“In 10 years, we’re going to have a paradigm shift in our field of autism towards a more relational, neurobiological, and biopsychosocial perspective.” – Dr. Gerry Costa
I sat down with Dr. Gerard Costa, Director of the Center for Autism & Early Childhood Mental Health to discuss the relationship between autism research and science. Costa believes that science, although often taken as an indisputable truth, is actually influenced by our understanding of human development. Findings perceived as “facts” through scientific data are in reality perceived edicts that need questioning and restructuring that follow advances in multi-disciplinary study.
For years, according to Costa, autism was erroneously labeled a disorder of behavior rather than a difference in the structure, functioning, and processing of the human brain. Early data and analysis resulted in organizational claims that autism could be “treated” with behavioral techniques that ignored some of the hard-wired differences of the autistic brain.
Advances in brain imaging have allowed us to learn more about what is happening structurally inside the brain and to understand overall brain functionality. Multi-disciplinary sciences are now capable of providing a much broader analysis than ever before, resulting in counter arguments to perceived behavioral directives. Ideas such as “neurodiversity” need to be considered if we are to make advances in autism understanding.
What exactly is normalized behavior? Costa asks us to examine the question while worrying less about complying to the ideas of normalcy and more about what is happening inside the brain. Costa already sees paradigms shifting as science and research have begun merging with interrelated disciplines.
Whether it’s through unbundling efforts or other means, one thing remains constant – the autism community is clamoring for easily understood research findings that can be applied to their everyday struggles.
Rod Berger: Well Gerry, I think that what we’re going to be talking about is a very serious and important subject, but it will be fun to break it down together. One, we’re part of the same eyeglass club so that’s a good start to our discussion. Looking at your background – and people can learn more below our interview here – you have been working very intensely with folks with special needs. I want to bring up a quote from a book that’s coming out with Mark Claypool and John McLaughlin. You said, “We have to be honest enough with ourselves in recognizing that the act of science is not simply an academic or high moral inquiry.”
There’s a deep meaning in those small amount of words paired together. Can you unbundle that? And when I say unbundle I’m being very intentional, because when we were talking about special needs – autism specifically – we’re now talking about ways to unbundle it. How do we look at this in a different way where we incorporate more of the community that surrounds the child and family, working with them from a resource, service and academic standpoint.
So, tell me a little bit about that quote and your view from an unbundling perspective.
Gerard Costa: Sure, Rod. The notion of scientific inquiry is so critical. I think many students in multidisciplinary fields, allied health fields and certainly mental health – this includes pediatrics, it includes occupational therapy, and it certainly includes educators – mistakenly believe that science is about an accumulation of facts that have been established through some kind of study. They believe that the items which were measured in the study have been given some quantified value and are regarded as factoids, making them indisputable.
The fact of the matter is, what we choose to look at and what we choose to measure is determined by our understanding of human development. I often say to my students, “Did you just see that ultraviolet light pass you by?” or, “Did you just hear that high frequency sound?” Of course they don’t. It’s important to tell them, “Well the fact that you can’t visually measure them right now doesn’t mean they’re non-existent.”
Science isn’t about looking at things and measuring them, then presenting them as if they are the only things to measure and that they are indisputably there. I take great issue particularly in the field of autism because I think autism is erroneously regarded as a disorder of behavior rather than a difference in the structure, functioning and processing of the human brain. Over the past 30 years, the kinds of instrumentation and imaging that have been developed has allowed us to look deeper, more deeply into the brain, and structure the functioning of those given this diagnosis. We’re learning much more about what is going on inside of them so that the observable behavior is in fact the backend of a whole bunch of front end processes.
In 2013, Dr. Thomas Insel, the director of the National Institute for Mental Health, issued a real criticism of Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) by saying it’s unfortunate that experts remain focused developing a description of autism, when in fact we know so much more about brain systems underlying the behavior. In the future, we need to look at this more carefully, and that’s just one example.
I think so many people have been led to believe by a large behavioral community that theirs is the only evidence-based approach, that theirs is the only way that families can help their children. What multidisciplinary science is telling us from behavioral, educational, mental health folks, from neurobiological, occupational therapists, physical therapists, speech and language pathologists, is that so much more is going on inside of the person.
Now, I’m focusing on autism but this is true for every child. We need think carefully about what we are looking at – what we define as important. In the case of autism, a person who might be excited, or anxious, or overwhelmed might flap their hands, might move about with a level of arousal and emotional dysregulation. In schools we often hear teachers say, “Quiet hands. Quiet hands.” I’m wondering, why should it matter if an excited child is shaking their hands or moving their head?
RB: Creating a redefinition of normal.
GC: Yes, a redefinition of normal and creating a benchmark by which we determine normality. A much more thoughtful approach is to think about neurodiversity, and how we each have unique characteristics and qualities. Again, that’s not minimizing the understanding that there are many children on the spectrum who really do suffer, who really are overwhelmed by events in the world, by their own bodies, by their own somatic and neurological systems. We should not develop ways that autistic children can comply to norms of movement and action, but that we understand internally what’s going on within them and really become attuned and connected to how we can best help them communicate and engage with us.
RB: Gerry, one of the things I think about is that we are in a society that only pays attention to what makes a personal impact. One of the things that I was challenged with in my previous work – and I’d be curious to hear your perspective – is, how can the scientific community around autism spectrum disorders do a better job of communicating the research and the results in a manner that is more digestible by the general public so that more conversations can be had? Where we actually bridge the gap between, “It doesn’t impact me so it doesn’t matter,” to, “This impacts my community. I need to be aware of this.”
RB: When I was was dealing with this directly, I found that to be a big issue. Just because we had great research, it didn’t mean we had a fundamental understanding of how to communicate the research to the people that needed to digest it in short, consumable bits.
GC: Yes, that’s a wonderful question and a major challenge for those in the field. I have a couple of thoughts on that. We have to recognize that there are existing large and small organizations that consider themselves to be advocates in the field of autism. Autism Speaks is probably the one that’s most widely known. It was originally developed out of an authentic interest, one of founders was a grandparent to an autistic child. The founders, the Wrights, happened to be well funded and able to support the development of a larger, impactful organization. The minute Autism Speaks began to embark on its, now, 10-year journey, they began to define themselves as monitors of scientific evidence behind autism. Unfortunately, that became a contrary to scientific inquiry. An ideological battle to define autism entirely as being treated only through an evidence-based approach.
I think that’s changing now. Last year they embarked on a new strategic plan for the next 5 to 10 years. They are becoming much more aware that there is a broader scientific inquiry out there. That doesn’t mean they weakened their stance on behavioral approach as being the only option. To answer your question, the first thing is I think that these larger organizations, like Autism Speaks or American Study. I think these organizations have to begun to be very reflective and thoughtful about making sure they become well versed in this notion of philosophy of science. That science is not about a collection of facts from one kind of inquiry, but about a context of discovery. We have so many more disciplines that can now give us information about what’s occurring within a person with autism. The first thing we need to do is create a shift in the thinking of these organizations, make them commit to letting families know there’s more than one choice. There are many ways of thinking, many options for therapeutics and educational strategies, not just one. That position is contrary to everything we know in science.
I’m going to take a lesson from a wonderful organization in Canada called the MEHRIT Centre, headed by Dr. Stuart Shanker. Dr. Stuart Shanker has developed a movement in Canada that’s spreading worldwide. In fact, my center at Montclair State University in New Jersey is the first licensed center with the self-reg movement in Canada in the United States.
Dr. Stuart Shanker has developed a wonderful series of 5 to 10 minute videos that speak so simply about the complexity of the human brain and human stress systems. It’s really a self-regulation approach that applies to all individuals, but has particular relevance to those with autism. What we are learning about brain systems, neurodevelopment systems and neurosensory systems is that the person with autism is often beset with high levels of anxiety and heightened stress responses that derails some of their higher level capacities. The first thing we need to do is really address those stress systems.
Dr. Stuart Shanker and his executive director, Dr. Susan Hopkins, have found ways to really convey the complexity of approaching a person in very small, digestible ways. Not from focusing on their behavior and social compliance, but on an internal understanding of their neural stress systems and how that relates to their behavioral and affective approaches and manifestations.
I think that’s the second thing we have to do once we look to widen the tent, not focus on singular approaches. We have to really digest these into more manageable video pods and documents. The self-reg folks have done just that. There’s more I can say, but that’s a good beginning.
RB: Gerry, I like how you talk about widening the tent. How do we establish a baseline when we have a scientific community and parent networks of these campaigns – some which you referenced – but oftentimes, the general public sees that community as being very passionate, right? We see things on the news where the energy is high and the conviction is very strong. That can be off putting to the general public that’s going to help shape policy, practice, research, and funding. It’s almost like we have this great irony that we have the scientific community that struggles to reach these entities, right? All because of the passion and the way that they are communicating to outsiders.
RB: Do you have a similar view or am I missing something?
GC: I’m not cynical and I hope I’m never cynical about this work, but I may sound so in what I’m about to say. I want to be honest with myself and honest with my own past rhetoric. I’ve been strident in my argument against behavioral approaches. I think we all have to check our adherence to being – or just appearing to be – in a camp that is contentious and offensive. That is honestly the statement of what’s happened in our field. I can’t tell you how many times I deeply embraced the model of human development, or the developmental individual difference relationship based approach. That’s a comprehensive biopsychosocial multidisciplinary model held and honored by the organization Dr. Stuart Shanker founded.
I can’t tell you how many times I’ve been told by students who were trained in applied behavioral analysis (ABA) that those students should not be conversing with me and that – we, the DIR-ICDL people, were the ones who now have been saying that autism is caused by parents. That old debunked notion, horrible notion, inaccurate notion, erroneous notion.
I know there have been camps – I think we have been a victim of it in ICDL and I think ICDL is another organization that’s trying to develop a message about broadening the tents and really talking about it.
Here’s what I’m going to say – the cynical part. I’ve been so influenced in my thinking about science by a wonderful book written in the ‘70s initially by Thomas Kuhn, called The Structure of Scientific Revolution. In The Structure of Scientific Revolution, Thomas Kuhn historically traces how scientific thinking has changed over the course of time. He talks about a process in which based on evidence derived from studies within a certain conceptual framework of world view – of a certain paradigm – and that yields or produces which is called dominant paradigm.
Over the course of time, evidence and other perspectives begin to gain strength based on new instrumentation, new rising ideas, and they began to offer alternative explanations. So, there is the prior paradigm offered and then there are findings that the prior paradigm, the dominant paradigm, can’t fully explain. Kuhn says that for a while, the dominant paradigm still functions, even with these findings don’t seem to be explainable by the paradigm. He calls them anomalies.
After a while, those anomalies are set aside as temporary inconveniences while we still benefit from the dominant paradigm. At some point in the history of science, those anomalies begin to accumulate so much that they are crushingly heavy. They break the paradigm and allow for a shift. Sometimes it’s a paradigm revolution where there’s a sudden shift. By the way, in physics, this happened a bit with Einstein’s theory of relativity. It really was able to explain everything. But, new instrumentation, new telescopes, new microscopes are being develop. The nature of the world through the lens of physics was changing.
One of the factors Kuhn talks about, and this is the cynical point, is why do paradigms have a hard time yielding to new information? Why do paradigms continue to persist even when there seems to be an accumulation of other perspectives and other evidence and anomalies? It’s because there’s an economic and political component to the paradigms and I say this just honestly about all science, when science becomes a business, when ABA becomes a guild of people trained in this model who opens schools who’ve invested years in their own training, who have credentials in the field and someone comes along and says, “There’s another way,” there’s resistance. It’s not only ideological resistance. I think that there’s geographical, political, ideological and economic differences that merge.
My thinking behind why we can’t broaden the tent is that it’s a more complex thing than ideology. It’s a more complex thing than just scientific inquiry. We have to acknowledge that if we’re going to open up the field to new ways of therapeutics, new ways of conceptualizing autism, new ways based on all that we’ve learned in these multidisciplinary sciences – particularly neurodevelopment – that we’re going to have to recognize that we have less of a guilt mentality, less of the economic protection mentality and we have to all engage in some kind of transformative development of our own organizations.
We have to begin to retool people in the ways we currently think so that they feel vital and useful. A big part of our center here at Montclair State is to try to retool folks in the ways of thinking about autism that certainly doesn’t dispute the value of Applied Behavioral Analysis (ABA). No one will dispute the value of ABA. ABA is a principle or concepts based on learning theory that authentically demonstrated behavior can change as a result of consequences than prompting and mending. No one disputes that. But, autism is not just that. We need to recognize other ways to think about internal life.
RB: So, the message, Gerry, and the irony, is that we struggle to understand that we can’t just be on one side of the room. I remember in the early 2000s working in mental health, you would be in the lounge of a clinic and it was exactly what you’re talking about. You join your associations. You saw your patients and clients and you went about your business. Yet, it doesn’t seem obvious what you’re saying. That we’re not moving as quickly as maybe we could. Am I wrong to say that that impacts policy funding and all these other things as we continue to fight internally about whose message is better or stronger and more applicable?
GC: Oh, absolutely. In fact, New Jersey has passed legislation about autism insurance reimbursements that have caught a fight in the legislation, the use of ABA, applied behavioral analysis.
In New Jersey in 2009, I sat before the senate budget committee that has to do the final pass-through of any legislation and testified, along with several colleagues, against the idea that they should include on methodology in the legislation. I argued to them that that was tantamount to saying that for an oncologist, they could use radiation but not use chemotherapy – that that’s the business of the scientific field to figure out what are the subclinical approaches.
By the way, I strongly believe in evidence. Evidence-based practice is incredibly important. But, what you choose to measure and how you measure it is really part of your paradigm. It’s defined by your thinking. I grew up in Hoboken, New Jersey in a political climate, I was just a political activist early in my life. I remember hearing a wonderful quote in politics that said, “If you drop a quarter in the middle of the block, you don’t look for it on the corner where the light is better.” You tend to look where you shine your light. If your light doesn’t include an internal inquiry about the reasons for hand flapping or gaze aversion or toe walking or running around, if your inquiry simply has to stop the behavior, I don’t think we do that in almost any other field. We certainly don’t do that in medicine. We don’t treat a symptom only without wondering where it’s coming from, what it means. A headache can be everything from a minor tension headache to a brain tumor. We don’t treat the symptom. We wonder what’s going on. That’s not happening.
Graduate education has really failed a lot of students. I’m so privileged to have gone through an education that helped me know about the philosophy of science. That helped me realize that science is not an indisputable set of facts. It’s a line of inquiry rooted in various paradigms and so even in my own paradigm, which is a much more relational developmental, systemic paradigm, not a mechanistic paradigm about life. I don’t really think it’s just about input-output in life or for any of us.
Even in midst of traditional paradigm, I have my own tunnel vision. I’ve contributed to a book called Evidence-Based Practice in Infant and Early Childhood Psychology. The chapter the preface of developmental disorders. We examined and presented underlying models, both mechanistic and organismic. We were competing for people’s attention in the field of autism.
I think we failed a lot of practitioners. I think there are loads of wonderful ABA folks, behavioral modification folks, who were passionate and dedicated to the field because they were convinced. There’s no other way to look at this stuff. I just think that’s unfair to them. I think that they’ve been sold a bill of goods that say there’s no other way. I think that’s tragic.
What’s wonderful is two groups that have really made change happen, parents and ASD persons. The families have really begun to learn so much about autism and understand that there’s a broader way of thinking about what’s going. For instance, The Autistic Self Advocacy Network. It’s composed of 25% to 30% of children and people on the spectrum who suffer. Who don’t have the verbal capacity or adequate capacity for regulation that allows them to be articulate about what they’re going through.
They’ve been given a voice. They have a way to express what this internal life has been like and they have rejected diagnostic classifications that don’t take the first person account, that don’t take the phenomenological experience of the person himself. Parents and self-advocates have moved the field in a better direction. Three years ago I said, “In 10 years, we’re going to have a paradigm shift in our field of autism towards a more relational, neurobiological, biopsychosocial perspective.” We’re heading in the right direction and I hope the book and these video pods help in spreading the message.
RB: Well, I have to say, Gerry, that it’s nice. I appreciate your point about internal inquiry and that’s what I’ve experienced in our discussion today. You’re very accomplished and you could very easily setup and maintain that stance out of your own self-serving needs. Communicating about the complexities and where you may have strayed and/or how you can include other viewpoints really says a lot about the quality of your work and the value that you bring to those students who I’m sure to enjoy working with you more than you probably know. It’s been a great pleasure, Gerry.
GC: I appreciate that, and I appreciate that people are working hard in the field with different perspectives. They care deeply. I mean no criticism, but I do want to challenge others and express that there are other ways of thinking. I’m grateful that I have a platform to do that. Thanks again, Rod.
About Dr. Gerard Costa
Dr. Gerard Costa is a licensed developmental psychologist and founding director of the Center for Autism and Early Childhood Mental Health at Montclair State University. He holds certificates in the Brazelton Touchpoints model, DIR-C®, and Infant Mental Health. He was a gubernatorial appointment to the New Jersey Council for Young Children; and is Principal Investigator of the New Jersey Autism Center of Excellence (ACE) Coordinating Center at Montclair State University, that oversees more than 20 clinical research sites in New Jersey.
Dr. Costa also heads the New Jersey Initiatives that oversee the Pyramid Model, infant and early childhood mental health professional development, and promote full inclusion. He led statewide multi-year projects on Infant Mental Health in Wyoming and South Dakota. He is a training leader in the DIR approach and is a member of the Board of Directors of ICDL. He oversaw the development and continuing implementation of a statewide infant-child mental health professional development curriculum, “Keeping Babies and Children in Mind.” Dr. Costa has published papers and presented on autism; infant mental health; and professional and human development, throughout the United States and the world.