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Neurodiversity – Origins and Impact

By Katherine Johnson. M.S., BCBA
Senior Director of Partnerships, LEARN Behavioral

Judy Singer is an autistic Australian social scientist. In the 1990’s, seeing echoes of her mother’s struggles in herself and her own daughter, it occurred to Singer that this common thread pointed to the possibility that their differences were actually neurological traits. They were having a first-hand experience of that part of biodiversity that is the natural range of variations in brain functioning: she coined it neurodiversity

The neurodiversity paradigm considers all brains to be normal; brain differences are simply the neurological counterpart to genetic variations in height, eye color, or hair color. Scientists consider such variation in biological traits to be essential to the health of individual populations and entire ecosystems.  When viewing autism through the lens of neurodiversity, it comes to light that some of the individual differences that have been assumed to need remediation in the past, may actually be important in helping society as a whole make progress through new and different ways of thinking. 

The concept of neurodiversity has been enthusiastically embraced by that portion of the autistic community who are able to speak, as it promises to alleviate some of the bias and discrimination they have experienced. Their common message? Specific words and types of support can have unintended negative effects, causing them to feel inferior, powerless, misunderstood.  

Arising from these negative experiences is a more widespread understanding of how words and actions affect the private events (thoughts and feelings) of people on the spectrum. ABA practitioners are charged by the BACB Ethical Code to “treat others with compassion, dignity, and respect,” and the voices of the neurodivergent convey essential information about ways to do this. 

LEARN’s Response

LEARN’s neurodiversity initiative is a direct result of listening to the insights of autistic folks who are able to express their experiences of living in a society that was built for neurotypical people. 

  • Development of a Person-Centered ABA workgroup – Learn Leadership charged a workgroup of clinical leaders with the task of supporting clinicians in reaching our vision for a neurodiversity-informed, Person-Centered ABA approach. The workgroup includes clinicians, supervisors, and clinical development individuals. 

  • Forming of a Neurodivergent Advisory Committee – The first action of the Person-Centered ABA workgroup was to formalize a process for getting input from the neurodivergent community.  The committee is made up of neurodivergent clinicians and non-clinicians who work at LEARN; they meet regularly to review and give feedback on articles, trainings, and other materials, and are compensated for their role on the committee.      

  • Co-creation of the Values Statement – The Person-Centered Workgroup and the Neurodivergent Advisory Committee co-created a values statement, entitled “LEARN Values Neurodiversity.” The statement was written in order to express our position to our clinicians and also guide subsequent actions by the Person-Centered ABA Workgroup. It was presented at an internal training and is available on our website. 
  • Communication – Shifting the mindset of a large organization doesn’t happen overnight. In order to connect regularly with our clinicians on person-centered topics, a portion of our monthly video message to clinicians includes information about subjects related to neurodiversity, such as ableism, assent, and including client input in treatment planning. It’s important that staff are not only hearing this information but also discussing it, so each month, clinical teams engage in discussions with their colleagues on these topics. 

  • Assent Leadership Workgroup – With the addition of “assent” to the BACB ethical code and the subject’s importance to treating our clients with compassion, dignity, and respect, LEARN is offering “guided exploration” groups in assent that meet regularly for four months. The intention is to create local leaders in Assent-Based Programming throughout our network.   

  • Treatment Plan Evaluations – Our Treatment Plan Evaluation team works hard to review clinicians’ clinical work through the permanent product of their treatment plans. These reviewers have been given resources to help them identify Person-Centered practices to promote in their feedback.

  • New Hire Training – In the 2022 revision of our New Hire Training for behavior technicians, we are explicitly teaching them about neurodiversity and assent, as well as ensuring that language throughout is respectful, and that programming examples fit Learn’s conception of Person-Centered ABA.
     
  • Autistic Voices – Throughout this process, we are having an increasing number of autistic guests on our podcast and making it a regular practice to interview autistic folks for guest blog posts.  These are ways that we can listen to autistic voices ourselves and also use our resources to center those voices in the ongoing cultural conversation.

As ABA practitioners, we have always cared about our clients – helping and supporting others is our entire reason for being. In the initial years of our still-young field, that care was expressed by taking a singular approach: teaching skills to help them function in our society. As autistic self-advocates find more channels by which to make their voices heard, the themes that are emerging tell us that there is more to supporting this community than just teaching skills. For instance, using words that validate our clients’ identities and sense of self is important. We can create a positive emotional experience for the people we support during the learning process – by listening to them and giving them agency. And most importantly: where success measures are concerned, our clients’ quality of life should be central.

LEARN is listening. 

To learn more about neurodiversity, check out our other blogs “Voices for All: Ash Franks” and “Neurodiversity: What It Means, Why It Matters.”

Addressing Health Equity in ABA Treatment Part I: A Black Mother’s Experience

LEARN is committed to fostering a culture that embraces what makes us each unique—be it race, ethnicity, gender/gender identity, sexual orientation, religion, national origin, disabilities/abilities, or socioeconomic background. LEARN aims to acknowledge the lived experiences and diversity of perspectives of our staff and welcomes our teammates to share their story to help foster conversations about diversity, equity and inclusion in our communities.

By: Asia Johnson, BCaBA, Autism Spectrum Therapies

Asia Johnson (she, her, hers) is an Assistant Behavior Analyst in AST’s greater New Orleans, Louisiana region and the co-chair of LEARN Behavioral’s DEI Employee Resource Group.

Walking on her tiptoes was interesting but cute. Rocking back and forwards raised my eyebrows. But the repetitive “I’m going to stop, I’m going to stop,” felt like weights pulling on my heart.

I had never heard the word autistic before. Little did I know that in a matter of months, the diagnosis of autism spectrum disorder (ASD) would be commonplace. I would sit in my living room with tears in my eyes and my phone in hand watching my daughter attempt to self-regulate. I felt helpless. For days this cycle would continue, leaving me uncertain if I was a good mother. I revisited each trimester of my pregnancy, actively attempting to re-evaluate anything I may have done wrong.

A mom of two with limited resources but a Medicaid card ready to go, I assumed it would be a walk in the park to get my daughter evaluated. I naively thought they would immediately tell me what was causing the concerns and provide tools to assist her. I imagined myself falling backwards into a hammock free from the weight of the world only to fall through the very net I assumed would hold me up. I was told there would be a nine-month wait before I’d receive a call about the evaluation. I was devasted. Even more, devasted to learn that if I had private insurance, I could have achieved a diagnosis in a few weeks.

As a Black woman who experienced medical malpractice during my pregnancies, I was on edge. I wasn’t sure I could trust clinicians to have my best interest at heart, let alone my child’s. With the pending evaluation, I wanted help but preferred help from someone who looked more like me. I kept wondering how a white female could relate to my child or me. Culturally we are different, from the way we comb our hair to how we greet another person.

When diagnosis day finally arrived, I was elated to put a name to all the restless nights. My daughter was diagnosed with autism spectrum disorder. I left that day with reassurance that I was indeed on the right track. But as I toured different facilities, I did not see anyone that looked like us. This feeling left me disappointed. No one in my family had walked this path, so I had no help with guidance or insight, but I was determined to obtain some help. As a parent, we are tasked with some minor and some major decisions to make on our children’s behalf; making the natural choice to seek applied behavior analysis (ABA) services was a significant decision in my eyes.

While I was grateful and relieved to finally have a diagnosis, I soon had a new concern. I quickly learned that the field of ABA lacked diversity within leadership roles. The most recent demographic data report by the Behavior Analyst Certification Board (BACB), reports 70.05% of certificants are white, with the remaining identifying as Latinx (10.56%), Asian (6.85%), Black (3.93%), Pacific Islander (0.38%), and American Indiana (0.28%).

My daughter’s primary struggle was with receptive communication. She could speak but would often talk at people. Her conversations would lead to questions she overheard on television: “Did you know your heart is located in your diaphragm?” However, my child was rarely truly interested in the actual response; if she was, she didn’t wait long to receive the answer before jumping in with another medically driven question. It seemed as if her focus was on the oohs and ahhs or the “wow, how smart” conversations that would follow.

ABA was described to me as a treatment option using empirical studies to promote behavior changes among people living with autism spectrum disorder (ASD). ABA included various treatment settings, and my daughter was provided two options. Option one was to have a behavior technician come into our home. The clinician explained how they would use ABA practices to decrease her comorbid diagnosis of sibling rivalry. Option two was an after-school social skills group to target her ability to reciprocate verbal responses when communicating with others. However, both did not resonate with my lifestyle nor my views as a Black parent, especially with the syntactic structures and linguistics I noted in our brief conversation. I often wondered if my family’s values would be accepted or would I have to have a practitioner come into my home and encourage their societal norms, and that was not something I was willing to accept. As a single mom, I also pondered how I would be able to bring my daughter to a social skills group while working a full-time entry-level job.

I wasn’t wrong to worry. Research shows that Black Indigenous Persons of Color (BIPOC) families and those of low socioeconomic status may encounter issues with inappropriate treatment delivery because of different cultural perspectives. I knew BIPOC families receiving treatment from white practitioners could often face implicit biases because of the country’s systematic racism, which frightened me. Unfortunately, the data says  white clinicians are likely to make assumptions regarding treatment based on stereotypes and their own lived experiences, leading to inaccurate recommendations. So, I did not move forward with ABA services. I did not feel any facility I visited had clinicians who knew how to properly teach my brown-skinned child how to speak the English language, consistent with my families’ syntactic structures.

This pivotal moment in my life shifted my perspectives and my professional journey. I decided that I could (and would) become the Black clinician I once sought. My journey has been harrowing, and often times I still feel like I remain the elephant in the room. But today, there is a peek of light at the end of the tunnel.

When parents embark on a journey designed to make socially significant changes in their child’s life, resistance is likely to happen when approached by a white clinician – especially in southern regions. The south has been known for racial divides and limited resources for Black communities. Southern states have long represented large Black populations and are often referred to as the Black Belt.  Nonetheless, Black patients continue to fight a battle for health equity and justice. ABA services are no different; the Journal of Autism & Developmental Disorders found that African-American children with autism were diagnosed an average of 1.4 years later than white children and spent eight more months in mental health treatment before being diagnosed.

BIPOC patients deserve support in their fight for equal services. BIPOC patients deserve consideration when formingeffective treatment plans. After a long road to a proper diagnosis, families should not face additional challenges in teaching their children the tools necessary for productive and responsible citizenship consistent with their cultures.

My goal as a clinician has always been to inform the world of societal differences that may impact treatment modalities. One example is the lack of acknowledgment often witnessed when practitioners teach verbal and behavioral skills. Often, Black individuals are forced to code-switch. When practitioners not familiar with the cultural nuances in language, work in some homes, they may dictate using what they are familiar with. Code-switching is exhausting, yet many Black individuals are forced to use the “standard language” society deems acceptable in a field focused on effective treatment. As a Black woman, I’m aware of this struggle (and have had to do it in my own life and work). I’m even more aware and conscious that it may be more challenging for those who are autistic to change their behavior readily, let alone the spoken language they are accustomed to hearing.

My experience as a Black Medicaid recipient who crossed various obstacles with my daughter’s diagnosis and treatment process encouraged me to seek out a company devoted to expanding diversity when I finally received my certifications. I am now a Black clinician striving for continued growth with ABA services in the south. I am hopeful for change as I continue to acknowledge cultural differences within my treatment plans.

LEARN pledges to create a community centered around trust, respect, tolerance, and empathy. Read more about LEARN’s DEI journey in our 2021-22 DEI Annual Report and find out how we are investing in our clinicians cultural competence and increasing the diversity of our clinical team. Together, we’re better.

BHCOE Accreditation: Understanding How Quality Care is Measured in ABA

Sara Litvak, Founder & CEO of Behavioral Health Center of Excellence, the only ABA-specific accrediting body joins us to discuss the different ways quality is measured in the accreditation process. This discussion delves into the importance of not only clinical standards but the needs of clients and their families. As Sara shares, “We are here as a support for parents who are receiving ABA. We aim to ensure their needs are protected and that all patients get excellent care.”

For More Information:

BHCOE.org 

https://www.bhcoe.org/resources/

https://www.facebook.com/BHCOE

https://www.instagram.com/bhcoe/

https://twitter.com/bh_coe

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral learnbehavioral.com

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.

Top 5 Autism Studies from the Last Year

BY KATHERINE JOHNSON, M.S., BCBA
SENIOR DIRECTOR OF PARTNERSHIPS

Looking back at 2021, there were significant developments, both in research and thought leadership, in the field of autism and applied behavior analysis (ABA).  Here are some studies and papers you don’t want to have missed!

 

Girls’ Genetics and Autism

2021 gave us another important building block in the ongoing investigation in to how and why autism manifests differently in girls than in boys.  A study by Jack et. al. found that there was a much greater difference in brain activity in autistic and non-autistic girls, than was previously found between autistic and non-autistic boys when viewing biological motion.  In the second half of the investigation, they looked at the girls’ DNA.  What they found (greater differences in brain activity and more gene mutations among the girls) bolsters the “Female Protective Effect” theory, which holds that girls require more genetic predisposition to autism in order to show autistic traits.  Inquiries into how autism manifests differently depending on sex is integral to being able to more accurately identify and support girls on the spectrum.

Allison Jack, Catherine A W Sullivan, Elizabeth Aylward, Susan Y Bookheimer, Mirella Dapretto, Nadine Gaab, John D Van Horn, Jeffrey Eilbott, Zachary Jacokes, Carinna M Torgerson, Raphael A Bernier, Daniel H Geschwind, James C McPartland, Charles A Nelson, Sara J Webb, Kevin A Pelphrey, Abha R Gupta, the GENDAAR Consortium, A neurogenetic analysis of female autism, Brain, Volume 144, Issue 6, June 2021, Pages 1911–1926, https://doi.org/10.1093/brain/awab064

How Can Behavior Analysis Help Prison Reform?

Many behavior analysts have heeded the call to focus on their own cultural competence and anti-racism work; this paper outlines ways they can put those skills to good use.  Crowe and Drew review the history and current state of a social injustice faced by many people with disabilities: segregation via incarceration.  The authors posit that behavior analysts can help to interrupt the “school-to-prison pipeline” and outline their theory.  Although the authors call for a grand restructuring of the prison system (including abolition of the current system), they also offer thoughts on how behavior analysis could improve current institutions.

Crowe, B., & Drew, C. (2021). Orange in the new asylum: Incarceration of individuals with disabilities. Behavior Analysis in Practice, 14(2), 387-395. https://doi.org/10.1007/s40617-020-00533-9

Bridge Over Troubled Water…

If you have been following the conversation about ABA and neurodiversity, you’ll want to read this paper.  A group of Autistic and Non-Autistic authors challenge the belief that ABA is inherently harmful for Autistic people and proposes the perspective that behavioral interventions can be “compatible with the neurodiversity paradigm.”  After a history of autism and behavioral interventions, the authors delve into a thorough discussion of how Naturalistic Developmental Behavior Interventions may bridge the gap between opposing viewpoints about the use of behavioral interventions with people on the spectrum.

Schuck RK, Tagavi DM, Baiden KMP, Dwyer P, Williams ZJ, Osuna A, Ferguson EF, Jimenez Muñoz M, Poyser SK, Johnson JF, Vernon TW. Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework. J Autism Dev Disord. 2021 Oct 13. doi: 10.1007/s10803-021-05316-x. Epub ahead of print. PMID: 34643863.

The Function of…. Happiness?

And the Functional Analysis (FA) gets another twist!  Thomas et. al. assessed whether or not paying attention to indices of happiness would assist in finding effective interventions to decrease challenging behavior.  They found that when interventions were derived from what they learned about the children’s happiness, they were as effective as interventions based solely on the function of the challenging behavior, and they were associated with more behavior associated with happiness.  In the search for effective treatments that are maximally acceptable to consumers, this is a useful addition to the FA!

Thomas BR, Charlop MH, Lim N, Gumaer C. Measuring Happiness Behavior in Functional Analyses of Challenging Behavior for Children with Autism Spectrum Disorder. Behav Modif. 2021 May;45(3):502-530. doi: 10.1177/0145445519878673. Epub 2019 Sep 30. PMID: 31565953.

Assent in Research

With the addition of “assent” to the BACB Code of Ethics, behavior analysts have begun the search for research, resources, and materials on the topic.  After a discussion of the federal statute and how it may or may not apply to autistic subjects, the authors discuss assent in the context of the behavior analytic values of self-determination and choice.  They then examine how frequently assent has been obtained in the behavior analytic research (spoiler alert: not frequently), note the methods that have been used, and propose a procedure for obtaining assent from nonverbal potential research participants.  This may be the only JABA article on assent in 2021, but it’s a fair bet that it will inspire many more in 2022.

Morris C, Detrick JJ, Peterson SM. Participant assent in behavior analytic research: Considerations for participants with autism and developmental disabilities. J Appl Behav Anal. 2021 Sep;54(4):1300-1316. doi: 10.1002/jaba.859. Epub 2021 Jun 18. PMID: 34144631.

TSC: A Rare Genetic Disease with a 50% Autism Diagnosis

Kari Luther Rosbeck, President & CEO, TSC Alliance, and Steven L. Roberds, PhD, Chief Scientific Officer, TSC Alliance join us for a discussion about Tuberous Sclerosis Complex (TSCA) a rare genetic disorder. This is an incredibly educational conversation on how this disease is identified and treated.  About 50% of those diagnosed with TSC, will also have a diagnosis of autism. Even if your child is not at risk for TSC, the thoughtful approach to treatment and resources can be valuable for all parents. As Kari shared, “When people are ready, they need to know; what are the  right questions to ask, what about genetic testing, what about medication, and how does that whole system work?”

 

Learn more about TSC Alliance by visiting tscalliance.org

Interested in ABA therapy for your child? Contact us https://lrnbvr.com/contact

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com)

Dr. Temple Grandin and Dr. Debra Moore – Navigating Autism

Dr. Temple Grandin returns to the podcast to discuss her latest book, Navigating Autism, which is a collaboration with psychologist Debra Moore, who has done extensive work with children, teens, and adults on the autism spectrum. This episode highlights Dr. Grandin’s powerful personal insights and wisdom with practical support and help from Dr. Moore. In this lively conversation, Drs. Grandin and Moore delve into a number of topics, from how to teach your child basic skills to what you can do to identify and stretch your child’s strengths and interests. The authors also share their belief that many educators, parents, and caregivers underestimate their kids, and they offer advice on what parents can do to help their child reach their highest potential. 

Interested in ABA services for your child? Contact Us: https://lrnbvr.com/contact

Interested in a career in the ABA field? Apply Now: https://lrnbvr.com/apply-now

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).

10 Top-Performing Podcast Episodes About Autism

In a year when the pandemic kept many families at home and on their screens, many Americans turned to podcasts to fill their downtime. At LEARN Behavioral, we’re no exception.

We recently reached our 100th podcast milestone on All Autism Talk, where we’re connecting the autism community one podcast at a time. In celebration of today—International Podcast Day—we’re launching a new podcast with Temple Grandin discussing her latest book, Navigating Autism: 9 Mindsets for Helping Kids on the Spectrum. We’re also bringing you 10 of our highly popular episodes:

 

1. Temple Grandin – Parenting Kids with Autism

In one of our most-listened-to podcasts, Temple Grandin, PhD, an American scientist and animal behaviorist who has been a trailblazer for people with autism, shares advice for parents raising kids on the spectrum. Drawing from her experiences growing up with ASD, she talks about everything from sensory overload and excessive screen time to the need for more 1950s-style “old-fashioned methods of parenting” full of “teachable moments.”

 

2. Female Life on the Spectrum – Insights from Jennifer Cook O’Toole

Jennifer Cook O’Toole was diagnosed with Asperger’s syndrome at age 35 and is raising three children on the spectrum. She’s the author of seven award-winning books, including Autism in Heels: The Untold Story of a Female Life on the Spectrum. In this engaging and, at times, humorous podcast, she explains why diagnosis has been widely missed in girls and women.

 

3. Addressing the Cultural Needs of Families with Autism

Corina Jimenez-Gomez, PhD, a behavioral scientist at Auburn University, and Lauren Beaulieu, PhD, a behavior analyst for Newton Public Schools in Massachusetts, team up on this podcast to talk about cultural competency and the importance of cultural responsiveness in ABA. They bring personal experience to the conversation, with Corina sharing stories of her experience as a mom and Venezuelan native, now living in Alabama, and Lauren discussing her marriage to an Italian immigrant. Both say relationship-building is an important part of navigating what can sometimes feel like a clash of cultures.

 

4. Early Identification of Developmental Delays in Children – Dr. Sharief Taraman

Dr. Sharief Taraman is a neurologist at Children’s Health of Orange County (CHOC). In this episode, he discusses how diagnostic screening can help identify developmental delays in children. Early identification and diagnosis, he says, can help families get the right treatment right away.

 

5. What to Expect from ABA Service Providers – with Dr. Hanna Rue

Hanna Rue, PhD, Chief Clinical Officer at LEARN Behavioral, eases parents’ minds in this conversation about what they can expect when it comes to applied behavior analysis (ABA) providers. How do providers apply our understanding of how behavior works to real situations? How do they help increase behaviors that are helpful and decrease those that are harmful for learning? Listen in to learn more.

 

6. The Role of Genetics in Autism, Explained

Wendy Chung, MD, PhD, director of clinical research at the Simons Foundation Autism Research Foundation, works as a molecular geneticist and physician and is something of a genetic detective who traces an individual’s symptoms to a particular genetic anomaly. In this podcast, she breaks down what we know about the causes of autism.

 

7. Autism Resource Mom – Autism Support and Information from the Best Expert, a Mom

A mother’s intuition and drive to advocate for her kids can make her the best expert when it comes to her child’s care. That’s something Debora Smith understands to the core. She’s raising a son on the autism spectrum, and she founded Autism Resource Mom, a nonprofit organization that helps families navigate the complex world of autism. Listen in to find out how she’s turned her passion into helping others.

 

8. Autism, Aggression, and Self Injury – Exploring a Mother’s Journey with ECT

More than a decade ago, Amy Lutz and her husband, Andy, struggled with a predicament no parents want to face: how could they safely keep their autistic 10-year-old son living at home any longer, considering his violent rages? Amy, a founding board member of the National Council on Severe Autism, discusses their exploration of the controversial procedure of electroconvulsive therapy, or ECT.

 

9. Making Social Skills (and Minecraft) More Accessible for Kids with Autism

As a single father, Stuart Duncan has been all about his kids. His oldest son has autism, and Stuart noticed that kids on the spectrum need a space online where they can play games without getting bullied. So, the Canadian dad quit his job to create Autcraft, a Minecraft server for kids with autism. His virtual community has given people on the autism spectrum the self-confidence to socialize on a safe gaming platform.

 

10. Medical Insurance for Autism Treatment – Understanding the Changing Landscape

Will your health insurance cover your child’s autism treatment? In this podcast, Amy Weinstock, Director of the Autism Insurance Resource Center at the University of Massachusetts, breaks down tools that can help families find out whether they are covered.

 

 

Find dozens of more episodes from All Autism Talk wherever you get your podcasts, including Apple Podcasts, Google Podcasts, Spotify, Stitcher, Amazon Music, or on LEARN Behavioral’s website at www.learnbehavioral.com/allautismtalk. 

Addressing the Cultural Needs of Families with Autism

Corina Jimenez-Gomez, faculty at Auburn University, and Lauren Beaulieu a behavior analyst for 20 years join us to discuss the importance of culturally responsive services in ABA. Along with their extensive work educating others in this area, they each bring their personal experiences to this important conversation. Corina is a mother and Venezuelan native now living in Alabama. Lauren also shares insights she has gained from her marriage to an Italian immigrant. There is so much rich information about how professionals can take responsibility and action to better serve families. One bit of advice offered to those just beginning their careers was, “Do a self-assessment and then get the training and focus on those soft skills that we tend to ignore in masters programs. Focus on relationship building. You may have to step outside your program to get that.”

Training: https://institute.centralreach.com/pages/cultural-competency-in-applied-behavior-analysis

Interested in ABA Services for you child? Contact Us: https://lrnbvr.com/contact

Interested in a Career in the ABA Field? Apply Now: https://lrnbvr.com/apply-now

All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral (learnbehavioral.com).