Susan's Blog

Tuesday, January 16, 2007

Balance in all things

MOM NOS mentioned a resurgence of activity on her blog because of an old post about the film Autism Everyday, which was aired at the Sundance Film Festival. She mentions all the fiery comments she is getting from it, and discusses the issue of difficult comments. Just to be clear, I have no problem with controversial comments. My issue is with personal insults, comments about my person, my body, my face, etc., meant to hurt my feelings. Sure, I can be all Eleanor Roosevelt about things and say that I am not willing to be hurt, but let’s face it, I do get hurt sometimes. We all do.

And yet I have re enabled the comments, with Ned’s help, making it so that you must sign into your blogger account. No anonymous allowed. We’ll see if that does the trick. I doubt it, but MOM NOS is right to point out that a blog can feel lifeless without them. I don’t want to throw the baby out with the bathwater just because one piece of crap was floating in it. Balance, baby, balance.

Similarly, with raising a difficult child, you might feel tempted to see the entire experience as negative, to simply want to fight and destroy, when it is actually far more complex than that. We need to improve our children’s lives, no question. We need to fight for them and break our backs trying to help them learn and function in this world.

But — there is negative that allows you to better take in the positive. There is negative from which we learn and our experience of life deepens. From pain there can be great growth. And so, controversy and pain in our lives teaches us things, makes us think, makes us grow. I speak from experience, as a parent who has been attacked by my autistic child over the years, as a parent who has experienced destruction at his hands, mess, smearing, and then the reactions of others: ridicule, ostracism, expulsion.

But — that is not what my or Nat’s life is about. You can’t say that you hate the experience of food just because you hate the shit that comes from it, excuse my language. You can’t stop baking, cooking, and eating just because — you get my point. I take issue with the Autism Everyday phenomenon, by which I mean emphasizing the difficult and horrible of something in order to gain attention for an otherwise positive cause. Just as I take issue with the nasty, ad hominem blog comment, from which I cannot learn, and which is all about dragging me through the mud. They are not what my blog is about.

I do believe it is positive to want to research autism and figure out how best to ameliorate the difficulties that come with being wired differently. I do wish that Nat had it easier, and that we did, too. If you have a kid who hits you and others, for whatever reason, it makes your life more difficult. That is the truth. But what you do with that, both mentally and outwardly is the bigger point. The problem with Autism Everyday is that the overall message is a negative one, which reaches its nadir by having a mother talk about how she has fantasized about killing herself and her autistic child (going over a bridge with her), so driven is she by this despair. And, she doesn’t kill herself because of her other, neurotypical child. Not for any other reason, such as love for her autistic child. It is as if she has given up on that child. She does not talk about what has worked to make her life easier at other times, she does not talk about educational approaches that have helped her autistic child, or therapy that could help her or her child. She only talks about how bad it is. There is no balance, nothing to learn, no way to see growth. And that is what is wrong with that film, because they are purporting to speak for autism parents.

Despairing is quite normal with any challenge in life. Despairing to the point of wondering about suicide, even. Ugly thoughts are a normal part of the human existence, for anybody. But it is very different to make that into the overall flavor of life with autism. It is heinous to emphasize and legitimize murderous thoughts, implications of a child’s worthlessness, even if it is to raise money or awareness. That is blood money, in my opinion. That is not the way to do it. Honesty is good, going over a bridge is not. We need balance to get at the richness and complexity of life with autism or any other challenge/difference, not histrionics.


So glad to see that Comments have been reactivated! I’ve missed them.

And here, here on everything you’ve said. It horrifies me that you have been personally attacked via anonymous comments. I don’t think I’d have the fortitude to withstand that very well.

— added by Anonymous on Tuesday, January 16, 2007 at 8:58 am

Having not seen the film in question, however, having heard the audio (for some reason I was unable to view the video feed online) I can only speculate that perhaps production editing has had a tremendous effect on the final presentation product, just as it does in everyday media outlets. Let’s face it, sensationalism sells and/or increases viewership. The general public will not respond to the challenges of Autism unless it is presented in the worst possible light. It’s a shock factor with a set desired reaction goal. If this increases public awareness to the needs of those living with Autism to the point of increased private & or government funding for research & services–go for it. Otherwise, I would much rather prefer a view of Autism as presented by yourself, MOM-NOS or Kristina Chew. A full, balanced story that leaves those of us who travel in Autismland together with the reminder that we are not alone. That we can find the greatness & joy in our “normal” everyday lives. That each life is to be cherished & appreciated. That we each have our own gifts to give in this world. Sometimes their just not as obvious to the Neurotypically minded.

— added by Anonymous on Tuesday, January 16, 2007 at 10:22 am

I agree that production can mess up a product, but the woman in Autism Speaks, Allison Tepper Singer, always stands by what she said in the video.

Shock is not the only way to get a message across. I don’t agree that the general public does not respond to things unless presented in “the worst possible light.” Many in the general public respond to subtler, more balanced portrayals, as I can attest to in emails I’ve received about my own writing. Sure, sensationalism sells, but is that right? To use our children in that fashion? I, too, wished to raise awareness of autism, and so I wrote an honest book, which did well enough to go to paperback, brought me to the White House, the Today Show, etc. I say this not to toot my own horn, (although that is fun) but to point out that we have to be careful with what we deem as representational of a group or an issue. Autism Speaks may have helped many, but they have hurt people, as well, particularly autistics who feel they can speak for themselves.

— added by Susan Senator on Tuesday, January 16, 2007 at 11:01 am

I am also glad to see the comments back as well.
I always think when people make personal attacks that it is more about their failings than mine. Unfortunately that knowledge does not prevent my feelings from being hurt.
I have seen the film in question and although it certainly does not present a balanced picture,there were parts of it that resonated with me.
When I am out in a restaurant or a playground and I see how relaxed these families are with their children, I do feel that I wish I did not have to be so “on” and vigilant every minute. This intensity coupled with so many decisions to make without any clear answers on a regular basis does prevent some stumbling blocks to happiness.
However, I can not say I can relate to to the overwhelming despair that seems to be the pervasive theme in this movie.

— added by Anonymous on Tuesday, January 16, 2007 at 11:26 am

ooooooooo, I love the cakes! Love reading your blog! Sincerely, Enna Id

— added by Anonymous on Tuesday, January 16, 2007 at 12:12 pm

Oh good – I thought I must have lost a few brain cells as I thought there was a comments bit and then there wasn’t – decided I’d been popping too many pills.
On the ‘hate’ mail issue – I did experience some, but I think that was my own fault for posting the wrong comment on the wrong site. Other hate mail has been a misunderstanding [a problem if the commenter is anonymous] Other [v.rare] personal attacks I left, as I think they say more about the commenter than me / my children/ my site – they’re sort of condemned by their own ravings.
I couldn’t watch the whole clip either – which qualifies me as prime wimp of the day [if not year]
Cheers dearies

— added by Anonymous on Tuesday, January 16, 2007 at 1:05 pm

Just wanted to clarify…I do not condone the direction this film took. Just like meeting one child with an ASD, the viewers now have only meet one family living with a child on the Spectrum. I meant to state that in general, the public, not withstanding those whose lives are touched in some way by ASD, will not respond with as much passion unless the material presented to them is so compelling to motivate them to think and/or take action. I believe the viewpoint represented in this production was chosen for such purpose versus a much more balanced viewpoint, simply to sway, distort & direct the general non-ASD public perception. I completely agree that a more balanced, varied, & realistic viewpoint would better have represented a fair & accurate portrayal of life with Autism.

— added by Anonymous on Tuesday, January 16, 2007 at 1:57 pm

Shit happens. You live your life with as much grace and dignity as you can muster, revel in the victories, however small they are (Sam helping me pick out his younger brother’s Christmas present by POINTING!), you vent where you need to, you try not to unleash a ton of negativity on the world, and you stay in balance that way.

If you have something to share that may help another person, share in the appropriate place. One’s own blog is a good place for sharing. I have to figure out myself sometimes, is what I have to share something that should be going out to all my twin mommy friends? Or just the ones who are on the “special needs” mailing list? (To which group should the “child losing all functional language while sick” go?)

Maybe the litmus test for what to say and what not to say is, Does it show respect for all the other people involved? Saying something hurtful in response to an honest statement shows no respect. Discussing killing your own child and yourself IN FRONT OF THAT CHILD shows no respect for that child. (That’s my biggest beef with that part of that video, the child in question was in the room, in earshot.) Giving a constructive piece of advice in a gentle manner shows respect for the other people involved. Saying “I don’t know what to say, except to send you a virtual hug” shows respect for the other party. Prefacing advice with “This is what worked for me/my kids/my family BUT it may not work for you and you know yourself/your kids/your family better than I do, so use youre best judgement before applying my advice” shows respect, and a certain amount of humility. (And I learned to do that from someone else, a mom I deeply respect because she shows a great deal of respect for everyone she encounters.)

— added by Julia on Tuesday, January 16, 2007 at 4:39 pm

I’m glad we can comment again!

— added by Anonymous on Friday, January 19, 2007 at 3:22 am

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