A Private Matter

A debate moves through the Asperger’s community about coming out as an Aspie.  It can get fierce.  People have strong feelings on either side, with one side accusing the other of being ashamed of who they are, and the other side accusing them of preachy judgment.  

Some among us can’t understand why all of us don’t blab and broadcast about having Asperger’s.  They compare it to the coming out of gays and lesbians, and they call for Aspies also to come out of the closet, to proclaim our neurological difference proudly.  Some do.  Some work into every get-together, every casual chat, every introduction that they have Asperger’s, a cognitive condition causing them to sometimes offend people, fail to pick up unspoken social cues, tend to take things literally, avoid eye contact, and suffer touchy sensory overload.  It brings to my mind the B.C. comic strip character announcing itself as “a wingless bird with hairy feathers” to every new acquaintance.  

Not everyone overdoes it to that degree, and others don’t share, period.  For some, except for family and close friends, it’s as private as a tax return.  Those Aspies apologize for a social misstep with a brief “I’m sorry, I tend to take things literally,” or they excuse themselves at parties for some quiet time, and leave it at that.  They don’t launch into a monologue on life as an Aspie.  It’s need-to-know.  And casual acquaintances don’t need to know about Asperger’s.

I belong to an online forum for women with Asperger’s.  One member, a woman I’ll call Zelda, plants herself firmly in the first group.  Sometimes the group discussion turns to disclosure—who you tell, and when.  Zelda broadcasts to the world, and she thinks we should, too.  She’s baffled that we aren’t announcing our Asperger’s to one and all, right down to the random train conductor or drug store cashier.  She calls we quieter Aspies insecure and lacking self-esteem.  Zelda means well, and she’s right in her carved-in-stone, flaming declarations that Asperger’s should not carry a stigma.  I respect her stand for Aspie self-respect and acceptance.  But she doesn’t always grasp the mine field Aspies can find themselves crossing when they come out.

Zelda thinks of her Aspie social goofs as an opportunity to educate people about Asperger’s, and to put a face to it.  I hope it works.  But Zelda holds her mini-lectures from a safe podium.  She’s retired.  She’s outing herself in safe social situations.  And her homeland, New Zealand, is an Aspie safe haven from a world where people deemed “goofy” or “different” usually face shunning, scorn, and hostility some time in their lives.  This small island nation hosts a remarkably accepting people.  Zelda walks away from her quickie lectures unscathed.

I hope I strike a sane middle-of-the-road pose.  In social gatherings I have mentioned that I have Asperger’s, but only when it made sense.  When a neighbor who is a teacher explained teaching to children who learn differently, I shared about Asperger’s.  I’ve shared when catching up with friends I haven’t seen in years.  They were eager to be educated about Asperger’s, and they wanted to know how it has affected my life.  They wanted to know if they could do anything to make life easier for me.  But if I need to retreat to a quiet place during a loud get-together to ease my sensory overload, I don’t broadcast, “My Asperger’s is acting up!  I need to get away from you people!”  

All of us have different thresholds for how much of our private business we’re at ease sharing, and with whom.  I’ve read some Facebook status updates and thought, that was way too much information.  I did not need to know that.  I’ve struck up conversations on trains with people who unloaded their lives’ stories.  That isn’t me, and not just about Asperger’s, but about life, period.  I’m a very private person.  I like to keep things need-to-know.  Except for my closest family and friends, people don’t need to know about Asperger’s and a lot of my other life’s goings on.

Oversharing can bring more than embarrassment when you’ve shared carelessly about your Asperger’s.  That sensitive part of you isn’t safe with everyone.  If you’ve come out to someone who harbors nasty stereotypes about Asperger’s and autism, you could have offered yourself up for grief.  It could get you fired.  It could cost you a job offer.  It could cost you valuable contacts in crucial social and professional networks.  It could bring open hostility from people who feel threatened by those of us who are “odd” or “different,” those they don’t understand.  The Zeldas of the Asperger’s community need to get a grasp of that.  Their liking Asperger’s outing to that of gays and lesbians is apt, though.  In some places, coming out as gay or lesbian can get you killed.  It can get you fired, evicted, or singled out for a variety of abuses.  Not all gays and lesbians are out and proud.  They may be proud and unashamed, but depending on where they are, they may be deeply secretive about their sexuality.  

I’ve disclosed occasionally when I hoped to educate people, when I wanted to put a face to Asperger’s and dispel fear or discomfort.  But I don’t disclose unless I’m sure beyond any doubt that I’m sharing with an understanding, accepting person whose feelings about me won’t change once I’ve shared.  I share when I know they can’t hurt me, and they won’t want to.  I especially share when sharing will result in someone’s reaching out in acceptance to another Aspie.  I’m eager to share when odds are good that I’ll make another Aspie’s life easier and less fraught with hostility or shunning.  But we Aspies owe it to ourselves not to bring grief on ourselves by sharing without first sampling the social terrain for signs of nastiness.           

Doggone If I've Got a Clue

Recently I was with acquaintances who seem to think I'm off-putting for some reason.  I say that because they tolerate me and they're courteous to me, but they're cool and remote.  I've been picking up these kinds of vibrations for enough decades to be able to feel them when they're bouncing off of me.

To save my life I couldn't tell you how I've offended these acquaintances.  Maybe it isn't offense.  Maybe it's just difference they don't understand, and they don't want to make the effort to understand how or why I'm different.  All I know is that I sense in them a vague aversion to me.  They seem actively turned off by the idea of a chat with me.  Admittedly, I'm offbeat.  But shunning someone because they're a little offbeat?  I guess it's just me, but for me to rise to the level of shunning would require, maybe, a felony conviction or a proven history of thuggish behavior.  That, or really bad hygiene.  But offbeat?  Odd?  Quirky?  Eccentric?  Awkward?  Please.  Get things in perspective.

That reminds me of something a few neurotypical friends asked me when I told them I'd been diagnosed with Asperger's: What can I do to make your life easier?  Bless them.  When I thought back on the way I moved among this group of acquaintances while they tactfully sidestepped me, one way my friends can help to make Aspie life easier came to me: If we say something inappropriate or insensitive, gently and privately tell us so, and offer a suggestion for how we might have handled that conversation or situation in a better way.  Tell us you know we didn't mean to offend.  Usually, we didn't.  We just don't pick up on the unspoken social rules and cues that NTs get innately.

And speaking of insensitivity, let me go off topic.  Once upon a time in a work place, a supervisor said to me, "You're so intelligent.  What's wrong with you?"  She was every inch the NT.  Looks to me like we Aspies don't own the patent on clueless rudeness.    

To my friends who have shown me compassion, acceptance, and concern as I take this journey, you have my thanks and gratitude.  I hope your kindness is catching.

Revisiting Neanderthals and Replicants

What does it mean to be human?

I've been carrying that question around since a weekend I spent sequestered at home reading and watching movies.  I read a New Yorker article by Elizabeth Kolbert, Sleeping with the Enemy: What happened between the Neanderthals and us?  I followed that with the 1982 movie Blade Runner.  Both deal with the question of what makes us human in very different ways, and though we've been kicking the question around since the time of Socrates, we still haven't agreed on an answer.  But in Kolbert's article and in Blade Runner, the question resonated with me as an Aspie.

In  her article, Kolbert writes about the attempt of a paleogeneticist at the Leipzig Zoo, Svante Paabo, to sequence the Neanderthal genome.  Paabo is halfway there.  So far, he has discovered that the DNA of all non-African modern humans is one to four percent Neanderthal DNA.  Kolbert gives a thumbnail portrait of Neanderthals.  They had thick bones, "and probably [were] capable of beating modern humans to a pulp."  Scoring on Neanderthal bones suggests that they practiced cannibalism.  They also tended to their wounded and weak; skeletons of Neanderthals in their fifties bear evidence of broken bones healed over, and of arthritis. Kolbert then moves on to scientific matters.  After she writes about mtDNA, nucleotides and their four bases, and enzymes, she gets into specific genes that appear in Neanderthals and modern humans.  The genes CADPS2 and AUTS2 are associated with Asperger's and autism in modern humans, and they appear on the Neanderthal genome.

Cut to Blade Runner.  Rick Deckard, a blade runner, is charged with hunting down artificial intelligence beings called replicants, and "retiring" (killing) them.  They are model Nexus-6 replicants, and on sight they're indistinguishable from humans.  They're also much stronger physically and more intelligent than humans.  To prevent replicants from forming their own emotional responses over time, the manufacturer programmed them to have a four-year life span.  The replicants know this.  To detect replicants, Deckard must use a device called the Voigt-Kampff test, which measures reactions like pupillary response, and also emotional response when the subject is asked questions intended to evoke an emotional response.  Replicants show a slightly delayed emotional response, which exposes them as replicants.  The discovered replicants are shot on the spot.  Aspies also can show slight delays in emotional response.  In this fictional Blade Runner world, an Aspie would be deemed not human, and "retired."          

Kolbert's article and Blade Runner raise the perplexing matter of what it means to be human in different ways.  Kolbert reaches a conclusion.  I gasped when I read her claim, "clearly [Neanderthals] were not human."  The emphasis is Kolbert's, not mine.  Blade Runner was inspired by the science fiction book by Philip K. Dick, Do Androids Dream of Electric Sheep?  This author doesn't draw conclusions, but he shows us that the question of what makes us human isn't settled easily.  When Deckard refers to replicants he has just gunned down as "it," that jolts the viewer.  The replicants in the story have bolted from a colonized planet and come to Earth illegally to find the man who created them.  Their goal: to plead with him to program a longer life into them.  They have an intense human will to live.  And two of the replicants, Pris and Roy, share a deep emotional bond.  Philip K. Dick challenges our ideas about the limits of what we deem human.

I disagree with Kolbert.  I see humanity as a spectrum, and though Neanderthals have been extinct for thirty thousand years, they're entitled to a place on the spectrum.  And scientists  have found evidence of other breeds of humans: most recent skeletons are of "hobbit people" dating to about seventeen thousand years ago, found in Indonesia in 2004; another hominid group that lived more than forty thousand years ago, the Denisovans, has been discovered in Siberia.  "Modern New Guineans carry up to six percent Denisovan DNA," Kolbert writes.  The remains of more kinds of humans likely will be found.  We modern humans have shared the Earth with more distant cousins than we have realized.  The human family is more expansive than we've realized, too.  As for the cruelty inflicted on the replicants in Blade Runner, it rises to the level of crimes against humanity.        

The criteria we've laid out as requirements for admission to the club of humans is as varied as the many kinds of hominids discovered.  For instance, some argue that Neanderthals weren't human because they didn't adorn their cave walls with stunning paintings, as modern humans did; the creative impulse, they argue, must be present for a species to be deemed human.  But I know modern humans lacking even an interest in art, much less an impulse to create art.  Paabo notes that Neanderthals didn't venture across vast bodies of land in search of---well, no one knows exactly what modern humans hoped to find when they set sail.  Neanderthals stayed put when they came upon a staggering obstacle, like an ocean.  But again, plenty of modern humans fear the unknown.  They live their entire lives in the communities where they were born.  Does that make them less than human?

And about Asperger's and autism.  We Aspies and autistics share two genes associated with Neanderthals.  We could be the shadow of Neanderthals living among modern humans.  That doesn't make us any less human.  It puts us on a part of the human spectrum where we don't have a lot of present company.  That makes us unique.  And human.

Us vs. Them---Not.

I belong to a local Asperger's support group that meets in a Philadelphia suburb once a month.  The administrator, Bob Hedin, sets a warm tone of support for anyone who shows up, be they on the spectrum or not.  I hadn't yet been diagnosed when I contacted Bob and asked if I could attend.  He assured me that a number of those attending didn't have a formal diagnosis, but they had their suspicions, as I did at the time.  He encouraged me to join the group for support and information. 

The group is a local chapter of GRASP, the Global and Regional Asperger's Syndrome Partnership,  http://www.grasp.org/  The group offers support for parents, family and friends of Aspies as well as those of us on the autism spectrum, so non-Aspies are among our local chapter members.  The group's goal is to offer support for those touched by autism or Asperger's, not just autistics and Aspies.

But the tenor can be different on some online Asperger's/autism forums.  As with all online forums, participants can voice their pet peeves from behind a wall of anonymity.  In autism/Asperger's forums, this offers a safety valve for Aspies struggling with social isolation, sensory issues, and job and relationship conflicts.  They can seek advice or lash out in confidentiality and know that others are going through the same struggles.

Sometimes, though, an unhealthy group think sprouts in those forums.  It's understandable in a group that goes through a lot of grief from the neuromajority, but we should try to steer Aspies away from it.  Some comments in online forums go something like this: We Aspies are all sweetness and light, and those NTs are a blight.

It isn't so.  We need to gently coax Aspies away from that mindset.  I've got NTs in my life who value my different way of thinking and who want to show support.  I've got NTs in my life I love.  I cannot keep silent while I hear them slandered with bigotry, and it is bigotry.  Replace "NTs" with an ethnic or racial group and utter a similar put-down, and you see the slur for what it is.

Focus on the content of a person's character.  Please.       

Who Wouldn't Melt Down?

Meltdowns are an issue in autism and Asperger's.  They can be lava-flowing, frothing-at-the-mouth, prolonged, violent, destructive, and frightening to those witnessing them.  Happily, mine don't come near the point where they could melt glass. 

In children, meltdowns are distinct from temper tantrums.  A child in the throes of a tantrum will occasionally look to see if they're getting the desired reaction from adults.  They'll have enough control over their tantrum that they'll take care not to hurt themselves.  A child throws a tantrum to achieve a specific goal, and once the goal is met, they calm down.

A meltdown in an autistic child is another matter entirely.  It's a total loss of behavioral control, though it can be triggered because a specific desire isn't granted, but giving the child what they want doesn't end the meltdown.  It has to wind down on its own.  A child in the throes of a meltdown has no awareness of caring for her or his safety.

I've talked to adults with Asperger's who struggle to control meltdowns.  Some have learned to recognize the signs of an impending meltdown, and they've learned to minimize them or to excuse themselves from company if they feel one coming on.  We've talked about what triggers them, and for everyone the triggers are different.

When I visit online autism and Asperger's forums, people talk about meltdowns as if they're part of the genetic package of autism or Asperger's.  I suspect that there is more to it.  Stephen Borgman, a psychotherapist who treats children on the autism spectrum, writes that he sees three possible causes for meltdowns: sensory overload, social challenges, and long term stress.

I question the claim that meltdowns are a genetic trait of the autism spectrum.  I say that because they don't beset just autistics and Aspies.

I had a maternal aunt, no longer living, who was born profoundly deaf.  I learned about the deaf community by becoming acquainted with her deaf friends and by reading about deaf culture.  I learned that deaf people are notorious for displaying blistering meltdowns.  The reason for this could not be genetic because the causes of their deafness vary.  They reach a meltdown point more quickly than the hearing do because going through life deaf in a world of hearing people is a hard life.  To a much greater degree than Aspies do, they struggle to communicate with people who possess one critical sense they lack, and we the hearing make almost no effort to accommodate them.  They're under constant and severe stress just to get through a day, just to navigate this world.  It doesn't take as much in someone under that degree of strain for them to get pushed over the edge and to descend into a meltdown.  A former colleague of mine once managed the concessions at a college for the deaf.  She told me that repairs to vending machines far exceeded those of any other institution where she worked because of frequent student meltdowns.  If a vending machine took their money and didn't dispense a product, students often vented their fury on the machine.

Dr. Borgman is right to cite causes other than genetics for meltdowns in autism.  The stereotype many people have of Aspies as cold and unfeeling is deeply hurtful; to the contrary, our emotions are intense, as are our sensory reactions to the world around us.  Sound, activity, sights, smells, touch--all of that registers with us more intensely than it does with NTs.  I sometimes wish I could have an NT who doubts that take my brain for a test drive to see how much more intensely I feel everything around me and in me.  We've also got the stress of social challenges to cope with.  We have to deal with the people in our lives who take it out on us because they don't "get" us.  This is every waking hour, unless we're alone.  Any one person can endure only so much stress before they reach a breaking point.  We reach ours more quickly and more intensely because our lives bring a lot of stress.

I don't have meltdowns often.  My most recent meltdown was about a year ago.  I'd gone to the Philadelphia Revenue Department to make a tax payment in person.  After a long wait in the cashier's line, the cashier told me I couldn't pay my taxes with the form the tax office had sent me in the mail.  I had to go to a separate line and get a bill printed out first.  I did that, and then returned to the cashier's line.  By now I'd spent over an hour trying to pay the tax and comply with the law.  When I reached the till for the second time, the cashier looked at the bill and said she still wouldn't accept it because a part of the bill hadn't printed out properly.  She told me to return to the other line and get a second bill printed out.  My lava started to flow, and it wasn't pretty.

I've got a bag of tricks that keeps meltdowns in the deep freeze most of the time.  Vigorous exercise, walking, keeping a journal, meditation, yoga, deep breathing, and giving myself permission to go off for some solitude when I need it, all help.  Then too, so do the supportive people in my life who have my back.  They may not always understand my inner life.  But even if I don't have a ready, coherent answer for their gentle "What can I do to help?", they help me to keep my psychic temperature somewhere below simmer.   



   

      

Neanderthals R Us?

Scientists are predicting that one day they will be able to clone Neanderthals, a different kind of human.  As an Aspie, also a different kind of human, I shudder at the thought.

Arguments in favor of doing this are scarily absent of the possible consequences or of how inhumane and unethical this may be.  To hear them, you'd think we're fit to wield such power. 

I'm assuming for now that cloning Neanderthals is even possible.  Pro-cloning arguments run the gamut, among them: We could discover treatments for genetic disorders and diseases; we could learn new problem-solving skills from the different thought processes of Neanderthals, whose brains were wired differently from ours; we could expand our gene pool by producing offspring with them, which could protect us from extinction; we could discover how close they were to our intellectual and moral capabilities; we should because we can.  A frequent argument on comment threads goes like this: "It would be cool."

The pro-cloning supporters think only of what we'd gain from this Nobel Prize-winning parlor trick.  That in itself is a strong argument against cloning.  It reveals modern humanity's feeble capacity for taking into account the rights and feelings of those at our mercy, which strengthens the anti-cloning argument.

I'm thinking of the way we treat non-human earthlings.  It isn't pretty.  Dolphins are highly intelligent, social animals, but we feel entitled to keep them in our custody so that we can swim with them for our amusement.  We have driven countless specie from their habitats and to the brink of extinction.  When they're forced to share our habitats, we call them vermin and we kill them.  We force them to perform in circuses.  We buy exotic, endangered animals and keep them as pets, where the restrictions we must place on them for their, and our, safety rob them of the ability to live out their natures.  We imprison them in zoos.  The wealthy hunt them for sport, sometimes shooting at them from helicopters.  We perform lab experiments on them, inflicting diseases on them to teach us how to cure disease in modern humans or to test for allergens in cosmetics and cologne.  We've domesticated them for our companionship and amusement, and then we keep them in solitary confinement at home while we're at work, where they can't seek out the companionship they crave.

Our savagery toward our own kind can be worse.  We single out humans with different skin color, religions, cultural traditions, ethnicity, and nationality for persecution.  We buy, sell and own people in some parts of the world, often in the same places where we treat women as bad as, or worse than, domestic livestock.  We bomb civilians, set up concentration camps, create man-made famines to starve populations, commit genocide, imprison people for their political beliefs, and show little compassion for the poor and weak among us.  We're witnessing efforts to deal with the debt and deficit in the U.S. by retaining generous tax rollbacks for the wealthiest among us, and deepening hardship for the poor and suffering.  We have a history of putting "freaks" on exhibit in carnivals and circuses.  We have conducted experiments on people without their informed consent.  In some parts of the world we run amok, ripping apart the planet.  Do we behave like a people who would honor the rights of a people we've pulled from extinction?

As someone designated The Other by the neuromajority---"normal" humans---I quibble with plans to clone humans far more Other than me.  At least I can withhold informed consent for experimentation.  I have a voice.  I can defend myself.  A Neanderthal could not.  I know first hand how it feels to be shunned and reviled, even deemed an oddity to be scrutinized.  I feel a duty to go for bat for a people who have no voice.  I'm a modern human.  I'm an offbeat, eccentric human, and even my garden variety quirks arouse the wrath of the neuromajority at times.  I can tell you from my first-hand clashes with today's humans that Neanderthals---a people of eons ago---haven't got the chance of, well, a Neanderthal in the 21st century of enjoying acceptance or equality with us.  And lacking that acceptance, they'd be at our mercy.  Finding yourself at the mercy of today's humans too often doesn't entail mercy.

Suppose the wannabe Frankenstein crowd pulls this off.  We have a sorry history of plowing ahead with untried technology (think nuclear power) with no thought about unintended, long-term consequences to ourselves, to future generations, to Earth's non-humans, or to the environment.

Assume that Neanderthals wouldn't be able to read or write.  Do we take a cue from Brave New World and breed them as the race consigned to perform our menial work?  If they do, do we pay them a wage for their work, or do we just buy and own them?  Do we keep them as family pets?  Do we perform experiments on them?  Do we make the rounds of Las Vegas and Atlantic City with them, making money off of having them perform at casinos?  Will the rich own them as status symbols?

Assume they could learn to read and write and function much as we do.  Assume they could live independently.  Do they live among us?  Do they marry modern humans and have children?  Do we set up "Neanderthal Townships" and segregate them?  How do we plan for the uncanny valley---the visceral hostility some humans show when faced with something not human as they know human, but showing human abilities?  How do we protect Neanderthals from that?  How do we resolve the matter of what it means to be human, when we can't seem to do that with our own species?  Will Neanderthals have equal rights and responsibilities under the law?  If a modern human murders a Neanderthal, does it carry the offense and penalty of murdering a human, or would it be a lesser charge?  Do we answer to them why we brought them to life?

I have to return to two pro-cloning arguments.  One is that we could learn from their different thought processes.  As an Aspie, I have different thought processes.  My brain functions differently.  I can tell you how "neuromajority" modern humans too often have reacted to my different thought processes in the work place: They've ridiculed my unique take on a task, and sometimes they've driven me from jobs.  Neanderthals "thinking differently" could expect much the same.

Pro-cloning scientists also argue that we could gain valuable knowledge about human conditions and diseases.  They argue that any experiment is justified if it yields useful knowledge.  I'm not calling anyone a Nazi.  But the Nazis conducted horrific experiments on those imprisoned in their concentration camps.  Was that justified in the name of gaining knowledge about the human condition?  And that bit about Neanderthals hopefully saving us from extinction?  We drove them into extinction, and now we feel entitled to bring them back to save us from extinction?       

I feel a kinship with Neanderthals, even if they don't exist.  Scientists have speculated that Asperger's is a step in human evolution.  So were Neanderthals.  Modern humans seem to suffer from an aversion to steps in human evolution.  What are they so afraid of?

Consider.  One to 4 percent of modern DNA is Neanderthal DNA.  Their brains, though different from ours, were bigger.  Artifacts left behind by Neanderthals reveal that they had language, they created art and jewelry, and they grasped symbolism.  They cared for their elderly, sick and injured.  Most likely they formed close bonds with each other.  Every Neanderthal skull you see in a museum display belonged to someone's brother or daughter.

I can't help seeing irony here.  We drove Neanderthals to extinction in prehistoric times, and now we're overrunning and trashing our planet to the point where we may drive ourselves into extinction.  Just as we're doing that, we talk of re-creating the humans we killed off.  I wonder if Neanderthals would appreciate that irony---we wiped them out so that we could bring them back just in time for them to watch us wipe ourselves out.

The Tale of the Brain Hiccup

I hope this tale helps our NT allies to bear with us, and possibly even nudge us along, when Aspies are struck with the snag that befalls me sometimes---and likely, other Aspies.  I call it the brain hiccup.

 It strikes me most often when my emotions are running high, but it can accost me at any time.  My mind catches on some psychic detritus that I cannot name for the life of me, and it gets caught there.  When it happens, words elude me.  It's embarrassing as all get-out.  A chat has been humming along just fine; suddenly it screeches to a halt.  My companion makes a comment, and inwardly, I flail for a reply, in vain.  I can see their baffled expression as they wonder why I went mute.  They're waiting for me to respond.  That makes me flail more frantically for a response, which in turn makes a response go further into hiding.  I fumble for some lame comment to show that I'm not orbiting Jupiter.  Sometimes a stammering fit strikes.  Often, the conversation ends.  I walk away hoping I didn't give offense, or give the impression that my companion offended me, causing them bruised feelings.  If I'm lucky, my companion keeps talking.  Eventually they say something that, inexplicably, frees me from whatever my brain is caught on, and I find my words again.  I am not angry or upset when this happens.  I'm stalled. 

If this happens while you're speaking with an Aspie, please be patient.  My lay explanation for this is that our brains don't process input in the same way that NT brains do.  If you can keep on speaking in a non-demanding way, that might help.  I know it helps me.