disability rights

What Autism Safety Really Means

ableism, Autism, Disability, Education, Infographics, Writing

Last month I participated in a panel discussion on the topic of Autism Safety at a conference hosted by a local autism organization.

The two hottest takes when it comes to “Autism Safety” – in the “autism community,” that is – always seem to be wandering/elopement and police interactions.

Elopement or wandering refer to the problem of autistic children (not always children, but almost always) who run off unattended, often leaving an enclosed space like their home or school. And, as a parent myself, I do understand this worry – to an extent. Naturally the idea of one’s child getting lost and/or getting into dangerous situations takes one’s breath away to even imagine.

But in the grand scheme of an autistic life, how pressing is this issue really? Parent-led organizations sometimes run scary stories about the dangers of elopement. Recent studies have shown that about half of autistic children elope at least once, and half of those elope long enough to cause serious concern. That does sound worrying, but let’s keep this number in mind and I’ll return to it in a moment: 25% of autistic children have significant elopement incidents. Other factors to keep in mind: most of those children are nonverbal, and elopement peaks at age 5.

The other hot topic in safety is about police interactions. And while I whole heartedly agree that this is a key safety issues for autistic people, I find the ways that autism parent communities and neurotypical-led organizations discuss this issue tend to be highly problematic: most notably, that they ignore the racial issues at the heart of the danger. Skirting the autism-race interaction in conversations about police and first responders not only makes our conversations about safety incomplete, it also makes our proposed solutions severely inadequate at best.

What the parent community’s hot safety takes amount to tends to be a clamor for more neurotypical (NT) control over autistic people. Wandering? Police interaction? For NT parents and experts, the solutions are about GPS tracking devices, autism registrations, and more compliance training for autistics.

These solutions themselves are indicators of racial erasure. I think anyone who pauses for even one minutes to consider how those solutions might work for a black or brown autistic person could see how deeply flawed they are. How would a black family in America be affected by being in an autism registry or GPS service with their local police department? What kinds of issues might arise for a population that is already at risk of being racially profiled? What is the likelihood they would sign up for this voluntarily, given the downsides? Can you imagine a black autistic parent, or a Latinx immigrant family, being willing to be on such a registry?

And where to even begin with pushing more compliance training on non-white autistics. How well has compliance worked for black Americans historically in this country, when it comes to keeping them safe in police interactions? Eric Garner said it best: I can’t breathe.

My presentation on Autism Safety to my local community was cut short, as the moderator verbally nudged me to move on from the topic of safety – they mostly wanted me to list my credentials as a “self-advocate” and then sit down.

What I wanted to tell them is that NT parent/expert control of autistic people, stripping us of autonomy, and ramping up compliance training, all compound the most serious dangers we face in our lives. When parents, teachers, and autism “experts” have tunnel vision that focuses on autism itself as our main threat, they actively endanger us. I understand why they are reluctant to look at the real safety issues we face, because many of those issues are coming from them.

I’ll remind you now of the figure above that told us 25% of autistic children have seriously concerning elopement incidents, peaking at age 5.

Now let me tell you about what Autism Safety really means:

Abuse and Violence
  • Disabled children are 3.5 times more likely to be abused or neglected than non-disabled children
  • Disabled people are 3 times more likely to be victims of serious crime than non-disabled people
  •  Exact figures are unknown, but numerous studies have estimated that the number of people killed in police interactions who were disabled is at least 50%, and likely much higher as these calculations under-count people with psychiatric disabilities
  • Black people are nearly 3 times as likely to be killed by police than white people; therefore, we MUST include racial issues in addressing autism safety with law enforcement
Psychological Effects
  • 70% of autistic people also have a psychiatric disability such as depression or anxiety
  • 30-50% of autistic people have reported having suicidal thoughts or attempts
Bullying
  • 60-80% of autistic students report being bullied at school
  • 40% of parents of autistic students report their children were bullied
  • 22% of those who were bullied report being bullied “all the time”
Restraint & Seclusion
  • While only 12% of public school students are disabled (covered by IDEA), 75% of students restrained at school are disabled and 58% of students secluded and isolated at school are disabled.
  • 25% of arrests and referrals to police are disabled students – that means a disabled student is twice as likely to be arrested for a disciplinary incident at school.
  • Federal data shows public schools reported 163,000 incidents of students being restrained in one school year.
  • 40% of students restrained at school are autistic
  • 50% of students secluded/isolated at school are autistic
  • Of the disabled student population, only 19% are black, but they make up 36% of those who are restrained and secluded – this means that among disabled students, black children are twice as likely to be restrained and secluded
  • 7,600 of the incidents of restraint involved mechanical restraints (i.e. not restrained merely with school staff’s hands/arms)
  • Students were secluded in “scream rooms” 104,000 times in that school year
  • 20 public school students died while being restrained at school between 1988-2008
  • In many states (including mine), there are no legal restrictions on the use of restraint and seclusion in schools

Many of these risks to autistic children are much more prevalent and dangerous than the risk of elopement, and many continue to affect autistic people throughout our lives – as our high rates of depression and anxiety show. And yet, these are the dangers that are rarely discussed by parents and autism organizations. These risks do not seem to inspire as many panel discussions, safety curricula, training sessions, and special safety programs. Perhaps because, by and large, they require change on the parts of the everyone else but the autistic child.

Even more crucially, the parent/expert safety programs that are most popular – the GPS trackers, registries, and compliance training – actually put autistic people at greater risk to our real threats: abuse, victimization, discrimination, isolation, and psychological trauma. Trackers, registries, and compliance make us LESS SAFE. Worst of all, they will have the strongest negative effects on the segment of the autistic population that is already the most vulnerable – you know, the ones we never talk about? – those of us who are not white.

Of course we can’t wait around for mainstream culture to protect us, so here are some safety tips you can really use. And please see my Autism Safety PDF for more information and sources for all of the above statistics.

SAFETY TIPS
  • For Autistic People:
    • learn how to recognize and report abuse
    • learn what to do if you or someone you know is feeling suicidal
    • learn how to avoid interactions with law enforcement
    • advocate for community change that lessens the frequency of interactions with LE, and the risks of violence during interactions with LE
    • learn what to do if you get lost or need help in public spaces
  • For Families: 
    • learn to recognize and respond to signs of abuse, neglect, and bullying
    • learn strategies to reduce the risk of LE involvement and violence
    • learn to recognize and respond when someone you love feels suicidal
    • teach your loved one survival skills, including a safety plan for getting lost 
  • extra tip: medical ID bracelets are safer than ID cards or registries!

Social Skills for Everyone

ableism, Autism, Disability, Education, Friendship, Infographics, Neurodiversity, Parenting

This slideshow requires JavaScript.

[Each of the slides above has its own image description. Slideshow can be paused for ease of reading text. Full transcript at the end of this post, with a downloadable PDF.]

Issues of social inclusion are often persistent throughout a disabled person’s lifespan. Lack of inclusion can be a vicious cycle if non-disabled people are unfamiliar with how to include and interact with disabled people in their community:

1. disabled people are excluded, are segregated to disabled-only spaces, and/or withdraw from community life when they are socially rejected

2. non-disabled people continue to have social spaces and groups that have no disabled people in them, and they never become familiar or intimately connected with disabled people

3. disabled people continue to be rejected or excluded by non-disabled people who are unfamiliar with how to include us

And, REPEAT.

How do we break this cycle? Traditionally, most of the onus has been on disabled people to assimilate and “normalize,” but this not only doesn’t work well, it’s unfair and ableist. Mainstream culture is beginning to realize that non-disabled need to do more to include us without trying to “fix” us, but it’s crucial to understand that acceptance is more than just a feeling. It’s a series of actions, and for most it will require some learning and listening to disabled people.

I have a dream that parents of non-disabled children will begin to talk to their kids about disability, as early and as often as possible. Just as with other issues of discrimination, it’s not enough to trust that your kids will be “nice” – even nice, lovely, kind hearted children may discriminate against or exclude disabled children if they simply do not know how to include them, and don’t understand people who are different from themselves in ways that a child can easily perceive.

This guide is a start. Please please share it with your kids and talk to them about what disability inclusion means. It’s not about pity or charity, it’s about equality.

Social Skills for Everyone PDF

FULL TRANSCRIPT:

Cover.
Infographic cover has the title “Social Skills for Everyone,” subtitle “making friends and getting along.” Above the title are two human figures, one waving their arms with a speech bubble saying “hi!” and the other with arms akimbo and a speech bubble containing ellipses. 
Page One.
Infographic text says: “You might have noticed… there are all kinds of people in the world. no two are exactly alike. Not even twins! You probably won’t be friends with everyone you meet (and that’s ok!) but learning to get along with people makes life a little better for all of us.” One group of human figures is multicolored, with a green figure waving and saying “hello!” A pair of orange figures who look the same as each other stand side by side, one saying “I love drawing comic books” and the other saying “I don’t draw. But I love Minecraft!” 
Page Two.
Infographic text says: “There isn’t only one “right way” to socialize… Just like there isn’t only one way to play! Everyone has their own style – figure adds, ‘and I think that’s cool!’ – and learning someone else’s style is how you include someone new – figure adds, ‘and hey, remember… next time, the new person… could be you!’” Bottom image shows a green figure standing in foreground holding/touching their own head, with other figures in the background playing and one waving in greeting to the green new person.
Page Three.
Infographic text says: “When you meet someone new… it’s nice to greet them and ever nicer to invite them to talk or play with you.” Image shows two human figures in foreground and two more playing in the background. A green figure waves and says to the orange figure, ‘Hi, I’m Alex. Do you want to play tag with us?’ More text: “but what if they don’t answer?” The green figure stands with a question mark thought bubble, while the orange figure touches/holds their own head and stands with a thought bubble containing ellipses.
Page Four.
Infographic text says: “It might NOT mean they don’t want to play. Try this! Wait a few more seconds – some people just need a little more time to answer questions or think of what to say.” Orange figure has a speech bubble that says ‘…………okay!’ “Move so they can see your face – some people need to read your lips while you talk.” Two green heads in profile face each other, one with sound waves around mouth. “Ask in a different way – if they aren’t sure how to answer, using different words might help.” Green figure points to the side and says to orange figure, ‘He’s “it.” Let’s run!’ “Or maybe just try again later. They might not be ready to join in yet, and that’s okay too!
Page Five.
Infographic text says: “Some people do not speak at all (or not very much) but you can still include them! People who don’t speak communicate in other ways, like: Body Language! (orange figure in a variety of poses/gestures), using their voice in other ways (orange laughing face with speech bubble ‘hahaha!’) or even using an app on a tablet! (orange figure holds a black tablet which has a dialog box saying ‘okay. let’s play!’)
Page Six.
Infographic text says: “When you meet someone who seems different, you might notice that they look, talk, or act differently than anyone else you’ve met before.” A green figure stands touching/holding their own head with a question mark thought bubble. “It’s okay to ask polite questions.” A green figure asks, ‘Does that hurt?’ to an orange figure with a small red mark on their face, who responds, ‘No. It’s just a birthmark.’ More text: “It’s good to celebrate our differences AND remember we aren’t all that different on the inside – we all pretty much want the same things: to be accepted, to feel we belong, and to have fun doing things we enjoy.” At the bottom is a row of human figures: a green one with arms akimbo, orange one with heart-shaped birthmark, gray one waving arms, green one with headphones high-fiving a gray one with an orange wheelchair.

Ableism Therapies

ableism, Autism, Disability, Neurodiversity

Ableism Therapies

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

The only evidence backed treatment for ableism is listening to disabled people and learning from us.

Organizations

Twitter Hashtags

  • #CripTheVote
  • #ActuallyAutistic
  • #FilmDis
  • #AutisticWhileBlack
  • #TheFutureIsDisabled
  • #TheFutureIsAccessible

Awareness Campaigns

 

Intro: Ableism Awareness Month

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?

Ableism Awareness Wrapup Post

Is there a cure for ableism?

ableism, Autism, Disability, Neurodiversity

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

Is there a cure for ableism?

Effective treatments for ableism include:

Education

Everyone must make an effort to learn about disability issues and to examine and confront ableist bias ourselves and our communities. We all have a duty to understand and combat ableism.

Accessibility

Inclusion and accessibility are civil rights, not special privileges. It is everyone’s obligation to find out how to make our communities and spaces more accessible, and endeavor to include disabled people.

Intersectionality

The rights of disabled people are intertwined with non disabled people’s civil rights; our political activism, our votes, and our policy making should always be inclusive and intersectional.

Center Disabled People

Disabled people must be centered in our own lives and in disability advocacy; this means we have autonomy in our personal lives and we take the lead in disability rights organizations. Non-disabled people should have supporting roles as needed.

Sidebar has an image of two pills and the text, “There’s no magic pill for prejudice.
Remember, bigotry is NOT actually a disease!”

Intro: Ableism Awareness Month

Part 1: What is ableism?

Part 2: How many people are affected by ableism?

Part 3: What causes ableism?

Part 5: Ableism Therapies

Ableism Awareness Wrapup Post

What causes ableism?

ableism, Autism, Disability, Education, Neurodiversity

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

What causes ableism? 

* There is no single cause of ableism; rather, it is a complex and interrelated set of attitudes, assumptions, and prejudicial biases. Ableism develops from a combination of individual prejudice and environmental factors, such as widespread normalization of ableism, misinformation by ableist institutions, and societal lack of inclusion for disabled people.

* Some important risk factors for ableism are unfamiliarity with disabled people and ignorance about disability issues and disability rights. Tragically, an ableist culture that fails to provide access and true inclusion for disabled people has a high risk of worsening the ableism epidemic.

* Vaccines do NOT cause ableism; on the contrary, a large scale program of inoculation against ableism, through the inclusion of disabled people and education for non-disabled people, may protect individual people and major societal institutions from falling victim to ableism.

[Image has a graphic image of a syringe at left, and “erinhuman.com” at bottom right]

Intro: Ableism Awareness Month

Part 1: What is ableism?

Part 2: How many people are affected by ableism?

Part 4: Is there a cure for ableism?

Part 5: Ableism Therapies

Ableism Awareness Wrapup Post

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

What is Ableism?

ableism, Autism, Disability, Education

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

What is ableism?

Ableism is a cultural disorder that can affect people’s language and communication skills, social relationships, and other interpersonal behaviors.

Symptoms may include:

* Deficits in respectful, disability-inclusive communicate skills; may include the repetitive use of language that discriminated against or excludes disabled people, and a failure to provide communication access to disabled people.

* Deficits in social-emotional reciprocity with disabled people, ranging (for example) from lack of empathy toward disabled people to failure to include disabled people in social activities; in severe forms, may include abuse, homicide/filicide, and/or total apathy toward the abuse of disabled people.

* Restricted patterns of discriminatory behavior, for example: insistence on segregating, mocking, and/or abusing disabled people; unusual interest in “inspiration pornography” that objectifies and demeans disabled people, etc.

Ableism is any form of discrimination or negative bias toward disabled people or disability in general.

Intro: Ableism Awareness Month

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

 

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. We (yes I’m saying “we” because autism is a disability and I am autistic – it would feel weird to say “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 us, 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.

This story makes me angry and I’m on a long rant about this, but it’s my blog so I’m doing it. I haven’t been able to write in almost three weeks because this kind of shit is just relentless and it weighs on me.

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. Someday when you’re bored, or maybe right now, you can go to the “Autistic Resources” page of my blog, link at the top bar menu or right in this sentence, and read one more. And that’s just for autistic resources. 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.