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Illustration: Andrea Ventura


Autism Doesn’t Have an Age Limit


31 May 2009


















Illustration: Vivienne Flesher


Growing Old With Autism


24 May 2009


















Ilustration: Adrian Mangel


A Family Memoir Makes the Case

That Autism Is Different, Not Less


AUG. 16, 2017



















Christopher, who has autism,

talks about attending a Northwest SOIL school

while his mother Sarah Snyder listens,

in Puyallup, Washington.


Photograph: Erika Schultz

The Seattle Times


At Washington State Special Education Schools,

Years of Abuse Complaints and Lack of Academics

by Mike Reicher and Lulu Ramadan, The Seattle Times


Nov. 26, 9 a.m. EST



















Among their many behavioral differences,


Thomas South, right, loves to explore,

while his brother Cameron prefers to stay put.


Photograph: J. Adam Huggins

for The New York Times


More Differences Than Similarities Are Found in Autistic Siblings


JAN. 26, 2015

































podcasts > before 2024





























































































































































































































































































































































































'I'm scared of my own autistic child'

BBC    30 October 2017





'I'm scared of my own autistic child'

Video        BBC News        30 October 2017


Parents struggling to cope with their violent autistic children

are not being properly supported by local authorities,

the National Autistic Society has told us.


BBC's Victoria Derbyshire programme's reporter Noel Phillips

has been to meet families affected.


The Local Government Association says

while "councils are working hard

to make sure children with autism and other special needs

get access to the support they need...

they have been put in an impossible situation

due to increasing demand and historic underfunding".


















Autism rocks:

meet the boys from The Autistix

G    10 August 2015





Autism rocks: meet the boys from The Autistix

Video        Guardian Docs        The Guardian        10 August 2015


Jack, Luke and Saul are The Autistix,

the UK’s premier autistic rock group.


The boys are a tight-knit friendship group,

expressing themselves through rock and roll

in a way that they struggle to off the stage.


Can they impress the crowds

as they go on tour for the first time,

and build up to their biggest gig so far,

Autism’s Got Talent?


















Go Hammerheads! Winning With Autism

NYT    16 April 2015




Go Hammerheads! Winning With Autism

Video        The New York Times        16 April 2015


Children with disabilities

often can’t participate in team sports.


A new documentary called “Swim Team”

chronicles the Jersey Hammerheads,

a swim team for kids with autism.


Produced by: Lara Stolman

Read the story here: http://nyti.ms/1ENcFMi

Watch more videos at: http://nytimes.com/video



















autism / autism spectrum disorder    ASD        UK







shrub-oak-international-school - May 31, 2024










































watch?v=puhlYl9W1Dw - BBC - 30 October 2017




































































autism / austism spectrum disorder    ASD        USA




shrub-oak-school-autism-new-york-education-oversight - May 8, 2024


















therapeutic-schools-northwest-soil-invisible-washington - November 26, 2022


autistic-adults-train-for-cybersecurity-jobs - September 7, 2022





































watch?v=qDXo83OtzgE - NYT - 19 April 2019



















































































































































































































Australia > autism        UK










a boy on the autism spectrum        USA










 on the autism spectrum > be on the spectrum        USA










be diagnosed with autism        USA












Canada > Autism Spectrum Disorder > ASD band        USA










autism awareness        UK










someone with autism spectrum disorder        USA










brain > cerebellum        USA










World Autism Day is on 2 April        UK



















Meet Saffron:

inside the colourful mind of a girl with autism - video

Michael Tait, Ian Anderson and David Mcnulty


Wednesday 14 June 2017    09.58 BST









have autism        USA






have severe autism        USA






patient with autism        USA






boy with autism        UK






boy with autism        USA






girl with autism         UK






children with autism > dental care        USA






be nonverbal        USA






beat autism        USA






autism > diagnosis        UK








people with autism        UK






people with autism        USA






adults with autism        USA






children with autism        USA








autism > wandering        USA






autism on film        UK









autistic        UK / USA


shrub-oak-school-autism-new-york-education-oversight - May 8, 2024





jefferson-parish-deputies-may-have-violated-law-eric-parsa-death - May 30, 2023

























































autistic youth        UK / USA


shrub-oak-school-autism-new-york-education-oversight - May 8, 2024








autistic siblings        USA










the autistic        USA










UK > The National Autistic Society










social impairments        USA










Suzanne Wright (born Werner)    1946-2016        USA


co-founder of Autism Speaks,

a charity that fights for the autistic

and teaches people how to spot

and deal with the disorder











USA > Clara Justine Claiborne Park    1923-2010        UK / USA

autism campaigner and writer


Clara Claiborne Park


was a pioneering

American autism campaigner,

author and teacher,

best known for two books,

The Siege and Exiting Nirvana,

in which she described

raising her daughter Jessica.













Stanley Ira Greenspan,

developer of ‘floor time’ teaching    USA    1941-2010












Corpus of news articles


 Health > Autism




Adam Lanza, Asperger’s

and a Misleading Connection

With Violence


December 18, 2012

2:10 pm

The New York Times



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.

Adam Lanza, Asperger’s and a Misleading Connection With Violence,






Don’t Blame Autism for Newtown


December 17, 2012

The New York Times



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.


Priscilla Gilman

is the author of “The Anti-Romantic Child:

A Memoir of Unexpected Joy.”

Don’t Blame Autism for Newtown,






The Autism Wars


April 7, 2012

The New York Times



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.”


Amy Harmon is a national correspondent

for The New York Times

who has written extensively on autism.

The Autism Wars,
NYT, 7.4.2012,







Link Gene Mutation

to Autism Risk


April 4, 2012

The New York Times



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.

    Scientists Link Gene Mutation to Autism Risk, NYT, 4.4.2012,






I Had Asperger Syndrome.



January 31, 2012
The New York Times


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.”

I Had Asperger Syndrome. Briefly., NYT, 31.1.2012,







History of Over-Diagnosis


January 31, 2012
The New York Times



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.


Paul Steinberg is a psychiatrist.

Asperger’s History of Over-Diagnosis,







in Helping Adults With Autism


September 23, 2011
The New York Times


To the Editor:

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.

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.

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.

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.

New York, Sept. 19, 2011

The writer is director of the Seaver Autism Center for Research and Treatment at Mount Sinai School of Medicine.

    Investing in Helping Adults With Autism, NYT, 23.9.2011,






Autistic and Seeking a Place

in an Adult World


September 17, 2011
The New York Times


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.

    Autistic and Seeking a Place in an Adult World, NYT, 17.9.2011,






Clara Claiborne Park, 86, Dies;

Wrote About Autistic Child


July 12, 2010
The New York Times


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.

Clara Claiborne Park, 86, Dies;
Wrote About Autistic Child, NYT, 12.7.2010,






Op-Ed Contributor

Disorder Out of Chaos


February 10, 2010

The New York Times




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.”


Roy Richard Grinker,

a professor of anthropology

at George Washington University,

is the author of “Unstrange Minds:

Remapping the World of Autism.”

Disorder Out of Chaos, NYT, 10.2.2010,






Scared and Silent, Runaway, 13,

Spent 11 Days in the Subways


November 24, 2009

The New York Times



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.

Scared and Silent, Runaway, 13, Spent 11 Days in the Subways,






Op-Ed Contributor

The Short Life of a Diagnosis


November 10, 2009

The New York Times



Cambridge, England

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.


Simon Baron-Cohen,

the director of the Autism Research Center

at Cambridge University,

is the author of “The Essential Difference.”

The Short Life of a Diagnosis,






Op-Ed Contributor

Growing Old With Autism


May 24, 2009

The New York Times



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.”

Growing Old With Autism,










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