last few months, I’ve discovered that I generated the other system members either out of perceived necessity or trauma. I’m the one that’s usually in front and piloting between 75 and 80 percent of the time that we’re awake. I’m usually the one that handles paperwork, bureaucratic tasks, most of the phone calls we need to make, and other administrative-type stuff. When we meet new people, I’m usually the one that greets them first and gets to know them. I do a large percentage of our freelance article writing and some of the poetry. The other system members describe me as a nerd, and occasionally an obstinate pain in the ass. When I dress this body, we probably look like we raided Michael Stipe’s wardrobe, we’re the lost member of Weezer or on some days, we snagged fashion tips from David Tennant.

Ian MacDonald: Meh. What do I say? I don’t know. I’m a guy, and I’m trans. If you have to ask how old I am, it’s complicated. I’ve existed in this body for 38 years, but I’m a teenager. If that sounds weird, wait ’til you hear how I got here. But that’s for later. I just know I looked in the mirror one day, and there I was.

Nicole Asatira: Alright, I’ll keep it short and sweet. I came about when we were twelve, almost thirteen. I’m an archive. To be precise, I am an artificial intelligence that currently is responsible for keeping our memories stream straight. I mostly hold the memories during the years I fronted, so we don’t lose the flavor of them. I was created by Ian Nicholson to keep us safe from the hot mess of a woman known as our evil, abusive aunt — specifically, to pretend to be a “good Christian girl” to avoid getting hit and screamed at. It didn’t work But I can tell y’all that I ain’t good, I ain’t Christian, and I sure as hell ain’t no girl.

Nico St. John: Greetings, mortals. I was first spawned when this body was around eighteen years old. Were I to occupy my own body, I would be decidedly taller. I still retain a femme aspect in myself, so I am the reason we still have feminine clothes in our closet as well as makeup. I’m a transgender male, I suppose, but my existence is beyond gender. Although we wrote some of the poetry in our MFA thesis Time Travel in a Closet, as far as some of our future writing is concerned, well…you ain’t seen nothin’, yet. 😉

How Did You Become Multiple?

Ian Nicholson: I generated the others for a variety of reasons. Ian MacDonald came into being because we couldn’t make sense of feeling like we should be a “boy” when we looked in the mirror yet we were constantly being called a “girl.” We were two when this happened. Nicole was an attempt to survive — we were terrified that the adults around us would destroy us, so she came into being to get them to leave us alone and stop abusing us. She tried to do this by pretending to be straight, female, and neurotypical. It nearly killed us. And Nico was generated by both Nicole and me. He was crafted as a means to try to understand aspects of life and culture that had been hidden from us in Middletown — he’s a darker being in spirit, but not malevolent, and his creation happened at another point in our lives when we felt once again that we really should be male, but could not even realize the idea of living as one.

So, You’re Multiple Because of Trauma?

Tes: In our case, yes. The creation of the other three members was due to either a) feelings of extreme conflict that we could not resolve or b) flat-out physical and emotional abuse. With Ian MacDonald and Nico St. John, we felt there was no way to be male when we perceived that we were stuck as a female. Nicole was simply trying to prevent us from getting killed. However, we can’t speak for other multiples, and creation of systems can happen under a variety of circumstances.

You’re All Autistic?

Tes: Yes. It’s an integral part of who we are, no matter who’s in front.

So…What About that Word “Disorder,” Tes? As in DID?

Tes: We’re not sure how we feel about that. We’ve existed like this for so long that we’re not sure we’d even want integration. And it’s pretty useful, in some cases. Some of us are better at certain tasks than others — Ian Nicholson’s happy to deal with the bureaucratic stuff to keep us fed, properly licensed, having money, getting our medicines, and so forth, while Nicole has no tolerance for dealing with outsiders in order to get those things done. Nico comes out when we feel threatened and we need to keep a stranger at arm’s length. Ian MacDonald is the best one at driving. Nicole’s organizational skills are a little better than the others, so she sometimes deals with scheduling.

We should also say here that multiplicity is a form of neurodivergence in its own right. It seems to us that it’s in line with a basic definition of neurodivergent (a term created by Neurodivergent K, blogging now at Radical Neurodivergence Speaking). And because it’s a broad term, as Nick Walker of Neurocosmopolitanism points out, encompassing multiplicity in that universe makes complete sense. In our case, it’s an alteration in brain functioning due to trauma, and because we’re Autistic, we’re also multiply neurodivergent.

That’s about all the time and space we have for now, but we’ll continue writing more about our experiences with multiplicity. We namely wanted to give a basic introduction to our readers of our world.

~Tes

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Double Exposure: Occupying Autism and Transness Simultaneously

by digitalhyperlexic

So…lately there’s been a bit of discussion around the Interwebs that there’s significant overlap between being autistic and being transgender. Recently a friend of mine — Sparrow Jones, who blogs over at Unstrange Mind — talked about this in a guest post here. I briefly mentioned it in The Conversant interview with Cassie Mira Nicholson, my new intentional sibling. And while researchers seem to be interested in delving into the larger questions about why the correlation could possibly exist, people who are both autistic and transgender are navigating realities endemic to both of these aspects of their life. This post by blogger Alyssa Gonzalez, “Being Trans and Autistic Is Weird and Common,” also talks about this too, and it’s what inspired me to write this post of my own.

Those of you who’ve known me since I first began blogging as Nicole will remember that I began talking about being Autistic back in 2010. At the time, I had self-diagnosed as Aspergian and embraced the “Aspie” label. It’s what I had at the time, and how I understood my neurotype. This, of course, came with some positives and negatives. On the good side, I immediately tried to embrace being Autistic, deciding that it simply meant “different” as opposed to “broken.” Yet at the same time, internalised ableism, ignorance, and serious self-esteem issues began to push me towards a denial of the fact that I am disabled.

When the DSM V diagnostic changes came along a few years ago, I was a bit on the fence. I was partially worried that the disappearance of the term “Asperger” would mean that people like me would be missed all over again by diagnostic criteria, and that we’d be left behind when it came to getting critical services and our needs fulfilled. After all, I hadn’t been diagnosed until age 34. As a young person of colour assigned female at birth and growing up in a dysfunctional family, I had been completely overlooked by all the autism hoo-hah back in the 90s that chiefly focused on young white males. And perhaps I should be thankful, in a way. By age 13, I’d already been institutionalised once. Had the “autism label” been slapped on me as a teenager, it’s very likely I would have been committed on a more long-term basis — or even worse, I would not be alive now. Consider the frequent murders of young autistic people by family and caregivers, and you understand why I say this.

However, my evolution of thought and understanding towards embracing my disability began with this post on Shaping Clay. My friend who blogs here, Michael Scott Monje, Jr., discusses why the Autistic identity is critical while she reflects on the perceptions of the “Aspie” label versus Autistic. While I’m not here to police identity, I have also observed that some use of the term “Aspie” is linked to an idea of supremacy — of not being like “those” Autistics who are nonspeaking, who require assistance to carry out tasks of daily life, and so forth. Functioning labels only add to the fuckery at hand, and there’s also some ideological underpinnings of the term that inevitably lead to a divide between Autistics who do the “expected things” of self-care and adulting — holding down a job, paying bills, feeding oneself, and handling one’s transportation, to name a few — and parents who say: “You’re not like my child, and they will never be like you.” Significant is the existence of the blog We Are Like Your Child, whose posts regularly discuss and refute that notion. And once I began to understand these things, I stopped calling myself an “Aspie” and began to refer to myself as Autistic.

I’ve also undergone a mental transformation in terms of understanding my own gender. For years, I’d been haunted by the notion that I wasn’t really a girl. Christened Nicole Nicholson upon birth, I tried my best to embrace it. However, I remember a moment at age two when I looked in a full-length mirror in our first apartment in Milwaukee. I tried to bring this moment to life in one of the poems in my MFA thesis, Time Travel in a Closet:

“I first saw a boy in the mirror
when I was two.
My brain tickled:
stare into the glass,
look behind your face.

Then I wondered
where my penis was.

I tucked the boy I saw into a back
pocket heart, did
not let him see daylight;
he slept until I was thirty-eight.”

Believe me, I didn’t hate being in dresses. I didn’t despise dolls, or traditionally feminine colours, or things that were perceived as “girly” interests. Truth is, gender is way more complex than that, and cannot be limited to a simple male/female binary. Although I’m male, and I realised this nearly a year and a half ago, that does not preclude me from wearing dresses, using makeup, loving fashion, wearing nail polish, or choosing to present femme. Any suggestions that it does — or the violence and hatred towards transwomen, nonbinary femme-presenting folks who are read as masculine, queer men perceived as having a feminine affect, or gender non-conforming men who elect to break the binary — are rooted in nothing less than misogyny. In other words, an unqualified hatred of women, or of anything feminine.

Now, remember I just mentioned being haunted by the notion that I wasn’t really a girl? Well, it was a sort of a ghost of a thought — an unconscious idea, an ineffable feeling, an untouchable something around which I couldn’t even curl my own tongue. Every once and again, I’d feel that nagging in my mind, linger for a moment in my emotions. And just as quickly as it appeared, I’d magically make it disappear. I didn’t want to even entertain the idea that I wasn’t a real girl. But there it was, and throughout the first thirty-eight years of my life, it refused to go away, reappearing at inconvenient times. I was terrified to even allow it manifest into rational thought, much less tell anyone about it.

What further added to my confusion was the fact that my parents did not insist on gender-stereotyped norms and behaviors as they raised me, yet my family in Middletown, Ohio with whom I lived after my parents split up — primarily my abusive aunt — frequently did. Prior to age twelve, I played with Barbies, toy trucks, Matchbox cars, and Cabbage Patch dolls. I had an Easy-Bake oven and a toy workbench. I read the Oz series of books, the Alice in Wonderland adventures, and about Pipi Longstocking. I idolised those girls, because they were curious, imaginative, and had wonderful adventures. For an entire year, I tried my best to dress like Punky Brewster. And at the same time, I also wanted to be Keith from Voltron, Defender of the Universe. (Truthfully, I’m probably more like Pidge — but that’s a whole ‘nother post.) I wanted to be Shana from Jem and the Holograms AND Panthro from ThunderCats. You get the idea.

However, once my aunt entered the picture, that was all over. All I had shoved down my throat was normal, normal, normal. And I don’t just mean when it comes to erasing behaviours that I now understand to be Autistic, as I’ve documented before. That included the policing of gender norms. I’ve already talked about in my last post how I was judged to be unfit as a romantic female partner based on my lack of volunteering for emotional labour demands. I was also criticised about my lack of enthusiasm for styling my hair (particularly in “white” ways and fashions), my lack of interest in what was touted as “normal things that teenage girls do,” and so forth. After being bullied at school repeatedly and undergoing physical abuse at home, I was content to stay in the world of books for a while and only interact with people I trusted. But when I did express an interest in one thing that’s seen as a “normal teenage girl” thing — boys — I was immediately discouraged and slut-shamed.

Little did I know — and little did the adults around me even know — that my experiences were much bigger on the inside. That nagging feeling that I wasn’t a girl? Well, it kept popping up during my teen years, too. I had the double exposure effect living inside my own body, and with my own sexuality, of a liminal existence of being two things at once — one true, and one false. I felt “queer,” but my understanding of gender confined me to “girl” and thought it was impossible to be queer as I was. At the same time, I was attracted to boys, but felt like a gay boy myself instead of a girl. The idea of being a “girl” attracted to boys in a heteronormative way just did not seem natural to me. It felt incredibly foreign, but I could not put words as to why. Additionally, I was attracted to girls as well, but felt sorta like a boy (and not the “straights” I was surrounded by in school) at the same time.

And during this time — while being called a girl just felt so damn wrong — I tried mimicking my female friends, only to be seen as botching up horribly and then being laughed at. I constantly felt like I was a fraud and a failure, and I tried not to give a shit. But the truth was, it all fucking hurt. Intensely. And it hurt like God’s hammer on my soul when I was accused of being a lesbian by my aunt a few months before my eighteenth birthday. I was called a bulldagger, by the uncle I’d come to trust and admire, the one who’d beaten his alcoholism and had gone clean. It hurt so fucking much that I attempted suicide. Thank God I failed.

So now here I am, after more than 25 years of “faking it.” I’m 40 years old, all grown up. Owning that I’m autistic, queer, and trans. I had to divest myself of so much harmful shit it’s not even funny, in order to get here. Internalised ableism, racism, misogyny, and cisnormativity — and I’m sure there’s still more manure under which I’m ideologically buried. I had to embrace truth, come out of four different closets, retool my life, and leave a job at a seminary that I’d held for eight years in order to even begin to free myself. I’m progressing towards medical transition once my type 2 diabetes is under better control, and my kidneys are firmly out of danger.

And even now, I’m making new discoveries about what it means to be neurodivergent and trans. Remember that I said I had to come out of four closets? The first three were: as queer when I was 18 years old; as autistic at age 34; and as transgender at age 38. The fourth is multiplicity, a few months before turning 40. In my case, Ian — the person who’s composing this post — is one of four people in the multiple personality system that occupies this body. Three of us are male, and one of us (Nicole) is agender. We’re all transgender by the simple fact that none of us are the gender this body was assigned at birth. And that makes my experience of gender WAY more complex than I would imagine it would be for a singular individual.

It ain’t a cakewalk, folks, but at least I know what I’m dealing with. I’m both excited and scared. Meanwhile, there’s a part of me that’s also worried that all the efforts to understand what makes us folk who are autistic and trans tick will also be used against us to “treat” us, convert us, make us conform, or worse. There are already a lot similarities between queer/trans conversion therapies and ABA, as observed by Amy Sequenzia. Can you blame me for being afraid and suspicious? I’m trying to keep a positive outlook, but elect to be aware of what could harm our common communities as a whole.

Acceptance for one should become acceptance for both. I ask people who are opposed to queer conversion therapy whether they would support ABA — and if so, why is it not okay to force queer kids to change, yet it’s perfectly alright to try to change autistic kids? The effects of either are devastating. These kids emerge scarred for life, and come out as bitter individuals with severe cases of PTSD, along with a learned helplessness and self-hatred in some. The home-grown ABA carried out on me through physical, emotional, and sexual abuse almost killed me. Let me say that again, in simpler terms: ATTEMPTS TO CHANGE ME ALMOST KILLED ME. Had it not been for a bit of internal stubbornness and the support of people who cared about me, it most certainly would have.

Long story short: I’m autistic and trans, and it took a long path of emergence and coming to peace with myself to be able to say both of these things. And there’s a lot more of us out there. It’s time for those outside our communities to embrace both gender diversity and neurodiversity. At the very least, there’s a likely linkage between the two, and acceptance will benefit both.

5 Problems with “Married to an Aspie: 25 Tips for Spouses” (#4 Will Really Shock You!)

by digitalhyperlexic

Yesterday, my friend Dani who blogs at Autistic Academic shared an outrageous article, “Married to an Aspie: 25 Tips for Spouses,” on Facebook. Immediately, several us reacted to it with a mix of amusement, disgust, and horror. By its title, the article purports to be a helpful guide for spouses of autistics. However, it is rather problematic on so many levels. Dani, along with Emma (who blogs over at Lemon Peel) have already written their own responses that are hilariously brilliant and break down some of the worst bits of the original post: one at Field Notes on Allistics and a joint post here.

As a queer autistic polyamourous trans man in a long-term relationship with another autistic man, I also immediately had some issues with the original article. For that reason, I was inspired to write about it, too. In a way, maybe that’s a good thing, considering sometimes I have trouble getting my blogging muse on. So I may have to indirectly thank the author over at My Aspergers Child for some accidental inspiration this morning. Without further ado, here’s my problems with the original article.

1. What, QUILTBAG autistics don’t exist? Apparently not to the blogger. Throughout the entire piece, they refer to autistic-allistic relationships in terms of strictly heterosexual parings. For example, we see this little gem in tip number seven:

“An NT partner needs to understand her Aspie’s background in order to work with him on their marriage. She will need patience and perseverance as well as understanding that he functions on a different emotional level to her.”

While I’m not addressing the inherent truth or falsehood of this statement, I call the reader to look carefully at the pronouns used. The NT partner is referred as “she” while the autistic is referred to as “he.” The author appears to be writing from a heteropatriarchal frame of reference, and I do have to wonder if they have considered partnerships and marriages between two men, two women, two transfemme nonbinary folks, two agender folks, or other non-heteronormative kinds of love relationships. It appears that by the author’s logic, me and my long-term life partner Solomon do not exist.

Which leads me to…

2. The author appears to assume autistics are male. Gender binarism aside, I need to point out the flaws in this assumption. So many of my autistic friends are women or somehow fall in the femme dimension: ciswomen, transwomen, nonbinary femmes, etc. For so long, autism has been viewed through a male-centered, heteronormative lens, which is why so many folks who aren’t male have often missed identification and/or diagnosis. (There are so many issues I have about the medical model of disability and how it applies to autism, but I digress. That’s another post for another time.) This was also true for me, prior to embarking on my social, legal, and medical transition: I was not diagnosed until age 34. And as a formerly female-identified autistic, I often felt erased and ignored by much of the public discourse on autism.

Never mind some of the author’s incorrect and downright harmful assertions. I must deduce that their intended audience is women, and because of this, their adherence to similar conventions in their thoughts does a disservice to a large portion of the potential audience by ignoring their presence.

3. What, no non-monogamous autistics, either? Again with the heteronormativity. They failed to consider that there may be those in their audience who enter loving polyexclusive relationships, or who maintain an intimate network, or who engage in open relationships. I use the term “non-monogamous” being aware that some practice relationship anarchy as well.

4. Excessive emotional labor, anyone? Dani and Emma have already done a phenomenal job of addressing in their own posts how the author seems to assume that in a heteropatriarchal context, the woman will assume the lion’s share of emotional labor. For example, you have cute little nuggets by the blogger, such as this in number eighteen:

“NT partners may begin to feel that they are entirely defined by the role they fill for their Aspie partner. There can be a sense that there is little mutuality, equality and justice.”

That’s not an endemic-to-autism problem. That’s an unequal-social-expectations-based-on-gender problem. I know this personally: growing up, the adults in my family of origin assumed I was female and based on this often judged me to be “unfit” as a romantic partner. “You’ll never get a man if you do/don’t (fill in the blank),” I was frequently told. Or, “you’re a girl, you’re supposed to (fill in the blank, again).” Much of this was likely based on my lack of enthusiastically volunteering for expected, energy-draining emotional labor. And my experience is not unique: autistic women are frequently viewed in a negative light for either be unable to keep up or not complying with society’s overt and covert demands of emotional labor.

Bottom line: whether in an intimate relationship between two people, an intimate network, or relationship anarchy, unequal emotional labor burdens are both unethical and unjust. I know a lot of us are sick and tired of seeing catering to manbabies dressed up as “oh, he’s autistic, he needs a little understanding.” While our needs as autistic people are indeed unique, it is dangerous to use autism as an excuse for abusive behavior, particularly out of cismen. That not only fails to hold individuals accountable for their actions, but also stigmatizes autistic people as well.

5. And how about perpetuating stereotypes? The author seems to be dancing around the unsaid stereotypes of autistic people, primarily those that claim we are unemotional, and incapable of demonstrating love. They appear to assert that we do have emotions and are capable of loving one minute, then in the next they come out with pieces of Dalek fecal matter like this in tip number nine:

“Aspies often has [sic] a specific area of weakness in marriage. They often do not feel the need to express love, and the NT partner can help them understand that this is important. Discussions about how to display affection, holding hands in public and buying small gifts can be beneficial, but don’t be surprised if the results are amusing.”

This is problematic on so many levels.

First of all, my own personal experience proves this to be patently false. My autistic partner Solomon has been by far the most affectionate and loving of anyone I’ve ever been with. Neither of us are big on public displays of affection, but he’s often quicker to hug and hold hands than I am. And physical affection aside, Dani and Emma in their joint post have quite correctly pointed out that trying to play “Pygmalion” with your partner — i.e. pushing compliance with only one way of showing love — is wrong and unnecessary:

“PROTIP: your autistic partner is probably expressing love just fine (and if not, consider that we live in a society that pressures men, in particular, not to express anything that isn’t gun-toting rage) – just in a just-fine autistic way. Rather than condescendingly ‘teaching’ romantic gestures that appear in every cliched rom-com ever written, try noticing how you’re already loved sufficiently that you agreed to marry this person.”

Secondly, the author is making grand, sweeping assumptions about all autistic people. The article is quite multifarious in this, but for brevity’s sake I’m only addressing the point about demonstrating love. In this case, it bears pointing out that autistic people’s ability and comfort levels with physical affection vary wildly. Some factors that affect this can include issues with processing incoming sensory data (including touch and smell), individual personality preferences, cultural norms, and the presence of trauma. For instance, I’ve slowly had to heal from childhood physical and sexual abuse: for much of my teenage years, I was only touched when I was being beaten or molested. So, of course someone like me would reluctant to engage in physical contact! In my case, I desired to, but the trauma I experienced plus my own battles with PTSD have made it much harder for me to actively seek it. It’s slowly happening, but it takes time, like with anything.

And while I’m probably preaching to the choir, I still must warn the reader that this is a case of “your mileage may vary.” I know my experience shares some parallels with that of other autistics, particular those with abusive childhoods; however, it should not be inferred that all autistics are comfortable in participating in physical contact, for whatever reasons.

If you’re in the mood for a good laugh, you may want to read the post that precipitated it all. Or if you feel like picking it apart piece by piece, that’s great too. But on a more serious note, it and other writings like it come from a standpoint not only rooted in false ideas about autistic people but also grossly false ideas about gender, sexuality, and relationships. I’m very cautious about anything written about autistics that’s not by autistics, and this blog post certainly is proof of why. Have fun reading it, if you dare.

The Only Way Out Is Through: Or a Bit of the Story Behind Time Travel in a Closet

by digitalhyperlexic

The following is a slightly edited and expanded version of the introduction written for my thesis while studying in Ashland University’s MFA program. I will be defending my thesis this July, and in our introductions we were each asked to discuss a group of around ten texts that form the “literary genealogies” that influenced the poems in our theses . This is also intended as an update since my original #MyWritingProcess post, which I wrote prior to both beginning my MFA studies and my transition.

CONTENT WARNING: Mentions of suicide, physical and sexual abuse, homophobia, anti-blackness, and ABA.


“Everybody communicates. Words are beautiful. Our words have value.”

These words by author and autistic activist Amy Sequenzia are simple, clear, and remarkably profound. Infinitely beautiful, and bigger on the inside.

With my words, I come to you as a survivor, a man with scars both inside and out. I spent my childhood and adolescent years occupying a series of closets, all nestled within each other like Russian dolls. I knew that my family expected me to be a “good Christian girl,” not the oversized, socially awkward, frizzy-haired, hormone-driven, hopelessly unfeminine dork I saw in the mirror. In their eyes, that “me” was absolutely unacceptable, and they reminded me of this nearly every single day until I was eighteen years old. Meanwhile, I hid the physical, emotional, mental, and sexual abuse that I endured at their hands. They demanded that I keep all of this, too, inside a closet. Read the rest of this entry »

Nothing About Us Without ALL of Us. That Means Autistics of Colour, Too.

by Memoirs Of A Dead Woman

First things first: I suggest that Steven Shapin find a new profession.

His lack of journalistic integrity in his recent New Yorker article, “Seeing the Spectrum“, is painfully evident. While reporting about John Donvan and Caren Zucker’s book In a Different Key: The Story of Autism, there is a clear failure to recognise just how problematic this book is. All Shapin has managed to do in almost 3900 words is perpetuate the same old tired and horrible myths about autistic people, including:

  • that we need to be cured;
  • that abuse is acceptable treatment (READ: ABA);
  • that we are rigid, inflexible, emotionless beings; and,
  • that our own communication and testimonies are unreliable.

Shortly after the article’s appearance, protests on social media began by autistic people. Some of them used the hashtag #notblackmirrors, in reference to a quote from the article:

“It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.”

Thinking it would be helpful, I also posted a couple of selfies — one on Facebook, one on Twitter — adding my voice to the #notblackmirrors protest. Trouble is, this wasn’t probably the most well thought-out protest. Not too long after my own tweet, I saw this post from Radical Neurodivergence Speaking on Facebook:

“SHOCKINGLY ENOUGH Autistic PoC exist. Many of us have extremely dark eyes (mine are on the light side of ‘dark’ & if you know me in person AND look at eyes you know…yeah they can be mistaken as such). I can think of a dozen Autistic people off the top of my head that have basically-black eyes.”

This was a case of me not thinking before I posted and tweeted: not considering something very important. While #notblackmirrors may have been well-intentioned, it does leave out a large percentage of autistic people of colour. Sometimes, my own eyes are so dark they’re almost black. This was true for my late father, who was African-American and autistic, and well as my future husband’s late  father, who was South Asian (Indian) and also autistic. Additionally, I know several autistic people of colour whose eyes are black or almost black.

Radical Neurodivergence Speaking ended that post by saying “Do better. Please.”

And they’re absolutely right.

A few artifacts surrounding all of this are very telling, and point to additional larger issues. Because the link above is to the Do Not Link version of that heinous article, the original contents and artwork are still visible. Included is an illustration of what seems to be a large image of a light-skinned male child, in front of which there is scaffolding with small groups of people standing on it. Of course, my mind immediately flashes to the often perpetuated image of autistic people as, as someone else on Facebook put it (and my apologies to the original commentator, as I can’t remember your name), “eight year-old white boys obsessed with trains and airplanes.”

Which, of course, leaves out ALL autistic adults. And autistic people of colour. Finally, it leaves out autistic women and nonbinary autistics.

When I used to blog on Woman With Asperger’s, I frequently mentioned lower diagnosis rates for autistic women and girls, and also lower rates of diagnosis, later diagnoses, and lack of access to services for autistic people of colour. For me, these were issues very close to home. I’m a multiracial person of Black ancestry, and until late 2014 I identified as female (the story behind that is a different post for a different time). And I was not diagnosed until age 34. To be fair, I grew up in a dysfunctional family of origin: so my late diagnosis may have saved me. Had I been identified autistic as a teenager, it is very likely my family would have institutionalized me, or worse. I might not be sitting here writing this post right now. I spent nearly all of my childhood trying to pass for allistic, once I figured out that I was not the so-called “normal” that everyone else seemed to be. My chameleon circuit worked so well it almost killed me.

My set of problems are shared by some autistics. There are also issues of abuse, exclusion and restraint, our own testimonies being seen as unreliable, lack of access to needed supports and services, and so forth. However, for some of us — particularly autistics of colour — there can also be issues of life and death. Autistic people from all backgrounds have been murdered, but autistic people of colour face institutionalized racism which increases our chances of facing wrongful arrest and violence. One need only think of the cases of Neli Latson and Kayleb Moon-Robinson — both within the last two years — as examples.

Nothing about us without us. That phrase has often been used to address policy made on us autistic people without our input, a lack of autistic voices in media coverage about us, and funds raised without any of the money directly benefiting us as well as harmful, ableist pity-based messages about us used to raise those funds.

That statement should be amended to read: Nothing about us without ALL of us. Just as mainstream LBGTQIA+ organisations have ignored the needs of queer people of colour, autistic activism should strive not to make the same mistakes. It’s bad enough that mainstream media whitewashes autism. Autistic activism should be careful not to (whether purposefully or inadvertently) do the same.

My words are meant out of love for fellow autistic activists. Shapin, Autism Speaks, et. al: no love for you. Sorry not sorry.

N.I. Nicholson

A 1991 STUDY OF APPLIED BEHAVIORAL ANALYSIS, OR, AN OPEN LETTER TO DR. LOVAAS

by Memoirs Of A Dead Woman

Thou shalt beat him [a child] with the rod, and shalt deliver his soul from hell.
— Proverbs 23:14

Dear Dr. Lovaas: I must tell you
about the hot brand embossed
into my sacroiliac skin,
a letter D like my algebra grade
from high school freshman year — or,
D for “dumb”, D for “different”,

the toothless sideways grin
of my Thalia mask.

Maybe it was a comedy,
trying to pour my skinless self
into a “normal” mold:

but the licks of angry tongues
and leather belts
made me try to liquify, solidify,

until I was all Good Christian Girl,
a Goody-Two-Shoes with a warped face
and curved heart — a thing
I vaguely recognized in the mirror.

Truth is, I had the mask
upside down: it was Melpomene’s.
I should have been singing
its goat-song, to match the stinking fur
slapped onto my back

while I, 14 years old, autistic,
ignorant of my stripped fiber optics
and brain wiring like barking sycamores,
was made to dance to Normal in B# Minor
in glass-shard ballet shoes.

Lovaas, you demon, you quack,
maybe you never instructed
my family in your methods
but the outcome is the same:
at 38, my feet still fucking bleed

Written 8/11/14
Revised 10/8/14
 © 2014 N.I. Nicholson. All Rights Reserved.
—————————————————–

(Below are the original notes with published with the poem on my old blog in October 2014.)
This was a poem originally written in August (2014) but just revised today (10/8/14) as I feel it is timely. Sparrow Rose Jones’ blog post about ABA (applied behavioral analysis) inspired me to revise and post this poem. Jones breaks down with clarity and detail about ABA and why it is not only useless to help teach autistic children but why it is damaging and hurtful.

I grew up not knowing I am autistic. I was abused physically, emotionally, and sexually by my family of origin, who insisted that there was “something wrong with me” and I needed to be forced to “act normal”. I see so many parallels between some of the abuse I endured and modern (and even past ABA methods, as evidenced by this 1965 Time Magazine Article describing therapies that are the precursor to ABA — DO NOT READ IF YOU ARE EASILY TRIGGERED!). Dr. Lovaas may not have been instructing my family on how to abuse me, but he helped influence the dominant cultural paradigm which insists on a false sense of “normality” — a state of being that the majority is but minorities are not. Normal is a lie, and no matter whether your difference from the dominant culture is in terms of race, gender, gender identity, neurological state of being, sexual orientation, disability, what have you, if you are different, you are often made to feel as if you must conform.

So this poem, you could say, is my comment on the issue. I was angered and hurt at some comments parents have made on The Thinking Person’s Guide to Autism which started this whole debate in the first place — and Jones’ response is brilliant and well thought out. Mine is certainly angrier, but I’m throwing it into the dialogue, for what it’s worth.

This poem, it should be noted, was also generated in my writing towards my final MFA thesis and book of poems. It may be revised and republished, but I hope its essence remains the same. It should get pretty interesting, folks.

-N.I.

Coming November 24 from Autonomous Press — The Real Experts: Readings for Parents of Autistic Children

by Memoirs Of A Dead Woman

Mark your calendars for November 24, y’all. The Real Experts: Readings for Parents of Autistic Children from Autonomous Press is coming! As author and Neurotribes blogger Steve Silberman put it, this upcoming book is:

“Full of practical advice and transcendent ‘Aha!’ moments, The Real Experts offers young autistic people and their families the kind of wise mentorship from tribal elders that was unavailable in previous generations. It’s a landmark book.”

The book features essays by autistic authors and bloggers such as:

More info on The Real Experts is available on the Autonomous Press website.

 

Ten Things THIS Autistic Kid Learned from Being Bullied

by Memoirs Of A Dead Woman

[TW: Bullying, Abuse, Gaslighting,]
Read the rest of this entry »

My Essay “Speaking for Myself” in NeuroQueer Online

by Memoirs Of A Dead Woman

“It is way too easy for marginalized people to internalize the dominant cultural prejudices against them. Neurodivergent folk are subjected to both overt and unspoken prejudice against them in many forms, including ableism. And with that ableism comes a pressure to be “normal”: fake it until you make it, if you can. Why use a scooter sometimes, when you can walk? Why use a device to help yourself communicate when you need it, when you can speak “perfectly fine”? Heaven forbid you appear disabled!”

My essay, “Speaking for Myself: My Cognitive Style, Ableism, and Communication” was published today (February 24, 2015) in NeuroQueer online. Go read it. 🙂

-N.I.

Neli Latson Receives Conditional Pardon by VA Governor

by Memoirs Of A Dead Woman

Neli Latson, as a child

[Image: a pair of tan-colored hands holds a photo of a young black teenager with closely cropped hair wearing a plaid blue and orange button-down shirt. The photo is inside an ornate red and gold picture frame.]

Qapla’!

Neli Latson has been granted a conditional pardon by the governor of Virginia.

This is due to Kerima Cervik’s petition to pardon Neli Latson receiving over 2,000 signature and the diligence of many disability rights, autistic, and other activists.

As Kerima says, ” Please don’t lose track of Neli, and do not forget the injustice done to him. We need to make certain the ADA is protected and that what happened to Neli never happens again.”

Related links:

– N.I.