Autism, Inside and Out

Asperger
Love: Searching for Romance When You're Not Wired to Connect by Amy Harmon. A New York Times/Byliner Original. Available for Kindle, iPad, Kobo, and Nook, $2.99.

And Straight On Till Morning: Essays on Autism Acceptance, edited by Julia Bascom. Published by the Autistic Self-Advocacy Network. Available for Kindle, $2.99.

Reviewed by Steve Silberman

In the early 1990s, a mother told a conference of autism
professionals that the upside of having a teenager on the spectrum at home is that
they will never want to do the things that often get kids in trouble. There will
be no need for awkward conversations about sex, because people with autism are
either uninterested in or incapable of intimacy. Parents won't have to worry
about a late-night knock on the door from the local sheriff, because autistic teens
have no desire to party. If these generalizations now seem naïve, offensive, or
some combination of the two, this mother had a lot of company in her assumptions.
The notion that people on the spectrum are disinclined to seek connection with
others is embedded in the very word autism,
which is derived from the Greek word for self, autos.

One of the world's leading
authorities on the subject, psychologist Tony Attwood, devotes only a handful
of pages in his Complete Guide to
Asperger's Syndrome to sexuality and relationships. Specifically, there are
two references to "lack of desire," four to pornography, two to
exploitation by predators, and two to celibacy. Casting a further chilling
effect on the notion of romance, Atwood cautions potential suitors that people on
the spectrum may find a friendly touch on the arm "unpleasant and even
difficult to tolerate, let alone enjoy" because of sensory sensitivity,
and compares embracing an autistic partner to "hugging a piece of
wood." This is the historical backdrop that looms — albeit invisibly to
most readers — behind the publication of a new ebook by Pulitzer prize-winning
New York Times reporter Amy Harmon, Asperger Love: Searching for Romance When
You're Not Wired to Connect.

Harmon is one of the most sensitive
and savvy reporters on the subject in mainstream media. In 2011, she published
"Autistic
and Seeking a Place in an Adult World," an account of the search for employment
by a young artist named Jason Canha. While dozens of news stories a week
speculate about candidate genes, environmental factors, and other possible
causes for the condition, Harmon zeroed in on the practical issue that all
families face when their kid "ages out" of services: How are they
supposed to support themselves and learn to live independently? At more than 7000
words, it was one of the longest features on any subject in the history of the Times, and reader response was overwhelmingly
positive. Encouraged, Harmon's editors gave her several months to follow up on
an insight she had while reporting on Canha: despite the fact that parents and
teachers are often occupied by more pragmatic concerns, young people on the spectrum are as intensely curious about
intimacy as their neurotypical peers, as even a brief tour of the discussion
forums at WrongPlanet.net can attest.

Harmon's second bout of reporting produced
"Navigating
Love and Autism," the story of a burgeoning love affair between two
young people with Asperger syndrome named Jack Robison and Kirsten Lindsmith. (Jack's
father, John Elder Robison, is the author of the bestselling memoir Look Me in the Eye; his new book, Raising Cubby, is about his experiences
as the autistic father of an autistic son.) That article provided the
foundation for Asperger Love, which
is twice as long as the original piece, and includes fuller and more nuanced
portrayals of Jack, Kirsten, John Elder and his wife Maripat, and Jack and
Kirsten's friend Alex Plank, the founder of WrongPlanet.net.

Asperger
Love follows the familiar arc of nearly every classic tale of bright young
outsiders who discover a safe haven in each other (see Romeo and Juliet and Wes Anderson's Moonrise Kingdom.) The difference is that in this case, the lovers
face not only obstacles posed by the uncomprehending world, but their own
difficulties in reading one another's social signals, a profound challenge for
people on the spectrum.

Early in the book, we see Lindsmith
in high school, before her own Asperger's diagnosis, when she's still trying to
make a relationship work with a charismatic extrovert who insists on acting as
her life-coach. He urges her to stop speaking in a monotone and fidgeting with
her hands; he elbows her when she goes on at length about her interest in
animal physiology; he prompts her to be more affectionate and expressive by barking
at her, "Don't filter!"

In one of Harmon's
characteristically well-turned sentences, she says that Kirsten eventually
"chafed at his frequent instructions, which required constant, invisible
exertion to obey." The author gets across a lot of information in few
words here: the soon-to-be-ex-boyfriend's arrogant presumption that his way of
behaving would come naturally to Kirsten if she would just stop filtering
herself; the annoyance that those kinds of assumptions produce; and the hard
(but "invisible") work demanded of autistics who are asked to just act normal for a change.

In a similarly spare and brilliant passage,
Harmon describes the little details of behavior that rise into Jack and Kirsten's
mutual awareness as they fall in love:

Jack, Kirsten noticed, bit his
lips, a habit he told her came from not knowing how he was supposed to arrange
his face to show his emotions. Kirsten, Jack noted, cracked her knuckles, which
she later told him was her public version of the hand flapping she now reserved
for when she was alone.

In two sentences, Harmon expresses
truths that are both universally human and distinctly autistic. Everyone
experiences pressure to conform to social norms, but Harmon's description of
how Jack must "arrange his face" casts light on the rigorous
self-monitoring — the "constant, invisible exertion" — required of
autistic people to get through a typical day in neurotypical society. Likewise,
the detail of the knuckle-cracking deftly paints a picture of two parallel worlds:
Kirsten's public life, where she too must "arrange" her spontaneous behavior
to avoid calling attention to herself, and her private autistic reality, where
she can flap to her heart's content.

With the same reportorial eye for
the essential, Harmon skates over aspects of autism history that are so deep and hotly
contested that they can best be described as yawning abysses. It's a relief to
read an account of the domestic lives of autistic people that never devolves
into a discussion of cortical deficits, de
novo mutations, and the other impedimenta of autism narratives that make it
seem as if people on the spectrum hardly exist outside of clinics, genetic
databases, and MRI scanners. In that sense, Asperger
Love is like the wedding announcements by same-sex couples that now run
routinely in the Times: extraordinary
precisely because they're so ordinary.

Only in a couple of places does
Harmon's urge to simplify lead her astray. She begins her second chapter with
the statement, "Only for about a decade have a group of socially impaired
young people with normal intelligence and language development been recognized
as the neurological cousins of individuals with classic autism." While I
love the phrase "neurological cousins" so much that I will
undoubtedly steal it for my own writing, this assertion is either ten years off,
or 70 years off, depending on how you look at it.

The broadening of the diagnostic criteria
for autism in the fourth edition of the Diagnostic
and Statistical Manual of Mental Disorders (commonly known as the DSM-IV)
to reflect the full breadth of what we now call the spectrum — including the
addition of "Asperger's disorder" — took place in 1994, not 2004. It
was precisely that change that made the autism of people like Jack and John
Elder Robison, Kirsten Lindsmith, and Alex Plank visible to the medical
establishment. Before that, all of these characters in Harmon's book would have
been excluded from a diagnosis and support services, and written off as
"schizotypal," neurotic, or odd.

The first person to notice that
people like them are the neurological cousins of kids who are much more
obviously disabled, however, was the pediatrician Hans Asperger in his clinic
in Vienna way back in the 1940s; that's why the diagnosis given to people like
Jack and Kirsten bears his name — until May, anyway, when the long-awaited
DSM-5 will be published, and the subcategory of Asperger's disorder will be dispensed
with in favor of the umbrella term "Autism Spectrum Disorder."

The second slight misstep in Harmon's
elegant dance is her use of the word "mindblindness" as the
title of her second chapter. For reasons that should be self-evident, many
autistic people loathe the term, which was coined by British cognitive
psychologists Simon Baron-Cohen and Uta Frith in the 1980s. In its original context,
the all-too-catchy neologism was their attempt to give a name to the core
deficit in a clinical population so various that it encompasses both children
unable to speak and brilliant coders who can't seem to shut up about the
various incarnations of the Time Lord in Doctor
Who. (Thus the truism in the autistic community, "If you've met one
autistic person, you've met one autistic person.") The controversy over
the term mindblindness — and its relationship to compassion and empathy — is
one of the most yawning abysses in autism discourse, and too deep to do justice
to here. Suffice it to say that Baron-Cohen made things worse by muddying the distinction
between an inability to parse social cues in real time — which seems to be the
cognitive issue unifying all points on the spectrum — and empathy, which is more
like a capacity to care about how
another person is feeling.

Anyone who has spent time with
autistic people can tell you that they're intensely concerned with how other
people are feeling, to the point of being overwhelmed. But they often can't
piece those feelings together from the usual clues of facial expression, tone
of voice, and body language. At the same time, however, autistics are often
adept at reading each other's
emotional states from signs that would be opaque to their typical peers. There
are moments in Harmon's book when Jack and Kirsten seem to be doing that for
one another. (This experience is so common that autistics refer to a second
sense called "autdar" — inspired by gaydar — that enables them to
spot a fellow Aspie in a room full of chatty neurotypicals.) Calling autistics
mindblind may turn out to be as apt as calling those who don't speak English
deaf.

I recently asked Uta Frith about
the term and she replied: "I now avoid using it, as it seems to have led
to a lot of regrettable misunderstandings. Clearly we have not done a good
enough job explaining what we mean. Even the original proponents of the term
are not of one mind, and there are interestingly different interpretations. For
example, my interpretation is different from Simon's as regards 'empathy.' As
you know, a number of my more recent papers conclude that empathy is present in
autism." In other words, the term is contested even by the two clinicians
who popularized it. Harmon would have been better off shunning it altogether.

That said, Asperger Love is a valuable and humane contribution to the popular
literature of autism, and a touching, funny, and engaging love story that
should appeal even to readers with no direct connection to the subject. One of
my favorite parts of the book is the postscript, when Harmon steps forth from
behind the narrative curtain to talk about what she learned by reporting the
story. "The more I observed autistic behavior," she reflects,
"the more my own was revealed to me in a light not available elsewhere… As
I sought to portray the oddness of my autistic subjects, I found that they were
altering my view of what passes for normal. Time and again they exposed my own
pretensions and highlighted the absurdity of the social mores to which so many
of us subscribe."

I asked Harmon to elaborate on this
further in email, and she replied:

What changed for me
as a result of my reporting is not so much my perception of people with autism,
as my perception of the social conventions practiced by the rest of the world.
Even in our most intimate relationships, we want our partners to read our
minds, we value not having to ask for what we need, we fault the other for not
anticipating it. Why? It seemed so refreshing, watching Jack and Kirsten, to be
more forthright.

I went from thinking that people
with autism needed me to help explain their oddness to the world so they could
better fit in, to thinking that the world is a pretty odd place and that maybe
we would all be better off rethinking some of the social conventions that seem
so alien to people with autism.

Rethinking social conventions in light of autism is
precisely the goal of another just-published ebook called And Straight On Till Morning: Essays on Autism Acceptance.
The third title published by a non-profit group called the Autistic Self-Advocacy Network, it is
an anthology of essays about autism written from the inside. Each of the
contributors to the book is on the spectrum themselves, the parent of an
autistic child, or an ally in the disability rights movement.

Though both Asperger Love and the third ASAN anthology are
text with no bells and whistles, they take advantage of new possibilities
opened up by ebooks in different ways. Asperger Love enabled the author of a much-lauded Times feature to add depth and personal perspective.  And Straight On Till
Morning reminds me of the copies of Co-Evolution
Quarterly that I read avidly as a
teenager, filled with lively writing that keyed off of current events but
wasn't as perishable as most magazine writing. I will be rereading the opening
essay many times as one of the most eloquent descriptions of an inner life that
I have ever come across, autistic or neurotypical. Written by a
disability activist named Amanda Baggs, who electrified YouTube in 2007 with a
video called "In My
Language," "Plants Outside the Shade" begins humbly like a
grade-school report, "This is a personal description of some of what
autism means to me." But then it takes flight into dazzlingly original
prose-poetry that takes you to the heart of autistic perception.

Autism means that my earliest
memories are of floating in among the feel of things.  Not how they looked or sounded, but how they
felt. Words don't exist for the hundreds if not thousands of variants on
this.  A way of perceiving the world that
has remained dominant for me even after sensory input became stronger and,
later, words and ideas. It's the foundation that I always start from when I climb
up the cliffs, day after day, that allow me to use words and ideas and move and
understand what is around me.  And no
matter how high I climb, that underlying way of experiencing the world is still
there.

A lot of people see this way of
relating to the world as that old cliché of compensation. Where people think
blind people's hearing must grow more acute. I see it differently.  It's a way of experiencing things that could
only have developed if more typical ways were absent.  There are a lot of plants that cannot grow in
the shade of a forest.  But if there are
no big shade-producing trees, they flourish. It's like that.  Many of my experiences and abilities stem
from what happens when plants can flourish outside the shade of a forest.

I can spend all day with one
marble. Looking at it, feeling it on my face. 
One problem with trying to describe this is that there are far more
possible sensations than there are words for sensations.  So an entire day's worth of experiences can
come out to only one sentence.  And it's
harder still to describe the patterns formed between those sensations.  Not abstract, logical patterns but concrete,
sensory patterns. And those are how I understand and interact with the world.

 How might a
clinician describe this experience from the outside?

"Patient
Amanda B., a 32-year-old female with a pervasive developmental disorder and
significant verbal impairment, perseverated with a marble for more than six
hours under observation today. (The patient's mother reports that marbles and
other small spherical objects are one of her daughter's 'special interests.') Amanda
fixated on the marble for an extended period of time and pressed it against her
cheeks for the purposes of self-stimulation. This behavior (not significantly
self-injurious) was accompanied by nonsense vocalizations."

For nearly five decades, drily
clinical, outside views of autism were all we had. The advent of
first-person accounts by people like Temple Grandin, Jim Sinclair, Amy
Sequenzia, and Julia Bascom
is providing an invaluable perspective on what life on the spectrum is really
like.

The autistic self has often been
invisible to clinicians. Bruno Bettelheim, the psychoanalyst who proposed in
the 1960s that autism is caused by "refrigerator mothers" who
secretly wish their children dead, called his bestseller on the autistic psyche
The Empty Fortress.  I once heard a scientist receiving a lifetime achievement award
at a major autism conference refer to her early days in the field as "like
veterinary medicine."

The cost of
that invisibility, and the brutal treatment that came with it, plays out in
"The Judge Rotenberg Center on Trial," a deeply reported essay by
Shain Neumeier in And Straight On Till
Morning that details the case against a "treatment" center in
Massachusetts that employs painful skin shocks to punish self-injurious
behavior. This isn't something that happened in the dark days of behaviorism
run wild in the 1960s — it's happening now in Massachusetts, and a special
rapporteur at the United Nations has deemed
it torture. ASAN is currently assisting the legal effort to shut the JRC
down.

In an
enlightening essay called "From One Ally to the Education Community: A New View of Students with Autism," Cheryl M.
Jorgensen proposes rethinking special education to focus on strengthening the
natural gifts of autistic students, rather than on correcting their deficits.

"He’s a biter." "She’s a runner."
"He is non-verbal." "She’s off in her own world." "There’s
nothing really there, there." "He is difficult to be friends with
because all he talks about is train schedules." These statements are often
used to describe children and adults who have autism and they represent a
belief that autism is a disease or a disorder that needs to be cured, and
ultimately, eradicated; that people with autism are "abnormal" and
the rest of us are "normal." When people with autism are viewed this
way, the difficulties or challenges they experience are placed within them and thus, they are required to change in order to
be eligible to participate in the full range of inclusive school and community
activities and environments. How often have you heard it said that "She
could never be included in a general education class because of her sensory
issues" Or "He can’t hold a real job because of his challenging
behavior issues?"

What if we changed the fundamental way that we viewed
students with autism and instead of viewing autism as the problem, we viewed it as a
natural part of human diversity? What if, instead of trying to make people
with autism "normal," we intentionally looked for their strengths and
viewed their challenges as problems with their environment? What if we
appreciated the unique talents of students with autism and recognized the
contributions that they might make to our schools and communities?

Ideas like
this are gaining traction in the special-education community (see Thomas Armstrong's
excellent new book Neurodiversity
in the Classroom) because they bring out the best in every student, including those with dyslexia, ADHD, and others who think and learn differently from
their peers — while 70 years of trying to force autistic kids to "act
normal for a change," and punishing them for harmless behavior like hand-flapping,
has only added to their challenges in daily life.

These two new
ebooks, with two very different perspectives, arrive at the same conclusion: By understanding autism from the inside, we become more fully human — no
matter where we are on the grand spectrum.

Steve Silberman is the author of the upcoming book NeuroTribes: Thinking Smarter About People Who Think Differently, to be published in 2014 by Avery Books/Penguin. He is also the author of the NeuroTribes blog on the Public Library of Science and a correspondent for Wired magazine.