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Friday, July 31, 2015

Education Pleas (Concerning Childhood Trauma)

From LucidWitness
Education Reform Common Sense 

By Daun Kauffman
July 28, 2015

We must not look the other way. 

Millions of injured children whose pleas are not being heard are waiting at the intersection of the “Defending Childhood” Report" from the Department of Justice (DOJ) and Congress’s rewrite of “No Child Left Behind” education (ESEA) legislation.

As one part of defending childhood, the children need a pivotal revision when the adults in the Senate and House work to reconcile their differences on ESEA.

While the children wait for help, other education efforts are ineffective.

The children’s injuries are captured in a term from neurobiology: “childhood trauma”.

Childhood trauma is not “poverty.”

Sometimes ‘trauma’ and ‘poverty’ are misleadingly used interchangeably. Yet, research shows that more than half of those living in poverty do not experience debilitating trauma. Poverty does have a myriad of impacts on learning to be sure, but they are not necessarily traumatic impacts.

Childhood trauma is a response of helplessness, of being overwhelmed, even terrorized, by event(s) some call “Adverse Childhood Experiences” (ACEs): Physical Abuse, Emotional Abuse, Sexual Abuse, Physical Neglect, Emotional Neglect, Single Parent Home (due to separation, divorce, or incarceration), Household Violence, Community Violence, Household Substance Abuse, Household Mental Illness.

The magnitude is staggering. The DOJ Report described it as an “epidemic” back in 2012. Even earlier, back in 1979, the Surgeon General termed it a “national crisis”. In spite of the stunning scope, and life altering power, children are still being hurt today. To them it must seem like a never-ending nightmare.

We do know how to help.

Instead, at this particular intersection today, where children attempt to “achieve” in elementary and secondary school classrooms, the nightmare continues, and can often be worsened.

Wide Scope: All Neighborhoods

Public health research by the CDC reveals devastation that is no respecter of demographics, zip code or socio-economic status. Specifically, researchers found that even in beautiful suburban San Diego, roughly one-fourth of the mostly middle class, mostly white, working folks with medical insurance had experienced 3 or more ACEs!

The wide scope varies in a shocking range from 22% to greater than 45% of children impacted by 3 or more categories of trauma — in many school districts the scope is greater than English Language Learners (ELL) or those with an Individual Education Plan (IEP). In some urban locations (pg. 17 map) the prevalence is greater than ELL and IEP students combined! Each of those impacts is acknowledged and accommodated and funded. Not childhood trauma.

Three or more ACEs is significant because experiencing 3 or more ACEs correlates with doubled risk of depression, adolescent pregnancy, lung disease, and liver disease. It triples the risk of alcoholism and STDs. There is a 5X increase in attempted suicide. It doesn’t just go away. Later, if unaddressed, it results in work absenteeism and lost productivity, measured in billions of dollars. The CDC also found a “strong correlation between the extent of exposure to childhood ACEs and several leading causes of death in adulthood. .  .

Center for Disease Control

Deep Impact: Life Changing

The deep impact of childhood trauma changes children’s physical brains, and impairs their cognitive and social functioning and ultimately their life trajectories.

The neuroscience is compelling. Childhood trauma connects directly to education via its toxic stress effects on development of the physical brain. When children live in a chronic, traumatic state of survival, the unresolved toxic stress damages the function and structure of their still-developing brains. These injuries relate specifically to the prefrontal cortex and academic processes, especially executive function, memory and literacy.

The physiological process also leads kids to distorted perceptions of social cues, which alter their social behaviors in response. Eminently logical defenses in the midst of trauma (hyper-vigilance, dissociation) become ingrained habits, and then destructive, once the threat is extinguished, but the defense pattern remains.

Neurobiology tells us that for the 22% to 45+% of children who are overwhelmed by a state of chronic, or complex trauma, it is physiologically impossible to learn. “Equal Access” requires significant accommodations.

Without the accommodations leading to equal access, children risk having their traumatic experiences re-triggered and further embedded neurobiologically. Instead of repair, more damage.

Frontline Perspective from the Classroom

Schools could be safe and even restorative. Instead, the childhood trauma crisis disrupts all schools at times.

At best, trauma-impacted children are invisible in the data and analyses (Try asking for ACE-adjusted, test data). At worst the data is outright misleading, especially for our understanding of academic results including “standardized test” results. The results are a confused, meaningless “average”, including epidemic numbers of trauma-impacted students in defensive “survival” mode with muted cognition.

Pivotal decisions such as ESEA revisions are then based on these deceptive data.

Preparing individual “Section 504” plans for individual children does not address system-wide needs and is not a practical option, given the scope: millions of students.

A successful education paradigm requires: a) explicit acknowledgement of childhood trauma, b) screening students, c) training teachers and d) creating “safety” across the learning environment.

Screening students can be as simple as using the “ACE score” derived by counselors as part of annual school registration or re-registration. A wide range of other screening measures is available at the National Child Traumatic Stress Network website.

Confronting the learning impacts and the classroom impacts of trauma requires training. The most efficient approach is through teachers, “first responders” in the classroom, who see the childrendaily. Training must be an on-going requirement to: 1.) deliver “safety”, 2.) understand the complexity of teaching trauma-impacted children, and 3.) respond appropriately, including avoiding re-triggering old trauma.

Other crucial investments towards safety include appropriate class-sizes, with limits on trauma-impacted children per classroom. For example, one teacher alone will struggle to be effective aiding one ‘triggered’ student from among the 10 who have 3+ ACEs, within a classroom of 30 kids, total, who are waiting to be taught. Additionally, dedicated appropriate space for children to de-escalate is needed, as well as on-site counselors; counselors, who build on-going relationships with the children and families in the school community.

A Common Sense Revision to ESEA

The intersection of childhood trauma and our educational system is the most accessible entry-point to this horrific national crisis. Virtually all children in the USA traverse some school every weekday.

Traumatized children lose equal access to education without accommodations.

Further, “Childhood trauma” is the missing, macro factor in education which has been blurring our interpretation of results for all micro programs. Meanwhile, we continue pouring billions into education program “buckets” oblivious to the gaping trauma holes in the bottom.

Now, with the ESEA rewrite, we have a choice to ‘Defend Childhood’, to improve access to education and to bring clarity to results, by explicitly confronting childhood trauma. That, in turn, will lead to more equity in education, and better social and financial productivity for our nation.

Ask your Senators and Representatives to add this crucial factor in their revisions to ESEA. Click the ‘OpenCongress’ link below to get their names. Click on individual name and find contact information on right side of screen. Email or call them today, or send them a link to this blog.

Why Schools Over-Discipline Children with Disabilities

From The Atlantic

By Katherine Reynolds Lewis
July 24, 2015

Despite passage of the Americans with Disabilities Act 25 years ago, students with disabilities are still being punished at disproportionate rates. 

A quarter-century ago, on July 26, 1990, Congress passed the Americans with Disabilities Act to give people with disabilities equal access to services like public education. But the rate at which special-needs students are disciplined raises questions about how equal that access truly is. In public schools today, children with disabilities are far more likely than their classmates to be disciplined, removed from the classroom, suspended, and even expelled.

A report by UCLA’s Civil Rights Project released earlier this year found that just over 5 percent of elementary-school children with disabilities were suspended during the 2011-12 school year, more than double the overall suspension rate. Among secondary-school students, 18 percent of kids with disabilities were suspended, versus 10 percent overall. Even more striking, a third of all K-12 children with emotional disabilities—such as anxiety or obsessive compulsive disorder—were suspended at least once, according to Daniel Losen, author of the UCLA report.

These discrepancies amount to what some researchers and advocates call “the discipline gap,” and it potentially matters for tens of millions of K-12 students with conditions such as oppositional defiant disorder, attention-deficit hyperactivity disorder, autism, and depression. These are often kids who can’t sit still, who challenge their teachers, or who struggle with social interactions, among other behavioral challenges—all of which can look like deliberate misbehavior or defiance and, in turn, lead to disciplinary action.

The disparity widens when race is added to the mix: More than one in four black boys and one in five black girls with disabilities will be suspended in a given school year, according to Department of Education data.

“You can’t shun or banish kids with disabilities from public education.”

In addition to suspension, disciplinary policies can include having a child sent to the principal’s office, barred from recess, or verbally scolded. And in some cases—typically ones involving uncooperative students with severe behavioral challenges, such as those with autism, and educators who aren’t trained in proper protocol—kids are pinned down or isolated against their will, a practice known as restraint and seclusion.

A 2014 Propublica investigation of federal data found that restraint and seclusion was used more than 267,000 times nationwide in the 2012 school year, and that three-quarters of the students restrained—often by being tied up or strapped to a chair with materials such as bungee cords and duct tape—had physical, emotional, or intellectual disabilities. Some school officials say these practices are a necessary last resort to protect other students’ and teachers’ safety.

Nonetheless, they have resulted in injuries ranging from bloody noses to broken bones—and at least 20 deaths as of 2009, according to a Government Accountability Office report cited by Propublica. Yet as of last year, only about half of states had laws prohibiting schools from using restraint.

Not only does this disciplinary imbalance appear to run counter to the law, it also seems to challenge some of America’s core values: that all people are born equal and that anyone can succeed with hard work and determination. “You can’t shun or banish kids with disabilities from public education,” Losen said. “It’s so detrimental to our society as a whole, for economic reasons as well as for our understanding of how all sorts of people can be successful. To be persisting in 2015 with policies and practices which we recognized were so undemocratic and contrary to our values as a nation in the ‘60s is very upsetting.”

The White House spotlighted punitive discipline this week, coincidentally coinciding with the ADA’s anniversary, in a gathering of educators, policymakers, and nonprofit leaders. They discussed how each suspension increases a child’s odds of becoming delinquent, abusing substances, connecting with gangs, dropping out, and falling into the “school-to-prison pipeline.” Studies have found that just one suspension makes a kid three times more likely to be involved with juvenile justice in the following year, and more than twice as likely to drop out of school.

These outcomes can come with severe and long-term implications given the connections between dropping out and incarceration, and perhaps even, according to a recent study, premature death. The dire situation has prompted an Obama-administration initiative to improve “school climate” and efforts in some large, urban school districts, such as Los Angeles, to ban suspensions for non-violent offenses.


Why are more than 3 million children suspended nationwide annually, despite scant scientific evidence that removing children from the classroom improves their behavior or learning? Some educators have told me they feel they have no other option when children are misbehaving, regardless of whether their acting out stems from an underlying learning or emotional disability. With strained resources, large classes, and the placement of special-needs children in mainstream classrooms, teachers feel poorly equipped to manage the kids who are especially challenging or uncooperative; some assume that any non-punitive models of school discipline will demand too much money and time. So they fall back on punishment as a reflex.

Cinthia Randolph, an office manager in Redding, California, was shocked when her son’s fifth-grade teacher regularly disciplined him by making him stand outdoors, unsupervised, even in the coldest winter days—simply because, according to Randolph, he would get out of his seat or talk when he wasn’t supposed to. “By November or December I figured out he was spending an average of an hour a day outside the classroom,” Randolph said in a phone interview. “He missed a lot in math.”

But education reformers are promoting new discipline methods that they say nudge even the most-challenging students onto the right path without a school official having to yell, use threats, or resort to suspension. The models vary district to district, but what they tend to have in common is an understanding that educators should look beyond a child’s actions to address the root causes of misbehavior, rather than labeling the student as a problem.

Whether or not a child has a diagnosed disability, the issue may be a learning struggle that makes the student embarrassed or resistant to beginning an assignment. Or it could be an undiagnosed emotional or neurological condition. Discipline can be especially challenging when it comes to preschoolers, who are just becoming accustomed to a school environment and are more likely to have undiagnosed disabilities. The Justice Department in March released the first-ever report on the thousands of children suspended from preschool each year, some of them multiple times.

At the White House event, which featured new discipline guidelines and other resources for educators, a teacher Juan Govea said his Salinas, California, high school cut suspensions by 70 percent through positive behavioral interventions and support,” or PBIS, giving students the kind of acceptance they may have otherwise sought in gangs. In PBIS, which is one of the most studied and validated new discipline models being used in schools, educators are expected to teach kids both appropriate behavior and the consequences for inappropriate behavior, acknowledging when students follow the rules, whether with kudos from a teacher or a reward such as quarterly lunch with the principal.

“It’s about changing the culture; it’s about changing beliefs.”

Broward County School Superintendent Robert Runcie, for example, said his Florida district (which is one of the country’s largest) saw a dramatic drop in student arrests and suspensions after implementing its new disciplinary program. The initiative, he said, focuses on giving students support, including by pairing each student with a caseworker who follows up with the kid over the course of as many as four months after a suspension. More than 90 percent of students didn’t commit a second offense, according to Runcie, who attributed the strides to the district’s move away from punitive discipline. “It’s about changing the culture; it’s about changing beliefs,” Runcie said.

Indeed, “beliefs”—or flawed assumptions about the realities of school discipline—may be the biggest obstacle to disrupting the status quo. Some critics, for instance, have dismissed these more progressive models as impractical and too expensive. But it could be a worthy investment. One Maine school I recently wrote about used a $10,000 grant to implement school-wide collaborative discipline. That’s pennies compared to what it costs annually to incarcerate a young person in the same state: $224,960, according to a Justice Policy Institute report that estimates it costs $8 billion a year to incarcerate young people nationwide.

Meanwhile, some skeptics of non-punitive discipline argue that schools put safety at risk by eschewing harsh punishment. Yet data from a handful of existing programs suggests that these approaches can actually improve safety. After the Meridian Public School District in Mississippi implemented a new positive model, for example, suspensions and expulsions dropped by 50 percent, while 85 percent of students and teachers surveyed said they felt safer, said Vanita Gupta, a U.S. Justice Department civil-rights lawyer, at the White House event.

Schools that fall short of their legal obligation to provide equal access to students could face lawsuits. The Obama administration last January released guidelines detailing how school districts should address educational disparities based on race, which serve as both a resource for schools looking to improve their practices and a basis for legal action on all issues involving unequal educational opportunity.

Some school districts are already taking action. In Syracuse, for instance, a New York state attorney general investigation of unequal suspensions forced the city’s school system to change its discipline practices, under the oversight of an independent monitor. The education department is currently developing similar guidance on disabilities.

And according to Losen, that’s sure to bolster the already-growing interest among government officials, educators, and advocates in closing the gaps. “It’s both race and disability—often it’s black students with disabilities,” he said. “The confluence of race and disability is getting more attention.”

Thursday, July 30, 2015

Schools Warned on Speech Services for Kids with Autism

From DisabilityScoop

By Michelle Diament
July 28, 2015

Federal education officials are reminding schools not to skimp on needed speech and language services for children with autism. 

A child with autism works with a speech-language pathologist.
The U.S. Department of Education is reminding schools that speech services
for kids on the spectrum should not be overlooked.

In a letter to states, officials from the U.S. Department of Education say they’ve heard that an increasing number of kids on the spectrum may not be receiving services from speech-language pathologists at school.

Moreover, such professionals are frequently left out of the evaluation process and are often not present at meetings to determine what services a child should receive under the Individuals with Disabilities Education Act, the department said.

“Some IDEA programs may be including applied behavior analysis (ABA) therapists exclusively without including, or considering input from, speech-language pathologists and other professionals who provide different types of specific therapies that may be appropriate for children with ASD when identifying IDEA services for children with ASD,” wrote Melody Musgrove, director of the Education Department’s Office of Special Education Programs, in the guidance sent this month.

Musgrove said her agency is worried that this issue is impacting students in special education programs serving infants and toddlers as well as K-12 schools.

Under IDEA, schools have an obligation to fully evaluate children with disabilities to assess their specific needs. For young kids, the law requires that the person who conducted the evaluation be included in the team determining what services a child will receive.

Meanwhile, for school-age children, the individualized education program, or IEP, team must include a professional who can “interpret the instructional implications of evaluation results,” the Education Department guidance said.

“We recognize that ABA therapy is just one methodology used to address the needs of children with ASD and remind states and local programs to ensure that decisions regarding services are made based on the unique needs of each individual child with a disability,” Musgrove wrote.

The “Dear Colleague” letter came in response to inquiries from the American Speech-Language-Hearing Association and anecdotal evidence from a handful of states, Education Department officials said.

“We very much appreciate this guidance and believe that it will serve to ensure that children receive the appropriate treatment they deserve based on their individual needs,” said Judith Page, president of the American Speech-Language-Hearing Association.

Elaine Quesinberry, a spokeswoman for the Department of Education, said the letter is not yet posted on the agency’s website, but should be soon.

An Act That Enabled Acceptance

From The New York Times

By Ben Mattlin
July 25, 2015 

Visit me and you’ll see, prominently displayed in my living room, my wedding portrait. My wife looks radiant in a lacy white cloud, standing beside tuxedo’d me in my motorized wheelchair. I’m not propped on a sofa or lounger; my wheelchair is deliberately not cropped out of the photo. It’s literally part of the picture, as it’s always been for us.

We were married almost exactly one year before passage of the Americans With Disabilities Act, the 25th anniversary of which will be celebrated July 26. I’m a lifelong wheelchair user because of a genetic condition called spinal muscular atrophy; my wife is what’s now called “neurotypical,” a fancy term for nondisabled.

But on our wedding day, my disability — and my concomitant lack of basic civil-rights protections — was far from our minds.

Of course, the A.D.A. had nothing to do with marriage equality. What it did do, the government noted, was mandate equal access in employment, public accommodations and government programs for anyone who “has a physical or mental impairment that substantially limits one or more major life activities” or“a history or record of such an impairment” or “is perceived by others as having such an impairment.”

This meant public spaces like stores, theaters and restaurants had to install ramps or electric lifts; many doorways had to be widened; elevators revamped with Braille buttons; and public restrooms altered. Employers, too, had to make “reasonable accommodations” for disabled workers, such as allowing flex time or providing telephone headsets or appropriate computer software.

Before the A.D.A., only public schools and other institutions that received federal funding faced similar requirements. A few states — notably, California — had already established some accessibility standards, but nothing as broad-based as the A.D.A.

Back then, I was only marginally aware that I could be, or even had been, discriminated against. I tended to minimize my disability and its impact on others. My wife and I were probably more concerned about the fact that I was a New York urbanite and she a suburban Californian. We met on summer break from college, talking endlessly during long warm-evening strolls, trying to keep pace with each other though we moved by different means.

Our many differences, I think now, were part of the attraction. To me, her West Coast free-spiritedness was exotic; to her, my determination must have seemed like a force of nature. Also, she told me later, seeing the no-nonsense way my family assisted me at home helped demystify my limitations and needs. The novelty of our relationship felt like an asset, not a liability.

Certainly, the longevity of our union also owes a great debt to honest communication and creative problem solving. The wedding photo is a good example. We put it up only after we grew tired of deliverymen and repairmen and housecleaners asking if she was my sister, or my nurse. Some have even called her a saint for staying with me. It makes us want to scream: “No! The disability didn’t come as a tragic surprise. It was there from day one, a strand in the very fabric of our lives together.”

The picture also comes in handy if my wife isn’t home and some clueless visitor addresses my attendant instead of me, discounting my presence. I’ll try to draw attention to the photo, as a way of saying, “Hey, I live here, and I have a life beyond these wheels.”

When I was in grade school, my parents fought to get me “mainstreamed” into regular classrooms rather than segregated in special education. (Full inclusion, as it’s now known, didn’t become law until I was in eighth grade.) When I started college, at Harvard, it was the first year accessibility was required at universities and similar institutions, per the Rehabilitation Act of 1973 (which took years to be fully implemented).

One dean, I painfully recall, quashed my request for roommates instead of the isolation of a separate dorm room. He said he feared how my disability might affect them. Forget about how this sequestration affected me.

More shocking still is how easily I accepted his judgment. Accommodating the disabled did seem like an impossible imposition then. Indeed, when the A.D.A. passed, one of the biggest fears was what it would cost businesses, even though the law plainly states that accommodations can’t cause “undue hardship” for other patrons or employees or the employer’s bottom line. (The Department of Labor found that modifications for workers with disabilities averaged only $500 each.)

Moreover, businesses that make accessibility modifications can receive tax benefits — a deduction of up to $15,000 a year for removing barriers, as well as a tax credit of up to $5,000 annually for small businesses.

People with disabilities also represent a huge potential market. The United StatesCensus counts nearly one in five Americans as disabled, and we spend $17.3 billion a year on travel alone, according to the Open Doors Organization, a Chicago-based nonprofit.

Looking back, perhaps the most unexpected achievement of the A.D.A. isn’t the wheelchair lifts on buses or the sign-language interpreters at political conventions. It’s that it gave people like me a sense of entitlement, of belonging, of pride.

The A.D.A. is about more than ramps and Braille; it’s about dispelling stereotypes, ensuring parity and fairness, creating opportunities and opening up our society to the full spectrum of types and needs. It’s about accepting, even welcoming, a huge and often marginalized segment of the population.

Our two teenage daughters, both able-bodied, have grown up in a different world. Recently, one came home from her high school’s Diversity Day incensed by a presentation about disabilities. “It was all about being kind to people who face difficulties, which is fine,” she said, “but there was nothing about respect or empowerment or equality!”

Maybe I’ll bring my wedding portrait to the next Diversity Day. Whether we knew it or not at the time, our brand of mixed marriage sends a powerful message.


Ben Mattlin is the author of “Miracle Boy Grows Up: How the Disability Rights Revolution Saved My Sanity.”

Wednesday, July 29, 2015

Parents of Children with Developmental Disabilities and the Power of Choice

From The Doctor's Tablet
The Blog of the Albert Einstein College of Medicine

After 25 years as a developmental pediatrician, I think I have earned the right to claim a favorite developmental milestone.

Certainly, the first smiles of a two- to three-month-old are quite special, the first signs of “life” so to speak. Of course, first steps and then the first words really grab the spotlight, warranting phone calls to Grandma and video footage posted to Facebook.

I am partial, however, to “the point.” Here is the typical scenario: The baby is around 12 months old, gets her parents’ attention with a vocalization such as “eh, eh, eh,” makes eye contact to ensure that she has Mom’s or Dad’s attention and then extends a tiny index finger toward a particular item of desire. Finally, the baby looks back to make sure that Mom or Dad is following this communication.

What I love about “the point” is that it is such a clear communication of a particular choice. There is so much to discern about the emerging personality of this tiny person from this single gesture. And it is the first instance of what will be a lifetime of choosing and making sure her preferences are heard and taken into account, an ability that, in the long run, is integral to feeling respected and achieving a sense of personal well-being.

Choices and Autonomy for Children

I try to offer young children in my office at Albert Einstein College of Medicine’s Children’s Evaluation and Rehabilitation Center reasonable choices. When they enter, I often ask: Do you want to sit in the big chair or the little one? Sit in Mommy’s lap for the exam or on the exam table? Do you want to do a puzzle first or color? Do you want to do math testing first or reading?

These choices between two acceptable things show the child respect, give him or her a sense of autonomy within certain bounds and ease the anxiety of being confronted by a situation that seems otherwise completely uncontrollable.

But it is important to acknowledge that within the framework of choice, there are things that we do not get a choice about. In my work, I meet regularly with parents contending with the challenges of raising children with developmental disabilities. A recurrent theme they express is their feelings of lack of control and choice.

Early on, and intermittently thereafter, parents say they were not given a choice in the matter of having a child with a disability.

What Parents of Children with Developmental Disabilities Can Control

Over the years, I have also found that for most parents, getting back on the parenting track is helped along once they realize that there are things within their control, and they can make choices. I try to shift the discussion in that direction as soon and as often as possible, a few choices at a time.

Early on following the diagnosis, we start with:

What is your greatest concern about your child’s development? That will help us determine which services we should put in place first. Would you prefer services at home or at a center or school for your child? Let’s talk about the different treatment methodologies and their rationales. Does one seem preferable to you? Do you want to have more medical evaluation now or wait until later?

In time, there will be choices about school settings and, eventually, living arrangements. I view my role as that of helping parents make informed choices—and pointing out that there are choices to be made. Once autonomy, practicality and best evidence-based practices are factored in, however, these parents may find their reasonable choices limited.

Not All Choices are of Equal Quality

Recently, I had a mother come in with a seven-year-old referred by his school due to behavioral issues. The mother asked initially if I could refer her to a private-school setting where the initiative and advocacy skills that she saw in her son would be viewed as qualities to be encouraged rather than “problems.”

As the history unfolded, it became evident that the child had exhibited behavioral challenges in two prior school settings. Documentation from the current school described a pattern of aggressive behaviors often directed at other children that required the child to have additional supervision in the class (a shadow). Suddenly, it became clear that ignoring this degree of difficulties was not a reasonable choice for the parent.

I gave that feedback and reframed the discussion to offer the following choices: You can choose to begin with a full multidisciplinary diagnostic evaluation to clarify exactly what the problem is or proceed directly to working on the problematic behaviors with play therapy and social skills, holding off on a diagnostic workup for now.

“These are your choices” is a common refrain in my office. You don’t get a choice of whether your child has Down Syndrome, autism or cerebral palsy, but you do get a choice of how you respond, the priorities you set as a parent and your actions regarding systems and the many people you encounter along the way in your parenting journey.

Why Autism is Different in the Brains of Girls than in Boys

From TIME Magazine

By Alexandra Sifferlin
May 12, 2015

The reasons why girls are less often diagnosed may be both biological and social.

Autism, already a mysterious disorder, is even more puzzling when it comes to gender differences. For every girl diagnosed with autism, four boys are diagnosed, a disparity researchers don’t yet fully understand.

In a new study published in the journal Molecular Autism, researchers from the U.C. Davis MIND Institute tried to figure out a reason why. They looked at 112 boys and 27 girls with autism between ages 3 and 5 years old, as well as a control sample of 53 boys and 29 girls without autism.

Using a process called diffusion-tensor imaging, the researchers looked at the corpus callosum — the largest neural fiber bundle in the brain — in the young kids. Prior research has shown differences in that area of the brain among people with autism.

They found that the organization of these fibers was different in boys compared with girls, especially in the frontal lobes, which play a role in executive functions.

Diffusion-Tensor Image of the Corpus Callosum

“The sample size is still limited, but this work adds to growing body of work suggesting boys and girls with autism have different underlying neuroanatomical differences,” said study author Christine Wu Nordahl, an assistant professor in the U.C. Davis Department of Psychiatry and Behavioral Sciences, in an email.

In other preliminary research presented at the International Meeting for Autism Research, or IMFAR, in Salt Lake City, the study authors showed that when girls and boys with autism are compared with typically developing boys and girls, the behavioral differences between girls with autism and the female controls are greater than the differences among the boys. Nordahl says this suggests that girls can be more severely affected than boys.

study earlier this year by a separate group found notable differences in symptoms between autistic boys and girls, which could be one of the reasons autism in girls sometimes goes unnoticed or is diagnosed late. Girls generally display less obvious behavioral symptoms at a young age compared with boys, the researchers found.

One of the reasons females with autism are less understood than males is that most research studies do not have equal numbers of boys and girls, says Nordahl. “This is not surprising, given that there are so many more males with autism than females,” she says.

“We need to do a better job of trying to recruit females with autism into our studies so that we can fully explore differences between males and females with autism.”

Nordahl says understanding gender differences in autism affects how kids are diagnosed, as well as how they are treated. Understanding what biological differences may be at work can untions forltimately lead to a better understanding of autism and the best interve treatment.

Tuesday, July 28, 2015

Increase in Autism Diagnoses Not an Increase in Autism

From Forbes Magazine

By Emily Willingham
July 23, 2015

"With this recognition, the next step should be a concurrent shift in all of that energy and funding toward resources and support for autistic people.

In news that probably surprised no one who’s been paying attention, a study out of Penn State shows that almost all of the increase in U.S. autism diagnoses over the first decade of this century is the result of reclassification. Specifically, reclassification of children with intellectual disabilities as being autistic, instead.

Almost exactly three years ago, I suggested as much, based on evidence pointing in that direction:

"Several decades after the introduction of autism as a diagnosis, researchers have reported that professionals are still engaging in “diagnostic substitution”: moving people from one diagnostic category, such as “mental retardation” or “language impairment,” to the autism category.

For instance, in one recent study, researchers at UCLA re-examined a population of 489 children who’d been living in Utah in the 1980s. Their first results, reported in 1990, identified 108 kids in the study population who received a classification of “challenged” (what we consider today to be “intellectually disabled”) but who were not diagnosed as autistic. When the investigators went back and applied today’s autism diagnostic criteria to the same 108 children, they found that 64 of them would have received an autism diagnosis today, along with their diagnosis of intellectual disability.

Further evidence of this shift comes from developmental neuropsychologist Dorothy Bishop and colleagues, who completed a study involving re-evaluation of adults who’d been identified in childhood as having a developmental language disorder rather than autism. Using two diagnostic tools to evaluate them today, Bishops’ group found that a fifth of these adults met the criteria for an autism spectrum diagnosis when they previously had not been recognized as autistic."

This latest study, by Santhosh Girirajan and colleagues at Penn, evaluated special education enrollment data for 6.2 million children. Although the numbers remained pretty stable for 11 years, the diagnostic categories shifted around, with the increase in autism diagnoses almost completely balancing a decrease in the numbers of students categorized as intellectually disabled. At least two thirds of the numbers were attributable to this shift.

The numbers also depended on age. The older age groups had a higher rate of shifted diagnoses compared to younger groups, so changing categories explained about 59% of the increase among autistic 8-year-olds but almost 97% of it among 15-year-olds.

As I’ve noted, diagnostic shift is one factor in the recent prevalence increases. The other factor, as research highlights, is increased awareness, which means more diagnostic capture. A Danish study from earlier this year, covering more than 600,000 children, reached similar conclusions. The data triangulate on these factors as playing a huge role in autism diagnosis prevalence–and its variation.

As I wrote last year at

"Variations in awareness may also underlie the differences in numbers from state to state. One reason for this, experts say, is the wide variability in the resources available for diagnosing and serving children in different communities.

For example, New Jersey, which has the highest reported prevalence, is known for providing extensive services for people with autism, notes Rebecca Landa, director of the Center for Autism and Related Disorders at Kennedy Krieger Institute in Baltimore, who was not involved in the study. “There’s a lot of awareness among professionals in that state,” she says.

In contrast, in largely rural states such as Alabama, “we don’t know how much the media is penetrating into small communities; we don’t know what kinds of hardships families in some of these communities are having,” she says.

What’s more, intellectual disability is more common in black and Hispanic children with autism than in white children with the disorder, suggesting that children in these groups with milder symptoms may be going undiagnosed.

That’s a “troubling” possibility, says (Craig) Newschaffer (director of the A.J. Drexel Autism Institute in Philadelphia). “Children with autism and intellectual disability tend to be diagnosed at earlier ages, so this suggests that the gap in diagnosis across ethnic groups may be even wider.”

Research bears out this concern, as I noted this week in a response to a highly problematic article by Robert F. Kennedy Jr. about autism in African-American children.

Much ink, many bits and bytes, and an enormous amount of money and emotional energy have been spent on the search for why autism prevalence has increased so steeply. After a decade of studies, the research continues to close in on diagnostic shift and enhanced awareness as playing a comprehensive, almost all-encompassing role in this trend.

With this recognition, the next step should be a concurrent shift in all of that energy and funding toward resources and support for autistic people.


I am a science writer, editor, and educator with a background in developmental biology, physiology and English literature. Read more about me here and find me (too often) on Twitter.

Predetermination in an IEP (Meeting)


By Doug Goldberg
May 3, 2015

Every year there is one IEP meeting where, no matter how hard I try, I cannot keep my emotions in check. I work as an advocate in one of the largest school districts in the country where, in my opinion, the administrative designees have limited authority to bind the district and to consider the requests of the parents. While this would mean the IEP is invalid, it is very difficult to prove.

I encounter three types of administrative designees in IEP meetings:
  • The tortured soul – This is the administrative designee that really wants to help but is stuck between doing what’s right for the child and keeping her employer happy;
  • The smiley face – This is the administrative designee that remains smiling throughout the entire meeting and is all business. They have a job to do and want to get that job done as quickly and painlessly as possible; and,
  • The intimidator – This is the administrative designee that runs the IEP meeting with an iron fist. Their demeanor is sour and threatening and is meant to limit input from the parents. In my case, this is the rarest of administrator, but at least once a year I meet one.

With most of the year behind us, and too many IEP meetings to count, I finally met with this year’s “Intimidator”. This year’s run-in had to do with predetermination.

Predetermination means that the school makes unilateral decisions prior to an IEP meeting, and then refuses to listen to parental input during the meeting. In my most recent experience, the Intimidator had been directed by the school district to offer a predetermined service.

How do I know this? The Intimidator told us in the meeting!

After which, the parent and I were accused of being non-collaborative with the IEP Team when we would not accept the predetermined offer and tried to add our input into the decision. When we pointed out that you can’t be collaborative if the team decisions are already set in stone, it was suggested by the Intimidator that we end the meeting. Not being easily intimidated, we choose to stay and finish.

So what do you do if the school has already decided, or predetermined, what placement or services will be offered?

Most likely you are going to want to file for due process. Parents cannot force the school to allow you to participate if they adamantly refuse. You should speak to an experienced special education advocate or attorney to determine if you have enough evidence to prove predetermination.

Predetermination can be proven by:
  • The school district making few if any substantial changes reflecting parent input from the draft ones they provide;
  • The school district having a pattern of doing the same IEP categorically, or maybe just at a specific school;
  • The school district failing to identify any substantive reason or data in the prior written notice given the parent for refusing parent requests; or,
  • Recorded admissions that this is the way it is going to be, whether the parent likes it or not.

Due process is an important part of the procedural safeguards, which is why the Individuals with Disabilities Education Act (IDEA) has it in place for parents to protect the rights of their children with disabilities. Don’t be afraid to exercise those rights in the face of predetermination or other violations!

Monday, July 27, 2015

Mental Health Problems for College Students are Increasing

From Healthline News

By Ally Holterman
July 17, 2015

Experts say stress, expectations and social media are putting more stress on today’s college students, creating a ‘mental health crisis.’

When Jason Selby found himself paralyzed at the thought of his usual trek downstairs to get water, he knew something was wrong.

Walking downstairs to get water meant the possibility of tripping and falling.

Missing his alarm in the morning meant failing classes and flunking out of school.

Selby, in fact, experienced massive anxiety about “every little thing in life,” the University of Oregon junior said.

Selby is not the only college student to experience overwhelming, if not paralyzing, anxiety.

Of students surveyed in the Spring 2014 National College Health Assessment, 33 percent reported feeling so depressed within the past 12 months that it was difficult to function, 

Almost 55 percent reported feeling overwhelming anxiety, while 87 percent reported feeling overwhelmed by their responsibilities.

Almost 9 percent seriously considered suicide over the past year.

Gregg Henriques, Ph.D., professor of graduate psychology at James Madison University in Virginia, says these numbers are clear indicators that college students are experiencing what he calls a “mental health crisis.”

According to Henriques, mental health survey results from the mid-1980s indicate that 10 to 15 percent of young adults could have been characterized as having significant mental health problems. Today, he said the number is anywhere from 33 to 40 percent.

“The issue is absolutely clear,” Henriques said. “College students are endorsing on these surveys many more symptoms associated with depression, anxiety, and stress. The data is very clear. There’s a lot more mental stress than there was 23 years ago.”

While depression and anxiety are the most commonly reported mental illnesses, eating disorders, substance abuse, and self-injury are close behind.

The Pressure to Succeed

Selby believes his anxiety was triggered by a multitude of social and academic stresses.

“The pressure to succeed during school is oftentimes overwhelming,” he said. “I know for a fact that students spend a majority of their time worrying about how to add things to their resume, instead of worrying about how to better themselves as individuals.”

As Selby said, college is often the first time in a young person’s life where they have the freedom to make their own choices, a change that can often be daunting.

“College is great. It's the first time in a young person's life where they can experience freedom and make choices that could really impact the rest of their lives,” he said. “At the same time, the fear of the unknown is a ‘reality’ that becomes all too familiar in college.”

"My parents have spent so many thousands of dollars on my education and I would feel awful if I don’t end up successful."
-- Jason Selby, University of Oregon

Henriques agrees all those options can be a double-edged sword.

“We have an economic system that rewards people with certain kinds of talents very well, but it also creates a lot of cracks,” he said. “If you don’t know who you want to be and what you’re going to do and how you’re going to do it, you set the stage for some trouble.”

Selby believes it is this pressure to do well in the future, coupled with financial strain, that contributes to the decrease in students’ mental health.

“My parents have spent so many thousands of dollars on my education and I would feel awful if I don’t end up successful,” he said. “Our economy is not great, so paying for college has become tougher than ever. And to be paying all of this money to get a degree, only to be placed in a very difficult workforce upon graduation, makes things seem bleak for most.”

The growing number of options for young people and lack of a clear “life path” could prompt existential depression or anxiety, Henriques said.

“We certainly see a lot of confusion about students’ identity and how they’re going to contribute to society,” he said. “They don’t really have a clear, easy track into a job or a career or a marriage, and so they sort of stagnate in adolescence. They struggle in finding a purpose.”

Pressure Mounts Before College

For college students with mental health issues, college is often not the first time they’ve experienced overwhelming amounts of stress.

According to Monica, a junior at Barnard College in New York, even before college students experience massive pressure to perform well so they can be admitted to increasingly selective universities.

"I was always a really anxious child, but I definitely think that the pressures of high school, and specifically the college admissions process kick-started a lot of the symptoms."
-- Monica, Barnard College

"I was always a really anxious child, but I definitely think that the pressures of high school, and specifically the college admissions process kick-started a lot of the symptoms," she said. "And as doctors have told me, if you're already anxious or have obsessive tendencies, those tend to come out when you're in a high-pressure environment."

Monica's struggles with mental health began when she was 10 or 11 but continued to be exacerbated by increasingly high academic pressures.

Like Selby, her anxiety resurfaced in college due to fear of failure.

“In the following semesters [of college], when you've settled in and have more time for yourself, you realize you don't have that safety net of 'Oh, this is my first semester of college, it's OK if I mess up,'” she said. “When you lose that safety net, a lot of bad feelings tend to resurface."

Social Media Can Make It Worse

For former University of South Carolina student Margaret Kramer, it was this combination of academic and societal pressure that brought about her eating disorder during high school.

The growing presence of social media and the Internet only contributed to the pressure she felt to be perfect, she said.

“During my eating disorder in high school, I felt like I didn’t fit in anytime I saw my friends’ posts on their fun, carefree lives,” she said. “Those feelings of isolation eventually transformed into fears that my physical appearance needed to ‘improve’ for me to fit in better… Those pictures, as well as other sources I found on the Internet, served as monitors for my extreme dieting and exercising.”

According to Dr. Jason Addison, service chief of the Young Adult Unit at Sheppard Pratt Health System in Maryland, the growing role of social media might be to blame for increased levels of anxiety and depression.

"During my eating disorder in high school, I felt like I didn’t fit in anytime I saw my friends’ posts on their fun, carefree lives."
-- Margaret Kramer, former University of South Carolina student

“Social media has created a more fast-paced world in general, so in that way, I do think there are more stressors than before for patients who might suffer with depression or anxiety,” he said.

Addison also observed that social media could prompt unfavorable comparisons between peers, further exacerbating symptoms of mental illness.

While the Internet may not cause mental illness, Henriques believes social media and technology in general might exacerbate some students’ already-present symptoms, or cause them to rise to the surface.

“Our technology has added many valuable elements, but it’s also led our society to change so fast that our basic, core human needs, or what I call ‘relational values,’ are falling through the cracks,” Henriques said. “There’s a lot more vulnerability to become isolated.”

Nance Roy, Ed.D., clinical director of the Jed Foundation in New York, an organization that works to prevent suicide among college and university students, also noted that social media, combined with preexisting stigma, might play a part in students’ mental well-being.

“When you combine the fact that mental health is still highly stigmatized with the greater exposure we experience on social media, college students may be feeling more pressure to be perfect with less capability of expressing their true emotions,” she said.

However, according to Roy, the growing reports of mental illness might actually bear a positive indication.

“In the past, students [with severe mental illness] couldn’t go to college because their mental health issues were not being well-managed,” Roy said. “But with advances in psychopharmacology, people —students included — are able to function at a much higher level. That has helped a large number of students enter college when they couldn’t previously.”

Roy also said that a wider availability of mental services on campus has de-stigmatized mental illness, leading to students more willing to report their struggles.

“There’s less stigma attached to going for help,” she said. “That could also contribute to the increased numbers [in reporting] that we’re seeing. We still are battling stigma issues, and there’s still quite a large number of students who don’t access services due to stigma, but I think we’re breaking down those barriers.”

What Colleges are Doing about It

However, biases against mental illness are still apparent, even as the numbers of students seeking help from their campus’ counseling centers are growing.

A Center for Collegiate Mental Health study from the 2012-2013 school year found that 48 percent of students had sought counseling for mental health concerns, up from 42 percent during the 2010-2011 school year.

According to Kramer, although the demand for campus counseling might be growing, lack of funding for mental health resources can be an issue for students looking to seek help.

“On our campus, more students are seeking professional help, yet fewer resources are available,” Kramer said. “Our counselors work so hard to provide whatever they can to students, but a lack of funding makes that all the more challenging.”

Roy agreed that a lack of unlimited funds makes meeting every student’s needs difficult. She believes that counseling centers should establish partnerships with local providers in order to help every student get the help they need.

“[The counseling center] should facilitate the connection. (They) can’t just give the student three names and say ‘Here you go,’” Roy said. “The more work schools do with area providers to forge those partnerships, and make sure there’s a good working relationship, the easier it is for students to get really good care in the community.”

More Mental Health Education Needed

Still, many believe more mental health education is needed, and not just from a campus counseling center.

“We’re a society that is pretty ignorant about our feelings,” Henriques said. “We get these simplistic messages that you should be happy, that you shouldn’t feel your negative feelings because they just get everybody down. I think that people don’t know how to cope with their negative feelings, and that creates vicious cycles where people try to block their feelings and don’t know how to process them.”

Monica, who was encouraged by a friend to seek help from the Rosemary Furman Counseling Center at Barnard, agreed that more services outside of a counseling center are necessary.

She noted that Barnard students get eight free counseling sessions per semester, a policy she believes is “pretty progressive,” but that many students could benefit from more connection.

"I think that after those eight free sessions, a lot of students just feel abandoned and don't know what to do,” Monica said. “I know students who are 'saving' their free sessions for midterms or finals. Creating more spaces that are not just run by counselors, but more peer-based situations where students work with each other, would be helpful.”

Selby believes that more classes that teach life skills, in addition to open conversations about mental health, could help combat the fears of the future that he and many of his peers feel on a daily basis.

“Classes on how to speak publicly, what to say in an interview, how to start investing… will counteract all of the negative outside forces that stress college students out,” he said.

To Kramer, more discussions on campus mental health can positively impact students to live more positive, fulfilling lives.

“A university is responsible for creating an environment that fosters student development, as students are at a time in their lives where the behavior they instill in college can become permanent practice once they graduate,” she said.

“A college has the credibility and power to discuss mental health with complete transparency. For the sake of its students, it should.”