Saturday, July 22, 2006

Autism Every Day

[Note: this is the second post today.]
This is my response to the movie "Autism Every Day", at Autism Speaks(I hate that name, because it's run by NTs, so it's not autistics speaking).
First they show a number of clips of kids having meltdowns. That's a bad sign. I've met many autistic kids, and only seen meltdowns twice. It is by far a typical way for autistics to behave. But kids having meltdowns look miserable and hard to cope with, and that's the image I think they want to portray of autism. Miserable children who are hard for parents to cope with.
Oh, and at the end of all these clips of meltdowns, the picture of the last kid goes still and the word "autism" appears. The implication seems to be that this is autism. But it is only one facet, just as toddler tantrums are only one facet of NT toddlerhood, or teenagers claiming their parents are ruining their life is only one facet of NT teenhood.
They have a parent describing what a burden her daughter is, while holding her daughter, who seems to really want her mother's attention. If that girl, like many autistics, is understanding much of what is said around her, how will this litany of ways in which she's burdensome affect her?

"Everything about Daniel's life that seems normal for a typical kid, like going out for dinner, or going to a park, all that, for us, is work."

So says one mother, while trying to stop her son satimming with one hand. One thing I don't like is how this movie so far has shown no sign of analyzing why the children are in those situations. Rather, they just use it as a "look how awful autism is" pity-producing thing. With regards to that quote, I say three things.
Firstly, it's work to do that with NTs, too. I've babysat my brother, eight years younger. I had to make sure he had something to do, so he wouldn't get bored, or he'd start doing annoying things. His only neurological difference is that he's incredibly smart.
Secondly, assuming Daniel is harder to deal with on outings than most people. Why? The answer isn't "autism", it's an interaction of his various traits, some of them more common among autistics, and the environment he's in. Maybe he gets overwhelmed and has a meltdown. Or, judging from how his mom was trying to stop him from stimming, it's possible he either stims more due to overwhelmsion or she's more sensitive to it because of the desire to conform, and so they get into a struggle about whether or not he stims, which could culminate in a meltdown. Maybe he wants to play one way at the park and she insists he play a different way. Maybe he wants his routine and outings form a disruption to that. Maybe he's so excited by being out that he becomes hyperactive, or stims out of excitement (when excited, I jump up and down, squealing and flapping). Maybe he'sa just fine with it, but has no sense of danger, and needs more supervision when he's not in his safety-proofed house. They simply don't say.
Lastly, she phrased it in quite absolute terms. Everything that seems typical is a struggle. There is a known tendency for people to colour an entire experience by a few incidents that stand out mentally. Especially if they are encouraged to view it that way. On Amanda Bagg's blog, she quotes someone who described how the movie was made:

"Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work."

In other words, it was deliberately staged to show the worst stuff. A parent involved in that kind of movie would tend to start thinking the worst about their kid, unless they rebelled. And on a larger level, much of the mainstream autism community encourages the parents to view it in the worst light. I bought some books published by the Saskatchewan Assoiciation for Community Living, stories by parents, siblings and self-advocates. In the parents and siblings ones(few of the self-advocates mentioned their diagnosis), I noticed that most of the descriptions were quite accepting of the individuals for who they were, but a few focused heavily on what they were doing to try to "cure" their child. All of those few were about autistic people.
Oh, they show the five-year getting his diaper changed, as well as a kid being held down to get his teeth brushed. Well, the webmaster of Getting The Truth Out said, regarding a similar film:

"Getting the Word Out has a video of a mother complaining pitifully about her children needing diapers until they were five. She seemed to think this was a horrible thing for her to endure.
I'm in my twenties, I often can't process or respond to bowel or bladder sensations rapidly enough to get to the toilet, and I'm not ashamed or embarrassed by going into the store to buy diapers. That's why they have such a large adult diaper section is because someone needs them."

That kid has the same air of putting up with it that I see in babies and toddlers. It's not a big deal, just a minor nuisance. The same way I feel about using the toilet, in fact. It's a brief interruption of one's activities, but momentarily you can get back to whatever you were doing.
Now, what I think is bad is using that kid, in what should be a private activity involving him and his mother, or whoever is changing him on that occasion, and putting it on TV. Would they tape a typical five year old on the toilet?

"I have to stay home with him, because I have to facilitate the therapist, going here, going there, the medications, the constant medical appointments..."

You don't have to do all that. You could just accept that he's not the kind of child you expected to have, and love him as he is. You don't have to give him therapies and medications and medical appointments. Autism is not life-threatening, or painful. I think the frenzy to cure the child must be incredibly stressful, but then it's blamed on the child's differences.

"I really had to give up my entire life as I knew it."

Firstly, every parent experiences a major change in their lifestyle when they have their first child, and again with any siblings.
Secondly, not every aspect of your life is affected, with any child.
Thirdly, note she said "give up" rather than change. That implies she has no life now. But she does. And if she approached her new life the right way, she could really enjoy herself. It reminds me of how Heller Syndrome is portrayed as "losing a child", but in reality, you've both lost and gained a child.

"Your heart is breaking, all day long."

Sounds like they need counseling. It's not autism that causes that, but being stuck in the despair stage of grieving. They need to work through their lost dreams, and accept thewir child. Then they'll move beyond that.
By the way, one problem I see with the mainstream autism organizations like Autism Speaks (hate that name) is that they encourage parents to get stuck in grief rather than moving on. They portray it as unending misery, and a battle, and all sorts of viewpoints that form a barrier to dealing with grief, and in fact may induce grief in parents who otherwise wouldn't grieve.

To be continued.


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