Explaining Decision to Use Science-based Autism Treatments

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.

Introducing Smart Kidz Club!

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Different Roads is proud to introduce you to Smart Kidz Club, a digital library of educational resources for young readers, available on web & mobile devices. Smart Kidz Club’s collection of more than 450 eBooks, interactive resources, play activities, and comprehension quizzes can be accessed safely off-line on mobile devices for anytime, anywhere learning. There’s even a special category dedicated to teaching children with ASD!

You can access a no-risk, two week free trial here!

 

Pick Of The Week: Introducing our brand new Play Idea Cards app!

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Our new app is a complete play skills curriculum. As guided by evidence-based intervention principles, the curriculum strengthens students’ pretend and innovative play skills, all for just $9.99!

 

Evidence-Based Intervention
We give you a step-by-step guide on how to develop your child’s play. Practical and easy to follow, it’s also based on years of research that breaks learning pretend play into 14 levels. Find out what level your child is currently on, and what to do next. Clear instruction and easy, executable ideas help your child play with toys at home.

Easy To Follow Play Idea Cards
Our flash cards are easy to use while you (parents, therapists, & teachers) play with your child. Use our suggested play activities, or create your own based upon the ideas from the cards. Most of our ideas come from toys you already have in your home, so start today!

Key Features

  • A clear instruction guide developed by experts in the field of ASD
  • 14 step developmental play scale that works for any child with any language capability
  • Simple play ideas using toys you already have at home!
  • 100+ ideas for how to play with your child
  • An outdoor option for every level so you can take your play outside!

Guide your young learner down the path of purposeful play! 

7 Tips for Choosing Educational Apps for Your Learner

While tablets can provide a wealth of material for teaching all sorts of skills, it can be incredibly challenging to wade through all the mediocre or just terrible apps in order to find something worthwhile for your learner. Here are a few tips for finding apps that are appropriate for your learner’s skill level and interest.

  1. Use social media to get suggestions. I’ve found several apps that I love to use with my students simply through following facebook groups focused on apps in education or apps in special education. If you love twitter, following teachers may also help you get good recommendations.
  2. Look at websites such as teacherswithapps.com or graphite.org. Both of these websites are chalk full of recommendations and reviews from teachers, and both have sections devoted specifically to special education. Graphite.org, in particular, has great search capabilities for you to easily find apps based on subject matter, grade level, or skill type.
  3. Take a look at this exhaustive list from Autism Speaks. This list is focused on apps specifically for learners with autism, and it allows you to filter your search by category of app, age group, and type of device.
  4. Don’t ignore apps with in-app purchases! Many parents and teachers I speak with can’t stand in-app purchases. I’d like to re-label this as a free trial. You can take a look at the app, assess the quality on your own, and see if your child enjoys it. If it looks good, then you get to add content after you’ve tried it out.
  5. Look at the developers of apps you’ve already had success with. There are many app companies out there that are putting out consistenly good educational apps (Tiggly, Toca Boca, Pepi Play, Artgig Studios, and Motion Math just to name a few). So once I find a good app, I always look at the other apps created by the same company.
  6. If you’re a teacher, look for options to modify or individualize material. I always want to use an app with multiple students, so if I’m able to level the material or even add in individualized material, that’s ideal. For instance, Mystery Word Town just added an aspect to the game in which you can put in the individual learner’s target spelling words. What’s better than that?!
  7. Ask other parents, other kids, and your kid! You might find some of your favorite apps simply by starting the conversation with other people. You can even start a conversation by sharing your favorite app.

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.

Different Roads to Learning’s “What Goes Together?” App is Now Available on Android!

What Goes Together?Our very own app for matching and sorting What Goes Together? is now available for Android devices*. Find it available now in the Google Play Store, on Amazon, and in the Barnes & Noble Nook Store.

This interactive game develops language, discrimination, and reasoning skills in young learners. Clear, colorful images of everyday objects promote an understanding of functions and the relationships between items that children encounter on a daily basis. With built-in reinforcement and error correction, this game provides a solid foundation in building critical expressive and receptive language skills.

Screenshots captured from a 7-inch Samsung Galaxy Tablet.

In What Goes Together?, images are prompted with the question “What goes together?” Students then drag the prompted object to the correctly associated object among the 3 shown across the bottom of the screen. Correct responses receive visual and auditory reinforcement, while incorrect answers are corrected by a visual prompt of the correct answer flashing. After all targets have been seen once, they are reintroduced in a new, randomized order. The app takes data for the percentage answered correctly across rounds as well as sessions in which the app is in use.

*What Goes Together? runs an Android 2.2 platforms and up. This app is also available in the Apple iTunes Store.

Tip of the Week: Easy Modification for Promoting Functional iPad Use

The iPad is a highly motivating item for many kids. But many parents and teachers find it frustrating to teach kids with autism to use the iPad functionally. Here are three tips that can help you promote functional use.

  1. Lock Rotation – Some learners with autism like to watch the screen rotate as they move the iPad. This prevents them from using the iPad to complete tasks, create visual or audio products, or play games. There is a small switch on the side of the iPad that is factory preset to mute the volume. You can change the function of this switch to lock rotation, preventing your learner from fixating on rotating the screen.LockRotation_Image
  2. Guided Access – When providing access to the iPad, it’s a good idea to give your learner options of particular apps to engage with instead of providing free access to everything available on the device. For example, during a teaching session, I might say, “When it’s time for a break, do you want to play Match or Simon?” When it’s time for the break, I open the app the learner chose, then activate Guided Access, which makes it impossible for the learner to switch to other apps.GuidedAccess_Image
  3. Timed Play – Sometimes I want to limit the amount of time a learner spends on the iPad. When I am providing a student a break during a teaching session, frequently I limit the time to 23 minutes. Parents may allow their child to play on the iPad for 30 minutes. You can set the iPad to immediately shut off at the specified time. I like to use this function because it prevents the end of an preferred activity from being associated with me.TimedPlay_Image

**Unfortunately, the iPad is the only tablet with which I am familiar. If you use another tablet and have tips such as those above, please share them with us!


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.

Different Roads to Learning’s “What’s That Sound?” App is Now Available on Android!

We’re thrilled to announce that our very own app for auditory discrimination What’s That Sound? Learning to Listen and Identify Sounds is now available for Android devices*. Find it available now in the Google Play Store, on Amazon, and in the Barnes & Noble Nook Store.

Simple auditory processing skills lay the foundation for learning how to read, speak, and spell. What’s That Sound? is an interactive game that helps develop auditory discrimination and processing skills in young learners. In this game, players will improve their skills by matching objects and their associated sounds.

Reinforcement with balloons shown above.

Screenshots captured from a 7-inch Samsung Galaxy Tablet.

In What’s That Sound?, images are prompted with a spoken question “What makes this sound?” and then a sound. Students then tap the image of the person, object, or animal correctly associated with the prompted noise. Correct responses receive visual and auditory reinforcement (see screenshot of balloons above), while incorrect answers are corrected by a visual prompt of the correct answer flashing. After all targets have been seen once, they are reintroduced in a new, randomized order. The app takes data for the percentage answered correctly across rounds as well as sessions in which the app is in use.

*What’s That Sound? runs an Android 2.2 platforms and up. This app is also available in the Apple iTunes Store.

Different Roads to Learning’s “Clean Up: Category Sorting” App is now available on Android!

Clean Up Cateogory Sorting AppWe’re extremely excited to announce that our very own sorting skills app Clean Up: Category Sorting is now available for Android devices*. Find it available now the Google Play Store, on Amazon, and in the Barnes & Noble Nook Store.

Clean Up: Category Sorting is an interactive game that develops language, reasoning, and sorting and classifying skills in young learners. Players of the game must “clean up” by putting 75 photographic images of toys, food, and clothing away in the correct shopping cart, refrigerator, or toy box. Each target is introduced by its label (“Where does the Apple go?”) in each round, where players see 15 unique images.

Screenshots captured from a 7-inch Samsung Galaxy Tablet.

Correct responses receive visual and auditory reinforcement while incorrect answers are corrected by a visual prompt of the correct answer flashing. After all targets have been seen once, they are reintroduced in a new, randomized order. The app takes data for the percentage answered correctly across rounds as well as sessions in which the app is in use. Clean Up: Category Sorting will help build foundational sorting skills for students just developing their sorting and classifying skills.

*Clean Up: Category Sorting runs an Android 2.2 platforms and up. This app is also available on the Apple iTunes Store

Just Added! Tiggly Counts – Learn math with fun, interactive apps

Tiggly Counts Feature

A playful world of math learning awaits in the all-new Tiggly Counts! From the award-winning makers of Tiggly Shapes, Tiggly Counts is a set of 5 counting toys that interact with 3 free iPad apps to connect children to a playful world of math learning. The apps and manipulatives work in tandem to develop a child’s number sense, counting skills, understanding of math operations, and more. The 3 free apps include Tiggly Chef, Tiggly Cardtoons, and Tiggly Addventure, and introduce children to a wonderful world of lovable characters that surprise and delight, as they learn essential early math abilities. Designed for children ages 3 and up.

Tip of the Week: Use Technology to Promote Social Interactions Between You and Your Child

Last month I had the privilege to speak in New Jersey at the 2014 Statewide Conference for Fathers of Children with Special Needs. I love the opportunity to speak with parents, and this conference allowed for lots of small group discussion that centered on the individual needs of each of the families represented there.

My focus was on utilizing technology, and one of the fathers said, “You know, I see what you’re saying about how I can use the iPad to increase social interaction, but my son won’t do that with me. When I try to work with him on the iPad, he just wants to go to Temple Run. He won’t play with it the same way he does with his teachers.” This question highlights the differences between the home environment and other environments. This is a common problem that parents face, not because they’re doing anything wrong, but because they have a different relationship with the child than the teachers do.

Go back to when you were in middle school. Imagine that you’re at home with your parents, you’re in your room engaged in one of your favorite activities, and your mother comes in and says, “Let’s watch a movie about how the solar system was created.” It is highly unlikely that you are going to leap at that opportunity. At home, you like to have your own space and free time, you have lots of choices for what you can do, and there are options that are more motivating than watching that movie.

Now think of the exact same situation, except you’re in your middle school science classroom and the teacher says, “Let’s watch a movie about how the solar system was created.” You never get to watch movies in that science class, you usually have to take notes and worry about when the teacher might call on you to answer a difficult question. It is much more likely that you are going to want to watch a movie in this scenario. Compared to the options you usually have during science class, watching this movie is highly motivating.

The same thing happens at home when you try to introduce an educational or challenging activity, and for learners with special needs, an activity we think of as fun may in fact be highly challenging. It’s important to acknowledge that parents are working with the child in a different environment so that we can create strategies that are feasible for creating success in the home. There are some things you can do to make it a bit easier on yourself when introducing iPad or tablet activities.

My biggest tip is to offer choices. For example, instead of saying “Let’s play on the iPad,” say, “Do you want to play Animal Race on the iPad or go outside and jump on the trampoline together?” This way, you’re labeling a specific app instead of providing free access and you’re creating an opportunity for interaction no matter what the child chooses.

My second tip is to utilize built-in accessibility tools. Use Guided Access to lock the app. This way, the choice really is to just play that app or select the other option presented. If the child selects the other option, that’s fine! You can let them know when they have free time on the iPad and when they only have the option of playing with a particular app. You can also limit the amount of time they play quite easily by going to your “Clock” app on the iPad or iPhone. Look at the menu of ringtones, scroll down to the bottom and select “Stop Playing.” Set the time, and when time is up, whatever app your child is playing with will automatically close. If you have a passcode set for your phone, then the passcode has to be typed in before access to the app is available again.

Some learners also respond very well to visual cues to signal when they have free time on the iPad versus structured time. This can be accomplished by changing the color of the iPad cover (my students know that the “orange iPad” is for structured time) or by placing a reusable sticker on the edge of the screen.

My final tip is to consider motivation. There are apps out there that I think are great, but I have to start with what my particular learner will be interested in and build from there. Find apps that have a characteristic that should appeal to your learner, such as specific cartoon characters, animals, or music.

Using these simple tips can provide some success in using technology to promote social interaction between you and your child, or between your child and his/her siblings and peers. If you’ve used other strategies successfully, please share them with us on Facebook.