Posted in Autistic Identity

From the Archives: The View of Autism from the Cheap Seats: Cure Talk and Autistic Culture

Here’s another old blog I’m bringing back!

Yesterday, I heard someone say at school that she was signed up for the Autism version of some training the public school folk have to attend each year.  She’s our Title teacher, who comes out to work with kids, via the taxpayers.  I wanted to ask her if an Actual Autistic person was teaching it, but I’m selectively out at work right now; my colleagues who can help me know I’m Autistic, but my principal just officially knows my husband and son are Autistic.  She’ll do the math at some point, but for now, if I need help, my colleagues can help me pretty readily.  At any rate, this is an issue I’m forever concerned about: Autistic “training” for teachers that’s usually designed by people who believe in helping us “manage” our Autism by helping us to “pass” as neurotypical.  This ends up passing on a whole bunch of information that is, in fact, harmful to actual Autistics.

At any rate, early this morning, I was following tweets by the mind behind the amazing Aspie Mermaid about a class she was in with a whole bunch of nt folk talking about Autism.  They knew SO MUCH, yet they knew nothing.  They likely had been to some of these trainings I mentioned earlier.

And then the mind behind The Silent Wave tweeted about arguing about removing Autism from the DSM, and we batted some ideas around.

These events sparked this post, where I unpack a few myths about Autism from the so-called experts and what’s really true.

Come have a look at Autism, not from the “cheap seats” at those neurotypical-designed trainings, but right in the front row of the box (the best place to watch a musical) or the front row on the floor (the best place for other events!).

Myth #1: You can grow out of Autism.

This one’s going the rounds on the Twittersphere today, too, so it was an easy one to blog about.  Apparently there is this “study” that people can “grow out of” Autism since they stop showing the symptoms.  It does fit in with a medical model (diagnosis) in which sometimes people “test” as Autistic at times and other times they don’t.  This is one of the famed Jenny McCarthy claims (remember?  She gave her son Autism by allowing his doctors to give him a vaccination, and then cured him of it by going gluten-free!).

Here’s the truth: you are always Autistic or you’re always not.  Sometimes, though we go in and out of phases in our lives when we can “pass” as neurotypical.  This is a survival technique we all pick up to varying capacities.  In the end, being able to be Autistic one day and seemingly allistic the next isn’t unusual for many of us.  The real issue is that “passing” drains us and makes it hard to do the things that allistic folk may be able to do with wild abandon.  We suffer to be “normal.”  It’s a way of surrendering for us because it’s sometimes too hard to be ourselves and we think this will make life easier.  However, getting good at “passing,” in the end, is bad for us.  If we want the world to become more accepting, we have to stop pretending to be allistic.  If they think we can turn it on and off, they’ll demand we do so even at great risk to our health.

So, I get why we might try to pass as allistic, but, big picture, if we’re doing that, that doesn’t mean we’re magically no longer Autistic, and it may well mean we have a meltdown coming soon.

 

Myth #2: You need to be diagnosed to be Autistic.

A lot of people think of Autism as a medical disorder.  Autism, however, is merely a different way of viewing the world.  Autism doesn’t Disable people.  In fact, it is often our co-morbid conditions that cause the observable Disability.  Some, for example, have Celiac’s Disease, and for these individuals, going gluten-free can help manage the Celiac’s.  Managed Celiac’s disease or gluten sensitivity can make a person a heck of a lot happier and easier to be around.  So, too, can help with the executive function challenges present in ADHD (with or without hyperactivity, it’s still ADHD; there’s no such thing as ADD meaning Attention-Deficit Hyperactivity Disorder without the Hyperactivity).  In those cases, it’s ADHD or Celiac’s that are presenting the “condition.”

If you think about it, this is the same as for a Deaf person.  They can’t hear (or can’t hear as well as some other people).  That’s a condition.  The Disability comes in when society treats Deaf people differently.  They are not Disabled by being Deaf, but by society treating them differently.  They can manage their Deafness (the condition) in various ways the same way we come up with nifty executive function tricks and/or give up gluten, but until society changes, they will still be Disabled the same as Autistics will.

This societal maltreatment of Disabled people does not happen only when we get the piece of paper that says we’re “Autistic.”

We have ALWAYS been Autistic and we will ALWAYS be Autistic.  Whether it Disables us or not is up to society, not doctors and/or mental health providers slapping a label on us.

Therefore, we are Autistic from (for Catholics and other pro-life folks) from the moment of conception (for the rest of you, from the moment of birth).

We are Autistic because we are designed by the Creator to be this way, from the start.  That you don’t always “see” us as Autistic is not important, but it can be important if you tell us we are no longer Autistic because you can’t see our Autism anymore.  It’s there, whether you perceive it or not.

Myth #3: Therapies for Autistics ought to help them to fit into society as it is now.

This is a myth perpetuated by therapists who believe that they can cure Autism if they teach people to do certain behaviors.  For example, the old eye contact example.  Therapists force people to make eye contact because that’s what you do.

But…that’s not what you do if you’re from a culture where looking someone in the eye means you disrespect them.  Eye contact is not “default;” each culture treats eye contact differently.  In Autistic culture, I posit, that eye contact is not considered important.  In fact, it is suggested you avoid eye contact.  Autistics “listening” may well be sketching, looking away from you, lying on the ground and looking at the ceiling or any other thing that feels natural.  Some Autistics may offer eye contact, but honestly, I don’t hear a lot of support for eye contact in the Autism community.  What I do hear is that if an Autistic is looking you in the eye, he or she is not listening to anything you are saying.  He or she is focusing on when he or she can move because this eye contact thing seems uncomfortable and may even physically hurt.

So this means there are multiple issues at play: 1) we can’t even agree what is culturally important to force people to do and 2) even if we could, what good would forcing these behaviors on Autistics do?  If eye contact hurts them or makes them not listen to a message being transmitted, wouldn’t it be easier to just spread the message that some people don’t give you eye contact because their cultures do not assign value to eye contact as a show of respect and/or submission?  This would help Autistics, but also those who are from cultures who have assigned different meanings to eye contact.

We cannot fit into a society because we see (even if you don’t) that each culture has different norms.  We can do the best we can to meet you halfway, but honestly, why force us to do something that hurts us if there is no benefit to either party?  If you want us to make eye contact to show you 1) we respect you and/or 2) we are listening to you, this will be problematic because 1) we don’t consider eye contact to have any meaning in terms of respect or disrespect and 2) if we are listening, we are probably NOT looking at you.

Therapies for Autistics therefore must be like any therapy: Autistic-directed (what do we want to work on?) and come from a place of mutual respect (I trust you to help me to learn this skill because I want to learn it), not done “to” them to “fit in” and/or “pass for normal.”

After all, in the end, we’re always going to be Autistic, and passing helps none of us.

But it does help allistic people to ignore their own unearned privilege of being the “default” culture.

And I mean culture, because Autism is a culture.  We may be working on defining just what that is, but we’ve been passing it on from parent-to-child for a long, long time.  And while sometimes our people show up in families that are not Autistic (a “sport” in biology, thanks Madeleine L’Engle!), that doesn’t mean they’re not part of our cultural group.

The difference now is that we know we’re different and we’re not embarrassed about it.  Instead of “helping” Autistics by talks of “cure,” our allies can help us most of all by helping to spread the message that being Autistic is not a disease or a disorder; instead, it’s a culture.  It’s neither better nor worse than allistic culture; it’s merely different.

 

2 thoughts on “From the Archives: The View of Autism from the Cheap Seats: Cure Talk and Autistic Culture

  1. I fully agree that God made me autistic! Thank you for mentioning God in your blog.

    Eye contact is different in autism, and this can be a safety issue. (This, of course, is a problem with people who take advantage of others; not autistic people). Staring too long at someone can be dangerous. On the other hand, not looking at someone can cause a person to be oblivious to predatory behaviour from someone else. Safe eye contact needs to be taught in a respectful way (no “Look at me” chin shoving, which only encourages passivity).

    1. I agree, but part of my concern is the assumption that what Westerners do IS the right form of eye contact. If you’re with people from other cultures, eye contact has different rules, so what’s the sense of teaching us eye contact as “the rule” without the caveat that the rules can change depending on cultures? In that way we can legitimize the alternative culture Autistics have developed for ourselves as well as other, non-Western cultures, while still pointing out the safety issues in a Western, neurotypical population. So yes, it’s important for sure, but our culture’s version of ABA and other therapies don’t tell us the exceptions because they’re so mired in this perceived “neutral” Western culture that isn’t at all neutral, you know? If ABA were to be legitimate, it would have to, I think, start with recognizing the different cultural values we place on eye contact (and the like) and break it down for people. I’ve heard some Autistics will get books for actors to learn how to show emotions and there often is a little more awareness of differences in those books since it’s taking into account the situation, if it makes sense. Forcing eye contact, as you say, is not respectful, but I think it does a lot more damage when we don’t take into account how eye contact varies among cultures. We’re rules people…if you tell us a rule and we find out later it has a million exceptions, we’ll be very mad…and rightfully so!

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