"Reasonable people promote very easy breathing," my
adopted son, DJ, once typed. For this non-speaking
boy with autism, abandoned at the age of three and
literally tortured in foster care, anxiety remains
his biggest challenge.
"Your breathing would make me nervous," he
wrote to his teachers at the special school he attended
before we adopted him. "Why weren't you teaching
me to talk, to read, and to write?" he remonstrated
them. "I very much value teachers who give nice
instructions breathing easily."
In contrast, he extolled his time
in a regular classroom: "Easy,
quiet breathing waits to hear my words, and respect
grows. Awesome, caring teachers read my writing and
reward me by writing back." It's as if DJ, a sixth-grader,
had transformed the primary, physical symptom of his
anxiety -- heavy breathing -- into a political concept.
In this way, the amelioration of
anxiety has been inexorably tied to the experience
of inclusion: of being wanted by family, school,
and community. "Breathing
feels great now," he declared on his talking computer
during an especially good stretch in the sixth grade. "Breathing
feels kind of like joy. When I'm breathing easily,
I'm sort of like respected kids."
How can respected adults breathe easily about autism?
For one thing, we can promote inclusion as an opportunity
to get to know autistic individuals. Such interaction
would help to debunk the idea of a catastrophic disorder
that precludes awareness of self and others. For too
long scientists have terrorized us with this claim.
For another, we can devote more research money to
improving the quality of life for people with autism.
For every two studies on the cause, or causes, of autism,
there ought to be at least one on the goal of autistic
self-fulfillment. With richly rewarding lives as the
norm, non-autistics might be less hysterical about
finding a cure.
Don't get me wrong: autism presents significant, sometimes
monumental, challenges. DJ, for example, is unable
to speak, has sensory processing difficulties, and
engages in repetitive behavior.
And yet, the boy who was labeled
profoundly retarded when he came to live with us
at the age of six is now a straight "A" student
in a regular school, testing off the charts and using
a computer to communicate. He's also the most empathetic
and politically conscious young person I know.
I'm convinced that we can move forward with a vigorous
research agenda while respecting the person with autism.
But we have to make room for this difference in the
world. We have to reduce the stigma attached to it.
At the same time, we have to provide more support for
parents who frequently find themselves at the ends
of their ropes.
A few years ago, DJ was asked to
compose a paragraph about the American flag for an
Elks Club writing contest. His paragraph went like
this: "The great United
States of America is breathtakingly not free. Equality
is not sacred because not everyone has access to it.
Free people treat my people, very smart people who
type to communicate, as mindless.... The creators of
everyone's very important Declaration of Independence
wasted their breath."
Here was a boy demanding his place in America. I took
note of the signature metaphor and pictured democracy
itself in respiratory distress.
Recently, DJ was much more sanguine
-- and serene -- in an essay comparing the plight
of his "people" with
that of African Americans; he'd just studied the civil
rights movement. "I imagine my words resembling
dead Martin Luther King's respectful vision," he
typed.
Might we neurotypicals mirror such equanimity when
confronting the challenges of autism?
Ralph James Savarese is the author, with his son,
of Reasonable People: A Memoir of Autism and Adoption
(Other Press 2007). He teaches American literature,
creative writing, and disability studies at Grinnell
College.
You're adopting who?
'WHY WOULD anyone adopt a badly
abused, autistic 6-year-old from foster care?"
So my wife and I were asked at
the outset of our adoption-as-a-first-resort adventure.
It was a reasonable question in this age of narrow
self-concern — far more reasonable,
or at least more reasonably put, than many of the other
questions we fielded.
For example, "Why don't you have your own children?" a
wealthy relative inquired, as if natural family-making
were a kind of gated community it was best never to
abandon. "You two have such good genes," she
added. "Why waste them?"
A colleague at work confronted
me in the mailroom with this memorable gem: "Have you tried in-vitro?" She
feared that we hadn't availed ourselves of the many
wondrous technologies that rescue infertile couples. "Wouldn't
that be better than adopting a child with a disability?" she
asked, drawing out the word "disability." "God
knows what that kid's parents were doing when they
conceived him."
"We're not infertile," I barked. "We
have a relationship with the boy."
My wife, an autism expert, had
offered his mother services, but as the woman found
it increasingly difficult to care for her son and
then dropped out of the picture altogether, we'd
started spending time with him. His first communicative
act with language, at age 3 — the
sign for "more" — we'd taught him while
tickling his belly.
He later made that sign in the
emergency room of a hospital where he was brought
after being beaten in foster care. Upon seeing us — we'd been called
in to try to calm him — he stopped in his tracks,
paused (as if to allow some associative chain to complete
itself) and demanded obsessively to be tickled. I remember
searching on his chest for unbruised patches among
the purple, blue and black. He was that frantic in
his quest for the familiar and, dare I say, for love.
To this day, I can't believe how
callous people were; the strange anxiety that adopting
a child with a disability provoked. And the anxiety
just kept coming. "Healthy
white infants must be tough to get," a neighbor
commented. No paragons of racial sensitivity, we were
nevertheless appalled by the idea that we'd do anything
to avoid adopting, say, a black child or a Latino one.
As offensive was the assumption
that we must be devout Christians: hyperbolic, designated
do-gooders with a joint eye firmly on some final
prize. "God's
reserving a special place for you," we heard on
more than one occasion, as if our son deserved pity
and we were allowed neither our flaws nor a different
understanding of social commitment. The journalist
Adam Pertman, in his otherwise excellent book, "Adoption
Nation," reproduces this logic exactly when he
speaks of "children so challenging that only the
most saintly among us would think [my italics] of tackling
their behavioral and physical problems."
Despite the stigma attached to "special-needs
children," people do adopt these kids. And yet,
many more Americans spend gobs of money on fertility
treatments or travel to foreign countries to find their
perfect little bundles. I'm haunted by something my
son wrote after we taught him how to read and type
on a computer: "I want you to be proud of me.
I dream of that because in foster care I had no one." How
many kids lie in bed at night and think something similar?
The physical and behavioral problems
have been significant, at times even crushing. The
last eight years have been devoted almost exclusively
to my son's welfare: literacy training, occupational
therapy, relationship building, counseling for post-traumatic
stress — the list
goes on and on. But what strides he has made.
The boy who was still in diapers
and said to be retarded when he came to live with
us is now a straight-A student at our local middle
school. He's literally rewriting the common scripts
of autism and "attachment disorder" (the
broad diagnosis for the problems of abandoned and traumatized
kids). These are hopeless scripts, unforgiving scripts
in which the child can't give back.
My son does, and others can as
well. Recently, in response to my hip replacement,
he typed on his computer, "I'm
nervous because Dad has not brought me braces [his
word for crutches]." I was just home from the
hospital — wobbly, a bit depressed, in pain.
To my question, "Why do you need crutches?" he
responded endearingly, "You know how I like to
be just like you." My son was trying to make me
feel better, taking on my impairment, limping with
me.
