Monday, August 11, 2014

A Critical Response to "The Kids Who Beat Autism"

Steven Kapp, M.A.

I critically lectured on autism and “outcomes” like "recovery" for my UCLA Autism and Neurodiversity class the day the New York Times article The Kids Who Beat Autism came out, then saw a related statement I wrote* for the Autistic Self Advocacy Network shared widely later that same day -- so I mulled over how much more attention to give the NYT story. 

I finally decided to write an updated response for my students, focusing on the cited research, including Catherine Lord's critiques of Deborah Fein, my critiques of Lord, and my critiques of the new article. I otherwise sat on the response for days but decided to share it on Facebook as a status update and then, with my friend Amy Sequenzia’s encouragement, as a public Note. Now, following several TPGA editrixes’ well-deserved vacations, I am honored to give the response wider exposure through my first publication on TPGA.

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The New York Times Magazine article The Kids Who Beat Autism abandons pretenses of objective journalism in its headlining confidence that some autistic children “beat” autism. It makes such proclamations despite admissions that the two separate research studies led by Deborah Fein and Catherine Lord that form the basis of this article do not determine what the apparent behavioral change means and that no one knows how to predict “outcomes” of autistic individuals. It also has a biased concept of autism. It discounts the possibility that strengths of individuals who supposedly “beat” autism, such as in robotics and computer programming, may be related to autism. It discounts that continued, if not additional, disabilities in such individuals, such as ADHD and social anxiety are often associated with autism and may be related to how their autism manifests at this stage in their lives.

All families interviewed participated through the Fein article, which was designed for widespread media exposure, with many problems related to its convenience sample (noted by Lord in a commentary for the Simons Foundation). The researchers recruited through media outlets (e.g., newspapers and radio interviews) and clinical reports of children “known” to have “optimal outcomes.” The study did not require rigorous or uniform early diagnosis, and we know community practices vary greatly in type and quality; maybe the children were misdiagnosed (e.g., simply had a developmental delay). The clinicians making assessments knew into which category participants were classified, and parents’ report of their child’s behavior from many years earlier is subject to biases. That study of course further reveals its biases in labeling autistic children who apparently blend in as “optimal outcomes.” Thus the publicity from this later article puts further pressure on youth to keep up an act that may drain energy and cognitive resources that could go toward better use as coping skills, and as Lord notes, autistics may be particularly susceptible to the pressure of “getting to perfect.”

Individuals paraded as “optimal outcomes” demonstrate the dangers of pursuing normalization even within an article that spins and sensationalizes “beating” autism. One such individual admits that suppressing his harmless, natural expression of “excitement” through hand-flapping was “frustrating” for years -- “It was like smiling and then someone telling you that you shouldn’t smile, that smiling was wrong. Remembering to put my hands in my pockets made me less excited because I had to think about it so much.” Is his learned “habit” of suppressing the “urge” (his words) to flap -- this pathologization of unguarded happiness -- “optimal”? Another former participant from the flawed Fein study reveals his internalized ableism in denying that he flaps his hands when, again, feeling genuine excitement. That he only expresses his excitement in this way when by himself reveals denial and shame that may result from a lifetime of having his natural ways of being ingrained in him as wrong. The declaration of such “outcomes” as “optimal” encourages misguided values that lead families to take extreme measures at great emotional and financial costs, with all too many examples of such in the article.

The article led by Lord, meanwhile, had stronger methodology and she is more careful with discussing the results and the implications of this area of research in both the article and the media, but it is not without problems. That study followed up on children diagnosed at age two by her research team, so the longitudinal research by the main author of the autism field’s most recommended diagnostic instruments offers a more systematic approach. Eight participants no longer seemed to meet diagnostic criteria for ASD by age 19 even though six of them met criteria at the previous assessment at age nine and another had other diagnoses. Lord has noted as part of her work on revising the diagnosis of autism in the DSM-5 that the criteria work best for young children (five-to-eight-year-old white boys). She also agreed in the article and in personal communication (November 2, 2012 at luncheon for UCLA’s Center for Autism Research and Treatment, or CART, lecture on developmental pathways in autism) that these young adults she describes as “very positive outcomes” may struggle more and exhibit more apparent ASD later, for example after graduating from college, an institution that provides structure and allows students to tailor programs to their interests. I noted that an autism specialist had offered to remove my ASD diagnosis when I was an undergraduate, but with the increased demands and less supportive environment of graduate school, I have become more stressed and my autism has become more obvious. The support that I continue to receive related to my autism diagnosis has been invaluable to my personal and career growth.

Autistic people, and our families, deserve better than this irresponsible, appalling article. The struggles of print media and various unchecked opinions regarding autism do not justify accounts of autism that perpetuate problems like quiet hands and warrior parenting. We should aim to help equip autistic people with practical coping skills that build on their strengths and mitigate, compensate for, or accommodate challenges -- from a place of acceptance rather than stigma, fear, and desperation.

*Ari Ne'eman wrote the most popularly shared part, the paragraph without citations.

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.