Category Archives: Q&A

Explaining Decision to Use Science-based Autism Treatments

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This month’s ASAT feature comes to us from David Celiberti, PhD, BCBA-D and Pamela Feliciano, PhD. 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 have decided to rely on science-based treatments for my child with autism. Now, how do I explain this to friends and relatives who insist I try something “cutting edge?”

 

We certainly respect any individual’s right to his or her own opinion, and certainly for parents of children with autism to make decisions for their child regarding treatment; however, we believe that scientific evidence and the use of objective data should guide treatment options for all diseases and conditions, and autism is no exception. The late Senator Patrick Moynihan eloquently said, “Everyone is entitled to their own opinions, but not their own facts.” It is simply a matter of fact that theories, hypotheses, and testimonials do not provide adequate information to guide treatment decisions.

When friends or acquaintances hear about our experiences with autism, quite often the first thing they ask is, “What is your opinion of vaccines?” despite the retraction of Andrew Wakefield’s article by the Lancet (a very rare occurrence by this highly reputable journal). Sadly, the vaccine debate has long distracted the autism community from important discussions such as how best to help children already diagnosed with autism realize their fullest potential and live a happy and meaningful life.

In an ideal world, all treatment providers would make a commitment to science and evidence-based practices, and all members of the journalism community would make a commitment to responsible journalism. Until these ideals become the norm, those who do understand science-based treatments must do what they can to inform and educate others about the benefits of scientifically validated treatment, and the use of data to guide decision-making when assessing the benefits of any and all treatments.

Although applied behavior analysis is the treatment for autism with the most scientific support, we are rarely ever asked our opinion of this therapy, or if it is effective. Instead, every few months or so, some “new” treatment (or “repackaging” of a known treatment) will gain the attention of consumers. Given the large numbers of television reports, newspaper articles, blogs, and websites putting forth “miracle cures” and “breakthroughs,” it is not surprising that parents frequently receive advice and suggestions from extended family members, neighbors, and co-workers, particularly after a news item is broadcast, printed, or otherwise disseminated. Many of these individuals have the best intentions and are eager to share what they believe is “cutting edge” information about autism. In other cases, the advice is sometimes provided in a manner that comes across as critical of what you are choosing to do or not do for your child (i.e., it may be implied that you are not doing enough as a parent to help your child with autism).

If the information is offered by a more casual acquaintance, it may be best to simply thank him or her for their interest and concern and move on; however, such a strategy may not fare as well with individuals with whom you have a closer relationship. In these cases, you might consider sharing the following:

     • There are dozens of “miracle cures” and “breakthroughs” (i.e., pseudoscience) for autism that manage to receive widespread media attention, even if they have not been proven effective. In fact, there are over 500 treatments touted to address autism;

     • It is important to be critical of all available information, regardless of the source, and to recognize that not all information on the Internet is reliable and accurate;

     • There is a large body of scientific research published in peer-reviewed journals and carried out by hundreds of researchers that supports the choices that you have made;

     • Numerous task forces (some are listed at the end) have looked closely and objectively at the available research and have determined that the vast majority of autism treatments lack any scientific support and, in fact, some may be harmful;

     • Autism treatment is a multi-million dollar industry, and many treatment proponents rely heavily on sensationalism and extraordinary claims to “sell” their products;

     • Interventions that are actually shown to be the most effective often receive the least amount of media attention; and

     • For most other medical conditions, a provider that disregards proven intervention and uses a fringe treatment may actually be sued for malpractice (you may even consider drawing an analogy to a medical condition of particular interest to the person providing the advice).

Of course, you may also consider addressing this matter proactively. This would involve clarifying your choices and commitment to science-based treatment to more significant family members and friends on your terms and at your convenience. It may be helpful to view this tactic as a series of tiny conversations. You may even consider sharing links to websites such as the Association for Science in Autism Treatment (ASAT), which will help your family members and friends separate the wheat from the chaff. We would like to draw your attention to a few sections of ASAT’s website that bear relevance to this discussion.

     • Learn more about specific treatments

     • Summaries of published research articles

     • Making sense of autism treatments: Weighing the evidence

     • Recommendations of expert panels and task forces

Finally, ASAT’s newsletter, Science in Autism Treatment, is a free publication, so encourage your friends and family to subscribe.

It is our hope that the information shared above may help your friends and family better understand the role that science should play in the treatment of autism, the need for objective data to drive decision making, how to better identify pseudoscience, and perhaps most importantly, why parents must be such savvy consumers.

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.

Pamela Feliciano, PhD, joined the Simons Foundation in 2013 and serves as the scientific director of SPARK (Simons Foundation Powering Autism Research through Knowledge) and is a senior scientist at SFARI. SPARK is a SFARI initiative that seeks to accelerate autism research through a vibrant and informative online platform (SPARKforAutism.org). Previously, Feliciano worked as a senior editor at Nature Genetics, where she was responsible for managing the peer review process of research publications in all areas of genetics. Feliciano holds a B.S. from Cornell University, an M.S. from New York University and a Ph.D. in developmental biology from Stanford University. Feliciano is also the mother of an adolescent boy with autism spectrum disorder.

Discussing Autism with Newly Diagnosed 9 Year Old

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This week’s blog comes to us from clinical psychologist Lauren Elder and was originally posted on Autism Speaks as part of their Got Questions? series.

“Our son, age 9, was recently diagnosed with autism. He knows something’s up, but we’re not sure how to explain. Advice?”

Yours is a difficult situation shared by many parents. Children need to understand what’s going on, but the discussion needs to be appropriate for their age and level of development. Your openness will help your child feel comfortable coming to you with questions.

I recommend a series of ongoing conversations rather than a one-time discussion. Here are some tips for starting the conversation and preparing some answers for questions that your son may ask:

Explain autism in terms of your child’s strengths and weaknesses
You may want to focus on what he’s good at, and then discuss what’s difficult for him. You can explain that his diagnostic evaluation provided important information on how to use his strengths to meet his challenges. Focus on how everyone has strengths as well as weaknesses. Give some examples for yourself, his siblings and other people he knows.

Provide basic information about autism 
Depending on your son’s maturity and understanding, you may want to continue by talking about what autism means. (See our “What Is Autism?” webpage.) You want to give your child a positive but realistic picture.

It may help your son to hear that autism is common and that there are many children like him. This can open a discussion about the strengths and challenges that many children with autism share. You might likewise discuss how individuals with autism tend to differ from other children.

For instance, you might explain that many children with autism are very good at remembering things. Some excel at building things or at math. Also explain that many children with autism have difficulty making friends and communicating with other people.

Don’t make everything about autism
It’s important to emphasize that your son’s autism-related strengths and challenges are just part of who he is and why you love him. Be sure to point out some of those special qualities that have nothing to do with his autism. This will help your child understand that autism is something that he has, not the sum total of who he is.

Assure your child of support 
Explain to your son why he’s receiving the services he’s getting. For instance, you could tell him that he sees a speech therapist to help him communicate more clearly, or that he’s seeing a behavioral therapist to improve how he makes friends. Help him understand how you, his therapists and his teachers all want to help him. You can point out that we all need some help to become the best we can be. Some children need extra help learning to read. Some get very sad and need help in that department, etc.

Expect to repeat these conversations!
All children – and especially those with autism – need to hear some information multiple times. This doesn’t mean he doesn’t understand. what you’ve told him. Rather, revisiting these topics can be an important part of his processing the information.

Find role models and peers
It’s important for children with autism to spend time with typically developing peers. However, for children your son’s age and older, it can be a wonderful experience to spend time with other children on the autism spectrum. Consider enrolling your son in a play group or social skills group specifically for children with autism.

 

Teaching Adaptive Skills

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In this months’s ASAT feature, Diane Adreon, EdD answers a question about what to consider when helping a child gain independence. 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!

This article was originally published in ASAT’s free quarterly newsletter.

We are older parents and often lay awake at night worrying about our daughter’s ability to function independently when we are no longer able to care for her ourselves. She is 17 years old and is becoming more and more independent. We have read the “Hidden Curriculum” and that resource has opened our eyes to subtle social skills that may be missing in her repertoire. Are there adaptive skills that my wife and I should be considering that are often overlooked?

Individuals with autism spectrum disorders (ASD) typically have an uneven profile of skills (Ehlers et al., 2007). Regardless of cognitive ability, individuals with ASD often have difficulty with independent living skills. In fact, in many cases, areas of strength can mask significant deficits in adaptive skills. Adaptive behaviors are a reflection of the way an individual applies his or her cognitive skills in actual life situations. Research has shown that individuals with ASD have significantly lower adaptive behavior functioning than their measured cognitive abilities (Klin et al., 2007; Lee & Park, 2007; Mazefsky, Williams, & Minshew, 2007; Myles et al., 2007). This suggests that, no matter the individual’s level of functioning, we need to focus on teaching adaptive skills.

When identifying what skills to teach, it is important to remember that goals should be individualized. Some questions to ask in identifying goals for your daughter include:

  • Is the skill a reasonable one to teach given her age and her opportunities to perform the skill?
  • Will she be transitioning to a new environment in the next few years? If so, what skills will she need to be successful in that environment?
  • If your daughter is currently in a program that can address daily living skills, can the goals be formalized making them a part of her IEP or IHP?

The Adaptive Behavior Assessment System- Second Edition (ABAS-II; Harrison & Oakland, 2003), Scales of Independent Behavior-Revised (SIB-R; Bruininks, Woodcock, Weatherman, & Hill, 1997), or the Vineland Adaptive Behavior Scales- Second Edition (VABS-II; Sparrow, Cicchetti, & Balla, 2005) are all adaptive behavior assessment instruments that can yield information helpful in identifying goals. Although the overall scores will provide a global picture of your daughter’s adaptive skills, going over the specific items on the protocol will provide substantially more useful input in the identification of goals.

The science of applied behavior analysis (ABA) provides numerous strategies to assist in teaching skills. Baseline data supply information on current skill levels and can help identify target behaviors. A task analysis assists in breaking down complex tasks into smaller components and behavior chaining procedures can help determine which steps to teach first. In addition, behavioral shaping procedures and carefully constructed prompting hierarchies can help ensure that we are teaching skills in the most efficient and effective manner. Moreover, identifying reinforcers and using data to determine schedules of reinforcement can address motivational issues. Finally, teaching strategies to address generalization challenges can increase the likelihood of the individual learning to perform the skills in a variety of situations.

Since the scope of skills associated with independence is quite broad, the remainder of this response will focus on some adaptive skills that are often overlooked. When such skills are taught to individuals with ASD, they can become more independent.

Teach safe and practical money skills. When making purchases out in the community, it is a good idea to not “show” others how much money you have. Therefore, consider teaching your daughter practical strategies such as getting her money out of her wallet ahead of time, counting her money in her wallet and taking out just the amount of money she needs for a purchase. You may also want to teach her to make purchases using a debit card and the protocol for withdrawing money at an ATM. This includes teaching her to maintain an appropriate amount of space between her and others in the ATM line, putting the money into her wallet before walking away from the ATM, and so forth. It cannot be overstated that practice is essential for learning any of these skills. Some ways you can create more opportunities for your daughter to practice these skills include establishing a bank account and giving her a check for her allowance; thereby creating a reason for her to learn how to make deposits and withdrawals from an ATM. You can also have her practice making deposits and withdrawals inside the bank with a teller.

Teach your daughter to use a calendar to track upcoming events. For most of us, the number of things we need to remember increases significantly when entering adulthood. In addition, some of what we may need to remember occurs only periodically, and outside of our daily routines, thus it can be much harder to rely on one’s memory in those instances. Depending on your daughter’s level of functioning, your primary goal might be having her check her schedule to see what is happening that day or to prepare her for upcoming events and activities. In other instances, you can work with her on marking a calendar with upcoming events or reminders (e.g., return library book at school, swimming at Jake’s – bring swimming suit) and reviewing them daily. Teach her to get in the habit of referring to the calendar for information. Individuals with ASD need practice to use visual resources.

Teach your daughter to create and use her own to do list. Remember, a to-do list can use any kind of visual or cue so that your daughter understands what to do. Individuals of all functioning levels can learn to follow a to-do list if it is written at the appropriate level (may use pictures instead of words) and they have been taught to refer to it and do each task independently. For some, you may want to start early in having them write or type their to do list and learn to refer to it and check things off when done. It is also a good idea to help them identify and build in preferred activities to reinforce “work before play.”

Teach your daughter to take medication independently. Most of us use visual cues or create a routine to remind us to take our medication, so work to establish similar ones for your daughter. If the medication regime is complicated, consider using a weekly pill box and organizing the medication on Sundays. Or perhaps you have a visual reminder present at the breakfast table that says, “Take medication.” In some instances, this might mean having the medication bottle or pill box on the breakfast table. Establish the routine of having your daughter take the medication right before breakfast (if the prescription allows) as this will decrease the likelihood that she will forget it. Once you have introduced this routine, decrease your verbal reminders to take the medication and direct her attention to the visual reminder. If she has a smart phone, you can also teach her how to set up a daily reminder to take the medication at specific times.

Hopefully these suggestions and examples of possible targets have provided you with a few additional ideas on ways to ensure your daughter continues to make progress towards greater independence. Assessment of her skills across a number of domains (home, community, health, safety, and work) as well as reviewing her individual goals and progress on a regular basis can ensure an ongoing conversation about priority adaptive skills to help her continue moving\ forward. It does take time and practice, but the pay-off is worth it in the long run.

References

Bruininks, R. Woodcock, R., Weatherman, R., & Hill, B. (1997). Scales of Independent behavior-Revised. Rolling Meadows, IL: Riverside Publishing.

Ehlers, S., Nyden, A., Gilllberg,C., Sandberg, A. D., Dahlgren, S., Hjelmquist, E., & Odén, A., Jr. (1997). Asperger Syndrome, autism, and attention disorders: A comparative study of the cognitive profiles of 120 children. Journal of Child Psychology and Psychiatry and Allied Disciplines, 38, 207-217.

Harrison, P. L., & Oakland, T. (2003). Adaptive Behavior Assessment Systems (2nd ed.). Minneapolis, MN: Pearson Assessment.

Klin, A., Saulnier, C. A., Sparrow, S. S., Cicchetti, D. V., Volkmar, F. R., & Lord, C. (2007). Social and communication abilities and disabilities in higher functioning individuals with autism spectrum disorders: The Vineland and the ADOS. Journal of Autism and Developmental Disorders, 37, 748-759.

Lee, H. J., & Park, H. R. (2007). An integrated literature review on the adaptive behavior of individuals with Asperger syndrome. Remedial and Special Education, 28, 132-139.

Mazefsky, C. A., Williams, D. L., & Minshew, N. J. (2008). Variability in adaptive behavior in autism: Evidence for the importance of family history. Journal of Abnormal Child Psychology, 36, 591-599.

Myles, B. S., Lee, H. J., Smith, S. M., Tien, K., Chou, Y., Swanson, T. C., & Hudson, J. (2007). A large scale study of the characteristics of Asperger syndrome. Education and Training in Developmental Disabilities, 42, 448-459.

Sparrow, S., Cicchetti, D. & Balla, D. (2005). Vineland Adaptive Behavior Scales (2nd ed.). Minneapolis, MN: Pearson Assessment.

About The Author

Dr. Adreon is the associate director of the University of Miami-Nova Southeastern University for Autism & Related Disabilities (UM-NSU CARD). She also has a private consulting practice specializing in high-functioning autism spectrum disorder (www.spectrumlifestrategies.com, Info@spectrumlifestrategies.com)

 

 

 

Tip Of The Week: Food Selectivity

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In this month’s ASAT feature, Jill K Belchic-Schwartz PhD offers helpful hints for assessing and treating food selectivity. 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 behavior analyst working with a 6-year-old child with a very limited food repertoire. Do you have any assessment and treatment recommendations that can guide my efforts to address this area?

Food selectivity is a fairly common issue with children who have an autism spectrum disorder (ASD). Many children who have been diagnosed with an ASD have difficulties with rigidity and a need for sameness, and this holds true for their food preferences as well. This can be very distressing for parents and caregivers.

Prior to initiating a feeding intervention, it is important to rule out any underlying medical conditions that may be perpetuating the child’s feeding difficulties. Common medical concerns include gastroesophageal reflux disease (GERD) and/or food allergies or intolerances. Any underlying medical issues should be treated prior to implementing a feeding program. Once any medical treatment is underway, you can begin to tackle the child’s food selectivity from a behavioral standpoint. If a multidisciplinary feeding clinic is nearby, encourage the parents of the child with whom you are working to consider scheduling an appointment for him/her to be evaluated.

When treating any child with food selectivity, the first step is to take a very detailed feeding history. Ask about the child’s first experiences with breast or bottle feeding, transitioning to baby food and how they handled the transition to more highly textured foods. Get a current detailed feeding diary. It is also very important to gather information about the setting in which the child eats. Does he sit at the kitchen table for all meals or is he allowed to graze throughout the day? Are mealtimes predictable and do they occur at regularly scheduled intervals and at the same time each day? Is the child “brand specific” and eat only a specific brand of food? Will the child eat only one flavor (e.g., strawberry/banana yogurt)? How is the food presented? How long is a typical meal? What are the child’s refusal behaviors? The more specific the information the better!

There are a variety of techniques available that can be helpful in expanding a child’s food repertoire. However, in order to identify the most appropriate treatment, you must first understand the etiology of the selectivity. For instance, is the child’s food selectivity due to a frank refusal to try all new foods or is it due to a failure to progress to more advanced food textures? The food refusal behavior may look the same (e.g., screaming, hitting, spitting out food, etc.), but the treatment would be quite different based on this information.

Once you are satisfied with your assessment, treatment can begin. Try to stick to a daily predictable schedule of meals and snacks and eliminate grazing/snacking in between meals. Hunger can be a powerful motivator! It is also important to limit the child’s access to liquids in between meals, as some children prefer to drink rather than eat. Set a 15-20 minute time limit for meals. When introducing new foods for the first time, it is usually helpful to start with a “formerly preferred food,” that is, a food that the child used to eat or a food that is similar in taste/texture to something he currently eats.

When presenting the “new” food to the child, start with a very small bite of the new food (e.g., sometimes as small as a pencil point) so as not to overwhelm the child and to ensure a greater likelihood of success. Some feeding therapists use the child’s preferred food as a “reward” for eating the “non-preferred” food, while others use toys/activities as a reward for tasting the new food. What works for one child may not necessarily work for another. Therefore, in order to find the most salient motivators, several different options will likely need to be explored. Additionally, reward systems may need to be changed periodically in order to maintain their effectiveness.

When introducing new foods to a child, it is often easier to start with naturally occurring pureed or smooth foods first (e.g., yogurt, applesauce). The reasoning behind this suggestion is that once the child accepts a bite of pureed food into his mouth, swallowing it is almost guaranteed. With a piece of chopped food, the child may accept the bite into his mouth, but chewing and swallowing may not necessarily occur, and the child may expel the food. For instance, suppose you are introducing fruits and/or vegetables to a child who eats only carbohydrates. The child is more likely to demonstrate success with a one-fourth teaspoon of applesauce than he or she would with a bite of an actual apple. Once the child is accepting a ¼ teaspoon of applesauce consistently (e.g., nine out of ten opportunities), you can begin to increase the bite size to ½ teaspoon. Moving along in a systematic and stepwise fashion ensures a greater likelihood of success. Additional foods can be introduced in a similar fashion once the child is eating a reasonable volume of the new food.

Food selectivity is just one example of feeding problems that may be experienced by children on the autism spectrum. These difficulties often pose a significant challenge to parents, as nourishing our children is expected to be one of the easier, and more enjoyable, tasks of parenthood. Help is available for parents experiencing this challenge, and behavior analysts are a great resource for assessing and treating these disorders because of their specific skill sets in understanding behavior and motivation. For more detailed information, a great resource is, “Treating Eating Problems of Children with Autism Spectrum Disorders and Developmental Disabilities” by Keith E. Williams and Richard M. Foxx.

References

Williams, K. E. & Foxx, R. M. (2007). Treating Eating Problems of Children with Autism Spectrum Disorders and Developmental Disabilities. New York, New York: Pro-Ed Inc.

Please use the following format to cite this article:

Belchic-Schwartz, J. (2011). Clinical corner: Food selectivity. Science in Autism Treatment, 8(3), 11-12.

About The Author

Jill K. Belchic-Schwartz, PhD is a Licensed Psychologist who received her Doctorate in Clinical Psychology from Rutgers University in 1995. Dr. Belchic completed her pre-doctoral internship in pediatric psychology at The Children’s Hospital of Philadelphia (CHOP), where she remained on staff­ for seven years. While at CHOP, she co-directed the Regional Autism Center and was a Program Manager in The Feeding and Swallowing Center. Dr. Belchic’s specialty areas include early assessment of developmental diff­erences, including language delay and diagnosis of autism spectrum disorders (ASD). She also provides psychoeducational assessments for children/adolescents who are struggling in school. She provides community-based consultation and treatment for kids with a variety of psychosocial issues. Dr. Belchic has been in private practice since 2004 and is a partner in Childhood Solutions, PC.

Medication Considerations

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What do you do when your doctor recommends medication? In this month’s ASAT feature, Megan Atthowe, RN, MSN, BCBA, offers insight on a variety of approaches parents can take when medication is recommended for children exhibiting aggressive behaviors. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

My son with autism has developed aggressive behavior, and his doctor is considering whether medication could help. What can I do to prepare for this conversation?
Answered by Megan Atthowe, RN, MSN, BCBA

First, you should know that there is no medication that specifically treats autism. Medications approved by the United States Food and Drug Administration (FDA) for other conditions can be useful only to lessen symptoms. That said, off-label use of pharmaceuticals is by no means unique to autism and is common practice for many health conditions. So while research on the use of particular psychotropic medications in the autistic population is growing, our body of knowledge is still limited. In addition, medications can and do affect every individual differently, and children can respond differently as they develop, so it is likely to take time to find the best medication at the appropriate dose. Medication management, in other words, is a complex and an ongoing process and one that is highly individualized. It is a good idea, then, to be prepared with the right information before every visit to your health care provider.

Do you know how often the aggression actually occurs? Bringing data like this to the visit can be very helpful. You may want to ask your son’s teachers to share any information they have about the aggression with your health care provider, too. (They would need your consent to talk with him/her or to share any confidential information such as behavior data.) If you have not been keeping track of the aggression, now is a good time to start, even if there are only a few days until your visit. An easy way to do this is to use a calendar. Record specifics about when the aggression happens, what the behavior is like, how long it lasts, and whether you have noticed any recent changes. It is difficult for anyone to recall these details accurately, especially if the behaviors happen frequently, so writing them down will help you to share the most meaningful information you can with your health care provider. If your son’s school team is not already collecting data, perhaps they should start as well.

In addition to information about the current levels of the behavior, be prepared to describe how the school and your family are addressing the behavior and how long that plan has been in place. Has your son’s team considered or tried Applied Behavior Analysis (ABA) to treat the behavior? Research supports ABA as an effective intervention for decreasing problem behaviors such as aggression as well as for teaching children with autism new skills. It is important to be sure that a qualified behavior analyst is supervising any ABA interventions, as they must be implemented correctly to be effective. Your health care provider may be able to refer you to a local ABA provider, or you can find a list of board certified behavior analysts at the Behavior Analysis Certification Board’s website.

Before your visit, prepare a list of the names and doses of any medications your son takes, as well as any over-the-counter medications, vitamins, or other supplements. If your son receives other therapies, share what they are with your health care provider. He or she will want to ensure that any new medication is safe to take and will not interact with other medications.

If you and your health care provider decide to start your son on a medication, decide what the goal is. How will you know when the medication has been effective? How will you know if it is ineffective? Be specific and write the goal down. Schedule a date when you will check in with your health care provider on your son’s progress. He or she may have specific suggestions about what type of data to keep.
Finally, there are some important questions that you should have the answers to before you leave. Make sure that you ask any questions you have—a responsible health care provider will want to know that you understand how to use the new medication correctly. If you think of questions later, do not hesitate to call and ask your physician, nurse, or pharmacist.

Key Questions:

  • What is the name of the medication?
  • What is the medication used for?
  • When and how should I give it to my son, and how much do I give?
  • Should I give this medication with food?
  • What effects should I expect to see?
  • What are common side effects?
  • How long will it be until I notice the desired effects and side effects
  • What side effects are serious, and what should I do if I notice them?
  • Will side effects lessen over time?
  • Is there anything I should avoid giving my son while he is on this medication?
  • If I decide that I would like to stop giving him the medication, what should I do?
  • What should I do if I miss a dose?

Please note that there is information about research related to medications elsewhere on the ASAT website.

ABOUT THE AUTHOR

Megan Atthowe, MSN, RN, BCBA, LBA, is a registered nurse and behavior analyst who has worked with people with autism and other special needs in educational, home, and healthcare settings for over 15 years. Currently she consults to educational teams who serve students with autism in public schools.

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

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

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

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

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

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

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

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

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Interview with Lisa Carling, Director of the Theatre Development Fund’s Accessibility Programs

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Lisa Carling is the Director of the Theatre Development Fund’s Accessibility Programs in New York City. Recently, she sat down to speak with BCBA Sam Blanco about their Autism Theatre Initiative. TDF’s next autism-friendly performance will be The Lion King on Sunday, September 27, 2015 at 1PM. The Lion King was the first autism-friendly performance TDF organized back in October 2011, and has been so popular that it is now an annual event each fall at the end of September. Read on for Lisa Carling’s inside scoop on the Autism Theatre Initiative!

SAM BLANCO: Tell me a little bit about how the Autism Theatre Initiative came about.

LISA CARLING: It came about because we had a very successful program for students in the District 75 schools who had hearing loss and vision loss. We would schedule Wednesday matinee performances of Broadway shows, and bring these kids with their teachers to see Broadway performances. We were hearing more and more from special ed teachers, “This is great, but what can you do for all the kids in the District 75 schools that are on the autism spectrum.” We didn’t know, because the more we talked to parents, educators, therapists, the more we realized that this population would probably benefit more from a designated performance, being able to come to a show and be themselves. It wouldn’t be fair to mix them with typical audiences that may not understand atypical behavior. We also realized from talking with parents that they’re very few opportunities for families to do something together if you have a child or adult on the spectrum, what can you do together with siblings, grandparents, aunts and uncles. So we wanted to create an opportunity for families to come to the theatre together and have a terrific time in a judgment-free, welcoming environment where the children or adults on the spectrum could just be themselves, and the parents and siblings would not have to explain a thing. Anything goes. No judgments.

SB: Do you feel that judgment-free aspect is what has really drawn people in?

LC: I do. We’re very careful with the material, what productions we choose. We go after what most families want to see, family-friendly productions, big musicals, easy storylines, colorful costumes, dancing and singing, what everyone loves. And then we will ask the production if they are able to make slight modifications in sound and lighting. We rely on specialists in the autism community who can come and take a look at a production and then say, here are maybe a dozen places where it would really be beneficial if the sound could be turned down a level, we usually say not above 90 decibels, or the lighting is just too intense. We always stress when we talk to a show that these are suggestions and if they can make them that would be great. If not, we will warn the parents ahead of time at point-of-purchase. And we always emphasize we want it to be the same great show, the same terrific Broadway musical that families all over the country want to see when they come to New York.

We tried something different in December by doing a play for the first time, The Curious Incident of the Dog in the NightTime. We were very leery of that. We didn’t know what it would be like for families to come and see a serious drama, albeit with very funny moments in it, about situations that they may live with 24/7. But it was an opportunity to stretch our expectations and to offer something newer to the autism community, to identify older people in the community, college-aged students on the spectrum, older adults.

SB: What was the response to that?

LC: It was unbelievable. It was very moving to all of us. The cast, every cast member, had tears in his eyes at the curtain call. And there was a very moving moment at the end of the play, where Christopher, after he’s told his teacher all the things he’s accomplished: he found his mother, he wrote a book, he solved the mystery of who murdered Wellington, and he says something to the effect, he asks her, “This means I can do anything, can’t I?” And he asks her three times, and that question just hangs there unanswered by the teacher. But for our autism-friendly performance, there was a teenager who shouted right back at him, “yes, you can!” And it was such an affirmation of the impact of that show on this audience.

There was a time when we would have shied away from offering a performance where there was strong language in it, or violence. There’s a scene where the father strikes his son. The show worked with us on that and it was choreographed in a different way. It was more suggestive and not as startling. But we did it. And we’re not afraid anymore to just put opportunities out there. Parents know their kids the best, and if they think their child or adult can’t handle something then they’ll let us know or they won’t buy tickets.

SB: Are you involved with other theatres who are putting on autism-friendly performances?

LC: This year’s National Autism Theatre Initiative advisory partnerships varied in scope from Stages St. Louis’s 235 seat Playhouse at Westport Plaza in Chesterfield, MO that offered a sensory-friendly performance of The Aristocats in June for groups of school children on the spectrum in the St. Louis area; to The Big Apple Circus in Brooklyn, NY which presented a total eight autism-friendly performances of Metamorphosis throughout the year in up to 1,700 seat tents in Manhattan and Queens, NY; Boston, MA; and Bridgewater, NJ. The impact on attendees with autism or with other developmental or cognitive disabilities was immeasurable. From a mother at Stages St. Louis, “My daughter is in this show. Until today, her younger brother had never seen her perform because he is autistic and needs to get up and walk around every now and then and can be loud when he’s excited. Today, he not only saw his sister perform but he felt he was in a safe space, and he gave her a standing ovation every time she walked on stage.”

SB: With the partnerships, what resources do you provide?

LC: Conference calls. We help them in the planning. We recommend give yourself first time six months to a year to plan for this. We show them examples of the social narrative, character guides, video of what it’s like to walk inside the theatre, various supports day-of, what works out the best for us in terms of the koosh balls and stress stars. Just essentially, share our play book, what worked well for us and we always emphasize adapting for your community. And that goes for what you call the performance as well. In New York, we use the term autism-friendly because our community wants that and because in the initial planning they wanted to own that word and raise the awareness. Other parts of the country might use the term sensory-friendly, in the U.K. they like relaxed performances. But it doesn’t matter. The thought process is the same, you’re welcoming people on the autism spectrum as well as individuals with other developmental or cognitive disabilities and making slight adjustments that make the experience more comfortable.

SB: What advice do you have for theaters or other organizations who want to create autism-friendly events?

LC: Jump in and do it. Don’t be afraid because you will learn every time you do it; you’re going to do it better. Opening up accessibility for people on the spectrum as well as for other individuals with cognitive and developmental disabilities is where the need is right now. All theaters get it about providing captioning and audio description, but they are neglecting a huge audience in their communities. So, make the effort. Reach out there, you will not regret it.

I would advise choosing the first production (or productions) that are going to be successful. Particularly the first one. Make sure it’s a positive experience because this is a new audience. So look for a show that would be engaging to all families. Please do a weekend matinee. Scheduling this on a weekday. About 90% of the people on our surveys say they want a Saturday or Sunday matinee. They cannot come during the week. Again, this is geared for families. If you’re working with school groups, that might be different. Oh, an advisory group. Three is a good number. Make sure you get some outside input, someone who’s looking at the production you’re considering with an autism eye. Because what an artistic director might think is a good choice is not necessarily what someone who works with people on the spectrum, or someone on the spectrum. Don’t discount the value of having someone on the spectrum as one of your advisors.

SB: Can you describe some of the feedback you have received from participants?

LC: The overwhelming feedback we’ve received again and again is how wonderful it is to be in a judgment-free environment, where parents and siblings can just relax. They don’t have to worry about explaining behavior, they don’t have to feel that they’re being stared at. One very telling comment came from a mother last April after our Disney Junior show, who said, “Here I am, sitting in a theater with 2,000 strangers, and yet I feel we’re all part of the same family.” She’s right. They all understand each other. So a child who’s stimming or needs to get up, is singing along, it’s wonderful. There’s no difference. It’s not bothering anyone.

SB: Are you always able to offer the tickets at 40-50% off or is that the goal?

LC: That’s the goal. We hit that most of the time. If you have a family of four that you want to bring to a Broadway show, and you’ve got parking involved and public transportation, it’s important to keep the cost low. And then you get into all the additional expenses parents have: medical expenses, schooling, one-on-one therapists.

SB: Can you tell me anything about future direction of ATI?

LC: We are interested in working with off-off Broadway companies and consultancies where we will help them provide autism-friendly performances during the summer which is a hard time for us to book an autism-friendly Broadway show so we have our summers to help smaller theaters that might be willing to open their shows to the community.

SB: Is there anything I left out?

LC: I want to cite National Theater America Office with Curious Incident. They recognized that they wanted to make the show as affordable to the autism community as possible, so they went out and sought funding to underwrite the cost. So all of our Curious Incident tickets we were able to sell for $25. Orchestra to balcony, $25 thanks to the National Theater’s funding to help underwrite the cost. I wish more producers thought in terms of providing these affordable opportunities. It’s in the nature of the commercial theater that it’s very expensive to do shows, but if occasional opportunities could come along like this, we could reach so many more people. I remember getting e-mails from parents who were saying, “This is the first time I’ve ever been able to sit in the orchestra.”

ABOUT LISA CARLING

Lisa CarlingLisa Carling is Director of TDF Accessibility Programs (TAP) at Theatre Development Fund where she runs a department of services for people with physical disabilities as well as individuals on the autism spectrum or with other developmental or cognitive disabilities. She has spoken on accessibility panels for the Broadway League Education Forums, Association of Performing Arts Presenters, Americans for the Arts and the Kennedy Center’s Leadership Exchange in Arts and Disabilities (LEAD) conferences. Lisa received a “Distinguished Leadership in Hearing Accommodation Award” from the Hearing Loss Association of America New York City Chapter in 2015 and a “Community Hero Award” from Best Buddies New York in 2014. TDF has won seven accessibility awards honoring her department achievements, including the “Excellence in Accessibility Leadership Award” at the 2006 LEAD conference. Her credits include: launching the “Autism Theatre Initiative” (2011) which makes theatre accessible to children and adults on the spectrum and their families; designing TDF’s “National Open Captioning Initiative” (2004) that partners with regional theatres across the country to expand audiences of people with hearing loss; and establishing TDF’s open captioning on Broadway program (1997). Lisa created “Access for Young Audiences” (1995), a service that provides sign language interpreting, open captioning (added, 1998) and audio description (added, 2008) for students with hearing and vision loss who attend specially scheduled Wednesday matinee performances on Broadway. Lisa holds an MFA from Yale School of Drama.

Autism Awareness Month Interview Series: Creating Positive Change in ASD Treatment Through Science, Support and Education with David Celiberti, PhD, BCBA-D

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We couldn’t be more thrilled to wrap up our Autism Awareness Month Interview Series with David Celiberti, PhD, BCBA. Dr. David Celiberti is the Executive Director of the Association for Science in Autism Treatment (ASAT) and provides consultation to public and private schools and agencies in the U.S. and Canada. Here, Dr. Celiberti shares his wealth of knowledge and experience in creating positive change in autism treatments through scientific research and high-quality education and support.

Don’t forget to check out the other interviews from our Autism Awareness Month Interview Series here!

Creating Positive Change in ASD Treatment
Through Science, Support, and Education
with David Celiberti, PhD, BCBA-D

SAM BLANCO: I consider the Association for Science in Autism Treatment (ASAT) to be an invaluable resource for both parents and practitioners. You serve as the Executive Director. Before we discuss ASAT, can you tell us a bit about your background?

DAVID CELIBERTI: First and foremost, thank you for the opportunity to participate in this interview, particularly as you are asking about topics that are near and dear to my heart. I have been fortunate to have a career in the treatment of autism spectrum disorders (ASD) where the journey has been just as reinforcing as the destination. I continually urge young people to work hard at finding a career path consistent with their passions. Among my many reinforcers in the field of ASD treatment are interactions with parents and siblings who did not choose a life that included ASD, but still love unconditionally, roll up their sleeves and embrace powerful roles as agents of change. Additionally reinforcing has been my collaboration with myriad professionals, particularly those who are grounded in, and informed by, science. Perhaps most inspiring, though, are the individuals with ASD themselves who work so hard to acquire new skills, learn effective strategies for negotiating their experiences, and remind us daily that science-based treatments, such as applied behavior analysis (ABA), truly make a difference.

I currently serve as the halftime Executive Director of ASAT. I view this role not as a job but as a “lifestyle”, and I am so proud of what ASAT accomplishes every year, even with a tiny operating budget. We have an incredible board of directors from diverse professional backgrounds such as special education, behavior analysis, psychology, social work, sociology, law, medicine, speech-language pathology, computer science, family advocacy and business. Many of our board members have family members with ASD. Their commitment to helping other families and professionals find a clearer path to effective intervention is astounding to me. We also have scores of volunteer coordinators, externs, and an active Media Watch team who do much of the “heavy lifting”, helping ASAT remain productive, current, and responsive to the needs of the autism community.

SB: For those out there who aren’t familiar with ASAT, can you talk a little bit more about the organization’s mission and why it continues to be such an essential resource?

DC: With respect to our mission, we improve the quality of life for individuals with ASD and their families by promoting the use of safe, effective treatments, which are grounded in science, for people with ASD. As you know, there are over 400 treatments for autism, with the vast majority lacking any semblance of scientific support. We achieve our mission by sharing accurate, scientifically-sound information with professionals, parents and journalists; and by countering inaccurate or unsubstantiated information regarding autism and its treatment as it comes up. Unfortunately, there is so much out there which distracts consumers from making the best possible choices. Our overarching goal is to help parents and providers become savvy consumers of information who can truly discriminate science from pseudoscience. This means being armed with the knowledge to ask practitioners and marketers of ASD interventions critically important questions related to the state of their science, consult with knowledgeable and impartial professionals about potential treatments, and establish methods for assessing the benefits of treatments when they are adopted by the family and their intervention team. It is absolutely heartbreaking that autism treatment has become the type of business in which parents of children with autism must work so hard just to sort through so many options and mixed messages just in order to help their sons and daughters.

For more information, your readers can visit ASAT’s comprehensive website at www.asatonline.org. On the website, they will find extensive information about the scientific support (or lack thereof) behind the full array of treatments proposed for autism; resources and guidelines on how to make informed choices and weigh evidence in selecting treatment options, and information for various groups such as parents of newly diagnosed children, parents of older individuals, teachers, medical providers, and members of the media community. We encourage people to revisit ASAT’s website often, as information about autism treatments is frequently updated to reflect the latest research, and new content is routinely added.

ASAT also publishes a free quarterly newsletter, Science in Autism Treatment. Sign-up information is available at https://asatonline.org/signup. The quarterly e-newsletter features:

  • Invited articles by leading advocates of science-based treatment;
  • A Clinical Corner which responds to frequently asked questions about autism treatment;
  • A Consumer Corner which recommends resources that can guide and inform treatment decisions;
  • A Focus on Science column which is designed to empower families to make educated treatment decisions by highlighting those elements that constitute science-based interventions as well as warning signs of unsubstantiated treatment;
  • Detailed summaries of specific treatments for autism;
  • Book reviews;
  • Highlights of our Media Watch efforts and discussion of accurate, and inaccurate, portrayals of autism and its treatment by the media;
  • Reviews of published research to help consumers and professionals understand and gain access to the science;
  • Critiques of policy statements related to autism treatment; and
  • Interviews with those who advance science-based treatment and confront pseudoscience.

Finally, your readers can also follow us on Facebook and on Twitter at @asatonline.

SB: You have dedicated a lot of your time to providing services for underserved populations, from direct services to organizing fundraisers that support organizations that serve economically disadvantaged children. Why is this an important area of work for you?

DC: When I was in graduate school in the late 1980s and early 1990s at Rutgers University under the mentorship of Dr. Sandra Harris, I was struck that only a tiny percentage of students with ASD were receiving the lion’s share of the available expertise and resources. This disparity was troubling to me as I recognized that there were scores of other children with ASD who were receiving “generic” special education services which did not yet incorporate state-of-the-art behavior analytic intervention. My hope was to one day dedicate a portion of my time to supporting students with ASD in inner city communities. As my career unfolded, I had the opportunity to work at the Rutgers Autism Program, where part of my duties focused on outreach. I started working in rural Maine in 1997, helping public schools develop and implement educational programs to students with ASD, and have now returned over 110 times! It is not that urban setting that I had envisioned as an idyllic graduate student; however, I quickly realized how rewarding it was to provide services in geographic areas that did not have the existing resources, and to assist public schools in providing high quality educational experiences.

Hoboken, New Jersey, where I live, is home to a significant number of economically disadvantaged students. I began to seek collaborative relationships between ASAT and other local organizations which focused on poverty. The common thread was the importance of providing children with meaningful, socially valid and effective opportunities to realize their fullest potential despite the myriad obstacles that they face. That resonated well with me as someone whose career focuses on the treatment of ASD. To date, my fundraising efforts have benefited four Hoboken-based organizations combating the barriers associated with poverty.

SB: I would like to go back to your reference about public school programs. In your view, what are some of the key elements of a high quality education for students with autism?

DC: This is such an important question! In a nutshell, a high-quality education would include the following elements:

  • Be truly individualized – An educational plan should truly fit the child like a glove fits a hand. Services should not be about what a provider likes to do, but rather what the student needs, as determined through ongoing, valid assessment.
  • Be comprehensive – A high quality education targets the full array of skills that will promote success at home, school and community and uses a wide range of techniques based on science that are well fitted to the skills being targeted.
  • Keep the future in mind when selecting goals – The skills needed to be successful and marketable in the next setting (be that a particular job or even Mr. Walker’s 4th grade classroom) must be identified and addressed.
  • Use well conceptualized behavior management strategies – When addressing challenging behavior, these strategies should take into account the underlying function of the behavior, include carefully selected antecedent and consequence based supports, and build skills to help students better meet their needs in a way which promotes their day-to-day independence and opportunities.
  • Consider and offer inclusion opportunities carefully – Ensure that it occurs with the appropriate supports and is delivered by adequately trained staff. Social skill development does not occur through pure exposure alone; rather, skill acquisition occurs when inclusion is approached as a systematic, individualized process, with proper supports, monitoring of data, and a goal of challenging the individual with ASD while not overwhelming them, or inadvertently creating isolation.
  • Carefully implement instruction, including modifications and accommodations – Promote early success and carryover, identify and use powerful motivators, and consider how to motivate students to work hard, to learn new skills, and to minimize frustration.
  • Allocate resources thoughtfully – Intervention and teaching-team members need solid training in order to implement teaching procedures and services. Regularly scheduled team meeting promote coordination, particularly when multiple disciplines are involved.
  • Engage parents – Not only is it important to continually seek input from parents about treatment priorities and goal selection, parents benefit from the training, collaboration, and information that will enable them to embrace their role as a co-pilot in their child’s intervention. This support should include siblings, grandparents, and other significant individuals for whom parents consent to their involvement. Engagement should occur throughout the educational journey and be adjusted to face the unique needs and challenges at each point in time.
  • Take data collection seriously – Ongoing data collection enables one to objectively assess progress, make timely adjustments, and remain accountable to those we serve. No provider should get a “pass” on data collection.
  • Start early and get it right from the start! – We know that early intervention can make an incredible difference. Don’t squander precious time on interventions that are not time-tested and research based.

SB: You’ve been instrumental in implementing change in many aspects of our field of ABA and ASD treatment in general. Do you have your thoughts on two or three areas that you think need to be addressed differently? How can we improve our work there?

DC: There is certainly room for improvement. Promoting science and science-based interventions such as ABA is not an area in which we have been very successful. Media representations tend to favor less science-based treatments, perhaps because their promoters use more sensationalized language when describing both their methods and their outcomes. Behavior analysts must take a closer look at how they market their work so that their outcomes can be more understandable and appreciated by various stakeholders (e.g., media, funding sources, consumers). We must also be more proactive in helping the media approach autism treatment in a more accurate manner.

Autism is clearly a spectrum disorder. In recent years, we have seen many higher functioning persons with ASD who have been very vocal; generously sharing their views about the appropriateness of treatment. Although their views and perspectives are important, I worry that the public, policy makers, and other important stakeholders may take these views as applicable to the entire spectrum. I believe this has the potential to do parents a tremendous disservice when they try to acquire the resources, tools, and experiences which will enable their son or daughter (who may not be on the upper end of the spectrum) to realize his or her fullest potential. On the other hand, one important take-away message is the importance of cultivating and celebrating the strengths of individuals with ASD rather than approach our work from a pure deficit model.

Another significant concern is that the hundreds of thousands of children with ASD who were diagnosed in the last two decades are growing up and becoming hundreds of thousands of young adults with ASD; as a society, we are failing them. When children with ASD turn twenty-one, funding for services drastically changes. As a result, there are very few quality programs for adults. We are facing a crisis in the field, with a scarcity of services for adults with ASD and the absence of a clear strategy for closing the gap between the ever-increasing need, and an unprepared supply of resources. Autism awareness must include important conversations about how we can help adults with ASD live and work independently, develop meaningful relationships, reduce challenging behaviors that may limit opportunities, access faith communities, and enjoy the array of recreational pursuits which are available within their communities. Those are important conversations to have and these conversations should translate into actionable items at every level of service delivery.

SB: With Autism Awareness month drawing to a close, what would you like the general public to know about autism treatment?

DC: Even though ASD is no longer the rare disorder it once was, each person with ASD is unique. Efforts to help them realize their fullest potential should be individualized to meet the specific needs of each individual with ASD across settings such as home, school, community and the workplace; and informed by input from the individual, as well as his or her family.

Do not believe everything you hear. There are dozens of purported “miracle cures” and “breakthroughs” for ASD which receive widespread media attention, even if they have not been proven effective. Sadly, effective treatments rarely gain media attention.

On a related vein, do not believe everything you read. Not all information on the internet is reliable and accurate, and celebrities are neither trained nor equipped to define or guide ASD treatment even though many appear comfortable in that role. On the other hand, there is a large body of research published in peer-reviewed scientific journals which should guide autism treatment. Visit our website to learn more at www.asatonline.org.

Lastly, there is hope and tremendous opportunity. With the right treatment, individuals with autism can lead happy and fulfilling lives. Research indicates that interventions such as ABA can effectively help children and adults with ASD realize their fullest potential. As stated earlier, we know that early and intensive behavioral intervention can make a huge difference, both with respect to human potential and significant cost savings across the lifespan.

SB: How can the general public make a positive difference?

DC: It cannot be overstated that it takes a village to help individuals with ASD learn to enjoy and benefit from all that their communities have to offer. Every member of the public can make a difference in supporting individuals with ASD and their families. There are so many positive ways the public can help. Although I will share several examples here, this list is by no means exhaustive:

  1. If you have a family member or a neighbor who has a child with ASD, ask specifically how you may be helpful (e.g., assist with siblings, offer play dates, help with transportation to therapies, or provide an empathic ear).
  2. If you see a family struggle in the community, do not stare, comment, or judge. In some cases, it may be appropriate to go over and assist (e.g., “I see you are helping your little guy, may I help you put your bags in the car?”). Family members may take you up on your kind offer or may just decline.
  3. If your children are interested, inquire if there are opportunities for them to help classmates with ASD at their school (e.g., becoming a lunch buddy, peer tutor). This is particularly beneficial in the later grades when opportunities for students with ASD to interact meaningfully with their typically-developing peers is lessened.
  4. At school board meetings encourage board members to learn about best practices in special education which are scientifically validated. Inquire if special education resources are being spent on interventions that lack scientific support or are not being spent on those that do possess such support (e.g., ABA). In fact, a research basis should inform most decisions.
  5. Some faith communities are very welcoming to families of individuals with ASD, whereas others are not. Discuss this within your place of worship. Identify steps that can be taken to help individuals with ASD participate in their religious communities in a positive and meaningful manner. This applies to both religious ceremonies, as well as day to day participation.
  6. Encourage organizations to be more accepting of persons with ASD and to take appropriate steps to learn how to create meaningful inclusion opportunities (e.g., seeking out information, soliciting training and education, learning from others who are doing this with success).
  7. If you are involved with youth sports or other extracurricular activities, offer to coach and/or mentor a player with ASD.
  8. Encourage your town or city to provide and/or create recreational opportunities that include individuals with ASD as there is often a tendency to focus only on separate experiences.
  9. Support ASD organizations that put science first. Research how your donations are used.

ABOUT DAVID CELIBERTI, PHD, BCBA-D

DCelibertiDr. David Celiberti is the Executive Director of the Association for Science in Autism Treatment (ASAT). He previously served as the President of the Board of Directors of ASAT from 2006 through 2012. In response to the increasing number of parents attending professional conferences to learn about applied behavior analysis, he also founded the Parent-Professional Partnership SIG for the Association for Behavior Analysis International in 2000 and served as its Co-President until 2014. He had also served as President of the Autism Special Interest Group (SIG) from 1998 to 2006. He currently sits on a number of Advisory Boards in the area of autism, as well as in early childhood education. He has organized fundraising initiatives to support afterschool programming for economically disadvantaged children in Northern New Jersey. Dr. Celiberti is in private practice and provides consultation to public and private schools and agencies in the U.S. and Canada. He received his Ph.D. in clinical psychology from Rutgers University in 1993. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. He has taught courses related to ABA at both the undergraduate and graduate levels, supervised individuals pursuing their BCBA and BCaBA, and in prior positions had conducted research in the areas of applied behavior analysis, family intervention, and autism.

Autism Awareness Month Interview Series: Developing Social Skills With Young Learners with Mary Jane Weiss, PhD, BCBA-D

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This week, we’re excited to share the second installment in our series of exclusive interviews with autism experts for the month of April, featuring Mary Jane Weiss, PhD, BCBA-D. In this interview with BCBA Sam Blanco, Dr. Weiss discusses some of the most effective ways for parents and practitioners to develop social skills in young children, as well as some of the most common errors that are made in teaching these important skills.

Developing Social Skills with Young Learners
with Mary Jane Weiss, PhD, BCBA-D

SAM BLANCO: What advice do you have for parents of young learners who are concerned about social skills?

MARY JANE WEISS: Well, we all need to be concerned about social skills. One related issue is social motivation. If a learner is socially interested, social skill training is considerably easier. If not, we need to work on making social interaction meaningful and rewarding. What are the favorite activities of this child? How can we embed ourselves into them? Can we teach manding for them so that we grant access? Can we create social routines within them? How can we make something that is not yet social begin to be social?

SB: What are activities parents can engage in to help their learners develop stronger social skills?

MJW: Parents are in a great position to teach social skills, because there are endless opportunities to use as teaching moments.  Think of requesting: there are countless moments in every day to work on requesting – food, drinks, snacks, tissues, a ball, to go outside, to play a game, to make a silly face…Imitation too is so easy to work on and the list of things to imitate is long.  Can your child imitate how you clean the table, sweep the floor, load the dishwasher, open the mail, help a younger sibling do a puzzle? And joint attention: capture the unusual moments in every day and create a social exchange around them!

SB: When considering social skills for young learners, what are the first skills you focus upon?

MJW: Imitation, Joint Attention, Manding… I think we have to start with these.  They are core socio-communicative skills.  Many higher order skills require these foundations.  And I think we need to focus on pairing ourselves with great things to naturally build approach behaviors and naturally reduce avoidance behaviors.

SB: Many parents and practitioners are concerned about eye contact. Can you talk about that skill? Why is it important? Do you start with eye contact? 

MJW: There are many opinions about this.  I was trained to be aware of the ways in which eye contact can be trained to be non-functional.  For example, if we ask for eye contact before every instruction, we run the risk that learners will depend on that cue in order to attend/be ready for ANY OTHER instruction.  That is not a desired outcome.  On the other hand, the absence of eye contact is very stigmatizing, and does not invite social bids.  Here are some ideas for making it functional:

  • Build eye contact through engaging playful interaction.
  • Try not to over-rely on any attentional cue (but especially not “look at me”).
  • Experiment with more natural ways to get eye contact on command (e.g., in response to name or given as a group instruction to all).

SB: Are there any common mistakes you see in teaching social skills?

MJW: YES, thanks for asking that question! The biggest mistake I have seen is teaching social skills in rote and contrived situations that do not represent natural experiences. When we teach a list of social questions, we are not necessarily helping learners to develop social conversation skills. We do not ask people their name, address, favorite food, and siblings’ names as conversation (beyond the first day of meeting someone!). We need to teach CONTEXT. We do not ask someone about their weekend each time we see them on Monday. We only do that the FIRST time.  Sensitivity to context is often absent from social skill instruction.

Also, I see people focusing on responsivity to questions.  We need to broaden the responsivity training.  In fact, many social exchanges start with comments.  Someone comments about something, and we respond with comments or questions.  Most children with autism are taught to respond to questions.  Sometimes, they do not even realize that a comment is a social opportunity.

Finally, we need to teach INITIATION skills.  How do we start a conversation, ask someone to play with us, ask for something we need, request to join a game?  We have to balance our instruction in responding with instruction in initiation!

SB: There’s a common misconception that ABA is solely teaching skills at a table in discrete trials. How can ABA be useful in teaching social skills?

MJW: ABA can be useful in teaching a wide variety of social skills well beyond DTI!  I really like the work on scripts.  I also like the way Jed Baker has outlined social skills training for non-vocal learners.  I absolutely love the Crafting Connections curriculum; it is so focused on socially valid skills.

SB: What resources do you recommend to parents?

MJW: There are several curricular resources that I think can be useful.  Some of my favorite books are:

The Social Skills Picture Book: Teaching play, emotion, and communication to children with autism
Jed Baker (Author)
ISBN: 978-1885477910, Publication Date: 2003

Building Social Relationships: A Systematic Approach to Teaching Social Interaction Skills to Children and Adolescents with Autism Spectrum Disorders and Other Social Difficulties
Scott Bellini (Author)
ISBN: 978-1931282949, Publication Date: 2006

Social Skills for Teenagers with Developmental and Autism Spectrum Disorders: The PEERS Treatment Manual
Elizabeth A. Laugeson and Fred Frankel (Authors)
ISBN: 978-0415872034, Publication Date: May 20, 2010

Teaching Conversation to Children With Autism: Scripts And Script Fading
Lynn E. McClannahan and Patricia J. Ph.D. Krantz (Authors)
ISBN: 978-1890627324, Publication Date: 2005

Crafting Connections: Contemporary applied behavior analysis (ABA) for enriching the social lives of persons with Autism Spectrum Disorder
Mitchell Taubman, Ron Leaf, and John McEachin (Authors)
ISBN: 978-0975585993, Publication Date: 2011

I also really like the book series below:

  • Joy Berry series of books (Help Me Be Good series)
  • Cheri Meiners series of books (Learning to Get Along series)

SB: Is there any particular assessment you recommend practitioners use to assess social skills?

MJW: There are a variety of assessments that target social skills. Some are useful for group interaction (e.g., the ABLLS-R has a section on classroom relevant skills……).  The VB-MAPP has some elements that are very socially relevant, including the Barriers Assessment and the Transitions Assessment.  Those assessments help to identify individuals that may be ready for more group instruction or more naturalized instruction.

SB: Are there any particular studies you direct practitioners to that are related to social skills training for individuals with autism?

MJW: I really like the work of Justin Leaf and his colleagues at Autism Partnership.  Their elegant studies have been real contributions to the empirical literature.  Bridget Taylor has also done some excellent work, including in some centrally important areas such as joint attention.

ABOUT MARY JANE WEISS, PHD, BCBA-D

Mary Jane WeissMary Jane Weiss, Ph.D., BCBA-D has been working as a behavior analyst serving people with autism for over 25 years. She received her Ph.D. in Clinical Psychology from Rutgers University in 1990, and became a Board Certified Behavior Analyst in 2000. She is currently a Professor of Education at Endicott College, where she directs the graduate programs in ABA and Autism. She previously served as an Associate Professor at the Graduate School of Applied and Professional Psychology at Rutgers University, and as Director of Research and Training and as Clinical Director of the Douglass Developmental Disabilities Center at Rutgers University for 16 years. Her clinical and research interests center on defining best practice ABA techniques, on evaluating the impact of ABA in learners with autism spectrum disorders, and in maximizing family members’ expertise and adaptation. She is a regular presenter at regional and national conferences on topics relevant to ABA and autism. She is a past president of the Autism Special Interest Group of the Association for Behavior Analysis, a former member of the Association of Professional Behavior Analysts Board of Directors, and she currently serves on the ethics review committee of the Behavior Analyst Certification Board, on the Scientific Council of the Organization for Autism Research, on the Legislative Affairs Committee of the New Jersey Association for Behavior Analysis, and on the Board of Trustees of Autism NJ.

How to Assess and Address Pants-Wetting Behavior—A Response to a Teacher’s Question

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Sometimes we get specific questions from teachers and parents about managing problem behaviors that are quite common. In these cases, we think it can be helpful to share the question and response, so that others in similar situations might benefit from the suggestions offered. Bed and pants-wetting can be an enormously challenging issue both at home and at school, so when we received the following question from a teacher in Australia about her student, we thought it was a great opportunity to offer some suggestions and strategies on how to address the behavior.

PantsWettingQA

This is definitely a difficult behavior to address. It’s also challenging to provide accurate advice without directly observing the behavior, instead here are a few questions to consider and potential resources.

  • First and foremost, this is a behavior in which you should consult with a Board Certified Behavior Analyst for assistance. You can find BCBAs in your area by going to this webpage: https://www.bacb.com/?page=100155. If possible, reach out to more than one to find the BCBA who is the best fit for you and your learner.
  • Second, you should conduct a functional assessment to clearly determine the reason for the behavior. It may be for attention, but you may discover there is a different cause. It is best to perform a formal functional analysis, but if that is not possible, you may consider using the Functional Assessment Screening Tool (FAST). To get the best results from this, you should have more than one person fill it out, and, if possible, one person who observes the behavior but is unfamiliar with the child. Compare results to see if you are in agreement, then make a behavior intervention plan based on the function of the behavior. For more information about the FAST and its reliability compared to a formal functional assessment, you should refer to the study by Iwata, Deleon, & Roscoe (2013).
  • If indeed the behavior is for attention, consider how to provide minimal attention for pants-wetting. You mention that he receives high-level attention right now. What qualifies as high-level for him? Is it eye contact? Physical touch? Proximity? There are ways to remove each of these types of attention while also making sure you address the behavior hygienically.
  • While your son is continent, some of the strategies that are used in toilet training may prove helpful in intervening with this behavior. Take a look at this article by Kroeger & Sorenson-Burnworth (2009), which “reviews the current literature addressing toilet training individuals with autism and other developmental disabilities.” It may provide potential solutions that you have not attempted.

I hope this information is helpful! And good luck as you plan and implement your intervention.

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.