BCBA Katherine Johnson helps break down what “Self-Determination” is in relation to the ethics and codes of medical practice.
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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.
Understanding the IEP Process and How to Best Advocate for Your Child
Mo Buti, an advocate and instructional expert for people with autism joins us to take a deep dive into the IEP process. She shares details about all the people that make up the team and how parents can best prepare and advocate for their child. As Mo shared, “It’s so important that communicate well and build relationships with your team. Even if you disagree, it makes the process so much more successful.”
For More Information:
You can also email Mo Buti at mobuti@hotmail.com
Interested in ABA services for your child?
Contact Us: https://lrnbvr.com/contact
All Autism Talk (allautismtalk.com) is sponsored by LEARN Behavioral learnbehavioral.com
Selecting an ABA Graduate Program
Graduate school is not something to be entered into lightly. A graduate degree is a big financial investment and requires a great deal of your time for about a 2-year period. It also prepares you for the next stage in your career. Choose your program wisely to set yourself up for success! Here are some important things to consider before you make the big leap:
1) ONLINE OR IN-PERSON?
Do you want to take your classes online or in-person? If you prefer to take classes in-person, think about commuting time, parking logistics, and be sure to get find out their Covid-cancellation policies. If you want an online experience, inquire about whether the program is synchronous (students attend online class with the professor at a set time), asynchronous (classes can be done on your own time), or a combination of the two. Graduate school will be one or your highest priorities for a couple of years, so find a program with a format that works for your learning style.
2) PASS RATE
Graduate programs sometimes post their “pass rates,” or the percentage of their graduates who pass the BACB exam. The pass rate is not the be-all end-all, but it’s one indication as to how effectively the program prepares graduates to take the certification exam.
3) CLASS TIMES
When classes are in-person or synchronous, the course schedule will directly affect the times you are available to work. If you have a set schedule at work, be sure the class times won’t affect your availability. If you’re looking for a job that will help you meet the BACB experience requirements, knowing class times allows you to give potential employers accurate availability.
4) FIELDWORK: PART OF THE PROGRAM?
In order to sit for the BACB exam, you will need a degree and a certain amount of supervised fieldwork (check the BACB website for the specifics). Some graduate programs include fieldwork supervision as part of their course of study and others don’t. Programs that don’t support fieldwork are considerably cheaper, but students should understand that they will be responsible for finding their own supervisor. This may mean paying a BCBA to provide supervision, which makes the tuition savings less significant. Before choosing a program, take time to become familiar with the BACB fieldwork requirements and understand what the graduate program does and does not provide.
5) FIELDWORK: WHAT TYPE?
If the program you’re considering includes supervision, find out which type. The BACB allows applicants to do Concentrated Supervised Fieldwork (1,500 hours) or Supervised Fieldwork (2,000 hours), but most universities only support one of these options. Please note that these hours are subject to change per the BACB.
6) FIELDWORK: SITE
Will the organization you work for be able to fulfill the requirements that the graduate program requires of their field sites? You don’t want to get into a graduate program only to realize it’s not compatible with where you work. Find out if any of your colleagues have gone through the program you’re considering so you can get the scoop on how well the program fits into your job site.
7) FINANCIAL
Beyond looking at cost-per-credit and total tuition, you should also ask for cost estimates of books, materials, and fees. Keep all relevant costs of the various programs you are considering in a spreadsheet for easy comparison. Also, be sure to ask what scholarships, grants and discounts are available. At LEARN, we value our employees’ desire to pursue higher education. That’s why we’ve partnered with universities across the country to help make education for our employees more affordable and accessible.
Choosing to go to graduate school is a monumental decision that will open a lot of doors for you. Select your program carefully to ensure that it’s a fit for you and a great investment in your career!
MYTH: Nonverbal or Nonspeaking People with Autism are Intellectually Disabled
RONIT MOLKO, PH.D., BCBA-D
STRATEGIC ADVISOR, LEARN BEHAVIORAL
Just because someone is nonspeaking, does not mean they’re non-thinking. Around 25 to 30 percent of children with autism spectrum disorder are minimally verbal or do not speak at all. These individuals are referred to as nonverbal or nonspeaking, but even the term nonverbal is a bit of a misnomer. While nonspeaking individuals with autism may not speak words to communicate, many still understand words and even use written words to communicate.
Nonspeaking individuals with autism utilize a variety of augmentative and alternative communication (AAC) methods. These range from no-tech and low-tech options such as gestures, writing, drawing, spelling words, and pointing to photos or written words, to high-tech options like iPads or speech-generating devices.
There are several reasons that an individual with autism may have difficulty talking or holding conversation that are not related to intellectual disability. The disorder may have prevented the normal development of verbal communication skills. They may also have conditions such as apraxia of speech, which affects specific brain pathways, making it difficult for a person to actually formulate and speak the words they’re intending to say. Some may also have echolalia, which causes a person to repeat words over and over again.
While these conditions prevent many individuals from speaking, it does not mean they cannot learn, understand, or even communicate. There is a pervasive misunderstanding about this among the general population due to a lack of education. It is often wrongly assumed that anyone who has difficulty speaking is intellectually disabled.
This misconception can be particularly harmful when held by medical professionals. In the 1980s, as many as 69 percent of people with an autism diagnosis had a dual diagnosis of mental retardation, which would now be labeled intellectual disability. By 2014, that number had declined to just 30 percent, as researchers improved the diagnostic criteria for autism and a fuller picture of the disorder emerged.
Researchers are still working to try and improve diagnostics and better distinguish nonspeaking autism from intellectual disabilities. As Audrey Thurm, a child clinical psychologist at the National Institute of Mental Health in Bethesda, Maryland says: “We have to figure out who has only autism, who has only intellectual disability and, importantly, who has both intellectual disability and autism. That’s millions of people who could be better served by having an accurate distinction that would put them in the right group and get them the right services.”
It’s important to challenge the perception that those who do not speak cannot think. Not only do we risk failing to give them the proper supports and services, but we also undermine their individuality, ingenuity, creativity, and humanity by failing to see them as they truly are. Just because they are not talking does not mean they do not have much to tell us.
Current Autism Research and Why Families May Want to Participate
Pamela Feliciano, Scientific Director of SPARK (Simons Powering Autism Research) the world’s largest autism research study. Dr. Feliciano joins us to share her thoughts on the recent change to autism statistics from the CDC, the value of participating in research, and the information that can be accessed (or declined) for those who do. As she shared, “SPARK’s ultimate goal is to power research to help people with autism live their fullest lives.”
For More Information:
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)
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.
Perspectives: Why Access to ABA Is a Matter of Social Justice
BY NATHAN FRANKLIN
MANAGING BEHAVIORAL TREATMENT TECHNICIAN, WEAP, MILWAUKEE
As our country starts the process of distributing vaccines for COVID-19 and re-opening our cities, many people are hoping that 2021 delivers a return to normal. We are getting that first glimpse of a promising horizon. But instead of trying to return to the old normal, we have a chance to establish a new and better normal, informed by the experiences of the past year.
The coronavirus pandemic brought many new problems to our lives in 2020, but it also exposed problems that have long existed, particularly the racial inequities that are so deeply and structurally rooted in our country.
One of the more well-documented areas of racial disparities is in the area of health care, including behavioral treatment for autism spectrum disorder (ASD), with which I am personally involved. I’ve spent the last 10-plus years providing applied behavior analysis (ABA) therapy to children with autism in Milwaukee at Wisconsin Early Autism Project (WEAP). Studies show that Black and Hispanic children are diagnosed with autism at an older age than white children, are more likely to be misdiagnosed initially, and are less likely to receive an accurate diagnosis at all. Because the best outcomes for children with ASD depend heavily on early diagnosis and treatment, reading these studies was revealing—and brought the issues of racial justice to the forefront of my personal focus.
As a white man working with many children and families of color, I find the reality of a delayed or even absent diagnosis alarming and upsetting—and consider access to ABA a social justice issue that I can personally and directly help address. While I realize the causes of these disparities are complex and must be understood through a larger lens of historic and systemic racism in our societal institutions, I believe we can all make progress addressing these inequalities by starting in our own circles to seek understanding and solutions.
The good news is that by many measurements, the diagnosis gap is beginning to show signs that it is closing, though the problem is far from solved. Getting a diagnosis is only the first step, however, after which actually accessing the necessary services is key. And here again, race, ethnicity, and socioeconomic status can affect access to treatment and the quality of treatment.
For a long time, I took for granted that the vast majority of children I’ve worked with have been Medicaid-funded. Unfortunately, many providers simply do not accept Medicaid clients. While I’m grateful to work for a company that is the exception to that rule, I would call on the federal government, state government, and providers to do more to increase access to services. No one should be denied services because of their income, and since the economic disparities in this country are tied to historic and structural racism, it is not just a matter of social justice but also racial justice to ensure that quality treatment is available to everyone who needs it.
There are other obstacles that can contribute to the lack of access to ABA. For example, many ABA services take place in a client’s home, creating an unintentional barrier for working families, given that home-based services require the presence of a parent or guardian. For families who need multiple people working multiple jobs just to make ends meet, this requirement alone can prevent them from accessing services.
One possible solution is to provide opportunities for treatment that children can receive without their parent or caregiver. In the beginning of 2021, WEAP opened a learning center in the city of Milwaukee, giving communities of color the more convenient access they didn’t previously have but needed. Access is important, and the difference between traveling across a city and having resources in your own neighborhood can be the difference between receiving services—and not.
The services provided for children with ASD are no exception to the general rule of racial inequities, though the research and our understanding are only beginning to develop. For anyone inclined towards research, this is an open invitation to look into these issues more deeply. The experiences of the past year have given us new perspectives to understand that solving a widespread problem requires a combination of research, structural changes, and personal responsibility to do our part in our own worlds. For those of us heavily involved in the world of ASD, this historic opportunity to pursue a new and better normal calls on us to recognize, understand, and address the injustices in our field—and to act with a sense of urgency to ensure that our treatment options continue to improve not only in quality but also in equality.
Myth: People with Autism Don’t Feel Love
by Katherine Johnson. M.S., BCBA
Senior Director of Partnerships, LEARN Behavioral
“One of the most Googled questions neurotypicals ask about dating on the autism spectrum is, ‘Can autistic people fall in love?’” says Tasha Oswald, Ph.D., a licensed psychologist, on her blog series Dating on the Autism Spectrum. “To be honest, this question always catches me off guard,” she says. “Of course, they can.”
For those of us who know and love people on the spectrum, the question may be: how is this myth still around? For one thing, widespread abelism in our culture means that media often depicts love as happening only between people who match some arbitrary standard of ability, beauty, intelligence, or “cool” that the majority of us don’t meet. This perception is compounded by the communication differences that are a defining feature of autism: autistic people either have difficulty communicating or communicate differently than neurotypicals, including expressions of love and attraction. Additionally, sensory differences can make physical expressions of love a little more complicated, requiring explicit communication that, again, may be a challenge. And of course, it shouldn’t be missed that in general, love can be an overwhelming and confusing part of the human condition, including, but not limited to, autistic humans.
Expressions of love
The fact that autistic people experience the full range of human emotions, including love, is indisputable.
A recent article in the journal Autism examined the lived experience of autistic mothers with children ages 5-15. Answering open-ended questions in a semi-structured interview, mothers spoke of their connections with their children using the words “love,” “bond,” and “complete adoration.” Reading their accounts highlights that in spite of the barriers many of them face, their emotional experiences are quite familiar. For instance, one expressed that she felt worried that her love for her second child wouldn’t be as strong as it was for her first – a nearly universal experience of parents of multiple children (Of course, in the end she was “pleasantly surprised” that this wasn’t the case.).
Austin John Smith is an autistic blogger who has shared his experience moving in with a girlfriend and getting used to living together before getting married. As he writes lovingly about their day-to-day lives, he describes the things they have in common, their differences, how they share their emotions, and how they support each other. Smith says, “I love her more than anything in this whole world, and I am 1000% willing to go through anything with her…”
But these are stories of autistic folks who can speak and express their feelings. What about those who are unable to communicate verbally? Laura Cunningham has first-hand experience. The Pueblo, Colorado, woman adopted her son, Spencer, when he was 11. He’s 19 now. He’s on the spectrum and is non-verbal. But “he feels love,” his mom says. Not only does he hug her and hold her hand, but he also has his own way of expressing emotion, one example of which chokes her up. It was the beginning of the school year, and she was talking to him about school. Spencer was excited and did something he had never done before: he picked up his phone and found certain sections of songs that he wanted to play for her over and over. The meaningful lyrics were his way of expressing what he was feeling.
Barriers
Although difficulty in love has been the subject of countless songs, stories, and myths since the beginning of time, autistic folks may have additional strains on their emotional connections. Sensory differences mean that the types of physical expressions of love that our society views as “typical” may not serve the same function for autistic people. For instance, the sensation of kissing may not spark the same warm feelings in an autistic partner that a neurotypical person would expect. Reading social cues, being flexible to accommodate a partner’s needs, and expressing their own emotional needs can all be challenging for autistics. For non-verbal autistic people, expressions of affection can be tragically misunderstood; one mother of a non-verbal autistic teenager named Sam related that “if a 17-year-old boy in his high school puts his arm around somebody, that’s considered fine. My son puts his arm around somebody, he gets an incident report.”
Support: Translating to the other side.
Autism expert Peter Gerhardt repeated a question posed to him by a friend on the spectrum: “if you neurotypicals have all the skills, why don’t you adapt for a while, damn it?”
So, what is society doing to support autistic people in their human quest for love? There are certainly more resources today than there were a decade ago, with support groups devoted to neurodiverse couples, books and resources for autistic people, online communities where neurodivergent people can support each other in their relationship challenges, and even a television show devoted to the topic, Love on the Spectrum.
Even so, more mechanisms for support are needed. Gerhardt says, “When I talk to professionals about the issue of sexuality and relationships on the autism spectrum, they often say, well, parents don’t want to deal with this, parents are afraid to deal with this. And then when I talk to parents about the issue, they say, well, professionals don’t want to deal with it. So, what ends up happening, is nobody deals with it, and it becomes, sort of this, you know, elephant in the living room that nobody is really dealing with.”
Debunking the myth
Society often sends the message that there is a “right way” to express love. People who love someone with autism and are loved by them know that affection can be expressed in a wide variety of ways. Still, that societal standard of what is “right” can lead autistic people to try to be someone they are not. Anyone who has tried to be a “better version” of themselves for a partner knows how much energy it takes and that the relationships often fail. Masking is stressful and harmful. We can all help to destigmatize love among people with neurological differences and work to find more ways to support our autistic brothers and sisters in this integral part of the human experience.
Thankfully, there are a lot of beautiful success stories out there. Austin John Smith writes of his wife, “Despite all the good times we have had, there have been times where being on the spectrum has made things difficult for Annie and me. What can I say? I’m not perfect. I never will be. I just am who I am. But what I do each and every day with her is what I consider trying to do my best.” We should all be so lucky to have a partner with his perspective.
Lasting Happiness – How to be kinder to yourself and others
Professor Emeritus at the University of Oregon and President of the Choose Kindness Foundation, Doug Carnine joins us to discuss his work with the Choose Kindness Foundation that works with schools, businesses, prisons, and social service agencies across the US to promote mindful kindness.
For More Information:
Dr.Carnine’s website https://feedkindness.com/
Teen mindfulness program https://choosekindnessfoundation.info/the-mindful-kindness-program/
Choose kindness foundation https://choosekindnessfoundation.info/
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)