How many people are affected by ableism?

ableism, Autism, Disability, Neurodiversity

[The following text is also a transcript for the featured image description]

How many people are affected by ableism?

Everyone is affected by ableism.

* At any given time, about 1 in 5 people worldwide has a disability.

* People who were not born disabled, or aren’t currently disabled, may become disabled later in life.

* Some people who do not identify as disabled or recognize themselves as disabled are in fact disabled and directly affected by ableism; for example, people with psychiatric disabilities such as depression and anxiety.

* Disability Rights are highly intersectional; civil rights issues for women, people of color and LGBTQ+ people are intertwined with disability issues. Disability rights also overlap with issues such as healthcare, education, poverty, and more.

[sidebar has an image of a caution sign and the following text]

CAUTION

Descriptions of ableism as a disorder is this series are satirical and not to be taken literally.

Ableism is not a form of mental illness or psychiatric disability; in fact, blaming bigotry or prejudice on mental illness or any other disability… IS ABLEIST!

Intro: Ableism Awareness Month

Part 1: What is ableism?

Part 3: What causes ableism?

Part 4: Is there a cure for ableism?

Part 5: Ableism Therapies

Ableism Awareness Wrapup Post

April is Ableism Awareness Month

ableism, Autism, Disability, Education, Neurodiversity

For several years, autism organizations led by non-autistic parents and professionals have focused on Autism Awareness in the month of April.

Autistic people have pushed back on the Awareness campaigns (and their usual pathologizing, othering frameworks) by asking for less talk of awareness and more acceptance for autistic people of all ages.

This year I was inspired to flip the old script with a new kind of Awareness campaign:

This April is Ableism Awareness Month

Join me in the coming weeks as I roll out some basic information and awareness of this epidemic of ableism, including examples and symptoms, treatments and alternatives, and more.

Part 1: What is ableism?

Part 2: How many people are affected by ableism?

Part 3: What causes ableism?

Part 4: Is there a cure for ableism?

Part 5: Ableism Therapies

Ableism Awareness Wrapup Post

#SayTheWord, Not “Special Needs”

Autism, Disability, Education, Neurodiversity

There’s a social media campaign going on right now to #SayTheWord – it was started by Lawrence Carter-Long, the Public Affairs Manager for the National Council on Disability, and is an active Twitter hashtag. The word, of course, is disabled.

The importance of this campaign is driven home to me over and over again as I see people performing ludicrous and painful contortions to avoid saying it. Reminder that when I make a criticism the way well-meaning people interact with disability, I am not attacking the people (parenthetical reminder that I was immersed in ableism myself not long ago), but inviting people to think about things in a different way.

Instead of saying disabled, nice people say things like:

  • differently abled
  • handicapable (yes, really)
  • physically/mentally challenged
  • special needs

It’s that last one, special needs, that I really want to take aim at, because I believe that seemingly innocuous phrase does serious damage to disability rights.

Every time someone says “special needs,” they reinforce the false notion that disabled people are asking for “extras” when they require accommodations, modifications, and/or support to access the same things that non-disabled people are able to access, such as education, public spaces, community involvement, and so on.

That’s the first problem, because access is not “special” for disabled people. It’s their right. The Americans with Disabilities Act of 1990, modeled on the Civil Rights Act of 1964, protects disabled Americans from discrimination, requires all to be accommodated in the workplace, and grants disabled people equal access to public spaces and institutions. Other countries have laws in place to protect disability rights in similar ways.

The second problem is, the phrase “special needs” flies in the face of the social model of disability. The social model says, the disabled person’s inability to access things is due not to the disabled person’s failings, flaws, or deficits, but on the environment’s failure to provide access to the things. For example, a Blind person is not disabled because they can’t see, they are disabled because the world was set up by seeing people for seeing people and is made of many things that are inaccessible to non-seeing people.

To make a metaphor of it, imagine taking a brand new car and submerging it in a lake. The car is disabled; there’s nothing wrong with the car itself, it still does everything it’s designed to do, but it cannot operate in its current environment. If were in an environment well suited to its needs and purposes, like say a road, it would be able to do all the things a car does.

Or, take a look at this short (1 minute 26 second) animation explaining the social model – it has captions for those who have auditory processing or hearing disabilities.

So, when you say “special needs” instead of disabled, you are saying, this person needs all sorts of special things to help them do what we can do. We, the people who designed the buildings, the curriculum, the programs, the services, so that they are tailored to our needs – we don’t need anything special to access those things. Well of course!

Some people shy away from the word disabled because they feel that it’s stigmatizing. (Some people feel the same way about the word autistic.) But you don’t remove stigma by dancing around it and being coy and hush-hush about it. That actually increases stigma. Disabled is not a slur and never was; it’s a neutral description. I believe that the truth is people are not just uncomfortable with the word, they are uncomfortable with disability itself.

Disability is a normal part of human diversity; somewhere around 15-20% of the human population is disabled. Like other forms of diversity, the presence of disability in the world enriches humanity in ways that we probably can’t even imagine. Being disabled is not something to be ashamed of, and it’s not something to be scared of; it’s just a fact of life.

I #SayTheWord because I believe that only by saying it over and over again, with pride, with confidence, can we accept disability itself. Say it with me.

(Another great post on this topic is Disabled? I Am Legend! by unstrangemind. And if you are on Twitter, be sure to check out the #SayTheWord hashtag, which is full of excellent.)

buy me pizzaImage says “#saytheword / eisforerin.com / disabled not ‘special needs'” on a blue background.

Kindness Without Respect is Worthless

Autism, Neurodiversity

Two stories co-occurred in my Facebook feed this past week:
*The Autism Cake (link goes to a great commentary by The Crazy Crippled Chick because I can’t ever bear to link you to a news piece calling it “heartwarming.”)
*Abuse at an Adelaide Autism Center  (Australian news story; see full text here: AEIOUabuse.)

I suspect some readers will instantly grok how these stories are interrelated, but let me break it down for you, beginning with the cake.

The story, brought to us by Cake Lady herself, goes thusly, and all the emphases are mine here: Cake Lady walked into a supermarket and to the bakery counter. She asked the person working at the counter to decorate the cake with a Happy Birthday message in icing. “After taking a long time,” the bakery worker presented the cake, Cake Lady smiled and thanked her before looking at the cake, then she looked at it while she walked away and laughed, but, “didn’t really mind that it looked so bad – I thought people would think it was funny.” At checkout, several other employees gathered round the cake, discussed it, took pictures, and finally told Cake Lady that the bakery worker was autistic and “you probably made her day” by smiling at her and saying thank you. The moral of the story, Cake Lady concludes, is “kindness is important.”

Where to begin? There is no kindness in this story at all. Not when Cake Lady smiles and says thank you in an ordinary exchange of goods at a supermarket. Not when she laughs behind the bakery worker’s back and how bad the cake looks – and not when she decides it is redeemed by comedic value for being so badly done. Not when the other supermarket employees gather around to gawk and not when they disclose the bakery worker’s autistic identity to a stranger without her consent so that they can applaud her for having a normal human interaction with a disabled person.

There is no kindness when Cake Lady posts this story to social media, with photos of the cake she finds so comically bad, literally to congratulate herself for “kindness.” (??) There is no kindness in the many many media outlets who published this story as an example of a heartwarming story of human kindness, without ever getting the perspective of the bakery employee, as if she is not a person at all, merely a prop. Which she is.

So what’s all the hype about? The reality is that our society does not value disabled people; they are seen as dependents, non-contributing entities, demi-humans whose lives are just a weak, broken, inferior version of “real,” “normal” people’s lives. Mostly, disabled people are just flat out ignored.

Insofar as non-disabled people have any positive feelings about disabled folks, they are based around condescension and pity: “Oh, that poor person. It’s so inspiring that they _____!” [have a job, were allowed to play for .5 minutes in a basketball game, went on an arranged date to the prom, etc.] “It truly gives me faith in humanity, when a normal person acknowledges the existence of disabled people in any way!” This is called Inspiration Porn. (Link opens a Ted Talk by the kickass comedian Stella Young.)

I see plenty of Inspiration Porn stories – usually they are about disabled people or homeless people, bonus points for both! – but Cake Lady has stuck with me. Why? Because it’s so flagrantly NOT an act of kindness, yet is being lauded as a shining example of goodness in the world. Cake Lady did not do ONE single kind thing in this story – I challenge you to name one! What people are lauding, really, is that: 1) a disabled person is allowed to have a job, and 2) the normals didn’t yell at her for fucking up at work, because 3) they feel bad for her because she is just a poor poor autistic person who probably doesn’t understand anything and it’s a special treat for another human being to SMILE IN HER GENERAL DIRECTION. That, it seems, is more than she deserves.

What does Cake Lady have to do with the other story? In Adelaide, Australia, the AEIOU autism center for young children is facing allegations that workers abused some of their young students, leaving bad bruises on their legs – parents suspect that this is related to potty training at the center. These are vulnerable non-speaking children who were not able to tell their parents in words what was happening to them, but they told them by becoming extremely upset about going back to AEIOU each day. The center’s response is to deny, deny, deny. Other parents are rallying to the staff’s defense, claiming that because it didn’t happen to their children, it didn’t happen to anyone.

Autistic children are not respected. They face the double whammy of being children, who generally are not respected by adults anyway, and disabled to boot. Autistic children are very often treated with this kind of “kindness” without respect: they are treated well as long as they are obedient and don’t have too many “behaviors.” Another way to describe this is “tolerance.” As Amythest Schaber said in their brilliant talk at the Richmond Autism Research Fair, “There is no love in tolerance. Tolerance is inequality. Tolerance says, ‘Who you are is different and wrong, but I, as the right majority, will conditionally allow your unpleasant existence to go on.'” 

The punishment for not staying meekly in the mold of the poor poor disabled person who is grateful for the slightest acknowledgment of their humanity is pain, abuse, and sometimes even death. The AEIOU case isn’t even that unusual – as noted in the Autistic Family Collective statement on the case, there had been five separate cases of abuse against autistic children in a 12 week period when the AEIOU story broke – in Australia alone. But this goes on everywhere.

In a world where it is considered a kindness to laugh behind an autistic person’s back instead of to their face and then publicly congratulate oneself for conducting an ordinary business transaction with a disabled person in a polite manner, abuse of disabled persons is a given. It’s a GIVEN. Abuse and murder are the inevitable outputs of a society that fails to have a very basic level of respect for disabled people, that does not even seem to know how to recognize disabled people as fully human – complex, unique people who experience the full range of human emotions that anyone else does (and in the case of many autistic people, an even richer and more intensely felt range of emotion), who are self-aware no matter how old or young they are, who need real human connection and shouldn’t have to settle for tokenism, inspiration porn, and abusive relationships.

I get frustrated, these days, when I see people sharing the Mr. Rogers quote that says, “When I was a boy and I would see scary things on the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.'” This is good advice to comfort children, but for adults it seems to be, more and more, an excuse for doing nothing. It sounds like people are just asking to be allowed to continue to ignore the bad and wrong things, to not have to talk about them. You’re a grownup now. Stop looking for the helpers and be one.

You don’t have to be an activist. I know more than many that it’s hard enough sometimes just to get up and face each day, without feeling obligated to join a war against evil. But I believe in the contagion of ideas as a powerful social change agent. So even if you never join a picket line, sign a petition, write a blog, or even share a Facebook post, you can be a helper by changing your mind. If you’ve gotten to this paragraph, you’ve at least read one blog post by a disabled person, and that’s a start. There are so many others out there. There is a wealth of voices talking about lived experiences of being disabled, or queer, or persons of color, or in so many other ways the people who are calling out for social justice. Once in a while, hear them. It will change you.

And remember. Kindness without respect for others is worthless at best, and actively harmful much of the time. Kindness without respect is what we already have in abundance: inspiration porn and tolerance. We don’t need more of that.

 

 

Not In Love With Julia

Autism, Neurodiversity

Everyone might be tired of hearing about Sesame Street’s new autistic muppet by the time I post this, but before I wrote up a full review I had to make my way through all of the materials at the “Sesame Street and Autism” site. I watched all of the videos, either when the kids weren’t around or with headphones while they were otherwise occupied, because I wanted to screen them first before I let them view of it – and, yes, it is weird to have to screen Sesame Street, of all things, for harmful messaging, but such is the state of the mainstream dialogue on autism that I knew there were likely to be some things I would not want my kids to see or hear. And there were.

What is Sesame Street and Autism?

First, a brief explanation of what Sesame Street and Autism is and isn’t. There’s been a lot of hype about Julia, the new autistic muppet as I call her and “muppet with autism” as most of the press does. However, there is no actual muppet. There is one storybook, told from Elmo’s point of view, about a cartoon muppet named Julia. The rest of the site is “Resources for Parents,” which include: 10 videos – I would say 5 were mostly or sort of geared toward children, 5 geared toward parents, ALL geared toward neurotypical viewers; some short articles – 5 out of 6 are for parents, the 6th is for neurotypical children; and Daily Routine Cards, which are like short social stories, that could work for any child.

There is no balanced view of prejudice

For this project, Sesame Street gathered input from a couple of good sources, including ASAN (Autistic Self Advocacy Network) and Boycott Autism Speaks, and some ableist sources, which I prefer not to name because I find that the mere mention of them always derails the Sesame Street discussion into “but why don’t you like them?” and it’s not what I want to talk about here.

The problem for me with this project is that you can’t “balance” autism acceptance and positivity with ableism. The ableism corrupts the message of acceptance and makes it unusable at best, and counterproductive at worst.

Lost opportunity to do good

It’s sad because I really wanted to like it. I think having an autistic muppet IS a good idea and could have been awesome if done well. It would have been great if Julia was a real, felt-covered muppet, was part of the regular cast, and was the protagonist in her own story. It would have been great if she was fully incorporated into the show as just another character.

It would also have been great to do some of the live action videos about autistic kids, if the kids had been allowed to tell their own stories and interact with other kids and/or muppets on their own terms. It’s true that for this age range, there are many autistic kid who can’t yet tell their stories either by talking or by AAC (augmentative and alternative communication), but Sesame Street has always been able to work with typical preschoolers who don’t talk that much yet, so they know how to do this. There is no reason they could not do this with autistic preschoolers besides ableism.

It’s sad because there is a need for children to hear more about being autistic, inclusion, and making friends with people who aren’t like you. There is a need for more representation of autistic people in media and especially in kids’ media, because I would love for this generation of autistic kids to grow up feeling like they are accepted and part of the picture. (I love the Junot Diaz quote about reflection: “if you want to make a human being into a monster, deny them, at the cultural level, any reflection of themselves.”) I would have loved to be able to show my kids a good Sesame Street video about being autistic, but it’s not here.

Where they went wrong: a breakdown

As I said, I watched all the videos and read all of the articles and looked at a few of the Daily Routine Cards on the Sesame Street site. Throughout all of their material, they use “person first language” or PFL (person with autism, so-and-so has autism) rather than “identity first language” or IFL (autistic person, so-and-so is autistic) despite the fact that most autistic people prefer IFL. With that, they didn’t even attempt balance. PFL happens to be a total deal breaker for me.

Even if I could swallow PFL, there was plenty else that bothered me throughout the Sesame Street site. I’m going piece by piece to explain exactly what the problems are because I know that the uninitiated might not see what is “wrong” with this stuff at first glance, but I hope that if you are one of those, after reading this you’ll consider another point of view.

The Amazing Song

“The Amazing Song” was all right, and one of the few things on the site that I put in the “would show my kids” category. It wasn’t great but it wasn’t terrible, which is the highest praise I can give anything here. I love the footage of happy flapping autistic kids and the message that “we are all just kids and we all want to play.” The message of othering is not as prominent here but it’s still present in the lyrics “it’s harder to reach out as others do/ but when you just look closer you’ll see amazingness show through.” Whose point of view does this represent? In the second line it’s clearly the neurotypical person as the default narrator, just as it is in ALL of the material on Sesame Street. Even this song speaks to neurotypical children as the default audience and excludes autistic children. Bummer.

We’re Amazing 1,2,3

This digital storybook is the only place where Julia the autistic muppet appears, as a cartoon drawing. And yet, the book is told entirely from Elmo’s point of view, as he explains the things that Julia does and feels. Given the creative freedom of a fictional cartoon storybook, how is it that even in this format the autistic person can not be the narrator of their own story? Sure, most children are not autistic, but is that a good reason to sideline autistic children into always being the object of the story and never the subject? Sesame Street could, and really really should, do better than that.

Benny’s Story

Benny’s Story is a short cartoon and it is just okay. Aside from using PFL, it uses some positive language about being autistic. But Benny is really separate from the other kids and is never shown belonging to the group. It’s true that autistic kids like playing alone sometimes, but what about when they don’t? This video seems to emphasize being different a little too much. However, it is the ONE video told from an autistic point of view, albeit an autistic cartoon resembling a clothespin with a face. So, there’s that.

Thomas’s Story

This live action video about an 8 year old named Thomas had some great moments – showing how Thomas appreciates the little details of his environment, showing him using AAC to communicate, showing how he uses a service animal on outings.

But the bad moments were really bad, and I think are likely to trigger PTSD in some autistic adults who might watch this video. The worst bits were when Thomas’s dad keeps yanking him down by a leash at his waist when Thomas gets excited around the Abby muppet – I think this leash’s main purpose is to keep Thomas connected to his service dog, but the dad uses it for unnecessary restraints and that’s disturbing. Can you imagine a Sesame Street video where a parent claps his hand over his child’s mouth when the child starts speaking too loudly? – that’s more or less the equivalent of what Thomas’s dad does to forcefully quiet Thomas’s body language. After that, Thomas’s dad corrects how Thomas hugs Abby by taking his arms and moving them to do a hug the “right” way, which is also just yuck. And I wasn’t crazy about having the camera intrude on Thomas’s alone time when he said he needed a break.

But the larger problem with Thomas’s story is that it is told about Thomas by neurotypical people (and muppet). It’s very othering. Thomas has the ability to communicate through AAC; at the end of the video he gets a chance to chat with the muppet Abby, and he has a little back and forth with her. This could have been the main narrative, and should have.

A Sibling Story

Aagh! I just about jumping out of my skin seeing Yusenia’s sisters help physically restrain her so that her parents could brush her teeth and hair. Later in the video we see Jaslyn, one of the sisters, prompt Yusenia to stay calm when she excitedly goes to hug Abby the muppet. This video was aimed at kids but I would never it show it to mine, or really, anyone. Coercion and physical force are not normal parts of an autistic kid’s life.

Being a Supportive Parent

A video aimed at parents, this one featured Yusenia’s dad talking about supporting his wife because in raising an autistic child, “there’s probably not a day that’s not stressful.” (As opposed to life raising typical children, which is nothing but unicorn farts and rainbows from sunup to sundown, right?) The worst part of this one was when they showed footage of a very unhappy looking Yusenia at her 6th birthday party, the first year when she was able to blow out her birthday candle, after years of therapy. The dad is crying as he recounts this milestone, describing her as “typical fingers in her ears, zoning things out,” concluding with “it took her six years of her life to blow out a candle,” which is so dismissive and self-centered and, honestly, anti-autistic, that I just… You know, Yusenia is not sticking her fingers in her ears to ruin YOUR experience of her birthday party, dad, she is doing it to cope with the noise and basically put up with everyone else imposing their preferences on hers, so, get a clue.

Family and Friends

Family and Friends is a story geared toward parents and told by two women who have been friends for years, and now have kids who play together all the time. One of the kids is autistic. I would probably show this to an adult neurotypical friend. It was not terrible and I liked some of the one mom’s statements about battling stigma: “I don’t want to ‘sell’ him to anybody, like, ‘he’s autistic, but….'” Still, given that Louie can be heard conversing with various people in the background of the video, I do not understand why he wasn’t allowed to tell any of his own story. It would have been great to hear a 6 year old autistic boy tell us about his life and his friendships, but as far as I can tell, he wasn’t even asked.

Nasaiah’s Day

This video about a 4 year old autistic kid could probably make my “would show the kids” list but I would have to explain to them that, no, Nasaiah does NOT have to learn to look people in the eye. (Eye contact is a neurotypical social convention but if it makes a child uncomfortable, he should not have to do it any more than wheelchair users should have to “learn” to climb the stairs on foot.) Other than that this was pretty cute and I loved his singing clip with Abby in the end. More like that, please!

Meeting Unique Needs

Here Nasaiah’s mom just talks about her frustrations in raising an autistic kid. Bummer, they seemed nice in the other one. I did not need to see this.

Family Time with Grover

This video was just so odd, I don’t know how to describe it. A lot of it is video of Grover with twin autistic boys and their older neurotypical sister, but that’s intercut with the parents talking about their kids and their parenting strategies, so I don’t know if it’s for kids or for parents. It wasn’t horrible but it was just more of talking ABOUT autistic kids rather than WITH them.

A Parent’s Role

This is a CLASSIC parent complaining video. It’s all about Dad and how hard his life is. “The challenges for me… You don’t get to do what other dads do… [Louie] doesn’t say I love you… It’s tough handling the stress… It’s very stressful and draining on [my wife]…” And then he ends with “it’s been a blessing.”

I’m going to say something I know is controversial, but parents’ complaints about how hard it is to raise an autistic child do NOT need to always be shown. They don’t need to be part of every conversation about being autistic. Parenting is hard sometimes, yes. But this narrative of suffering only strengthens the stigma that autistic people face in the world. It helps NO ONE. Not even the person complaining. And certainly not their child.

Can you imagine Sesame Street making videos of parents of typical children complaining about how difficult it is to raise their kids? Can you imagine Sesame Street doing this with parents of kids with other disabilities? Somehow it is unique to autism that the “parents’ lives are hard” story must ALWAYS be included. It really does not have to be included. There is a time and place to talk about how hard parenting your autistic kids can be, and it’s the same place you talk about how hard parenting your typical kids can be, how hard your marriage can be, how hard your friendships can be – privately, with trusted friends and family.

Read More

There were 6 short informational articles, 5 of them for adults, all of them for neurotypical people about how to interact with autistic children and/or their parents. “Being a Friend” for kids was pretty nice but it was totally geared toward neurotypical kids. There is NOTHING here for autistic kids. They are just erased. This tells me that Sesame Street does not think their feelings and experiences really matter. They never do tell their own stories and they never are addressed directly by the materials here. It’s all about autistic kids, but it’s not for them.

Daily Routine Cards 

Slightly misnamed, these are short social stories about everyday tasks like getting ready in the morning and crossing the street. They work for any young child as reminders and/or “what to expect” stories. They’re the only thing here that actually include autistic children as the part of the audience. So… meh.

The Bad Outweighs the Good

I’m an idealist but I do have a pragmatic streak. I know that massive social changes take time, and autism acceptance is no exception. Is Sesame Street a step forward? I would actually say yes, but only insofar as it is an opportunity to talk more, publicly, about how far we still have to go. It would advance nothing to say “Oh, Sesame Street has an autism initiative. At least it’s something, we’ll take it, let’s not throw stones.” Nope. Throwing stones is also a needed step in order to move autism acceptance forward.

These are my stones. This website is not good. There’s too much that’s bad tipping the scales toward ableism and stigma. I hope Sesame Street listens. I think they can still fix this. Go back to the drawing board (literally and figuratively) with Julia, scrap everything else. Yep, scrap it. You made an autistic muppet, awesome. I love that she does happy flapping and loves to sing. Make her a real muppet. Make her part of the Sesame Street family. Let her talk instead of just talking about her. Let autistic kids see their reflection in her and feel that they are real people too, not monsters. Let them tell their own stories. Sesame Street has always known how to let kids be kids and they can do it again, and they can start now.

NeuroTribes Book Review

Autism, Books, Neurodiversity

I usually write book reviews in batches in my What Are You Reading? series, but I am dedicating a single blog post to NeuroTribes: The Legacy of Autism and the Future of Neurodiversity by Steve Silberman.

In the lead up to the book release, Silberman’s book was getting a lot of buzz in the press. It was featured or reviewed in The Atlantic, on NPR, the New York Times, The Guardian, Wired of course, he was interviewed for Forbes, did this great interview for Vox, I could go on but you get the picture. I read many of the articles and was so excited to read the book that I pre-ordered it, even though I am usually the kind of person who just waits for the public library to get it. The promise that he seemed to be making, that he had set out to dispel the common mythology of autism and present a more true and accurate picture of what autism is and who autistic people are, had me on pins and needles.

The background to the writing of this book is that Silberman himself is not autistic, but has been a writer for Wired magazine for years. In the 1990s he wrote a piece called The Geek Syndrome, which proved to be quite popular, about the apparent “epidemic” of autism in places like Silicon Valley. Warning if you want to go back and read that, it’s full of ableist language that made me cringe so hard I couldn’t get through it – it’s clear that Silberman’s come a long way in his view of autism since then. When he was researching that piece, he became curious about why there were so many autistic people in the tech community, and his research into that larger question eventually became Neurotribes.

The strength of this book is in clarifying the true history of autism research and “treatment” protocols (I put treatment in scare quotes because autism is not a disease therefore cannot actually be treated; nevertheless, plenty of people have tried). By far the strongest chapters were the ones on Asperger, Kanner, and Lovaas.

But let me explain, for those not familiar with those names. The popular mythology among non-autistics in the autism community (parents, professionals, doctors) is that in the 1930s there were two Viennese doctors, one in America (Kanner) and one in Austria (Asperger) who “discovered autism” at the same time. It’s been believed that Kanner found a group of children who were profoundly disabled, non verbal or nearly so, and so these children and others like them from then on were said to have “Kanner’s syndrome” which soon was called “classic autism.” Meanwhile, Asperger found a group of highly verbal, professorial and quirky children who didn’t relate well to peers but were quite clever. This type was supposedly lost for a few decades and eventually surfaced as “Asperger’s Syndrome,” sometimes called “high functioning autism.”

One of the reasons this narrative has been so compelling is that it has allowed many people to argue that children with “classic autism” should be cured or treated to help them become more “normal,” while children with “Asperger’s syndrome” are mostly just quirky and smart. Many people who push back against the neurodiversity movement have asserted that in fact we should probably just split these up into two completely diagnoses and not call them both autism.

Such arguments are the reason why Silberman’s new historical record of the history of autism research is so important to how we view autism today.

In NeuroTribes, Silberman reveals that Asperger in fact describes a whole range of abilities and disabilities in the children and teenagers that he saw in his clinic. He correctly perceived that these abilities and disabilities were intertwined, essential to the person, and lasted throughout their lives to varying degrees. He believed autism was “not rare,” once you knew what to look for. He also identified autistic traits in the parents of his patients, though curiously he believed he never met any autistic girls and surmised that perhaps female autism was something that set in during adolescence, since he believed he had met some autistic mothers.

(It is posited that this could be because his clinic/school was a place that children were sent after having behavioral problems in typical schools, a problem that autistic girls have somewhat less often than boys; I’d guess it’s because autism in girls is poorly understood in general.)

One of the most fascinating details of this history is that in 1938 when Asperger gave his first and last public talk at University on his research into autistic children, the environment in Vienna at the time was one in which there was tremendous pressure to fall into step with the Nazi regime. For psychologists like Asperger and his staff, that meant participating in the genocide of disabled children, a program that this book went into in heartbreaking detail. By the end of this chapter I was weeping as I read.

Because of that dangerous atmosphere in 1930s Austria, Silberman asserts that Asperger put a spin on his research in order to emphasize the gifts and societal contributions that certain of his patients had to offer, outlining the case studies of four highly intelligent and scientifically gifted boys who had some minor social difficulties. Because Asperger had elsewhere written of the vast “continuum” of autistic traits, it is reasonable to assume that he was quite deliberate in “pitching” the strengths of a few in his clinic to save all of the children in his care.

After that talk, Asperger’s research was subsumed by World War 2 and tainted by a perceived association with Nazi eugenics, buried for decades. When it finally resurfaced in the early 1990s, his portrait of autism had become skewed to resemble what we now call “Asperger’s syndrome.”

What was happening in the US at the time was that Kanner, another Viennese psychologist who had come to America earlier, was also doing research on autistic children. Kanner had trained to be a general practice doctor and found a convenient back door entry into psychology (basically a clinic said “we need a psychologist, you’re hired”) that gave him a case of Imposter Syndrome. Silberman argues that Kanner was thus driven to establish himself as a person of importance in the field, and that is why he established criteria for autism that was narrow and specific enough to ensure that it would be considered a condition both rare and severe.

The crucial missing link that Silberman discovered was that Kanner hired as part of his clinical staff two former staffers from Asperger’s clinic – most notably, Georg Frankl, Asperger’s chief diagnostician. Despite this connection, Kanner never mentioned Asperger’s work in his papers, claiming the credit for discovering autism himself, and Frankl and Weiss apparently never spoke up either (Silberman implies that they may have kept silent because they owed Kanner their lives after he helped them escape Austria and obtain work visas in the US).

Kanner went on to establish autism as a specific diagnosis for children he believed should be institutionalized throughout their lives, in part because he blamed their parents, particularly “refrigerator mothers,” for what he saw as a severe mental illness in young children. Oddly enough, though he characterized this disease as “infantile autism,” he did not theorize, research, or even seem to wonder what happened as the children grew up – I suppose because they were institutionalized and forgotten by society. In my view, this left a conceptual vacuum in which later generations of parents could insert all manner of theories about toxins, causes, and quackery about cures and treatments that would “recover” their children from this “disease.”

Other key chapters of the book detail the history of how parent groups came to dominate the field of autism research and public awareness, much to the detriment of autistic children in most cases. Bernie Rimland was a big figure in that particular history as an early proponent of toxicity theories, biomed treatments, and what is known in the autistic community as “curebie” talk. Though his son grew up to be a happy, healthy autistic man with a full life, Bernie Rimland to his dying day expressed that he wished above all for his son to just “be normal.”

The chapter on the history of ABA (Applied Behavior Analysis, still the most popular therapy for autistic children) was also heart wrenching as Silberman laid out the work of its founder, Ivar Lovaas. Lovaas believed that autistic children literally were not people – that they were essentially human bodies without humanity. His work focused on shaping their behaviors in order to make them appear more like typical children, which he argued was the only way they could learn anything at all, often using harsh punishments such as electric shocks. His work is associated with the equally horrifying work of George Rekers, who used Lovaas’s techniques to try to cure young boys of “sissy boy syndrome.”

And of course, there are the crucial points in time when the DSM (Diagnostic and Statistical Manual of Mental Disorders) expand their definitions of autism in the 80s, and then add Asperger syndrome and PDD-NOS in the 90s (only to remove them in 2014), which, coupled with better educational standards and services, gives rise to the supposed, mythological, totally nonexistent “autism epidemic” of modern times.

These are the dark annals of autism history that autistic people usually know, while many parents and professionals do not or choose not to think about. So I was appreciative of Silberman bringing them to the light of day, and to a wide audience.

The rest of the book was rather weak.

That may be overly harsh, but when it came to actually showing his readership who autistic people are, how we experience the world, and what we need from society, the work just wasn’t there, which felt joltingly anticlimactic after the incredible detail of his research on Asperger, Kanner, and Lovaas.

I was baffled by the fact that there were entire chapters on ham radio operators and the making of Rain Man (NOT even based on an autistic person, gah!!), and almost nothing on autistic girls or women. Just as Silberman went through the history books to find famous male autistics like Henry Cavendish and Paul Dirac, couldn’t he have dug through and found even one autistic woman? I know that there were female ham radio operators and science fiction geeks in the 1960s, but none are mentioned. The only female autistic to get any play is of course Temple Grandin, whom frankly most autistic women are pretty tired of, because she is always the token Lady Autistic when in fact most of us don’t relate to her that much at all. I could name a number of more interesting and relatable and important autistic people who are NOT men off the top of my head, from Donna Williams (mentioned, but only briefly), to Cynthia Kim, to Lydia Brown (mentioned but that’s it), to Amy Sequenzia (how is she not in this book?), Ibby Grace, and more.

Also frustrating for me was that Silberman focused so much on tech, science, and math geeks in his autistic profiles. Newsflash, not all autistic people are into STEM. I do find those people interesting, sure, but autistic people are also writers, artists, social activists, teachers, therapists, parents, and many other things. I know Silberman is a tech writer and that’s his thing, but it’s misleading to focus on that one wedge of autistic interests to the exclusion of all others.

Furthermore, I was greatly disappointed in how he emphasized the autistic people who are geniuses, inventors, and people who change the world. Even when he profiled people who were pronounced “low functioning” as children, he chose to highlight the individuals who went on to demonstrate genius IQs or special abilities. The fact is, many other autistic people live ordinary lives, and many need a lot of lifelong support.

I was so disillusioned to realize that Silberman was never going to get around to pointing out that it is NOT the material achievements a person is capable of that make them worthwhile as people. This trope that autistic children are worthy of love because they have the potential to be brilliant engineers is so harmful. It leaves the door open for non-autistic adults to try to “recover” them and make them “more normal” while they are young, and it leaves disabled teens and adults who AREN’T brilliant scientists (and let’s face it, most people don’t turn out to be brilliant scientists) out in the cold without a place in society.

That is not autistic acceptance. In this way NeuroTribes fell far, far short of what I was hoping for.

I was left with the strange suspicion that Silberman was in fact reenacting a version of Asperger’s 1938 University of Vienna talk in which he emphasized the gifted autistics to an audience of genocidal eugenicists. Did he consciously, or maybe unconsciously, pitch us a package of autistic geniuses because his main audience is so antagonistic toward autism that he felt this was the only way to reach them? This might be the case, but in the end, for me, it’s not good enough.

Even so, and this may sound inconsistent, I would still highly recommend the book to everyone, absolutely everyone. The history here needs to be common knowledge. And when you are done with NeuroTribes, I suggest you visit Autonomous Press, where autistic people are publishing the work of autistic authors, to round out your reading.

Tendril Theory

Autism, Neurodiversity

I came up with “Tendril Theory” when someone in a support group asked for a good way to explain executive function, specifically the challenge of being interrupted or having to switch tasks suddenly, to a neurotypical person. The image and words came to me all at once. It took me a few weeks to sit down and draw it.

I think the reason this resonates with so many people is that a lot of different kinds of brains work in a similar way – not only for autistic people, but also people with ADHD, and neurotypical introverts. So if this doesn’t describe you, it probably describes someone you know.

TendrilTheory

*Image is a comic titled “Why it’s hard to switch tasks (Let’s call it Tendril Theory).” Simple line drawings illustrate the following text:

When I’m focused on something / My mind sends out a million tendrils of thought / Expands into all of the thoughts & feelings / When I need to switch tasks / I must retract all of the tendrils of my mind / This takes some time / Eventually I can shift to the new task / But when I am interrupted or must switch abruptly / It feels like all of the tendrils are being ripped out / That’s why I don’t react well / Please just give me time / To switch tasks when I’m ready.

Frequently Asked Question

Autism, Identity, Neurodiversity

The most common question I’ve heard since I came out as an autistic person is, what was it about you that made you seek an autism diagnosis?

I’ve struggled to answer this because I feel like it contains several different questions and I’m not entirely sure which one a person is asking me when they ask it. (You might take note that struggling to answer a question because I am somewhat paralyzed by having to choose from all the many answers that I could give… is part of being autistic!)

So maybe I can unpack all of the questions within the question and answer them separately. This is what I think people might really be asking me when they ask me, what is it about you that made you want to find out if you have autism?

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What are your symptoms? We want specific examples of how you are different.

This one might be the trickiest to answer because although I have always felt different from most people, I can’t think in terms of “symptoms.” Autism is my neurology, it’s the way my brain is wired, not something I “have.” So while I have always felt different from most other people, I’ve always just felt like me. Maybe it’s actually you neurotypical folks who are the weird ones. Ha!

It wasn’t really having “symptoms” that made me think I was autistic, it was seeing myself with crystal clarity in the experiences of other autistic women. But if you want some specific examples of how I think differently, well. I’ll try.

Sensory sensitivities were the first thing that came to my notice via Musings of an Aspie. Being too cold until suddenly I realize I am too hot. Being uncomfortable in my clothes, just, all day. Being on edge, angry, snapping at people, only to realize that there is a background noise that’s actually causing my bad mood. A lot of people have sensory sensitivities without being autistic, but I mention them because realizing what mine are and being able to manage my environment a little are key ways for me to feel good and do the things I need to do.

The longest running issue for me that has caused me the most pain in life is issues with social communication. Many people who read my blog and some on Facebook have mainly interacted with me via written word – this is where I am at my best, communication-wise. So the idea that I have trouble communicating may seem absurd. But verbally, in person or on the phone, I do. I wrote a whole separate post on that because it’s big and complex, but in a nutshell, I never really know what to say, what’s appropriate, what’s expected of me, where to begin and where to end, and a lot of times I just kind of shut down and go blank in social situations. This has always prevented me from achieving the kinds of connections I’ve desperately craved. And sometimes it is so discouraging or just plain exhausting that I don’t even try. So that can be challenging.

And the last area where I feel the most “different” is in executive functioning. I can detail that in yet another post, but the gist of it is that executive functioning is kind of the command center of the brain, the part of you that organizes, plans, prioritizes, executes, and manages all the little and big things you have to do in life. The simplest way to explain why executive functioning is sometimes a challenging area for me is that I get overwhelmed quickly, easily, and often.

But what was wrong, really – were you suffering?

That is a pretty personal question and no one’s outright asking it, but maybe it is implied. All I can say is, I was getting by, as I have always gotten by in life as an undiagnosed autistic. But I felt that getting by was not enough anymore as I have a husband and two kids who need me to do better than just get through the days. I have other family members I long to connect with more than I have. And I have things that I want to do that require me to get out of survival mode. Of course this diagnosis is for myself, but it’s also for all of the people who love me, and whom I love, too.

Am I autistic too?

There are a few people who are curious “what about me” is autistic because they think they might be autistic too. No, not everyone is on the spectrum, but certainly some people are out there who are undiagnosed but autistic. Women especially tend to be underdiagnosed and the big discrepancy in the numbers of male and female autistics is most likely due to underdiagnosis in females. So what I tell people who seriously think they might be autistic and seem to have a strong need to find out is, it’s worth looking into. I am really glad I did.

I also caution you that it can be expensive to get diagnosed, so look into what your insurance will cover, and women should try to find professionals who specialize in diagnosing women with autism, because not all of them recognize autism in women well. Autistic women are more likely to be misdiagnosed with depression, anxiety, OCD, ADD, etc. Don’t let that scare you off, but be aware of it.

If you want to read more, these links might be helpful:

Essential Reading from Musings of a Aspie

Underdiagnosis in Autistic Females from Seventh Voice

The RAADS-R is designed to be used in a clinical setting but you can try it at home

The Aspie Quiz is another interesting self assessment tool

But why did you feel the need to label yourself this way?

I suspect that what some people mean when they ask this question is, why would you want to be known as autistic when you can easily pass for “normal?” If you ask this, you are assuming that autistic is a bad thing to be, something no one would want to be if they had the option to choose. It’s not. And you are also discounting the stress and the depression associated with “passing,” which for me have come to outweigh the stigma of autism.

If you are secretly wondering why I would want to label myself, I understand why you feel that way, because I once felt the same, until I learned more about autism, which is widely and unfortunately misunderstood.

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Autism is not a disease or a kind of brain injury, it’s a neurological variant. It’s genetic, inheritable, and has always been part of the human species, but is only now being accurately diagnosed. It is also, however, a real difference in neurology and not just a personality profile. I’m not “just quirky,” my brain actually works differently from the neurotypical brain. It’s not better or worse, it’s just different. (Autistic self-advocates do not deny that autism can be disabling to varying degrees, but that still does not mean there is something “wrong” with any of us. Disability is a normal part of the human experience.)

So I feel a need to label myself this way because this is the way I am. I am not ashamed of it. Sometimes I am proud of it. But essentially it is a neutral facet of my being. Being my true self gives me immense satisfaction, as I think it does for anyone. Oprah made a cliche out of “Living Your Best Life,” but that’s because the idea of authenticity resonates with so many people. And for me, realizing, accepting, and declaring that I am autistic is a path to authenticity. Autism is not *everything* about me, but it’s an integral part.

So if you ask me why I want to label myself this way, to “come out?” – my honest answer is, why wouldn’t I? Why wouldn’t I want to exist in the world as my authentic self? Why wouldn’t I want people to know who I really am? Why wouldn’t I want to be free?

The only reason why not is fear. Every person who lives in a closet for one reason or another has to balance the fear of coming out with the pain of staying in. That fear has legit reasons so I don’t judge anyone for staying in. But I’m coming out.

Neurodivergent

Autism, Identity, Neurodiversity

ananswerYou may or may not remember that I made a passing mention, in a This & That post last fall, of reading and relating to a post on the blog Musings of an Aspie. What I didn’t mention after that was that I continued to read Musings of an Aspie, and I continued to see myself in Cynthia Kim’s blog, and it didn’t take me long to begin to really wonder, was I on the autistic spectrum after all?

Meanwhile, I was struggling to understand why I was feeling the way I was. Tired all the time, flaring up with a hot temper at the littlest things. It didn’t make sense to me that I was so exhausted and edgy and irritable even when I was getting enough sleep, even once I pared down my lifestyle to something very manageable and slow paced, even when I scaled back my workload, even as unschooling took a lot of pressure off my parenting, even though I basically love my life and have a great husband and good friends and adore my kids. Why did things still not feel right? And that dissonance was not a new feeling, as in postpartum depression, but something that I’d always felt to some degree, but gradually became too intense to ignore anymore.

In the months between then and now, I read and researched and learned a LOT about autism in women and how that looks different from what most people think autism looks like (for complicated reasons – I can explain more another time). I formed a support group for autistic women and women who, like me, were thinking they might be autistic, where we could share experiences and ask questions and sort everything out in a safe and supportive space. Those new friends of mine have been invaluable – I appreciate them so much.

Finally, I found a local psychologist who specializes in seeing autistic women, and I went to her for an assessment. It’s worth pointing out that this process can be very expensive and I wouldn’t have been able to do it if we hadn’t had the good health insurance that we do – I wish that more people had access to the psychiatric care they need, but it’s not always so easy.

I was incredibly nervous about the assessment – I felt vulnerable and even a little humiliated just by undergoing a psych eval – and was honestly scared that I would not get diagnosed with autism. Why? The idea of being autistic was like a missing piece in my life that suddenly made everything make sense. I was terrified that if it was taken back out of the picture, I would be left with the same old confusing mess as before.

But I did, in fact, receive a diagnosis of autism last week. It’s official. On the long drive home from my final evaluation appointment, I cried tears of relief and release.

I think I also cried a little for all the me’s I’d ever been – the shy little girl, the misfit teen, the lonely young adult – and what could have been if only I’d known then what I know now.

The psychologist also told me that my results showed chronic dysthemia, a low level depression that’s always been with me and explains a lot of why my energy level tends to run so low. In her view, the difference between neurotypical and how neurodivergent a person is tends to get “colored in” by depression and/or anxiety. This made a lot of sense to me as basically my efforts to meet the neurotypical world on its terms every day result in fatigue and vague sense of never being “enough.”

I know this will be surprising to a lot of people, and I understand why – I was surprised when I first realized that I might be autistic. I think this is largely due to the fact that very few people, besides people who are actually autistic, know much about autism – which several people have told me since hearing my news. But I can tell you that for me, it just means a huge weight has lifted off my shoulders. Knowing that I am, in fact, a perfectly normal autistic person, makes everything just slide into place. It’s an answer to a question I didn’t even know I was asking for the first 36 years of my life.