Autiemom Speaks Out

2006-02-17T20:17:00.000-05:00

Sara the Famous

At long last, my second book Sara the Famous is finished and ready for purchase here. The publisher, Xlibris, placed this book under the category "Juvenile Nonfiction/general," but this might have been for lack of a clear sense of where to put it. That's good. I intentionally made it so that the genre would be elusive. This book is meant to appeal to a wide readership, regardless of age, religion, or neurology. While the experiences and emotions Sara shares with us are specific to her autism and her Christian faith, the themes of injustice, self-awareness, self-advocacy, and forgiveness are universal. That being said, this book is more about Christianity than about autism; Sara interprets the gospel story through her own experiences as an autistic girl. One could say this book is an autistic retelling of the gospel.

A bit of background:

About a year and a half ago, my friend's autistic daughter Sara asked me if I could write a book about her life. At around the same time, Sara's mother told me that Sara had been repeatedly saying that she wanted to be famous--that she was definitely going to be famous--but nobody was really sure what she meant by that or if she thought of "famous" the way most other people did.

It was around this time that she began discouraging people from buying her birthday and Christmas presents; she spent the days after Halloween giving out all of her own candy to sick children at children's hospitals. I was inspired to write this story after seeing Sara's Christian faith in action, and after listening to Sara's mother tell of Sara's experiences in the mainstream school setting as a Christian autistic girl. These experiences were often filled with loneliness, frustration, rejection and discrimination, but they resonated with her faith and helped to strengthen it so that she could aspire to give to others what she herself so often had not received.

Author Bio:

Lisa Jean Collins received her Bachelor of Arts degree in British and American Literature from the University of Pennsylvania in 1989. During her college years she took elective art classes at various schools in the Philadelphia area, including The Pennsylvania Academy of Fine Arts and Moore College of Art and Design. After graduating, she worked as a production editor and later worked at home as a freelance editor in order to raise her first child. Drawing from her experience as an English major, her work as an editor, her love and knowledge of the Bible, and her lifelong passion for illustration, she created her first Christian children's book, We Thank You, God, For All These Things, which was published in August 2004. Her second book, Sara the Famous, is based on a true story as told in the voice of her young friend Sara, a Christian autistic girl with a deep faith in Jesus. It chronicles Sara's experience with isolation and discrimination, and it shows the flip side of what such experiences can mean when one's highest aspiration is to be a different kind of famous: A Jesus kind of famous. As a mother of two sons on the autistic spectrum, Lisa Jean Collins has been very outspoken in her online writings about the need for the general population to respect the rights of autistic people. As a Christian, she wants to show that people with disabilities should never be treated as broken or less than human. Every single person is whole and has a purpose on this earth, and every single person was made in the image of God. Lisa Jean Collins lives in Fort Washington, Pennsylvania, with her husband and three sons.

2005-12-31T15:26:00.000-05:00

How's This for a Radical Idea?

"You're such a lawyer," I said to my young son, my firstborn, when he was about five. He had been negotiating a deal with us about something: some punishment, some decision, something we were discussing that wasn't going his way. He has always had this way of seeing something just a little differently, or arguing something in such a way that everyone else ended up feeling slightly foolish and he ended up getting his way. Some would say he was rather spoiled. Maybe.

I wasn't even that mad when I said it, but something about the way I said "lawyer" made my son think I was insulting him, as if I were saying, "You're such an idiot," or "You're such a brat." He got very red in the face and started screaming, "I am not a lawyer! I am not. No, I'm not a lawyer. Don't call me a lawyer!!!" My husband and I just looked at each other and started laughing, and this made my son stop screaming long enough to ask, "What's a lawyer?"

Then we really busted out laughing.

By now my readers might be thinking, there is no way this firstborn son (if he even exists at all) could have said so many memorable things over the years, let alone things worthy of writing about or things relating to bigger and more important issues than what they were originally about. Frankly, it makes me wonder, too, but it's all true. Just this morning, I asked my son, who is now 14 years old, to verify that he was the author of yet another statement; it was one I had mentally attributed to him, but I wasn't sure if he was the one who had said it.

He smiled and told me he did remember saying it.

This was years ago, back when I was adrift--again--looking for that ideal church that doesn't exist anywhere, but thinking I would start by trying to find a church that most closely resembled the way the first century church was described in the Bible. I thought, maybe the problem with churches today is that they don't model themselves after the biblical ideal, but rather have splintered off into hundreds of sects and denominations, all with different sets of doctrines and forms of church government, all believing they have it all figured out, many believing they are the only door to salvation, and most of the members of each church feeling rather proud to be a [insert church denomination]. I thought, I need to find a church that isn't an "-ist," "-an," "-al," or "-ic," but is just a plain old church, so I announced one day in my son's hearing that what we really needed to find was a nondenominational church.

He paused for a moment and said, "Yeah, but isn't 'nondenominational' a denomination?"

I fell through the proverbial floor. These are the kinds of kids that teachers tend to either love or hate. My son has had both kinds of teachers. On the far extreme was a kindergarten teacher who literally couldn't stand him, traumatized him, refused to challenge him academically because of his disruptive behavior, and refused to believe me that he was being disruptive because he wasn't being challenged. I pulled him out of kindergarten in October of that year and put him in a private school in a new kindergarten class. This new kindergarten teacher also had some difficulty handling his behavior, and the following year his first grade teacher told me at a parent-teacher conference that my son was a teen-ager trapped in the body of a six year old. She said she never had a kid like him in her class before. In second grade, I put my son back into the public school system. He floundered around for the next few years until his last year, when he had Mr. Parsons, a bald scary teacher that nobody wanted because they were afraid of him. This was his best elementary school teacher, and this is the one who told me at the end of the year that he never had a kid in his class like my kid, and this teacher was close to retirement. He said my son was like an adult trapped in the body of a ten year old.

I'm not yammering on about my neurotypical kid in order to brag about him, although a certain amount of parental bragging is completely natural, as I pointed out in my last essay. Most parents do brag about their kids on some level and to somebody, somewhere. What was at issue in my last piece was not parental bragging per se, but the impetus behind the bragging and pedestal-raising (both self-imposed and imposed by others) when it comes to autistic people. Neurotypical people do not have to prove that they are worth something and/or deserve to live. If they happen to be particularly good at something, that's great and they will be applauded, especially by their parents. If they are Average Joes, however, they are still considered fully human and fully worthy of just "being." Nobody is sitting around in some laboratory pondering the cost-benefit analysis of allowing future NTs to be born. Nobody is wondering if aborting NTs might be a mistake because maybe in the process of global NT annihilation, there might be a genius NT aborted by mistake. When people are opposed to abortion in general, it is because they believe life begins at conception, and they believe it is murder to end a human life. When people are opposed to future abortion of fetuses identified as autistic, it could be for any number of reasons: (1) all abortion is immoral, (2) autistics as a minority group should be allowed to live (even if they don't think abortion in general is immoral), or (3) you might just kill the next Bill Gates by accident, which would be a crying shame for the world.

The reason I keep recording my son's sayings is that, for whatever reason, they keep seeming so relevant to my thoughts these days on all kinds of issues. And to suppress these things he's said for the sake of some self-imposed modesty would just be silly. When my ideas about an issue start percolating into an essay, it tends to be someone's random comment that will push my thoughts over the edge to the point where I am actually ready to sit down and put my thoughts to keyboard. A lot of these comments have literally come from the mouth of a babe, my babe.

So this morning, after spending three days thinking about the Autistic Bitch From Hell website (one I'd categorize under the heading "radical autistic activism," because that is what it is intended to be), I was standing in my kitchen gazing at the back of my son's head when suddenly "The Lawyer" and "The Nondenominational Denomination" archives bobbed up to the surface of my thoughts. My ideas on labels and antilabelism started to come together, ideas that had been flying at me from all angles while I read through each of her articles (her real name is a mystery, but I'm going to assume the author is female, as in "female dog"). After reading through the entire site, I became mentally itchy and I spent the past few days trying to put my finger on why I had a problem with some of what she wrote. What gradually began to emerge was a sense that, the more some people try to avoid political correctness the more politically correct they can become, and the more they can become entangled in their own contradictions while seeming to have discovered something that nobody else has.

I just want to say before I go on that overall I did like this site. I thought it was kind of funny, kind of edgy, and kind of different. I thought the author made a valiant attempt to cut through a lot of BS currently going on in the so-called autism community, and I thought it was worth adding to my growing library of autistic activism. Now I will tell you what I didn't like about some parts of the articles, but not for sole purpose of ripping them apart. That would be pointless. I'm doing this because one of the things I truly dislike is the feeling that I am being told how I should think and what words I should say, even if the person telling me is someone I basically like and basically agree with. I don't think anyone should combat manipulation with manipulation, even for the purpose of achieving an end result that everyone agrees is a good one.

I Am Not Abnormal! They Are Not Normal!

In NT, or Not NT, the author uses what I consider to be a clever literary device. In the context of, "I'm angry as hell, and I'm going to invite you to kiss my ass--or at least introduce your ass to my steel-toed boot--if you disagree with me," she writes:

I [emphasis mine] don't use "neurotypical" or "NT" when discussing the non-autistic majority population. That is by design. Yes, it's a convenient shorthand term for non-autistic folks, and it's not as cringe-inducing as "normal," but it suffers from a number of very unfortunate linguistic woes.

Since the author introduced the term "linguistic woes," I'm going to take her own term and run with it. Here is the mechanism I see going on here:

heart

Here's a news flash: autistic people are not normal. In the same way my son felt highly insulted at the word "lawyer" because it sounded offensive even though he had no idea what it meant, many people feel insulted by the notion that there are normal people and abnormal people, or that there is normal development and abnormal development. That is their problem. For those who don't already know, this is the primary definition of normal:

Conforming with, adhering to, or constituting a norm, standard, pattern, level, or type; typical: normal room temperature; one's normal weight; normal diplomatic relations.

This is the primary definition of abnormal:

Not typical, usual, or regular; not normal; deviant.

I am fully aware that some people use the words "normal" and "abnormal" only to signify "good" and "bad," but that has nothing to do with reality, and anyone who accepts that these are the only meanings has nobody to blame but themselves, not the people who misuse the words.

Anything that does not usually happen at all or does not happen in the way that it happens in most other beings or things is actually abnormal, but that does not mean it is undesirable. It means it is rare. Autistic people are rare, and they are wonderful just like all other people and yet different from other people. Objects (like pearls) are considered wonderful because they are rare. Autistics are not wonderful because they are rare; they are wonderful because they are human beings. They are rare because they do not develop in the normal way, the way neurotypical people do, which leads to the next term that the author wants thrown out.

Out with the old PC, in with the new

The author wants us to hate the word "neurotypical" for this reason:

The chief problem with the word "neurotypical" is that it abjectly concedes what ought to be a huge point of contention—that there is such a thing as a typical human brain. Let's do a thought-exercise here: Imagine what it would be like if other minorities used such terminology to describe the majority group. Can you picture Muslims referring to Christians as religion-typical? Black activists calling whites color-typical? Feminists speaking of men as gender-typical? Hispanics describing Anglos as language-typical?

The absurdity is obvious in all of these contexts. In today's multicultural society, the concept of diversity means that there is no standard human template against which all other groups are measured. Society regularly exhorts us to celebrate our diversity and to respect others' differences. Most of us wouldn't dream of asserting that our particular group, whether racial, religious, or whatever, ought to be
described as the "typical" human.

I'm forced to point out the obvious absurdity here, but it is not with the word "neurotypical." The author uses two fallacious arguments to prove that the word "neurotypical" is inaccurate:

1) There is no such thing as a typical human brain: At issue is not whether there is a "typical human brain," because by "brain" (following this author's line of reasoning and examples given) one can mean gross anatomical architecture, personality, sexual orientation, religious persuasion, learning style, food preferences, and any number of things. I believe the word "neurotypical" refers specifically to physical, social-emotional, and language development and behavior, and I thought it was understood that those called "neurotypical" are those who exhibit the pattern of development of the vast majority of all human beings. They gaze, vocalize, walk, talk, pretend, and socialize when and in more or less the same manner as most other people do. That is all it means.

2) Multicultural diversity and neurodiversity are analogous: Abnormal development in the form of autism crosses both genders and all religions, races, and ethnicities. It is accurate to say that autism is an typical (i.e., abnormal) form of human development. What the author is positing is that we should not call normally developing people "typical," just as religious and racial minorities should not call their respective majorities typical. That is utterly ridiculous, even though I believe I understand the motive behind the author's impassioned plea for acceptance and tolerance. Religion (e.g., Muslims, Christians) and political idealogy (e.g., feminism) do not follow a genetically encoded path of neurological development from birth to adulthood. They consist of ideas and choices, and they can change or be abandoned at any time. Autism cannot. Race and ethnicity happen to you at birth but remain static, not subject to development; citizenship is another story. The common thread between autism and these other examples is that all people need to be treated with respect and tolerance, but the reason why autistics need to be treated with respect and tolerance is that they are human beings, not because it is offensive to suggest that their development is abnormal (i.e., the way it might be considered offensive for an American Christian to suggest that this is a Christian nation founded on Christian principals, even if somehow this could be proven to be true). The concept of civil rights for all is a good one, but we need to make the distinction between groups formed by choice, place of birth, race, and religious affiliation versus groups that came about through variations in biology. What we need to change is the commonly held notion of what abnormal means, rather than denying the fact that something is abnormal by playing around with words and definitions. In other words, in my opinion, true civil rights for autistics will come about when abnormal is okay.

Imagine no neurological labels

The author sets up this strange analogy:

autistic:Muslim as neurotypical:Christian

The author then goes on to say that there is no neurotypical person, and that the meaning of the neurodiversity movement has somehow been perverted as follows:

Let's take a look at what the word "neurodiversity" really means. (This definition comes from Word Spy.)

"The neurodiversity movement is based on the belief that there is no such thing as normal when it comes to the human mental landscape. The neurotypical person simply does not exist. Together we display a wide variety of neurological behaviors and abilities..."

Now go back and read that quote again.

Okay, I have gone back and read that quote again, and here's what I found:

1) The term "human mental landscape" is meaningless because it is vulnerable to any interpretation and can be used to promote any agenda, as I already demonstrated above.

2) The term "neurological behaviors" is also meaningless because it is nonspecific.

3) The flip side of this definition is that there is no such thing as autism.

If "autistic" is to "Muslim" as "neurotypical" is to "Christian," and if the word "neurotypical" is an artificial construct (i.e., "there is no such thing"), then autism doesn't exist either. Here's where her theory begins to unravel. On her homepage, she writes:

A brief explanation of neurodiversity: It basically means that people with neurological differences are sentient human beings who should be treated with respect and should have the same civil rights as anyone else.

Hmm..."People with neurological differences."

Compared to whom, if there is no such thing as normal? If everyone is "different" then we are all the same. Yet the author believes the solution to this problem is to throw out the word "neurotypical" and replace it with "non-autistic." We can't do that if we cling to the nebulous definition of neurodiversity supplied by the author, because if there is no such thing as human normality we cannot be allowed to point out anything that is abnormal, and therefore labels can no longer be used at all.

And since "autistic" and "non-autistic" no longer really exist because they have been supplanted by "human mental landscape," we have just lost the left sides of our analogy, leaving dangling religions. I guess, then, we are left to imagine "no religion, too," all the while knowing that religions are very real, very distinct, very diverse, and just as vulnerable as autistic activism to new forms of political correctness. In his song Imagine, John Lennon admits that the things he imagines are idealistic and radical, but he suggests that these ideals are still worth striving for:

You may say I'm a dreamer,
but I'm not the only one,
I hope some day
you'll join us,
And the world will live as one.

What he does not admit is that if we could actually eliminate heaven, religion, countries, and possessions, we would not only live as one, but we would think as one. And that is a scary thought, not a radical one.

2005-12-14T00:07:00.000-05:00

Making the Case for the Boring Autistic

Many years ago my oldest son was heavily into action figures. In his room there were boxes of Teenage Mutant Ninja Turtles, Transformers, Power Rangers, X Men, and Marvel superheroes, to name just a few of the sets in his collection. He would spend hours posing them or making them shoot at each other. The best ones—the most prized—were the ones that had buttons on the back that allowed you to shoot the enemy with the least amount of effort. The buttons were spring loaded to give you a nice trajectory on your arrow, or whatever else you were trying to hurl at a villain. Not every figure of his had a button, but each had a special costume, firing action, or superpower—something that made him worthy of hours of playtime. Each Ninja Turtle could be identified on the basis of his mask color and preferred set of weapons. Spider Man could shoot out a red plastic web at the touch of a button, and Wolverine could alternately flex and retract his claws. He had a set of knock-off mini Transformers that could change from robots into dinosaurs and vice versa. They were all very cool, and they could all do something.

One day I came home from McDonald’s and brought my son some kind of figure: maybe an animal, maybe a hero. I wish I could remember what it was, but that’s not the point. The point is what he said to me when I handed it to him. He looked at it in a bored sort of way, turned it over to check it out, and then looked up at me and said, “Yeah, but what does it do?” I knew what he meant, of course, since we had spent plenty of time on the floor together playing action figures. I knew how important it was for there to be removable armor and an arsenal, and I knew how fun it was to push a button and see a javelin shoot across the room. But I pretended to be offended by that statement, putting on my Mom hat and trying to turn this into a teachable moment.

“What do you mean, what does it do? You are supposed to use your imagination and make it do things!”

Like I used to do when I was a kid ... I think.

Not surprisingly, my son didn’t buy this let’s-get-back-to-basics speech about how to play with toys, and he never did end up playing with the little figure from McDonald’s. A few short years later, he stopped playing with action figures, and they are all stored in plastic boxes up in our attic, alternatively melting and freezing with every passing season.

In the world of autism, if autism really is a world and not just millions of tiny worlds or multiple realities within the same world, there seems to be a strong drive not only from the outside but also from the inside, even among self-advocates and parent advocates, to make sure that autistics are described in terms of their special abilities, or what I’m going to term autistic superpowers. I have detected a new Seinfeldian sensibility about autism and autistic people that goes something like this:

“She’s autistic—not that there’s anything wrong with that—but she can ______!”
[sing, read from birth, play piano, mirror write, program computers, compose symphonies at age 3, paint masterpieces, recite all the state capitals in reverse alphabetical order, raise awareness of autism, talk to animals, be the “face of autism”…]

There is a certain political correctness that has creeped into the “autism conversation” these days, and to me it sounds a lot like an “ism” (e.g., multiculturalism, racism): Let’s just call it aut-ism. The problem with isms is the general tendency to downplay anything that is either negative or contradictory to the theory at hand, and to overemphasize anything that is, or seems to be, positive or “celebratory.”

I have been heavily involved in autistic advocacy over the past year or so, and in that time I have witnessed a tendency among some parents to publicly and repeatedly highlight the special talents of their autistic children. As a parent of two autistic children, I have demonstrated this same tendency, so in no way am I pointing the finger at others and not also myself. For example, I have found myself telling other parents, teachers—pretty much anyone—all the “amazing” things that one of my two autistic sons can do, such as playing piano and programming my mother’s VCR. The trouble is, these things are really not all that amazing. What am I trying to prove? I’ve seen other autistics described as “savants” because of their ability to read or compose poetry. Any autistic who can do anything they are not generally expected to be able to do based on their behavior or IQ is fair game for being called a savant, both by those who know better and by those who don’t.

Certainly you could argue that it’s just a natural instinct for all parents to brag about their kids, and that this doesn’t have anything in the world to do particularly with autism. You could be right. But if I thought parental instinct were all that was going on here, I wouldn’t be speaking out about it. I have one neurotypical child, and his friends' parents do not brag about their NT kids in quite the same manner or intensity as I have seen in many parents of autistics. My goal is not to assign blame, but to identify possible root causes of this behavior.

I believe that at least three things are going on here, and they might even be going on at the same time in the same individual despite the inherent contradictions:

1. Many of us have bought into the notion that if your child is autistic, you had better highlight (if it is obvious) or scramble around looking for (if it is not) what they are good at—what they can do—as if to make an apology to society for the fact that they are autistic. Some parents may also (or instead) have a tendency to play up and emphasize the supreme talents of their NT children. The motivation for all of this bragging seems to be the same, whether the bragging focuses on the autistic or the nonautistic children in the family: To offer up something desirable to the public eye as a peace offering for the autism.

2. Many of us have been encouraged by our peers in the autism advocacy movement to look back into history for role models and icons who were likely or even probably autistic, and we have on some level (fairly or unfairly) looked at our children against the backdrop of Mozart and Einstein, leaping at anything that our kids do that seems to continue along the path of our Autistic Forefathers.

3. Many of us are deeply concerned about our kids’ futures. By grabbing onto and emphasizing anything that they can do that we perceive could be made into a career or at least a living, we assure ourselves—and the outside world—that when we die our children will be able to live independently.

On some level, parents of autistic children are made to feel that they must make the case for their children’s worth—but by whom? Is society sending out these messages, or is this impulse to prove something merely the product of normal human insecurity and an effort to put a positive spin on a difficult reality?

The only "face of autism" that the general public sees is the face that is fed to them through the media. Coverage of autism is scarce, both in film and documentary, and of these there is little if anything that bears any resemblance to reality for most autistics. That is because autistic people are not the ones in control over the content and the message of what is being presented. Everything I have seen thus far in the media has sugarcoated autism by offering up something in return for the autism, something that makes it worth the viewer’s time to be watching anything about a “retard” in the first place. Take two movies, one pretty good (I have seen it several times) and one pretty bad (I have not seen it and don't want to): Rainman and I Am Sam. In both, the main character has something of conventional value designed to make the viewer laugh, or cry, or marvel, or wonder if autism really is such a scary monster after all.

Rainman is the tale of an autistic savant based mainly and loosely on the real-life autistic and savant Kim Peek. Sure, there really is such a thing as Savant Syndrome; and sure, not all autistics are savants; and sure, not all savants are autistic. That is hardly my point. My point is this: Imagine Hollywood making a movie called Rainman, about an institutionalized guy named Raymond Babbitt who had no special talents or skills, who rocked and talked to himself and made no eye contact. Period. Imagine the part about card counting in Vegas being edited out of the movie, but the parts about needing to buy underwear at K Mart and needing to watch Judge Wapner being retained. This wouldn’t make for very interesting viewing, would it? Raymond’s “annoying” habits and interests are endured throughout the movie because the payoff is getting to see Raymond’s other-worldly ability to count, memorize, and help his brother cheat at black jack. Don’t get me wrong: I still loved Rainman, especially the bathtub scene. I’m not knocking the movie as a movie. I’m trying to identify the underlying message that society seems to be both sending and receiving when it comes to autism and autistic people:

What can you do?

I Am Sam isn’t anywhere near the filmmaking caliber of Rainman, and Sam’s character couldn’t be more different from Raymond’s. So why even bother to mention this inferior movie? Sam is supposedly both autistic and mentally retarded, but he has superpowers too. He is portrayed as a father with a mental age of 7, who just happens to have a group of helpful friends and a lawyer willing to work pro bono to help him gain custody of his 7-year-old daughter. He is able to hold down a job at Starbucks, pay for his own apartment, and raise a child on his own. His daughter isn’t just smart; she’s precocious. The moral of the story is that love and will power conquer all…including reality, I guess. It is the stuff that comic books and fairy tales are made of.

It isn’t just Hollywood that is guilty of wrapping autism in a mantle of talent and virtue. There is such a dearth of anything remotely close to real life when it comes to autism on the screen, that the recent Nightline episode “A Place in the World” was met with acclaim even among autism self-advocates and parent advocates, including myself. We were all applauding the way the show was handled, but many of us failed to detect what for me is now the all-too-predictable set-up: Autistic subjects of documentaries also need to have a trick to perform. Otherwise, who will watch it? How will the show make money off of its advertisers?

The premise of the show, “What happens when all these children grow up?” was definitely a good one. Autistic adults who are not fully independent, and are aging out of whatever system they are in, could end up returning home to their aging and perhaps ailing parents who may not be able to handle the physical, emotional, and financial demands put upon them by the transition. The point of the story was to expose the fact that autistic children actually do grow up to be autistic adults who continue to need services: they don’t just disappear. For that issue, the journalists who put together the documentary should be applauded. However, I can’t help but point out that the two autistic adults showcased in the documentary also just happened to have a talent or two:

Jamie Hopp is described as “profoundly autistic”…but she can sing, and in front of an audience.

Paul DiSavino is videotaped perseverating about a scene from Sesame Street, and his mother laments that the alternative to a group home for Paul would be “unbearable”…but he works and plays piano.

Take-home message: Autistics are good for something. They are not throwaways. They have something to give back to society. We as a society need to plan for their future.

Okay, I think we can all agree with that. Here’s the problem: Why don’t they ever show autistic people who don’t have any measurable or recognizable talent, employable skill, or something else that could at least fascinate or intrigue the viewer? If an autistic is presented along with a heavy dose of pathos—

"He [Paul DiSavino] will not survive it … it would be regressing back to the institutions, back to not caring, just doing, just warehousing them … not recognizing what's important, and just abandoning them."

—that pathos tends to be balanced by something good or positive so that everyone can walk away feeling better about what they just saw, or better for having been given a different point of view about something they thought they understood.

Autistic people can be just as boring and ordinary as anybody else, but boring and ordinary don’t make for good television or film. Autism is “in” these days, but not much has changed since Rainman debuted in 1988. The autistic mystique invented by the media can be considered as inherently prejudiced and damaging to autistic people as the concept of the noble savage:

The noble savage is inherently good, but he only transmogrifies from an animal state to a human state when he becomes civilized.

The autistic is inherently gifted with talents that normal people could never manufacture within themselves, but he only becomes interesting enough to talk about when his autistic gift is considered intriguing, useful for raising awareness (read: money), or marketable.

Several months ago, a bunch of us in the autism self-advocacy movement got together and made a poster simultaneously mocking those who thought the Autistic Liberation Front was an actual organization and having a good laugh at seeing ourselves dressed in costumes of all sorts. We were the “ALF Superheroes,” and my submission for the poster was an old picture of me dressed as the Scarlet Witch, my favorite X Men character from childhood. Someone was dressed as a character from Star Trek, and someone else was a giant M&M. The poster was truly hilarious.

In all seriousness, though, most of us are not superheroes let alone superhuman. And yet there are some people within the autism self-advocacy movement who are quite serious when they suggest that autistic people could be the product of an evolutionary change in humankind, leaving mortal NTs in the dust. The “proof” behind that theory is all the nifty things that autistics can do that ordinary NT people can’t. What about the “other” autistic people? What if they never learn to read, or write, or talk, or compose, or hold down a job? What about them? If all of the autistic superheroes out there are a step higher than their NT counterparts, what about the autistic leftovers: are they a step below NTs? Have they devolved? There can be no self-advocacy without solidarity. As it is, there is little solidarity between “Asperger’s folks” and all those hard-core autistics, as if the line were that sharp between the two allegedly distinct groups. It disturbs me, even pains me, to see a new elitism cropping up even among autistics who don’t carry an Asperger’s diagnosis.

Many years ago I gave my son a toy. He chose not to play with it because it didn’t “do something,” and playing with a toy that didn’t do something seemed to him to be more trouble than it was worth. It took too much effort for him to find something valuable in that little figure—whatever it was—and he lacked the imagination to try, not because he wasn’t smart or creative, but because the toys he had grown accustomed to enjoying had weapons and moveable joints. This new generation of toys was action-packed and exciting, so he ignored what he considered to be a boring toy. What he failed to realize was that the toy was only as boring or interesting as his own imagination, and that it was not limited by the number of weapons it could hold or the fighting force of the button on its back. It could go anywhere, do anything, be anything my son might have wanted him to be, had he only taken the time to consider its possibilities. Or, it could have been nothing obvious, nothing discernible. It could have just been incorporated into the other group of toys he was playing with, and yet out of the action…an onlooker, maybe a watchman.

2005-09-14T09:49:00.000-04:00

No is Not a Word: In the Search for a Cure, Some Parents Are Beyond Denial

When my first child was two years old and just beginning to talk, he said something that I thought was so cute and funny that I remember it to this day. He was very hooked on American cheese at the time, and he used to go into the refrigerator over and over again to look for those shiny squares of individually wrapped processed cheese food. Every few months during his cheese phase, whenever I would get the idea to look behind the couch for some reason, I would find billowy piles of cheese wrappers back there. Apparently he was getting up really early, eating stacks of cheese, and hiding the evidence. One day, while I was standing right there in the kitchen, he attempted to dig into the cheese drawer one too many times. “You may not have any more cheese,” I said, and that was the beginning of probably our first of many arguments. He started protesting, either by word or by gesture (I can’t remember, since it was almost 12 years ago) when finally I just said, “No!” loudly and firmly. At this point he was really mad at me. He pouted and said to me, as loudly and defiantly as he could without getting himself into trouble, “No is not a word!” and stomped out of the kitchen. My grandmother witnessed this, and when he left we just looked at each other and cracked up. Every so often that phrase will creep into our conversations, and we will laugh and remember how cute he was as a toddler, just learning how to navigate in this unfair world of grown-ups and forbidden cheese.

Anyone who knows anything about psychology knows that denial is the most immature of the defense mechanisms. Wikipedia defines it as follows:

Denial is a psychological defense mechanism in which a person faced with a fact that is uncomfortable or painful to accept rejects it instead, insisting that it is not true despite what may be overwhelming evidence. The subject may deny the
reality of the unpleasant fact altogether (simple denial), admit the fact but deny its seriousness (minimization) or admit both the fact and seriousness but deny responsibility (transference). The concept of denial is particularly important to the study of addiction. The theory of denial was first researched seriously by Anna Freud. She classified denial as a mechanism of the immature mind, because it conflicts with the ability to learn from and cope with reality.

Among the toddler set, simple denial is probably the most common type. It usually goes something like this:

“It’s bedtime.”
“No it isn’t!”
“Yes, it is. You look tired.”
“I’m not tired!”

If when I said, “No!,” my son had stomped his foot and said, “Yes!” I probably would have thought it was a little cute that he was learning how to argue with me, but I wouldn’t have thought it was hilarious, and I certainly don’t think I would have remembered this conversation all these years later. So why do I still remember what he said, and why did it strike me as so funny? People often laugh at the unexpected, and I think I was really surprised by his precocious use of what I’d like to call metadenial:

Simple denial:

“Your mother is dead.”
“No! She is not dead!”

Metadenial:

“Your mother is dead.”
“There is no such thing as death.”

When my son said, “No is not a word!” he accomplished a power shift, at least in his own mind: (1) he took the power of “no” away from me; and (2) he was empowered to walk away from the argument rather than engaging in a battle that he could possibly lose. I should not be surprised at his level of sophistication at the age of two. After all, he is a genius.

While this way of thinking was rather funny and ingenious for a two year old trying to win an argument, it is quite the opposite when displayed by parents of autistic children. It is not just unfunny: It can be dangerous.

The National Institute of Neurological Disorders and Stroke (NINDS) states:

There is no cure for autism. Therapies and behavioral interventions are designed to remedy specific symptoms and can bring about substantial improvement. The ideal treatment plan coordinates therapies and interventions that target the core symptoms of autism: impaired social interaction, problems with verbal and nonverbal communication, and obsessive or repetitive routines and interests. Most professionals agree that the earlier the intervention, the better.

The Centers for Disease Control and Prevention (CDC) words it this way:

There is no known cure for [autistic spectrum disorders] ASDs. However, early and intensive education can help children grow and learn new skills. The goal of these efforts is to help with the difficult symptoms of an ASD in a child and to improve the child’s skills that help him or her talk, interact, play, learn, and care for his or her needs. Medicines can relieve symptoms and be helpful for some people, but structured teaching of skills (often called behavioral intervention) is currently the most effective treatment.

When you read descriptions of autism from any reputable medical source, you will notice that each one says there is no cure for autism, but that “treatment” refers to therapies targeting the symptoms of autism, not the autism itself, which cannot be eradicated in an individual. That is because autism is genetic, as stated unequivocally in this 2001 press release from the National Institutes of Health:

In collaboration with their European colleagues, scientists funded by the National Institutes of Health (NIH) have come one step closer to determining the genetic basis for autism. The researchers have identified regions of four chromosomes that appear to be linked with the disorder.

"These findings confirm the role of genetics in autism and are a major step in narrowing the search for the specific genes involved," said Duane Alexander, M.D., Director of the National Institute of Child Health and Human Development (NICHD) and co-chair of NIH's Autism Coordinating Committee.

Interestingly, the same year that the role of genetics in autism was confirmed, the Food and Drug Administration (FDA) denied the link between thimerosal and autism:

In response to section 413 of the Food and Drug Administration Modernization Act (FDAMA) of 1997, FDA conducted a review of the use of thimerosal in childhood vaccines. Our review revealed no evidence of harm caused by thimerosal used as a preservative in vaccines, except for local hypersensitivity reactions. Under the U.S. recommended childhood immunization schedule, the maximum cumulative exposure to mercury from thimerosal, at the time of this review in 1999, was within acceptable limits for the methyl mercury exposure set by FDA, the Agency for Toxic Substances and Disease Registry, and the World Health Organization.

When parents hear that there is no cure for autism, they can cope in one of two ways (referring back to the definition of denial):

Acceptance:

Admit the fact and do not deny its seriousness (i.e., do not minimize the scope of the problem, do not just sit back and take a “do nothing” approach).

Admit both the fact and seriousness, and also take responsibility to love and support the autistic child in every way, as autistic children and eventually autistic adults.

Denial:

Simple denial: “Yes, there is a cure for autism.”

Metadenial: “No is not a word.”

Metadenial manifests itself in two ways among parents desperate for a cure for autism:

I can’t hear you: I refuse to acknowledge or accept the fact that there is no cure for autism. Therefore, I will gather groups of professionals around me to search for a cure that does not exist. I will medicalize autism by putting it in the same sentence with diseases such as AIDS and Alzheimer’s. I will try to show that “cure” means curing individuals, and I will deny that the end result of autism cure could be a genetic screen to ensure that future autistics will never be born.

There is no such thing as autism: I believe that “autism” is not real, but actually a symptom of acute toxicity. I believe that if you remove the toxin, you can remove the autism. I believe that there is a vast conspiracy by “Big Pharma” and “The Government” to cover up the fact that children are being poisoned by vaccines and the environment. I will subject my children to any treatment that promises to extract their toxins and make them normal. In addition, I will subject my autistic children to unproven dietary interventions in a further attempt to reverse the effects of autism.

Cure Autism Now Foundation most resembles the first of these two responses. In its Mission and Goals statement, CAN transparently shows that its mission is to transfer power back to parents from the powers that have said “no”:

The message parents often receive is that science cannot be hurried. Cure Autism Now believes that, with enough determination, money and manpower, science can in fact be hurried so that answers are found sooner rather than later. Progress in the fights against AIDS and Alzheimer's have already demonstrated the power an organized effort among families can have. To do any less for people with autism is unacceptable.

The best example of the second response is Generation Rescue, whose goal is to empower parents with the truth about autism:

Generation Rescue believes that childhood neurological disorders such as autism, Asperger's, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning. When you know the cause, you can focus on cure. Thousands of parents are curing their children by removing the mercury from their children's bodies. We want you, the parent, to know the truth.

While slightly less brazen than Generation Rescue, The Autism Research Institute (ARI) all but states outright that autism is the result of a toxic assault on the body. According to the Autism Society of Canada, ARI not only promotes the Defeat Autism Now! (DAN!) protocol but also endorses heavy-metal detoxification (chelation) for the treatment of autism:

The DAN! Protocol

· A project of the Autism Research Institute, the DAN Protocol was developed as an alternative medical approach to the diagnosis and treatment of autism to be used by physicians as a guide for the clinical assessment of autistic patients, leading to appropriate treatment. DAN parents and physicians do not see psychotropic drugs as the best or only means of treating autistic patients.

· The DAN Protocol involves a medically supervised combination of changes to the diet and implementation of vitamin and supplement therapy as a means of producing changes in autistic behaviors. These changes include a gluten and casein free diet, elimination of junk foods and other food products that contain refined sugars, and the addition to the diet of a number of dietary supplements such as Calcium, Magnesium, Vitamin C, Vitamin B5: (Pantothenic Acid) Vitamin B6: DMG: Pycnogenol and Gaba.

· Treatments to detoxify the body are also a part of the Dan Protocol including Heavy Metal Chelation Therapy (used to remove toxins such as mercury).

· Methyl-B12 shots are also used to improve symptoms of autism.

This quotation is a slight misrepresentation of ARI’s actual position, however. ARI does not claim merely to have found the keys to improving the “symptoms of autism.” Bernard Rimland, the director of ARI, stated in his 2003 congressional testimony that autism is treatable, and what he means by that is that autistic children can fully recover from autism. What I find interesting about his testimony is his statement that “recovery” is defined as “no longer diagnosed as autistic” and “mainstreamed.” Neither of these criteria are proof positive of recovery. The diagnosis of autism is based purely on observation of behavior; many autistics have learned how to suppress their natural autistic tendencies in public places, including school. Who knows how many recovered autistic children are rocking in their rooms when nobody is looking? We can’t know on the basis of a few case studies. If autism is indeed primarily or solely genetic, no amount of behavior modification is going to change an autistic into a nonautistic at his core. Then there is the glaring conflict of interest revealed in Rimland’s own testimony: Many of these recovered autistic children, we learn, are the “sons and daughters of DAN! physicians.”

As a Christian, I have been increasingly interested in the phenomenon of Christian metadenial in the face of autism. The “world” says there is no cure for autism, but because devout Christians do not consider themselves “of this world,” the natural response for some is to ignore what the world says and look to the Bible for clues and answers. Christians—myself included—have pored over the texts trying to find anything that could shed some light on autism, only to come up empty handed. Jesus healed those who were blind, lame, deaf, possessed, leprous . . . but not a single autistic. Is autism a modern day plague? It is a curse on parents for disobedience? Is it a generational curse? “What is it?” many Christians wonder. I think Christians approach autism based on different sets of doctrines that are all relatively new in Christian thinking. The more traditional way of Christian thinking was that hardship and suffering were natural states of existence in this fallen world, that our tears would not be wiped away until we were in heaven or in our glorified bodies after the resurrection, and that we were to take up our cross (whatever that represented) and follow Christ. The new way of Christian thinking among some groups is that no amount of suffering or hardship is acceptable and must be eliminated---by being obedient to a set of principles, by naming and claiming some untapped blessing, by casting out evil spirits, or by going back to pre-Fall times and changing one’s diet:

Adherence to the Law: Some Christians believe that blessings (including health) are doled out to Christians who on some level follow the Mosaic law: “If thou wilt diligently hearken to the voice of the LORD thy God, and wilt do that which is right in his sight, and wilt give ear to his commandments, and keep all his statutes, I will put none of these diseases upon thee, which I have brought upon the Egyptians: for I [am] the LORD that healeth thee." (Exodus 15:26) Therefore, autism is seen as an unhealthy state of being, and autistic children are viewed as a personal curse for disobedience or a generation curse for the sins of one’s relatives.
Healed by Christ’s stripes: “But he [was] wounded for our transgressions, [he was] bruised for our iniquities: the chastisement of our peace [was] upon him; and with his stripes we are healed.” (Isaiah 53:5). This doctrine teaches that because the verb tense is present (“are healed”) this means all healing of illness already occurred on the cross, but Christians don’t know this, don’t name it, and don’t claim it, thereby leaving them without the blessing they are supposed to be entitled to. Another aspect of this doctrine is that healing always accompanies salvation, because Jesus always healed everywhere he went preaching the gospel, and the apostles were given the gift of healing. We are supposed to have the power to heal and be healed if we are truly Christians. This is supposed to be the sign of a true believer.
Power over unclean spirits: Sickness and lameness is associated with demonic possession in the Bible: “For unclean spirits, crying with loud voice, came out of many that were possessed [with them]: and many taken with palsies, and that were lame, were healed.” (Acts 8:7). This doctrine teaches that all diseases and disabilities of mind and body are from the devil, and that every Christian has the power to cast them out. Jesus said to the twelve, “Heal the sick, cleanse the lepers, raise the dead, cast out devils: freely ye have received, freely give.” (Matthew 10:8)
Back to the Garden: Christian parents who most closely align themselves with the creators of the DAN! protocol are those who believe we must get back to the Garden of Eden if we ever want to see our kids healed of autism. The rationale is that once sin came into the world, mankind began to eat meat. Before the Fall, this was “God’s diet”:

And God said, Behold, I have given you every herb bearing seed, which [is] upon the face of all the earth, and every tree, in the which [is] the fruit of a tree yielding seed; to you it shall be for meat. (Genesis 1:29)

For example, the makers of the Hallelujah Diet, modeled after the foods listed in the first book of Genesis, claim that the diet cures autism:

Further along in this Health Tip, I conclude the series on the CAUSE OF AUTISM! This information is absolutely MUST READ material! In this concluding article, I also share a letter from Pamala, who gives testimony of how her child was able to overcome AUTISM on The Hallelujah Diet.

On one Christian site, the author states that only Jesus can cure autism, but chelation is listed under the heading “dietary and medical intervention,” which is then followed by a list of DAN! physicians. DAN! claims to be able to achieve recovery from autism. The author does put out a disclaimer about “harmful pitfalls” but then leaves it to the reader to give prayerful consideration as to what to do.

As far as a cure, only Jesus Christ can cure any disease or disorder. All methods and means employed successfully are a gift from Him. There are a lot of things that may help improve the functionality of the victim but only God can cure the person. With God’s help, there are a number of things that are imperative if one is to help an autistic person.

First, know and believe that there is hope! For those of you who have tried many things and are frustrated, please do not give up. It is not merely a pep talk that we are giving here but a practical truth and reality: With God all things are possible.

The links give below contain some very useful information but we do not follow all that is stated on the web but prayerfully do what God tells us to. Thus many harmful pitfalls can be avoided in this still, experimental stage of treating the autism spectrum disorder. There is a tiny percentage of the medical community called DAN doctors (Defeat Autism Now) who are treating these children.

The usual tribalism between church and science, medicine and holistic medicine, established practice and quackery break down—somehow—when it comes to autism. Parents desperate for a cure often do not see the contradictions in the evidence put before them and will take risks with their children that they would not normally do in other circumstances. In a state of complete metadenial, parents have caused the deaths of their own autistic children. On the “science side” there’s this:

A 5-year-old autistic boy died Tuesday in a Butler County doctor's office while undergoing an increasingly popular though controversial medical treatment touted by some as a cure for the lifelong neurological and developmental disorder.

Abubakar Tariq Nadama died while receiving chelation therapy, an intravenous injection of a synthetic amino acid that latches onto heavy metals and is then passed in the urine.

This incident happened on August 25, 2005. On the “church side,” there’s this:

An 8-year-old autistic boy died during a prayer service at a Milwaukee church that the pastor said was meant to heal him of "spirits," and the pastor's brother is facing child abuse charges, police said Sunday.

The incident happened late Friday at Faith Temple, a six-family church in a strip mall in north Milwaukee, Pastor David Hemphill said.

Eerily, this "exorcism” occurred on August 25, 2003, exactly two years before Nadama was killed by chelation.

In the book of Job, thirty-seven chapters are devoted to the search for an answer to Job’s suffering. Job insists he has not done anything to warrant his suffering, declares God’s sovereignty, and refuses to reject God for either causing or allowing his suffering. Interspersed with Job’s words are the words of his “friends.” They sit around Job, ostensibly to comfort him, but they never have a proper understanding of the situation, never say the right thing, and never cease to cause him additional pain by their words. Their behavior stirred up God’s wrath:

And it was [so], that after the LORD had spoken these words unto Job, the LORD said to Eliphaz the Temanite, My wrath is kindled against thee, and against thy two friends: for ye have not spoken of me [the thing that is] right, as my servant Job [hath]. (Job 42:7)

When God spoke out of the whirlwind beginning in Job 38, He revealed the secrets of His creation and challenged any man to know how His universe really ticks.

Who [is] this that darkeneth counsel by words without knowledge?
Gird up now thy loins like a man; for I will demand of thee, and answer thou me.
Where wast thou when I laid the foundations of the earth? declare, if thou hast understanding.
Who hath laid the measures thereof, if thou knowest? or who hath stretched the line upon it?
Whereupon are the foundations thereof fastened? or who laid the corner stone thereof;
When the morning stars sang together, and all the sons of God shouted for joy? (Job 38:2-7)

Even Moses didn’t understand the depth and complexity of God’s creation, and he misspoke:

And Moses said unto the LORD, O my Lord, I [am] not eloquent, neither heretofore, nor since thou hast spoken unto thy servant: but I [am] slow of speech, and of a slow tongue.
And the LORD said unto him, Who hath made man's mouth? or who maketh the dumb, or deaf, or the seeing, or the blind? have not I the LORD?
Now therefore go, and I will be with thy mouth, and teach thee what thou shalt say.
And he said, O my Lord, send, I pray thee, by the hand [of him whom] thou wilt send.
And the anger of the LORD was kindled against Moses, and he said, [Is] not Aaron the Levite thy brother? I know that he can speak well. And also, behold, he cometh forth to meet thee: and when he seeth thee, he will be glad in his heart. (Exodus 4:11-14)

Denial is a two-edged sword. It can help a person to cope with uncomfortable thoughts and feelings, and to some degree we all use denial even as adults. The flip side of denial, however, is that it can be used to cope with uncomfortable realities, and that is why addicts make the most use of it:

Denial blinds addicts to the cause of their problem -- their dependence on drugs or alcohol. It allows them to pretend that their using is not destructive. Denial is so powerful that addicts are often the last to recognize their disease. Some pursue their addiction as their life and health deteriorate, continuing their denial until they die.

Autism is a genetic variation of humanity, which is God’s creation. True, there are aspects of autism that are unpleasant and difficult. However, there are aspects of the entire human condition that can be just as unpleasant and difficult, maybe even more so. Parents have had to endure the realities of deadly diseases, prostitution, molestation, drug addiction, incarceration, suicide, and murder of their children. Autism pales in comparison to these realities, at least for me.

Nobody is meant to go through this life unscathed, free of anything that is unpleasant. Parents, if you are addicted to the quest for a cure for autism, I ask you this: What reality are you running away from? Is it the reality that there is no perfect child and no perfect family? Is it the possibility that your child’s autism was inherited from you? Are either of these realities really so bad after all?

Lisa Jean Collins c 2005

2005-09-08T01:03:00.000-04:00

Form and Functioning: For Autistics, There’s No Truth in Advertising

In the world of advertising, marketing, and sales, the success of most products depends on a two key elements: form and function. When design elements such as beauty, fashion, and ergonomics are blended seamlessly with functional elements such as speed and durability, the expectation is that the product will be highly marketable and profitable, especially if the price is competitive. In TV commercials, other advertising campaigns, and articles on the art and science of advertising, the blending of form and function has been likened to a marriage. In an old article from Creative Computing Owen W. Linzmayer explained why one particular printer was better than all its predecessors:

In the world of printers, the marriage of form and function is not always a happy one. Often one trait is compromised for another; leaving you with either a beautifully inoperative machine or an unsightly beast of burden. Such is not the case with the 7500EP dot matrix printer from C. Itoh. Recently reduced in price to a competitive $289, the 7500EP is one dot matrix printer that combines sleek good looks with uncompromised features.

This kind of binary thinking works very well when it comes to selling products. The 1980s printer probably was something brand new, replacing some pretty primitive equipment. The iPod stands out as a recent example of form and function being taken into consideration in the formation of a truly innovative piece of technology. Innovation becomes excess, however, when manufacturers seek to achieve perfection—or public perception of perfection—in products that need no real improvement. In a speech from the Toyota press room on the Lexus LF-A, Dennis E. Clements stated: “The key to our success for the past 15 years will remain the key to our success in the future: Strive to build a perfect car and deliver the perfect customer experience.” His colleague Wahei Hirai later remarked, “Simplicity. In form and function it is styling that is uncluttered and void of extraneous elements, revealing beauty with extreme depth and purity.”

Marketing hype is designed to create a false dichotomy in the minds of most consumers: Other products are either attractive or operative, but our product is both. It creates discontentment with the products the consumer already possesses. Television ads seem especially designed to feed the consumer with a constant diet of “bigger, better, newer, faster, cheaper,” causing the consumer to cast a jaundiced eye upon a house full of a wide array of items that actually work perfectly well and look perfectly nice. Greed sets in, and everything each season becomes a “must have.” Finally, it draws the consumer in, keeps him there long enough to buy the product, and hopefully creates blind loyalty to the manufacturer, so that when its product breaks or becomes out of fashion—and it will—the consumer will come back and buy another one, only this time even better, more “perfect” than the last one.

In another article on this subject, Karen Booy interviews designer David T. Hawko, who lays out some tips for booth exhibitors to maximize their “punch” on the trade show floor. Why is punch so important? Because “the advertiser only has a few seconds to get your attention and draw you in.” When asked, “What are the most important elements of good booth design?” Hawko replied, “Simply form and function (form rings the bell, function makes it sell).”

Normal and Abnormal

At this juncture, you might be wondering what any of this has to do with autism. My answer is this: binary thinking, perhaps even from a marketing model, is widespread when it comes to interpreting, packaging, and sorting autistics into groups. If you are autistic, you are not normal; if you are normal, you are not autistic. Normal is good; abnormal is bad. Normal is complete; autistic is deficient. Parents with children newly diagnosed with autism are usually sucked into the hype that surrounds autism. Again, the benchmarks of such hype are (1) false dichotomy, (2) discontentment, and (3) loyalty to the author of the hype. Very few parents—probably none, unless they themselves are autistic or they have raised one or more autistics already—are nonchalant, let alone happy, when they receive the news that their son or daughter is autistic. Rather, they are “devastated,” and I use that word very purposefully; it is the word most often used to describe the feelings that come over newbie parents. That is because they perceive of autism only in a negative light. Autism is abnormal is bad. Second, they become discontent with their child and usually seek out a cure as soon as possible. When they look at other normal children, the natural reaction tends to be sadness springing from jealousy. I know because I have gone through the gamut of these emotions myself. This writing is not just a theoretical exercise. Finally, if completely drawn in by the “bell,” parents can become fiercely loyal to whatever organization is promising to cure their children. The Recovered Autistic Children video put out by Defeat Autism Now! comes to mind. Its shameless use of cameras panning the audience for a good shot of sobbing moms, and the bizarre display and interviewing of “cured” autistic children on stage, belies a loyalty bordering on religious fervor.

Let’s go back to the first example of form and function, in which the writer was extolling the virtues of this new computer printer. He presented the case that—up until now—printers were either an “unsightly beast of burden” (worked well, but were woefully lacking in form) or “beautifully inoperative” (were pleasant to look at, but were lacking in function). This was intended to “ring the bell” of the reader, making him believe that there was now a perfect product where none existed before. When it comes to printers from the 1980s, this was probably quite true. But when this kind of thinking colors the interpretation and classification of human beings, it becomes problematic and even dangerous.

In human terms, the “perfect product” can be seen as the normal, or neurotypical, individual. Normal people are presumed to have a perfect marriage of form and function-ing, and this makes them desirable to each other and profitable for society as a whole. For normals, form consists of external features such as appropriate outward appearance, behavior acceptable to other normals, independent life skills, and ability to produce intelligible language. Functioning consists of the internals, which are presumed to be measurable with a high degree of accuracy: intelligence, as measured by IQ tests; and thought processes and comprehension, as measured by writing skills and verbal responses to questions.

Perceived deficiencies in form are generally overlooked when a person has a function that society values, usually monetarily. For example, a blind and not conventionally attractive person with an incredible singing voice (e.g., Stevie Wonder, Diane Schuur) can have a vibrant musical career despite not being totally normal (the fact of their blindness seems to be inserted into every article about them). A wide swath of social forgiveness is usually allotted to socially, neurologically, or physically abnormal geniuses who are able to make significant contributions to society through science and technology (e.g., Albert Einstein, Bill Gates, Steven Hawking). This would be akin to the “function over form” rule in certain products, but not others.

A handful of autistics have been catapulted into the spotlight because of some kind of marketable talent or because they represent some kind of an interest group (e.g., Temple Grandin, Tito Mukhopadhyay, Sue Rubin). Unlike the other examples, however, it seems to be the autistic stars who end up being described as “inspirational,” because they are doing, saying, and producing things that are thought to defy their diagnosis. For most autistics, however, form doesn’t “ring the bell” and draw others in to get a closer and deeper look at the whole individual. The outward signs of their autism can be so annoying, stigmatizing, even sometimes scary to neurotypicals that function never gets addressed at all, and if it does, it is wildly misinterpreted and downgraded on the basis of form alone. This leads me to the second example of binary thinking about autism.

High-Functioning and Low-Functioning

If you are autistic, you are usually given the additional label of either high-functioning or low-functioning, defined as follows:

Children with low-functioning autism are more likely to display mental retardation, epilepsy, and extremely limited receptive/expressive language skills. They are extremely weak on "theory of mind," and overload on too much sensory stimulation quite easily. As a rule of thumb, testing will show IQ ratings of 70 or below... Children with high-functioning autism are much more efficient with expressive and receptive speech, less likely to suffer from epilepsy, and have IQ scores of 71 or above. Although too much sensory input can overload them, they have a higher tolerance and learn to desensitize themselves. These children have a stronger grasp on the theory of mind and can empathize with the feelings and reactions of others.

Enter Amanda Baggs. Amanda is an autistic self-advocate and writer who defies any autistic label. As the terms are used by most, is she high-functioning? Yes. Is she low-functioning? Yes. Is she functioning? That depends on the day and whether she has adequate support staff. I have known her through her writings for nearly a year, and I have gradually come not only to understand but to accept her views on the trouble with labeling in autism. She has written extensively on the subject, both on self-advocacy groups and on her non-site. The following excerpts are from her blog, titled Ballastexistenz. The first problem with these labels is that they come with a set of assumptions:

Are some of the assumptions about how people work ingrained so deeply that when people come across an example of a person who does not work like that, they literally are incapable of perceiving or understanding it? At least for some people?

For instance, when I say that one ability does not mean another ability is necessarily there. I mean that one ability really doesn't mean that another ability is necessarily there, no matter how related they may seem to someone.

That means, for instance, "Just because I can type, doesn't mean I can tell you that I am in pain or where that pain is located."

But other people seem to think they're dropping all their assumptions, and then they will say something like "Well it's good you can type, because you can tell people you're in pain." No, actually, I can't, and I've almost died thanks to that one not being noticed, so it's a bit of a sore spot, thanks.

When people do things like that, it makes me wonder what on earth they think the assumptions they're dropping are. I can say, "Drop your assumptions, the fact that I can't cook has nothing to do with whether I know what toast is." And be back on that damn toast-making program by the next day — "Obviously you haven't learned what toast is if you still can't make it after all this time" and so on. What assumption is being dropped here? I can't tell. Is there one? (Amanda Baggs, Assumptions, 09/04/05)

The second problem is that this kind of thinking can actually kill, in that if you demonstrate that you are “high-functioning” on any level, you can be cut off from access to desperately needed services when you are also “low-functioning.” In writing about Joel Smith and his article You Have it So Good, Amanda states:

Joel Smith doesn't often pass for NT, but he can drive, work, and sometimes speak. And he's a self-advocate, no-cure, disability rights sort of person when he writes, not a woe-is-me my-life-is-hell-I'm-the-lowest-functioning-person-on-the-planet we-need-a-cure-for-autism type. All of that works against him in the stereotypes of many. This kind of stereotyping has got to stop. It may not sound like sophisticated disability theory, but these are people's lives we're talking about. He's not the only one. The prevailing view of how abilities fit together, as well as of how abilities are connected to political views, has to change. Or people will die, and in fact I am certain that many people are already dead over exactly this kind of thing.

People need to stop spreading these stereotypes. That includes autistic people who think that by questioning our diagnostic credibility because of our political views, they will come out ahead services-wise. We're all in this survival thing together and it's not okay to sacrifice others that way. (Amanda Baggs, You Have It So Good, 09/02/05)

Let’s get back to the marketing model of autism. Read the following and forget for a moment that the writer is talking about cars. Change “product” to “autistic” and “consumer” to “society” and you will get a sense of what could be going on here:

One thing is clear, although functional performance may ultimately be a necessity and justify ownership, the aesthetics inevitably contribute to our initial perception of a product and create desire. In a commercially competitive world the ‘style’ is often the only way to differentiate two similar products and as with a piece of sculpture it has to promote a set of emotional responses from the consumer that ultimately lead to purchase. (Russell Carr, Head of Lotus Design)

If an autistic person is both low- and high-functioning, but the initial perception is that of a low-functioning individual, there will be no social desire generated within the first few seconds of meeting that person, the observer will not be drawn in, and the element that is considered high-functioning will be dismissed outright as incompatible with the externals.

People who had no knowledge of me in person were calling me a liar. They said I wasn't really autistic. They said that if I really were autistic, I did not really live the kind of life I led. They said that I did not look like I did. They even told me that I could speak, that I had a job, that I had never lived in an institution, that I did not bang my head, that I had never had any of the "therapies" I was criticizing, that I could "take care of myself." (Amanda Baggs, You Have It So Good, 09/02/05)

Conversely, an autistic person who appears to be high-functioning may be quite impaired in other ways, in silent ways, and that person’s lower functioning may be dismissed and badly needed services denied, as described in Joel Smith’s article.

I have used the terms high-functioning and low-functioning autism many times, but I should know better. My own son, who is 11 years old and autistic, has never fit neatly into any category. He has been given many diagnoses: PDD, macrocephaly, ADHD, ODD, autistic spectrum disorder, autistic disorder, and (most recently) a note that read: “rule out mental retardation.” My son reads, writes, speaks, and reads music. He plays video and computer games. He knows how to program a VCR. He also bites me and kicks me, tries to touch my breasts all the time, and has just started spitting again—on the floor, into his cups, on my car seat. He ranges from talking nonstop to not being able or willing to talk at all, or hardly at all. He loves his kid brother and tries to take care of him as much as possible, but he squeezes him and knocks him down, not being able to control his impulses and extreme sensory defensiveness. He got A’s on all his spelling tests last year in fourth grade, but he still struggles with second-grade-level math and reading.

Despite all of these contradictions, up until I started reading—and really getting—Amanda’s recent writings, I have not hesitated to describe my son as a “high-functioning autistic,” even in the course of casual conversations when using a label wasn’t even necessary. I’m thinking back now to the car quotation above: “In a commercially competitive world the ‘style’ is often the only way to differentiate two similar products.” I’m wondering how functioning labels came about in the first place, and I wonder why people continue to use labels long after they lose meaning. The fact that someone can be truly low- and high-functioning simultaneously or each at different ages, places, and situations means that both labels are true and yet neither is true either. If neither is true, then why not throw both labels away and stick with just one word: autistic? It goes back to competition. Once the “goods” are labeled, it’s time to compete for services.

In order for this to change and for autism labels to be abandoned, there needs to be a realization that labeling is a form of ownership, kind of like slaves being branded by their slave masters with the words “slave for life.” Labels are purely a reflection of how well normals (educators, employers, society) will tolerate autistics. Thus, the label owns the autistic, not the other way around. The way to end this is for autistics to take ownership of themselves by not buying into the labeling scheme. Labels do not reflect, on any level, an autistic person’s level of happiness, either. Who is to say that the highest functioning person—autistic or otherwise—is not also the happiest person? How one interprets the meaning of functioning all depends on whether one believes there is truth or hype in advertising.

Lisa Jean Collins c 2005

2005-09-03T00:47:00.000-04:00

A Journey Marked By Milestones

Last summer I received a postcard in the mail from a neighborhood church nursery school I never knew existed. The card said there were only a few openings left and that I should call soon to reserve a spot for September. I showed the card to my husband and asked him if I should enroll our youngest son. He said something like, “Sure, why not? Give them a call.” I was pleasantly surprised, because he had previously referred to church schools as “rinky dinky day schools,” without elaboration. I can venture a guess as to why he would call them that. He went to one as a young boy, and he told me once that he remembered marching around singing “Onward Christian Soldiers” and hating every minute of it. His parents were not particularly religious, and they still aren’t. His mom is Jewish. I think there were just too many contradictions for him, and it didn’t take him long to reject religion, church, God, and rinky dinky day schools. Perhaps he was beginning to soften. There was a time when he ruled out parochial school for our kids.

I, however, never ruled them out. By the time my first son was born, I had already come back to the church after many years of having fallen away from it and believing I was an atheist. The idea of sending my youngest son to a parochial school definitely appealed to me last summer. We had no church to call home anymore. It had been far too difficult to find the right place. The only church I could find that had a “special needs church” during the regular service was rather far from home and somewhat inappropriate for my middle son, who is eleven years old and autistic. He liked it and all, especially the guy who played guitar for the kids and who was probably also autistic (we talked one day), but I thought it looked more like a “multi-handicapped room” and I wasn’t sure if this was the right setting for him. Most or all of the other children were nonverbal. Some were in wheel chairs, and one child had a helmet. Had I pushed for him to be in regular “junior church,” I would have needed to provide my own aide. I had no access to wrap-around services because I let our account with the county expire. When my youngest son started showing signs of autism, the thought of dragging the kids to church with no real supports in place became more than I could take, so we all stopped going.

I wonder if I have just been making excuses for not going to church, or if the issues I have with church and autism are legitimate. I was roundly chastised recently by a church-going friend who basically accused me and others in my situation of being “self-deluded.” She said it was my responsibility to keep looking until I found the right church, and that I shouldn’t imply that all churches are hostile towards autistics just because I have had a few bad experiences. I had had some pretty awful experiences in the past with my middle son and the way he was treated at the church that baptised him. The thing that bothers me is the nagging feeling that she could be right. I have gotten tired of searching, tired of trying to explain my situation, tired of going to church with just my two kids and not the entire family. My oldest son doesn’t want to go anymore for a whole host of reasons. Perhaps church fatigue has made me lazy and fatalistic. I don’t know. But I still play out this fantasy in my mind from time to time:

I’m driving around the neighborhood. I turn a corner, and right in front of me lies a church with a gigantic white banner draped across the front of it. In huge red letters, the banner reads:
“WE WANT YOUR AUTISTIC CHILDREN!”

Feeling guilty about not going to church while still trying to raise up my sons in the “nurture and admonition of the Lord,” I jumped at the opportunity to get my son into this nursery school. I did not do my homework; maybe I saw the postcard as a “sign” that this was the right place. I have gone on impulse and instinct throughout my life, and this time was no different. It could have been utter burnout that caused me to jump into this school with both feet, or it could have been that I was pinning my hopes on this church—finally—being the one church that would overlook one of my children’s developmental delays and treat my son as a person, not a walking diagnosis.

I knew that my son was probably autistic when I first made the decision to call up the school, but I was halfway between being in denial about his autism and trying to cover it up. I called up the director and made an appointment to see the school. She seemed nice enough, and the classrooms were big and clean with plenty of toys.

What could be bad?

Things began to unravel before school even began. The director called me up shortly before the first day of school and said she needed to shift some things around based on birthdays and class numbers.

“Would it be alright to put him in the 3’s class?”

“Sure,” I said, as I was completely distracted and overloaded, trying to stir something in a pot, talk on the phone, and handle being literally pulled in different directions by my kids. I did not comprehend at the time that he was going to be the youngest child in his new class. Needless to say, this made his delays that much more painfully obvious. When I came up for an orientation meeting with the teachers one night before the first day of school, I really started to squirm. I had this sick feeling that this was all going to blow up in my face. The new teacher had a heavy Scottish accent, so heavy that I could barely understand a word she was saying. If I couldn’t understand her, how was my son going to be able to? Her assistant didn’t smile; she made me nervous. Then at the meeting, the head teacher dropped the A-bomb. She had worked with autistic children before taking this new position.

Okay, where was I going to hide? How would I slink out of there? She would have him pegged within 30 seconds of meeting him.

My heart started racing, but I kept my cool outwardly. My face is usually flat most of the time anyway, unless I am extremely angry or extremely happy. So in my natural poker face, I raised my hand and asked whether I could communicate with her by email, and she said I could. I figured if he ended up staying in the school, we would be communicating quite a bit.

The first day was a disaster. I didn’t realize it at the time, but he had been suffering from seasonal allergies. He was cranky, his nose was itchy, and he had no way of telling me how he felt. There was a tag on the back of his brand new Blues Clues shirt, and it wasn’t until we got home that I realized the tag had actually been irritating his neck, because his neck was reddish in that area. He cried and fussed most of the time that first day. He tried to pick off and eat the staples on the puppet theater, and I was becoming frantic. If I were to leave him in that classroom, surely he would end up in the emergency room. Never again did I want to see my boy in the ER with a diagnosis of “ingestion of foreign body.” The last time was a piece of metallic confetti from a birthday party.

I cannot possibly let this happen to him again. I have to do something.

I was sitting there watching him all the while knowing that this class was wrong for him. The other kids were all talking, and most if not all were potty trained. There were kids in that class who were close to four years old. He wasn’t even three yet! He wanted to interact with a little girl, but he just knocked her down on her rear end because he couldn’t tell her his name or say, “Hey, do you want to play?” She didn’t even cry or seem to care, but her mom told him, "Don't do that," right in front of my face. I hate when parents scold my kids right in front of me.

That afternoon I called up the director and told her this was not the right class for him. I wanted him in the 2’s. She decided to observe him in the 3’s while I sat in the 2’s by myself, and then we would switch. He would go into the 2’s room with her, while I sat in the 3’s. This sounded like a good plan. I went into the 2’s room and sat watching the other kids. Each one came in and seemed to know just what to do. Some chose the Play-Doh station, and I marveled at how none of them wanted to taste it. Some of the girls went over to the pretend table and played tea party. Nobody cried, climbed, or screeched, and nobody went on a treasure hunt for staples. I started feeling rather crestfallen, but I continued to observe and chat a little bit with the teachers, trying to prepare them for my son and his “issues.” At one point, I looked up and noticed a small sign on the wall, well above eye level, practically touching the ceiling. It was as though the sign was never intended to be read. It said:

“Childhood is a journey, not a race.”

I agreed with that and felt encouraged by it. Maybe this was the school’s philosophy, too. Maybe the director would be progressive and figure out a way to make this work. As I sat there thinking about the words on the sign above me, I could hear my son making loud noises from the other room. The rooms for the 2’s and 3’s were separated by swinging doors. I had just noticed that.

Why hadn’t I noticed that before? Come to think of it, there are swinging doors on three sides of this room. Did that little girl just go into the 3’s room? Didn’t anyone just see that happen? Not a good sign.

From the other side of those swinging doors, my son was sounding very much like a pterodactyl: you couldn’t quite tell if he was happy, upset, or angry. It was a loud, squawking sound. It seemed louder and more unusual than anything I had heard at home. The director summoned me to switch rooms, and I walked into the 3’s, again sitting alone watching other people’s children, feeling emotionally naked and depressed. I sat there and watched all these 3’s in circle time and craft time.

Why am I sitting here observing a class my son will never be in?

I dutifully went through the charade of observing this class, because I was told I should do that. This is the story of my life: Be dutiful, think later, then rebel. I was only up to the dutiful part so far. Why didn’t I just tell her, “This is entirely unnecessary. I already observed him in this class, and I can tell you that it is not appropriate for him”? As I sat there feeling uncomfortable, hearing his squawking coming from the 2’s, dreading the director’s verdict, and watching all these other children doing the preschool thing, my eyes started filling up—but I did manage not to cry. That’s another thing I hate: crying in front of total strangers. I started to cry because I was not where I am today in my thoughts about autism. I was midway between seeing autism as a disease and autism as a difference. Autism was more like a family secret that I had hoped nobody would notice this time around.

The assistant teacher came over to me and asked me if everything was alright, and of course I lied and said I was fine and just observing the class. She was the one who asked me the day before if my son was able to respond to his own name. Not only did he not recognize his name on the name tag she held out for him, but he didn’t even turn his head when she called his name. He wouldn’t look at her. He wanted to get the Mega Blocks out so he could put them in rainbow order and then toss them behind his back, one by one, not even looking to see where they landed. Had I never complained about this class, it would have taken the teachers only a day to have him pegged as autistic. Maybe I was running from that, trying to buy him more time by putting him in the 2’s. It didn’t work.

The director had finished her observation, and she called me to come down to her office along with my son. I didn’t say anything as we walked down the stairs. I wasn’t positive what she was going to say, because the squawking had diminished considerably when he went into the 2’s class, but I couldn’t see what he was doing in there either. She sat down and told me she had some “concerns.” I pretended not to know what she was going to say. She then showed me the notes she had taken while observing him in both classes. I remember that there were six things she jotted down. I think they were:

Eye contact
Pacing/wandering
Loud, calling-out sounds
Rocking on feet
Play skills
Speech

She noted that he was able to respond verbally to some questions, but that his overall development was very delayed, at least by a year in some areas. I wish she had stopped there, but then she started whipping out developmental charts for 2 year olds and 3 year olds. I thought that was kind of presumptuous. She seemed like an armchair diagnostician, and I didn’t like it. Her charts reminded me of the Denver Prescreening Developmental Questionnaire that I had to fill out at the pediatrician’s office at every well-baby visit. It is a scale to chart developmental milestones and screen for children who are falling behind. After she said she thought he should be formally evaluated by the county, I just said:

“Are you going to kick him out?”

I stared at her while she tried to gather her thoughts together. I wanted to catch her off-guard and see how she would respond. She quickly denied that she would ever do that, and she assured me that he would be fine in the 2’s. I became strangely defiant at this point in the conversation. For some reason, I didn’t want her to know that I already knew what she was going to say. I didn’t want to tell her that I was already aware of his delays, and that I had suspected he was on the autistic spectrum for quite some time. I wanted to see what she was going to say, how she was going to say it, and what she was actually going to do. I thanked her and took my son upstairs and out to the car. As far as I knew, he was going to stay in the 2’s, and I was going to go along—dutifully, and against every fiber in my being—with the plan to have him formally evaluated by the county, just so that they would not kick him out. Years ago, my middle son had been kicked out of so many classes and schools; I didn’t want this to happen to my little guy. But an evaluation never ended up happening anyway.

My son attended one half-day of school in the 2’s. I was late picking him up, and when I entered the room he was the only child there. He was sitting on a rocking horse, rocking and smiling. He greeted me with those gorgeous eyes, and I thought he seemed happy. I couldn’t figure out, though, why he was the only kid in the room. The two teachers mumbled something about early pick-up, which nobody had told me about. Something wasn’t right. They were just looking at me, strangely, as though I had food on my face or an unbuttoned shirt. It seemed like they were trying to be polite by not saying anything to me at all, not even anything to my son.

Not long after I got home, the director called me to say that my son could not attend the school without an aide. She said the teachers complained that he kept getting out of the room—the room with swinging doors on three sides. I would have to pay for the aide out of my own pocket until the county could set up an on-site evaluation and pay for someone to shadow him. I became angry while talking to her, but I stuffed it.

Who would put a group of two-year-olds in a classroom that did not have proper doors?

This was her first year as a director, but I considered this a major oversight. I said, “He was probably just looking for me,” but later I started doing a lot of thinking, and I was getting madder. I wondered why the rooms for the four- and five-year-olds had a single door with a door knob, but the classrooms that really needed doors didn’t have them. Two other kids walked out of the 2’s room in the short time I was there observing the classrooms.

Were they going to need a shadow, too? No, of course not. They were just “active,” not autistic.

That’s when I realized why the teachers were staring at me and not saying anything. They had been debriefed.

Toward the end of this phone conversation, I didn’t bother to ask the director for time to think about what I wanted to do. I just told her that getting an aide would not be necessary, because I was withdrawing my son from their school. She said she was sorry to hear that. I needed to go back to the school to pick up his things, and so I had the opportunity to talk to her again. We were walking down the hallway, and even though the word “autism” had never come up in any of our conversations, she casually mentioned that she had a friend who wrote a book about raising her autistic son.

Oh, I get it. She is an expert on autism because she knows a woman who wrote a book about it.

I quipped, “Sure, I’ll read it in my spare time,” and she braced at my bluntness. I knew I had probably offended her at that point, but it was too late and I couldn’t take it back. I decided that there was just no point faking it anymore with her, so I turned to her and said:

“Look. I know all about autism. My middle son is autistic. I am a veteran.”

It took her a moment to get her composure. She was probably trying to figure out why I hadn't just told her all this from the beginning. As I was leaving, she told me her friend’s name and the title of the book, but I could not retain the information because I was too busy thinking. I was trying to process this school, this director, and the sign upon the wall.

“Childhood is a journey, not a race.”

My oldest son’s principal was fond of slapping feel-good messages and other platitudes all over the walls of his old elementary school. By fifth grade, my son became embarrassed and irritated by these corny posters. He felt it was an insult to everyone’s intelligence—not just the kids—and he hated how this principle seemed to be trying too hard to turn his plain old school into a blue ribbon one. Thankfully, my youngest son was too young to read, understand, and ultimately see through the hypocrisy of this sign on the wall, but I was left asking myself this question:

What kind of journey is childhood according to most educators?

I think the journey they are talking about does not include children who take a circuitous route or walk too slow. It is a journey that follows a straight path marked by milestones—developmental milestones—carved in stone and embedded deeply in the ground. I don’t believe that most educators truly believe that childhood is “a” journey, because if it were any journey it could start anywhere, follow any path, go at any speed, stop at any rest stop, and end in places not necessarily intended or expected.

I found to my surprise, though, that not every church school is a rinky dinky day school. A few months ago, I visited one unlike any I had ever seen or heard about. I didn’t see any kids marching around like tin soldiers, and there were no platitudes posted on the walls. The director and I talked a great deal about the trouble with preschools these days. We discussed how kindergartens are becomingly increasingly academic and rigorous, and how this is having a trickle-down effect on preschools everywhere. Many children cannot keep up, simply because they aren’t ready for all of this structure. Her philosophy is to let kids be kids, let them get messy and explore, and let them work out things among themselves, with gentle guidance from the teachers. To my neighbor, this seemed like glorified babysitting; to me, it seemed like a safe haven for my son. The director knows all about my son and his so-called developmental delays, and she wants him anyway. I did not tell her that he is autistic, because his traits are rather mild and he is still very young, but if she were to ask me I would tell her the truth without shame. It could be that this image I keep having of a giant banner waving over a church no longer has to be some cherished fantasy. I believe there is a church out there that wants my autistic kid, and I just might have found it.

Lisa Jean Collins c 2005

2005-08-31T00:23:00.000-04:00

Seeing Robert

When I found out that Robert was coming home, I felt I had to see him this time around. He was going to be visiting with his family for two weeks this summer, and I didn’t want to miss this opportunity to see him face to face. Over the years I had heard from time to time that he was coming home, but for some reason this time I felt a sense of urgency. I don’t know if it was my needing some sort of closure, or if it was because I had heard so many wonderful things about how he is doing now. His mom told me that just this year he began signing spontaneously, perhaps picking it up from some of his friends. I had seen a picture of him about a year ago, and I thought he really looked like Adam Sandler, only skinnier. I wanted to see if he really did look like Sandler, or if the picture was lying. I heard he had gotten very tall (over six feet, just like his brother, the Aspie engineering major), that he was awfully silly these days, and that he had learned how to say “no.”

A few years ago, Robert moved out of his home and into a residential facility. At first, the transition and visitations were hard on him. I remember the first time he came home for a visit, he seemed very unhappy, maybe because he was somewhat disoriented, not knowing which place to call “home” anymore. I remember vividly the frantic phone call I got from his little sister. She asked me if she could come over because Robert was really upset and she was scared. I said she could, and eventually he calmed down and his sister was able to go home. At this time, Robert was still squeezing his mom’s arm too hard, and he was making a lot of sad noises. I felt bad for him and hoped that he would eventually settle into his new environment.

After the initial rocky start, it didn’t take too long for Robert to get used to living away from home. His mom used to tell me stories about how she would bring him his favorite foods, and how much they enjoyed each other when she would come up to visit him. He seemed happy when she was there, but also perfectly fine when it was time for her to go. He had made friends, and the staff considered him to be one of the easier residents. Unlike many of the other boys, Robert is fully independent with toileting and other self-help skills. His mom believes Robert benefited from years and years of applied behavioral analysis (ABA) in that respect, because the boys who do not have toileting skills never received ABA therapy. She could be right. I don’t know. This is a subject that is painful for us to talk about, because our boys had such different experiences and different needs. She is mostly a believer in ABA, and she told me she wished she could have started it sooner with Robert, preferably by age 3. After 2 years of doing ABA with my son, I came to the conclusion that ABA was seriously flawed, and that it had harmed my son socially and emotionally, even though I couldn’t and still can’t prove this to anyone. She told me once, choking back tears, that if she had started ABA with Robert early, perhaps Robert could have ended up like my son, who is verbal and now considered high-functioning. Robert is labeled low-functioning and severely mentally retarded. I just stood there. I didn’t know what to say. I felt a great deal of empathy for her, but I didn’t know how to show it. I still don’t. I felt a kind of “survivor’s guilt,” even though there is no proof that ABA—if started at age 3—would have turned Robert into a boy resembling my son. And yet, that is a feeling she expressed to me, and I still don’t know what to do with it. I feel bad for anyone who is living in a state of regret. This must be a terrible feeling.

She told me that Robert used to be able to label everything, but he never got past the point of saying nouns. Eventually he lost the ability to speak at all. I never knew him when he was able to speak. When we moved into this neighborhood twelve years ago, his speech was already long gone. I think he was about 4 years old at the time. I was pregnant with my second child, and my oldest was 21 months old. The boxes weren’t even unpacked yet when I bumped into Robert and his mom. Robert was riding around the block in his Big Wheel, and before I knew it I was getting a crash course in autism. I observed Robert trying to climb a metal pole on the corner. We have a corner house, and this pole is the one that has the names of the two cross streets. You can’t really climb it, but he was determined, and he got halfway up while we were talking, that first time we met.

I didn’t know what to make of Robert and his mom. I could see that she was very intense right from the start. I kept trying to get away. Autism was making me uncomfortable. Talking about her autistic son was making me uncomfortable. Every time I ran into her after that, all we talked about was Robert and Robert’s autism. I started tuning out and being polite—there, but not really there. I could not relate to anything she was saying to me. I had no real interest in and certainly no understanding of autism. The only autistic person I ever saw was Robert. I couldn’t help but wonder why mom was so absorbed in Robert and never really talked about her other kids all that much, or so it seemed to me. Robert had swallowed up that family, I thought. Wouldn’t her time be better served devoting her energies to her other two kids, who had so much more promise?

You could say I was heartless, and I think I definitely was to a point, but I would say that my heartlessness was driven by ignorance. Twelve years ago, autism was not even something that happened to “other people.” The face of autism was Robert and Rainman only. I personally knew no other autistic person besides Robert. But even in my complete ignorance, I still observed him (without making much sense of what I was observing) and took mental notes. I remember how he used to crawl on the ladder on top of the swing set and wouldn’t come down. I remember how he used to play in the sandbox at length, well past the age when kids play in sandboxes. I remember that scary day when he disappeared. I was in my back yard (we live two doors down from them), when I heard his mom scream “Robert!!!” so loudly and frantically that I froze. This was a different kind of “Robert scream.” Something was terribly wrong. His bike was on the sidewalk, but he was gone. Eventually he turned up in a neighbor’s kitchen, eating cookies or something, but it drove home how vulnerable he was, not being able to speak and being easy prey for a child snatcher.

About three years after we moved in, my son—the one who moved into the neighborhood while still in my belly—was diagnosed with autism as well. I felt I had been cursed for being so heartless toward Robert and his family. This was my punishment for not wanting to talk about Robert all the time, and for being nervous that his mom was going to bring Robert to my other son’s birthday party and ruin it. I remembered my grandmother’s admonishment to me like it was yesterday. I was griping that she shouldn’t bring Robert and asked, rhetorically, why she always had to talk about Robert. She just turned to me and said in the softest voice, “But she’s hurting, Lisa.” This stung. I think this was the turning point for me, even though I didn’t realize it at the time.

When my middle son was diagnosed, I wrestled with God. I cried—a lot—for many years until, over time, I realized I had not been cursed at all. I didn’t think I had been exactly blessed yet (this feeling came much more recently), but I started thinking that of all neighborhoods for God to put me in, wasn’t it great that He put me next door to a family with two kids on the autism spectrum? Wasn’t it better that I actually had someone to talk to and share stories with, someone to support me and for me to support through friendship and understanding? Wasn’t this better than being out in the boondocks somewhere? I started warming up to her, and she to me. Over time we became friends. Gone were the days when I shut her out and only pretended to be listening about Robert. I wanted to know, and I was genuinely interested in and concerned about everything he was doing. I had a bond with her that I could never have with any of my other neighbors. Our sons had forged that relationship, even though they ended up taking different paths as they grew.

My son’s ABA was abruptly cut short one summer afternoon, when he screamed that he didn’t want to “do this anymore,” flipping his table upside down and scattering his materials all over the floor. He ended up entering and being kicked out of several school programs before finally, by around third grade, aggressing less and less and doing better and better in school. This year the district is attempting full inclusion in a regular fifth-grade class, with autistic support for two academic subjects and social skills. We are all hoping this is a turning point for him, and that he will be able to function in a class that is four times the size of the self-contained class he was in last year. It is going to be a drastic change.

As Robert got older, I noticed that his vocalizations sounded more mournful. I could hear him in the back yard, swinging and making loud, moaning sounds. His mom told me that as he got bigger, she was getting bruised up quite a bit. I remember when he broke the refrigerator door off the hinges and ripped the sink out of the wall. She told me he was beginning to show signs of depression. He needed to be around other kids his age, and he needed things to do throughout his day. There was no way they could meet his needs at home, and they eventually made the decision to put him in a residential placement. They were extremely fortunate to have found a place not too far from where they live, making frequent visits more than doable.

When I found out that Robert was going to be moving out, I had very mixed feelings. On the one hand, I was happy that they had found a place they liked. I was happy that they were going to get a much-needed break, and that they would now have more time to spend with their daughter. She was always so quiet, but now she could take the spotlight, being an “only child” for the first time, with both of her brothers out of the house. The oldest son was away at college, and now Robert was going to be leaving soon. On the other hand, I felt a sense of loss. No matter how hard it was over the years, he was still the boy next door to me, the little 4-year-old boy who climbed my pole all those years ago. Even more, to me he was the 10-year-old boy who used to stop in front of my house and hug me whenever he would see me while out walking around the block with his aide. I felt lucky that he wanted to hug me.

When I came to see Robert yesterday, I was filled with anticipation. Would he remember me? Would he want me to leave? Would he hug me like he did all those years ago? My youngest son and I walked into the house, and things still looked very much the same. The house had been ravaged by all the years of Robert living at home, and the Aspie dad was still making it hard to clean up for any stretch of time. Mom tried recently, but despite all her efforts, the “collections” were starting to pile up again. I didn’t care. I was there to see Robert.

I walked in tentatively, not knowing exactly what kind of response I was going to get. He was sitting on the couch in the family room. He was kind of in a frog position, with his feet up on the couch and his bony knees pointing upward on each side. I could not believe how big he had gotten and how hairy his legs were. It was a shock to me because perhaps I still saw Robert as the little boy who used to finger-paint ketchup on the kitchen table in the next room. As soon as he saw me, he pulled his shirt up just below his eyes and started peeking out at me, giggling. I smiled at him and said hi. I was glad he was not upset that I was there, but I soon realized that I was taking away his one-on-one time with his mom. Before I got there, they had been sitting on the couch together, holding hands. All the time I was there, he kept pulling her away from me and trying to get her to sit back down on the couch again. He took my being there pretty well, though, and he eventually smiled at me and laughed some. All this time I was wondering if he remembered me. I wanted him to remember me. I believe he did.

We didn’t stay very long. I let my son feed their bird a “cookie” (it was actually a stick of some sort with bird seed on it, but that’s what he called it), and then we went back into the family room to say goodbye. I asked Robert if I could shake his hand, but he didn’t want to. He pulled back a little bit, hiding behind his shirt and giggling at me. So then I just said, “Okay, bye Robert!” and he waved goodbye to me in a way that I’ve only seen Robert do. He undulates his palm with his fingers curled inward, but it is very much a wave goodbye. I was happy to have that exchange with him. As I was about to leave, he pulled mom back down on the couch, right where he wanted her. He took her hand in his, and they looked as happy as any mother and son could be.

I walked out of the house holding my son’s hand, trying to take in all that I saw and felt. Twelve years was a long time. In rapid succession, pictures of Robert from then to now started flipping through my mind. Then it dawned on me. Even though I had just seen Robert again, I was really only seeing him for the first time.

Lisa Jean Collins c 2005

2005-08-29T15:29:00.000-04:00

A Loss For Words

The gig was over, and it was time to pack up and get out of there. We brought the kids to come see dad play at the Willingboro Jazz Festival, but there was no way we were going to be able to stay once dad’s band was finished playing. It was hot, and each of my kids was falling apart in different ways. My oldest was completely mortified that his autistic brother had just been dancing to the salsa music not far from center stage. He begged me to make him stop, but I told him to just leave him alone and let him dance. I knew exactly what he was thinking. He was remembering how his brother danced in front of a crowd of people many years ago at another outdoor jazz festival, how embarrassed he was then, and how—just like now—I wouldn’t make him stop. He got up and stormed off. I didn’t know where he was going, but I wasn’t really concerned either. We both had our cell phones.

My youngest was tired and sticky and had had enough of sitting outside in the blazing heat, even though we had brought folding chairs hoping to make it more comfortable for everyone. It wouldn’t have been a family outing without at least one woman getting up to move her chair away from us, so of course that happened, too. My middle son, the autistic one, wanted a giant twisted pretzel with extra salt, but when he took a bite out of the part that was saltiest, he spit it out in a loud spray and got the classic startled look, hurried fidgeting, and chair shift and turn.

As soon as the last note played and the first set of hands clapped, I collapsed all the chairs and started shoving them into their sleeves. We all started marching for the car when my husband intercepted us and said I should come and say hi to the band. I didn’t want to. I was getting anxious. I started making up excuses about bathrooms and kids killing each other in the car. It didn’t matter. I ended up having to go with my little one in tow, all the while hoping I didn’t come back to the car to find that the older two had been pinching and punching each other the whole time. So, while greeting and shaking hands, I kept looking back at the car feeling nervous. My husband wasn’t, though.

“But they’re going to kill each other,” I said.

“So, let them,” he said.

I laughed about it later in the car with my oldest son. I said we should call dad The Mayor. He likes to schmooze; I don’t. Then again, I am not the one trying to drum up gigs and make connections. Maybe my husband just wanted the band to know he was still actually married. It has been many years since I’ve been to one of his gigs. Before we had kids, I used to go to all of them.

So we were back there behind the stage meeting and greeting, when my husband took us over to one of the band members and his wife, who was holding their daughter on her hip. I was also holding my son on my hip. As awkward as that might have looked, I do it all the time. Sometimes I think I do it as much to anchor me to the ground as to keep him comforted and contained. He weighs close to 40 pounds.

“This is my wife. You’ve met Lisa, haven’t you?”

I shook her hand, but I don’t remember if I said anything or not. Then he introduced our son to her. He looked away and didn’t say anything.

“At a loss for words, huh?” she said.

Everything stood still for me at that moment. My face went blank and I didn’t say anything. I’m sure I was expressionless. That’s because I was trying to process these words. They sounded strange to me, and something wasn’t right about the scene itself. Her daughter wasn’t saying anything either. Her baby was probably two years old, though; my “baby” is going to be four in November. Still. I wondered why she said that. Of course, she couldn’t have known the impact those words would have on me, considering that my littlest son is probably autistic, too. She couldn’t have known how many times other people have said similar things to my son in public. How could I be mad at her when she did not even understand how loaded her words were? To her, she was just making light chit-chat. To me, the words packed a powerful punch, but not in the way they used to. I marveled to myself that I was not getting mad like I usually do.

I started thinking about all the people in checkout lines who have tried to engage my son but were unsuccessful. One was a customer in K Mart. He editorialized that my son was a “man of few words.” I might have mumbled something about my son just being shy. I had used “shy,” “sick,” and “sleepy” many times before as excuses for my son’s lack of eye contact and speech. Another was a bagger at our supermarket who really got my panties in a bunch one day. My son was sitting in the little seat, and the bagger was talking to him but getting no response. Finally, he waved his hand in front of my son’s eyes and turned to the cashier and said:

“Is he awake?”

By this time, my son was a little older and my mood had shifted from denial and excuses to anger at people’s audacity. I was in the “It’s none of your business!” and “How dare you?” phase of handling having another autistic child.

But today was different. I realized I had undergone some kind of transformation, because the words no longer evoked a visceral response. I wondered at first at the words themselves, and why anyone would use an idiomatic expression like that on a 3 year old who wasn’t talking, but then something else happened: The words, or their meanings, started shape-shifting inside my head.

“At—a loss—for words?”

All of a sudden I began to realize what the real problem was, and why people everywhere I go feel compelled to engage with my son and then comment if they don’t get the response they expect to get. The problem was not with my son, but with them.

Most neurotypical people are hooked on words. They want them. They need them. If they don’t get them, they persist or protest in many ways. When they encounter an autistic person or a child who is supposed to be talking and isn’t, they find themselves at a loss for words because they do not get the expected response. This makes them uncomfortable, so they feel compelled to make some kind of comment. Sometimes the comment is meant to be polite and light-hearted; other times, people can come off as intrusive and rude, like the bagger in the supermarket. I’ve seen strangers make excuses for my child, saying, “Aw, he must not be feeling very well.” But no matter where we go, other people find the need to openly interpret why my child isn’t talking or engaging with them. I don’t do this when I meet children. I observe them. Maybe I don’t have as great a need for other children to communicate with me. Maybe I don’t feel that every observation requires a comment. Maybe it’s because I’m just used to my kids not talking to me.

A year or two ago, I picked up the habit—echoed from other mothers saying this on playgrounds—of telling my middle autistic son, who is eleven, to “use his words” instead of acting out physically when he was upset about something. He would hate it whenever I would say, “Use your words.” You could see that he was distressed. He would arch his back, close his eyes, cover his face, and say, “I can’t!” in a squeezed, guttural tone of voice. I dropped this expression soon after because it was upsetting him. My son is verbal, but it still pains him to “use his words” when he is stressed out, overloaded, and ultimately melting down. You could say that he is verbal at times, and nonverbal at other times. He uses his body to express extreme feelings. When he is upset, or embarrassed, or something else unknown to me, he turns into a “tiger” and bites me, or other times he flops down on the floor. Kicking the wall means something else, too. So does an arm squeeze. When he is happy or feeling proud of himself, he will rock on his feet, back and forth or front to back, and smile at his fingernails. He might make some happy noises, too, while cocking his head to one side. My son is a performance artist of sorts.

All of these bodily movements have special meanings to my son, and someday he might be able to map them out for me, if he wants to. But he doesn’t need words to express his feelings during those times. He has movement. For all I know, those movements don’t even have words in any language. My mother once said that in heaven there are colors we have never seen. Every time I think about colors I have never seen I get kind of stuck in my mind. It’s kind of like contemplating infinity.

Is it autistics who are “at a loss” because they can’t speak, can’t speak yet, or can’t speak the way other people expect them to, or is it neurotypicals who are “at a loss” because they rely so heavily upon words for communication? While demanding that their kids “use their words” all the time, are they missing other nonverbal cues and gestures that could be even more meaningful and that maybe don’t even have words?

My youngest son melts into my arms when he hugs me. Sometimes when he is hugging me deeply, he will rock his body, slightly, while humming. I start humming, too. There are no words to express the feeling that comes over me. It is more than affection, more than love. When I’m getting him ready for bed, he likes me to throw him on the bed. He gets so much joy from that, and after I throw him, he will often just stare intently into my eyes, smiling broadly. This look means more than just, “That was fun.” It’s more like, “I love you. Thank you. That was fun. Thanks for understanding me. Thanks for knowing what I like. Thanks for being my mom.”

I am trying to teach my children verbal language, and I do use words as my primary mode of communication. But, I realize now that in my quest to teach language there are many things my kids have done along the way that I may have missed, considered unimportant, or considered less valuable than the spoken word. I don’t consider myself neurotypical, but because I can be very rigid and rule-bound, throughout my life I have been intimidated by social expectations and ruled by perfectionism. This has spilled over into my parenting and teaching, and it has often caused more harm than good.

All of this brings to mind a very unusual Bible verse:

Likewise the Spirit also helpeth our infirmities: for we know not what we should pray for as we ought: but the Spirit itself maketh intercession for us with groanings which cannot be uttered. (Romans 8:26)

In the realm of the spirit, even the most verbal person is nonverbal. He may be at a loss for words, but he has gained communication with God. Words are no longer relevant. Are spoken words as important and as powerful as they are thought to be, or are they overrated? If most neurotypicals are overly reliant upon words—to the exclusion of other forms of communication—who is at a loss, really?

Lisa Jean Collins c 2005

2005-08-26T16:30:00.000-04:00

Think Autism: Think Dogs

I am not a dog person. That is not to say I don’t like dogs. In fact, someday I’d like to have a dog and see what it’s like to take care of one. I have been surrounded by cats since I was a baby. I have two very geriatric cats, from a litter born on Valentine’s day. It would be accurate to say I am a cat person. And yet, I do know something about dogs. Maybe I picked up little bits of information from the Internet or books, but more likely what I know about dogs comes from snapshots of dogs throughout my life. I remember the Doberman pinscher that chased me and jumped on my back, knocking me down, making me fear them for a very long time. I remember the Great Dane that lived downstairs from me when I was a little girl living in a small apartment in Queens. I remember the unbelievably large Saint Bernard that looked to me as big and as cuddly as a sofa. I never liked yapping dogs, like Chihuahuas. I learned about Dalmatians from watching the movie, and Lady and the Tramp was not unhelpful either in giving me an overall impression of what all different dogs are like.

Despite my very limited knowledge of dogs, I know that some dogs are great hunters, some great racers. Some are valued for their temperament, while others are prized for their ability to scare off intruders. I know that very few dogs would make good seeing-eye dogs. Maybe even one kind of dog can do that: Labrador retrievers.

I know that some dogs have a long life span, while others do not. Some dog lovers will not choose a dog that will not live very long, because to them losing a dog so soon would cause them a terrible amount of grief. My neighbors expressed to me that losing their dog was like losing a family member.

Every dog owner trains a new puppy and expects that puppy to do the basics: eat, drink, potty train, and not attack the family. Beyond that, the dog is allowed to do what that kind of dog does. If a friendly dog is suddenly lunging for the baby, that is a problem. If a guard dog is a sissy, that is a problem. Some dogs are on Prozac, I’ve heard. The only dogs I’ve ever heard of getting put down are pit bulls and maybe a mastiff. There have been things on the news. But even then, everyone knows that pit bulls are notoriously dangerous, and few people in their right minds would want to own one or live next door to one. (But think: tigers are also dangerous, but that doesn’t mean they are bad. Every animal that is dangerous to humans when placed in the wrong environment is a good animal just doing his thing if placed in the proper environment.) Poodles like to get manicured, Labs like to chase sticks, Chihuahuas yap, and boxers drool...but all of these critters are dogs, and nobody would ever try to turn one of these dogs into the other.

Now let’s look at humans. It is assumed that there is one kind of human: a normal human. Any human that differs from what we have been told is a normal human is considered—and has been seriously posited to be throughout history—either sub-human or not human. African-American males were once considered in the United States to be two-thirds of a man, if I remember my history lesson correctly. The “mentally infirm” have always been considered less than human. To think is to be, so if you think differently or appear to be thinking less than normal humans, you are either feared or hated. African-Americans have also been vilified by whites as being closer to apes or monkeys: by making an entire race of people non-human, you can justify your actions against them, it would seem. The Jews experienced this in Nazi Germany, and their skins were used to make lampshades.

Lest anyone think this sort of mentality has not affected autistic people, think again: Hitler murdered countless “mentally infirm” people, of whom autistics no doubt were a part, and there is proof that autistics are being killed both in and out of institutions. Parents who have killed their autistic children have been looked at with pity, as though they were actually the victim of a crime. Autistics adults have been said to be more “childlike,” which is a way of saying that they are still human, but not exactly adult humans. I have even read someone’s theory recently that autistics descended from the Neanderthals.

Could it be that everyone has it all wrong? Why is it so simple to understand that there are many kinds of dogs that do all different things and look all different ways, and yet each is fully and legitimately a dog—but when it comes to humans, the urge to conform to only one type of human is so strong that it has destroyed people, families, and communities? People have tortured and killed autistics, and some have even taken their own lives because having an autistic child was too much for them to bear. I just heard about a woman with an autistic 7-year-old child who for whatever personal reasons took her own life. I don’t know her, and I don’t even know the woman who knew her as a friend and posted the news to an Internet group, but when I read it I was overcome with so many conflicting feelings: sadness, confusion, numbness, and other feelings that I don’t even know how to identify. But as sad as this truly is, it hit me today that this woman left her son motherless. If only she realized that she was a good mother and her son was a good son, not some empty shell of a child she dreamed up but never got to see, hold, and talk to the way she expected.

I want to ask the world a simple—a ridiculously simple—question. Why can’t there be many kinds of human beings that do all sorts of things in all sorts of ways that are very different from one another, and yet all perfectly normal for that kind of human? It is perfectly normal for autistic people to pace, flap, rock, talk to themselves, spin themselves, spin objects, script things they have heard in books and movies, make noises, laugh for no apparent reason, cry for no apparent reason. My son does something I have never seen any autistic person do: he grins, makes a little noise, and looks intently into his fingernails. Sometimes he does this over and over again while swinging on the swing in our backyard. Sometimes he does it when he is really proud of something he has done. This is a mannerism that calms him down and makes him happy. It is something very unique and very special to my son.

But as a whole, there is a set of traits that is very unique and very special to a whole family—some have even said race—of autistic humans. It would be as pointless, bizarre, or even cruel depending on the severity and persistence of the attempt, to try and change a Chihuahua into a St. Bernard. But what is happening to autistic humans all around the world? The world is trying to change autistic humans into nonautistic humans, and the next step is to make sure that autism never again sullies the gene pool of the human race as it is understood by nonautistic humans. It is not enough for autistic humans to be doing what autistic humans do, and it is not enough for them to be happy doing it, either. No. They must not be who and what they are. If they do not conform to the satisfaction of some families or society as a whole, many forms of societal retaliation can take place, from bullying to segregation to forced drugging to institutionalization. A word about the latter: there are some families who truly adore their autistic children and care for them up until the last possible moment that they are physically capable of caring for them. Once some kids reach their teen years, it can become too difficult for some families to continue keeping their autistic children at home, and for the sake of everyone concerned and with a heavy heart, the decision is made to put the child in a residential setting. That is not what I am talking about. I’m talking about little kids being shipped off to institutions because their parents are too busy or would be too socially stigmatized to have a child like this. The child simply has to go.

Not long ago, I saw an advertisement in a magazine about the subject of autism. Not pro-autism or for autistics, but about autism—as in, how to kill it. The ad was simple and straightforward:

Think Autism: Think Cure

To me this is just a quick and slick “Got Milk?”-style repackaging of the philosophy espoused by the Cure Autism Now folk and all the other groups that keep springing up like mushrooms all over the so-called autism community. There is no more an autism community than there is a human community. There are autism advocates and then there are autism advocates: these groups can stand for diametrically opposed ideas. CAN is advocating against the entity called autism. They want it eradicated because they consider it a disease, like cancer, or an “act of God,” like a tsunami. Autistic adults and those who love them are advocating for the fair treatment, respect, and understanding of autism and autistics as fully and legitimately human, not broken, diseased, distorted, or missing some pieces. Every time I see a car with an “autism awareness” puzzle ribbon displayed, I get the message loud and clear:

Autistics are not whole. They have pieces missing.

Have you ever bought a jigsaw puzzle at a yard sale, sat down and spent a lot of time trying to put it together, only to find that there were pieces missing? If so, what was that puzzle worth to you then? It became worthless, because there were pieces missing. You became frustrated that you spent all that time and effort trying to put together a worthless puzzle. While you were in the process, you had hopes of completing that puzzle, but once you came to the realization that your puzzle was worthless, what else could you do but dump all those pieces back into the box and throw the box away? Some autistics are thrown away like that, sure. But others are subjected to society’s relentless pursuit of their missing puzzle pieces, pieces that were never missing to begin with. As these autistic children become autistic adults, many come to the realization that society views them as worthless as an incomplete jigsaw puzzle, and this leads to extreme feelings of self-loathing, in some cases bordering on suicide. I am not aware of a phenomenon of autistic suicide, but I would not at all be surprised if this is something very real and happening all over the world and yet not reported in the headlines. Other autistics, however, have moved past this and have become self-advocates. They never forget those days that they wished they were dead or had never been born, but they have come to terms with the events and experiences in their lives that led up to those feelings, and they are no longer living under the tyranny of society’s impossible expectation: that autistic humans should become nonautistic humans or pay the price.

So, when you think autism, don’t think cure: think dogs. I have another son who also has a fair amount of autistic traits. I don’t know if he will eventually be formally diagnosed or if he will slip just below the blaring autism radar screen. My little guy loves a book called Go, Dog. Go! by P.D. Eastman. He could say “Go, Dog. Go! by P.D. Eastman” before he could form a sentence or carry on any kind of reciprocal communication. The opening line of the book goes like this:

“Dog. Big dog. Little dog. Big and little dogs. Black and white dogs.”

The idea for the preschool set is that there are all kinds of dogs of all different shapes, colors, and sizes, and these dogs, we eventually learn, really know how to party. Intermixed with this theme are two dogs, one a pink female poodle and the other a yellow male beagle. The pink poodle spends the entire book trying to get the yellow beagle to like her hat, but he never does. Here’s what happens at the end:

A dog party!
A big dog party!
Big dogs, little dogs,
red dogs, blue dogs,
yellow dogs, green dogs,
black dogs, and white dogs
are all at a dog party!
What a dog party!

Once these dogs—including the pink poodle and the yellow beagle—learn how to party (instead of working and going around in circles all the time), the yellow beagle finally likes the pink poodle’s hat and they drive off into the sunset.

All our autistic kids are pink poodles wearing their own particular autistic hat. As parents, as autistic parents especially, we should teach our autistic kids to bypass pages and pages of their lives trying to get the yellow beagles to like their hat. Instead, we should teach our kids to love their hats, be happy pink poodles, and party on.

Lisa Jean Collins c 2005