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.”

“Temple Grandin says animals think like autistic humans. She should know.”

Even though the blurb “The Face of Autism” was an editorial insertion and not Temple Grandin’s own declaration about herself, I still felt like she must have have given some tacit approval or at least some kind of signal to the author that it was okay to use this kind of language. I could be wrong, though. My own father was misquoted at least once in his 1989 interview with People Magazine, so I really should know better than to blame the celebrity. But still. 

I remember feeling very cynical after reading this article, but not because I don’t respect Temple Grandin (although I do believe that if you truly love and understand a creature as much as you say you do, you shouldn’t make it your occupation to find new and better ways to kill it). I didn’t like it because I felt that there is no “face of autism.” The ”face” that was interviewed is a very unique autistic individual who does not speak for me or for my kids and whose total package doesn’t resemble any of us. Of course there are some things about her that could be universal to autistic people. There are some things about autistic people that are universal to all people. So in my view, it doesn’t make sense to elevate any one person and call them the “face” of any group of people.

I guess it is precisely for all these reasons that I found the video so delightful. It was almost like this kid was thumbing his nose–probably without even knowing it!–at what everyone probably expected to find when they clicked on a video titled in this way. Maybe they were looking for an image of something tragic, or weird, or heroic, or angelic? Instead, what they got was an image of something human, and normal, and loving, and happy. Instead, what they got was the message that the face of autism is…you. That’s right, you. Here is are the captions that this boy wrote:

This is Jorie

Jorie is autistic

She is just like you and me

Jorie is my little sister

But she’s the same as your little sister

Or your daughter

I love you Jorie

We all do

His idea is so simple, but apparently it is so profound that millions of people reading, writing, and talking about autism still do not get it. Autistic people are human beings who, if allowed to, have lives worth living, loves worth having, joys worth sharing, families who love them, desires, and aspirations just like everybody else. If allowed to be, they could be just like everyone else instead of objects of voyeuristic curiosity, scrutiny, pity, fear, and/or loathing.

I admit to the world that I bawled my eyes out the first time I watched this video, and the next six or seven times I watched it I cried some more, but not quite as much. Even later on that day, as I was going about my business of folding laundry or whatever I was doing, every time I played back the Coldplay lyrics in my head, I would start tearing up again. I know I will never be able to hear that song in the future without thinking about Jorie and her brother.

As I usually do when I get very enthusiastic about something, the next thing I did was to post the video to my group and to a few blogs. I wanted everyone to see this video, because we were all pretty much still reeling from the hurtful video called Autism Every Day. I felt it was “time for something completely different,” and so it was. Finding this video seemed really nice after just having written The Opposite of Love. It was time for the opposite of fear, and I was ready for it. So were some people on my group. Trudy was calling for “great big propaganda campaign” to promote visual images of autism along the same lines as this video, and Anne was getting her groove on:

After seeing these videos and reading [The Opposite of Love], I’m committed to getting into a more positive groove instead of reacting to other people’s views all the time. You can’t really argue people out of fear or hatred.

Some members of the online autism community were starting to send posts to Jorie’s brother (who goes by the name Chaseboxers), thanking him for making such a great video and telling him how lucky Jorie is to have such a loving brother. I felt like maybe there was a new vibe starting to emerge, and I really, really liked it. I found two more videos, one of Jared and one of Kevin Leitch’s daughter, and I created a collection of autism-positive videos, for what purpose yet I have no idea. But I was feeling good, and that feeling was not allowed to last. That’s because I got sucked back into the negativity of a troll who posted on the You Tube site as follows:

Paul wrote:

That was beautiful. I hope she is getting early intervention therapy so that she may have a better quality of life. I am a therapist for children with autism (among other things) and I can’t stress enough one thing: consistency. Watch “The Miracle Worker” or “The Elephant Man.” You’ll see what I mean.

Autiemom replied:

Hi Paul,

Your comment was tasteless. Can’t a brother tell everyone he loves his autistic sister without some therapist coming along and talking about the urgent need for therapy? Come on!!

Paul fired back:

“Tasteless?” How? I have been working with special needs children since 1991 and have seen way too many cases of no early intervention at home and it is sad. And although my focus wasn’t intended to sound “urgent,” early intervention IS an urgent matter..but that’s only if you CARE. I never devalued her brothers statement of love (nor did I assume she wasn’t getting any) I said “I HOPE she is…”

And again he wrote in a separate post:

I also want to point out that I’ve seen many parents feel bad for their child and let consistency slip every now and then…bad idea. There’s a reason I’m a lead therapist who won instructional aide of the year TWO YEARS IN A ROW. I don’t treat these children any differently than I would a neuro-typical. In fact, I demand more…and it works. Just like her brother says: she’s no different.

Autiemom concluded:

Paul, If you cannot see how your original post was inappropriate *in this venue* than it is you who needs social skills training. Your subsequent two posts would take several pages to deconstruct. Again, this is not the appropriate venue to do that.

I would like to say that this particular exchange sparked my idea for this essay, but it did not. I have been thinking for several weeks now about something that has made me so sad that I have not even been able to put words to it. The only reason I’m grateful to Paul is that his posts served to squeeze out the puss that has been building up under the surface of my thoughts about therapists and what they can do to families. In much the same way that Paul intruded upon the thoughts and feelings that were being expressed on the comments page, the organic flow of ideas that sprung from a very unselfconscious act of love of one brother toward one sister, I have found that therapeutic ideas and actions regularly intrude upon my everyday life as I am interacting with my children, and what that does is kill the spontaneity and the joy or at least lessen it.

I finally was able to put words to this thought as I was sitting on the floor with Ben the other day. He was lying on his back looking up at me, knees bent into his chest and feet on my chest. We were talking and playing, and I was kind of rocking forward and letting his knees push firmly on his chest. This made him smile, just like it used to make David smile.

Deep pressure.

We were rolling around on the floor and playing some more

Floor time

and more words started popping

Reciprocity

into my mind

Referencing

and it made it hard for me to truly enjoy this game we were playing on the floor because I felt like I was betraying him. He was trusting me and was fully in the moment with me, whereas I was turning our private nonsense play into a teachable moment. Inwardly I felt something had gone terribly wrong, somewhere down the line. Had I just been paying too much attention to everything Ben’s therapists were saying to me? Had I been too good of a student?

Several months ago, Ben and I made up a game called “Dee dee dee dee.” The way you play this game is you tap on my butt and get me to turn around. Then you hold out your hands, and I grab your hands and run around in circles with you, saying “Dee, dee, dee, dee” in a squeaky voice. Then I pull you down with me onto the floor. We laugh and roll around, and then we get up and do it again, only going in the other direction. This was our special game, and nobody else knew about it because they didn’t need to. One day after an OT session the therapist told me how great Ben was at “referencing” and how she wanted to graduate him to some more “relationship building exercises” in accordance with the theories of Dr. Guttstien. That’s when I told her about our little game, and that’s when she loudly congratulated me for really “getting it” and doing things innately with him that are helping him, therapeutically, to build his relationship skills. The game was never the same after that, for obvious reasons.

To read this, paired with Paul’s posts to me on the issue, it might seem that I am against any kind of autism therapy and think all therapists are evil. In fact both of my autistic sons have received OT and ST, and my older autistic son David also received PT for a time. Paul completely missed my actual objection—you don’t tell a kid that you hope his baby sister is getting early intervention as a commentary to a video whose sole purpose was to convey love for her–and made it into something that it was not: criticism of him personally. He went on to say that providing (his definition of) early intervention means you “care” and not providing (or not providing evidence that you are providing) early intervention means you don’t care. The consequences of such uncaring, inconsistent parenting are sad, he says. Did he forget that he was not writing his original comment to a parent, but to a brother? Why should he suck a kid into this political game? Was he trying to get the brother to demand–to use a word that Paul used to my utter disgust–from his parents what exactly they are doing to help Jorie?

Here is what is really sad. I’m 38 years old, and about one month ago I had a miscarriage. I don’t know if I can get pregnant again, and I don’t even know if I will bother trying to. Sad as that event was, that’s not even the sad part I’m talking about here. The sad part is that I don’t have too many more years of being able to spin around the room squeaking “Dee dee dee dee” with Ben before he will start saying to me, like David does sometimes, “Just go away and leave me alone.” How much longer will I really be able to roll around on the floor and blow fart noises into Ben’s belly before he gets tired of it and just wants to go play video games? Not much longer. It really is true that kids grow up too fast. My 14-year-old son is going into high school in the fall. He just told me that during weight training at the high school gym this afternoon, he was debriefed by some sophomores on all the sex and drugs that he is going to be exposed to very soon. David, my autistic 12 year old, spends his time perfecting his bowling technique, discovering his nether regions in private, and beating his favorite video game over and over again. I can still kiss him and tuck him in, but I’ve noticed this summer that he’s suddenly almost as tall as I am, and he started asking me about marriage again, and why he can’t tongue kiss me and marry me. I told him he will just have to wait for the right girl.

The only baby I have left now is Ben, and with all the OT and ST he’s getting these days, I’m finding it harder to just be totally spontaneous with him in these precious few years we have together before he starts growing hair in different places and talking about girls. It hurts me when these “therapy thoughts” intrude upon our time together. But I can’t blame the therapists. I can only blame myself for taking them too seriously. Their ideas seem to move in and out of my house like ghosts, whispering suggestions to me of things I could say to my kids that might be more “relationship building.” All this does is drive a wedge between us, I’m afraid, and make our time together less sincere. Someone told me that when he was a child, he used to feel this kind of falseness in his parents. I’m sure my kids can, too.

Sadly, Paul has ruined The Face of Autism video for me. Now, when I look at it and read the comments, I don’t only see Jorie and I don’t only see that it is about her and her brother, about you and me, about humanity in general. Paul’s “face” intrudes upon those ideas that had originally seemed so fresh and innocent, and I keep wondering why he had to make it all about him, and how much he “cares,” and how much people like me don’t really care. Only I do care. A lot. Enough to try to reclaim these last few years with my little autistic son, before he gets too old to play, and enough to bust the ghosts that want to rob them from me.

Andrea is also the one who theorized that perseverations never die: they just lie dormant. Under the right circumstances (time, money, something that trips that switch again), the potential is always there for the perseveration to be resurrected and enjoyed once again. I can’t prove the theory to be correct, but I have experienced this phenomenon enough times to believe that it is true, at least for me–and Andrea. And if it is true for activities, it must also be true for words, because this morning the word counterintuitive flooded my thoughts again as I was listening to a very familiar song. What happened this morning was a phenomenon that I’ve experienced, for example, when reading a very familiar Bible passage. I will read some verse that I must have read hundreds of times before, when suddenly I will “see” something in it that is completely different, completely interesting and new, as though I had never read that verse before.

I was driving out of the Toyota dealership with my autistic son Ben in the back seat of a rental car. My car was in the shop getting an oil change, and I was not about to wait around for it with Ben in tow. So as I was pulling out of the lot I started flipping through the radio stations and noticed that they had been saved to button numbers by someone else, and I didn’t like any of the stations (all hip-hop and rap, which I can only tolerate about 1% of the time, and a gospel station that was getting bad reception).  So I decided to manually find the oldies station (you know, songs from the sixties and seventies…um, yeah), and a song I really like came on: Let’s Get Together by The Youngbloods. I was feeling upbeat and groovy, and so I started singing along with the song. Ben was in a bad mood, however, and he kept making bad-mood noises that were ramping up and competing with the song. I found myself in the awkward situation of snapping at Ben for making so much noise during my love-in of one.

C’mon people now,

“Eeeahh, ahh, ahh…”

“Ben? What’s wrong?”

Smile on your brother

“Ee-yeeeaaah, aah, eeh, eh!!”

Ev’rybody get together

“Ben! What do you want?”

Try and love one another right now

“Weeeh-aaaaah, ooh, ooh, eee-yeah!!!”

“Ben! Why are you making so much noise? Stop it, already!”

So there I was driving along, feeling guilty and not all that groovy anymore, and thinking about how ironic that whole exchange was, when this part came on toward the end:

If you hear the song I sing,
You must understand
You hold the key to love and fear
All in your trembling hand
Just one key unlocks them both
It’s there at your command

At first I was thinking, “I like that verse. I think I’m going to put that in as a signature in my Yahoo account.” But nanoseconds later, I started thinking: “Whoa. Wait a minute. Did they just say ‘love and fear’? Love and fear. That sounds familiar.” Then I started deconstructing the verse:

There is a single key. It’s in my hand. That key unlocks both love and fear. One key opens up two different doors. Or maybe it’s the same door. Maybe it’s the door to my heart. Why did they not say love and hate? Isn’t hate the opposite of love? Why love and fear? Where have I heard “love and fear” before in the same sentence?

That was when I remembered this verse from–you guessed it–the Bible:

“There is no fear in love; but perfect love casteth out fear: because fear hath torment. He that feareth is not made perfect in love.” 1John 4:18

And that’s when the word counterintuitive started playing in the background of my mind over and over again. I thought, “If anyone was asked ‘What is the opposite of love?’ the answer would always be hate. It is counterintuitive to suggest that the opposite of love is fear.”

Counterintuitive. I agreed with myself that it was, but I didn’t know exactly why yet. I knew that it had something to do with the word epiphenomenon that I started perseverating on the night before, after reading about it on Autism Demonized. I began thinking about illusions and distractions from true phenomena, whereby maybe most people have a tendency to mistake epiphenomena for phenomena, and how that can relate to other things in the world too, but ultimately I was forced to push all these thoughts aside because I found it frustrating that I could not write about it while driving around doing all sorts of mundane errands. Ben needed his allergy shots, my vacuum needed bags, and my other autistic son David needed a bottle of Coke. And I do mean “needed.” I also had to take David to see the psychologist in the afternoon for an evaluation necessary to apply for additional services outside of the school district, and thoughts of having to go through the interview made it hard to think about much of anything else. After that interview was over, I dropped David home so he could resume playing Sonic the Hedgehog on Sega Dreamcast, which had been on pause the whole time we were out. I paid the babysitter and took Ben with me to go get my car back from the dealership. That was when I started thinking again, and thinking so hard actually that I actually got lost, which doesn’t happen very often. I tried to backtrack and find the other road but I ended up on some unfamiliar side streets going in the wrong direction. I hailed a woman on the street, telling her I was looking for Easton Road, and she ended up being very, very Aspie-ish which gave me some comfort for some reason. Her directions got me as far as Glenside Avenue, and I guess the Force led me back in the right direction after that.

If it is true that fear is the true opposite of love, why would “hate” be the almost universal response to the question, “What is the opposite of love?” Could it be that people are mistaking the epiphenomenon for the true phenomenon?

On the Autism Demonized blog, Ballastexistenz posted a quotation, attributed to Dr. Michael Goldburg, from the film Living the Autism Maze:

How can we have this rare misfortune become an epiphenomena [sic] threatening to overwhelm our school and social systems, while destroying families across this country and around the world?

Ballastexistenz looked up the word epiphenomenon and rightly commented that this word does not make sense in this context. Definitions of epiphenomenon:

A secondary phenomenon that results from and accompanies another

A secondary phenomenon that is a by-product of another phenomenon

I believe that the author of the above quotation was trying to amplify the word “phenomenon” by erroneously adding “epi,” instead of “pan” (e.g., the way epidemic is amplified to pandemic). Since ”pan-phenomenon” is not a word, the writer fell back to the real word “epiphenomenon,” which is probably not what he meant. (That is, unless he was implying that the phenomenon is the mercury and the epiphenomenon is the autism; but that could be the topic of another, well-worn discussion.)

Could it be then, I wondered, that hatred is “merely” a secondary phenomenon that is a by-product of fear? Could it be that the things people hate about autism, and what seems to be a hatred of autism and autistics, is really at its root a fear of autism and autistics, and a fear of encroachment upon oneself and one’s identity by the misunderstood entity of autism? Could it be that if the uncertainty surrounding something about autism were removed, a lot of the fear, control, and hatred of it would be removed also? I think back to all the things I have ever felt resentment (a lesser form of hatred maybe) about autism, and these are a few things that come to mind: poop all over the place, being pinched and bitten, not being able to go many places or do many thing that other people take for granted, not having any normal experiences with my children’s schools and teachers, stress on marriage. But as these things start resolving themselves one by one, I now think that if only I knew at the time that “poop all over the place” would end on such-and-such a date, I would not have been so resentful at the time. What I needed was an end-date to look forward to, and then I would not have been so afraid that it would never, ever end. The helplessness that comes from feeling like a certain thing will never end breeds fear and resentment; ultimately, if left unchecked, it can breed anger, hatred, and murder. That is why Jesus said if you hate your brother in your heart (i.e., angry with him without cause, feel he is a fool) you are in danger of judgment because you have already murdered him in your heart. Hatred and dehumanization are only one step away from murder.

On this same blog, Gryphyn was criticized for demonizing autistics in a thread called Are You Neurotypical. The criticism was cross-posted back to the thread, and instead of engaging in mature dialogue Gryphyn responded in this way:

[AB] is a fucking moron. I’m not demonizing autism, I’m demonizing people who think having autism is ‘cool’. Get a clue, fucking public school rejects.

My response to this extreme nastiness was as follows:

When confronted with that “bad idea or notion,” those who perpetrate it can be seen to convulse and emit a strange string of denials and ad hominem attacks. This was posted on that site after Ettina posted:

“[AB] is a fucking moron. I’m not demonizing autism, I’m demonizing people who think having autism is ‘cool’. Get a clue, fucking public school rejects.”

He says he is not “demonizing autism.” He is merely calling autistics morons and rejects. There may not be any spiritual component involved here, but the hatred is transparent.

I almost forgot to mention that by cursing and calling ALL (by the fact that he used the plural at the end) autistics morons and rejects, this writer seeks to elevate himself to the status of “cool,” which is the kind of thing he seems to be denouncing.

I said, “the hatred is transparent,” naming it for what it “seemed” to be on the surface. In the last paragraph I started to unearth what was really going on, but I stopped just short of a conclusion. I see now that what drives people like Gryphyn to post things like this is fear. He revealed his own fear, whether he wanted to or not, by talking about the status of “cool,” which is clearly what he desperately wants to be or else he would not be concerned about other people’s coolness or lack thereof. He cannot maintain his own coolness without insulting an entire population. He cannot even see the self-contridictions in his writing because he is so blinded by his own self-protective, identity-protective fear of losing his cool status. I’d say this way of thinking is a slippery slope, but actually Gryphyn went from zero to sixty the moment he was questioned about his statement, so I guess for some people hatred is felt very easily and very fast.

And yet, even though I believe that the end result of fear is murder, I do not believe that murder can be explained away or excused through a compassionate look at the “trembling hand” of the mothers and fathers who held that key and instead of unlocking love unlocked fear. By unlocking instead of controlling fear, they opened up a Pandora’s box and allowed their fears–natural fears that probably everyone experiences–to spin wildly out of control. They betrayed their faithlessness in doing so. Faithlessness in God first, but also faithlessness in themselves to persevere as parents and faithlessness in their children to grow and mature at their own pace, leaving many of these distressing aspects of autism behind them.

People believe that the opposite of love is hate. Hatred kills, so hatred must be associated with action, power, and strength. Love nurtures, so love must be associated with passivity, meekness, and weakness. In reality, at least for me, the opposite is true: 

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind. 2Timothy 1:7

The reason killers kill what they fear is that they have a spirit of fear that makes them believe falsehoods. They have no faith, no patience, no perseverence, no longsuffering, no understanding, no wisdom. They allow themselves to be cornered by their own fears, and everyone knows what happens to a cornered animal: they have a fight-or-flight response. Those who fear autism have chosen to fight it because they can’t fly away from it. Some have joined the cause to Deafeat Autism Now and Cure Autism Now, others have chosen to fight with words and images, such as the members of Autism Speaks, who have portrayed autism through their own fearful lens in Autism Every Day. Members of Autism Speaks have not been content to wallow in their own fears about autism. True to the adage that misery loves company, they have sought to envelop the viewer in their own fearful world by projecting their homicidal thoughts onto them. If the viewer identifies with Autism Speaks and the “gut-wrenching” tales of suffering, the viewer will automatically identify with the inner thoughts, now publically spoken, of some of the members. By now this notorious quotation uttered by Alison Tepper Singer is widespread in the autism activist community:

“I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools.”

Others, such as Karen McCarron, have taken that last, awful step and have actually murdered their autistic children to “end her pain and her daughter’s pain.” I doubt that, if asked if she had hated her daughter Katie, Karen McCarron would answer in the affirmative. In her mind, I suppose, she was committing a mercy killing. Her fears for herself, her family, and her daughter overcame her and caused her to do the unthinkable.

If perfect love casts out fear, what about imperfect or misguided love? I think it leads to disaster. I leads parents to take all kinds of chances with their children, maybe even kill them, in the name of love. Yesterday I saw a woman with two autistic children interviewed on the first of a five-part series called Inside Autism on CNN. To paraphrase because I can’t find the transcript, she said she has tried everything to help her autistic children, and when something didn’t work, she tried something else. This upset me because it seemed almost like a game of Russian roulette. If the therapy doesn’t work, then fine; no harm done. If the therapy does work, all the better. What if the therapy not only doesn’t work but harms or kills? That is the trouble with “trying everything” out of fear mistaken for love.

The autism activist community has been trying to defeat this Goliath (represented by DAN, CAN, Generation Rescue, and Autism Speaks just to name a few) by using reason and expressing righteous indignation, but Goliath keeps growing bigger and stronger, backed by corporate sponsors, Hollywood, science and research, and some members of the government. Even though I feel like a tiny David in this battle, I wish that I could just lodge one tiny thought-seed into Goliath’s heart, not a stone into its head to kill it. If I hate it and kill it, I am no better than they are, really, and I am just betraying my own fear of it. If I could do anything at all to transform it or convert it, it would be to plant the idea that to truly love is to have true power, and that we already have the means to unlock unconditional love toward our children, if only we will use the keys we are holding in our hands for the right purpose. God gives everyone a free will to choose between life and death, good and evil, love and fear. I would much rather win the Goliaths over to this point of view–to choose love–than to keep answering their fear and hatred with righteous indignation and getting nowhere at all.