Asperger’s / autism, genetics, & MIT ~ Part 1: Consent?

Upon learning that the Massachusetts Institute of Technology (MIT) had established a shiny, spankin’ new $20-million-dollar autism research wing, I felt the color drain from my skin a little.

And, true to (my) form, the rebuttal ideas started to swarm around in my head, picking up speed and reaching an intense fervor, and shooting out in several different directions.

Over the course of the next several days, I hurriedly typed notes into my mobile, notes of thoughts as they came to me.  Because this happened in multiple sittings, the notes ended up all over the place in terms of topics, opinions, and analogies.

So what I’ve done here is to turn my cognitive chaos into a mini-series of posts, each highlighting a different subtopic.  Here is the first subtopic/theme: Consent.

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You know the saying: “the road to hell is paved with good intentions”, yada yada.

What I’m concerned about is the “road to hell” part, and MIT’s new autism research wing is the construction company.

Their self-posted announcement article is pretty clear: they “will support research on the genetic, biological, and neural bases of autism spectrum disorder”.  They even go on to (proudly) announce that the resources received from the primary investors will “help foster collaborative research efforts to erase the devastating effects of this disorder on individuals, their families, and the broader autism community”.

Well hell, file that one under the rapidly-thickening “No One Asked Us” hashtag.  I must pause here to acknowledge that there are indeed a few folks within the Asperger’s/autism spectrum community who do desire a cure in order to be government-eligible to live their dreams, and I absolutely acknowledge and respect their stance.  The number/percentage of these folks may be small, but their circumstances and wishes are not insignificant.  They, too, have a(n equal) right to their perspective.

However, the overwhelming majority of us (in my experience so far) don’t want to be cured.  And “devastating effects” is not exactly how I’d describe my Asperger’s/autism; rather, it’s more like how I’d describe the impact of the rest of the world on me.  I also don’t see my neurological orientation as a “disorder”, any more than I would perceive a neurotypically-oriented person to have a disorder; both (all) types have their strengths, both have their impairments, and both serve their purpose.  The world needs all kinds.

And let’s call this what it really is, anyway.  We’ve been down this road before – both in history, and in the earlier days of this blog.  It’s not a new idea.  But I wish it could become a dead idea.  You guessed it: eugenics.  And it’s not a subtle desire; it’s a blatant one.  And once researchers start conclusively nailing down the various gene sets behind our neurological orientation, you can bet they’ll start developing technology to neutralize them or splice non-autistic genes in where the autistic genes would have been.

Eugenics by any other name or flowery PR-washed vocabulary is still eugenics.  Its word-cloak doesn’t change the fact that it’s deplorable and inexcusable.  It doesn’t change the fact that we’re talking eradication here.  Maybe not eradication of born, live, existing people (at least, not yet), but eradication of genetic lines for future generations.  (And who knows if that will indeed spread to the eradication of born, live, existing people or not?  Fervor, given a little power, has had the historic tendency to gain momentum, resulting in unimaginable, irrational movements and tragic outcomes.

Regarding to MIT’s new project, we’re not talking (yet) about being able to alter the destinies of already-born adults here; we’re talking about the prevention of the birth of future autistic children.  That’s what will probably come first. 

We’re talking about preconception–where the egg meets the sperm.  I’m wagering that that will be the first stage of this research for two reasons:

1 – Logistics – Altering genetics before conception is probably easier than trying to do it after conception. 

2 – Agenda – Neurotypical parents have more shout, clout, and sympathy than autistic people (children or adults) do.  And they want to be heard and addressed first.

Let’s briefly explore these individually.

The most practical part of the preconception spearhead is likely to be logistics–the probable realistic timeline of scientific capability–so let’s explore that first…

I imagine that altering genetics of eggs and sperm before they have met and begun to unravel the life code is probably much simpler than trying to perform this task on an already-existing human being.  “Sterilizing” eggs and sperm of autistic genes is likely to be a fairly wham-bam-done procedure.  With eggs and sperm, there’s only one half of a person’s genetic code, which simplifies the palate.  A little shot of gene therapy here and a little “vaccine” of antibodies there, and poof!–a set of parents might be able to be rendered “autism-proof”, and deemed “safe”, given the green light to go ahead and “TTC” (parent-lingo for “try(ing) to conceive”).

Not only would it be a fairly noninvasive procedure (not any more invasive than, say, a vasectomy, tubal ligation, or in-vitro fertilization), but since anyone, no matter where they reside on the pro-life/pro-choice issue, would agree that life has not yet begun since the child has not yet been conceived, the medical bioethics are easier (for most people in general) to swallow.  After all, eggs and sperm aren’t people yet.  They don’t have a voice at that moment in time.

This genetic manipulation would assuredly become much more challenging (scientifically and ethically) once a child has been conceived.  Many argue that life begins at conception, so if that’s true, we are now talking about an individual human being, a unique entity with their own equal rights.  We’re also talking about twice the genes; a sperm and egg, each with their own single set of genes, have come together in a DNA mosh pit.

And after the child has already been born, I imagine that swapping one’s genes out in favor of others probably gets even trickier.  So for the adults on the spectrum who want no place on it and would opt for a cure if one existed, I’m not sure this would move them any closer to their wishes yet.

Now let’s explore the competing “agenda(s)” element…

The squeaky wheel gets the grease, and the petrified, “Vaxxed”-brainwashed neurotypical would-be parents squeak the loudest.  These future parents constitute a larger group, with more conventionally-recognized clout, than the few people on the spectrum pining for a cure for themselves (or, as is the case with so many other long-term conditions, successful management).  And because these would-be parents are neurotypical (non-autistic), they’ll get heard, listened to, and taken seriously much sooner, long before the wishes or plight of anyone on the spectrum are considered, if we ever come under consideration at all.

Those of you who have known me for more than three days know that I’m not a jerk.  I’m not ignorant or insensitive to the plight of a variety of people on the Asperger’s/autism spectrum, and you know that I support you all, no matter which way you swing on the cure issue.  That’s a personal opinion based on each person’s individual circumstances, and who am I to deny or minimize or refute that?  (I’m not.)

Generally, I’m generally a live-and-let-live sort of person (so long as one’s actions and words while doing this “Living” Thing don’t adversely impact anybody else, of course).  This, in turn, provides the backdrop for my support of an adult’s freedom of choice in practically all aspects of life, including one’s decision to remain on the spectrum or be cured.

You probably caught the operative word in the above sentence: “adults“.  I fully support the option of having an effective treatment/resolution available for the autistic adults who genuinely want one.  I have no problem with the Aspie/autistic adults who want to be cured to have such an option open to them so that they can lead a life more congruent to their wishes.  I don’t begrudge their desire for a cure for themselves.  Some people get helped, nobody gets hurt.  They’re not trying to speak for the rest of us, and I don’t want try to speak for them.  

I also don’t believe the fulfillment of their desire would adversely affect those of us who wish to remain on the spectrum, any more than a birth-assigned female’s transition to male slights or jeopardizes the other females of the world.  If someone would rather not be autistic, and they want to transition to neurotypical, I don’t think that’s a form of betrayal of the rest of us who wish to remain on the Asperger’s/autism spectrum.  By leaving the spectrum, I don’t believe they’re jeopardizing the status or circumstances of those of us who wish to remain autistic.  That might be a comparison between apples and oranges because of the dynamics involved, but try to roll with me. 🙂

Anyway, getting back on topic, with my next point: what about the future/unborn children?  The ones whose voices nobody has heard yet?

At this time, the general age of consent, at which one reaches the age of majority and legally gains the right to enter into a legal contract and make their own decisions with autonomy, is 18, at least in the US.  Before that, they’re considered a ward of their guardian, who legally speaks for them.  But these guardians (usually parents, but not always, of course), aren’t infallible; they make mistakes, too.  Their decisions are influenced by their own spheres of experience, which is almost always at least somewhat biased.  (After all, like anyone else, they’re human.)

In short, until they reach the age of 18, children don’t have much of a say at all in these decisions.  What if one of these decisions involved a significant alteration in their genetics that veers them off the path of what might have happened naturally?  I would want to have a say in what happens to me.  I wouldn’t want anybody meddling in my genome.

And it’s even trickier to participate in the discussion if you haven’t even been conceived yet.

The children who might be born autistic–where’s their voice?  When do they get to weigh in on the decision regarding their fate?  Who gets to play with DNA strands like Play-Doh?  Who gets to play god?

Because, see, as it stands, parents make these decisions.  Their intentions might be pure; they’re probably acting on what they truly believe would be best for their children.

The problem, the way I see it, is twofold…

First, their information may be inaccurate or at least, incomplete.  They might not be among the awesome parents who actually make the attempt to get the perspective of the autistic adults.  They probably still view the autism spectrum as a disorder or pathology. 

(By the way, since sexual orientations are now known to have neurobiological components, perhaps even genetic (I’m not sure yet), what if anyone dared bring up the idea of this type of “gene therapy” for being LGBT+?  Anyone so bold and misguided as to make such a suggestion would likely (and rightfully) be tarred and feathered.  Why don’t Aspie/autistic people have that same Right To Be?)

Most people (and would-be parents) don’t know better than to subscribe to the conventionally-touted mindset of “autism is a devastating pathology”.  Given that, who would choose that for their children?  Given the advent of the technology, who wouldn’t prevent that from happening?  Given the ability to tweak the genome, who would opt for or “risk” conceiving a child with those genes?  Every healthy parent wants the best for their children.  They want to give their children the best shot at life possible, right out the gate.  And in making the decisions necessary to do that, they can only draw on the information they have.

But in some cases, there can be a darker undercurrent at play.  A parent’s own semi-selfish desires can creep into the picture, perhaps unknown, unrealized, and unadmitted to, even by the parents themselves.  Raising kids is tough enough, especially in today’s complicated world.  It already takes a significant amount of energy, money, time, effort, and life-alteration.  Their world suddenly revolves around their kid. 

I imagine that most parents probably don’t want to add more complexity to their situation.  And in a rare moment of agreeing with the enemy (the medical establishment), I believe that autism is complex.  Raising an autistic child is definitely more complex.

But, as long as those child-rearing years may seem, it’s still a temporary phase of life, for the parents.

The child, on the other hand, has to live with their parents’ decisions for life.  (Which is the second problem with letting parents have the ultimate say in the decision-making).  Once made, those gene-related decisions can’t be undone.

What if the child would have been on the Asperger’s/autism spectrum had their genetic code been left alone?  And what if they, like the vast majority of us, wouldn’t have minded–or would have even liked–being on the spectrum?

What if they found out that their genome had been toyed with before they ever got to form their own opinion and speak their mind?  What if, upon finding out that their neurotype got spoken for before they had the chance to advocate otherwise, they wanted to revert their genetics to their default autistic position?

What if those children wouldn’t have minded playing alone, inventing things, creating things, and looking at the world in a different way?  It wouldn’t matter.  Their voices would have been shouted over before they had a chance to exercise theirs.  Their fate has been determine…or at least, what won’t be their fate has been determined.

I imagine it will be eons before it would be possible to undo such genetic manipulation, given not only the scientific complexity involved, but also the lack of interest in undoing billions of dollars and thousands of working hours invested and spent on making parents “autism-proof” in the first place.  The priority placed on the offspring’s desires to revert to their would-be natural state would be so low that it would likely never happen.

Either way, MIT et al’s project goes against the immense, multifaceted machine that is nature.

Which is the subject of Part 2.  🙂