A parent’s thoughts on curing autism

14 Sep

Just over 2 1/2 years (and just over 200 posts) ago, I started an autism related blog called 29 Marbles. Writing that blog helped me better understand not only autism, but my thoughts and feelings about autism. As I’ve come to better understand these things, I’ve found that I’m writing less and less. I was considering just stopping, but like Kev I just couldn’t bear the thought. I was very happy to take Kev up on his offer of participating in an autism team blog.

The “c” word – cure – was back in my mind this week thanks to Kristina Chew’s post The Cure Question earlier this week. By way of introduction (for those who don’t know me), I thought it might be good to give you my thoughts on this question.  (This is an update of an earlier post on 29 Marbles.)

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In any discussion about autism, especially with parents of newly diagnosed children or friends/family who have no direct experience with autism, the subjects of cure and prevention will inevitably come up. “Can you fix him?” “What went wrong?” “I’m trying to get pregnant, is there anything I can do to make sure my kid isn’t autistic?”

The answers to these questions depend quite a bit on whom you ask, and also when you ask them. In one of my early posts to 29 Marbles, I wrote the following:

“We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?”

Pose this question to a group of parents of children just diagnosed with autism, and chances are you would get a very quick, passionate, and nearly unanimous response of YES!!! Ask this question to those parents of older children, though, and the responses would likely be more hesitant, not quite as passionate, and definitely not unanimous.

In (R)evolutionary parenting, MOM-NOS describes how her feelings have changed toward her son’s autism over time:

When Bud was initially diagnosed, I viewed autism as “other” – an interloper, a roadblock, an obstacle. I saw it as something to take care of and to get rid of as quickly and as efficiently as possible.

Later, I began to see autism as a part of Bud (and not apart from him). I saw it as a small part, but a significant part.

But as I came to understand Bud better, I learned that his autism is not…one small part of him. It infuses every part of him and it shapes who he is in this world. It makes some things terribly difficult for him. It makes other things laughably easy.

The other key thing we must consider as our kids grow older is that they will develop opinions of their own about their ‘condition’ in life. If you were to present me today with the cure question I asked above, I would be unable to answer. Not because I’m undecided about what I would do, but because I think at this point (15 years old) it is no longer my decision alone to make. Sure, as a parent I would expect to have some input, and would do my best to make sure my son understood the implications of both options.

If you had asked me the question 13 years ago, I would have had to decide. Not knowing then what I know now, I have no doubt that I would have quickly and unreservedly said, “Yes.” But if I had known then what I know now, what would my answer have been?

pregnant pause

In many ways, asking the cure question at the initial diagnosis (assuming it was early enough) is the same as ‘preventing’ autism in the child; if the autism is removed before it has a chance to “infuse every part of him and it shapes who he is in this world,” then the autism will have been prevented from being a defining part of the child. Is prevention a ‘bad’ thing? Again, it depends on whom you ask.

If you are talking about pre-natal testing, the discussion will range from “with this test you can determine if your child will be autistic or not and decide whether or not you want to have him” to “this is the first step to eugenics and wiping out of autistics.” I’m choosing not to engage in this discussion in this post, though I’m sure it will come up in the comments and in later posts.

If, however, you are talking about prevention through a “shot” like I mentioned above (I know, I know, this is not the way it would probably work – please bear with me), how would you answer the question. What factors would you consider?

I can’t help but go back to the questions in my mind that prompted me to write To hear or not to hear. What do I want life for my son to be like? What options do I want him to have? What will he think of my decision when he gets old enough to understand what I have done?

If I had a child who was born deaf and I was told by the doctors that through surgery my child would be able to hear, but the longer I waited the harder it would be for my child to transition from a non-hearing world to a hearing world, I must admit that I wouldn’t hesitate any longer than it took me to figure out how to pay for it. Why should I think any differently about autism?

By saying I would prevent autism at an early age if I could, I’m not saying that I don’t value my child as he is now. I can’t imagine these past 15 years without him (or his autism), and it is safe to say that my career path, my wife’s career path, and my other son’s life would be completely different had we not lived in Autismland all this time. But at the same time, I have no doubt that life without autism would have been just as enjoyable and rewarding, yet filled with the more ‘typical’ challenges that parents of teenage boys experience.

Parenting is hard, mainly because it is a long-term investment of time and effort (and money, of course) with a high degree of uncertainty about the final outcome. The things I do today will have impacts years from now that I could never imagine. I see one of main roles as a parent as the one who sets the path along which my children will begin their journey in life. Along with that, it is my job to help them understand the path they are on, the future paths that lie before them, and an understanding of how to navigate the world.

Or, as MOM-NOS says in (R)evolutionary parenting:

I will try to help him build the foundations that will serve him best [as an autistic person in a largely neurotypical world] – foundations of relationship, flexible thinking, broadband communication, mindfulness. And then, ultimately, I will need to step aside and let him use the things he’s learned.

Or not use them.

My goal, I suppose, is to help Bud have options, to let him know that his life need not be driven by fear and limitations, nor by the prejudices of small-minded people.

Parenting is hard, and every parent approaches the challenge in different ways. I don’t like the way some people parent their children, and I am in awe at how others make it look so easy. This applies to both “typical” parents and autism parents. But it is not my place, nor anyone else’s I believe, to tell another parent how to raise their children. (And no, I don’t believe anyone else should tell me how to be a parent either.)

In the end, parents answer only to themselves (obvious legal/moral exceptions aside) and, when they get older, their children. I’ll leave it to them to judge.

8 Responses to “A parent’s thoughts on curing autism”

  1. mcewen September 14, 2007 at 01:19 #

    Thought provoking. Thank you.
    Best wishes

  2. kristina September 14, 2007 at 03:36 #

    Trying to be a big- or broad- minded parent…..

  3. Casdok September 14, 2007 at 16:38 #

    Yes i think it is something we all work through.
    Thankfully there is no cure so it is not an option.
    Love and acceptance are the best cures!

  4. notmercury September 14, 2007 at 19:19 #

    My goal, I suppose, is to help Bud have options, to let him know that his life need not be driven by fear and limitations, nor by the prejudices of small-minded people.

    And who can argue with that wisdom. Bravo.

  5. Another Voice September 14, 2007 at 22:17 #

    Brett — Thank you for this excellent post. I hope that parents who are new to the autism community stop here, read and reflect. In fact many who have been around for some time would benefit.

  6. bullet September 14, 2007 at 22:30 #

    I want my son to have help with communicating and understanding. I’d like to have help with being more reactive to situations (eg often I can’t let go of something to throw it). Help with these things (which would also help with various other difficulties) would not mean we were cured. A cure is not something I want, since to me that would mean taking away our perspectives, our way of thinking. In much the same way that an NT person can get help for depression, or with organisational skills, or with social skills, or assertiveness training and still be NT, so too can a person on the spectrum get help with understanding, with communicating, with their reactions to various senses (if those reactions are having a negative impact) and with other aspects that they find difficult and still be on the spectrum.

  7. AnneC September 15, 2007 at 04:12 #

    In many ways, asking the cure question at the initial diagnosis (assuming it was early enough) is the same as ‘preventing’ autism in the child; if the autism is removed before it has a chance to “infuse every part of him and it shapes who he is in this world,” then the autism will have been prevented from being a defining part of the child.

    I don’t really agree with this — you’re talking about autism here as if it could potentially be “removable”, rather than as if it is something that affects a person’s perception and development from birth onward.

    What if gender were the subject here?

    It sounds a bit weird to imagine parents thinking in terms of subjecting their infants or toddlers sex-reassignment surgery on the basis that they’ve weighed the social and practical factors carefully, and come to the conclusion that (for instance) their baby girl would be more likely to have the “best possible life” if they made her into a boy.

    I am not a parent, and my own childhood was certainly not the smoothest, easiest thing in the world, but “knowing what I know now” I am incredibly glad that there were no “cure” or “prevention” shots available when I was younger. Not that a person can’t have a wonderful life as a nonautistic — my sister seems to have gotten most of the family NT genes, and she certainly doesn’t wish she were more like me. I don’t wish I were more like her, either, though. I think there’s room in the world for both of us.

    And I would hope that in a world where your hypothetical “prevention” shot existed, parents wouldn’t be legally or socially coerced into giving it to their children.

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