Advocacy
Advocating for a world where individual differences are embraced and everyone achieves their fullest potential.
DIR® Advocacy
Based on Respect, Supported by Science
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. Our vision is a world where individual differences are embraced and everyone achieves their fullest potential. We embrace neurodiversity and advocate for approaches that focus on promoting human development and help children and adults emerge from what may be disabling them in a respectful and accepting manner that appreciates every person for their unique individual differences. Through education and awareness, ICDL strives to make DIR® based approaches such as DIRFloortime® available and accessible to all children and families.
Below are resources to assist those who are advocating for DIR® approaches, and in particular DIRFloortime®.
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 in June, 2023, 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 stated, “AMA supports coverage and reimbursement for evidence-based treatment of Autism Spectrum Disorder including, but not limited to, Applied Behavior Analysis Therapy”. Now, the new policy does not specifically name ABA and includes all evidence-based services. The new policy can be viewed by clicking here. It is a simple, but important change. The resolution no only cited many problems with ABA, it also cited the evidence for DIR as part of the justification for the change. This change is indicative of the changes being seen in the field moving away from the past dominance of ABA to a much stronger focus on DIR.
Ethics and Autism Services
ICDL is proud to have been a primary sponsor of the Autistic Self Advocacy Network's (ASAN's) white paper entitled, "For Whose Benefit: Evidence, Ethics, and Effectiveness of Autism Interventions." As the ASAN website indicates, "The white paper discusses autistic peoples’ perspectives on the ethics and purpose of autism interventions. It explains the ethical problems at the heart of the most popular autism intervention, Applied Behavioral Analysis (ABA), as well as the lack of evidence to support ABA. And it examines how similar problems with both ethics and evidence can show up in other therapies. Finally, it gives initial ethical guidance on what’s helpful and harmful in autism services and research." ICDL encourages everyone to read the paper and we require any individual or organization we contract or partner with to avoid all of the "Never Acceptable and Red Flag Practices to Avoid" outlined in the document. Please click here to download the white paper.
Medicaid News
We are pleased to see that more and more states in the United States are adding DIRFloortime as part of their Medicaid benefit for children up to age 21. This has been too slow in coming, but we are finally seeing it happen. States like New Jersey, Illinois, and Minnesota have comprehensive DIR benefits and are good models for other states to reference. Other states are using various waivers such as Home and Community-Based Services waivers to provide access for families to DIRFloortime. Please click here for a listing of the US State Medicaid Director's offices to inquire and/or advocate.
American Academy of Pediatrics
In a January, 2020 report by the Council on Children with Disabilities, Section on Developmental and Behavioral Pediatrics of the American Academy of Pediatrics entitled "Identification, Evaluation, and Management of Children With Autism Spectrum Disorder", stated,
"Intervention for young children also may be derived from developmental theory, which is focused on the relationship between the caregiver’s level of responsiveness and the child’s development of social communication.
Through interaction with others, children learn to communicate and regulate emotions and establish a foundation for increasingly complex thinking and social interaction. Therefore, developmental models designed to promote social development in children with ASD are focused on the relationship between the child with ASD and his or her caregiver through coaching to help increase responsiveness to the adult (ie, the interventionist or parent or caregiver) through imitating, expanding on, or joining into child-initiated play activities. This approach may address core symptoms of ASD, such as joint attention, imitation, and affective social engagement.
Developmental models for intervention are focused on teaching adults to engage in nondirective interactive strategies to foster interaction and development of communication in the context of play. One such approach is known as DIRFloortime (The Developmental, Individual Differences, and Relationship-Based model). "
We have found that often times Pediatricians are not as familiar with DIRFloortime since it is a newer approach than ABA. The inclusion of Floortime in this report can be very helpful information as you discuss your options with your pediatrician.
Hyman SL, Levy SE, Myers SM; COUNCIL ON CHILDREN WITH DISABILITIES, SECTION ON DEVELOPMENTAL AND BEHAVIORAL PEDIATRICS. Identification, Evaluation, and Management of Children With Autism Spectrum Disorder. Pediatrics. 2020 Jan;145(1):e20193447. https://pediatrics.aappublications.org/content/145/1/e20193447
RESEARCH & EVIDENCE-BASE
The evidence-based for DIR continues to grow and become stronger and stronger. As objective research based reviews are revised, we are seeing that DIRFloortime is moving up from the "Promising" category many have listed it as in the past to "Evidence-based." Below are a few key items for the ICDL Research page that can be useful in advocating for DIR-based services:
Research on Social Work Practice indicating DIRFloortime as an Evidence-Based Practice (EBP)
In the Project AIM: Autism intervention meta-analysis for studies of young children. Psychological Bulletin, 146(1), 1–29. https://doi.org/10.1037/bul0000215 they found that developmental approaches had stronger evidence to support effectiveness than behavioral approaches.
The European Society for Child and Adolescent Psychiatry practice guidance for autism: a summary of evidence-based recommendations for diagnosis and treatment indicates that "At the present time, the strongest evidence for interventions for young autistic children comes from large-scale, randomised trials of developmentally based approaches designed to facilitate social communication between very young children and their parents. The main focus is on adult–child synchrony, with parents learning to respond to their child’s communicative cues in ways that encourage spontaneous communication, and create opportunities for shared attention, child initiations, and spontaneous play."
The National Clearinghouse on Autism Evidence & Practice lists Parent Implemented Interventions such as Floortime as Evidence-Based Practices in their most recent edition of the Evidence Based Practices for Chidren, Youth, and Young Adults with Autism.
The above is just a sample. You can find much more on the DIR Research page of this website.
We have received many questions about the National Autism Center's National Standards Project that has listed Floortime as "unestablished." It is very important to note that the National Autism Center is a part of the May Institute and is not an independent entity. This is a $103 million a year service provider with 150 service sites around the country where they are providing ABA. The board of the National Standards Project is dominated by professionals that work from a behavioral perspective. On their website, they claim on their "About" page that "May Institute is a nonprofit organization that is a national leader in the field of applied behavior analysis". That is their focus. This report has many flaws and is not objective. The 2015 report is also conveniently based on old research that precedes much of the DIR focused research that has come out in the recent years. Just because they are using the name "National Autism Center" please don't assume they are an independent body. The May Institute is a very large ABA service provider with clear conflicts of interest and financial motivation to advocate for ABA.
INSURANCE COVERAGE
THE AUTISTIC SELF ADVOCACY NETWORK CONTINUES TO DEVELOP RESOURCES ON INSURANCE COVERAGE FOR AUTISM-RLEATED SERVICES
ICDL is proud to be a sponsor of ASAN's project to develop resources on insurance coverage for autism-related services. Click here to go to the ASAN page with the developing resources.
Read a letter ICDL sent to all the US State Medicaid Directors
Local, State, and Regional Coalition leaders: please sign in to learn more about advocating for insurance coverage.
INTERVENTION GUIDANCE
The National Institute for Health and Care Excellence has published guidelines including "Autism in Under 19s: Support and Intervention." In the reviews related to these guidelines, some of the research on Floortime was reviewed as part of the research on psychosocial interventions. The guidance provided is consistent with the goals of DIRFloortime. The 2016 Surveillance Report's "Impact Statement" in the review of research on psychosocial interventions including research on a Floortime program states "The new evidence reported improvements in core features of autism using different psychosocial interventions: Theory of Mind, comprehensive psychosocial interventions, parent training, social skills interventions, therapeutic horseback riding, music therapy, additional language instruction, and early interventions. Although these interventions were not specific social-communication interventions, they targeted the core features of autism suggested by the guideline: joint attention, engagement and reciprocal communication. Therefore, new evidence supports the benefit of interventions targeting the core features of autism: joint attention, engagement and reciprocal communication."
Behavioral Services Just don't work Well
The above heading is a provocative statement, but it is not just an opinion. Many have been saying this for years and more and more studies and reviews are supporting the statement. Click here for a recent research study examining outcomes when using behavioral interventions with preschoolers.
ABA
ICDL promotes DIRFloortime because it is an approach that is effective, respectful, evidence-based, and truly addresses the core developmental challenges associated with autism and other developmental and behavioral differences and challenges. We also support and advocate for other DIR-based and developmentally-based approaches besides just DIRFloortime. In general, we know that children (and people in general) are more than just the behaviors we see and we need to engage and support people in a respectful way to promote their development more broadly than just focusing on behaviors. Because ICDL advocates for parent choice, we typically do not advocate against access to ABA. Nevertheless, we are open about our concerns with ABA and the ABA industry. You can read a blog from ICDL's CEO, Jeff Guenzel, on this topic by clicking here.
Most professionals and parents that utilize the DIR model and DIRFloortime approach share the concerns many autistics have about ABA. ICDL also shares these concerns. We have concerns about ABA, the way ABA is used, the lack of an understanding of human development, the behavior normalizing goals, the possibility of unintended negative consequences, and the inherent limitations. ABA has many limitations and is not the broad answer for autism treatment that many ABA advocates present.
An article published in March, 2024 entitled, "America’s Most Popular Autism Therapy May Not Work — and May Seriously Harm Patients’ Mental Health" outlines some of the things we have learned about ABA and offers some contrast to DIR from families that were interviewed. One of the research studies cited found that children that were exposed to ABA had a dramatically higher rate of PTSD than children not exposed to ABA.
To best understand the concerns about ABA, it is best to ask an autistic. We suggest you watch the below video from "Ask an Autistic."
Detailed reviews of the effectiveness of ABA in the real world are actually quite hard to find. Most research studies on ABA look at isolated skills and behavior reduction. But, often do not look at the bigger picture. The U.S. Department of Defense was required to do a review of autism services for the Department's health insurance for the military and others called TriCare. ABA is almost the exclusive autism specific service that was being offered by TriCare. In late 2019 the U.S. Department of Defense provided their report to the U.S. Senate and indicated, "...beneficiaries in the Autism Care Demonstration had little to no change in symptom presentation over the course of 12 months of applied behavior analysis (ABA) services, with an additional 9 percent demonstrating worsening symptoms. Click here to read the full report.
TRICARE Report on ABA Benefit
TRICARE is the health insurance coverage for many in the US military and Department of Defense. The US Senate required reporting to be completed on the Autism Care Demonstration which was an ABA benefit that was provided to children covered under the benefit. The report found that 76% of those that received the services had little to no change and 9% actually worsened. This is a very telling report about the real-life impact of ABA and it tells us that in this case, it did not work. Click here to read the report.
PUBLIC POLICY
Parents and individuals have a right to a choice of treatment options. ICDL advocates for public policy that supports choice. Public policies should not narrow the options to any one modality or intervention, but rather allow for the use of all reasonable interventions. Many public policies have used "evidence-based" as a criteria. While this approach has logic, it often limits many good options as well. Nevertheless, DIRFloortime is an evidence-based practice and clearly should be one of the available interventions.
Here are some recent public policy examples that we are pleased to see:
DIR RECOGNIZED IN BRITISH COLUMBIA
In British Columbia, children diagnosed with autism receive funding, which they can use to choose a service provider from an approved Registry of Autism Service Providers.
Up until now, ABA has been the the main therapy available, along with clinician supports. However, after 10 years of requesting, the Ministry for Children and Families Special Needs have just included DIR Floortime, RDI, and other approaches under the category of “Developmental Social Pragmatic Approaches” in the newly revised “Parent Handbook: Your Guide to Autism Programs.” This guide is provided to parents when their child receives a diagnosis of ASD.
MEDICAID WAIVERS
Some states, like Massachusetts, have implemented Medicaid waivers to cover intensive in-home services for autism like DIRFloortime. We encourage all states to implement such waivers since we know intensive in-home services can have a positive impact on child development, especially with young children.
EDUCATION
Good News: The Department of Education’s Office of Special Education Programs (OSEP) released a Dear Colleague letter to States expressing concern that schools may be inappropriately limiting services offered to autistic children to those offered by Applied Behavioral Analysis (ABA) therapists.
LOCAL, STATE, AND REGIONAL DIR® COALITIONS
There are many local, state, and regional DIR® Coalitions that exists throughout the world. These local groups advocate for DIR® by raising awareness and educating the public about DIR® and DIRFloortime®. If you are interested in creating a DIR® Coalition in your areas, please contact the ICDL CEO, Jeff Guenzel, at jguenzel@icdl.com.
DIRFloortime® ADVOCACY FORUM
Click here to request membership to the DIRFloortime Advocacy Forum.
"Blended" Approaches
Many people ask us if we support "blended" models that integrate behavioral and developmental approaches. There is no simple answer to this because there are countless variations out there. Some much better and some much worse than others. We believe that a DIR program with Floortime as a core intervention in the context of a comprehensive DIR program is very effective. But, in regards to blended models, we have found that models that are DIR-based, or in other words based in a developmental relationship-based perspective, that integrate in behavioral techniques are generally much better than behavioral approaches that attempt to integrate in a developmental relationship-based techniques. This difference is significant because it is critical for practitioners to have a deep understanding of child and human development. If you have this deep understanding, you then have a much better understanding why techniques work. Also, coming from a developmental perspective means your goal is to promote development and not to "fix" or "normalize" someone.
ABA Research
As with all research, it is important to examine the studies closely. Many argue that the research that ABA practitioners cite so proudly is not nearly as strong or applicable as one may assume. For example, in the hallmark ABA study in 1987 by Ivar Lovaas (many consider to be the father of modern ABA), there were many flaws in his study and it does not necessarily apply to current ABA treatment. Even though the Surgeon General at the time cited the 1987 Lovaas study, the study had many critics. For example, Lovaas did not randomly assign children to the experimental groups. Random assignment to experimental and control groups is a standard practice for good research. Furthermore, at the time, contingent physical adversives (physical punishments) were used. Most current practitioners and parents have long since stopped using physical pain to shape behavior. If current practitioners are not using physical adversives (pain), then this antiquated study no longer applies, is no longer relevant, and should not be part of any evidence-base claims for the current application of ABA. Yet, you will still see this study cited as part of the evidence-base.
There are also many studies that bring to question the ABA research base that is touted so proudly. In a 2009 systematic review of Applied Behavioral Interventions, the conclusion was that there is inadequate evidence that Applied Behavioral Interventions are more effective than standard care for children with Autism.
Here is a more recent study that suggests that some aspects of behavioral interventions may not be as helpful as once thought: New research suggests that for those with autism, repetition of information actually hinders learning in new situations. The findings challenge behavioral approaches that emphasize repetition as a key to the intervention. The research was published in Nature Neuroscience.
Recently there have been more studies and reviews published that are raising questions about ABA Research. In this paper, many undisclosed conflicts of interest are uncovered.
ICDL supports all beneficial autism-related services and advocates for parent and client choice. Our intent is not to debunk ABA, but we also recognize the limitations of behavioral approaches and know that there is much more we can do. ABA has become the most well-known approach for treating autism. The 1987 Lovaas study emerged when we knew very little about autism and child development. Since that time we have learned a great deal. We now know that there is much more that we can do to unlock the world for a child, adolescent, or adult with autism besides using consequences and rewards focused on normalizing their behaviors. While ABA may be the best known approach for treating autism, DIRFloortime is the best know approach for engaging autism. It is a difference of one word, but it can mean a world of difference for an autistic individual.
Advocating to Avoid Ableism
ICDL is committed to working to avoid ableism. Disability rights activist Lydia X. Z. Brown (a keynote presenter at a past ICDL conference) has published a comprehensive glossary of ableist terms that we encourage everyone to read and we require any individual or organization we contract or partner with, at a minimum, to avoid ableist language.