Our fifth and final Special Agents of Change webinar “Uniquely Human: A Different Way to See Autism and Create Pathways to Success” with one of the world’s leading authorities on autism, Dr. Barry Prizant, covered a new perspective and approach to understanding and treating students with autism. After the webinar, our co-founder and co-CEO Clay Whitehead and Dr. Prizant addressed a few questions submitted by the webinar participants. Their discussion follows.
CW: It’s no surprise that you’ve sparked a lot of interest among our listeners. Let’s start with our first question. How does your Uniquely Human approach to autism differ from applied behavior analysis (ABA) therapy?
BP: Let me begin by saying that first of all, ABA therapy is not just one specific strategy, and those practitioners who are trained in ABA know that there are many different versions and sub-categories under ABA. Also, let me clarify that the Uniquely Human approach isn’t so much a therapy approach with designated techniques to follow. If you’re looking for designated techniques to follow, the SCERTS model includes an assessment and intervention paradigm.
Anyway, some of the differences that I would really highlight have to do with differences in what we refer to as “traditional ABA.” Many traditional ABA approaches, and even some contemporary ABA approaches, measure progress as the reduction or elimination of behaviors considered to be autistic behaviors. Of course, the focus is also often on building positive skills.
A few days ago, I had the wonderful opportunity to give a keynote address at the National Association of State Directors of Developmental Disability Services conference with Julia Bascom, the Deputy Executive Director of the Autism Self Advocacy Network (ASAN). We were having a discussion about the evolution of ABA approaches and the so many positive changes that have happened over the years, and she said this to me:
“The problem I have as a self-advocate, and that my association still has, is that the goal of ABA therapy is to make people with autism look and behave normally, but the Uniquely Human approach really does understand that there may be behavioral patterns that people with autism engage in that look different and unconventional, but might actually be helpful to them. We just can’t categorize behaviors on the surface as desirable or undesirable. If a student has to do certain activities or pace or move to self-calm, then these behaviors should be built into the program.”
That is one of the big differences with the Uniquely Human approach. We don’t start by categorizing behaviors as desirable or undesirable; we start with really asking what I refer to as the “deep question of why,” from the person’s perspective, why they might be doing this, and how can we change environments in our practices. That’s another big difference: we have to really look at how we change our behavior in terms of interpersonal supports and learning supports, and it goes into a lot more than just the very common ABA practice of setting up reinforcement schedules and how faithful we are in following those schedules.
In the Uniquely Human approach, we feel we need to be much, much more flexible by constantly reading a student’s emotional regulatory status, and really getting to know that student as they develop mentally, which is another big difference. The Uniquely Human approach is steeped very deeply in research on child and human development and differences that we see in people with autism and learning differences, and we want to understand and honor those learning differences.
Lastly, the Uniquely Human approach focuses on self-determination and giving as much control as possible to a person with autism. I always found it interesting that the teacher-directed practices often make decisions for students with autism when they’re very young, but then when these individuals reach the teenage years, there is a shift in focus towards self-determination and choice. By this point, we have taught students to be passive and to respond when prompted to because we’ve made the decisions for them up until this point.
I don’t want to overly generalize ABA because it is such a wide range of practices, but in general, these are the differences that I see and certainly the differences that many people with autism see, especially those who are self-advocates.
CW: Some people think that ABA is the only way to work with children with ASD. What’s your advice for those who really think there’s only one way, or who may not be open to alternate methods?
BP: ABA has made many positive contributions to the emerging and current practices in autism, but when we hear ABA is the only way to treat ASD – which we still do hear from some practitioners and see on some agencies’ websites – it is not factually correct. Major reviews of interventions in autism have indicated that based upon the current level of methodology and research, we cannot make that statement. It is true that other development and relationship-based approaches were not around at the beginning, so good research to demonstrate the efficacy of those approaches was nonexistent, but that has changed. Now there is efficacy data available on relationship-based approaches, as well.
I actually published a three-part article on this a few years ago and one of the sections was called, “Is ABA the Only Way?” In terms of treatment options and parent choice, and if we are truly family centered in our practice, we should not be telling parents that ABA is the only approach, or, especially with the research base now, that this is the only approach that works. Different approaches have different goals and a different culture surrounding that approach.
For example, in ABA, there has been traditionally more of a focus on teaching school readiness skills, cognitive skills, and so forth, whereas in other approaches, there has been much more of a focus on developing relationships with other children and developing social skills. Now there are hybrid approaches. As a matter of fact, there’s a new category called naturalistic behavioral developmental intervention (NBDI) approaches, which focuses on skill-building as well as relationships, peer relationships in schools, inclusion, and so forth. I find it interesting that in a recent article on the NBDI approaches, the authors included SCERTS as an ABA-based approach, which it really isn’t. It’s a developmentally based approach, but this coming together is very, very positive.
I think it’s very important for practitioners to be aware of and receive training in many practices. With the SCERTS model, we say one of the predictors of a good practitioner is a person who’s been trained in many different approaches, including contemporary ABA approaches.
CW: I think one of the reasons we received that question is because ABA is so entrenched in reimbursement mechanisms and policies. What do you see as the path forward for SCERTS and other evidence-based methodologies to receive at least equal treatment and economic reimbursement?
BP: Both Julia, who I mentioned before, and ASAN’s founder and director Ari Ne’eman have made it one of their major missions to bring more recent research to policy makers and to agencies that create the policies to demonstrate there are other evidence-based practices besides ABA.
On the policy level, I think the policy makers really need to be educated more about the current palette of approaches that are out there for individuals with autism. If you look at contemporary ABA practices, they have become more contemporary because leaders in contemporary ABA such as the Koegels at UC Santa Barbara and Gail McGee at Emory have pulled a great deal from developmental literature and child- and family-centered literature. I believe when people just hear ABA they think of it as being one thing, but these hybrid approaches have really helped to bridge the gap. So now, we need to educate policy makers so they do not base decisions on old information.
CW: Let’s go from the policy level to something more in the trenches. What is your advice for handling physical aggression toward the special education team from children with autism?
BP: Let’s define aggression. I have found that very often in my consulting, a student will be called aggressive, and when I actually observe an instance that meets the definition of aggression, such as striking out against another person causing physical harm, that there are other triggers. Aggression is not something that lives within the child. It might be that the child is touched unexpectedly and the child almost reflexively strikes out if they’re very tactilely defensive. If we define aggression very narrowly, in terms of the child intending to hurt others rather than simply engaging in behavior that may result in harm to others, we have to look at the purposes or function of the behavior.
A lot of what is defined as aggressive behavior falls into the categories of protest behavior or refusal behaviors. We do know that offering choices, whenever possible, is one way to reduce challenging behavior like aggressive behavior. If we try to impose decisions on kids such as “You have to eat this food,” or “You have to get online right now,” you’re likely to get push back, which might be aggressive or resistant behavior.
From the Uniquely Human perspective, we have to ask what our role is and question why we are seeing these patterns of behavior only with certain people or certain environments. I think prevention, of course, is the way we need to go. Now for those students who do demonstrate physical aggression, even after preventative supports are put in place, staff members need to be trained on a hands-off approach as much as possible. This teaches educators how not to throw gasoline on the fire, while keeping the aggressive students, as well as other staff and students, safe.
Finally, we have to look at what may lead to this aggressive behavior including biological, psychological, and social variables.
A few examples of a biological variable would be if the child is in pain. Psychological variables would be if there is an irregularity in a child’s life or if someone tries to touch them when they are tactilely defensive. An example of a social variable is if the child is in a socially overwhelming environment to the point where he or she feels the need to fight to survive.
For example, Ros Blackburn, a well-respected speaker on autism, was considered aggressive when she was young, but it was only caused by social variables. If Ros was in a noisy, busy room and needed to leave, anyone who tried to stop her wouldn’t be seen as a person. She would see them as a six-foot chunk of wood and would knock them over to get out of that room because she was in her fight or flight mode.
That’s another thing that I don’t think is really honored enough. Due to the neurological challenges, many people with autism are much more likely to reach that fight or flight survival level, and yet we still see it as behavior that is under the child’s or person’s control.
CW: Let’s talk about this from the classroom teacher’s perspective. What skills can teachers develop or work on to help include children with autism into mainstream instruction?
BP: Utilizing students’ strengths and acknowledging what a student likes to do is a very, very significant issue. This is easier with students who are older because it becomes clearer what their strengths and interests are. I have seen some pretty great turnarounds in terms of success of a child in a classroom when their strengths and interests were infused into academics and social activities with other students.
Another important skill is being able to understand the learning style of students with autism. It wasn’t until a couple of decades ago that we found out that most individuals with autism benefit greatly from multi-modal teaching, including visual instruction and visual cues and supports. This could help a student who has such a different learning style that they could benefit from different input modalities.
I think it’s also important that teachers understand emotional regulation and that it’s what keeps a child most available for learning and engaging with others. Teachers have to understand that a child with autism may need systematic breaks throughout the day, more so than a typically developing child. Although, research is now indicating that all students can benefit from exercise and movement so it may be beneficial for all students to take breaks throughout the day.
Lastly, being a team leader is essential, because I never think of a classroom teacher, an SLP, an OT, or a school psychologist as individual people on an island unto themselves. If there are support people in the classroom for a student with autism or other students, does the teacher have the skills to know when to seek support from them? Educators need to still lead the lesson while reading those subtle nonverbal cues that indicate a child is getting antsy and may need a break. Being at the head of the class and knowing the students well enough will help the team help the educators and the students.
CW: How can we best support students with ASD as they transition to work and college knowing that society will expect them to conform to social norms?
BP: This is one of those topics that is at the forefront of concern right now. There is more money being put into research on this topic now, and there’s more consideration for transition programs now. Knowing that society will expect young adults with autism to conform to social norms — we’re working on that with students all along ― but we be developmentally appropriate and we have to pick our battles. Sometimes we focus on rather inconsequential patterns of behavior that we want to change in people with autism just so others won’t question their behavior. However, there are many other patterns of behavior such as knowing how to engage socially or knowing how to greet others that make them more desirable partners. When they go into a workplace with these skills, they can make friends and work partners.
Certainly a big issue right now is matching the strengths and the learning style of people with autism to potential work opportunities. We know there are certain skills that certain people with autism might have that fit very, very well into the requirements of different work opportunities. To help place people with autism in the workforce, there are wonderful, innovative programs looking for mentoring arrangements for people with autism in the film or computer industry, for example. There’s a lot of interest in mentorships. So, rather than just providing general training to a person with autism, these programs make sure they are able to develop a relationship with somebody so they can trust in helping them develop skills.
There are even innovative internship programs for those individuals who are much more challenged in their behavior, but are still able to perform in different work settings. For example, some individuals with autism who are non-verbal or who use speech generating devices work in stores such as CVS Pharmacy, where they are able to stock the shelves and more. One person who worked with a young man with autism at a drug store told me he kept the shelves neater than they had ever seen in that pharmacy before.
Stephen Shore, a man with autism who also has a doctorate in special education, talks a great deal about matching the developmental profile and the learning strengths of a person with autism to a possible job setting or vocation, but that’s not enough.
Let me just tell you something from my personal experience. A young man I knew was diagnosed with autism when he was three, and is now in his mid-20s. He had the skills and really enjoyed working in bakeries decorating children’s birthday cakes. However, he found that if there was a very tense, stressful environment in one of the bakeries where he worked, he could not work. He felt the tension and the anxiety from the other staff, and even though he liked the work, the environment was not conducive to him staying well-regulated emotionally. Eventually, he was able to go to a calmer environment where he able to use his skills.
CW: I started off by saying we learned so much from the presentation, Dr. Prizant, but I think I learned an almost equal amount from the submitted questions and your answers. Thank you, Dr. Prizant, and also, thank you to our listeners.
To watch Dr. Prizant’s entire 90-minute webinar, click here. For more about SCRETS, go to SCERTS.com. For a list of Dr. Prizant-recommended resources, visit BarryPrizant.com or follow him on Twitter and Facebook.