Autism Every Day

Autism Every Day

Autism Every Day is a 44 minute documentary about eight families with autistic children.

By far its greatest value is in creating sympathy for the parents who have to deal with having such a child, and providing insight into their lives.

It’s an almost unimaginable ordeal, the worst aspects of having a small child multiplied several times over, accompanied by far less of the positives.

Parenthood always means having to deal with things like sleep deprivation, crying and screaming, changing diapers, coaxing kids to eat, delays and disruptions to careers, greater monetary expense, the awareness that being out in public may mean creating a spectacle and disturbing people, and so on.

But with these autistic kids, all those things are taken to a different level:

• One of them can go weeks sleeping no more than an hour a night, meaning someone has to be up with him, watching over him 23-24 hours a day.

• Instead of being the exceptions that have to be specially dealt with, crying and screaming incidents are constant throughout the day, often sustained for long periods.

• Some still aren’t toilet trained several years past when normal kids are.

• Some still can’t feed themselves and aren’t even very cooperative about letting other people feed them, again several years beyond when that’s a problem for normal kids.

• Several parents remark that having a career at all is utterly out of the question.

• Even with whatever insurance and social programs are available, one after another of these parents describes going hopelessly into debt, borrowing heavily from relatives, etc.

• As far as making a spectacle in public, well that’s pretty much automatic.

It’s heartbreaking watching this stuff. Toward the end, some of the parents talk about how on balance of course it’s still a positive, still a blessing to have their son/daughter, that they’ve learned so much, grown so much through this experience, etc., but I’m skeptical.

Not that I can dismiss those claims entirely. I had a wonderful friend who went through horrible health issues in his 20s, including being diagnosed with supposedly terminal cancer, and he insisted he absolutely did not regret it and would not want to relive that time of his life without those elements, due to how much the adversity helped him become a better person and gain a deeper perspective on a lot of things. I certainly don’t think that’s nonsense or that there’s nothing to it.

But, to be honest, I think there’s a little truth to it, but a lot of just saying what you need to say to make the most of a bad situation. When you’re in that position, you want to believe there’s some meaning to it, that in some convoluted way it’s beneficial in the end, so you present it that way to yourself and others.

The reality is it’s a shitty deal, it’s a net negative for your life by a huge margin, and all concerned would have been better off if your kid had never been born. You’re not supposed to say that, but that’s the way it is. I think, anyway. Maybe I’m wrong.

One of the fathers admits through tears that when a concern was raised that his autistic son might wander off and drown in a pond near the property, he had moments where he wished it would happen. He is careful to say it’s because in those moments he’s thinking that it might be better for the kid himself not to have to endure any more of this kind of life, but you have to think it’s also a tempting thought because it frees the parents from what in some ways is a worse ordeal. They’re more aware of what they’re missing, after all. The kid only knows autism; they know that their parenthood experience is a cruel facsimile of what it should be.

I appreciated his opening up like that and risking saying that. In general I respected when the parents were frank about how horrific most of the experience is. Again, not completely dismissing their later claims that overall it’s still great having their kid, etc., but the admissions of difficulty feel real, and the positive thinking stuff feels like positive thinking stuff.

As I say, the film does a fine job making you feel what it’s like to be in these parents’ shoes. However, there are a lot of other relevant things that could be useful in an autism documentary that are only touched on here or are left out entirely.

I’d be curious to see people who did not react as heroically as these folks in the movie who devote their entire being to making the best life they can for these kids. Surely many parents just don’t have it in them to do that, and they give much less care than this because that’s their limit.

Or beyond that, what about the people who throw in the towel entirely and just give up the kids for adoption or for institutionalization or whatever? I admit that’s what I strongly suspect I would do. I wouldn’t want to live the life depicted in this movie. Foster or adoptive parents who are born to do this kind of child care and can do it with love, or people whose profession it is to provide specialized autistic care would give such a child a much, much better life than I would.

I think there are a lot of people for whom that’s true, but they can’t admit that to themselves because they feel an obligation to go through with parenting regardless of the circumstances. To them it would be unthinkable to abandon their child.

I don’t know. I’m sympathetic toward the people who opted out as soon as they realized what they were in for. I can’t judge them harshly. I don’t think they’re horrible, unloving people or anything.

I’d like to have heard from people in that position.

There’s also only very little information offered about what autism even is. There’s an insistence that autistic doesn’t mean retarded, with a tone that it would be an insult to autistics to equate the two. But even if they’re technically different things in terms of brain chemistry and such, would this movie be any different if it were about retarded children instead? Is the ordeal for parents of such children different from what we see here? If so, how?

More than one person describes autism as an “epidemic,” or cites the “1 in 166” kids are autistic figure, but the claims aren’t backed up or critiqued.

My understanding is that that’s largely a myth. The evidence doesn’t support the notion that the actual prevalence of autism has increased dramatically in recent years, but instead that the label is just vastly more common. Many kids who in the past would have been labeled retarded or not been labeled at all are now regarded as autistic, in part for mundane political reasons having to do with admission into expensive special ed programs.

The film doesn’t address the very widespread concerns about industrial pollutants or mercury in vaccine causing autism. (Again, my understanding is that any such connection is highly unlikely).

Research into possible cures or more effective treatment (these parents put enormous time and resources into treatment, with almost no effect) are barely touched on.

So it’s certainly not a film that tries to cover all aspects of the issue. But for what it is, Autism Every Day is fairly well made, engaging, and depressing.

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