Voices for All: Ash Franks Talks about Supporting Autistic People While Being Autistic and Her Role on LEARN’s New Neurodiversity Advisory Committee

In September 2020, LEARN convened a group of neurodivergent staff to form our Neurodivergent Advisory Committee. The committee reviews and gives feedback on matters relating to neurodiversity and other person-centered ABA topics and was instrumental in the content, messaging, and visual design of LEARN’s Neurodiversity Values Statement. We asked Ash Franks, a member of the Neurodivergent Advisory Committee, to share her thoughts with us.   

 

HI, ASH! FIRST, I’D LIKE TO ASK YOU WHAT IT MEANS TO YOU TO BE AN AUTISTIC PERSON SUPPORTING OTHER AUTISTIC PEOPLE? 

Supporting other autistic people while being autistic means listening to what they have to say, however they communicate it, whether it be through an AAC device, sign language, PECS, or verbal language. It also means giving them breaks if they need it, and allowing them to use tools to cope (e.g. stuffed animals, headphones, weighted blankets, etc.). Looking back on my experiences as an autistic child has been very helpful in trying to help children who are at AST.

HOW DOES BEING AUTISTIC INSPIRE YOUR WORK IN ABA? 

Being autistic allows me to see different perspectives and ideas compared to neurotypical people, as they tend to think differently than I do.

TELL US A LITTLE BIT ABOUT THE NEURODIVERGENT ADVISORY COMMITTEE AND HOW IT WORKS. 

Basically, we are trying to re-vamp ABA materials through a more neurodivergent-friendly lens, so we can make our treatment as effective as possible. Having autistic people and other neurodivergent people look at ABA therapy through their eyes allows them to explain what works and what doesn’t work. This way, we can work to have treatment be as effective, safe, and as fun as possible for everyone involved. Having BCBAs see the autistic perspective is important because we have direct experience with what worked for us growing up versus what didn’t and might be able to help streamline the treatment to be as effective as possible.

CAN YOU GIVE ME AN EXAMPLE OF SOME FEEDBACK YOU HAVE GIVEN IN YOUR ROLE ON THE COMMITTEE? 

I tend to give feedback on the more artistic and creative side of things, as I am very geared towards having an eye for creative things in the world.

FROM YOUR PERSPECTIVE, WHY IS IT SO IMPORTANT TO INCLUDE AUTISTIC PERSPECTIVES IN OUR FIELD? 

Including autistic people in ABA is super important because we need to account for neurodivergent perspectives to make treatment as effective as possible. Since I am autistic, I can give a firsthand account of what has personally worked for me throughout my life, and what hasn’t. I myself was never in ABA therapy growing up, but I did other types of therapies that I also have found helpful from time to time.

WHAT ARE SOME OTHER PLACES IN OUR SOCIETY THAT YOU THINK IT WOULD BE HELPFUL TO LISTEN TO THE AUTISTIC PERSPECTIVE?

I think listening to autistic perspectives in the workplace would be very helpful. I think having a quiet room for staff that has sensory toys specific for staff would be very helpful, also maybe including a comfy place to sit with a weighted blanket would be good too. Another place it would be helpful to listen to autistic people is when it comes to shopping at malls, since malls can be overwhelming for most autistic people. I know some stores have “quiet” shopping hours where they reduce the lighting and turn off the music, and I really wish more places would do this.

ASH, THANK YOU FOR YOUR THOUGHTS AND FOR THE EXCELLENT WORK YOU’RE DOING ON THE NEURODIVERGENT ADVISORY COMMITTEE!

Ash Franks is a Behavior Technician for Learn Behavioral. Ash works in AST’s Hillsboro, Oregon location. Outside of work, she enjoys photography, cooking, video games, and spending time with family and friends. 

What is Contemporary ABA?

RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL

It has been said that history is written by the victors. The colonists won the American Revolution, and so the war has been cast as a noble struggle to escape the yolk of tyranny. Had the British won, history books today would memorialize the conflict as the empire’s rescue from the clutches of ungrateful rebels.

Likewise, able-bodied people comprise the dominant culture in America; thus, we define “normal” along the contours of able-bodied activities. We consider, for example, an autistic mind or a visual impairment that enhances other senses to be of diminished value. In fact, they may simply be different ways of understanding and interacting with the world.

For many of the 60+ million Americans who have some kind of disability, this is a challenge. They are forced to fit their round life into the square hole of able-bodied culture despite the ease with which culture could accommodate everyone, including those with disabilities.

Ableism and Ableist Misconceptions

The inability of the able-bodied to recognize that not everyone is like them has given rise to a new label – ableism. This is the equivalent of the racism White Americans exhibit by failing to recognize the advantages they have versus people of color. We must be attentive to eliminating assumptions that reflect an able-bodied view of the world that does not pertain to everyone.

People with disabilities tell me that ableist thinking includes a variety of knee-jerk assumptions and misconceptions, including this one: that people with disabilities have no autonomy and constantly need help, even if they don’t ask for it.

Another version of this is the idea that people with disabilities must constantly explain themselves, for example by detailing how they became disabled, or that they have average or superior intelligence even though they do not communicate verbally. It is also an ableist misconception that all disabilities are visible. This perpetuates stigmatization and mistreatment of people with mental illness, which is, after all, no different from physical impairment except that it affects the brain. Taken together, these false ableist impressions accrue as barriers to inclusion and equity for disabled people.

ABA Intervention

Applied Behavior Analysis (ABA), considered by many to be the gold standard of treatment for autism, has as its ultimate goal providing autistic individuals with the skills to function at their highest potential and live as independently as possible. The field of ABA has decades of empirical evidence to support its efficacy in teaching new and necessary skills and reducing challenging behaviors that interfere with learning.

Recently, ABA has increasingly become the target of much controversy as self-advocates are speaking up about their personal experiences with ABA and the rejection of the notion that teaching autistic individuals the skills we deem necessary without their input and self-determination is erroneous. Some advocates for this community argue that independence without happiness is a hollow goal, and that autistic individuals should decide what outcome they want to achieve. Becoming as much like everyone else as possible may not be it.

ABA, which is essentially the science of good teaching, has a long history and was originally developed in the 1960s by a group of researchers at the University of Washington. ABA was used to treat individuals with developmental disabilities and initially was a rigid, highly-structured and teacher-directed program which led to some of the negative experiences and associations with ABA. Historically, for example, ABA was used to reduce or eliminate “stimming” – repetitive physical movements and sounds that may soothe and reduce anxiety. We now better understand that stimming helps autistic individuals manage their sensory processing and their environments.

 Just like in other areas of medicine and science, the field of ABA has advanced in a significant and meaningful way to become a play-based, naturalistic, family-focused and individualized, contemporary treatment that is tailored to the unique needs and goals of each individual. Another hallmark of a good ABA program is the collection and reporting of data to demonstrate efficacy. Most payors today require providers to demonstrate success, validated by parents, of the participant measured by obtaining and maintaining goals that are developed by the provider and family together. If your service provider is not providing a program that fits this description, you are likely not in the hands of a provider who is adhering to best and current practices.

As the ABA provider community has the opportunity to learn from more adults, something that was not available when this science was first being applied to autism, there are more and more opportunities to adjust and modify services to meet the needs to each individual. The idea that we discard a technology that has successfully treated thousands of individuals because of negative experiences is akin to suggesting that we eliminate an entire specialty of medicine because of some failures of treatment.  Having said that, service should always be informed by the individual receiving them, and their advocates who have their best interests at heart.

Every negative experience is unacceptable and should be heard so that changes can be made to ensure an optimal experience for future clients. Good ABA programs are client-centered and solicit the consent and input of all involved. As you consider treatment for your family member or yourself, do your research and ask your provider the important questions:

o   Will I participate in determining the goals of treatment for myself/ my child?

o   How are your staff trained?

o   How is my child’s program developed? Do all clients receive the same program or are they individualized?

o   Will there be parent goals as part of my child’s program?

o   How often is my child’s program modified or revised?

o   How is data collected and reported? How often will I see data on my child’s progress?

 Your child’s program should be client-centered and future looking which means that your family and relevant caregivers are providing input into your child’s strengths and challenges, and that you and your child are helping to guide the goals of his/her program based on your preferences and needs.

 The science of ABA has a long history with decades of research to support its development and evolution. While ABA is most widely known in its application to autism, ABA was developed, and has been applied, to address many circumstances regarding behavior that matter to society. ABA is applied in many different areas including mental health, animal training, organizational behavior management, marketing, forensics, sports, and physical health, to name a few. Just as other areas of science and medicine advance and application of treatments change, so has the field of ABA. Many lives have been impacted by ABA for the better. It is incumbent upon the professional community to listen, learn, and evolve its practice so that their services are as relevant and effective as possible. After all, the purpose of ABA is to help consumers of these services achieve goals they define as meaningful and helpful.

Addressing Aggressive Behaviors in Children

Aggressive behavior is something that parents of children with autism or emotional disabilities are often confronted with on a regular basis. It can be a challenging, frustrating and emotionally draining experience. Through the support of a professional behavior analyst and consistent practices, parents, teachers, and caregivers can address aggressive behaviors in children and adolescents so that they can live productive and independent lives.

Many times when caregivers are faced with aggressive behavior, their impulse is to want to stop the behavior, and they may view the child as misbehaving. However, it’s important to understand that aggressive behavior is sending us a message. Every behavior serves a function— such as making a request, avoiding something, escaping a task or seeking attention. The same is true of aggression. For individuals with limited communication skills, aggressive behaviors can become inadvertently shaped by caretakers and others in their environment.

For example, a child throws a tantrum to gain access to candy. The parent gives the child candy to stop the tantrum. If this interaction repeats itself, the behaviors become reinforced and the child learns that tantruming is rewarded with access to the desired food. Next time, the parent may decide they are not going to give the child candy and so the child tantrums even louder and harder. If the parent gives the child candy, the parent has inadvertently reinforced the behavior. As parents, we all do this in very subtle ways regardless of whether our child has special needs or not, often without realizing that we are shaping our children’s behavior and strengthening the behaviors that are unwanted.

When children are small, it can be less of an issue for parents to manage aggression, or they may think that their child will grow out of it. It is easier to restrain young kids to combat and control outbursts, but if these are the only methods we use, we are not setting our teenagers up for success. It is important to understand why our kids are acting out and what they are trying to communicate. Once we know the “what” and the “why”, we can teach more appropriate means of communication to replace the need for aggression (such as making a verbal request and teaching the child to tolerate “no” when the answer is “no”). If the aggressive behaviors are not replaced by more appropriate functional behaviors, then we run the risk of shaping adolescent aggression which can include physical violence that is more serious and tougher to overcome.

If your child is demonstrating aggression, the best place to start is an assessment of his behavior to understand why the behaviors are occurring. A good assessment will tell you what the function of the behavior is, meaning— why he is acting out and what he is trying to communicate. Then a plan can be put in place to teach new methods for communicating effectively as well as reducing and eliminating the aggression using behavioral strategies.

Here are a few strategies you can use before aggressive episodes start:

  1. Give up some control over the environment or routines by offering choices; it does not matter if he brushes his teeth before changing clothes, but if having control over that routine helps keep your child’s aggression down, give up that control and let him choose. Providing choice also teaches independent thinking and problem solving which are critical skills for adult life.
  2. Prime your child by giving them a verbal “heads up” of what is coming: describe to your child when and what the expectations are for that setting.
  3. Use visual support like a picture board or a photo to help provide clear expectations for each activity or different parts of the day.
  4. Prompt and model the behavior you want to see instead of the aggressive behavior.
  5. Praise that behavior when you do see it so that it will continue to be a part of their repertoire. Remember if you like something you need to let your child know. In other words, catch them being good and if you like a behavior, reinforce it!

In the moment of the aggressive behavior, safety is most important! Do your best to keep yourself and your child safe. If you can redirect your child onto something else or an activity, that might be necessary.

Some parents of adolescents who display aggressive behaviors worry that it is too late for their child to have a fulfilling and independent life. On the contrary, it is never too late to start planning on a future for your child and working towards attainable goals. Think about what you want your child to be doing in a year from now and start working towards that today. If you want your child to ask for the desired item or preferred activity instead of tantruming to get it, start taking small steps now. If you are hoping they will have more friends in a year, start exposing your child to those opportunities and teaching the socially appropriate skills that will afford those opportunities. If you want them to have fewer aggressive behaviors, do not wait a year to start working to improve that behavior. It is never too late or too early to start working towards next year. The results will support your child in having their needs met and experiencing greater success at each stage of development. The ultimate goal is setting your child up for success and helping him achieve as much independence as possible.

-Richie Ploesch, M.A., BCBA, and Ronit Molko, Ph.D., BCBA-D

The Benefits of ABA in Dual Environments

When a child is diagnosed with autism, parents become charged with finding quality treatment – and the evidence-based recommendation is to seek out Applied Behavior Analysis (ABA).  Choosing the specific ABA program that is right for a child can feel daunting, especially if ABA is new territory for a family.  In this article, we look at the benefits of a program incorporating both in-home and center-based programs.

Many proponents of ABA like to state, “ABA can be done anywhere.” It is true – but we shouldn’t overlook another important point: the environment itself is a critical component of therapy.  Controlling the environment to some degree is frequently part of the teaching process.  Selecting a teaching environment is a decision that impacts the rest of the teaching strategy and so also has an effect on progress.

Common teaching environments for young children with autism include center-based ABA therapy, private or public school, a childcare environment, and home programs.   While there is not enough research to prescribe a particular environment or model generally for children with autism, many parents and professionals are finding that a multi-site model of a controlled environment (such as a center-based program) and a natural environment (home, childcare, school) provides the best of both worlds.

Benefit #1 – Social skills can be targeted consistently and with children in the child’s community.

It is necessary for peers to be available regularly for consistent teaching; in this respect, a clinic setting is ideal for having regular access to other children to practice target skills.  Ultimately, the goal is for the child to interact with the other children in their community, their siblings, classmates, and neighbors.  Having a regular home component allows the therapist to work on target skills with the people who will be important in their normal daily life, even if these opportunities aren’t as regular as those in a clinic setting.

Benefit #2 – Controlled Environment vs. Natural Environment: Best of both worlds

A multi-site model allows technicians to address the most challenging skills in a distraction-free environment, but still have access to the home or school setting, with all of its naturally-occurring distractions, to make sure that those learned skills are being put to use.

Benefit #3 – Consistency of the Behavior Plan

When a challenging behavior is treated differently across settings, it is more likely to persist; this set-up can even make the behavior worse in the long-run.  The best treatment involves the same plan being followed across the day.  Having professionals use a consistent plan in both the home and center environments also supports family members to do the same.

Benefit #4 – Assessment of Generalization

All programs must address the issue of generalization, but a multi-site model is tailor-made for this.  Generalization can be specifically addressed right from the beginning, either by teaching in both environments, or by teaching in one place and testing generalization in the other.

Benefit #5 – Ease of Group Work Vs. Ease of Parent Training – You Get Both!

One of the most important aspects of the teaching environment is the people present.  In a center-based program, other children are close at hand for social interactions, peer modeling, and working on group instruction, so these parts of therapy can happen regularly.  When ABA sessions are at home, it can be more convenient for parents to make themselves available for training.  In a multi-site model, the child benefits from both of these types of teaching opportunities.

Whichever provider a family selects, they should be sure to work closely with their team to personalize the child’s program to best meet their needs and the goals for their family.

– Richie Ploesch, M.A., BCBA & Katherine Johnson, BCBA

The Value of an Assessment after an Autism Diagnosis

By Chisato Komatsu, PhD, BCBA-D

When you have decided on a provider for ABA services, one of the first things a provider will do to better understand your child and family’s needs is conduct an assessment.  You may wonder, “Why is an assessment necessary? Why can’t we jump right into intervention and teach my child new skills?”  I’d like to clarify that the purpose of conducting an assessment is not to identify what is “wrong” with your child, but rather to identify your child’s needs and to help develop the most effective intervention possible to meet those needs. To develop an effective intervention program tailored for your child, the initial program goals need to be developed based on your child’s current skill level. The initial and ongoing assessment process, therefore, is critical in identifying the current skills and levels and the specific needs for your child.

The assessment process usually  consists of interviews with the client and/or caregivers, direct observations, and additional assessment tools and analyses depending on various factors (e.g., client’s engagement in challenging behaviors, requirement of the funding source, etc.). Through the assessment process, the assessor evaluates the client’s current skills and performance levels and also focuses on the environment and how it impacts the behavior.

Based on the assessment results, an intervention program is developed. Many factors, such as the client’s age, are taken into consideration when developing programs. For teenage clients, for example, the intervention may focus more on the client acquiring independent living skills, helping them be more independent in the community, whether that be completing the daily routine independently, going to college, or getting a job. Priorities of the family are often taken into consideration during the development of the intervention program.   For example, if the family travels across seas to visit other family members, successfully completing a long flight may be of high importance.

When starting an assessment process, be sure to ask questions. Ask questions to find out what is included in the assessment process, how it is going to be conducted, and how the intervention is developed based on the assessment results.

Watch our video on the value of an assessment.

A Response to “The Controversy Over Autism’s Most Common Therapy”

By Andrea Ridgway, Ph.D., BCBA-D

When reading a recent article entitled, “The Controversy Over Autism’s Most Common Therapy” published on spectrumnews.org and republished in The Atlantic, I was taken aback by the description of applied behavior analysis (ABA).  As a behavior analyst who works with an organization that serves 1,500 families per year, it is not my experience that our programs are controversial rather that they are highly effective and enthusiastically received by families.  However, it would be irresponsible to simply dismiss negative perceptions as misinformed or outdated.  There is more to this conversation.

How do behavior analysts define ABA?  Applied behavior analysis is 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 (Baer, Wolf, & Risley, 1968; Sulzer-Azaroff & Mayer, 1991).

The use of ABA in persons with autism was popularized by Ivar Lovaas, Ph.D. at the University of California Los Angeles (UCLA) where the use of sterile clinic rooms, robotic repetition of learning trials, and highly artificial delivery of awards and punishments were reported.  Increasing social skills and decreasing repetitive behavior were among the goals of the UCLA Young Autism Project. Lovaas applied the principles of behavior in the treatment of individuals with autism.  However, the interventions he used have been criticized for their harshness and some goals to “normalize” or reduce “autism-like” behaviors have been criticized as inappropriate.

The application of ABA with persons with autism has changed tremendously since Lovaas’ initial research.  Effective interventions based on the science of behavior analysis are anything but “one size fits all”.  ABA provides a technology to address individual needs; it is not a manualized treatment package that is applied to every child in the same way.  Each individual with autism presents with different skill deficits and behavioral excesses, and the reason these behaviors occur varies across individuals.

Behaviors are assessed to determine what purpose (i.e., function) they serve for the individual.  Once a behavior analyst determines why a behavior occurs, an intervention plan is developed.  For example, one child’s aggressive behavior may be maintained by attention from his parents, and another child’s aggressive behavior may be maintained by escape from non-preferred activities.  Therefore, the intervention for aggressive behavior will be different for each child.  In order to be effective, intervention programs must be individualized to the needs of the child and the function(s) of the target behavior(s).

At Autism Spectrum Therapies, the design of an ABA program is centered on the individual child’s and family’s goals and the behavior changes necessary to achieve those goals.  The child’s and family’s strengths are identified and leveraged in order to achieve success.  Maladaptive behavior that is harmful or interferes with learning is replaced with socially appropriate replacement behaviors through reinforcement-based interventions rather than with aversive procedures.  Instead of treatment occurring in sterile clinic rooms where the child is drilled with flashcards, intervention is conducted in the natural environment during play and family routines, involving multiple people to ensure generalization of skills in a meaningful way.

Behavior analysts treat the specific behaviors associated with a diagnosis of autism spectrum disorder (ASD) through interventions based on the principles of behavior.  Autism is not a behavior; it is a label used to describe the numerous behaviors with varying functions that fall into the diagnostic criteria of ASD.  ABA is not a therapy; it is the application of the science of human behavior.  Given the countless combinations of behavior that may meet diagnostic criteria for ASD and the number of interventions used to treat these behaviors within applied behavior analysis, it is of little surprise that “there is no one study that proves ABA works”.  Intervention outcomes in applied behavior analysis are most commonly measured through single-case research designs where the effects of individualized interventions on one or more behaviors of social significance are evaluated.

Who determines what behaviors are socially significant, if the interventions applied are acceptable, and what degree of behavior change is meaningful?  In other words, who determines social validity (Wolf, 1978)?  The issue of social validity is at the heart of the controversy over the use of ABA in the treatment of individuals with autism.  Society, including clients, caregivers, and other consumers, determines the social validity of behaviors targeted for intervention, procedures used, and outcomes obtained. Behavior analysts merely serve as the vehicle.

Social validity is subjective and society’s perceptions are constantly evolving.  While Lovaas’ initial research was initially received as groundbreaking, “normalization” of children with autism and the use of aversive procedures are now viewed by many as unacceptable.  As behavior analysts, we need to continually evaluate our proposed treatment goals and procedures.  We need to critically evaluate whether or not the behaviors targeted for intervention will actually improve the lives of our clients and that the treatment goals are in line with the client’s and family’s goals.  As a field, there is a need to communicate with our clients and their caregivers about the goals, procedures, and results.  Most importantly, we need to listen to what they say.

Wolf (1978) predicted that by placing importance on social validity, behavior analysts “will bring the consumer, that is society, into our science, soften our image, and make more sure our pursuit of social relevance” (p.207).  It seems as though many behavior analysts have forgotten the importance of social validity.  Rather than listening to criticisms of ABA with curiosity and compassion, behavior analysts have publicly gone on the defensive and simply explained why and how critics’ perceptions of applied behavior analysis are wrong.  In doing so, we are missing the point.  If applications of behavioral principles are not aimed at improving behaviors that clients, caregivers, and consumers view as socially significant or do not improve behaviors in ways which are meaningful, by definition, applied behavior analysis is not being practiced.

I propose we view the controversy surrounding the use of ABA in the treatment of individuals with autism as progress.  Controversy can serve as a catalyst for change.  Baer, Wolf, and Risley (1968) hypothesized that the dissemination of the applications of behavior analysis “may well lead to the widespread examination of these applications, their refinement, and eventually their replacement by better applications.  Better applications, it is hoped, will lead to a better state of society” (p. 91).  We have an opportunity and responsibility to respond to our clients, their caregivers, and consumers and advance our field in a way that embraces the changing views that celebrate diversity and individual differences.  We can hope that these advancements “lead to a better state of society”, but only society can make that determination.

Baer, D.M., Wolf, M.M., & Risley, T.R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1, 91-97.

Sulzer-Azaroff, B. & Mayer, R. (1991). Behavior analysis for lasting change. Fort Worth, TX: Holt, Reinhart & Winston, Inc.

Wolf, M.W. (1978). Social validity: The Case for Subjective Measurement or how applied behavior analysis is finding its heart. Journal of Applied Behavior Analysis, 11, 203-214.