Regulating Sleep in Children with Autism

With the new school year in session, it’s especially important to regulate sleep in students. In this month’s ASAT feature, Lauren Schnell, MA, BCBA, offers insight on a variety of approaches parents can take to address sleep disturbances in their kids with autism. 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!


I am a home program coordinator who works with a six-year old child diagnosed with autism. The parents are concerned because their child struggles at bedtime and will often wake up in the middle of the night to come into their room. The parents want their child to stay asleep and have tried everything to get him to stay in bed all night. What can I suggest they do to treat their child’s sleep behavior?

Answered by Lauren Schnell, MA, BCBA

Sleep disturbances in children with autism are a common concern for many parents. It has been estimated that approximately 25% of typical children between the ages of one and four struggle with nighttime wakings (Lozoff, Wolf, & Davis, 1985). For children with special needs, the number increases dramatically with upwards of 80% experiencing some type of sleep problems (Lamberg, 1994). Of those who frequently wake at night, the majority end up sleeping in their parent’s bed and the sleep problems often persist over time.

Regulating Sleep in Children with Autism

The good news is there are a variety of behavior analytic approaches found to be effective in addressing sleep disturbances in children with autism. An underlying premise of these approaches is that poor sleep patterns are learned, and, as such, can be unlearned.

Prior to implementing a behavioral sleep program, it is important to first rule out any medical reasons for the sleep disturbance, such as physical discomfort related to an illness. Discussions with a pediatrician should help to determine if the sleep issues may be associated with an underlying medical issue and if further testing or evaluation is warranted.

If the sleep issues are thought to be behavioral, the first step is to complete a sleep log to determine the extent of the problem and potential environmental factors that may be adversely affecting the child’s sleep. A sleep log outlines the time the individual is put into bed, the actual time he/she falls asleep, frequency of night wakings, and the duration of those awakenings. Additional information may be collected on any other behaviors which are observed during bedtime, such as tantrums during the bedtime routine or disruptive behavior during the night. Baseline data collection should continue until a consistent pattern of sleep (or lack thereof) or challenging behavior is apparent. This information can later be used to assess the effectiveness of the sleep intervention.

Some questions which may be helpful for parents in completing the sleep log are:

  • What time does the child go to bed?
  • What does the child do leading up to bedtime?
  • What else is going on in the home while the child is in bed which could be influencing his/her sleep?
  • What activities does the child engage in prior to falling asleep?
  • What time does the child awaken during the night as well as in the morning?
  • Does the child take naps during the day?

Based upon the results of the baseline data collected in the sleep log, a number of interventions may be considered. Below are several practical strategies which may be helpful to improve the sleep behavior of the child with autism.

Bedtime Routines
A bedtime routine can be helpful for the child, as it creates predictability in the sequence of activities leading up to bedtime. A written or visual schedule may be helpful in ensuring the routine is consistently followed. The schedule should outline activities preceding bedtime; for example, brushing teeth, changing into pajamas, saying goodnight to loved ones, and reading a bedtime story. The routine should begin at least 30-60 minutes prior to bed time. It is also recommended that parents eliminate all foods and drinks containing caffeine at least six hours prior to bed, and avoid rigorous activities during the later evening hours.

Initially, the child may need a high rate of positive reinforcement for following the routine. Eventually, the parent may consider providing the child with positive reinforcement the following morning if he/she successfully follows the nighttime activity schedule and remains in bed throughout the night. Such reinforcement might include earning access to a favorite breakfast cereal, a toy, or getting a sticker to put on a special chart upon waking (Mindell & Durand, 1993). Continue reading

10 Things Autism Awareness SHOULD Be About

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 things autism awareness should be about. 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!

10 Things Autism Awareness SHOULD Be About

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: Keeping Up With the Science

A major tenet of Applied Behavior Analysis is that it is evidence-based. For decades, our field has conducted research about behaviors we can observe in the environment, and worked to create positive behavior change. But keeping up with research or determining what is actually evidence-based can be quite challenging.

One way that some organizations and schools address this is by having a “journal club” of sorts. An article is selected each month, staff read it, and then everyone comes together to discuss it. This is a great way to get people talking about evidence-based procedures, help introduce people to new concepts, and create an environment that relies on science rather than anecdotal information.

Here are a few tips to get you started:

  • Poll your participants. What topics might they be interested in? What dates and times work best for them? What is something they want to learn more about? You can use this information to get off on the right foot.
  • Sweeten the meeting. Make it fun with snacks or themes. It’s amazing how free food can draw people in.
  • Create questions for consideration. When you hand out the article, provide five or six questions for participants to consider as they read. This will help guide their reading and your conversation when you meet.
  • Make it applied. Think about how the information in the article can be used in your own setting. Have people discuss what it would look like if they tried out the interventions themselves.

Finally, take a look at Reading Groups: A Practical Means of Enhancing Professional Knowledge Among Human Service Practitioners by Parsons & Reid. This article demonstrates the utility of such groups, as well as important variables for implementing them successfully.

Good luck, and happy reading!

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.

“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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Simplifying the Science: Choiceworks App – Increase Self-Monitoring and Autonomy in Students with ASD

Finding the appropriate educational setting for individuals with autism can be quite challenging. And in working to provide the least restrictive environment, sometimes students are placed in classrooms where they can do the work but requires additional supports. This makes teaching self-monitoring all the more important as we strive to help our students attain independence in all areas.

A recent study by Miller, Doughty, & Krockover (2015) used an iPad app as part of an intervention to increase self-monitoring for three students with moderate intellectual disabilities in their science class. The goal was to increase autonomy in problem-solving activities linked the science lesson for that day. The app they used was called Choiceworks, which the authors described as: “a daily routine board maker [that] contains prompting tools to assist users through daily tasks. Checklists, schedule boards, activity timers, and a communication board can be developed using this system” (p. 358).

Over the course of a two-week period, each student was provided with three training sessions for how to use the iPad based on a task analysis the authors had devised. Skills taught included swiping, changing the volume, and operating the Choiceworks app. Next, the authors introduced five steps of problem-solving and provided mini-lessons on each of the steps. The authors used stories that required problem-solving, then taught the students how to use the app to navigate through the five steps of problem solving. Finally, the intervention was introduced in the science classroom.

All three students in this study significantly increased their independence in problem-solving. Furthermore, the results were generalized to solving problems related to daily living and were maintained over time.

The results of this study are important for several reasons. First, it demonstrates one method for increasing independence in individuals with developmental disabilities. Second, this increase in independence provides opportunities for more natural peer interaction since the individual with the disability will not have an adult always standing next to them. Finally, using a tool such as an iPad mini (as these researchers did) or iPhone is beneficial because many people are walking around with such devices, allowing individuals with disabilities to use a device to promote independence without increasing the threat of social stigma. The authors clearly show that, when provided with proper instruction, students with developmental disabilities can use the iPad mini to become more independent with both academic and daily living skills.

REFERENCES

Miller, B., Doughty, T., & Krockover, G. (2015). Using science inquiry methods to promote self-determination and problem-solving skills for students with moderate intellectual disability. Education and Training in Autism and Developmental Disabilities, 50(3), 356-368.

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.

21st Annual Eden Princeton Lecture Series: March 19–20, 2015

Mark your calendars! This terrific lecture series by Eden Autism Services is happening again on March 19–20, 2015 at Princeton University. Guest lecturers include Connie Kasari, PhD, Helen Tager-Flusberg, PhD, Matthew Goodwin, PhD, Ron Suskind, and more.

Attend the 21st Annual Princeton Lecture Series to learn more about current technologies in autism research, strategies for effective early intervention programs, and more. For more information about the event, please email Joni Truch or call (609) 987-0099 ext. 4010.

You can also download a copy of the event brochure here (Registration Form included inside)!

ASD Brains Show Decrease in Neuronal Autophagy, Underlying Oversensitivity and Deficits in Social Interaction

SOURCE: New York Times article by Pam Belluck

A recent study led by David Sulzer at Columbia University Medical Center showed that in children and adolescents with autism, brain tissue within the temporal lobe exhibit a decrease in neuronal autophagy (the brain’s process of clearing out old and degraded cells), which underlies oversensitivity and deficits in social interaction.

NY Times: Guomei Tang, PhD and Mark S. Sonders, PhD/Columbia University Medical Center

In early development, synapses—connections that allow neurons to communicate with each other—allows for infants to develop with as much external stimuli and information as possible. However, in childhood and adolescence, these synapses are gradually “pruned” so that the brain can develop more specific and advanced functions by not being overloaded with stimuli. As one can imagine, brains of children with autism fail to “prune” these synapses, causing them to be constantly overloaded with stimuli. In this study, young children with and without autism show roughly the same number of synapses, suggesting a “pruning” problem in autism, rather a problem with overproduction. Dr. Sulzer’s team also found biomarkers in the brains of children and adolescents diagnosed with autism, which suggested malfunctions in the process of autophagy (the neural degradation of old cells and damaged cell organelles). Without autophagy, the synaptic pruning process can’t occur.

These findings give us some insight into how autism develops from childhood onward, and help explain symptoms like oversensitivity and deficits in social interactions. Whether autism is a problem of brains with too little connectivity or too much of it has been of debate in recent years in the field of autism research. Ralph-Axel Müller, at San Diego State University, found in his studies that there was too much connectivity within brains of individuals with autism. “Impairments that we see in autism seem to be partly due to different parts of the brain talking too much to each other,” he reported to the NY Times. “You need to lose connections in order to develop a fine-tuned system of brain networks, because if all parts of the brain talk to all parts of the brain, all you get is noise.1

Eric Klann, a professor at New York University, also acknowledged an autophagy decrease in ASD brains. “The pruning problem seems to happen later in development than one might think,” Dr. Klann informed the Times. “It suggests that if you could intervene in that process that it could be beneficial for social behavior.”1 With further research into how this decrease in autophagy—and thus the synaptic pruning process in brains of children with autism—can be addressed earlier in a child’s development, there is hope that symptoms of autism may be preventable in the future.

1 “Study Finds That Brains With Autism Fail to Trim Synapses as They Develop.” New York Times. 21 Aug. 2014. Web. <http://www.nytimes.com/2014/08/22/health/brains-of-autistic-children-have-too-many-synapses-study-suggests.html>.

Obama Signs Autism CARES to Renew Funding for Support

Late last Friday, August 8th, President Obama signed the Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES), a reauthorization of the U.S.’s primary autism legislation, which includes over a billion dollars in federal funding for autism research, services, and support.

Autism CARES is a renewal of what was previously called the Combating Autism Act, which was first enacted in 2006. The renewal calls for $260 million in funding per year through 2019 for autism research, prevalence tracking, screening, professional training, and other initiatives. It will also ensure a new point person in the U.S. Department of Health and Human Services to oversee research and support services and activities related to autism. Amendments will also be made to the Interagency Autism Coordinating Committee, mandating that a new report be conducted on the needs of young adults and youth during transition.

“The Autism CARES Act will allow us to continue to build on these efforts. It will increase understanding of the barriers that youth and young adults with an autism spectrum disorder or other developmental disability face as they transition from school-based services to those available during adulthood by charging federal agencies with assessing the particular needs of this population,” said Taryn Mackenzie Williams, Associate Director of the White House Office of Public Engagement.

To find out more about how the Department of Health and Human Services is supporting autism, visit their website here.

Weekly Autism Tip from Rethink Autism

Our friends over at Rethink Autism offer a great, FREE weekly autism tip. Check out this week’s tip which focuses on going back to school.

Rethink Autism makes research-based autism treatment tools accessible and affordable for parents and professionals around the world. They have an innovative web-based platform that includes a comprehensive curriculum with over 1,200 video-based exercises, staff/parent training modules, and ongoing assessment tools – all developed by leaders in the field of autism education and research. They also offer virtual support services, ranging from short-term problem behavior assessment to ongoing case consultation with our team of experts.