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Monday, December 31, 2012

Happy New Year!

From all of us at NESCA, best wishes for a healthy, happy and prosperous new year!

Sunday, December 30, 2012

How Dads are Impacted When Kids Have Disabilities

From the Church4EveryChild Blog at drgrcevich.wordpress.com

December 24, 2012

Last year, an interesting study was presented at the International Society For Autism Research suggesting that over 30% of fathers of teens and young adults with autism experience symptoms of depression significant enough to warrant clinical attention.

That’s a striking finding.

For comparison, the National Institute of Mental Health reports that 7% of American men will experience depression in a given year. Examination of contributing factors to the higher rates of depression seen among men with teen or young adult children with autism may help us better appreciate what it’s like to walk in the shoes of a father of a child with a significant disability.

Based upon the experiences shared by fathers of kids treated in our practice, here are four thoughts as to why they may be more vulnerable to depression…

The impact having a child with a disability has upon one’s career. Fathers of kids with disabilities face a conundrum. Their presence at home may be even more important than it would be if their children were “typical,” given the impact that a child with a disability has upon everyone in the family. At the same time, the need to make enough money to pay for necessary treatments that are partially covered or not covered at all by health insurance is often present. They may have to work longer hours to pay for their child’s medical care. They may not be able to risk changing jobs if the new job provides less comprehensive insurance coverage. They may not be able to accept a promotion involving relocation when a move would result in the loss of access to needed educational and treatment services for their child.

The end result for a father of having a child with a disability may be unfulfilled career ambitions along with ongoing pressures to provide adequate financial support over and above what would otherwise be necessary to pay for costly treatments.

The challenge of providing for your family after your work life has ended. In our culture, the construct that as men, we accept the responsibility of providing for our families is so much a part of our identity that when we’re unable to do so, the experience can be psychologically devastating.

As the father of 15 and 12 year old girls who are “typical,” the challenge of figuring out how I’m going to pay for their education is pretty overwhelming. But, I can assume that each of them will grow up to be independent and self-supporting. What if your child is going to require lifelong care and support? What plans must you make in the event you or your wife are incapacitated? How will your child be cared for when you’re gone?

Your relationship with your wife may be different than you envisioned. It’s easy for women to invest so much of their time and emotion and energy in caring for and advocating for the needs of their child with a disability that they may not have much left to share with their husbands by the end of the day. You may have very little opportunity to spend quality time with your wife, because of the lack of available child care or the lack of funds for a night out together…hence the need for free respite. You may not get to spend the romantic weekends together that your neighbors and coworkers enjoy.

There’s a very good possibility that your sexual relationship with your spouse is going to suffer.

There’s also a good possibility that you and your spouse will be more isolated socially that you would be if you didn’t have a child with a disability. Where we live, parents tend to associate with other parents who share a common interest through the activities their kids are engaged in…sports, school, church, scouts, other extracurricular activities. Fathers of kids with disabilities are more likely to lack the networks of supportive relationships that other men enjoy.

You may silently grieve ambitions for your child that be unfulfilled and experiences with your child that you won’t get to share. In my mind, this may be the greatest risk factor contributing to depression for fathers of kids with disabilities and the factor least likely to be recognized and discussed.

All of us envision the relationships we hope to have with our kids and the shared experiences we hope to enjoy together. If you have a child with a condition such as autism in which their capacity for social interaction is by definition impacted, that’s a huge loss. Fathers of kids with disabilities may miss out on the experience of walking out on the field with their son or daughter on Senior Night for their sports team, teaching them how to drive, having their child treat them to a round of golf, or having the opportunity to play with their grandkids.

Several years ago, a very successful businessman sat in my office and sobbed when the reality set in that his son wouldn’t enjoy the types of friendships he had enjoyed growing up as a consequence of Asperger’s Disorder. The father was regularly paying for classmates to accompany their son on lavish ski vacations in Colorado or trips to beach resorts for diving and surfing lessons in the hopes that friendships would develop that never developed. Some parents live vicariously through their kids, but we all want our children to experience the things we treasure the most.

When they can’t, that hurts.

Thursday, December 27, 2012

Column: Is ADHD Overdiagnosed?

From USA Today

By MacLean Gander
December 8, 2012

We need to find middle ground so different kids have the chance to be themselves.

Is ADHD over-diagnosed? Are we medicating children too quickly and frequently? Or are we simply doing a better job of recognizing and treating a pervasive disorder that afflicts almost one in ten children, and nearly as many adults?

That seems to be the current debate. Is there a middle ground between these two views, one in which parents and educators can find some consensus? I think there is.


  • Critics question whether ADHD should be seen as a disorder, or just a natural human variation.
  • I believe societal factors have driven increases in diagnosis.
  • We must change schools to account for bright but restless kids.

Critics question whether ADHD should be seen as a disorder or just a natural human variation. They cite the limitations of a framework for diagnosis based on subjective impressions of symptoms rather than biological criteria used for many other medical problems.

Otherwise normal children are singled out because they don't fit into regimented school environments, these critics say, and they worry about the side-effects of the stimulant medications used to treat ADHD and the cozy alliance between the psychiatric profession and the pharmaceutical industry.

Critics of the status quo also argue that ADHD is a social construction based on societal needs to enforce compliance and passivity in school-age children.

The diagnostic manual of the psychiatric profession relies on a list of symptoms without reference to underlying causal factors. If you have the symptoms, you have ADHD.

The focus on medication as a primary treatment depends mainly on a body of research that some argue is far from robust. The long-term effects and unintended consequences of such medications are still open questions.

The psychiatric profession has yet to explain the explosion in some areas in the diagnosis of ADHD, nor are they able to point to solid research that calls for the diagnosis and pharmaceutical treatment of the disorder.

In general, the profession's stance is that ADHD is real, it is reflected in these lists of symptoms as reported by individuals, parents and teachers, and its treatment is by stimulant medication because stimulant medication works.

This seems legitimate. It seems clear that there is a neurological variation of brain development that afflicts about five percent of children. Symptoms include difficulties with impulse control, distraction, activating to do work and keeping information in mind.

A small percentage of children face these challenges pervasively, and for them, stimulant medication can truly make a difference. Recognizing and addressing ADHD in better ways was one of the great changes I have seen since I started work in the field in 1987.

But we have to question how and why a serious childhood disorder, which most agreed for the better part of the last century afflicted about 5% of the population, has expanded in the past two decades to become a cultural phenomenon.

I believe societal factors have driven increases in diagnosis.

Since No Child Left Behind was enacted in 2001, school systems have become less hospitable to students with certain learning profiles. Teachers, under pressure to guide their classes to high-performance on standardized tests, can control the classroom more effectively if they can recommend that high-energy students be controlled through medication.

Moreover, the competition to enroll in a top college or to succeed in a competitive workplace, coupled with relaxed criteria for ADHD diagnosis, has led families and individuals to seek and find legal pathways to these medications.

This obviously is a very slippery slope. If the annual rate of increase in diagnosis of ADHD holds steady at between 3 and 5%, a couple of decades from now we will have reached the point where more than one in five individuals will be diagnosed with the disorder.

This possibility defies logic, but it is the course we are headed on unless we can find our way back to a middle ground.

The way to the middle is anything but obvious. Somehow we must change school systems to account for bright restless kids, and as a society, we must recognize that these problems are real.

To borrow my employer's tagline, we all need to "take a different path" to ADHD's middle ground – working together to better support our nation's next generation of learners and leaders.


MacLean Gander is a professor of English at Landmark College, which serves students with learning disorders.

Wednesday, December 26, 2012

Back to Basics: Helping You Help Your Child with LD

From SmartKidswithLD.org

By Marcia Rubinstien, M.A., CEP
December 17, 2012

Parenting children with LD, ADHD and related disorders is challenging.

Complex academic, social, emotional, and behavioral issues can tax a family’s ability to grapple with adversity, identify appropriate strategies and accommodations, and coordinate appropriate professional support—to say nothing of getting through the normal day-to-day obstacles that all families face.

Parents who invest time and energy in supporting the complex needs of children with learning disabilities often forget to nurture the most fundamental resource they have:


Since children who learn differently display unique clusters of assets and deficits, it can be difficult to understand the factors that determine a child’s successes, failures, fears, and frustrations.

Nevertheless, parents who find resources that nurture their own actions are in a better position to discover their child’s strengths and advocate effectively for them.

Breaking the Frustration Cycle

A search of what can help your child will ultimately produce a safety net that can guarantee optimal parent response. There are three components to guaranteeing success for your child, which will, in turn, minimize your frustration. Following are guidelines that will help you summon the energy to deal with the issues at hand.

1.) Know your child. Make sure that you have identified the conditions that maximize your child’s learning potential. Confirm that these conditions are consistently upheld. Be sure to monitor and work with those responsible for your child’s well-being.

2.) Build a network of reliable support professionals. Develop a group of people who understand your child’s issues, respect your family dynamics, and support all concerns related to your child’s academic, social, emotional and behavioral well-being. Refine and expand your network as necessary in response to changing developments at school, at home, and in the community.

3.) Don’t forget to breathe. The commonplace directive to secure your own oxygen mask before trying to help others may seem trite, but it has relevance to families of children with LD. It can be frustrating to watch a school system force your multi-shaped and uniquely configured “peg” into a narrowly defined round hole.

Frustration, however, is a negative force that not only depletes parental resources, but can also poison a child’s environment. Be proactive, not reactive. Fill your life with activities that support your own talents, desires, and competence.

The best gift you can give to a child with LD is a parent who models optimism, hope, and triumph over adversity.


The author is an educational consultant and the author of Raising NLD Superstars: What Families with Nonverbal Learning Disabilities Need to Know about Nurturing Confident, Competent Kids.

Sunday, December 23, 2012

Season's Greetings from NESCA

Our best wishes for a safe, healthy and happy holiday season!

Study: Fitter Kids May Make Better Grades

Study: Fitter Kids May Make Better Grades

From HealthDay.com via Yahoo News

By Serena Gordon
August 4, 2012

"The more physically fit kids were, the higher their scores."

Middle school students who are physically fit are likely to score higher on standardized tests measuring reading and math abilities, a new study has found.

And, the average scores went up in correlation with levels of fitness, the findings showed.

"The more physically fit kids were, the higher their scores," said the study's lead author, Dr. Trent Petrie, director of the Center for Sport Psychology at the University of North Texas in Denton.

"Parents should encourage their kids to be physically active. There are some real cognitive and academic benefits that come from physical fitness," Petrie said.

Results of the study are scheduled to be presented Friday at the annual meeting of the American Psychological Association in Orlando, FL.

The study included more than 1,200 middle school students from five schools in a suburban area of Texas, with 561 boys and 650 girls.

About 57 percent of the children were white, and nearly one-quarter were Mexican American. Nine percent were black and about 2 percent were of Asian descent.

The school district provided the researchers with information on the children's race, age, grade level and whether they qualified for the free school lunch program, which was an indicator of the family's socioeconomic status. The schools also provided scores to the tests, which were given between one and four months after the researchers had assessed the children's levels of fitness.

Fitness tests were administered during physical education classes to determine the youngsters' heart and lung health (cardiorespiratory fitness), as well as their body mass index (BMI), an indicator of how much body fat a person has. The children also filled out questionnaires that helped the researchers determine factors such as self-esteem and social support.

"... for both boys and girls, higher levels of cardiorespiratory fitness predicted better scores on both the math and reading tests." 

After accounting for factors such as age, sex, family income and self-esteem, the researchers found that for both boys and girls, higher levels of cardiorespiratory fitness predicted better scores on both the math and reading tests.

For boys, perceived social support also seemed to boost their reading scores, the investigators found.

In girls, while being physically fit predicted higher reading scores, so too did a higher BMI -- which indicates more body fat. "We were a little surprised by this finding," Petrie said.

"It was not as strong an association as the one with physical fitness," he added. The authors suspect it may have something to do with girls this age entering puberty, which may be related to a higher BMI and slightly higher cognitive (brain) development. He said he plans to look for this relationship again in larger studies to see if it was a chance finding, or if the association holds up.

"...we can say that there is a strong and predictive relationship between physical fitness and academic performance."

"While we can't say 100 percent that physical fitness causes better academic performance, we can say that there is a strong and predictive relationship between physical fitness and academic performance," Petrie said.

"It's hard to tease apart the exact reason for this association," said Becky Hashim, an attending clinical psychologist and assistant professor in the departments of psychiatry and pediatrics at the Children's Hospital of Montefiore, in New York City.

"It may be that the children are getting more oxygen. When the heart and lungs are working at a higher capacity, it may allow the brain to work at peak performance. Children who are less fit may be sleepier during school," she noted. "I personally feel that there's probably a strong relationship between the confidence you get from being able to do something physical well and academic performance."

Whatever the reason behind this association may be, "there's certainly no harm in pushing physical fitness," Hashim added.

"Physical fitness may make you feel better, give you more confidence and improve your performance across the board," she said.

"Physically fit kids are happier, have higher self-esteem, tend to have better relationships, and now we're beginning to see, there also seem to be benefits cognitively and academically." 

Petrie agreed. "Physically fit kids are happier, have higher self-esteem, tend to have better relationships, and now we're beginning to see, there also seem to be benefits cognitively and academically. Our study sends a strong warning to policymakers to reconsider the utility of physical education classes for kids," he said.

Because this study was presented at a medical meeting, the data and conclusions should be viewed as preliminary until published in a peer-reviewed journal.

More Information

Read more about keeping kids active at the U.S. National Heart, Lung, and Blood Institute.

Friday, December 21, 2012

Free E-Book: A Parent's Guide to Response-to-Intervention (RTI)

From NCLD.org - The National Center for Learning Disabilities

December 19, 2012

Millions of school-age children experience difficulties with learning.
 Their struggles in school may be due to factors such as cultural or language
 differences, poor attendance or a lack of appropriate instruction.

In some cases, a disability such as a learning disability can make learning difficult for a child.

This FREE E-book includes:
  • Parent Perspectives – Real-world examples from parents who have experience with RTI.
  • Glossary – Learn the important terms you'll need to know during the process.
  • Tiered Intervention 101 – Concise explanations of the tiered model and why it works. 
  • RTI and Special Education - How the RTI approach affects the needs for special education services. 
  • Checklists and Worksheets – Print out documents that will help guide you through the process.


Complete NCLD's short form you'll find HERE to download their useful, FREE E-book.


Your Child’s Rights: Response to Intervention

From Smart Kids with Learning Disabilities

By Matthew Saleh, J.D., M.S.
November 27, 2012

In recent years, the use of Response to Intervention (RTI) by schools has become a topic of controversy.

This can be traced back to the 2004 reauthorization of the Individuals with Disabilities Education Act (IDEA), when the law was changed to reflect new standards for identifying and educating children with learning disabilities.

The purpose of RTI was to encourage schools to identify students facing difficulties early on and to provide appropriate instruction in order to prevent the unnecessary referral of children for special education services.

Delaying Tactic?

Many parents and advocates complain that the RTI process sometimes serves as an excuse for schools to delay the evaluation and referral of students who may need special education services.

Responding to those concerns, the U.S. Department of Education (DOE) issued rules clarifying that under no circumstances should RTI prevent parents from requesting an evaluation or seeking special ed services for their child.

The DOE further noted that RTI must include research-based data collection using “brief, efficient, repeatable testing” as well as parental notification regarding the data to be collected, the methodology used for improving their child’s learning, and the parent’s right to request an evaluation.

Parents are entitled to see all data and methodology being used in their student’s RTI process, and can make a formal request for this information at any time if the school has not already offered it.

Parents should also be aware that, under the law, RTI must minimally include:
  • Appropriate instruction by qualified personnel in a general education setting
  • Screenings for all students in the general education setting to identify those who are “at risk” (i.e. not making academic progress at expected rates)
  • Instruction matched to student need with increasing levels of targeted intervention
  • Repeated assessment of student achievement (at least three times per year)
  • Application of this information to decisions about changes in student goals, instruction and/or services
  • Written notification to parents when a student requires an intervention beyond general education.

Implementing RTI

RTI should be implemented using a “three-tiered” approach. (Different states have different guidelines and timeframes for implementing the tiered approach to RTI):
  • Tier 1: Core Instruction: This is intended for all students, with many states mandating that it occur for one school year, repeated each year from K-4th grade. Not all states require a full school year.
In Tier 1, the general education teacher provides primary intervention to all students through “variable and flexible grouping formats in the general education setting.” However, once a student is identified as “at risk”—regardless of when this occurs during the year—that student must be transitioned to RTI Tier 2 immediately.
This is a common point of confusion for parents, and even for schools. While Tier 1 screenings “repeat” from K-4th grade for students who have not been identified as “at risk,” this does not mean that the process “reboots” every year for students who havebeen identified as “at risk” and should therefore have been transitioned to Tier 2 in a timely fashion.
  • Tier 2: Supplemental Intervention: This is usually intended for roughly 10-15% of students who are not making adequate progress, and is “short term,” lasting from 8 to 20 weeks in most states.
Tier 2 intervention is provided by skilled, trained, and knowledgeable personnel to students who were identified as “at risk” during Tier 1, and usually occurs both inside and outside the general education classroom for 20-30 minutes,   3-4 times per week.
  • Tier 3: Customized Intervention: This is intended for roughly 1-2% of students who are not responding to Tier 2 intervention, and is also a “short term” intervention, lasting from 8 to 20 weeks in most states.
Tier 3 intervention must be provided by highly trained and knowledgeable school personnel capable of providing specialized intervention, usually outside of the general education classroom for 30-60 minutes, 5 times per week.
For parents, it is important to note these timeframes and to identify the specific timeframes used in their state, as use of the RTI process to delay a student’s evaluation or referral for special education services is strictly forbidden under IDEA.
One of the inherent difficulties in the RTI process is that it is utilized inconsistently, with different school districts utilizing different frameworks, and in some cases failing to follow federal or state guidelines.
With the exception of variations in the timelines used for implementing the “three-tiered” RTI approach, the guidelines discussed in this article are federally mandated and schools should not be deviating from them. This is particularly true with regard to the misuse of RTI as a delay tactic for evaluating or referring students.
RTI is meant to supplement and improve the educational tools available to students with specific learning disabilities, not to undermine the purpose of the IDEA. Parents should be encouraged to check their individual state’s timelines for the three-tiered RTI approach (usually available online).
However, in doing so, parents should remain clear that these timeframes must never be cited by schools as a rationale for delaying a child’s right to be evaluated or referred for special education services.
Matthew C. Saleh is a graduate of the Syracuse University College of Law and is pursuing a Ph.D. in Politics & Education at Columbia University. Saleh works for the Burton Blatt Institute: Centers of Innovation on Disability at Syracuse University.

Tuesday, December 18, 2012

Link between Autism and Planned Violence Discounted by Experts

From the Boston.com Blog "Daily Dose"

By Deborah Kotz
December 17, 2012

“What little research we do have suggests that these people are much more likely to be victims of violence than perpetrators.” 

Unconfirmed reports after the Connecticut school shooting that gunman Adam Lanza had been diagnosed with a milder form of autism prompted strongly-worded statements from autism advocacy groups that the developmental disorder was not associated with “planned violence.”

Psychologists who treat people with autism point out that pre-meditated violence toward others isn’t one of the traits associated with the disorder in the diagnostic manual.

While some individuals may thrash out violently when feeling emotionally overwhelmed -- usually those at the extreme end of the autism spectrum -- there’s no evidence linking the condition to the type of forethought required to pack guns into a car, shoot through the entrance of a locked school, and methodically gun down tiny strangers in pigtails and baseball caps.

“Autism is related to different ways of processing information in the brain, but not in those areas related to violence,” said Dr. Donnah Nickerson-Reti, a neurodevelopmental psychiatrist with a private practice in Boston. Generally, people on the autism spectrum tend to be driven by rules and logic, making them highly cognizant of laws that shouldn’t be broken, and taking extreme efforts not to break them, she said.

“Can autistic individuals get flooded emotionally and act irrationally?” said Nickerson-Reti. “Of course they can, like everyone else, but that’s not a defining characteristic.”

There’s a dearth of studies measuring how often any sort of psychotic or delusional behaviors occur in the context of an autism diagnosis. “What little research we do have suggests that these people are much more likely to be victims of violence than perpetrators,” said epidemiologist David Mandell, who conducts research at the University of Pennsylvania on improving the quality of autism care.

That’s because individuals with the developmental delays typical of autism tend to have a hard time reading social cues or detecting danger signs from someone who’s threatening them.

Typically autism associated with impulsive aggressive behaviors occurs in those who are low-functioning, not with milder forms of the condition such as Asperger’s Syndrome, which Lanza was purported to have had.

“Most of the folks who come here are kind, gentle, and peace-loving,” said Dania Jekel, executive director of the Asperger’s Association of New England in Watertown. “It’s a shame for them that this association with violence has been made.”

Michael Appell, of Newton, said his 24-year-old son who has Asperger’s hasn’t decided yet whether to reveal his condition to his new boss at a high tech firm.

“My son has never had any violent tendencies, but many people may now paint a different profile of him, which makes this whole thing shocking and disconcerting.”

Some of those who treat autism note that they do occasionally see patients who pose a real risk of harming others -- even when not acting out on impulse. “I’ve had autistic patients like this,” said Dr. Martha Herbert, a pediatric neurologist at Massachusetts General Hospital and co-author of the Autism Revolution. “But I wouldn’t say it’s the autism causing those behaviors. We need to learn more about the underlying biology to see how much autism overlaps with other psychiatric conditions.”

Autism has been linked to a wide range of medical problems such as gastrointestinal illnesses, low bone density, and asthma, but researchers still haven’t determined whether it’s associated with psychiatric conditions such as bipolar disorder and schizophrenia, which, when untreated, have been associated with violence.

What’s not known is how often those who assault loved ones during fits of rage are misdiagnosed with a form of autism when they really have a form of psychosis or a personality disorder. “There’s not a lot of cohesion among psychiatrists about how to define the entire diagnostic category of autism including Asperger’s,” said Nickerson-Reti. “We don’t always see the same thing” with a given set of symptoms.

Many mental health practitioners are upset by a new definition of autism that’s expected to be published in the updated DSM-5 psychiatric diagnostic manual in 2013. It eliminates subgroups of the disorder such as Asperger’s, and distills the diagnosis down to a simple gradient from mild to severe.

But most agree that the most pressing issue is getting adequate help to those who need it most, regardless of whether they have autism or some other mental health disorder. “How do we identify people who are at increased risk of mental illness and intervene in a meaningful way?” said Mandell.

That said, the rate of mental illness doesn’t vary much among industrialized countries, but the rate of gun violence does. “I think the overwhelming difference,” Mandel added, “is access to firearms.”

Deborah Kotz can be reached at dkotz@globe.com. Follow her on Twitter @debkotz2.

Mother of Child with Asperger's: "Autism Is Not an Explanatory Factor in (Adam Lanza's) Actions"

From PRI/WNYC's "The Takeaway" with John Hockenberry

December 17, 2012


LISTEN to John Hockenberry's Conversation with Science Writer and Blogger Emily Willingham (4:29). Click on the player's smaller of two "play" arrows.


As conversations about the shooting in Newtown, Connecticut begin to center around guns and mental health, one woman is advocating a careful look at the latter. Science Writer Emily Willingham has a son (11 years old) who was diagnosed with Asperger's Syndrome. She said:

"No one knows as of this writing what drove the Connecticut shooter to kill 20 children and 7 adults, point blank, although obvious candidates are rage, hate, a huge grudge against humanity, and some triggering event. But if he turns out to have been someone on the spectrum, I'd like to remind everyone that autism is not an explanatory factor in his actions."

Willingham wrote an excellent blog post arguing her case. You can read it here.

Is Asperger's A Vanishing Diagnosis That's Already Lost Its Meaning?

From Forbes Magazine's Pharma & Healthcare Blog

By Emily Willingham
Ocober 29, 2012

Benjamin Wallace, writing in New York Magazine about Asperger’s and its use, overuse, and abuse as a term, begins his piece with a question from the late Nora Ephron:

"Is every man in America somewhere on it?” Nora Ephron wondered about the autism spectrum in an e-mail to a friend a few months before her death. “Is every producer on it? Is every 8-year-old boy who is obsessed with statistics on it? Sometimes, when we say someone is on the spectrum, do we just mean he’s a prick? Or a pathological narcissist?

I notice that at least three times a week I am told (or I tell someone) that some man or other is on the spectrum.”

Is Everyone on the Autism Spectrum? — N.Y. Magazine

The article ranges over a great deal of social interpretation of Asperger’s and autism, just as Ephron seems to have encountered. It’s true that this term has entered the lexicon as shorthand for a collection of traits–smart but awkward, socially inept–and that armchair psychologists (a.k.a. “pundits”) have suggested the diagnosis for everyone from the president to the perpetrator of the horrific Aurora movie theater shootings.

But popular application of “Asperger’s” doesn’t make the recipient autistic any more than a recent application of the pejorative “retard” makes Barack Obama intellectually disabled.

Asperger’s is a diagnosis, one that’s been around now for a couple of decades, one that is codified in the current manual that clinicians use to make the diagnosis. If someone meets these criteria, they meet the definition of Asperger’s. Sitting on Fox or NBC and saying someone seems to have Asperger’s or deciding that the narcissist in your life must be an Aspie doesn’t, Picard-like, “make it so.” And dilution of the term into meaninglessness doesn’t unmake autism in people who are autistic.

"...dilution of the term into meaninglessness doesn’t unmake autism in people who are autistic."

The New York article comes around eventually to the fact that social abuse and casual use of the term aside, people with Asperger’s have significant deficits that unquestionably affect their quality of life, noting the high unemployment in this population, for example.

But to get to that point at the end of the article, we must first dig our way through commentary from Bryna Siegel, a clinician who’s rather (in)famous in autism circles for her comment–repeated in the New York Magazine article and elsewhere–that if someone left their secretary’s number as a callback about a consultation for Asperger’s, she told her coordinator “don’t call them back” because people with Asperger’s don’t have secretaries.

Comments like these, delivered with an attitude of blanket skepticism, do a real disservice to autistic people because they embed or confirm misconceptions in the public mind: people who claim an Asperger’s diagnosis are big phonies, and truly autistic people will never, ever amount to anything because they don’t function well enough to have secretaries.

As I note here, I don’t recall seeing anything in the criteria for an Asperger’s diagnosis that precludes having a secretary, although I see plenty to suggest having an assistant would be helpful. The people contacting Siegel are reaching out because they feel they might have discovered something significant and explanatory about themselves, and what do they get from this quarter? Radio silence in the absence of all other data because they have a “secretary.”

The crux of that comment seems to be related to function, and that certain functions like verbal communication capacities or having an administrative assistant preclude an autism diagnosis. But I know several professionals who see a wide range of people on the autism spectrum and who have a very different attitude about the relevance function.

And autistic people themselves can and do speak to the realities of being someone for whom a diagnosis fits and who understand that the concept of function –as in “high” versus “low“– isn’t confined only to a capacity for self-expression others can understand or to having a secretary.

After we wade through anecdotes about how people apply the Asperger’s diagnosis to rationalize a spouse’s poor behavior or a divorce, the article takes us to a final scene of what people with the diagnosis experience, what they feel and talk about, what their struggles are.

People with Asperger’s do struggle, in part because of an existing social construct that sees only their deficits and not their potential, and in part because of a growing pop-sci dismissiveness and dilution of what “Asperger’s” even means, or what it will mean once it ceases to exist as a label.

Confusion like this and the considerable overlap of “normal” and atypical behaviors in all of us leaves labels–Asperger’s, schizophrenia, bipolar disorder–open to these dilutions and casual applications, one reason I’d like to see an overhaul of the labeling approach in favor of addressing specific gaps. See, that way, my son could still get help, but also possibly have a secretary someday.

And what about folks like those who contacted Siegel, callers whose success supported an administrative assistant but whose personal experiences left them seeking clinical insight? Many parents have epiphanies of recognition about themselves when their child receives an autism diagnosis, although a lot of us don’t pursue anything officially.

Indeed, a recent genetics study (news release) bears out the idea that hints of autism in the parents and other family members can become revelations in the child, something I’ll be writing about this week.

But people like me who probably would have fallen under the spectrum label had it been around in our childhoods relate to, share, and deeply empathize with the struggles of autistic people, particularly when we see our children having them, too, and of course, we wonder where we fit in.

People like my son still face these struggles and the popular perception of autistic people who can talk as fakers and phonies or as “just quirky.” But the struggles are real.

If “Asperger’s Disorder” is diluted beyond recognition in the popular lexicon or effaced entirely from clinical terminology, those who meet the current criteria for it will still be around and still have all the behaviors that make it autism, even if someday, they have an administrative assistant of their very own.

About Emily Willingham

Author Emily Willingham calls herself "a science consumer" who "writes about the science they're selling you." She is a science writer and editor and former biology professor whose work has been published in Slate, Scientific American's blogs, The Scientist and elsewhere. Willingham focuses on how science filters to consumers, and how consumers make decisions about science. Frequent honorable mentions: autism, parenting and the news media.

Sunday, December 16, 2012

IDEA Words and Terms to Know (and Post on Your Refrigerator Door?)

From NCLD.org - The National Center for Learning Disabilities

By the NCLD Public Policy Team
December 10, 2012

Tools and procedures that provide equal access to instruction and assessment for students with disabilities. Designed to "level the playing field" for students with disabilities, accommodations are generally grouped into the following categories:
  • Presentation (e.g., repeat directions, read aloud, use of larger bubbles on answer sheets, etc.)
  • Response (e.g., mark answers in book, use reference aids, point, use of computer, etc.)
  • Timing/Scheduling (e.g., extended time, frequent breaks, etc.)
  • Setting (e.g., study carrel, special lighting, separate room, etc.).
Americans with Disabilities Act
Federal law that protects persons with disabilities from discrimination in the operations of public businesses and governments.

Behavior Intervention Plan (BIP)
A plan to address problem behavior that includes, as appropriate, positive behavioral interventions, strategies, and supports; program modifications; and supplementary aids and services that may be required to address the problem behavior.

Child with a Disability
A child who has a disability as defined in one of the 13 disability categories in IDEA and who needs special education and related services because of the disability; or a child aged 3 through 9 who is experiencing developmental delay.

Child Find
Ongoing activities undertaken by states and local school districts to locate, identify, and evaluate all children residing in the state who are suspected of having disabilities so that a free appropriate public education (FAPE) can be made available to all eligible children, including all children in public and private schools, including religious schools.

Courses of Study
Middle and high school course work (or classes) that lead to a certain type of diploma and/or are required for post-secondary education.

Curriculum-Based Measurement (CBM)
Tools for measuring student competency and progress in the basic skill areas of reading fluency, spelling, mathematics and written language.

Developmental Delay
A disability category states may use for certain students aged three through nine as a way to provide early services for students suspected of having a disability. If used, the definition of developmental delay is determined by the state and may include a child whose development, as measured by appropriate diagnostic tests and procedures, lags behind peers in one or more of the following areas:
  • physical development,
  • cognitive development,
  • communication development,
  • social or emotional development,
  • adaptive development;
and who, because of such delays, needs special education and related services.

Disability Categories
IDEA disability categories include:
  • autism,
  • deaf-blindness,
  • deafness,
  • emotional disturbance,
  • hearing impairment,
  • mental retardation (intellectual disability),
  • multiple disabilities,
  • orthopedic impairment,
  • other health impairment (e.g., asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia and Tourette syndrome),
  • specific learning disability, (e.g., Perceptual Disabilities, Brain Injury, Minimal Brain Dysfunction, Dyslexia, Developmental Aphasia), speech or language impairment, traumatic brain injury, visual impairment (including blindness),
  • developmental delay.
Due Process Complaint
A written complaint filed by a parent or a school district involving any matter relating to the identification, evaluation, educational placement or provision of a free, appropriate, public education to a student with a disability. Due process complaints must be filed within two years of the matter in dispute.

Due Process Hearing
A formal, quasi-legal procedure before an impartial hearing officer or administrative law judge (or panel of judges) who is not an employee of the state educational agency or school district. Both the parents and the school district present arguments and evidence.

Early Intervention Services
Services to infants and toddlers provided under Part C of IDEA. Part C established the Program for Infants and Toddlers with Disabilities, a federal grant program that assists states in operating a comprehensive statewide program of early intervention services for infants and toddlers with disabilities, aged birth through age 2 years, and their families.

Early intervention services include multidisciplinary evaluation of needs of children and family-directed identification of the needs of each family as set out in an Individualized Family Service Plan (IFSP).

The determination that a student is a child with a disability.

Free Appropriate Public Education (FAPE)
Special education and related services that are provided at public expense, under public supervision and direction, and without charge to the parent, and that meet the standards of the state education department.

Special education and related services must be provided in conformity with an Individualized Education Program (IEP) as required by IDEA.

Functional Behavioral Assessment (FBA)
A problem-solving process for addressing student problem behavior. FBA relies on a variety of techniques and strategies to identify the reasons for a specific behavior and to help IEP teams select interventions that directly address the problem behavior.

Functional Skills
Skills needed for independent living, such as cooking, comparison shopping, working with or managing money, using public transportation, and knowing how to be safe in the community.

General Education Curriculum
The body of knowledge and range of skills that all students in the state are expected to master.

Interim Alternative Educational Setting (IAES)
A setting other than the student's current placement that enables the student to continue to receive educational services according to his or her IEP. The IAES must enable the student to continue to participate in the general education curriculum, although in another setting, and progress toward meeting the goals set out in the IEP.

Students in an IAES should also receive, as appropriate, a functional behavioral assessment, behavioral intervention services and modifications that are designed to address the behavior violation so that it does not happen again. The particular IAES is determined by the student's IEP team.

Individualized Education Program (IEP)
A written statement for each child with a disability that is developed, reviewed, and revised according to the requirements of IDEA.

Informed Consent
Procedure to ensure that the parent:
  • Has been fully informed of all information related to the proposed activity (in his native language, or other mode of communication)
  • Understands and agrees in writing to carrying out the activity for which his consent is sought
  • Understands that giving consent is voluntary and may be revoked at any time
  • Understands that revoking consent will not apply to an activity that has already occurred
  • Informed consent is required for an evaluation, a reevaluation and for the initial delivery of special education services.
A change in instructing the student in the area of learning difficulty to try to improve learning and achieve adequate progress.

Least Restrictive Environment
To the maximum extent appropriate, children with disabilities are to be educated with children who are not disabled. Special classes, separate schooling, or other ways of removing children with disabilities from the regular educational environment should only occur when the nature or severity of the disability is such that education in regular classes cannot be achieved satisfactorily with the use of supplementary aids and services.

A confidential, voluntary process that allows parties to resolve disputes without a formal due process hearing. An impartial mediator helps the parties to express their views and positions and to understand the other's views and positions. The mediator's role is to facilitate discussion and help parties reach an agreement — not to recommend solutions or take positions or sides.

No Child Left Behind
The current version of the Elementary and Secondary Education Act (ESEA) — the principal federal law affecting public education from kindergarten through high school in the United States.

A natural, adoptive or foster parent; an individual acting in the place of a natural or adoptive parent; an individual who is legally responsible for the child; a guardian; or a surrogate parent.

Post-secondary Education
Formal education or training beyond high school, including college, university, vocational school and trade school.

Pre-referral Interventions
Interventions delivered in the student's regular classroom that attempt to improve learning prior to a referral for formal special education evaluation.

Prior Written Notice
A written notice that the school must provide to the parents of a student with a disability within a reasonable time if they wish to:
  • Evaluate the student
  • Determine whether the student is eligible for special education services
  • Change the student's evaluation or educational placement or educational plan (IEP)
  • Refuse the parents' request to evaluate their child or change their child's educational plan (IEP) or placement.
Progress Monitoring
A scientifically based practice used to assess students' academic performance and evaluate the effectiveness of instruction. Progress monitoring can be implemented with individual students or an entire class.

Related Services
Supportive services that are required to assist a child with a disability to benefit from special education. Related services include:
  • transportation,
  • developmental and corrective services,
  • speech-language pathology and audiology services,
  • interpreting services,
  • psychological services,
  • physical and occupational therapy, 
  • recreation (including therapeutic recreation),
  • counseling services (including rehabilitation counseling),
  • orientation and mobility services,
  • medical services for diagnostic or evaluation purposes.
Related services also include school health services, school nurse services designed to enable a child with a disability to receive a free appropriate public education as described in the child's IEP, social work services in schools, and parent counseling and training.

Response-to-Intervention (RTI)
A comprehensive, multi-step process that closely monitors how the student is responding to different types of services and instruction.

Resolution Session
A mandatory meeting that the school district must convene within 15 days of receiving the parents' due process complaint. The resolution session includes parents, members of the IEP team relevant to the complaint, and a representative of the school district who has decision-making authority.

Section 504 of the Rehabilitation Act
A federal law that requires a school district to provide a free appropriate public education (FAPE) to each child with a disability in the district's jurisdiction.

School District
The term "school district" and "school" are used to refer to the entity that has legal authority, control and responsibility for public education in a city, county, town (or combination of these), or other subdivision of a state.

Scientific Research-Based Instruction
Curriculum and educational interventions that are research based and have been proven to be effective for most students

Special Education
Specially designed instruction, at no cost to parents, to meet the unique needs of a child with a disability, including instruction conducted in the classroom, in the home, in hospitals and institutions, and in other settings; and instruction in physical education.

Specially-Designed Instruction
Ways that special education professionals adapt the content, methodology (approaches to teaching certain grade level content), or the delivery of instruction to address the unique needs that result from the child's disability. Specially designed instruction should also ensure that the eligible child has access to the general curriculum so that he or she can meet the educational standards of the school district that apply to all children.

Specific Learning Disability
A disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, which disorder may manifest itself in the imperfect ability to listen, think, speak, read, write, spell, or do mathematical calculations. The term includes such conditions as:
  • perceptual disabilities,
  • brain injury,
  • minimal brain dysfunction,
  • dyslexia,
  • developmental aphasia.
The term does not include a learning problem that is primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.

State Complaint
A written complaint that can be filed by any organization or individual claiming that a school district within the state has either violated a requirement of Part B of IDEA (the part that contains all requirements regarding the delivery of special education services) or the state's special education law or regulations. State complaints must be filed within one year of the alleged violation.

Summary of Performance
A summary of the student's academic achievement and functional performance that includes recommendations to assist the student in meeting his or her post-secondary goals.

Supplemental Aids and Services
Aids, services, and other supports that are provided in regular education classes or other education-related settings to enable children with disabilities to be educated with nondisabled children to the maximum extent appropriate. Examples of supplemental aids and services might be assistive technologies such as a computer or adapted physical education

Transition Services
A coordinated set of activities that:
  • Improves the academic and functional skills of the student in order to facilitate the student's movement from school to post-school activities such as post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation;
  • Is based on the individual student's needs, taking into account his or her strengths, preferences, and interests;
  • Includes instruction, related services, community experiences, the development of employment and other post-school adult living objectives and, when appropriate, the acquisition of daily living skills and functional vocational evaluation.
Universal Screening
A step taken by school personnel early in the school year to determine which students are "at risk" for not meeting grade level standards. Universal screening can be accomplished by reviewing a student's recent performance on state or district tests or by administering an academic screening to all students in a given grade. Students whose scores on the screening fall below a certain cut-off point are identified as needing continued progress monitoring and possibly more intensive interventions.

Vocational Rehabilitation Agency
A publicly funded state agency that provides direct and indirect services to youth with disabilities as they transition from school to work, in order to maximize their employability, independence and integration into the workplace and the community.

Vocational Rehabilitation (VR)
A set of services offered to individuals with disabilities designed to enable participants to attain skills, resources, attitudes, and expectations needed to compete in the interview process, get a job, and keep a job.

Friday, December 14, 2012

Special Pediatrics Supplement on Autism and Other Neurodevelopmental Disorders

From AutismSpeaks.org Science News

November 2, 2012

“Our hope is that this issue will help inform the health care community and parents about the needs of children with autism and the evolving knowledge, practices and guidelines that can ultimately improve the quality of health care that children and their families receive.”

The journal Pediatrics has published a special supplement on the health and medical treatment of children and adolescents with autism spectrum disorder (ASD) and other neurodevelopmental disorders. The issue highlights treatment guidelines for physicians, and research reports on medical issues of interest to families affected by ASD.

As families know, many individuals with autism have associated medical conditions. These include seizures, sleep problems, gastrointestinal disorders, psychiatric conditions and nutritional deficiencies. In addition to compromising a child’s health, these issues can affect behavior, development and a child's ability to learn.

The leadership of Autism Speaks Autism Treatment Network (ATN) – through its federally funded work as the Autism Intervention Research Network on Physical Health( AIR-P)* – contributed significantly to the supplement.

James M. Perrin, M.D., FAAP, and Daniel Coury, M.D., FAAP, served as co-editors. Dr. Perrin directs the AIR-P and also the ATN Clinical Coordinating Center, at Boston’s MassGeneral Hospital for Children. Dr. Coury serves as the AIR-P and ATN medical director, at Nationwide Children’s Hospital, in Columbus, Ohio.

“Our hope is that this issue will help inform the health care community and parents about the needs of children with autism and the evolving knowledge, practices and guidelines that can ultimately improve the quality of health care that children and their families receive,” Drs. Perrin and Coury write in their introduction.

“The supplement brings together in one place a rich and diverse compilation of clinical research and practice improvement related to the care of children and youth with autism and related neurodevelopmental disorders.”

The Pediatrics supplement includes recommendations for physicians developed by Autism Speaks ATN and AIR-P. These address the issues of constipation, insomnia and medications for associated psychiatric conditions.

It also includes studies on psychiatric medications, complementary and alternative treatments, sleep and behavior problems, as well as nutrition (italics ours).

“Together, these articles provide a broad look at issues that families face as they interact with the health care community and seek the best treatments available for their children with autism and related neurodevelopmental disorders,” Drs. Perrin and Coury write.

Below are summaries of some of the supplement articles. Several highlight the funded research activities conducted by the AIR-P at Autism Speaks ATN centers. Others used information from the ATN Registry.

Medications for Psychiatric Problems and Mood Disorders

Many individuals with ASD take medication for associated disorders such as hyperactivity, anxiety or depression. Yet there has been little research on the extent of their use. Looking at information from over 2,800 children in the ATN Registry, researchers found that 27 percent of children and adolescents with ASD were taking one or more psychotropic medicines.

The rates increased as children got older. Among children aged 3 to 5 years, 11 percent were taking one or more medications. This rose to 46 percent among 6- to 11-year-olds and 66 percent among 12- to 17-year-olds.

“Families often have difficulty determining whether medication is needed as part of the treatment plan for a child or adolescent with ASD and challenging behavior,” the authors write. Through its AIR-P funding, the ATN has developed a Medication Decision Aid Tool kit to help families and providers with such decisions.

The following Autism Speaks ATN centers worked on this study: Nationwide Children’s Hospital, Columbus, Ohio; Holland Bloorview Kids Rehabilitation Hospital, University of Toronto, Ontario; Cincinnati Children’s Hospital Medical Center, Ohio; University of Colorado and Children’s Hospital Colorado, Denver, Colo.; University of Rochester, N.Y.; Oregon Health & Science University, Portland, Ore.; Columbia University, New York, N.Y.; and Mass General Hospital for Children, Boston, Mass.

ASD and ADHD Symptoms

This study of 3,066 children from the ATN Registry confirmed that, among children with autism, those with higher levels of ADHD symptoms tend to have greater impairment in adaptive skills and poorer health-related quality of life. The researchers looked at impairment in communication, socialization, daily living skills and quality of life in the areas of social, emotional, physical, school and psycho-social functioning.

They recommended physicians look for ADHD symptoms in children with ASD, and consider them in developing treatment plans with parents.

The following Autism Speaks ATN centers worked on the study: Oregon Health & Science University, Portland, Ore., and Nationwide Children’s Hospital, Columbus, Ohio.

Insomnia and Behavior

An estimated 50 to 80 percent of children with ASD have sleep problems. Some research shows – and many parents suspect – that poor sleep worsens behavior problems. This study of 1,193 children aged 4 to 10 years old enrolled in the ATN Registry confirmed that sleep problems are associated with increased problem behavior and emotional issues such as emotional reactivity and anxiety.

The study also found that sleep problems were related to poorer communication and socialization skills.

The following Autism Speaks ATN centers worked on this study: Oregon Health & Science University, Portland, Ore., and University of Colorado, Denver, Colo.

Behavioral Treatments for Insomnia

Past research has suggested that parent-led behavioral interventions can reduce insomnia in children with ASD. But researchers still face the hurdle of how to best educate parents on the use of these methods. This multi-site study found that simply providing parents an informational pamphlet about sleep does not produce significant improvements in children's insomnia. This study was the first stage in the development of parent-training sessions.

The following AIR-P and ATN centers participated in the study: Vanderbilt University Medical Center, Nashville, Tenn.; The Children’s Hospital Colorado, Denver, Colo.; and the University of Toronto/Hospital for Sick Children, Toronto, Canada.

Nutritional Deficiency

Many children with ASD have food aversions and digestive difficulties. But does this lead to nutritional deficiencies? This large, multi-site study analyzed the nutrient intake of 367 children with ASD based on the average requirement for the nutrients. Where possible, researchers compared this to a comparison group that was representative of the general pediatric population.

The researchers found that children with ASD had insufficient intakes of calcium, choline, fiber, magnesium, phosphorus, potassium and vitamins A, D and K. Some of these differences, however, were limited to particular age groups and most were not statistically different from what is seen among children more generally.

Children with ASD had sufficient intake of iron, B6, B12 and folic acid from their diets. The authors concluded that although many children with ASD don’t consume recommended levels of some nutrients, they may not differ greatly from typically developing children.

The following AIR-P and ATN centers participated in the study: Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio; The Children’s Hospital Colorado, Denver, Colo.; University of Rochester, Rochester, N.Y.; University of Pittsburgh, Pittsburgh, Penn.; and the University of Arkansas for Medical Sciences, Little Rock, Ark.

Iron Deficiency

Some previous studies have found iron deficiency to be more common among individuals with autism. This multi-site study of 222 children found that children with autism were no more likely than other children to have iron deficiency. Fewer than 2 percent had iron intake lower than the recommended requirements. Only 1 percent suffered from an iron deficiency. Interestingly, 8 percent of children exhibited low levels of iron as measured in their blood serum. The researchers suggest this deserves further investigation.

The following AIR-P and ATN centers participated in the study: The Children’s Hospital Colorado, Denver, Colo.; University of Rochester, Rochester, N.Y. Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio; University of Arkansas for Medical Sciences, Little Rock, Ark.; and University of Pittsburgh, Pittsburgh, Penn.

Gastrointestinal Problems

This report reviewed the current knowledge around GI issues in individuals with autism and proposed priority areas for further research. These include a review of the prevalence of GI conditions among children with ASD, as well as of the underlying biology, treatments and associated nutritional issues. The report integrates recommendations from an Autism Speaks-supported symposium and workshop on GI in ASD.

Members from the following Autism Speaks ATN centers were authors on this paper: Nationwide Children’s Hospital, Columbus, Ohio; University of Arkansas for Medical Sciences, Little Rock, Ark.; Cincinnati Children’s Hospital, Cincinnati, Ohio.


* Under the Combating Autism Act, the Maternal and Child Health Bureau of the Health Resources and Services Administration funds Autism Speaks ATN to serve as the Autism Intervention Research Network on Physical Health (AIR-P) and conduct research that can improve the health of children and adolescents with autism spectrum disorders (ASD) and other developmental disabilities.

This work and the supplement are supported by cooperative agreement UA3 MC 11054, through the U.S. Dept. of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program with the Mass. General Hospital.