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

23 Comments:

At 4:28 PM, Blogger Autism Diva said...

Yaaay!

Welcome to blogland. :-)

 
At 5:05 PM, Blogger Clay said...

Hi Lisa Jean,
Nice hat. I've missed you.

 
At 7:13 PM, Blogger Lisa Jean Collins said...

Hi Clay and Ms. Diva,

Glad to see you here. My hat is soft and fits in my pocket. I can take it out whenever I like. I can pull it over my eyes, or I can roll it back depending on my mood.

Ms. Diva's hat turns out to be a tiara. She looks so elegant in it, but if you sit on her hat by accident...ouch!

Now I'm channeling Dr. Seuss:

"Pat sat. Pat sat on hat...No, Pat, no! Don't sit on that!"

 
At 7:15 PM, Blogger Lisa Jean Collins said...

Clay, as you may know already, I've been hosting my own group. I've missed you, too. If you'd like to join my group and see what we're doing over there, please drop me a line.

 
At 5:18 PM, Anonymous beth said...

ooooh..... I LIKE this blog....

 
At 3:30 AM, Blogger Lisa Jean Collins said...

Hi Beth, and welcome. I just finished my second essay, and I'm waiting for some nice folks to take a look at it and check for any mistakes. Then I'll put it up here.

 
At 10:20 AM, Blogger smiling2brneyes said...

Good essay. Looking forward to the next.

 
At 10:39 AM, Blogger Lisa Jean Collins said...

Thanks! I couldn't sleep last night. My friend Kathleen was right when she said this was going to take over my life. I got up at 1:00 and wrote the next one. I didn't get to sleep until 4:00. I polished it up this morning and I'm waiting for some peer review. Then I will post it.

 
At 1:18 PM, Anonymous Bonnie Ventura said...

Wow, what a great essay! I'm looking forward to reading more on this blog!

Three cheers for you and Kathleen too! (Now I'm starting to sound like Dr. Seuss.)

 
At 11:46 AM, Anonymous Kristen Giorgio said...

In September Scribner will release Ann Bauer’s A Wild Ride Up the Cupboards, a riveting, insightful, and very moving look at a family dealing with autism, written by the real-life single mother of an autistic child. I have been moved by the content of your blog, and would very much like to send you a copy for your review.

In the course of her powerful novel, Bauer examines the realities of autism through both the parents’and the child’s perspective, and looks too at the differences between how families dealt with problems like this in the 1950s compared to how they deal with them today. I’m extremely proud of this novel for its obvious literary merits, but also for its ability to engage this subject with such sensitivity, intelligence, and insight.



Lynn Kern Koegel, Ph. D., cofounder of the Autism Research Center at the University of California, Santa Barbara, and coauthor of Overcoming Autism, has said this about Bauer’s novel: “A Wild Ride Up the Cupboards brilliantly and entertainingly portrays a family’s emotional turbulence and the painful fact that much of a parent’s life is fully and completely consumed with the stress and emotional trauma of having an atypical child in our society. Ann Bauer’s gift of empathy clearly shines throughout the pages of this novel.”



If you are interested in reciving a copy of the book for review, please contact me and I will arrange to have one sent.



Sincerely,

Kristen Giorgio
Marketing Manager, Scribner & Touchstone/Fireside
Phone 212-698-7161
Kristen.Giorgio@simonandschuster.com

 
At 11:44 AM, Blogger Lisa Jean Collins said...

Beth and Bonnie,

Thanks, and welcome!

Kristen,

Thanks. I will contact you soon.

 
At 4:23 PM, Blogger Lisa Jean Collins said...

Oh, and *HI* to Smiling2brneyes. Thanks for checking back. There are more essays coming. I have to ride this manic wave before inertia sets in.

 
At 9:35 AM, Blogger smiling2brneyes said...

Hey Lisa Jean - smiling just checking in.

 
At 4:08 PM, Blogger Lisa Jean Collins said...

Hi Smiling,

I got your message in my email inbox today, and when I hit reply I realized you would not get it, so...Here I am again. I wanted to ask you if you were interested in joining my Yahoo group. It is for autie parents raising auties, but there are others in the group who are not in both camps, and one is not even a parent. Either way, let me know by email, which you can find in my profile. Thanks.

 
At 10:21 AM, Anonymous Ftemery at Live Journal said...

My 26 year old son is gay; my 11 year old granson has VATERS. Your essay was every bit as good and mind-opening as "Welcome to Hollond", which, though written for parents of Downs Syndrome children, suits all of us who find we have a child who is a different flavor of "dog". I love the metaphor. Thank you so much for the opportunity for me to continue to learn.

 
At 5:36 PM, Anonymous jparker624 said...

Autiemom,
I am a parent of a 15 year old son who brings me complete and total joy. I've never wanted to cure him, ( he's not a ham) change him (drug him to be normal) or force him to look anyone in the eye(to appear manly and quell others fear). He is whole and complete and no puzzle. Thank you for your wonderful essay. I completely agree with you. I do, I do like your party hat.
Regards to you.

 
At 10:11 AM, Blogger The Gingerbread Taleteller said...

Your post is great and very moving but also realistic. I have a nine year old Asperger's son....and he is lovely and also grins then stares at his hand. Nice blog Autiemom keep writing.

 
At 7:37 AM, Anonymous Patti Blair said...

Autiegrandma,

My grandson is not a dog and I do not compare him to a dog. I have a dog that I love like a child, but I love my grandson as a human being. We try to find cures for Cancer, Aids, Cohn's, etc. That doesn't mean we can't want a cure for Autism. My grandson is a joy to me and makes me laugh and I have learned alot from him. But so many children are being diagnosed and not enough of facilities and therapist for the children being diagnosed. I would hope you wouldn't want your children sitting in a room without any help to become self sufficient. Jesus loves all the little children red, yellow, black and white. That is how I see it, not comparing my grandson with a dog. Typical children go to school to learn, why not Autistic children. They are eager to learn. I understand, yes there is all kinds of people, but they are not animals. What I am saying is, yes we need to find a reason why so many children are diagnosed with Autism and we do need to find a cure. But that doesn't mean we love are Autistic children any less. They need education just like typical children get. Where I live, there are no programs for Autistic children, and therapist are far and few between. I want to see my grandson get the help he needs, possibly a cure one day. Look at the children this would help, our children, grandchildren and so on.
Thank You, Shane's Grammy

 
At 1:25 PM, Blogger Jenny said...

I like your blog. I can see this from both sides if I try really hard. I have a son who is almost 5 and has autism. I love him dearly for who he is and his traits are what makes him so special. I would never want to change who he is, but I think there are definitely some things that go along with the autism that I would like to "cure". For example the fact that my son senses no danger and will run into a busy street if not watched very closely. He is non verbal and this presents all sorts of problems and issues for his learning and his safety as well as his happiness. I fight very hard to help him understand his world and to understand him. I taught him sign language and he is very good at it. He knows about 120 signs and is learning more every day. He is also using PECS at school with success and we will be discussing an augmentative communication device in the near future with his school staff. I only want what is best for him and understanding his world and the world understanding him are what is best for him. But I can't control all of that, I can only guide him and teach him with the best of my ability and try to advocate for him to the rest of the cruel world. First and foremost I want him to know that I adore him just the way he is and that he can achieve his dreams no matter how big they are!

 
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At 1:21 AM, Anonymous Frances said...

As a dog lover, you could also take your dogs to trips by getting yourself one of those used cars for sale by owner.

 

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