Special Education Law Blog

Educating Students with High Functioning ASD: Part 1

The number of children being diagnosed with autism is rapidly increasing.  The incidence rate within the past few years has gone from one child in every 500, to one child in every 150, and now, according to the CDC, the incidence of kids on the autism spectrum is 1 in 88.  It’s beyond the scope of this blog to explain the reason for the escalating number of children being diagnosed, but suffice it to say that the public schools are being called upon more and more frequently to provide services for these children.  Sometimes schools can do a phenomenal job in addressing these children’s needs; sometimes not.  In particular, meeting the needs of those students with higher functioning autism or Asperger’s syndrome can be uniquely challenging because on the surface many of these children look “fine.”  Yet, these children have challenges and need help. 

 School staff can be blinded by the sometimes high intellect or seemingly strong verbal skills some children with either Asperger’s syndrome or high-functioning autism exhibit.  Yet, these kids can be exceedingly puzzling.  Seemingly competent students fall apart when their rigid adherence to routine is interrupted.  Due to sensory overload, the student in AP physics might wind up under the table during a fire drill.  Navigating gym classes, lunchrooms, and playgrounds—confusing even for some children without special needs--can be nightmares for children on the spectrum.  Homework and class work are also stressors for these children.  Some teachers will fault the child on the spectrum who fails to turn in his homework, loses it, or even more frustratingly, simply refuses to do it.  After all, these are bright children who should really “know better.”  Any and all of these scenarios can result in meltdowns for these children.  In worst case scenarios some melt downs are so very badly managed by school staff that the child exits the school in handcuffs escorted by police.  Other children will quietly slip under the radar and simply have their needs overlooked.     

Elopement Behaviors: A Real Danger

Elopement or running away behaviors are certainly at the top of the list of most serious behaviors that must be eliminated from the range of behaviors that a student with special needs experiences in school. I have had several families where elopement has been a frequent and tortuous experience. While some have been injured fortunately none have died. For students with autism there is a great propensity to elope from school supervision and put themselves in danger. According to a study just published in Pediatrics on elopement behaviors, 49% of parents reported that their child had attempted to elope at least once. Of these children, 65% had a “close call” with traffic whereas another 24% were at risk of drowning. Children who elope leave their homes (74%), stores (40%), and schools (29%). Researchers were able to compare the rate at which children with an autism spectrum disorder eloped compared with that of their typical siblings. Between ages 4 and 7 (4 being the developmental age when children can be expected to not wander off), 46% of children with an autism spectrum disorder eloped compared to 11% of their siblings. And between ages 8 and 11, 27% of children on the spectrum wandered compared with just 1% of their siblings.

The Epidemic Effects of Non-Vaccination

As an unfortunate legacy of the now discredited Wakefield “study” in many areas of the country, it has become too common that parents are opting out of vaccinating their youngsters before entering kindergarten. The negative consequences for their children is obvious, but for the school and the community as a whole the results can be quite significant. While some parents are legitimately opting out of vaccinations for medical, religious or philosophical exemptions from vaccinating their children. In the cases where parents have a sincerely held religious belief that prohibits vaccinations, those beliefs need to be respected; that is the small minority of cases. Similarly some children must not be vaccinated, either because they have medical conditions or have had adverse reactions which contraindicate their receiving vaccinations.  These children depend upon what is known as herd immunity to protect them against serious if not lethal cases of contagious but preventable diseases.  To achieve herd immunity, a critical mass of the population must be vaccinated, usually about 95% depending on the illness being vaccinated against.  At this level, disease transmission is contained because it cannot be transferred.  Outbreaks of disease, however, can occur in areas where this threshold is unmet, and those individuals who are not vaccinated; e.g., the young, the immunocompromised, the medically vulnerable, or those who are vaccinated but for whom the vaccine is not working, all become at risk.

 

Restraint and Seclusion, Opposing Viewpoints

The Department of Education recently released the new Civil Rights Data Collection that analyzed equities and disparities in educational opportunities in our nation’s schools during the 2009-2010 school year.  Data were gathered from 72,000 schools, or roughly 85% of students.  Among the data examined was the frequency with which students were secluded or restrained.  Almost 70% of the 38,792 students who were restrained during the past calendar year had disabilities, although students with disabilities comprise only about 12% of the student population.  African-American males, who make up only 21% of the student population with disabilities, represented 44% of those students restrained.  And finally, although approximately half of students with disabilities are male, 70% of students with disabilities who were restrained were male.  According to TASH and other disability groups, the data are sobering.  TASH characterizes the use of restraint and seclusion as an issue of “national significance,” which leads to “traumatic physical and emotional harm, and even death.”  In a press release, Barb Trader, the executive director of TASH, states, “Our students need equitable access to education and protection for their personal safety under the law, and clearly that’s not happening for students with disabilities or those from diverse backgrounds.  It is a national tragedy that any child, especially the most vulnerable, is not safe in school.”  

Changes to the DSM V- A Personal Perspective by: Marilyn Green-Rebnord

Like many parents with a child diagnosed on the autistic spectrum, I’ve been following the controversy over the proposed revisions for the new Diagnostic and Statistical Manual of Mental Disorders (DSM) 5.  Under the proposed new revisions, the categories of autism, PDD-NOS, and Asperger’s syndrome would all be collapsed into the label “Autism Spectrum Disorder.” Criteria for this new diagnosis, which are much more stringent than those used in the previous DSM IV, are causing the autism world to buzz with concern that many higher functioning individuals could “lose” their diagnoses.   Dr. Fred Volkmar of the Yale Child Study Center, who had been a member of the panel involved in the rewriting of the DSM before his resignation, recently reported his results of a study in which he claimed that up to 45% of individuals on the higher ends of the spectrum would no longer be diagnosed with a spectrum disorder. Somewhat speciously, Dr. Volkmar in a New York Times article heralded the “end of the autism epidemic.”

Specifically, Dr. Volkmar and colleagues examined the case records of 1000 children diagnosed with autism in 1993, identified 372 of the highest functioning children, and then applied the proposed DSM 5 criteria to them.  Of these children, about a quarter of those who had been diagnosed with autism, about three quarters who had been diagnosed with Asperger’s, and 85% of those diagnosed with PDD-NOS would not be diagnosed with an autism spectrum disorder under the proposed new criteria.  But members of the American Psychiatric Association (APA) who are involved in the DSM diagnostic changes are crying, “Not so fast” to Dr. Volkmar’s report, which is scheduled to be published this spring.  Dr. Volkmar’s critics, including Dr. Catherine Lord who serves on the DSM panel, are saying that the data are inadequate to re-diagnose the 1993 cohort using the new criteria.  The study is simply not valid.

The iPad and Its Many Uses for Students with Autism

The advent of the iPad and iPod with the proliferation of their accompanying applications offers extraordinary opportunities for students with special needs, including those with autism.  In an Education Week article, Matthew S. Goodwin, the director of clinical research at the Massachusetts Institute of Technology Media Lab, states, “A lot of this [new technology] is preliminary and promising, but it’s not a silver bullet.”  Mr. Goodwin continues to say, “It’s not going to cure autism, but we’re at the precipice of a revolution.” 

Most Schools Not Properly Implementing and Tracking Autism Interventions

Although the Individuals with Disabilities Education Act and No Child Left Behind both mandate that schools must provide research-based interventions for students, it appears that schools are often failing to provide such evidence-based methodologies.  Results from an August 3, 2011 study from Michigan State University of more than 200 school professionals indicate that teachers are failing to use some of the most effective strategies for teaching children with autism.  This is news?  Parents already know that teachers may not be correctly applying the different treatment interventions to their children.  And researchers have also known that there is a research-to-practice gap in autism interventions. 

Autism Series is Another Compelling Reason to Support Public Television

With all the talk about cutting funding and especially for public television and radio, the recent series that Robin McNeil has been hosting on autism is reason enough to support this programming with political support.  He tells part of the story from a first person point of view as the grandfather of a grandson with autism, which makes the series more compelling and poignant. However,  not everyone is thrilled with the coverage and Mr. McNeil's portrayal of people with autism.

For me Sesame Street and all the arts programming should be enough of a justification, but as a special education attorney and parent of a child with special needs, I felt truly affirmed and gratified to see the quality and scope of the discussions on public television.

We live in a sound-bite society but unfortunately autism and issues surrounding special education do not lend themselves to 20 second clips, if the greater society is going to have any real understanding of the issues affecting families, people with autism and with disabilities generally. This series of programs are worth it and should be shown to Congress the next time there is thought of cutting special education funding, funding for autism research and public television which creates a unique forum to delve into comlicated topics. Here is  the link to this programming.

Systematic Study of Autism Treatments shows Minimal Support for the use of Drugs as Treatment

A new study from the journal Pediatrics, the official journal of the American Academy of Pediatrics, indicated that while medication is often used to treat children with autism, “strikingly little evidence” exists to support the approach. That conclusion stems from an analysis of 10 years worth of studies on the use of antipsychotics and other drugs in treating children with autism.“Most of the medical interventions that are currently being applied for children with ASDs have insufficient strength of evidence to evaluate either their potential benefit or adverse effects,” wrote researchers from Vanderbilt University.

The strongest evidence in support of the use of medication for kids who have autism comes from studies funded by pharmaceutical companies who stand to profit, the review found. However, two drugs did stand out in the analysis. Studies suggest that risperidone and aripiprazole, both help to counteract challenging behaviors. But, it must also be noted that the drugs carried significant side effects — such as weight gain and drowsiness — making them useful to only those with the most extreme symptoms. Also, a look at the the use of secretin to treat autism-related gastrointestinal issues suggests the approach is ineffective and does not warrant further research.

This study sheds more light on the companies and medical personnel who are trying to sell a simple solution for the complex problem that is autism. As has been mentioned in prior posts much like the autism spectrum with its many facets and caveats, the treatments that work for any individual child and the ways in which they work are always different. 

Autism Rates Triple in California Since 2002

A just released study shows that from 2002 to the present the rate of autism being diagnosed has tripled in the last 8 years in California. That is a simply shocking statistic that should be on the front page of every newspaper in this country. In a time when many cancer rates have declined, there is stubborn and decided increase in the numbers of children with autism.

We can no longer accept outdated explanations like the now discredited report from Andrew Wakefield that MMR vaccines are causing autism, especially since the vaccines have been reformulated and the rates keep going up. These numbers are real and are not simply a matter of better identification (although some disagree) or labeling children autistic who once were labeled intellectually challenged.  The data shows, and frankly my personal experience over the last 16+ years of practice in the area of special education confirms, an absolute increase in the numbers.  I have asked many OTs and SLPs, who have been treating children for years, and their anecdotal accounts are all the same; the numbers in real terms are way up and at an accelerated rate over the last decade. My anecdotal data, although not scientific, is consistent with the information coming out of California. 

We need to vote our interests and spend even more public funds on autism research. We need to stop wasting time money and energy on nonsense like Wakefield. Subscribing to nonsense, divides parents and only discredits all parents no matter the dissability.

Candidates for office, especially at the top of the ticket, must have well developed and affirmative position papers on autism, special education and other disabilities, if they intend to receive support. My review of the various presidential candidates websites, a few years ago showed that only candidate Hilary Clinton had position papers on autism. We must make decisions based upon data not hype from people like Jenny McCarthy and Andrew Wakefield. We all want a magic bullet to cure and remediate the issues affecting our children, but there is no such thing and no single boogie man (e.g. vaccines) to heap scorn and blame. We need sound and early diagnosics, treatment, planning, teaching and training for school personnel based upon hard data not fraud or conjecture. The work ahead involves heavy lifting that does not lend itself to easy or magic answers like Wakefield.