Saturday, September 7, 2013

Autism infighting

One of the first items on my to-do list after Soren received an autism diagnosis was to find a support group. I knew I needed support and answers and a place to be myself--right away, as I felt I might as well have my breakdowns with others over coffee. And our city has a lot of support groups. I found some local groups, found a parent mentor, and did a lot of reaching out online with other parents and virtual communities. But something never really felt right; none of these places felt like a true home. And I was left (and still am) very lonely as an autism parent.

You'd think it would be easy to find community and gain support and advice as you walk this journey, and especially as you begin it.  After you settle in to the autism parenting "community" (quotes intended), you'll begin to see that it's not so easy. There's so much disagreement about the right way to address autism in your child, and sometimes your biggest doubters and foes will be your fellow autism parents.

You have:

  • ABA therapy and those opposed
  • Floortime therapy and those opposed
  • Pro-vaccine and vaccines-injured-my-child camps
  • Biomedical solutions and those opposed
  • Drug solutions for symptoms and those opposed
  • The gluten-free, casein-free diet adherents and its questioners
  • Those who want a cure or recovery and those who think that's offensive
  • Those who view autism as neurodiversity and those who don't
  • Those who seek to extinguish autism's socially awkward tics and those who don't
  • Those who view autism as a tragedy and those who don't

You'd be surprised by how antagonistic these camps can be. It is infighting. Don't even begin to look at autism parenting blogs; it's incredible how much vitriol you'll find in the comments and how discouraged you'll be, still with no answers and no community.

I feel more alone now in my autism parenting journey than I did when I first started out.

The bottom line is that there is no known cause of autism, and there are no known cures (which by itself is a hot button). There are million different ways to approach treatment and therapies. And because this whole diagnosis is shrouded in murkiness, with no easy answers, parents tend to get defensive about the choices they make. You can't do everything (for time and money reasons), so you choose. And you defend. And you question others, maybe because you're not really sure yourself. It's not like cancer or diabetes or even PTSD, where, with few exceptions, you know your path to cure or treatment and can commune with others on this path.

I don't need to explain how this is just another kick to the dirt for autism parents, who are already bewildered and desperate for answers. But mostly they are desperate for community, for others to walk this path with them.

The upshot for me is that I don't share too much (on this blog or in person) about what our therapy choices are, especially what we've chosen NOT to do and why, and I don't ask others for advice. I've learned that this is a very solitary journey that our family is on, as we try to make a path that feels right and is consistent with our very personal views about parenthood and childhood and autism.

This idea of loneliness in this autism parenting journey is hitting me harder lately. I'm a rule-follower. I'm a consensus-builder. I'm a team player. I'm an empathizer. But I don't feel at home in this parenting community. There's too much comparison and too much defensiveness (myself included, of course) and too much evangelizing. At the root is this incredible self-doubt: Am I doing enough for my child? What if your path is better?

Oh how I wish there was a way to come together knowing that we do have this commonality. But boy it would take some great courage, and maybe we're all just tapped out in that department.


  1. Jenny,

    Thank you so much for writing this blog. Thank you for sharing of yourself and this journey.

    I'm always a bit anxious about relating my own parenting experience for fear of coming across like I can possibly get how big this is...and yet I'm always struck by how much similarity there is between your stories and much of what I experience as a parent.

    Lately, I've come to relate this to being the first fully post-Freudian generation of parents. And mostly, this has left me stuck in this place where I feel like I'm paying (in both tangible and intangible ways) for whatever we're doing right now and trying to put a little away for whatever we're going to have to do to make up for whatever we're doing now...often this takes the form of deep prayer and readying myself for the time when my son is fully in charge of his own life, looking back, and ready and needing my apology.

    Huh. See why I get anxious about relating? Kinda turns into my own blog post...sorry about that.

    All of this to say is that I love and support both you and your family. I think of you often. I miss you and many, many folks at church (besides me!) long to know how we can be the family and community that can love you well.

    - Amy

  2. I think you are quite smart to keep some stuff private. I actually decided not to write a blog at all because of all the autism infighting :-(
    I've always been a writer and once I took some time to process my son's diagnosis, I found I really wanted to write about it and a blog felt like the right format to capture the day to day details of our life. I wrote a few private close entries for a few friends, but eventually I stopped even that. I just saw lines being drawn everywhere, angry words said, and decided I couldn't put myself out there for that. If something big came down on my head, I just didn't feel like I could have the energy to do that and take care of my family and myself.
    This is just my round about way of saying I really appreciate and enjoy your blog. Thank you for sharing your journey with us in a way that feels right to you.

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  4. Yes. This. What you said. I wish I could argue and say something like, "No, no, you'll totally find your community eventually." But it hasn't happened for me either. I have a small group of really loyal friends, but they're not a part of the ASD community and they would have been loyal to me and my kids no matter what.



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