Wednesday, March 6, 2013

My evolving relationship with autism

“The child may have a disorder or a set of problems, but he is not the disorder. 
He is a human being with real feelings, real desires, and real wishes.”
Stanley Greenspan, Engaging Autism

I'm involved with a monthly support group for parents (in reality just moms) of kids who are significantly impacted by autism. It's a great place to vent, cry, and share the moments that are too embarrassing, gross, shameful, and sad for us to share with general friends and family.

What I've learned these last few times at the group is this: I'm doing OK. Our family's doing OK. And that's not the case for the parents of newly diagnosed parents in the group. They frequently use words like "nightmare" to describe their situation. They talk about "progress" and even "cures," and recite the lists of therapies, both proven and experimental (and sometimes dangerous), that they are trying. And I totally get it. This is not the parenting we expected. And, especially at first, we fight this diagnosis.

But autism is not a nightmare to me right now. And that means I've evolved on this journey.

The first step for us upon Soren's diagnosis, two years ago, was shock, of course. Well, that's not exactly true. We suspected this, but we held out a little hope that our intuition was wrong. It's just that having an expert say that word--"autism"--makes you forget to breathe for a minute while you rewrite pages of expectations and hopes and assumptions about how your family life will look.

Grief sets in, but it's coupled with this weird panic to Get My Child In Therapy Right Away, since the biggest impact therapy can have is early therapy, or at least that's the current message in the media. Hurry! The window is closing! Soren was already 3.5 years old when he was diagnosed, and I already felt late.

So we scrambled to line up therapies, to get on waiting lists, to get more evaluations, to fill out paperwork. We fretted about how many hours of therapy and school we needed to give our boy, and we struggled with how many hours the experts recommended (20 to 40 hours?? For a 3-year-old??) We signed up for occupational therapy/Floortime, speech therapy, psychotherapy, ABA therapy (with both a consultant and an in-home aide), and a developmental preschool. We started researching "the diet"--a very common diet that eliminates gluten and casein and has anecdotal success with reducing some problematic behaviors and improving communication among autistic kids.

We were desperate for "progress," "improvement," and dare I say, "a cure."

And there's now.

I'm not sure when it happened, but I find myself leaning in to this autism diagnosis and all the unknowns it brings. I sit with the possibility that no real breakthroughs will appear, that Soren will not speak, that he'll continue to exhibit autistic behaviors. And I mourn, but it's a mourning for my nonexistent plans and expectations about parenting, not (usually) for my child. I have a degree of acceptance, and I love the child that IS rather than loving the child that we thought we had (or had hoped he would become after all the therapies). Now I do not expect or work for a cure in Soren.

I think this evolution in my relationship to autism is a benefit to Soren. When we talk about "curing" or "defeating" autism (which is prevalent in the autism-parenting community), there's an inherent message that it's the child that is deficient. He's Less Than he could be/we want him to be, and Only When he is cured will everything be OK.

Don't get me wrong. I hate many of the ways that autism makes life difficult and scary for my son (anxiety, fear, overwhelm, inability to fluently communicate, loss of skills). And I hate how hard this parenting is. But autism is not the enemy; it's part of who my son is, what defines what he's like, at least in part. Hating autism is hating part of my son.

This viewpoint is still evolving for me. There are many days that I would do anything to have my son miraculously cured of all the tough stuff of autism. And oh, to hear his voice would be amazing. But I truly believe that accepting who my son is--RIGHT NOW, with no conditions--is a huge gift that I can give my boy. I never want him to think that he is not quite enough, that there is a huge list of deficits for him to address before he is worthy of our full acceptance. What if he never progresses in his behavior, academics, language--or what if he regresses even more? What if he does continue to develop socially inappropriate behaviors? I am working on accepting whatever comes. But curing, changing, correcting are not going to be my ways of loving my son.

Two recent articles have solidified my view on this topic:
--Kristina Chew's article on whether we need to be curing autism.
--Brenda Rothman's article on how autism is not parenting fail.
Thanks to both of these women for helping me along in this journey.


  1. Jenny, this is the first time I've visited your site and I'm so glad I did! I love this perspective of acceptance that you're developing around your son's diagnosis.

    My son is 22 and was diagnosed with Aspergers and Tourettes. It is difficult to imagine him any different than he is. Sure, I'd love for him to not be so anxious, and to feel more comfortable socially, but he is also intelligent, witty, imaginative, musical, and downright amazing, quirks and all!

    Thank you for sharing your wisdom in such a beautiful way!



  2. Jenny, Congratulations on your journey and welcome to the exclusive club of parents of AMAZING people! I read all the emotions you're going through, and remember them well - so I ask if you could read this post to about those fears and emotions: "Will My Child Miss Out?"

    Wonderful to meet you.

  3. Yup! I wish I could just download/zap your column into some people's brains. Like my in-laws (!), but we all have our own journeys to go on. . .
    I think of my son's autism in these terms.
    1) There are a multitude of outcomes that are possible for this journey. I don't get a crystal ball to let me know what my child's future is going to be. No one does, although a lot of people like to think they do ;-)
    2) I do not let myself get attached to any one outcome, nor do I place judgments on any possible outcomes. This can be hard b/c society places judgments on outcomes, but I don't have to let what society impact how I think about my boy.
    3) I remind myself that today, this moment, is more important than any future outcome. Take things moment by moment, not even day by day. Moment by moment.
    4) There will be good and bad moments (b/c I chose not to think of terms of good and bad days. that way a bad day can always turn around ;-)) Savor the good, try to learn from the bad or just let them go. Then at the END of the day, try to focus on something good that happened. Even if it was only one thing. Even if it is the same thing as yesterday. Just pick something positive to end your day on.

    It's not always easy and I certainly don't feel like I've got life all figured out or I always make the absolute best choice (no one does!), but I do feel like I'm in reasonably good place right now when it comes to accepting my son's autism.
    Truthfully, I feel dealing with other people and their lack of acceptance/understanding of autism is much harder than dealing with my son's autism itself. Although I feel like people on the outside looking in have a hard time understanding that ;-)



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