“Is Inclusive Education Right for My Child with Disabilities?” by Edward Fenske, MAT, EdS

This week, we’re honored to feature an article by Edward Fenske, MAT, EdS, the former executive director of the Princeton Child Development Institute, who shares his critique on the U.S. Departments of Health and Human Services and Education’s joint statement on inclusive education for all children with disabilities. Ed’s extensive experience in delivering intervention to children with autism, support services to their families, and training and supervision to professional staff spans 39 years. His published works address home programming, language development, and early intervention.

Is Inclusive Education Right for My Child with Disabilities?
by Edward Fenske, MAT, EdS
Princeton Child Development Institute

On September 14, 2015 the U.S. Department of Health and Human Services and the U.S. Department of Education issued a joint policy statement recommending inclusive education for all children with disabilities begin during early childhood and continue into schools, places of employment, and the broader community. The policy includes numerous assertions about the educational benefits and legal foundation of inclusion and a lengthy list of supporting evidence. This paper examines some of these assertions, the supporting evidence, and comments on the departments’ recommendation.

Assertion: Children with disabilities, including those with the most significant disabilities and the highest needs, can make significant developmental and learning progress in inclusive settings.

Supporting Evidence: Green, Terry, & Gallagher (2014). This study compared the acquisition of literacy skills by 77 pre-school students with disabilities in inclusive classrooms with 77 non-disabled classmates. Skill acquisition was assessed using pre/post intervention scores on the Peabody Picture Vocabulary Test, Third Edition (Dunn & Dunn, 1997) and the Phonological Awareness Literacy Screening Prekindergarten (Invernizzi, Sullivan, Meier, & Swank, 2004). The results found that children with disabilities made significant gains that mirrored the progress of their typical classmates, although the achievement gap between the two groups remained. Participants had a variety of diagnoses (e.g., developmental delays, autism, pervasive developmental disorder-not otherwise specified, speech and language impairments, cognitive impairments, and Down syndrome). There were several requirements for participation in this study that would appear to severely limit conclusions. Participants with disabilities were functioning at social, cognitive, behavioral and linguistic levels to the extent that their Individual Education Program (IEP) teams recommended participation in language and literacy instruction in the general education classroom with typical peers-an indication that these skills were considered prerequisite to meaningful inclusion.

A further restriction for participation was that only data from children who were able to complete the tasks according to standardized administrative format were included in the study. It is therefore unclear whether all students with disabilities in these inclusive preschool classes made significant developmental and learning progress. The authors suggest that had the lower achieving students received explicit, small group or individual instruction, the achievement gap between typically developing students and children with disabilities may have been narrowed. We can therefore conclude that regular instruction provided in the inclusive preschool classes in this study was not sufficient for all students with disabilities. Furthermore, because the results were not separated by disability, it is not possible to determine whether there was a significant difference in learning across disabilities.

Assertion: Some studies have shown that children with disabilities who were in inclusive settings experienced greater cognitive and communication development than children with disabilities who were in separate settings, with this being particularly apparent among children with more significant disabilities.

Supporting Evidence: Rafferty, Piscitelli, & Boettcher (2003). This study described the progress in acquiring language skills and social competency of 96 preschoolers with disabilities attending a community-based program. Sixty-eight participants received instruction in inclusive classes and 28 attended segregated special education classes. Progress was assessed using pretest and posttest scores from the Preschool Language Scale-3 (Zimmerman, Steiner, & Pond, 1992) and the Social Skills Rating System (SSRS)–Teacher Version (Gresham & Elliott, 1990). Level of disability (i.e., “severely disabled” or “not severe”) was determined by scores on the Wechsler Preschool and Primary Scale of Intelligence (WPPSI-R), but the authors did not provide any information about the participants’ specific clinical diagnoses. Posttest scores were comparable for “not severe” students in both class types. Children with “severe” disabilities in inclusive classes had higher posttest scores in language development and social skills than their peers in segregated classes, but had higher rates of problem behavior. The extent to which problem behavior interfered with learning for both typical children and those with disabilities was not addressed. Problem behavior, such as tantrums, aggression, stereotypy, self-injury, property destruction and defiance; is displayed by some children with disabilities. These behaviors have very different implications for preschool-aged children than for older children. In this writer’s experience, severe problem behavior is extremely resistant to change when not successfully treated during preschool years and may ultimately result in more restrictive academic, vocational and residential placement during adolescence and adulthood. The significance of any academic gains by children with disabilities in inclusive settings should be carefully weighed against the long-term implications of unchecked maladaptive behavior.

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“10 Things Autism Awareness SHOULD Be About” by David Celiberti, PhD, BCBA-D

We’re so thrilled to be kicking off Autism Awareness Month with a special guest article from the Executive Director of the Association for Science in Autism Treatment (ASAT) David Celiberti, PhD, BCBA-D, who shares with us 10 compelling ways in which we should approach “autism awareness.” David has also provided a wealth of information and resources for parents and professionals to utilize in finding the best treatments out there, seeking out reliable research and asking good questions, helping individuals with ASD find a place in the workforce, and much more. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

Children Holding Up Puzzles for Autism

10 Things Autism Awareness SHOULD Be About
by David Celiberti, PhD, BCBA-D

April is Autism Awareness Month. The blue puzzle pieces will appear on thousands of Facebook pages and billboards, and the media will give greater attention to, and information about autism. Further awareness is a wonderful thing, as detection and diagnosis are necessary first steps to accessing help in the form of treatment, information, and support. With well over 400 treatments from which to choose, parents of children with autism need guidance, tools, and accurate information to make the best possible choices for their children: choices that will undoubtedly have a profound impact on both their current quality of life and their children’s future.

Clearly, autism spectrum disorder (ASD) is no longer the rare diagnosis that it once was. With the incidence of one in 68 children, and one in 42 boys, our own families, neighbors, and co-workers are all touched by autism. In fact, the sheer numbers have heightened awareness of autism in and of themselves. This awareness is essential: it promotes early detection, and with early detection, we hope for a relatively clearer course toward effective treatment and better outcomes. Sadly, however, the early detection of autism alone does not always mean a seamless path to intervention. Furthermore, families whose children are diagnosed with autism are still not able to expeditiously access the most effective science-based treatments available. Instead, families often have to sort through over 400 pseudo-scientific treatments until they arrive at the most effective and research-proven intervention in addressing the complex disorder of autism. We must do better!

“Autism Awareness” should be about more than just detection and diagnosis. It has always been ASAT’s hope that the conversation around autism awareness would be broadened to focus upon the obstacles that separate individuals with autism from effective, science-based intervention and distract their families, caregivers, and teachers from accurate information about effective autism intervention. Below are 10 ideas about what Autism Awareness should be about, along with ways that the Association for Science in Autism Treatment (ASAT) can assist families and providers in navigating the complex maze of autism treatment options.

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Autism treatment is a multi-million dollar industry. For the majority of the 400+ available interventions, science is overlooked in favor of pseudoscience, and they are marketed with heart-wrenching testimonials, anecdotes and video montages, and often bolstered with poorly crafted and misleading surveys. Many boast inaccurate and even outrageous claims that are touted as evidence of effectiveness. Aggressive marketing of these so-called “therapies” and “cures” is absolutely overwhelming and it drowns out accurate information for parents who are desperate to help their children.

For most other medical conditions, a provider who disregards a proven intervention in favor of using a “fringe” treatment could be sued for malpractice! Such safeguards do not widely exist for autism treatment. We do no favors for children with autism, their families, and those charged with providing effective services when we not only ignore quackery, but allow it to proliferate by failing to counter baseless claims. Families deserve better. Individuals with autism deserve better. Visit our website to learn more about the scientific support behind various autism treatments, the relevance of peer-reviewed research, the pitfalls of testimonials, as well as many other articles related to becoming a more savvy consumer. Please also see our review of Sabrina Freeman’s book, A Complete Guide to Autism Treatments.

As adults, voters, consumers, providers, and parents, choice underlies all of our decisions. Decision-making power comes with tremendous responsibility. There is a myriad of stakeholders whose decisions have profound implications for children and adults with autism – not just parents, but siblings, teachers, treatment providers, administrators, program coordinators, and taxpayers.

  • Scientists need to take responsibility in making their findings about an intervention’s effectiveness clear, unambiguous, and unexaggerated. Efforts should be taken to promote replication.
  • Administrators and program leaders need to take responsibility in identifying internal and external training opportunities that further their staff’s competence with evidence-based practice. Additionally, they should make sure their staff receives the support needed to sustain these efforts and to continually engage in data-based decision making when both selecting and monitoring interventions. They must be savvy and selective in their selections of trainings for their staff and not fall prey to gimmicks, splashy sales pitches or fads.
  • Providers need to select procedures that are based on published research, adhere to their discipline’s ethical guidelines about evidence-based practices, and maintain a commitment to ensuring that parents have truly been given the opportunity to provide informed consent. For example, if there is no scientific evidence to support an intervention that one is using, then it is an ethical obligation of the professional to inform parents of this lack of evidence. Please see Principle #1 and #2 of the Ethical Code for Occupational Therapists, Section 2.04 of the Ethical Principles of Psychologists and Code of Conduct, and Section 2 of the Guidelines for Responsible Conduct for Behavior Analysts.
  • Parents must continue to exercise caution in sorting through autism treatment options to make the best possible choice for their children, particularly since many providers do not make the path to effective treatment clear and simple.

There are far too many individuals with autism who do not have access to effective treatment, are receiving ineffective treatment, or are subjected to treatments that are, in fact, dangerous. Every minute of ineffective intervention is one less minute spent accessing effective intervention. Every dollar spent on an intervention that does not work depletes resources available for interventions that do work. For questions to ask to make sure that the individual with autism in your life is receiving science-based treatment, please see our article on questions to ask marketers and read more about the following three phases of inquiry about particular interventions and their associated questions and considerations in The Road Less Traveled: Charting a Clear Course for Autism Treatment:

  • Phase I: Exploring the viability and appropriateness of a particular treatment approach.
  • Phase II: Assessing the appropriateness of an intervention under the supervision of a specific service provider for a specific individual with autism.
  • Phase III: Monitoring the implementation of the treatment and evaluating effectiveness.

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As we know, not all information on the Internet is reliable and accurate. You have probably heard the term, caveat emptor (“Let the buyer beware”). Consumers must also practice caveat lector (“Let the reader beware”).

Often Internet information is deemed equivalent in relevance, importance, and validity to research published in peer-reviewed scientific journals, but it is not. Testimonials and uncontrolled studies from so-called researchers can lead parents astray and be a tremendous source of distraction. Parents of newly-diagnosed children may be particularly vulnerable. Know the red flags to avoid and learn how to evaluate research by visiting our website. Our library of articles highlights scientific concepts and methods as they relate to potential autism interventions, with the goal of providing families, educators and clinicians with the information they need in order to be savvy consumers of marketed treatment products and therapies.

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Tip of the Week: How to Avoid Over-Pathologizing Behaviors in Kids with Autism

A diagnosis of autism can be very challenging for a child and for his or her family. But one of the most difficult aspects of autism is that it is not clear cut what behaviors are related to autism, and what behaviors are related to just being a kid. Every child tantrums sometimes. Every child talks back sometimes. Every child engages in dangerous behavior sometimes.

When I look back on my own childhood, I think of several behaviors I exhibited: in third grade I cut my own hair while my teacher’s back was turned, in fourth grade I got mad at my brother and threw an alarm clock at him, and in seventh grade I loved Agatha Christie books so much that I frequently refused to go outside and sat in my room reading by myself for hours on end. If I had autism, any one of these behaviors may have been pathologized instead of being considered as just a part of growing up.

So how do you parse through all the behaviors your learner is exhibiting and figure out which ones you should actually be worried about? Here are a few questions to ask yourself in determining behaviors to address:

  1. Is the behavior dangerous?
  2. How often and for how long does your learner engage in the behavior?
  3. How different is this behavior from the learner’s same-age peers? For example, does your three year old cry for a couple minutes when told that she can’t have her favorite toy, or does she cry for two hours and refuse to engage with any other toys for the rest of the day?
  4. How is this behavior interfering with the learner’s ability to learn?
  5. How is this behavior interfering with the learner’s ability to engage with peers and family members?
  6. Is the behavior related to a skill? For example, pacing the room and flapping your arms is typically not related to a skill, but building Lego models can be related to a skill. If it is related to a skill, think about ways to provide opportunities for expanding that skill.

The answers to these questions should be able to inform the decisions that you make in intervening with behaviors. And we should remember that above all else, kids with autism are still just kids.

WRITTEN BY SAM BLANCO, MSED, BCBA

Sam is an ABA provider for students ages 3-12 in NYC. Working in education for ten years with students with Autism Spectrum Disorders and other developmental delays, Sam has developed strategies for achieving a multitude of academic, behavior, and social goals. Sam is currently pursuing her PhD in Applied Behavior Analysis at Endicott College.

“Cooperating with Dental Exams” – Strategies for Parents, by Jennifer Hieminga, MEd, BCBA

This month’s featured article from ASAT is by the Associate Director of the New Haven Learning Centre in Toronto Jennifer Hieminga, MEd, BCBA, on several research-based strategies for parents to encourage cooperative behavior in their children with ASD during routine dental visits. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

My daughter with autism was very resistant during her first dental visit. Are there any steps we can take to help her tolerate a dental exam? We were actively involved in her home-based early intervention program for the last two years and have a working knowledge of ABA. Our daughter’s program is overseen by a board certified behavior analyst.

Answered by Jennifer Hieminga, MEd, BCBA
Associate Director, New Haven Learning Centre, Toronto, Canada

Boy Dental VisitFor many individuals with autism, routine appointments such as medical, dental and haircuts can be extremely difficult to tolerate. There are many factors that may contribute to this intolerance such as novel environments, novel adults, novel or aversive sounds, bright lights, foreign tastes, painful sensations, sitting for long periods of time and physical touch. As a result, many children with autism display noncompliant or avoidant behavior in response to these stimuli or events. Fortunately, there is a growing body of research published in peer-reviewed journals describing effective strategies to target dental toleration. Several different behavior interventions and programs have been used to increase an individual’s tolerance or proximity to an avoided stimulus or event, such as a dental exam. For example, the use of escape and reward contingent on cooperative dental behavior was shown to be effective for some individuals (Allen & Stokes, 1987; Allen, Loiben, Aleen, & Stanley, 1992). Non-contingent escape, in which the child was given periodic breaks during the dental exam, was also effective in decreasing disruptive behavior (O’Callaghan, Allen, Powell, & Salama, 2006). Other strategies such as using distraction and rewards (Stark et al., 1989), providing opportunities for the individuals to participate in the dental exam (Conyers et al., 2004), and employing systematic desensitization procedures (Altabet, 2002) have been shown to be effective. Most recently, Cuvo, Godard, Huckfeldt, and Demattei (2010) used a combination of interventions including, priming DVD, escape extinction, stimulus fading, distracting stimuli, etc. The board certified behavior analyst overseeing your daughter’s program is likely familiar with these procedures.

Clinical practice suggests that dental exams can indeed be modified to teach children with autism component skills related to dental exams (Blitz & Britton, 2010). However, a major challenge to implementing such skill-acquisition programs is the reduced opportunities to actually target these skills. One highly effective way to address this is to create a mock dental exam scenario in your home, as it provides opportunities to teach and practice the skills consistently and frequently. These scenarios should emulate, as best as possible, an actual dental office (e.g., similar tools, sounds, light, reclining chair), making it easier for the skills mastered in the mock teaching scenario to generalize to the dental office exam later on.

Developing a “Cooperates with a Dental Exam” Program
Following is a detailed example of the components involved with creating and implementing a “Cooperates with a dental exam” program.

  1. Speak to your family dentist to identify all the components of the exam with which your child will be required to participate.
  2. Based on the dentist’s input, develop a detailed task analysis outlining each step of the dental exam. See sample task analysis provided in the next section below.
  3. Collect necessary materials required for the exam. Many of these items may be obtained or borrowed from your dentist and may include:
    • Reclining chair (e.g., lazy boy)
    • Dental bib
    • Flouride foam dental plates
    • Electric Toothbrush with round head (to ensure polishing)
    • Dental mask
    • Dental mirror
    • Plastic gloves
    • X-ray plates
    • Flossing pics
  4. Take baseline data to determine your child’s ability to cooperate with each step of the exam and to identify skills that need to be taught. For example, baseline data may indicate there is a skill deficit with tolerating novel noises at the dentist and not with the exam itself. In this situation, a specific program for tolerating novel sounds found in the dental office should be introduced. It cannot be overstated that an intervention to address this area would need to be individualized. However, for the purpose of this reply it will be assumed that your daughter presents with difficulty in all, or the majority of the steps involved in a dental exam.
  5. Lastly, before starting the program, establish highly-potent reinforcers which your daughter will access for correctly responding within this program, and collect the items that you will need to teach this skill.

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“Underwater Basket Weaving Therapy for Autism: Don’t Laugh! It Could Happen…” by David Celiberti, PhD, BCBA-D & Denise Lorelli, MS

This month’s featured article from the Association for Science in Autism Treatment (ASAT) is by Executive Director David Celiberti, PhD, BCBA-D and Denise Lorelli, MS on the abundance of so-called “therapies” available for children with autism, why some fall trap to these “therapies,” and how to assess what therapy is right, and most importantly, effective in the long run. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!


Underwater Basket Weaving Therapy for Autism: Don’t Laugh! It Could Happen…
by David Celiberti, PhD, BCBA-D and Denise Lorelli, MS

Yes, sadly it can happen. With 400+ purported treatments for autism, there is no shortage of such whose name begins with an activity, substance, or favorite pastime and ends in the word “therapy.” A cursory internet search would reveal such “therapies” as music therapy, art therapy, play therapy, sand therapy, dolphin therapy, horseback riding therapy, bleach therapy, vitamin therapy, chelation therapy, and helminth worm therapy joining the list of the more established habilitative therapies such as physical therapy, occupational therapy, and speech-language therapy (this is by no means an exhaustive list of the array of “therapies” that are marketed to consumers). Touted therapies can involve all sorts of things. I recall sitting on a panel at Nova University in the late ‘90s with another provider boasting the benefits of llamas and lizards as well.

What concerns us are the assumptions – made by consumers and providers alike – that promoted “therapies” have legitimate therapeutic value, when, in fact, there is often little-to-no scientific evidence to support them. Some might rightfully say that many of these touted methods are “quackery” without such evidence. The focus on such unproven methods or “therapies” may result in financial hardship and caregiver exhaustion, further exacerbating the stress levels of participating families. What is most alarming is that these “therapies” may be detrimental because they may separate individuals with autism from interventions that have a demonstrated efficacy, thus delaying the time of introduction of effective therapy.

This concern is echoed by the American Academy of Pediatrics. In their guidelines focusing on the management of autism spectrum disorders, they state: “Unfortunately, families are often exposed to unsubstantiated, pseudoscientific theories and related clinical practices that are, at best, ineffective and, at worst, compete with validated treatments or lead to physical, emotional, or financial harm. Time, effort, and financial re-sources expended on ineffective therapies can create an additional burden on families” (p. 1174).

If a child diagnosed with cancer were prescribed chemotherapy, there is a reasonable expectation that chemotherapy would treat or ameliorate the child’s cancer. Parents of individuals with autism have that hope as well when their children are provided with various therapies. While this hope is understandable, it is often placed in a “therapy” for which there is an absence of any legitimate therapeutic value. We hope the following will help both providers and consumers become more careful in how they discuss, present, and participate in various “therapies.”

SOME FAULTY ASSUMPTIONS REGARDING “THERAPIES”

1. Anything ending in the word “therapy” must have therapeutic value. The word “therapy” is a powerful word and clearly overused; therefore, it would be helpful to begin with a definition. Let’s take a moment and think about this definition:

Merriam-Webster
Therapy: noun \ˈther-ə-pē\ “a remedy, treatment, cure, healing, method of healing, or remedial treatment.”

When a “therapy” provider or proponent uses the word “therapy,” he/she is really saying: “Come to me…I will improve/treat/cure your child’s autism.” The onus is on the provider/proponent to be able to document that the “therapy” has therapeutic value, in that it treats autism in observable and measurable ways or builds valuable skills that replace core deficits.

2. Providers of said “therapy” are actually therapists. It is not unreasonable for a parent or consumer to assume that the providers of particular “therapies” are bona fide therapists. It is also reasonable for a parent to believe that someone referring to him/herself as a therapist will indeed help the child. However, simply put, if an experience is not a therapy, then the provider is not a therapist. He or she may be benevolent and caring, but not a therapist.

Some disciplines are well established and have codified certification or licensed requirements, ethical codes, and practice guidelines (e.g., psychology, speech-language pathology, occupational therapy). Consumers would know this, as “therapy” providers will hold licenses or certifications. Notwithstanding, consumers can look to see if the provider has the credentials to carry out a particular therapy, and these credentials can be independently verified (please see http://www.bacb.com/index.php?page=100155 as an example). A chief distinction is that licenses are mandatory and certifications are voluntary. In the case of licensure, state governments legislate and regulate the practice of that discipline. It cannot be over-stated that just because a discipline has certified or licensed providers it does not necessarily mean that those providers offer a therapy that works for individuals with autism. This segues into the third assumption.

3. All “therapies,” by definition, follow an established protocol grounded in research and collectively defined best practices. Let’s revisit our chemotherapy example. Chemotherapy protocols have a basis in published research in medical journals and are similarly applied across oncologists. In other words, two different oncologists are likely to follow similar protocols and precise treatments with a patient that presents with similar symptoms and blood work findings. This is not the case with many autism treatments. Most therapies lack scientific support altogether and are often carried out in widely disparate ways across providers often lacking “treatment integrity.”

4. If “XYZ therapy” is beneficial for a particular condition, it would benefit individuals with autism as well. Sadly, this kind of overgeneralization has been observed and parents of children with autism are often misled. Suppose underwater basket weaving was demonstrated through published research to improve lung capacity. Touting the benefits of this as a treatment for autism would clearly be a stretch. Therapeutic value in autism must focus on ameliorating core symptoms and deficits associated with autism such as social challenges, improving communication skills, and reducing or eliminating the behavioral challenges associated with autism.

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Federal Government Calls for Greater Inclusion of Children with Disabilities in Preschools

Federal officials say that young children with disabilities should be receiving educational services in inclusive settings in greater numbers. (Antonio Perez/Chicago Tribune/TNS)

The U.S. Departments of Education and Health and Human Services are encouraging greater inclusion of children with disabilities in preschools, Disability Scoop reports. The Department of Education has reported that while a majority of preschoolers with disabilities did attend general early childhood programs since 2013, more than half received special education in contained environments.

States are being urged to create task forces to promote early childhood inclusion, establish new policies, and allocate funds to facilitate these programs and track goals for expanding inclusive learning opportunities.

In a draft policy statement on the inclusion of children with disabilities by the Departments of Education and Health and Human Services, the lag in progress on giving children with disabilities and their families access to inclusive early childhood programs is troubling for several reasons, such as:

  • “Being meaningfully included as a member of society is the first step to equal opportunity, one of America’s most cherished ideals, and is every person’s right—a right supported by our laws.
  • “A robust body of literature indicates that meaningful inclusion is beneficial to children with and without disabilities across a variety of developmental domains.
  • “Preliminary research shows that operating inclusive early childhood programs is not more expensive than operating separate early childhood programs for children with disabilities.
  • “Meaningful inclusion in high-quality early childhood programs can support children with disabilities in reaching their full potential resulting in societal benefits more broadly” (U.S. Departments of Education and Health and Human Services, 2015).

What are your thoughts on this urge for change in the early childhood setting?

Read more: “Feds Call for Greater Inclusion in Preschools”

Tip of the Week: Two Essential Considerations When Toilet Training Boys

Last year, I had the opportunity to interview Gary Weitzen, the Executive Director of POAC Autism Services and the Autism Shield Program. (You can see the blog post about that interview here.) In the months since our interview, many of his comments have stuck with me, but one in particular has impacted my daily work with students. He said, “A lot more boys have autism than females but the vast majority of educators in special ed, and in particular with autism, are females.” He went on to provide examples of how this fact influences some skill development, specifically with toilet training.

Child on Toilet 2 BlogThis leads to several considerations to take into account when toilet training boys. I agree with Weitzen that some of these issues arise from the simple fact that women are predominantly toilet training boys. However, it’s also possible that such issues arise from the fact that many boys are trained in early intervention or preschool years without consideration of the implications of those training techniques several years down the line, and without further intervention or training later in life. Either way, it’s important to recognize that training of life skills should be completed in such a way as to develop effective skills that are similar to those of the child’s same-age peers. To that end, here are two considerations:

Consider hygiene. Something I had never thought about prior to my conversation with Weitzen is that after boys use the bathroom, then zip up their pants, it’s easy for a little urine to drip onto their pants. Especially once children reach upper elementary and middle school grades, a spot of urine can be socially isolating or an invitation for bullying. Weitzen acknowledges that it can be difficult to teach boys to gently shake their penis before zipping up, especially because teachers don’t want to inappropriately touch the students. However, for the long term, it’s essential that teachers find a way to teach this simple action.

Consider the topography of the behavior. When we think about topography, we basically mean, “What does the behavior look like.” When initially toilet training, teachers will typically have the student pull his/her pants down to the floor. Weitzen shared a personal experience from several years ago, when he was a chaperone on a field trip with his son who is autistic. At one point, the teachers asked him to take the boys to the bathroom, so Weitzen went in with eight 14-year-old boys with autism. He said, “They took their pants and pushed them right down to their knees at the urinal at Medieval Times. So we had seven hairy tushies in the room. Out in public! And what happens is other dads and other boys came in there and everyone’s laughing and commenting and pointing.” This is the type of situation that teachers and parents do not want students to experience. When toilet training, it’s essential to recognize that the topography of the behavior in the male restroom is to unzip the pants, and then pull the fabric aside in order to urinate in the urinal. While it may be easier to teach students to pull their pants down in the initial phases of toilet training, it’s important to continue shaping behavior until it has the appropriate topography.

If our students continue to pull their pants down completely, they become targets for bullying, or worse. Weitzen says that on multiple occasions, he’s had parents report to him that their child used the bathroom at the urinal, and when they pulled their pants to the floor, another student took a picture of them. “Four different moms told me that, and if four moms told me that, I can’t imagine how often that’s happening,” Weitzen said. “And even if they’re not sharing the photo, well now you’re the weird kid who sticks his butt out. And you’re isolated and you’re picked upon, so we have to be real. We have to realize our guys live in the real world and teach them the skills that they need.”

WRITTEN BY SAM BLANCO, MSED, BCBA

Sam is an ABA provider for students ages 3-12 in NYC. Working in education for ten years with students with Autism Spectrum Disorders and other developmental delays, Sam has developed strategies for achieving a multitude of academic, behavior, and social goals. Sam is currently pursuing her PhD in Applied Behavior Analysis at Endicott College.

Autism Awareness Month Interview Series: Getting the Services Your Child with Autism is Legally Entitled To with Gary S. Mayerson, JD

This week, our exclusive interview series with BCBA Sam Blanco features the renowned Gary Mayerson, JD, founder of Mayerson & Associates, the very first civil rights law firm in the nation dedicated to representing individuals with autism and related developmental disorders. In this interview, he reveals valuable advice for parents and caregivers on how to find and obtain the services their children are entitled to.


Getting the Services Your Child with Autism is Legally Entitled To
with Gary S. Mayerson, JD

SAM BLANCO: Can you address any common misconceptions related to IDEA or LRE?

GARY MAYERSON: The federal IDEA statute is governed primarily by what is “appropriate” for the student, as opposed to what is “best” or “optimal.” Unfortunately, the IDEA statute does not define the word “appropriate” and that confusion accounts for many of the conflicts that will arise between parents and school districts, who are obligated to provide a FAPE (a “free and appropriate public education”). On the other hand, LRE, otherwise known as “least restrictive environment,” is one of the few “maximizing” provisions in the IDEA statute. LRE is Congress’ mandate that students with disabilities be educated with their non-disabled peers to the “maximum extent appropriate,” even if doing so requires supplemental aids and services. The LRE mandate requires school districts to consider what is known as “the full continuum” and not rely upon “one size fits all” special education classrooms.

SB: What is the most important piece of advice you can give to parents as they begin the process of finding an appropriate school placement for their child?

GM: The best advice I could give parents who are just getting started is to seek out the best possible baseline of assessments and evaluations to tease out the strengths and challenges, identify and address any interfering behaviors, and hopefully get a good sense as to how their child learns, i.e., what kinds of programs are likely to be effective or not. Without the benefit of solid evaluations, the discussion at the IEP meeting will likely be relegated to “this is what the parents want.” When parents are able to provide quality evaluations, the discussion is elevated to “this is what professionals are recommending.” School districts are far more likely to take action based on the recommendation(s) of experts. Early intervention is always best. Accordingly, once evaluations and assessments are available to guide intervention, services should start ASAP. Parents of children diagnosed on the autism spectrum who are just getting started will find very useful information at www.autismspeaks.org. Autism Speaks offers an online “100 Days Kit” to help parents wade through the initial time frame following a diagnosis.

SB: Many parents struggle with the costs associated with autism. What advice do you have for them to alleviate some of the expenses?

GM: This is a thorny topic because even families with significant financial resources will struggle to pay for the daunting cost of effective programming where autism is the core disability. Today, most states (including New York) have enacted insurance reform, which means that many intervention services will be covered by private insurance, typically limited to an annual cap of approximately $40,000 or so. Parents should also consider obtaining home and community based services by filing for a “Medicaid waiver.” In addition to accessing insurance benefits and applying for a Medicaid waiver, families should register with early intervention (“birth to three”) and later, with their Committee on Preschool Education (3-5) and later, with their Committee on Special Education (5-21) to secure a public program. If, however, the public program is not appropriate or adequate, with timely advance notice, parents can file for a hearing to seek to obtain reimbursement or other funding for services and programming that is appropriate. Even short of a lawsuit, if parents are unhappy with the school district’s evaluation, they can request an “independent (private) evaluation” at the expense of the school district.

SB: Do you have recommendations for how parents keep track of records for legal purposes?

GM: Good record keeping is absolutely essential for parents. A great low tech, low cost method every parent should employ– keeping a $.99 notebook “log” of all your conversations with evaluators, school district personnel and providers. Everything important needs to be confirmed and documented in writing. This, however, does not mean sending a letter by certified mail. Faxes are just fine (but be sure to keep the fax transmittal confirmation), as are emails. Make sure to save every notice, letter and communication. For the IEP meeting, parents should either take good notes or, in situations where distrust has arisen, consider tape recording the meeting. Parents who observe schools that are being recommended by the school district also should record their observations, both good and bad.

SB: What resources do you recommend for parents to educate themselves about their legal rights?

GM: While there often is no substitute for seeking the assistance of an experienced attorney or other advocate, there actually are a number of good resources for parents to turn to in order to become better informed as to their child’s rights and entitlements. Parents, for example, will find useful information at www.wrightslaw.com and at www.mayerslaw.com. Our law firm invites parents to sign up for the firm’s quarterly informational newsletter. In addition, parents should carefully review the “parental rights” booklet that all school districts are required to provide in the context of the IEP process. Parents can also contact their local SEPTA or PTA. Finally, each state’s department of education will post, online, valuable information that parents can access free of charge, 24/7.

SB: Do you discuss estate planning for parents of children with special needs? When do you advise parents to begin making those plans?

GM: Parents of special needs children live with constant worry, knowing that they will not be able to live and protect their child forever. All parents–even those without any financial resources–should have a will that addresses estate planning issues, and the question of who will take over the parental role when the parent is no longer around to do so. Parents with financial resources, or who expect to come into money in the future, need to engage counsel to set up a “special needs trust” for their child—so as to allow the child to receive Medicaid and Social Security benefits without endangering the estate when such benefits are accessed. It is never too early to discuss estate planning issues, and too many parents overlook estate planning issues until it is too late. Parents also should timely commence guardianship proceedings well before the child reaches the age of majority (18 in most jurisdictions). Otherwise, a child who reaches the age of majority without a guardianship order may leave the jurisdiction and put themselves in danger with parents being left with little, if any, legal recourse. This is not to say, however, that obtaining guardianship is a given. Obtaining guardianship requires a showing, deemed acceptable to the court, that the child is incapable of making their own decisions.

SB: Can you describe legal considerations across the lifespan? For instance, what should the preschooler’s parents be considering as opposed to the teenager’s parent?

GM: The perspective and legal considerations when a child is a preschooler are different than when a child reaches his or her teens. While learning can and will continue into adulthood, most scientists and educators are in agreement that the same effort will produce greater learning, with a greater “rate of acquisition,” when the same child is younger. For this reason, judges and hearing officers are most comfortable “investing” significant public resources in the younger child. Because of the value of “early intervention,” parents need to obtain a diagnosis and classification as soon as possible. This means obtaining quality assessments that come with specific recommendations. Parents of children at the preschool age should thus timely receive the services and service levels that are being recommended by professionals. When the child enters his or her teens, that child still may require intensive services. However, as mandated by federal and state law, when a child is about to turn 16 (15 in New York), the IEP is supposed to shift into high gear with “transition” assessments, vocational training, and post-secondary outcomes. At all stages, parents should make sure that educators and service providers are promoting “generalization,” and that increased independence and self –sufficiency is the constant beacon on the horizon.

ABOUT GARY S. MAYERSON, JD

Gary Mayerson is a graduate of the Georgetown University Law Center and the S.I. Newhouse School of Public Communications at Syracuse University. In early 2000, Gary founded Mayerson & Associates as the very first civil rights law firm in the nation dedicated to representing individuals with autism and related developmental disorders.

Gary speaks regularly at national conferences and major universities and has testified before Congress on the subject of the federal Individuals with Disabilities Education Improvement Act (“IDEIA”). At the invitation of the United Nations, Gary spoke on the subject of facilitating inclusive education. Gary is well published in the field and is the author of How To Compromise With Your School District Without Compromising Your Child (DRL Books 2005), the “Legal Considerations” chapter appearing in the Second Edition of Dr. Donna Geffner’s book, Auditory Processing Disorders (2013), and the “Autism in the Courtroom” chapter appearing in the Fourth Edition of Dr. Fred R. Volkmar’s seminal treatise, Autism and Pervasive Developmental Disorders (2014).

Gary has been interviewed by the Today Show (NBC), Dan Rather (HDNet), Katie Couric, CNN, HLN, ABC, NPR, New York Magazine, the Wall Street Journal, Congressional Quarterly Researcher and the New York Times, among other media. In 2014, after being peer-nominated and vetted across 12 factors by an attorney led research team, Gary was named by Super Lawyers Magazine as one of the top attorneys in the New York metropolitan area.

In addition to the U.S. Supreme Court, Gary is admitted to the Second Circuit Court of Appeals, the Third Circuit Court of Appeals, the Fifth Circuit Court of Appeals, the Sixth Circuit Court of Appeals, the Seventh Circuit Court of Appeals, the Tenth Circuit Court of Appeals, and the Eleventh Circuit Court of Appeals.

Gary is responsible for more than sixty reported federal court decisions, including Deal v. Hamilton County, the very first autism case to ever reach the U.S. Supreme Court. Gary’s work also was instrumental in T.K. v. NYCDOE (bullying recognized as a “FAPE” deprivation), R.E. v. NYCDOE and C.F. v. NYCDOE (cases rejecting school district’s attempts to rely upon “impermissible retrospective evidence” at trial), T.M. v. Cornwall (least restrictive environment mandate as applied to ESY), L.B. v. Nebo School District (pertaining to “supported inclusion” and Congress’ “least restrictive environment” mandate), V.S. v. NYCDOE (parents have a procedural right to evaluate the school assignment) and Starego v. NJSIAA, a federal court settlement affording Anthony Starego, a 19-year-old high school placekicker with autism, an unprecedented fifth season of interscholastic competition (incredibly, that additional season had a storybook ending, with Anthony and his team going on to win the 2013 State Championship 26-15 after Anthony contributed points from two successful field goals!).

Gary has served on the national board of Autism Speaks since its inception in 2005 and founded its Federal Legal Appeals Project, a pro bono initiative at the federal level. In addition, Gary serves on the Boards of JobPath, a not-for-profit based in Manhattan that is dedicated to securing and supporting meaningful employment opportunities for adults with autism, and ALUT, Israel’s largest autism not-for-profit. Gary also serves on the Professional Advisory Board of the New England Center for Children (NECC), a residential school for students with autism located in Southborough, Massachusetts.

Gary testified before the New York City Council in support of “Avonte’s Law,” a safety enhancement measure introduced by Councilmember Rob Cornegy that, once fully implemented, will provide an additional layer of protection for students with autism who have a propensity to wander. Most recently, Gary and attorneys Maria McGinley and Jacqueline DeVore worked behind the scenes to help secure a conditional pardon from the Governor of Virginia for “Neli” Latson, a young man with autism, previously placed in solitary confinement, who is now receiving the therapeutic treatment that he needs.

Volunteers Needed to Test Database of Colleges for Students for Autism

ASD-DR.com is launching a college-search resource to help families with autistic students. There are many online search sites with information about colleges, but few of them include information on the support services available at these institutions. This new resource allows parents and other caregivers of students with autism to search through a database of over 300 colleges across the U.S. with autism services.

They are looking for volunteers to help in developing this database by previewing the content and answering the following questions:

  1. What additional information would you like?
  2. What search options should be added?
  3. What information is not needed?

Be sure to sign up by March 30. The database will be available only for those who have a log-in and password, which Dawn Marcotte will provide on April 1, 2015. Those interested should sign up at www.asd-dr.com.

ASD-DR Volunteer Request