BCBA Katherine Johnson helps break down what “Self-Determination” is in relation to the ethics and codes of medical practice.
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!
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)
The Autism Journey: Accepting vs. Resisting A Diagnosis
BY: NICOLE ZAHIRY, M.A., BCBA
BEHAVIOR ANALYST SPECIALIST, AUTISM SPECTRUM THERAPIES
According to Autism Speaks, in 2021, 1 in 44 children in the United States were diagnosed with autism spectrum disorder (ASD), with boys being four times more likely to receive a diagnosis than girls. A diagnosis, of any kind, means something different from family to family and is often colored by their culture, belief system, generational influences, and socio-economic factors.
For some, a diagnosis provides validation—there is a name for the group of symptoms parents, friends or family members may have observe (or comment on)—things like: a language delay, “quirks” in social skills, atypical behaviors, or excessive tantrums. The diagnosis can be affirming; for moms, in particular, there may be a sense that their “gut” was right. It may be a sigh of relief that their intuition has been validated in the form of a recognizable diagnosis — something more than just an instinct felt deeply in some intangible way. For others, a diagnosis can be a devastating surprise — one that catches unsuspecting parents off-guard and leaves them feeling overwhelmed and underprepared.
Whether a parent has suspected something all along or is taken aback by a diagnosis, all families grapple with making sense of what it all means. The hard part, for many families, is being patient, hopeful, and resolute when the questions far outnumber the answers.
After a Diagnosis
Arguably, one of the hardest parts of the journey for parents of children with ASD, is the beginning. The unknowns are pervasive. The information “out there” is wild. Google is daunting (and often alarmist), and questions lead to more questions even before the diagnosis has been fully digested. Parents may begin asking themselves and others: What is ASD? What does it mean? Will my child learn to communicate? Will his/her behavior ever improve? What now? What do I do? What treatments are available? Why is this happening?
One truth about ASD is that autism is different for each autistic individual. As autistic professor and advocate Dr. Stephen Shore says, “If you’ve seen one person with autism, you’ve seen one person with autism.” And, it’s true. Autism looks, sounds, feels, and behaves differently for each autistic child.
A neighbor, friend, or family member’s autistic child, his/her skills and strengths, areas of need, where and how much he/she is impacted by the diagnosis, will all vary. Every child is unique. Every autistic child is too. Comparing one autistic child against the skills of another can be, at best, misguided and, at worst, detrimental. The best (albeit, the only) way to answer some of those nagging questions is to submit to the journey of autism and start down its road one step at a time, minute to minute, hour by hour, day by day.
The Journey of Autism: Resistance and Grief
There’s no doubt that undertaking something new can feel overwhelming. After all, autism is a journey most parents are ill-prepared to begin and may resist undertaking altogether. Beginning a journey with few answers, little information, and no preparation makes even the boldest and bravest among us uncertain. But, as the old adage goes, “A journey well begun, is half done.” For parents, beginning the autism journey on the right foot often means acknowledging resistance, grief, and other feelings about the diagnosis before heading down the road.
Resistance, in the beginning, often shows-up in unhelpful ways and can breed doubt or distrust and delay access to important early interventions. It often comes from a place of grief, guilt, or anger: Could the doctor be wrong? Did I cause this? Maybe my child will “outgrow” it? Maybe my child is just “slow”? It can be difficult to side-step resistance and forge ahead when many questions remain unanswered. But, the autism journey is not linear—emotions, feelings, and reactions will not be either.
Later on, resistance can become an important component of advocacy. Resistance may prompt parents to speak-up/stand-up, and communicate to care providers if/when assessment, placement, or goals do not align with their (or their child’s) objectives for treatment. Resistance gives parents a new voice; it can lead to useful insights, self-reflection, and those wonderful “lightbulb” moments that have the power to remove roadblocks and push treatment forward.
Processing grief is sometimes an uncomfortable but important additional step for parents new to the journey. All the unknowns can be heavy; grieving the weight of those worries is important. It is OK to be sad. It is OK to feel loss. It is OK to shoulder that grief with a partner, a trusted friend, a therapist, or a family member. It is also OK if parents don’t feel these things, either.
But for those that do, it is critical to recognize that grief or sadness will eventually make way for other emotions and lend themselves to a steadfast resiliency that treatment, therapy, and advocacy often require.
It’s important to acknowledge that grief can (and often does) exist alongside hope, love, and other complicated feelings—sometimes competing for attention. Accepting a diagnosis is not the absence of grief, but rather, an acceptance of it. It is an acknowledgement that things will look different because of autism but also an understanding that different is not less. Different is important and valuable. Differences are necessary. Differences are an inherent component to being alive, to living, to being human.
The Road to Acceptance and Action
Accepting autism means taking those reluctant first steps.
Those steps can be taken with uncertainty, with fear, with resistance or grief, with hope, with love, with the whole gamut of emotions along for the ride. Acceptance involves understanding autism as more than a label but a gateway to support and community; an opportunity to educate siblings, family, and community members about autism, inclusion, and neurodiversity.
It can be a call to action — personally, within the walls of a home, and beyond. Several important organizations at the forefront of autism and autism research were started by parents. Parents looking for support, digging for answers, researching effective treatment for their children. Parents who didn’t expect autism. Parents who may have grieved the diagnosis. Parents who fought hard for their child, for change, for growth, for acceptance and advancement.
A diagnosis also allows parents to access effective therapies via private insurance and academic supports from their local school district. Therapy that opens doors, strengthens skills, and decreases the impact maladaptive behaviors like aggression or tantrums may have on an autistic child’s quality of life.
Acceptance fuels action. Action brings answers.
Autistic children will have different needs than neurotypical children. There will be different obstacles to overcome and different battles to be fought. But, in many ways, the journey will be the same. Life will ebb and flow and push and pull parents in a thousand different ways—some of which will not be easy to understand. Questions will always come before there are answers. And, there will always be questions that don’t have answers. There will be ups and downs. There will be periods of high highs and low lows.
But, there will be joy. There will be laughter. There will be love.
Nicole Zahiry, M.A., BCBA, is a behavior analyst specialist in Orange County, California. She has been active in the field of ABA for nearly 20 years. She is also a mother to three children, one of whom was dual diagnosed with ASD and Attention Deficit Hyperactivity Disorder (ADHD) at 5 years old. Nicole is a fierce advocate for neurodivergent inclusion and considers herself an ally of the disabled community.
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)
The Breakaway – Transitioning Autistic Adolescents into Adulthood
Dr. Tom Welch an expert in work with neurodiverse young people and families joins us to talk about the important work of preparing adolescents for adulthood. Dr. Welch shares key skills parents can help foster while also setting appropriate goals for their child’s future. As he shared, “You’re working toward a goal where you are in influencer but not in control. It’s messy but It’s what we all want…greater independence.”