What Autism Awareness Should be About

In this month’s ASAT feature, Executive Director David Celiberti, PhD, BCBA-D, offer, OPs his thoughts on expanding autism awareness once April has ended. 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!

Autism Awareness Month will soon come to a close. The blue puzzle pieces will disappear from Facebook pages and billboards, the media will focus their attention on other topics of interest, and we will return to business as usual. And business as usual is not OK, particularly given that so many children and adults with autism are not accessing the most effective, science-based interventions that will allow them to realize their fullest potentials.

When I first entered the field over twenty-five years ago, autism was considered a rare condition. When people asked what I did for a living, they often misheard me and thought I worked with “artistic” children. Today, autism is no longer the rare diagnosis that impacts someone else’s child. Our extended families, our neighbors, and our co-workers are now all touched by autism. With 1 in 68 children receiving a diagnosis, the sheer number of individuals with autism is staggering and heightens awareness in and of itself.

For many conditions, awareness is key because awareness promotes detection, and with detection comes a relatively clear path towards treatment. Take, for example, conditions such as Lyme disease and many forms of cancer. Better prognoses are attached to early detection. Within a few short weeks of detection and diagnosis, patients typically receive science-based treatment. If their conditions are not detected early, then access to such treatments is delayed and their conditions will likely worsen. In the world of autism, detection is not the “be all and end all.” We do not just have a detection issue in autism, but also, and perhaps more importantly, we have an intervention issue.

It is my hope that the conversation about autism awareness will be broadened to focus upon and overcome the obstacles that separate individuals with autism from effective, science-based intervention, and that those that separate their families, caregivers, and teachers from accurate information about autism intervention.

I leave you with 10 ideas about what “autism awareness” should be about.

  1. “Autism Awareness” should recognize the need to differentiate effective treatments that are scientifically validated from the plethora of “therapies” and “cures” lacking scientific support. Autism treatment has become a multi-million dollar industry with 500+ alleged treatments and thus, science sadly placed on the back burner. This means that heart wrenching testimonials, surveys that are pawned off as scientific research, and outrageous claims abound, making it challenging for parents to determine the best course of action for their child. The aggressive marketing of these “therapies” and “cures” is absolutely overwhelming for parents who are desperate for accurate information to help their children realize their fullest potential. For most other medical conditions, a provider that disregards proven intervention and uses a fringe treatment may actually be sued for malpractice. Such safeguards are not yet well established for autism treatment.

 

  1. “Autism Awareness” must recognize the responsibility that we have, as a society, to make sound choices.I use the term “society” given the myriad of stakeholders who make critically important decisions for persons with autism – not just parents, but siblings, teachers, treatment providers, administrators, program coordinators, elected officials and even tax payers. Decision-making power comes with tremendous responsibility. There are far too many individuals with autism who are not receiving 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.   Choices made have profound implications.

 

* Please see the questions that appear at the end of this article to promote more careful decision making at http://www.asatonline.org/pdf/roadless.pdf

 

  1. “Autism Awareness” must recognize that available information (and information providers) varies greatly in accuracy.As we know, not all information on the Internet is reliable and accurate. Often Internet information is deemed equivalent in relevance, importance, and validity, to research published in peer-reviewed scientific journals. It is not.

 

  1. Autism Awareness” must include careful and responsible reporting by journalistsThere are dozens of “miracle cures” and “breakthroughs” for autism that receive widespread media attention, even if they have not been proven effective. Unfortunately, treatments actually shown to be effective typically receive the least amount of media attention. It is hard to imagine that things will improve dramatically for the autism community in the absence of more accurate representations of autism treatment in the media.

 

* You will find examples of accurate and inaccurate reporting at http://www.asatonline.org/for-media-professionals/about-media-watch/ ASAT is undertaking proactive steps to enhance accuracy in media reporting.

 

  1. “Autism Awareness” should recognize the critical need for newly diagnosed children to access effective treatment as soon as possible.We also know that we have a limited window of time to prepare children for the least restrictive setting once they enter public school. The fact that resources allocated early can save a tremendous amount of resources over an individual’s lifespan does not always enter the conversation when evaluating costs and benefits. That must change.

 

  1. “Autism Awareness” should also instill hope for a better tomorrow for those individuals who are not part of the “best outcome” group.With the right treatment, individuals with autism can lead happy and fulfilling lives. Research indicates that interventions such as applied behavior analysis (ABA) can effectively help children and adults with autism realize their fullest potential. The conversation about “cure” often delegitimizes and derails important conversations about how we can help individuals with autism live and work independently, develop meaningful and sustainable relationships, reduce challenging behaviors that may limit opportunities, access faith communities, and enjoy the array of recreational pursuits that are available within their communities. Those are important conversations to have.

 

  1. “Autism Awareness” must mandate accountability from all treatment providers. Accountability involves a shared commitment to objectively defined targets, data collection, and respect for the scientific method. It is every provider’s responsibility to objectively measure outcomes regardless of their discipline. No one should get a pass on accountability. No one is immune from defining their target and objectively measuring progress. No one should get away with implementing their intervention carelessly and in no-transparent manner. No one should be permitted to boast claims that they cannot demonstrate through data. These unfortunate realities should not be tolerated.

 

  1. “Autism Awareness” must involve recognition that an abundance of clinical research already exists.Too often the plethora of peer-reviewed research that could guide and inform treatment efforts is disregarded altogether. If treatment providers and consumers are interested in published research on diverse topics such as improving conversation skills, promoting academic skills, eliminating pica, or developing tolerance for dental procedures, they can find it. Thousands of researchers have worked hard at publishing their findings in peer reviewed journals and their findings are often overshadowed by a media that practices sensationalism to provide consumers with information about the “next big thing” in autism treatment.

 

  1. “Autism Awareness” should help us identify and overcome the barriers that face our families everyday.Not every child with autism is invited to birthday parties. Not every faith community welcomes families of children with autism. Not every school provides meaningful contact between students with autism and their typically developing peers. Not every community provides recreational opportunities for individuals with autism. The absence of these opportunities is both a function of misinformation about autism and the lack of awareness about the successful efforts of others who have overcome such barriers. With 1 in 68 children being diagnosed, every facet of society would benefit from evaluating what they are doing, what they are not doing, and what they could be doing differently.

 

  1. “Autism Awareness” should be about the reality that the hundreds of thousands of children with autism will soon become hundreds of thousands of young adults with autism. We are facing a crisis in the field with a scarcity of services for adults with autism and the absence of a clear strategy for closing the gap between the ever increasing need, and an unprepared supply of resources. The Association for Science in Autism Treatment has committed to broadening its scope to be a part of an important dialogue about adults with autism.

We all play a role in bettering the lives of individuals with autism and helping their families and supporters become skilled and savvy consumers. Embrace that role with an eye toward identifying what additional steps you can take to become a contributor to important conversations and an even bigger part of the solution.

 


David Celiberti, PhD, BCBA-D, is the part time Executive Director of ASAT and Past-President, a role he served from 2006 and 2012. He is the Co-Editor of ASAT’s newsletter, Science in Autism Treatment. He received his PhD in clinical psychology from Rutgers University in 1993. Dr. Celiberti has served on a number of advisory boards and special interest groups in the field of autism, applied behavior analysis, and early childhood education, and been an active participant in local fundraising initiatives to support after school programming for economically disadvantaged children. He works in private practice and provides consultation to public and private schools and agencies in underserved areas. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. In prior positions, Dr. Celiberti taught courses related to applied behavior analysis (ABA) at both the undergraduate and graduate levels, supervised individuals pursuing BCBA certifications, and conducted research in the areas of ABA, family intervention, and autism.

Preventing Bullying of Students with ASD

Did you know that October is National Bullying Prevention Month? In an effort to raise awareness around issues of bullying for students with autism, we’re honored to feature this article on preventing bullying of students with ASD by Lori Ernsperger, PhD, BCBA-D, Executive Director of Behavioral Training Resource Center, on some tips and information for parents on protecting their children from disability-based harassment in school. 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!


We have a nine-year old daughter with ASD who started 3rd grade in a new school. She is coming home every day very upset due to other students calling her names and isolating her from social activities. We wanted her to attend the neighborhood school but how can we protect her from bullying?

Answered by Lori Ernsperger, PhD, BCBA-D

Unfortunately, bullying and disability-based harassment is a common issue for individuals with ASD. As parents, you have a right to insure that the school provides a multitiered framework of protections for your daughter to receive a free appropriate public education (FAPE) in the least restrictive environment and free from disability-based harassment. Start with educating yourself on the current legal requirements and best practices for preventing bullying in schools.

Preventing Bullying of Students with ASD

Recognize
Recognizing the startling prevalence rates of bullying for students with ASD is the first step in developing a comprehensive bullying and disability-based harassment program for your daughter. According to the Interactive Autism Network (IAN, 2012), 63% of students with ASD were bullied in schools. An additional report from the Massachusetts Advocates for Children (Ability Path, 2011) surveyed 400 parents of children with ASD and found that nearly 88% reported their child had been bullied in school. According to Dr. Kowalski, a professor at Clemson University, “because of difficulty with social interactions and the inability to read social cues, children with ASD have higher rates of peer rejection and higher frequencies of verbal and physical attacks” (Ability Path, 2011).

In addition to recognizing the prevalence of bullying of students with ASD in schools, parents must also recognize the complexities and various forms of bullying. Bullying of students with ASD not only includes direct contact or physical assault but as with your daughter’s experience, it can take milder, more indirect forms such as repeated mild teasing, subtle insults, social exclusion, and the spreading of rumors about other students. All adults must recognize that laughter at another person’s expense is a form of bullying and should be immediately addressed.

Finally, recognizing the legal safeguards that protect your daughter is critical in preventing bullying. Bullying and/or disability-based harassment may result in the violation of federal laws including:

  1. Section 504 of the Rehabilitation Act of 1973 (PL 93-112)
  2. Title II of the Americans with Disabilities Act of 2008 (PL 110-325)
  3. The Individuals with Disabilities Education Improvement Act (IDEA) of 2004 (PL 108-446)

The Office of Civil Rights (OCR), along with the Office of Special Education and Rehabilitative Services (OSERS), have written guidance letters to all schools to clarify that educational institutions are held legally accountable to provide an educational environment that ensures equal educational opportunities for all students, free of a hostile environment. Any parent can access and print these Dear Colleague Letters and distribute them to school personnel working with their child.

  • US Department of Education/Office of Civil Rights (October 2014)
  • US Department of Education/Office of Special Education and Rehabilitative Services (August 2013)
  • US Department of Education/Office of Civil Rights (October 2010)
  • US Department of Education (July 2000)

Continue reading

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

Productive Meetings in Home ABA Programs

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.

Productive Meetings in Home ABA ProgramsDevelop 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.

Continue reading

Elopement and Neighborhood Safety

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

Elopement and neighborhood safety

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.

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.

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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