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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.

Consensus Statement on the Use of Contingent Electric Skin Shock in the Treatment of Severe and Dangerous Behavior

Position: 

We, Autism Learning Partners, Center for Autism and Related Disorders, Hopebridge, and LEARN Behavioral, unequivocally condemn the use of painful aversive procedures, including the use of contingent electric skin shock (CESS), under the scope of practice of applied behavior analysis (ABA) based treatment for challenging behaviors. Our organizations do not and never will employ the use of CESS under any circumstance.

Who we are: 

We are providers of therapeutic ABA-based autism services across 33 states within the United States, representing care that is provided to thousands of clients across all age ranges (infant to adult) and levels of autism severity.

Context: 

In 2013, in a special report to the United Nations, the United States Government was called upon to investigate human rights abuses, in violation of UN Convention against Torture, against students at the Judge Rotenberg Educational Center (JRC); these actions included use of contingent electric shock and prolonged physical restraint (Mendez, 2013, p. 83-84).

In March 2020, the U.S Food and Drug Administration (FDA) issued a ban on the use of CESS in the treatment of severely harmful behavior in individuals with disabilities, including autistic children and adults (Banned Devices, 2020). 

The FDA’s ban was subsequently overturned by the Washington D.C. Circuit Court of Appeals, in July 2021. The ruling was not based on whether the practice is inhumane but rather on the grounds that the FDA does not have the authority to ban specific uses of a medical device, which was declared the responsibility of each state (Judge Rotenberg Educational Center v. FDA, 2021). 

In October 2021, Massachusetts Association for Applied Behavior Analysis (MassABA), a regional chapter of ABA professionals practicing in the same state where the JRC practices, condemned the use of CESS in ABA due to ethical and scope-of-practice concerns. 

In November 2021, the Association for Behavior Analysis International, the largest professional membership group in behavior analysis, announced a task force to investigate the use of CESS in ABA-based practice and to issue a formal statement. As of this date, the task force’s work is underway, but a formal statement has not yet been published.

Purpose of Issuing a Position:

In light of the ongoing legal battles at the federal level to ban and subsequently allow use of CESS in ABA services, in adherence to the updated Ethics Code for Behavior Analysts (Behavior Analyst Certification Board ®, BACB(R), 2020, effective January 2022), and because of our large representation of ABA-based autism services across the U.S., we feel a clear multi-organizational stance on this issue is warranted.

ABA is a compassionate science; ABA-based autism services help individuals access their full potential through sustainable, client-centered, meaningful outcomes. Based on condemnation by the United Nations that have not been resolved by permanent legal action, as well as significant ethical and scope of practice concerns disseminated by multiple groups of experts who have engaged in thoughtful and extensive review (e.g., MassABA, 2021; Zarcone et al., 2020), we wish to address this issue as providers. By advocating for the discontinuation of this concerning practice, and by clarifying its place outside of the scope of ethical practice, we hope to open space for the continued evolution of contemporary ABA.

Rationale/Support:

Evidence does not support the use of CESS. In a review of evidence-based practices for the treatment of individuals with ASD, the National Autism Center (2015) determined CESS had an unestablished level of evidence (National Autism Center, 2015). Furthermore, the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD), an international group of researchers, clinicians, students, parents, and self-advocates, provided a literature review to support their opposition to the use of CESS to target severe aggression and self-injury. Their review identified methodological concerns, insufficient evidence of long-term effectiveness, ethical concerns, and adverse side effects including physical and psychological injury (Zarcone et al., 2020). 

As behavior analysts, we are also bound by a code of ethics. The core principles from the Ethics Code for Behavior Analysts (BACB, 2020) state that behavior analysts are to:

  • Core Principle #1 – Behavior analysts work to maximize benefits and do no harm
  • Core Principle #2 – Behavior analysts behave toward others with compassion, dignity, and respect
  • 2.01 – Behavior analysts prioritize clients’ rights and needs in service delivery
  • 2.11 – [Behavior Analysts] are responsible for obtaining assent from clients 
  • 2.15 – Behavior analysts must continually evaluate and document the effectiveness of restrictive or punishment-based procedures and modify or discontinue the behavior-change intervention in a timely manner if it is ineffective

It is our consensus that these guiding principles are in direct opposition to the use of CESS in the population we serve. Furthermore, the consideration of individual assent was introduced to the latest revision of the ethics code, which is indicative of progress in our field to incorporate client feedback into treatment planning, building trust between client and practitioner. 

If it is appropriate to reduce a behavior, there are many other evidence-based practices available without severe ethical implications. Strategies including antecedent-based interventions, augmentative and alternative communication, behavioral momentum, differential reinforcement, functional behavior assessment, functional communication training, and reinforcement have been determined to meet evidence-based practice criteria (Hume et al., 2021). Practitioners have a wealth of options to treat severe challenging behaviors while also showing compassion and upholding their client’s dignity. 

We direct the reader to the excellent rationales and resources provided by MassABA in their position statement (2021). 

References: 

Banned Devices: Electrical Stimulation Devices for Self- Injurious or Aggressive Behavior, 85 FR 13312 (March 6, 2020).

Behavior Analyst Certification Board. (2020). Ethics code for behavior analysts.

Hume, K., Steinbrenner, J. R., Odom, S. L., Morin, K. L., Nowell, S. W., Tomaszewski, B., Szendrey, S., McIntyre, N. S., Yücesoy‑Özkan, S., & Savage, M. N. (2021). Evidence-based practices for children, youth, and young adults with autism: Third generation review. Journal of Autism and Developmental Disorders, 51(11), 4013-4032.

Judge Rotenberg Educational Center v. FDA, No. 20-1087 (D.C. Cir. 2021).

Massachusetts Association for Applied Behavior Analysis. (2021). Massachusetts Association for Applied Behavior Analysis (MassABA) position statement on the use of electric shock as an intervention in the treatment of individuals with disabilities.

Méndez, J. E. (2013). Report of the Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment (A/HRC/22/53/Add.4). Human Rights Council.

National Autism Center. (2015). Findings and conclusions: National standards project, phase 2. Zarcone, J. R., Mullane, M. P., Langdon, P. E., & Brown, I. (2020). Contingent electric shock as a treatment for challenging behavior for people with intellectual and developmental disabilities: Support for the IASSIDD policy statement opposing its use. Journal of Policy and Practice in Intellectual Disabilities, 17(4), 291-296.

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. 

Spotlight on Diversity in ABA: An Interview with Joshua Polanco

A board certified behavior analyst (BCBA), managing technician, at LEARN’s Autism Spectrum Therapies (AST) in California’s Inland Empire region, Joshua Polanco provides supervision and behavioral intervention plans for clients in need of ABA services. He earned a master’s degree in psychology and ventured into ABA because he wanted to use that degree in a more direct and meaningful way. He’s also legally blind.

Here, he shares stories from his journey and experience working with children and young adults with autism—and his take on the importance of diversity, equity, and inclusion (DEI) in the field of applied behavior analysis (ABA).

 

Q: WHY DID YOU GET INTO ABA?

A: I was working as a behavioral technician and providing one-to-one services with multiple clients. I was about to quit after the first two weeks of working in the ABA setting because I did not have any experience with children with disabilities and felt like I was not helping my clients. Ironically, the clients and their families are what made me stay. To me, nothing can beat the sensation of knowing you have made a difference in someone’s life, and I have had so many fun experiences that helped me realize the importance of ABA, and how prevalent it is in our everyday lives. All of these experiences are what drove me to continue pursuing ABA to the position where I am now.

 

Q: WHAT DOES DIVERSITY, EQUITY, AND INCLUSION (DEI) MEAN TO YOU?

A: Everything. I feel these concepts as a whole are very overlooked at times. It’s not only important to have diversity, equity, and inclusion in the workplace but to also recognize the benefits provided when DEI is incorporated into a work environment. In my case, I may be legally blind, but that does not make me useless in a work environment that relies heavily on vision. I am able to continue to make an impact on peoples’ lives through my work and can actually provide a different perspective and understanding when helping clients or co-workers because of my loss of vision.

Q: IN YOUR OPINION, WHAT IS THE MOST CHALLENGING ASPECT OF WORKING IN A DIVERSE ENVIRONMENT?

A: Trying to comprehend various interactions that take place. Balancing the state of empathy and understanding, while simultaneously needing to support and accomplish work objectives that need to be achieved.

Q: WHAT IS YOUR APPROACH TO UNDERSTANDING THE PERSPECTIVES OF COLLEAGUES OR CLIENTS FROM DIFFERENT BACKGROUNDS?

A: The short, easy answer is that I take a step back and just listen. Self-awareness and self-control over your own biases and habits go a long way. It’s important to me to recognize the limitations you have in the moment. For example, you may not always be able to truly understand the perspective of others. This is OK—we are only human. I feel like there are ways to still attempt to understand to some degree. Failure to truly understand someone should not give us permission to disregard their perspective.

I’ve relied, to some degree, on multiple psychology books, articles, and notes from when I obtained my master’s degree in psychology, with an emphasis in clinical counseling and marriage and family therapy. When communicating with colleagues and clients, I always try to review and remember the concepts I learned on the dynamics of communication, including those on cognitive distortions and positive feedback loops. Understanding these can play a huge role on how I understand and communicate during a conversation.

Q: WHY IS DEI IMPORTANT IN ABA?

A: Without DEI, we would be refusing to grow ABA as a whole. ABA is a science that expands to more than any one individual population. Part of everything we do is to help, expand, and make a difference in the world. What better way to accomplish this than to recognize the different things people have to contribute.

Q: TELL ME ABOUT A TIME WHEN YOU ADVOCATED FOR DIVERSITY AND INCLUSION IN THE WORKPLACE OR IN YOUR PERSONAL LIFE.

A: One poignant instance in which I had to advocate for myself is the moment I was officially diagnosed blind, and I had to reach out to the HR department to figure out some resolutions and next steps forward. Luckily, I was part of a supportive team and was able to continue doing the core work I was educated to do and hired for, with some slight accommodations and adjustments.

Q: WHAT’S SOMETHING MOST COLLEAGUES DON’T KNOW ABOUT YOU?

A: I do not know how many people know that I am legally blind. My condition is called Retinitis Pigmentosa (RP). There is no treatment. With this condition, my vision will gradually worsen. There is no telling how much vision I will lose tomorrow…or over the next 30 years. I don’t only have to think about how this affects the work I do with clients but how I adjust my everyday life to prepare for this. Through my work with rehabilitation specialists, I am learning to use technology, to read braille, and even to cook without looking.

Q: ANYTHING ELSE YOU’D LIKE TO ADD?

A: I was diagnosed legally blind less than a year ago. In that time, I’ve taken and passed the BCBA exam, which was the first test I’ve ever had to study for and take without my vision, while finding ways to balance my work, as I learn a new lifestyle. I hope the message from all of this is one of inspiration—that no matter how bad things may seem, it’s important not to let the events around you, define you. Take control of the things you can, adapt, and persevere through the adversity. Because this is what we ask of our clients each day.

For more from our Spotlight on Diversity in ABA series, read “An Interview with Angela Parker.”

Autism Today: A Look at How Far We Have Come and What is Still Needed

Dr. Fred Volkmar, a professor at Yale University with over 40 years in the field of autism-related studies, joins us to provide perspective on how far we have come in the diagnosis, research, and services for individuals with autism.  With all the gains, there is still a great need for more research.  As Dr. Volkmar put it, “I think until we get more parents pushing for work on adults, we’re just not going to see it. You have to put your money where your mouth is and I think the federal government needs to fund more research on adults with autism”. Dr. Volkmar also discusses his latest book written with his wife, Dorothy Goodwin which aims to provide parents with practical help for their family.

For More Information:

Book: https://lrnbvr.com/wiley
Yale Autism Seminar: https://lrnbvr.com/yale-autism-seminar
Center of Excellance on ASD: https://www.southernct.edu/asd-center

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

February Digest

Welcome to our All Autism News series! Whether you’re a parent, advocate, professional in the field or individual with autism, All Autism News is here to give you a summary of this past month’s biggest news stories affecting the autism community.

AllAutismNews_icon_news

National News

New U.S. autism guidelines call for early treatment
Spectrum – Pediatricians should start treating children who show signs of autism even before tests confirm a diagnosis, according to the newest recommendations from the American Academy of Pediatrics.

Autism prevalence in the United States explained
Spectrum – The rise has sparked fears of an autism ‘epidemic.’ But experts say the bulk of the increase stems from a growing awareness of the condition and changes to its diagnostic criteria.

AllAutismNews_icon_research

Research

Study ties gene active in developing brain to autism
Spectrum – Mutations in a gene called ZNF292 lead to a variety of developmental conditions, including autism and intellectual disability, according to a new study.

A Quarter Of Kids With Autism Go Undiagnosed, Study Suggests
Disability Scoop – A substantial number of children who meet the criteria for autism are failing to receive a formal diagnosis, according to a new study based on data from the Centers for Disease Control and Prevention.

Early life experiences may shift severity of autism
Spectrum – A child’s environment exerts a strong influence on the severity of her autism, according to a study of 78 pairs of identical twins in which at least one twin has autism.

AllAutismNews_icon_Teens&Adults
Teens & Adults

When My Daughter on the Autism Spectrum Asked Why I Was Crying
Yahoo! – My daughter, who is 8 years old, is on the autistic spectrum. She was diagnosed over a year ago, has been in ABA therapy for about eight months, and has been making slow but still steady progress. However, that doesn’t exempt us from bad days. Yesterday was one of them.

Intelligence, behavior shape adulthood for people with autism
Spectrum – Just two factors assessed in childhood predict how well people with autism will function as adults, according to a new study: intelligence quotient (IQ) and behavioral problems such as hyperactivity.

Early Treatment for Autism Is Critical, New Report Says
The New York Times – The average age of diagnosis is now around 4 years, but the goal is to get it well under 2, she said. And children who are at higher risk — for example, those whose siblings have A.S.D. — should receive especially close screening and attention.

With Blog, Teen with Autism Gains Voice
Disability Scoop – A few years ago, Mitchell Robins wasn’t able to tell anyone precisely what he was thinking. He lost the ability to speak when he was 4 and relied primarily on a system of pictures and limited sign language to tell his parents and caregivers what he wanted to eat or when he felt sick or how he wanted to spend his time. Then his parents realized he could spell.

Siblings of autistic children may have distinct facial features
Spectrum – Siblings of autistic children, like those with the condition, tend to have faces that are more masculine than average, according to a new analysis. The analysis classified features such as a wide forehead and long nose as masculine.

How can Parents Embed Language?

Many people think of speech-language pathologists (Speech Therapists or SLPs)as professionals that work with people to improve their speech (also called articulation or fluency), but a big piece of SLPs job is to help children with language development. Language is so important for individuals to function in school and life. When children have a developmental delay that impedes their ability to effectively communicate, SLPs work with parents, teachers and other caregivers to develop strategies that improve language acquisition.

Children learn language and communication from their environment and from their experiences and interactions with the people in their environment. Studies have shown that on average, about 90% of the words used by children by the age of three come from their parents’ vocabularies. Children imitate the number of words spoken, the length of conversations and the speech patterns of their caregivers.

This is why it is so important for parents and caregivers to actively engage their infants and children by talking to them as much as possible. The number of words a child hears per day will greatly impact their vocabulary and their language development, and ultimately this impacts success in many other areas for children as they develop. It does not need to be complicated- simply noticing your environment and commenting on it to your child is all it takes to stimulate your child’s learning of language and communication. It’s the frequency that matters.

One of the easiest ways to encourage the learning of language and communication is by encouraging talking during your normal, daily routines. Activities such as bathing, dressing, mealtimes, cooking, doing laundry, going for a walk, driving in the car, and grocery store shopping are all typical daily routines and activities during which you can embed all kinds of important skills that we want kids to learn (see reverse for 10specific ideas).

Below are ten specific skills related to language development with examples of how to insert those into daily activities:
1. Joint Attention Skills:

When looking at pictures, reading books, or even just playing with children, it is important that the child looks at the object, picture, or toy that you are talking about. This ensures that the child is listening and is able to understand the object or picture being labeled and described.

2. Turn-Taking:

Teaching children to respond to physical and verbal directions sets the stage for understanding how to share between two people. For example, when playing with a toy car, if the parent pushes the car to the child and says “vroom-vroom”, the parent waits for the child to respond by pushing the toy car back to them and imitating the sound.

3. Language Stimulation:

During all kinds of daily activities, talk to your child about what you are doing, seeing, hearing, etc. in your environment.

4. Play Skills:

Through play, children often show us what they understand about the world. This is how children discover and learn about objects, people and the world around them. Play with your child often and talk as you play about what you are doing.

5. Fill in the blank:

Set up a predictable, language routines, for example, set up a familiar phrase and purposefully leave out the last word, i.e., While singing “the wheels on the bus go round and ____, round and _____.” Or while reading “brown bear, brown ____.” Gradually make the task more complicated, i.e., during a favorite book, you can exclaim, “Oh, no…look…Clifford is laughing…he feels ____.” Prompt your child by looking at them and waiting for them to reply. Once you do this a few times, they will catch on.

6. Provide choices:

Provide choices instead of asking questions so your child does not have the option of answering “no” when you want to stimulate interaction. Instead of asking your child “Do you want to play with your cars” ask “Do you want to play with your cars or train?”

7. Picture walk: 

It is not necessary to read every word in a book as they can often be too wordy and confusing for the early learner. Instead, encourage your child to look at the pages and guess what is going on. Set up a familiar structure to help your child express herself—go through the book and point out familiar nouns/verbs using the phrase, “I see___”… “I see a puppy.” “I see a sun” while pointing to the object. Next, take your child’s finger and put it on an object you are sure he/she is familiar with and use the fill in the blank procedure “I see a _____ (CAT!)”.When your child becomes familiar with the routine, he/she will begin to say the phrase by herself. This sets up the routine of “my turn-your turn”.

8. Out of reach:

Put desired objects in out of reach places to encourage your child to request and ask for help. A natural instinct for parents is to make everything easier for their child—but many times we are actually doing a disservice when we anticipate our child’s every need. Once a child realizes the power of language, they will talk for what they want.

9. Confusion:

This can get your child talking and it is a nice time to introduce early language concepts in a very concrete way. So—the next time you are at the table and your child asks for peanut butter—give him regular butter instead. Wait for him to tell you that this isn’t what he asked for—at that point you can say “But, Didn’t you ask for butter?”—“NO! PEANUT butter mommy!”—“Oh, I get it now. Peanutbutter and butter are the same in a lot of ways—we can spread both of them on bread, they are both soft and they both have the word “butter” in them! But, they are also very different…peanut butter is a darker color—more like a light brown—and it is sweeter.”

10. Ask and then, Listen:

Once your toddler is talking, start teaching them to initiate conversations, and listen, a lot. You will be surprised once you stop talking about how much more your toddler will talk. This will give your child an opportunity to practice initiating communication and then you can let your child take the lead. Initiating conversation lays the groundwork for many social skills that are so important for future development.

-by Amy Hill, M.A., CCC-SLP and Ronit Molko, Ph.D., BCBA-D

How Long Will My Child Be in ABA?

There is no simple answer to this question. Many factors impact the decision regarding the duration of an ABA (Applied Behavior Analysis) program for a child/adolescent with autism.

Whether services are provided in a home, clinic, or school-based setting there should be a detailed plan in place to guide the family through the intervention process and resources available for when services end. The following information is provided to help parents develop appropriate expectations regarding the duration of an ABA program for a child with autism.

Although there is no cure for autism, there is an abundance of research indicating that intervention programs based on the principles of ABA can have an incredible impact on a child. The ultimate goal of any intervention program is to increase adaptive behaviors and to decrease challenging behaviors to the point the individual with autism is able to function independently in daily life. The length of time a child participates in an ABA program will depend on the type of program implemented, the child’s progress toward identified goals, and the family’s ability to use the principles of ABA in everyday life.

The Program

Intervention programs may be implemented in a variety of settings. Home-based services are often delivered as part of a comprehensive or focused program. Your BCBA (Board Certified Behavior Analyst) may make use of The Behavior Analyst Certification Board (BACB®) Practice Guidelines for Healthcare Funders and Managers to inform decisions about intervention models appropriate for your family. The guidelines state that comprehensive programs address skill deficits and behavioral excesses across many domains and focused programs target a “limited number of key functional skills”. Focused programs often occur over a shorter period of time relative to comprehensive programs.

Progress

Children vary in the time it takes to acquire new skills. Further, complex skill acquisition targets such as maintaining a conversation will often require more time to demonstrate mastery than a target such as color identification. Clinicians should closely monitor a child’s progress toward a goal to ensure learning is occurring. Clinicians should closely monitor a child’s progress toward a goal to ensure learning is occurring If the child demonstrates difficulty acquiring a targeted skill, the clinician must make adjustments to the program in order to meet the needs of the child.

There are a number of ways to monitor a child’s progress. Line graphs provide important and detailed information about a child’s learning. Criterion-referenced assessments such as The Verbal Behavior Milestones Assessment and Placement Program (VB-MAPP) and norm-referenced measures such as the Vineland Adaptive Behavior Scales, Third Edition also provide valuable information. Once the child meets the mastery criteria of all goals identified in the treatment plan, the clinician may recommend a decrease in the number of one-to-one service hours.

Parents and Caregivers

An effective ABA program includes parents and caregivers implementing applied behavior analytic strategies during everyday life. The generalization of skills occurs when the child is able to demonstrate newly developed skills in a variety of environments with different people. Generalization is critical to an effective ABA program. If parents are able to teach their child new skills and generalize those skills to new settings, they are equipped with tools to address future challenges once the ABA program ends.

Putting It All Together

The long-term outcome for every family with a child with autism is different. Some individuals with autism remain at home with family members well into their adult years. Some individuals with autism live independently and pursue a career. Some individuals with autism live with some assistance provided by vocational trainers, social workers, and/or financial planners.

Many families begin their journey with autism by having their child participate in a one-to-one ABA program. One-to-one services are ended when program goals are met and parents are equipped with strategies to support their child’s learning and generalization of skills. However, parents often make use of consultation with a BCBA to assist with problem-solving specific behavioral issues. In reality, ABA is not something that has an end date. The skills that parents develop from the hard work of implementing an ABA program evolve and are used for a lifetime. Just as parents make use of strategies to promote good physical health (e.g., healthy eating and exercise), they also make use of effective teaching and problem solving learned from their ABA program.

 

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