Wednesday, January 11, 2017

This post is not about vaccines

Every time people begin debating vaccines, I know that I need to prepare for an onslaught of messages about how my existence, and the existence of other people like me, is an unspeakable tragedy.     

Every discussion about vaccines inevitably turns to the question of whether vaccines cause Autism. And Autistic voices are almost always pushed out of the discussion

The anti-vaccine movement has built its popularity on celebrity support for the discredited former gastroenterologist, Andrew Wakefield, who falsified data to suggest a non-existent link between vaccines and Autism in order to explain a non-existent Autism "epidemic."  (Wakefield embellished the stories of the subjects of his study to make them fit his theories, and the apparent increase in the prevalence of Autism is largely a function of increased awareness and expanded diagnostic criteria.) That movement relies heavily on damaging and pathologizing descriptions of Autism, combined with junk science, to build its base.  One of the movement's leading voices, Robert F. Kennedy, Jr.  speaks of the "catastrophic tragedy of autism which has now destroyed the lives of over 20 million children and shattered their families." Kennedy is now in talks with the President Elect about launching a national commission on vaccines and Autism.

Now, I know that not all people who oppose or question current vaccination protocols subscribe to Wakefield's theories or cite Autism as a reason for their position.   And my own views on vaccines are complex (I think some vaccines are potentially lifesaving for most people and that with others both the benefits and the risks are relatively small and that in almost every instance people should have a right to refuse any medical intervention that they don't want.)    But when Autistic people are saying that the anti-vaccine movement's depiction of Autism as a horror to be prevented is hurting us, the compassionate response is to acknowledge that pain, not to push past it.

Suicide is one of the leading causes of death of Autistic adults -- for much the same reasons that it is one of the leading killers of Queer and Trans people.   We live in a culture that every day in dozens of ways shows and tells us that there is something wrong with our existence.   If we move or speak in the ways that our neurobiologies compel us to, we face discrimination, ostracism, and violence.  Yes, some of us are able to force ourselves to hold our bodies and craft our words and even move our eyes and our faces in ways that are more comfortable to the majority -- but the price is high in terms of the stress of constantly monitoring our every word and gesture, living in fear that our performance will slip, and the internalization of beliefs that it is not okay to make too much or too little eye contact, or to shake and rock to discharge excess energy running through our nervous systems, or to speak in language that is too complex or too simple or that doesn't use words at all about things that are too childish or too heavy or too esoteric for too long.   We interact with systems designed to meet other people's neurological needs and if we express our difficulties with them or ask for changes we are seen as deficient or needy.  

Personally, I live in fear that a trip to the bank will leave me overhwelmed to the point where I become agitated and begin to shake and lose speech, and that a frightened bystander will call the police and the encounter will escalate into violence.  It happens to Autistic people every day.   Not because we are Autistic.   But because the culture we live in only accepts one way of communicating and one way of processing sensation and emotion.    The things that make it difficult for me to live in this culture are also the things that give me the capacity to engage with plants and gods and history in unique and beautiful ways.   But for large stretches of my life I lived in a world that emphasized my disadvantages and trivialized or ignored my strengths.

Now imagine living this reality.  And imagine being a fifteen year old in a community where the only time the existence of Autistic people is acknowledged is when non-Autistic people are debating vaccines.  And the only thing you ever hear said about Autistic people is that our existence is an abomination to be prevented.   How do you think this would make you feel about yourself?

If you are part of the movement against mandatory vaccination, instead of telling me that you are not doing it because you hate people like me, I would love it if you would take the message to others who are opposed to mandatory vaccination that Autism is part of the natural variation in human neurobiologies that has existed as long as our species has and, like every other variation has its challenges and its gifts.   Please tell people to stop pathologizing us.  Your voice is more likely to be heard by those within the movement than mine.  

The pro-vaccination camp has not done much better by us.  Yes, those in favor of vaccination do frequently point out Wakefield's fraud.  But they seldom contest the idea that their is something wrong with being Autistic.   Rather than saying that Autism is not a tragedy, they tend to say vaccines do not cause tragic problems like Autism.

If you are a vaccination advocate, when you are responding to charges that vaccines cause Autism, please talk about the beauty of Autistic minds besides refuting the false science of your opponents.

And whatever camp you fall in, when Autistic people tell you that we are tired of being a political football in your debate, please stop and listen instead of going back to your script.


Sara Sionnach Skye said...

"We live in a culture that every day in dozens of ways shows and tells us that there is something wrong with our existence. If we move or speak in the ways that our neurobiologies compel us to, we face discrimination, ostracism, and violence...We interact with systems designed to meet other people's neurological needs and if we express our difficulties with them or ask for changes we are seen as deficient or needy."

Well stated, and getting to the heart of things. For a long time, I have felt that much of the autistic difficulties and problematic 'symptoms' experienced have more to do with unforgiving and mercilessly rigid social frameworks than autism itself.

My neurodivergent worldview has been a blessing in so many ways - it has allowed me to experience rich, deeply satisfying relationships with my home planet and fellow Earth 'housemates', and to shape those relational understandings into a productive and meaningful career path for myself. The difficulties I face are almost always in response to the frameworks I have to make that career path - and indeed my whole life and the very fabric of my being - fit into. Having to prove myself as capable despite my neurology time and again is demoralising in the extreme - in no small part because it is my neurology that makes me so well equipped to do the work that I do. Without it, I would be a far more impoverished person than what people tend to currently view me as because of the words 'autism' or 'Aspergers'.

So who cares if I need to work with the fluorescent lights in my office off so that the buzzing and flickering doesn't interfere with my focus or sting my eyes and neck? Or the hyper focus utilised in doing my job well uses all my energy for that day, so I won't be participating in work social events that should have no influence on how I am treated or respected professionally? Or that I can't always wear the most trendy, classy clothes because they hurt my flesh, fingers and ears so badly, when a perfect alternative exists in my simple, comfortable, 10 year old garments? These are such minor things compared to what autism gives me the skills to offer: sensory sensitivity towards the more-than-human world, music that can be literally viewed and felt, an intense focus on tasks that results in thorough and efficient work, sensitivity towards narrative and affective patterns that enable me to relate and connect events, beings, and circumstances in imaginative, and sometimes innovative, ways.

None of this should matter, nor should it paint me as 'deficient' in any way. But it does, and that is a society problem, not an autism problem.

Amy Shea said...

Thank you for writing this.

Jen said...

Thank you for your extremely well-articulated post! It plucked at all the right heartstrings, and I will make sure that I and others around me check ourselves during this debate.

Thank you, truly.

Bonice said...

Thank you for sharing this Sean.

Iris May said...

appreciating u for being willing to be u, keeps me going some days.

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Jessical Alba said...

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