Advocacy

Advocating for a world where individual differences are embraced and everyone achieves their fullest potential.

DIRFloortime® Advocacy

Through education and awareness, ICDL strives to make DIRFloortime® available and accessible to all children and families in order to meet our organizational vision of "a world where individual differences are embraced and everyone achieves their fullest potential."

Below are resources to assist those who are advocating for DIR® approaches, and in particular DIRFloortime®.

American Academy of Pediatrics

In a January, 2020 report by the American Academy of Pediatrics entitled "Identification, Evaluation, and Management of Children With Autism Spectrum Disorder", they 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.296,318320 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.296,297,321,322

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.

ASHA BOARD CERTIFIED SPECIALIST IN ASD

ICDL joins the SLP Neurodiversity Collective in their concerns about the development of an ASHA Board Certified Specialist in ASD Certification. We encourage others to read their letter to ASHA and share your concerns with ASHA today! Please send an e-mail with a copy of or link to the SLP Neurodiversity Collective letter indicating your support to the following email addresses. ASHA needs to hear from everyone that is concerned about this, not just ASHA members. But, if you are an ASHA member, please make sure you indicated your ASHA number in your communication to ASHA.

ASHA Board of Directors: governance@asha.org

ASHA Concerns: concerns@asha.org

Lynn Kogoel, Chair, Autism Specialty Certification Board: lynnkoegel@gmail.com

ASHA Specialty Certification Committee: SpecialtyCertification@asha.org

More Information

An Open Letter to ASHA from Neuroclastic

Change.org Petition

autismspecialty.org/asha website

ASHA's guide on establishing a clinical specialty

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." There were two reviews published in the past year that have made this indication already (please see our research page for details). Below are a few key items for the ICDL Research page that can be useful in advocating for DIR-based services:

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."

ABA

ICDL promotes DIR Floortime because it is an intervention that is effective, respectful, evidence-based, and truly addresses the core developmental challenges associated with autism and other developmental and behavioral challenges. We also support and advocate for other DIR-based and developmentally-based approaches besides just DIR Floortime. 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 answer for autism treatment that many ABA advocates present.

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."

DIR ADVOCACY TALK WITH JOSHUA FEDER AND JIM LANTRY

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.

The DIRFloortime Coalition of California is a great example.

ICDL provides resources to local, state, and regional coalitions. If you are already a registered DIR Coaltion leader, please sign in here for more resources. If you are not yet registered with ICDL, please e-mail 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.

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.

A Message from Ari Ne'eman

The Founding Past Executive Director of the Autistic Self-Advocacy Network