Saturday, July 12, 2014

Busting Anti-Vaccine Myths While Supporting Autistic People

Shannon Des Roches Rosa
www.Squidalicious.com

Yesterday I was given the opportunity to head a "Let's Talk About Autism" discussion for the excellent organization Voices for Vaccines, in order to help vaccine advocates understand how anti-vaccine information can be hurtful to the autistic community, and with the hope that better understanding about autism as part of pro-vaccine messaging will help spread acceptance of autistic people like my son Leo.

If you missed the discussion, which was followed by a Q&A, one option is to listen to the Voices for Vaccines "Let's Talk About Autism" recording. Another is to read the simultaneous conversation on Twitter, which Liz Ditz kindly Storified. Or you could read the below version of the talk I gave, though the live version include some improvisation. This transcript also does not include the Q&A session, though its highlights are covered in Liz's Storify post.

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I’ve been writing about autism at www.Squidalicious.com since 2003, when my son Leo was first diagnosed as autistic. I’m also a founding editor at Thinking Person's Guide to Autism, where we have a very active Facebook community, and a BlogHer contributing editor for parenting kids with special needs. I’ve also written for and worked with a lot of pro-vaccine organizations — Bill and Melinda Gates Foundation, Shot of Prevention, the UN Foundation’ Shot@Life. I even stormed Capital Hill with a bunch of fellow vaccine advocates this past March, to meet with congressional staff on behalf of global vaccine campaigns. SO I’m 100% invested in autism advocacy and vaccine advocacy.

Image description: Selfie of a woman with beige skin,
shortish red hair, wearing reddish-brown lipstick, standing
in front of a black placard with gold lettering that reads
"SENATOR Dianne Feinstein -- California."
But before I get into the standard vaccine-autism myth busting, I want to talk about a critical aspect of vaccine advocacy, which is understanding how vaccine-autism misinformation hurts the amazing people in the autistic communities in general, and people like my wonderful, happy, autistic son specifically. (Recommended reading includes my HuffPo article 10 Things I Wish You Knew About Autism.) If more people understand that autism and autistic people are part of human diversity and nothing to be afraid of -- if we get more messages out there about accepting people like Leo, who need significant support but also have unrecognized abilities and have always been part of our society -- and who, frankly are offended when asked if they think vaccines cause autism not just because the science doesn't support the link but because it dismisses their humanity -- then that's one more reason not to listen to anti-vaccine misinformation.

Image description: Dual selfie of a woman with
beige skin and shortish red hair, and a young
man with curly short brown hair, against a
background of green bushes and large white flowers.
I really want those of us who are not autistic to to remember that autistic people take part in these conversations, read what we write, and — if we are invested in the concept of presuming competence, as we all should be — hear everything we say in their presence. Autistic people are part of our community. Autistic people are not “them.” Autistic people are a part of “us.”

The neurodiverse TPGA editorial team
Image description, left to right (all folks are smiling):
A woman with beige skin and short platinum hair wearing glasses,
A woman with beige skin and short brown hair wearing drop earrings,
A woman with beigh skin and short red hear, wearing brown lipstick,
A woman with beige skin and shoulder-length blonde hair
wearing a gold and black segmented necklace.
So I want to ask you to be careful about how you make your pro-vaccine arguments when autism is involved — because when we use our many many mountains of evidence in statements such as “there is NO evidence linking vaccines to autism” without adding the statement “and fear of autism hurts autistic people,” then we’re actually contributing to negative stereotypes about autism and autistic people, rather than furthering autistic people’s acceptance and inclusion in our society. 

Another reason autism understanding is so important to our work as vaccine advocates has to do with who we want to reach, such as the new parents who are minted every minute — and who are certainly not always in a rational space, as any overwhelmed and sleep deprived person who has parented an infant can assure you. If we can incorporate reality-based messages of autism understanding and acceptance into our advocacy, make them commonplace, then those new parents, too, will ideally have one less irrational fear fueling their vaccine choices for their kids.

Where do we get this information, about understanding, accepting, and respecting autistic people? I think the best resources are autistic people themselves, through organizations like the Autistic Self-Advocacy Network, and Autism Women’s Network. From autistic bloggers like Ido in Autismland, Invisible Strings, Chavisory’s Notebook, and Lynne Soraya — and the group blog We Are Like Your Child. Thinking Person’s Guide to Autism is a nexus for autistic people, parents, & professionals. And then there are parent blogs like mine, Squidalicious (well, I try) and parent blogs that now are joint efforts between parents and their autistic children, like Day Sixty-Seven and Emma’s Hope Book. I’ve gathered up some of these resources on Pinterest, at shannonrosaFTW, and hope you'll read them and find them helpful.

I certainly find these resources invaluable; they have been critical in helping me not just understand but appreciate my son, and move from being one of those credulous “autism warrior” cure-seeking parents to an autism parenting advocate.

And I certainly wasn’t always a pro-vaccine advocate. In fact, after my son Leo was diagnosed with autism, I became staunchly anti-vaccine and stopped vaccinating him. When his younger sister was born in 2004, she received no vaccines. At all. Because I was afraid of autism.

When parents like me fear autism in addition to fearing vaccines, they often retreat even further into denial. It may not even matter if, intellectually, they know better. I used to live in Ghana, West Africa, and I knew university classmates there who were disabled by polio — unlike so many of my American peers, I actually knew what vaccine preventable disease looked like, what it could do. But when my son was diagnosed with autism in 2003, I still went down the rabbit hole of vaccine denialism in order to keep him and his baby sister "safe." Because my classmates with polio? They were still attending college. Whereas the media in 2004 -- even more than the media in 2014 --  portrayed autism as not only likely caused by vaccines, but as the Worst Possible Thing That Could Happen. Those cultural messages of fear and doubt scared the hell out of me, and they sounded like reasonable science at the time. There was no way in hell I was putting my kids at risk.

And that is the message I really want to reiterate across today: I was afraid of autism because I didn’t know any better. I didn’t know any autistic people. I came from outside the disability community, I did not have trusted, vetted sources like Thinking Person’s Guide to Autism or Voices for Vaccines for autism and vaccine information, and I believed what the media told me about autism. Including at the time, that there was a link between vaccines and autism.

It is my hope that, by helping spread understanding about autism, we can erode that fear. That if we treat autistic people like my son with the respect they deserve and do our best to understand that my son lives a full, happy life and is no one’s injury example or cautionary tale, if we help our society realize that autistic people have always been part of society, that autism is a neurological difference, not a disease, that we’ll not only have more acceptance of autism in our society — and as a side effect greater vaccination uptake, and improved public health.

You’re probably wondering what changed my mind, why I am now a vaccine advocate as well as an autism parenting advocate. And I will tell you what people who study denialism and confirmation bias and social networking will tell you — I changed my denialist, hurtful views because of slow and steady exposure to information from trusted resources — and especially from trusted people. It became increasingly difficult for me to rail against vaccines and against autism when the people and resources I most respected were constantly posting information that caused me to question my fear-based opinions on vaccines and autism. And by the time I started writing for BlogHer in early 2009, one of my first posts was My Child Has Autism and I Vaccinate.

Today, five years later, we’re finally seeing daily articles reminding people that there is no link between vaccines and autism. Unfortunately, we’re also seeing outbreaks of vaccine-preventable diseases like measles, which, sadly, are also extremely effective in sending parents scurrying to vaccination clinics. I’d rather people embraced vaccines because they understand why public health and herd immunity are so important and why autism fears are both hurtful and baseless. So when you go out in your community with the goal of being that trusted person who can be relied on for solid information about autism and vaccines, here’s what you need to know, and share:

  1. The Andrew Wakefield-led paper that claimed to discover a link between the MMR vaccine and autism was a lawyer-funded hoax. When the hoax was exposed -- and it was revealed that Wakefield conducted unethical and unnecessary medical tests like lumbar punctures on the kids, falsified the kids’ records to suit his predetermined findings, and had filed a patent for a separate measles vaccine -- the paper was retracted, and Wakefield lost his UK medical license.
  2. Wakefield’s fraudulent study involved only twelve kids. Since then, studies involving millions of children have failed to find a link between vaccines and autism.
  3. Autism is something a child is born with. It is not a post-natal injury; it is not acquired. Autism families are frequently multi-generational, and autistic children often have family members who are "BAPpy," meaning they fit the Broad Autism Phenotype description -- some autistic traits, but not enough for a diagnosis.
  4. There is no autism epidemic. Anyone who tells you differently is using fear to get your attention or your donation. Current evidence points to autism as being underdiagnosed. Autism numbers are increasing because we're getting better at diagnosing and are more aware of the autistic people who have always been here.
  5. Autistic traits tend to emerge around the time children get their toddler vaccines. This may make parents think vaccines caused their child’s autism, but it’s a coincidence, and studies have shown that parents who think their kids regressed after vaccines were mistaken about the timing of vaccines and autistic traits’ emergence, and also often missed early signs of autism that were in place well before toddler vaccines were given.

Some people understand that autism is not something to be scared of, understand that people like my son are just as wildly human as anyone (even though autistic people generally need more support and understanding to function in a world and society that is unfriendly to their needs). But those same people may still have lingering concerns about vaccines themselves. Because maybe they got chickenpox as a kid and have pictures of themselves and their siblings covered in red welts and mugging for the camera, so they think vaccine-preventable diseases really aren't that dangerous. Or maybe they believe that our bodies’ natural immunity is all a kid needs to fight disease. These are terrifying positions, frankly:

  1. Before vaccines, when kids had no choice but to rely on natural immunity, hundreds of thousands of those kids got sick, and many of them died. Yes, some people survived unscathed, but thousands and thousands didn’t. 
  2. Vaccine refusal is a privilege of the vaccinated. Only someone who had never lived through vaccine-preventable disease outbreaks could dismiss vaccines as “dangerous” rather than near-miraculous. In countries where access to vaccines is limited, vaccine preventable-diseases are so rampant that some parents will not hold naming ceremonies until after their babies are vaccinated.
  3. Vaccine-preventable diseases are just a plane ride away. And what do you think is going to happen to an unvaccinated child if they are exposed to a disease they have no “natural” protection against? As is happening more often, now that anti-vaccine “concerns” have led to lower vaccination rates?
  4. When fewer people get vaccinated, herd immunity — the concept that when enough people in a community are vaccinated, diseases can’t find a purchase — is at risk. That means babies too young to be vaccinated are at risk when other people don’t vaccinate, as is anyone who can’t vaccinate or for whom vaccines don’t work. And, conversely, when enough eligible people get vaccinated for diseases like chicken pox, the rate of infection among those who can’t be immunized drops.

Vaccines work. They save lives. They save autistic peoples’ lives, too.

You might sense my frustration over Americans getting to bicker about whether or not to vaccinate their children, when in other parts of the world children who don’t have access to vaccines are still dying from preventable disease — one child death every 20 seconds, in fact. But even here in the United States, unvaccinated kids, and infants too young to be vaccinated are at risk from current measles and pertussis outbreaks.

And Sadly, these outbreaks are a direct result of autism-focused anti-vaccine fear mongering by people like Jenny McCarthy. She might deny responsibility, but the statistics don’t lie — measles was considered eliminated from the United States in 2000, but as of last week the CDC reported more than 500 confirmed cases of measles in 2014 alone. Ms. Carthy's and Andrew Wakefield’s efforts to demolish public confidence in vaccines, using the fear of autism as their battering ram, have jeopardized public health, and set the stage for, the very real illnesses of very real children.

But the great thing about vaccine-preventable disease is that it truly is preventable. And we can return to those days of eliminated measles and rare pertussis if we tool our outreach efforts properly.

Most parents who express concerns about vaccines and autism just need their questions answered, and are easy to reach. If they weren’t, the US rates for the majority of childhood vaccinations wouldn’t be holding at an average of 90 percent. Even so, many parents who need good vaccine and autism information are not necessarily going to participate in discussions like this. New parents may not even know how to find what they need to know, and hard-line vaccine denialists (who are tiny part of the autism parent community, despite their zealous online & political efforts) will just scoff. So what we can do, what we need to do, to is get as much good friend-of-friend-of-friend networked, trusted information out there as we can. We need to aim for herd immunity not just with vaccines themselves, but with vaccine and autism information.

It really doesn’t help to tell scared people that they’re misinformed or wrong about vaccines and autism — negative and confrontational approaches usually make people defensively angry and incapable of listening, and can even cause them to dig deeper into denialism. We need to do our best to spread positive, or at least matter-of-fact messages about autism and vaccines, so that people will listen to us. I always appreciated Dr. Paul Offit’s approach, which, paraphrased, is to say that it’s always okay to ask questions — and fortunately, those questions can be answered.

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Note: Some of the numbered talking points above were modified for my guest post on My Mamihood, Autism and Vaccines.

Wednesday, July 2, 2014

"How Do You Not Have Hate in Your Heart?"

One of our autistic community members, who was frustrated with being treated dismissively by non-autistic people, asked us this question via email. Another of our autistic community members answered the question, with both thoughtfulness and strategic advice. The two then gave us permission to post their exchange.

We hope readers who are not autistic will show respect by listening, learning, and asking questions if appropriate; and that those who are autistic will find (and share) their own strategies and advice.


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Question for autistic people: How do you not have hate in your heart?

I got into a discussion with several people who are not on the spectrum, and was just battered from all sides by ableism, willful ignorance and ad hominem attacks. No one was interested in what I had to say. I was called selfish, stuck up, angry, and expletives I can't repeat here. I was even told by one person that clearly I didn't know how rude I was being "because of my autism."

I have never been an autistic elitist and don't intend to start. But I'm finding it impossible at this point to see any hope for most NTs [non-autistic people]. (There are always exceptions, of course.) It seems pointless to me to bash my head against the walls of their hatefulness. And I've caught myself making snide comments about "normals" and the like, which is just not productive or helpful in any way.

How do you as my fellow autistics remind yourself that there are neurotypicals who understand and care? How do you shrug off the gaslighting and paternalism and accusations? Because I don't want to become that person, but right now it's hard not to give up hope.

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Your question is an excellent one.

I'm not the best advisor on keeping hate out of my heart. I find all strong feelings -- love, hate, sadness, joy -- out of my control. But living a bitter life is also not an option for me, so long ago I decided to focus on what I could do: choose reactions and follow through.

As an autistic I have an aversion to dissembling, but I came to understand that what NTs view as minor deceptions can help me protect myself. Using what most autistics would call lies or half-truths under certain circumstances, distasteful as I find it, has provided me with effective but non-aggressive self-defense, which is always the priority for me. As you pointed out, many NTs behave in an acceptable manner, but when they don't as one didn't with me yesterday, or worse yet when a group of NT gangs up as they did with you, my first consideration is an unobtrusive escape.

There are very few situations in which escape is truly impossible, but depending upon the context and the importance of the relationship, escape can have greater or fewer consequences for you. Clearly a strategy that works well with a stranger or acquaintance will not work with your boss, or roommate, or with a relative on whom you are financially dependent.

I don't know the details of the discussion you described, so I'm going to make a few assumptions. I'm assuming that there were few or no individuals involved whose friendship you particularly value, or have power over your livelihood or your living situation. In these situations, I excuse myself very briefly in a socially acceptable way (to use the bathroom, get a cup of water etc.) just to give myself some escape-planning time and space.

The scripting that comes so naturally to us is an autistic's best friend at these times. Always carry around in your mind, on a piece of paper, or on an electronic device, a few polite but vague stock phrases. You can find some really good ones in etiquette books, such as "This is certainly an interesting topic, but I'm afraid I'm feeling unwell, and must go lie down for a while." NTs may ask a for a detail or two ("Oh do you have. a headache?") but what I have found is that most of them are so caught up in their socializing, they will quickly be too distracted to question you closely. Your mileage may vary, but in my experience NTs have shorter attention spans than ours for anything that does not directly benefit them, particularly by somehow scoring them social points.

The moment you recognize you can extricate yourself from most interactions, you take your power back, which I have found lessens my resentment in both the short run and the long run.

As for resources, I would place the Autistic Self-Advocacy Network at the top of my list, with the understanding that it can't provide you with a magic solution to the problem of finding friends, autistic or non-autistic, who are worthy of your time. What it can do is expose you to such a large number of autistics that you stand a good chance of finding a few with whom you click. Once you've found some autistic friends, ask for introductions to some of their NT friends. That way, the NTs you come into contact with have been vetted to some extent, and are less likely to behave badly. I agree with you that cutting yourself off from NTs is not useful. It's probably not even possible. But using a filtering network of trusted autistics may help.

You may end up with a smaller circle of friends than is considered desirable in NT culture, but is both common and satisfying in autistic culture. The whole world is worthy of neither your respect nor your contempt, but I think that's true for everyone, not just autistics. Knowing whose respect is important to you, and continually deepening mutual respect with those people may help you strike a better balance.

I hope my perspective was helpful.