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The Autism Spectrum According to Autistic People

Autism neurodiversity

Social Stories for Autism and the Harm They Can Cause

a young girl with a shaved head is working on a project in a classroom. there is racial and ethnic diversity among the students and the teacher. article is about autism and social stories being harmful for disability rights.

Many therapy providers and educators use or recommend social stories for children with disabilities, especially for autistic children. In fact, they were created in 1991 by Dr. Carol Gray specifically for autistic kids, to teach them social nuance and interaction and how to react in unfamiliar situations.

Social Stories, as they were originally intended by Dr. Gray, have very specific criteria and are supposed to be individualized to the learner so that the narrative has a specific person as the main character; however, most people have taken the idea of social stories and have created generic social stories to be used with autistic kids– often to modify behavior.

This was not Dr. Gray’s intention, and social stories used in a way that is well-informed could be very effective in helping reduce uncertainty.

Mass-produced social stories have as their foundation a fundamental lack of understanding about what autism is. We are all vastly different, and our subjective experience makes our needs and reasons for anxiety different, too.

But mass production of social stories also allows for a potentially helpful tool to be used as an ableist and coercive method to convince autistic children that they are always responsible for how they are treated.

While I’m sure there are some wonderful social stories out there, I doubt that most people will be able to spot exactly why the majority are so harmful– especially the ones that are mass produced. That’s the kind of insight that comes from experience– or from listening to people with experience.

Luckily, everyone has the potential to fit into at least the latter category.

Listening to Own Voice Words of Caution

These social stories often contain subtle messages that encourage the child to be more like their peers, to seek the approval and pride of authority figures, and to take responsibility for how others treat them. Social stories even tell children how they are supposed to feel, and why.

When autistic adults see these social stories, they can immediately spot the problems that others often miss. For example, the images below were shared with NeuroClastic by a concerned mother. Her autistic child had been put in a “social skills” class. These images are from a social story about not interrupting.

Image shows two kids playing a board game and looking disappointed. A third kid is waving at the other two and smiling. The text at the bottom reads: "I may want to talk to my friends when they are busy playing. But, I will wait until they are not playing anymore. Then, I will talk to them."

Here it is with my re-write:

Two kids are playing a board game and looking disappointed at a third kid, who is waving and smiling at him. Image reads at the bottom: Kids make room for other children when they are playing, but they don’t seem to want to play with me. I do what other kids do, and they are nice to the other kids but mean to me. The adults in my life don’t talk about inclusion and neurodiversity and embracing differences. Instead, they tell me I’m being bullied because I don’t have good social skills.

Posting this to Twitter got a strong emotional response from many autistic people who agreed:

Like this one:

This autistic person was bullied so badly that they were left with physical scars:

Here’s another one:

Image shows a girl at a desk and a teacher painting and smiling. The caption reads: "I will make good choices when I have something to say. I will keep my voice, hands, and feet quiet if it is not my turn to talk."

And the autistic interpretation:

Or this:

Image of two children painting and a teacher standing off to the side, smiling. Image reads: When I listen to my teachers and follow their rules, they feel happy with me. I feel happy too!

And the autistic interpretation:

When I listen to teachers and don't seek clarification, I don't always understand the rules. When I ask questions, they seem annoyed. If I don't ask, I get it wrong and they say I wasn't listening. They think I am not listening when I am trying hard to understand and am supposed to also pretend to be happy when they cause so much anxiety.

The Memories of an Autistic Childhood

Even for autistic people, like me, who weren’t diagnosed until adulthood, we have experienced all of this and will remember with traumatic clarity the constant mixed messages, the pride from adults for “behaving” in ways that seem unnatural, the shame at always getting it wrong no matter how hard we try, and the confusion of never knowing which contradictory rules we were supposed to follow.

Because being an autistic child is the exhaustion of carrying a million rules in our working memory, rules that make no sense to us, at all times other people are around.

Being an autistic child is the joylessness of being so afraid of getting one of those rules wrong that even the days we were supposed to be the most happy– at a party, on a field trip, going to an amusement park– we were so drenched in anxiety that we were on the cusp of melting down before we even arrived.

Generations of Abusers

I’m a Gen Xer, from that era of protest hip hop and alternative rock, counter culture, and general social rebellion. My high school era saw the rise of the flannel shirt army and goth couture. It was probably one of the best times to be an autistic teen because people were essentially aspiring to be us.

But, for all our aspiration to be edge and forward-thinking, we were horrifying– and our parents were worse. People told flippant jokes about Ethiopians, Jews, Polish people, Catholics, and queer folk. The words “r*t*rd” and “f*gg*t” and “gay” were thrown around as general-purpose insults to anyone for any negative quality. People made hand movements like someone with a movement disorder (the same way Trump did towards a disabled reporter) to indicate they were “stupid,” as if any disability means intellectual disability, and intellectual disability is an insult against someone’s value.

We made fun of kids for wearing glasses as children: “four eyes.” “Short bus” was an insult. We played “cowboys and Indians,” orchestrated by our teachers. Racism, misogyny, and xenophobia were was casual and brazenly embedded into the curriculum.

Change Doesn’t Equal Progress

Times have changed, but the impact hasn’t. The same biases have just been nested in euphemisms (handicapable, special abilities, special needs, differently abled) that are still othering and put all of the onus on autistic and other disabled people to be responsible for how cruel the world is. That’s called bullying and victim-blaming, only now it is couched in PC language so there is enough plausible deniability to make it harder to get anyone to care.

The truth is, marginalized people are at the mercy of how much bad behavior the majority tolerates in the effort of “keeping the peace” and being polite.

Social stories should be for the whole class, because that is what inclusion means. They should focus on the values that drive cooperation and embrace difference. Social stories should encourage inclusion, and that means trying to find ways to include everyone and addressing those most likely to create a culture of exclusion.

Hint: It’s not the disabled kids who are preventing accessible learning. Why are the stories always directed at them?

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7 Responses

  1. Aw man, their editor accidentally sliced off the rest of that sentence, “When I listen to my teachers and follow their rules, they feel happy with me because that way they can get out of the day with applying minimal thought and effort to the job they are getting paid to do.”

    (Ya know, there is a slight possibility I might be just a little bit jaded after having had in a previous decade in a different city a model railroading friend whose wife was an attorney who specialized in taking government schools to court to force them to finally follow government rules about disabled students. Was it good or bad that she never had nothing to do?)

  2. Yes, yes, yes. Many thank you-s for writing this. I am concerned that these social stories teach compliance in isolation from other values. No checking for “am I at risk” in this situation for example. This increases the child’s risk of bullying and violence that extends into domestic and sexual violence for adults, particularly adult women. As well as abuse in the workplace. A recipe for disaster.
    I am now 69 diagnosed just over 2 years ago. Makes me a baby boomer I guess. Heard all the types of derogatory language you mention as a child. Still not much changed it seems. Still the same intolerances and abusive behaviours. I am appalled by these social stories when as a woman who worked in domestic violence services, we did counselling and group work with survivors to undo this kind of compliance in women and girls so they wouldn’t allow themselves to be abused again.

  3. These aren’t social stories. Social stories are made collaboratively with the student. They aren’t cookie cutter like this. They are made with and often by the student. Perhaps save the outrage for actual institutional abuses?

  4. The other side of the stories needs to be told to include how to respond to child abuse, bullies, sexual abuse, self-defense, etc

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