VOLUME 02
ISSUE 02
Conceptions and Perceptions of ABA
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ON THE SPECTRUM IN
ADULTHOOD
April 29, 2021
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A NEWSLETTER PROVIDING RESOURCES FOR THE
ADULT AUTISM COMMUNITY
Brought to you by the
Rutgers Center for Adult
Autism Services (RCAAS)
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A MESSAGE FROM
THE SCALE DIRECTOR
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Welcome back! We hope you and those you care for are remaining healthy and safe. We are excited to be back and bring you this issue of our e-newsletter.
If you or your family is touched by autism, it is very likely that at some point, you have heard of, applied, received, or presently receive Applied Behavior Analysis (ABA). As consumers of any service, each of us is entitled to our own opinion related to personal experiences when using it. However, when it comes to a service that has the capability of affecting behavior, ultimately leading to change in either ourselves or the ones we care most about (i.e., ABA), those "opinions" can take the form of passions or missions.
ABA has scientifically been shown to be an evidence-based practice for improving a vast array of socially significant outcomes. However, ABA has also been described as harmful and damaging by some in the autistic community, as interventions are often focused on changing behaviors to seemingly, make the autistic person "non-autistic," more like their typically developing peers. These perceptions of ABA stem historically from the methods applied by researchers such as O. Ivar Lovaas.
Namely, the Lovaas approach is an ABA treatment package which, in some cases, among an array of reinforcement-based strategies, involves the use of aversive punishment (i.e., yelling "No," slapping the person's thigh). While results from several of Lovaas' studies have indicated improvements such as participants reaching typical educational milestones and higher IQ scores (e.g., Lovaas, 1987), those who do not advocate for ABA, condemn the aversive and punitive methods for addressing behaviors typically considered to a part of the make-up of those on the autism spectrum (e.g., self-stimulatory behaviors, vocal outbursts, etc.).
As we celebrate Autism Acceptance and Awareness month, understanding and embracing multiple perspectives regarding how ABA is applied is imperative. If we hope to move the field forward and affect positive change in the lives of all people, including those on the autism spectrum, we need to initiate a candid dialogue.
In this issue, we are proud to offer an array of perspectives on the topic in order to hopefully create a path towards improving socially significant outcomes for those on the spectrum, while respecting and embracing neurodiverse populations.
Be well,
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James Maraventano, EdD, BCBA-D
Director, RCAAS-SCALE Program
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ONE SMALL STEP: EMPOWERING AUTISTIC INDIVIDUALS TO LEAD MEANINGFUL AND ENGAGED LIVES
Heather M. Brown, EdM, PhD
Assistant Professor
Dept. of Educational Psychology, Faculty of Education
University of Alberta, Edmonton, Alberta, Canada
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Living with an autistic neurodivergent brain in a world dominated by neurotypical brains is often difficult. Our intense interests, our ways of thinking, and our behaviour are often interpreted under a neurotypical lens, which at best means that our behaviour will be misinterpreted and often leads to psychological harm (Robeyns, 2016). Internalized ableism is that intense flash of shame that crashes through my nervous system every time I notice that my behaviour might be interpreted as odd, rude, or socially naïve. I am generally aware that my intention was not to be offensive, nor to say something that will make me the object of ridicule by others, but it still occurs, because it seems that many of the ways that I most naturally seem to communicate cause offence or provoke ridicule.
One really good example of this is my constant tendency to jump into a conversation before the other person has finished speaking, a characteristic that is shared by many neurodivergent brains like mine. Yet, despite others' tendency to interpret this behaviour as rude or uncaring, I often find myself unable to stop – at least not as often as I would like. Recently, a TikTok video created by Sari Rachel (2020, February) sparked a lively online discussion about how communication styles vary across groups and cultures (Borresen, 2021). Drawing on the work of sociolinguist, Deborah Tannen (2005), they suggest that my communication style could be characterized as ‘cooperative overlapping,' which they define as “ occurring when the listener starts talking along with the speaker, not to cut them off, but rather to validate or show they’re engaged in what the other person is saying” (Borresen, 2021, para. 2). This is such a small change in how my behaviour is framed and understood, but it has such a huge impact on the story of who I believe myself to be.
I learned very early on that it was important to try to be like everyone else in order to fit in and belong. The use of compensation and masking strategies, also known as camouflaging, are often used by individuals with and without autism to blend into their social surroundings by mimicking the behaviour of others and, in the case of autistic individuals, suppressing autistic traits. We may mask our autistic traits to navigate social interactions more successfully, to avoid discrimination by appearing different, to secure employment, and to achieve academic success. However, trying to maintain this constant ‘façade of normality’ can come at a high cost, because none of us maintain our masks all day long every single day. We all need to be able to be our true, natural selves more of the time, rather than less. Thus, spending too much time camouflaging and masking can result in exhaustion, feelings of worthlessness, anxiety, depression, and suicidal ideation (e.g., Cage & Troxwell-Whitman, 2019; Hull et al., 2017; Livingston et al., 2019) as illustrated in the quotation below by an autistic blogger and self-advocate, Rhi ( @autistrhi).
“I became my own worst enemy. I controlled any stimming in public, I mocked myself in private. I criticised myself for any reaction outside of the norm. I told myself how useless I was for experiencing the world wrongly. I did my best to see it the right way.” (Rhi, 2016, para. 12).
Neurodiversity proponents rightfully assert that achieving a high-quality of life would be much easier for autistic people if society were more willing to value, accept, and make accommodations for our brain-based neurological differences. But currently, society is not this accepting, so we often need to seek outside support to mask our more obvious autistic tendencies in order to be more successful at work or school. However, when an autistic person asks for support, the role of the helping professional must be to help us learn a variety of new skills and strategies, so that we can continue to pursue personally meaningful dreams, goals, and ambitions. Yet, at the same time, the helping professional should always make it clear that there is nothing inherently wrong with our natural autistic traits and behaviours. Furthermore, the neurodiversity movement implores helping professionals to remember that we must not judge the success of any form of intervention by whether or not the autistic individual is now able to act just like everyone else (e.g., Ne’eman, 2010). Instead, a successful intervention should be judged by whether or not the autistic individual is now able to experience greater overall happiness and well-being than ever before.
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ABA FOR CONSENT AND
SELF-ADVOCACY SKILLS
Rion Hoffmann, EdM, BCBA
Program Coordinator, Douglass Developmental Disabilities Center
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ABA is widely recognized as a scientifically valid and effective approach for teaching skills and treating behavioral issues associated with Autism Spectrum Disorder. However, there is a longstanding discussion in the field of behavior analysis around the ethical issues that arise when a client’s right to make choices is limited in the service of treatment, with an overall assertion that clients have the right to make choices and opt in and out of a treatment. This requires that staff provide opportunities for choice and respect their client's decisions (Bannerman et al., 1990; Fabrizio, 2012; Favell & McGimsey, 1993).
Board Certified Behavior Analysts (BCBAs) are being called into conversations about the ways in which our clinical and research practices have caused harm to individuals and communities. As a result, many are reconsidering and adjusting these practices as needed in order to be responsive to and respectful of the individuals we serve. ABA does have a history of being used in harmful ways to shape or extinguish behavior without client assent, and some BCBAs are advocating for a self- and field-reflective approach in recognition of this history. These BCBAs are practicing cultural humility and listening, to understand the critical voices of autistic adults with personal traumatic experiences with ABA, who assert that their consent/assent for treatment has been overlooked and undervalued. By acknowledging the harm that has been done and putting in the careful work to adjust clinical practices to an assent-based model, these scientists are calling on the field to course-correct, use an affirming approach to those we serve, and in doing so, aim to rebuild trust where possible and increase the social validity of the applied science of behavior.
One way that BCBAs are doubling down on their commitment to embedding individual autonomy, assent, and choice into intervention, is by incorporating principles related to Acceptance and Commitment Therapy (ACT) into their clinical practice. ACT, which is grounded in the principles of behavior analysis, supports individuals to cultivate greater awareness and acceptance of their private internal experiences while also focusing on developing flexible repertoires of external behavior that are guided by the values they’ve identified for themselves (Byrne, 2020). A growing number of BCBAs are using ACT to help individuals with autism identify their personal values; target specific behaviors that move them in the direction of those values; and teach flexible, functional contingencies (rather than rigid rules) in order to create positive outcomes that are personally significant. Behavior analysts are also using ABA techniques such as Behavioral Skills Training (BST) to teach self-advocacy, body autonomy, and setting and respecting boundaries (Bollman et al., 2009; Bell, 2020), as well as strategically collecting and using data on client assent and happiness throughout programming as a primary guide to inform the direction of their programming.
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THE COLLEGE EXPERIENCE WITH ABA AND HOW IT'S NOT JUST DTI
Courtney Butler, MS, BCBA
Program Coordinator, RCAAS-CSP
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For many students, college can be a time for incredible growth. Learning to navigate the campus, getting adjusted to classes, and making new friends is all part of the adaptive process of enrolling in a campus-based university. Learning these skills can be difficult for anyone, but may be particularly challenging for students with social communication or executive functioning deficits. As a widely used approach to increase socially significant behavior, especially those present in college, ABA may be a good foundation for supporting our students.
When we think of the use of ABA, we often think of skills taught during discrete trial instruction (DTI). College is not a controlled environment where daily living skills can be easily taught in a classroom at a desk; college is a natural, dynamic environment, not susceptible to DTI. There may be students that need a higher level of support and skills to be broken down into smaller, structured steps, but this is only one end of the continuum. If you look at the other end, there may be students with less difficult challenges that may be suitable to receive flexible supports.
When it comes to college, we have to get creative and think of methods of supporting students outside of the metaphorical (classroom) box. The use of ABA is helpful in this case, because it is an evidence-based, individualized approach rather than a more manualized intervention. ABA is a scientific discipline concerned with applying techniques based upon the principles of learning to change behavior of social significance. This is the most common and effective treatment for helping people with autism and other developmental disabilities, but it can also help individuals with other support needs, such as college students. The individualized nature of ABA can translate well when it comes to supporting this particular population.
In college, many of the skills that students are encountering have a high level of social significance. During these four years or so, students encounter various skills outside of just academics. These can include independent living skills, potential transportation skills, critical thinking and problem solving, teamwork and collaboration, and everything in between. Although all of these skills may come to light in college, they may not always be explicitly taught. To counter some of these difficulties, universities will typically have various forms of supports for students. The most common is an Office of Disability Services, but supports may even extend to specific supports for students of particular demographics.
As prevalence of ASD continues to grow nationally and particularly, in the state of New Jersey, we at Rutgers attempt to incorporate the mission of responding and accommodating the unique needs and diversity of students on the spectrum at a university level. The College Support Program is a unit of the RCAAS, and we assist undergraduates with an ASD through direct support and coordination of university services. Although there may be some difficulties that our students encounter, they have incredible strengths, and college can be a great place for students with ASD to learn, grow, and expand their interests.
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BRIDGING THE GAP BETWEEN BCBAs AND AUTISTIC ADVOCATES
Amy Gravino, MA, CAS
Relationship Coach, RCAAS
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When I was growing up, I would hear my mother speaking to our relatives in snatches of Italian over the phone, and when I spoke to them, she would interpret from English to Italian and vice-versa. I remember marveling at how effortlessly she would slip into another language, and how easy she made it seem. It wasn’t until I became an autism advocate — and especially while pursuing a graduate degree in Applied Behavior Analysis — that I realized how challenging that role can actually be.
As behavior analysts and proponents of ABA, it is important to understand that the “applied” part of the field means not just how we apply the principles of behavior analysis to our clients and students, but also how ABA applies to the ever-changing world in which we live. Historically, ABA has been used with some of the most marginalized and vulnerable groups of people in society — most notably, individuals on the autism spectrum. When ABA first came into wide use, these individuals did not have a voice within the world of behavior analysis or society at large, and it’s only as the Disability Rights movement has gained traction and technology has evolved that this has begun to change.
Over time, people on the spectrum have developed a community and amplified their voices online. Like any community, autistic people have worked to come together to raise our collective concerns to the neurotypical majority, and many of those concerns are related to ABA. Conversations about ABA have sprung up on numerous Internet forums, and behavior analysts have been met with resistance when trying to take part in them.
As an autistic adult who also has a Master’s degree in ABA, I have learned to speak two languages, understanding and interpreting the perspective of individuals on the spectrum to behavior analysts, and vice versa. I have the ability to take part in those conversations and to speak from both sides, even as I feel not entirely welcome on either one. All too frequently, autistic BCBAs and professionals face ostracization and exclusion from both communities, with one side seeing us as “traitors” and “self-hating autistics,” and the other side not seeing us at all.
That is why one of my goals is for us to be seen and for adults on the spectrum to have a presence in ABA. But how do we bridge the significant gap that exists between autistic advocates and BCBAs, and establish a dialogue between these often very disparate groups?
If autistic advocates and BCBAs are to come together for the greater good, we have to start listening to each other. The emotions that many behavior analysts dismiss as “mentalistic” are a crucial part of being a BCBA, because ABA doesn’t just affect autistic people’s behavior; it also affects our emotions, and the way we see ourselves in the world. But if we decide that emotions don’t matter, it becomes entirely too easy to ignore our own, and someone else’s. We also need to shift the focus away from ABA as something that eliminates problem behavior, to ABA as a tool for teaching skills; something that doesn’t make people on the spectrum a less autistic version of themselves, but that helps us be the best autistic version of ourselves that we can be.
Bridging the gap between autistic advocates and behavior analysts is not something that can be accomplished by one person alone. Those of us who have been working to establish a meaningful dialogue know all too well how many challenges lie ahead, but still, we keep fighting. Behavior analysts need to stand up when it is easier to sit down, be unafraid to listen to criticism, find a way to leverage that criticism to improve the field, and to make a difference in the lives of people on the autism spectrum.
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For related continuing education:
Upswing Advocates and Central Reach offer courses such as: Assent Withdrawal, Compliance, and Preventing Client Abuse, and Client Dignity in Practice: Best Practices for Trauma-Free ABA. These courses are designed to enable ABA practitioners to better identify, measure, and respond to assent withdrawal and use affirming strategies with neurodiverse clients.
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The College Support Program (CSP) at RCAAS is Accepting Applications!
The CSP is a comprehensive program for matriculated Rutgers University undergraduate students with ASD that offers assistance with academic and life goals and peer mentor support as they prepare for graduation. The CSP is currently accepting applications for the 2021-2022 academic school year. Current, incoming, and transfer RU undergraduate students with an official ASD diagnosis, including Asperger's Syndrome, are welcome to apply.
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Disability Sports, Health, and Wellness Conference
On Tuesday, April 13th, the RCAAS joined key community organizations to discuss the intersection of disability and sports at the first Disability Sports, Health, and Wellness Conference. The conference, hosted by Rutgers' Department of Kinesiology and Health, called attention to the importance of disability visibility in the sports community.
RCAAS Executive Director, Dr. Christopher Manente, moderated the presentation "Barriers & Benefits to Participation in Sports and Recreation for Adults on the Autism Spectrum," which featured Alex Scheck, SCALE Program participant and autistic gold-medal winning athlete, and his mother, Angela Scheck. Together, they shared their experiences with competitive sports, which they recognize as playing a vital role in fostering social connection and inclusivity.
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RCAAS featured in the Rutgers School of Public Health - CLEP E-News
In the latest issue of the Community Living Education Project (CLEP)'s newsletter, Dr. Christopher Manente highlights the new, state-of-the-art RCAAS Community Center and RCAAS programs. The feature provides an overview of each program - SCALE, CSP, PSC, and IOC (forthcoming this year) - showcasing the groundbreaking and innovative steps the RCAAS is taking to improve service, training, and research to support adults on the autism spectrum.
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NJ 101.5 Highlights Our New Community Center
Media coverage of the new Community Center continues as palpable excitement surrounds the new space. In a phone interview with New Jersey 101.5, Dr. Christopher Manente shares what the Community Center stands for and the unique amenities it offers.
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Staff Spotlight:
Amy Gravino, RCAAS Relationship Coach
Congratulations to Amy Gravino on her recent features!
In an article written for CNN Opinion, titled, "I now know what caused my autism, which changes everything — and nothing," Amy shares what her childhood with an autism diagnosis was like, and how that led to a career that would open new doors for helping teens and adults on the spectrum.
With a desire to spark open discussions, Amy also participated as a guest debater on the podcast, ABA Ultimate Showdown, to discuss stereotypy and its place in ABA. Round 10, "The Ethical Implication of Stereotypy Treatment" presents the following statement offering arguments to both sides: “Stereotypy as a symptom of autism does not need to be treated.”
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Research Participation Opportunity
Dr. Vanessa Bal, Karmazin-Lillard Endowed Chair in Adult Autism, Director of the RCAAS Psychological Services Clinic (PSC) and the LifeSPAN ASD Research Lab, and her colleagues, are seeking participants for a study on physiological responses and emotional experiences. This study involves one visit to Rutgers campus and pays $10/hour (visits typically last 1-1.5 hours). For more information click here. Information about other online studies can be found here.
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"It's not what you look at that matters,
it's what you see."
- Henry David Thoreau
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NEWSLETTER TEAM
Dr. James Maraventano,
Editor-in-Chief
Kim Spinelli,
Senior Copy Editor
Anna Schnetzer,
Layout & Design
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