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.

***

This is one of my more popular posts!


References:

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

2. “Anecdotal Evidence“, Wikipedia entry

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27 Comments

  1. I have to admit (no disrespect to you or anyone else) that I really don’t buy into the whole notion of neurodiversity nor do I really buy into the concept of neurological orientation. To me it seems like a false comparison to compare personality disorders/mental illnesses/whatever to sexual orientation or gender identity. Granted, we don’t fully understand what causes deviant sexual attractions or gender dysphoria but I’m just not really convinced that it’s an accurate comparison. Yes, I do know that these things are no longer classified as mental illnesses now that we know more about them but until we have more solid science to back up the concept of neurological orientation I’m not really ready to climb onboard that bandwagon. Of course, I’m a skeptic at my core.

    That said, it is possible that my view is tainted by my own life circumstances and that my experience isn’t like those of most others. So be it. I wouldn’t be surprised if, at one point, sexual deviants were denied FAA medical certificates. I think more research is needed, but it should be balanced with support to make our mostly miserable lives less miserable (let’s face it, most of us on the spectrum have miserable existences regardless if the problem is with us or everyone else). Of course, as an antinatalist (one who believes sentient existence is a net negative and that it would have been better never to have existed at all) maybe that colors my perception as well. Who knows? Maybe I am wrong. Maybe I’m just too drunk to tell at the moment. LOL!!!!

    Liked by 2 people

    1. Inkedautist, “To me it seems like a false comparison to compare personality disorders/mental illnesses/whatever to sexual orientation or gender identity” Since no such comparison was made, yes, it’s possible your view is … a bit biased in this particular instance. A friendly suggestion: reread the post when you’re sober.
      . . . . .

      I would note first, that psychology is the least scientific of the sciences, since it deals with a subject that by its nature is rarely repeatable and verifiable. Second, anecdotal evidence is, in fact, more seriously regarded than in the past. The problem is that no number of personal anecdotes is likely to lead to a straighforward answer when it comes to psychological problems. Some of the issues which have not been fully answered and remain in dispute are IQ, sanity and insanity, manic-depression, etc.

      Liked by 1 person

      1. Well the point remains that most on the autism spectrum glorify the condition rather than view it as some sort of a disorder and dismiss research toward treatments/cures as a threat to their existence. That’s what bothers me the most.

        Liked by 1 person

        1. @inkedautist
          “Well the point remains that most on the autism spectrum glorify the condition rather than view it as some sort of a disorder and dismiss research toward treatments/cures as a threat to their existence. That’s what bothers me the most.”

          I agree that there’s too much glorification, but you go to the other extreme. Some aspects are, or can be, serious disabilities that define and limit a life. Others can be lived with if you take reasonable approaches. And some are advantages. It’s the *type* of scientific approaches that are a threat. How to reverse serious disabilities would be a blessing to many people. But the “cure it all or prevent it” mindset wants to throw out the baby with the bathwater.

          Liked by 2 people

          1. Well unfortunately for some of us throwing the baby out with the bathwater is the only way we’re going to have any sort of quality of life. Sure, maybe I am the rare exception to the rule, but just using me as an example: my dream job is closed off to those on the autism spectrum, regardless of severity. The FAA does not tolerate any sort of mental health diagnosis so I cannot live my dream to be an airline pilot. As such, I’ve been stuck in jobs I hate and have lived almost half my expected life expectancy.

            To expect a seismic shift in societal attitudes overnight is delusional at best. As we’ve seen with the LGBTQ+ community, such shifts take decades and even centuries. A lot of good it does me though, huh? My entire life will be nothing but misery because there is as of yet no cure available to me.

            All that said if a cure were to be discovered I’m not about forcing it on you or anyone else. That should be a personal choice (kind of like gender reassignment surgery). Just because I’d choose to be cured, even at the expense of giving up increased intelligence and the like, doesn’t mean I’m saying you’d have to choose the same. All I give a flying fuck about is having a choice, which so many who jump on the ND bandwagon don’t seem to think we should have that option available and for whatever reason think research toward treatments/cures should be halted and abandoned completely.

            Liked by 2 people

  2. There are still so many people who don’t believe that ASD, particularly “high-functioning,” is even a thing. Interviews would be useful not only for the scientific community, but for non-scientists as well. Though one good thing to come out of research in the past little while is the growing recognition that girls experience it in different ways than boys. Yet, in our quest for answers, it still seems that male criteria are still too rigidly applied. Hearing the voices of girls and women really helps those of us looking for answers.

    Liked by 1 person

    1. This! Agreed with all you wrote. Thank you for your comment, by the way! 😉

      Thank you especially for specifically mentioning how the interviews would be helpful for non-scientists, too. My brain spread from there (lol 😉), to include therapists, psychiatrists and general practitioners, and even puzzle piece organizations. Plus many other entities. Wouldn’t it be wonderful if they just sat back and gave us the mic? I’m pretty sure a lot of us would feel differently toward a world that did that 🙂

      Like

      1. ❤ I think so, but you can tell me that, anytime. Now that I've acquired the skill of accepting complements, it's my pleasure 🙂 Took me decades, but I can finally do it! ❤

        Liked by 1 person

  3. Yes, indeed. This has been my heart’s cry for so long- talk to us! It’s astounding how little weight is put on actual, firsthand experiences. Instead, people research, examine, and bicker among themselves. What a waste! Of course, I think so much depends on the motivation-do they really, really want to understand and support or do they only seek out answers to eradicate our existence? The ones who really want to understand are the ones I find receptive to my input. The rest
    either patronize or look at me like I have two heads. 🙂

    Liked by 1 person

    1. Ahhh, yes, the good ol’ patronizing 🙄 Gotta love that 💐 As if we’re not sound-minded individuals to be taken seriously! Gah 💓 I first got the inkling when I was reading through the characteristics early on. I started thinking to myself, “well, I might SEEM to lack empathy or be distant, but that’s not the whole story” 💙💚

      Liked by 1 person

  4. It’s important to tease apart the different sorts of scientific research. Research into human genetics is going to continue, of course. One recent study I read noted that mutations that in certain combinations can be expressed as autism and other things that can be considered an individual disadvantage are the same mutations that support increased cognition. So collectively they are evolutionary advantages which is why they’ve been retained. I do think it’s the beginning of the end of the idea that there will be some sort of genetic “cure” for autism. (Hopefully.)

    Then, in psychology and social sciences, there are many different ways to construct studies. They all have advantages and disadvantages. So everything ranging from controlled studies of limited behaviors to in depth individual analyses to ethnographic immersion can be valid and helpful (or not, but that’s a different issue). I think we need a healthy mix of all of them from a psychological perspective. And since autistic people live in a broader culture, I think we need more studies from a sociological perspective than there are currently. (At least, I haven’t found a whole lot at this juncture.)

    Liked by 2 people

    1. Absolutely!! Agreed to all. 👏🏼👏🏼👏🏼😊. I admire the hell out of your comments 💖

      Yep, perusing PubMed, I’ve seen that many of the genes involved are indeed common mutations 👍🏽😊. We’re talking upwards of 30%+ of the population in some cases. It might be a case of multiple genes involved, each one being common, and coming together in particular combinations. And that’s probably not the end of the story; those genes by themselves might not do much; they might have to be expressed, or turned on, in order to have their effect. It would be absolutely wonderful if that could end the quests for cures.

      (Empathizing with those who would rather not be Aspie/autistic, because they truly are having a tough time diagnosis can throw barriers in the way of fulfilling some dreams, I offer up the possible solution that neurodiversity really begin to take hold, postulating that the autism spectrum is not a pathology nor a mental disorder, and should not ever be discriminated against; and perhaps, at least for several generations, we become more of a protected class.)

      I would love to see more constructive research done, especially in a sociological bent! 💜

      At the very least, the scientific community needs to approach the spectrum with a lack of bias. I see excessive, blatant bias in the research, beginning with the very notion that the spectrum is a disorder. I think that most of us are just fine until we have to interact with the world on a regular basis, and we get hurt by that world. That’s when some of the common co-existing conditions (depression, anxiety, etc) start to take root. Being treated as “lesser” every day definitely takes its toll 💞💞

      Thanks again for adding your thoughts! You’ve obviously stimulated a lot of thought 😊🌺

      Like

  5. Hi SW, excellent post. Let me just add that the more I’m getting deeper into the major differences between Autism and Asperger’s, the more understand that the main reason for the clear lack of progress in the field, has been actually created by removing Asperger’s from DSM 5. Only the ignorant would fail to understand that this has been done arbitrarily, in order to suit interests beyond my momentary understanding. Yes, it’s comfortable to throw highly sophisticated Asperger’s intellects, with complicated child development and gender differentiation into the same pool with individuals elsewhere on the spectrum, because the time to diagnose will be reduced, and the after care generalised.
    But does this further research for either Autism or Asperger’s? Absolutely NOT, because research mandatorily implies a narrowing down of symptomatology, not generalising.
    The only chance for change comes as you brilliantly state, from individuals with either clear Autism or clear Asperger’s as still obviously separated by the ICD-10/F84.5 who will take a step further in studying and researching their own conditions.
    I’m doing my part, as this year I’m graduating a Foundation Degree in Science Mental Health, and next year I’m already continuing with a Post Grad. in Asperger’s and Autism at Sheffield Hallam University.
    How’s that going to further anything? I have no idea yet, but neither did Temple Grandin when she started her own journey.
    And by all means, I guess I would understand more of myself and others alike, than by doing nothing…
    Take care 🙂

    Liked by 4 people

    1. Omg hi!!! It’s so nice to see you, my friend! 😊😊😊. Funny that I see you today; you’ve been on my mind recently 💞

      Yes, I wholeheartedly agree with you! 👏🏼👏🏼👏🏼

      In fact (I think that even though we haven’t had contact in a little while, our brains are probably still synched up! Lol 😉😊). I’ve had the basic idea for a post exactly along these lines, been chewing on it a little heavier over the past few weeks, and I’m gearing up the post relatively soon (not quite sure when yet).

      So how’ve you been, anyway? Please feel free to contact me through my contact page in the blog menu if you like; I’d love to catch up! 💙

      Liked by 1 person

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