Tag Archives: autism spectrum

The Benefits of an Early Autism Diagnosis

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Children are being diagnosed with autism earlier and earlier. Some children are as young as 18 months when they receive an autism diagnosis. Identifying an autism diagnosis at an early age can result in better future outcomes for a child, that is, if steps are taken to help children receive effective services, such as Applied Behavior Analysis (ABA). Early intervention, as it relates to ABA is oftentimes referred to as Early Intensive Behavioral Intervention (EIBI).

  • Early, because a child begins receiving treatment between the ages of 18 months and 3 years old.
  • Intensive, because of the amount of time treatment is provided. Research demonstrating the effectiveness of an Applied Behavior Analytic approach demonstrates that the optimal number of hours of treatment should typically range from 25-40 hours per week.
  • Behavioral Intervention, because it relates to the principles of behavior (such as reinforcement, shaping, and prompting) that have been demonstrated as effective strategies in changing behavior for decades.

Deciding to enroll an 18-month-old child into a therapeutic program that recommends upwards of 25-40 hours per week of intervention can be quite intimidating. However, children with autism demonstrate developmental delays in comparison to their typically developing peers. Therefore, the “intensity” of an ABA program helps to bridge the gap between a child on the autism spectrum and his/her typically developing peers. A quality ABA program will incorporate hundreds of valuable learning opportunities into a single hour of intervention. These learning opportunities are specifically tailored to meet each child’s unique needs, with the intent of teaching him/her the necessary skills to acquire age-appropriate behavior.

I have spoken to many parents who are hesitant to enroll their child in treatment that requires the level of intensity of an ABA program. However, the concentration on an individual child’s specific needs, paired with the magnitude of learning opportunities in a single day, allows for each child to achieve their personal best outcomes.

Because autism can lead to a lifetime of learning delays, the earlier a child can receive treatment, the better their long-term prognosis will be. I have never spoken to a parent who stated that they got their teenager with autism into treatment too early!

Dr. Breanne Hartley, PhD, BCBA-D is the Senior Clinical Director at Little Star ABA Therapy. You can learn more about Little Star on their website and Facebook page. 

Parenting Tips For More Independent Children

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“Dear Behavior BFF, How do I get my child to be more independent? I want her to handle dressing herself- things like getting out clean clothes, putting them on as much as she can, putting her dirty clothes in the correct hamper, etc. I know she is capable but she just chooses not to take care of these things by herself!”

I am going to take your word for it that your daughter does not have any limitations that would make the tasks associated with independent dressing difficult. So- how do you get her to actually do it? And do it consistently?

One question I have for you is simply this: Where are her clothes and hamper? Are they easy for her to access?  Let’s look at the physical environment and see if we can decrease the response effort for the desired behavior.

Response effort is what it sounds like: the amount of effort necessary to make a response. In other words, how easy it is to engage in the desired behavior.  We all typically orient toward a low response effort over something that is tedious or difficult. We can find ways to lower the response effort for the desired behavior, making it easier for our children.

So- if her hamper is in the laundry room and you expect her to walk her dirty clothes down the hallway to put them there- is there an easy environmental manipulation you could try? How about moving her hamper to her bedroom or bathroom- wherever the dirty clothes are removed? Walking down the hall to put clothes away doesn’t seem like a big deal- but a simple hamper location switch could be a game changer for increasing your daughter’s independence.

What about accessing her clean clothes? Is it hard to open her closet door? Does it stick sometimes or is the handle difficult to turn? Is her closet floor a mess that she has to climb over to get to the clothes? (Pause writing this article to go assess my own child’s messy closet to decrease her response effort in getting to her own clothes.)

If a simple environmental manipulation will increase the desired behavior, there is no need for an involved intervention. Try the simple solution first!

Now- moving things around might not be enough to increase your daughter’s independent behaviors. Enter positive reinforcement. What does she get for doing these things listed above? What is the reward for independently dressing herself? The feeling of a job well done?

Whatever the current reward is, it’s not working. If it’s not increasing the frequency of the behavior, it’s not reinforcement. Find a way to increase your daughter’s independent dressing by offering positive reinforcement following every instance of the desired behaviors. This can be any range of things- a high five, verbal praise, access to a preferred item or activity, points toward a goal in a token economy, whatever works for your family!

In short:

  • Decrease response effort by changing things in the environment to make the desired behavior easier to emit.
  • Provide positive reinforcement for engaging in the desired behavior.

No matter what behavior you are trying to increase, these are the go-to first steps we can always try as parents. These are powerful evidence-based tools of behavior analysis that are quick and easy to try and can lead to some pretty fantastic results!

This piece originally appeared on www.bSci21.com. 

About The Author 

Leanne Page, MEd, BCBA, is the author of Parenting with Science: Behavior Analysis Saves Mom’s Sanity. As a Behavior Analyst and a mom of two little girls, she wanted to share behavior analysis with a population who could really use it- parents!

Leanne’s writing can be found in Parenting with Science and Parenting with ABA as well as a few other sites. She is a monthly contributor to bSci21.com , guest host for the Dr. Kim Live show, and has contributed to other websites as well.

Leanne has worked with children with disabilities for over 10 years. She earned both her Bachelor’s and Master’s degrees from Texas A&M University.  She also completed ABA coursework through the University of North Texas before earning her BCBA certification in 2011. Leanne has worked as a special educator of both elementary and high school self-contained, inclusion, general education, and resource settings.

Leanne also has managed a center providing ABA services to children in 1:1 and small group settings. She has  extensive experience in school and teacher training, therapist training, parent training, and providing direct services to children and families in a center-based or in-home therapy setting.

Leanne is now located in Dallas, Texas and is available for: distance BCBA and BCaBA supervision, parent training, speaking opportunities, and consultation. She can be reached via Facebook or at Lpagebcba@gmail.com.

ABA Is Fun!

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ABA is Functional. Unique. Natural.

Here’s a great process to create a FUN ABA goal:

1. ABA goals are functional. This means goals are chosen because they are of importance to the child and the child’s ability to be a part of the community. That is, within the family, school, at the grocery store, etc.

Sam (not an actual client!) is doing really well with his preschool peers and the teachers are excited to move him up to Kindergarten. Our goal is to work on Kindergarten readiness skills: playing with toys in a functional manner, reading grade level words/letter sounds, and identifying numbers.

2. Each child is unique. The first thing we have to do is find the appropriate motivation. Children don’t fit into cookie cutter therapy programs. Every child is UNIQUE and will prefer different activities, experiences, foods, or toys. Identify a few of these highly preferred things your child enjoys.

Sam is pretty good at playing with a variety of toys, but ABSOLUTELY LOVES vehicles. In fact, this is the first thing he runs to during free play time and will sit for 15 minutes and play with airplanes and firetrucks. Sam will also consistently and quickly finish worksheets when told that he can play with vehicles after work.

3. Natural. A lot of people think that ABA only occurs at the table, but it actually occurs everywhere. ABA therapists may have to begin skill building at a table, but they will quickly work on generalizing skills to the natural environment. We want the child to be able to use all of that wonderful knowledge in all environments.

Time to piece it together! For Sam, we made a parking lot and filled in the parking spots with “targets.” Programs covered during his therapy time included:

– Receptive and Expressive identification of words and numbers (park the airplane in spot 11, what is parked in the spot that says “that”)
– Multiple step instructions (grap the red train, fill it up at the gas station, and park it in spot 20)
– Colors
– Block imitation from a model (Vehicles need gas to go! build a gas station pump that looks like mine!)
– Following instructions (Parking lots need stores! Go get the pile of blocks and build your favorite store)
– Receptive and Expressive Categories (where are the numbers/words/vehicles, what vehicle do you want?)
– Math, Counting (how many empty spots do we have left? How many more vehicles need spots?)
– Positional words (put the airplane on top of the store)
– Yes/no/not (is this a firetruck? find the airplane that is NOT yellow)
– Answering questions (the kids on this bus are hungry…where should they go?)

Remember: It’s important for children to play and have fun while they learn!

About The Author

Elizabeth Ginder, MSSW, BCBA, LBA is the Clinical Director of ABA Interventions, LLC. Elizabeth specializes in working with children ages 2 through early adulthood. She has experience working with children diagnosed with intellectual and developmental disabilities, as well as children with severe, challenging behaviors. Elizabeth also has a strong background in parent, teacher and staff training. Her focus is on verbal behavior, skill acquisition and teaching children how to have fun! You can find more information on ABA Interventions at their Facebook page or at www.aba-interventions.com.

The NR Blues

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What’s “NR” you ask? A common way to collect data after a trial in which the learner not only did not give a correct response, but didn’t respond at all, is to score “no response” (NR).

While motor actions can be prompted if the learner does not do anything, vocal responses cannot. I say to my staff all the time, “we can’t reach into his/her throat and pull out words”. So if you say to your client “What color is the sun? YELLOW” and they just stare at you, then that was a “no response” trial.

Many, many moons ago I worked at an early intervention clinic. We had one client in particular there, let’s call him Sam. Sam was the bane of my existence for a while, because he made me feel like an incompetent idiot.

 See, Sam was a very bright little boy with the most beautiful smile who could sing songs, answer questions, do simple academic tasks, and engage in various play skills. But then, Sam would hit a wall in his responding. He would remove all eye contact, stop smiling, and just stare blankly at…nothing. I haven’t met anyone since who could be looking directly at you, yet not looking at you at the same time. When Sam got like that he would not emit any of his target responses independently. This meant all motor actions were prompted, and good luck trying to do anything that required vocalizing. I just did not know what to do when this would happen, and it made me nervous to work with Sam because I knew it wouldhappen at some point.

Sam is who I think about when I am working with staff who are having a hard time “connecting” with a client in the session. I can absolutely relate to how it feels to bring your A-game, put on your animated face, and get a lot of nothing in return. It’s frustrating, and makes you doubt your skills.

When correct responding disappears from the session, some clients may turn super silly and distractible, or some may have a spike in aggression. Just between you and me, I would much rather deal with one of those scenarios. It’s the completely checked- out individual that I find to be the most difficult…..it is kind of like your clients body remained in the chair, but the rest of them got up, walked out of the building, and is headed somewhere FAR more exciting.

So if you are working with a Sam or two, here are a few things that definitely do not work, are ineffective, and should be avoided:

  • *Waiting the client out – I have seen a few therapists try this one, and usually the client is perfectly content to keep staring into space as you wait them out.
  • *Continue teaching/Keep up the status quo – Think of it like this, if your client has completely stopped any correct responding and you just keep plugging away: Is learning happening?
  • * Speak louder – Sound silly? I see it a lot, and back in the day I was guilty of this one too.
  • * “Saaaam…..Sam!….Helloooooo, Sam?” – If your client is not responding to demands to touch, give, open, or talk, odds are they also will not respond to their name being called.

Now that we got all the stuff that does not work out of the way, I really only have one suggestion for what you SHOULD try when those non- responsive blues kick in. It may be just one suggestion, but it can look about 900 different ways depending on the learner. 

Change something about YOU.

What my staff usually say to me (and how I used to look at this back in the day) is: “I tried this, and that, and this, and Sam just won’t attend/listen/respond! I don’t know what else to do to get him to (insert whatever response the therapist is expecting)”.

What I am suggesting, is flip that statement on its head and instead ask yourself: “What can I do differently that will motivate Sam to respond? Am I interesting? Am I reinforcing? Would I want to attend to me? Is this program interesting? Are these materials engaging? When did I last reinforce any of his behavior? Is my frustration/annoyance showing on my face? Does my voice sound irritated? Am I moving through targets too quickly? Too slowly? How can I be more fun?”.

See the difference? Instead of unintentionally blaming Sam for his lack of responding, first blame yourself. Then, look at your options and start trying them out to see what is effective.  I am a big fan of “Let’s try this and see what happens”. Even if you try something and it fails, you just learned 1 thing that does NOT work. Which is still progress.

About The Author: Tameika Meadows, BCBA

“I’ve been providing ABA therapy services to young children with Autism since early 2003. My career in ABA began when I stumbled upon a flyer on my college campus for what I assumed was a babysitting job. The job turned out to be an entry level ABA therapy position working with an adorable little boy with Autism. This would prove to be the unplanned beginning of a passionate career for me.

From those early days in the field, I am now an author, blogger, Consultant/Supervisor, and I regularly lead intensive training sessions for ABA staff and parents. If you are interested in my consultation services, or just have questions about the blog: contact me here.”

This piece originally appeared at www.iloveaba.com. 

 

Back to Basics: Core Concepts in ABA

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Over the past two decades, dozens of task forces, panels, and independent research studies have found that Applied Behavior Analysis (ABA) is the only effective intervention for autism spectrum disorder (ASD).  Although ABA is helpful for many issues other than autism, and in fact is not a treatment of autism in and of itself, the practice of the science is often linked to ASD.  I’d like to share some of the core principles of ABA that are associated with the many ways in which ABA is helpful for supporting individuals on the autism spectrum.

First, ABA works from the crucially important framework of determinism.  This means that behavior analysts see behavior as being determined by the environment.  In other words, the reasons for behavior are external, not particular to the person.  As we like to say, “The student is always right.”  This perspective is tremendously helpful because it means that there’s always something that can be done to help.  If an individual is having difficulty learning, we can adjust the environment to improve his or her ability to learn.  If someone is engaging in behavior that is dangerous or upsetting, we can adjust the environment to reduce the likelihood of that behavior.  We never try to change a PERSON; rather we attempt to change the events that occur before and after behavior, making that behavior more or less likely.

Next, ABA is highly individualized.  One of the reasons that it is so effective as a practice in teaching and supporting individuals with ASD is that each person receives a tailor-made intervention that addresses his or her needs, strengths, and preferences.  ASD does not look the same in every person who has it, therefore intervention should not look the same.  Furthermore, continuous data collection and analysis allow for continuous updating and refining of interventions, so that each individual should be receiving the most effective strategies at all times.

Finally, ABA focuses on lifestyle changes and involves parents and significant others in all interventions.  ABA is not something that is done by behavior analysts to people with autism.  Rather, it’s the practical application of the science of behavior by the people who interact with – and care for – those in need of intervention the most.  In many cases, behavioral programming is carried out by teachers or paraprofessionals, but ABA is most effective when it’s also carried out by parents, siblings, grandparents, aunts, uncles, cousins, and friends.  The design of effective strategies and ongoing analysis of outcomes should be overseen by a well-qualified behavior analyst, but the strategies themselves should involve everyone in the individual’s life.  This helps to ensure generalization and maintenance of behavior change, and to provide the individual with ASD maximum exposure to supportive strategies throughout his or her day.

For these reasons and more, ABA is the intervention of choice for individuals on the autism spectrum.  It is humane, effective, and fair.  Given the right intervention, those with ASD can achieve personal goals and reach increased levels of independence in their lives.

About The Author

Dana Reinecke is a doctoral level Board-Certified Behavior Analyst (BCBA-D) and a New York State Licensed Behavior Analyst (LBA).   Dana is an Assistant Professor and Department Chair of the Department of Special Education and Literacy at Long Island University Post.  Dana provides training and consultation to school districts, private schools, agencies, and families for individuals with disabilities.  She has presented original research and workshops on the treatment of autism and applications of ABA at regional, national, and international conferences.  She has published her research in peer-reviewed journals, written chapters in published books, and co-edited books on ABA and autism.  Current areas of research include use of technology to support students with and without disabilities, self-management training of college students with disabilities, and online teaching strategies for effective college and graduate education.  Dana is actively involved in the New York State Association for Behavior Analysis (NYSABA), and is currently serving as President (2017-2018).

Language Milestones

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How many professionals have been asked: “How do I know if my child is behind in language development?” How many parents have asked the question, or at least wondered to themselves?

Language development varies from child to child, and there are wide ranges of expected “normal” language development in young children. If you are using Stages Learning Materials products with your own child, and you are concerned about language development, you should definitely discuss this with your health care professional. However, for reference sake, in general:

By the age of one, a child is expected to achieve the following general language milestones: 

  • Respond to the speech of others verbally or through facial expressions or other simple gestures such as shaking the head up and down for “yes”
  • Pay attention to speech of others
  • Respond to simple verbal requests including the word “no”
  • Babble with inflection
  • Attempt to imitate speech of others
  • Use simple works such as “dada”, “mama” and simple exclamations such as “oh-oh!”
  • Use exclamations, such as “oh-oh!”
  • Follow simple commands or instructions
  • Point to an object or picture when it is named for her
  • Recognize names of familiar objects, body parts and familiar faces
  • Repeat words overheard in the conversation of others
  • Say several single words and simple phrases by 15-18 months
  • Use simple phrases and 2-4 word sentences by 18-24 months

By the three-four years of age, a child is expected to achieve the following general language milestones:

  • Understand the concept of “same” and “different”
  • Speaks in sentences of five to six words with an understanding of simple grammar
  • Speaks clearly enough for strangers to understand
  • Tell stories

Again, it is important to realize that all children are different, and develop at their own pace, but if you feel that your child is falling significantly behind, it may be a good idea to consult your pediatrician, speech therapist, or other child development professional to discuss a strategy to help your child reach language development milestones.

— Adapted from an article written by Dr. Jen Canter, pediatrician and inventor of the U-Play
Mat for Education

About The Author

Angela founded Stages Learning Materials in 1997 as a vehicle to publish and distribute her line of photo-based teaching tools for autism and special needs. Angela has a BA in Psychology, and a JD, both from UCLA; and an M.Ed. from Harvard Graduate School of Education from the Technology, Innovation and Education Program. 

At UCLA Angela studied behavioral psychology under Dr. Ivar Lovaas, head of the premier program in the treatment and education of children with autism. Following graduation, she worked as a senior therapist for the Center for Autism and Related Disorders, supervising educational programs, performing assessments, and conducting workshops for parents and professionals across the country and in Europe. During her graduate work at UCLA, Angela completed multiple cross-departmental courses through the MBA program at UCLA’s Anderson School of Business Management. 

Angela is currently the incoming Chair of the Education Market Association, serves as a Teaching Fellow at the Harvard Graduate School of Education, and speaks at national conferences and education institutes on autism education and early literacy. 

ABLLS-R® Skill Acquisition Program Manuals (Book 1 & 2)

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The development of these manuals is a culmination of years of clinical work involving direct ABA intervention, teaching, coaching, training, and clinical oversight to teams delivering ABA intervention.

I have always enjoyed seeing students’ progress in their learning – knowing that the foundation of ‘good teaching’ is not only based on proper training, supervision, coaching and modelling – but also a standardized teaching approach that can be individualized for each student.

With a multitude of approaches and teaching methods being used to impact the potential of a student’s learning and success, I became inspired to create a series of step-wise, quality Skill Acquisition Teaching Plans that provided a framework of consistency for Instructors and teachers who were working with the students.
I am excited to share with you the ABLLS-R® Skill Acquisition Program Manuals – created as companion manuals to Dr. James Partington’s Assessment of Basic Language and Learning Skills – Revised (ABLLS R ®). We are confident that these plans will provide users a consistent framework for skill assessment, skill teaching and skill tracking for students with autism spectrum disorders.
In conjunction with the ABLLS-R®, the contents of the manuals provide information for each of the Task Codes in the ABLLS-R® curriculum for how to:

• Assess baseline performance levels for skills/tasks within the ABLLS R®
• Arrange the teaching environment for optimal teaching and learning
• Set up and administer prompts
• Implement and embed various teaching strategies to teach a skill
• Use Error Correction Procedures
• Collect data to measure and monitor progress

Both manuals include Companion Forms and Data Templates that are used along with the written Skill Acquisition Teaching Plans. These documents offer a user-friendly structure for setting up a student’s program binder, as well as information for how to organize necessary information for teaching and monitoring student progress.
We trust you will find as much value in these manuals as we have, and that you will see continued success with your students learning.

The ABLLS-R® Skill Acquisition Program Manuals are currently available for pre-order. Head to our site for more details! 

About The Author 

Tammy J. Frazer is a Board Certified Behavior Analyst with over 18 years of experience working with individuals with autism and developmental disorders. She earned a Masters of Arts in psychology with a specialization in Applied Behavior Analysis from the University of Nevada, Reno and has been a BCBA since 2007. Tammy is the Founder and Director of On Solid Ground Inc, an organization in Barrie, Ontario that is committed to the delivery of quality, effective, and evidence based behavior assessment and intervention to individuals with autism and developmental disorders and delays.

Back to Basics: Core Strategies in ABA

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Applied Behavior Analysis (ABA) is the practice of the science of behavior. Often misunderstood as a collection of techniques (or worse, one particular technique), ABA is much more complex and is based in analysis so that all interventions are individualized, functional, and effective. That being said, there are some core strategies that are useful to know about in the application of ABA to individuals with autism.

• Reinforcement is probably the best known and most widely recognized ABA strategy. The principle of reinforcement is simple: behavior that is followed by preferable outcomes increases in future probability. If the preferable outcome is something given, like praise, a toy, or a fun activity, that’s called positive reinforcement. If the preferable outcome is something taken away, like work being removed during a break, or an unpleasant noise stopping, that’s called negative reinforcement. Contrary to popular belief, negative reinforcement is not the reduction of behavior or the application of punishment. Both positive and negative reinforcement are highly individualized and will look different for different people, but the principles remain the same no matter who you are: behavior increases because it is followed by a preferable outcome.

• Prompts are another commonly used strategy in ABA, and they also look different for different people. Prompts are any stimuli added to the natural environment to make behavior more likely. We all use prompts throughout our daily lives, often without realizing it. Smart phone reminders, highway signs, and fire alarm bells are all every day prompts. Additional prompts may be added to support individuals with autism in many ways. For example, some children with autism are taught to follow activity schedules, which are prompts for sequences of actions. These prompts may be used to help the child to be more independent in an activity of daily living, like making a sandwich, or just to transition between play activities and remain actively and appropriately engaged for longer periods of time.

• Structured teaching procedures are often used to break down and teach important skills such as communication, social skills, self-care skills, and academics. Sometimes these procedures are highly structured and repetitive, such as discrete-trial teaching, and sometimes they are looser and less structured, such as natural-environment teaching. Most individuals with autism who are learning using these strategies are provided with a combination of more and less structured learning opportunities, depending on their individual needs.

• Self-management is the set of skills that enables independence. For many individuals with autism, these skills need to be explicitly taught. ABA programs should include opportunities to learn and use self-management skills, as the ultimate goal of any ABA intervention should be independence.

About The Author 

Dana Reinecke is a doctoral level Board-Certified Behavior Analyst (BCBA-D) and a New York State Licensed Behavior Analyst (LBA).   Dana is an Assistant Professor and Department Chair of the Department of Special Education and Literacy at Long Island University Post.  Dana provides training and consultation to school districts, private schools, agencies, and families for individuals with disabilities.  She has presented original research and workshops on the treatment of autism and applications of ABA at regional, national, and international conferences.  She has published her research in peer-reviewed journals, written chapters in published books, and co-edited books on ABA and autism.  Current areas of research include use of technology to support students with and without disabilities, self-management training of college students with disabilities, and online teaching strategies for effective college and graduate education.  Dana is actively involved in the New York State Association for Behavior Analysis (NYSABA), and is currently serving as President (2017-2018).

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.

How to Manage the Impact of Child with a Disability on Siblings

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This month’s ASAT feature comes to us from Mary Jane Weiss, Ph.D., BCBA-D,LABA and Nicole Pearson, BCBA-D. 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 mother of three children, one of whom has autism and requires a tremendous amount of time and care. I worry about how this is impacting my other children, both of whom are a few years older and are very aware of how our family has changed as a result of their sibling’s diagnosis. Do you have any advice on how to best address this with them?

Answered by: Mary Jane Weiss, Ph.D., BCBA-D,LABA
Professor of Education and Director of Programs in Autism and Applied Behavior Analysis, Endicott College and
Nicole Pearson, BCBA-D
Founder, West Side Behavioral Associates

Having a child with autism spectrum disorder inevitably impacts the entire family. From the stress and anxiety that accompanies the initial diagnosis to the time-intensive nature of navigating treatment options and providers, raising a child with autism presents unique challenges for parents. It can also present challenges for siblings as the sibling relationship is inevitably different from that of typical siblings. And while many of these differences can be positive and rewarding, it’s important for parents to be aware of the needs of siblings so that they can provide meaningful guidance and support.

While children of younger ages may not be fully aware of their sibling’s disability, they likely detect parental stress, perceive inequities in the amount of time and attention given and struggle with a sense of disruption in overall family life (Feiges & Weiss, 2004; Smith & Elder, 2010). As children age and their awareness grows, siblings may experience adjustment difficulties. These difficulties are influenced by such factors as sibling age and gender as well as family size. Siblings closer in age to the child with autism, and those who are younger and have not yet developed effective coping strategies can be more affected. However, as a parent, there are many strategies you can take to support sibling coping and adjustment.

Foster a supportive environment at home: Siblings are often aware of how different their experiences are from that of others, especially their friends. As a result, they may feel many emotions, including fear, anger, embarrassment, resentment and guilt, among others. Encouraging an environment of open communication allows the sibling to safely express negative emotions and frustrations. Listen to and reassure your child that it’s okay to have these feelings, and offer suggestions on how to work through them together. Doing so also helps with positive coping and establishes a foundation for good familial communication and problem solving.

Further, as siblings become aware of such differences, they will likely look to their parents and family members for guidance. Thus, parent coping and adjustment play an important role in sibling adjustment. As such, it is important for parents to be cognizant of the impact their actions, behaviors and decisions will have on all of their children.

Ensure your child understands what autism is: Parents sometimes overestimate their typical child’s understanding of autism as the child may be able to explain what it is without fully comprehending it. They may also pick up on information they overhear but likely have more questions than answers. Making sure that siblings have developmentally-appropriate information will help reduce their fears and misconceptions (Glasberg, 2000; Harris & Glasberg, 2003). These explanations can go a long way in influencing how siblings view and interact with their sibling with autism and how well they are able to explain autism to their peers.

When speaking with children under age nine, parents should keep explanations brief and frame the sibling with autism’s deficits in the context of having not yet learned or mastered particular skills, such as playing with others or communicating in ways that other children do. For example, saying, “Your sister learns a bit differently than you and me, so she needs extra help” or “Your brother may not be able to talk but we are teaching him other ways to show us what he wants to say.”

As children age, explanations can be more involved, such as sharing that autism is a problem in the brain and that it presents differently in each child. Depending on the extent of the child with autism’s behavioral problems, it may be necessary to help the sibling understand why they’re occurring and their role in behavioral escalations. Such escalations can be scary, embarrassing and disruptive for typical siblings so providing them with clear explanations can help alleviate some of these feelings. Regardless of the children’s age, parents should offer reassurance (especially of safety) to typical siblings, and convey love and acceptance of everyone in the family.

From a timing perspective, starting to discuss autism with siblings at an early age can be helpful, especially before they begin school or start having friends over. That way, they can be prepared with information about how to explain what may appear to be usual or different behavior in their sibling with autism. There are several free online resource guides available:

• Autism Speaks offers a “Siblings Guide to Autism” toolkit designed for siblings ages 6-12 that parents and siblings can read together to learn more about autism and facilitate conversation about it
• Organization for Autism Research’s “Kit for Kids” offers an illustrated booklet for elementary and middle school students, called “What’s up with Nick?” and “Autism, my sibling, and me”

Promote meaningful relationships between siblings: While every sibling relationship is special, the communication and socialization deficits inherent in autism diagnoses can make sibling bonding more difficult. Creating opportunities for younger children to play together or helping older siblings to find common interests, even if it’s as simple as doing a puzzle together or playing a video game, can go a long way in increasing the quality and quantity of interactions and ultimately building sibling bonds.
Another way to foster meaningful relationships between siblings is to teach your typical children how to be mentors to their younger sibling with autism. Doing so can be very fulfilling for siblings and promote feelings of self-efficacy and nurturing. It also creates opportunities for siblings to engage with one another socially and have positive interactions with their sibling with autism. Prior to starting, make sure that your typical children understand their sibling with autism’s skills, preferences and interests and start with easy tasks to ensure success. Such tasks might include modeling how your typical siblings can engage in simple toy play or teach their sibling with autism a basic daily living skill like putting on a coat or how to wash hands. Other skills that can be useful to teach include:

• how to get your sibling with autism’s attention,
• how to provide praise and reinforcement when he does well,
• how to assist him when he cannot do something,
• how to help him stop playing and clean up.

Build in one-on-one time for each sibling and foster individuality: Siblings are inevitably affected by the inordinate amount of time, energy and resources that are spent caring for their sibling with autism. Further, activities common in typical family life such as all spending time together, going to a movie or on vacation may be more limited. While inequities exist in all families, they are intensified in a family who has a child with autism. And if typical siblings feel dissatisfied with these inequities, their relationship with their sibling with autism is negatively impacted (Rivers & Stoneman, 2008). To help minimize the impact of these inequities, it’s important to make time for one-on-one interaction with each sibling. While this can seem difficult in the throes of managing busy schedules and the demands of therapies, carving out even a small amount of time where you’re giving your child your undivided attention can go a long way. So whether its running errands together or going for pizza, make time to check-in with your other children and let them know that even though they may not always get as much attention as their sibling, they’re loved and cared for equally.

And while having a child with autism is a 24/7 commitment, helping to foster distinct roles and interests in each child can further reduce the stress that siblings may feel. Encourage siblings to get involved in sports, clubs or other community activities where they can develop relationships with peers and just have fun. Doing so allows them the time and space to be their own person and establish a sense of individuality not defined by their sibling with autism (OAR, 2014). Ultimately, it may also make siblings more available to enjoy spending time with their sibling with autism.

Consider additional sources of support: Finally, sibling groups can be a helpful source of support. They provide siblings the chance to meet and speak with others who are going through similar experiences and can give them accurate and age-appropriate information about autism. Often these groups can help reduce fear and misconceptions among siblings as well as the feelings of isolation many experience. If a support group isn’t readily available within your children’s school or your community, consider looking at some of the following resources for more information:

• Sibling Support Project – offers more than 475 community support programs, called SibShops, for younger siblings of children with special needs.
• Online resources: There are several online communities for siblings, both teens and adults:
     o      SibTeen, an online Facebook group for teen siblings: https://www.siblingsupport.org/connect-with-others-sibs/meeting_other_sibs_online/sibteen
     o     SibNet online forum for adults: https://www.siblingsupport.org/connect-with-others-sibs/meeting_other_sibs_online/sibnet

The Organization for Autism Research (OAR) has also developed the “Autism Sibling Support Initiative” offering helpful resource guides for young children, teens and parents.

While much is often said about the challenges faced by siblings of people with autism, there are also substantial positive outcomes. Most siblings who reflect on the experience in adulthood attribute their high levels of compassion, tolerance, patience, and concern for others to having had a sibling with special needs. Furthermore, many of them develop a sense of mission and enter helping professions.

There is no universal description of the ways in which this role changes the lives of siblings of children with autism. And every sibling pair is on their own unique journey. But while this is a role that is not chosen by the sibling, it is a role that most siblings truly embrace. Parents can help their typically developing children by creating an environment of transparency and openness about autism and about issues arising in the family associated with it. They can help siblings find effective ways to interact with their brother or sister with autism, and can foster mentorship roles for them with their sibling. Parents can also ensure that every child in the family gets needed attention and permission to pursue their own dreams. Finally, they can remember that most siblings of children with autism end up being compassionate human beings who treasure their sibling and who note both the struggles and the strength that the family experienced as a result of being touched by autism.

Note: This submission was adapted from Drs. Weiss and Pearson’s book chapter, “Working effectively with families of children with autism spectrum disorders: understanding family experience and teaching skills that make a difference” which appeared in “School success for kids with autism.”

References:
Feiges, L.S., & Weiss, M.J. (2004). Sibling stories: Growing up with a brother or sister on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Company
Glasberg, B.A. (2000). The development of siblings’ understanding of autism and related disorders. Journal of Autism and Developmental Disorders, 30, 143-156.
Harris, S.L., & Glasberg, B.A. (2003). Siblings of children with autism. Bethesda, MD: Woodbine House.
Organization for Autism Research (OAR). (2014). Brothers, sisters and autism: A parent’s guide to supporting siblings. Retrieved from: http://www.researchautism.org/family/familysupport/documents/OAR_SiblingResource_Parents_2015.pdf
Rivers, J. W., & Stoneman, Z. (2008). Child temperaments, differential parenting, and the sibling relationships of children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 1740-1750.
Smith, L. O., & Elder, J. H. (2010). Siblings and family environments of persons with autism spectrum disorder: A review of the literature. Journal of Child and Adolescent Psychiatry Nursing, 23, 189-195.
Weiss, M. J., & Pearson, N. K. (2012). Working effectively with families of children with autism spectrum disorders: Understanding family experience and teaching skills that make a difference. A. L. Egel, K. C. Holman, & C. H. Barthold (Eds.). School success for kids with autism. Waco, TX: Prufrock Press.

Please use the following format to cite this article:
Weiss, M. J. (2016). Clinical Corner: How to Manage the Impact of Child With a Disability on Siblings. Science in Autism Treatment, 13(2), 22-26.

Mary Jane Weiss, Ph.D., BCBA-D, LABA is a Professor at Endicott College, where she directs the Master’s Program in ABA and Autism and is a mentoring faculty member in the Doctoral program. She also does research at Melmark. Dr. Weiss has worked in the field of ABA and Autism for over 30 years. She received her Ph.D. in Clinical Psychology from Rutgers University in 1990 and she became a Board Certified Behavior Analyst in 2000. She previously worked for 16 years at the Douglass Developmental Disabilities Center at Rutgers University, where she served as Director of Research and Training and as Clinical Director. Her clinical and research interests center on defining best practice ABA techniques, exploring ways to enhance the ethical conduct of practitioners, evaluating the impact of ABA in learners with autism, teaching social skills to learners with autism, training staff to be optimally effective at instruction, and maximizing family members’ expertise and adaptation. She serves on the Scientific Council of the Organization for Autism Research, is on the Professional Advisory Board of Autism New Jersey, is a regular reviewer for a variety of professional journals, and is a frequent member of service committees for the Behavior Analyst Certification Board. She is also a Past President of the Autism Special Interest Group of the Association for Behavior Analysis International, a former member of the Board of the Association for Professional Behavior Analysts, and a former Vice President of the Board of Trustees for Autism New Jersey.

Dr. Nicole Pearson is a licensed psychologist and Board Certified Behavior Analyst (BCBA-D) who has specialized in working with individuals with autism and other developmental disabilities for almost a decade. Dr. Pearson received her initial training in Applied Behavior Analysis (ABA) at the Alpine Learning Group and went on to work in a number of other public and private educational settings, including NYC Autism Charter School where she served as Director of Education. She has also worked with autism programs internationally in Kenya and the Maldives. Most recently, Dr. Pearson served as a Behavioral Psychologist at St. Mary’s Hospital for Children, working with children with complex medical needs and training clinical staff in treatment protocols. She holds Masters and Doctoral degrees in Psychology from Fairleigh Dickinson University and a BS in Business Administration from Villanova University.