Walking Into the Mine Field

Friends – this is likely going to get ugly, but I can’t stop thinking about it, and so I need to go there. I started penning this last night, and to be fair, after 4-hours I threw in the towel. Autism, by nature of being a spectrum, is filled with strong, powerful, divergent viewpoints. No matter what, by choosing to share any viewpoint, you’re going to tick someone off – even if done respectfully or delicately. While the Red Couch is mostly my place to share the joys and challenges we face as a family living with autism, I’m steering into unchartered water a bit because I’m feeling conflicted and uncomfortable and this is where I come to spew. So, I’m throwing caution to the wind and choosing to walk into the minefield. Here we go . . .

Let me set the stage – I’ve had a crap week. Elliott is struggling in middle school – something is up (likely multiple things including puberty, but I digress), and I hate it when I know something is up, but we can’t put our finger on what it is or help him figure it out. Ugh! The second time Elliott called me from school yesterday, he opened our conversation with “Did Ms. K. call you yet today?” Maybe it’s just me, but that sparked my suspicion that he was not able to turn his day around following his morning call after being ousted from Science class. Indeed, she did call me a short time later, which led to a brief face to face where I just fell apart.

To be sure, I didn’t do the positive, ready-to-take-action, collaborative autism Mom community any favors showing up with puffy eyes from crying, not having washed my hair in two days, totally stressed from almost no sleep stemming from worry about said middle schooler, and wearing my ugliest Mom jeans (the only ones that fit) from self-medicating on Peanut Butter M&M’s. Clearly, yesterday I was representing that small, but interesting faction of slightly-off-center-kind-of-whacked out Autism Moms. But at least I remembered to bring chocolate with me – as a general rule, whenever summoned to a teacher meeting, I find it wise to bring some sort of peace offering. That said, I was so scattered and emotional during our discussion that a) her concern has now likely shifted from my kid to my own mental health and b) perhaps the Prozac needs to get bumped up – at least temporarily.

So – here’s where we’re at: I’m going on almost no sleep, my hair is still not clean, I’ve given up jeans entirely for yoga pants, and I’m an emotional wreck still trying to figure out how best to help my middle school kid, while still having a bit of time for his siblings who have their own challenges. Now, add some discord (even more than normal) from the autism community, and voila – I’m a conflicted mess.

Why am I so conflicted? In an effort to save time, first read this November 11th statement from Autism Speaks Founder, Suzanne Wright (linked here): http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action. And then read John Elder Robison’s resignation letter to Autism Speaks (linked here): http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

I’ve been a Volunteer with Autism Speaks for the past 7 years. I have not always agreed with everything they do, but I believe in much of what they stand for. Most of all, serving as a parent volunteer has always felt like a positive way for me to have a focus outside of my home, while still making some small difference for my kids, our family, and our community – that’s important to me. And, let’s be real, it’s nice to share a glass of wine with people who really “get” your life after a committee meeting.

As for Suzanne Wright’s essay – it didn’t work for me. While I get that it hopefully came from a place of compassion and love for her grandson who is severely impacted by autism, it did not fairly represent the “spectrum” of autism, and I think that was a mistake. More and more, it feels like there is a divide forming within the greater autism community between severely impacted/less impacted groups (some say high-functioning/low-functioning), and while this issue is much larger than just Autism Speaks, it is hurting all of us. Suzanne Wright’s words only made that divide grow. Worse, I don’t think using words such as “tragedy” or “burden” help build community or necessarily compel people to take action. They just freak people out – and hurt others. Plus – she forgot that autism does not just affect children. A substantial chunk of that 3 million number is the 5 and over crowd.

For me, John Elder Robison was a dot of glue that sort of held these two camps together within Autism Speaks. He is an adult with Asperger’s, an articulate author/speaker, and someone who truly “gets” neuro-diversity, while at the same time realizing that the way autism impacts his life is very different for individuals who are challenged in almost every way (and everything in between, of course). Autism is not all lollipops and roses and good news stories of tremendous obstacles overcome. He summarizes it perfectly here:

“The point here is that there are many ways autistic people can choose to live their (our) lives and all are valid and deserving of respect. Some people want a little help, while others face major challenges. They (and their families) feel great anger and frustration over society’s weak response to their cries for help. As a progressive society I argue that it is our duty to develop ways to meet the very diverse range of needs our community has.”

I was deeply saddened by his resignation, because it signaled to me that the divide is growing, and that this is no longer just fringe/extreme groups bickering amongst themselves. The mainstream autism community (if there is such a thing) is now engaging in the ugliness, and that saddens me.

More than that, as a parent with 2 of my 3 children on the autism spectrum, I’m confused. Ada, while definitely squarely on the spectrum, is really hanging in there. Her strengths and challenges, while uniquely her own, are very different than her brother’s – her challenges are far fewer. Elliott is a conundrum. He doesn’t fit neatly into either camp. I feel like if the spectrum were a long balance beam, he would be covering the middle 1/3 of it complete with giant flips and dramatic dismounts – venturing now and then to the extreme ends for a visit. The big feelings that people are sharing from both the more impacted/less impacted camps both resonate with me. I’ve read some articulate, passionate, heart-felt points of view from both sides and maybe it’s just all hippyish of me, but I wish we could find ways to support one another more. I think Suzanne Wright’s speech did the opposite of that, and John Elder’s departure from the organization signals to me that the community may become even more polarized.

The autism community is as varied as the spectrum itself, and is filled with people with a variety of viewpoints. Given the vastness of the spectrum and the divergence of personalities involved, we’re never going to be a community of sunshine and rainbows – I get that.

Not everyone has to like Autism Speaks, or support everything they do or say, but I would argue that trying to make positive changes about what’s not working is a better choice for the overall autism community than vilifying them. Do I wish they would consider asking someone on the autism spectrum to join their board of directors? Yes. Do I like getting emails with subject lines that read “Where will your child with autism live when they age out?” No. I’m not a fan of the shock and awe strategy – especially when I think about parents with newly diagnosed preschoolers getting something like that, and how that would have made me feel. But I have shared, and will continue to share with the organization when I feel strongly about something. And I will continue to volunteer my time in hopes of making a difference – if only in my little tiny corner of the world.

My friend, Heather, put it best yesterday when she said “We are all individuals, doing our best. We have to be there for each other”. I think she’s right. I’m sad John Elder left, and I can only hope that his departure will bring about some needed change at Autism Speaks. But at the end of the day, I hope that we can find some common ground as a community. There is so much to be done – we really do need one another. And we can choose to disagree respectfully as well – best done over a glass of wine, don’t you think?

Whew – I’m done. I spewed, I rambled, I let it all out. It felt kind of icky in my brain, and now it doesn’t seem so bad. Thanks for hanging in there with me – I wouldn’t have blamed you for leaving to get a Salty Caramel Mocha. Maybe I will now too. After all, things are starting to look up, even if just a tiny bit. I’ve received no calls from Elliott at school today (knocking on wood) and here is an email that I received this morning from my pal, Mr. Elliott T. Kramer – “Hi It’s nice to see you Love you man”

Love you back, man!

4 responses to “Walking Into the Mine Field

  1. Well said Kammy. People fail to see a child’s uniqueness because they focus on the characteristics of autism. We encourage non autistic children to be individuals and be unique but children on the autism spectrum are labeled and treated as if they are all the same.

  2. Heidi Adams shares your writing with me (we are friends from Montessori in Omaha although now I live in NJ) and I’m glad you wrote about this. My 7th grader is on the high functioning end of the spectrum. I read the op-ed piece when it came out and I was sad, disgusted, and disappointed as I think many were. But I had no idea that John Elder Robinson just resigned. That. Stinks. I know Autism Speaks does good work but I feel like they are running in the wrong direction now. Sigh. Thanks for your blog.

  3. I appreciated some of what the Autism speaks piece said. Finally- someone is trying to help these families. I also appreciate what John said as an adult living with ASD. If we lived in a perfect society where people would reach out and help each other than that would be great. The sad fact is that most people don’t. In the last 12 years- the only person that has reached out and helped is my mother(a saint for sure). So I am glad that someone wants to get a national plan to help kids and their families. If we lived in a society where everyone was accepting of everyone else-then that would be perfect. Just not the world we live in. Families need help- families are exhausted-families don’t sleep-go on vacations-go out to dinner- but they do walk on eggshells, try to put out fires etc. Having a child that suffers and wants to be helped and you can’t fix it is the hardest thing to watch. Wondering about a future when you are no longer there is hard to stomach. The autism community needs to quit nitpicking each other and support each other instead of turning against each other. By the way- I love my child more than life itself and have given up my life for him.

  4. Thanks so much for your post. My experience with my 17 year old is that high school really was transformative in a good way. Hang in there. You sound like an awesome Mom, slightly whacked or not!

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