A Dispatch from the Autism Wars (Part 2): An Interview across the DMZ
The following is an interview with Kim Wombles, co-creator of the recently founded Autism Blogs Directory. On the surface it might seem like there should be a chasm between the two of us, since Kim advocates for Autism acceptance and I have spent the last several years trying to recover my son. Yet, we find the distance between us shorter than the common ground that defines our lives. Some say the twine shall never meet, but here we are. As this interview reveals, these categories are not always as hardened as they may seem. This is an Autism sythesis dialogue.
AMR: Hi Kim. Can you please tell our readers about yourself and your connection to Autism?
Kim Wombles: That's a harder question, isn't it, than you would think it would be? I've described myself elsewhere as "an adjunct instructor of psychology and English at a community college in Texas. She is a mother to three wonderful children on the spectrum, and wife to a pretty swell guy. In her spare time, she writes several blogs, some of which are snarky, some of which are sweet, and some of which are science-based. Occasionally, all three combine in one place. You can find her atwww.scientificblogging.com/science_autism_spectrum_disordersfor the science-based snark free stuff."
I think that's fairly accurate, all in all. My oldest will be 21 this year; he has autism and also had a stroke at nine. He's a sweetheart of a young man and has come a long way from the head-banging, barely verbal, non-potty-trained, and physically aggressive little (and then not-so-little) boy he was. Oh, such a very long way! He's absolutely verbal and can go on for hours about his obsessions. He's also no longer physically aggressive nor does he engage in self-injurious behavior and he potty trained well more than a decade ago! There is hope! :-) After his stroke, I home-schooled my son until he turned 19. He now attends a day center for the disabled and volunteers at an animal shelter one day a week. My daughters are also on the spectrum but don't have an accompanying intellectual disability. They are my vibrant garden girlies (both are named after flowers). Half my life has been spent being a mother to three delightful, often difficult and always interesting children.
AMR: I am delighted to hear your children are thriving. No doubt your positive outlook and dedication have much to do with that. From your websites I see that you are a member of theNeurodiversity Movement. And, you also advocate for the recognition of common ground between the Neurodiversity and theBiomedical/Treatment camps. This is definitely the road less traveled from either direction, perhaps because it is not easy. Has this been your perspective from the start or is it an understanding that has evolved over time?
Kim Wombles:
I think my group position depends on who is doing the defining of neurodiversity, and then of course what we mean by movement. Kathleen and I set up Respect for Infinite Diversity last year because we wanted a site where people who were in need of support and assistance could go, and to declare what we mean by neurodiversity, since so many people are defining it pejoratively as a do-nothing approach. To Kathleen and me, believing in neurodiversity is recognizing that we are all different, that we all have different strengths and weaknesses, and that regardless of disability, everyone is entitled to respect. We think all human life has value and that people should not be shunted to the side, treated badly or neglected because of a disability. Sure doesn't sound like do-nothing, does it?
And the truth is that Kathleen and I both believe in appropriate medical interventions for children and individuals with disabilities. We've never decried parents working their physicians to come up with the best possible treatment plans to lessen their children's difficulties or issues. What we're against is using our children as guinea pigs and subjecting them to dangerous, untested, unproven, or even worse disproven treatments. And even then, well, we can understand a person's desire to do anything to help her child. It's one of the reasons I work so hard with my students to give them the critical thinking skills to evaluate claims so that they can make informed decisions about their purchases, about their health care choices.
I don't know that I see the desire to find common ground as the road less traveled, either. In the real world, you can surround yourself with people who are seeking to make the world a better place for your children. Maybe it's a small group; maybe it's a larger group, depending on the situation.
I firmly believe that the divide that exists online between "biomed" and "neurodiversity" is a false dichotomy that those on the extremes use. And they do it by redefining what the other side is about. Biomed becomes awful, all about the very worst woo, and neurodiversity become do-nothings, and they hammer away at each other through the use of straw men. It's pointless and isn't even based on reality.
When my son was younger, we used medication for him based on the guidance of his psychiatrists. When he had a stroke at nine, he went off all medication to treat behavioral symptoms and I home schooled him. We did the GFCF diet for four years. We use omega-3. We use a multivitamin. These seem to me to be biomedical interventions.
My oldest is going to be 21 in December. All of this, this stuff on the Internet, these divides, they didn't exist in 1993 and 1994 when we began to get the assistance my son needed. The whole vaccine thing? Not even a blip. All the "treatments" like secretin, enzymes, and various protocols: not there. Autism as mercury poisoning: not there. There was no divide because there was in essence no community, not a lot of us around to get together, and autism was not yet big business.
My husband and I were told my son would never live independently and that the best we could hope for was a group home. We were offered medicine for some of his more difficult behaviors, educational intervention, speech, PT, OT, sensory integration therapy, and therapy for the family in order to work out the best way to help him. And we went home, trying to figure it all out, how to get him to quit screaming, how to sleep, how to stay dressed, how to get him potty trained. My life already revolved around him since his needs were so time-intensive, and the various labels he went through didn't change that.
There wasn't really an Internet with lots of information and misinformation. There weren't a lot of folks selling cures, either. It wasn't hopeless, though. It was what it was. And I think that was easier. I had to pour through books; I had to drag my son to the library to find what I could in the research literature. And I had the time with him to figure out how to help him, how to reach him, and that was through interaction, not through creams, pills, etc.
Even after the Internet really got going, I didn't have time to go looking. It wasn't until I was working on my master's in psychology and doing a paper on the culture of autism that I started looking at the Internet to see what was out there, how autistics were connecting with each other. It also wasn't until students would bring up the vaccine question in classes when they heard I had children on the spectrum that I began to look into that. It wasn't relevant to my everyday life which was completely absorbed in my three children and working hours each day with them to help them develop the ability to make eye contact, to understand directions and questions and that (1) they were supposed to listen and understand the demand, and (2) comply by responding with the appropriate answer.
I honestly didn't have time for any of the online community until two years ago when my son began to attend the day center full time and my daughters began to attend school. All of a sudden, the up-to-sixteen hours a day spent working with my children was empty. Sure, I was teaching part time, but that's nine hours a week. Picture having your life which had been constantly, non-stop filled with three special needs children who were all of a sudden off doing their own thing for eight hours a day! And so, online I went. Unfortunately, the first place I went was Huffington Post and to the autism-related posts. Well, it was into the fire, and having read all the studies that had been done first before seeing how people online were dealing with each other, well, I guess I was shocked. I know I was fired up. I'd recently finished my master's, having split my focus between chronic pain and adaptive coping and Autism Spectrum Disorders. I'd been immersed in the research literature, not in celebrities' books or online forums.
In the real world, it never occurred to me to be on one team or another (hadn't heard of the terms neurodiversity or biomed until about three years ago); we were at home with the kids, not part of the school systems and not part of support groups. We had our extended family. It never occurred to me to not focus on common ground issues of making the world a better place and helping our children. In fact, last year Kathleen and I started working on that at the same time I started Countering on my own to combat misinformation. We began with three other online friends a Raising Autism forum, but we all facebook friended each other, so that went dormant, but now we've got a group of friends on facebook that stretch these supposed divides and we support each other and when there is a crisis, like with Zakh Price earlier this year, we work together to help raise awareness.
The directory is a natural extension of that: one place where people can go to find a spectrum of blogs, to find community.
AMR: It is hard to imagine a time when these communities and groups did not exist in their current forms. And just imagine Kim, a few short years before Autism found you parents had to scroll through microfiche in university libraries to find any information on Autism at all.
Can you tell our readers about the Autism Blogs Directory? What is the objective there?
Kim Wombles: Oh, I'm old enough; it was through fiche! I love the online databases connected to university libraries now, which allow me to pull a wealth of peer-reviewed research at any time. The trick is in making more of this research freely available to the public; part of what I do at Countering and over at my blog at Science 2.0 is to look at some of the research and provide an overview of it.
The Autism Blogs Directory was borne out of a desire to have an inclusive directory of blogs relating to autism and disabilities so that folks looking for a variety of viewpoints in one place could access that. The hub was restrictive and didn't add blogs very often; when it went down in May, Kathleen and I realized we could create the directory and work at adding blogs that focused on what was important to us: community building and building support networks, as well as making sure a diversity of voices was represented. Hah, who would think that diversity means just that? :-)
AMR: Exactly. Honoring diversity is not only about respecting those of different races, religions, levels of ability or disability - it is also about respecting diversity of thought and opinion.
I am very excited about the Autism Blogs Directory. The way I see it there are about three issues on which our entire community is in basic agreement: Non-Use of harmful restraints and seclusion measures in schools, ending insurance discrimination against Autistic persons, and some issues regarding education. It bothers me that there exists no platform where we can come together and advocate in one voice on those issues, while leaving each other alone about the rest. The Harmful Restraints and Seclusion Act may come up for vote in the U.S. Senate as early as late this month. If our entire community cannot come together and speak as one to make it illegal for schools to duct tape our children to chairs or lock them dark closets for hours then our community has bigger problems than we think. That's why I think collaborative efforts like you Autism Blogs Directory are so important. It represents a platform where we can come together and honor the common ground on which our families stand and plan ways to advocate together for our children.
Kim Wombles:
Thanks. I think you're right. I'd like to believe that most folks are moderates. They want to help their children, they want to be supportive of others going through similar challenges, and they want to make the world a better place. I think the extremists on each end of the spectrum of our community also want those same things; they just have radically different ideas about how to get there. I think a few select individuals on these ends are so busy trying to wipe the other side out, engaged in right-fighting, that they begin to control the apparent online discourse.
We need to step up where we can and avoid the extremism. We need to work on these issues that we really should be in agreement in and agree to let live. Christians and atheists work together; democrats and republicans do as well, on other issues in which those group allegiances are irrelevant to the tasks at hand. I know we can do this, too, because we are doing it in the real world, on our blogs with each other, on facebook, in friendships that are formed online and in the real world. We can do it because there are things more important than being right, being victorious over another person.
Besides, hammering away at the other "side" isn't doing anything constructive. Constructive criticism, contemplative dialogue, rational discourse, all these are far more effective ways of trying to engage those who are on the other side of a philosophical construct.
AMR: You once said that you believe parents, whether neurodiversity or biomed, want basically the same things for their children and that a lot of times it is the matter of semantics that makes us seem all that different. Could you please elaborate on that?
Kim Wombles: Some parents say they would wipe the autism out if they could. Other parents object to that, and the reason isn't because they don't want the same thing; it's because one set of parents has defined autism as every negative behavior, every medical issue, everything difficult or painful for the child or for dealing with the child. You see, if everyone were using the same definition, the same construct, there probably wouldn't be near the arguments or hard feelings there are.
Not everyone defines autism that way. Not everyone says all the bad stuff, all the negative, that's the autism. The other side, the side that's horrified that someone would want to wipe autism out has put other things in the autism box: positive attributes, strengths, unique talents, the awesome things are kids do, along with the hard things, the difficult things. We hear cure autism and we've got a different box; curing autism would take the good and the difficult.
The side that only has bad in the autism box takes that outrage and thinks it means we'd do nothing at all.
What we need to do is recognize we have different autism boxes and be specific.
Side A would work to see self-injurious behaviors eliminated. So would side B.
Side A would work to remove intellectual disabilities. So would side B.
Side A would work to remove social deficits and communication barriers. So would side B.
Side A doesn't want their children to suffer from epilepsy, gastrointestinal issues, and other issues. Neither does side B.
So, we really do want the same things: healthy, happy, and successful lives for our children with the goal for independence. What parent if offered a magic pill that would remove all the difficulties, the deficits while leaving in place all that is wonderful, all that is strong, and all that is unique in their child wouldn't snap at that chance?
You see, semantics matter. Scientists operationalize definitions so that other scientists will know exactly what they are talking about. Pedanticism matters in science. Precision, making sure everyone is talking about the same thing, that's the way to understanding, to knowledge.
We don't do that in the online autism community. We don't. We use common words, but it's readily apparent to me that people aren't using the terms in the same way. If they took the time to ask the other person to define the term as he's using it, they could make sure they are talking about the same thing. Lots of arguments could be avoided if we just realized we were defining things differently.
AMR: I think you are right about people not using the terms in the same way. Here is an example from my own experience. In the past I've gotten in snits with a few neurodiversity folks on mutual friend's Facebook walls (sounds so tacky to hear myself say it, but we all have weak moments, I suppose.) When they'd tell me my son's GI problems and seizures were comorbids and not part of his Autism I'd get livid. At age seven, within weeks of his seizures being identified and treated with anti convulsants and biofeedbackhe went from being functionally non-verbal to speaking in sentences. He also began elaborate pretend play sequences and asked me to join him, which is something he'd never done. So here we have a child who when full brain Petite Mal seizures are addressed has major improvements on two core Autism symptoms as defined by the DSM: communication impairments and lack of pretend play. So to me this abnormal electrical activity is not a comorbid, but rather how HIS autism manifests. These neurodiversity folks were STILL acknowledging that my son is sick and needs to be medically treated though. They just use the word comorbid to describe the problem. If I pull myself back from the emotional aspects, why should I NEED and REQUIRE them to use the exact same wording that I prefer. That's kind of dictatorial expectation, when you think about it.
Kim, is their anything else you'd like to share with our readers before we close?
Kim Wombles: It's that autism box, again, isn't it, and how folks are defining things? I have chronic GI issues that I've dealt with most my life; I know first hand how it can alter one's behavior and how when the pain lifts, one is better able to function. I can understand the contention of comorbidity based on how researchers define autism, but I also can understand how, because those more debilitating behaviors are reduced when the GI issues are dealt with, parents of children with GI issues would place those issues in their autism box.
It can be so hard to see things from another person's perspective. Researchers discuss theory of mind impairments and lack of empathy as core deficits in autism, but if we look around at neurotypicals, you see failures of TOM and empathy all around us, often from ourselves, if we are willing to admit it. I teach my students that no one holds a position he believes to be wrong, and that the default setting for all of us is that we're right, and you think differently, you must be wrong.
The key to getting past apparent divides, not just in the autism community, but in real life situations, is to engage your theory of mind and your empathy, to stop short that need to be right at the expense of the other being wrong. It isn't natural and it isn't easy, but in order to feel empathy, you have to be able to see it from other people's perspective. If you can get there, you can't ever dismiss them so blithely again. You have connected with their emotions and you can't help but hurt when they hurt. Or to use jargon, your mirror neurons fire in tandem.
My children and I work hard together for them to engage those thinking skills, to make automatic processes of placing themselves in another person's position. It is a large part of our work together. What people miss (including many researchers and clinicians) is that individuals on the spectrum have empathy, an abundance of it. What they lack, often times, is an awareness of the situation. You have to see it to feel it. Once they see it, they ache for people in distress and feel it at the depth of their being.
We, as a society, could learn a lot from our children, from autistic adults, about how they see the world. If we want to help them, we need to collectively engage our theory of mind and our empathy, not just for those on the spectrum, but for all people. We need to find our way to compassion. When you get there, the need to be right at another person's expense lessens tremendously. You may still think people are factually incorrect, but you'll be able to resonate with how they got there.
Autism Mom Rising: Thank you so much for this dialogue Kim. Hopefully it is the start of many to come.
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Kim Wombles' Bio:
The blogs I am most proud of are the Autism Blogs Directory andRespect for Infinite Diversity, blogs I corun with Kathleen. My personal blog is Detritus. I won't list all my blogs, as there are probably a dozen out there, from class blogs for teaching aspects of critical thinking, to blogs for my fiction, to blogs for my flower photos. I think my most fun blog, though, for me, is Lady Bug Butts. My main blog, though, and where I counter misinformation, where I go over autism research, over pseudoscientific treatments, and where I am most contemplative is Countering; it's also most likely to offend individuals who might use some of those treatments, though.
I can be reached at kwombles@gmail.com; if you have a blog that's not on our directory, I hope you'll send me the link so I can add it.
To read Kim's "An Artificial Divide: A Look Back" click here.
Autism Mom Rising's Bio:
I am mother to an 8 year old with moderate Autism, Landau Kleffner Variant, and full brain multi-focal seizures. I can be found at http://autismmomrising.blogspot.com/ or contacted atautismmomrising@yahoo.com
To read part 1 in my A Dispatch From the Autism Wars Series clickhere.
