“Productive Meetings in Home ABA Programs” by Preeti Chojar

Creating effective meetings with your child’s BCBA and other service providers can be difficult. In this month’s ASAT feature, Preeti Chojar, Board Member of the Association for Science in Autism Treatment (ASAT), shares some valuable tips about how parents can make the most out of these meetings. 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 parent who has a home-based ABA program.  We have monthly meetings with all of the providers that work with my child.  I am looking for some ideas on how to make the most of these meetings.  Any suggestions?

Answered by Preeti Chojar, Mother and ASAT Board Member

It is terrific that your team meets monthly! Collaboration and consistency amongst members of the professional team is the hallmark of a successful home program. I have found that a great way to build teamwork is to have regular meetings to keep the whole team on the same page. Here are some suggestions to help you use this time effectively and efficiently. In our particular case, we meet monthly, but keep in mind that some teams may need to meet more frequently (depending on the composition of the team, level of oversight required, and needs of the child).

Meeting composition
Ideally, a time should be scheduled when the entire team can be present. A supervisor like a behavior consultant (e.g., BCBA) or a family trainer should be present as well. It could also include any related service providers, such as the speech pathologist, occupational therapist, or physical therapist. Assembling the entire team can be difficult but try your best, as the benefits will make it worthwhile.

Develop the agenda
Always create an agenda well before a team meeting. Please note that this agenda should not side-step any other communication that should be occurring (e.g., the consultant may want to know right away if a new skill-acquisition program is not going well).

  • Start by writing down any new behaviors, both positive and negative. Also note if there is evidence of lost skills or discrepancies in skill levels across settings, situations or people.
  • Any data taken by instructors should be summarized and analyzed before the meeting.
  • Add anything that the supervisor or the collective wisdom of the group could help resolve.
  • One of the agenda items should always be to review last month’s meeting notes paying close attention to any open or unfinished items.
  • If the child is also receiving services in a school or center-based environment, it is beneficial to seek input from those providers as well. Any observations made by people in the community that highlight some skill or skill deficit which had gone unnoticed can be brought to the table too.
  • Finally, make sure the agenda is well balanced and addresses everyone’s concerns. Prioritize agenda items and if necessary suggest some time limits.

Circulate the agenda

  • Make sure to circulate the agenda to everyone attending the meeting, ideally a few days before the meeting.
  • Ask all team members to notify you ahead of time of any other agenda items they might have that were not added yet.

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Tip of the Week: Considerations for Parents on “Grounding” Kids

Many parents choose to “ground” their kids when they make poor decisions. Maybe they lose access to video games for a week, or can’t watch TV for a month. Grounding in and of itself is not necessarily a bad thing. Here are a few considerations:

  • Latina Mother Scolding DaughterIf you keep grounding your kid for the same behavior, then grounding is not changing the behavior. Sometimes grounding your child is a default response, but if it’s not working, you might want to consider some other options. You can take a look back at our series on
    differential reinforcement
    or our post on noncontingent reinforcement.
  • When possible, the consequence should be connected to the behavior. If your child throws a controller, then not having access to video games makes great sense. However if video games are taken away for any infraction, it may not be the most logical punishment and over time, it may even backfire. If the child is losing video games for everything, then he/she might stop trying to earn video games at all.

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“Science, Pseudoscience, and Antiscience: Choices that Change Lives” by Gina Green, PhD, BCBA-D & Lora Perry, MS, BCBA

Finding effective treatments for their children with autism is one of the most difficult challenges parents face. In this month’s ASAT feature, Gina Green, PhD, BCBA-D and Lora Perry, MS, BCBA share insights about the many claims that are made about treatments for autism, and suggest some questions parents can ask to help them decide which treatments are most likely to help. 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!

Science, Pseudoscience, and Antiscience: Choices that Change Lives
Gina Green, PhD, BCBA-D and Lora Perry, MS, BCBA

The Importance of Informed Treatment Decisions
“Your child has autism.” With those words, a parent’s world comes crashing down. What to do? Choosing a treatment is one of the most important decisions the parents of a person with autism will ever have to make. How do parents find truly effective treatment for their child? In an ideal world, the person who dropped the autism diagnosis on a family would provide the answer. But the unfortunate fact is that many who make this diagnosis are not well informed about the wide array of autism treatments, and the degree to which these treatments have proven effective (or not). So until the day comes when parents can count on data based professional guidance, they will need to become very discerning about the various treatments, therapies, and programs that are claimed to be effective for autism. The same applies to those who are concerned with helping families get effective services. There is a need to do a lot of homework, and to do it quickly. Why the urgency? Because the stakes are high, and every moment is precious.

Children and adults with autism can learn, and there are effective methods for helping them develop useful skills and lead happy, productive lives. At the same time, research has shown that many currently available interventions for autism are ineffective, even harmful, while others have simply not been tested adequately. Every moment spent on one of those therapies instead of effective intervention is a moment lost forever. Besides, common sense suggests that it is wise for parents and professionals alike to invest in interventions that can be reasonably calculated to produce lasting, meaningful benefits for people with autism—that is, interventions that have withstood scientific testing.
As parents and professionals seek information about autism treatments, they discover a long and perplexing list of “options,” many of them promoted by sincere, well-meaning, persuasive people. Everyone claims that their favorite treatment works, and parents and practitioners are often encouraged to try a little bit of everything. This can be very appealing to people who are seeking anything that might help. How does one choose wisely? To quote the late Carl Sagan, “The issue comes down to the quality of the evidence.” So the first step is to find out exactly what evidence is available to support claims about autism treatments. But all evidence is not created equal. How does one sort pure hype from solid proof, wishful thinking from rigorous testing?
Science, Pseudoscience, and Antiscience
Approaches to answering fundamental questions about how the world works can be grouped into three broad categories: science, pseudoscience, and antiscience. Science uses specific, time-honored tools to put hunches or hypotheses to logical and empirical tests. Some of those tools include operational definitions of the phenomena of interest; direct, accurate, reliable, and objective measurement; controlled experiments; reliance on objective data for drawing conclusions and making predictions; and independent verification of effects.
Science does not take assertions or observations at face value, but seeks proof. Good scientists differentiate opinions, beliefs, and speculations from demonstrated facts; they don’t make claims without supporting objective data.

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Tip of the Week: Consider the Long Term After Your Child’s Autism Diagnosis

In the years immediately after a parent learns of a diagnosis of autism, it can be especially challenging to think of the long term. But as parents advocate for their child, and as practitioners work with the family to create goals for that child, the long term must be considered. Mother Kissing Baby HandsHere are a few suggestions to help with considering the long term, while focusing on short-term goals:

  • Create a vision statement. One of my favorite books is From Emotions to Advocacy: The Special Education Survival Guide by Pam Wright and Pete Wright. This book covers everything parents need to know about advocating for a child with special needs. One of the first things they suggest is creating a vision statement. They describe this as “a visual picture that describes your child in the future.” While this exercise may be challenging, it can help hone in on what is important to you, your family, and your child with special needs in the long term.
  • Look at your child’s behaviors, then try to imagine what it might look like if your child is still engaging in that behavior in five or ten years. Often, behaviors that are not problematic at three are highly problematic at 8 or 13 years old. Such behaviors might include hugging people unexpectedly or (for boys) dropping their pants all the way to the ground when urinating (which could result in bullying at older ages). While it is easy to prioritize other behaviors ahead of these, it’s important to remember that the longer a child has engaged in a behavior, the more difficult it may be to change.
  • Talk to practitioners who work with older students. Many practitioners only work with a certain age group of children. While they may be an expert for the age group they work with, it may be helpful to speak with a practitioner who works with older kids and ask what skill deficits they often see, what recommendations they may make, and what skills are essential for independence at older ages.
  • Talk with other parents. Speaking with other parents of children with special needs can be hugely beneficial. Over the years, I’ve worked with hundreds of parents who are spending countless hours focusing on providing the best possible outcomes for their children. And while it’s impossible to prepare for everything that will come in your child’s life, it may be helpful to find out what has blindsided other parents as their children with special needs have grown up.

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.

How Siblings of Children with Autism Can Help Improve Behaviors

When I first came across this study, “Behavioral Training for Siblings of Autistic Children,” I was immediately hesitant. There’s something about the idea of sibling-as-therapist that makes me cringe a little bit. When I work with the families of children with autism, the hope is that the siblings of the child with autism still have a childhood without being pushed into the role of caregiver. And I also want the child with autism to have independence and feel like an individual who is heard, which may be more challenging if their siblings are issuing demands just as a parent or teacher would. But as I read the study, I realized that the work they completed had incredible social significance.

In the study, there were three pairs of siblings. The ages of the children with autism ranged from 5 years old to 8 years old. The ages of the siblings ranged from 8 years old to 13 years old. The researchers trained each sibling of a child with autism how to teach basic skills, such as discriminating between different coins, identifying common objects, and spelling short words. As part of this training, the researchers showed videos of one-on-one sessions in which these skills were taught, utilizing techniques such as reinforcement, shaping, and chaining. What the researchers did next was the part that really stood out to me: they discussed with the siblings how to use these techniques in other environments. Finally, the researchers observed the sibling working with their brother/sister with autism and provided coaching on the techniques.

It should be noted here that the goal of the study was not to have the siblings become the teacher of basic skills. Instead, it was to provide a foundation of skills in behavioral techniques for the sibling to use in other settings with the hope of overall improvement in the behaviors of the child with autism. The researchers demonstrated that, after training, the siblings were able to effectively use prompts, reinforcement, and discrete trials to effectively teach new skills. But, perhaps the most meaningful aspects of the study were the changes reported by both siblings and parents. The researchers provide a table showing comments about the sibling with autism before and after the training. One of the most striking comments after the training was, “He gets along better if I know how to ask him” (p. 136). Parents reported that they were pleased with the results and found the training beneficial.

This study provides excellent evidence that structured training for siblings has real potential for making life a little easier for the whole family. The idea isn’t that they become the therapist, but instead that knowledge truly is power.

References

Schriebman, L., O’Neill, R.E. & Koegel, R.L. (1983). Behavioral training for siblings of autistic children. Journal of Applied Behavior Analysis. 16(2), 129-138.

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.

 

“Elopement and Neighborhood Safety” by Kate Britton & Bridget Taylor

As the end of the school year approaches and students are let out on vacation, it’s important for us to consider the risks of elopement and overall neighborhood safety for children with autism. This month, we’re sharing a special feature from ASAT written by Kate Britton, EdD, BCBA and Bridget Taylor, PsyD, BCBA from Alpine Learning Group in New Jersey. Here, Kate and Bridget offer their guidelines on preventing potentially harmful situations and ensuring the safety of your children. 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!

Elopement and Neighborhood Safety
Bridget Taylor, PsyD, BCBA and Kate Britton, EdD, BCBA
Alpine Learning Group, NJ

Photo credit: AWAARE

You are not alone. In fact, according to an online survey conducted by the National Autism Association in 2007, 92% of the parents indicated their child with autism was at risk of wandering away from his or her home or care provider. More recently, Kiely et. al. (2016) reported survey results of families of children with Autism Spectrum Disorders which found that 49% of those children had made an attempt to elope since the age of four. Additionally, 62% of parents of children who elope reported that this behavior prevents them from participating in activities away from home. Children with autism are especially vulnerable if they wander away from caregivers, as they may not be able to communicate that they are lost, take steps to ensure their safety such as identifying who in the community is safe vs. unsafe, asking for assistance, or stating important information such as their phone number. We hope the following guidelines can help you in preventing potentially harmful situations.

Develop a “safety / reaction plan”. Develop a family safety plan and practice that plan. In the event of your child wandering, time is most important and a quick, efficient response can make a difference. For example:

  • Which family member will call the local police?
  • Which family member(s) will go out looking and where (e.g., the route to the child’s favorite park)?
  • Which family member will call neighbors of homes with pools?
  • Which family member will stay by the phone in case the child is found and returned home or to receive updates?

You can find a sample plan at the Autism Wandering Awareness Alerts Response and Education (AWAARE) Collaboration website (www.awaare.com). It would also be important for your child’s school or treatment center to implement an emergency plan for elopement.

Secure your home and yard. Secure your home and yard area so that your child is less likely to wander away. Sometimes standard locks are not enough as many children quickly learn how to operate standard locks on doors, windows and gates. Install locks on doors and gates in the yard that your child cannot open (consider location height and lock complexity). In addition, if your home has an alarm system, keep it set to go off whenever a door or window has been opened. If your home does not have an alarm, install an alarm system that signals when a door or window is opened. There are a variety of systems available, including high-tech and low-tech options. You may consider contacting a medical or educational provider, who can help identify resources to help obtain funding for such systems/equipment. Here are some suggested websites:

Install monitoring systems. Additionally, be sure to regularly monitor your child around the house by using a video monitoring system or a baby monitor that has video monitoring capability, such as:

Make the yard and pool area safe! If you have a pool or there is a pool nearby, ensure there is a locked fence surrounding the pool. You can also purchase a pool alarm for yours and/or your neighbors’ pools (e.g., www.poolguard.com). If your child goes into pools unsupervised, you can also use the Safety Turtle (www.safetyturtle.com), which is a wristband that locks securely around your child’s wrist and sounds an alarm if it becomes immersed in water.

Inform law enforcement. It is also critical to inform your police and fire departments that an individual with autism resides in your home. You can do this by calling your local non-emergency telephone number and asking personnel to note in the 911 database that someone with autism lives at your address. If there is ever an emergency, the emergency responders will know in advance that they need to respond accordingly. We also recommend giving local police and fire departments a picture of your child with your contact information on the back which can be helpful in identifying your child if s/he is ever brought to the station by someone else. Another suggestion would be to register with the National Child Identification Program (www.childidprogram.com). The program provides a kit that includes information on everything law enforcement would need in case of an emergency.

Educate neighbors. Another tip is to make sure your trusted neighbors are aware of your situation. Give them a picture along with some helpful information about your child (e.g., s/he is unable to speak, s/he responds to simple commands, s/he likes to swim so please keep your pool gate locked) and about autism in general. Also include your cell phone and home phone numbers, and ask them to call immediately in the event they ever see your child wandering away from the house or walking the street unaccompanied by an adult. Also, assess your child’s current level of communication. For example, can s/he answer social questions and be understood by novel listeners? Strangers will be most likely to ask your child, “What’s your name?” So it is important that your child can be understood by listeners who don’t know your child. If your child will not be understood or can’t relay enough information, you could use medical identification jewelry, such as a bracelet (e.g., www.medicalert.org).

Safety on vacations. Once your home is secure, vacations may still seem unrealistic. However, there are some steps you can take to allow your family to safely stay in a hotel or space other than the safe haven you have created. When planning for a vacation, really think about your vacation destination and determine the potential risks for your child with autism. Specifically, if your child has a history of wandering (especially towards pools or other swimming areas) you may want to ask for a room furthest from the pool area or without an ocean view-or maybe even choose a location that does not have a pool. When checking into the location, inform the hotel staff about your child and advise them that s/he will require supervision at all times and if they see him/her unsupervised to call you immediately. Also, consider using portable door alarms for hotel rooms, a child-locator systems and/or a global positioning systems (GPS). You can find low-tech tracking devices and high-tech devices online.

Teach skills to increase safety. Lastly, it’s essential to proactively teach your child skills that will increase his/her safety. Work with your child’s school or treatment program to include the important safety goals in your child’s individualized education plan (IEP) such as:

  • responding to “stop”
  • answering questions to provide information
  • responding to name
  • holding hands
  • requesting permission to leave the house
  • requesting preferred items/activities
  • waiting appropriately
  • using a cell phone
  • crossing the street safely (if appropriate given age and level of functioning)
  • seeking assistance when lost
  • cooperating with wearing identification jewelry
  • identifying outdoor boundaries (i.e., not leaving the front lawn)
  • learning clear rules about outdoor play (getting a parent if a stranger approaches, asking for help if ball goes into street)
  • swimming more proficiently
  • learning rules about pool use

Check out www.awaare.org for sample letters to submit to your case manager and attach to your child’s IEP. Finally, it cannot be overstated that children with autism require very close supervision when in harm’s way. We hope you find these proactive and teaching suggestions helpful in minimizing your child’s risk.

Additional toolkits and resources

References

Anderson, C., Law, J.K., Daniels, A., Rice, C., Mandell, D. Hagopian, L. & Law, P. (2012). Occurrence and family impact of elopement in children with autism spectrum disorders. Pediatrics, 130(5), 870-877.

Kiely, B., Migdal, T. R., Vettam, S., Adesman, A. (2016). Prevalence and correlates of elopement in a nationally representative sample of children with developmental disabilities in the United States. PLoS ONE 11(2): e0148337, doi:101371/journal. Pone.0148337

About the Authors

Dr. Bridget A. Taylor, PsyD, BCBA is Co-founder and Executive Director of Alpine Learning Group and is Senior Clinical Advisor for Rethink. Dr. Taylor has specialized in the education and treatment of children with autism for the past twenty-five years. She holds a Doctorate of Psychology from Rutgers University, and received her Master’s degree in Early Childhood Special Education from Columbia University. She is a Board Certified Behavior Analyst and a Licensed Psychologist. She is an Associate Editor for the Journal of Applied Behavior Analysis and serves on the editorial board of Behavioral Interventions. She is a member of the Behavior Analyst Certification Board and serves on the Autism Advisory Group for the Cambridge Center for Behavioral Studies. Dr. Taylor also serves on the Scientific and Community Advisory Board for SPARK a new program at the Simon’s Foundation Autism Research Initiative. Dr. Taylor is active in the autism research community and has published numerous articles and book chapters on effective interventions for autism. She is a national and international presenter and serves in an advisory capacity for autism education and treatment programs both locally and abroad. She has been influential in the development of autism treatment centers both locally and in Italy, India, Canada, France, Australia and Kosovo. Dr. Taylor’s current research interests are in identifying innovative procedures to increase the observational learning repertoires of children with autism.

Kate E. Cerino Britton, EdD, BCBA is a Board Certified Behavior Analyst and a certified teacher of the handicapped, and has worked with individuals with autism since 1997. She is currently the Principal of the education program at Alpine Learning Group. She holds a Masters in Education Administration from Caldwell College and Special Education from Long Island University and a doctoral degree in Educational Leadership, Management, and Policy from Seton Hall University. She serves on the New Jersey Association for Behavior Analysis Board of Directors as the Secretary and Continuing Education Chair and has presented at national and international conferences on increasing socializing, problem solving, small groups and dyad instruction, promoting safety, and augmentative communication.

Pick of the Week: Toilet Training Books – Save 20% this week!

Toilet training can be easier! Toilet Training for Individuals with Autism by Maria Wheeler, MEd, and Toilet Training Success by Frank Cicero, PhD, BCBA, offer toilet training tips and strategies for parents and professionals to implement into their programs using the methods and principles of Applied Behavior Analysis.

Toilet Training for Individuals with Autism presents clear solutions for transitioning children from diapers to underpants, covering how to:

  • gauge readiness
  • identify and reduce sensory challenges
  • overcome anxiety
  • develop habits and routine
  • teach proper use of toilet, sink, toilet paper
  • and more!

 

Toilet Training Success introduces the reader to effective toilet training interventions for individuals with developmental disabilities, including urination training, bowel training, increasing requesting, and overnight training. The manual also addresses when to begin toilet training and how to use positive reinforcement, collect data, and conduct necessary assessments prior to training.

Use our promotional code POTTY20 at check-out this week to redeem your savings on either or both of these manuals!

* Promotion is valid until May 17, 2016 at 11:59pm EST. Offer cannot be applied to previous purchases, combined with any other offers, transferred, refunded, or redeemed and/or exchanged for cash or credit. Different Roads to Learning reserves the right to change or cancel this promotion at any time. To redeem offer at differentroads.com, enter promo code POTTY20 at checkout.

“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.

ASAT_Point1

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.