Susan's Blog

Tuesday, April 11, 2006

Enough With the Tragic Autism, Already

Here is a letter to the editor that appeared in the New York Times regarding the article about siblings. I was blown away by this letter and I thought you all should read the article and then the letter.

Why Not Ask Us?

To the Editor:

Re “Siblings of Disabled Have Their Own Troubles” (April 4): It’s often been said that “less bad” doesn’t necessarily equal “good.” Such can be said about your article on siblings of those with developmental disabilities.

I am autistic. I have “typically developing” siblings. And I have news for you: all y’all aren’t that easy to live with, either. Neurotypicals are loud, impulsive, manipulative, too easily embarrassed and unpredictable. They have friends who are loud, impulsive, manipulative, too easily embarrassed, mean to us and unpredictable. M\ny an autistic child has been bullied by a group that includes his or her own brother or sister (who often claims not to be related).

But no one ever asks us. Maybe it’s time to start, instead of assuming we don’t have thoughts and feelings, and should be grateful just to have families that put up with us, at least sort of.

Maybe next time, someone should ask us. It’s time that people with disabilities had equal time in the “griping about siblings nationally” arena.

Kassiane A. Sibley
Missoula, Mont.

It is time for a new paradigm for autism. There is far too much unconscious bigotry, whereby we assume that the person with the disability is someone to be pitied, fixed, or rejected. Or the family with autism is the lowest on the totem pole of misery. But how do you measure such a thing?

Who can compare their misery to mine and come up with an accurate equation?

Some people assume that my life is so much harder than theirs because Nat happens to have autism. People tell me, “I don’t know how you do it,” and although I know they are expressing admiration and perhaps friendship, there is an element of separateness in the comment, and a lack of understanding of who I am and who Nat is. I shrug off what they say, and they assume I am being modest. I am not. I am just being me. Nat is just my kid. My family is just a family. Autism is a part of the family, but not its defining characteristic. I think that being a family of geeky males and one ultra femme female is more defining. Or, a Jewish family. Or a New England family. A family that likes witty jokes. A family that makes great birthday cakes, or who loves Cape Cod. But even those only scratch the surface.

Autism is not our tragedy. Nor is it my other sons’ tragedy. The tragedy is how easy it is for others to gloss over who we all really are and to see us by one label. The tragedy would be if Max and Ben (or Nat) were somehow stunted or wounded by events in their childhood or dysfunctional family dynamics. So Ned and I are doing everything we can to make things work in our family, where everyone is equal and has rights and feelings.

In a sense, Marx had it right: From each according to his abilities, to each according to his needs. In a family, this is probably the best way to operate. As my Grandma would say (may she rest in peace): “Genuck Shoen [enough] with the autism is a tragedy, already! He’s a beautiful boy, they’re all beautiful!”

11 comments

Susan,
Thanks for this good post. Kassiane, the author of the letter you quoted, has a blog that can be found at http://rettdevil.blogspot.com/ I “met” her and some other very interesting and articulate Spectrum women on a Yahoo list I frequent. The chorus of voices from within/around/outside the swirl of Autistic influence is growing rapidly! Makes my head spin sometimes, as the messages often conflict. But my insight as a parent is deepening exponentially, and I can’t help but think ( hope?)my parenting benefits from the increased understanding, and thus my incredible Spectrum child does as well.

— added by Melinda on Tuesday, April 11, 2006 at 5:41 pm

Hmmm, I have to mull this one over for a bit. I have to admit that I think our life IS a little bit harder because of our daughter’s autism…not worse…just harder on a day to day (sometimes minute to minute)basis. I have to admit I feel ashamed even writing that after this eloquent post. I am sorry, but most days are a challenge for her and for us. Maybe I just have a-ways to go.

— added by Elaine on Tuesday, April 11, 2006 at 6:21 pm

Interesting. I think most people mean well. Recently, when I told my mother how blessed I feel to have a son with autism, her response was “Well we wish you didn’t have to deal with it.” I was surprised that I almost felt offended, though I’m certain that wasn’t her intent. I don’t ‘deal’ with it, he’s my kid and I adore him, warts and all, just as I enjoy my other son, who does not have autism.

I really enjoy your blog!

— added by Michele on Tuesday, April 11, 2006 at 8:33 pm

Enough with the autism is a tragedy already. I love Yiddishisms.

Thank you for this. Kassiane is right. The siblings aren’t perfect martyrs. They don’t all torment the disabled, kid, but it sure is common.

You have no idea what kind of kid you would have had if he had been “switched at birth” or if you could “take away” the autism. You have no idea if you would like that kid, or if he would get cancer at age 2 or if he would drown at age 6 or get a girl pregnant at age 15.

There are no guarantees, but parents look at the kid they got and imagine that they were in fact cheated out of a better kid.

There was a great letter to the NYT a year or more ago, where the mom said she had 2 boys, one was autistic. She had to put up with one that had to be alone in his room all the time and refused to hug, never talked to her, hated school… his brother isn’t that way at all, he loves school, gives hugs, etc. and he’s the autistic one.

You probably remember it. Anyway, she was making a cute story out of the fact that her normal son was a teenager and a pain and her autistic son was a joy.

My ASD child has been through horrific (for me, especially) surgeries and was the ideal patient. S/he’s really the ideal offspring in many ways, very serious problems notwithstanding. I love the mostly NT kid, too, but I wouldn’t call him/her “ideal”, just really good normal.

I’m the most abnormal of my siblings, but I’m the one who will take care of my mom when she needs lots of care, most likely. My very, very weird ex-husband was the child of my ex-mother-in-law who took care of her as she was dying. He moved in with her and took care of her, really well from what I heard. He’s probably the oddest/most ASD of all his siblings, too, though there are some contenders among his siblings.

— added by Camille on Tuesday, April 11, 2006 at 8:52 pm

“Enough already!” That would be a perfect byline, don’t you think, for this movement to change the way we think about all people with a disability or a difference.

Wonderful post.

— added by Estee Klar-Wolfond on Tuesday, April 11, 2006 at 10:03 pm

I want to feel the way you describe, that we are not low on the misery totem pole. I have to say, though, my teenager with autism is in a phase where more than anything, he wants a girlfriend. He is sad about this and spends large amounts of time obsessing about it; and because he is so concrete, he thinks if he follows some prescribed steps, he will be able to have this girlfriend. In fact he thinks I should be able to make this happen for him, the way I have made so many things happen for him. I tell him it is not so simple, in fact very complicated, and that one day I believe it will happen for him. But my heart is breaking. After all these years I have not figured out how to deal with these things without feeling that somebody is poking a fresh wound. Do I just need better meds for myself? Do others manage to feel OK even when their kids are not?
p.s. I have also struggled with the high-functioning/not-so-high functioning thing and remember reading that the higher functioning kids are in some ways less fortunate because they are aware of their differences and of their isolation. I do feel sometimes that I would be less despairing if my son cared less about wanting to “be like a normal teenager” (his words).

— added by Anonymous on Tuesday, April 11, 2006 at 11:15 pm

Yes, I agree. I’ve had lots of friends say to me “I don’t know how you do it” regarding driving my son all around to all of his different therapies. But I don’t think like that, I guess. I mean, what choice do I have? Would anyone NOT do all they could for their child?

I’m also tired of Autism being linked to the word tragic. I’m tired of the “sad eyes” that I get from the doctors, family, friends and total strangers.

Lately I’ve been telling people that my son is “Awesomally Autistic”….it really catches people off-guard to hear those two words put together. šŸ™‚

— added by Mary-Ellen on Wednesday, April 12, 2006 at 7:08 am

I’m a big fan of your blog, just wanted to share this article I found today about John Travolta’s son’s alleged autism… http://www.hollywoodinterrupted.com/

— added by Anonymous on Wednesday, April 12, 2006 at 9:27 am

Bravo, Kassi, for writing the NYT, and bravo, Susan, for blogging about it.

— Phil, who wants an “Enough, already!” t-shirt

— added by Phil Schwarz on Thursday, April 13, 2006 at 12:32 am

What do you mean Marx was right ‘in a sense?’ Marx was right full stop in my opinion!

— added by rocobley on Thursday, April 13, 2006 at 7:04 am

Hi, I’m 17 years old……pretty much autistic myself…..with an extremely low social interaction, I don’t mix with people, infact I don’t think a big deal about friends at all, none of them know that I’m autistic as I have never told them that, infact, most of them think that I’m shy or introverted….. the only persons who I truly love are my parents and my sister who have helped me a lot……I have a fear of the unknown and I’m quite clingy as well, esp. with my mom, most of the time. I’m engrossed in my own fantasy world, that’s how I communicate with myself…..I’m not comfortable with change either, I mean, I don’t turm violent but mentally I feel quite twitchy…….I’m so socially impaired that I’m dreading the prospect of going to college and meeting new people……but otherwise I feel normal, infact I do quite well at school. Austism is not a problem, it’s the people’s perception that makes it a bigger problem than it is.

— added by Pixie on Monday, June 19, 2006 at 10:44 am

%d bloggers like this: