Spring has sprung. Even here in our northern woods, crocuses have given way to
daffodils and tulips, and people are planting gardens. College students will soon be
out for the summer, and high school students will follow a few weeks after.
Here at GRASP, we're getting ready for our annual benefit. In the meantime, we
have several interesting articles to share with you.
• The Autism Wars
• The Upside of Autism
• Autism is addressed at the United Nations
• Bullied Autistic teenager failed by agencies
• A heart shattered by a glimpse into autism
• ‘Shock’ School Trial: Where Is the Evidence that Abuse Helps Treat Autism?
• Anti-Depressants Likely Do More Harm Than Good, Study Suggests
• Autistic Workers: Loyal, Talented… Ignored
Yvona Fast
Support Groups Manager
GRASP
The Global and Regional Asperger Syndrome Partnership, Inc.
info@grasp.org
www.grasp.org
The Autism Wars
By AMY HARMON
New York Times Sunday Review / Published: April 7, 2012
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.
http://www.nytimes.com/2012/04/08/sunday-review/the-autism-wars.htm...
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Autism is addressed at the United Nations
Robin Hausman Morris
Autism & Parenting Examiner , April 4, 2012
It was an auspicious event yesterday at the United Nations. Autism was the operative
word. Honoring the occasion of the fifth annual World Autism Awareness Day, a panel
discussion was hosted by The Permanent Mission of Bangladesh to the U.N., the United
States Mission to the U.N., the Permanent Mission of the State of Qatar to the U.N. and
Autism Speaks. The occasion was promisingly titled World Autism Awareness Day:
Delivering Answers through Inclusive International Collaboration.
Sitting in delegate chairs equipped with microphones and listening devices, parents,
educators and professionals from around the world took a seat at the proverbial table, all
with one common goal; a global initiative to address autism spectrum disorders.
Powerful opening remarks were led by: H.E. Mr. A. K. Abdul Momen, PhD.,Permanent
Representative of Bangladesh to the U.N., H.E. Mr. Ban Ki-moon, United Nations
Secretary-General, H.E. Mr. Nassir Abdulaziz Al-Nasser, and President of the 66th
Session of the U.N. General Assembly. From Qadar, H.E. Sheikh Meshal Hamad M.J. AlThani,
Permanent Representative of the State of Qatar to the U.N. and Mrs. Suzanne
Wright and Mr. Bob Wright, Co-founders of Autism Speaks.
The overall sentiment was a chilling mantra that referred to the stigma, isolation and
global epidemic of autism. Suzanne Wright’s tearful plea for immediate action was heard
around the world.
Susan Rice, United States Ambassador to the United Nations, stressed the need for a
world “free of discrimination”. She spoke of President Obama who has signed legislation
renewing the landmark Combating Autism Act for another three years, assuring
continued federal support for critical autism research, services and treatment.
The panel discussion moderated by Christiane Amanpour, Global Affairs Anchor – ABC
News Host, “Amanpour” – CNN International. Each panelist brought a unique
perspective to the table; however the staggering numbers of diagnosed cases of autism,
coupled with the crippling costs of raising a child with autism were a common thread.
The Panelists included:
Ms. Geraldine Dawson, Ph. D., Chief Science Officer, Autism Speaks who urged that this
is a “major health crisis” and the need to “change the future worldwide”. She quoted a
Kenyan Proverb: Sticks in a bundle are unbreakable.
Mr. Shekhar Saxena, M. D., Director, Mental Health and Substance Abuse, World Health
Organization, stressed the notion of hope and the power of family intervention. Although
there is no cure, there is treatment and “don’t give up.”
Ms. Saima Wazed Hossain, Chair of the National Advisory Committee on Autism in
Bangladesh has been tireless in her efforts to help individuals with autism. She stressed
the need for coordinated services from the primary to tertiary level.
Ms. Toni Braxton, six-time Grammy Award-winning singer-songwriter, Parent Advocate
spoke from the heart. She introduced her son Diezel with great pride and passion. Ms.
Braxton hailed Suzanne Wright who supported her when she was in despair. She urged
families to remember that they are “not alone”.
Mr. Michael John Carley, Executive Director of both the Global and Regional Asperger
Syndrome Partnership, Inc. (GRASP), and the Asperger Syndrome Training, spoke with
articulate clarity. He referred to his own diagnosis of Aspergers as well as his son’s. Mr.
Carley reminded his audience that there is a significant amount of negativity that
surrounds the autism diagnosis. He fears that words like “fight”, “combat”, and “defeat”
are adverse connotations and for those individuals who can understand, it hardly makes
them feel valued.
Voices from the audience were heard in reminiscent declarations. A mother from
Cleveland spoke with a painful cry of fear for her 14 year old son. “What happens when I
am not here anymore”? The large screens focused on the face of a mother from Korea, as
she lamented the lack of services in her country. “Should I move to the United States?”
An eerie silence filled the room. One panelist suggested that there are web based tutorials
where parent delivered interventions could be put in place.
Guests were invited to a reception Permanent Mission of Bangladesh to the United
Nations. It was an informal gathering of like minds with a common goal.
It is a global emergency. Autism must be addressed here and now.
Continue reading on Examiner.com Autism is addressed at the United Nations - National
Autism & Parenting | Examiner.com http://www.examiner.com/autism-parenting-innational/
autism-is-addressed-at-the-united-nations#ixzz1rA086n2P
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The Upside of Autism
New data show autistics' superiority at some cognitive tasks
One in every 88 U.S. children has been diagnosed with an autism-like disorder, a
government report says, up sharply since figures were last published in 2009, but the
reasons for the increase largely remain a puzzle to public-health officials. Shirley Wang
has details on The News Hub.
When it comes to disorders of the mind, our society has a tendency to seek out the safety
of clear-cut categories. We want there to be a bright line separating normal from
abnormal, health from sickness.
Alas, the human brain is a category buster, an organ so complicated that it continues to
surprise and confound.
Consider autism. In recent years, autism has received an increasing amount of attention,
largely because of a dramatic increase in its incidence. According to a new report from
the Centers for Disease Control, about 1 in 88 children is now diagnosed with autismspectrum
disorders, which include "classic" autism as well as Asperger syndrome.
These diagnoses are often based on observed deficits in social interaction, such as a lack
of eye contact or verbal conversation. Temple Grandin, a noted autistic doctor, describes
the experience of spending time with nonautistics as akin to being "an anthropologist on
Mars."
Because of these obvious shortcomings—humans are supposed to be social animals, after
all—most people regard autism as a disease, a straightforward example of an impaired
mind. But there's compelling evidence that autism is not merely a list of deficits. Rather,
it represents an alternate way of making sense of the world, a cognitive difference that, in
many instances, comes with unexpected benefits.
That's the lesson, at least, of a new study from the lab of Nilli Lavie at University College
London. A few dozen adults, both with and without autism, were given a difficult
perceptual task, in which they had to keep track of letters quickly flashed on a computer
screen. At the same time, they also had to watch out for a small gray shape that
occasionally appeared on the edge of the monitor.
When only a few letters appeared on the screen, both autistic and normal subjects could
handle the task. However, when the number of letters was increased, subjects without
autism—so-called neurotypicals—could no longer keep up. They were overwhelmed by
the surplus of information.
Those adults with autism didn't have this problem. Even when the task became
maddeningly difficult, their performance never flagged.
What explains this result? According to the scientists, autism confers a perceptual edge,
allowing people with the disorder to process more information in a short amount of time.
While scientists have long assumed that autistics are more vulnerable to distraction—an
errant sound or conversation can steal their attention—that's not the case. As Prof. Lavie
notes, "Our research suggests autism does not involve a distractibility deficit but rather an
information-processing advantage."
These perceptual perks have real-world benefits. The scientists argue, for instance, that
the ability to process vast amounts of data helps to explain the prevalence of savant-like
talents among autistic subjects. Some savants perform difficult mathematical calculations
in their head, others draw exquisitely detailed pictures at a young age. These skills have
long remained a mystery, but they appear to be rooted in a distinct cognitive style shared
by all autistics. Because they can process details that elude the rest of us, they can
perform tasks that seem impossible, at least for the normal mind.
The same logic applies to many supposed mental disabilities. In recent years, scientists
have demonstrated that people with attention-deficit disorders typically demonstrate
higher levels of creative achievement in the real world, such as publishing fiction or
winning prizes at science fairs.
Those with dyslexia, meanwhile, are often better at peripheral perception and quickly
grasping the gist of a scene, showing superior performance on a variety of visual tasks.
This might explain the high number of artists and designers with the condition.
The larger lesson is that, according to the latest research, these "deficits" are actually
trade-offs. What seems, at first glance, like a straightforward liability turns out to be a
complex mixture of blessings and burdens.
For too long, we've assumed that there is a single template for human nature, which is
why we diagnose most deviations as disorders. But the reality is that there are many
different kinds of minds. And that's a very good thing.
A version of this article appeared Mar. 31, 2012, on page C12 in some U.S. editions of
The Wall Street Journal, with the headline: No Headline Available.
http://online.wsj.com/article/SB10001424052702303816504577307491933...
mod=WSJ_article_comments#articleTabs%3Darticle
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Bullied autistic teenager failed by
agencies
Published on Friday 20 April 2012 11:05
Gross failures in the care given to a bullied autistic teenager from Stowmarket who died
when he threw himself in front of a train amounted to negligence, a coroner said
yesterday.
Gareth Oates died instantly a month after his 18th birthday when he was hit by a train
after travelling to Marsden Station, near Huddersfield, West Yorkshire.
A three-day inquest in Bradford heard how he was bullied while he studied at West
Suffolk College, in Bury St Edmunds, with some students routinely calling him ‘suicide
boy’.
Bradford Coroner Paul Marks heard how Gareth’s mother, Glenys Oates, mounted a
desperate battle to get appropriate mental health intervention for her son in the run up to
his death on March 2, 2010.
He had already tried to kill himself once and had talked of suicide from the age of 11.
Yesterday, Professor Marks said Gareth was failed by a number of agencies including
those dealing with mental health, social services and education.
He said it was probable that treatment with certain drugs or the appropriate use of the
powers under the Mental Health Act would have ‘averted his death’.
The coroner said there was a clear gap in provision in psychiatric care for young people
between 16 and 18 years old who were too old for child services but too young to benefit
from adult interventions.
He said this was probably a national problem and he said he would be writing to the
Secretary of State for Health and the Royal College of Psychiatrists about his concerns.
In a narrative verdict, Prof Marks said there were gross failures in the assessment and
management of Gareth’s case as well as the access he was given to specialist services
‘amounting to negligence’.
Earlier, the coroner said: “There was a lamentable lack of a named expert in autism to
take overall charge of his care and adopt an holistic approach to his needs.”
The inquest heard that Gareth was diagnosed with high functioning Autistic Spectrum
Disorder when he was five and had specialist help throughout his pre-16 schooling, often
on a one-to-one basis.
Earlier this week, Mrs Oates told the inquest how Gareth had been bullied at secondary
school but this was dealt with.
Things got worse when he started at college, partly because he travelled independently
and was targeted by youths on the train and in other public places.
Administrator Mrs Oates said she had later received an apology from Suffolk Police for
not dealing with this more robustly.
She said her son found the transition to college from school difficult for a range of
reasons.
Although the college put a number of measures in place to help, she believed it was not
enough.
In the summer of 2009 the taunting caused Gareth to run out of college into a wood and
phone his mother her saying: ‘Mum, I’m going to kill myself’.
His mother explained to the coroner how a month after this she found a message on her
phone from her son saying he was on top of cliffs at Sheringham, Norfolk, preparing to
jump.
She said the message said: ‘This is the last time you’ll hear my voice.’
Mrs Oates described how she became more and more concerned about her son’s suicidal
tendencies over the summer of 2009 but could not convince mental health services of the
seriousness of his situation.
She told the inquest: “Nobody seemed to get their act together after he’d attempted
suicide in July 2009.”
She added: “Until I started to kick up a fuss, nobody did anything.”
Gareth eventually started a course of cognitive behavioural therapy in September 2009.
His mother described how he became obsessed with the 1985 action film The Runaway
Train - which ends with one of the main characters killing himself in front of the
locomotive.
Mrs Oates said she believed some of the details of her son’s death mirrored that in the
film.
She told the coroner she believed her son travelled to the Huddersfield area because he
had once been obsessed with a DVD about the last days of steam engines in the Pennines,
which featured the spot where he died.
In his narrative verdict, Prof Marks said: “On many occasions throughout his life he
(Gareth) expressed suicidal ideation.
“His transition between secondary school and college education was difficult for him and
this was compounded by bullying.
“He had contact with many agencies and there was a global failure in his assessment,
management and access to specialist services, amounting to neglect.”
The coroner said he accepted evidence that cognitive behavioural therapy was not enough
in Gareth’s case and ‘pharmacological treatment should have been tried’.
Prof Marks said: “Apart from health and psychiatric services, Gareth was involved with a
variety of other agencies such as social services and the educational authority, to name
but two.
“I have accepted expert evidence that he was failed globally by these agencies.”
He said: “Although no one individual’s failing can be identified, the summation of
failings in his psychiatric management amounted to gross failure in the care delivered to
him.”
The coroner added: “I have accepted expert evidence that there were gaps in service
provision and that treatment with drugs or detention under the provisions of the Mental
Health Act 1983 would, on the balance of probabilities,
have averted his death on March 2, 2010.”
The coroner said he believed the 2010 Autism Bill, which he said came into force just
after the tragedy, would address some of the issues raised by this case and ‘help to
prevent similar tragedies’.
But he said he would be writing to Suffolk County Council to ensure the legislation has
been implemented locally.
After the hearing, Mrs Oates thanked the coroner and said she hoped his
recommendations would be acted on by all the agencies concerned.
She said: “I hope that the lack of appropriate services for young people with autism such
as Gareth will soon be a thing of the past.
“I continue to be deeply saddened by Gareth’s death, as do the rest of his family.
“We hope that other young people with autism will be better protected in the future.”
In a statement, West Suffolk College said: “West Suffolk College takes all reports of
bullying very seriously and we take action to address them when they are reported.
“College staff had no knowledge of Gareth being called ‘suicide boy’ (as has been
quoted) by other students or evidence of bullying while attending college.
“The college carried out a thorough investigation at the time of Gareth’s tragic death in
2010.
“Gareth was supported by teaching staff and our student welfare team during his time
here. He appeared to be coping well with his course.
“We are very sorry for Mrs Oates’ loss.
“Everyone at the college who knew Gareth was very upset, and we offered support to
staff and fellow students at the time.”
Mel Carr, transitions co-ordinator for The National Autistic Society, said: “The tragic
case of Gareth Oates underlines the very real difficulties facing young people with autism
as they make the transition into adulthood and the very real need for support at that time.
“Young people with autism are two to three times more likely to be bullied than their
peers and the impact is devastating. If the right support is available then these problems
need not escalate.
“Gareth was let down by a system that failed to recognise his needs.
“This must not happen again and all agencies must do more to help young people with
autism who find themselves in such troubling circumstances.”
Aidan Thomas, Chief Executive of Norfolk and Suffolk NHS Foundation, said: “On
behalf of the former Suffolk Mental Health Partnership Trust I would like to express our
condolences to the family of Gareth Oates at this distressing time.
“Now the verdict has been given and recommendations have been made we note that the
coroner identifies a failure in the system.
“As such, we are interested in seeing the section 43 letters that will be sent to partner
agencies in order to identify where our Trust can help them achieve their action plans.
“The Trust is already making improvements and has this week been awarded the Suffolk
Wellbeing Service contract, which will support our existing clinical services in Suffolk
for everyone aged 13 upwards.
“Last week also saw the launch of a new pilot youth service in the Trust offering support,
early detection and reaching out to marginalised groups of young people with complex
mental health needs - also helping the bridge the gap between our existing child and adult
services.
“The Trust is also one of a number of agencies in Suffolk taking part in a county wode
autism strategy looking at particular issues for people with autism.
“I appreciate these improvements are being made too late for Gareth but we are
determined to learn from what happened and with our partners will make real changes.”
http://www.buryfreepress.co.uk/news/latest-news/bullied-autistic-te...
1-3752252
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A heart shattered by a glimpse into
autism
By Rob Gorski, Special to CNN
updated 7:49 AM EDT, Mon April 16, 2012
Editor's note: Rob Gorski writes for "Lost and Tired," where he blogs about the reality
of raising three boys on the autism spectrum. He and his wife, Lizze, have three boys,
Gavin,12, Elliott, 6, and Emmett John, 3.
Canton, Ohio (CNN) -- As the snow started falling, I drove to Giant Eagle to pick up
some groceries. With a storm on the way, I needed to stock up on supplies in case we got
snowed in.
I pulled into the parking lot of the store and found a spot right in front of the entrance. I
sat there for a few minutes, collecting what I needed to take in.
As I reached over to the passenger seat to grab my wallet, I glanced over at the car next to
me through the passenger window and saw three people who were loading their groceries
into their car. I also saw a large man standing there, reaching over the hood of their car.
He was wiping the snow and ice off the car's windshield with his bare hands.
The owner of the vehicle looked at him with an icy stare that seemed to say, "How dare
you touch my car."
She seemed disgusted just breathing the same air as the man cleaning her windshield.
Instead of asking him to stop or giving him a few dollars, she quickly climbed into her
car and gunned the car forward so fast the man was knocked back.
A few seconds later, the man got up, walked to my car and knocked on my window. I
hadn't even processed what I had just witnessed. Now he was coming over to me and I
had no idea what to say.
"Please, not now, I just want to get what I need and get home," I thought to myself.
Where I live, it's common for people to approach you for money. I took a deep breath and
started to open the door. The man opened it the rest of the way, being careful not to hit
the car next to me.
This man stood well over 6 feet and wore sweatpants, a light flannel shirt and boots that
were left untied. It was roughly 20 degrees outside and he was clearly not dressed for the
cold.
In a rather abrupt voice, he broke the silence by asking, "Can I have your change?"
I scooped up the change I had in the car and gave him everything I had, which was only
$2.37. After handing him the money, I explained that I didn't have any more.
Autism rates increasing, but why?
CDC: 1 in 88 American kids has autism
CDC: 1 in 88 kids has autism
Study says 1 in 88 kids autistic
"I'm cold and hungry. Can you take me to the shelter?" he asked.
I noticed his hands. They were at his side but his fingers moved silently up and down, as
though he was playing an invisible piano.
He spoke with great difficulty -- in a stilted, mechanical fashion and his face showed no
emotion.
I never felt threatened, although he stood in my personal space about 1 or 2 feet in front
of me. He would occasionally look in my direction, but never at me. Although he stood
so close, he avoided eye contact.
"Can you drive me to the shelter? Because it's warm there and they have food," he asked
me again.
"I'm homeless and very hungry," he said. "I'm not lying to you. If I lie to you then you
might not help me."
I really didn't know what to say, because I wasn't comfortable driving him anywhere.
Then he asked me to buy him some food and gloves. I thought about what to say. I knew
he would have a hard time understanding: I don't have any money. My family is
struggling to survive each day. I was trying to figure out how to explain to him that I
couldn't help, but I was at a loss for words.
Then something happened that shook me to the core and completely broke my heart. As I
was trying to tell him no, he looked me in the eyes. All of a sudden, I was looking at my
oldest son.
My wife and I have three boys with autism; the oldest is 12. Looking at the bare-handed
man was like looking through some special window at my oldest son, 20 or 30 years from
now.
It was like being run over by a freight train. I was washed by a wave of clarity and my
eyes and heart were now open to what was happening in front of me. Suddenly I was
transformed from a person trying to avoid the whole situation into a parent, filled with
compassion and understanding. He again asked me to buy him food because he was
hungry and gloves because his hands were cold.
Something about him was so familiar.
Yes, I would buy him some food. I would never deny any of my children food if they
were hungry. He smiled in my direction and took my hand without looking at me and led
me into the store. His hands were cold, hardened and chapped.
I noticed the looks people gave me as I walked with the bare-handed man into the grocery
store. His clothes were old, beaten up and had a foul odor.
He asked me to buy him a gift card so he could buy food later, when he would be hungry
again. So we walked over to the rack and he picked out a Giant Eagle gift card. I put $25
on the gift card. I gave him $25 in cash and asked him to please buy some gloves and a
bus ride to the shelter. He asked for the receipt so "When the police stop me, I can prove I
didn't steal this."
He told me again that he wasn't lying. I told him I knew he wasn't.
U.S. kids and autism
Overall: 1 in 88 U.S. kids have autism; up 78% from 2002
Total: Estimated 1,000,000 children with autism
Boys: 1 in 54; up 82% from 2002
Girls: 1 in 252; up 63% from 2002
Non-Hispanic white children: 1 in 83; up 70% from 2002
Non-Hispanic black children: 1 in 98; up 91% from 2002
Hispanic children: 1 in 127; up 110% from 2002
Symptoms typically apparent before age 3
Source: Centers for Disease Control and Prevention
He turned to walk away, stopped and looked in my direction as if to say "Thank you," but
didn't. What he did said more than a simple thank you. He showed me his eyes again for
a brief moment before he turned around and left.
I was beside myself with grief. How could someone I didn't know have such a profound
effect on me? It took everything I had not to burst into tears.
I just couldn't shake just how much the bare-handed man reminded me of my oldest son.
Their eyes, mannerisms and even the way they speak were so similar. My son struggles
with boundaries and personal space simply because he doesn't understand, not because he
wants to be invasive.
All I could think was, "How does this happen?" I was smacked in the face with reality.
Related story: Parents of autistic children who "take nothing for granted"
Someday I won't be here to take care of my children. What if this happens to them? What
if they are the ones wiping off a windshield with their bare hands and almost being run
over by someone who doesn't care?
I can't let that happen. I won't let that happen.
Since that cold February day in 2011, I have met the bare-handed man on a few more
occasions. Along the way, I learned that his name is Tim and that he remembers me. Tim
has shown me just how much work still needs to be done.
I would like to think that my experience that day -- the way people treated Tim in that
frozen parking lot -- was an isolated incident. Sadly, I know it's not. Things like this
happen all the time. To this writer and father of three beautiful boys on the autism
spectrum, this is simply unacceptable.
We need to do what we can to help the world better understand both children and adults
with autism. I'm terrified of what the future might hold for my children. I have witnessed
how cruel and unforgiving the world can be to people who are perceived as different. It is
an ugly reality but one I'm working to help change.
Please help spread autism awareness, even if it's one person at a time.
Remember that the autistic children of today will be the autistic adults of tomorrow.
These people need and deserve our compassion, understanding and respect. Let's help to
ensure that what happened to my friend Tim in the parking lot of the Giant Eagle doesn't
have to happen to anyone else, ever again.
The opinions expressed in this commentary are solely those of Rob Gorski.
http://www.cnn.com/2012/04/16/health/autism-homeless-man/index.html
**********************************************************************
‘Shock’ School Trial: Where Is the
Evidence that Abuse Helps Treat Autism?
By Maia Szalavitz | @maiasz | April 23, 2012
The video is brutal: a young man, pinned face down in four-point restraints, receiving 31
electric shocks over the course of several hours that convulse his body with pain. But this
is not Guantánamo or Syria. The electric shocks were delivered in Massachusetts, at the
Judge Rotenberg Center (JRC) for autistic, emotionally disturbed and developmentally
disabled youth. JRC is currently the only place in the U.S. that is legally permitted to
provide this so-called aversive therapy.
Although the Rotenberg Center fought for years to suppress the video, it recently became
public as part of a lawsuit filed against the center by the parents of the victim, 18-yearold
Andre McCollins. Closing arguments in the case are expected on Monday.
If the plaintiffs’ attorneys did their job, a large settlement against JRC should be
forthcoming: res ipsa loquitur (the thing speaks for itself) would seem obviously to be
the relevant principle here. But, unfortunately, unless the judgment is big enough to
bankrupt the program and shut it down for good, the torture of troubled teens will
continue, as it did after other similar cases were settled.
But while the video is horrifying, I find other facts about JRC to be even more disturbing.
Together, these facts make an airtight case for shuttering the program, which is opposed
by all of the major autism and disability rights organizations and has been called torture
by the United Nations special rapporteur on torture.
The first problem is that JRC has been allowed to conduct its skin shock “therapy” for
more than four decades, with little more than anecdotes to support its effectiveness.
The center claims that using skin shocks, which are comparable in pain intensity to a bee
sting, can help control severe self-injurious behavior like head-banging and cutting,
without use of medication. (A reporter who tried the device, however, compared the
feeling to “a horde of wasps attacking me all at once.”) On its website, JRC also argues
that its punitive approach is twice as effective as using rewards to change behavior, even
for the most severe cases.
But over the 40-odd years that it has been operating, JRC has never published a single
randomized controlled trial demonstrating the superiority — or even lack of inferiority —
of its methods, compared with standard therapy, in a peer-reviewed journal. The research
it has published in the scientific literature has all involved case studies: basically stories
of less than a dozen patients in each paper who were not randomly selected and whose
outcomes were not compared to those of similar patients receiving less torturous
treatments.
The FDA would not approve any drug with this sparse a scientific record, let alone one
that caused pain as its intended effect. Unfortunately, however, talk and behavioral
therapies aren’t regulated and don’t have to meet any scientific standards before they are
marketed, even if they are clearly risky.
Of course, many parents of children at JRC have become strong advocates for the
program. They believe that the JRC’s approach — barbarous as it may look from the
outside — is the only thing that has helped their children avoid self-injury and participate
in school. They tell compelling stories about children who had been so dangerous to
themselves that they’d caused brain damage, now being able to sit at a computer and
learn.
I’d be much more convinced by these claims, however, if I hadn’t already heard similar
stories told by dozens of parents of children in other abusive treatments and subjected to
quack remedies — ones that are known to be either ineffective or outright harmful or
both. The reason the FDA’s approval rules for drugs and other therapies it regulates exist
at all is because such extraordinary anecdotal evidence can make useless or dangerous
treatments appear to work miracles.
I’d also be less skeptical if JRC admitted only children with the most severe self-injurious
behavior, rather than advertising the program broadly as a solution for any teen who is
simply “failing in school or refusing to attend or stuck in psychiatric or correctional
setting.”
However, I admit that even if JRC limited admissions and had 10 published peerreviewed
randomized controlled trials proving the superiority of its techniques to drugs
and positive behavioral treatments, I’d still be loath to recommend it. The most
insurmountable problem with JRC involves the corrupting influence of power —
especially when that power is wielded in the context of infliction of pain as “helping.”
Virtually all situations in which vulnerable people are under the complete power of others
— such as that which exists at JRC — are prone to cultivate abuse: we hear again and
again about abuses in nursing homes, prisons, homes for the disabled and teen treatment
centers. As Lord Acton once said, absolute power corrupts absolutely.
(MORE: Why So Much Abuse Is Allowed to Continue in Residential Care)
The principle was first made vivid by psychologist Phil Zimbardo in the notorious
Stanford Prison experiment. Within days, healthy people who had been assigned to play
the role of prison guards began abusing those who were assigned to be prisoners.
Basically, ordinary people placed in positions of authority without checks or balances
will tend to drift towards abusive practices. And they will also tend to “just follow
orders” even when those orders involve escalating abuse, as another famous social
psychology experiment once showed. At Harvard, researcher Stanley Milgram got dozens
of normal people to administer a series of increasingly painful shocks to another human
being (actually an actor making pained noises in another room), simply by having a man
in an authoritative white coat encourage them to continue. The shockers escalated the
pain even though they were told that the shocks could be potentially deadly.
A 2007 incident at JRC illustrates the issue perfectly. A former resident placed a prank
phone call in the middle of the night to one of the program’s sites, pretending to be a
supervisor. He ordered the staff member who answered to phone to rouse two teens from
their beds and deliver dozens of shocks to them, claiming that they’d misbehaved earlier.
For three hours, six staff restrained and shocked the innocent victims — even though the
shocks weren’t in the treatment plan, even though they’d never talked to the so-called
supervisor before and even though the other residents protested vigorously that no bad
behavior had occurred.
When you train people to believe that painful punishments are an acceptable way to
control the behavior of others, it’s hard to prevent this kind of harm. Despicable behavior
comes to seem acceptable, not worth questioning.
This is especially the case when — as has also happened at JRC — when your staff is not
as qualified as it should be. The less educated the staff is about effects like those seen in
Zimbardo’s and Milgram’s research, the more likely they are to accidentally replicate it.
Indeed, there are now at least a half-dozen documented cases of programs that use
aversive treatments becoming actual cults, in which the program director has gained so
much power over the participants and their parents that he can even command bizarre
behavior among them, like kidnapping and partner-swapping.
I covered one particularly stunning instance of this in my book Help At Any Cost: How
The Troubled-Teen Industry Cons Parents and Hurts Kids. In that case, the director of the
KIDS program in New Jersey ordered teens to beat each other, restrain people for hours
without bathroom access and had parents and teens kidnap people over 18 who were
legally allowed to leave if they fled. He even continued to run program meetings
underground after it lost its license. This man wasn’t outside the mainstream either: he
had previously directed the anti-drug program that First Lady Nancy Reagan had called
her “favorite.”
Rotenberg’s founder and long-time head, Matthew Israel, was forced to step down last
year after facing criminal charges for trying to destroy video evidence of the 2007
incident. Perhaps without his leadership, the center will wither naturally, or perhaps a
combination of legal settlements and public outrage will finally end this sad story.
What I hope will bring an end to Rotenberg, however, is simple human compassion and
the public’s demand that extraordinary claims should require extraordinary evidence —
especially when the claims advocate using physical pain to control our most vulnerable
children.
Maia Szalavitz is a health writer for TIME.com. Find her on Twitter at @maiasz. You
can also continue the discussion on TIME Healthland‘s Facebook page and on Twitter at
@TIMEHealthland.
Read more: http://healthland.time.com/2012/04/23/shock-school-trial-where-is-the-
evidence-that-abuse-helps-treat-autism/
****************************************************************
Anti-Depressants Likely Do More Harm
Than Good, Study Suggests
ScienceDaily (Apr. 24, 2012) — Commonly prescribed anti-depressants appear to be
doing patients more harm than good, say researchers who have published a paper
examining the impact of the medications on the entire body.
"We need to be much more cautious about the widespread use of these drugs," says Paul
Andrews, an evolutionary biologist at McMaster University and lead author of the article,
published recently in the online journal Frontiers in Psychology.
"It's important because millions of people are prescribed anti-depressants each year, and
the conventional wisdom about these drugs is that they're safe and effective."
Andrews and his colleagues examined previous patient studies into the effects of antidepressants
and determined that the benefits of most anti-depressants, even taken at their
best, compare poorly to the risks, which include premature death in elderly patients.
Anti-depressants are designed to relieve the symptoms of depression by increasing the
levels of serotonin in the brain, where it regulates mood. The vast majority of serotonin
that the body produces, though, is used for other purposes, including digestion, forming
blood clots at wound sites, reproduction and development.
What the researchers found is that anti-depressants have negative health effects on all
processes normally regulated by serotonin.
The findings include these elevated risks:
• developmental problems in infants
• problems with sexual stimulation and function and sperm development in adults
• digestive problems such as diarrhea, constipation, indigestion and bloating
• abnormal bleeding and stroke in the elderly
The authors reviewed three recent studies showing that elderly anti-depressant users are
more likely to die than non-users, even after taking other important variables into
account. The higher death rates indicate that the overall effect of these drugs on the body
is more harmful than beneficial.
"Serotonin is an ancient chemical. It's intimately regulating many different processes, and
when you interfere with these things you can expect, from an evolutionary perspective,
that it's going to cause some harm," Andrews says.
Millions of people are prescribed anti-depressants every year, and while the conclusions
may seem surprising, Andrews says much of the evidence has long been apparent and
available.
"The thing that's been missing in the debates about anti-depressants is an overall
assessment of all these negative effects relative to their potential beneficial effects," he
says. "Most of this evidence has been out there for years and nobody has been looking at
this basic issue."
In previous research, Andrews and his colleagues had questioned the effectiveness of
anti-depressants even for their prescribed function, finding that patients were more likely
to suffer relapse after going off their medications as their brains worked to re-establish
equilibrium.
With even the intended function of anti-depressants in question, Andrews says it is
important to look critically at their continuing use.
"It could change the way we think about such major pharmaceutical drugs," he says.
"You've got a minimal benefit, a laundry list of negative effects -- some small, some rare
and some not so rare. The issue is: does the list of negative effects outweigh the minimal
benefit?"
Story Source:
The above story is reprinted from materials provided by McMaster University, via
Newswise.
Note: Materials may be edited for content and length. For further information, please
contact the source cited above.
Journal Reference:
1. Paul W. Andrews, J. Anderson Thomson, Ananda Amstadter, Michael C. Neale.
Primum Non Nocere: An Evolutionary Analysis of Whether Antidepressants Do
More Harm than Good. Frontiers in Psychology, 2012; 3 DOI:
10.3389/fpsyg.2012.00117
Need to cite this story in your essay, paper, or report? Use one of the following formats:
APA
MLA
McMaster University (2012, April 24). Anti-depressants likely do more harm than good,
study suggests. ScienceDaily. Retrieved April 26, 2012, from
http://www.sciencedaily.com
/releases/2012/04/120424120450.htm#.T5gBBCcaXow.email
Note: If no author is given, the source is cited instead.
Disclaimer: This article is not intended to provide medical advice, diagnosis or
treatment. Views expressed here do not necessarily reflect those of ScienceDaily or its
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****************************************************************
Autistic workers: loyal,
talented... ignored
Employers could recruit a whole army of unique workers. But ignorance
and fear get in the way. Lynne Wallis looks at why autism is so
misunderstood and what sufferers can offer
Lynne Wallis
Friday 6 April 2012 17.57 EDT
Penny Andrews has a chequered CV for a 31-year-old. She struggled in her
first job as an editorial assistant, which ended in redundancy. Her next
employer disciplined her for publicly discussing colleagues' pay rises,
while another let her go for lacking initiative. Others insisted she had
no common sense and was "ditzy". Both descriptions are inaccurate, she
insists.
Andrews comes across as sharp and self-aware, with a perceptive
intelligence. Currently studying for a degree in IT and communications
with the Open University, she recalls: "I never fitted in. I was an
observer rather than part of the team – 'the tribe' as I thought of them
– because I never understood the unwritten rules."
The source of her difficulties was a mystery to everyone including her, until she was
diagnosed with Asperger syndrome last year – late diagnosis is typical of females with
autism which includes Asperger syndrome. Andrews says she always knew she was
different and that the diagnosis was a relief.
"I just thought I was a terrible person who couldn't make a job, or anything else, work
out. I dropped out of two previous university degree courses because of similar problems
around fitting in and communication," she says.
"Now that I understand more about myself and my autism, I want to raise awareness
among employers of what it is; that it isn't a bad thing, just a different thing. I would love
a job that took my skills and harnessed them, because of who I am, and what I am, rather
than in spite of it."
She says she can be "bubbly" if she tries really hard, but it exhausts her as it is learned
behaviour rather than something that comes naturally. "If I was myself, everyone would
think I was a boring cow."
Andrews, who wants to secure a place on a graduate scheme for librarianship when she
has finished her degree, is one of 100 ambassadors for the National Autistic Society
(NAS) and is helping promote its new Undiscovered Workforce campaign.
Launched in the House of Commons in March, with cross-party support, the campaign is
aiming to increase employment opportunities. "We need MPs to help us show how much
people like me have to contribute," she says. "One in every 100 of their constituents has
autism, after all."
Job interviews are a huge barrier to employment because of the requirement for good
communications skills. Just 15% of those with autism have full-time jobs according to
NAS research, while another 9% are in part-time work. These figures compare
unfavourably with the 31% of all disabled people in full-time work in the UK, while
more then a quarter of all graduates with autism are unemployed, the highest rate of any
disability group nationally.
The key difficulties are social interaction, establishing relationships, lack of emotional
reciprocation (which can give an impression of indifference), difficulty with flexibility of
thought, forward planning and thinking in abstract ways. The upside, however, is equally
considerable.
According to Jane Asher, who is president of NAS, autistic people often make better
employees than those known in the word of autism as "neuro-typicals" – ie, the rest of us.
She explains: "People with autism tend to be very reliable and punctual. They like
routine, and most won't mind doing repetitive tasks. Many are very good with maps and
figures. They are usually scrupulously honest – they just don't have the guile to be
anything else, and they can't lie.
"There is a huge lack of imagination on the part of employers who are missing out
massively by ignoring this untapped pool of labour."
Proponents like Asher say it's not about pushing the charity card – or even corporate
social responsibility – but about a real benefit to employers of taking on loyal, talented
people with unique skills. They also say that what is good for those with autism, can be
good for us all; for example, the need for employers of autistic people with autism to
brush up on communication skills, which can be beneficial to everyone.
Charles Manby, managing director of telecommunications, media and technology for
Goldman Sachs Investment Banking, is a keen supporter of integrating people with
autism into the workplace. "We employ an autistic guy to run our database and research
programmes, and he's really competent and well organised," Manby says. "His
communications skills are poor, but we're all used to him and he's used to us, so he talks
and chats.
"Graduates come and go – they stay between two to three years, but he is always there,
so, hopefully, our graduates will have gathered a good impression, and, through word of
mouth, might end up employing someone like him."
Manby hopes initiatives like this will encourage people to see normality in employing
autistic people. "We've taken on about 60, and we are very glad to be doing that from a
business point of view."
Employers open to taking on people with disabilities are increasingly being known as
"disability confident businesses".
A nurse with Asperger syndrome called Kay, says: "If everyone was like Charles, we'd
all be fine. He's what I call 'Aspie-friendly' – he gets us. So many employers don't, and
we need to educate them."
Like many non-medics working in healthcare, Kay got into trouble at work for failing to
observe a well-established hierarchy and is now awaiting a disciplinary hearing, having
been suspended on full pay for two years. She says she is going out of her mind with
boredom.
A care assistant (who wishes to remain anonymous) got into hot water for asking a
surgeon who walked out of theatre and straight past the hand-washing area, if he had
washed his hands. "He took offence," the care assistant says. "I thought I was doing the
right thing. The anti-MRSA posters are all over the hospital."
The Autism Act 2009, a response to continued poor employment rates for people with
autism, was the first-ever piece of disability-specific legislation to be passed by
government. The Department for Work and Pensions and the NAS have since published a
guide for employers, Untapped Talent, on taking on autistic people which highlights their
aptitude for problem-solving and attention to detail, high levels of concentration,
reliability, loyalty, excellent memory and detailed factual knowledge, retention,
resourcefulness and technical ability.
Everyone is different, however, and the minister for Welfare Reform, Lord Freud,
recalled a well-worn quote during his speech at the launch of the Undiscovered
Workforce, namely "Once you've met someone with autism … you've met someone with
autism."
Employers can put practical measures in place to help, such as providing purple filters for
computer screens – a special tool that filters out the bright colours and information
overload which overwhelm many autistic people.
When admin worker Kay Ribbons asked for a purple filter, however, colleagues accused
her of "milking it", using her autism to gain special treatment. Ribbons, who is now
unemployed, said: "It's just ignorance, but they really thought I was singling myself out
to get something extra, whereas the reality was that I needed it to do the job properly.
"My time in work so far has been very stressful, as I've constantly had to defend and
explain myself all the time. If employers were more aware, I'd be able to work in an
environment that supported me, rather than one that battled against me. All I want to do is
work, and I have a lot to offer, but I can't seem to fit in anywhere."
Sadly, her story is extremely common, with most autistic people experiencing something
similar.
Guy's and St Thomas' hospital in London set up an employment initiative last year called
Project Search, specifically to help people aged 18-30 with autism to gain work
experience serving food to patients on wards. Of the six people the pilot has trained so
far, two now have permanent jobs at the hospital.
Chris McGuire, head of the Guy's and St Thomas' catering services, says: "People are
needlessly frightened of autistic people because they are an unknown to them. Autistic
people actually make great employees because they follow instructions to the 'T'. They
like continuity, and they won't make their own decisions, so there are no loose canons."
McGuire admits life working with autistic people can be a learning curve for all involved.
"Sometimes funny things happen, like the 20-year-old who tried to join a doctors'
meeting because he had observed something about a patient," he recalls.
"But, mostly, autism can be a valuable asset and the NHS and the private sector need to
do a lot more to break down the ignorance that is preventing autistic people from
working."
• This article was amended on 10 April 2012 to clarify some details about Penny
Andrews' employment history and diagnosis.
Tips for working with people with autism
• As long as the employee with autism consents to disclosure of their condition, provide
colleagues with information and guidance on autism to enhance understanding.
• Brief, frequent one-to-one reviews are better than lengthy, irregular meetings for
autistic people.
• Don't ever rely on social cues to make a point – they won't be picked up.
• If a task isn't completed correctly, don't criticise as autistic people are often
perfectionists and this will upset them. Give honest, consistent and constructive feedback,
and explain precisely why it was wrong.
• Ensure the autistic employee has a well-structured work environment, away from
general office traffic, visual distractions and clutter.
• Be supportive around situations such as IT failures, which can be very stressful for
autistic people. Give specific instructions about what to do if something breaks down; ie,
don't say "use another photocopier if ours breaks down" – say "use the one on the second
floor".
• Make sure instructions are concise and specific to lay out the foundations for good
working practices. Don't say "give everyone a copy of this" – tell them exactly who gets a
copy.
http://www.guardian.co.uk/money/2012/apr/06/autistic-workers-employ...
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