amy

February 22, 2022

In this post, I’d like to talk about the relatively well-known movement for “autism awareness,” and give examples of how we (as both a society and within the field of behavior analysis) can take further steps toward autism acceptance as well as celebration of neurodiversity in general.

First, what is neurodiversity? According to our FAQ:

No one’s brain functions in the exact same way as another person’s brain. When some brains function in different ways and influence different needs, they’re considered neurodiverse. Like other facets of diversity, neurodiversity includes a broad, natural spectrum of human experience. Autism, ADHD, and learning disabilities are examples of neurodivergence.

The neurodiversity movement is deeply tied to the cause of disability rights in general, as well as to autistic self-advocacy. The neurodiversity movement believes that autism should be accepted, not merely acknowledged or understood. In the context of behavior analysis, our goal is not to eliminate autism, but rather to celebrate individuality while ensuring that day-to-day life accommodations are provided and advocated for.

I encourage all readers to review the Autistic Self Advocacy Network’s position statements for more information!

Autism Acceptance and Advocacy

Autism awareness can have different connotations depending on the context. Autism is often framed in a negative light, particularly when the focus is on the increasing incidence/diagnosis rates or looking for a “cure.” In that sense, being aware of autism can simply make people afraid and reinforce harmful stereotypes.

Instead, autism and neurodiversity should be accepted and celebrated, and this goal can be achieved through increased awareness and education by the neurodiverse community directly. World Autism Awareness Day is on April 2^nd of each year, and indeed April is World Autism Month. As an alternative, learn more about Autism Acceptance Month directly from autistic people.

At the same time, from the Autistic Science Person blog post What Autistic Advocacy Really Means, “autistic people are constantly put into a reductive box of ‘advocate’ instead of human being who has value and deserves to exist.” As a content warning, the linked blog post is about the harmful effects of having to constantly advocate for oneself without the support of allies.

It can be mentally and physically exhausting for someone who relies upon social and environmental accommodations to constantly have to fight for them, on top of the fact that self-advocacy is often perceived to be somehow greedy or demanding. As such, just as a white person is often better able to dismantle systemic white supremacy and it is safer for a cisgender person to call out transphobia, neurotypical people should step up to identify and end instances of ableism whenever possible. Keep in mind, though, that neurotypical allies should not presume to know best about what exactly is needed—it’s very important to always center and listen to the neurodiverse community itself.

Taking Action

It will take work to eliminate pervasive ableist practices. Celebration of neurodiversity in part means striving for equitable access to resources and opportunities for all. As just one small example of an action that can be taken, suggested in the blog post linked above, “consider 30 minutes a week of activism, or speaking up and platforming autistic voices, if your livelihood is benefited by autistic lives.” Other options include:

Making meetings and gatherings more accessible by providing speech-to-text captioning as subtitles and/or providing a note-taker
Providing easy access to spaces with minimal erratic stimuli like loud noises or flashing lights, and low unpredictability in general
Maintaining codes of conduct that explicitly encourage acceptance of atypical speech, movements, and social interactions
Encouraging a culture of consent by always providing choices and accepting “no” as an answer
Not requiring arbitrary social norms of, for example, making eye contact while speaking or keeping one’s hands motionless while seated at a desk

While symbolic gestures like the movement to “light it up blue” in April can be ways to indicate allyship, they should be supplemental to the pursuit of real changes. As the Autistic Self Advocacy Network states, the goal of real activism should be to help ensure “access to health care, education, and employment.” Resources for pursuing these actions (and many more) can be found in the toolkits provided here! There are also many talking points provided here, for conversations with governmental representatives or speaking out on social media.

Waypoints’ Mission and Vision

At Waypoints we recently formalized our company’s strategic plan, which in part included our mission and vision statements. It’s important to us that our day-to-day practices reflect our dedication to our company’s mission and vision, and that our values-based goals are measurable and allow for regular assessment of our alignment with that mission and vision.

To that end, we’re committed to prioritizing an equitable, inclusive approach in order to deliver the best outcomes related to independence and self-advocacy for clients and their families. We believe that neurodivergent people do not need to be “healed” or “fixed,” and that people are more important than profits. Some of our specific goals are:

Acting honestly and responsibly to promote ethical practices of our employees
Striving to increase the diversity of applicants, hires, and clientele served, as well as meet the needs of diverse employees and clients
Maintaining high-quality service delivery and social validity of intervention goals, procedures, and client outcomes

In the same way that we celebrate the rich tapestry of human life when it comes to race, culture, gender, sexuality, and so many other spectrums of experience and expression, we celebrate neurodiversity as well. If you’d like to talk more about how you can take action to be an ally in advocacy, or what we’re doing to reach our goals, please reach out to us at info@waypoints.life!

Get in Touch With Waypoints

Whether you’re looking for diagnostic testing, one-on-one in-home ABA therapy and skill-building resources, or simply want to learn more about our unique approach, please don’t hesitate to reach out! (We love getting mail.)

amy

February 9, 2022

In our very first blog post on the Waypoints website, I briefly wrote about “how ABA can help with dangerous behavior” and called out the fact that it is not up to the judgment of the clinician to determine what is and is not a “problem.”

In this post, I want to elaborate on that, while also providing specific examples of ways that we can help with addressing unwanted behaviors, including self-injurious behaviors like head banging, hair pulling, or skin picking, at the request of our clients themselves.

Is the Behavior Harmful or Not?

Part of the diagnostic criteria for autism spectrum disorder (ASD) includes “restricted, repetitive patterns of behavior, interests, or activities,” but these may or may not be problematic from the client’s point of view or that of their loved ones.

“Stereotyped or repetitive motor movements, use of objects, or speech” might include spinning a fidget toy in front of one’s eyes, stacking up blocks in a very particular way, or repeating favorite lines from a TV show. Between writing sentences of this blog post, I’m rubbing my hands together and tapping my feet. In my household, we constantly reference quotes from shows and Internet jokes to each other! These repetitive behaviors are in no way problematic, and may stand out on the part of an autistic person only because of differing contexts or frequency.

We would only suggest helping with reduction of such behaviors if the client actively wished to change these habits, or if they directly affected day-to-day safety. For example, high-intensity rocking back and forth while driving a car could be dangerous, and we could look into ways of meeting the needs served by that behavior in other, safer ways.

Some behaviors, though, more obviously run the risk of harm. Self-harm to the extent of bruising or breaking the skin can cause lasting physical damage, and aggression towards others is not only illegal in most contexts but can also prevent access to important resources like educational environments and assisted living supports. Even behaviors that don’t cause direct physical harm, like intense tantrums or verbal abuse, can still prevent important needs from being met in day-to-day life and lead to social stigmatization and ostracization.

It’s important to keep in mind that such behaviors are not inherent or exclusive to someone with a diagnosis of autism. Neurotypical people obviously harm themselves and aggress against others as well.

The prevalence of these behaviors, however, can be influenced by other diagnostic criteria for autism: “hyper- or hypo-reactivity to sensory input” and “deficits in verbal communicative behaviors used for social interaction.” If an autistic person is experiencing something painful or otherwise aversive, and is unable to communicate that clearly in order to get help, it makes sense that behavior would escalate. All behavior happens for a reason! Figuring out those reasons can help prevent the need for them to occur in the first place, as well as get those needs met more effectively.

The Causes of Behavior

From the behavior-analytic perspective, behavior (whether potentially harmful or not) is the result of environmental influences, not something inherent to an individual.

For example, we would never say that someone picks at their skin because they “lack willpower” or “don’t care about their well-being.” Clearly, that repetitive behavior is fulfilling a need. A behavior-analytic assessment would then help us define what that need is, what the consequences of that behavior are for the client, and why those consequences are causing the behavior to continue.

Reinforcement is a consequence that increases the future probability of behavior. Reinforcement can be considered positive if the behavior produces something desirable, or negative if it removes something unpleasant. It can also be automatic in the sense of the behavior itself producing the consequence, or social in the sense of someone else in the environment providing a consequence.

In the context of skin-picking, here are some potential kinds of reinforcement:

Automatic positive—the physical sensation of scratching the skin. What may be painful for one person could be pleasant to another!
Automatic negative—removing a distractingly rough patch of skin, or relieving another kind of pain by focusing on this stimulation.
Social positive—someone providing attention or showing concern when this behavior is performed.
Social negative—someone removing a demand, e.g., “oh, I can see that this is stressing you out, we don’t have to work on this right now!”

On the other side of the coin, we have antecedents—things that happen before the behavior occurs that might make it more or less likely. There are many kinds of antecedents analyzed within the science of behavior analysis, but for now I’ll focus on what are called motivating operations. These are essentially the “needs” that a behavior fulfills.

There are two broad categories of motivating operations which increase or decrease motivation to engage in a behavior. The former category is relevant here—they are called establishing operations.

The absence of pleasant physical stimulation would establish the value of automatic positive reinforcement.
A rough patch of skin or other aversive stimulation would establish the value of removing that stimulation in some way.
The absence of attention would establish the value of getting it in the form of concern, help with a problem, etc.
A difficult demand or task would establish the value of escaping from it or making it easier in some way.

Behavior Reduction Techniques

In a nutshell, if a client wishes to work toward reducing the occurrence of a challenging behavior that they engage in, we can help change the antecedents and/or the consequences of the behavior, as well as make sure that reinforcing consequences follow other, preferable behaviors. Continuing to work with the same example from above…

If skin-picking is maintained by automatic positive reinforcement, we could make sure that there are many other options to access pleasant physical stimulation, such as a bristly brush or a pumice stone. We might also suggest that the client keep their nails trimmed short, so that those safer alternatives are actually more pleasant than picking would be.
If it’s maintained by automatic negative reinforcement, we could help to teach skincare routines to prevent and reduce rough patches ahead of time. Another option would be to start engaging in the habit of applying lotion or even just putting on a long-sleeved shirt when a patch of skin becomes distracting, instead of picking.
If it’s maintained by social positive reinforcement, we would work with caregivers and others in the environment to increase the amount of engagement on a day-to-day basis, and also potentially teach the client alternate ways to ask for help or comfort.
If it’s maintained by social negative reinforcement, we would again work with others on ways to present demands in less overwhelming ways and/or with additional support offered, and would also likely teach the client methods of asking for assistance and/or self-soothe in safer ways.

If you read those examples and think to yourself that they wouldn’t work for you or your loved one, keep in mind that no one intervention is a perfect fit for everyone! Every behavior intervention plan is extremely individualized to the causes of a behavior, as well as “client preferences, supporting environments, risks, constraints, and social validity.”

“Balancing the Right to Habilitation with the Right to Personal Liberties”

To reiterate, it is not the place of a behavior analyst to judge what someone should or shouldn’t do. All interventions should be informed by the client, first and foremost.

A classic article within the field of behavior analysis emphasizes exactly that: Balancing the Right to Habilitation with the Right to Personal Liberties: The Rights of People with Developmental Disabilities to Eat Too Many Doughnuts and Take a Nap. 

Who among us doesn’t engage in behaviors that have the chance of causing harm to ourselves in one way or another? I would not take kindly to someone coming into my life trying to change my diet uninvited, but I sought out the services of a personal trainer when I wanted help learning how to engage in new exercises safely. I chose the example of skin-picking to discuss in this blog because I personally struggle with the bad habit of picking at my cuticles, and over the years I’ve managed to intervene on that successfully with the science of behavior analysis.

At Waypoints, we want to clearly communicate what supportive and skill-building resources we can offer, but will never presume to know best about what behaviors should be changed in the first place. If you’d like to brainstorm together about what behavior changes might be possible and how, I hope you’ll reach out to us at info@waypoints.life!

Get in Touch With Waypoints

amy

January 25, 2022

Many caregivers and clients pursuing applied behavior analysis (ABA) services worry about how much time might need to be spent in sessions, especially considering that these sessions are often scheduled in addition to time already spent in school and potentially other therapeutic settings.

It’s important to understand that, while ABA does often require a significant time commitment for both clients and caregivers alike, there’s no one perfect amount that applies to everyone. Some will benefit from more support in pursuit of reaching their goals, others will require less, and the ideal number of weekly hours will likely change over time. Recommendations are made based on factors such as the age of the client, the kinds of goals they’re interested in working toward, and how much time they realistically have to devote to ABA sessions.

Part II, Section 3 of the Practice Guidelines for Healthcare Funders and Managers provided by the Council of Autism Service Providers, starting on page 13 here, suggests models of hours recommendations based on either “focused” or “comprehensive” ABA services. Let’s take a closer look at each.

Focused ABA

Focused ABA typically includes 10-25 hours per week, and is considered appropriate for working on a limited number of behavioral targets or key functional skills.

Key functional skills may include areas such as social communication, task follow-through, self-care, safety, and independent leisure (Virués-Ortega, 2010). Higher-intensity focused intervention may be warranted if the client’s or others’ health or safety are at risk, or if quality of life is inhibited.

Other priorities during focused intervention may include adaptive, social, or functional skills that allow for maintained health, social inclusion, and increased independence (e.g., toileting, dressing, feeding, and compliance with medical procedures).

Comprehensive ABA

Beyond the scope of focused ABA, comprehensive ABA requires more intensive treatment, defined as 26-40 hours per week of one-on-one support (Cohen et al., 2006; Eikeseth et al., 2002; Eldevik et al., 2009).

Comprehensive ABA may be more appropriate for clients who are struggling with multiple different developmental domains (e.g., cognitive, communicative, social, emotional, adaptive functioning). Addressing environmental factors influencing highly prevalent severe or dangerous behaviors (such as aggression, self-injury, or property destruction) is also typically the focus of intervention.

How Long Will My Child Need ABA?

It’s difficult to estimate the overall duration of an ABA program. Specific discrete goals might be met to a client’s satisfaction within a single year or less, or services might evolve over time and be maintained across many phases of a client’s life as they begin school, plan for college, begin their first job, or pursue independent living. Each individual client has their own personal needs, goals, and preferences.

Other Guidelines for Hours Recommendations

While the general categorization of ABA services into focused or comprehensive plans is helpful, assessing medical necessity based on health insurance providers’ requirements and recommending a specific number of weekly hours of ABA therapy can be tricky.

According to the Behavior Analyst Certification Board, hours recommendations should be based on what is medically necessary for each individual client. The problem is that there is no universal formula to determine what is “necessary,” since every client, environment, and situation is unique. Strengths, preferences, needs, and environmental circumstances of each individual client and their caregivers all factor into the decision.

Decision-making should not be based on the duration of previous ABA services, nor solely based on the client’s age (Ivy & Schreck, 2016). At the same time, hours should not be restricted solely based on age, cognitive level, or co-occurring conditions (Wong et al., 2015).

Agencies like insurance companies, which approve coverage of costs associated with ABA services, often have somewhat more specific guidelines. In Ottawa County, Michigan—where Waypoints primarily operates—those guidelines are as follows:

Ottawa County Medicaid Treatment Hours Guidelines
Treatment Recommendation	Age Range	Guidelines
10-20 hours	1-21 years of age	– Enrolled in full-time school – Social, communicative, restrictive/repetitive defects – Low to no challenging behaviors
25+	1-21 years of age	– Enrolled in part-time school or does not attend school
30-35 hours	Typically for 1-5 years of age	– Enrolled in part-time school or does not attend school – Significant or dangerous challenging behaviors – Significant communication delays
35+ hours	Typically for 2-5 years of age	– Must have significant cognitive impairments/delays and/or demonstrate significant or dangerous challenging behaviors  – Enrolled in part-time school or does not attend school

As noted above, one common concern when determining an appropriate amount of time spent in ABA therapy sessions per week is the intensity of even a “focused” program (as opposed to “comprehensive”). Even 20 hours per week is a part-time job!

As such, it’s very important to balance ABA services with everything else that is going on in a client’s life. Children typically spend 30 to 35 hours per week in school, so a comparable level of ABA services could be appropriate if the client is not in school full time. Alternately, if a client is attending school full time, an ABA service provider could accompany the child at school to provide additional support.

As Kristen Bottema-Beutel and Georgia Pavlopoulou note in their recent critique of certain practices within the field of ABA, “primary studies and quality-controlled meta-analyses … have not found a relationship between intervention intensity and child outcomes (Choi et al., 2021; Rogers et al., 2021; Sandbank et al., 2021).” In other words, a high number of hours per week does not inherently mean that a client’s treatment goals will be met more efficiently, and a lower number of recommended hours does not necessarily prevent achievement of clients’ goals.

That being said, there is a point at which too little time spent working on a behavior-analytic program will render it ineffective, simply because of limited learning opportunities and a lack of consistency. The efficacy of each program and the ideal amount of time spent working on it must be individually assessed and monitored by the supervising behavior analyst, and discussed in an ongoing manner with the client and their caregivers.

Recommended Hours at Waypoints

All of the above information is included in Waypoints’ Treatment Hours Recommendation Guidelines provided to all employed clinicians, formalized as part of our process of pursuing accreditation from the Behavioral Health Center of Excellence.

One of the accreditation standards is that “the organization provides treatment recommendations by relying on best practices such as decision models, research, and professional judgment,” and every company providing ABA services should have clear policies and procedures in alignment with that standard.

While we’re a young company that has only been in operation since early 2021, I can report that we’ve recommended an average of 20 hours per week for our clients, with a range between 18 and 25. Part of our initial assessment process includes documentation of whether clients and caregivers agree to our recommended number of hours per week, and if not, the program plan is adjusted before authorization from an insurance provider is sought.

If you’re interested in pursuing ABA services and would like to get an idea of the level of services that might be appropriate, I hope you’ll reach out to us at info@waypoints.life!

Get in Touch With Waypoints

amy

January 11, 2022

It is vitally important that anyone seeking support services for themselves or loved ones do their due diligence in investigating not only whether those services are truly effective, but also whether or not that apparent effectiveness is also associated with potential harm.

It’s highly likely that anyone conducting a Google search on topics related to ABA therapy will turn up results showing the role it has played in the abuse of disabled persons. In this blog post, I will openly acknowledge and condemn the ways in which procedures based on ABA can and have caused harm.

That said, I will also explain how the science of behavior analysis can (and should always) be used safely and ethically, and affirm Waypoints’ commitment to empowering and supporting autistic children in a way that’s safe, respectful, empathetic, and fully celebrates neurodiversity.

is aba therapy harmful — Dear Dr. Israel, I am writing to you, once again, to express my feelings of gratitude to you and your staff at JRC. It seems impossible to map the many ways our lives have improved since Danielle has entered JRC in March 2000. At that time I felt that I may have lost my sweet girl to mental illness. My little family in NYC was smashed along with any routine lifestyle Danielle and I had built. Those dark days might have continued if not for JRC intervention, or more aptly put, JRC opportunity. Today, my daughter Danielle is working toward getting her High School Diploma as well as her driver’s license. Danielle enthusiastically wants to attend College, ASAP!!!!! She is also off all medication, which quite honestly I thought impossible. She enjoys her new weekend receptionist job, as well as all her ‘freedoms’ which she has worked so hard to earn. I know that no program, or person, is infallible, but I also know that JRC has given Danielle back her life, as well as a real future. It is with great affection and equal respect, that I thank you, Dr. Israel, Dr. Paisley, Mr. Assalone, Ms. Debbie Ann Hibbert, Miss St. Louis, Miss English, Miss Allison Jenelle, Ms. Henson, Miss Catarina, Miss Burns, everyone in Monitoring, all of Danielle’s previous caseworkers, and all of the staff at Lorusso and Turnpike during Danielle’s stay there. I just felt that I needed to take the time to share these thoughts with you. Sincerely, Laurie Robinson

One Shameful Example: The Graduated Electronic Decelerator

As noted on our Frequently Asked Questions page, practitioners associating themselves with ABA have caused undeniable harm to the clients they’ve claimed to serve, and at Waypoints we know it would be dismissive of that harm to simply hide behind the claim that “not all ABA is like that.” Indeed, when I was in graduate school studying behavior analysis, we as students were actually taught that in some extreme cases apparent harm was justified.

As a bit of a digital hoarder, I have a PowerPoint slideshow from one of my courses pulled up while I write this blog post. In it, a series of slides explains that one agency developed a Graduated Electronic Decelerator (GED) device to be used with clients who engaged in extremely dangerous and harmful behaviors, and for whom other less-intrusive interventions such as differential reinforcement had not been effective. This device provided an electric shock meant to punish and discourage ostensibly dangerous behaviors.

We were reassured that, despite repeated attempts to take the agency to court and end the use of these practices, actually the use of the GED by ABA therapists was fully safe and ethical:

“After an extended and appropriate baseline, an official recommendation to use the GED would be made. A parent or legal guardian had to first agree. Then a physician (MD) would have to sign-off that the procedure would be safe. Then the proposal went through several layers of Human Rights committees, internal and external. If all of these entities approved usage, then it went to a Probate Judge for final approval. Staff persons have to test the device on themselves before each use, and it can be used only for the target behavior. The JRC also has video monitoring in all classrooms and all group homes to monitor all behavior at these sites, including any applications of the GED.”

We were shown graphs of data highlighting the efficacy of the GED, as well as positive testimonials from caregivers who had approved its use. These were held up joyously as the gold standard of social validity—people willing to testify in court on behalf of the interventions being used!

In the time since earning my degree, I’ve learned much more about the danger of misuse of procedures like these, both in theory and in actuality. Even if such procedures could be justified in extreme circumstances, those circumstances are simply not the only cases in which they’ve been used. The GED has not been used exclusively for intervention upon dangerous behavior, but also contingent upon simple noncompliance and stereotyped movements and vocalizations. Shocks have been applied more than prescribed, and at higher magnitudes.

The risk of abuse of punishment procedures is well-documented, both in our empirical peer-reviewed literature as well as in real-life cases in which real, lasting harm was done. Scrutiny of agencies using such procedures continues to this day, but the procedures remain in use. In July of 2021, an FDA ban of the use of shock-based intervention was overturned.

Most importantly, I’ve learned to prioritize the voices of the disabled community with whom procedures like these are being used. The Autistic Self Advocacy Network has written extensively in denouncement of procedures based upon aversive control, as has ADAPT.

The Importance of Affirming Neurodiversity

The GED is an extreme example of the potential for ABA to be harmful. It’s probably fairly obvious that procedures like shock, restraint, and seclusion are high-risk. But it’s also important to keep in mind that any focus on changing behavior to fit societal norms—rather than changing the environment to accommodate individuals’ needs—can be harmful.

While the Ethics Code for Behavior Analysts emphasizes “respecting and actively promoting clients’ self-determination,” some ABA providers set goals and design interventions without the client’s direct input or consent. Specifically, they may prioritize abject compliance with authority and reduction of atypical social or motor behaviors (like stimming). Even procedures based upon differential reinforcement (rather than punishment) can be highly restrictive, if the goal is for an autistic individual’s self-expression and natural diversity to be dampened.

No one’s brain functions in the exact same way as another person’s brain, and this is referred to as neurodiversity. Like other facets of diversity, neurodiversity includes a broad, natural spectrum of human experience. Autism spectrum disorder (ASD), ADHD, and learning disabilities are examples of neurodivergence.

The neurodiversity movement is deeply tied to the cause of disability rights in general, as well as to autistic self-advocacy. The neurodiversity movement believes that autism should be accepted, not merely acknowledged or understood. In the context of behavior analysis, our goal at Waypoints is not to eliminate autism, but rather to celebrate individuality while ensuring that day-to-day life accommodations are provided and advocated for.

In a presentation titled “Make Yourself Uncomfortable: Navigating Autistic and Allistic Social Communication Differences and Encouraging Authenticity,” autistic advocate Madi Holcomb shared potential outcomes of the enforcement of social norms in neurodiverse communities:

Compensation—studying neurotypical social cues in order to incorporate them.
Masking—daily practice of pretending to be neurotypical and hiding autistic traits.
Hypervigilance—anxiety about facial expressions, gestures, etc. because of the impression that one’s own social instincts can’t be trusted.
Assimilation—buy-in to social norms with the perspective that you HAVE to hide.

In the self-assessment of these outcomes, high scores are correlated with depression and poor well-being.

In addition to asserting that our practices at Waypoints will never include procedures like seclusion or restraint, nor behavior reduction unless there is a clear risk of danger to oneself or others, we will do our part to “advocate by platforming the disabled and demanding their human rights, dismantle systemic ableism within the field, and rebuild trust and truly helpful services.” 

Progressive ABA: A Better Way Forward

This blog post by C. L. Lynch of NeuroClastic posits that “the problem with ABA is that it addresses the child’s behaviors, not the child’s needs.”

As someone who has studied and practiced the science of behavior analysis for more than 15 years, it breaks my heart that the application of “behavioral therapy” based on that science has come to that.

Indeed, from the scientific perspective, it should be exactly the opposite—all behavior is a function of environmental needs. Any behaviors taught or changed in the course of ABA services should, above all, fulfill the client’s needs. While I again will assert that I cannot and will not deny that ABA has often been practiced in the ways described by Lynch, it doesn’t have to be.

A push for progressive and trauma-informed ABA services has been strengthening in recent years. As just one example, Gregory Hanley emphasizes the importance of assent and prioritization of clients being happy, relaxed, and engaged (what he calls HRE) during sessions. If they are not, or if they withdraw assent, we aren’t doing our jobs correctly. Signals that ABA services are compassionate could include:

Starting by asking questions (e.g., interviewing caregivers and clients, as opposed to standing apart and simply observing and taking notes).
Creating a context in which the probability of dangerous behavior is near-zero (as opposed to trying to observe a direct baseline level of “problem” behavior by deliberately evoking/occasioning it).
Never justifying the means by the ends and emphasizing values over procedures; doing what is safest in the moment.
Empowering the learner. While we do introduce more challenging situations and unpredictability as part of services, we immediately and empathetically acknowledge resistance. It’s more important to allow clients to momentarily escape, self-soothe, etc. in order to teach them that they never need to escalate to self-injury, tantrums, or aggression.
Shaping skills including communication, toleration, and cooperation. The main drivers of behavior changes should be motivation, prompts, and contextually relevant and individualized reinforcement, not aversive control.

It is our hope at Waypoints that we can embody these values. While I quibble a bit with some terminology like “televisibility”—we push to provide ethical services because it’s the right thing to do, not so that it looks better in the public eye—this pledge is largely representative of our goals.

Evaluations and Recommendations, Across the Field of ABA

In closing, I want to highlight a recent publication by Justin Leaf and colleagues reviewing concerns about ABA programs, evaluating the validity of those concerns, and proposing methods of addressing those concerns.

Kristen Bottema-Beutel and Georgia Pavlopoulou have since responded to Leaf and colleagues’ recommendations by arguing that they “only superficially engage with these important issues, and fall short of supporting neurodiversity, despite their intention to do so.”

As a field, we have a long way to go when it comes to clearly denouncing harmful practices, taking action to stop their use, and strongly advocating for ethical application of the science of behavior analysis. It is my hope that we can continue to have these conversations in good faith, and in full transparency with those that we make careers out of supporting.

To that end, if you have questions or concerns about ABA or any of the materials linked to in this post, we’d love to chat with you at info@waypoints.life.

Get in Touch With Waypoints

amy

November 30, 2021

What is the purpose of ABA services?

In previous blog posts, I’ve explained Waypoints’ perspective that autism is not something that can (or should) be cured, and as such that we don’t think of “ABA therapy” as a true type of therapy at all. Instead, ABA (applied behavior analysis) consists of application of behavior-analytic principles in order to aid in learning new skills – communication skills, social skills, daily living skills, etc.

That can take the form of assisting skill acquisition directly, and also potentially habit reduction in cases of behaviors that are of immediate danger to clients or others.

Socially Significant Behavior

When the Journal of Applied Behavior Analysis made its debut in the 1960s, consideration went into what set it apart from the Journal of Experimental Analysis of Behavior. This also reflected differentiation between applied practice vs. experimental research in general. As Montrose Wolf reported in his 1978 recounting, the purpose was “the publication of applications of the analysis of behavior to problems of social importance” (emphasis added). But how is social importance judged?

The term social importance or significance can sometimes be misapplied to behavioral changes that are considered the most “socially acceptable.” However, the term social significance actually refers to the degree to which the behavioral changes we’re targeting benefit and are valued by the clients themselves.

The first A of ABA stands for applied, and this is also one of the seven critical “dimensions” of the field of behavior analysis as described in a seminal article by Don Baer and colleagues in 1968. The applied characteristic of ABA requires that our procedures target behaviors that will result in improved quality of life for the individuals we’re serving.

Wolf proposed evaluation of the significance of programming goals, the appropriateness of procedures used, and also the importance of the ultimate outcomes of the programming – and that these aspects of social validity should be evaluated by clients directly, not by those designing and implementing the procedures.

Starting Points for Skill Building

Initial shorter-term goals of skill development are sometimes thought of as behavioral cusps and pivotal behaviors.

A behavioral cusp is a skill that allows access to new environments and sources of reinforcement – for example, learning to communicate or use public transportation. A pivotal behavior is a skill that, when mastered, also influences many other more complex skills and can generalize across diverse situations – for example, fine motor skills or asking for help.

In their textbook Applied Behavior Analysis, John Cooper and colleagues provide a useful worksheet for collaboration with clients in identifying what skills would be of the highest importance to work on. For example, “is this behavior a necessary prerequisite for another useful skill?” Prerequisite skills, also sometimes called component skills, can build toward more complex composite skills. Individual fine motor skills might seem relatively insignificant at first glance, but working on learning to pinch, point, and pull can lead to the ability to dress oneself, hold a pencil, or use a touchscreen.

Another question to consider is “will this behavior increase access to environments in which other important behaviors can be learned and used?” Learner readiness skills, for example, could allow for enrollment in and greater benefit from general education classrooms. Learning to type and safely use the internet opens up entire worlds of resources and socialization.

Every learner’s goals for skill development will be different, and will necessitate a different starting point and benefit from individualized instruction!

Skill-Building Strategies

As I’ve hinted at in this post, a common instructional tactic in behavior-analytic services is to start by teaching simple component skills that can then recombine into numerous, more complex composite skills.

Instruction can take place in a more structured format, as well as throughout the natural environment. Procedures like shaping allow for gradual improvement of the “form” of skills, like learning to effectively swing a baseball bat or chop vegetables safely. Chaining procedures help to bring individual skills together into useful activities, like self-care routines or driving a car.

These strategies, though, primarily address skill deficits related to simply not yet learning how to engage in certain behaviors. Another strategy is to make adjustments to the environment, both to increase the number of learning opportunities and to accommodate learning in different ways. Materials used during skill development might be visual, auditory, or tactile, depending on the learner’s needs, and other tools like schedules or checklists could be helpful as well.

Behavior-analytic services also support learning by aiding in motivation – for example, by clarifying clients’ values and talking through rationale for goals and desired outcomes. It’s also critical to ensure that reinforcement is available in the day-to-day environment, in the sense that caregivers, teachers, and others actively cheer on and support clients in working toward their goals.

Supporting Learning at Home

To that end, families of clients absolutely can and should get involved in the skill-building process! Caregiver trainings to use behavior-analytic instructional methods are available through Waypoints, and we also strongly encourage clients and their families to chat with their Waypoints team to brainstorm ways to carry over skill-building activities to maintain and generalize accomplishments at home, school, and other environments.

This might take the form of providing opportunities to practice skills that are being worked on, but also making similar environmental adjustments used during ABA sessions (such as using visual schedules or avoiding sensory sensitivities) throughout day-to-day life.

If you’re receiving services through Waypoints already, I hope that you’ll reach out to discuss options to enhance skill-building outside of sessions! And if you’re curious about how learning supports like those discussed here could aid in your (or a loved one’s) progress towards a goal, we’d love to hear from you at info@waypoints.life.

Get in Touch With Waypoints

amy

November 9, 2021

Can autism spectrum disorder be cured? Waypoints offers behavior-analytic services based on applied behavior analysis (ABA), often in support of autistic clients, and it’s important to be clear about the fact that those services cannot cure autism.

With that being said, a cure for autism is not something that we’re seeking in the first place.

The reasons for that require consideration of what autism is, as well as what “curing” something entails and what the implications of a cure would be in this context.

What is Autism Spectrum Disorder (ASD)?

First, what is autism?

Straight from the Diagnostic and Statistical Manual of Mental Disorders (DSM), autism spectrum disorder (ASD) is a developmental disability associated with certain social, emotional, and communicative differences in comparison with neurotypical peers. Autism is often diagnosed in very young children, but can absolutely be identified in older children, adolescents, and adults as well.

Because of many barriers to diagnostic services, as well as the potential for societal stigma associated with a documented diagnosis, it’s important to note that someone can determine that they are autistic without receiving a formal diagnosis.

An autism diagnosis is based on the individual’s behavior, not any kind of medical test. This hints at the fact that the causes of autism remain largely unknown.

What Are Some of the Common Signs of Autism?

Signs that diagnosticians look for primarily include differences in social and communicative behaviors, which in turn seem to be influenced by differences in how learning occurs in the first place.

For example, an autistic person might be less likely to engage in joint attention and social referencing:

Joint attention refers to a learner following the gaze of another individual to something in the environment
Social referencing refers to learning through observation of others.

One implication of these differences is that someone who is autistic may be less likely to be affected by social norms in the way that their neurotypical peers might be.

Another common aspect of autism is differences in how stimuli in the environment (like sounds, textures, and scents) are perceived. These differences can be associated with repetitive behaviors (often called “stims”) that produce pleasing sensations, the same way that one might enjoy a big satisfying stretch or cuddling up in a warm fluffy blanket.

On the other hand, some stimuli perceived as neutral at worst by neurotypical people might feel deeply unpleasant to someone with autism. Flashing lights or fluctuating temperatures, for example, could be very distressing. Sensory sensitivities, both positive and negative, vary widely from individual to individual.

These are just a couple of examples of how an autistic person might experience the world differently, and how those differences can affect behavior. The Autistic Self Advocacy Network (ASAN) provides much more information here, and I can’t recommend their resources enough.

What Does “Curing” Something Imply?

In order to “cure” something, it’s necessary to know its cause, also known in the medical world as its “etiology.”

As I noted above, the causes of autism are as of yet unclear beyond “environmental, biologic, and genetic factors.” Many false causes of autism, including chemicals present in some vaccinations, have been disproven time and time again.

As such, autism cannot be cured in the way that antibiotics cure a disease caused by bacteria. At most, symptoms of autism can be intervened upon, with the active assent of the autistic person.

I encourage readers to consider this question: if autism could be cured, what exactly would be the goal, and why? Autism in and of itself is not physically dangerous or harmful. It simply creates a different way of experiencing and interacting with the world.

In this post, originally an address to Emory University, Ari Ne’eman provides a lengthy but poignant account of serious concerns with the pursuit of curing autism, as well as the value of the neurodiversity movement and a social (as opposed to medical) model of disability in general.

Finding a Different Path Forward

Earlier I brought up the idea that a preference for less-social learning methods may mean that social norms have less of an influence over an autistic person’s behavior. This is not necessarily a bad thing! However, limitations to observational learning can also make it more difficult to learn social skills, daily living skills, independence, and self-advocacy.

Autism can be associated with difficulty with communication and social interactions, which can in turn lead to trouble with getting basic needs met. However, that can be addressed through skill development. Importantly, these might not necessarily be the exact skills that neurotypical peers might engage in.

Adjustments to the environment and accessibility aids are also fantastic. Someone who is hard of hearing, for example, might use a hearing aid in order to more easily engage with the world. In the same way, an autistic person might use an augmentative and alternative communication (AAC) device.

While this article by Ogden Lindsley includes some very outdated language regarding disability, it makes the excellent point that “it is modern science’s ability to design suitable environments” that is at fault for many limitations to self-care and self-advocacy. Lindsley proposes three basic strategies for supporting people with disabilities: “(1) construction of prosthetic devices; (2) prosthetic training; and (3) construction of prosthetic environments.” In other words, the environment and other support systems should be changed, not the person.

Another common concern that is raised regarding autism is self-injurious behavior (SIB) and aggression, but it’s important to keep in mind that SIB and aggression are not inherent nor exclusive to a diagnosis of autism, and not all people with autism engage in self-injury or other challenging behaviors. All behavior happens for a reason, and behaviors that pose a danger to oneself or others may occur due to a lack of other ways to get one’s needs met.

For example, someone with a painful earache who is unable to verbally communicate what they’re feeling may experience brief relief by hitting their head; someone who is unable to independently leave a hot, crowded space may scream, hit, or kick if they’ve learned that that’s a reliable way to get taken home. Again, these concerns can be resolved through development of self-help and communication skills, as well as preemptive accommodations in the environment to support each individual’s needs.

Skill Development at Waypoints

To reiterate, our goal at Waypoints will never be to cure or otherwise eliminate autism, nor arbitrarily enforce social norms, nor pursue behavioral interventions only for the sake of fitting in with social norms. We stand with the neurodiversity movement in celebrating the individuality of every person, and working to change the world around us to support everyone’s health and happiness.

Even in cases in which the individual is engaging in self-injury or other dangerous behaviors, the methods of intervention should be based on skill development and adaptations to the environment. And we can help with that!

As always, if you’d like to look into options for diagnosis or behavior-analytic services, or just chat more about this topic, please reach out to us at info@waypoints.life. We’d love to hear from you.

amy

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