It All Depends On What You Mean

August 20, 2006 at 12:24 am (Autieparenting, Autism activism, Commenting on NT comments, Ethics, Labeling, Medicalizing, Police and autistics, Social skills, The concept of functioning, Theory of mind, Triad of impairments)

While surfing the Hub the other day I came across an article on Whose Planet Is It Anyway? titled, Alone In Autism. Before I begin, I’d like to thank The Autistic Bitch From Hell for finding this article and for being, to my knowledge, the first among hopefully many to comment on it. I don’t usually thank people for finding articles, but this one was so interesting to me because of all the commentary and blogging that it generated. I really liked the surprise entrance of Mary Grace Mauney into the discussion. It’s always nice to get to read what the subject of an article really thinks and feels, rather than just walking away with an impression of that person that is largely manipulated into existence by the way the article is written.

The article itself I didn’t care for–neither the writing style nor the misinformation. Think of the sad, slow, rickety, and distorted music, as well as the strange lighting and camera angles, often seen in commercials and other visual campaigns designed to educate the public about the tragedy of autism. The following is the literary equivalent of that:

“Haunting blue eyes”–Mary Grace is made to sound very ghost-like, rhythmically haunting her swingset.

“Splayed legs back”–I hear overtones of “cripple” here, message being that autism is a crippling disease.

“Until gravity pulls her down”–She cannot “leave earth” like she wants to, maybe to go back to the planet she came from?

“It’s time to return to reality”—Her desire to “think about things” or “forget about things” means she is lost in unreality.

The writer, Alyssa Abkowitz, suggests that it is time to return to reality. In fact, it is. But instead of doing that, she goes on to “educate” the reader about autism, not only throwing out statistics but also either injecting her own feelings about what it is like to be autistic (presumably she is not) or by simply regurgitating the language about autism found in the mainstream media:

“She suffers from autism.”

“In the ’90s alone, instances of autism rose 172 percent.”

“It carries a variety of symptoms.”

“Some, like Mary Grace, suffer from a lesser variation known as Asperger’s disorder and can learn to function in society.” [Meaning, plain old autistics cannot.]

“Scientists don’t know what causes the disease.”

The overarching message of this article seems to be that “lack of social skills” is in fact the “disease” in question, but the definition of “social skills” seems to keep shape-shifting depending on what any given person is talking about, not only in the article but in the comments section.

The concept of social skills brings to mind the triad of impairments, a set of behaviors that are used as benchmarks for describing autism, including Asperger’s syndrome. If you look at the three “impairments” and how they are described, there can be vast differences in interpretation of everything listed, depending on who is seeing the behavior, who is exhibiting the behavior, what culture the person lives in, the varied circumstances of a family, and what is valued and devalued by a family, a school, a community, and so on. In fact, the triad of impairments can all be reduced to one broad impairment according to nonautistic people: “Lack of Our Social Skills.”

Social and emotional

Difficulties with:

• Friendships
• Managing unstructured parts of the day
• Working cooperatively

All children have more or less difficulty in one or more of these areas. If you look at any parenting magazine on any given month, there will be an article or some letters to the editor with some parent whining about her child’s difficulty making friends or keeping friends. Now let’s look at the second one: “Managing unstructured parts of the day.” Every child needs some kind of structure, and plenty of nonautistic kids get into trouble when they are unsupervised. As they get older, the “unstructured parts of the day” between the time kids get home from school and the time parents get home for work are ripe for risky behaviors such as taking drugs and having promiscuous sex. Working cooperatively: That could mean anything from “Doing whatever adults tell you to do” to “Being a team player.” Again, not very specific. America allegedly values the “rugged individual,” but the evidence says otherwise. Children who follow all the rules and play nicely with others are the ones who are rewarded. What people don’t realize is that sheepishness seldom leads to greatness or social change. As Laurel Thatcher Ulrich said, “Well behaved women rarely make history.”

Language and communication

Difficulty processing and retaining verbal information:

Difficulty understanding:

• Jokes and sarcasm
• Social use of language
• Literal interpretation
• Body language, facial expression and gesture

There are NT people who don’t understand my jokes and sarcasm either. I would never think of them as diseased because of that. I think of it more as two people speaking a different language. “Ability to understand jokes and sarcasm” should not be a prerequisite for being considered a fully nondiseased/nondisordered human. It’s like the time I was fretting on the phone to my mother over one of my kids’ not being able to swim yet, or the time I made a comment to her about my sister’s not being able to drive yet. My mother can neither drive nor swim, and she didn’t even understand why I was making such a big deal about those things. She said there is no law that says a person needs to know how to swim or drive. If they can’t swim then they don’t need to be in a boat on the water. If they can’t drive, they can take a bus. What is the big deal? To me it seemed like a big deal because it seemed like this is something that most people should know how to do. She made me see how silly my ideas were and how they only came from my own point of reference. I am a suburbanite surrounded by families of people who swim and drive. She is a New Yorker who is not near any bodies of water and takes the bus everywhere. Not being to understand an NT’s “body language, facial expression and gesture” might not always be such a bad thing. Maybe this shields some people from the hurt they might otherwise feel from rolled eyes, a quiet snort, sidelong glances to someone else that mean, “Loser.” There are many times that I feel glad that my autistic son tends not to pick up on those subtle things that people do to him all the time when he is trying to talk to him. He can’t always tell when someone is giving him a dirty look, and he will keep trying to talk and be friendly. And there are times when I feel sorry that I can pick up on those things and I am able to discern how others feel about my son. It’s a shame that I have to tell him so many times while we are out in public to mind his own business, be unfriendly, not wave to strangers, and not make eye contact in order to shield him from the scorn of people who have faulted him as an autistic for not caring about other people’s business, being unfriendly, invading personal space, and not making eye contact. The contradictions are maddening.

Flexibility of thought (imagination):

Difficulty with:

• Coping with changes in routine
• Empathy
• Generalization 

I think it’s interesting that this particular source did not use the expression “theory of mind.” It could be that that term has fallen out of favor as it became clearer that autistics have a greater theory of mind than was initially thought, or that NTs’ theory of mind might not be so hot either. Time and space do not allow for how many “theory of mind” violations NTs have made in interactions with me, or how many times NTs have shown a lack of empathy toward a situation I was in or toward what I was trying to say about something. If autistics have trouble generalizing, I would have to say that NTs tend to have a habit of overgeneralizing. Need I say more? But “imagination”? Can they really be serious? I think autistic people are highly imaginitive, and imagination is not the same as “playing dress up and having a pretend tea party.” At least not in my book, anyway.

Considering how highly subjective all of these impairments can be depending on one’s perspective, and considering that the alleged impairments are what are used to describe autism, the whole concept of autism as a disorder unravels if the impairments aren’t as important as they are made to be, not universally important, and not integral to the definition of what makes a person a human. But the author takes it one step further. We call autism a difference; many call it a disorder. She calls it a disease, which medicalizes autism and makes it seem like it is treatable, as though autism is something that just “happens” to a person sometime after birth, a disease caused by a virus, a poison, a bit of radiation in the atmosphere, bad water, you name it. She uses the word “disease” as though everyone knows that it is one, and yet deeper into the article we read this (emphasis mine):

It’s tough to find a cure for something when no one knows what causes it.

The chief suspect for causing autism in the minds of many parents and some doctors is thimerosal, a preservative that contains mercury that was once used in most vaccines. There is substantial anecdotal evidence that young children who appeared normal suddenly developed autism after they received vaccinations.

For every study that seems to suggest autism is linked to high levels of mercury, another one suggests there is no connection. Could it be genetics? Research suggests it might be a factor. Is it some chemical that we’ve unleashed into the environment?

The fact is, no one knows for sure.

My suggestion to the writer is this: Since no one knows for sure, it is best to lay aside the word “disease.” The word implies one or both of the following: (1) It is communicable; (2) Left untreated, it will get progressively worse; and (3) It can kill you. The first and third are simply ludicrous despite the myriad comparisons of autism to diseases such as AIDS and cancer, and the second cannot be proven true in every instance, and actually is rarely the case. Not only that, but “treatment” is just as controversial and slippery a term as “social skills.” Some treatments cause permanent emotional and physical scars and even death; other treatments are none other than extra attention to the autistic individual and specific educational programs repackaged as “treatment.”

I read with interest the two different accounts of autism from opposite ends, according to common perceptions, of the autistic spectrum. Blake Dees, who is depicted on the far low-functioning end of the autism spectrum, is described as a child who did not meet his developmental milestones and was clearly autistic by age 2.5. Today, at age 18, Blake self-injures by banging his head into the floor and into the walls. He is forced to wear a helmet for this reason, and he is even shown being fed through his helmet (an image that I found very disturbing; it did not seem to make sense to me that he would be headbanging while wanting to eat). He sometimes flicks his face and pinches himself to the point where he makes himself bleed. Blake injures others by pinching and biting to communicate. He bit his mother’s toe so badly once that she got a staph infection. He rips out his brother’s hair in clumps. He is nonverbal and totally dependent on his parents and the staff who work with him.

From this scenario, here is what I have extracted from what the author and family might mean by having social skills:

• Being able to talk
• Not self-injuring
• Not injuring others
• Being able to live independently as an adult.

In the next scenario, we are given some of Mary Grace’s background as a child. She is depicted as the far high-functioning end of the autistic spectrum. She had a favorite dress she wouldn’t take off. She enjoyed experiencing different sensory input beyond what a normal child would notice, let alone enjoy. She would bend down to smell asphalt and would rub its rough surface. She would melt down after keeping it together all day long at school. By third grade, however, she began to show signs of classic “school failure” and/or “emotional disturbance,” including fighting and running out of the building. She had suicidal ideation and was medicated for depression. Diagnosed with Asperger’s syndrome that year, she slowly began to understand her “problem” and set out on a journey to fit in with normal people and conventional society. She attributed her “depressive symptoms” to the Asperger’s syndrome and not to plain-old depression or depression induced by the relentless imperative to fit in. She still feels impaired by the way she gets easily flustered in social situations, by the fact that she still feels different, and by the fact that she is afraid to drive because she might get lost. In her comments, she describes a perennial quest for self-improvement because, after all, society is not going to bend to meet her needs. They need to bend halfway and she needs to bend halfway. Both need to meet somewhere in the middle. She presents herself as a pragmatist.

From this scenario, here is what I have extracted from what Mary Grace might mean by having social skills:

• Being able to manage anger and frustration by not acting out
• Being able to look people in the eye when they are talking
• Being able to fit in with nonautistic people and be accepted by them
• Having finesse in social situations; not getting flustered
• Not being among, in her words, the “‘wierdos’, living alone with their tics and obsessions”
• Having self-control; not being a slave to her own behavior

Like Ballastexistenz, I came away with the sense that the main thrust of Mary Grace’s comments (not the author’s, who has a medicalized view of autism; the clash between that construct and Mary Grace’s is fascinating)  was that autism is merely a difference in social skills. Ballastexistenz commented:

Autism is not merely a difference in social skills. I have never met a person who upon looking at me could not tell there was something seriously different about me. No matter how much I “improved” (does that mean, “made more like non-autistic people do it” or does it mean “actually made more functional,” because those are two radically different things?) my social skills, I would still appear autistic, because I still have the differences in perception and so forth that cause my appearance to unavoidably be as “very different in some way”. The extent that hiding is impossible to me means the police sometimes pick me up when I’m going down the street to the convenience store. Because they don’t think someone who looks like me should be out by themselves. I know some auties can pass, but don’t cast all auties into a group who “could just ‘improve’ and look normal if they tried”. Some black people can pass too. (Not that there are not differences — which is why I use the analogy so little — but that is not one of them.) Read up on the disability rights movement and the impact of ableism on society, including who gets viewed as disabled in the first place, before assuming that we should just blend in and all our problems would be over. That said, whoever is looking at you for signs of DSM-IV criteria is being as prejudiced as anyone.

I keyed in immediately to Ballastexistenz’s essential question: What do you mean by “improved,” or in other words, “What do you–Mary Grace–mean by social skills?” Ballastexistenz identified two areas that could fall under the umbrella of social skills:

1. Made more like a non-autistic person

2. Made more functional

I followed right behind her with this comment:

I agree completely with Ballastexistenz’s post. I think she rightly points [something] out by asking the question, and not a rhetorical one: “Does that mean, ‘made more like non-autistic people do it’ or does it mean ‘actually made more functional,’ because those are two radically different things?” I think there is (at least) a third prong of what is meant by “social skills,” and this happens to be something I’m currently focusing on/dealing with in my 12-year-old autistic son. He does certain things that could put him in jail if they continue into adulthood, and this has nothing whatsoever to do with (1) my wanting him to be more NT and to fit in with that crowd; or (2) his being more functional in the sense of independent living, if that is what is meant by “functional.” My son’s independence skills are excellent for his age. He has a great sense of safety and responsibility. The social skills I’m trying to teach him are skills that will help him stay out of prison under the charges of assault, indecent exposure, and deviant behavior (none of which would be true, but an unsympathetic judge might not care). That is practically my only concern with him. I don’t care a whit if he fits in with NT society, and frankly he doesn’t care either. He is very happy with himself and his interests. So, I can neither agree nor disagree with Mary Grace’s statements, because it all depends on what she means by “improvement.” It is clear that Mary Grace wants to fit in with her peer group. That is her right to want that; not every autistic individual wants that. This is not the same as actively seeking and promoting a cure for autism, and in no way does it change the course of autistic advocacy for one individual autistic person to want to fit in with her peer group. In this case, it doesn’t even constitute self-hatred, because Mary Grace likes many aspects of her AS that make her different and gifted in certain areas. Her main issue seems to be those who don’t want to talk about any aspects of ASD that are difficult or disabling and who only want all people, including autistic people, to discuss autism in a positive light. A completely separate issue is how this article was written and the misinformation in it, especially against the backdrop of recent advertising and film put out by Autism Speaks.

What I find fascinating is that as we began to really pick apart the concept of social skills, and asking what Mary Grace means by social skills, even Ballastexistenz and I ended up having different ideas on what “functional” or “functioning” meant. I was looking at functioning from the angle of Blake’s story, interpreting it to mean “self-help skills” and “ability to live independently as an adult.” Ballastexistenz, however, was looking at the term from a more concrete level, as in “What makes my operating system run most efficiently regardless of outward appearances?” She commented:

What I meant by actually functional, is in terms of form and function. For instance, eye contact, in many Western cultures, makes people think you’re listening to them. But for both autistic and non-autistic people for that matter, it impairs the ability to listen. It is more functional not to look at people’s eyes, but considered more “socially skilled” to waste a lot of energy looking at them or trying to look like you’re looking at them. It’s like a friend of mine put it: We don’t need the skills it takes to be normal, we need the skills it takes to be different.

My understanding from what she is saying here is that there are things that society values as being a social skill that actually make people less functional (i.e., perform less efficiently). So, when you look into a person’s eyes while talking to them and listening, you are taxing many different mental and emotional things and overloading your ability to process information. If you avert your gaze, however, this can help you retain more information unencumbered by the intrusive feeling of the eyes, or the confusion about the meaning of the constantly changing facial and body expressions of the other person, or the worry that you are saying too much or too little. The information exchange can get lost in all the other stuff that is going on…by why bother if it is not something that comes naturally? The mandate of Western culture to look into another person’s eyes is nothing more than a social construct that has no basis in morality or necessity. And yet skills such as these are considered by many to be among the pinnacles of human achievement.

So here’s what I had so far for “social skills”:

1. Made more like a non-autistic person

2. Made more functional: (a) Made to operate, execute, perform one’s mental faculties more efficiently; and (b) Made to operate, execute, perform one’s activities of daily living more efficiently and independently

3. Made to remain outside of the legal justice system by learning how not to break the law

The examples I gave of the “third prong” were not meant to be lurid or sensationalistic. I share Mary Grace’s pragmatism in that if something is, it just is, and there’s no point trying to paint a rosy picture of something in order to promote the broader agenda of a cause. Teachers and principals have accused my son, at the tender age of twelve, of “exposing himself.” In fact even my mostly NT son at age five–yes, five–was accused of, and I quote, “exposing himself,” when he mooned some boys in the boys’ bathroom because they kept opening up his bathroom stall and laughing. My son got in trouble for mooning, but that’s not what made me so angry. It was the term “exposing himself.” This term is a major trigger for me now, because while my NT son never did this again, my autistic son has done this repeatedly since entering into puberty. He already has so many cards stacked against him just by virtue of his being alive while autistic; this new “behavior,” if you will, just makes it all the more difficult. Whenver I hear this term in reference to my son, I make a big stink about it because I will not have my autistic son painted as some kind of a pervert, because he is not.

As I posted to Mary Grace, no I’m not seeking to turn my son into an NT and teaching him to “make more eye contact” or fit in so others will accept him; no, I don’t have the same issues with my son as the Dees have with their son; no, I am not worried that my son will not be able to live on his own some day, get a job, meet people, etc. However, I am greatly concerned about his current behaviors surrounding his own body and the bodies of others, as he is showing an increased awareness of his sexuality. Society will not accept that he is just displaying a “natural curiosity,” and I have been warned that the powers that be in middle school and beyond are far less likely to look the other way when he does things that the rest of society considers shocking at best. I am disturbed by cases I have seen in the news of autistic or autistic-like behavior landing people in jail. The train guy and the doorknob guy come to mind. The first was trying to drive them, and the second was stealing them and collecting them. I am not ashamed to say that I don’t want my son to end up in jail, and I want to give him as many tools as I can to help him avoid situations that will get him picked up by the police.

In my comment to Mary Grace, I wrote: “I think there is (at least) a third prong of what is meant by ‘social skills.'” As I was writing that comment, I was already thinking ahead to the fourth prong: Ethics. This is a social skill that I consider to be vital to being a human being (unlike the other three), but a skill that is apparently so undervalued that it didn’t even make it into the Triad of Impairments. What does ethics include?

• Justice not only for oneself, but for others

• Consideration

• Not being intrusive, not violating people’s privacy

• Not accusing someone of lying without any proof

• Not tearing someone else down for the purpose of building yourself up

• Not shouting down other people’s ideas and opinions, especially when those ideas and opinions are not harmful

• Not being mean, meanspirited, divisive, angry without a cause

• Not causing harm to others, including discrediting, silencing, imprisoning, isolating, and torturing

These ethical skills are generally deficient among people in general, NTs and aspies alike, when it comes to the treatment of autistic people as a group. For instance, take some of the comments to this article. Mary Grace, a strong-minded young AS woman with a lot of ideas that I don’t entirely agree with, was publically discredited and her authenticity as an AS woman questioned…maybe because she was well-written and didn’t seem “impaired” enough? 

Another Mary wrote to her:

I have AS, and to me you don’t sound like someone with AS. Impairment in social interaction has to be profound, not simply that you can’t deal with people sometimes. So let me understand, you don’t know who diagnosed you, whether they were qualified or not (I guess this was never a topic of self discovery for you). You wrote “I had a truckload of impairments, but since no specific area is mentioned, I don’t know if they applied.” Exactly what were you referencing when you wrote that, a diagnosis? Where were your impairments mentioned? I can’t diagnose you from the article, thus the question “I’m missing something…..From the story, I don’t see how you met the DSM-IV. I agree, not even a trained psychiatrist (trained specifically in PDD) could diagnose from anything mentioned about you here.

A guy named Kent wrote:

Mary Grace, AS, uh, I don’t think so. Unless I’m missing something, exactly how were you diagnosed and by whom? From the story, I don’t see how you met the DSM-IV criteria for AS, perhaps ODD, but AS?

In my book, it is unethical to (1) call someone a liar without proof, (2) discredit their words and experiences because they differ from one’s own, and (3) ask for medical/psychiatric proof that they are who they say they are. Generally these tactics are pulled out of a global bag of tricks when the ideas put forth by an ASD individual are in disagreement with the other person’s ideas or when the experiences described don’t match a preconceived notion of what kinds of people are supposed to have said ideas or experiences.

The vast majority of autistic people I come in contact with, including my son and including myself, have a very keen awareness of what is just and fair. Part of that sensibility is driven by logic, but the other part is driven by love. Not the sentimental kind of love that can be found on a Valentine’s Day card, but an action-driven love that seeks to defend not only one’s own rights, but those of others. The true meaning of autistic advocacy, activism, and liberation is to advocate for, be active for the cause of, and liberate all autistic individuals, no matter how “low-functioning” and “retarded” they are considered. The few aspies I have encountered who hate those “low-level autistics” and other miscellaneous “retards” and “rejects” are the exception, but their hatred must be pointed out also, not brushed under the rug. So long as that kind of hatred and self-hatred exists among autistic people, autistics will suffer as a whole. 

Ethics is the social skill that I value the most, but one that I see lacking more often among NT groups who come in contact with autistic groups than the other way around. When I think of my neighbor’s son Robert, I know that even though he can’t talk to me, he knows the meaning of “wrong” and “being wronged.” I’m sure that Blake knows it, too. I believe that a lot of the “violence” attributed to autistic people is actually a response to the feeling of having been wronged, or at least the feeling of things in general not being quite right.

Autism is not a disease. It is a different wiring of the brain, a different way of thinking and perceiving the environment. It comprises a set of social skills that look very different from another set of social skills favored by the NT majority. Many autistic social skills, such as the kinds that keep us connected with each other and constantly bouncing ideas off of each other for the common good of all of us, are not valued. There are other social skills, such as gossiping and being materialistic/fashionable/cool, that many NTs value but that many autistics find neither ethical nor essential to being human. So, if someone were to come up to me and ask me, “Wouldn’t you like for your son to improve his social skills?” I would have to respectfully say, “It all depends on what you mean.”