Wednesday, August 31, 2005

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

Monday, August 29, 2005

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

Friday, August 26, 2005

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