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Friday, May 31, 2013

Too Early to Learn? Preterm Birth Affects Ability to Solve Complex Cognitive Tasks


May 27, 2013

Being born preterm goes hand -in-hand with an increased risk for neuro-cognitive deficits.

Psychologists from the Ruhr-Universität Bochum and the University of Warwick, UK have investigated the relation between the duration of pregnancy and cognitive abilities under varying work load conditions.

"Cognitive performance deficits of children dramatically increase as cognitive workload of tasks increases and pregnancy duration decreases," says Dr Julia Jäkel from the Ruhr-Universität. In the journal PLOS ONE, the researchers report a new cognitive workload model describing the association between task complexity and incremental performance deficits of preterm children.

Large numbers of preterm born babies will place new demands on education system

About 15 million, i.e., more than ten per cent of all babies worldwide, are born preterm every year; that is before the 37thweek of pregnancy -- and the numbers are rising due to improvements in neonatal medicine and demographic changes. Recent studies suggest that delivery at any gestation other than full term (39 to 41 weeks gestational age) may impair brain development, rendering survivors at risk for adverse neuro-cognitive outcomes.

Considering that 50 per cent of children are born before the 39th week of pregnancy, even small increases in cognitive impairments may have large effects on a population level. "As the total number of children born preterm increases there will be parallel increases in special education needs placing new demands on the education system," Julia Jäkel and her colleagues say.

To date, uncertainties remain regarding the nature and underlying causes of learning difficulties in preterm children. The new cognitive workload model now reconciles previous inconsistent findings on the relationship of gestational age and cognitive performance.

Cognitive Deficits of Children Born Preterm Depend on the Workload of the Task

The research team tested 1326 children, born between weeks 23 and 41 of pregnancy, at an age of eight years. Data were collected as part of the prospective Bavarian Longitudinal Study. The children took part in a range of cognitive tests with varying workload. High workload tasks require the simultaneous integration of different sources of information, thereby placing high demands on the so called working memory. The results: The higher the workload and the shorter the pregnancy duration, the larger were the cognitive performance deficits.

Deficits were disproportionally higher for children born before the 34th week of pregnancy compared with children born after week 33. Being born preterm specifically affected the ability to solve high workload tasks, whereas lower workload tasks were largely unaffected.

Results are relevant for cognitive follow-ups and planning of school lessons

According to the researchers, these results should be taken into account for routine cognitive follow-ups of preterm children as well as for planning school lessons. "New studies suggest that computerized training can improve working memory capacity," Prof Dieter Wolke from Warwick says. "In addition, educational interventions could be developed in which information is not presented simultaneously to preterm children but more slowly and sequentially to promote academic attainment."

Journal Reference

Julia Jaekel, Nicole Baumann, Dieter Wolke. Effects of Gestational Age at Birth on Cognitive Performance: A Function of Cognitive Workload Demands. PLoS ONE, 2013; 8 (5): e65219 DOI: 10.1371/journal.pone.0065219

DSM-5 and RDoC: Shared Interests

From NIMH - The National Institute of Mental Health

By Thomas R. Insel, M.D., Director, NIMH
       Jeffrey Lieberman, M.D., President-Elect, APA

May 13, 2013

"The diagnostic categories represented in the DSM-IV and the International Classification of Diseases-10 (ICD-10, containing virtually identical disorder codes) remain the contemporary consensus standard for how mental disorders are diagnosed and treated."

NIMH and APA have a shared interest in ensuring that patients and health providers have the best available tools and information today to identify and treat mental health issues, while we continue to invest in improving and advancing mental disorder diagnostics for the future.

Today, the American Psychiatric Association's (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM), along with the International Classification of Diseases (ICD) represents the best information currently available for clinical diagnosis of mental disorders.

Patients, families, and insurers can be confident that effective treatments are available, and that the DSM is the key resource for delivering the best available care.

The NIMH has not changed its position on DSM-5.

As NIMH's Research Domain Criteria (RDoC) project website states, "The diagnostic categories represented in the DSM-IV and the International Classification of Diseases-10 (ICD-10, containing virtually identical disorder codes) remain the contemporary consensus standard for how mental disorders are diagnosed and treated."

Yet, what may be realistically feasible today for practitioners is no longer sufficient for researchers. Looking forward, laying the groundwork for a future diagnostic system that more directly reflects modern brain science will require openness to rethinking traditional categories. It is increasingly evident that mental illness will be best understood as disorders of brain structure and function that implicate specific domains of cognition, emotion, and behavior.

This is the focus of the NIMH’s Research Domain Criteria (RDoC) project. RDoC is an attempt to create a new kind of taxonomy for mental disorders by bringing the power of modern research approaches in genetics, neuroscience, and behavioral science to the problem of mental illness.

The evolution of diagnosis does not mean that mental disorders are any less real and serious than other illnesses. Indeed, the science of diagnosis has been evolving throughout medicine. For example, subtypes of cancers once defined by where they occurred in the body are now classified on the basis of their underlying genetic and molecular causes.

All medical disciplines advance through research progress in characterizing diseases and disorders. DSM-5 and RDoC represent complementary, not competing, frameworks for this goal. DSM-5, which will be released May 18, reflects the scientific progress seen since the manual's last edition was published in 1994.

RDoC is a new, comprehensive effort to redefine the research agenda for mental illness. As research findings begin to emerge from the RDoC effort, these findings may be incorporated into future DSM revisions and clinical practice guidelines. But this is a long-term undertaking.

It will take years to fulfill the promise that this research effort represents for transforming the diagnosis and treatment of mental disorders.

By continuing to work together, our two organizations are committed to improving outcomes for people with some of the most disabling disorders in all of medicine.

The DSM-5: Attention, Everyone

From The Economist's Blog "Babbage - Science & Technology"

May 22, 2013

"Express Scripts published its annual report on American drug trends. The company expects broad drug spending for common ailments, such as asthma and hypertension, to fall by 4% over the next three years. However, sales of attention-disorder drugs will jump by 25% over the same period..."

After nearly two decades, the new DSM has arrived. The Diagnostic and Statistical Manual of Mental Disorders is a 947-page guide to ailments of the mind. Published on May 22nd by the American Psychiatric Association (APA), it lists specific symptoms to be attributed to this disorder or that.

The DSM is hugely influential. Its categories guide research and treatment for millions of patients in America and elsewhere. Crucially, it also propels the psychiatry industry—if a disorder is included in the DSM, insurers are more likely to pay for it.

Anything so important is ripe for controversy. This DSM, in particular, has inspired fits. Critics (including, to a degree, this newspaper) yowl that the DSM will lead to over-diagnosis that benefits psychiatrists and drug companies.

The DSM’s authors counter that the guide reflects the full extent of current knowledge, which they admit is imperfect. Furthermore, the DSM is an essential tool to identify patients in need of help.

At the APA’s annual meeting in San Francisco on May 18th, the group’s leaders gathered reporters in a sub-sub-basement to tout exciting changes to the DSM. The manual has new tools to help patients and psychiatrists with assessment, your correspondent and the others were told. Chapters are reorganised to reflect new understanding in genetics and neuroimaging.

But the more prominent debate was at street level, where the polar extremes of the fight were on display. On one side of the street were Scientologists holding signs with various slogans, including “Childhood is not a mental disorder”. On the other side were buses, there to take attendees to and from the meeting, emblazoned with advertisements for Genentech, a pharmaceutical company.

Why is the controversy so important? Eleven percent of American school-age children have been diagnosed with attention-deficit/hyperactivity disorder (ADHD). Astonishingly, one in five boys aged 14-17 have been thus classified. Among those currently labelled as having ADHD, two-thirds are on prescription drugs.

The DSM is likely to lead to even more ADHD diagnoses, particularly for teenagers and adults. The prior DSM, published in 1994, required symptoms to be present before the age of seven. The new version raises that to 12. Adults no longer have to present six symptoms to be diagnosed. The new threshold is five.

This will have a big impact on drug sales. On May 21st Express Scripts, a pharmacy-benefit manager, published its annual report on American drug trends. The company expects broad drug spending for common ailments, such as asthma and hypertension, to fall by 4% over the next three years.

However, sales of attention-disorder drugs will jump by 25% over the same period. The spike is due not to the arrival of expensive new treatment, but to a spike in prescriptions among adults. The use of attention drugs is highest in America's south.

This underscores something most psychiatrists know well. Neither a rise in drug sales nor geographic variation can be explained purely by prevalence of a mental disorder. Rather, these shifts reflect changes in diagnostic practice. Some of the newly diagnosed patients may have been unjustly neglected to date. Many will be the result of more relaxed diagnostic rules.

This is problematic, not least because the over-treatment of some mental disorders coincides with the under-treatment of others. Public services for the mentally ill declined during the recession. Instead of receiving proper treatment, many end up in prison. More than half of America’s prison population has some kind of mental illness.

Thursday, May 30, 2013

A Check-up on (School) Observation Access

From Special Education Today

By Robert Crabtree, Esq.
May 30, 2013

Observation of a student’s program or proposed program by parents or by their expert evaluators or consultants is a critical step in many cases for parents to make informed decisions about their child’s special educational services.

In addition, an observation is a necessary ingredient of almost any case at the Bureau of Special Education Appeals (“BSEA”), as hearing officers will often discount a witness’s opinion about a district’s program when that witness has not observed the program about which s/he is testifying.

In light of these considerations, it is disheartening that school districts so frequently throw unreasonable (and illegal) conditions and delays into the paths of parents and their experts who seek to observe a program. Examples include requiring criminal record checks, despite the fact that an observer will be accompanied by a school employee and not alone with students at any point; attempts to require that an observer provide a copy of her notes following the observation; long delays (often with phone calls and emails unreturned) in communications about scheduling; arbitrary limits on the amount of time that can be spent observing and/or the classes and activities that may be observed; last minute cancellations or postponements; scheduling unusual and unrepresentative activities (e.g., showing a movie or administering an exam) for the time an observer is at the program; and so on.

All of these sorts of tactics play havoc with the experts, whose availability is typically quite limited, and with parents who must negotiate time away from work to observe a program.

In 2008, special education advocates succeeded in procuring an amendment to Massachusetts’ special education law that clearly establishes a right for parents to observe and/or to have their expert evaluators and consultants observe a student’s current and/or proposed program. The amendment added the following language to the special education statute at
M.G.L. c. 71B, §3:

"To insure that parents can participate fully and effectively with school personnel in the consideration and development of appropriate educational programs for their child, a school committee shall, upon request by a parent, provide timely access to parents and parent-designated independent evaluators and educational consultants for observations of a child’s current program and of any program proposed for the child, including both academic and non-academic components of any such program. Parents and their designees shall be afforded access of sufficient duration and extent to enable them to evaluate a child’s performance in a current program and the ability of a proposed program to enable such child to make effective progress. School committees shall impose no conditions or restrictions on such observations except those necessary to ensure the safety of children in a program or the integrity of the program while under observation or to protect children in the program from disclosure by an observer of confidential and personally identifiable information in the event such information is obtained in the course of an observation by a parent or a designee."

The MA Department of Elementary and Secondary Education quickly issued an excellent advisory memorandum, which explains the districts’ responsibility to cooperate with parents and their experts in providing access for observations.

Nearly five years following the enactment of the observation access law, school-imposed barriers continue to plague parents and their experts. We are glad to be able to report, however, that when the BSEA is asked to help remove barriers and conditions that do not comply with the statute, the chances are good that orders will issue.

A ruling by Hearing Officer William Crane in early May (In Re: Mansfield Public Schools, BSEA #1307030) supported a parental request to have their expert observe a full, continuous day of the program for a child whose disabilities affected social communication skills, caused anxiety, and likely caused fluctuation over the course of the school day.

The hearing officer rejected the district’s arguments based on its alleged need to have a particular school employee, whose other obligations would preclude a full day commitment to the task, accompany the observer. The district had offered to have the observation broken up over two or more days, but the hearing officer was persuaded that the observation should occur in a single day so that the observer could place any behavior s/he might observe in the context of the full day’s events.

He found that none of the district’s proposed bases for denying a full day’s observation were contemplated in the statute, which allows only three types of limitation on observations (to protect the safety of students, the integrity of the program, or the confidentiality of information).

The bureaucratic resistance to access for observations is not likely to disappear any time soon and the strategies to delay or block those observations are many. Be aware of the legal requirements and with some persistence parents and their experts should be able to break through those barriers.

Readers should also check Dan Heffernan’s earlier post on this site,
Take a Look For Yourself, urging parents to take advantage of the right to observe with several excellent suggestions for navigating the process.


Robert Crabtree is a partner in the Special Education & Disability Rights practice group at Kotin, Crabtree & Strong, LLP in Boston, Massachusetts. He was also a principal author of MA Chapter 766, the state's landmark special education law.

By Chloe Rothschild
September 12, 2012

I have always known I was different from others; even when I was a little girl I knew that I had special needs. I knew that I went to therapy, I knew that I had a special education teacher at school who helped me, and I knew that some things were harder for me than they were for other people. I also knew that I had an IEP (Individual Education Plan). I have always been very self-aware, even when I was young.

Autism Was Not An Unspoken Word

I remember going to doctors to get a diagnosis. My parents were always honest with me when talking about autism or any of my other special needs. Autism or special needs were never words that should not be spoken.

I think the fact that none of my differences were hidden from me, resulted in me never thinking I was weird. In hindsight I think that this is one of the reasons that helped me to be so accepting of my differences.

Differences Caused Some Frustrations

Granted, even though I knew I was different, sometimes my differences caused me some frustrations. For example, when I was in elementary school, I wished that a certain group of girls would play with me on the playground. I did not understand why it was so hard for me to approach these girls, to know what to say, and when to say it.

Luckily, my teachers, therapists, school counselor, and parents were very helpful in teaching me social skills, and helping me make friends. But I really enjoyed spending time and playing with my friends who also had disabilities at recess. I was often not interested in playing or being friends with my “typical” peers. I feel that this is okay; I played with the kids that I was comfortable with, and I had fun doing it.

Years later, these are still my friends, who have been by my side supporting me for more than 10 years.

The Beginning of Self-Advocacy

As I got older, I started attending my own IEPs. I first attended when I was in the fourth or fifth grade, and have continued to be involved in them. When I was in middle school I would sit and look at my old IEPs from earlier years and was amazed at how much progress I had made.

When I was in middle school I began to learn how to self-advocate for myself and my needs even more. If I needed a certain accommodation and it wasn’t offered to me, I had to ask for it. Sometimes this was not easy, but it was worth it.

Improving Self-Advocacy by Improving Communication

When I was in the eighth grade I discovered that writing my thoughts and ideas was easier than speaking. I wondered why this was the case and was sometimes frustrated by the fact that I could explain how I felt or what I needed so well in writing, but struggled when speaking. I am so glad I discovered the fact that writing was easier for me, as it has been a great tool to me in the years since then. Once I started high school I was very good at self advocating for myself, for the most part.

The Birth of a Self-Advocate!

In summer, 2011, I experienced a situation where people who were supposed to understand me and autism did not seem to. They were not able to help me when I needed it most. Weeks after this experience, my therapist gave me an assignment to write about the things I wish people understood about me. This is the question that started it all!

When I read my response to this question, I was quite amazed that I wrote them. This is what led me to the decision to become a self advocate, so that I could help teach others about autism from my perspective.

Then I began to become more interested in reading books about autism. I also began to connect with older adults with autism online. This helped me to realize that I was not alone and that life was not hopeless. After my negative experience in the summer of 2011, I was starting to lose hope, but by talking with others who have autism, I began to see that there was hope.

I realized that I wanted to write and speak about autism. I began the journey to finding opportunities to do this.

Tips for Parents and Teachers
  • Encourage your child or student to use their strengths.
  • Do not hide your child’s diagnosis from them.
  • Allow them to be involved in the IEP process.
  • If your child asks questions about their disability, answer them honestly.
  • Do not stop your child from learning more about their disability, if they desire to do so.
  • Make sure your child/student knows that they are not alone; you are there to help them along the way.
  • Provide your child with age appropriate books about their disability. Some recommended books for kids are:

Sensory Processing Disorder

Ellie Bean the Drama Queen: A Children’s Book about Sensory Processing Disorder by Jennie Harding

Squirmy Wormy: How I Learned to Help Myself by Lynda Farrington Wilson

Autism/Asperger's Syndrome

The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents) by Elizabeth Verdick and Elizabeth Reeve

This Is Asperger Syndrome by Elisa Gagnon and Brenda Smith Myles

...and so many others!
About Chloe Rothschild
Chloe is a 19-year-old young adult who has PDD-NOS, an autism spectrum disorder. She enjoys using her talent and love for writing to raise awareness about autism. She blogs at Finding My Way With Autism.

Funding Agency Shifts Focus Away from Diagnostic Groups

From - The Simons Foundation Autism Research Initiative

By Sarah DeWeerdt
May 27, 2013

Bench vs. bedside: Clinicians and researchers may need different ways to ask questions about psychiatric disorders.

The 18 May release of the DSM-5, the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders, was upstaged by a controversial announcement three weeks earlier.

In a
blog post on 29 April, National Institute of Mental Health (NIMH) director Thomas Insel announced that institute would move away from funding research proposals that hew closely to DSM-5 diagnoses such as autism spectrum disorder and schizophrenia.

“Going forward, we will be supporting research projects that look across current categories — or sub-divide current categories — to begin to develop a better system,” Insel wrote.

Insel proposed that researchers instead use Research Domain Criteria (RDoC), an NIMH creation that outlines biological traits and variables that scientists can use to study psychiatric disorders.

The post, which went live just before the
International Meeting for Autism Research in San Sebastián, Spain, instantly became the talk of the autism community.

Insel’s words struck many readers as an attack on the
already-controversial document.

“I think it was an unfortunate choice of words to say the DSM lacks validity,” says Sarah Spence, pediatric neurologist at Boston Children’s Hospital, who was previously a staff scientist at the NIMH. Some people feared the post would put insurance coverage for mental disorders in jeopardy, Spence notes. “That would be a catastrophe."

In the aftermath of the reaction to his post, Insel clarified that RDoC is a research tool, not intended for clinical use. On 13 May, he issued a
joint statement with the president-elect of the American Psychiatric Association, which publishes the DSM, emphasizing that the two projects are complementary.

“We’re trying to create the framework of science that could inform the next DSM,” Insel told

Honest Proposals

Many autism researchers say Insel’s proposal reflects the way they already approach the disorder — by, for example, looking at subgroups of people with autism, or probing genes that play a role in multiple neurodevelopmental conditions.

“It will make me write more honest grant proposals,” says
David Ledbetter, chief scientific officer at Geisinger Health System in Danville, Pennsylvania. Ledbetter is involved in studies of a chromosomal region, 16p11.2, that is associated with autism, intellectual disability and other developmental delays.

Ledbetter’s work suggests that
neither genes nor symptoms adhere to existing labels of neurodevelopmental disorders. “To have to recruit subjects and conduct research according to fixed categories is limiting,” he says. “We’re liberated from the DSM.”

Insel says he hopes not to overthrow the DSM but to improve it.

“To be really concrete about this, we’re trying to get biomarkers,” he says. The biomarkers might identify subsets of people currently labeled as having autism and become the basis for a new diagnostic scheme that relies on the biology underlying psychiatric disorders rather than on their overt symptoms.

Insel says he was motivated to write his post after hearing from researchers who had submitted grant proposals based on RDoC criteria and had them rejected.

He says outside experts who review grant applications may not have known about RDoC, even though it was launched in 2009. “Finally people have heard about RDoC.”

For now, RDoC encourages scientists to use genetics, brain imaging and other research methods to investigate five social, cognitive and other ‘domains’ of function. Within these domains are traits such as fear and anxiety, working memory, language and sleep-wake cycles, for example.

Some experts say this list leaves out important aspects of autism.

“There isn’t anything in there about change over time and the fact that people learn things,” says Catherine Lord, director of the Center for Autism and the Developing Brain in New York City and a member of the DSM-5’s neurodevelopmental disorders working group. “If it’s going to be useful to real people with real problems, we have to have some kind of developmental context.”

Dimensional Details

Lord says she and her colleagues have developed ways to analyze scores from the Autism Diagnostic Observation Schedule (ADOS), the widely used diagnostic test that Lord developed. “We’ve been trying very hard to get dimensional data from our categorical measures for the last few years,” she says.

In practice, however, it is difficult to measure only one dimension at a time in autism: Some tests reflect both cognition and social behavior, for example. “Very seldom do you have a pure dimension,” Lord says.

It may also be premature to expect biology to replace symptom-based diagnostic categories, cautions Spence.

“We have to be a little bit careful about saying that the biology is going to tell us everything,” Spence says. For example, she notes, people with fragile X syndrome all have the same genetic abnormality, but widely varying clinical characteristics.

Others are more optimistic, and say the DSM-5 and RDoC will both serve valuable roles.

“I think [the DSM and RDoC] have a lot to offer each other, as opposed to thinking we’re going to abandon one for the other,” says
Elliott Sherr, associate professor of neurology at the University of California, San Francisco School of Medicine.

Sherr’s own research already reflects some of the principles outlined in RDoC. He studies people who carry deletions or duplications of 16p11.2 and those with callosal agenesis, a congenital defect in which the bundles of nerve fibers that connect the two hemispheres of the brain do not form.

Some individuals who have one of these conditions meet the criteria for autism. “You can still be studying autism even if everybody [in the study] doesn’t have it,” Sherr says.

Less strict adherence to DSM categories might help in the clinic as well, he adds. For example, people with callosal agenesis often
struggle with social interactions, and might benefit from autism interventions even if they don’t meet diagnostic criteria for the disorder.

Before that can happen, however, RDoC will need to provide a framework that can be used in the clinic, Sherr says. “You just have to make sure that the patients aren’t lost in the shuffle.”

Wednesday, May 29, 2013

Impulsive, Hyperactive and Emotional: ADHD in Preschool


By Sunny Aldrich, Professional ADHD Coach
September 27, 2012

Don’t be fooled by the name. Attention Deficit Hyperactivity Disorder (ADHD) is more about self-regulation than attention. Kids with ADHD often struggle to regulate emotions, activity level and impulses in addition to attention, and may even have difficulty regulating the amount of information their brains process.

Most of us can just “tune out” background noise or ignore the sight of birds flying overhead. What would it be like if you couldn’t “filter” or regulate your senses? One time you might notice nothing and another time notice everything all at once, with no ability to choose between the two. Now imagine you’re only three years old: everything is new and not much of this stuff makes sense to begin with.

I’m sure you can see how things become very frustrating, very quickly. It’s no fun for the three-year-old either.

What Can You Do?

When your child’s difficult behavior threatens his emotional or physical well-being and your sanity, it’s time to consider some non-traditional parenting strategies. First, take a deep breath. My son is almost nine. They do live through it, although at times you might be afraid YOU won’t!

Second, pay close attention to all the factors that you DO have control over and start keeping a log of what seems to trigger behavior, as well as what seems to improve it. Don’t be afraid to get creative!

Here are some things that made a difference for my kids:

Food Additives and Diet

Food coloring is a huge trigger in my house, resulting in an inevitable storm of hyperactivity, anger and defiance. It’s not uncommon for my son to become physically violent. Recent studies (Deans, 2010) have linked behavior problems in certain allergy-prone ADHD children with food additives. Switching to organic foods can eliminate chemicals as a factor.

Sugar: I don’t care what the general wisdom says about sugar, if my son has it he’s obnoxious and out of control. So far, no team of researchers has volunteered to come live at my house and help regulate my children’s behavior. Until they do, I make the call.

Allergies: The most important thing to understand about allergies is that there are two types of allergic responses: acute, life-threatening (IgA) allergic responses and “sensitivities” or low-level (IgG) responses. Lowering allergen levels and allergy immunotherapy shots have helped both of my older children with attention, memory and hyperactivity. Common food sensitivities can include eggs, dairy, wheat/gluten and soy and reducing or eliminating them can make a difference for some kids.

Sleep: All of my children have had sleep disturbances from a VERY young age. Sleep deprivation exacerbates “isms” such as attention and hyperactivity and can cause developmental issues. Routine can help, but in some cases not enough. Our pediatrician recommended melatonin, so talk to yours if sleep is an issue. Don’t overlook the fact that YOU need some sleep too!

Exercise: This seems obvious, but a really good physical outlet is helpful. Small, toddler-safe trampolines (like the mini ones with handles on them) or balance boards can help. It’s the biochemical equivalent of a dose of short-acting Ritalin, and wears off in about the same amount of time (2-4 hours.)

Limiting or Manipulating Sensory Input: Loud noises, audio/visual over-stimulation, rough textures, strong flavors… I could write pages and pages. The short answer is to pay close attention and observe your child carefully.

Sight: My son still seeks out quiet/dark/closed in places such as cardboard boxes, closets etc. where the environment is less stimulating. Both of my kids are calmer and more focused in less-cluttered, well-organized surroundings.

Sound: Ear plugs or other hearing protection devices, such as the ones used for target shooting, can help block general “noise” and have a calming effect.

Weight: A weighted vest can feel like a “hug” to some kids and can help calm them. They’re available online, are relatively inexpensive and some are even designed to look more like regular clothing.

Vibration: As parents of infants who fall asleep during car rides have discovered, vibration is soothing to some children! Sitting with their back against a washing machine or dish washer can have a calming effect. Vibrating pillows or massage pads can also be used.

Fabrics: My son hates the seams in his socks, tags, anything even mildly irritating, and quite frankly, so do I. Life is too short to wear itchy, scratchy clothing.

When to Get Help

Does your son’s defiance or impulsivity put him at risk for physical injury? Does your daughter’s constant physical activity or frequent tantrums put stress on you or the rest of the family? Don’t ignore your instincts!

If your child’s “difficult” behaviors seem more pronounced than other kids their age, find a medical professional willing to listen and offer other interventions or medication options.

Lastly, keep an open mind. It may not make sense to you that your child wants to sleep inside a cardboard box or that they find loud toilets scary, but trust me – they have their reasons!


Guest Post: The DSM-V and Special Education

From Special Education Today
via NESCA News & Notes

By Robert Crabtree, Esq.
May 24, 2013

"To the extent that IDEA’s or state law’s definitions of disabilities are broader than those that appear in DSM-V, a district’s attempt to insist that a student meet DSM-V criteria would have to give way as illegally narrowing eligibility for special education."

As has been widely publicized and discussed, the American Psychiatric Association (APA) has recently issued a revised version of the Diagnostic and Statistical Manual of Mental Disorders (DSM), a book sometimes termed a “bible” for mental health professionals. The manual might better be called a dictionary, as it aims to provide a vocabulary established by general (though not unanimous) agreement among mental health professionals so that they can productively discuss how best to help people who exhibit disabling emotional and/or intellectual conditions.

The diagnostic labels and the lists of elements for each that appear in the manual are the product of votes taken at general conclaves held, often decades apart, by the APA after recommendations are made by committees assigned to explore current research and experience around specified types of emotional and/or intellectual dysfunction. As its authors would be the first to admit, the DSM’s resulting diagnostic categories and constituent elements are far from perfect and, while intended as a tool to help clinicians, should be used with skepticism and with a heavy dose of direct and personal clinical judgment.

The introduction to the current version of the manual, the DSM-IV, cautions users (as the new DSM-V will presumably also do) that they should treat the diagnostic criteria and definitions of disorders as “guidelines to be informed by clinical judgment … not to be used in a cookbook fashion.”

Clinicians are advised that their observation and clinical judgment may warrant the application of a diagnosis even if the subject’s symptoms do not meet all of the DSM criteria, “as long as the symptoms that are present are persistent and severe.” Because the purpose of the manual is to provide a reliable common language for professionals engaged in treatment and research, however, the user is cautioned not to veer too far from its listed criteria lest they become meaningless.

Although the DSM is meant to serve as a clinical tool, it has come to be used by insurers and by private and public institutional providers – often including public school systems – as a gateway to benefits. When fiscally-strapped providers use the DSM as a tool for triage, lock-step denials of access to services inevitably result. Compounding the problem is the lack of clinical qualifications of many who mind those gates and who are all too ready to deny services based on an individual’s failure to fit perfectly under a diagnostic label.

The new updated manual, DSM-V, is the first to be issued since 1994. It will include a number of uncontroversial changes meant to update the categorization of disorders based on research and usage in the last two decades. An example of such a change is the use of the term “intellectual disability” in place of “mental retardation.” In connection with that change, the manual will call for diagnoses to be based less on IQ scores and more on clinical assessment of an individual’s functional abilities – a welcome change to those who advocate for services for persons with cognitive impairments.

The new version will also include some controversial changes that have caused anxiety and concern among those who perceive that they will be directly affected. Chief among those changes is the deletion from the DSM of categories associated with autism that previously carried their own lists of diagnostic criteria: Asperger’s Disorder; Childhood Disintegrative Disorder; and Pervasive Developmental Disorder, NOS. The sense of those who support these changes is that the common elements among these disorders warrant using only one diagnostic category, Autism Spectrum Disorder, with diagnosticians indicating a level of severity once they determine the presence of the elements that support the diagnosis.

Many parents, advocates, and affected individuals, however, have voiced concern that the removal of these specific categories of autism from the DSM will result in some individuals’ losing the diagnostic definition altogether and, along with that, losing the services for which the diagnosis may have previously qualified them.

The DSM-V attempts to ease these concerns some have raised by advising that “individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.”

The DSM-V also includes a new category, Social Communication Disorder (“SCD”), meant to catch some who may fall outside of the Autism Spectrum Disorder category for lack of one or another element of the definition. An
explanatory memo from the APA states that ASD must first be ruled out and that “SCD is characterized by a persistent difficulty with verbal and nonverbal communication that cannot be explained by low cognitive ability. Symptoms include difficulty in the acquisition and use of spoken and written language as well as problems with inappropriate responses in conversation. The disorder limits effective communication, social relationships, academic achievement, or occupational performance. Symptoms must be present in early childhood even if they are not recognized until later when speech, language, or communication demands exceed abilities.” (One commentator has suggested that this new category might be called “autism lite.”)

Since it will take time for research to build data specifically focused on such a new category, and particular service strategies will need to be borrowed from previous experience with other comparable disorders to address the needs of those who may shift, for example, from PDD-NOS to SCD, some wonder whether the latter will simply become a label without reliable treatment options for the foreseeable future.

Another change will be the introduction of Disruptive Mood Dysregulation Disorder (“DMDD”), aimed at sidestepping the controversial use of Bipolar Disorder as a pediatric diagnosis. (See a description of this new category
here.) Again, the newness of the diagnostic category means that service strategies will not have been clearly defined, though much research and experience based on older comparable categories of disorder will likely be relevant. For a thoughtful discussion of the reasoning behind the creation of this new category and of some concerns about its effects, see this article.

For parents and advocates in the field of special education, we can expect that any change in the words used to define a disability will bring with it arguments over interpretation, which, in an adversarial system – i.e., where parents seek services that districts would rather not provide – will lead to delays and/or denial of services. (As a school-side special education attorney once wryly commented: “Every time a word is changed in the statutes and regulations we practice under, it means at least a hundred hours of billable time.” The same thing might be said of changes in diagnostic categories.)

Many issues will likely arise for parents and advocates as new DSM diagnostic categories and their ramifications are discussed in the process of evaluating children and developing IEPs (or not) for them. We expect to return to this subject in later posts as the process unfolds. At the outset of this transition, though, we would suggest that participants keep in mind the very real difference between DSM-V diagnostic categories and the definitions of “disabilities” in the state and federal statutes that govern our work.

The criteria for eligibility for special education and/or related services, as set forth in IDEA and in Massachusetts’ (and probably most states’) special education laws and regulations, do not refer to the DSM. In fact, those definitions are generally broader than what appears in the DSM, and accordingly should provide greater access to services.

For example, Massachusetts’ regulations define autism (at
603 CMR 28.02(7)(a)) as a “developmental disability significantly affecting verbal and nonverbal communication and social interaction,” and refer to the federal definition of autism found at 34 C.F.R. 300.8(c)(1) for elaboration. That federal definition states: “Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences.”

An examination of the
new DSM-V criteria for an autism spectrum diagnosis reveals a long list of component elements. Parents and advocates should keep firmly in mind, however, that those elements are not essential to a child’s meeting the definition of autism under state and federal special education law. (This is not to say that some school districts will not insist on an official DSM-V diagnosis of autism spectrum disorder before finding a student eligible for special education, but rather that there may be serious grounds on which to challenge such a denial, based on the actual words of IDEA and state law.)

Likewise, while many different diagnoses found in the DSM-V to describe emotional disorders are based on lists of elements specific to each, the definition of “emotional impairment” under IDEA and Massachusetts law is broader.

Put another way, being diagnosed with a mental illness under a DSM-V category would probably be sufficient to satisfy the definition of “emotional impairment,” but would not be necessary if the student otherwise fits the following definition from both federal and state regulations: “the student exhibits one or more of the following characteristics over a long period of time and to a marked degree that adversely affects educational performance: an inability to learn that cannot be explained by intellectual, sensory, or health factors; an inability to build or maintain satisfactory interpersonal relationships with peers and teachers; inappropriate types of behavior or feelings under normal circumstances; a general pervasive mood of unhappiness or depression; or a tendency to develop physical symptoms or fears associated with personal or school problems.”
603 CMR 28.02(7)(f) (referencing 34 C.F.R. 300.8(c)(4)).

To the extent that IDEA’s or state law’s definitions of disabilities are broader than those that appear in DSM-V, a district’s attempt to insist that a student meet DSM-V criteria would have to give way as illegally narrowing eligibility for special education.

There will be more to come on the subject of DSM-V as a factor in special education process. Watch this space!


Robert Crabtree is a partner in the Special Education & Disability Rights practice group at Kotin, Crabtree & Strong, LLP in Boston, Massachusetts. He was also a principal author of MA Chapter 766, the state's landmark special education law, which served as the template for the federal IDEA statute. 

Tuesday, May 28, 2013

Live DSM-5 Discussion

From - The Simons Foundation Autism Research Initiative

By Greg Boustead
May 22, 2013

We invite you to join us for a live 'virtual roundtable' on the criteria for autism in the newly published DSM-5, the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders. The talk is scheduled for Wednesday, May 29, at 3:00pm Eastern.

Our panelists are
Thomas Insel, director of the National Institute of Mental Health; Catherine Lord, DSM-5 working group member and director of the Center for Autism and the Developing Brain; and Helen Tager-Flusberg, director of the Research on Autism and Developmental Disorders program at Boston University.
Register for the session now »

The DSM-5's publication last week and a preemptive announcement from the National Institute of Mental Health that it will be directing research away from DSM categories should make for a lively and informative debate.

The panelists will explore the new guidelines' impact on autism diagnosis as well as on research. Listeners will have a chance to ask the panelists questions during the discussion.

At the event time, call 866-740-1260 (access code: 2979382) to listen to the live discussion. To follow the live chat and submit your own questions, log in to using the access code 2979382.

Or submit your questions now, either by posting them in the comments section below, or by emailing them to

You can register for the session
here. To add the event to your Outlook or iCal Calendar, click here. To add it to your Google Calendar, click here.
Catherine Lord, Director, Center for Autism and the Developing Brain
Thomas Insel, Director, National Institute of Mental Health

Helen Tager-Flusberg, Director, Research on Autism & Developmental Disorders, Boston University
The panel will be moderated by science journalist Sarah DeWeerdt, a regular contributor to

Empathizing with Sensory and Movement Differences: Moving toward Sensitive Understanding of Autism

From Frontiers in Integrative Neuroscience

By Steven K. Kapp
May 23, 2013

The autism diagnosis requires deficits in social interaction and communication, yet neither occurs in isolation. This brief literature-based analysis provides evidence that other factors are involved in autistic people's atypical social communication. The brain is a complicated system where regions serve multiple, general, and overlapping roles. Sensorimotor and broad cognitive processes underlie both neurotypicals' and autistics' social cognition and behavior. Sensory strengths sometimes underlie autistic people's difficulties, especially in dynamic contexts that require multimodal integration.

Social abilities and behaviors occur between people in social contexts, and autistic and neurotypical people share mutual difficulties in understanding one another. This paper challenges attempts to reduce autism to social deficits, and suggests the need for better interpersonal and societal understanding of and support for autistic people.

Integrative Neuroscience

Increasing evidence supports how brain networks integrate complex information, including the contribution of sensorimotor areas to abilities and behaviors considered social in autistic and neurotypical people. A recent study that sought to identify the components of autistic people's “social brain” identified a sensorimotor circuit as one of the subsystems (Gotts et al., 2012). Typically, as people learn and make sense of things, different parts of the brain are well-connected and function in sync and rhythm with one another, with activity oscillating back and forth (Wang, 2010; Uhlhass and Singer, 2012).

Such wiring contributes to the rhythm and synchrony of typical social interaction, but these processes happen atypically in autistic people (for example, greater or less connectivity in certain areas compared with neurotypicals; Mostofsky and Ewen, 2011; Gomot and Wicker, 2012;Uddin et al., in press).

Similarly, the cerebellum (Fatemi et al., 2012), basal ganglia (Qiu et al., 2010; Prat and Stocco, 2012), and sensorimotor cortex (Hamilton, 2013) brain structures known to assist motor control also connect to other regions and appear to play important roles in timing, speech production (Bouchard et al., 2013), the back-and-forth conversation (Scott et al., 2009) that is often problematic for autistic people.

A brain region called the insula exemplifies the complexity of challenges facing autistic people. Once considered to play a limited and isolated role (its name means “island”; Craig, 2010), the insula connects to diverse brain regions (Kurth et al., 2010; Deen et al., 2011). It is a key part of a brain network that integrates external sensory stimuli with one's own bodily, emotional, and mental states (Uddin and Menon, 2009), and which may best distinguish autism (Uddin et al., in press). Regarding the insula's role in subserving interoception (awareness of internal bodily stimuli; Craig, 2009), many autistic people are hypersensitive to pain (Nader et al., 2004) and can even have a highly accurate sense of their own heartbeat (Cascio et al., 2013).

Interoception and the insula also contribute to a variety of social functions (Di Martino et al., 2009; Herbert and Pollatos, 2012), such as sharing attention with others (Mundy et al., 2010), and awareness of (Silani et al., 2008; Bird et al., 2010; Herbert et al., 2011) and verbal expression (Saxbe et al., 2012) of one's own emotions. Most autistic people have difficulties with interpreting and expressing their own emotions, but those more able to do so are less likely to have challenges with recognizing others' emotions (Bird et al., 2010), interpreting their facial expressions (Cook et al., 2013), or with making eye contact (Bird et al., 2011).

The insula also plays a role in unpleasant situations (Wicker et al., 2003;Wright et al., 2004; Jabbi et al., 2008). It contributes to autistic people's tendency for hypersensitivity to unpleasant textures, which—alongside hyposensitivity to other textures (Foss-Feig et al., 2012)—relates mostly to social impairment (Cascio et al., 2012b). Moreover, the insula is involved in the processing of norm violations (Sanfey et al., 2003), and autistic people show enhanced activation of the insula when rules are broken, which can create a false appearance (including in the insula) of reduced concern about social exclusion (Bolling et al., 2011; Masten et al., 2011).

Indeed, the insula is involved in cognitive flexibility, including attention switching (Menon and Uddin, 2010) and tolerance for uncertainty, as well as understanding others' emotions (Singer et al., 2009). These are related, because people cannot mind-read, but rather approximate others' emotions and thoughts through probabilistic inference based on experience (Gopnik, 2011; Gopnik and Wellman, 2012).

Mind-Body Interaction

Rather than relying on discrete social domains, interpreting other people's thoughts and emotions from their behavior or communication requires more general processes (Gernsbacher and Frymiare, 2005; Wilkinson and Ball, 2012). Typically, reading nonverbal cues involves sensorimotor and basic attentional processes, and happens relativelyautomatically and unconsciously (Pineda and Hecht, 2009; Frith and Frith, 2012). Autistic people tend to have significant challenges with all these abilities (Ben-Sasson et al., 2009; Kapp et al., 2011; Donnellan et al., 2013). Such challenges with reading body language relate to general trouble with movement; slowing down nonverbal cues significantly improves accuracy of processing them (Gepner and Féron, 2009). Autistics often demonstrate competence when processing the same stimulus when static, but difficulties when in motion (Hanley et al., 2012; Weisberg et al., 2012).

For example, many autistic people have oculomotor control (eye movement) problems, which challenge joint attention and language development (Mundy et al., 2009; Gliga et al., 2012; Kelly et al., 2013). In particular, many autistic people's pupils reflect intense activity in the nervous system, which challenges quick, coordinated, spontaneous attention (Anderson et al., 2012). Faced with these difficulties, most autistic people learn to rely on more advanced active reasoning skills to infer body language (Ahmed and Miller, 2011; Vivanti et al., 2011; Senju, 2013).

Like sensory processing (Aglioti and Pazzaglia, 2011) and movement (Riley et al., 2012) in neurotypicals, sensorimotor differences in autistic people underlie various behaviors impacting social functioning. For example, sensory hypersensitivity and integration difficulties often lead to social withdrawal from overload (Reynolds et al., 2011; Brock et al., 2012), while the slow responsiveness from sensory hyposensitivity distinctively contributes to autism-related impairment (Ben-Sasson et al., 2009; Brock et al., 2012).

Furthermore, challenges with body posture and gestures, listed as impairment in social interaction in the autism diagnosis (APA, 2000), relate to respective difficulties with postural control (from poor balance; Travers et al., 2012) and performing skilled movements (related to dyspraxia: impairment in motor planning; Dziuk et al., 2007). Similarly, atypical social distance (personal space; Frazier et al., 2012) may stem from problems sensing and orienting to one's body in space (Blanche et al., 2012).

Moreover, as in the general population (Niedenthal, 2007; Barsalou, 2008), emotions and language in autistic people are grounded in the body. When autistics have challenges with social emotions, these draw from embodied emotion dysregulation more broadly (Winkielman et al., 2009; Mazefsky et al., 2012). Likewise, when autistics have challenges understanding figurative language and other aspects of what often gets labeled as pragmatics (language applied to social contexts), this stems from general challenges with receptive (understanding) language (Gernsbacher and Pripas-Kapit, 2012).

While language is acquired through social contexts, speech requires the coordination of many muscles; most autistics have atypical speech (whether functional or not), including unusual prosody (rate, rhythm, volume, pitch, and tone; Eigsti et al., 2011).

Although proponents of social deficit theories of autism often emphasize poor autobiographical memory, this originates in part from the sense of smell and broader memory problems. Certain odors automatically induce memories and social contact in neurotypicals (Larsson and Willander, 2009), but the effect may tend to be limited to more familiar events and people in autistics (Parma et al., 2013).

Indeed, a few studies have linked taste-smell processing difficulties in autistics with greater communication and behavioral challenges (Hilton et al., 2010; Lane et al., 2011). Moreover, autistics tend to have challenges with not only past- but also future-oriented memory (prospective memory: remembering to carry out intentions); this contributes to planning, organization, multitasking, and social cognitive challenges (Rajendran et al., 2011; Lind and Williams, 2012;Williams et al., 2012).

Complex Differences

Any comprehensive theory of autism requires recognizing the complex nature of differences, including strengths and impairments that sometimes arise from them, as illustrated in the visual and auditory modalities. Visual strengths relate positively to language and other communication challenges (Atkinson, 2009; Joseph et al., 2009; Hubbard et al., 2012; Ohta et al., 2012); most autistics considered “untestable” can demonstrate visuospatial skills (Courchesne et al., 2012). Autistics tend to have enhanced ability, and natural orientation, to directly process visual stimuli (Happé and Frith, 2006; Mottron et al., 2006; Simmons et al., 2009), including the abilities to search for objects amid distractors, see patterns, and notice subtle changes in scenery (Simmons et al., 2009).

Yet, for some, this hypersensitivity means pain (Kleinhans et al., 2010) or distraction (Doherty-Sneddon et al., 2012) from eye contract or bright lights (Fan et al., 2009), and aversion to change related to heightened recognition of subtle changes in the environment (Cléry et al., 2013a, b).

Similarly, autistic people's auditory strengths relate positively to their language challenges (Bonnel et al., 2010). Autistics tend to have greater perception of singular auditory stimuli such as absolute (“perfect”) pitch (Happé and Frith, 2006; Mottron et al., 2006; O'Connor, 2012), but hypersensitivity can mean greater pain from loud noise (Egelhoff and Lane, 2013), impairment in filtering out background noise (Lane et al., 2010;Egelhoff and Lane, 2013), and difficulty learning spoken words (Norbury et al., 2010).

Because of general challenges with audiovisual integration when watching and listening to speech (Woynaroski et al., 2013), autistics tend to look at the mouth, which provides audiovisual synchrony (lip motion with speech sound; Klin et al., 2009) that helps autistics and typically developing infants develop language skills (Norbury et al., 2009; Young et al., 2009;Falck-Ytter et al., 2010; Lewkowicz and Hansen-Tift, 2012).

Indeed, the greatest differences often stem from simultaneous multisensory processing and integration of information more broadly. For example, related to visual-motor integration challenges, many autistics learn new movements (Haswell et al., 2009; Izawa et al., 2012) and facial expressions (Wright et al., 2008) by focusing on feedback from the body more than visual observation; autistics with especially low body awareness may struggle greatly with motor skills and communication (Freitag et al., 2007; Blanche et al., 2012; Linkenauger et al., 2012). Neurotypicals unconsciously integrate information, and their prior experiences and expectations shape their perception of surroundings (Schroeder et al., 2010)

Autistics are also affected by this phenomenon, but more independent processing grounded in details of the environment can translate to more realistic perception (Brock, 2012; Cascio et al., 2012a;Pellicano and Burr, 2012). Yet for many this also means overwhelm and confusion in everyday settings that require dynamic online (in the moment) integration (Dinstein et al., 2012), and lack of automatic attention (but generally not inability to understand) the “big picture” or context, which contributes to communication challenges (Happé and Frith, 2006).

Person-Environment (Social) Interaction

Despite their inclusion in the autism diagnosis as an internal problem, communication, reciprocity, and relationships happen between people and must happen both ways to function (Donnellan et al., 2013). According to the concept of synchrony, effective communication happens not only between regions of a person's brain, but between communication partners, whose brains and bodies in turn will typically reflect mutual engagement (Hari et al., 2013). While people typically show neural synchrony when engaged in joint activity, autistic people and neurotypical communication partners both have challenges connecting with one another, demonstrated neurologically and behaviorally (Tanabe et al., 2012; Schilbach et al., in press).

In spite of the listing of impairment in peer relationships within the autism diagnosis (APA, 2000), peers regularly bully and reject autistics, and are generally more likely to do so if the autistic person gets upset (Rieffe et al., 2012) or withdraws (Humphrey and Symes, 2010). Such stressful experiences cause and exacerbate co-occurring mental and physical conditions (Kohane et al., 2012), and present greater challenges for coping with autism.

Supporting autistic people requires flexibility between autistics and communication partners (Muskett et al., 2010). For example, autistic children tend to build more skills when their parents understand and accept them (Kapp et al., 2013; Oppenheim and Koren-Karie, unpublished). Such sensitivity requires learning why someone has particular behavior and working with the person (Amos, 2013); even challenging behavior may represent an adaptive form of compensatory communication (Damico and Nelson, 2005). Parents who understand the reasons for their autistic children's behaviors and learn to speak their child's language help their child gain skills in the parent's language, especially for more language delayed or impaired children, by becoming in sync with their child (Kasari et al., 2008; Perryman et al., 2012; Haebig et al., 2013; Siller et al., 2013).

Now that the autism field has begun to intensively study sensory-movement differences, they have become better understood, with potential to spur change. Autistics' challenges with sensory processing, motor skills, emotion regulation, and executive functioning often mask the extent or expression of their social understanding or interest in neurotypical contexts. Neurotypicals do not naturally recognize the full reasons for sensory-movement differences, and their centrality to communication differences, because they involve areas they process intuitively. Critically, as scientific evidence on the presence and importance of autistic people's sensory-movement differences mounts, it increasingly reflects autistic people's lived experiences (Chamak et al., 2008; Davidson and Henderson, 2010; Robledo et al., 2012).

What society does with this knowledge will test everyone's sensitivity and understanding.


Steven K. Kapp is a professor in the Human Development and Psychology Division, Graduate School of Education and Information Studies, University of California Los Angeles, Los Angeles, CA, USA.