A Fellow of the American Academy of Pediatrics. Dr. Steven Merahn attended the Albert Einstein College of Medicine in the Bronx and finished his pediatric training at the Bronx Municipal Hospital Center at Montefiore Medical Center. Besides being an expert on autism, he is currently serving as the advisor to UNIFI Autism Care.
Hospital & Healthcare Management recently caught up with him and had a very detailed discussion on autism and all things that exist in its spectrum.
We’re really keen to know about the existing autism diagnosis in the US.
Dr. Merahn: So you know, the American Psychiatric Association has a set of criteria that is published in something called the Diagnostic and Statistical Manual. It’s currently the 5th version of that manual over the years. The diagnostic criteria for autism have changed.
With the last version of the DSM 5, they took a number of diagnoses that were peripheral or related to the autism diagnosis and combined them all together into a single diagnosis that they called autism spectrum disorder. And they did this because they realized there are so many characteristics of other conditions. Pervasive developmental disorder, what was called Asperger’s syndrome, was all part of this overall syndrome. The phenotype, the way it expresses itself in the world, is very variable. and there is a tremendous spectrum that is grounded in a set of diagnostic criteria. Those criteria include three things. Number one. It has to present and begin in childhood. That’s a foundational element. Other core criteria include persistent deficits in social communication relationships and interactions, other is restrictive or repetitive patterns of behavior, interests, or activities. Now, again, this is extremely variable. It could be as simple as “I love trains,” or at the other end, it could be very disruptive patterns of self-injury. So again, the spectrum of that particular behavioral criteria is very wide.
However, over the years, it’s been very clear that there are other conditions associated with autistic individuals that seem to be common patterns of reoccurrence, and those are variously called co-occurring conditions. Now, they’re not part of the autism diagnosis. But, once someone is diagnosed with autism, these conditions are extremely common. In that population, there are seizures, sleep disorders, sensory deficits, gastrointestinal conditions, metabolic problems, hormone problems, as well as various kinds of peripheral or related mental health conditions like attention deficit disorder. Again, those are not part of the diagnostic criteria, but they are part of what we would now continue to call the autism spectrum. What I’m hoping to get into is some of the latest evidence in the genomic realm that actually supports the idea that autism is far more than just a neuropsychological condition. There’s not just an autistic brain, but there’s an autistic person.
The more we can look at the autistic person as an entity, the more we can realize that, in many ways, autism is not necessarily a disability. But there are autism-related disabilities because of this spectrum, due to the diversity of what autism can be in a population. And one of the things that we’re doing really differently at UNIFI is instead of just treating the diagnosis-related symptoms of behavior – the behavioral stuff, the neuropsychological side – we’re also looking at how some of these co-occurring conditions can actually benefit from behavioral intervention. It’s been well established that most health outcomes really are dependent on behavior and environment. And only 10% to 20% are responsive to medical care. So, we want to expand our view of the support we can provide the autistic community by not just focusing on the diagnosis but focusing on the whole person.
So, what are the treatments that are available in the US as of now when you talk about the discovery of the behavioral patterns?
Dr. Merahn: Well, the therapeutic anchor for most people with autism is a form of therapy based on the principles of behavior analysis, variously called applied behavior analysis, or ABA. I’ve dug into this a little bit deeply. I’m fairly deeply involved in the behavior analytic community and have come to understand that the science of behavior analysis actually has applications outside of autism.
But over the last 20 years in the States, every State of the Union has passed legislative reform mandating access to therapy based on behavior analysis for children with autism. Now, that started slow In 2 000 to 2001, it was only a handful of states, and over the years it’s grown to the point where I think the last state was just 2 or 3 years ago that again mandated insurance companies and other payers to pay for access to this therapy.
There are other forms of therapy that are important for children with autism. The fact of the matter is, as we look at autism as a whole-person condition, we have to acknowledge that there are other ways that children with autism can get the support they need, even including psychotherapy. I mean, the kind of thing that we may have for our own mental health can really benefit children with autism. The anchor for getting children the best outcomes really is grounded in a very carefully crafted behavior-analytic treatment plan.
A lot of people ask, when should we start medical treatment?
Dr. Merahn: Great question. Well, the good news is that the studies are very clear that the earlier you intervene, the better the life course and outcome for a child. There’s no doubt about that.
The problem is that there’s a lot of delay in getting the diagnosis. So, if you start a child at age two through four, the chances of them going into the school system requiring fewer services and supports are very, very high. It also, by the way, stabilizes the family relationships with siblings and the ability to live in the community. There are all sorts of benefits to early intervention.
However, having said that, I work right now with an adult population with autism. I’m the medical director for an organization in New York State that cares for adults with intellectual developmental disabilities, many of whom have autism as their primary diagnosis, and it is very clear to me that there are applications of behavior analysis that can significantly benefit adults. With young children, we are really focused on supporting their developmental trajectory. In what ways might autism, or in what ways might their autistic symptoms and behavior, be a barrier to developmental progress? We want to remove the barrier and then support their strength development. That’s what we do in childhood. In the teen years, for example, there’s a big challenge for autistic children when they make the transition from elementary school to what we call in the States middle school or junior high. And it’s around the early teenage years, i.e., 12, 13, 14. There are tremendous social challenges during that time for autistic children who may be very, very stable in the elementary school realm, where it’s the same class and the same teacher. It’s a relatively controlled and consistent environment all of a sudden, you’re now in an environment where you’re changing classes. And there’s different friend groups. The social challenges are different. So we want to intervene there around social skills. As people make the transition to adulthood, we want them to have as independent a life as possible.
There is a subset of children who have what is variously referred to as profound autism. They may be nonverbal; they may have severe challenging behaviors. Even in those children, there’s a significant opportunity to again reduce the behaviors that are challenging in order to give them the maximum opportunity to interact and have positive interactions in the world. So, as a pediatrician, remember, I’m not a behavior analyst, and I have no reason to promote this therapy, except that I’ve looked at the science.
I really do believe that there’s a benefit in some way for people to receive behavior analysis when there are behaviors that are interfering, or behaviors that can benefit from their health, related behaviors, their mental health conditions, or their interactions with the environment.
We have been seeing people suffering from this condition for a long time, but what we are observing now is that suddenly there is a big surge in the kind of treatments that are going on. But is it too little, too late?
Dr. Merahn: I don’t think so. I think one of the things that’s happened over the years is that we’ve gotten better at understanding the specifics of people’s conditions. For a very long time, we kind of lumped everybody together under this umbrella of intellectual and developmental disability. You have a problem in childhood, whether it’s learning disabilities, challenging behavior, or oppositional. Whatever the challenges happen to be, everybody got lumped into this single diagnosis, and over the years, we’ve gotten better at parsing out the specific person-centered characteristics that have allowed us to really develop better person-centered therapies. I think that there is absolutely a population of both older children and adults who may not have gotten the therapy early in life, but that doesn’t mean that they don’t deserve an opportunity for therapeutic intervention later in life.
How does UNIFI Autism Care offer therapy from a whole-person condition standpoint?
Dr. Merahn: UNIFI is unique, and the fact is that there are very few, and I mean handfuls, of the thousands of behavior services providers in the States who have a pediatrician that’s part of the team, and I’m, I will say, grateful to my behavior analytical colleagues for allowing me to embrace my perspective on children. Healthcare, unfortunately, is sometimes very siloed. Disciplinary silos are driving a lot of what happens in healthcare. So what we’re doing is saying, okay, the child may have another diagnosis, related symptoms of behavior that need an intervention.
But if the child has epilepsy and there’s a problem with them taking the seizure medicine, we want to address that issue as well.
Children with autism use the emergency room four times more than non-autistic children. They’re admitted to the hospital more frequently, and many of those are preventable, and that can happen through behavioral interventions because there’s a foundation of behavior in the reason. So again, if you don’t take your medicine, you’re going to break through in whatever the condition is, whether it’s asthma or seizures. Children with autism often have gastrointestinal problems or sleep disorders that can be very disruptive to their own well-being, but also the well-being of their family. So we’re not restricting our perspective on that child, just to the autistic-related symptoms and behavior. We are taking a much broader perspective on that child, and our view of outcomes is less about their response to treatment in any given treatment cycle, but really about how and what we’re doing today can affect their life course trajectory into adulthood because we know that autism doesn’t go away at age 21. Even though in many states right now the access to behavior analytic therapy ends at age 21, and adults don’t necessarily have the same access that children do.
But our focus is- Where is this child going in adulthood? How independent, and how much, by the way, can we make them comfortable with themselves? You know, I say often that an autistic person’s perspective on the world is normative for them.
And we have to stop trying to shape behavior to meet some external perspective of what normative is because we want people to be comfortable with themselves and make a contribution to the world. There’s a great quote from Temple Grandin, who’s a very famous autistic author and speaker, and she says if we took all the autistics out of the world, you’d have a bunch of people standing around talking to each other, but nothing would get done. So there’s a real sense of the contribution that the autistic perspective can make to society and community. And we want to keep that perspective alive in many ways. It’s a unique perspective that can make a contribution, because autistic people might look at the world a little differently than other people do, as, by the way, in my perspective, we all do to a certain extent.
That’s a great observation. But then, if I have to add, when we discuss an autistic child, it’s not the child who is changing; it’s the entire family; people who are associated with his well-being are also getting affected. So how does UNIFI emphasize creating an integrated approach?
Dr. Merahn: Again, part of our view of the children is the environment in which they live. So we actually have a commitment to doing tremendous family involvement in our therapeutic process. Families are actually engaged in the therapeutic process so that the children aren’t just in therapy when they’re with one of our behavior analysts.
The therapeutic techniques can be applied in the family even when we’re not there, you can call it parent training. But it’s really family involvement. We look at family interactions significantly. Siblings play a really important role, both in terms of the effect of having an autistic sibling on that person’s own development and the effect of an autistic sibling on the way their parents interact with them. And again, we try to neutralize the disability component of this and help people accept and commit to who their family members are.
What are the current research projects that UNIFI is into, and what are the outcomes? If you can share that, please.
Dr. Merahn: So, there are two things we’re working on, and we’re not ready on the outcome side. The way we collect data is a little bit different. So we’re actually looking at health-related social determinants that can have a behavioral component. We’re looking at medication management. We’re actually tracking chronic illnesses, and we’re asking for some of our help from the payers that pay for services. We’re asking them to share with us data on utilization patterns for healthcare. How many specialists do they go to? How many times have they been to the emergency room? How many times have they been hospitalized? We really want to be able to have an influence on some of that. That’s where, again, in the States, what we call value-based care is coming in.
And I just want to talk about this briefly: there’s a tremendous amount of genomic research going on in children with autism, and it actually reinforces this view of autism as a whole child condition. There’s about a hundred genes that have been identified and associated with the autistic community. The problem is, there’s no single pattern among them. If there are patterns, it’s around one. It’s so diverse, and some of the genomic clusters show a disconnection between the diagnostic symptoms. So there’s a set of genes that are associated with the repetitive behavior patterns, and there’s a set of genes that are associated with social communication problems.
Now Is there therapy in that yet? No. But what it says to us at UNIFI is we’re on the right track in terms of looking at the really doing person-centered, child-centered planning because each child is in many ways genetically unique, and therefore, the symptoms and behavior and autism related co-occurring conditions will be unique.
Many times, we have heard a lot of parents saying that we have observed a tremendous change in the child, and they thought that the child was moving in the right direction, but suddenly there was a behavioral change.
Dr. Merahn: There’s almost predictable change that occurs at various developmental phases. And whether you’re an autistic child or a non-autistic child, those things are going to happen. There’s changes in behavior and changes in responsiveness, along with changes related to puberty. These changes occur all the time. For many families of an autistic child, stability becomes critically important. But you can’t discount the fact that these children are still going through what are in many ways normative developmental changes, which will change the way they respond to things, their sensory issues, and their own patterns of communication. A lot of times, that happens with behavior analysis. I will say that sometimes there’s patterns of behavior that have come up through families that they’ve chosen to do in order to maintain a level of stability.
Sometimes, we have to undo some of those because they are not. They’re designed to help the family be stable, but they’re not necessarily right for the child’s developmental progress.
So for example, if the child has severe food preferences and you’re always going with their food preferences, which, by the way, is not a bad thing to do, but in some cases, if you overdo it, then you never have the opportunity to introduce new things, that level of variation into their lives. So sometimes, we have to pull away some of those things that families have done for stability. And there’s often a response to that which looks like things are getting worse, but they’re not really because we’re going to ride that wave into another opportunity for that child.
