A pair of Daemen College assistant professors who have studied with some of the top autism experts in the nation have launched a new program at the Amherst school that should help improve autism treatment in the region – and beyond.
“There’s just so much hope in what we do,” said Vicki Madaus Knapp, head of the new Applied Behavior Analysis Program.
Knapp and Vanessa B. Patrone have combined to teach a master’s-level course load that will lead to a new state license in Applied Behavior Analysis, an intensive, evidence-based form of treatment designed to help those with a variety of needs learn to make healthier choices.
The practice has been used to help those with Down syndrome, addiction and dementia, but New York State at this point only allows its use to help treat those with autism.
Knapp, 44, grew up outside Detroit and received her bachelor’s in psychology from Western Michigan University, the first school to offer a behavior analytics degree.
“That’s where I started working with people with autism and fell in love with the possibility that these children could learn and grow and become more independent, not need as much help, and potentially live on their own,” Knapp said. She got her master’s at Eastern Michigan University and doctorate from the University of Kansas, also top programs in the specialty. She and her husband, Steve Knapp, a geologist with National Fuel, live in East Amherst with their daughters, Ava, 17, and Vivian, 12, and an 11-year-old Golden retriever Matilda.
Patrone, 40, an Olean native and SUNY Geneseo State graduate, received her master’s of Applied Behavior Analysis from the University of Maryland, Baltimore County, where she was mentored by Harvard-educated Charles Catania, a former student of famed psychologist B.F. Skinner, who developed behavior analysis. She and her husband, Dennis, who still works through telecommuting in the applied physics lab at Johns Hopkins, live in the Elmwood Village with their daughters, Elizabeth, 11, and Evelyn, 9.
The pair both found their way to Erie County more than a decade ago. They worked at agencies that help treat those with autism before the current college school year began. They now offer Daemen’s first slate of courses to eight students seeking the Applied Behavior Analysis license certificate. Those interested in pursuing the license come fall can visit daemen.edu/aba.
Q: What is a licensed behavior analyst?
Knapp: Somebody who has met the education requirements and experience to apply for the license. You need 1,500 hours of supervised experience under the supervision of a licensed behavior analyst. It’s almost like and apprenticeship or guided practice model. When the autism insurance mandate went through in New York State in about 2012, the need for behavioral analysis services was evident in that law. The mandate restricts certified behavioral analysts to working only with people with autism. That’s like telling a podiatrist they can only work with a big toe, or physical therapists they can only work with the arms.
Q: If a family suspects a loved one is exhibiting some of the symptoms of autism, who do they call or reach out to?
Knapp: Their physician or licensed psychologist can help if they’re eligible for the diagnosis, then help with a prescription for Applied Behavior Analysis services. We can help point families in the right direction in terms of the agencies and service providers in those areas. Their physicians or psychologists would be able to do that, as well.
Q: What is the best description for autism?
Knapp: There are probably people you interact with every day who may have autism. It's just that their symptoms and characteristics are under control to some extent. On the other end of the spectrum, you have people severely affected, unable to speak, engaging in potentially dangerous, self-injurious or aggressive behaviors.
The Centers for Disease Control and Prevention estimates 1 in 68 children (and 1 in 42 boys) have autism. It's characterized by an individual's limitations in the ability to engage in social communication, as evidenced by having a conversation and engaging in eye contact with another person and engaging in shared materials and shared focus with another person. Also behaviorally, individuals with an autism spectrum disorder diagnosis engage in restrictive and repetitive behavioral movements. It would not be unusual for someone with autism to have a very intense interest in something that perhaps not anyone else would have. They can be very intense, and it can limit their ability to engage in more functional social interactions with other people. This also limits the ability for the individual's ability to engage academic or instructional material with their teachers.
Patrone: There are also strengths associated with people who have autism. As practitioners, we help when there is a deficit. Families or individuals come to us and ask for support in specific areas: I would like to be able to make friends more easily. My son is hurting himself; how can you help? Students with autism memorize a lot of material very easily and can recall it. They tend to be very visual learners, so can recreate almost photographic level memories. Some people choose, and need, treatment and support. Some people don't. Some people who have autism function well and don't choose to seek our help.
Knapp: As behavior analysts who deal with behavior change, we help people overcome whatever limits they have. Historically, behavior analysis isn't just about autism. There's a lot of work with typical individuals. We do recycling programs and seat belt buckling, any kind of area individuals need help with.
Given some early and intensive behavioral intervention with a young child with autism, the literature has shown that some individuals can improve to the level of not necessarily needing further services, and perhaps becoming indistinguishable from their typically developing peers.
Q: In general, are there certain behaviors you and other behavioral specialists tend to deal with most often?
Patrone: We try to reduce any problematic behaviors first, behaviors that may be a threat to a person’s health, safety, well-being, or to those around them. As specialists, we tend to be called in when there’s a more severe case, something parents and teachers can’t handle on their own. ... There’s no cookbook that we use in terms of strategies, however we do a lot of increasing communication skills, functional communication training where we identify for that individual what deficits they have in terms of communication.
Knapp: We specifically look at the individual’s preferences. Whether they’re verbal or non-verbal, there are ways to do that. We work with reinforcement and that’s not just M&Ms. It’s much more. It can be attention, a smile, a break, a toy, a paycheck – all sorts of things. I love this article entitled “Balancing the Right to Habilitation with the Right to Personal Liberties.” One of the lines says we should honor “the rights of people with developmental disabilities to eat too many doughnuts and take a nap.” I think that’s really important when you look at people with autism and other intellectual and developmental disabilities. Yes, we want them to do the best they can do but everybody needs a break. We don’t want to structure everybody so much.
Q: Can you give an example of successful Applied Behavior Analysis?
Patrone: I had a 16-year-old several years ago who said, “I really want a girlfriend.” He had significant difficulty communicating. He spoke in very short sentences. We started working on having conversations, introducing yourself. We identified the skills he needed, and took some time. I didn’t think he needed a girlfriend right then. His mother didn’t, either. But he didn’t have the communication skills to say, “I feel like I’m isolated in my life. I don’t think I have enough social interaction.”
Through working with his family, he told us he wanted to work on his social needs. He had academic needs. He had behavioral needs. But he was telling us he was motivated to reach out with peers for peer interactions, so that’s what we worked on.
Knapp: One of our big, big strengths is taking these goals and breaking them down into smaller pieces.
Patrone: We worked very simply on turn taking in a conversation, I say something, then you say something. On shaking somebody’s hand, but not too long, even if they’re pretty. You can’t just stand there and stare at someone while you’re talking. Frankly, every 16-year-old boy needs a little bit of coaching in this area.
Knapp: We learn what’s necessary through our observation processes and assessment procedures. We do pretty extensive assessments of the individual’s behaviors, preferences, how their behaviors – problematic and not – are functioning in their environment. What there strengths are. What their weaknesses are. Even if they can’t communicate to us, their behavior communicates to us. If they’re seeking a lot of attention, this individual is telling me they need a lot of attention. Let’s teach him how to access that appropriately.
Q: Do you hope the limits on how Applied Behavior Analysis will change?
Knapp: Yes. There is legislation right now. Crystal Peoples-Stokes (D-Buffalo) is a co-sponsor on the Assembly side. We are the only state, the only area internationally, that has this type of restriction (for autism treatment only). We've done some work here at Daemen on these restrictions. Vanessa and I looked at our Journal of Applied Behavioral Analysis, the landmark journal for our field, and looked at the diagnostic criteria and characteristics of participants in studies for about the last decades. We've coded and characterized each of the participants in all of those studies. There were thousands. The biggest category of participants with a diagnosis was people struggling with addictions: with gambling, nicotine, alcohol and drugs.
Patrone: The largest group was people with no diagnosis as all: adults, shoppers, bicycle helmet wearers. Of those with diagnoses, autism was the third-largest category after addiction and intellectual disability. We were floored when we did our analysis.
Knapp: There's literature about using it with those who have dementia, but we can't use it in New York State. We could help tremendously.
Q: Can you teach students about applying techniques in fashions other than autism?
Knapp: All of our syllabi have New York State specific language in them. One of the items I included states that while there is a restriction in the scope of practice in New York State to only working with individuals with autism, Applied Behavior Analysis is a broad field and, should you leave the state and practice somewhere else, you need to know the applicability. The focus of this program is mostly for people with autism spectrum disorders but the things we are teaching – for example, the "Concepts and Principles of Applied Behavior Analysis" course – are pretty universal principles of reinforcement. As a behavioral analyst, I think of this as the way the world works. We behave and engage because of reinforcement from the positive things that we get from engaging in certain kinds of interactions.
Q: What are the causes of autism?
Knapp: We still do not know what causes autism and how severe autism is going to be in an individual.
Patrone: The latest CDC report says some sort of genetic and environmental interaction is the best guess. Some people are predisposed genetically, which is why you see some patterns in terms of diagnosis. But not everyone with those genetic predispositions will develop autism. We don't know why that happens. It's not unusual. Certain genes are activated, others are not, and we don't know why. Variables that have been studied have not been supported by evidence. All we know is there are genetic underpinnings. That's as concrete as we can get as far as interpreting the evidence.
Q: How effective are behavior analysis and other tools? How important is it to start using these tools as early as possible in somebody's life?
Knapp: Unbelievably important to start as early as possible. If you suspect any kinds of symptoms or characteristics … it is important that you speak with your pediatrician as soon as possible. Really intensive intervention can be so effective.
Patrone: The dose right now is about 30 to 40 hours a week.
Knapp: It can be given to somebody as young as 18 to 24 months old.
Patrone: The skills we work on at that early intervention are the readiness skills, what we call precursor skills to other learning. Learning to learn. They're critical skills, like sharing attention with somebody else, being able to get information from another person, communicating your wants and needs, all those things that will prepare the learner to learn better in a typical learner environment.
Q: What if you are an adult who wasn't diagnosed early and didn't get that intervention?
Patrone: Behavior analysis is an optimistic field. When you work with people with disabilities, you have to be able to identify individual strengths. You have to be able to build on that. You have to be able to see their potential. We believe very strongly that everybody's learning all the time. Everybody has potential. We had people in their 60s in the clinic where I was working. We can always take you from point A to point B. We might not always get to everything we hope to accomplish but can always move in that direction.
Q: What are the key questions still awaiting concrete answers?
Patrone: The etiology, how this disorder develops in an individual, why it develops in some people and not in others. How do we prevent autism? We as behavior analysts try to put ourselves out of work.
Knapp: There's always somebody, somewhere who wants to improve some kind of behavior. I'm always working on myself to improve my carbohydrate intake, my caffeine intake. The technology that we have at our fingertips as behavior analysts is so strong, and so powerful that we can help people, not just with autism – where our scope is restricted currently in New York State – but we can help people. What's better than that?
Twitter: @Bnrefresh, @ScottBScanlon