1. Standing up for ABA: Overview of ASAT’s Media Watch Initiative (Association for Science in Autism Treatment)
2. Early Detection of Autism by Pediatricians
3. About the Association for Science and Autism Treatment
4. About the Association for Professional Behavior Analysts
5. About the Cambridge Center for Behavioral Studies
6. A Horse of a Different Color: A Review of the Effectiveness of Hippotherapy
7. Interventions for Individuals on the Autism Spectrum and How Best to Evaluate Their Effectiveness
8. The Behavior Analytic Community Unites to Support A Massachusetts Licensing Bill
9. A Response to the DSM-V

Standing up for ABA: Overview of ASAT’s Media Watch Initiative
Barbara Jamison and David Celiberti
Association for Science in Autism Treatment

Many consumers turn to the media for information about autism and its treatment. Sadly, the media’s portrayal of autism treatment is fraught with inaccuracies and misinformation.  These inaccuracies and misinformation take on several forms:

• Exaggerating the research support for an intervention for which no research exists;
• Ignoring the research basis that may already exist for the treatment in focus;
• Disregarding the relevance of science;
• Disregarding position statement from various professional organizations that warn against or discourage the use of a particular treatment  (e.g., chelation, facilitated communication); and
• Not reporting research that casts doubt or raises concerns about a particular intervention

Many articles related to applied behavior analysis (ABA) promulgate misinformation suggesting that ABA only teaches rote responding, does not address social deficits, does not promote generalization, uses “bribery,” does not work in public schools, or is just too costly.

Media Watch, one of the most recent initiatives of ASAT’s Public Relations Committee, is an attempt to respond to these concerns.  Media Watch has three main purposes:

Educating the public about effective autism treatment through proactive contact with the media;

Responding to both accurate and inaccurate information or portrayals of treatments reported by the media (as it relates to scientific findings about their effectiveness); and

Increasing awareness of both scientific evidence and scientific methods that can lead to real hope for those touched by the disorder, in conjunction with other ASAT publications and initiatives (e.g., asatonline.org).

Through Media Watch, we provide written feedback to journalists and other media professionals.  If there are accurate depictions of autism intervention based on the current state of the science, we strive to acknowledge the efforts of those individuals responsible for educating the public with sound accurate information.  Many members of ASAT’s board of directors are behavior analysts, who know that if you want a behavior to increase in frequency it must be reinforced. When an autism intervention is portrayed inaccurately, we also provide feedback in order to educate the media professionals so that they would consider making a correction to the news piece or have more accurate information and appropriate resources available to them in the future.

Many of our Media Watch efforts have pertained to applied behavior analysis. Below is a collection of links to ASAT responses to various news items from the last several months.

ASAT Responds to Stamford Advocate's "Phony Autism Specialist Sentenced to Three Years in Prison" Story

The fleecing of the autism population: Stacy Lore faked her credentials to appear as a certified behavior analyst, and was paid over $155,000 by families and the Norwalk, NY school district. She will serve jail time, but how can parents effectively vet autism providers for their children? ASAT responds:

• Friday, October 29, 2010
  Source: http://www.stamfordadvocate.com/news/article/Phony-autism-specialist-sentenced-to-three-years-734681.php

ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services"

How does Canada stack up when it come to quality of service delivery for children with autism? ASAT commends a particular province which has emerged as an exemplary model in this area.

• Saturday, October 23, 2010 
  Source: http://www.cbc.ca/canada/nbvotes2010/story/2010/09/13/nbvotes-analysis-autism-support-services-1002.html

ASAT Responds to Atlanta Journal-Constitution's “Tech Hopes to Develop Early Warning Tools and Treatments for Autism”

ASAT thanks Atlanta Journal-Constitution writer Ty Tagami for reporting about Georgia Tech’s work on a computerized early warning system for children with autism but also emphasizes the importance of using evidence-based interventions, such as ABA.

• Thursday, September 30, 2010
  Source: http://www.ajc.com/news/atlanta/tech-hopes-to-develop-595947.html

ASAT's Open Letter to Son-Rise Program's Raun Kaufman

In an open letter to Option's CEO Raun Kaufman, ASAT addresses the issue of scientific evidence for ABA (and lack thereof for the Son-Rise Program), as well as how to distinguish a pseudoscience practitioner from a legitimate scientist.

• Monday, September 20, 2010 
  Source: http://www.youtube.com/watch?v=6D2NwgiX72Q

ASAT Eulogy for Dr. O. Ivar Lovaas

Bridget Taylor and David Celiberti pay their respects to one who, by his life’s work, has forever changed the course of science-based treatment for autism and given many families true hope. Please also see page 10 of http://asatonline.org/pdf/fall2010.pdf  where you will find a related interview with Tris Smith and a tribute by Harold Doherty.

• Thursday, August 12, 2010
  Source: http://www.latimes.com/news/custom/scimedemail/la-me-ivar-lovaas-20100806,0,1639646.story

ASAT Responds to Irish Times article "Best Practice Autism Treatment 'Will Vanish' Under Proposals"

In responding to “Best Practice Autism Treatment 'Will Vanish'  Under Proposals" (Carl O’Brien, Irish Times, July 14, 2010), ASAT points out the danger of discarding science-based intervention (e.g., ABA) in favor of so-called “eclecticism” by Ireland’s Department of Education.

• Monday, July 19, 2010 
  Source: http://www.irishtimes.com/.../1224274659597.html

ASAT Responds to Lexington Herald-Leader story "E. Ky. school uses intensive therapy to educate kids with autism"

Although Dori Hjalmarson’s article, "E. Ky. school uses intensive therapy to educate kids with autism" (Lexington Herald-Leader, February 16, 2010) does point out the importance of relying on objective data to help individuals with autism reach their fullest

potential, she refers to the “expense and tedious nature” of ABA treatment, without addressing the complexities of autism, and without noting that initial dollars invested in scientific and affective treatment can save many more dollars throughout the lifespan.

• Tuesday, February 16, 2010
  Source: http://www.kentucky.com/2010/02/16/1141477/reaching-and-teaching.html

ASAT Responds to CNN Story "Study: Early Autism Intervention in Toddlers is Effective"

We commended CNN on their story, “Study: Early Autism Intervention is Effective” for the accurate portrayal of an intervention that is based upon scientific evidence.

• Monday, November 30, 2009 
  Source: http://www.cnn.com/2009/HEALTH/conditions/11/30/autism.study/index.html

ASAT responds to CBS Ch. 2's Health Watch on Rethink Autism

Hats off to Max Gomez, PhD., for not only highlighting ABA as “the gold standard” in autism intervention, but also portraying ABA in a positive light.

• Wednesday, July 29, 2009 
  Source:  http://www.rethinkautism.com/AboutUs/IntheMediaStory.aspx?ID=298

Updates about our Media Watch activities are routinely published in Science in Autism Treatment, ASAT’s free quarterly newsletter.  To subscribe, please visit http://asatonline.org/signup.   To learn more about the newsletter, please see http://asatonline.org/pdf/newsletter_ad.pdf

Early Detection of Autism by Pediatricians
by Lori Bechner, M.A., BCBA

Early intensive behavioral intervention has been well documented as an effective intervention for children with autism (e.g., Fenske, Zalenski, Krantz & McClannahan 1985; Graff, Green & Libby 1998; Lovaas 1987). A necessary prerequisite to early intervention is early detection. Pediatricians, as the professionals working most closely with young children and their families, are in an ideal position to detect warning signs of developmental disabilities and thereby facilitate access to early intervention. But can we rely on pediatricians to do this? Working with children with autism and their families for more than a decade, I have heard countless stories of parents being assured their child was probably just a late talker, had a stubborn personality, or was an introverted kid. Many were told by pediatricians to “wait and see” how the child’s development progressed. After waiting and seeing, diagnosis eventually followed. In the end, valuable time had passed before intervention commenced for these children.

This “wait and see” attitude of pediatricians may be attributed to failure to discriminate between worries voiced by concerned parents of typically developing children and those voiced by atypically developing children. Autism looks much different in a 3-year-old (i.e., when spoken language and interest in peer relationships should clearly be intact) than it does in a 2-year-old (when spoken language is still developing and peer “relationships” aren’t yet developmentally appropriate). So perhaps it’s no wonder, with all the specialized areas covered in medical textbooks, that we cannot possibly expect a pediatrician to be an expert at everything and have intimate, thorough knowledge about every possible childhood ailment. The pediatrician is exposed to a limited sample of the child’s behavior within the context of an office visit (Pidcock 1987; Squires, Nickel & Eisert 1996) and as Siegel (1996) points out, if that sample is limited to “three minutes spent with a half-naked child on the examining table” it is easy to understand why all toddlers—typically developing and atypically developing—may look the same.
Fortunately, there is some evidence that comprehensive knowledge about autism isn’t necessary for accurate early detection. If pediatricians are taught to recognize the pattern of red flags that indicate signs of autism in very young children, that may be enough to warrant a referral for further evaluation.

Baron-Cohen and colleagues (1992) have summarized the critical warning signs in the Checklist for Autism in Toddlers (CHAT). This checklist was devised for use during an 18-month developmental check-up via brief parent interview (items include: “Does your child ever use his/her index finger to point to ask for something?”, “Does your child ever bring objects to you to show you something?”) and health care practitioner observations (items include: “During the appointment, has the child made eye contact with you?”, “Give child a miniature toy cup and teapot and say ‘can you make a cup of tea?’ Does the child pretend to pour out tea, drink it, etc.?”). It is suggested that any child who fails the CHAT be re-screened one month later. If the child fails a second time, s/he should be referred to a specialist for further evaluation.

A 1999 study (Bechner) examined the ability of pediatric residents to detect autism in young children. Participants were shown 4-6 minute video clips, each of which was accompanied by a written summary of parent concerns. Six videos were shown; two of the children portrayed were typically developing
and the other 4 had diagnoses of autism. Following each video, participants completed a brief survey to assess whether signs of developmental delay were detected, and to evaluate any recommendations the resident would give the parent. Following a pretest (in which all pediatric residents failed to detect delay
in the children with autism), an experimental group received a 20-minute training on early warning signs of autism. The control group received a placebo training on bedside manner.

At post-test, the experimental group accurately detected signs of delay in the children diagnosed with autism (and did not indicate delay for the typically developing children), while the control group did not. Additionally, the residents in the experimental group were more likely to make referrals for further evaluation at post-test, versus no recommendations or telling a parent to wait several months for another checkup, than they had been prior to receiving the training. This study suggests 20 minutes of specific training was sufficient to improve early detection skills of pediatric residents. Providing pediatricians (better still, medical students) with specific training and information on detection of early symptoms may facilitate effective treatment for children with autism. Further, making such information available to parents may increase awareness of typical development and thereby expedite investigation of concerns regarding their child’s development. Such information is, in recent years, becoming more readily accessible to the public via local and national initiatives. The National Center on Birth Defects and Developmental Disabilities (a division of the Centers for Disease Control and Prevention) has constructed a comprehensive website which outlines developmental milestones in a clear manner (http://www.cdc.gov/ ncbddd/autism). Milestones are listed for various ages (3 months, 7 months, 1 year, 2 years, 3 years, 4 years, 5 years) and are separated by area (e.g., social /emotional, cognitive, language). For each age range, there is also a list of “Developmental Health Watch” warning signs listed.

It is recommended that the child’s doctor be alerted if any of the listed symptoms are displayed. For example, by the end of 1 year, social / emotional milestones include imitating people in play and acting shy around strangers; cognitive milestones include imitating gestures and beginning to use objects correctly (e.g., brushing hair, holding phone to ear); language milestones include using simple gestures such as shaking head for “no,” using simple words such as “mama” and “dada,” and responding to “no”. The Developmental Health Watch includes absence of single words, failure to use gestures (such as waving or shaking head), failure to point to objects or pictures, or a dramatic loss of skills once present. The website also offers materials which may be downloaded or ordered, including an Autistic Spectrum Disorders Fact Sheet, a Pediatric Developmental Screening Flowchart, and Growth Charts which outline developmental milestones. Sharing information regarding such resources with health care professionals is likely to improve early detection and may directly impact on treatment outcomes for children with autism.
www.cdc.gov/ncbddd/autism/actearly/
References

1. Baron-Cohen, S., Allen, J., & Gillberg, C. (1992). Can autism be detected at 18 months? The needle, the haystack, and the CHAT. British Journal of Psychiatry, 161, 839-843.
2. Bechner, L.E. (1999). Early detection of autistic disorder by future pediatricians. Unpublished masters thesis, University of Massachusetts Dartmouth. In progress for publication. Department of Health and Human Services Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities.
3. Fenske, E.C., Zalenski, S., Krantz, P.J., & McClannahan, L.E. (1985). Age at intervention and treatment outcome for autistic children in a comprehensive intervention program. Analysis and Intervention in Developmental Disabilities, 5, 49-58.
4. Graff, R.B., Green, G., & Libby, M.E. (1998). Effects of two levels of treatment intensity on a young child with severe disabilities. Behavioral Interventions, 13, 21-41.
5. Lovaas, O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9.
6. Pidcock, F.S. (1987). Developmental screening techniques for pediatricians. Pediatric Basics, 47, 5-12.
7. Siegel, B. (1996). The world of the autistic child: Understanding and treating autistic spectrum disorders. New York: Oxford University Press.               Squires, J., Nickel, R.E., & Eisert, D. (1996). Early detection of developmental problems: Strategies for monitoring young children in the practice setting. Developmental and Behavioral Pediatrics, 17 (6), 420-427.

About the Association for Science and Autism Treatment (ASAT)

The PPP SIG recognizes that the vast array of "proposed treatments" for autism can be both overwhelming and confusing for consumers. Sadly, there is not a shared commitment to empirical validation, research, and data based decision making amongst providers. Using science-based treatment methods provides individuals with autism with the best opportunity for success based upon decades of published research.

Fortunately, one organization in particular, the Association for Science and Autism Treatment (ASAT), strives to be an important resource for individuals with autism, family members, professionals, and paraprofessionals, in fact, for anyone interested in reliable, science-based and accurate information about autism and its treatments. Founded in 1998, the mission of the ASAT is to disseminate accurate, scientifically sound information about treatments for autism and to improve access to effective, science-based treatments for all people with autism, regardless of age, severity of condition, income or place of residence. An organization with such a mission is needed at this time given the scores of unsubstantiated treatments and the plethora of other organizations with other agendas.

For more information please visit ASAT's website at www.asatonline.org. On the website, you will find extensive information about the scientific support (or lack thereof) behind the full array of treatments proposed for autism, research reviews, articles and guidelines on how to make informed choices and weigh evidence in selecting treatment options, a Help Desk, information about upcoming conferences of interest, and links to helpful sites and other science based organizations. We encourage you to return to ASAT's website as information about autism treatments is frequently updated. ASAT also distributes a free quarterly newsletter, Science in Autism Treatment, that includes featured articles, book reviews, a Clinical Corner, a Consumer Corner, an ethics column, and interviews with prominent leaders in the field.  Sign up information is available at http://asatonline.org/signup

About the Association for Professional Behavior Analysts (APBA)

The Association of Professional Behavior Analysts (APBA) is a nonprofit organization that is focused on serving professional practitioners of behavior analysis and others who are interested in the practice of behavior analysis.  The PPP SIG is very thankful that the ABPA has endorsed the Consumer Guidelines put forth by the Autism SIG as we feel it is critically important that consumers be given the tools needed to make the best possible choices among providers.

APBA’s mission includes, but is not limited to, providing resources and educational opportunities to Behavior Analyst Certification Board-credentialed professional behavior analysts; working with federal, state, governmental, and third-party entities towards enhancing recognition of behavior analysis; providing resources to professionals in other fields and to consumers interested in learning more about behavior analytic services; supporting improvements in and access to services provided by professional behavior analysts; and promoting public understanding of the professional practice of behavior analysis. The Parent Professional Partnership SIG is very pleased that the APBA is striving to provide support and guidance in areas that have not been fulfilled by other organizations.

The APBA works closely with the BACB and other organizations in behavior analysis and related fields. Collectively, its Directors have many years’ experience practicing ABA, training practitioners, developing and leading behavior analysis organizations, supporting consumers, and working on professional credentialing and public policies. In the short year since APBA was officially launched, the organization has

• worked closely with behavior analysts, advocates, and policymakers in more than a dozen states on  policies to support the practice of behavior analysis, such as laws requiring health insurance to cover ABA intervention for autism spectrum disorders
• published a monthly electronic newsletter tailored to the interests of professional behavior analysts
• issued position statements and written letters to policymakers on several issues of importance to behavior analysts and consumers of ABA services
• developed a user-friendly website
• established partnerships with many behavior analysis associations, advocacy organizations, and service providers
• formed an Autism Spectrum Disorders Task Force
• conducted the first-ever survey of the employment circumstances of professional behavior analysts
• provided members with access to professional liability insurance

Membership in APBA is open to professional behavior analysts and others who are interested in the practice of ABA, including professionals from various disciplines, consumers, and students. For the low annual dues, members receive:

• Access to expert, concrete help with advocating for public policies to support behavior analysis, starting and building behavior analysis associations, and practicing behavior analysis
• A subscription to the monthly APBA Reporter with its timely, practical information on public policies affecting ABA practitioners and consumers, applied research findings, sources of funding for ABA services, and regular “Practitioner’s Notebook” and “Ethics Challenge” columns.
• For most U.S. members, the opportunity to purchase health insurance at competitive rates through APBA’s agreement with the Association Health Program
• Access to the “Members Only” section of the APBA website, which will include a large array of resources.

APBA also offers several levels of sponsorship for advocacy groups and organizations that offer ABA services and products. For membership and sponsorship applications and more information about APBA, please visit www.apbahome.net.

About the Cambridge Center for Behavioral Studies

The Cambridge Center for Behavioral Studies is a nonprofit charitable organization whose mission is to advance the scientific study of behavior and its humane application to the solution of practical problems, including the prevention and relief of human suffering.  The Cambridge Center website, www.behavior.org, contains behavior analysis resources such as guidelines for choosing a behavior analyst and a glossary of behavioral terminology.  Online tutorials on such topics as positive reinforcement and behaviorism may also be found. Included is a list of publications related to behavior analysis, book reviews, abstracts and a newsletter, as well as suggestions for effective parenting, such as behavioral parenting abstracts, articles and internet parenting links. The website contains an overview of Applied Behavior Analysis (ABA) and a list of research and applied settings in which behavior analysts work.

In the autism section, one of the largest sections on the website, scientifically validated information about the causes of autism may be found, and the ABA approach to treating autism. The content of this section is carefully refereed by an Advisory Board comprised of leaders in ABA and autism. The website seeks to bring together knowledge and resources that have been accumulated; to report new findings as they become available; and to present information that has been obtained from objective results and subjected to experimental validation.  The intended audience is people with a personal interest in autism (parents, siblings, other relatives, friends, neighbors and advocates), people with professional interests in autism. (medical practitioners, nurses, occupational therapists, psychologists, speech pathologists and others who contribute to research and the provision of effective services), and students and others thinking about entering the field of research and intervention in autism.

Advocating for Effective Educational Services in a Public School
Jenna Miller, M.A.T., BCBA

1.JM: Advocating for effective, appropriate educational services for a child with autism in a public school setting can be an arduous task. I have asked the mother of an 11- year-old with autism to share her journey in educating herself and her school district about effective educational treatment for her child. I am grateful for her willingness to share the details of the ongoing process of collaborating with the school district to provide a meaningful educational program for her son. Thank you for taking the time to speak with me about advocating for effective educational services for your son. Your son has been educated in the public school since he received a diagnosis at 3 ½ years. At any point did you have concerns about your child’s placement and progress?

Parent: Yes, often. There were always pros and cons to our placement choices. It was a matter of weighing the pros against the cons, and making my best choice. I then tried to supplement the areas that I felt were weak, often by addressing them myself. As my son never plateaued, I never really felt that we had made the wrong placement choice. I felt he was getting the 1:1 he needed, as well as socialization with his community peers. I did consider “what if” my son was in a school that specialized in autism. Would he gain more by following a highly specialized curriculum that encompassed the skills he needed to be taught? Was that more important for his future, than the benefits he was reaping from his in-district placement? Finally, my child’s learning needs have changed continuously throughout the years. A placement decision made in one grade might not be the same one made several years later, as he and his peers mature differently in social skills and learning skills. I considered the placement each year anew.

2. It sounds like you had a lot to consider in deciding on the most appropriate educational
placement. How did the school staff/team respond to your concerns?

I didn’t necessarily address concerns about placement directly to them, because each year I didn’t choose
to change the placement. Instead, I addressed the components of his education that I felt needed more
emphasis. In the earlier years, the education goals (academic, social and communication) seemed appropriate, and were well addressed by his placement (partial inclusion), and his progress. Academically he was on par with his peers, and in these younger grades, there was ample opportunity for social and communication efforts throughout the school day. In early-middle school, the disparity between my son and his peers grew, as the peers developed stronger critical thinking ability. The working structure of the
class became more intense, and lent itself less and less to the social and communication efforts my son required. It became apparent that my son needed to be taught academic, social and communication skills in a more structured teaching program than his typically-developing peers. The school did try to address his special learning needs. However, it became difficult to address more specialized education goals in addition to the standard curriculum. By the end of middle school, we worked as a team, viewing his education from a different perspective. His schooling was no longer about how to continue “educating” him in the mainstream with typically developing peers following the regular education curriculum. It became about defining a curriculum based more upon his specific social, communication and academic needs and abilities.

3.What was the greatest obstacle you faced in helping the school team meet your son’s needs?
I think perhaps it was, and continues to be, to fully grasp the great breadth of skills that need to be taught specifically to my son - understanding that he needs programs designed so that he can be taught skills that come naturally to his peers. An equally important concern is for all staff to appreciate my son’s full current
capabilities, and his lifelong potential. These two issues go hand in hand. They won’t teach skills they don’t expect of him. First, we have to be aware of all his needs. Then, we have to teach him each skill necessary to function at his full ability. If we teach him well, he really can master skills systematically and achieve his potential. We hold his potential, his future, in our hands.

4. In addition to choosing what skills to teach, were there other obstacles?
Yes, one obstacle is pursuing his (public school) education not with the ultimate goal of fitting him in to the standard classroom academics and classroom environments, but instead to make his education about what he needs to learn to be as independent and as successful an adult as he can be. This requires tailoring his education to his skills and his difficulties, and teaching him in the manner that he requires. The goals for his education are entirely different than those for his regular education peers. Another obstacle is the ability to approach the staff with my concerns without them assuming that I am questioning their expertise, their commitment or their efforts. [A final obstacle is] my ability to put my emotions aside when meeting with the team, so that I can address issues at meetings most effectively and be accepted as a solid and equal participant and decision maker.

5. What steps have you taken to work with your school to provide more effective programming for your child?
When my son reached the grades in school where teaching in regular education class required more critical thinking and in-depth academics, I met with the school staff to adapt his program into one specifically needs and his abilities. I addressed my concerns about the need to teach him certain skills more proactively and more intensely. Throughout this process (which is ongoing), we continue to meet on a regular basis to adapt the programming to be most effective for my son.

6. As you know, working with other professionals for yourchild’s benefit can sometimes be difficult. Can you please give more information as to how you collaborated with your school’s team?

It’s been a complicated journey. They listened and brought in an autism consultant to help address the issues. Agreeing to educate my son in a different way was only the first decision for the team. Actually planning the ‘how to’ was much more difficult. Initially, it seemed contrary for the team to choose to exclude from his education plan those academic components of the school’s curriculum that my son was managing behaviorally and cognitively but that were not the most relevant for him. Then, we had to begin the process of deciding what specialized components had to be added to his education plan, and how to most effectively teach them to him.

The change in the philosophy of my son’s education, and the depth of change in the programming and its implementation really required a great deal of time to develop. While
I was anxious to move quickly, realistically much of the focus in the new programming involved time to be
planned. It also evolved in stages, was employed almost in pyramid fashion one step at a time. And my son and the staff required time to acclimate to much of the new system. This is still an on-going process.

7. What has been the most helpful component of your collaboration effort?

We meet regularly as a team to discuss my child’s growth, his needs and capabilities, and the programming
so that we continue to keep his teaching consistent between staff and parents, and also current with his everchanging skills. This has been extremely valuable in keeping things moving forward in a timely manner. I am quite willing to work at home and in the community to generalize skills being addressed at school. I continue to seek support from outside resources so that I am as best prepared as I can be to discuss my child’s education.

8. It sounds to me that you’ve made a tremendous effort to advocate for effective services for your son. How do you feel about the results of your efforts?

I appreciate that we have a cooperative team effort in planning my son’s education. I feel this is so because I can speak to my son’s learning abilities with knowledge, experience and confidence. I find advocating very draining on me as a parent whose ultimate goal is the lifelong success of her child. Overall, I appreciate the progress we’ve made, yet I wish it was an easier and quicker process. There is always more that can be done, and I will always strive to do more for my son in his schooling, and in the home and community.

9. Based on what you shared with me so far, it seems that you have been able to work with the school to make some changes. What is the one thing you would like to see your school district improve on?

I would like them to understand the very specific skills my child needs to be taught to become more independent, to become a more self-sufficient and successful student, and more socially-aware and socially-engaged. I would also like them to understand my child’s future potential in life, and realize that they (and I) must make it happen for him. That he can be a successful adult, one who has a rewarding and productive life, independent to the best of his ability and achieving to the best of his ability.

10. I can only imagine how overwhelming it must be to advocate for your child. Is there any advice you can give to other parents about advocating for effective services for their children with autism?

Educate yourself. Seek input from people in the field – from [New Jersey’s] COSAC, from [New Jersey’s] BCBAs, from parent support groups, network with other parents, attend seminars, read newsletters, books and literature. Much has been learned recently about autism, and gains will continue to be made in various fields in understanding how to help people with autism. Keep aware so that you and your team can continue to learn about best practice and adapt them into your child’s program.

11. Thank you so much for sharing your time and
experiences with me and the members of the Autism SIG.

The Hidden Curriculum: Practical Solutions for Understanding Unstated Rules in Social  Situations

By: Brenda Smith Myles, Melissa L. Trautman, and Ronda L. Schelvan

Reviewed by Ruth Donlin, M.S.

While social skills in general are challenging for individuals with an Autism Spectrum Disorder (ASD), this book serves as a user friendly guide to understanding the often “taken-for-granted,” unspoken social rules that most neurotypical people figure out naturally or through observational learning.

On a daily basis there are a plethora of situations that we instinctively understand that individuals with an ASD cannot automatically recognize. Without specific curriculum to help individuals with an ASD understand these social situations, they may repeatedly make social errors because they do not realize what they are “doing wrong.” These authors have provided this excellent resource to orient us to these potential deficits in our children and the students we work with to help them gain specific information about how to approach these common social situations.

The first section of the book focuses on identifying and explaining hidden curriculum issues by an understanding of statements such as, ‘I shouldn’t have to tell you, but…,’ ‘It should be obvious that…,’ ‘Everyone knows that…,’ ‘Common sense tells us that…,’ ‘No one ever…” (Myles, 2004 p.5.). Examples of hidden curriculum would include, nose picking, adapting to figuring out that different teachers have different rules, not always saying exactly what is on one’s mind.

There are a number of valuable resources within the book, such as considering how hidden curriculum changes across age, gender, cultures, as well as considering who the individual is with, such as peers or teachers. The authors have developed a chart of body parts, actions, and interpretations regarding hidden curriculum as a guide to explain to the reader and to the individual developing their social skills what to consider in their training and/or socialization. Using this chart can help parents and educators develop tailored interventions to achieve this knowledge.

The following sections of the book address the numerous considerations regarding the hidden curriculum in the home, community, and workplace. Most importantly, the authors write about legal considerations. Because many individuals with an ASD are unaware of the legal implications of their behaviors or how to handle if they are being approached or questioned by authorities, this section addresses an often overlooked development as individuals with an ASD move into their young adulthood and beyond.

There are several strategic approaches to helping individuals identify and evaluate their social skills. The first described is the Situation-Options-Consequences-Choices-Strategies-Simulation (SOCCSS) approach to developing problem-solving skills. A template chart is included that can be photocopied from the book to be used as a written, concrete example of how to implement the SOCCSS method. Another method to social problem-solving is "Seek-Observe-Listen-Vocalize-Educate" (SOLVE). A written chart is provided that can be shown to the individual to help them remember the steps.

There various ways to create individualized social narratives, and specific examples of each social narrative are provided. One of the most frequently used social narratives are social stories, which serve to describe social situations in a manner that helps the individual cope with social situations, make better or prosocial choices, as well as build in problem-solving strategies that could be helpful in that situation. Social stories can be used in a variety of ways across a wide range of topics and situations.

Visual strategies are critical in taking a solely verbal conversation about social situations into a more concrete and consistent form of intervention or providing the visual reminder when needed. Cartooning and comic strip conversations are a great way to make a social situation more graphic and oftentimes this approach is appealing to individuals on the spectrum. Concrete guidelines and examples are provided as well. Utilizing power cards and implementing social autopsies are other helpful techniques that can make a significant difference in teaching individuals other ways to approach and learn about the social situations they experience.

Additional methods to assist in social skill development are provided, placing an emphasis on the visual representation for teaching emotional awareness, calming, and problem-solving. The incredible 5-point Scale created by Buron and Curtis (2003) is a visual aide used to help individuals identify their emotions and how to regulate modulate their responses. This scale can be paired with social stories or social narratives. For more advanced methods, Myles describes video modeling as a teaching strategy and a variety of ways to use this tool to help students visually watch others engage in social situations and how to handle them.

Most strategies utilized are best when the materials are tailored to the needs of the individual, however; for a quick reference and general support to be provided, the authors have included excellent general curriculum items to serve as a teaching tool. These specific curriculum items include:

Airplane Trips               Bathroom Rules
Birthday Parties            Clothing
Eating                         Friendship
Life Skills                      School
Social Situations           At the Swimming Pool
Rules to Live By           Figurative Speech and Idioms
Slang Terms

Looking beyond the scope of broad-spectrum social skills, delving into those hidden aspects of how we
socialize and what is considered to be socially acceptable can be subtle and indistinguishable to the individual with
an ASD. The Hidden Curriculum is one of the books that parents and educators will reference frequently.

Schrandt, J. A., Buffington Townsend, D. & Poulson, C. L. (2009). Teaching empathyskills to children with autism. Journal of Applied Behavior Analysis, 42, 17-32.

By: Shara J. Marrero, B.A.
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Schrandt, Buffington Townsend and Poulson (2009) ran a multiple baseline across participants design to assess the efficacy of a treatment in which empathic responding was taught to four children with autism ages four to eight. Given the existing research showing deficits in empathy and perspective-taking skills in individuals with autism, the authors sought to expand on previous research by teaching empathy skills. The authors chose to teach empathic responding because of the behavior’s positive social implications, particularly in terms of relationships with peers and family members. The researchers examined procedures used previously to teach other social skills to individuals with autism, such as the presentation of affective discriminative stimulus compounds, prompt delay, modeling through auditory scripts, manual prompts, behavioral rehearsals, and reinforcement in a pretend-play setting. Instructors presented vignettes using dolls and puppets demonstrating sadness or pain, happiness or excitement, and frustration. Discriminative stimuli included both a motor and a vocal component. Generalization was promoted with non-training stimuli and real people and social validity data were collected.
In addition to the multiple baseline across participants procedure, one student also received a second multiple baseline design across behaviors to evaluate the treatment’s efficacy in teaching empathic responses across three categories of empathy (sadness or pain, happiness or excitement, and frustration). For all students, training and probe discriminative stimuli and training responses were organized into the three categories of empathy. Examples of targeted responses for sadness or pain included, “Ouch!”, bumping leg on table with “Are you okay?”, and patting arm. For happiness or excitement, responses included, “This is fun!”, pushing a toy car with “Can I see?”, and moving hand toward own body. Targeted responses for frustration included, “Oh man!”, dropping bin of blocks with “I’ll help you,” and reaching one hand with palm turned up.
Results indicated that pretend-play responses of empathy to displayed affect increased systematically as treatment was introduced across participants. Appropriate responses also generalized systematically to non-training stimuli across participants. For the student who received the second multiple baseline treatment, empathic responses in the three response categories increased systematically with the implementation of treatment. Thus, this treatment was concluded to be clinically effective for this group of students with autism.
The authors acknowledged the limitations of this study, including the fact that generalization from pretend play to “real life” (e.g., a community or home setting outside of school) may be limited. First, though typical peers would have been preferred for teachers in the training phase, these peers were unavailable. Second, the effects of individual treatment package components on responding cannot be fully understood because a component analysis was not conducted. Third, the authors recognized that the treatment package was cumbersome and that the raters in the social validity assessment were teachers who were familiar with individuals with autism.
In sum, the authors demonstrated that young children with autism can learn to emit socially appropriate and relevant empathic responses in pretend-play and generalized settings and stimuli. Children with autism who demonstrate appropriate displays of empathy may be more likely to increase future interactions with peers and family members. Importantly, the results of this study demonstrate that the principles and techniques of Applied Behavior Analysis can be effective in increasing and improving complex social skill responses, such as empathy, for children with autism.

A Horse of a Different Color: A Review of the Effectiveness of Hippotherapy

Science, Fads, and Applied Behavior Analysis: A Syndicated Column by:

Thomas Zane, Ph.D., BCBA-D

Institute for Behavioral Studies at The Van Loan School of Graduate and Professional Studies, Endicott College, Beverly, Massachusetts

Interventions for Individuals on the Autism Spectrum and

How Best to Evaluate Their Effectiveness

Autism is a complex disorder characterized by significant deficits in social reciprocity and communicative ability as well as the presence of repetitive behavior/restricted interests. Given the heterogeneous nature of autism, many interventions have emerged with disputed claims of effectiveness. Applied Behavior Analysis (ABA), sensory integration, specialized diets (e.g., gluten-casein free diets), pharmacological interventions (e.g., Risperdal), and mercury detoxification procedures are among some of the commonly-used interventions with learners on the autism spectrum. However, many of these treatments persist in the absence of scientific data supporting their use. This absence of data is particularly problematic for parents and practitioners who are trying to provide the best possible intervention for their learners with autism. The prospect of selecting an appropriate treatment for autism can be overwhelming for anyone with the vast amount of conflicting information available. In fact, it is estimated that three quarters of parents will enlist an alternative treatment method as part of their child’s intervention (Hanson et al., 2007).

There is consensus within the scientific and medical community that the best first line of treatment is an intensive, coordinated program of special education and behavior management. Developmentally appropriate intervention programs generally include a language-based curriculum, systematic intervention to improve communication and social skills and a structured plan to address maladaptive behavior. Behavioral intervention strategies, such as ABA, have the most empirical support for their use. A considerable amount of recent research has validated the use of these approaches to treatment (e.g., Dawson et al., 2010). In addition, ABA has been endorsed by the U.S. Surgeon General (1999), National Institutes of Health (NIH) and the National Standards Report published by the National Autism Center (2009).

Non-behavioral treatments can generally be divided into two main categories: biological and non-biological interventions. Biological interventions include treatments such as Hyperbaric Oxygen Therapy (HbOT), vitamin therapy, secretin therapy, chelation, specialized diets (e.g., gluten-casein free diets, Feingold diet) and psychotropic medication. With the exception of psychotropic medication research, sound empirical evidence supporting the effectiveness of these interventions for learners with autism is sparse and/or unsupportive. Several studies have shown that certain psychotropic medications (e.g., Risperdal) can decrease aberrant behavior commonly associated with autism (e.g., impulsivity, aggression). While psychotropic medications can be effective for decreasing maladaptive behavior, parents and practitioners must be vigilant while monitoring for side effects. A significant concern is that individuals with autism are often less unable to communicate potential adverse side effects to caregivers. In addition, it is important to monitor (and distinguish between) positive clinical effects and sedative effects. Other biological interventions require more thorough scientific investigation to determine if and with whom they are effective before widespread adoption by the field (Pediatrics, 2011) .

Non-biological interventions include treatments such as Sensory Integration Therapy (SIT), Facilitated Communication and Craniosacral Therapy. While these interventions may often appear to be scientifically-based, there is little to no sound research to support their use. In addition, some of these interventions are marketed to look like behavioral treatments, but lack substantial evidence. Some of these interventions even have evidence to contraindicate their use (e.g.,facilitated communication & SIT).

While behavioral intervention is a good, empirically-supported starting point, it does not necessarily preclude the use of “alternative” interventions. Rejecting other types of intervention without understanding and evaluating them is problematic for several reasons. First, the absence of supporting evidence is not the same as evidence against an intervention. One of the main problems with the new and emerging treatments for autism is that limited research has been done to either validate or invalidate these interventions. The primary burden of validation/invalidation of these treatments should fall upon the shoulders of practitioners in the field using these interventions and to some extent, the scientific communities in general. Complicating this further is the fact that scientific journals do not typically publish negative research findings. In other words, research indicating that particular treatments are not effective may not be accepted for publication because of a journal’s bias to only print positive findings/results. Another complicating factor is the individual variability of response to different treatments for autism. As mentioned previously, autism is a complex disorder with a variety of different etiologies that may affect response to treatment. It is often the case that strategies that work well for one individual do not translate well to other individuals. Practitioners should approach the intervention process with an objective mind. Rather than dismissing alternative approaches to intervention, practitioners should take to opportunity to study these interventions and systematically eliminate components/interventions that are not effective.

In addition to educating themselves about alternative interventions, practitioners and parents should critically evaluate the effectiveness of the intervention process. It is often the case that people do not use systematic designs to assess the effectiveness of alternative treatments. Implementing treatments in a reversal (ABAB) design or multi-element designs can provide valuable information regarding the efficacy of treatments.

In addition, a variety of behavioral measurement procedures, such as observational data coding, preference and reinforcer assessments, and functional analyses, can be viable ways to evaluate the effects of these interventions. Using behavioral measures for the purpose of evaluation can allow for testing some of these alternative interventions to determine if there is a clinically significant benefit. Such procedures could allow parents and practitioners to determine the effectiveness of interventions and discontinue components or interventions that are ineffective.

Alternative therapies are going to be part of the autism treatment landscape for the years to come. It is the responsibility of both parents and practitioners to become informed consumers of autism services. It is important to critically review the validity of proposed treatments, read the literature (peer-reviewed articles rather than testimonials or anecdotal reports) and look for scientific evidence of benefit, potential health risk, and financial or time cost of all treatments. While the temptation to “leave no stone unturned” may seem appealing, wasting precious time with ineffective interventions may prevent learners from maximizing their potential.

In summary, there exists a wide variety of behavioral and non-behavioral interventions for learners on the autism spectrum. Some of these interventions have garnered empirical support (i.e., ABA, some psychotropic medications) while many have not be studied thoroughly enough to validate the effectiveness for their use. Unfortunately, many treatments that are ineffective persist because they often promise miraculous results and/or are easy to use. The best solution is for parents and practitioners to educate themselves regarding these alternative therapies and critically evaluate the effectiveness of these interventions. In doing this, parents and practitioners can ensure the best possible intervention for their learners, prevent time, money and resources from being wasted and can ultimately help others through the process by sharing their findings with others.

8. The Behavior Analytic Community Unites to Support A Massachusetts Licensing Bill

Steve Woolf, Ph.D., BCBA-D

President of the Massachusetts Association of Applied Behavior Analysis

Robert F. Littleton, Ed.D.

Executive Director of the Evergreen Center & President of Beacon ABA Services

Since 1998, the Behavior Analyst Certification Board (BACB) has been the single governing body for professionals working in the field of applied behavior analysis. Under certification, the field has thrived resulting in increased numbers of BACB certificants and the creation of new graduate training programs with coursework concentrations in applied behavior analysis (ABA). Board Certified Behavior Analysts (BCBA) are employed worldwide and work in numerous fields (e.g., autism treatment, developmental disabilities, foster care, schools, corporations). Within the last two years, individual states have created licenses or began the process of licensing behavior analysts. Massachusetts is the latest state to take up the issue of behavior analyst’s licensure. On September 20th a hearing on Beacon Hill will consider public comment on House Bill 1901: An Act relative to the licensure of behavior analysts. The hearings will be conducted by the Joint Committee on Consumer Protection and Professional Licensure and are the culmination of an arduous, 4-year debate within the Commonwealth’s behavioral community.

Although Massachusetts is not the first state to consider the licensing of behavior analysts, the outcomes from this debate may represent the biggest challenge, risk, and potential reward to the field of applied behavior analysis in recent years. This is largely due to Massachusetts' unique status as possessing the densest concentration (on a per capita basis) of BACB certificants in the world. There is one BACB certificant for every 8,431 residents of the Commonwealth, 12 BACB University approved graduate coursework programs, and a total of 782 BCBA/BCABAs. Although California and Florida each contain more BACB certificants, the populations of these states are vastly larger than Massachusetts.

The passage of any legislation can be a contentious process, and this bill is not immune to controversy. The Massachusetts Psychological Association (MPA) is supporting an opposing bill, House Bill 1002, which would significantly restrict the scope of practice of BACB certificants. House Bill 1002 would also cede supervision of BCBAs and treatment decision authority regarding behavior analytic treatment to licensed psychologists. The fact that fewer than 20 Massachusetts licensed psychologists have a BACB credential suggests there would be a lack of qualified professionals available to supervise ABA based treatment if HB 1002 was enacted into law. This would substantially restrict the ABA services available to children, adults, and families affected by ASD in the Commonwealth. HB 1002 would also have the deleterious effect of driving up the overall cost of services per client by adding the expense of supervision from a licensed psychologist. The increased per case cost and limited number of licensed psychologists required to supervise BCBAs would most certainly slow the implementation of Massachusetts' recently enacted ARICA bill (An Act Relative to Insurance Coverage for Autism), which mandated health insurance for children, adults, and families affected by ASD, and sought to improve access to effective treatment.

One of the major advantages to HB 1901 is the experience of the bill's author, Representative John Scibak.  Representative Scibak has a Ph.D. in psychology with a specialty in applied behavior analysis. He has been an invited speaker at Association for Behavior Analysis International (ABAI) conferences and has a deep and clear understanding of ABA's scope of practice, contributions to society, and key elements that differentiate behavior analysts from licensed psychologists.  In constructing HB 1901, Representative Scibak consulted widely and built consensus within the behavior analytic community.  As a result, this bill has garnered the support of the Massachusetts Association for Behavior Analysis (MassABA), the Berkshire Association for Behavior Analysis and Therapy (BABAT), the Association for Behavior Analysis International (ABAI), the Association for Professional Behavior Analysts (APBA) and the Behavior Analyst Certification Board (BACB). After much debate, problem solving, and compromise, Representative Scibak was able to design HB 1901 with the consensus and support of state and national behavioral associations.

Like most pieces of legislation, the language and detailing of these bills is legalistic and can be challenging for individuals not regularly accustomed to reading laws and regulations. For these reasons, we have broken-down HB 1904 into five key elements and analyzed the implications for behavior analysts across the Commonwealth.

Element 1: The licensing board

HB 1901 calls for a licensing board comprised of nine members appointed to three-year terms by the Governor.  Of the nine members, seven must be BACB certificants (2 BCBA-Ds, 4 BCBAs, and 1 BCABA) and two members from the general public. Board composition is one of the most critical elements of concern for behavior analysts. If the board were to be staffed with licensed psychologists, the possibility of modifying the behavior analyst’s licensure qualification standards or adding regulations such as required BCBA supervision from a licensed psychologist would increase. It is worth noting that the great majority of licensed MA psychologists would not meet the minimum course requirements or supervision standards for approval to sit for the BACB examination. Given the relative paucity of qualified psychologists who can conduct or supervise behavioral services, it is possible that a psychologist-dominated licensing board would inadvertently limit access to services to families and clients.

Element 2: Board powers

The most fundamental responsibility of a board is to examine licensure applications and render acceptance/rejection for state licensure. The behavior analysis licensing board will have the power to issue two types of licenses: Licensed Behavior Analyst (LBA) and Licensed Assistant Behavior Analyst (LABA). The board would also adopt rules and regulations governing the licensure of behavior analysts and the practice of applied behavior analysis in the state. Within the authority of the board, a LBA or LABA may be fined, censured, revoked, suspended or denied a license, or otherwise disciplined for substantiated violations of the BACB “code of ethics” or of rules subsequently adopted by the licensing board.

The authority given to the licensing board satisfies the primary rationale for behavior analysts’ licensure, which is consumer protection. The responsibility for protecting consumers served by BCBAs has in the past fallen under the auspices of the BACB’s disciplinary review committee. The BACB review committee has been very effective in monitoring complaints and identifying individuals fraudulently claiming certification.  However, this committee reviews only those behavioral professionals who hold a BACB certificate. An individual that practices applied behavior analysis without a certification and does not claim to be a BACB certificant would not be subject to the authority of the BACB review committee. It is also important to note that the BACB has limited investigation and enforcement capacity, where the harshest action administered by the review committee is limited to the revocation of an active BACB certificate.  With the establishment of a behavior analyst's license, the Commonwealth would have the authority to conduct localized investigations into claims of professional misconduct or misrepresentation using the resources of a local state investigatory department. A state licensing board investigation would also provide the BACB review committee additional evidence for potential professional misconduct. The BACB review committee would also gain increased enforcement authority by referring certificants that also hold a state license to local state licensing boards for potential violations of professional practice.

Element 3:    Defining qualifications

Under HB 1901, LBAs must complete the BCBA approved coursework and supervision requirements established by the BACB. The LBA must obtain a passing outcome on the BCBA examination and maintain the professional continuing education standards established by the BACB. The standards of the BCaBA established by the BACB would also apply to the LABA license. For the first five years of this legislation, any applicant who is a BCBA/BCaBA shall be eligible for status as a LBA/LABA. This segment of the legislation is often referred to as the grandfathering rule, and has the intention and effect of qualifying all active BACB certificants for the appropriate license at the time of enactment and throughout the grandfather period.

Element 4: Consumer protections

As briefly referred to in Element 2, the primary purpose of this legislation is to protect the consumers of applied behavior analysis. Behavior Analysts work with some of the most vulnerable and disabled populations in the Commonwealth. In Massachusetts ABA services are often conducted in schools or home by non-certified paraprofessional staff under the supervision of a BCBA. Licensure will offer families a regulated process to investigate accusations of misconduct and prosecute those who violate their scope of practice or the BACB guidelines for responsible conduct. These increased regulatory standards should also serve to protect the field, as all practitioners of ABA would be subject to regulatory standards consistent with other established licensed professional disciplines (such as speech language therapists, physical therapists, and psychologists).

Element 5: Scope of Practice and Prohibition of Practice

HB 1901also contains a clear description of the LBA's scope of professional practice.  This scope of practice defines the procedures, actions, and processes that are permitted for the licensed individuals. Representative Scibak's bill defines a scope of practice that is consistent with and similar to the definition of the Practice of Behavior Analysis promulgated by the BACB. The HB 1901 scope of practice is a contemporary and evidenced based description that covers the scope of professional duties of a practicing behavior analyst.

HB1901 also specifies some clarifications and restrictions of practice as a behavior analyst. For example, LBA’s would be prohibited from psychological testing, neuropsychological assessment, diagnosis of psychiatric conditions, psychotherapy, cognitive therapy, sex therapy, psychoanalysis and hypnotherapy. This bill would not prohibit those BCBAs who are also licensed psychologists from engaging in those activities while representing themselves as psychologists. Implementation of HB 1904 would not restrict or prohibit psychologists or other helping professionals from treating others utilizing the principles or procedures of ABA. The legislation would only prohibit individuals from promoting themselves as an LBA without a supporting license. Psychologists would be permitted to treat clients utilizing ABA or behavior procedures if they were properly trained as defined through their professional scope of practice.

Implication for the field of ABA in Massachusetts

The licensing of behavior analysis would have a number of benefits to behavior analysts and the citizens of the Commonwealth:

1) Result in increased protections for the consumers of behavior analysis services.

2) Potentially increases the number of insurance companies who reimburse LBA services through 3rd party billing. This would increase access to ABA services for numerous families.

3) Ensures that the scope of the applied practice of behavior analysis is not restricted to developmental disabilities and autism treatment. Research in a variety of applications of the technology of ABA demonstrates its usefulness working with individuals beyond DD and autism (e.g., those with learning challenges, attention/concentration issues, basic parenting concerns, challenging behavior in non-disabled populations). Success with these populations will ultimately grow the field and create numerous opportunities for LBAs.

4) A professional license is prestigious!  Adding the LBA/LABA can increase the professional stature of the field and help to create long-term viability for the profession.

House Bill 1904 currently has the support of the state’s two main organizations representing behavior analysts, the Massachusetts Association for Behavior Analysis (MassABA) and the Berkshire Association for Behavior Analysis and Therapy (BABAT).  The events that transpire following the September 20th public hearing may set the stage for the continued growth and expansion of the field and most importantly ensures that the citizens of the Commonwealth of Massachusetts finally receive the consumer protections they require to guarantee access to effective treatment.

9. Autism SIG responds to the DSM-V Changes by Judith Miller, PhD

Since autism was first described in the 1940’s, our understanding of it has broadened, and we now understand it as a spectrum disorder.  Revisions in the diagnostic criteria should reflect this unitary construct.  The research is absolutely clear that the DSM-IV definitions of Autistic Disorder, Asperger Disorder, and PDDNOS did not identify real differences in the biology between individuals on the autism spectrum.  Rather, they were three names for one condition.

Three names for autism have been confusing to parents, schools, and providers.  But out of the confusion came a key benefit—we all became educated about the full spectrum of autism.  Society is now replete with examples of individuals with ASD as heroes, successful adults, role models, activists, loved and loving family members, friends, and colleagues.  With this also came a more acute awareness of the tremendous and often desperate struggles faced by families and communities as they do all they can to support individuals with ASD who need help.

Parents, advocates, and professionals have worked hard to move research and services forward.  Since DSM-IV criteria were published, educational and service organizations have broadened their reach to include higher-functioning individuals.   Even though DSM-IV criteria were fraught with problems, we all learned to work with it.  Changes to the status quo are frightening, and families will be concerned about whether the updated diagnostic criteria will impact them.   However, individuals with ASD and their families should not anticipate losing their diagnosis or services.

A close review of the proposed criteria shows that the core of the diagnosis will not change.  In many ways, the new criteria eliminate artificial boundaries that hampered clinical work, research, and advocacy.  For example, the new criteria integrate the social and communication impairments, a clear improvement over earlier diagnostic criteria.  The new criteria acknowledge that children with ASD may relate well to parents but struggle with peers.  They also better capture the nature of the sensory issues so widely seen in ASDs.  And the new criteria do not specify an exact age of onset cutoff, which may help us better identify older adolescents and adults with ASD who might not have access to their early developmental histories.  Furthermore, the new criteria reflect a wide range of possible severity within each characteristic, and provide some examples of how the impairment may manifest at different developmental levels.  Finally, those who do not meet criteria for ASD may meet for the new Social Communication Disorder, and it would be helpful to learn more about this group of individuals.

Of course, how these criteria are put into practice will be important to refine with clinical research and guidelines.  One area that is not yet clear is how well the new criteria will identify very early autism, which is important to understand since there has been such a wide ranging effort to support early autism screening.  For older children and adults, however, a few reports recently have suggested significant problems are coming our way.  While initial studies gain a lot of attention, they often have significant methodological limitations.  Careful follow-up research, with improved methods, will better determine the impact on clinical practice, research, and policy.   For example, studies underway on a larger scale are finding extremely small differences between who is identified under DSM-IV compared to DSM-5 (on the order of 1-2%).

From a research perspective, continually refining the criteria is welcomed.  When diagnostic criteria are too broad or create false divisions in a spectrum disorder, discovery of biological mechanisms (e.g., genetics, brain imaging and response to medications) is not possible.  Ultimately our goal is to discover causal mechanisms so that we can develop even more effective treatments for those who need them.