Wednesday, March 30, 2016

Todd Drezner's Open Letter to Cinema Libre Studio Regarding “Vaxxed”

Todd Drezner
lovinglamppostsmovie.com

Cinema Libre Studio is the film distributor for Loving Lampposts: Living Autistic. And today, I learned they are now distributing "Vaxxed," the film by the discredited scientist Andrew Wakefield, whose fraudulent claim that the MMR vaccine caused autism launched a thousand conspiracy theories. The film was dropped by the Tribeca Film Festival, but unfortunately thanks to Cinema Libre, it is getting new life. The note below is the letter I wrote to Cinema Libre. If you're so inclined, visit their Facebook page and tell them what you think of their decision.

Dear Cinema Libre,

I’m writing to explain why I’m so disappointed in your decision to distribute “Vaxxed.” I have three main objections:

1) Perhaps of most relevance to Cinema Libre is that Andrew Wakefield has assembled his film using unethical and dishonest editing techniques. As documented here, the “Vaxxed” trailer splices excerpts from two different phone calls together and then inserts a narrator giving an interpretation of those calls that is not supported by the facts. And this is merely one example from a brief trailer. Who knows how many misleading edits Wakefield has made in the full film?

Given Cinema Libre’s commitment to the idea that documentaries can make a social impact, I would think you would want to be associated with filmmakers who follow ethical practices and journalistic standards when making documentaries. When a dishonest filmmaker like Wakefield receives distribution and a theatrical release, it undermines all documentary filmmakers. We depend on the trust of our audiences. Your decision to support a dishonest film like “Vaxxed” destroys that trust. Documentary filmmaker Penny Lane outlines these issues nicely here.

2) Cinema Libre’s blog post about “Vaxxed” refers to “the suppression of medical data by a governmental agency that may well be contributing to a significant health crisis.” This is, I’m sorry to say, no more than a fever dream. First, as you will remember from watching "Loving Lampposts,” the autism “epidemic” can be explained by a combination of changing diagnostic criteria, increasing awareness of autism, and the benefits of receiving a diagnosis (in terms of the access to services and support the diagnosis provides).

Secondly, the CDC “whistleblower” around whom the trailer (and I assume the film) revolves did not reveal anything nearly as sinister as the trailer suggests. It is true that William Thompson of the CDC revealed to Dr. Brian Hooker that a 2004 study of the possible link between the MMR vaccine and autism supposedly found an association between the vaccine and autism in African American males.

Before I say anything about that finding, let’s note what that finding rules out: any association between the MMR vaccine and any other group besides African American males. Even if Thompson’s assertion were true (it’s not), it still doesn’t support the idea that the MMR vaccine causes autism in the many people who are not African American males.

But what about the supposed link between the vaccine and African American males? It’s nothing. Basically, the original study of the association between the vaccine and autism did not leave out African Americans on purpose. Rather, it did so to eliminate “confounders” — that is, any factor other than the vaccine that could have been associated with autism. The authors of the study wanted to be sure that any effect they saw was caused by the MMR and not something else. Dr. Hooker’s “re-analysis” of the study does not account for confounders properly and even if it did, the population of African American males in the study is too small to support any broad conclusions. And one more time, even if the supposed link between African American males and the MMR vaccine were significant, it still rules out any link between the vaccine and all other groups. You can read about these issues in much more detail here and here.

It’s well known that Andrew Wakefield’s research into the MMR vaccine and autism was fraudulent. His film is based on equally poor science.

3) Despite Richard Castro’s statement on your blog that the Tribeca Film Festival succumbed to “pressure to censor” “Vaxxed,” there was no censorship. As I’m sure you’re aware, the First Amendment guarantee of freedom of speech prohibits the government from restricting speech. The Tribeca Film Festival is not government. It is a private organization that is free to screen, or not screen, any film it chooses for any reason. Indeed, Tribeca rejects the work of thousands of filmmakers every year. I’m sure Cinema Libre rejects many filmmakers as well. Are they being censored? Of course not.

On the “Vaxxed” website, Andrew Wakefield and Producer Del Bigtree claim that they were “denied due process” when Tribeca decided not to screen “Vaxxed." This is absurd. There is no such thing as due process when it comes to the decisions of a film festival selection committee. Nor should there be. If such a thing existed, every prestigious film festival would spend all its time sifting through complaints from unhappy filmmakers. There will always be unhappy filmmakers who are denied admission to film festivals. Andrew Wakefield is now one of them. But he is not a censored filmmaker.

On a personal note, I was and remain grateful for the work Cinema Libre did to promote “Loving Lampposts” when it was released. You got the film screened at venues I could not have and publicized it through news coverage I did not have access to. I hoped and believed that along the way, you came to appreciate the film’s message that autistic people can thrive when they are accepted and when they receive the support they need to function in a world not built for them. Apparently, and much to my dismay, this message did not sink in.

By releasing “Vaxxed,” Cinema Libre is actively harming thousands of autistic people. While we should be discussing ways to best support autistic people and help them lead fulfilling lives, you would instead have us follow a discredited scientist and dishonest filmmaker down a rabbit hole that leads only to long debunked conspiracy theories. I am profoundly disappointed.

I don’t expect that Cinema Libre will change its decision. But given our long business relationship, I felt I owed you this explanation of where I stand. I hope that sometime in the future you may find ways to undo the damage you are about to cause.

----

Filmmaker Todd Drezner is best known in the autism communities for his neurodiversity-themed movie Loving Lampposts. He is the father of an autistic son. We are printing this open letter with Todd's permission. The original can be found on his Facebook page.

Tuesday, March 29, 2016

Hillary Clinton Advocates Fair Pay for Autistic And Disabled Workers

Shannon Des Roches Rosa
www.ThinkingAutismGuide.com

Yesterday was my autistic teenage son Leo's annual IEP meeting, in which various people who help him achieve maximum awesomeness (teacher, speech language pathologist, occupational therapist, school district representative, home program director, etc.) meet at his school, to determine what Leo-appropriate educational goals will be for the following year. These meetings are generally collaborative, positive, and entirely Leo-centric. I usually leave feeling relieved, and that my son is surrounded by the right people (and, knowing that this is not the case for many other families, incredibly lucky).

This year, though, I panicked a bit. Not because of the approaching year's goals, but because this was the first year we talked about a transition plan. About what Leo would do after he turned 22, and would no longer be able to attend his school. And optional placeholders like, "Employment: Day program, supported workplace." Which made me shiver, because "supported workplace" essentially  means putting people like Leo in a sheltered workshop, where they often do boring, repetitive tasks all day, are expected to be happy about it, and don't get paid fair wages for their labor.

Even though The US Department of Justice has pledged to enforce the Supreme Court's Olmstead decision "to eliminate unnecessary segregation of persons with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate to their needs," and states like Oregon are phasing out sheltered workshops, while other states like Maryland have voted to end the Subminimum wage for workers with disabilities -- our home state of California still supports the creation of sheltered workshops and paying its workers "Special Minimum Wage." That makes me extremely nervous about Leo's options.

My thinking on the matter is in line with Vanita Gupta, the head of the Justice Department's Civil Rights Division, in that "People with disabilities deserve opportunities to work alongside their friends, peers and neighbors without disabilities and to earn fair wages."

And that is why I was so relieved to see presidential candidate Hillary Clinton address the matter of fair wages for people with autism and disabilities as matter of national urgency just yesterday. Clinton said:
"When it comes to jobs, we've got to figure out how we get the minimum wage up and include people with disabilities in the minimum wage. There should not be a tiered wage, and right now there is a tiered wage when it comes to facilities that do provide opportunities but not at a self-sufficient wage that enables people to gain a degree of independence as far as they can go. So I want us to take a hard look at raising the minimum wage, and ending the tiered minimum wages, whether it's for people with disabilities or the tipped wage ... When people talk about raising the minimum wage, they don't always talk about the legal loopholes that we have in it and I want to get rid of those, and I want to get rid of that for people with disabilities, too."
If you'd prefer to watch the video yourself, please do:


And if you want to thank Clinton yourself for standing up for our community members, you can do so directly, on Twitter. Here's what I wrote:
[image: Tweet from @ThinkingAutism, reading: "Thank you, @HillaryClinton, for standing up for fair wages for #autistic people & people with disabilities: http://www.thinkingautismguide.com/2016/03/hillary-clinton-advocates-fair-pay-for.html"]
Meanwhile, I'll be researching Leo's non-supported-workshop options. Thankfully, we still have a few years.

Monday, March 28, 2016

NeuroTribes: A Reminder And Reflection of Our Humanity

M. Kelter
theinvisiblestrings.com

As an autistic, the impression I was left with after reading Steve Silberman's book NeuroTribes was one of enormous relief. The book not only avoids the usual pitfalls of fear-mongering and stigmatizing language that surround the topic of autism, but actually explains the origins of those pitfalls -- as it pieces together a comprehensive history of both the autism spectrum itself, and the various ways 'autism' has been defined over the decades.

[Image: The cover of the book
NeuroTribes, by Steve Silberman.]
Knowing this reaction to NeuroTribes had a lot to do with my own diagnosis, I became curious as to how non-autistics feel about Silberman's book. The result was conversations with two people who have different connections to autism: Michael McWatters, the father of an autistic son, and Deborah Budding, PhD, a clinical neuropsychologist.

Michael McWatters

M. Kelter: First off, just a general question: what did you think of the book? I was curious about your overall impression, and how much of the material you found to be new or interesting.

Michael McWatters: I loved it. I was familiar with many of the stories and insights covered in the book, but Silberman goes into such depth, and is such a good writer, that I was engrossed throughout. In fact, NeuroTribes has become my de facto recommendation, or gift, for anyone interested in autism

M: For me, the book has been somewhat of a revelation, because I've had a hard time understanding how to process the wide variety of experiences autistics can have. Prior to this book, I wasn't really sure how my own experiences fit in with the topic of autism. So as I'm reading this historical account that spans more than 70 years, I'm surprised at how personal the material feels, at least for me. It's the first time I've read something that helps me develop more of big picture understanding about autism and my own life. Knowing what the book meant for me as an autistic, I was curious if it had a particular meaning for you as a parent.

Michael: Shortly after my son's diagnosis, I read Paul Collins' excellent book, Not Even Wrong. In it, Collins' interweaves the story of various fascinating historical figures who were likely autistic with the very personal story of his own son's autism diagnosis. The underlying journey Collins takes -- guided or inspired by these historical figures -- is toward acceptance.

What Not Even Wrong did for me several years ago, and why I still recommend it to parents, is strikingly similar to what NeuroTribes did when I read it a few months ago: it put my son's autism in a historical context. Both books remind me that Colin’s autism isn't a unique and isolating developmental disorder or anomaly, but integral to the human condition.

NeuroTribes covers more territory than Not Even Wrong, in particular the ways in which autism and autistic people have been perceived and treated throughout history. While there are some obvious high points -- the work of Lorna Wing, for example -- most of the history is bleak, depressing. And so NeuroTribes reminded me to be grateful that my son is alive today [the modern era], in spite of the progress yet to be made.

The very name of the book -- NeuroTribes -- is evocative of a community, a movement, that deserves understanding, acceptance, opportunity. I love to think of Colin as part of that tribe.

M: What would you want other parents to take away from NeuroTribes? Anyone new to the scene will likely google autism and find a million different views about what they should think, do. Is there is anything in the book that you feel would be beneficial for those trying to sort through all of the competing information out there?

Michael: This is a tough question, because there are so many things in NeuroTribes that I think are helpful to people who are trying to understand autism, and who are sorting through all the confusing and conflicting information available to them. For example, Silberman does a fantastic job debunking all-too-common myths; he provides moving portraits of autistic people and their families; he tells of a deep, fascinating, and often troubling history; etc.

But if there's one thing I hope people take away from NeuroTribes, it's this: How we treat autism and autistic people is a reflection of our humanity. On a societal level, treating autism as something Other results in the dehumanization of autistic people, and if history has taught us anything, it's that horrible things happen when we dehumanize people. On a personal level, viewing autism as something Other reduces the opportunity for acceptance.

M: Portions of the book delved into the history of parent advocacy groups, of their efforts to gain education rights for their loved ones and fight the stigma surrounding autism, and so on. My sense is that these stories serve a dual purpose: they provide terrific examples of how to be effective as an advocacy group ... and, in some instances, they function as a cautionary tale about how group efforts can get sidetracked and lose sight of their primary goals (I'm thinking of the switch to autism pseudo-science and conspiracy theories that began in the '90s).

My sense is that any collaborative effort can succeed in similar ways or struggle in similar ways. Did this section of the book add anything to your sense of how best to be an advocate or how best to share information about autism with the public?

Michael: Unfortunately, autism can be a polarizing topic, especially among parents. For example, as much as we've debunked the vaccines-cause-autism-myth, the notion that autism is the result of injury or defect persists. Since I don't agree with that view, it would be pointless for me to participate in any group -- large or small -- that does. It would be a frustrating and fruitless endeavor.

I guess one could argue that I should participate, if only to help others "see the light," but unfortunately when one buys into the notion that there's a vast conspiracy at work, it's nearly impossible to convince that person otherwise. At least, that's been my experience.

NeuroTribes describes groups of people who were able to make great progress, but it also describes groups that became mired in endless debate or -- worse, were misled. Since I'm not a joiner by nature, and since large groups give me the willies, I tend to avoid them for the most part. But, if I do participate in a group, large or small -- and sometimes I do -- I like to agree with the shared values or guiding principles of that group.

----

Deborah Budding, PhD

M: What did you think of the book?

Deborah Budding: I loved it; it made me so happy to see a comprehensive consideration of the history of autism without over-pathologising or avoiding the difficult truths about the ways people were (and still are) being misunderstood and mistreated.

I very much dislike the way "low functioning" and "high functioning" considerations are pitted against each other currently in larger society, particularly by parents and the treating professionals upon which they rely. I have seen parents of autistic children treat adult autistics very poorly. I have to remind them that how a child currently "looks" can be very different from how they will look as an adult, or not very different. Developmental trajectories can vary widely. I recently had a copy of NeuroTribes with me at a local jail when I was evaluating someone, and lent it to the supervising staff to read while they waited for the inmate. They thought it was incredibly helpful information.

M: I wanted to ask a few people about the book because my sense is that it will likely mean different things to different people.

Dr. Budding: It should mean different things to different people. Autism Spectrum is not a monolith, any more than is any neurodevelopmental difference.

M: When I first starting writing personal stories online, I had a hard time understanding where I fit in with the bigger picture of the autism spectrum. And I did receive (and still receive) a lot of negative feedback from people who want to define autism more narrowly. So, for me, NeuroTribes has meant having a better feel for what the historical record really says about autism. I was wondering what the book means for you, as a neuropsychologist. Did it add anything to the way you think about autism, be it historical or diagnostic information?

Dr. Budding: It definitely renewed my anger about the profound disrespect many "helping" professionals demonstrate toward people with neurological differences and disabilities. The way people develop "treatment" is in many ways shaped by ideas about what areas of function are to be considered important and beliefs about how "people learn."

Most mental health professionals are not trained with a robust understanding of neurodevelopment, or between-species evolutionary links in behavior, and most are trained to have a very narrow understanding of what "executive function" and overall cognitive function encompass.

M: In terms of how we define autism, NeuroTribes felt like a big pause button on all of the competing arguments. Certainly it offered support for the concept of a spectrum, but more than anything, it felt like an effort to say, “Let's step back, take a breath and just carefully examine where all of these different viewpoints came from.”

After reading the book, where do you think we're going, in terms of understanding what autism is and how we should be using diagnostic categories?


Dr. Budding: Neurodevelopmental disorders are complicated and we don't yet have any really good consistent ways to categorize and conceptualize them apart from the DSM, which is very limited. The DSM was created pre- fancy brain imaging and genetics studies, and uses rather rigid behavioral definitions that aren't brain based.

Nevertheless, aspects of DSM categories remain useful. At this point, ADHD, Autism, OCD and Schizophrenia (to name a few) are all understood to be highly heterogenous in nature, with a good deal of co-morbidity and overlap. The Research Domain Criteria (RDoC) approach was supposed to assist with this but has also been mixed in terms of results and level of acceptance. I think these things will continue to evolve, as things do.

The larger, macro diagnosis of Autism Spectrum Disorder (ASD) remains useful. The concept of a spectrum is very consistent with my training and my personal experience of people. Clinically, I prefer to approach individual cases in terms of trying to as fully as possible understand communication skill differences, to assess various areas of self-regulation and attention capacities (level of comfort/discomfort with novelty, etc.) in order to further guide treatment approaches. I tend to favor addressing and supporting "bottom up" challenges with sensorimotor/regulatory function and sorting out and supporting communication strengths and weaknesses before jumping right to "top down" (and sometimes too rigid) behavioral training of "wanted" behaviors.

M: Looking at your bio, it says you specialize in "subcortical contributions to neurodevelopmental and psychiatric" conditions. Was there anything in NeuroTribes that resonated with your particular area of study?

Dr. Budding: My approach to development emphasizes the importance of sensorimotor development/function and the links between this and cognitive and emotional development. Many autistic people I have seen have been characterized as "oppositional" or "stubborn" because they had trouble formulating a response to someone in the time expected, or in the way expected. Or were rigidly forced to make eye contact without sensitivity to the fact that perhaps eye contact made it difficult to focus on what was being said.

I think it is important to understand that disability is in many ways contextual. Some differences are disabling for people, and they deserve support and assistance. I have found following Real Social Skills on Twitter very helpful in keeping me aware of the importance of respecting communication differences, and not imposing my own interpretations on other peoples' behavior.

----

Michael McWatters can be found on Twitter, as well as Medium, where he writes about fatherhood and the autism spectrum.

Deborah Budding can be found at her website, is active on Twitter, and runs the podcast Neurocurious.

Sunday, March 27, 2016

Imposter Syndrome and My Late Autism Spectrum Diagnosis

Andrea Michael
andreamichaelart.wordpress.com


Django of Cacharel
[image: black-and-white drawing of a dark horse
wearing a bridle, with a windblown mane.]
I wasn't prepared for the imposter syndrome that set in after my autism diagnosis. Why? Possibly because, after my diagnosis, I scoured the Internet for autism material, found too many opinions that my version of autism wasn't "real autism" -- and heard more often than not that if I was late diagnosed, that meant I was at the very edge of the diagnosis, just a mild case with no "real" challenges.

At the time of this writing, I am in my thirties. I was diagnosed on the autism spectrum three years ago, after seeking answers for troubles that had been ramping up since my childhood. My diagnosis of extreme chronic anxiety as a teen, then one of depression (later extreme chronic depression) in my twenties, while true and correct, were not the entire story: being autistic was.

So, I am autistic. I wish to be an advocate, and I also wish to become known as an artist on the spectrum, to be able to make an independent living from my art, one of the great things being autistic gives me.

But I still struggle with imposter syndrome, with feeling like my successes are fake, that I am a fraud, and that it's only a matter of time before someone catches on, and calls me out. I don't consider having autism as a success or a failure so much as something that just 'is,' but I feel like a phony.

That is why it took me a little while to be open about my diagnosis beyond immediate family -- I was scared of what reactions might be. But as I feel a great need to be 100% truthful in my interactions with the world -- being secretive about parts of myself creates this awful internal conflict that I can't resolve -- I decided to be open despite the fear, both to relieve the internal conflict, and to advocate for and take better care of myself. (I've found being open, and talking about my experiences, also has the added benefit of helping  people who have autistic kids, or are on the spectrum themselves.) 

When I finally told the people around me about my diagnosis, the range of responses ran from skepticism to, "Oh, I suspected it years ago." Those different reactions were hard to reconcile, and a part of me is still sure that one day someone will point at me and say "faker!" -- because I was not diagnosed sooner.

The imposter syndrome also extends to my art (which is at andreamichaelart.wordpress.com, www.facebook.com/AndreaMichaelArt, and www.redbubble.com/people/toastweasel). As a child I drew a lot, and was definitely ahead of my peers in skill level, but it was a normal progression of practicing a lot and incrementally improving. However in my early twenties, an SSRI medication destroyed my ability to do almost any art for ten long years.

Leo[image: A medium-haired gray, white, and red dog]
And then in 2011, I picked up my pencils and  began drawing highly realistic animal portraits -- without having practiced. I was also able to pick up any other medium and master it immediately.

Even though I started to find success, and sell and exhibit my work, I felt like a fraud as an artist. I hadn't put in years and years of hard effort to get to this point like other artists; it had just happened to me. I actually quit art for a time as the stress of being in the public eye, coupled with the feeling of being a fraud, was too strong. Then, in 2015, I was identified in  as having a savant skill by Darold Treffert, a leading expert in savant syndrome. Since then I've been trying to confront the imposter syndrome, and not let it hold me back again.

Part of the imposter syndrome probably has to do with the fact that, in the '80s, an autism diagnosis didn't exist for kids like me: I was considered merely an academically gifted, artistic, shy little girl. My autistic traits were explained away or overlooked. My obsessive focus (horses) was deemed normal for a young girl. My extreme anxiety and confusion during overwhelming situations was termed "shyness." I was hopeless at making friends, and terrible at keeping them. I had sensory problems, and was stressed by weird things like the unpredictability of different showers' controls and water temperatures; the strain of not being able to generalize caused me huge amounts of anxiety. My version of imaginative play was re-enacting scenes out of books or TV shows. While not technically part of autism, my (commonly co-occurring) gut problems were awful. The list goes on -- and was completely ignored.

I also flew under the radar as child because I didn't have raging public meltdowns. Instead, I held everything inside until I could take myself somewhere quiet and alone, to bawl and rock and lose control in a self-imposed cocoon. Self-injurious behaviors were, and are, par for the course during the worst of those meltdowns, and continue to this day, waxing and waning with my anxiety levels.

Yet I was a different enough kid that I was always shoved to the margins in the schoolyard, bullied by both boys and girls -- even as I coasted through school without needing to apply myself, at all. I was a typical "little professor" -- academically gifted, hyperlexic, and encyclopedic in my knowledge of obsessive topics and vocabulary. Beyond my mother having a time of it trying to get me to do my chores, my executive function issues didn't really begin to reveal themselves until I hit the later grades of high school, and it was suddenly apparent that I had no idea how to study, or organize myself and my time in order to do so -- and not for lack of trying.

Little Forest Guardian[image: fanciful green dragon-like forest creature
sitting on a mossy branch, with an orange butterfly.]
I adapted to all of this by becoming a chameleon. It wasn't a conscious decision, but it made people like me more -- which reinforced my adaptive mechanism. I made an art of quietly watching the people around me, absorbing the mannerisms of people who seemed to be doing well socially, until I was sure I could put on a convincing performance.

My chameleon skills were a double-edged sword: I could appear fairly "normal" for stretches of time, but they also drained me completely. It was like being an actor on stage, without break, for hours and hours every day. And I became so many different people that I felt I'd lost any sense of my own identity.

A Gentle Touch
[image: black-and-white drawing
of an elephant embracing another
 elephant with its trunk.]
My childhood anxiety and depression worsened until I fell apart completely in high school -- my first break down. There have been many since: when I tried to keep jobs, when I tried to attend university, when I try to do very much socially. The longest stretch I have managed to keep a job for is one year, and in all my jobs I camouflaged my struggles so well that no one suspected my challenges -- until I suddenly broke down and had to quit. I flew by the seat of my pants, using intellect and studying people to get by.

Despite being intelligent, loyal, honest, conscientious and a hard worker, I just haven't been able to deal with the demands of a workplace. I have tried medications and they only prolonged the time until I fell in a heap; they didn't stave it off completely. In addition the medications had long-lasting odd side effects to the point medical professionals became loathe to keep trying them with me.

Since diagnosis I have learned that all the myriad little parts of my condition combined to make my life turn out a little differently than I, and those around me, were expecting. I now know that I have auditory processing disorder, sensory processing disorder, synesthesia, prosopagnosia, executive dysfunction, emotional dysregulation, meltdowns, shutdowns, and so forth.

I dropped my chameleon approach for a time to figure myself out, and, in an ironic twist, was considered by some as "faking it" to seem more autistic. I have since settled on a middle ground of being somewhat authentically myself, with some adaptive social behavior in order to get by without completely ruining myself.

There is an enduring myth that those, like me, in the Asperger's part of the spectrum  are just a little quirky and only have some social challenges. That may be true of some, but it's quite possible to be fairly severely affected by a great many challenges as well. Losing control in front of others fills me with a deep sense of shame and self-loathing so I avoid it whenever possible. Despite usually being able to bottle myself up until I get to a safer time and place, there's no avoiding impending meltdowns -- and they are often all the more mentally ferocious and exhausting after I am forced to hold them at bay.

In short, I'm a textbook case for a female on the autism spectrum. Because I have always been the type to implode quietly instead of explode outwardly, it can be hard for people to see the truth of it because it doesn't align with the stereotypical view of what autism is, and how it manifests. This just serves to feed the imposter syndrome monster, because I struggle with feelings of being judged whenever I speak up.

Now, instead of letting my monster hold me back, I'm choosing to be open about it. If there are other autistic people like myself, struggling with feelings of imposter syndrome, I want them to know they aren't alone.

Saturday, March 26, 2016

Being Seen: An Interview With Autistic Memoirist Anlor Davin

Interview by M. Kelter

Anlor Davin is the author of the upcoming memoir, Being Seen. In her book, she describes lifelong struggles with "sensory chaos" and social pragmatics, all of which culminated in an adulthood diagnosis of autism. She was raised in France, but later immigrated to the United States. We recently spoke via email about these experiences, and her thoughts on navigating life on the spectrum.
 
---

M: I hear from many adults who suspect they are autistic, but grew up before spectrum diagnoses were available. They often ask if looking into the possibility of a diagnosis is something they should do, or if it is something they should avoid, since they've "made it that far" without one. I wonder if you could address those questions. What did the diagnosis mean for you, in terms of your quality of life? Were there any downsides?

Anlor Davin
[image: portrait of a white woman with
short curly salt-and-pepper hair.]
Anlor: I have a two-part answer here:. It seems to me that whether to be diagnosed or not as an adult (or even as a  young adult) has a lot to do with money -- like so many things in life.
 
What I mean is that once an individual has a formal autism diagnosis, it may become even more difficult to find a job. Imagine telling the person who interviews you for a job that you are autistic: Immediately the person will probably make negative and wildly incorrect assumptions about you and your possible deficiencies with respect to the job. It is true that the stigma of autism is lessening with each day, but autism is still very misunderstood and is often seen in a negative way -- even by doctors who are far too often ill-equipped [to make such judgments], though they usually feel themselves to be knowledgeable. Even if you do not reveal your autism diagnosis during an interview, employers are likely to discover the truth, as the Internet is every day getting more personal about such information. 
 
On the other hand, having a formal diagnosis helped me start living again. After my diagnosis, I started to receive proper care, not only in the form of proper medical treatment (a true life-saver for me) but also when I started to receive financial support through Social Security Disability. I was also able to receive financial support to address the painful and physical problem caused by nerve damage. All this help came because of my diagnosis.

M: One of the recurring themes in your book is a struggle to create lasting friendships. As you describe, they generally start well, but eventually sour. I've noticed this in my own life as well. I was curious if you've been able to piece together why this happens. Sometimes, when I am meeting people, I make the mistake of trying to mask my social/sensory differences. I wonder if friends drift away because, as they get to know me over time, I'm just not the person they initially thought I was. 

Anlor: Before going further into this, I want to say that presently this is no longer such a problem for me -- a fact that I completely attribute to my Zen practice: I have learned to be less abrupt, to make comments that appease the flames of fear that differences can bring up. The word “sour” is a very good word to describe the difficulty. I think that fear is at the root of this eventual “souring” of friendships, as we all have expectations about one another and when these are not met then fear unconsciously starts to sour relationships: As you say, “I am not the person they initially thought I was.”

M: You grew up in France, but moved to the states as a young adult. Do you find that being autistic makes life as an immigrant more or less difficult? I've never moved to another country, but when I travel outside of the states, I often feel more at home in places where I am not expected to know the language and customs. You've had much more intense experiences in this regard, so I was curious about your sense of this.

Anlor: There are two sides to it: on one hand, and as you say, when one comes from another country others see your differences as being the result of your foreign origin and so fear is less likely to arise ... at first. When people live with you longer, however, they start to see the differences more in-depth, and as in any relationship the relationship can sour over time. 
 
Also, the United States is often described as a melting pot, and because of this mixing differences are often accepted as normal. People come from so many different countries and cultures here that is almost a “momentum” to accept each another in order to live together. The situation is far from perfect, but compared with the feeling of stagnation in some countries (for example, I am afraid to say, in the provincial France of my youth). In this connection I definitely can feel a difference here. On the other hand, being autistic also makes life as an immigrant more difficult, at least it did for me because it meant I was all alone with the difficulty (I came to the US alone) and I had no support from family or friends.  

M: Throughout your book, you describe battles with sensory issues. Eventually, you begin to put effort into shielding your senses as needed, even though these efforts can clash the surrounding social context. For example, people can react negativity to folks who wear sunglasses inside or noise-cancelling headphones in public spaces. For people who are struggling to balance sensory pain and social stigma, what is your advice?

Anlor: Let me be honest here: due to my extreme vulnerability in the face of the aggressive verbal assaults (yes, words DO hurt!) I did not start to wear the protective gear until I was absolutely forced to ... it was a terrible fight for me. But eventually I just had no choice, it was that, or dying. The pain in my shoulder just became unbearable, and this pain was very much linked to when my senses were assaulted, which happened pretty much whenever I stepped outside my door ... and sometimes also inside my apartment. 
 
Plus I was older, and I had already started to practice Zen, so I was able to consciously tell myself “too bad if others don’t like or understand it.” I feel bad for children with this problem: remember how when you were a teenager all you wanted was to conform? That has been shown to be a rather normal phase in the development, so of course few of us are going to want to look different. When I am given a negative and hurtful comment, I soothe myself by thinking how I am the pioneer for future generations: I hope that soon enough autistic people’s accommodations in the forms of ear, smell, and light protective gear will be perceived to be just as “normal” as a blind person’s cane. 

M: For reasons I can't articulate, I've found Zen Buddhism to have a strong resonance with my sense of the world, and my confusion about social life and even basic facets of perception. I've just always felt a connection between autistic experiences and the way reality is sort of playfully disassembled in Zen thinking. I'm very much a casual reader of these things, not a student, so I may be forcing connections that don't exist. Your book includes descriptions of beginning to practice Zen: I was wondering if, for you, there has been any interplay between Buddhism and life on the spectrum. 

Anlor: Talking about Zen is always tricky, as words simply can’t explain it. A common metaphor is that Zen is like a recipe that is useless and meaningless until one follows it. That said, it is true that Zen “sits well” with autism. I felt this palpably at first when little Zen groups were the only places I could go in public when sensory problems overwhelmed me. That is, the groups were for me the only somewhat-safe environments with sufficiently little noise, light, smells, and so on.  
 
In practicing Zen the idea of non-aggressive behavior is important, and as a result people who practice it generally start to pay attention to each other more. The more they practice Zen, the less they usually are, in my words,  “sensory aggressive,” and they come to hence avoid slamming doors, wearing perfume, constantly shining lights, and so on. Nowadays I feel that the “paying attention” that is at the core of Zen practice actually brings a special feeling of well-being to everyone in their own way, not just to me as an autistic person.
 
----

You can learn more about Anlor Davin and details about her memoir Being Seen, at her website.

Wednesday, March 23, 2016

Switched On: A Frank Conversation With Author John Elder Robison

[image: Book cover, with the title,
"Switched On: A Memoir of Brain
Change and Emotional Awakening"]
The new book Switched On is author John Elder Robison's deeply personal account of seismic shifts in his emotional, social, and perceptual responses to other people, the world, and his own memories -- due to participating in brain research on Transcranial Magnetic Stimulation (TMS) and autism. I spoke with Mr. Robison about his hopes in choosing this journey, its costs in terms of his own health and happiness, his autism advocacy, and the risk of frantic parents assuming his story means they need to use TMS on their autistic kids.

Thinking Person's Guide to Autism: Are you concerned that people might see Switched On as an argument for “normalization” treatments for autistic people? Even though you are careful to emphasize that “we cannot know the future, or the potential, of anyone,” even though you rail against those who see anything atypical as being “broken,” and even though you describe your autism diagnosis as “empowerment”?

John Elder Robison: I am already seeing people raising these questions online.  The first thing I want to say is, let’s cut through the bullshit.  There are no amorphous “people” looking to “normalize autistics.” We have moved a long way toward the world of Fahrenheit 451, but not that far.

What we do have are parents who may want to subject their children to powerful therapies like TMS in hopes of “curing their autism.” They may do that after hearing scientists talk of the power of early intervention. I think that is a huge risk, not just with TMS, but with powerful interventions in general. I have raised that question and continue to do so in my government committee service.

So let’s ask that another way: Should we be concerned that some parents will subject children to TMS just as they subject kids to powerful chelation, bleach enemas, and other ugly “treatments” in a quest to “cure their autism.” And to that I say, yes, we have good reason to worry. It’s already happening with things like chelation.

But TMS and my book are not the problem. The problem is one of societal shame around autism and parental inability to accept what is. There is no ethical problem with an adult like me going into TMS therapy eyes wide open. Using TMS to reshape a five-year-old is a lot chancier.

The problem is that we have a good ability to diagnose autism in very young children, but we do not have a good way to predict degrees of future disability or exceptionality. To apply TMS to those kids might head off any prospect of exceptionality and it might be the normalization some advocates fear.  So what can we do about that? Since we can’t stop the forward progress of science that leaves education -- the same tool we have to address ethical risks of autism and genetic tests. My advice is to start the conversation now, because therapies like this are coming, and I think my book opens the dialogue.

The other problem we must address is ignorance, or pseudo-knowledge. Somehow, in the last few decades, science in America has lost ground to faith and superstition. When I was growing up, we were taught evolution in science class. Period. Now, schools “teach the evolution-creation controversy,” or they “teach both sides.” There is no controversy, among credible scientists. Yet a large portion of the American public now doubts the evidence of evolution; one of the foundation theories of modern biology.

TPGA: Where does that leave a complex science-based therapy like TMS?

JER: That sets the scene for parents -- most of whom have no formal education in science or medicine -- to question everything they hear when it comes to autism and what should be done to accommodate, treat, or cure it. What some see as fringe science or even child abuse is perceived by others as smart parenting and standing up for our kids. We have a world where people equate TMS protocols developed at Harvard Medical School with bleach enemas they saw at an autism conference. When those people have guardianship of autistic children we have good cause to worry.

[I think] TMS is one of the most powerful tools available to the neurologists of tomorrow. Our goal should be to make sure TMS therapies are developed and used in a responsible manner. That means supporting research into the many possible applications, and examining the ethical questions presented by such a powerful tool.

TPGA: Your (now ex-)wife Martha and your son Cubby both thought you were fine before TMS, and Martha’s fears about you not needing her to be your emotion detector came to fruition -- you ended up divorcing. You were devastated that TMS caused you to lose your “emotional shield,” in terms of suppressing difficult childhood memories, and suddenly being able to perceive negative emotions in general — and patronizing or unkind behavior from people you’d previously considered friends specifically. You even had suicidal thoughts. Yet you were able to connect with and understand the emotional motivations of customers better, had remarkable and unprecedented emotional responses to music, and made a pact with yourself not to be mean. Was your TMS experience worth the journey and personal costs?

John Elder Robison
[image: A silver-haired white man,
wearing glasses and a striped polo shirt.]
JER: Looking back at the experience I’d say the benefits were great, but the cost was very high. Contrary to what I had thought, “getting smarter” is not a free ride.

For me, the TMS journey is intertwined with writing and autism advocacy. There’s no doubt I am more successful relating to casual acquaintances and business clients than I was a decade ago. And I don’t doubt that TMS facilitated a lot of that change. Yet I sometimes wonder where I’d be, had none of that ever happened. My business was considerably more successful before I took up writing and autism advocacy, and it’s quite possible I would be much more secure today if I’d simply stayed the course with cars and never picked up the “autism pen.”

That said, I have no doubt that my greatest gift to the world has been the sharing of my ideas about autism and growing up with the world. My car repair business never served a social purpose as my advocacy does. I do have critics and detractors but the overall commentary toward my work is strongly positive (hopefully that continues with this Switched On!!) But that’s a benefit to the broad public. What about the benefit to me? That is less obvious.

I certainly appreciate that my advocacy work has made me friends everywhere I go, and that is a remarkable thing.  And I appreciate that my advocacy work has taken me all over the world, something few people get to experience. The question is, am I happier having done that, versus remaining in my small city and running the car company? I don’t know. I doubt it.

As I travel and meet autistic people around the world I see a mix of hope for a better future and sadness for the oppression and discrimination past and present. I feel compelled to speak out, but that does not give me happiness. It’s more like a duty that I am driven to try and fulfill. I do my best with it, and maybe that has to be enough. As much as I enjoy meeting people and feeling like I am doing some good, the travel is exhausting and the stress wears me out.

For me, one central problem is that I am never able to relax and get free of anxiety for extended periods of time. I read that autistics are at greater risk of mortality and I suspect that is one reason -- many autistic adults share my anxiety issues. It would be great if there was a therapy to relieve that.  My anxiety is worse now then before I wrote my first book.

I volunteered for the TMS study because I hoped to relieve what I saw as a continuing disability in me -- my limited ability to meet and engage people. I also hoped I might take part in developing a therapy that could help younger autistics. I wanted to do that because I remember how difficult my own earlier years were. I believe I got what I hoped for and more, but there was a high price to pay for the insight and ability.

TPGA: What are your thoughts about TMS not building new brain pathways, but “turning on” what’s already there? Especially considering that autistic development is atypical, and many autistic adults report punctuated but increasing skill development and emotional maturity as they age. Also a lot of autistic people report being incredibly emotionally perceptive, often to the point of being overwhelmed, like you bursting into tears after your first TMS session, or your resonating with Martha and her debilitating depression. Is it possible that TMS jump-started your next phase of autistic growth?

Before TMS: Robison's photo
of Journey's Neal Schon

[image: white guitarist with curly
brown hair, mid-shred.]
JER: Yes, I think TMS supercharged the process of plastic change for me, with respect to people skills. The dramatic rate with which I acquired those skills after TMS was unmatched before or since in my life. The change in how I process photos was sudden, striking, and seemingly permanent. Those are both examples of plastic change.

Toward the end of Switched On I talk about visiting the labs of Marcel Just and Nancy Minshew in Pittsburgh.  They are studying the way autistic brains continue to develop throughout life, and indeed they measure changes in autistics 50, 60, and older. The Switched On story is a vivid demonstration of that, in my case.

I don’t have any way to know if TMS started a phase of growth or if it just supercharged particular areas of development. The thing is, the brain is so heavily interconnected that stimulation in one brain region could in principle have an affect almost anywhere else.

After TMS: Robison's photo
of Kansas's Dave Ragsdale

[image: Smiling white man with bushy
white hair, playing a fiddle. Photo
colors are highly saturated.]
TPGA: You were careful to highlight that being “emotionally blind” is not the same as not caring, and you cite a study in which autistic participants had identical physical (sweating, etc.) reactions to witnessing others in pain to non-autistic participants, even if their behavioral reactions differ and might be imperceptible to non-autistic observers. How do you think other people can be more considerate of autistic people’s emotional capacities?

JER: That is a hard thing to answer. What the study you cite showed was that autistic people have strong reactions to scenes they witness even as their faces and bodies gave little or nothing away. When it comes to dealing with other people and their reactions to us, that non-response is a problem. If we give no sign of reaction, we will be treated as if we do not care about the event just witnessed. That may have a negative impact on the autistic person but I don’t see how we are going to change that with the public, only ourselves.

After TMS: Robison's photo of an abandoned
railroad bridge in Dover, Vermont

[image: Inside of old metal railroad bridge,
against a blue sky.
Photo colors are highly saturated.]
We can certainly learn when a response is expected, but I don’t think we need TMS for that. It’s a skill we can acquire right now, by paying close attention to the dynamics around us. If my experience is a guide TMS could help but it’s an issue we can address either way. In my opinion this is the kind of skill we are wise to learn.

But that’s not what you asked. You asked how other people can be more considerate. I don’t see how we individuals can make other people more considerate, or change them at all in the short term. Education may have that long term effect. Legislation may help. But changing the public’s view of autistics is going to be just as long a road as changing the public’s view of (for example) African-Americans or Hispanics. I think members of those groups would say the American public has a long way to go in that area, even after fifty years of effort. 

TPGA You mentioned several times that autistic brains are wired differently than non-autistic brains, with both more and fewer internal connections, depending on the brain region. You also mentioned that autistic brain plasticity is unique. What is the current state of research in these areas of autistic neurology?

JER: Marcel Just is publishing studies on that now. I described his collection of brain imagery from autistics of all ages in Switched On. It’s a slow process, building his database. In the next decade I think researchers like Marcel will learn a great deal more about the connective paths in autistic brains versus non-autistic brains.

A few years ago Marcel published a paper in which he answered an age old philosopher’s question via brain imagery: "When you and I see a red ball, do we see the same thing in our minds? If I were to step into your mind at that moment, would the ball be red, or would it be green?"

By looking at the areas of the brain that light up when seeing balls of different colors, and by measuring our emotional responses to what we see, Marcel was able to establish that you and I do indeed see the same red ball. That level of brain imaging can tell us a great deal about how autistics and non-autistics process the world we experience.

TPGA: I didn’t realize until reading Switched On that you’d been diagnosed with prosopagnosia (face blindness) as an adult. That's not surprising in general as it's a common trait in autistic people, but it was surprising to me as you've always seemed to recognize me before I greet you. Can you share some of your strategies for recognizing people without relying on facial features?

JER: I do not know how I recognize people, given my abysmal results on the standard face recognition tests. All I can say is that it’s in context. I recognize cars when they drive into our service department and match them to their owners. I recognize people in situations. For example I recognize you reliably in the autism conference settings where we meet. But if I ran into you at the county fair, I might not recognize you at first.

I suspect recognition is a combination of situation, overall look (rather than just facial appearance) sound, smell, dress, patterns of behavior. However we do it, many autistics with face blindness get by well enough that the disability is never detected. So you might say it’s not a functional disability even as it shows up as one on lab tests.

Here is an interesting twist: When I queried the scientists (who were not autistic) they could not tell one black Mercedes from another. “They all look the same.” But to me, each Mercedes was an individual to be recognized. Does that mean I use the “face recognizing areas” to recognize machines? It’s a question for future study, one that may suggest some of us are adapted that way for a reason.

There’s no doubt most people benefit from recognizing other humans. But it’s just as certain that there are circumstances were recognizing a specific car, or animal, or something else is of equally vital importance. And maybe that was one of our places in society long ago. That’s an example of something that is almost universally called a disability today yet it may have evolved to facilitate our species’ survival.

TPGA: You write that “autism has given me a mix of disabilities and gifts,” including abilities you didn’t always realize other people lacked, like being able to perceive and count fluorescent light bulb pulses, and connect with and understand machines. I’m wondering how much you think your disability has to do with our society’s lack of understanding and accommodation for people who think differently?

JER: Well, my disability meeting and engaging people is not a societal thing. It’s an autistic thing.  If I have a problem reading expressions, eyes, body language and I respond in such a way that people are put off or reject me ... that is not really a society problem. And that was what I hoped to address with my own TMS.

I was disabled in that regard at age five, and age forty-five. And I would have been disabled in the same way, had I lived in 1916 or 1716. The only difference would be that the farther I went back in time the smaller the group of people around me would be and the fewer strangers I would meet (as a general rule). That might have reduced the impact of that particular disability but it would still have been there.

TMS did help with that, and my ability to engage new people is markedly improved today.

I have other traits of disability (GI trouble, minor Tourette's-like shaking, perseveration, and anxiety) that are also autistic and not societal. As it happens, the TMS study I took part in did not target those issues, and they would have been the same in any place or time. That said, there are TMS studies looking into anxiety and perseveration by stimulating different regions.

Some of the societal exclusion issues I talk about in my earlier books (such as failing me in school when I gave a right answer but could not show my work) were not really addressed by the TMS study I took part in.

TPGA: How worried are you about unscrupulous cure-mongers, and others, using your book to push TMS as an autism treatment (some agencies are are already offering TMS for autism) despite all your caveats -- including that your personal experience was research, not therapy?

JER: Switched On describes TMS as a promising therapy for certain aspects of autistic disability, subject to further scientific study and validation. Every scientist you meet in my book is associated with a major university medical school. I specifically raise the concern that TMS by its nature could be administered by anyone, anywhere. So, yes, there is a concern about that but it’s not because of my book. It’s the nature of the technology.

When you raised this question you cited as an example a paper on the Brainsway website.  As it happens Brainsway is one of the makers of TMS equipment approved by the FDA to treat depression. It should not surprise us that Brainsway is supporting research into using their devices to treat other issues -- like autism. My concern is not with them. My concern is that TMS devices are easy for electronic technicians to make, and in principle home built machines could pop up anywhere.

Right now, you can go online and order a do-it-yourself direct current brain stimulation device that is marketed as a tool to sharpen video gaming skills. That kind of thing concerns me but as that example shows, my book is not the driving force. Rather, it’s the opposite -- it opens the ethical discussion.

At this moment the TMS equipment makers will only sell systems to doctors trained in their use. Can those doctors use the machines “off-label?” Sure. But I don’t know if the ethical issues there are any different from those of the medical doctor using traditional psychiatric meds off label. In both cases we have to assume they are trained licensed professionals with the best interests of patients at heart. 

Sure, you will say, not all doctors meet that high standard. But again that is not a TMS issue. It is a “rogue doctor” issue.

TPGA: What would you say to those who ask how you could evangelize an unproven autism treatment even though you have said you are OK as you are?

JER: Social isolation is one of the biggest components of disability for autistic people.  The inability to “read other people” is at the heart of that, and my TMS experience shows that we have the ability to do that locked inside us. In this case “locked inside” is a very apt term, as TMS activated the ability in me for a time, but even with knowledge and experience I cannot access it on my own.

The fact that TMS “switched on” the ability strongly suggests that the wiring is in place, as there was no time for my brain to build paths, and I did not need any practice to use the skill.

If you had experienced that -- as I have -- you would push for more research into it, too. Accepting how I am does not preclude my embrace of therapies or tools to make myself the best I can be.

As for it being an unproven treatment -- of course it’s unproven. The book is a story of participation in scientific research. That is clear. The only way we get proven treatments for anything is to do the studies. Switched On makes a strong statement regarding the potential for TMS, and I hope it drives further attention and study.

That brings me to a larger philosophical question. Do autistics need treatment at all? If you say “I am an autistic person” you are describing a way of being, and you may well feel you are fine with your place in the world just as you are. Or you may wish for help with certain autism-related problems.  When it comes to autism problems, social disconnect is a big one and it surprises me that people are so quick to challenge a possible helpful therapy.

Right now, for social isolation, we have next to nothing. With TMS there is a possibility of real help for those who want it.

TPGA: What’s next for TMS?

JER: The Switched On narrative shows the power of the TMS technology. Right now, TMS is available to treat depression at 1,000 clinics nationwide. Given that a large percentage of autistic people suffer from depression, this should be welcome news.

The studies described in Switched On continue, and they could be accelerated if there was public pressure on the funding sources. Going forward, TMS is under study for anxiety in autistic people. It’s being tested to improve executive function, and to suppress the cravings of addiction.

TMS is also being studied as a tool to suppress epileptic seizures. That could be a lifesaver for people who are more severely impacted.

Switched On is the first account of transformative change with an emergent medical technology.  It’s my hope that it will start a conversation that leads to greater progress in research and greater understanding of the profound ethical questions we will face as we learn to help the mind rewire itself.

Sunday, March 20, 2016

Have We Finally Entered the Post-Vaccines/Autism Fear Mongering Era?

Shannon Des Roches Rosa
www.squidalicious.com

[image: White adult holding the hand of a toddler,
in the wave zone of a beach.]
The times, are they finally a-changing? Are we entering the era so many of us science-heeding autism-focused writers have hoped for, in which mainstream media outlets assume readers already know the autism-vaccine link is total bunk, and get to focus instead on reminding people why it's so important to vaccinate their kids in the first place

I'd really like to say yes, going by two recent articles about the terrible real-world consequences of the vaccine avoidance movement: Over Half Of Measles Cases In U.S. Outbreaks Are Unvaccinated -- Often Intentionally by Tara Haelle, at Forbes; and Why Vaccinating Your Kid Shouldn't Even Be a Question by Maressa Brown, at Cosmopolitan (of all places). Neither article mentions autism once.

Reading vaccine articles that don't include at least one mention of autism is a bit of a shock to me -- I've grown accustomed to automatically scanning all vaccine-related articles for their autism mentions. But it's a welcome shock, because reinforcing the message that vaccines prevent diseases and death -- instead of spending all our time debunking vaccine-autism hoaxes -- is where our vaccine-centric focus needs to be, as a quote from the Cosmo article emphasizes:
"...individuals who refuse vaccines not only put themselves at risk for disease, it turns out that they also put others at risk too — even people who have been vaccinated before, but whose protection from those vaccinations may not be as strong as it used to be."
This is the message mainstream readers need to hear -- that they have the power to avoid preventable disease and death, and not that they should be aware of misplaced fears and false balance regarding autism. (Which is a neurological difference, and autistic people need autism-directed energies focused on understanding and accommodation, not stigma and bogus "disease" talk.)

Can we supporters of vaccines, science, and autism acceptance rest easy now? As one of the moderators of the Thinking Person's Guide to Autism site and Facebook forum, I have to concede, "not yet" -- not in our circles, anyhow. I still can't share articles that mention the thoroughly debunked autism-vaccine link, or Andrew Wakefield's fraudulent actions, without having to zap a slew of antivax truther comments. And there are still enough anti-science autism martyr parent echo chambers, and demagogues of natural mama denalist insularity, that vigilance must be maintained.

But the mainstream media? It seems tired of talking about autism and vaccines, in the same way it tired of highlighting the spurious autism treatment Secretin, or Jenny McCarthy's increasingly frantic attempts at branding. I hope the rest of us will eventually get to move on, too.

If you want to help spread the #VaccinesWork message, or if you're you're looking for resources to help bolster your arguments about why vaccines matter, here are three resources to study and share:
Onward!

Monday, March 7, 2016

Autism Acceptance Month 2016 at TPGA: Calling All Accommodations

headphones
Flickr photo by Laura Wechsler. Creative Commons License.
[Image: East Asian person wearing blue headphones,
seen through the door window on a NYC subway car.]
At TPGA, April is Autism Acceptance Month. In keeping with (and quoting from) The Autistic Self-Advocacy Network's Autism Acceptance Month project:
"April is Autism Acceptance Month. During Autism Acceptance Month, we focus on sharing positive, respectful, and accurate information about autism and autistic people. 
"Autism Acceptance Month promotes acceptance and celebration of autistic people as family members, friends, classmates, co-workers, and community members making valuable contributions to our world. Autism is a natural variation of the human experience, and we can all create a world which values, includes, and celebrates all kinds of minds.
"In a nutshell, Autism Acceptance Month is about treating autistic people with respect, listening to what we have to say about ourselves, and making us welcome in the world."
For Autism Acceptance Month 2016, TPGA would like to focus on Accommodations: things both small and large, simple or effortful, that make the world an easier and less hostile, less stressful place to be an autistic person. Accommodations that people who are not autistic often dismiss, or just don't get. We want to help spread the word that autism accommodations are real, necessary, and that they matter. That they need to be accepted.

We'll be publishing autistic-authored autism and accommodation stories each day during the month of April. If you would like to participate, please send us your account of which accommodations make the most difference in your life, and why.

Written submissions should be:
  • 250 to 1000 words
  • Written in or translated into English
  • Your own work; you must own the copyright 
We will also accept video or photo-and-voice submissions. 

Please email submissions (ideally by March 31, but up to April 15th) to:
Your submission email subject line should read:
  • SUBMISSION: AAM 2016: [The Title of Your Essay]
Your submission email body should read as follows:
  • Title
  • Your Name [the name under which you would like to be published]
  • I agree to the submission guidelines for The Thinking Person's Guide to Autism on [date]
  • Your preferred contact email
  • Your website
  • Your brief, one-paragraph bio
  • Your text, up to 1000 words
[Updated to add: we will be offering a small honorarium of $20 USD per published post.]
We look forward to hearing from you and sharing your story. We especially appreciate your help in highlighting April as Autism Acceptance Month.

Friday, March 4, 2016

Inviting a Disabled Person to Prom Is Not Heroism

Jamie Pacton
www.jamiepacton.com

Recently, a story went viral about a girl who asked a boy with a disability to prom. This high school moment was hyped to give all the feels. But as I browsed the reader comments after the story, the only thing that I, as mom to a wonderful, neurodivergent autistic son, felt was anger.

Over and over, I saw people saying things like, “What a sweet girl!” or “She’s such a hero for doing this….” or “Her parents should be so proud!”

Nobody mentioned the boy, who was the subject of the “promposal,” and was pictured grinning. He might have been the face of the story, but to most of the commenters, he was just an object for the girl to bounce her “heroic” deed off of.

But he’s not an object.

He’s a human being. Like my son he has a disability, like my son he’s also a real boy with thoughts, feelings, desires, and everything else that goes along with being human.

And sure, maybe this girl is nice, but she’s no hero.

And she doesn’t deserve the applause of the internet for being a decent human being, especially when that same internet assumes her date is a charity case.

She didn’t save a life or put herself in harm’s way -- unless you consider asking someone with a disability to a social event putting yourself in harm’s way, which is certainly a troubling and unacceptable position to hold. She isn’t a hero because she invited a boy with a disability to prom. She doesn’t get points for not being mean.

She’s being human.

And perhaps that’s worth celebrating, but there are two humans in this story. And to just shine praise on the girl misses the point.

What if this boy had asked someone else to prom using whatever communication methods were available to him? What if this boy and his chosen prom date went to normal prom with all their other peers? Would we call that special? Would we see him as a hero?

No. We would see them as humans. As teenagers doing what teenagers do -- making friends, going on dates, hanging out at social events.

Just like old ladies don’t cross the street merely to let others help them, disabled people do not exist to make non-disabled people feel like heroes. They are not here to help others feel better about themselves. Their accomplishments -- while worth celebrating like anyone else’s -- shouldn’t be used as a motivational counterpoints to our others' actions.

Thinking like that is called "ableism," which means “a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.”

And ableism is dangerous.

Ableism is the enemy of acceptance. It’s the thing that allows comedians to keep taking cheap shots at people with disabilities. It’s the reason some parents justify killing their disabled children.

Too often, ableism is internalized: our culture rarely allows that an autistic child like my son might be perfectly fine as he is. That his being autistic doesn’t make him less than his non-autistic peers. Instead, we’re told to fix our disabled kids, to make them as normal as possible so they can pass among their peers. Which is a mistake, not to mention unfair.

If we truly want to create a culture that is inclusive, accepting, and supportive of people with disabilities, then we have to recognize ableism when we see it. We have to stop funding things like “Special Needs Proms” and work for making the lives of those with disabilities lives better in real, lasting ways. And we must insist on recognizing the inherent worth of disabled people -- not allow them to be seen as somehow less -- in every situation.

So, the next time you see one of these super-sweet-look-at-the-hero-who-interacted-with-a-disabled-person stories, be aware of the inherent ableism. Remember that there are two (or more) humans involved. Call them both heroes if you must. But please, please don’t cheer someone on just for being nice to a person with a disability.

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