Speaking with Women Autism Advocates about the Measles Outbreak, Damaging Rhetoric, and Neurodiversity
Part One — An Interview with Shannon des Roches Rosa
Legendary Women, Inc. was able to speak with two outspoken bloggers and activists about the way people were discussing the measles outbreak, the misinformation of the anti-vaccine movement, and the demonization of the autistic community in the middle. In part one, we spoke with Squidalicious writer and The Thinking Person’s Guide to Autism co-founder, Shannon de Roches Rosa. In a few days, we’ll be posting part two of this piece with Sara Kurchak.
1) You’re very open about how you started out as an anti-vaxxer as well. How much time and research did it take to change your opinion?
It took me a while to shake off my anti-vaccine stance. My son was diagnosed with autism during the early 2000s, and during that era parents like me were much more likely to find persuasive cure-based misinformation about autism rather than legitimate information for helping our kids. Plus the media kept flogging autism-vaccine myths despite flimsy evidence. So it took a few years for science-minded family and friends (online and off) to coax me back to accepting the reality that vaccines have nothing to do with autism. My son and I also participated in a research study on autism and regression at the UC MIND institute. When the researchers reviewed our family videos, it became evident that my son’s autism was always there — but his autistic traits became noticeable in early toddlerhood, which is the same time that many childhood vaccines are given.
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2) Why do you think it’s so easy sometimes to be swept up in the rhetoric and often the “cure-all” claims of people trying to sell services or theories like the “vaccines cause autism” to parents?
I think it’s because American culture conditions parents to expect kids without disabilities, even though that’s not realistic given that autism, and disability in general, are and have always been common. (Though the way we label various disabilities, including autism, has changed over time.)
So parents who don’t get that “perfect” kid they expected often want to “fix” their kids. And it’s hard to convince parents new to autism that autistic kids need understanding and specific supports, rather than fixing — especially when an entire industry of autism pseudoscience purveyors is just waiting to bilk parents out of their money by promising the impossible: turning an autistic kid into a non-autistic kid.
I also think people mistake coincidence for causation — as I know from personal experience, the emergence of autism traits coincides with the timing of many childhood vaccines. And some people just can’t help seeing a correlation, especially if they’ve been exposed to vaccine-autism causation misinformation. It’s worth noting that parent reports of vaccine-induced autism did not really exist before the media started covering the topic.
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3) You make the comment: Don’t just say: “Vaccines don’t cause autism.” What should be said instead?
Please say this instead: “Autistic people have always been here. Vaccines don’t cause autism”
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4) In one of your recent pieces on your blog, “Vaccines Advocates: Don’t Discriminate Against My Autistic Son,” you commented on how there’s been a temptation in with the anti-vaxxer crowd to erroneously talk about autism as a potential consequence for vaccinations, almost like “boogeyman” of what could happen to kids if parents don’t avoid vaccines. Why do you think people to sometimes use misinformation to paint being autistic as something to be feared?
I think most people don’t realize how hurtful it is to autistic people (and those who love them) to essentially invoke autism as a terrible vaccine risk factor that’s thankfully been ruled out. Honestly, I wouldn’t expect someone from outside the autism communities to have that kind of intuitive compassion, because media coverage of autism tends to be alarmist and negative. That’s why I wrote the Squidalicious post, to ask people to consider the possible unintended consequences of their pro-vaccine messaging.
One of the article’s FB commenters suggested an improved phrasing: “vaccines have nothing to do with autism.” That’s what I try to use now.
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5) How do you think we can work toward helping the public at large understand that autism is a different way of thinking and reframing the current discussions to work toward neurodiversity acceptance?
We can start by busting the myth that neurodiversity is all about autistic people who are just “a little bit quirky,” and who speak over or ignore autistic people like my son who need full-time support. When in fact neurodiversity advocates include autistic people of all abilities and want improved quality of life for autistic people of all abilities, including better understanding and accommodation for autistic ways of being like stimming, and finding direct eye contact uncomfortable. I have learned so much about understanding and supporting my son through other autistic people, yet the media loves to play up a manufactured “parents versus autistic adults” divide.
I’d like to see more sharing and promotion of perspectives by autistic people of all abilities who support neurodiversity.
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6) Can you tell us a bit about your Facebook group, “The Thinking Person’s Guide to Autism.” What was the journey to starting it?
We started Thinking Person’s Guide to Autism in 2010, as a sort of “just add water” toolkit to help people fast-forward through the confusion and flailing that often occurs when autism enters a person’s life. We wanted to help people learn from our mistakes — as parents, as professionals, as autistic people — rather than repeat them. And we wanted to create a community where autistic people, parents, and professionals could come together and have learning conversations.
Initially we put a lot of energy into publishing material on our website, and also into publishing our book, but now we (me and my co-editors Carol Greenburg and Jennifer Byde Myers) focus on sharing curated autism information through social media — primarily Facebook but also using Twitter.
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7) What are some of your goals in the coming next few years for you and for your son?
I’m sure he’s going to surprise me with his own goals and abilities now that he’s a teenager, given that autistic skill development tends to be lifelong and does not follow the same trajectory as non-autistic people! My own goal is to help him develop better functional communication. It doesn’t matter to me whether better communication reveals my son to be a hidden genius, or a person with intellectual disability who nevertheless has a bigger say in what happens to him. I just want him to have all the opportunities he deserves.
