Autism research progress ~ hopeless without anecdotes?

Autism research is stalemated in a sorry state.  The establishment of researchers, mental health professionals, neurology specialists, puzzle piece groups, most parents of autistic children, and so on, seem to be stymied in a zero-sum game. 

I say “zero sum game” because for every discovery made, more questions arise.  For every mystery solved, more enigmas emerge.  For every new development … developed, the the collective understanding drifts further away from true progress.  For every gain, there is a loss.

The scientific community appears to be making discoveries, solving mysteries, and gaining overall, but I suspect that it’s an illusion.

An illusion and nothing more.

Sure, they’re uncovering mutated genes, in utero connections, environmental associations, hormonal abnormalities.  Sure, they’re cataloging metabolomics, maternal disease states, paternal sperm ages, heavy metal levels, autoimmune antibodies, and whatnot.  Sure, they’re conducting brain scans, blood tests, stool tests (ew), cheek swabs, and the like.  Sure, they’re developing behavioral therapies, hormone replacements, brain-based protocols, and tablet apps.

I’m aware of all that.

It doesn’t mean that anyone’s closer to finding the truth.

Because the truth is, research has been veiled by several factors, one of which is that Asperger’s/autism spectrum configurations aren’t truly pathological.  They’re a variation on a theme, derived from sources that nature has seemingly purposefully obscured from our view.  Nature appears to want our neurotype to remain a mystery.  Maybe there are some mysteries that have minds of their own and would prefer not to be unraveled.

There’s another reason why the scientific world may not be reaching the holy grail they’re searching so feverishly for.  There is indeed a true missing piece to a real puzzle: our own firsthand stories.  The input from the fountainhead.  (Yes, that would indeed be us.)

The research community likes to shun and dismiss anecdotes as “untrustworthy”.

Personal testimonies are shunned as “unreliable; merely anecdotal” and are routinely disparaged because “they’re not open to verification because they’re subjective.” [1]

That might be true, in some cases, but the truth is, “some anecdotal evidence can be both empirical and verifiable.” (Emphasis mine) [2]

That might be especially true in the case of the Asperger’s/autism spectrum, because really–what’s more trustworthy: the firsthand accounts given by the source/subject themselves, or the potentially biased and misinterpretation-prone observations made by outsiders who have no clue as to why they’re seeing what they’re seeing?

How else would they ever find out?  How else would they ever learn more?  They, too, lack a theory of mind of sorts; they can’t possibly empathize with us any more than we can empathize with them.  Thus, they could hardly ever hope to understand what might actually be going on.

We, the people on the Asperger’s/autism spectrum, could indeed prove to be a valuable source of crucial information, information that could serve to decode some of the mysteries of autism.

But so far, the general vibe of the scientific community regarding autistic people has been: don’t go there.

Temple Grandin’s amazing book, “The Autistic Brain”, goes there.  In part of her book, she tour guides the reader through the concept, describing it in plain language, touching on several different scenarios–the restaurant, the grocery store, the fluorescent lighting, and so on.  She describes two seemingly opposing behaviors that autistic people tend to exhibit: shutdown and meltdown (although she refers to these as “tantrums”, which I respectfully assert is a misnomer).  She accurately concludes that these two apparently contradictory behaviors are, in fact, two sides of the same coin: neurological overwhelm engendered by excess sensory stimulation.

And yet, all the outside observer perceives is a shutdown, which is prematurely attributed to standoffish coldness, or a tantrum, which is rashly blamed on a behavioral problem or another enigma.

And so, the research studies begin.  The protocol is designed, the subjects carefully selected (which, in itself can pose a problem, despite its scientific soundness).  Genes are indexed and metabolomics are tabulated.  Databases whir and rumble to life as massive amounts of data are transferred.  Beam it up, Scotty.

But rather than amassing all of these bits and bytes of data, piling them into supercomputers, crunching them through spreadsheets, and whatnot, wouldn’t it be more useful to take an old-school, low-tech approach and put the clipboards down, turn the hard drives off, and open their ears?

Rather than finding aberrant genetics and blood levels of this or that or measuring the levels of different bacteria in our stool, wouldn’t it be more constructive to sit down and ask us a few questions and actually write down our answers?  Many of us are ready, willing, and able to talk, after all.

Because as it stands now, we’ve got 1500 possible genetic associations with autism.  A loose intestinal microbiome profile has been formulated.  Methylation functions have been assessed and noted.  Brain scans have been performed.  And yet…

Where has that gotten anyone?  Where has it gotten the scientists?  Where has it gotten the autistic people?  What benefit has that brought anyone?

I understand that science and its research are works in progress.  Knowledge is always growing, gathering, accumulating.  We’re becoming exponentially more knowledgeable by the day.

But are they truly any closer to helping the existing autistic people live easier lives?  Has the world genuinely made any strides to make itself a more livable and inclusive place for all?

We may know much more about the autistic brain than we ever have, certainly more than we did just 10 or 20 years ago.  But are people on the Asperger’s/autism spectrum any better off than we were 10 or 20 years ago?  Are we living more satisfying lives?  Are we living our dreams, doing what we truly want to do?  Are there enough supports in place?

Or do we still feel like we’ve been dropped off on the “wrong planet”?  (Yes, for many of us.)  Do many of us still have to swallow handfuls of pills just to avoid sinking into a profound depression?  (Yes to that, too, for many.)  Do many of us still flinch in response to a world turned up too loud?  (Hell yes.)

Given the state of the scientific union right now (not to mention the state of the lives of many people on the Asperger’s/autism spectrum), I feel compelled to register a plea–or a roar–to the scientific/medical research establishment (and their supporters) to set aside the obsession with finding biometric associations and instead, sit down with a notepad and open ears…

…and talk to us.

Ask us about our experience.

Ask us if we can describe what we feel.

Ask us what we think.

Ask us how we perceive something.

Ask us about our challenges.

Ask us what we need, what would make our lives easier.

Listen to what we say, with open minds.

Write it down.

Publish that.

Please, call it “interviewing” instead of “studying”.  When you’re finished interviewing one Aspergian/autistic person, don’t stop there.  Interview another.  Because if all you have is one or a few anecdotes, that’s when the personal testimony (AKA “case report”) can more easily be called into question.  There’s a larger chance that those anecdotes may be unreliable, since one drop does not an entire ocean represent.

Firsthand accounts gain validity as they grow in number.  So, it’s time to start adding to those numbers.

Talk to us.  Write to us.  Email us.  Message us.

Write down what we say, not just what you see.

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References:

1. Temple Grandin, “The Autistic Brain”, page 76 (available on Amazon)

2. “Anecdotal Evidence“, Wikipedia entry