Tag Archives: developmental disabilities

10 Things Autism Awareness SHOULD Be About

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We’re so thrilled to be kicking off Autism Awareness Month with a special guest article from the Executive Director of the Association for Science in Autism Treatment (ASAT) David Celiberti, PhD, BCBA-D, who shares with us 10 things autism awareness should be about. David has also provided a wealth of information and resources for parents and professionals to utilize in finding the best treatments out there, seeking out reliable research and asking good questions, helping individuals with ASD find a place in the workforce, and much more. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

10 Things Autism Awareness SHOULD Be About

10 Things Autism Awareness SHOULD Be About
by David Celiberti, PhD, BCBA-D

April is Autism Awareness Month. The blue puzzle pieces will appear on thousands of Facebook pages and billboards, and the media will give greater attention to, and information about autism. Further awareness is a wonderful thing, as detection and diagnosis are necessary first steps to accessing help in the form of treatment, information, and support. With well over 400 treatments from which to choose, parents of children with autism need guidance, tools, and accurate information to make the best possible choices for their children: choices that will undoubtedly have a profound impact on both their current quality of life and their children’s future.

Clearly, autism spectrum disorder (ASD) is no longer the rare diagnosis that it once was. With the incidence of one in 68 children, and one in 42 boys, our own families, neighbors, and co-workers are all touched by autism. In fact, the sheer numbers have heightened awareness of autism in and of themselves. This awareness is essential: it promotes early detection, and with early detection, we hope for a relatively clearer course toward effective treatment and better outcomes. Sadly, however, the early detection of autism alone does not always mean a seamless path to intervention. Furthermore, families whose children are diagnosed with autism are still not able to expeditiously access the most effective science-based treatments available. Instead, families often have to sort through over 400 pseudo-scientific treatments until they arrive at the most effective and research-proven intervention in addressing the complex disorder of autism. We must do better!

“Autism Awareness” should be about more than just detection and diagnosis. It has always been ASAT’s hope that the conversation around autism awareness would be broadened to focus upon the obstacles that separate individuals with autism from effective, science-based intervention and distract their families, caregivers, and teachers from accurate information about effective autism intervention. Below are 10 ideas about what Autism Awareness should be about, along with ways that the Association for Science in Autism Treatment (ASAT) can assist families and providers in navigating the complex maze of autism treatment options.

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Autism treatment is a multi-million dollar industry. For the majority of the 400+ available interventions, science is overlooked in favor of pseudoscience, and they are marketed with heart-wrenching testimonials, anecdotes and video montages, and often bolstered with poorly crafted and misleading surveys. Many boast inaccurate and even outrageous claims that are touted as evidence of effectiveness. Aggressive marketing of these so-called “therapies” and “cures” is absolutely overwhelming and it drowns out accurate information for parents who are desperate to help their children.

For most other medical conditions, a provider who disregards a proven intervention in favor of using a “fringe” treatment could be sued for malpractice! Such safeguards do not widely exist for autism treatment. We do no favors for children with autism, their families, and those charged with providing effective services when we not only ignore quackery, but allow it to proliferate by failing to counter baseless claims. Families deserve better. Individuals with autism deserve better. Visit our website to learn more about the scientific support behind various autism treatments, the relevance of peer-reviewed research, the pitfalls of testimonials, as well as many other articles related to becoming a more savvy consumer. Please also see our review of Sabrina Freeman’s book, A Complete Guide to Autism Treatments.

As adults, voters, consumers, providers, and parents, choice underlies all of our decisions. Decision-making power comes with tremendous responsibility. There is a myriad of stakeholders whose decisions have profound implications for children and adults with autism – not just parents, but siblings, teachers, treatment providers, administrators, program coordinators, and taxpayers.

  • Scientists need to take responsibility in making their findings about an intervention’s effectiveness clear, unambiguous, and unexaggerated. Efforts should be taken to promote replication.
  • Administrators and program leaders need to take responsibility in identifying internal and external training opportunities that further their staff’s competence with evidence-based practice. Additionally, they should make sure their staff receives the support needed to sustain these efforts and to continually engage in data-based decision making when both selecting and monitoring interventions. They must be savvy and selective in their selections of trainings for their staff and not fall prey to gimmicks, splashy sales pitches or fads.
  • Providers need to select procedures that are based on published research, adhere to their discipline’s ethical guidelines about evidence-based practices, and maintain a commitment to ensuring that parents have truly been given the opportunity to provide informed consent. For example, if there is no scientific evidence to support an intervention that one is using, then it is an ethical obligation of the professional to inform parents of this lack of evidence. Please see Principle #1 and #2 of the Ethical Code for Occupational Therapists, Section 2.04 of the Ethical Principles of Psychologists and Code of Conduct, and Section 2 of the Guidelines for Responsible Conduct for Behavior Analysts.
  • Parents must continue to exercise caution in sorting through autism treatment options to make the best possible choice for their children, particularly since many providers do not make the path to effective treatment clear and simple.

There are far too many individuals with autism who do not have access to effective treatment, are receiving ineffective treatment, or are subjected to treatments that are, in fact, dangerous. Every minute of ineffective intervention is one less minute spent accessing effective intervention. Every dollar spent on an intervention that does not work depletes resources available for interventions that do work. For questions to ask to make sure that the individual with autism in your life is receiving science-based treatment, please see our article on questions to ask marketers and read more about the following three phases of inquiry about particular interventions and their associated questions and considerations in The Road Less Traveled: Charting a Clear Course for Autism Treatment:

  • Phase I: Exploring the viability and appropriateness of a particular treatment approach.
  • Phase II: Assessing the appropriateness of an intervention under the supervision of a specific service provider for a specific individual with autism.
  • Phase III: Monitoring the implementation of the treatment and evaluating effectiveness.

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As we know, not all information on the Internet is reliable and accurate. You have probably heard the term, caveat emptor (“Let the buyer beware”). Consumers must also practice caveat lector (“Let the reader beware”).

Often Internet information is deemed equivalent in relevance, importance, and validity to research published in peer-reviewed scientific journals, but it is not. Testimonials and uncontrolled studies from so-called researchers can lead parents astray and be a tremendous source of distraction. Parents of newly-diagnosed children may be particularly vulnerable. Know the red flags to avoid and learn how to evaluate research by visiting our website. Our library of articles highlights scientific concepts and methods as they relate to potential autism interventions, with the goal of providing families, educators and clinicians with the information they need in order to be savvy consumers of marketed treatment products and therapies.

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Pick of the Week: Token Tower– Fun, motivating, and reinforcing!

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Keep students motivated and focused with these fun, noise-making Token Towers! Set goals using the colored ring and insert tokens as reinforcement for appropriate behaviors or correct responses. The hard plastic chips with smiley faces make a fun noise as they drop into the containers, which is almost as fun as watching the tokens pile up!

DRP_238_Token_Tower

This week, save 15%* on your set of the Token Towers by applying our promo code TOWERS at check-out.

The set includes four Token Towers – in colors red, yellow, green, and blue – and 140 tokens (35 for each tower). Each Token Tower has target goal levels of 5, 10, 15, 20, 25, and 30, and can hold a maximum of 35 tokens. The towers measure 6½ inches tall, with tokens measuring 1½ inches in diameter.

*Offer expires on March 15, 2016 at 11:59pm EST. Be sure there are no spaces or dashes in your code TOWERS at check-out. Call our friendly customer service team at (800) 853-1057 with any inquiries.

Pick of the Week: Clue Cards – 5 games in one to teach socioemotional skills

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Clue Cards teaches students how to interpret social situations, read facial expressions, and understand metaphorical forms of speech. This week, you can save 15%* on Clue Cards – just enter promo code CLUECARDS when you check out online! Play 5 different games to teach inferencing, faces and feelings, body language, exploring Wh- questions, and a variety of common idioms!

Therapists, teachers and parents can uses the cards and games included in this set to help students perceive and understand the details of social presentation. Because the cards are flexible and adaptable, they can be used with both younger and older children, with mild or sever socioemotional difficulties. There are instructions for 5 different games along with 100 reward chips, targeted for players ages 6–16.

  1. Get a Clue: Players find “clues” in social situations and make inferences based on those clues (15 Social Situation Cards).
  2. Faces and Feelings: Link expressions with associated emotions (20 Feeling Cards, 20 Faces Cards).
  3. Body Language: Matching photos and captions, children explore body language for clues about thoughts and feelings (24 Photo Cards, 24 Caption Cards).
  4. The 5 W’s: Analyze 10 social scenes by asking “who-what-where-when-why” questions (10 Social Scene Cards, 1 Spinner).
  5. In Other Words: Learn the idioms and proverbs that often pop up in social conversation (30 Idiom Cards, 30 Idiom Definition Cards, 26 Proverb Cards, 26 Proverb Definition Cards).

*Offer lasts through March 1, 2016 at 11:59 PM EST. Be sure there are no spaces or dashes in your code CLUECARDS at check-out! Not valid on past purchases.

“Underwater Basket Weaving Therapy for Autism: Don’t Laugh! It Could Happen…” by David Celiberti, PhD, BCBA-D & Denise Lorelli, MS

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This month’s featured article from the Association for Science in Autism Treatment (ASAT) is by Executive Director David Celiberti, PhD, BCBA-D and Denise Lorelli, MS on the abundance of so-called “therapies” available for children with autism, why some fall trap to these “therapies,” and how to assess what therapy is right, and most importantly, effective in the long run. 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!

Underwater Basket Weaving Therapy for Autism: Don’t Laugh! It Could Happen…
by David Celiberti, PhD, BCBA-D and Denise Lorelli, MS

Yes, sadly it can happen. With 400+ purported treatments for autism, there is no shortage of such whose name begins with an activity, substance, or favorite pastime and ends in the word “therapy.” A cursory internet search would reveal such “therapies” as music therapy, art therapy, play therapy, sand therapy, dolphin therapy, horseback riding therapy, bleach therapy, vitamin therapy, chelation therapy, and helminth worm therapy joining the list of the more established habilitative therapies such as physical therapy, occupational therapy, and speech-language therapy (this is by no means an exhaustive list of the array of “therapies” that are marketed to consumers). Touted therapies can involve all sorts of things. I recall sitting on a panel at Nova University in the late ‘90s with another provider boasting the benefits of llamas and lizards as well.

What concerns us are the assumptions – made by consumers and providers alike – that promoted “therapies” have legitimate therapeutic value, when, in fact, there is often little-to-no scientific evidence to support them. Some might rightfully say that many of these touted methods are “quackery” without such evidence. The focus on such unproven methods or “therapies” may result in financial hardship and caregiver exhaustion, further exacerbating the stress levels of participating families. What is most alarming is that these “therapies” may be detrimental because they may separate individuals with autism from interventions that have a demonstrated efficacy, thus delaying the time of introduction of effective therapy.

This concern is echoed by the American Academy of Pediatrics. In their guidelines focusing on the management of autism spectrum disorders, they state: “Unfortunately, families are often exposed to unsubstantiated, pseudoscientific theories and related clinical practices that are, at best, ineffective and, at worst, compete with validated treatments or lead to physical, emotional, or financial harm. Time, effort, and financial re-sources expended on ineffective therapies can create an additional burden on families” (p. 1174).

If a child diagnosed with cancer were prescribed chemotherapy, there is a reasonable expectation that chemotherapy would treat or ameliorate the child’s cancer. Parents of individuals with autism have that hope as well when their children are provided with various therapies. While this hope is understandable, it is often placed in a “therapy” for which there is an absence of any legitimate therapeutic value. We hope the following will help both providers and consumers become more careful in how they discuss, present, and participate in various “therapies.”

SOME FAULTY ASSUMPTIONS REGARDING “THERAPIES”

1. Anything ending in the word “therapy” must have therapeutic value. The word “therapy” is a powerful word and clearly overused; therefore, it would be helpful to begin with a definition. Let’s take a moment and think about this definition:

Merriam-Webster
Therapy: noun \ˈther-ə-pē\ “a remedy, treatment, cure, healing, method of healing, or remedial treatment.”

When a “therapy” provider or proponent uses the word “therapy,” he/she is really saying: “Come to me…I will improve/treat/cure your child’s autism.” The onus is on the provider/proponent to be able to document that the “therapy” has therapeutic value, in that it treats autism in observable and measurable ways or builds valuable skills that replace core deficits.

2. Providers of said “therapy” are actually therapists. It is not unreasonable for a parent or consumer to assume that the providers of particular “therapies” are bona fide therapists. It is also reasonable for a parent to believe that someone referring to him/herself as a therapist will indeed help the child. However, simply put, if an experience is not a therapy, then the provider is not a therapist. He or she may be benevolent and caring, but not a therapist.

Some disciplines are well established and have codified certification or licensed requirements, ethical codes, and practice guidelines (e.g., psychology, speech-language pathology, occupational therapy). Consumers would know this, as “therapy” providers will hold licenses or certifications. Notwithstanding, consumers can look to see if the provider has the credentials to carry out a particular therapy, and these credentials can be independently verified (please see https://www.bacb.com/index.php?page=100155 as an example). A chief distinction is that licenses are mandatory and certifications are voluntary. In the case of licensure, state governments legislate and regulate the practice of that discipline. It cannot be over-stated that just because a discipline has certified or licensed providers it does not necessarily mean that those providers offer a therapy that works for individuals with autism. This segues into the third assumption.

3. All “therapies,” by definition, follow an established protocol grounded in research and collectively defined best practices. Let’s revisit our chemotherapy example. Chemotherapy protocols have a basis in published research in medical journals and are similarly applied across oncologists. In other words, two different oncologists are likely to follow similar protocols and precise treatments with a patient that presents with similar symptoms and blood work findings. This is not the case with many autism treatments. Most therapies lack scientific support altogether and are often carried out in widely disparate ways across providers often lacking “treatment integrity.”

4. If “XYZ therapy” is beneficial for a particular condition, it would benefit individuals with autism as well. Sadly, this kind of overgeneralization has been observed and parents of children with autism are often misled. Suppose underwater basket weaving was demonstrated through published research to improve lung capacity. Touting the benefits of this as a treatment for autism would clearly be a stretch. Therapeutic value in autism must focus on ameliorating core symptoms and deficits associated with autism such as social challenges, improving communication skills, and reducing or eliminating the behavioral challenges associated with autism.

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“Increasing Articulation in Children with Autism” by Tracie Lindblad

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Following our last feature on guided playdates, we’ve partnered with the Association for Science in Autism Treatment (ASAT) again this week to bring you an article by Tracie Lindblad, Reg. CASLPO (SLP), MS, MEd, BCBA, on increasing speech intelligibility in children with autism. To learn more about ASAT, please visit their website at www.asatonline.org. You can also sign up for ASAT’s free newsletter, Science in Autism Treatment, and like them on Facebook!

How do you increase speech intelligibility (articulation skills) or the variability in the sounds produced by children with autism spectrum disorders?
Answered by Tracie L. Lindblad, Reg. CASLPO (SLP), MS, MEd, BCBA
Approximately 30–50% of individuals with autism spectrum disorder (ASD) remain minimally verbal throughout their lives, with little or no functional speech (National Institutes of Health & National Institute on Deafness and Other Communication Disorders, 2010; Johnson, 2004; Mirenda, 2003). These individuals may rely on more effortful modes of communication such as reaching for desired items, taking another’s hand to gain access, or obtaining the item independent of communication. Attempts to communicate may also take the form of challenging behaviours such as aggression, self-injury, and tantrums.

Parents face a difficult task in choosing a treatment for minimally verbal children with ASD because a wide range of techniques are routinely used by speech-language pathologists and behaviour analysts with varying degrees of success and evidence.

The following table highlights some of the most-commonly implemented interventions to target speech skills and the current evidence base for each.

Increasing Articulation Table 1Increasing Articulation Table 2

Within the fields of behaviour analysis and speech pathology, evidence-based practice (EBP) should shape and guide our treatment decisions. EBP is the integration of:

  • external scientific evidence,
  • clinical expertise/expert opinion, and
  • client/patient/caregiver perspectives.

Principles of EBP can help any professional to provide high-quality services which reflect the interests, values, needs, and choices of the individuals, and promote the best outcomes possible with the current evidence to date. Continue reading →

Pick of the Week: Sensible Pencil – A Handwriting Program

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Created by Linda C. Becht, Sensible Pencil is a step-by-step handwriting program developed for students with special needs. With 200 sequential worksheets, new writers will learn how to write quickly and efficiently. This week, you can save 15%* on Sensible Pencil with promo code PENCIL15 at check-out!

Sensible Pencil is presented in notebook format and contains 200 reproducible worksheets, a progress chart, and a manual. With this handwriting program, the student can start with simple horizontal and vertical lines presented in fun ways, and then go on to other basic lines needed for handwriting skills.

Don’t forget to use promo code PENCIL15 when you check out online to take 15% off* your order of Sensible Pencil: A Handwriting Program!

*Offer is valid until 11:59pm EST on November 10th, 2015. Not compatible with any other offers. Be sure there are no spaces or dashes in your code at checkout!

Pick of the Week: Occupational Octaves Piano Curriculum for Students with Special Needs

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Occupational Octaves Piano is the first of its kind curriculum written in the special-needs-user-friendly language of music. Named Lee Stockner’s Music Box Method, this unique piano program has been enriching the lives of students with Autism through music since 2009. This week only, we’re offering 15%* off any or all 3 of the Occupational Octaves Piano Books within the curriculum. Just use our promo code OCTAVES at check-out!

The original language of music can be a confusing symbolic language that should perfectly instruct a student as to which notes, fingers and beats to play. Occupational Octaves Piano students read the same instructions, not through the traditional presentation of confusing musical symbols, but through colored letters in rhythmically designed boxes. This means that students on the autism spectrum, including those with severe disabilities, can play the same songs as a traditional player with the same notes, fingers and beats as a mainstream student would. Each curriculum music book comes with a set of rings that are placed on the player’s fingers to help them match their hands to the notes they’re seeing.

Hundreds of students with autism have successfully learned to play the piano using this method. Give your students the gift of music with the Occupational Octaves Piano curriculum series. This program is a revolutionary approach that develops cognitive, physical and emotional gains to a wide variety of soon-to-be musicians!

Don’t forget to take 15% off* your order of any or all 3 of the Occupational Octaves Piano Books this week only by using promo code OCTAVES at check-out!

*Offer is valid until 11:59pm EST on August 18th, 2015. Not compatible with any other offers. Be sure there are no spaces or dashes in your code at checkout!

Pick of the Week: NEW! Function Wheels – A Behavioral Identification and Intervention System

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We’re absolutely thrilled to introduce Function Wheels, an easy-to-use system that enables users to identify the function of behavior and immediately intervene. Created and piloted by Keith Amerson, MSEd, Different Roads to Learning is a proud partner in bringing you the first all-inclusive, systematic approach for identifying the functions of problem behaviors and implementing research-based interventions to manage them.

Get your kit today at the introductory price of $149.95 through July 31st! No promo code necessary.

Click to enlarge.

Be sure to check out this nifty video below for a more in-depth look at the Function Wheels Kit!

Tip of the Week: Two Essential Considerations When Toilet Training Boys

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Last year, I had the opportunity to interview Gary Weitzen, the Executive Director of POAC Autism Services and the Autism Shield Program. (You can see the blog post about that interview here.) In the months since our interview, many of his comments have stuck with me, but one in particular has impacted my daily work with students. He said, “A lot more boys have autism than females but the vast majority of educators in special ed, and in particular with autism, are females.” He went on to provide examples of how this fact influences some skill development, specifically with toilet training.

Child on Toilet 2 BlogThis leads to several considerations to take into account when toilet training boys. I agree with Weitzen that some of these issues arise from the simple fact that women are predominantly toilet training boys. However, it’s also possible that such issues arise from the fact that many boys are trained in early intervention or preschool years without consideration of the implications of those training techniques several years down the line, and without further intervention or training later in life. Either way, it’s important to recognize that training of life skills should be completed in such a way as to develop effective skills that are similar to those of the child’s same-age peers. To that end, here are two considerations:

Consider hygiene. Something I had never thought about prior to my conversation with Weitzen is that after boys use the bathroom, then zip up their pants, it’s easy for a little urine to drip onto their pants. Especially once children reach upper elementary and middle school grades, a spot of urine can be socially isolating or an invitation for bullying. Weitzen acknowledges that it can be difficult to teach boys to gently shake their penis before zipping up, especially because teachers don’t want to inappropriately touch the students. However, for the long term, it’s essential that teachers find a way to teach this simple action.

Consider the topography of the behavior. When we think about topography, we basically mean, “What does the behavior look like.” When initially toilet training, teachers will typically have the student pull his/her pants down to the floor. Weitzen shared a personal experience from several years ago, when he was a chaperone on a field trip with his son who is autistic. At one point, the teachers asked him to take the boys to the bathroom, so Weitzen went in with eight 14-year-old boys with autism. He said, “They took their pants and pushed them right down to their knees at the urinal at Medieval Times. So we had seven hairy tushies in the room. Out in public! And what happens is other dads and other boys came in there and everyone’s laughing and commenting and pointing.” This is the type of situation that teachers and parents do not want students to experience. When toilet training, it’s essential to recognize that the topography of the behavior in the male restroom is to unzip the pants, and then pull the fabric aside in order to urinate in the urinal. While it may be easier to teach students to pull their pants down in the initial phases of toilet training, it’s important to continue shaping behavior until it has the appropriate topography.

If our students continue to pull their pants down completely, they become targets for bullying, or worse. Weitzen says that on multiple occasions, he’s had parents report to him that their child used the bathroom at the urinal, and when they pulled their pants to the floor, another student took a picture of them. “Four different moms told me that, and if four moms told me that, I can’t imagine how often that’s happening,” Weitzen said. “And even if they’re not sharing the photo, well now you’re the weird kid who sticks his butt out. And you’re isolated and you’re picked upon, so we have to be real. We have to realize our guys live in the real world and teach them the skills that they need.”

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.

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.