1. Did Adam
Lanza, who authorities have identified as the gunman in Newtown, Conn., ever
receive a diagnosis of Asperger's syndrome?
2. If so, would that be relevant?
3. And has The Times been scrupulously responsible in the way it has reported on
this aspect of Friday's massacre at the Sandy Hook Elementary School?
In brief, here are my conclusions, based on my own reading and a number of
interviews and conversations this week.
1. Possibly.
2. It would not matter to the killing; it would help in understanding the
personality and experiences of the gunman.
3. The Times's early reporting and presentation of the information was
well-intentioned but flawed. (It began to remedy those flaws in a blog post
Monday afternoon but had not yet done so in print on Tuesday.)
This subject is important to many of those whose lives are affected by
Asperger's or other forms of Autism Spectrum Disorder. They are troubled and
angered by how the topic has been treated in The Times and other news
organizations over the past several days.
Joe McGinniss, the well-known author and the father of a son who has Asperger's,
is among the many who wrote to me.
"The suggestion that Asperger's might be a clue to why this happened is
offensive to me," he said in a telephone interview Tuesday. "It's misleading to
suggest that quiet people who don't pick up on social cues are more likely to
become killers."
Dr. Ami Klin, an expert on autism at the Emory University School of Medicine in
Atlanta, said that any tie between the Newtown shootings and Asperger's or
autism "is an enormous disservice" to those whose lives are affected by these
developmental disorders, which should not be confused with mental illness.
"Any human condition can coexist with violence," he said, but no correlation
should be drawn.
In fact, he said, those with Asperger's "are much more likely to be victims
rather than victimizers."
"This is not about autism," Dr. Klin said. "It's about mental illness and guns
that those with mental illness should have no access to."
The Times was understated in its reporting on this subject and, if you were a
casual reader, the reference might not have jumped out. But for those close to
the situation - often because they are parents of autistic children - it
certainly did.
This was the initial reference, in a Saturday print edition profile of Mr.
Lanza, written on deadline:
Matt Baier, now a junior at the University of Connecticut, and other high school
classmates recalled how deeply uncomfortable Mr. Lanza was in social situations.
Several said in separate interviews that it was their understanding that he had
a developmental disorder. They said they had been told that the disorder was
Asperger's syndrome, which is considered a high functioning form of autism.
"It's not like people picked on him for it," Mr. Baier said. "From what I saw,
people just let him be, and that was that."
Law enforcement officials said Friday that they were closely examining whether
Mr. Lanza had such a disorder.
I interviewed David Halbfinger, a reporter who was the article's author. He told
me that he did not write that reference to Asperger's, but approved it after it
had been inserted by an editor. He also said that the idea behind this first-day
story was to find out and communicate as much as possible about Mr. Lanza.
"The fear that's being expressed is that there's an implied cause, but we didn't
say they were investigating it as a cause," Mr. Halbfinger said. "On the first
day, law enforcement is investigating everything. To impute cause and effect is
to make a giant leap that we didn't do."
The Metro editor, Carolyn Ryan, responded in an e-mail:
We were told Adam Lanza had Asperger's from so many people who knew him that it
would have been irresponsible to withhold that from readers. However, we were
very careful with the language, saying that people who knew him understood he
had a developmental disorder and had been told it was Asperger's. I wanted to
make sure readers understood where the information was coming from, and that law
enforcement had not confirmed this or officially described him as having
Asperger's. The "closely examining" language was not intended to suggest that
Asperger's accounted for the motive or cause, but that law enforcement officials
had been told he had Asperger's and were trying to understand his condition and
his behavior.
Critics, though, say that if you want to understand how such a statement might
be taken, try this hypothetical substitution: "Law enforcement officials said
they were closely examining whether Mr. Lanza is gay." There is, for a
reasonable person, the suggestion of cause and effect. It is very unlikely that
that sentence would have appeared in The Times without further explanation.
References to Asperger's have now appeared in several Times articles, all based
on anonymous sources or on named sources who were reporting what they had heard
from someone else. It has been, in short, repeated conjecture by those who don't
know. On Monday, The Associated Press reported that a divorce mediator, who was
named, was told by the Lanzas that their son had Asperger's, and The Times began
reporting that on The Lede blog. The blog post did a great deal to explain the
issue clearly and responsibly.
If there were solid sourcing last week of the Asperger's diagnosis, the issue of
its relevance could have been handled in a clarifying follow-up sentence -- for
example: "Autism and Asperger's are developmental disorders, not mental
illnesses; and there is no connection between them and violent behavior."
Mr. Halbfinger protested when I suggested the idea of such an explanation,
particularly in a first-day story. "To me, it seems kind of ridiculous; that's
the journalistic equivalent of a nanny state," he said. He added, though, that
as a parent himself, he does understand how parents feel about this subject. And
he sees that there may be a "knowledge deficit" - people may not know very much
about autism and Asperger's.
The story by The A.P. did have such a sentence as its last paragraph.
I think that is helpful and necessary. Cause and effect had been suggested; and
something should have been done - and still can be -- to clear up that troubling
misconception. And while this may be of greatest concern to those who have a
family member with Asperger's or autism, it's broader than that. These are
questions of clarity and accuracy -- and those affect everyone. But more
optimistically, there is now an opportunity to do some educating. I hope that
happens.
LAST
Wednesday night I listened to Andrew Solomon, the author of the extraordinary
new book “Far From the Tree,” talk about the frequency of filicide in families
affected by autism. Two days later, I watched the news media attempt to explain
a matricide and a horrific mass murder in terms of the killer’s supposed autism.
It began as insinuation, but quickly flowered into outright declaration. Words
used to describe the killer, Adam Lanza, began with “odd,” “aloof” and “a
loner,” shaded into “lacked empathy,” and finally slipped into “on the autism
spectrum” and suffering from “a mental illness like Asperger’s.” By Sunday, it
had snowballed into a veritable storm of accusation and stigmatization.
Whether reporters were directly attributing Mr. Lanza’s shooting rampage to his
autism or merely shoddily lumping together very different conditions, the false
and harmful messages were abundant.
Let me clear up a few misconceptions. For one thing, Asperger’s and autism are
not forms of mental illness; they are neurodevelopmental disorders or
disabilities. Autism is a lifelong condition that manifests before the age of 3;
most mental illnesses do not appear until the teen or young adult years.
Medications rarely work to curb the symptoms of autism, but they can be
indispensable in treating mental illness like obsessive-compulsive disorder,
schizophrenia and bipolar disorder.
Underlying much of this misreporting is the pernicious and outdated stereotype
that people with autism lack empathy. Children with autism may have trouble
understanding the motivations and nonverbal cues of others, be socially naïve
and have difficulty expressing their emotions in words, but they are typically
more truthful and less manipulative than neurotypical children and are often
people of great integrity. They can also have a strong desire to connect with
others and they can be intensely empathetic — they just attempt those
connections and express that empathy in unconventional ways. My child with
autism, in fact, is the most empathetic and honorable of my three wonderful
children.
Additionally, a psychopathic, sociopathic or homicidal tendency must be
separated out from both autism and from mental illness more generally. While
autistic children can sometimes be aggressive, this is usually because of their
frustration at being unable to express themselves verbally, or their extreme
sensory sensitivities. Moreover, the form their aggression takes is typically
harmful only to themselves. In the very rare cases where their aggression is
externally directed, it does not take the form of systematic, meticulously
planned, intentional acts of violence against a community.
And if study after study has definitively established that a person with autism
is no more likely to be violent or engage in criminal behavior than a
neurotypical person, it is just as clear that autistic people are far more
likely to be the victims of bullying and emotional and physical abuse by parents
and caregivers than other children. So there is a sad irony in making autism the
agent or the cause rather than regarding it as the target of violence.
In the wake of coverage like this, I worry, in line with concerns raised by the
author Susan Cain in her groundbreaking book on introverts, “Quiet”: will shy,
socially inhibited students be looked at with increasing suspicion as
potentially dangerous? Will a quiet, reserved, thoughtful child be pegged as
having antisocial personality disorder? Will children with autism or mental
illness be shunned even more than they already are?
This country needs to develop a better understanding of the complexities of
various conditions and respect for the profound individuality of its children.
We need to emphasize that being introverted doesn’t mean one has a developmental
disorder, that a developmental disorder is not the same thing as a mental
illness, and that most mental illnesses do not increase a person’s tendency
toward outward-directed violence.
We should encourage greater compassion for all parents facing an extreme
challenge, whether they have children with autism or mental illness or have lost
their children to acts of horrific violence (and that includes the parents of
killers).
Consider this, posted on Facebook yesterday by a friend of mine from high school
who has an 8-year-old, nonverbal child with severe autism:
“Today Timmy was having a first class melt down in Barnes and Nobles and he
rarely melts down like this. He was throwing his boots, rolling on the floor,
screaming and sobbing. Everyone was staring as I tried to pick him up and [his
brother Xander] scrambled to pick up his boots. I was worried people were
looking at him and wondering if he would be a killer when he grows up because
people on the news keep saying this Adam Lanza might have some spectrum
diagnosis ... My son is the kindest soul you could ever meet. Yesterday, a
stranger looked at Timmy and said he could see in my son’s eyes and smile that
he was a kind soul; I am thankful that he saw that.”
Rather than averting his eyes or staring, this stranger took the time to look,
to notice and to share his appreciation of a child’s soul with his mother. The
quality of that attention is what needs to be cultivated more generally in this
country.
It could take the form of our taking the time to look at, learn about and
celebrate each of the tiny victims of this terrible shooting. It could manifest
itself in attempts to dismantle harmful, obfuscating stereotypes or to clarify
and hone our understanding of each distinct condition, while remembering that no
category can ever explain an individual. Let’s try to look in the eyes of every
child we encounter, treat, teach or parent, whatever their diagnosis or label,
and recognize each child’s uniqueness, each child’s inimitable soul.
THE report
by the Centers for Disease Control and Prevention that one in 88 American
children have an autism spectrum disorder has stoked a debate about why the
condition’s prevalence continues to rise. The C.D.C. said it was possible that
the increase could be entirely attributed to better detection by teachers and
doctors, while holding out the possibility of unknown environmental factors.
But the report, released last month, also appears to be serving as a lightning
rod for those who question the legitimacy of a diagnosis whose estimated
prevalence has nearly doubled since 2007.
As one person commenting on The New York Times’s online article about it put it,
parents “want an ‘out’ for why little Johnny is a little hard to control.” Or,
as another skeptic posted on a different Web site, “Just like how all of a
sudden everyone had A.D.H.D. in the ’90s, now everyone has autism.”
The diagnosis criteria for autism spectrum disorders were broadened in the 1990s
to encompass not just the most severely affected children, who might be
intellectually disabled, nonverbal or prone to self-injury, but those with
widely varying symptoms and intellectual abilities who shared a fundamental
difficulty with social interaction. As a result, the makeup of the autism
population has shifted: only about a third of those identified by the C.D.C. as
autistic last month had an intellectual disability, compared with about half a
decade ago.
Thomas Frazier, director of research at the Cleveland Clinic Center for Autism,
has argued for diagnostic criteria that would continue to include individuals
whose impairments might be considered milder. “Our world is such a social
world,” he said. “I don’t care if you have a 150 I.Q., if you have a social
problem, that’s a real problem. You’re going to have problems getting along with
your boss, with your spouse, with friends.”
But whether the diagnosis is now too broad is a subject of dispute even among
mental health professionals. The group in charge of autism criteria for the new
version of the Diagnostic and Statistical Manual of Mental Disorders has
proposed changes that would exclude some who currently qualify, reducing the
combination of behavioral traits through which the diagnosis can be reached from
a mind-boggling 2,027 to 11, according to one estimate.
Biology, so far, does not hold the answers: there is no blood test or brain scan
to diagnose autism. The condition has a large genetic component, and has been
linked to new mutations that distinguish affected individuals even from their
parents. But thousands of different combinations of gene variants could
contribute to the atypical brain development believed to be at the root of the
condition, and the process of cataloging them and understanding their function
has just begun.
“When you think about that one in 88, those ‘ones’ are all so different,” said
Brett Abrahams, an autism researcher at Albert Einstein College of Medicine.
“Two people can have the same mutation and be affected very differently in terms
of severity. So it’s not clear how to define these subsets.”
Some parents bristle at the notion that their child’s autism diagnosis is a
reflection of the culture’s tendency to pathologize natural variations in human
behavior. Difficulty in reading facial expressions, or knowing when to stop
talking, or how to regulate emotions or adapt to changes in routine, while less
visible than more classic autism symptoms, can nonetheless be profoundly
impairing, they argue. Children with what is sometimes called “high functioning”
autism or Asperger syndrome, for instance, are more likely to be bullied than
those who are more visibly affected, a recent study found — precisely because
they almost, but don’t quite, fit in.
In a blog entry, Christa Dahlstrom wrote of the “eye-rolling response” she often
gets when mentioning her son’s autism by way of explaining his seeming rudeness:
“The optimist in me wants to hear this as supportive (Let’s not pathologize
differences!) but the paranoid, parent-on-the-defensive in me hears it as
dismissive.”
There are, Ms. Dahlstrom acknowledges, parents of children with autism whose
challenges are far greater. And perhaps it stands to reason that at a time when
government-financed services for such children are stretched thin, the question
of who qualifies as autistic is growing more pointed. “ ‘You don’t get it; your
kid is actually toilet trained,’ ” another mother told her once, Ms. Dahlstrom
recalled. “And of course she was right. That was the end of the conversation.”
But Zoe Gross, 21, whose autism spectrum disorder was diagnosed at age 4, says
masking it can take a steep toll. She has an elaborate flow chart to help
herself leave her room in the morning (“Do you need a shower? If yes, do you
have time for a shower?”). Already, she had to take a term off from Vassar, and
without her diagnosis, she says, she would not be able to get the accommodations
she needs to succeed when she goes back.
According to the C.D.C., what critics condemn as over-diagnosis is most likely
the opposite. Twenty percent of the 8-year-olds the agency’s reviewers
identified as having the traits of autism by reviewing their school and medical
records had not received an actual diagnosis. The sharpest increases appeared
among Hispanic and black children, who historically have been less likely to
receive an autism diagnosis. In South Korea, a recent study found a prevalence
rate of one in 38 children, and a study in England found autism at roughly the
same rate — 1 percent — in adults as in children, implying that the condition
had gone unidentified previously, rather than an actual increase in its
incidence.
Those numbers are, of course, dependent on the definition of autism — and the
view of a diagnosis as desirable. For John Elder Robison, whose memoir “Look Me
in the Eye” describes his diagnosis in middle age, the realization that his
social awkwardness was related to his brain wiring rather than a character flaw
proved liberating. “There’s a whole generation of people who grew up lonelier
and more isolated and less able to function than they might have been if we had
taken steps to integrate them into society,” he said.
Yet even some parents who find the construct of autism useful in understanding
and helping children others might call quirky say that in an ideal world, autism
as a mental health diagnosis would not be necessary.
“The term has become so diffuse in the public mind that people start to see it
as a fad,” said Emily Willingham, who is a co-editor of “The Thinking Person’s
Guide to Autism.” “If we could identify individual needs based on specific gaps,
instead of considering autism itself as a disorder, that would be preferable. We
all have our gaps that need work.”
Teams of
scientists working independently have for the first time identified several gene
mutations that they agree sharply increase the chances that a child will develop
autism. They have found further evidence that the risk increases with the age of
the parents, particularly in fathers over age 35.
The gene mutations are extremely rare and together account for a tiny fraction
of autism cases — in these studies, only a handful of children. Experts said the
new research gave scientists something they had not had: a clear strategy for
building some understanding of the disease’s biological basis.
Scientists have been debating the relative influence of inherited risk and
environmental factors in autism for decades, and few today doubt that there is a
strong genetic component.
But biologists have groped in vain for a reliable way to clarify the underlying
genetics of these so-called autism spectrum disorders, including Asperger
syndrome and related social difficulties that are being diagnosed at alarmingly
high rates — on average, in one in 88 children, according to a government
estimate released last week.
Previous studies have produced a scattering of gene findings but little
consensus or confidence in how to proceed.
The new research — reported in three papers posted online on Wednesday in the
journal Nature — provides some measure of both, some experts said. There are
probably hundreds, perhaps more than a thousand, gene variations that could
disrupt brain development enough to result in social delays.
An intensified search for rare mutations could turn up enough of these to
account for 15 percent to 20 percent of all autism cases, some experts say, and
allow researchers a chance to see patterns and some possible mechanisms to
explain what goes awry.
“These studies aren’t so much a breakthrough, because we knew this was coming,”
said Jonathan Sebat, a professor of psychiatry and cellular and molecular
medicine at the University of California, San Diego, who was not a part of the
research teams. “But I’d say it’s a turning point. We now have a reliable way
forward, and I think it’s fair to expect that we will find 20, 30, maybe more
such mutations in the next year or two.”
Other researchers were more cautious, saying that the genetics of rare mutations
was not yet well enough understood to make conclusive statements about their
effect on the behavior of specific genes.
“This is a great beginning, and I’m impressed with the work, but we don’t know
the cause of these rare mutations, or even their levels in the general
population,” said Dr. Aravinda Chakravarti of the Institute of Genetic Medicine
at the Johns Hopkins University Medical School, who was not involved in the
studies. “I’m not saying it’s not worth it to follow up these findings, but I am
saying it’s going to be a hard slog.”
The three research teams took a similar approach, analyzing genetic material
taken from blood samples of families in which parents who have no signs of
autism give birth to a child who develops the disorder. This approach gives
scientists the opportunity to spot the initial mutations that accompany the
condition, rather than trying to work though possible genetic contributions from
maternal and paternal lines. In all three studies, the researchers focused on
rare genetic glitches called de novo mutations.
De novo mutations are not inherited but occur spontaneously near or during
conception. Most people have at least one, and the majority of them are
harmless.
In one of the new studies, Dr. Matthew W. State, a professor of genetics and
child psychiatry at Yale, led a team that looked for de novo mutations in 200
people who had been given an autism diagnosis, as well as in parents and
siblings who showed no signs of the disorder. The team found that two unrelated
children with autism in the study had de novo mutations in the same gene — and
nothing similar in those without a diagnosis.
“That is like throwing a dart at a dart board with 21,000 spots and hitting the
same one twice,” Dr. State said. “The chances that this gene is related to
autism risk is something like 99.9999 percent.”
The team found that a third child had a de novo mutation in another gene
suspected of a possible link to autism risk — but one such mutation is not
enough to make the case.
But a team led Dr. Evan E. Eichler, a professor of genome sciences at the
University of Washington in Seattle, independently found the same thing in a
study of 209 families: one child with autism — and a glitch in the very same
gene.
The researchers added still another gene, finding two unrelated children with
autism in their own sample who had de novo mutations in the same location. No
such coincidences occurred among people in the studies who did not have an
autism diagnosis.
Finally — in the third paper — a team led by Mark J. Daly of Harvard ran its own
analysis of these three genes, among others, and found yet more cases.
Everyone typically has at least one de novo mutation, Dr. Daly said, but his
study suggested that “kids with autism have a slightly higher rate, on average,
and the effects are more severe.”
All three studies also found evidence that the risk of de novo mutations
increases with parental age. In an analysis of 51 de novo mutations, Dr.
Eichler’s group found that glitches were four times more likely to originate in
DNA from the male than from the female. The risk is higher in fathers at 35 than
at 25 and seems to creep up with age. This offers one possible explanation for
earlier research linking older fathers with autism’s rise: older male sperm is
more subject to small, perhaps random glitches that in rare cases affect brain
development.
The emerging picture suggests that the search for therapies will probably be a
very long one, and that what is known generally as autism may represent a broad
category of related but biologically distinct conditions. But both Dr. Eichler’s
and Dr. Daly’s groups found some evidence that high-risk genes interact in
shared biological processes.
“This is really the tip of the tip of the iceberg,” Dr. Eichler said, “but I
think the important thing is all of us agree on where to start.”
Dr. State added, “From my standpoint, this is a big deal, because I’ve been at
this a long time, and for years and years you couldn’t get anyone to believe
you’d even found one gene” that significantly increased risk.
January 31,
2012
The New York Times
By BENJAMIN NUGENT
Manchester,
N.H.
FOR a brief, heady period in the history of autism spectrum diagnosis, in the
late ’90s, I had Asperger syndrome.
There’s an educational video from that time, called “Understanding Asperger’s,”
in which I appear. I am the affected 20-year-old in the wannabe-hipster vintage
polo shirt talking about how keen his understanding of literature is and how
misunderstood he was in fifth grade. The film was a research project directed by
my mother, a psychology professor and Asperger specialist, and another expert in
her department. It presents me as a young man living a full, meaningful life,
despite his mental abnormality.
“Understanding Asperger’s” was no act of fraud. Both my mother and her colleague
believed I met the diagnostic criteria laid out in the American Psychiatric
Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth
Edition. The manual, still the authoritative text for American therapists,
hospitals and insurers, listed the symptoms exhibited by people with Asperger
disorder, and, when I was 17, I was judged to fit the bill.
I exhibited a “qualified impairment in social interaction,” specifically
“failure to develop peer relationships appropriate to developmental level” (I
had few friends) and a “lack of spontaneous seeking to share enjoyment,
interests, or achievements with other people” (I spent a lot of time by myself
in my room reading novels and listening to music, and when I did hang out with
other kids I often tried to speak like an E. M. Forster narrator, annoying
them). I exhibited an “encompassing preoccupation with one or more stereotyped
and restricted patterns of interest that is abnormal either in intensity or
focus” (I memorized poems and spent a lot of time playing the guitar and writing
terrible poems and novels).
The general idea with a psychological diagnosis is that it applies when the
tendencies involved inhibit a person’s ability to experience a happy, normal
life. And in my case, the tendencies seemed to do just that. My high school
G.P.A. would have been higher if I had been less intensely focused on books and
music. If I had been well-rounded enough to attain basic competence at a few
sports, I wouldn’t have provoked rage and contempt in other kids during gym and
recess.
The thing is, after college I moved to New York City and became a writer and met
some people who shared my obsessions, and I ditched the Forsterian narrator
thing, and then I wasn’t that awkward or isolated anymore. According to the
diagnostic manual, Asperger syndrome is “a continuous and lifelong disorder,”
but my symptoms had vanished.
Last year I sold a novel of the psychological-realism variety, which means that
my job became to intuit the unverbalized meanings of social interactions and
create fictional social encounters with interesting secret subtexts. By
contrast, people with Asperger syndrome and other autism spectrum disorders
usually struggle to pick up nonverbal social cues. They often prefer the kind of
thinking involved in chess and math, activities at which I am almost as inept as
I am at soccer.
The biggest single problem with the diagnostic criteria applied to me is this:
You can be highly perceptive with regard to social interaction, as a child or
adolescent, and still be a spectacular social failure. This is particularly true
if you’re bad at sports or nervous or weird-looking.
As I came into my adult personality, it became clear to me and my mother that I
didn’t have Asperger syndrome, and she apologized profusely for putting me in
the video. For a long time, I sulked in her presence. I yelled at her sometimes,
I am ashamed to report. And then I forgave her, after about seven years. Because
my mother’s intentions were always noble. She wanted to educate parents and
counselors about the disorder. She wanted to erase its stigma.
I wonder: If I had been born five years later and given the diagnosis at the
more impressionable age of 12, what would have happened? I might never have
tried to write about social interaction, having been told that I was hard-wired
to find social interaction baffling.
The authors of the next edition of the diagnostic manual, the D.S.M.-5, are
considering a narrower definition of the autism spectrum. This may reverse the
drastic increase in Asperger diagnoses that has taken place over the last 10 to
15 years. Many prominent psychologists have reacted to this news with dismay.
They protest that children and teenagers on the mild side of the autism spectrum
will be denied the services they need if they’re unable to meet the new, more
exclusive criteria.
But my experience can’t be unique. Under the rules in place today, any nerd, any
withdrawn, bookish kid, can have Asperger syndrome.
The definition should be narrowed. I don’t want a kid with mild autism to go
untreated. But I don’t want a school psychologist to give a clumsy, lonely
teenager a description of his mind that isn’t true.
Benjamin
Nugent, the director of creative writing
at Southern
New Hampshire University,
is the author
of “American Nerd: The Story of My People.”
January 31,
2012
The New York Times
By PAUL STEINBERG
WASHINGTON
Asperger syndrome and Aspies — the affectionate name that people diagnosed with
Asperger syndrome call themselves — seem to be everywhere.
Considered to be at the high-functioning end of the autism spectrum, Asperger
syndrome has become more loosely defined in the past 20 years, by both the
mental health profession and by lay people, and in many instances is now
synonymous with social and interpersonal disabilities. But people with social
disabilities are not necessarily autistic, and giving them diagnoses on the
autism spectrum often does a real disservice. An expert task force appointed by
the American Psychiatric Association is now looking into the possibility of
changing the way we diagnose Asperger. True autism reflects major problems with
receptive language (the ability to comprehend sounds and words) and with
expressive language. Pitch and tone of voice in autism are off-kilter. Language
delays are common, and syntactic development is compromised; in addition, there
can be repetitive motor movements.
Eventually, biological markers, now in the beginning stages of development, will
help in separating autism-spectrum disorders from social disabilities. For
example, researchers at the University of Pittsburgh Medical Center have
recently developed three-dimensional brain scans that look at brain wiring. In
preliminary studies people with autism-spectrum disorders appear to have too
much wiring and disorganized wiring in areas involved with language acquisition.
Nevertheless, children and adults with significant interpersonal deficits are
being lumped together with children and adults with language acquisition
problems. Currently, with the loosening of the diagnosis of Asperger, children
and adults who are shy and timid, who have quirky interests like train schedules
and baseball statistics, and who have trouble relating to their peers — but who
have no language-acquisition problems — are placed on the autism spectrum.
In recent years speculation has abounded that Albert Einstein must have had
Asperger syndrome. Christopher Hitchens speculated that his intellectual hero
George Orwell must have had Asperger. Indeed, Orwell had major problems fitting
in at British preparatory schools — not surprisingly, he hated the totalitarian
tenor of teachers and school administrators — but someone on the autism spectrum
could probably never have become a police officer in Lower Burma, as Orwell did.
Similarly, writers like Charles Morris have noted that Warren Buffett is thought
to have a condition on the autism spectrum, presumably Asperger syndrome.
A 1992 United States Department of Education directive contributed to the
over-diagnosis of Asperger syndrome. It called for enhanced services for
children diagnosed as being on the autism spectrum and for children with
“pervasive developmental disorder — not otherwise specified (P.D.D.-N.O.S.),” a
diagnosis in which children with social disabilities could be lumped. The
diagnosis of Asperger syndrome went through the roof. Curiously, in California,
where children with P.D.D.-N.O.S. were not given enhanced services,
autism-spectrum diagnoses did not increase. Too little science and too many
unintended consequences.
The downside to this diagnosis lies in evidence that children with social
disabilities, diagnosed now with an autism-spectrum disorder like Asperger, have
lower self-esteem and poorer social development when inappropriately placed in
school environments with truly autistic children. In addition, many of us
clinicians have seen young adults denied job opportunities, for example in the
Peace Corps, when inappropriately given a diagnosis of Asperger syndrome instead
of a social disability. George Orwell might never have been able to write his
brilliant essay about the shooting of an elephant if Asperger syndrome had been
part of his permanent medical record.
Given that humans are social animals, interpersonal intelligence is perhaps the
most important natural human skill — as valuable as or more valuable than
verbal-linguistic intelligence and logical-mathematical intelligence (to use the
terminology of the Harvard psychologist Howard Gardner), the skills focused on
in school. Social disabilities are not at all trivial, but they become cheapened
by the ubiquity of the Asperger diagnosis, and they become miscast when put in
the autism spectrum.
In his 2009 book “Parallel Play,” Tim Page, a former music critic for The
Washington Post, describes his relief in being given an Asperger syndrome
diagnosis as an adult and thus having an explanation for his longstanding social
difficulties. But the rubric of a “social disability” would be more accurate
than “autism spectrum” for people like Mr. Page, and potentially just as
relieving. In addition, adults and children who have normal expressive and
receptive language skills can benefit more fully from social-skills programs
than adults and children with true autism. In fact, Tim Page learned a large
measure of his social skills from an Emily Post course, just as Warren Buffett
credits a Dale Carnegie program with changing his life.
For Mr. Buffett and Mr. Page, these social skills do not come naturally and
automatically. But these men are able to compensate more completely than a truly
autistic child or adult whose language deficiencies and cognitive deficits can
often put him at a level of functioning in the mentally retarded range.
Many people, now inappropriately labeled as Aspies, make the world a richer,
more interesting place. Their quirky absorptions in, say, physics, baseball
stats or investment strategies add enormously to human advancement. Unlike
adults with a Peter Pan syndrome who never move beyond adolescence, children and
young adults with significant social disabilities tend to grow quite effectively
into their adult lives. Their seriousness and singularity of focus fit more
compatibly with the interests of older adults rather than the interests of their
childhood or young adult peers.
For better or worse, though, Asperger syndrome has become a part of our cultural
landscape. Comments about a person’s having “a touch of Asperger’s” seem to be
part of everyday conversations. Even an episode of “South Park” last year was
devoted to Asperger syndrome. We can only hope that better physiological markers
distinguishing between the autism-spectrum disorders and pure social
disabilities can stem this tide of ever more pathologizing.
But, as Martha Denckla, a pediatric neurologist at Johns Hopkins University, has
lamented, the only Americans in the future who will perhaps not be labeled as
having a touch of Asperger syndrome will be politicians and lobbyists. Members
of the political establishment may have other kinds of psychopathology; but,
unlike the rest of us, they at least cannot be thought of as Aspies.
“Autistic and Seeking
a Place in an Adult World” (front page, Sept. 18) painted a poignant picture
of a dilemma facing over three million Americans today — what happens when my
child with autism becomes an adult with autism?
For decades, autism’s focus has centered mostly on young children, with shocking
increases in prevalence announced on a regular basis. This “autism boomlet” is
now entering adulthood in droves, placing significant demands on already
strained social systems as well as families who have struggled to help their
children attain the best outcomes possible.
Autism today is one of the most important public health challenges facing our
nation. That’s why Congress is soon expected to reauthorize the Combating Autism
Act so the rapidly growing field of autism scientists can continue searching for
answers.
Until those answers are found, we must help adults with autism like Justin
Canha, 22, featured in your article, become valued members of our community.
People with autism are no different from anyone else — they want a job, a home
and friends.
SUZANNE WRIGHT
BOB WRIGHT
Co-founders, Autism Speaks
New York, Sept. 20, 2011
To the Editor:
Your article points out the many problems faced by young adults as they make the
transition from richly funded school programs to a world where there is no
mandate to pay for programs for them. The day a person with a disability turns
22, funding for them is drastically curtailed and in some cases disappears
altogether.
In this fiscal environment it is extremely difficult to provide the kind of
individual supports needed to place and keep adults with significant cognitive
challenges in meaningful employment.
It is unrealistic to think that employers have the time or the resources to
train these young people. And yet these same young people, as the article points
out, have skills and talents that could be harnessed not only to support
themselves but also to serve as a resource to employers and the community.
Any revamping of Medicaid should include looking at how to improve funding for
our citizens with cognitive challenges so that they can fully participate in the
world of work and live as independently as possible.
SHARON B. RAIMO
Washington, Sept. 19, 2011
The writer is chief executive of St. Coletta of Greater Washington, a special
education school.
To the Editor:
As the parent of an adult child with autism and executive director of Autism
Works, I applaud your article for providing a realistic view of the struggles we
face helping our loved ones gain their independence. Justin Canha’s situation
reflects the growing need to develop services that appropriately help him and
others reach their employment goals.
Justin is a gifted artist whose talents can be a boon for businesses. Rather
than looking at disabilities, we need to learn to look at each individual’s
abilities, investigate the whole person, and draw on the skills, talents and
special interests around which successful outcomes are created.
Let’s embrace a diverse work force and capitalize on the great gifts and talents
people of all types provide. It’s good for people like Justin, and it’s good for
all of us.
MELISSA KENIG
Edina, Minn., Sept. 19, 2011
To the Editor:
The young adult with autism profiled in your article, Justin Canha, has had
parental, educational, employment and community resources to support him.
Unfortunately, many children with autism do not have access to all these
resources, and children who are not as functional as Justin need even more help.
It is time for policy makers to realize that austerity measures are
counterproductive when it comes to investing in resources for those with autism
and other developmental disorders. Not only are such measures coldhearted, but
they also end up costing society more financially because higher levels of care
will be necessary to support such individuals.
Moreover, increased investment in research to develop better interventions in
autism will have the most profound payoffs. These two parallel approaches —
increased resources for families and for research — will ensure that society
will fully enjoy the unique contributions of individuals with autism spectrum
disorder.
JOSEPH BUXBAUM
New York, Sept. 19, 2011
The writer is director of the Seaver Autism Center for Research and Treatment at
Mount Sinai School of Medicine.
September
17, 2011
The New York Times
By AMY HARMON
MONTCLAIR,
N.J. — For weeks, Justin Canha, a high school student with autism, a love of
cartoons and a gift for drawing, had rehearsed for the job interview at a local
animation studio.
As planned, he arrived that morning with a portfolio of his comic strips and
charcoal sketches, some of which were sold through a Chelsea gallery. Kate
Stanton-Paule, the teacher who had set up the meeting, accompanied him. But his
first words upon entering the office were, like most things involving Justin,
not in the script.
“Hello, everybody,” he announced, loud enough to be heard behind the company
president’s door. “This is going to be my new job, and you are going to be my
new friends.”
As the employees exchanged nervous glances that morning in January 2010, Ms.
Stanton-Paule, the coordinator of a new kind of “transition to adulthood”
program for special education students at Montclair High School, wondered if
they were all in over their heads.
Justin, who barely spoke until he was 10, falls roughly in the middle of the
spectrum of social impairments that characterize autism, which affects nearly
one in 100 American children. He talks to himself in public, has had occasional
angry outbursts, avoids eye contact and rarely deviates from his favorite
subject, animation. His unabashed expression of emotion and quirky sense of
humor endear him to teachers, therapists and relatives. Yet at 20, he had never
made a true friend.
People with autism, whose unusual behaviors are believed to stem from variations
in early brain development, typically disappear from public view after they
leave school. As few as one in 10 hold even part-time jobs. Some live in
state-supported group homes; even those who attend college often end up
unemployed and isolated, living with parents.
But Justin is among the first generation of autistic youths who have benefited
throughout childhood from more effective therapies and educational
opportunities. And Ms. Stanton-Paule’s program here is based on the somewhat
radical premise that with intensive coaching in the workplace and community —
and some stretching by others to include them — students like Justin can achieve
a level of lifelong independence that has eluded their predecessors.
“There’s a prevailing philosophy that certain people can never function in the
community,” Ms. Stanton-Paule told skeptics. “I just don’t think that’s true.”
With some 200,000 autistic teenagers set to come of age in the United States
over the next five years alone, little is known about their ability to
participate fully in public life, or what it would take to accommodate them.
Across the country, neighbors, employers, colleagues and strangers are warily
interacting with young adults whose neurological condition many associate only
with children.
Some advocates of “neurodiversity” call this the next civil rights frontier:
society, they say, stands to benefit from accepting people whose brains work
differently. Opening the workplace to people with autism could harness their
sometimes-unusual talents, advocates say, while decreasing costs to families and
taxpayers for daytime aides and health care and housing subsidies, estimated at
more than $1 million over an adult lifetime.
But such efforts carry their own costs. In this New York City suburb, the school
district considered scrapping Ms. Stanton-Paule’s program almost as soon as it
began, to save money on the extra teaching assistants who accompanied students
to internships, the bank, the gym, the grocery store. Businesses weighed the
risks of hiring autistic students who might not automatically grasp standard
rules of workplace behavior.
Oblivious to such debates, many autistic high school students are facing the
adult world with elevated expectations of their own. Justin, who relied on a
one-on-one aide in school, had by age 17 declared his intention to be a “famous
animator-illustrator.” He also dreamed of living in his own apartment, a goal he
seemed especially devoted to when, say, his mother asked him to walk the dog.
“I prefer I move to the apartment,” he would say, reluctantly setting aside the
notebook he spent hours filling with tiny, precise replicas of every known
animated character.
“I prefer I move to the apartment, too,” his father, Briant, a pharmaceutical
company executive, replied on hard days.
Over the year that a New York Times reporter observed it, the transition program
at Montclair High served as a kind of boot camp in community integration that
might also be, for Justin, a last chance. Few such services are available after
high school. And Justin was entitled to public education programs, by federal
law, until only age 21.
Ms. Stanton-Paule had vowed to secure him a paid job before he left school — the
best gauge, experts say, of whether a special needs student will maintain some
autonomy later in life. She also hoped to help him forge the relationships, at
work and beyond it, that form the basis of a full life.
But more prosaic lessons arose at every turn: when he should present money at
the pizza place (not until after he ordered), how close to stand to the person
using the weight machine he wanted at the gym (not so close), what to say when
he saw a co-worker drinking a Coke (probably not “Coca-Cola is bad for your
bones”). Often, Ms. Stanton-Paule and her staff seemed to spend as much time
teaching the residents of Montclair about Justin as teaching him the tasks at
hand.
“Don’t tell me, tell him,” they directed cashiers. “We need your help to make
this work,” they pleaded with potential employers. “Justin has autism,” Ms.
Stanton-Paule explained to librarians, the manager at the animal shelter,
students at the local college. “How he communicates might be different from what
you’re used to.”
For his part, Justin sometimes flagged in his pursuit of autonomy. “When do I
retire from this?” he asked of drills in phone etiquette. But he never stopped
trying, sometimes warbling the theme song to his favorite movie, “Pinocchio,” as
a means of soothing himself.
“When you wish upon a star,” he sang, “makes no difference who you are.”
“Pinocchio,” he informed anyone who asked, “is about a wooden puppet who was
brought to life by a blue fairy and goes through mischief and mayhem so he can
be approved to be a real boy.”
If he recognized himself in Pinocchio’s classic quest for acceptance, Justin did
not say it in so many words.
Family That
Won’t Take ‘No’
Justin’s adulthood had been looming for his parents, Briant and Maria Teresa
Canha, ever since he was given his diagnosis in 1993 at age 3. Like many parents
of autistic children before them, they wondered what would become of their son,
who threw frequent tantrums, looked straight through them and did not answer to
his name.
But some things were changing for the better. The explosion of research that
followed the formal recognition of autism as a psychiatric diagnosis in 1980
underscored its biological basis, lifting some of the stigma that persisted
through the 1970s, when bad mothering was often blamed for the condition’s mix
of social impairments and circumscribed, repetitive behaviors.
And Justin’s parents were not alone. As the condition’s hallmark behaviors
became better recognized, many children who were previously designated as
mentally retarded or just dismissed as strange were being given an autism
diagnosis, a trend that has continued. Some experts also believe that the actual
number of people with autism has been climbing.
Even now, autism’s root causes remain unknown; many genetic and environmental
factors are believed to contribute to its different forms and degrees of
severity. Justin, for example, is unusually sensitive to noise; others are
uncomfortable with light or touch. Some are physically aggressive, others
withdrawn. About half score low on I.Q. tests, a handful are savants, and many,
like Justin with his drawing, shine brightly in one particular area and stumble
in others.
But emboldened by the growing understanding of what it means to be autistic,
parents in the 1990s were increasingly demanding full access to education for
their children and searching for ways to help them.
Many interventions the Canhas tried — gluten-free diets, neurofeedback therapy,
high doses of vitamin B6 powder — made no apparent difference. A trip to Israel
“to swim with those sweet bottle-nosed dolphins,” as Justin later described it,
was a boon for a boy whose affection for animals contrasted with the
indifference he showed people, but it yielded no breakthroughs.
Months of intensive language and cognitive therapy at age 4, however, did seem
to help Justin, who learned a few words in sign language. To communicate with
him, Justin’s brother, Julian, 18 months older, learned them, too.
If Briant occasionally raised an eyebrow at his wife’s tireless trial and error,
he never held her back. He could not bring himself to have the third child she
wanted, unwilling to risk another with autism. But the decision made the search
all the more pressing: Julian, they knew, might one day be his brother’s sole
caretaker.
The family had been living in Europe, where Briant had a promising career in
international business and Maria Teresa, the daughter of a Brazilian diplomat,
had embraced an expatriate lifestyle. There Justin found some comfort drawing
characters from the Disney videos he watched incessantly; at 5, he littered the
Canha home with hundreds of likenesses of Dumbo, Simba and a “Jungle Book”
favorite, Baloo the Bear.
But when Justin was in first grade, near Munich, his tantrums became so frequent
that he was often removed from the classroom. For months, he would eat only
grilled cheese sandwiches. A generation earlier, his parents might have placed
Justin in an institution. Instead, the Canhas returned to the United States in
1997 to look for better services.
The realization that Justin was among the most severely impaired in the
classroom set aside for children with autism in their new Florida school
district was a blow to his mother, already battling depression. But with help
from a new form of behavioral therapy that would prove to be one of the few
effective interventions for some with the condition, Justin’s tantrums subsided.
With positive reinforcements for small tasks, Justin was coaxed by his
therapists to answer questions like “what did you do today?” by drawing,
providing a first glimpse of the confusion behind his outbursts, as well as his
sense of humor.
The day a teacher at school took his markers away, he drew himself crying on a
long, winding road home. After his father returned from a fishing trip, Justin
drew a “bad dream”: his own body on a plate, a fish above him with knife and
fork, ready to dig in. By the time the Canhas moved to be near family in
Providence, R.I., Justin, 9, had taken the top award in a cartooning contest for
students in kindergarten through 12th grade. His diet, still devoid of all
vegetables, had expanded. He spoke a few short phrases.
And by the time Briant was offered a job in northern New Jersey a year later,
Maria Teresa had learned of “inclusion,” a practice that allowed students with
disabilities to participate fully in mainstream classes. Said to produce better
academic outcomes for such students and instill compassion in their classmates,
it held the chance for Justin, his mother believed, to learn the social language
that was still so foreign to him.
It took a year to find a public school that would take Justin on those terms;
over the 1990s, federal courts had ruled that districts must try to integrate
students with disabilities, but gave them discretion. Three superintendents told
his mother without even meeting Justin that they would bus him to a specialized
private school.
But in Montclair, her plea to have her son educated in the community where she
hoped he would one day work and live had been sounded by other parents just a
year earlier. Having already trained teachers and adapted material so that six
middle school children with other special needs could attend regular classes,
there was no reason, the superintendent agreed, not to accommodate Justin.
A
Celebrity, of Sorts, in School
The move to Montclair in 2002 took its toll on Justin, who clung to routine. In
his high-pitched singsong, he ticked off to himself each place the Canhas had
lived. “Five moves,” he said. “I hate it.” With a new cognitive behavior
therapist, he practiced making eye contact and strategies to stanch the steady
stream of “self-talking” that drew stares even as it soothed his anxiety.
Alone in his room, he filled composition books with a vast cast of miniature
characters, drawing swiftly with a mechanical pencil that he sharpened after
every two strokes. He learned the release date of every Disney film, its
animators, its voiceover stars and whether it was “one of the best movies of all
time” or “bombed at the box office,” both outcomes he proclaimed with relish. He
memorized entire episodes of “The Simpsons” and “Family Guy.”
And with new computer software, he developed his own cartoon animations and a
comic strip called “Jickey and Fanky” about a fox and a wolf that sometimes took
on a decidedly personal twist. In “Jickey Goes to Behavior Therapy,” for
instance, Dr. Fanky P. Wolf gets his eyes gouged out by his patient, Jickey,
whom he is prodding to make eye contact.
When Maria Teresa probed his feelings, Justin brushed her off.
“Don’t be curious,” he told her in what became an oft-used refrain. “Don’t be
interested.”
But at his new middle school, Justin’s autistic qualities earned him a kind of
celebrity status. His classmates stifled smiles when he yelled “You’re fired!”
at an unpopular teacher, and the novelty of his composition book served as a
social bridge.
“I drew Baloo from ‘The Jungle Book,’ ” he would say to fellow students, opening
to a page. “Do you like ‘The Simpsons’? What’s your favorite character?”
If he did not exactly have friends, he had admirers.
With simplified copies of school books and an aide to keep him focused, Justin
participated in the same lessons as his peers, often using art to complete
assignments. And when the Ricco Maresca gallery sold more than a dozen of his
drawings for as much as $4,000 each at the Outsider Art Fair in Manhattan
shortly after Justin entered high school, the Canhas allowed themselves the
thought that he might one day support himself through his art.
The family paid for mentoring sessions with an art facilitator and arranged a
tour of Pixar Animation Studios in California, where Justin informed the guide,
“I am in heaven here.”
Julian, by phone from the University of Michigan, where he was attending
college, voiced concern. “You’re investing so much in Justin’s art career,” he
told his mother. “What if that doesn’t work out?”
But meeting regularly with Justin’s family, under the new requirements of a
civil rights law called the Individuals With Disabilities in Education Act,
school officials encouraged him to pursue independence. The term became a mantra
of sorts for the Canhas. For Justin, like any adolescent, it seemed the key to
freeing himself from his parents’ grip — and from the very activities designed
to help him reach that goal.
“Mom, when is the last day of Dr. Selbst?” Justin asked on the weekly trips to
the cognitive behavior therapist.
“Well, Justin, what’s the goal?” his mother asked. “Why do we go to Dr. Selbst?”
“Independence,” Justin sighed, turning on classical music on his iPod and
settling in for the ride.
At bustling Montclair High, where Justin wore giant ear protectors to block out
hallway noise, he faced a less gentle side of inclusive education. A gym teacher
threw him out when the murmur of his self-talking broke an order for “total
silence.” His middle school fans shrugged him off when he approached with his
composition book. “They’re busy,” Justin reported when his mother asked if he
ever had lunch with classmates or wanted to invite anyone over.
Some students purposely set off Justin’s emotional outbursts. “Kill Elmo,” they
whispered, aware of his fascination with Internet videos portraying the demise
of the popular “Sesame Street” character. “Why?” Justin would exclaim, sometimes
loud enough to get sent to the principal’s office. “Why kill Elmo? Why?”
He still had trouble with basic math, and with understanding someone else’s
point of view. His speech was halting, almost formal, and he never asked a
reciprocal question in conversation except when prompted. He bristled at
criticism, particularly of his artwork (“No opinions, please” was a Justinism
his teachers knew well).
Yet by senior year, Justin had, in his way, assimilated. He had traded the
earmuffs for discreet earplugs. He had railed against racism in a social justice
class (“It’s not fair!”) and cultivated his skill in posing provocative
questions that would get a rise out of classmates. “Why is it not OK,” he often
wondered aloud of the adviser of the school cartoon club, “to say ‘Mr. Tucker is
a sucker?’ ”
And sometimes, the rules bent his way. Justin’s aide braced herself when he
raised his hand one day in a class that had focused for several months on
Africa. The students had just finished reading a book on apartheid.
“Mr. Moore,” Justin complained, “I’m tired of learning about sad black people.”
The teacher, who was black, turned around.
“You know what, Justin?” he said. “Me too.”
Justin would walk with his classmates at graduation in June 2009. But at 19, he
would be staying on for two years devoted to preparing for adult life. That
spring, Ms. Stanton-Paule asked him to design a poster to present at a
leadership conference for students with disabilities.
“If you could achieve anything, what would it be?” she challenged him.
He contemplated the outline she gave him: in a bubble at the top, he was to
write his vision of the future. On steps leading to his goal, he would write his
course of action.
On graduation day, he dressed in a cap and gown. As he paced in the overheated
hallway, talking loudly to himself, his classmates calmed him. When they marched
out on stage together, they made sure he took his place in line.
A Teacher’s
Mission
Before Justin joined her program, Ms. Stanton-Paule drove her teaching
assistants to a low-slung building near the high school known as a “sheltered
workshop.” There, in a windowless room, people with autism and other
developmental disabilities sorted colored combs and placed them in plastic bags.
They were paid by the piece at sub-minimum wage rates, based on how fast they
performed compared with the prevailing rate for nondisabled workers.
Some family members see such government-subsidized facilities as safe,
productive alternatives to keeping disabled adults idle at home. Others
criticize them as a form of segregation, where people cannot reach their
potential.
To Ms. Stanton-Paule, the workshop represented one of the grim realities her
students might face should they fail to find real jobs before leaving school.
And for Justin, the stakes were particularly high. Post-high-school programs
that have had some success in placing adults with disabilities like Down
syndrome in rewarding jobs are often ill suited for those with autism, whose
challenges center more on social and communication barriers than basic cognitive
functioning.
“School is over when it’s over,” Ms. Stanton-Paule told her assistants. “And
then it’s like, life.”
Like all of the nation’s public school districts, Montclair was required by
federal law to provide some kind of transition program to prepare special
education students to live independently. As in many schools, Montclair had
traditionally assigned them to a classroom equipped with appliances, so they
could practice skills like cooking and folding laundry. Some also worked in town
a few hours a week.
But in the fall of 2008, Ms. Stanton-Paule had moved nine such students out of
the school building entirely and into the town. Individually supervised, they
shopped for food, went to the gym and worked at the local businesses that
provided internships in response to her combination of charm, persistence and
offers of free labor.
The approach, sometimes called “community-based instruction,” is widely viewed
by educators as the best way to prepare special needs students to navigate
real-life settings. But the federal government, which pays states extra for
their education, does not require that school districts track which students are
employed in the years after they leave school to determine the relative success
of different transition programs.
And experts say few schools implement programs based fully in the community,
which require a type of very public teaching for which there is little training.
“We’re asking teachers to get out of the classroom,” said Dan Baker, a
pediatrics professor at the Robert Wood Johnson Medical School who was hired by
New Jersey’s Education Department to promote the model to its own schools. “That
is not necessarily in their comfort zone.”
Deceptively calm, with straight blond hair and an unflinching green gaze, Ms.
Stanton-Paule, 49, had long championed the approach: a decade earlier she had
found jobs for several special needs students who still worked in town, at a
hair salon, at the library, at the Y.M.C.A. The same group of activist parents
who had inspired the Canhas’ move to Montclair had requested that Ms.
Stanton-Paule be hired back when their children reached high school, and another
teacher, Leslie Wallace, quickly volunteered to be her co-director. The program,
they argued, could serve even the students most severely affected by autism and
other disabilities.
But others saw them as overly idealistic.
The vice provost at Montclair State University, for example, suggested at a
meeting that it would not be in the best interest of Ms. Stanton-Paule’s
students to audit college classes, even if the institution had resources to
handle them. “This is a competitive environment,” she told the teacher.
And a year after she started the community-based program, Ms. Stanton-Paule was
already clashing with administrators about whether they would assign enough
teaching assistants, at a cost of about $20,000 per student, to continue it.
Regardless of the expense, some school officials were not convinced the program
was right for students who needed so much help just to navigate high school. One
student “was lost in the school building the other day,” a colleague pointed
out. “Do you really think she’s going to be safe in the community, Kate?”
As for Justin, another colleague warned her, “The world can be a rough place.”
“People out there will help Justin,” insisted Ms. Stanton-Paule, who has a
master’s degree in special education and rehabilitation psychology. “We’ll show
them how.”
The Canhas were counting on it. Their quest for inclusive education had all been
aimed at enabling Justin’s independence. But so far, the only place he went by
himself was the volunteer job Ms. Stanton-Paule had set up at the Montclair
Township Animal Shelter — where he excelled, as it turned out, at “socializing”
stray cats.
“Please stand by us,” Justin’s mother pleaded in an e-mail to school
administrators, who ultimately reinstated the program’s teaching assistants.
“What we have achieved so far would be lost if Justin could not continue to be
supported as he has been in Montclair.”
The morning he was to present his “Dream” poster at the statewide conference at
a local college, Justin buzzed with excitement.
“O.K., Kate, when am I going to talk about my poster?” he demanded. Finally, he
stood before a room filled with several dozen students, teachers and local
television news reporters and held it up. On the lower steps of the poster, he
had written “learn how to take the bus.” At the top, he had drawn himself at a
drafting table, in a jacket and tie, with a red-brick apartment building.
“Famous animator-illustrator” he had written, and, on the step marked 2014,
“move to the apartment.”
In large blue letters, he had also written the word “Single.” “Marriage,” he
said, drawing out his words in his exaggerated style, “is too comp-li-cat-ed.”
Ms. Stanton-Paule, listening, thought, “Don’t be so sure.”
Working
Toward a Dream Job
It had taken months for Ms. Stanton-Paule to persuade Randy Rossilli, the
president and founder of the start-up animation studio Nightstand Creations, to
meet Justin.
“Call me next week,” Mr. Rossilli, whose company had won a regional Emmy for a
children’s show, told her over the fall of 2009.
There were other disappointments that fall as the teachers sought internships
for Justin, promising on-the-job support that would fade only when everyone was
ready. The supervisor at the public library where Justin volunteered to shelve
books gave him high marks for accuracy, but budget cuts meant there would be no
paid position. Artware, a store that made custom T-shirts and coffee mugs,
declined to take him on.
“I can’t do it, Kate,” said Diana Polack, the owner, who had recently employed
someone with disabilities and found the extra attention he required too costly.
Justin’s other volunteer job, assisting an elementary school art teacher, was
initially going well. The first graders delighted in his deft animal sketches,
and he laid down the law with a moral clarity that might be attributed to his
autism.
“Children,” he told students snickering at one boy’s drawing. “Stop being mean.
Be kind.”
The art teacher, Kathleen Cooney, who had had some trepidation about Justin’s
internship, started to relax. But one afternoon in December, when Justin
repeatedly mentioned the coming Christmas holiday to his students, Ms. Cooney
asked him to stop talking about religion at school.
“Well, I believe in Jesus Christ, and I want to say ‘Merry Christmas,’ ” he
insisted. “Why it is not O.K. to say ‘Christmas?’ Why?”
He paced in the hall, his self-talking growing louder. He made explosion sounds.
Ms. Cooney summoned Ms. Stanton-Paule to help calm Justin.
It was when rules of social behavior rang false to him, Ms. Stanton-Paule
suspected, that he found them especially hard to grasp. But later that month,
she saw a new empathy in her student when she accompanied Justin to distribute
holiday cards he had hand-made for colleagues.
“I’m not allowed to say ‘Merry Christmas,’ Marilyn,” Justin said abruptly to one
of the librarians, thrusting a card at her. “So, happy holidays.”
He turned to walk away as she started to thank him.
“Justin,” Ms. Stanton-Paule said with unusual sharpness, “I think Marilyn was
speaking.”
He stopped.
“I appreciate that you said ‘happy holidays,’ Justin,” the librarian said
calmly, “because I celebrate Hanukkah.”
“Oh,” he said, as though it had never occurred to him. “Happy Hanukkah then.”
And when Mr. Rossilli finally agreed to meet on that cold morning in January
2010, in an office with posters of Mickey Mouse on the wall, Justin was better
prepared than he had ever been.
“Hi, Randy,” he said, sticking out his hand. “What is your favorite Disney
animation?”
Mr. Rossilli did not miss a beat. “My favorite Disney animated film was ‘Jungle
Book,’ and my favorite character of all time is Baloo the Bear,” he answered.
“ ‘Jungle Book’ is a great Disney animated film,” Justin concurred. “It was
released in 1969.”
“As a matter of fact, let me show you how much I love the film,” Mr. Rossilli
said, rolling up his sleeve to reveal a tattoo of Baloo.
“Oh,” Justin said reverently, reaching out his hand to touch it. “That’s
beautiful.”
With Ms. Stanton-Paule and Ms. Wallace on the sofa beside their student, Mr.
Rossilli flipped through Justin’s portfolio and his composition book, trying to
ignore the feeling that he was interviewing a star who had come with his
manager.
“How do you keep your focus when you’re doing your art?” he asked.
“I don’t know,” Justin replied, staring off at the Mickey Mouse poster.
Ms. Stanton-Paule forced herself to remain silent.
Then Justin looked his potential first boss in the eye. “I use my brain,” he
said.
Mr. Rossilli was impressed with Justin’s passion for a craft he loved himself.
But his offer of a two-day-a-week unpaid internship was a business decision. The
company was developing a property called “Tinosaurs.” There was no doubt that
Justin could draw tiny, and he just might have the attention to detail it would
take to learn animation.
“We’ve got the same haircut,” Mr. Rossilli joked at the end of the meeting.
“People might think you’re a better-looking version of me.”
“Yeah,” Justin agreed, unaware that he was teasing.
Mr. Rossilli smiled. Somehow, it made him all the happier to give Justin a
chance.
Finding His
Own Voice
Justin had long relied on his mother for direction, and few were more tenacious
advocates. Maria Teresa and her husband had divided up their labor, relying on
Briant’s job, which required frequent travel, for income, while she focused on
their son. Even as Justin’s internship began at Nightstand, she was pressing his
portfolio into the hands of an acquaintance at “Sesame Street.”
But as the snow melted in the spring of 2010, Justin began to develop what Ms.
Wallace called “his own voice.” His teachers encouraged it.
Maria Teresa, for instance, encouraged Justin to pack his lunch.
“Do you want to buy lunch sometime?” Ms. Stanton-Paule asked Justin one morning.
Several of the other students went to local restaurants during their breaks.
“I like to buy lunch, but Maria Teresa forbids me,” Justin replied in his formal
way, exaggerating slightly for effect.
“Yeah, but whose life is it?” Ms. Stanton-Paule asked.
“Mine!” Justin said.
On another occasion, he complained about his after-school schedule, packed with
therapy and social skills classes.
“Kate, I dislike Maria Teresa’s opinion sometimes,” he said. “I prefer to foil
her plans.”
“Well, you need to tell her, Justin,” Ms. Stanton-Paule said. “You have to say,
‘I would rather do it at a different time.’ ”
Justin spoke his mind, too, in a cartooning class he was auditing at Montclair
State University (Ms. Stanton-Paule quietly helped him enter through the
college’s program for the gifted, avoiding the provost’s objections). One
classmate credited Justin’s suggestion that she use Porky Pig in an illustration
of swine flu with making her project funnier and improving her grade.
And if Nightstand was not the permanent job they had all hoped for, it was a
work experience that could not have been replicated in school.
Justin’s teachers taught him to take the public bus to the office, first
accompanying him and then spying from afar. Since he did not talk to himself
when he listened to music, Ms. Stanton-Paule coached him to avoid drawing
hostile looks by turning on his iPod.
Ms. Wallace advised him on his dress.
“You look like a geek, Justin,” she told him when he pulled his pants up too
high one day.
“A geek!” Justin exclaimed, fascinated. “Why do I look like a geek?”
“Let your pants ride,” she said, and he pushed them down on his hips.
Most days, Justin remembered to greet his colleagues by name and to ask, “How
was your weekend?” Next came a lesson in following up. How about, Ms.
Stanton-Paule suggested, “Did you have a good time?”
Because Justin could be overwhelmed by verbal information, Ms. Stanton-Paule
asked his co-worker and chief tutor, Javier Manzione, 30, to sit next to him
with his computer and encouraged him to refocus Justin when necessary. “You’re
not hurting his feelings,” she assured him.
Over the following weeks, Justin learned to animate an arm, to lip-sync a
character’s voice and, perhaps just as importantly, to make small talk with
colleagues. It helped that their interest in animation was as genuine as his.
One afternoon, Mr. Manzione heard Justin muttering lines from “Family Guy.” “Was
that the episode they were on the couch throwing up in the living room?” he
asked.
“Yes!” Justin answered, surprised. No one had ever interrupted his self-talking
before except to tell him to stop.
He completed every assignment he was given and was the only one to complain when
a snow day forced the office to close. But when Justin came in for a morning
entirely on his own, he yawned, used the bathroom several times and was unable
to focus, Mr. Rossilli reported to Ms. Stanton-Paule. And small disruptions to
routine threatened his growing social confidence.
One Tuesday morning, for instance, he marched up the steps to the high school to
meet Ms. Stanton-Paule before going to work, unaware that standardized tests
were being given that day. Ignoring the man with a “volunteer” badge at an
official-looking table near the entrance, he turned down the hall.
“Can I help you?” the man asked testily.
Oblivious to the subtle signals that carry so much social meaning — a tone of
voice, a furrowed brow — Justin took the question literally. “I don’t need your
help,” he said.
“Yes, you do,” the man replied, his voice rising. Justin, with his dark buzz cut
and large backpack, appeared to be just another test-taker arriving late — and
rude to boot. “Do you have ID?”
“I don’t have ID because I graduated,” Justin proclaimed proudly. “I’m here to
see Kate Stanton-Paule.”
A guard hearing the ruckus advised him, not unkindly, to come back another time.
But when Justin, outside, called Ms. Stanton-Paule’s cellphone, as she had
taught him to do in emergencies, he grew confused by her voicemail and hung up.
“I am waiting patiently,” he informed a snowdrift.
For Ms. Stanton-Paule waiting inside, the episode was among the most
nerve-racking in the program so far. Her boss, Dr. Keith Breiman, who supervised
special education at the high school, was the one to spot Justin kicking the
snow outside his window.
“Kate,” Dr. Breiman said, delivering him to the meeting room. “I believe Justin
was looking for you.”
Practicing
for Independence
When Ms. Stanton-Paule visited Florida with her family the following month, she
received a message from Justin.
“Hello,” it said. “I wanted to talk to Kate about — how is, uh, how is — how is
the day, in Florida? See you later!”
Weeks of cellphone practice had paid off. Later that month, when Justin’s
parents drove to Michigan for Julian’s college graduation, leaving Justin alone
for the first time, he promised to keep in touch by texting, his new preferred
mode of communication. “Why are you interrupting my independence?” he asked his
mother when she called from the road.
Less successful were the friendships Ms. Stanton-Paule had sought to foster with
other students in the program. Fearing that Justin would not leave his room all
weekend, the Canhas paid one of his teaching assistants to meet him at
Starbucks. Told that they were to meet “for a drink,” Justin had his drink and
immediately departed.
He was more interested in completing his latest “Tinosaur” sketch for Mr.
Rossilli — a kind of “Where’s Waldo?” with dinosaurs. His first rendition had
too much white space, Mr. Rossilli told him, a comment Justin took with a new
humility.
“Randy gave me a feedback,” Justin told his co-worker, Mr. Manzione, and revised
the drawing until Mr. Rossilli declared it perfect.
But Justin still needed more one-on-one training to become an animator than
Nightstand could provide, and by the summer of 2010, Mr. Rossilli had signaled
that the internship would need to end. The business was faltering, and he needed
to lay off his last two employees.
The Canhas learned too, that the state’s Division of Developmental Disabilities,
where Justin would apply for support after the transition program ended, had
threatened major budget cuts. And in the fall, they were told, Ms. Wallace’s
hours in the transition program would be cut in half.
At home, Briant and Maria Teresa’s voices rose as they discussed Justin’s
future. None of Justin’s artwork had sold that year.
“Maybe ‘Sesame Street’ will come through,” Maria Teresa ventured.
“Let’s just deal with what’s in front of us,” Briant insisted.
“I don’t like the parents discussing in the background,” Justin told a visitor.
“I prefer the apartment.”
The next month, he woke his mother in the night, crying. He had had a nightmare,
about “parents’ death and my death,” he told her.
It was, his mother thought, the first time he had registered what it would mean
to truly be on his own.
A Friend,
at Last
In January 2010, Gower Nibley, another student with autism who had joined the
transition program the previous fall, received a text on his cellphone from
Justin.
“My baloney has a first name, it’s H-O-M-E-R,” it read, the first line of a
“Simpsons” takeoff on an iconic advertising jingle. Gower’s phone soon buzzed
again: “My baloney has a second name,” this text said. “It’s H-O-M-E-R.”
On his way to his internship at a nursing home, Gower, 20, let out a giggle.
The grin that spread across Justin’s face whenever he saw Gower was striking.
And Ms. Stanton-Paule, who was struggling to convince Justin’s parents that this
budding friendship was a priority, hastened to schedule time for the two to eat
lunch together. She created “Plan an Activity” worksheets so that they would not
stand each other up by accident when they intended to get together, as had
already happened more than once.
But with just five months left in the program, a rare fissure had opened between
the teacher and Justin’s parents. Maria Teresa insisted that Justin was spending
too much time on activities that did not involve finding work. “Kate,” Maria
Teresa had told her sharply in a voicemail, “you need to get on top of this!”
Over the summer of 2010, the Canhas had enrolled Justin in a cake-decorating
course; if he could not immediately find employment in animation, a job at a
bakery, they all agreed, would allow him to use his artistic talent. He would
enjoy decorating cakes with cartoon characters, Justin told his teacher,
“because it cheers people up.”
That September, Maria Teresa had peppered Ms. Stanton-Paule with suggestions of
gourmet bakeries where Justin might intern. The voicemail followed when a few
weeks passed and the busy teacher had not yet followed up on all her leads.
But by October, Ms. Stanton-Paule had prevailed on Gencarelli’s Bakery in nearby
Bloomfield to train Justin to dip cookies. And at a tense meeting in January,
she told the Canhas that Justin needed to spend time with fellow students, even
taking time to attend a class she was teaching on relationships and sexuality.
Maria Teresa objected. How could they be sure Gencarelli’s would turn into a
real job? Perhaps he should take an animation class at Montclair State.
Briant, jet-lagged from a trip, closed his eyes.
Ms. Stanton-Paule held her ground. “Justin’s social competence is going to be a
huge gauge of whether he is accepted in the workplace,” she said. Beyond that,
she thought, he simply needed a friend.
Gower, who liked classic Hanna-Barbera cartoons like “Scooby-Doo,” took Justin’s
probing, often repetitive questions about animation with a seriousness that no
one else did. (“Sadly, in 2006, William Barbera passed away,” Justin had
informed his friend.)
“You know, Brooks,” Gower commented to a teaching assistant who was with them at
the supermarket, “I think if there were ever a trivia contest about cartoons,
Justin would win.”
“Thanks,” Justin said, looking sideways at Gower.
But Gower was considered higher-functioning than Justin. His interests included
weather and geography, and he had a girlfriend. Fearing that Gower would tire of
Justin’s single-minded focus, Ms. Stanton-Paule had urged Justin to broaden his
discussion topics. But it was slow going.
At the meeting in January, Ms. Stanton-Paule finally turned to Justin: “Would
you like to continue to make time for getting together with Gower?”
“Yes!” he exclaimed.
Maria Teresa began to cry. Of course she wanted her son to have a friend. It was
just that the responsibility for Justin’s future was suddenly almost unbearable,
she apologized. She wanted so desperately for him to live up to his promise.
“Kate,” she said, “what will we do without you?”
Her husband reached over and put his hand on her arm.
Going It
Alone
One day as Justin dipped cookies in chocolate in the bakery, a baker bumped into
a co-worker carrying a tub of custard.
“Oh, did I hit the bucket?” she exclaimed, her words slurring somewhat in her
alarm.
Justin, thinking she had used profanity to express frustration, rushed over. “It
is not appropriate to curse at work,” he lectured her, proceeding to supply a
lengthy list of alternatives. She might consider “fudge,” for instance, or
“fiddlesticks.”
“You’re right, Justin,” the woman said, though she explained through her
laughter that she had not, in fact, cursed.
The report of the incident, by amused bakery employees, filled Ms. Stanton-Paule
with unexpected joy. Justin had not needed her prompting to interact with his
colleagues. And they had not needed her to decipher his quirks.
Ariel Tuck, 21, Justin’s supervisor, found herself enjoying his spontaneous
off-key singing. Justin was not quite as fast as the other interns, Ms. Tuck
told the bakery’s co-owner, but his work was neater. Justin was filling up
entire racks of cookies now, 14 trays at a time. With each new assignment, she
had learned to ask him to use the notepad Ms. Stanton-Paule had supplied;
drawing the shapes helped him remember which cookies went with which color
sprinkles.
Justin received his first paycheck, for $84, in March, shortly after the
Valentine’s Day rush, where he learned to write with chocolate for the first
time. For now, he would work two days a week, at minimum wage.
“Right now I am dipping cookies,” Justin told people. “Maybe someday I will
decorate cakes.”
That winter his mother made time to arrange a visit for Justin with Paloma
Kalish, a Manhattan teenager and fellow animation buff with a form of
high-functioning autism who was, as Justin put it, “a big fan of me.”
Paloma had followed Justin’s art career on his Web site after meeting him once
at an exhibit, and her mother had sought out Maria Teresa. When the two met at
the Kalishes’ home, Justin drew Paloma’s favorite character, Tod the Fox, in a
composition book she had bought as an homage to him. A few months later, both
mothers drew back as Justin took Paloma’s hand after a visit to his solo
exhibition at the gallery in Chelsea.
“Don’t be curious,” he told his mother when she asked about the pile of fox
pictures he was collecting on his desk at home. “Don’t be interested.”
If there was a hint that something more than friendship could grow — perhaps
with Justin’s adoption of vegetables into his diet, after watching Paloma eat a
salad — their discussion seldom strayed from animation.
But one spring morning with Gower, Justin took a conversational leap. “I hate
moving,” Justin confided on their walk in a local park, recounting the places
and dates of his moves, as he had so often done for himself over the years.
Gower told him that he, too, disliked moving.
The young men lay down in a field and looked up at the sky. Justin told Gower
that he planned on saving money, and that he might get a cat when he moved to
his own apartment.
“Once I move into the apartment I’m going to feel so relieved,” Justin said.
Gower would be welcome to visit whenever he wanted.
Ms. Stanton-Paule visited the bakery once more before the transition program
ended in June, just as Ms. Tuck — whom Justin enjoyed calling “my boss” — was
showing him how to make cookies that looked like rolled-up diplomas and hats.
Another part-time job had come through for him too, stocking shelves at an art
supply store. And this year, at least, he would have a state-financed job coach
a few hours a week and $16,000 in aid for continued training in independent
living skills like banking, shopping and cooking.
His teacher watched him for a while as he worked.
Finally, he turned around.
“What are you still doing here, Kate?” he asked, his trademark bluntness making
her smile.
“I’m just watching, Justin,” she said. “Is it O.K.?”
“Oh, O.K.,” he said.
She stayed for a little longer. Then she slipped away, the glass door closing
behind her.
Jessy, the 8-year-old daughter of Clara Claiborne Park, would
step around a spot of light on the floor for hours, or incessantly run a chain
through her fingers. She would sit and stare through people around her as though
they were not there. A word she learned one day would fade from her memory the
next.
That was more than 40 years ago, when autism was barely understood, much less
recognized, as a standard diagnosis. It was considered schizophrenia, or, to
some professionals who embraced the term “refrigerator mother,” a deep-seated
decision to closet consciousness from an unbearable family situation, including
an emotionally frigid mother.
Mrs. Park, a college English teacher, wanted to tell her daughter’s story, and
the book she wrote, “The Siege,” published in 1967, did that and more. It was
credited with assuaging the guilt that so many parents of autistic children had
assumed, and came to be regarded as an important source of insight for
psychiatrists, psychologists, educators and advocates.
Mrs. Park died on July 3 in Williamstown, Mass. She was 86. The cause was
complications from a fall, her son, Paul, said.
In the first edition of “The Siege,” Jessy was called Elly because Mrs. Park,
hoping that her daughter would someday be able to read, did not want her to be
embarrassed. That concern dissolved, and Elly became Jessy in later editions, as
well as in a sequel, “Exiting Nirvana” (2001), which recounted the agonizing but
steady progress of the girl and her family.
“She was one of the first parents who had the courage to share their story at a
time when autism was poorly understood,” Dr. Fred R. Volkmar, director of the
Yale University Child Study Center, said of Mrs. Park. “Since she first
published her book, wider recognition of autism and early diagnosis have led to
new treatments and improved outcomes.”
Bridget A. Taylor, co-founder and director of the Alpine Learning Group in
Paramus, N.J., a school for autistic children, agreed, saying: “The book really
set the stage for families to search for answers; to no longer accept ‘no’ from
the establishment, to have higher expectations for their children. In many ways
it decreased the isolation that families felt, and for many young professionals
in the field, the book was an invaluable reading assignment to learn what the
experience is like.”
Jessica Park, now 51, can read, is an accomplished artist and has worked in the
mailroom at Williams College, in Williamstown, for 30 years. Her mother was a
lecturer in English studies at Williams from 1975 until 1994.
There is no cure for autism, only palliative treatments of varying
effectiveness. Like many other developmental disorders, autism affects patients
with a range of conditions — from those who function at high levels but have
social and emotional barriers to those who cannot communicate and repetitively
rock or bang their heads.
“My mother knew early on that something wasn’t right,” Paul Park said. “Jessy
didn’t show classic signs of retardation: she was coordinated, there were
certain tasks she performed efficiently. She spoke very hesitantly by the time
she was 8.”
Still, in measured, often poetic assessments, Mrs. Park’s books describe how
Jessy recoiled when touched, screamed in desolation if a washcloth was missing
from the bathroom and performed abstruse mathematical calculations. Mrs. Park
told of the difficulty finding professional care and the turmoil the entire
family faced.
The second edition of “The Siege” says, “I write now what 15 years past I would
still not have thought possible to write: that if today I were given the choice
to accept the experience, with everything that it entails, or to refuse the
bitter largesse, I would have to stretch out my hands — because out of it has
come, for all of us, an unimagined life.”
Born on Aug. 19, 1923, in Tarrytown, N.Y., Clara Justine Claiborne was the
daughter of Virginia and Robert Claiborne. She graduated from Radcliffe in 1944.
A year later, she married David Park, who would become a noted physicist.
They began graduate studies together at the University of Michigan, where Mrs.
Park received a master’s degree in English literature in 1949. Two years later,
they moved to Massachusetts, where she first taught at Berkshire Community
College and later at Williams.
Besides Jessy and her son, Paul, Mrs. Park is survived by her husband; two other
daughters, Katharine Park and Rachel Park; and two grandchildren.
In “Exiting Nirvana,” Mrs. Park quotes a string of spontaneous utterances from
her 15-year-old daughter: “And silence is 8. And between silence and sound is 7.
Sounds and silence at the same time but not between. Only politeness is sound.”
Jessica Park graduated from Mount Greylock High School when she was 21. There,
an art teacher encouraged her to draw. She now sells paintings — not of people,
but mostly of streetscapes that combine precise draftsmanship and wild colors.
At Williams College, where she has been employed since high school, a sign on
the door of her workplace says, Jessica H. Park Mailroom.
IF you ask my daughter, Isabel, what autism means to her, she won’t say that it
is a condition marked by impaired social communication and repetitive behaviors.
She will say that her autism makes her a good artist, helps her to relate to
animals and gives her perfect pitch.
The stigma of autism is fading fast. One reason is that we now understand that
autism is a spectrum with an enormous range. Some people with autism are
nonverbal with profound cognitive disabilities, while others are accomplished
professionals.
Many people with milder symptoms of autism have, for the past 20 years or so,
received a diagnosis of Asperger’s disorder. Some autistic adults call
themselves “Aspies” to celebrate their talents and differences. And many parents
have embraced the label because they have found it less stigmatizing, and so it
has eased their sense of loss.
This may soon change, however. The American Psychiatric Association, with its
release this week of proposed revisions to its authoritative Diagnostic and
Statistical Manual of Mental Disorders, is recommending that Asperger’s be
dropped. If this revision is adopted, the condition will be folded into the
category of “autism spectrum disorder,” which will no longer contain any
categories for distinct subtypes of autism like Asperger’s and “pervasive
developmental disorder not otherwise specified” (a category for children with
some traits of autism but not enough to warrant a diagnosis).
The change is welcome, because careful study of people with Asperger’s has
demonstrated that the diagnosis is misleading and invalid, and there are clear
benefits to understanding autism as one condition that runs along a spectrum.
When the American Psychiatric Association first recognized Asperger’s disorder
in 1994, it was thought to be a subtype of autism. As the diagnosis became more
common, it broadened the public understanding of autism as a spectrum. It helped
previously undiagnosed adults to understand their years of feeling unconnected
to others, but without bestowing what was considered the stigma of autism. And
it helped educators justify providing services for children who, in the past,
might have been unappreciated or even bullied because of their differences, but
received no help from teachers.
It’s no longer a secret that people with autism can have careers and meaningful
social relationships. Witness the spate of recent movies, from HBO’s “Temple
Grandin,” about a woman with autism who became an animal scientist famed for her
designs of humane slaughterhouses, to “Mary and Max,” an animated feature about
a friendship between a 44-year-old man with Asperger’s and an 8-year-old girl.
But a culturally meaningful distinction isn’t always a scientifically valid one.
Almost everyone with Asperger’s also fits the profile of the more classic
autistic disorder. Indeed, in the current diagnostic manual, a child who has
good language acquisition and intelligence qualifies as autistic if, in addition
to having restricted interests and problems with social interactions, he has
just one of the following symptoms, which are common among children with
Asperger’s: difficulty conversing, an inability to engage in make-believe play
or repetitive or unusual use of language. Even the best available diagnostic
instruments cannot clearly distinguish between Asperger’s and autistic disorder.
People who now have a diagnosis of Asperger’s can be just as socially impaired
as those with autism. So Asperger’s should not be a synonym for “high
functioning.” Likewise, people with autism who are described as “low
functioning,” including those without language, can have the kinds of
intelligence and hidden abilities that are associated with Asperger’s — in art,
music and engineering, for example — and can communicate if given assistance.
Moreover, large epidemiological studies have demonstrated that mild symptoms of
autism are common in the general population. In particular, scientists have
found that family members of a child with autism often exhibit isolated autistic
traits. With autism, as with many medical diagnoses — like hypertension and
obesity — the boundary lines are drawn as much by culture as by nature. Dividing
up the workings of the mind is not as neat and orderly as categorizing species.
The proposed new diagnostic criteria, by describing severity and functioning
along a single continuum, would also capture the often unpredictable changes
among children with autism. When Isabel was 3, she had all the symptoms of
autistic disorder, but if she walked into a doctor’s office today as a new
patient — a chatty, quirky high school senior — she would more likely be given a
diagnosis of Asperger’s disorder. Narrow diagnostic categories do not help us
understand the way a person will develop over time.
We no longer need Asperger’s disorder to reduce stigma. And my daughter does not
need the term Asperger’s to bolster her self-esteem. Just last week, she
introduced herself to a new teacher in her high school health class. “My name is
Isabel,” she said, “and my strength is that I have autism.”
Day after day, night after night, Francisco Hernandez Jr. rode the subway. He
had a MetroCard, $10 in his pocket and a book bag on his lap. As the human tide
flowed and ebbed around him, he sat impassively, a gangly 13-year-old boy in
glasses and a red hoodie, speaking to no one.
After getting in trouble in class in Bensonhurst, Brooklyn, and fearing another
scolding at home, he had sought refuge in the subway system. He removed the
battery from his cellphone. “I didn’t want anyone to scream at me,” he said.
All told, Francisco disappeared for 11 days last month — a stretch he spent
entirely in subway stations and on trains, he says, hurtling through four
boroughs. And somehow he went undetected, despite a round-the-clock search by
his panicked parents, relatives and family friends, the police and the Mexican
Consulate.
Since Oct. 26, when a transit police officer found him in a Coney Island subway
station, no one has been able to fully explain how a boy could vanish for so
long in a busy train system dotted with surveillance cameras and fliers bearing
his photograph.
But this was not a typical missing-person search. Francisco has Asperger’s
syndrome, a form of autism that often causes difficulty with social interaction,
and can lead to seemingly eccentric behavior and isolation. His parents are
Mexican immigrants, who say they felt the police were slow to make the case a
priority.
“Maybe because you might not understand how to manage the situation, because you
don’t speak English very well, because of your legal status, they don’t pay you
a lot of attention,” said Francisco’s mother, Marisela García, 38, a
housecleaner who immigrated in 1994 and has struggled to find ways to help her
son.
The police, however, say they took the case seriously from the start,
interviewing school officials and classmates, canvassing neighborhoods and
leafleting all over the city.
Francisco says his odyssey wound through three subway lines: the D, F and No. 1.
He would ride a train until its last stop, then wait for the next one, wherever
it was headed. He says he subsisted on the little he could afford at subway
newsstands: potato chips, croissants, jelly rolls, neatly folding the wrappers
and saving them in the backpack. He drank bottled water. He used the bathroom in
the Stillwell Avenue station in Coney Island.
Otherwise, he says, he slipped into a kind of stupor, sleeping much of the time,
his head on his book bag. “At some point I just stopped feeling anything,” he
recalled.
Though the boy’s recollections are incomplete, and neither the police nor his
family can retrace his movements in detail, the authorities say that he was
clearly missing for 11 days and that they have no evidence he was anywhere but
the subway.
For his parents, the memories of those 11 frantic days — the dubious sightings,
the dashed hopes and no sleep — remain vivid. “It’s the most terrible thing,”
his mother said in Spanish.
Just what propelled Francisco to take flight on Oct. 15 is unclear.
Administrators at his school, Intermediate School 281, would not comment. But
Francisco said he had failed to complete an assignment for an eighth-grade
class, and was scolded for not concentrating.
After school, he phoned his mother to say he was heading home. She told him the
school had called and she wanted a serious talk with him.
His first impulse was to flee. He walked eight blocks to the Bay Parkway station
and boarded a D train. It seemed a safe place to hide, he said.
When he did not arrive home, his mother started to panic. In January, after
another problem at school, Francisco had left home and ridden the subway, but
returned after five hours. “We thought this time it would be the same,” Ms.
García said. “But unfortunately it wasn’t.”
Her husband, also named Francisco Hernandez, went to the nearest subway station
and waited for several hours while she stayed at home on Bay 25th Street with
their 9-year-old daughter, Jessica. After midnight, the couple called the
police, and two officers from the 62nd Precinct visited their apartment.
The next morning, Mr. Hernandez, 32, a construction laborer, borrowed a bicycle
and scoured Bensonhurst. He and his wife separately explored the subway from
Coney Island to Midtown Manhattan.
They had been trying to help their son for years. Born in Brooklyn, Francisco
grew up a normal child in many ways, his mother said, earning mostly passing
grades and enjoying drawing and video games. But he had no friends outside
school, and found it difficult to express emotions. A gentle, polite boy, he
spoke — when he did speak — in a soft monotone.
In 2006, his parents had him evaluated at a developmental disabilities research
clinic on Staten Island, where his Asperger’s was diagnosed. The clinic’s chief
neuropsychologist concluded that Francisco struggled in situations that demanded
a “verbal or social response.”
“His anxiety level can elevate, and he freezes in confusion because he does not
know what to do or say,” the doctor wrote.
After he disappeared, his parents printed more than 2,000 color leaflets with a
photo of Francisco wearing the same red hoodie; friends and relatives helped
post them in shops, on the street and throughout the subway in Brooklyn. The
family hand-lettered fluorescent-colored signs.
“Franky come home,” one pleaded in Spanish. “I’m your mother I beg you I love
you my little boy.”
Francisco said he never saw the signs. He lost sense of time. He was prepared,
he said, to remain in the subway system forever.
No one spoke to him. Asked if he saw any larger meaning in that, he said,
“Nobody really cares about the world and about people.”
Sightings were reported. An image of a boy resembling Francisco had been
captured by a video game store’s security camera, but he turned out to be
someone else, the police said. A stranger called Mr. Hernandez to say he had
spotted Francisco with some boys at a movie theater in Sheepshead Bay, Brooklyn.
A search turned up nothing.
Ms. García said one detective told her the boy was probably hiding out with a
friend. She replied that her son had no friends to hide out with. Frustrated,
the parents sought help from the Mexican Consulate. Officials there contacted
the Spanish-language news media, which ran brief newspaper and television
reports about Francisco, and called the police — “to use the weight that we have
to encourage them, to tell them that we have an emergency,” a consular spokesman
said.
Six days after Francisco’s disappearance, on Oct. 21, the case shifted from the
police precinct to the Missing Persons Squad, and the search intensified. A
police spokeswoman explained that a precinct must complete its preliminary
investigation before the squad takes over.
The squad’s lead investigator on the case, Detective Michael Bonanno, said he
turned the focus to the subway. He and his colleagues blanketed the system with
their own signs, rode trains and briefed station attendants.
About 6 a.m. on Oct. 26, the police said, a transit officer stood on the D train
platform at the Stillwell Avenue station studying a sign with Francisco’s photo.
He turned and spotted a dirty, emaciated boy sitting in a stopped train. “He
asked me if I was Francisco,” the boy recalled. “I said yes.”
Asked later how it felt to hear about the work that had gone into finding him,
Francisco said he was not sure. “Sometimes I don’t know how I feel,” he said. “I
don’t know how I express myself sometimes.”
Apart from leg cramps, he was all right physically, and returned to school a
week later. But Ms. García said she was still trying to learn how to manage her
son’s condition. Though doctors had recommended that Francisco be placed in a
small school for children with learning disorders, she said, officials at his
school told her he was testing fine and did not need to be transferred.
“I tell him: ‘Talk to me. Tell me what you need. If I ever make a mistake, tell
me,’ ” she said. “I don’t know, as a mother, how to get to his heart, to find
out what hurts.”
One of the fluorescent signs hangs on the living room wall. The others are
stacked discreetly in a corner, and Ms. García said she was not ready to discard
them.
“It’s not easy to say it’s over and it won’t happen again,” she said.
THE Diagnostic and Statistical Manual of Mental Disorders, published by the
American Psychiatric Association, is the bible of diagnosis in psychiatry, and
is used not just by doctors around the world but also by health insurers.
Changing any such central document is complicated. It should therefore come as
no surprise that a committee of experts charged with revising the manual has
caused consternation by considering removing Asperger syndrome from the next
edition, scheduled to appear in 2012. The committee argues that the syndrome
should be deleted because there is no clear separation between it and its close
neighbor, autism.
The experts propose that both conditions should be subsumed under the term
“autism spectrum disorder,” with individuals differentiated by levels of
severity. It may be true that there is no hard and fast separation between
Asperger syndrome and classic autism, since they are currently differentiated
only by intelligence and onset of language. Both classic autism and Asperger
syndrome involve difficulties with social interaction and communication,
alongside unusually narrow interests and a strong desire for repetition, but in
Asperger syndrome, the person has good intelligence and language acquisition.
The question of whether Asperger syndrome should be included or excluded is the
latest example of dramatic changes in history of the diagnostic manual. The
first manual, published in 1952, listed 106 “mental disorders.” The second
(1968), listed 182, and famously removed homosexuality as a disorder in a later
printing. The third (1980) listed 265 disorders, taking out “neurosis.” The
revised third version (1987) listed 292 disorders, while the current fourth
version cut the list of disorders back to 283.
This history reminds us that psychiatric diagnoses are not set in stone. They
are “manmade,” and different generations of doctors sit around the committee
table and change how we think about “mental disorders.”
This in turn reminds us to set aside any assumption that the diagnostic manual
is a taxonomic system. Maybe one day it will achieve this scientific value, but
a classification system that can be changed so freely and so frequently can’t be
close to following Plato’s recommendation of “carving nature at its joints.”
Part of the reason the diagnostic manual can move the boundaries and add or
remove “mental disorders” so easily is that it focuses on surface appearances or
behavior (symptoms) and is silent about causes. Symptoms can be arranged into
groups in many ways, and there is no single right way to cluster them.
Psychiatry is not at the stage of other branches of medicine, where a diagnostic
category depends on a known biological mechanism. An example of where this does
occur is Down syndrome, where surface appearances are irrelevant. Instead the
cause — an extra copy of Chromosome 21 — is the sole determinant to obtain a
diagnosis. Psychiatry, in contrast, does not yet have any diagnostic blood tests
with which to reveal a biological mechanism.
So what should we do about Asperger syndrome? Although originally described in
German in 1944, the first article about it in English was published in 1981, and
Asperger syndrome made it only into the fourth version of the manual, in 1994.
That is, the international medical community took 50 years to acknowledge it. In
the last decade thousands of people have been given the diagnosis. Seen through
this historical lens, it seems a very short time frame to be considering
removing Asperger syndrome from the manual.
We also need to be aware of the consequences of removing it. First, what happens
to those people and their families who waited so long for a diagnostic label
that does a good job of describing their profile? Will they have to go back to
the clinics to get their diagnoses changed? The likelihood of causing them
confusion and upset seems high.
Second, science hasn’t had a proper chance to test if there is a biological
difference between Asperger syndrome and classic autism. My colleagues and I
recently published the first candidate gene study of Asperger syndrome, which
identified 14 genes associated with the condition.
We don’t yet know if Asperger syndrome is genetically identical or distinct from
classic autism, but surely it makes scientific sense to wait until these two
subgroups have been thoroughly tested before lumping them together in the
diagnostic manual. I am the first to agree with the concept of an autistic
spectrum, but there may be important differences between subgroups that the
psychiatric association should not blur too hastily.
IN mid-2007, I set off to meet with geneticists, epidemiologists and doctors
who specialize in researching and treating autism. I was seeking a novel therapy
for my 42-year-old autistic younger brother Noah. I was also looking to discover
how heightened awareness of autism — it is now among the most financially
successful and mediagenic diseases ever, with hundreds of millions of dollars a
year going to research, and regular press coverage — might have resulted in new
and innovative programs for adult autistics like Noah.
Autism was already widely being described as an epidemic, affecting as many as 1
in 150 8-year-olds, according to the Centers for Disease Control and Prevention.
We had come a long way since Noah got his diagnosis in the late ’60s, the
so-called dark ages of autism, when many pediatricians believed they had never
seen a case, and so-called refrigerator mothers were mistakenly blamed for their
children’s withdrawn, antisocial condition.
But now, with autism described to me as “the disease of the decade” by Peter
Bell, the executive vice president of programs and services for the advocacy
group Autism Speaks, I thought perhaps there was hope, even for low-functioning
adult autistics like Noah.
Noah has been my family’s focus for decades. As a baby, he had been very slow to
turn over, crawl or walk, and each subsequent developmental milestone was even
more delayed as he grew into adulthood. My parents did everything they could for
him, moving us from New York to Los Angeles in the early 1970s to be closer to a
pioneering autism program at the University of California at Los Angeles,
opening their own day care center for the developmentally disabled, even
creating a one-on-one assisted-living situation for Noah — years before this
became common — so that they could delay institutionalizing him.
I toured those state hospital systems with my parents when we started looking
for a place for a growing-up Noah. Those were terrifying visits: adult patients
wearing helmets and restraints, howling and hitting themselves. This was during
the ’70s when the scandals at state psychiatric hospitals like Letchworth
Village in New York and Camarillo in California were making terrifying
headlines. Clients at Camarillo were dying from neglect and improperly
administered medications. We had to keep Noah out of that system for as long as
we could.
Eventually, when he was 22, Noah had to leave home. He graduated from his
special needs school on a bright, sunny Orange County day; he was beaming,
handsome in his bright blue cap and gown.
But for the profoundly autistic, graduation is perhaps the saddest day in their
lives. For those who cannot enter the work force, continue on to more education
or find some sheltered workshop environment with adequate staffing, there are
few options. Far too few programs and resources are allocated for adults with
autism.
Noah has been in and out of sheltered workshops, but these are always under
threat because of state budget deficits. Noah has been asked to leave some
programs because he was too low-functioning. For several years, we have been
trying to find a day program where he might interact with others and perhaps
perform some simple, menial job. We have long since given up any hope that he
might continue in adulthood the behavioral therapies that are now considered
standard for autistics; unless the family is willing to pay the bulk of the
cost, there is very little out there for men and women like Noah.
For purposes of fund-raising and awareness-raising, autism has been portrayed as
a childhood disease. The federal Department of Health and Human Services has
characterized it as a “disorder of childhood.” There are practical reasons for
this: early intervention has been shown to be the most effective therapy. The
trend in autism treatment has been to steadily lower the age at which intensive
intervention commences — as early as five months, according to some experts. Yet
autism is not a degenerative condition; the vast majority of those 1 in 150
children who are afflicted will survive to adulthood.
As I spoke with the experts, I began to see that the focus on children had
influenced not only the marketing of autism, but also research and treatment. It
seemed the majority were interested in children only, the younger the better.
“The best time to look is at the early ages, when autism is developing,” Sophia
Calimaro, vice president of research at Autism Speaks, told me a few months ago,
explaining that was also where there had been the most treatment success. “I’m
not making excuses, but that’s really why more research into adults with autism
hasn’t been done.”
Low-functioning adult autistics are viewed with sympathy but not much scientific
inquiry. No one has broken down how many dollars are actually flowing to adult
autistics, but at the International Meeting for Autism Research in Seattle in
May 2007, I counted more than 450 papers and presentations and three dozen talks
on autism given by academics and specialists; of those, only two dealt with
low-functioning adults, and neither included a cohort large enough to be
statistically relevant.
The careful measurements of brain function, or dysfunction, were almost all done
on children. A few cognitive and emotional development studies dealt with
adults, but these were overwhelmingly focused on high-functioning autistics and
people with Asperger’s syndrome.
Autism Speaks, the major sponsor of autism research projects, has not broken
down the proportion of funds that go to adult-oriented research, but Mr. Bell,
whose teenage son is autistic, laments that “it’s low, too low. ... We have to
change the paradigm for those of us who have kids who are going to grow up and
need more and better services.”
That change can’t come soon enough. Even with state-of-the-art early
intervention — eight hours a day, seven days a week — many autistics will need
support throughout their lives. The reality is that very few, perhaps only 10
percent, of those as severely autistic as Noah benefit from the current
interventions to the point where they become functioning members of society.
If the current C.D.C. estimation of prevalence is correct, then there will be an
awful lot of adult autistics who need lifetime support and care. Noah’s life has
been a grim study in how scarce those resources are. Without them, his behavior
has regressed.
A recent “psychological and psychopharmacological” report by the California
Department of Developmental Services said Noah exhibited a “failure to develop
peer relationships, a lack of social or emotional reciprocity,” and it described
some of his “maladaptive behaviors” like “banging his head against solid
surfaces, pinching himself and grabbing others.”
“Noah may also,” it noted, “intentionally spit at others, pinch or scratch
others, dig his fingernails into others, and/or pull others’ hair. He may bite,
head-butt and hit others; throw objects at others, and hit/slap his head when he
is highly agitated.” He is a handful.
Now, imagine a few hundred thousand Noahs.
Karl Taro Greenfeld is the author,
most recently, of “Boy Alone: A Brother’s
Memoir.”
