Curing vs. Accepting: Does A Child Have To Be "Normal" To Be Happy Or Successful?
Does A Child Have To Be "Normal" To Be Happy Or Successful?
Posted Jun 06, 2008
Parenting is often an exercise in balance - a balance of encouragement and correction, protection and freedom, acceptance and challenge, teaching and learning. All parents have to find the right balance of these things to properly nurture their children and equip them to live successfully in the world...but when it comes to parents of children with autism, finding that balance can be especially difficult. Where is the line?
There's no question that parents of autistic children have a great deal of challenges to surmount. Having a child with special needs, such as autism, puts unique demands on parents' lives, marriages. Parents can put great pressure on themselves to "fix" their children.
As highlighted in New York Magazine's recent article, "The New Wave of Autism Rights Activists" - opinions vary widely as to what extent parents should chase the ideal of having a normal child. What's realistic, or right for the child? How do you find the balance between helping the child function, and accepting their limitations? What's the endgame? Is the only acceptable outcome a completely "normal" child, or can it be an individual who is still autistic, but happy and fulfilled?
Blogger Camille Clark (Autism Diva) is quoted in the article as saying, "A loving parent wouldn't expect a kid with no hands to practically kill himself trying to master the piano, and parents of autistic kids shouldn't expect that their kid is ever going to be ‘normal.' Period."
Recently I chanced on a showing of the autism documentary "Beautiful Son." This documentary follows a couple in their quest to "cure" their son of autism. While I believe the parents were sincere in wanting to help their son - there as an undercurrent to the entire film that troubled me. Somewhere around the middle of the film, the parents take their child to the beach, and the child is shown happily swimming away ("like a fish," the father says). Over this idyllic scene, the father's voice is overdubbed talking about how, though he enjoys these times at the beach, it makes him sad because it makes him dream about what it would be like to have a "normal" child.
I find myself wondering what that does to a child - to receive the consistent message that they are somehow "less than," not as desirable, simply by virtue of having autism.
Where is the balance between wanting to help your child, and sending the message that they are "broken," "sick," and "unacceptable" unless they are "normal?" Will we wind up with a generation of kids, traumatized by their inability to please their parents by being, or pretending to be, "cured?"
The documentary "Autism: The Musical " showed some parents' similar struggles with what autism means, and what it means to support their child. One sequence shows clips from old home movies in which a mother tapes her child, saying in the background, "That's what AUTISTIC children do," absolutely aghast at this prospect. Openly, she talks about her struggles accepting that her child has autism.
It's clear she is torn between her natural response and her need to support her child. She's also quoted saying, "I don't want her to think there's anything wrong with herself - 'cause there's not. I mean, she's different, but she's not wrong...and it's hurtful because most people don't feel this way, y'know. And I didn't either in the beginning and...um, she's taught it to me though, I mean it's not that I've, y'know, seen the light and I've sort of... Living with her has had a profound effect on what I've become." This was one of my most favorite lines in the film - but then, I read the follow up interview.
In this interview posted on the movie's web site, she says, "We saw Elaine [the leader of the Miracle Project and organizer of the titular musical] recently, and she was talking about how these children are God's blessing and how they're miracles. And I was like, 'No they're not. They have disabilities, and they're f*d up, and it's a big pain in the ass and a big drag.' We love them, but I just can't go there. I think that's probably my version of the truth. I love Lexi with all my heart and soul, but if it could be different, I'd make it different without even thinking about it. And that's hard to live with. But, it's not going to serve anybody to sugarcoat it. It's tough. And it's sad. But what am I going to say? With luck, when she's older we'll get her set up with a situation that she finds fulfilling and that she's empowered by."
Having seen the documentary, I can understand some of her feelings and fears. Her child, Lexi, speaks almost exclusively echolalically (repeating what other people say, but not generating her own speech). One of the more wrenching moments in the documentary is an interview with Lexi's father, in which he talks about his deep fears of what will become of his daughter after they are gone. She's innocent, naive, and unable to communicate. She could be victimized, and not be able to communicate what happened. That's terrifying for a parent - for anyone who cares. Yet, how does it affect her to have her mother call her f*d up? That she'd change who her daughter is without even thinking twice? How much of these attitudes does an autistic child absorb?
As quoted by New York magazine, Lenny Schafer, of the Schafer Autism Report, dismisses of neurodiversity advocates: "It's a handful of noisy people who get a lot of media attention but do not represent a broad swath of the autism community. Best for them to be ignored. They want to redefine autism as something nice that Einstein and Bill Gates had. They're trivializing what autism really is. It's like stealing money from the tin cup of a blind man when you say that it's not an illness."
Another parent, Mark Blaxill, is quoted as asking,"What kind of person would need to attack parents trying to help their kids?" and questions whether those who advocate neurodiversity are actually autistic at all.
I think it's deeply sad that there is such a disconnect between parents of children with autism, and the growing community of adults with autism who simply want to be accepted - an acceptance that would benefit the children of the parents who so vilify them. In the end, the aims are largely the same - we want children with autism to grow up to live healthy, happy, and fulfilling lives. To be contributing members of society.
The difference is only the method by which each group feels it can be accomplished. Those that advocate a cure, believe that the way to accomplish this is to eliminate the autism. That only by appearing or being "normal" will the child be happy and successful. Many of us who've lived to with our condition all of our lives, have learned that it's not necessarily required to be "normal" to be happy. With the proper supports, we learn to adapt - and find that there are unexpected benefits that come along with the challenges. It's the rejection that's objected to, not the parents, and to some extent, not event the treatments - provided they are not dangerous, and are aimed at minimizing troublesome symptoms, but not eliminating who they are.
This point is made in Jim Sinclair's "Don't Mourn for Us:" - "It is not possible to separate the autism from the person. Therefore, when parents say, ‘I wish my child did not have autism,' what they're really saying is, ‘I wish the autistic child I have did not exist and I had a different (non-autistic) child instead.' Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces."
Neurodiversity advocates cite examples such as Einstein and Bill Gates, not to trivialize autism, but to give examples of hope. To stimulate new thought, and new paradigms as to what a person with autism can be. To challenge the stereotypes and presuppositions about what a person with autism is like. It's no crime to focus on the positive. To view the glass has half full, instead of half empty. Recognizing the positive does not minimize or ignore the absolutely real struggles of those on the spectrum.
I may be able to speak normally at most times, but I also know what it's like to completely lose speech under stress. It's not a far stretch to imagine what it would be like to live like that full time. I may not bite under duress, but many times I have to tamp down my violently defensive reaction to high pitched noises, crowded situations, and the wrong type of touch. It's all a question of degree. People like Mr. Blaxill may struggle comparing a fairly independent person with Asperger's to those on the lower end of the spectrum - but we can see (and feel) the similarities.
As a teenager, a forward thinking theater teacher of mine took a young man with autism under her wing, capitalizing on his love of theater to draw him out of his shell, and help him to learn to socialize (much as she and others did for me). I still remember the moment he walked into the classroom. The door swung open, and in walked this tall, handsome, strawberry blond young man in a black leather jacket. His face looked severe and impassive, he rarely spoke, and he walked with a vaguely robotic gait. I backed away. I was afraid. The word "autism" was so monolithic and frightening - I was afraid to get close. I was too afraid to get close enough to realize how much I had in common with this misunderstood young man. That is what the stigma will do. (Who knows what would have happened had I known about Asperger's then.)
Is this what we really want for the next generation? Can we find that balance, that middle ground, that will allow these children to get the support they need, without the undercurrent of rejection? Can we find a way to challenge these children to rise to greater heights, while still appreciating their singular uniqueness?
That is my fondest hope.