Dr Rogers: "Focused on improving quality of life, abilities, improving participation."
ESDM, the comprehensive behavioural early intervention approach for children with autism, ages twelve to 48 months, went higher than the Denver mile. ESDM – the Early Start Denver Model – is being used all over the world, manuals got translated, therapists and parents started to work with it everywhere. June 2015, professor Sally J. Rogers will be explaining the rise of ESDM as a keynote speaker at the ESCAP Congress in Madrid. Her lecture is titled: "How Malleable is Autism? Outcomes studies from the youngest children with ASD".
At the Madrid conference Dr Rogers will also share brand new findings from several papers that are now in review. One of these studies concerns data of six to twelve months old infants who are at high risk of autism spectrum disorder and very symptomatic. This study to be presented at the ESCAP conference was completely carried out by parents, concerning their very young infants – the result of which Rogers calls “very promising”.Rogers hopes to organize special symposia in the periphery of ESCAP 2015, to share her ESDM approach with others. Together with Dr Geraldine – Geri – Dawson, Rogers developed ESDM, a model that has now proven to be both spectacularly effective and practical. Most parents could use the approach with training and ongoing support from interventionists. How could a developmental approach ever be this effective in a genetic disorder? The Sally Rogers interview.
Dr Rogers: “Autism is a disorder with a great deal of very complicated genetic influence. There are genetic influences in many developmental patterns. But that’s only part of the picture. Additionally there are a lot of other influences. We know that experience also carries a strong role in child development. Maybe not regardless of genetic influences but beside these, developmental treatment can do a lot. Even in disorders with the strongest single gene influences, like Down syndrome, we know that environmental differences early in life will make considerable differences in outcomes of children.”
Capitalizing on learning strengths
“Children are magnificent learners. And with environmental exposures and learning opportunities, they learn. Even if the genetic disorder is there. I think the evidence from early intervention literature is quite clear about children with very significant developmental risk factors. We are not particularly focused on minimizing the symptoms in our work – I really think of it as building. Building cognitive and linguistic capacity, capitalizing on the learning strengths of the infants in responsive environments.”
Focusing on improving participation
“Developmental psychology and the understanding of how infants learn, including all the learning opportunities embedded in routines of everyday life and the responsiveness of adults working with children, all these things together can contribute enormously to quality of life. We are trying to maximize the learning potential of these young children and build pathways that may have been influenced by autism genetics. Those affected pathways are not necessarily unavailable to the infant; we may not have to detour around them in our intervention models. Many people use a compensatory model to describe what is happening in early intervention. I am not sure if that is the right model to understand the process of early intervention. We may not be developing compensatory strategies; we may be strengthening the original developmental pathways that support language and interaction, that perhaps are inhibited in some way or became less responsive by the genetic influences. You should note that I am not trying to eliminate autism spectrum disorder – I am focused on improving quality of life, abilities, improving participation.”
“Different publications on intensive interventions show large changes in intellectual capacity that result from the best interventions. Some people tend to minimize those and say the progress is only IQ points-so-what?… But those IQ points reflect intellectual disorders. If you look at group of children that begin an intervention with a mean IQ of 66, with two thirds to three quarters of those children having all of the symptoms of an intellectual disorder at the start of the intervention – and yet two years later the majority of these children no longer fit the criteria of their former disorder – have no intellectual delays, have language abilities similar to their peers , to me this a profound change. The randomized controlled evidence suggests here that our specific treatment is resulting in that. The Dawson 2010 paper is clear on this. In the kinds of changes that occurred in the randomized group that received ESDM, compared to children who also got quite a bit of intervention of another kind. Take the language development for example: almost every child in the 2010 study was non-verbal at the beginning of the treatment. And by the end of the treatment, 90% are verbal, and for well over half of those children, their language deficits are so minimal that they are not even diagnosable. These are profound differences that show that cognitive and linguistic performance in early childhood ASD is very responsive to early intervention. Furthermore, numerous studies have demonstrated that preschool IQ scores and language abilities predicts to long-term outcomes, not just in autism but in other developmental disorders, and also in typical development of many children that don’t have autism, but have that level of delay as toddlers and pre-schoolers.”
So much can be done
“On one hand I feel sad about adults with ASD who grew up without any help or interventions, often away from parents and family. You wonder what that person could have been able to participate in if they could have received what children receive now, how else their lives could have gone. But on the other hand I have worked with lots of adults with ASD and they still are very good learners and there is still quite a bit we can do if they are lacking a quality of life that is rewarding for them: quality of life, participation in activities they enjoy, time with people they care about, worthwhile work, the things that make life good… There is still so much that can be done – I find this part of ASD work exciting. These are aspects of life that matter for all persons with ASD, at all ages. We can help to bring about tremendous changes in the lives of those who are isolated and without meaningful activities or relationships. Both children and adults with autism spectrum disorder are very responsive to high quality interventions and learning opportunities. Paper after paper show significant changes in a very wide range of skills and behaviour in persons with ASD of all ages and with all degrees of impairment with very carefully carried out short-term interventions.”
Hope for differentiated picture of early trajectories
Dr Rogers did not give up on genetic research to find treatment solutions: “There are so many more or less genetically based variables involved in so many different types of autism that we should really look at individuals to understand the mechanisms in which that person’s development is being affected. In terms of understanding early developmental patterns and early trajectories towards outcomes, I am hoping for the next decade of research to give us a much more differentiated picture of early trajectories and where those may go. Right now we are approaching all of autism through a single intervention. We don’t know enough about different patterns of ASD early on to be able to describe specific treatments for one subgroup or another. Cancer is a good example of where we would like to be with autism: they can tell it is this specific kind of cancer, which enables them to develop targeted treatment of choice for this particular person’s cancer. In that respect for autism behavioural interventions, we are in the dark ages. We see that our interventions for some children have a very strong response and for other children much less – they progress but at much slower rates. We don’t know why that is and we don’t know how to predict that at the start. An important goal is to develop a much more individualized approach to treatment. We want to be better at helping those children who have the slowest rates of progress.”
“Knowing that there are powerful intervention effects at a group level motivates us to understand individual differences and to move into studying these. It already would be helpful to start to identify different sub-groups so that we can start to differentiate our interventions. I think the work of Connie Kasari is very important. She is using designs to isolate different responders and then she starts carefully controlling changing in interventions to meet the needs of different types of responders. That is where science is going to go next in behavioural interventions, and that is going to be very helpful.”
The power of parents
For all the achievements that were made in the United States in autism research – genetic, developmental and neurologically – and the development of broadly adapted guidelines for diagnostics and treatment, Dr Rogers not only gives credits to the medical community. “You have to look at the advocacy of American parents and the power of parents to bring great attention to the problems of autism and to press for better solutions. I am sure all this was partly fuelled by the response to treatment. When we started to show parents that effective treatment is possible, the optimism motivated and mobilized them. The combination of medical science and parent advocacy in an environment and culture that puts a lot of emphasis and money into health treatment, that is the perfect storm for creating what we have now.”
Also, to reduce the costs of treatment, a lot of work has been done in empowering parents to execute training modules. Rogers: “We have been discussing one-on-one treatment by a trained professional: this is expensive, but there is nothing magical about it. People learn to use a model and they carry it out. We have demonstrated in a number of studies that parents quickly can learn the exact same techniques and carry them out on the exact same level as trained therapists. And this is just one example of how we should start moving into new delivery systems. Now that we know what is possible, we can start to look at other models of intervention, like using group pre-schools, doing more with parents and asking ourselves what are the ranges of delivery systems that can achieve excellent outcomes. This is the direction we should be going with science and treatment. Again I see a parallel with cancer here: early cancer treatments were far more expensive than they are now. Once the science has been carried out, the drugs are no longer experimental and the interventions are now mainstream. Then costs come down and the interventions become the clinical standard of care. We need to let go of the idea that only so many hours of one-on-one treatment can achieve best outcomes in autism. Our question is: what else can improve outcomes? And we need to deal with the economics of it. I am sure that supporting best outcomes in autism is an economicv as well as a human rights goal to society and it may not take that as many dollars to achieve these outcomes large scale as it has at the experimental level.”
Parents also seem to be an important source of practical knowledge to Dr Rogers and her team: “I have learned practically everything that I know about autism from parents. From children and parents. Not from my mentors. There wasn’t much autism going on when I was learning. But of course, this is true in all of psychiatry and psychology: we learn from our clients.”
“Treatment guidelines are critical for everyday practice. The guidelines have focused physicians on earlier identification. This has led to the identification of many more children with ASD, so the prevalence of autism and the size of the problem has become clarified.”
Outside the US, autism researchers maintain a close international cooperation and exchange of knowledge. Dr Rogers thinks they have a lot to exchange and notices a great congruence in findings between US, Canadian and European studies on autism. “It feels as there is one large American-European community studying treatment and development and early onset in autism. We meet regularly at conferences, we know each others’ work, we replicate and we are using each others’ tools, we seek and provide consultation and guidance across the group…”
According to Rogers, the economic component was surely an important part of the success of autism research and treatment in the USA: “One of the motivators that carries a lot of weight here is the cost of doing nothing versus the cost of doing something. We have had these cost estimates available for the last ten years or so, demonstrating the cost to society of untreated autism. We currently have a new paper by David Mandell showing that with children in ESDM treatment at the age of twelve, the benefits already started to outweigh the cost of treatment. That is a lot earlier than many assume, because these intensive costs concentrate on only a short period of treatment during the early years of life. That kind of economic evidence is very important. And it may even speak more to a European audience than it does to Americans because Europeans provide much more for adults with disabilities.”
Read the abstract: "How malleable is autism? Outcome studies from the youngest children with ASD" (Madrid, 2015).