This week we’re talking about a new company called Positive Development, which offers developmental therapies paid for by insurance, currently in Florida, New Jersey, California, and coming soon to Illinois. Maryanne Nugent is the Chief Operating Officer and the parent of a 23-year-old son who received DIR/Floortime when he was 3. Returning guest, Dr. Joshua Feder, is the Medical Director, an Expert Training Leader in the Developmental, Individual differences, Relationship-based (DIR) Model and a child and family psychiatrist, among other things as we know from our past podcasts.
by Affect Autism
What is Positive Development?
Dr. Feder says that at Positive Development, they’ve pulled together their own version of developmental, relationship-based intervention. Dr. Feder had a father and has a son both on the spectrum. He has also worked in the field since the late 1970s.
He points out that while the prevalence of autism diagnosis has skyrocketed, the dominant intervention, Applied Behaviour Analysis (ABA) has been unable to meet the demand, despite being a $17B industry.
Dr. Feder showed a Venn diagram outlining how behavioural approaches have less parent involvement and more structured whereas developmental approaches are very parent-inclusive, and are tied to social-emotional learning and the internal motivation that the child has, he explains.
But both, he continues, work on cognitive, motor, and communication skills, and both have evidence. The research base has grown astronomically for ABA, but the quality has not been as good as we’d like, Dr. Feder states.
The research for developmental approaches has soared, especially in the last 15 years which has lead to recognition by the American Academy of Pediatrics, by New Jersey Health, which just put Floortime on Medicaid, and by the country of Australia, to name a few.
It’s also recognized by the Autism Self-Advocacy Network (ASAN), who worries about whether the outcomes in ABA approaches are relevant, whereas they have quite a bit of support for developmental approaches meeting the needs of meeting people living happily and meaningfully.
Seminal Effect Size Study
Dr. Joshua Feder is the Editor-in-Chief at the Carlat Child Psychiatry Report, where they recently recorded a podcast with Dr. Micheal Sandbank about her seminal study about effect size for trying to compare developmental-relationship-based approaches (DRBI), naturalistic-developmental-behavioural-based approaches (NDBI), and behaviourally-based approaches.
There wasn’t enough good data to find an effect size for the traditional Applied Behaviour Analysis (ABA). It’s an incredible study because it really showed the place in the field of development-relationship-based approaches being quite legitimate evidence-based practice.
Positive Development is somewhat founded on this newer research. (See Dr. Feder’s podcast here on the Move Towards Developmental Approaches).
The Difference Between Behavioural and Developmental Models
Behavioural models look at surface behaviours such as withdrawal, aggression, fixations, perseverative thinking, etc. whereas developmental models look at those as well, but focus on everything underneath including motor planning, emotional self-regulation, sensory sensitivity, medical co-morbidities, and more, that lead to behaviours on the surface. We don’t suppress behaviours in a developmental approach, but join in the interests of the autistic person to facilitate interaction.
In helping someone be part of the crowd a behavioural approach might teach questions such as, “What’s your favourite colour?” whereas a developmental approach will facilitate interaction around commonalities. And, with dysregulation, we don’t ignore it until it goes away in a developmental approach; we lean in and join, enough to help someone co-regulate to become more resilient rather than suppressing or numbing the emotional experience. The model is a WAIT-JOIN-BUILD model. It’s what the paraprofessionals working with the parents encourage the parents to do.
First, observe and then gently join in and be part of the child’s world, then build on those ideas together to co-create, learn, communicate and socially problem-solve. Dr. Feder also covered the DIR Model’s Functional Emotional Developmental Capacities that they focus on at Positive Development from being calm, connecting, responding, expanding, to pretending, bridging, and reflecting.
Evidence Base and Outcomes
Dr. Feder went over some of the research base for the developmental models. He started with the MEHRIT study for DIR/Floortime, the PLAY Project, and Project Impact, which all focus on similar things including emotional regulation, sensory and motor function, shared attention, social engagement, purposeful communication, intentionality, social reciprocity, social problem-solving, and representational and symbolic play. He then listed the similar outcomes that developmental approaches look for including social communication and family and client quality of life, to name a few, then decreasing anxiety and stress and dependence on services, for example.
In terms of the data, Dr. Feder highlighted how the evidence for the PLAY Project was very convincing because it was analyzed independently not by Dr. Solomon’s team. He then reviewed some of their results and how much it outperformed the TRICARE government study on ABA. Next, Dr. Feder reviewed the differences between an ABA Model, which is expensive, has limited parent participation, and providers working in silos whereas the Positive Development Developmental Model is parent-inclusive, is less expensive, and is collaborative and multidisciplinary.
The outcomes measures that Positive Development will be using includes the Functional Emotional Assessment Scale (FEAS) to measure where the child is developmentally, or the Greenspan Social-Emotional Growth Chart, which measure within our models. Dr. Feder says that others want to know how kids are doing on the broader measures of autism as well, so they also use the CARS-2, which is similar to the ADOS, but you can do it over the internet when there’s a pandemic, Vineland which measures broader adaptive behaviours, and that insurance companies like to see, the PSI which measures parent stress, and service costs and dependency on services over time.
The conservative estimates are that the cost of services with Positive Development is about 15% less per year per child. This is due to the emphasis on the parents mediating the intervention, and more emphasis on mental health input. Insurance companies think they can save money, the kids will do better, and the parents will be happier which is better for everyone.
The Positive Development Team
The Positive Development team consists of a mental health person (such as a Psychologist), Occupational Therapist, Speech and Language Pathologist, Parent Educator, Care Coordinator, and a Developmental Clinical Coach. The Care Coordinator ensures this is an integrative approach that makes it so helpful for the family so that all of the providers are using the same information and can all attend the meetings, whether it’s about school placement or other concerns.
The family is treated as a team with one unified and integrated assessment document that contains all the program goals, supports, and notes. Maryanne adds that the parent stress indicator is a great measure that helps address the entire family because if the parents are stressed, the child is not making the same progress. This is a family-focused service.
Changing the Culture of Autism Support
Positive Development is a start-up aiming to change the culture of the current state of autism treatment so that it opens the door for approaches like DIR/Floortime to be funded by insurance, to bring in evidence-based developmental approaches that are much more humane. It’s so much more equitable as well, Dr. Feder adds. It addresses some of the disparity in services as well that have been only out-of-pocket and inaccessible to so many. Medicaid and insurance will pay now, which should allow so many more families to access these services.
Maryanne shared a story of how her son was the 7th grandchild and her father couldn’t really understand sensory integration. She reached over and touched the back of his neck and he swatted her hand away. She explained that for many people that wouldn’t bother them, but for his brain, it was a sensory input that bothered him. She told him to imagine that he had 20 of those things coming at him all the time, and he finally started to understand. This helped change the culture in her family.
Advocacy: We Need Your Voice!
Maryanne adds that if autism is truly a spectrum, then there is a wide range of support needs, yet governments are saying that there is only one treatment model for this support. It doesn’t make sense. Dr. Feder is involved in policy advocacy and in California right now there is a law likely going to the Governor’s desk in the next month or so, so there is a letter writing campaign. Please consider writing a letter, even if you’re not in California! The Interdisciplinary Council on Development and Learning has housed the advocacy efforts for a number of years, Dr. Feder explains, to help with legitimate lobbying, and Profectum has also contributed funds to the effort.
Coming up soon, on August 7th, the DIR Coalition of California is holding their annual FUNdraiser. Please check it out and attend LIVE! We need the contributions to advocacy to make all of our work possible. We need the ‘D’ word!
Dr. Feder sees what they’re doing at Positive Development as an ecosystem. They’re developing a form of developmental, relationship-based intervention. It learns from the PLAY Project, ICDL, and Profectum along with others like Jonathan Green in the United Kingdom. You need to have a rich grouping of developmental models that are put together in a way that can be operationalized, brought together and scaled up.
They learned from the PLAY Project what a fidelity model is. You have to verify what everyone is doing in order to be able to compare it for research. Dr. Feder believes that if you don’t have that rich grouping of slightly different models that you learn from, then your model gets stagnant and your model doesn’t grow and development, so they aim for the organizations to all rise together and all learn together, he asserts.
I brought up how incredible it will be to see the next generation of autistic children who have had developmental over behavioural approaches. Dr. Feder remembers them being at a DIR Coalition of California event about a decade ago where his son was interviewed with him and his wife about his childhood. He didn’t remember much about Floortime, Dr. Feder points out–like many adult self-advocates who share their experiences of trauma with the traditional interventions they received–perhaps because it was enjoyable.
Positive Development hired autistic self-advocate, Haley Moss, to do some webinars with them and they asked her what it was like as a child when people came over. She said she was an only child, so it was wonderful because they would bring toys and play with her. I summarized what I read from self-advocates as just wanting to be treated like people and be supported, not like specimens to be trained. When you have an autistic child, society tells us it’s tragic. Affect Autism tries to be the bridge between the parent experience and the good experience of the child.
Families have challenges and do require support as autistics require supports for their disabilities, but I attempt to show parents that there is a better way that is respectful and more harmonious for everyone. These are human beings who are part of our society and we want to treat them as such. A move towards developmental approaches is a move in the correct direction. Dr. Feder highlights that struggles like the one I mentioned of not being able to trim my son’s toe nails are real and we need to figure out a way to help.
The general health of our family members is less because it’s harder to access care and advocate for themselves, Dr. Feder continues. They have things like his happening and it’s hard to know how to help them. Maryanne says things do get better as a parent. I have heard the other side, too: that things that were fine get harder. The things that have to get done like vaccinations can be so tough when you have to put your child through discomfort. You can talk about it in advance, prepare as much as you can, and talk about all the fun you’ll have afterwards after we just get through it quickly, but it is really tough.
There are so many wonderful gifts and shared moments of joy, too, that comes with having an autistic child. I appreciate Maryanne’s involvement in Positive Development, having gone through the experience as a parent in order to help families navigate services. Parents come in focused on different areas of their child’s development. It’s helpful to navigate this for them. Dr. Feder jumped in to add that he sees nothing wrong with giving rewards now and then, and that Benjamin Franklin said you can’t spoil a child with too much attention or love.
Dr. Feder and I did a podcast a few months back on Accepting Reality and he points out that the Acceptance concept went into play with the Autism Society of America this year where they used the term “Autism Acceptance Month” instead of “Autism Awareness Month“. It echoes our developmental approaches. When he meets a child on the spectrum as a doctor, he wants to know what the world looks like through that child’s eyes. He doesn’t want to change the child; he wants to learn from that child, which is entirely different from the ‘awareness’ model, he explains.
Dr. Feder understands that kids are having real challenges and it hurts for them and for families, but when we use the ‘awareness’ model where we’re saying how awful it is, and how it’s a disorder, that’s the kind of thing that makes you sympathize with people killing their children. An ‘acceptance’ model is about embracing and learning from everybody, and building a world that’s for everybody. This is what developmental models and Positive Development is all about, he asserts.
This week's PRACTICE TIP:
This week let’s think about accepting our child for who they are. What aspects of understanding their ‘D’, ‘I’, and ‘R’ helps you to do that?
For example: I understand that when my child asks the same questions over and over again he is feeling anxious, and hearing the answer helps his regulation. Being patient with him and answering his questions to the best of my ability helps our relationship because I accept his needs without trying to stop him from asking questions, and he learns that he can trust me and feel safe with me and come to me when he is anxious.
Thank you to the Positive Development team for telling us about this new service. For more information please see their website here. If you enjoyed it and found it useful, please consider sharing it on Facebook or Twitter and feel free to put relevant questions or comments in the Comments section below.
Until next week, here’s to affecting autism through playful interactions!