Should I Say “Autistic Person”? Or “Person With Autism”?

My seven-year-old niece recently received her paper diagnosis.  To welcome her into her newly-recognized autistic family, I enlisted the community’s help.  We put together a book of welcoming messages, artwork, and short informational articles she could use to learn more about what it means to be, not only autistic, but capital-A Autistic.

This is the third of the three short essays I included.

Should I Say “Autistic Person” or “Person With Autism”?

When some people talk about autistic people, they say “autistic people.”  Others say “people with autism.”  Sometimes, these two groups of people argue over which is the “right” thing to say.

Lots of autistic people prefer “autistic person” to “person with autism.”  For them, their autistic brain is a part of them.  It’s not something that was added on or that they just put on in the mornings, the way you might put on a blue shirt.  They want others to notice that their brain is a special part of who they are and an okay part of who they are.

Many doctors, teachers, and counselors prefer “person with autism.”  They feel that it is more respectful to mention the word “person” first.  They want to emphasize that being a person is what makes someone special and okay, whether or not they have autism.

You can choose whether you want to use “autistic person” or “person with autism” when you talk about yourself.  You can also change your mind!

When you meet other autistic people, the polite thing to do is ask which one they prefer, and then use it when you talk about them.  For instance, I prefer “autistic person,” so if you wanted to talk about me, the polite thing to do would be to say, “My aunt Dani is an autistic person.”  My friend Emma prefers “person with autism.”  So if we wanted to talk about her, we would say “Our friend Emma is a person with autism.”

It is okay to insist that people call you what you want to be called. Some people might get frustrated if you do.  But you have the right to ask people to treat you with the same respect you give to them.

Who Is the Autistic Party Giraffe?

My seven-year-old niece recently received her paper diagnosis.  To welcome her into her newly-recognized autistic family, I enlisted the community’s help.  We put together a book of welcoming messages, artwork, and short informational articles she could use to learn more about what it means to be, not only autistic, but capital-A Autistic.

This is the second of the three short essays I included.

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Who Is the Autistic Party Giraffe?

The Autistic Party Giraffe was born during a conversation about who gets to tell us what it means to be autistic.  The answer?  We do!

Autism is all over the news right now, and everybody has an opinion about what it means to be autistic.  Some of those opinions, like the ones in this book, are positive: we like our brains and we like each other.  Some of those opinions are not so positive: people say that we’re broken, or tragic, or “stupid.”

The Autistic Party Giraffe is here to remind you that you get to decide what being autistic means to you.   You can listen to other people’s opinions and try out their advice, but to make the final decision, you should listen to your heart.

PS: the Autistic Party Giraffe is a “she,” and her name is Montana.

What Is Autism?, in Plain Language

EDIT: Lei at Parenting Autistic Children with Love and Acceptance (PACLA) made a flyer version of this essay, which you can download and distribute freely by clicking this link [pdf].

My seven-year-old niece recently had bestowed upon her a piece of paper that confirms what I’ve been saying for a year now: THIS KID IS ME.

By which I mean she’s one of us.

To welcome her into her newly-recognized autistic family, I enlisted the community’s help.  We put together a book of welcoming messages, artwork, and short informational articles she could use to learn more about what it means to be, not only autistic, but capital-A Autistic.

This is the first of the three short essays I included.

 What is Autism?
Autism is one of the many different variations of human brain. Because our brains are wired differently than most people’s brains, we think, say, and act in ways that are often different from most people – and the way most people think, say, and act can seem very weird to us sometimes!

Doctors diagnose autism by looking at the ways we communicate and behave. Doctors have all kinds of theories about what autism is and the best way to help autistic people do the things they want to do.

Some of these theories make a lot of sense. For example, one doctor believes that the main difference in our brains is that they have lots and lots of connections between brain-parts that most brains don’t have. As a result, we experience colors, sounds, textures, smells, tastes, and emotions more strongly than other people. (This is called the Intense World Theory.)

Some doctors’ theories don’t make much sense at all. For instance, another doctor believes that autism makes us unable to really understand anything around us, or to really feel love for other people. (This is called Theory of Mind.) You and I both know that’s not true!

An autistic brain isn’t a “bad” or “wrong” brain to have. It’s just different. Because the world is set up to work best with non-autistic brains, having an autistic brain can be tough sometimes. The world isn’t designed for our brains! But we can do lots of things to change the environment so that both autistic and non-autistic brains can share it together.

AutAc Reads IADK, Part 2: Part II

Part II is titled “The Blame Game,” and now that I’ve finished reading it, that title makes me want to laughcry in extreme fashion.

Here’s what I mean.

Part II starts with an exploration – okay, a takedown – of the “refrigerator mother” theory of autism.  This theory prevailed throughout most of the 1950s and 1960s, was based on a quasi-Freudian approach that assumed autism was caused by mothering so crappy it caused the child to withdraw traumatically from life itself, and was championed at various times by both Leo Kanner (who would later retract his support) and Bruno Bettelheim.

The authors do a really brilliant job here of getting the reader to side with the parents against Bettelheim.  In fact, they manage to do it in a paragraph and a half, without once mentioning Bettelheim’s name or the words “refrigerator mother.”  By the time we’re introduced to the concept, we already think it’s outrageous.  It’s an entirely pathos-based rhetorical move, and it’s very well executed.

It is, in fact, one of the best rhetorical moves in the book, and one of the most dangerous for autistic people.

The authors make some noticeable ethos-based slips as they develop the story of Bettelheim’s “mom did it” theory and the parents’ reactions to it, however.  For instance, they repeatedly fall back on the stereotype that autistic children have, in Uta Frith’s words, “a haunting and somehow otherworldly beauty.”  They also seem oblivious to the fact that Bettelheim, for whom they show no sympathy, did a great deal of work on the question of feral children, including Victor, the “Wild Boy of Aveyron,” for whom they showed a great deal of sympathy in the preceding chapters.  Bettelheim’s theory of stories being necessary to childhood development they mention not at all, even though that theory is crucial to understanding “the story of autism.”

And their attempt to explain what it’s like for an autistic person to go to the dentist is, while valiant, entirely non-autistic in its assumptions and entirely off the mark.  (For a book that purports to be about autism to get one of the most commonly-shared autistic experiences this wrong displays what Simon Baron-Cohen would call a severe impairment in Theory of Mind.)

These slips severely undermine the ethos of the authors’ arguments – but the authors are interested in tugging our heartstrings, not establishing their credibility.  And they assume the “our” whose heartstrings are being tugged are non-autistic parents of autistic children, or people who could imagine being non-autistic parents of autistic children.

Part II of this book is written for parents.  Period.  Its focus is on parental attempts (including those of Ruth Sullivan and Bernard Rimland) to challenge the prevailing “refrigerator mother” theory of autism and to find other resources for their children – everything from chromosomal testing to access to public schooling.  Aimed toward that audience, it is entirely engaging and absorbing.  It is nearly impossible not to identify with, and to feel for, these parents.  (I know.  I tried.)

Which is precisely what makes the final chapter so powerful, and so powerfully dangerous.

[Trigger Warning: Murder of an autistic person at the hands of their caregivers.  Many of my readers know this story, even if they don’t know this particular version of it.  A list of people murdered in similar circumstances can be found here.  It takes over an hour to read aloud.

If you need to stop here, know this: there is nothing in the last section of this review that you do not already know, or cannot already deduce from the information given above.

If you’re not sure why someone would want to stop here, please keep reading.  The rest of the review will make it clear.]

The last chapter in Part II tells the story of the murder of 13-year-old Dougie Gibson, in 1971.  As the authors tell it, on the last day of his life, Dougie’s father, Alec, took him to the local McDonald’s for Dougie’s favorite meal (fries and a Coke).  Then they returned home, where Alec shot Dougie in the head, put the gun on the kitchen table, and waited for the cops to arrive.  Alec was later sentenced to life imprisonment.

If the authors had merely recited these facts, this section might not be so dangerous.  If the authors had recited these facts and strongly condemned them, or reported ways in which someone (anyone!) took strong steps to prevent such an event from occurring again, this section might actually be helpful to autistic people.  It might actually help to stem the tide of murders of autistic people by the family members and caregivers they are supposed to trust.

The authors do neither of these things.

The authors, instead, sympathize with Alec Gibson.  They portray other non-autistic parents of autistic children as sympathizing with him as well – as “understanding” why he would do such a thing.  They portray Dougie as an eternal child who, if not entirely “out of control” at the moment of his death, soon would be – and this “fact” as sufficient to justify his murder.  By so doing, they implicitly condemn the life sentence Gibson received.

And if this endorsement of Dougie’s murder existed in a vacuum, it would be terrible enough.  But it doesn’t.  It exists within the context of several connected chapters that are each powerfully constructed to make us sympathize with the parents.  By the time we get to Dougie’s death, only the most critical (or autistic) of readers will even hesitate.  Most won’t.  They’ll see Alec’s actions as the authors want us to see them: as sad, but justifiable.  They’ll see Alec’s life sentence as the authors want us to see them: an overreaction by an uncaring court system that doesn’t see the “real tragedy.”  And they’ll see the “real tragedy” as the authors want us to see it: as having an autistic child, not as being murdered for being autistic.

Every media portrayal of an autistic person’s murder as sympathetic or justifiable leads to more deaths.  This isn’t hyperbole, it is fact.  Jillian McCabe ran Internet searches for exactly such stories while hatching her plot to throw her six-year-old son, London, off a bridge.  Stephanie Rochester murdered her six month old son Rylan – and then claimed it was because she thought he had autism.

Every media portrayal of an autistic person’s murder as sympathetic or justifiable leads to more deaths – and this media portrayal is particularly well-crafted to encourage parents to sympathize with a parent who turned to murder.

Part II of this book will keep me up at night.  It should keep you up as well.

AutAc Reads IADK, Part 1: Part 1

In a Different Key: The Story of Autism actually contains 46 short chapters, grouped into “parts.”  Since none of these chapters is really long enough for a review, though, I decided to review the book by Parts.

Part 1 contains six short chapters.  As a whole, it focuses mostly on the childhood and adolescence of Donald Triplett – Leo Kanner’s “Case 1,” the first child described in his 1943 paper “Autistic Disturbances of Affective Contact” [pdf].  The authors’ telling of the story is engaging and clear; it makes a quick, entertaining read.

Nonetheless, it reminds me of nothing so much as those mass-market afterschool-special-esque novels that were so popular when I was in elementary and middle school.  You may remember these.  They had titles like Is My Sister Dying? (spoiler: yes, of kidney failure) and What’s Wrong With Daddy? (spoiler: Alzheimer’s).  They were always told from the point of view of a “normal,” “healthy” family member.  And while they attempted to shed light on unusual conditions and create empathy in the reader, they always did so by turning the family member with the condition into a spectacle, sideshow, or sob story.  The moral was that You, Normal Person, should Feel Bad for These Poor Unfortunates.

Donvan and Zucker’s retelling of Donald Triplett’s early years left a similar taste in my mouth.  By autism literature standards, it’s actually not the worst thing I’ve read.  There are occasional uses of phrases like “baffling,” “puzzle,” “mystery,” or “for no reason,” but they’re subtle, and they’re clearly intended to reflect the frame of mind of Donald’s parents (whether they limit themselves to this effect is another question).  But again, I am reminded that the primary audience for this book is neither autistic people nor people who see autistic people as fundamentally human – and that, consequently, the actual audience for this book is not likely to walk away seeing autistic people as fundamentally human.

Approximately halfway through the six-chapter retelling of Donald’s story, the book diverges into a discussion first of Kanner’s work on “infantile autism,” and then – for the span of about six pages – into speculation on cases of autism that appear in medical and religious literature before a separate concept or diagnosis existed.

I found both of these to be summarily and sloppily written.  The research has already been done on both of these topics; the information and resources exist to produce much more clear, organized, and accurate six-page summaries of each topic.  Alternately, the story of Donald the authors are telling would have been harmed not at all by simply skipping these two summaries altogether.

Yet the authors chose to give us summaries that read as perfunctory and rushed, and to drop them smack in the middle of Donald’s story, interrupting what was an otherwise solid narrative flow.  I’m hoping this was a one-off mistake by either the writers or their editors, and not an indication of their ability to organize the rest of their information.

I was pleasantly surprised to discover one mistake the authors did not make, which was to conflate changeling “folktales” with autism.  The book’s surface and mainstream treatment of its topic so far indicates that had the authors gone that route, they would have made the exact same surface and mainstream errors everyone else does – like assuming that changeling stories somehow describe autistic children.  The word “changeling” never even appears in Part 1, for which I am grateful.  (Perhaps a perfunctory summary is worth something after all!)

What we have, so far, are two authors who are shaping a view of autism as a puzzle, a mystery, a weird Otherness that “we normals” ought to have some sympathy for (the poor dears).  This is hardly novel, and it runs the risk of taking us into all kinds of heinous stereotypes.  We’ll see where it goes.

AutAc Reads IADK: Part Zero

I was recently asked to produce a review/cultural essay for Disability Studies Quarterly based on a list of five of the most recent books on autism.  One of those books, which I am starting with because it’s the only one I actually have in my hands right now, is John Donvan and Caren Zucker’s In A Different Key: The Story of Autism.

Borrowing a good idea from Friend, I’m starting with all the stuff that isn’t in a chapter.  Here, that’s the frontmatter and backmatter, but also the Preface, Epilogue, and Author’s Note.

Preface

The one word that sums up the preface to this book is “commodity.”

The preface opens on Night of Too Many Stars, 2012 – the Jon-Stewart-hosted benefit to raise money for “autism.”  Donvan and Zucker do not tell us where exactly that money went or what it was spent on – a pattern we see repeated by far too many autism-related charities, including the biggest, Autism Speaks.  Instead, they start with NOTMS as a way to highlight the way in which autism, once scarcely even heard of in popular culture, is today everywhere.  Whatever you think of it (or don’t), you’ve heard of it.

But, as an autistic reader, I find this preface comes off as crass and commodifying.  The “awareness,” the money, the viral hits, are clearly being made off our backs, and this book is contributing to that tradition without a moment’s self-reflection or pause on its collusion.  And when a substantial number of us are unemployed and impoverished, that’s not my favorite note on which to start a book.

Epilogue

The Epilogue dwells mostly on the dire straits in which the adult autistic population continues to find ourselves: largely deprived of services, unable to find meaningful employment, struggling with activities of daily living that we cannot manage ourselves.  There is, again, no focus whatsoever on autistic adults who are working together to help each other in these situations, have found or are finding workarounds, or who are launching programs to help ourselves with problems of housing, ADLs, employment, and safety.

It’s as if the authors never even though to ask the autistic adults they interviewed what was up – and since they claim to have spoken to Ari Ne’eman, at least, I know they talked to at least one autistic adult who could have clued them in on some of these projects.  Either they didn’t ask, or they chose to leave that bit out.  Either way, it’s a glaring omission from an otherwise important point.

A Note From the Authors

The authors explain where they pulled their information, including the artistic license they took in telling Donald Triplett’s story – they could not speak to his mother (who passed away in 1985) so they made stuff up for her to think and feel.  Cool.  Because nobody does that to women these days, even when they’re alive.  Oh, wait.

The last paragraph adds, almost as an afterthought, that the authors persist in using “person with autism” even though some “individuals or groups prefer the latter,” in which case they use “autistic person.”  They omit to mention that “groups” include vast number of autistic people – not just, as they claim, “those in the neurodiversity movement.”

Acknowledgements

As expected, this section is large lists of names – except where it claims that having autistic family members (as both authors do – one son, one brother) can teach them “what the “autism experience” is about.”  Um, no.  I haven’t even read anything in a chapter yet, and I can say with confidence that you do not know what the “autism experience” is about unless you are also autistic.

AMA Part 3: Fun and Games

Taking a leaf from a friend’s blog, I let Facebook ask me anything.  I’m blogging the answers to the questions I received over the next several days, in no particular order.

Today: fun stuff.

Have you written Fanfiction? If so, have you put in a neurodivergent Original Character or made a canon character neurodivergent?

Yes.

Until about five years ago, I would have said that I had neither put in a neurodivergent OC or interpreted a canon character as neurodivergent.  LOL I WOULD HAVE BEEN LYING TO US ALL.

I’m 33, and I started writing fanfiction when I was about 9.  I still have quite a bit of it from when I was 13 or so onwards.  In the past several months (due to the reemergence of The X-Files and some other interesting life events), I’ve reread quite a bit of it.  Here’s what I learned:

1. Someone needed to take the adverbs away from my teenage self.  NO.  BAD.

2. All of it – ALL OF IT – reflects my attempts to deal with the trauma I was experiencing at the time.  Some of that was the trauma of being an undiagnosed (or – what’s the word for “probably had a diagnosis but no one told you”?) autistic being raised by a parent who really, really did not accept that, some of that was the trauma of having multiple chronic pain conditions and unaddressed serious injuries, some of it was other stuff.

I thought I wrote fanfiction to get away from the trauma of my life.  Instead I went deeper into it.  I am currently suspecting that when one has trauma and writes fiction, those two paths are the same path.

3. Because so much of it was about dealing with my own trauma as a neurodivergent kid, I both gravitated to obviously neurodivergent characters and wrote OCs (including a few tragic Mary Sues) as neurodivergent.  I read Mulder as neurodivergent, but so does most of the fandom.  I read Himura Kenshin as a trauma-induced neurodivergent multiple (and the moral of the Kyoto arc as “you live well as a multiple when you accept everyone in your system,” not “you live well when you stop being a multiple”).  I flapsqueed so hard I fell out of my chair when season 2 of Agents of SHIELD gave us both Coulson and Fitz as neurodivergent – my attraction to the entire MCU is that it is a diverse set of narratives on how we manage neurodivergence as it is connected to trauma.

If you could eat only one food for the rest of your life, what food and why?

Against the Grain’s GF sesame bagels.  I’ve eaten these for breakfast every morning since my celiac diagnosis, and they never get old.  Alternately, black cherries.