KosAbility is a community diary series posted at 5 PM ET every Sunday and 5 PM ET every Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Today's guest diarist is codeman38.
Hello. I'm Cody, and I'm autistic. No, not a "person with autism"-- it's not something that can be taken out of me, and besides, that brings to mind the scary image of the Adipose from Doctor Who.
Well, OK. Technically, my diagnosis is Asperger's syndrome, because I did not have delayed speech development as a kid. But as of the current draft of the DSM-V, Asperger's is considered to be a subtype of autism. And I've found, in my experience, that I can empathize quite well even with 'traditional' autistics-- far more, in fact, than I usually can with non-autistics, though there are definitely exceptions. But I digress.
The reason I bring this up now? This month, April, is Autism Awareness Month. And because of the constant media attention on autism every April, I've noticed some interesting trends in what constitutes autism awareness. Indeed, it seems like some of the people who spread so-called awareness tend to be quite unaware of some of the details of autism themselves.
So, without further ado, the five autism misconceptions that I would love to see busted:
MYTH #5: Autism is primarily a social disability.
Everyone seems to talk about how autism is characterized by social and behavioral issues-- not reacting to other people's emotions, not interacting with others normally, lack of theory of mind, unusual behaviors like rocking and hand-flapping, etc.
And yet few people seem to pay attention to the sensory issues that frequently underlie these behaviors.
Lack of eye contact? At least in my case, it's because I find eye contact to be uncomfortable from a sensory perspective; there's so much input to deal with from the eyes!
Difficulty understanding and expressing emotions? Well, of course; to detect emotions in someone's face or voice requires a good deal of sensory integration; and you can only reproduce others' expressions upon interpreting them in the first place.
Difficulty learning language? It's possible that language is coming into the brain garbled, or that something else is interfering with that acquisition. I often have trouble deciphering words that I've heard until I actually see them in writing; I have to wonder whether being exposed to printed words also helped me make sense of spoken language. And in the recent HBO biopic on autistic animal scientist Temple Grandin, one scene shows Temple's mother attempting to teach the young Temple words as a child-- while Temple herself is completely distracted by the clinking of a chandelier that nobody else notices.
Rocking and hand-flapping? It's a method of relieving stress from sensory overload. It's also a way of providing controlled sensory input.
Shutdowns and meltdowns? I'm 27, and I still frequently shut down when there's too much sensory input to deal with-- lights that are too bright, noises that are too loud, etc. So it's easily understandable that an even younger autistic would do so.
MYTH #4: Speech is the same thing as communication.
I may not have had a speech delay-- but at the same time, I've never felt as if speech was my 'native' mode of communication, either expressive or receptive.
In my case, oddly enough, producing speech tends to be a bit easier than comprehending it. When I'm particularly stressed or tired, it can sometimes be a hassle just to get words together and utter them, but usually I'm pretty good with that. What's worse for me is comprehending speech; this tends to worsen much more quickly for me, largely because of the auditory processing disorder that coexists with my condition.
Yet that's not the case for everyone. I know of other autistic people who are great at comprehending speech, but have difficulty producing speech. I know of still others who have equal difficulty with both. But you know what? We're still able to communicate, in spite of all these differences-- because we mostly communicate online, via a textual medium.
It continues to amaze me how many parents try to force their children to produce speech when that may very well not be the ideal mode of communication for those children. There's writing. There's sign language. Heck, even visual art is a form of communication.
It also amazes me how many parents are so focused on getting a child to say "I love you" that they fail to notice the child's signs of affection in pretty much every other mode possible. Even in my own case, I tend not to express that idea much in words; even my instant messages with my girlfriend are filled with various emotes indicating affection-- hugs, cuddles, snuggles, etc.-- but very few utterances of those three seemingly magic words.
MYTH #3: High-functioning autistics have it easy.
Yes, I'm on the "high-functioning" end of the spectrum. I have an above-average IQ; I'm able to speak coherently; heck, I'm working on a postgraduate degree.
And yet? It's no walk in the park.
My visual perception is so scrambled and inconsistent that I can't drive safely-- and, when I'm really stressed, can even have difficulty crossing the street on foot safely.
My speech comprehension is extremely uneven, as mentioned above. Many people's voices I just plain can't understand over the phone, because of the distortion that occurs in transmission over the phone line. I can't hear a single person over a loud crowd; the "cocktail party effect" is completely alien to me. And when I'm really tired or stressed, even listening to speech in completely clear conditions can be like trying to decipher a foreign language.
And let's not even get started on things like executive functioning-- time management, organization, and so on. Ironically, I can keep stuff organized on my computer better than in the physical world (though I'm sure Apple's Spotlight search functionality probably helps with that!)
And the worst thing? Because I'm "high functioning," support for these sorts of issues is practically nonexistent.
MYTH #2. Autistics can't feel empathy.
Remember how, in the intro, I mentioned that I could empathize quite well with other autistics? This is something that I've noticed repeatedly in my online discussions on autism forums. So many of these people just make intuitive sense to me, in a way that most people I've talked to don't.
And yes, I can even feel empathy with neurotypicals. Frequently their experience is so alien to mine that there's nothing with which I can empathize, but there are definitely those with whom I've felt shared emotions.
The main problem is that I, and most other autistics, don't express empathy in the same way that a non-autistic would, nor even about the same things that a non-autistic would. And so, naturally, observers view this as a complete lack of empathy.
To make matters even worse, sometimes I'm so overloaded by emotion that it essentially makes me shut down, which of course means I won't express emotion normally. And it's not just me; there's actual research that supports this theory.
Other autistic people have explained this intersection of concepts even better than I can here; indeed, this particular myth is probably worth a whole post in and of itself. Jim Sinclair's "Some Thoughts About Empathy" is a good start. And Amanda Baggs' blog post "...knew the moment had arrived for killing the past and coming back to life..." not only discusses shutdown from emotional overload, but also touches on something else that I referenced earlier: that when autistics do show signs of empathy (e.g., affection), it often goes completely unnoticed by non-autistics.
MYTH #1: Autistics can't understand what you're saying about them, especially if they can't speak.
You'd think this would be obvious. Really, you would. But time and again, I see efforts at so-called autism awareness in which people make statements about autism that they probably wouldn't even dare to make about the condition of non-autistic individuals.
There were the Ransom Notes ads, in which autism was portrayed as a kidnapper who would prevent someone from being able to care for himself or interact with others for life.
There was I Am Autism, a video produced for the organization Autism Speaks by Alfonso Cuarón, which took the "autism as kidnapper" rhetoric to even more ridiculous extremes-- claiming that autism "work[s] faster than...AIDS, cancer and diabetes combined," "rob[s] you of your children and your dreams," and "make[s] sure your marriage fails"-- all set to contributed video footage of autistic children and adults who seem perfectly playful and contented.
And there was Autism Every Day, in which a parent candidly talked, in front of her own daughter, about having been so frustrated she wanted to drive off a bridge with said daughter-- a daughter who was both speaking to her mother and showing signs of affection throughout the video.
These may be the most blatant examples, but this sort of thing manifests in ever so subtle ways.
How many times have you seen materials talking about how autism is something to be "beaten," "fought," or "battled"? And how would you interpret these expressions if you were an autistic child with an overly literal, visual mind-- particularly if you viewed autism as something that was an integral part of yourself?
This sort of rhetoric even shows up in articles that are otherwise quite good. A recent Huffington Post blog by Liane Kupferberg Carter made some very valid points about how there's so much vitriol in discussions about autism, and how we can do better... and then ends it with the following statement which in itself is quite divisive: "We aren't the enemies. Autism is."
Autism is something that needs to be understood better, definitely. It's something that may have detrimental effects that need to be addressed, sure. And it certainly can be difficult to deal with, even for those of us on the so-called "high-functioning" end of the spectrum.
But autism, as a whole, the enemy? You want to abolish the thing that gave Temple Grandin amazing insights into the animal world? You want to abolish the whole spectrum of conditions that made Daniel Tammet into a mathematical genius, that gave a creative spark to musicians like Gary Numan and Ladyhawke, that helped Vernon Smith become a Nobel-winning economist?
I, for one, beg to differ.