Dr. Mandell: I was trained in public health with a broad interest in children’s psychopathology and improving mental health out-comes for kids. I did an internship for the city of Philadelphia in 1998, during which time I was asked to look at their very expensive children—those who were using the most mental health services. I found that about half of the hundred most expensive kids in the city were kids with autism. Since then, I have become an advocate for and a researcher on improving quality of care for people with autism in community settings.
CCPR: What’s your view on the prognosis for autism? We sometimes have parents say to us: “Is my child doomed forever?” How do you answer this?
Dr. Mandell: First let me preface this by saying I am not a clinician—I am a psychiatric epidemiologist and health services researcher. But I do talk to a lot of families about this. The prognosis of autism is still a mystery and the best predictors we have of prognosis are the same things that are predictors for kids in general. So the higher your I.Q. when you are a little kid, for example, the better your prognosis is. We are starting to get a sense that reciprocal engagement and joint attention seem to be important predictors of a positive long-term trajectory. But the reality is that these are averages, and I think our predictive models of how children with autism are going to fare over time are still really poor.
CCPR: Why do you think this is?
Dr. Mandell: I think it is the failure of the science at this point. and, increasingly, people in the field talk about autisms rather than autism, with the idea that autism might be as heterogeneous as intellectual disability. There are thousands of different causes of intellectual disability, and I think we will find that it is the same thing with autism. We just don’t know how to measure differences among these types at a behavioral level. The autism diagnostic measures have the highest reliability of any of the measures of disorder in childhood psychopathology, but they were designed to be diagnostic measures; they were not designed to quantify children’s autism in different domains. We are not good at measuring in a quantitative or dimensional way how children are doing, especially socially, and also in pragmatic communication, which I think is the real communication challenge kids with autism face. We have a big measurement issue and, in fact, we are not even sure we are measuring the right things. So it becomes very difficult to figure out what predicts long-term outcomes for kids with autism. I do tell families that the earlier they can get their kids into intervention, and the more intensive that intervention, the better the outcomes for their kids are going to be.
CCPR: What are the strategies that have an evidence base for working for autism?
Dr. Mandell: It depends what you are trying to address. We know that for most of the behavioral challenges and the specific core symptoms of autism the most effective interventions are those in the family of applied behavioral analysis. We used to think of that as meaning very didactic, intensive intervention led by a therapist where the kid is sitting at a table for many hours a day. While that component is still an important part of intervention, one of the exciting things that has happened over the last two decades is the understanding that you can weave these principles of applied behavioral analysis and learning theory into many aspects of the child’s day in a way that is child-directed and pervades the normal activities in which the child would engage. There has become an increased interest in these more developmental approaches to treating kids with autism—techniques that originate out of the Floortime model that Stanley Greenspan developed and popularized (www.stanleygreenspan.com/).
CCPR: What are the overarching principles of these approaches?
Dr. Mandell: Probably the most successful interventions are those that find a way to engage the child in some activity that is reinforcing in and of itself, and use that engagement paired with learning theory to both teach new skills and to make the child want to engage socially. In pivotal response treatment (PRT), they talk about setting up challenges that require a requesting behavior from the child, for example. Greenspan talks about being playfully obstructive in Floortime, which, of course, has the same effect. These two styles of intervention come from very different places, but in practice end up looking very similar. I think one of the reasons why people have been instinctively less interested in computer programs that use the teaching method known as discrete trial training is that they don’t involve the interpersonal engagement that makes up a really important part of the successful interventions.
CCPR: Do you think that is why inclusion may be more useful for kids with autism than autism-specific training or schooling?
Dr. Mandell: Inclusion for kids with autism is important for two reasons. The first is that one of the challenges kids with autism face is an inability to engage socially, so it is by interacting with their peers that they are going to learn how to do it. We are learning that peers can be a really critical part of the intervention process, and that even at a very young age they can be trained to engage the child with autism and create a peer network for that child (Kasari C & Patterson S, Curr Psychiatry Rep 2012;14(6):713-725). The second reason that inclusion is important is a much more pessimistic one: despite our best intentions, we have a history in mental health treatment and in education that whenever we move to a more segregated environment, on average, that environment deteriorates over time.
CCPR: What factors make inclusion work well?
Dr. Mandell: The environment is so important. For instance, Connie Kasari’s recent work shows that if you train three typically developing peers to be sensitive to the needs of kids with autism on the playground, you can dramatically change the extent to which these kids are included in playground activities, participate in structured games with their peers, and are nominated as friends by their classmates (Kasari C et al, J Child Psychol Psychiatry 2012;53(4):431-439).
CCPR: What are some of the greatest challenges for families in getting these evidence-based interventions for their children?
Dr. Mandell: Unless families are located near the site where the intervention was developed, it is very hard to find someone who knows how to do that intervention well in their own communities. We tend to believe as researchers that we are going to develop interventions and make them available to all people. But there is a lot of cost associated with making a change among community clinicians, and by the time they make the change the next best intervention may have come along. Also, they may already be doing something that they are very comfortable with and don’t want to change. We don’t have a payment system that incentivizes the use of evidence-based interventions, either. I think, as a way around this, a lot of intervention developers have started what we might think of as direct-to-consumer marketing. There are a lot more that are parent-mediated, where the parents themselves can learn the intervention, such as Brooke Ingersoll’s reciprocal imitation training (Wainer AL et al, J Autism Dev Disord 2013;43(1):11-24). But that is quite a commitment on the part of the parent.
CCPR: What else makes having a child with autism so challenging for families?
Dr. Mandell: We have used a number of different data sets that include kids with autism to quantify the burden to various systems, including the family system. We have found, for example, that families of children with autism, on average and controlling for a lot of other variables, have a 21 percent lower family income than families of children without autism. That seems to come primarily from mothers leaving the work force (Cidav Z et al, Pediatrics 2012;129(4):617-623). So there is a huge economic toll, and we think it really speaks to the need to develop economic policies for the workplace that allow families more flexibility in working and caring for their children. In addition, we need policies defining who the payer should be for autism services.
CCPR: Who do you think the payer should be?
Dr. Mandell: There is a lot of finger pointing between the healthcare system and the education system about whether these are educational needs or healthcare needs. I think we need to stop thinking of these as kids belonging to the healthcare system or kids belonging to the educational system, and think about them as our kids, who need society to provide appropriate care for them across systems. We need to improve outcomes for kids and for families as well.
CCPR: What can we as psychiatrists know and do to help families?
Dr. Mandell: It really in many ways depends on the family. Some families have a lot of resources: financial, emotional, informational. But some families don’t have the education and awareness about what their rights are and what they can access for their child. Having supports and advocates who attend IEP meetings and treatment plan meetings is one of the most critical, yet overlooked, components of support we can provide for families. Respite care is another really important resource. We have found that when you give families respite care [ie, short-term help], the risk of psychiatric hospitalization for children goes way down, as does the risk of polypharmacy (Mandell DS et al, Arch Pediatr Adolesc Med 2012;166(1):68-73).
CCPR: Do you think hospitalization itself is effective?
Dr. Mandell: It depends on what your goal is. If your goal is to offer respite to the family then, absolutely, hospitalization can be very effective. But respite care is probably a better strategy for that. hospitalization can be great when the kid is responsive to medications and you need to dramatically revamp medication; for example, you can give a kid a med holiday in a protective setting and rethink the medication regimen. Some kids with autism are self-injurious or aggressive, and a hospitalization may be indicated to get through an aggressive or self-injurious period or to consider treatments. There are also some very intensive behavioral interventions that can be implemented in an inpatient setting to get rid of harmful behaviors. But hospitalization is not a treatment. A hospital is a place, and so I think the question is: what are you going to do in that place? And there are a lot of good things that you can do that stabilize the child and address the skills or specific unwanted behaviors to prepare that child for reentry into the community.
Successful interventions are those that find a way to engage the child in some activity that is reinforcing in and of itself.
~ David Mandell, ScD
CCPR: Is there anything else you would like to add?
Dr. Mandell: I think that there has been such a focus on specific types of services when we think about treatment plans and education plans for kids with autism. There is a focus on speech or occupational therapy, the number of hours of service, where the service is going to take place. One of the very exciting things about the reauthorization of the Individuals with Disabilities Education Act (IDEA) was the new language that requires a focus on best practices and outcomes. And what I tell families when they are trying to put together a plan for their child is to forget the services part or the place part, and focus on what they want for their child. What specific changes do they want to see? And let’s work backwards from those changes.
CCPR: Start with the destination and then take the road that leads there.
Dr. Mandell: Exactly.
CCPR: Thank you, Dr. Mandell.