The American Medical Association Withdraws Support for ABA and Opens the Door for More Advocacy for DIR

At the American Medical Association House of Delegates annual meeting last month, they adopted a resolution (Resolution 706) originally entitled, “Revision of H-185.921, Removal of AMA Support for Applied Behavior Analysis” (American Medical Association [AMA], 2023, pp. 1179-1182).  The old policy which is focused on health insurance coverage simply stated that, “AMA supports coverage and reimbursement for evidence-based treatment of Autism Spectrum Disorder including, but not limited to, Applied Behavior Analysis Therapy”.  Even though it was a simple policy, it gave specific support for ABA and it gave ABA lobbyists support in their efforts legislatively and otherwise to garish support for ABA that was often obtained in a way that excluded other approaches like DIR®.

Thanks to this new resolution having been adopted as amended last month, the new policy will remove the explicit support for ABA and opens the door for supporting all evidence-based services, including DIR®.  They also moved away from the word “treatment” and will use “services” instead which I think is a wonderful acknowledgment that an autistic person may need support services, but the concept of treating and fixing the autistic person as if they were broken is wrong and needed to be changed.  Furthermore, the amendments made in the meeting expanded the language to widen the lens from just Autism Spectrum Disorder to include “neurodivergent individuals”.  These are all much needed updates.

The reality is this policy will most likely sit quietly among countless AMA policies, but it is an important one for all of us that have been working to raise awareness about the limitations and problems with ABA and for those of us that have been advocating for DIR®.

While a handful of you that read this blog may see the policy at some point, very few will probably ever see the language within Resolution 706 that gave the supporting rationale for the new policy change.  The rational provided is impressively well crafted and includes many of the exact things we have been including in our advocacy work here at ICDL.  It also includes acknowledgement of the research supporting DIR® as an evidence-based approach (which we obviously know, but it is good to see it being referred to correctly more often now).  So, I am going to include all the “Whereas” resolution rationale here for you.  Take a read, it is quite good.  You can view the entire resolution in the referenced document as well if you want.  It includes all of their citations to support these “Whereas” statements. 

From the AMA House of Delegate Handbook:

Whereas, A 2018 study from the Centers for Disease Control and Prevention (CDC) estimated the prevalence of autism spectrum disorder (ASD) among [children] aged 8 years to be 1 in 44; and

Whereas, Applied Behavioral Analysis (ABA) is currently the most widely available and commonly used state-funded form of autism therapy in Canada and the United States; and

Whereas, Autism treatment represents a fragmented industry that consists of a mixture of for profit and nonprofit organizations, with the top nine for-profit chains estimated to have a combined revenue of $547 million and a market value close to $2 billion with future growth expected; and

Whereas, An ABA software company reports over 3 billion in claims processed annually for about 1,300 practices highlighting the prevalence of ABA use as an intervention for individuals with autism; and

Whereas, Autism Speaks lists 3,194 centers across the United States who offer ABA therapy as of 2022; and

Whereas, ABA was conceived in 1961 by Dr. Ole Ivar Lovaas to condition neurotypical behaviors in children he viewed as “incomplete humans”; and

Whereas, Desired behavior is often defined by the adult or behaviorist without input or requirement of consent from the child and may include non-harmful stimming or coping behaviors; and

Whereas, ABA uses behavior modification techniques to eliminate behaviors deemed undesirable; and

Whereas, ABA practices are historically based in abuse such as holding autistic children's communication hostage through the use of their devices as leverage, and denying basic rights such as food and toileting privileges; and

Whereas, Modern ABA still abides by the founding principle of making a child appear “normal” or “indistinguishable from one’s peers”, which serves to separate the humanity of the individual with autism from desired behaviors; and

Whereas, A 2018 study found that Adults with autism who have received ABA are more prone to suicide; and

Whereas, ABA has been repeatedly linked to Post Traumatic Stress Disorder (PTSD), with 46% of 460 ABA participants meeting the diagnostic threshold for PTSD in an online survey; and

Whereas, Adults with autism have been continuously outspoken about the trauma incurred by ABA practices experienced in their childhood; and

Whereas, A 2012 literature review found the evidence base for services for adults with an ASD to be underdeveloped; and

Whereas, A 2018 Cochrane review recommend further research after reporting very weak evidence in support of ABA; and

Whereas, A 2022 informal online community survey found that 71% of adults with autism responded “disagree” or “strongly disagree” to the statement “Generally speaking, I support ABA therapy for autistic children”; and

Whereas, A 2020 Department of Defense report demonstrated a lack of correlation between improvement in symptoms and hours of direct ABA services, found that the improvements recorded were due to reasons other than ABA services, and ABA services did not meet the TRICARE hierarchy of evidence standard for medical and proven care; and

Whereas, A 2021 study on conflicts of interest (COIs) in autism early intervention research found COIs to be prevalent and under-reported, with 70% of studies containing a conflict of interest and less than 6% declaring them as such; and

Whereas, Current research supports alternatives to ABA such as the Developmental, Individual Differences, and Relationship-based (DIR®) program, the PLAY Project, individualized Early Social Interaction (ESI) and, Social Communication, Emotional Regulation, and Transactional Support (SCERTS®); and

Whereas, Current AMA policy supports the use of ABA through its advocation of coverage of ABA and the evidence-based treatment for autism and fails to recognize its harms or controversial nature within the community at large;

therefore be it RESOLVED… (American Medical Association [AMA], 2023, pp. 1179-1182)

As the proud leader of ICDL, I am thrilled to see our advocacy work making a difference.  It never moves as quickly as I would like, but it is moving and moving in the right direction. 

This is also an important step for all those in the broader DIR community outside of ICDL that have thought they needed to adopt aspects of ABA into their work, have been trying to combine ABA and DIR in some way, or think they have to use a service delivery approach modeled after ABA.  I understand that some thought this was the best strategic stance to take, but it is not the stance ICDL has taken nor will take.  DIR® is an evidence-based and effective approach to promote human development.  It is respectful, joyful, and allows each person to grow and develop in the context of their own authentic self.  I thank all of you who have stood with ICDL as we have held to our values with faith that others would fully recognize the limits and problems with ABA and would see the wonderful benefits of DIR®.  I am glad the AMA is moving in the right direction and I am hopeful others will follow. 

 

 

 

American Medical Association. (2023). AMA House of Delegates handbook (2023 Annual Meeting). American Medical Association . https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwiIuuTKqISAAxXKkYkEHTI2BLwQFnoECA4QAQ&url=https%3A%2F%2Fwww.ama-assn.org%2Fsystem%2Ffiles%2Fa23-combined-handbook.pdf&usg=AOvVaw0KbJS_HWN4tp6Jr-PMMGZn&opi=89978449

Tomorrow: ICDL Gala

TOMORROW!

 2022 Gala and DIR® Champions Awards Event

Sunday, October 30, 2023

4:00 - 6:00 PM US EDT
with a live-online concert performed by Blue Spectrum

 

DIR® Lifetime Champion
Dr. Kathleen Platzman

Dr. Platzman has passionately served ICDL and the DIR community for many years. She has been a leader and guide for so many in the DIR community. As a psychologist at Floortime Atlanta, an instructor in the DIRFloortime® Training Program, a mentor, a professor, and voluntarily serving as the Chief Advisor for the DIRFloortime® Training Program, Dr. Platzman has given so much to advance the mission of ICDL. The mission of ICDL is "to make a positive impact in people’s lives by promoting and championing a developmental and relationship-based approach to human development and learning." Every day she champions DIR and strives to make a great world where everyone has the opportunity to grow, develop, and flourish.

Come join us on October 30th to honor Kathy and to share your love for her and her dedication to all of us and to DIR.

2022 DIR® Champion Awards

We will be announcing five 2022 DIR Champion awards for worthy individuals and groups that have shown exceptional effort in championing DIR over the past year. Please join us on Sunday to celebrate these DIR Champions!

Special Live Online Concert!

Blue Spectrum

Gwendolyn and Gene Harshaw:

Following their son's lead.

 At 4 years old Zayne was diagnosed with autism. Gwen will share how they found strength through Zayne’s gifts instead of focusing on his weaknesses. Today, Zayne is a member of the band Blue Spectrum which has 2 other autistic members. He taught himself to play the guitar. Music has really transformed him from a painfully shy boy to an extremely confident musician. Gwen’s son’s diagnosis has transformed her life. She will share her personal journey as a parent of a child on the spectrum and how following his passion brought him, and her and her husband Gene, to places they never expected. Click here to listen to a sample of Zayne's amazing guitar skills. His performance will be an incredible ending to our 2-day conference.

ICDL and INAS

ICDL and the ICDL Foundation are proud to be supporting many great efforts including our sponsorship of the inaugural INAS Neurodiversity Conference.  Dawn-Marie Solais, the developer of the conference, and I had a conversation about autism, disability, and several other topics.  It was a nice little chat and a part of our joint effort to continually work to open minds about neurodiversity.  You can view the discussion here: https://youtu.be/Jw0fS1mj8G4

Collapsing the Play Triangle

I often end up in a conversation with parents and professionals I am coaching about what I call “collapsing the play triangle”. The image I create is of a triangle with the child at one point of the triangle, the adult (parent or professional) at another, and a toy at the third point.  Oftentimes I see parents and professionals putting forward lots of energy in getting the child to focus on the point of the triangle that has the toy.  This can be good because joint attention where the adult and the child are both engaged with the toy together is a very healthy and joyful process.  However, I very much want parents and professionals to think about how to collapse the triangle in a way that the adult becomes the play object. When this happens, the adult is the toy and thereby in playing with the toy the child is playing with the adult.  Essentially the triangle collapses and the child is interacting with the toy and the adult at the same time because the adult is the toy.  We hear adults often say as they reflect back on their process of learning DIR, “I had to learn how to play.”  I think becoming the play object is the biggest shift that is central to that reflective statement.  Adults often focus on finding ways of getting the child to attend to a toy or focus on a toy and say things like ,”look” or “see” or "come" as they present the toy in an exciting way.  But, that all changes if you realize that you are the best toy in the room. When you become the toy, when the child is intentionally playing with you, their brains are “lighting up” with connections and activity that is REALLY good for them.  Please keep in mind, this is not forcing the child to play with you or to interact in a way that creates distress.  This is about using rich affect and joy in an inviting and respectful way that creates the opportunity for engaging together.  It creates the opportunity for shared joy and circles of communication.  Simply put, it crates the opportunity for development.  So next time you play with a child, see how many play triangles you can collapse. 

Play, DIRFloortime®, and Neurodiversity Informed Practice

Over the last two weeks I have spoken at several conferences and events that were focused on neurodiversity, DIR, ethical considerations in autism services, and/or play. I received lots of questions about how we embrace neurodiversity in the play process of DIR®. So, I started a list of ideas. The following are my notes over the past two weeks. 25 points of consideration for therapists. See what you think. Let me know your thoughts. In part I am also writing this for all those out there that think DIRFloortime® is about imposing a neurotypical normalization agenda. It for sure is not. It is about helping the child grow and develop while respecting and valuing their own beautiful uniqueness.

1. Play is strength-based building on what the child is doing and is interested in. Play is not used in a manipulative way to get connection to then switch to a deficit-based intervention.
2. Follow the child’s lead in play.
3. The action is in the interaction. Development happens in the interaction of play.
4. Genuinely engage and join in the play with a child and help them expand and elaborate upon their own intentions, rather than coercing the child to play along with your intentions.
5. Play is not used to teach neurotypical norms. We honor the unique profile of each child and seek to understand them and help them develop in their own unique and neurodiverse way rather than seek to impose neurotypical or therapist determined norms.
6. Compassionate and naturalistic play is not enough. In many ways, more compassionate and naturalistic play that has the same goals of normalizing behaviors may actually be more problematic for the child’s psyche because it is a more sophisticated presentation of the same neurotypical normalizing goals of traditional behavioral discrete trial training, but just clocked in a pseudo loving interaction. This manipulation can foster the sense for the child that kindness and love are used to manipulate to get what you want.
7. Therapists need to engage and join in the play and become a part of the play in a full way. This is key in helping the child develop their internal capacity to understand and manage their own being and their own behaviors. This is different than using play to manage, change, or control behaviors that are determined by the therapist or anyone else to be unwanted [autistic] behaviors.
8. Avoid using rewards or punishments in the play. While some natural consequences will inevitably happen, it should never be the conscious intent of the therapist to give a reward or punishment. The child is not engaging in play to be judged by their play partner and we should not condition them to think that is the point.
9. Play is a wonderful opportunity for learning based on exploration and discovery. Introducing exposure and memory based tasks only detracts from the beauty of the play process.
10. Be very mindful of how modeling is used in the play. Modeling can be helpful in many ways, but modeling risks prompting a neurotypical and therapist led way of being. While some modeling will take place and can help in the development of communication, language, and other important ways, therapists need to be very careful not to impose neurotypical and therapist determined norms.
11. There are never explicit or implicit goals of indistinguishability. Through a process of self-reflection, therapists constantly have to be challenging themselves not to allow implicit goals of indistinguishability through. Normalization is never a goal.
12. Prompting should generally be avoided and absolutely never prompt for one single “right” response. Prompting for a single response is inherently based on a predetermined frame of reference that is often based on the therapist’s beliefs on what is normal or acceptable. When a therapist determines there is one right answer to a situation and prompts for that, they are determining the norm and imposing it upon the child.
13. Play is naturally a developmental process. Children develop their core social-emotional capacities through play. Play should focus on promoting development more than teaching. Children will learn in play, but it happens as they explore, discover, and develop. Adults often take the joy of play and turn into, “Now I have you, I am going to teach you that this yellow ball is yellow. ‘Say Yellow’ [holding up a yellow ball]” Does a five-year-old playing with another five-year-old ever hold up a yellow ball they know is yellow to ask the child they are playing with to “say yellow”?
14. The goal is to expand and to elaborate. If you focus on expanding and elaborating, you are promoting growth and development while fully valuing the child and avoiding imposing your own neurotypical and/or therapist determined perspectives.
15. Engage in co-regulation and the development of self-regulation rather than simply how to manage behavioral dysregulation. Many behaviorally focused therapists talk about “managing dysregulation” in play. If the therapist is managing dysregulation or even trying to teach the child how to manage dysregulation, this ends up being a “top down” more externally driven process. Joining in play gives us the opportunity to engage in co-regulation, this helps to develop an internal “bottom up” development of the child’s own self-regulation. We can all learn techniques of self-control which is fine, but within play we have the opportunity to use a natural co-regulating process to promote the development of self-regulation which is that internal sense in ones body that I am calm and OK in the world and I don’t have to constantly rely on external controls or even self-control “strategies” to cope. Rather, I can be “OK” and regulated from within. A more sophisticated way of saying it is that subcortical regulation can develop in play and that should be the focus. Teaching strategies that relate to how cortical activities regulate the subcortical systems has its place, but that is a teaching process and not as much of a developmental process. We work to keep play focused on developmental processes.
16. Engage with the child through their challenging moments that often present behaviors that some will refer to as “problematic” or “challenging” behaviors. This is different than focusing on changing or controlling behaviors. In the process of joining and engaging with the child through the difficult times, we foster the development of core capacities rather than simply extinguishing behaviors. For example, the goal should be to help the child develop the capacity to be able to successfully engage in shared social problem solving rather than to simply extinguish the meltdowns that can often happen when a child lacks this capacity. Extinguishing the meltdown won’t do anything to help the child create the requisite capacity for shared social problem solving that is needed to be successful in challenging social situations.
17. There is never a goal of extinguishing behaviors. Our goal in play is to promote development and growth. As that development and growth happens, behaviors that the child no longer needs to regulate themselves or their world or that they discover get in the way of engaging with the world they want to engage in may diminish, but extinguishing those behaviors is not the goal. For example, we do not set a goal of extinguishing hand flapping behaviors. In many cases, if the child becomes more regulated, engaged, and feels understood by their play partner, we may see less hand flapping (or we may actually see more), but either way, that is being driven by the child, not the therapist.
18. In regards to turn taking, therapists need to be more focused on engaging in back-and-forth circles of communication and interactions that will develop the capacity to engage in turn-taking in a meaningful way because the child wants to, not because it is a rule imposed by the therapist. Do not simply think of it as a social skill that needs to be taught.
19. Play can develop the capacity for social connection, communication, and interaction. This is the focus and we do not use play to simply teach skills that are deemed socially appropriate.
20. Seek to understand and to help the child feel and be understood. Feeling and being understood is the foundation for meaningful personal growth and development. There is potentially nothing more important.
21. Therapists should not be forcing face-to-face interactions. Therapists should be engaging with the child. In most cases, this will result in face-to-face interactions that are rich in eye contact. However, for some children eye contact may be overwhelming and the intense face-to-face interaction may be overwhelming. So, the goal is meaningful engagement that respects and values the child’s perspective and way of being.
22. Therapists should constantly adjust their actions and the environment to support the child’s individual differences. If something in the environment or in the actions of the therapist can be changed to better support the child’s individual differences, this should be done. (i.e. dimming lights if it is overwhelming; not wearing cologne if it causes discomfort for the child; not moving too quickly to accommodate a child with visual processing challenges) This can include sensory, motor, physical, or other individual differences.
23. Play should always respect and embrace the culture of the child and family. In addition to following the child’s lead in play we are also following the family’s cultural lead.
24. Always respect the child’s “no”. This does not mean the child will always get their way or be able to do anything they want, but we avoid forcing our agenda upon the child and we seek to foster a sense of agency for the child that includes the right to say “no” if something makes them uncomfortable.
25. Have fun and be a play partner the child is excited to play with.

That's my list. Did I miss anything?

 I would write this a bit differently for parents, but the same concepts generally apply.  

ICDL's New Name

  

I am excited to announce ICDL’s new name! 

The International Council on Development and Learning

ICDL will begin doing business as the International Council on Development and Learning as of today. This change is happening for three main reasons. 

First, it represents our commitment to be a continually growing and developing organization that provides forward-looking leadership as the world continues to evolve. The concept of an “interdisciplinary” council was groundbreaking 32 years ago when ICDL began, but we have progressed so much further now and it is no longer groundbreaking nor does it sufficiently represent our current transdisciplinary work. But don’t be alarmed, we are not abandoning interdisciplinary work. The difference now is simply that we have developed from being interdisciplinary to being much more transdisciplinary. You’ll see how this is impacting our training program as we unveil the newly revised DIRFloortime® professional certificate training curriculum in the coming months. 

In the near future, I will be writing more about the importance of a transdisciplinary focus and even engaging in antidisciplinary focused work to further our understanding of the entire whole person and not a person defined by the scope of the currently existing disciplines. This is such an important area for consideration and reflection. ICDL will continue to lead and challenge the DIR® community and the world at large to understand humans more holistically than ever before and we will work to support practices in the field that foster meaningful holistic human development. 

Secondly, we are changing our name to the International Council on Development and Learning because of the incredible international movement that ICDL is leading to bring a DIR-focused understanding of development and learning to everyone around the world. I am proud to say that ICDL now offers DIRFloortime® certificate courses in 16 different languages taught by professionals that are native speakers of these languages. We know that there are at least three more languages being added to the list in 2022 with initiatives underway in other countries around the world to build the capacity to have DIR® experts developed there too. For example, I am off to Japan in just a few days to spearhead our efforts there. When I started with ICDL in 2013, we were teaching DIRFloortime® courses in 3 different languages. By the end of 2022, it will be at least 19! This is being international!  

Finally, ICDL is shifting to be the International Council on Development and Learning because it better represents our leadership role in the field. ICDL is the future of development and learning. While ICDL has a strong deep 32-year history, our focus today is on leading into the future. We can fully respect and appreciate the history and hold true to the integrity of the evidence-based approach DIRFloortime® is while at the same time progressing into the future as we learn more and more from research, clinical practice, advocates, and the broader world in general. 

This week ICDL will be announcing several new future-focused initiatives and developments that will help you see the progressive work that is happening. The name change helps us catch up to where we have been moving in recent years and helps to define who we are as leaders into the future. ICDL is not only the Home of DIR® and DIRFloortime®, ICDL is also the future of development and learning.

ICDL and DIR® Professionals are Supporting Ukrainians

 ICDL's main focus is to train professionals that then provide DIR® based support to their communities.  While there are services that ICDL provides directly to families through our DIR® Institute, most of the DIR® services and supports around the world are provided by the thousands of ICDL trained professionals in the 74 countries where we have trained DIR® professionals. 

ICDL is proud to be supporting the wonderful ICDL DIRFloortime® Experts we have in Ukraine to serve their fellow Ukrainians in this horrific time.  So far, ICDL has committed $30,000 in grants and direct support.  This will help to keep our DIR-based experts practicing and supporting families in desperate need.  

In addition to the support ICDL is providing, many ICDL DIRFloortime® professionals are volunteering their time to provide much needed support.  Did you see the article in the Washington Post that highlighted the work of many including Galina Itskovich and Irina Filonenko?  Please check it out.  I want to personally thank Galina and Irina and all of the other amazing people in the DIR community that have been working to support Ukraine, its people, and its refugees.  

There is no hesitation on my part in regards to ICDL providing funding and support for people in need to have access to DIR during this challenging times.  However, we can not do it without your help.  Please consider making a donation to ICDL.  I work hard to ensure that every dollar donated goes directly to advocacy, services to families, or direct support like we are providing in Ukraine.  I sincerely would appreciate any donation you can provide.  

I hope this awful war ends sooner than later.  I stand with Ukraine in support of their country and their people.