How we define behavior, autism, and appropriateness are tricky questions to navigate, filled with subjectivity and emotion. The intensity with which we observe, reflect, and take action has tremendous potential to facilitate great differences in our relationships and ability to understand our children, our students, and ourselves.
Oftentimes in the Autism Spectrum Disorder (ASD) community, parents and therapists seek direct roads of educating their children or students craving some type of concrete system that can be held accountable for the highs and lows of the learning process. We seek tangible and mappable charts that say we can make a difference and help make progress that is quantifiable, so there is no doubt that what we are seeing is legitimate and not just based on hope and emotion but provable standards that will not be doubted. We seek answers for the behaviors which can seem impossible to understand in the loved ones we so deeply want to help and along the way we learn to pay attention to our own behavior, the immediate environment, and triggers which can be modified to give the greatest possible forum for interactions, trust, communication, and learning.
Applied Behavior Analysis (ABA) is the most widely known tool for this process, yet it has been recently deemed controversial. In the past, ABA was considered the only trustworthy and results-producing method of teaching students with autism. The range of multi-strategic approaches is broadening and ABA is taking on a more naturalistic appearance. Aversives and discrete trials are no longer synonyms for ABA and people are starting to think outside the behavioral box. How one defines and has seen ABA used often caters to how an individual views the methodology. As with all things, we are shaped by our experiences (both positive and negative) in our views of how something is defined and used. How it looks in one school or program is not necessarily how it looks in another, so how do we clarify and know what is the right choice? There are many facets to this conversation.
In seeking to understand the idiosyncrasies of what works or does not for our students, we must first be able to define the approaches we are seeking out. We must have an understanding of not just the diagnosis, but of our children’s personalities and behaviors, and of the methods and results we are truly looking for.
Applied Behavior Analysis (ABA) is the science of human behavior. In 1968 Baer, Wolf, & Risley defined it as, "The process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior."
This signifies that the effectiveness of the programs can be determined by only using one strategy at a time. We believe that one method alone does not stand as an end all be all. There is a connectedness that must be accounted for in relation to the home, the therapists, the families, etc. Albeit, we wanted to explore a purely behavioral perspective in order to better understand the trends and effectiveness of ABA and its evolution as a current support system to address students with all types of developmental challenges, so we decided to dig further.
The following interview with expert Adam Holstein was both refreshing and intriguing in its candor and balanced sensitivity. Mr. Holstein has a Masters Degree in Developmental Psychology from Yeshiva University and graduated from St. John’s University with a Professional Diploma in Clinical Child Psychology. He is also a graduate of the Washington Square Institute for Psychoanalysis and Mental Health. He is a New York State Certified School Psychologist and a New York State Licensed Psychoanalyst. Mr. Holstein works with people who have special needs in the family home, at school, and at homes under the auspices of the NYS Office of People with Developmental Disabilities.
1. How do you define ABA?
I define ABA as a set of empirically proven interventions or tools, which can be utilized to teach skills and/or change behavior. I believe all behaviors can be changed utilizing contingencies of reinforcement and/or consequences. Whether that is desirable in certain cases without consideration of the person’s feelings and/or without a full understanding of the “communicative function of behavior” is another very big question.
2. What are the pros and cons of the ABA model?
One of the most compelling arguments for ABA interventions is that the results of the interventions are observable and measurable. On a basic level, we all learn as a result of contingencies both positive and negative within our environment. Who we become is shaped and learned based on contingencies of reinforcement and consequences from our primary caregivers.
I want to emphasize that I believe both positive interventions and consequences are naturally occurring and ABA programs should reflect both. Some proponents of ABA suggest that only positive interventions are necessary to teach but I believe that by failing to put consequences in place, we do not prepare our children to deal with negative results or failure. They have to learn to accept consequences as well as accept rewards. In cases where children with ASD are learning to cope, by keeping the environment the “same” or establishing a “low stimulus” environment, we do not teach them to cope with change and/or being overly stimulated. We can start from a point of comfort “sameness” or “low stimulation” and return to the point of comfort at the end of the task, which should be reinforcing in and of itself. But teaching our children with ASD to accept/cope with “change” and/or “high stimulation” is important as it is inevitable that change will occur and unanticipated high stimulation environments will be run into.
The expectation on families to keep things the same or change their world entirely to the child becomes overwhelming to the family structure and in the end can cause a collapse of the individual and/or family system. Programs can modify routines in a systemic and measured way so as not to overwhelm the child with ASD.
This approaches a negative about ABA instruction. It is not so much theoretical but practical. That is, unless opportunities to practice the learned skills are presented in other environments so that generalization can occur, all the work of leaning is to no avail. In my experience, teachers as well as parents fail to encourage or ensure that learned skills are practiced outside of the learning environment. While this might be relatively easy with respect to ADL skills, when it comes to real life experiences in socialization, opportunities are as a practical matter still limited. Again, socialization skill instruction is not really addressing emotional development and/or engagement.
Last but not least I would like to address is the fact that many proponents of ABA do not “care” about feelings. The argument is that no matter what the feelings, they can change behavior. I believe they are correct. The problem comes when a child’s behavior is communicating something that they cannot verbalize. I have come across children who are acting out in school and were being evaluated, by myself and others to address challenging behaviors in the school. If the interventions were designed to look at the stimulus of the acting out or the rewards of the acting out behaviors alone, the challenging behaviors would have been “extinguished.” In one particular case, the fact that the child was being beaten at home with a belt might never have come to light. So we have to be careful to ensure we have a thorough functional analysis of behavior and we have to understand the emotional world.
I do this with a broad functional analysis of behavior FAB to ensure the “functional commination of the behavior” or simply put the “feelings” being expressed by the behavior are respectfully addressed and the child’s feelings, needs, and communication based on their emotional development and the feelings of the parent are part of the program design and intervention.
3. What advancements do you think have taken place in the last 5 years with respect to ABA?
With respect to ABA, I see the advances from the perspective of an increased number of curriculums addressing the developmental hierarchies in all areas of development, i.e., motor, language, cognitive, and social development.
4. What do you believe are the biggest myths or misunderstandings people have about ABA?
My biggest concern is that parents believe ABA is going to “cure” or resolve the primary issue with children diagnosed with ASD, namely a deficit in social skills, pragmatics, and emotional attunement. I see ABA being able to teach social skills if the child with ASD has the cognitive ability to negotiate this complex interchange. However, I have not seen or heard of a child where ABA can teach emotional spontaneity and attunement, empathy, sympathy or share emotional experiences.
This deficit is what makes ASD so devastating to parents raising their children, as there is little to no typical emotional engagement. A parent with acute observational skills might be able to perceive changes in activity, eye gaze, muscular tension as communicating feelings, but we have to be careful too that the parent or caregiver is not projecting what they think their child might be feeling or communicating. This is a problem with typical parents and children, namely parents think they know what the child is thinking and feeling, but unless we can clarify and get a response directly from the child, we can only “assume.”
We also hear of children who when they develop language skills are able to verbalize their experiences, and frustrations about not being able to communicate their needs or experiences of having their senses overloaded, but the questions; “What were they feeling?” as opposed what they were taught to say remains.
5. What does the future of behavior therapy look like for the ASD community?
I wish I knew. There is groundbreaking brain research on brain mapping and development and DNA mapping. Science and technology are expanding our understanding of the world and ASD exponentially. There are so many assumptions that we are making about ASD and any one could be disproved tomorrow, with new theory emerging, and that is progress. From individual cases, we overgeneralize and run to a new idea that an intervention that “worked” for one will work for all.
The Sunday Times had an article a few months ago that autism can be cured given certain intensive parent interactions and engagement. Without a detailed understanding of the specific child’s genesis of autism, be they biological, perhaps maturational, perhaps environmental and/or a combination of any and all of the variables, we cannot make a clear determination if any given intervention “cures.” Parents may believe neurological hypersensitivities, food allergies, vaccinations, fragile x syndrome, or children lacking mirror neurons are the causes. Has anyone heard of a child with fragile X syndrome being cured? I would be very surprised.
Also, the measure of the “cure” has to be examined. For example, if a child diagnosed with ASD can play electronic games with typical peers on the internet; Is he to be considered cured? This activity has very little to do with the issues of pragmatics or non-verbal communication and the concerns with perseveration, and lack of emotional reciprocation and responses, that are the basis for the diagnosis of ASD are not necessarily part of the game.
I think that as we understand ASD we are going to learn that there are many sub-categories and complexities to this diagnosis. A prognosis is susceptible to not only the innate abilities of the child but the support from the family and society. I am working with many agencies who are working with schools and businesses to accept the differences of the ASD community and integrate the children and adults into the mainstream.
The culture is changing and with the IDEA laws encouraging acceptance and support at least the social stigma will diminish. Parents, however, will still have to learn how to best parent their child with special needs, “consciously” adjusting their parenting to meet those needs and adjusting their expectations to accept and understand their child for who they are. Once that work is accomplished they will be and help their child meet his or her potential.
6. What do you believe is the greatest challenge and the greatest benefit of incorporating a multi-strategic approach in educational and social settings and home?
The greatest challenge of incorporating a multi-strategic approach is people. People when under stress look for a way to relieve that stress. When confronted by our child’s challenges we want to be there in any way we can and to “fix” the problem so that the child behaves and develops in ways consistent with our expectations, dreams, and wishes.
Due to the stress, we tend to focus on the one answer to solve it all. Taking on multiple strategies is overwhelming and “instinctively” counterintuitive. If one step such as ABA is embraced and progress is made then people stop looking and accept the status quo. The needs of the child with ASD, but what about the relationships between siblings and the special needs child? What about the parent's relationship? What about the needs of the typical child and his or her parents? In my work, all these needs, feelings, thoughts, and concerns are discussed and addressed.
7. When working with non-verbal and semi-verbal clients with autism, how do you gauge their ability to process and participate in counseling?
I need to know what you mean by counseling. Counseling can mean teaching facial expressions and pairing words like “angry” with an angry face. Is the person being referred able to abstract, generalize, and so on? Also, why is the person being sent to a counselor? Why is the person nonverbal? What is the cognitive level of the person? What are the receptive expressive language skills of the person? What is the reliability of their communications via communication devices? Do you get the same answer to the same question each time you ask it?
We can look at patterns of behavior and interpret the patterns as indicating some meaning, but we have to be careful. I would also look at how the family has come to understand the meanings of the child’s non-verbal behaviors. Often it is useful to work with the family as well as the child based on this understanding.
8. How do you encourage self-advocacy for the student while honoring the family's desire to "fix" behaviors?
Dare I say this is a loaded question. Some interventions are designed to “fix” a deficit-based on a failure of bonding or emotional engagement. Self-advocacy is needed because someone somewhere is teaching the child and those in the community that they are fine the way they are. Everyone else has the problem if they are trying to “fix” you. Otherwise, the notion that a child or adult has to advocate for themselves would not exist.
Conversely, most of the population at large has the idea of “fixing” anything wrong with their child or changing someone who is different. If this were a universal position that children with ASD had to be fixed there would be no need for self-advocacy since it would be the whole of the child’s experience. That said, when anyone has a problem interacting with others, it becomes a matter of degree. Let’s take a hypothetical situation as follows. If a child is self-stimming so frequently they do not engage in any activity, would there be an argument against medications or strong behavioral interventions? If on the other hand, the self-stim behavior or rocking could perceptually be normalized by putting headphones on with music at the same time, be a comfort to the child with ASD so they can function, why not?
Each case is like a fingerprint. It is unique as to the decisions made by the parents and by the child (if possible). The decisions are going to be based on the perceptions, knowledge, and beliefs of those involved. What is right or wrong for one child and family will not be the same for the next child or family. When I work with families my goal is to help the families emotionally find what they are comfortable with and what they want for themselves and their child. The thoughts and feelings about fixing or changing are all a matter of degree.
9. What do you believe "stimming" is?
I would hold to the fact that the “stimming” behavior is a way of regulating one’s body and experience of the world. However, we can and do interpret the meaning of “stimming” behaviors on many levels, however. The research and stories will attest to this. But when working with the family, I work with their ideas, feelings, and beliefs and certainly if the child can tell me why they stim, all the better. If the child cannot tell me directly, as we address the needs of the child we monitor the stim behavior(s) and try and understand them.
By the way, for several children up to nine years of age, I have found a shower or bath in the morning, while a big deal scheduling wise for the families, has been extremely useful in helping the child regulate themselves throughout the day and function with less stimming and or acting out behaviors.
10. Are there times when you feel stimming is a supportive tool for clients to cope or purely an interfering behavior that should be extinguished?
From a behavioral point of view, it does not matter what I feel, does it? Let’s argue this from both sides for a minute. I would think that stimming behavior has some function otherwise it would not be there in the first place. We could argue from a sensory point of view, it is regulating the nervous system, but it might facilitate escaping demands, it might give them attention and/or allow them to get preferred toys so they stop. As such the behavior could be “over determined.”
So let’s assume for a minute the stimming behaviors are a way of self-soothing and it is all they want to do. “Should we stop it?” If so, “Why?” If not, “Why not?” “How much is ok?” "How much is too much?” When I work with parents, these decisions are made by the parents and schools. Stimming from strictly a behavioral point of view might well be a high probability behavior and become useful a contingent reinforcer. I try not to take a position until there is some scientific evidence tied directly to the specific case I am working on. I help the families answer the questions as best we can and work with them based on their desires and only interject my thoughts after the fact.
11. What are your thoughts on empowering individuals with autism and their diagnosis?
This is a broad question. First and foremost, “What capacity does the child/adult have to make decisions on their behalf?” Individuals with ASD function at all different levels. I see no reason why they should not be able to make decisions from themselves consistent with their level of functioning and ability to make informed decisions based on short term and long term pros and cons, health and safety, and so on.
This is a question I address with families who have typical children who act out when they do not get their way and what they want. They are in control of the household. Should a 5-year-old have that kind of control, should a 10-year-old? We learn to make informed decisions by being as pragmatic and reality-based as possible. Children make decisions based on short term needs and desires.
12. How do you recommend families discuss their child's diagnosis with them?
Good question. First and foremost, parents have a difficult time addressing the realities of the diagnosis and the primary reason is that they have a lot of feelings and thoughts about the differences the diagnosis represents. So first the parents must be ready themselves to talk pragmatically and realistically about what their child’s specific ASD represents, in terms of being different. There are realities that might change but perhaps not. The discussion can always start with questions to see what the child is thinking and feeling. Parents should be as realistic about the differences as possible.
The tone and manner have to be practical and informed: “Oh you need glasses, you can see better with them, but people might make fun of you if you wear them.” Yes, you relate differently to others. You don’t show your feelings so easily or understand what others are feeling so easily. Perhaps you can ask, “What they are feeling and how they would like to you to respond?” If you feel and think it is ok to give them what they want then do so. Again as I reflect on what I am writing, each case has to be looked at individually as there are always so many needs, social circumstances, and choices that have to be made on so many levels, the child with ASD and even typical children do not always make good decisions.
13. What tools are available to help individuals use their autism and transform some of their challenges into assets?
I am not sure there are “tools” proper to help. The creativity of parents and society in changing perceptions and ways to work with the challenges of say preservative behaviors or “fixations” on numbers, maps, transportation toys, whatever form the challenges take, it is a challenge in and of itself. In my work with children, I find it useful to discuss the interest in as much detail as possible, while also looking to expanding the interest and bring in other skill sets and knowledge. These can tie into a set of skills that could be adapted into other play skills or work. Clearly where work tasks are repetitive or require finite math skills, accounting, engineering, and so on, the skills and predispositions of the ASD population are assets.
14. What do you feel the community at large and families of individuals need to know in order to better support and accept individuals with autism so they can thrive in the home, school, and their neighborhoods?
What comes to mind is that people typically need to relate and engage others. People are basically social animals. People with ASD are not as social and are not as driven to have social contact let alone relationships as they are typically thought about. If we can accept that some people are just not as interested in relationships and are happy that way, then the pressure is off to do something when nothing has to be done.
15. Any thoughts or philosophies you believe need to be acknowledged and care to elaborate on?
I am concerned that there is a social pressure within the ASD community and perhaps others to celebrate the differences and look positively at the challenges. A political correctness of what to say and how to say things can limit the expression of many feelings. So much so that I find myself reluctant to write that “some parents feel a tremendous loss” when they have a child with special needs, ASD or otherwise. Life is going to be different than what was hoped for and/or expected. Life events are going to be different, and yes, while there is much to celebrate, there are also feelings of loss and disappointment. These feelings will continue throughout the life span and need to be accepted and worked through each time they occur.
I am concerned that while some families are able to do the work on their own and find ways to celebrate, there are many families that have different feelings and thoughts, that need expression as well. It is my belief that unless the ASD community is open to discussion about all the feelings positive and negative, angry and resentful, feelings of loss and being burdened by the extra stresses a special needs child represents, the community is not fully addressing all the needs of all their families within the ASD community.
At the end of the day, all of these questions will remain lingering in our minds, wondering what is right, if we did enough hoping we are finding the “right way,” we must stay on the quest for knowledge and balance it with instincts. These dialogues are vital to our community and to honoring and respecting our autistic loved ones in their pursuit of happiness and progress. If we are to be shaping behavior, we must listen to the voices of those acting to catch our attention and let us know what is really going on. We might want to look at how our behavior needs shaping as well!