Meet Dr Emile Gouws & his lovely wife Sammi Gouws

 Recently I had the opportunity to speak at World Autism Awareness and Acceptance events in South Africa with ICDL's Board President, Dr. Emile Gouws.  We also were interviewed by a number of people, including for the below podcast.  I want to share this specific podcast with all of you so you can meet Emile and Sammi. I am excited by the impact ICDL is having internationally in advancing positive perspectives on development and learning.  When we do this well, we can support all people, including autistic people, to have meaningful experiences throughout the lifespan. 

Intensity Matters???

Historically, theorists, researchers, and practitioners alike have often presented that the intensity of therapy and therapeutic interactions for autistic children needed to be very high in order to get results.  While there is logic behind this guidance, we have been getting more information of late that the intensity may not need to be what we once thought. Nor may it need to be what therapy centers owned by equity firms may want it to be. 

What have we been learning?  Well, here is some information for consideration:

• Some DIRFloortime studies like the Solomon et al. (2014) and Pajareya et al. (2019) utilized around 12 hours a week and saw positive results.
• Rogers et al. (2021) compared 25 hours of ABA and ESDM to 15 hours and saw no significant difference in outcomes.  
• There isn't robust evidence that the benefits of early childhood interventions to young autistic children increase when those interventions are intensified (Sandbank et al., 2024).
• Autistic self-advocates are stressing that an autistic child needs time to be a child and everything the child is doing should not be therapy.  This can be seen in the Autistic Self-Advocacy Network’s For Whose Benefit?: Evidence, Ethics, and Effectiveness of Autism Interventions.
• Money may be a motivator for advocating for high intensity services.  You can read a telling article on the topic of equity firms that own therapy centers by clicking here. 
  

What do we get when we add up this emerging information?  We get an understanding that the high level of intensity that we once thought was needed, may not be needed.  In addition, when you consider the feedback from self-advocates, being in therapy all the time may also have negative consequences for the well-being of the child.  

In DIRFloortime practice, and in most of the studies that have been conducted on DIRFloortime, the hours of professional therapy is actually quite low.  Often it is about 2 hours a week or less.  The additional 12 to 20 hours that has been studied are therapeutic interactions provided by the caregivers.  

20 hours a week can be a lot for both the child(ren) and the caregiver(s).  Based on the emerging research and perspectives from autistic self-advocates, it seems we need to modify the old recommendation and adjust our recommendations to be about 12 hours a week instead of 20 or more.  It may be that we don't even need to get to 12, but there is no clear research to show how beneficial less than 12 is for autistic children.  Nevertheless, I have talked to many families that cannot get to 12 hours a week and they still have seen wonderful positive progression for there child when they utilize DIRFloortime.  

Part of it may not just be the implementation of DIRFloortime.  It may also be the embedding of DIR into the family culture.  For example, embedding a respectful and joyful focus on helping the children in the family grow and development in the context of their own authentic selves instead of fixing them or trying to make them look neuortypical may be as valuable as the actual therapeutic techniques that are used. 

Bottom line: What I always tell families is to go for 12 hours if you can.  See if you can get there. But remember, it all starts with one, and one is better than none!  

What makes us humans?

 

I just asked ChatGPT, “What makes us humans?”  Here was the response that was generated:

What makes us human is a mix of biological, cognitive, emotional, and social factors that set us apart from other species. Here are some key aspects:

1. Consciousness & Self-Awareness

We have a deep understanding of ourselves, our emotions, and our existence. We can reflect on our past, anticipate the future, and question our own purpose.

2. Complex Thinking & Problem-Solving

Humans can think abstractly, create complex ideas, and solve problems beyond immediate survival needs. We use logic, reasoning, and creativity to innovate.

3. Emotion & Empathy

We experience deep emotions like love, joy, sadness, and guilt. Our ability to empathize and connect with others emotionally is a core part of our humanity.

4. Language & Communication

Our ability to create and use language (both spoken and written) allows us to share complex ideas, preserve knowledge, and build civilizations.

5. Morality & Ethics

Humans develop moral values, a sense of right and wrong, and societal rules. We can act selflessly, consider the well-being of others, and make ethical decisions.

6. Creativity & Art

We create art, music, literature, and culture—not just for survival, but to express emotions, tell stories, and leave a legacy.

7. Relationships & Social Structures

Unlike many animals, humans form deep social bonds that go beyond survival. We build families, communities, and societies based on shared values and cooperation.

8. Curiosity & Innovation

Humans constantly seek knowledge, explore the unknown, and push boundaries. Our curiosity has led to scientific discoveries, space exploration, and technological advancements.

9. Imperfection & Growth

We make mistakes, learn, adapt, and grow. Our ability to recognize flaws and strive for improvement is a defining part of being human.

In short, being human is about thinking, feeling, creating, and connecting—with ourselves, each other, and the world around us.

I then searched the results for the word “behavior”.  Interestingly, but not surprisingly, behavior did not come up a single time in generating a definition of what makes us humans.  Rather, it was words like social, connection, communication, curiosity, thinking, emotion, empathy, imperfection and growth. 

In many ways, this is why DIR works so well.  It helps us, as imperfect humans, grow.  It is focused on human connections and how those connections actually help us expand our capacity for engagement, communication, problem solving, thinking, curiosity, and reasoning, to name a few.

While those that use ABA can measure outcomes easily, behaviors are not what makes us humans and changing behaviors is not the key to helping us grow and develop as humans.  Feeling and thinking are much more the areas we need to focus.  Feelings come first and as we feel the world around us and connect with others, we then develop and deepen our capacity for thinking in innovative, creative, unique, and meaningful ways.  All of these words, and each of the items ChatGPT highlighted relate to the developmental capacities that are described in DIR and are the core focus of all goals of DIRFloortime.  If you are a Floortimer, I am certain you will see particular Functional Emotional Developmental Capacities (FEDCs) clearly associated with each of the nine points ChatGPT gave for what makes us humans.  And if you are an ABAer, I am sorry to say that you won’t see behavior modification, extinction, or reinforcement in this definition of what makes us humans.  

DIR helps us grow and develop in the ways that make us humans.  ABA helps humans behave…but, that is not what makes us humans! 

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