More on Autism
With April being Autism Awareness Month, I've been doing a lot of thinking lately. I realized that most everything I know about autism has come from large organizations, well-known websites, and published books and pamphlets. So, for balance, I've been reading a lot of things written by autism-spectrum (AS) people...who better to give voice to the needs and desires of the AS community?
I've never known that there was so much of a divide between the AS community and their supporters, and the people termed "Curebies," who will try just about anything to make their child's autism go away. The latter group, however, is the one getting all the media attention, and so it's their warped view that they lend to society. "Autism awareness" has become code for "make sure everyone knows that autism is the worst possible thing that could happen to your child."
The focus of all of these things describes autism as an epidemic, a tragedy of epic proportions, the ultimate nightmare of parents. Everyone wants to cure it, to fix it...in short, to make autism-spectrum kids like ("indistinguishable from") their neurologically typical (NT) peers.
The more I think about this, the more I think it's a narrow-minded and even cruel goal. The following is going to be a poor comparison because it implies that autism is a disability, but I think it makes a good point.
Let's say you have a child who was born with only one leg. This is a sad situation, to be sure. The parents are upset, and they consult experts about how to deal with and raise their "abnormal," "handicapped" child. The experts give them hope, and reassure them that people with one leg can go on to live normal lives...with a few adaptations. The child is fitted with a prosthetic, and learns to walk, though her stride will never be completely smooth. She goes to occupational and physical therapy, to help her gain strength in her upper body and balanced muscular growth. She can play sports, although she may not ever become Mia Hamm. She can dance, although she may not ever be on the drill team. Sometimes people are cruel to her because she's "retarded" or "different", despite her and her parents' efforts to make her life experience as close to those of the other kids as they can. But given the right adaptations, therapies, and support and encouragement from her parents, she can become a well-adjusted and happy adult.
Why should it be any different for AS kids? Because their differences are, quite literally, in their heads, but manifest themselves in "odd" behaviors, like hand flapping, or rocking, or pacing, or staring at objects for long periods of time. They don't just LOOK different, they ACT different, and people who act different make us uncomfortable. They tend not to make eye contact, and that makes people nervous and suspicious, and makes them think the AS child isn't listening. Often, they can't (or just don't) speak, and are therefore tagged as retarded. They are often ostracized or bullied by their peers because they are easy victims. But given the right adaptations, therapies, and support and encouragement from her parents, the AS child can become a well-adjusted and happy adult. Although "well-adjusted and happy" may LOOK very, very different than what we, as NTs, are accustomed to.
So why are we so focused on making them like us?
Because it's familiar. Because it's what we consider "normal". Because how our children turn out, and how people judge their accomplishments, reflect on our worth as parents. If, somehow, we can get these AS kids to talk, or be mainstreamed into regular classes, or play "functionally" with toys ("functionally" is one of my new least-favorite words...it means, in this context, "like NTs do"; in other words, the right way), WE are successes. How often do you hear the parent of an AS child say, "I just want my child to be happy, and to be the best person they can be"? It's very rare. Why? Because the mass perception is that AS kids can't have that sort of outcome. Or, rather, what their version of "happy" and "best person they can be" is vastly divergent from what the mass perception says it should be, for NTs.
How very, very small of us. I'm joining the crusade for autism awareness -- not spreading hysteria about autism epidemics, or shaking leaflets with crappy science about vaccines, or lamenting about how these children are "lost" little puzzle pieces, but looking for new ways to help and encourage our children be happy, and to be the best people they can be.
These kids are not sick. They don't need to be cured. They need to be understood, and taught, and encouraged, and treated with respect. They have talents and gifts and can make contributions all their own, as long as we don't force them into our mold. It's called diversity, and it's a GOOD thing.
And I promise, I'll not make this into The Autism Blog, but this has been on my mind lately, so tough crackers.
I've never known that there was so much of a divide between the AS community and their supporters, and the people termed "Curebies," who will try just about anything to make their child's autism go away. The latter group, however, is the one getting all the media attention, and so it's their warped view that they lend to society. "Autism awareness" has become code for "make sure everyone knows that autism is the worst possible thing that could happen to your child."
The focus of all of these things describes autism as an epidemic, a tragedy of epic proportions, the ultimate nightmare of parents. Everyone wants to cure it, to fix it...in short, to make autism-spectrum kids like ("indistinguishable from") their neurologically typical (NT) peers.
The more I think about this, the more I think it's a narrow-minded and even cruel goal. The following is going to be a poor comparison because it implies that autism is a disability, but I think it makes a good point.
Let's say you have a child who was born with only one leg. This is a sad situation, to be sure. The parents are upset, and they consult experts about how to deal with and raise their "abnormal," "handicapped" child. The experts give them hope, and reassure them that people with one leg can go on to live normal lives...with a few adaptations. The child is fitted with a prosthetic, and learns to walk, though her stride will never be completely smooth. She goes to occupational and physical therapy, to help her gain strength in her upper body and balanced muscular growth. She can play sports, although she may not ever become Mia Hamm. She can dance, although she may not ever be on the drill team. Sometimes people are cruel to her because she's "retarded" or "different", despite her and her parents' efforts to make her life experience as close to those of the other kids as they can. But given the right adaptations, therapies, and support and encouragement from her parents, she can become a well-adjusted and happy adult.
Why should it be any different for AS kids? Because their differences are, quite literally, in their heads, but manifest themselves in "odd" behaviors, like hand flapping, or rocking, or pacing, or staring at objects for long periods of time. They don't just LOOK different, they ACT different, and people who act different make us uncomfortable. They tend not to make eye contact, and that makes people nervous and suspicious, and makes them think the AS child isn't listening. Often, they can't (or just don't) speak, and are therefore tagged as retarded. They are often ostracized or bullied by their peers because they are easy victims. But given the right adaptations, therapies, and support and encouragement from her parents, the AS child can become a well-adjusted and happy adult. Although "well-adjusted and happy" may LOOK very, very different than what we, as NTs, are accustomed to.
So why are we so focused on making them like us?
Because it's familiar. Because it's what we consider "normal". Because how our children turn out, and how people judge their accomplishments, reflect on our worth as parents. If, somehow, we can get these AS kids to talk, or be mainstreamed into regular classes, or play "functionally" with toys ("functionally" is one of my new least-favorite words...it means, in this context, "like NTs do"; in other words, the right way), WE are successes. How often do you hear the parent of an AS child say, "I just want my child to be happy, and to be the best person they can be"? It's very rare. Why? Because the mass perception is that AS kids can't have that sort of outcome. Or, rather, what their version of "happy" and "best person they can be" is vastly divergent from what the mass perception says it should be, for NTs.
How very, very small of us. I'm joining the crusade for autism awareness -- not spreading hysteria about autism epidemics, or shaking leaflets with crappy science about vaccines, or lamenting about how these children are "lost" little puzzle pieces, but looking for new ways to help and encourage our children be happy, and to be the best people they can be.
These kids are not sick. They don't need to be cured. They need to be understood, and taught, and encouraged, and treated with respect. They have talents and gifts and can make contributions all their own, as long as we don't force them into our mold. It's called diversity, and it's a GOOD thing.
And I promise, I'll not make this into The Autism Blog, but this has been on my mind lately, so tough crackers.
posted by ilse at 10:45 PM
5 Comments:
I feel compelled to let you know that I read your post. I don't have any answers but lots to think about.
Thanks for sharing.
I may have told you that my neighbor has an autistic son and my sister's son was just diagnosed with mild to medium autism. My nephew is in kindergarten and they are trying to kick him out of school. Serious, they live in North Carolina. The teachers main complaints are that he keeps rearranging her posters and when he finishes a paper he doodles on it. Why can't she leave the posters where he puts them and WTF is wrong with doodling - he's bored. He does the papers after all.
See, I've got a problem here. The first half of your post was, in my view, about autism, how it is viewed, and your learning. The second half was about everydamnbody. And that's the part that drives me nuts. (Not at you --- )
This thing that you said? "They need to be understood, and taught, and encouraged, and treated with respect. They have talents and gifts and can make contributions all their own, as long as we don't force them into our mold. It's called diversity, and it's a GOOD thing."
How the hell is that about the autistic? Why isn't that about everybody? Huh? Huh? And mebbe if we'd all figure out a way for it to be about everybody, then folks who happened to have gotten slapped with the label 'autism' would be just another variant.
Course mebbe that's just me. I still have this residual belief in labeling theory that I didn't know was there. Not to mention that feminism thing going.
Ok, I'll shut up now.
Lasann: Isn't NC the home of the TEACCH program for autism? I've heard good things about that, but I don't know if it's only offered in certain school systems, or what.
Lasann/Sally: I don't understand why more people can't look at the "challenging" behaviors as communications, as indicators of how the kids feel about things. Plus, if it were a NORMAL kid doodling on their paper, what would the reaction be?
Sasha: True 'nuff. It IS about everydamnbody. I mean, "basic human rights don't apply for....that kind of person," has been a problem for as long as there have been people.
But it kills me to see parents trying to chemically castrate their kids, or to give them injections of filtered urine, or to say -- in front of the child -- "I've thought about killing him," or "It would be easier if he had cancer." Parents and a lot of other people seem to think that just because these kids are obviously VERY different, and because a lot of them won't look you in the eye and can't talk, that they have no idea what's going on.
Plus, this is a whole world of injustice that I only recently discovered existed, and I'm feeling rather passionate about it. And, of course, it's also just a swipe at my ex-husband, who is of the "cure them or institutionalize them" school of thought.
Thanks for sharing Ilse. It is certainly a lot to think about.
Oh...and you can make it into The Autism Blog if you want...I'll still read. :)
I'm way late, but chiming in with wholehearted agreement, even though my situation is on a different level than yours.
I'm experiencing frustrations of my own. Since S. appears "normal" and isn't too much of a "problem" and has some atypical behaviors for a Aspergers child, I'm about to do battle to have an assistant (or now that they've pissed me off, a full-blown NCLB-defined paraprofessional) for his teacher to help him meet his IEP goals. I can only imagine what will happen if he is in a classroom on his own with no one there to help him manuever the intricacies of the social network, let alone help him with his ongoing "issues" related to bathroom habits and sensory things. I'd be happy for him to be able to just BE in the classroom, but I also don't want him to be "the weird kids that has poop on his hands and sticks glue on the walls", either. And, I know full-well that there is no way a teacher is going to be able to teach with him asking forty-eleven questions about DNA and acid and to ponder the elasticity of bristles on a paint brush if he is left unchecked. It just galls me when I know damn well that it is something that there are behaviors and potentially embarassing social situations could be easily avoided and, with time, corrected, yet they are acting as if I am asking for a private tutor and a chauffer.
It is so hard. So very, very hard. It's like no one wants to understand ANYTHING. They want to label, classify and then collect the checks that come from serving the "disabled" and move on, status quo. I'm with you--I don't need someone else to decide what "normal" is for S. I didn't ask them for that. He will never be "normal" by any mainstream definition--hell, he's not even close to normal by any definition of Aspergers, Autism or PDD--and that is okay by me. It is what makes him HIM. You are exactly right--there isn't anything that needs to be cured. I'm not worried about finding some miracle pill or some magic beans. I just want him to be happy and have his potential realized. I want him to be able to have the same education that other kids who function at his level are given and to know that he will be able to interact in the classroom in a manner that will be appropriate, positive and meaningful. I want him to be given the tools with which to achieve that education as prescribed by law.
Maybe we need to start one of them there autism blogs.
Post a Comment
<< Home