Friday, December 29, 2017

An Open Letter to Autism Research Scientists

This open letter comes about because I've been reviewing research applications for the DOD's autism research grant program.  As I am restricted from putting my precise feelings to paper by various guidelines, I'm going to settle with summarizing them here, and then spend the time formatting my objections according to the government's guidelines.

I can't, according to the terms of the job, discuss anything specifically found in these applications I'm reading... but I don't have to, because I have a lot of things to say about the general content and focus of them... 

Dear Autism Researchers,

Please, please, please stop using overly obtuse language in your research papers and applications.  I recognize you have specialized concepts to convey, and those things have names, but there's a difference between conveying concepts and using words like "elucidate," "bioenergetics," and "sensorimotor" all in the same sentence.  There is also a difference between trying to convey a concept quickly, and inventing or using unnecessary acronyms.  Seriously, sounding like you swallowed a dictionary and are now throwing it back up onto a paper does not make you look smarter.  It makes you look pretentious.  It makes you look like your ego is the only thing that matters to you, and your research is just a vector for showing off.  This is triply true when you're writing a lay abstract, which is meant for non-scientists. 

Oh, I know, "It's just the style of how papers are done!"  Well, let me ask you this: Are you, or are you not, people dedicated to advancing human knowledge and discovering new, better, different ways of doing things?  If so, why are you making it harder for everyone, including other researchers, to understand you?  You should also keep in mind that your research is no longer sequestered in your hallowed institutions and universities.  Parents of children on the autism spectrum read your papers, and autistic people like myself do as well.  These are our lives you're researching.  We want to understand what you're doing, too, and we shouldn't need a PhD to do it.  Stop making it harder for us!  Autism may seem like an intellectual puzzle to you, but it's a difficult reality for us, and the more we can work with you and your research to improve the world and our lives, the better.

I've said we need you, and that's true.  Researchers are the driving force behind progress toward a better world for everyone.  But you should also keep in mind that you need us.  Talk to us.  Learn from us.  We know autism like you never will.  While you fiddle with your animal models, your mitochondria, and your genetic patterns, we are living and suffering and thinking about all of it.  We have ideas for research, too, and you are missing them by spending all your time in laboratories, with each other, in academic echo chambers.

One very specific idea most of you keep missing is that the question "what causes autism?" is now unimportant when placed beside the vast and desperate need for the answer to, "what helps people with autism live better?"  You've had more than 20 years to research "what causes autism?" and the underlying mechanisms, genetic factors, environmental factors, etc.  You still don't have solid answers.  The average age of someone on the autism spectrum is now 18.  That is the age where we either start into the real world, or we start falling through the cracks because our support services through school ended.  Guess which of these options happens a lot more?

Quit trying to find out what causes autism.  We, the autistic community, already exist with autism.   Even if you found the "what causes it" tomorrow, it won't undo our suffering, or improve our lives in any real way.  We care about getting effective therapies for our problems.  We care about having good social supports, and programs to help us get jobs and have social lives.  I will literally yell this from rooftops if I have to, and some of you are going to get an earful when I get to Washington D.C. this January.  Try to listen.  I will try to be polite and listen to you in return.

Speaking of politeness, could you please try not to refer to autism as a disease?  I, personally, am fine with the word "disability," though it misses the fact that autism has also given me strengths.  I've seen some researchers use the phrase "Autistic Spectrum Conditions," which I found interesting, and perhaps that would be the most respectful way to refer to us.  You see, while most of you are busy training magnifying glasses on all the disabilities and problems autism can come with, we've built our own culture and understanding of autism.  You just haven't been listening to us.

To some of us, autism is not an ailment we suffer from, it's a condition that is fundamental to who we are.  We've built communities around it, and understanding it and ourselves.  We tend to have some good traits in common, such as honesty.  We tend to value expertise and skill.  You might, in fact, consider autism our cultural heritage, in that sense.  Think of it like how African American people have a cultural heritage.  So some people, myself included, get a bit irate when all of that is dismissed as a "disease."  Particularly if the word "cure" comes into the picture.  "Healing" and "reversing" and "erasing" are really not much better.  Please be respectful of the people you're trying to help. 

Sarah Frisch
The Realistic Autistic

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