Monday, February 7, 2011

Parents and Autism Guilt

Over at About.com, Lisa has posted the story of a parent. This parent credits hard work for the success of her child with autism. I don't disagree that parental involvement helps every child, but I also don't believe that parents can help every child with autism become an independent adult.

Let's be bluntly, even brutally, honest with ourselves. I have met parents who did as much as my own parents, from physical therapies to demanding the schools do better to meet my needs. These parents have spared no amount of time or effort to help their children, often sacrificing dual incomes to have one parent at home full-time.

And yet, for all their efforts, there is negligible improvement, beyond what might be expected as an autistic child ages. Yes, improvement, but not enough to live independently or to have the types of social connections the parents envisioned.

You can spend all the time and energy humanly possible on the "recovery" of your autistic child and not achieve the desired result. By contrast, I have met autistic adults who were institutionalized, abused, dumped into foster care, and despite everything these autistic individuals have emerged as engineers, scientists, professors, and generally "successful" adults.

I'm sure that's not what any family wants to read or hear, but sometimes you cannot predict how the environment and nurturing (or lack thereof) of a child will affect development. Sometimes, the parents provide that extra bit of support to help an autistic child become an independent adult.

My parents did more than I could ever repay, especially during the first two or three years of my life. I was born with a severe diagnosis, and it would have been easy for my parents to surrender to the fate doctors declared at birth. At the same time, there was random chance involved in my progress.

My parents, working their entire careers with disabled adults and children, know too well that "miracles" are rare, even in the best of situations.

It's hard to admit fate, luck, or chance has anything to do with life, but that's actually a large part of existence, in my experience. You have to prepare for the opportunities that might come along, but even the best people making the most effort can end up in lousy situations.

There's no doubt my parents influenced my attitudes and choices. It's also inescapable that my wife has provided the support that allows me write each day. Without my wife and parents, I'm not sure what would have happened to me.

Being able to write is fortunate. My injuries at birth could have easily left me unable to write or even comprehend words. It was both bad and good luck, random chance, that produced me. My duty is to make the best of what I am capable of doing. That's what my parents taught me.

You cannot feel guilty about a child's physical limitations. My parents have nothing to do with my paralysis, my brain trauma, or any other physical condition. My family did all they could to help me make the most of my life, despite limitations beyond their control.

If you're a parent, don't dwell on why your child is disabled. Your child needs you to love him or her as-is. Focus on the present and the future. Guilt just weighs you down.

And please, don't pay too much attention to parents implying you don't do enough for your child. Only you know how much you do or don't do. There are human limits of what any parent can do and provide for a child.

7 comments:

  1. Great post. This sums up autism guilt perfectly.

    http://brianautismblog.blogspot.com

    ReplyDelete
  2. Sorry, just had to write more. My son is 3, and is just starting to verbalize. I feel just as proud of him for saying "It's not all gone." as I would be for a game-winning hit. This was pretty affirming.

    http://brianautismblog.blogspot.com

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  3. Guilt is the default for parents of children with autism. Other parents don't help when they claim to have found the cause, the cure, the best treatments, etc.

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  4. Good point. And others don't understand the stuff about what works for one doesn't work for another person necessarily work for us. My mom is stuck on the gluten-free diet; "Why won't you even try it?" She knows of a person it helps. But trying random, helter-skelter things hurts too, right?

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  5. Over my dead body is anyone taking my breads, cookies, cakes, homemade tortillas, or even oatmeal away from me. If your child has an allergy, which a specialist can test, then the diet is important. However, I would be extremely unhappy without junk food.

    GFCF diets have been found to cause bone density loss and other serious health issues. I would only suggest a GFCF diet under the supervision of a doctor. I've broken so many bones that I don't need to do anything that could make such injuring more likely.

    Always check with a physician and understand the potential risks.

    As with many autism treatments, anecdotal evidence outweighs the serious science within advocacy groups. They make other parents feel guilty if the diet doesn't work ("You didn't really follow the diet!") or if the parents listen to a doctor and avoid it due to the potential risks.

    Exercise is good. Dieting? That's just not going to happen.

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  6. am i allowed to blog here? i'm a parent.in my child's case, i know that GFCF diet is true...but parents should make a log of what was eaten and what behaviors or reactions to the food follow afterwards. if they don't see any unusual effect, then they should not continue the diet after observing for a certain period of time.i heard other parents say it is not true, it is not applicable to their child but as for my child, i have seen it... i have read and studied it. i'm a scientist...however, my husband and i decided to weigh what is important to us. for him being able to eat what he wants when he is AT HOME and grow, than not eating at all. i have seen my son eat food that is not gfcf or with vinegar or vanilla any fermentation process... vanilla's got 10%alcohol, which is a by product of fermentation)and he will have uncontrollable silly and laughing spells or crying spells...similar to a drunkard effect. remember though that these behaviors pass, why? the food went into the circulation and passed thru the brain circulation. behavior disappear later on. when he goes to school, i modify recipes of the food that he loves to eat (GFCF and vinegar or vanilla free) and pack it for his lunch, so he can focus more on learning. as for going out to party... we feed him at home and if he wants to eat at the party, we choose what he eats. if he insists on eating something that will elicit behavior, we make sure that by the time behavior comes out...we should be home. he does not cause injury to himself or to others, just crying spells.

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  7. I'm allergic to chlorophyll - badly allergic to green veg. Other than that, not a single allergy found over the years. My last allergy test was 2001 or 02, at U.C. Davis. I don't believe anything unusual was found.

    The scientific literature is fairly complete on GFCF diets. There's some chance of lower bone density, but that's the only risk documented to date. Beyond that, no different to me than if someone wants to be a vegan -- learn to supplement, meet with a dietician, etc.

    Most of my diet is bread, pasta, poultry, and fish -- (and heavy on the chocolates). I do watch the calories though and we try to eat fairly balanced meals. I still end up sneaking vegetables... and get sick, sometimes, but I do love them.

    Single biggest predictor of my moods is exercise. Like so many people, I do best with plenty of exercise. I worry that my students, even those in college, as not active enough. They also eat too much for the little exercise they do get.

    What people eat isn't something I would ever want to regulate or care too much about. Beyond requiring school lunches to be healthier, what someone eats at home is a family matter.

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