Thoughts on Autism Research methodologies and ethics

This was originally a comment posted to a Spectrum article on Medications that alter social behavior.

Note that the comment is no longer there, it is their prerogative to moderate their own site of course.  It was highly critical of current ethical standards or lack there of, some would no doubt would feel threatened by changes to their research environment.  However,  I will not be silent when researchers profit on lack of meaningful accommodations and the resulting poverty it causes.

General thoughts on this and other popular forms of research.  I’m going to give you a few quotes from someone that rejected relationships to pursue his special interest.

“I do not think there is any thrill that can go through the human heart like that felt by the inventor as he sees some creation of the brain unfolding to success… such emotions make a man forget food, sleep, friends, love, everything.”

Sounds like a terrible social disorder among other things.  Here’s another:

“Be alone, that is the secret of invention; be alone, that is when ideas are born.”

This vitally important for growth when a mind depends on intense focus and pattern recognition in order to learn. One needs time to sort through it all when one breaks things down into smaller parts and thinks in a more literal way, considering every possible literal meaning before considering the context of the present situation.

The quotes come from Nikola Tesla, had anyone tried to fix his “deficits”, our modern electrical world would not exist.  It does not mean everyone becomes an inventor, it simply means that in order to learn your mind functions like an inventor’s due to pattern recognition abilities.  Granted one can stay focused on the same thing for a long time because one is observing something slightly different each time.  Indeed it is a challenge to simplify complex context for Neurotypical communication and often backfires without writing a book.

The fact of the matter is, many of us are willing to be highly social about specific topics but not in a generalized Neurotypical way.  That’s assuming we haven’t been utterly stifled by attempts to fix us as children.  These days entire cultures of forming from various interests, cult fandoms in particular are curious.  “Binge Watching” used to be considered a deficit of some sort as well.

Back to the the point I hope to make.

In all the attempts to medicate me, and my own efforts to condition myself to be socially “acceptable” to Neurotypicals, All I had truly accomplished was to condition myself not to use my innate thinking and pattern recognition abilities.  So much so that I did not become capable of self advocating or articulation until my 30s when I realized I was rejecting my own nature; as were my doctors. Prior to that I rarely communicated anything beyond my basic needs.  That kind of attempt to conform oneself is also a major cause of social anxiety and suicidal ideation.

If you were to offer this treatment to me today, I would likely flush it down the toilet.  It is a mistake to seek to conform others to average standards of the majority even if the desire is to “help”.  Respect for innate differences and individuality must come first.  That seems to be a shared instinct among most humans, the desire for sameness in order to feel a sense of security.

The topics at the UN time and time again are that basic human and civil rights are not being met, discrimination is the rule rather than the exception,  that science is being used to undermine our basic dignity, suicide and unemployment rates are high.

That is because we are not respected as we are, and are instead promised that we’ll be fixed so we can be included.  How many researchers are even considering the psychological consequences of peer rejection on that scale when it comes to young minds? If you survive peer rejection in school, you then graduate to peer rejection from all of society. Many people will still be nice only because they believe one day you’ll be acceptable to them through cure or treatment, the extent of that kindness often ends when you ask those people to fight for your rights.  Then there’s the conditioning to view oneself that way that is also extraordinarily stifling.  Social ability also isn’t going to mean much if you’re already struggling with PTSD.

Accommodations will continue to be scarce so long as the overwhelming belief is that you must conform others to accepted repetitive “One Size Fits All” Neurotypical patterns.  The “support cliff” still exists because we choose to keep it around, usually motivated by constantly renewed fear and alarmism.

I’d be curious about this study, if it wasn’t so focused on “social features” and instead looked at the entire complex individual.  Does improved social ability come at too high a cost in other areas? The human brain is a complex system, if you only focus on one aspect and not all the complex interactions and balances involved you are metaphorically poking around with a stick.

I find most research unethical regardless of intention because it does not even begin to consider psychological consequences which are required in order to respect human, civil and individual rights.  I also find many forms of research use narrow statistics to attempt to define human averages that can never hope to realize greater complexity.  These statistics are not being derived from innate understanding, but from external observation and very crude guesswork.  I do believe medication has it’s place, but at the same time many of these problems can be resolved with greater respect and inclusion/accommodation of human diversity;  without which, the end result is xenophobia.

One more Tesla quote: “Today’s scientists have substituted mathematics for experiments, and they wander off through equation after equation, and eventually build a structure which has no relation to reality.”

Meanwhile, in this context rights continue to be neglected or outright violated. Work with our differences,  not against them.

Research without rights or consideration for psychological impact leads to both ethical and moral conflicts.  Ethical research can not take place under those conditions, what we are left with is fear based research.

“Some” geneticists find it appalling when genetically deaf people choose to procreate and have genetically deaf children. Yet there are multiple generations of successful deaf people and a deaf culture that isn’t interested in being viewed as something lesser to be fixed.

How far will researchers go to “fix” what they consider broken?  How much money will be spent on that instead of reforming ethics and including the people you seek to fix?  It would be of far lesser concern if it did not impact and directly compete with our rights and dignity.

Beyond that,  it is frustrating to see researchers perplexed or excited by the behavior of Genetically Modified Rats, Mice or Monkeys that are intended to “Simulate” Autism.  Behavior which is trivial to understand when one possesses innate understanding of those differences.

Despite the narrow deficit based focus, even genetic research is starting to validate the fact that much of what is different about us is part of human variation.  With what was once thought to be Autism specific genes being found to be linked to all human beings.  Our variables simply diverge more than the average population.

Indeed the average population isn’t so average, the only time attention is called to differences/difficulties is when one can not or struggles to blend in.

Some Neurotypes have exceedingly high social ability that they can easily use to manipulate or exploit others, particularly in job environments.

I’ll certainly admit to increasing anger when I see more and more disabled people in general discriminated against.  I also have a great deal of anger because how I was treated left me in a poor position to support my increasingly disabled senior parents despite my second chance at life.  You always think you have time, until suddenly; you don’t.

Deficit and fear based research is going after what you expect to find,  when it increases our understanding of humanity it tends to be by accident.  Might as well throw in another Tesla quote.    “The scientists of today think deeply instead of clearly. One must be sane to think clearly, but one can think deeply and be quite insane.”

Ignoring or excluding relevant variables and complexity is illogical, as is excluding lived experiences that contradict the statistical averages that research is being based on.

-Chris “Stargazer”