Is Cultural Competency Training Enough? By Jessi Hinman, ABA Trainee

To set the context, here are some facts about the field of behavior analysis. As of January 4, 2021, there were 44,025 Board Certified Behavior Analysts (BCBA; Behavior Analytic Certification Board, n.d.). Of those BCBAs, 71.82% are white, 9.34% are Hispanic/Latinx, 5.99% are Asian, 3.60% are Black, 0.38% are Native Hawaiian or Pacific Islander, 0.30% are American Indian/Alaskan Native, and 8.57% have not provided their demographic information. Let’s take a look at gender. Of the 44,025 BCBAs, 86.16% are female. Based on these numbers alone, one could say our field is lacking in diversity.

So, in a nearly homogenous field comprised mostly of white and/or female providers, surely, they require training about diversity and cultural competency, right? Not exactly. As behavior analysts, we are required to complete a certain number of ethics CEUs each year (BACB, 2017) and these units can be related to cultural competency (ABAI, 2021). Now, I feel it is important for me to interject here: I absolutely love the science of behavior and am passionate about the work I do every day. This post is not to bash my profession, my field, or anyone within it, rather, it is to challenge us to “do better” as a field and community. It is important to note that as a discipline, we have come a long way, but we still have lots to learn, and that is okay.

This, I feel, requires us to look beyond cultural competency training. Of course, there is great value in understanding culture and how it impacts service delivery but that is the starting point. Fong & Tanka propose seven standards for promoting cultural competence in behavior analysis. These include using culturally sensitive methodological approaches, advocating for a diverse workforce, and providing/advocating for services in different languages. Attend a behavior analytic conference and you will find workshops and talks focusing on cultural competency in the workplace (ABAI, 2021), there are podcasts abundant about cultural responsiveness (ABA Inside Track, 2021), and trainings/webinars focusing on the subject are in hot demand. And this is exciting!! But I can’t help but feel like we are still missing something...

Cultural competency is defined by the APA as, “1. possession of the skills and knowledge that are appropriate for and specific to a given culture. 2. the capacity to function effectively in cultural settings other than one's own.” This seems to imply that once you have the skill, you have it. That’s it. But that’s not it. Our relationship with clients and their families is dynamic and there are many contextual factors which may influence that relationship based on culture. One factor is power. We are in a position of power. We are literally being asked to change someone’s behavior, that should never be taken lightly. How can you ensure your services are liberating and not oppressive? Another factor is systemic inequity, injustice, and disparity – They are historically rampant within the realm of healthcare, for example, lack of access/availability to services, unjust research practices, insurance barriers, abuse of power, etc. These factors have cultural implications and must be better understood. 

So how do we do this? Practice listening without expecting to be taught. It is okay to mess up but be willing to use those experiences as an opportunity to learn. It is one thing to understand culture. That is a wonderful place to begin. But to be truly equitable, we must also examine where we exist within the complex and dynamic relations surrounding our clients and their cultures.

References

Behavior Analyst Certification Board. (n.d). BACB certificant data. Retrieved from https://www.bacb.com/BACB-certificant-data.

Behavior Analyst Certification Board. (2017). BCBA task list (5th ed.). Littleton, CO: Author.

Association for Behavior Analysis International. (2021). 47th Annual Convention; Online; 2021.

Fong, E. H., & Tanaka, S. (2013). Multicultural alliance of behavior analysis standards for cultural competence in behavior analysis. International Journal of Behavioral Consultation and Therapy, 8(2), 17.

ABA Inside Track (2021). Episode 152 - (ETHICS) The Ethics of Teaching Cultural Responsiveness. https://www.abainsidetrack.com/home/2021/1/13/episode-152-teaching-cultural-responsiveness

American Psychological Association. (2007). APA dictionary of psychology.

A Closer Look to Disability by Daniela Fanta

Disability is a concept that is generally at least recognized by the population and when listening to it they know in general terms what it refers to. However, we are all unique and we come from different realities, have experienced different experiences and different knowledge.

During my adolescence, I began to feel that my vision about disability was expanding and that I was learning new things because my sister was studying a career in the health area and was being permanently exposed to her new theoretical knowledge and experiences with clients. Years later, when I began to study Speech and Language Pathology, it was my turn to be part of a study program where I had instances of observation, evaluation, and intervention in different settings, with different people and with different disabilities. However, it was not at the university where I experienced disability in a more intimate and close way.

In September 2015, from one moment to the next, my mother lost the hearing in her right ear. Sudden Deafness, that was the diagnosis given by several doctors and according to the results of the tests, it had no apparent cause.

It was from that moment that many changes began in her life. She began to use a hearing aid, daily struggles with a very strong Tinnitus, adaptation to everyday situations in which now the frequency of certain sounds were very unpleasant (for example the sound of plastic bags or the sound of others or even herself dragging the feet on the floor), dealing with people that would get annoyed if she asked them to repeat something in a noisy place like the mall, start learning lip-reading, among infinite other things. Seeing these changes in my mother's life and witnessing how it affected her way of living and relating to the world, led me to be much more awake and alert about what it means to have a disability. Details such as thinking about the best table option in a restaurant for acoustics, the best place at the table for my mother to sit and have her ear with better hearing more accessible to better interact in a conversation, being aware of always being in front of her when talking to her so she has the visual support of the lips, informing and educating those close to her to be aware of their modulation and articulation for better understanding, and something that should be permanent in our society but apparently a constant reminder is not too much: be more tolerant, considerate and compassionate of the needs of others.

My mother is a person whom I deeply love and admire, she has endless virtues, lots of love to give, and wisdom, but what stands out most from her attitude after several years of difficult adaptation (continuous process), is that she has been able to embrace this disability learning to live with deafness and tinnitus.

Picture description: Black and white picture of my mom showing her tattoo of a treble clef with a heart in the center, located on the back of her right ear.

A Shoutout to the Sibs by Ariana Garagozzo

I offered to read my friend’s scholarship essay yesterday. The essay prompt read, “Tell us about yourself. Discuss your long-term goals and why you feel this scholarship will help you materialize them”.

Her first sentence read, “My brother has intellectual disability, autism spectrum disorder, and a rare genetic disorder”.

I froze after reading this.

“My brother has” was used an introduction to a story about her own identity and aspirations. As a fellow sib to a brother who also has autism and an intellectual disability, I felt a wave of familiarity roll over me. This is a story that many sibs know well. The story of being “two peas in a pod” and the story of “I’ll always be there for you.” 

And for most of us, the experience of having a sibling with a disability is overwhelmingly positive. Research shows that sibs of individuals with autism have more family resilience1, more empathy2, and more maturity3. I was in a sib group as a kid and I remember our big, exciting play dates being trips to library so we could check out new books together. The adults in our lives would constantly tell us how well behaved we were. And we wore that label of maturity as a badge of honor. I specifically remember feeling light years beyond kids who were playing “kid games” like cat’s cradle or tag. And ultimately, this maturity and empathy benefited me. I can proudly say I’m now in a doctorate for clinical psychology working with kids who have disabilities.

But as with every part of life, there’s another side to this coin, and one that doesn’t get talked about as much. The ‘other side’ is the idea of the glass children. Glass children are children who appear strong and unshakeable. They are so strong, that people seem to look right through them, like glass. This is because these children’s caregivers have a fixed amount of energy and resources. When there is another child in the home who has significant needs, caregiver resources get disproportionately focused on the child who needs them most. And so, the other children, the glass children, feel a pull for perfection. They do everything needed to resist adding undue stress to caregivers who are already giving so much. And while these children may have the skills to succeed, they may also feel great pressure to care for their sibling, confusion about how to help their sibling, and fear of the future.

As mental health providers, extended family members, community members, and educators, we need to recognize these children and explore their fears, reservations, and hopes. It is unrealistic to place this responsibility solely on caregivers. We need to work together to provide these children space to be confused, to ask questions, to make mistakes, and to be unsure. “Being heard is so close to being loved that for the average person, they are almost indistinguishable” – David Augsburger

(Picture: Young child scrunching up his face while looking through a large magnifying glass)

To learn more about the glass child phenomenon check out Alicia Arenas’ Ted Talk here:

https://www.youtube.com/watch?v=MSwqo-g2Tbk&ab_channel=TEDxTalks

References:

1.      Bayat M. Evidence of resilience in families of children with autism. Journal of Intellectual Disability Research. 2007;51(9):702–714.

2.      Benderix Y, Sivberg B. Siblings’ experiences of having a brother or sister with autism and mental retardation: a case study of 14 siblings from five families. Journal of Pediatric Nursing. 2007;22(5):410–418. 

3.      Green L. (2013). The well-being of siblings of individuals with autism. ISRN neurology, 2013, 417194.

Self-care is not Helpful: Community Care Based on Trauma-informed Principles by Justine Stewart

In a complex world that recognizes the importance of mental health supports, we have come up with a simplistic solution: self-care. Increasingly, mental health services are becoming more available. There are collectives of therapists who make finding affordable therapy easy. Social media has removed some of the barriers between mental health professionals and the people who need help. There are mental health advocates on social media such as Joanna Konstantopoulou who provides psychoeducation and self-help tips. Even the stigma around mental health may be breaking. There are online spaces such as Melanin and Mental Health that battle the stigma around mental illness and therapy. And though psychotherapy and psychoeducation are increasingly accessible, the dominant approach focuses on individual responses to the problem of mental illness. Individual therapy remains the gold standard and the golden child of mental health, but there are alternatives to individual therapy. Self-care and the host of individual-focused responses may have met its match, a seemingly interminable pandemic, COVID-19. 2020 has shown that self-care is not enough for mental health.

Healing on the inside happens in community. Life’s stressors often come from relationships. From the mundane, “I think my boss does not like me” to intimate partner violence. Families can be toxic and we know that the holiday season is not always cheerful. A Muslim woman and community activist, Nakita Valerio beautifully captures the critique of self-care after the 2019 attack in New Zealand on two mosques that ended in the death of 50 people. Nakita had a one sentence Facebook status that said it all, “shouting ‘self-care’ at people who actually need community care is how we fail people.” There are some burdens that cannot be handled alone.

A trauma-informed approach can help us build communities that promote mental wellness. The principles of trauma-informed care (TIC) as outlined by SAMHSA are already being applied in large organizations such as schools and hospital health systems. TIC acknowledges that people can overcome traumatic experiences with supports. A traumatic event overwhelms our coping abilities. Trauma is the past interrupting the present. Rather than asking the individual to heal themselves, a trauma-informed approach designs the space so that it lessens the likelihood of retraumatization, recognizes that trauma reactions occur, allows the individual to reset and responds with supports. Trauma is an individual problem that requires a community solution and TIC can be applied to communities of all sizes.

A trauma reaction does not look one way. For some people, there is hypervigilance and anxiety. For others, there are sensitive to sensory situations. A trauma-informed approach can therefore alleviate a variety of mental health concerns. Here are four principles of TIC that are important for building mental-health friendly communities.

1. Safety: It is important to keep in mind that safety is determined by the community members. Safety is both physical and psychological. Fostering community where people feel that they can bring their whole selves decreases stress.

2. Mutual self-help: Help does not have to come from a professional who appears to have it all together. Creating community of people who have the same struggles as you, helps to normalize your experience. It also means that you can share lessons with each other as you journey.

3. Level power differences: Each of us can have our role in the community. There is the sage, the caretaker, and even the fun one. Hierarchies are not about our roles but differences in power. Unequal power relationships can trigger feelings of unsafety. In more egalitarian models, everyone is recognized as having something to contribute to the community.

4. Recognize cultural, historical, and gender issues: Even in homogenous communities such as a family there are identity differences that should be considered in relationships. In diverse communities, the cultural history is appreciated and considered in interactions.

The kids are not all right by Anjali Rao

I have been worried about the mental health status of the youth in America since the pandemic began.  Let’s face it, many children and adolescents were struggling with diagnosed, or undiagnosed, mental health issues even before the Covid-19 pandemic began.  So, of course the social isolation that has resulted from school shutdowns and social distancing measures have only made this crisis worse.  This hit home for my local community this weekend due to the sudden suicide of our star student athlete.  Despite a personal struggle with depression, he was still able to maintain an exceptional academic record, was being recruited to play football at the college level, and was adored by his classmates.  Then Covid hit and his depression won.  Our community lost.  If this struggling teen, who had access to every resource available to support him, succumbed to his depression, what does this mean for youth with less resources?

As a pediatrician, I work with an underserved population on Chicago’s South Side.  Most of these children attend CPS schools and have developmental, behavioral, and disability issues.  Many do not have the home structure to support remote learning and due to their disabilities, many e-learning platforms as not compatible with their learning supports.  Many of these children have not received any of their prescribed therapies per their IEPs, and some have just stopped attending school.  For these children, school served as a place to foster appropriate social interaction, combat food insecurity with subsidized breakfasts and lunches, provided a safe place to partake in recreational activity, and a source of routine and daily structure.  Without these benefits, all children, especially those with disabilities, are at increased risk of mental health struggles.  The rates of anxiety, depression, and suicide in school-age children and teens is at an all-time high. 

So, what can we do?  As a country, we need to prioritize keeping our teachers safe as they move back into the classroom, allowing students to return to traditional in-person learning.  Teachers need to get prioritized for getting Covid-19 vaccines.  They are essential workers as they are educating future generations.  In addition, Covid-19 vaccines have not yet been approved for use in children less than 16 years of age.  Thus, vaccinating the adults to care for and teach these children is of utmost importance. 

On a local level, individuals can get involved with organizations that support services to those in need.  An organization that I am involved with in my community is CATCH:https://www.catchiscommunity.org/

Ultimately, it will be through crossing the lines of systems-based care to bring healthcare, education, and community organizations together, that we will be able to best provide care delivery to youth with disabilities.  We have our work cut out for us in 2021!

https://www.edweek.org/leadership/childrens-mental-health-emergencies-skyrocketed-after-covid-19-hit-what-schools-can-do/2020/11

https://now.tufts.edu/articles/how-covid-19-has-affected-special-education-students

https://sites.ed.gov/idea/

https://www.chicagoparent.com/learn/special-needs/how-to-plan-ieps-during-pandemic/

Asian J Psychiatr. 2020 Dec; 54: 102273.

Published online 2020 Jul 2. doi: 10.1016/j.ajp.2020.102273

Why Disability Representation in the Media Matters in the Fight Against Ableism by Sasha Micek OTR/L

Over and over again mainstream media continues to allow able-bodied actors to play non-able bodied roles. Films such as the Shape of Water (2017), Me Before You (2016), the Upside (2017), and the latest addition to this long list: Music, a film by singer-songwriter Sia being released early 2021. The long list of movies, films, TV shows, and other media comes at no surprise to the disability community who over and over again voice “nothing about us without us” when it comes to representation. But once again this community is being sidelined by the people in power, in the majority, so as not to be heard or seen in mainstream society. 

Music is an upcoming American musical drama film. The film's screenplay was co-written by Sia and children's book author Dallas Clayton and stars Kate Hudson, Maddie Ziegler and Leslie Odom Jr (Stevens, 2020). The singer’s directorial debut follows Music, a young girl with nonverbal autism, who finds herself in the care of her older half-sister, the newly sober Zu (played by Kate Hudson). The first trailer for the film arrived on Thursday, November 19, and the response within the disability community has seen many disappointed with Sia’s decision to cast her frequent collaborator Maddie Ziegler as Music rather than someone who is actually autistic. It is clear to the disability community and their allies what Sia’s film represents: Implicit ableism. The film itself, and Sia’s defense of her film is nothing more than an attempt to profit off of a marginalized and oppressed community with no concern for how the film makes those within that community feel. While I use Sia’s film throughout this post, please note the same arguments apply to many other media portrayals that use non-disabled actors to play disabled characters. 

The film “Music” feeds ableist inspiration porn and is written from and for a neurotypical gaze. As previously stated, Music is played by neurotypical actress Maggie Zeigler. It is yet another example of how neurotypicals feel entitled to wear Autistic behaviors as a costume. Simply put, Zeigler can act out actions that are frequently mocked and belittled for natural Autistic mannerisms, while experiencing none of the stigma Autistic individuals face exhibiting the same behaviors. Autistic portrayals in the media are usually viewed as pity projects or in the inspiration porn folder. Their diversity and depth of personalities are too often overlooked- centering on neurotypical feelings. Sia needs to learn that Autistics don't exist to inspire others or fuel savior complexes, nor make anyone feel better about their own privilege. And they especially don't deserve to be profited off of.

To “educate” her-self on Autism Spectrum Disorder during the initial stages of the film's production Sia admits to turning to Autism Speaks, an organization widely despised by Autistics and commonly perceived as a hate group. This organization is notorious for silencing, suppressing, and speaking over Autistic voices. It is important to know how this widely popular organization operates to understand why non-disabled consumers are so glossy-eyed about disability representation- which in turn leaks into all areas of Autism portrayal by Neurotypical individuals. Autism Speaks stigmatizes Autistic existence, pushing a narrative of inspiration porn, pity, and dehumanization. With all that said, Sia stated on Twitter she had “no idea” how problematic Autism Speaks is, and that she is “bummed” she promoted them. The fact that she said this after she boasted of “years of research” utterly proves that her research has not involved learning directly from and prioritizing the opinions of actual Autistics.

Maddie Zeigler’s “research” for her role was extremely disturbing and dehumanising. She states to various news outlets that she watched YouTube videos uploaded by parents of Autistic children having meltdowns in order to learn how to “act” the role. Let it be known, publicly posting an Autistic child’s meltdown which is a state of complete, painful overload of the nervous system) for strangers to consume is a violation of the child’s autonomy and dignity. Especially because they cannot consent to the public posting of such films. Creating such posts exploits children. This is their most vulnerable and traumatised state-- and these videos purpose is to garner sympathy for their parent/s. Yet again, another example of painting Autistic people as pity projects. It is dehumanizing, non-consensual, and abusive. These videos spread immense ableist stigma against Autistic people, and exposes them to mockery. If Zeigler had included Autistic perspectives and guidance in her research, the very people she intended to impersonate,  she would have learned these ideals. Instead she was lazily complicit in the cycle of abuse against them.

Sia believes that casting an Autistic actor for the role would have been “cruel” to that individual. Yet, many talented Autistic actors have come out stating they would have eagerly taken the role. On Twitter, these Autistic actors, including non-speaking Autistics, voiced they would have powerfully drawn from their own lived experience in the portrayal of the role in Sia’s music video. They state, “Autistic people absolutely accel in acting careers, because they’ve spent their entire lives learning how to act in different ways and adapt to fit into countless contexts in a society not designed for them.” Actors are doing their job and just acting, is one side of the argument in this case, except it is not. According to the World Health Organization (2018), disabled people make up 15% of the global population making them the largest marginalized communities. According to GLAAD’s 2019 “Where We Are On TV” report, only 3.1% of characters on TV are disabled, and 95% of characters with disabilities are played by able-bodied actors. Disabled actors are given roles as disabled characters proportionate to a splinter of that global percentage. It is clear that mainstream media does not believe that disabled people have the ability, or should be given the opportunity, to tell their own stories. Our society values non-disabled comfort and privilege over humanising disabled existence.

Sia has tried to defend herself to critics on Twitter and other platforms. However, with every post it is a clear ableist comment made against the Autistic community, allowing her fans to feel permitted to behave the same way. She is weaponizing the power of her enormous fanbase to avoid accountability, and in many cases is leading to the gaslighting of Autistic voices. It is important to understand, just because someone’s “heart has always been in the right place” does not mean oppressed communities have to settle for ableism because it is tagged with “good intentions”. It is clear, Sia’s ego is more important than those she is harming as she has the audacity to be angry and defensive at the Autistic community for speaking out against her, and unfortunately her thousands of fans now feel entitled to do the same. 

While some may say it is refreshing to see a non-verbal autistic woman being represented- especially when these narratives are not often portrayed in the media at all. But the atrocity comes from whose perspective was prioritized in the process of making the film. This is where we see the depth and nuance is left out. Sia shows immense privilege by dominating a story and conversation that isn't about her- it assumes that Autistics don't have the autonomy to decide for themselves what is best for them. In order to prevent further fueling of the ableism fire, it is important to recognize the organizations and artists we listen to in order to educate ourselves of the disabled experience. Instead let's turn our eyes and ears to those who have lived the experience, and listen as they tell their own stories. 

References

Crosman, Cassandra. “The Ableist History of Autism Speaks.” In the Loop About Neurodiversity, 19 Sept. 2019, intheloopaboutneurodiversity.wordpress.com/2019/09/13/the-ableist-history-of-autism-speaks/. 

Ellis, Sarah Kate. 2019, The GLAAD Media Insitute, www.glaad.org/sites/default/files/GLAAD%20WHERE%20WE%20ARE%20ON%20TV%202019%202020.pdf. 

Stevens, Hannah. Digital Spy, Nov. 2019, www.digitalspy.com/movies/a34755910/sia-movie-music-trailer-autism-disability-backlash/. 

Therapy and Ableism by Jane Fong

A question I sometimes have as a Physical Therapy student is how do I motivate my clients to reach their fullest potential without implicitly promoting ableism? What does fullest potential even mean in this ableist society we live in? Physical Therapy and Occupational Therapy have long been part of a disabled child’s life; but if it is done ignorantly it has the potential to send messages that promote ableism. For example, the idea that a child’s value depends on how “normal” they are able to move and go through life.

For the longest time I believed that specialized services such as Occupational Therapy, Physical Therapy and ABA were essential, mandatory services that a disabled child should receive. I believed that these services would help them gain function, independence and promote normal development. But through my classes, I realized that my belief was based on a very ableist mindset. Why is it that we are trying to change disabled children to be more “normal”? Shouldn’t we be changing the system to be more welcoming of neurodiverse individuals instead? For example, if every building was equipped and designed with disabled people in mind, the time disabled children spent on learning how to walk “properly” in physical therapy could be spent on something else that is more important to them.

(Image above: a man in a wheelchair reaching for a book on an accessible bookshelf)

Looking back at my curriculum, I now see how parts of Physical Therapy are rooted in ableism. For example, we learn about the different motor milestones that a child should have but why do we have the goal of getting children to move to these milestones? Does it serve a purpose for the child? Does it align with their goals? Does it improve their quality of life? In an interview with Norman Kunc, a self- advocate and disability rights activist, he talks about how a lot of therapists focus on better functioning, but they often do not realize that a child’s functioning level does not equate to their quality of life. An example he gave was how when he was in therapy as child, he lost the opportunity to socialize and make friends, which negatively affected his quality of life. Better functioning is important for ease of living but Kunc believes that there is a huge difference between ease of living and quality of life. Therapy services often focus on the ease of living aspect, where therapists focus on reducing physical energy spent in daily task and increasing independence. But if we think about what quality of life is, we don’t think about how far we are able to walk or whether we are able to live alone, we think about our relationships, having fun and feeling like we belong.

So, what can we do as therapists living in an ableist world? First, we must be advocates for disabled people. We can do so by listening. We can and should tailor our services to the goals of our clients. We should talk with our clients and figure out what it is they want to achieve. For example, if the goal of a client is to work in a yogurt shop, some of the goals we can work on could be learning how to use a cash register or proper mechanics for lifting bags of yogurt toppings. Furthermore, as therapists, we should also accept and know that our clients know what is best for them, no matter what age they are. If they believe that therapy is no longer beneficial or that their time would be better spent elsewhere, we need to accept and support their decision. Because the truth is, there is a lot more to life than being in therapy. We need to start seeing our clients as more than their disability and use these specialized services to enhance the strengths they already have and work on what is important to them.

(Image above: A colorful pediatric physical therapy gym with a tricycle, parallel bars and balls)

Link to Norman Kunc’s Interview

https://www.broadreachtraining.com/giangreco

Finding Joy in Early Intervention Live Video Visits During the Pandemic by Crystal Williams

I’m a developmental therapist in early intervention and my job brings me enormous joy. Not only do I get to interact with littles who are learning new things practically every minute, I also get the privilege of being alongside families during the process.

When the COVID-19 pandemic interrupted my typical practice of going into homes to work with families, I was devasted. It took some time to adjust and readjust (multiple times) with the everchanging procedures and recommendations, but now I’m 7-months into Live Video Visits (LVVs) and I am finally seeing the joy again! Here are some reasons why:

1.     My experience is amplified with LVV.

When I first took the required training to provide Live Video Visits, I felt unprepared and thrown into the deep end. Honestly, I was just frustrated this wasn’t a practice before the pandemic. I struggled with the transition and figuring out my role, how to talk to families and children on a screen, and how to prepare them for the changes. Now there are resources for this, which you can find from the Early Intervention Training Program and the EI Clearinghouse. Not only can I locate resources for my personal use and for families about LVV, I’ve also learned my own ways of making the most of this experience. I believe this experience has made me a better professional. My confidence in adapting and managing unforeseen circumstances is spot on!

2.     The flow of sessions is smoother with LVV.

Some may say that using video disrupts the natural flow of a session, but my experience is otherwise. Hear me out. When I first started LVVs, I was shocked with the amount of time we had. So many little timewasters are eliminated with Live Video Visits. Taking off my shoes, finding a place for my coat, waiting for the child to adjust to someone else being in the home, and writing my note at the end of the session are no longer issues. I used to hate being in a family’s home and having to “stop” the session to go write my note about what we did. It was awkward and difficult to focus on both tasks then, but now I can easily type my notes while still engaging with the family on video.

We can start the session as soon as we log on and most of my families stay for the full 60 minutes, even if the child isn’t engaged the entire time. For the children who are not engaged during the full session, I find it is easier to manage in Live Video Visits than in-person visits. There is less pressure for us to get the child to participate. We can spend the time planning for the next session or sharing updates and come back to the child when they’re ready, or we can easily reschedule another session if one is cut short. It is especially reasonable to reschedule partial video visits since I don’t have to drive back again, and families don’t have to open up their home again.

3.     Families are the centerpiece.

Coaching families is the greatest advantage of LVVs. There are helpful infographics about coaching during LVV and I use this form with families for planning LVV sessions.

Yes, coaching was crucial during in-person visits as well, but it is easier now that families and providers don’t really have a choice. There was a family with whom I worked pre-pandemic that I struggled to coach. For whatever reason, we developed a habit in which I interacted with the child and mom spent most of the session engaging in household tasks. Now during our LVV sessions, they play together, and I give feedback. I demonstrate little things she can try, and she practices right then and between sessions. It is the epitome of coaching!

My greatest joy during the pandemic has been meeting new families through Live Video Visits. You would think I’d miss in-person interaction, but honestly, I feel just as connected through video. Families are happy to have someone to talk to and bounce ideas off. I’ve noticed that families are more willing to reach out between sessions and share little video clips or stories about their child doing new things. Our connection has been enhanced with Live Video Visits during the pandemic.

We live in a technological world and this allows us to stay connected to families during unprecedented times. Yes, it is new and scary to do video sessions with infants and toddlers. Yes, there are challenges to LVV… But let’s take some time to focus on the joy.

If you need any more convincing, watch this video about a family’s perspective on Live Video Visits.

Collaborating with culturally diverse families: a story of Korean American mothers of children with autism by Veronica Kang

What are the experiences of Korean American mothers of children with autism? Dr. Sunyoung Kim in the Department of Special Education at the University of Illinois at Chicago and her team (2020) conducted an interview study with five Korean American mothers who have a child with autism between the ages of 7 and 10 years. They found four main themes from the interviews.

1.     Mothers found it challenging to search for and set up services due to emotional stress (e.g., “We first thought about setting up services quickly after his diagnosis. Then, depression came back and forth … each time it came, it was hard”), economic and social status constraints (e.g., “He couldn’t get benefits because he was not a U.S. citizen”), and linguistic barriers (e.g., “I have a lot of paperwork … it’s really stressful when it’s in English”).

2.     Mothers discussed the impact of autism on the sibling relationship. One mother, Hana, said, “My first child can manage kids well. He loves my second child with autism … before the third one was born, they were best friends. He has great compassion … That helps children’s emotional development … having a second one with disability. Most kids don’t know that’s good for them educationally.” Another mother, Min-Ju, said, “Tina and Tina’s younger brother often fought … it is not a fight … Max couldn’t stand Tina’s behaviors. So I explained, Tina is special … Max seemed to understand a little bit.”

3.     Mothers discussed the impact of autism on their personal lives. Mothers often expressed guilt by stating “I am not doing a good job as a mother”, “I push myself so hard”, and  “I am getting through my life without being myself”. Mothers also explained a sense of social isolation when they said, “I cannot build a relationship” and “I feel isolated but I feel a sense of fruitfulness if I do a little thing for my kids”. As most mothers in this study immigrated to the U.S. in their adulthood, the findings show that culturally diverse mothers may benefit from additional social support to build meaningful connection, linguistic support (e.g., translation), emotional, and practical support (e.g., navigation through the system). 

4.     While most mothers reported satisfaction in their relationship with the teachers, they also reported low levels of expectation with the school services. One mother, Min-Ju, said, “It would be good if the school could do better and provide more services, but it’s okay since we receive therapy outside of school”. This could be due to the lack of opportunity to observe therapies within the school system, as described by Hana. Also, all mothers believed the duration or length of therapy at school was limited. Particularly, mothers desired for more opportunities for their children’s social skills development at school.

What is the main take away for us as LEND trainees? The findings align with previous research (Lee & Park, 2016; Park & Turnbull, 2001). Whether it is the language, culture, economic constraints, or lack of knowledge of the system, culturally diverse families may experience confusion, stress, and guilt as suggested by current research. More support to address language barriers, emotional well-being, and navigation through the system is clearly needed (Cho & Gannotti, 2005; Yan et al., 2017). In the context of education, Trainor (2010) highlighted the importance of home-school partnership in promoting learning and growth of the students. Regardless of the discipline, I believe that our efforts to facilitate and engage in family-professional partnership and culturally responsive practices will be critical in enhancing the family experiences.

In lay terms, I suggest that we, as practitioners, researchers, and leaders ...

1.     actively take time to engage and build relationship with the family members

2.     put families first and at the center of our practice, especially when we are having team meetings, setting goals, making decisions, evaluating progress, and even implementing intervention

3.     use visuals or written materials for families to take home

4.     provide a clearly summarized document rather than (or in addition to) a lengthy stack of paperwork

5.     use translation apps, if possible, to translate some, if not all, parts of the materials

6.     interact with families with “kindness and empathy”, as one parent said during a LEND family visit.

If you have other suggestions, concerns, or feedback, I would love to learn and hear from you.

I hope this blog post provided an opportunity for us to reflect on how we engage ourselves with families who may not speak English as their first language, frequently have questions, or at times seem confused or frustrated because they are not familiar with the system, the terminologies, or the service delivery process. Just as it applies to all parts of our lives, I am reminded today to have “kindness and empathy”. As Maya Angelou said, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

Image description: The left side of the image is Maya Angelou, an African American woman with short, curly, brown and gray hair, wearing a pair of large, gold hoop earrings, a gold necklace, and a brown, lacy top. The right side of the image is text stating, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. Maya Angelou”.

References 

Cho, S. J., & Gannotti, M. E. (2005). Korean-American mothers’ perception of professional support in early intervention and special education programs. Journal of Policy and Practice in Intellectual Disabilities, 2(1), 1–9.

Kim, S., Kim, H., Kim, J., Nichols, S.C., & Kang, V.Y. (2020). Experiences and impact of having children with autism spectrum disorder on the lives of their Korean-American mothers.

Exceptionality. Advanced published online.

Lee, Y. J., & Park, H. J. (2016). Becoming a parent of a child with special needs: Perspectives from Korean mothers living in the United States. International Journal of Disability, Development and Education, 63, 593–607.

Park, J., & Turnbull, A. P. (2001). Cross-cultural competency and special education: Perceptions and experiences of Korean parents of children with special needs. Education and Training in Mental Retardation and Developmental

Disabilities, 36(2), 133–147.

Trainor, A. A. (2010). Diverse approaches to parent advocacy during special education home-school interactions: Identification and use of cultural and social capital. Remedial and Special Education, 31(1), 34–47.

Yan, M., Kim, S., Kang, H., & Wilkerson, K. L. (2017). Perception of disability and special education among East Asian parents: U.S. immigrants and non-immigrants. Journal of International Special Needs Education, 20(1), 41–55.

From Impairment to Community, what Disability Means to me by Daniel Lakemacher

For most of my life, I’ve recognized that I’m different, but the stories I’ve told to make sense of myself as an anomaly have changed a lot over the years. This is as true for the explanations I’ve given to others as it is for the narrative I’ve told myself. A turning point that brought those internal and external stories closer together was being diagnosed with autism and ADHD in my thirties. 

Somehow this news came as equal parts shock and a “no duh” confirmation of what I already knew. After the first diagnosis, I was trying to process it with a therapist and she mentioned something about coping with disability. Completely oblivious to my internalized ableism, my knee-jerk reaction that I defended for years was to reject that framing as irrelevant and perhaps even insulting. The therapist took the hint about how little I could handle at that moment and didn’t push the point. Years later, I can acknowledge the fear I instinctively sought to hide as well as the combination of ignorance and denial that caused it.

Writing this now, I’m by no means fearless when it comes to sharing about disability, but I think I’m a little less ignorant and a lot more accepting. Today, I recognize that being disabled is part of who I am, and it’s neither my fault nor something in me that requires fixing. This isn’t a change that happened through therapy or from studying and self-reflection, even if all three of those played some part. The key to changing my perspective was socializing with people who valued their shared experience of disability as the foundation for building an empowering community.

This didn’t happen all at once and it began in snippets online through finding YouTube channels like “How to ADHD” by Jessica McCabe and learning about the neurodiversity movement from popular writers such as Steve Silberman and John Elder Robison. As I quickly learned, evading the term disability wasn’t uncommon even in forums in which it seems like disability is the central issue. For example, more than four years after starting her ADHD-focused channel, and with more than half a million subscribers, Jessica McCabe grapples with questions like, “Am I disabled?” and “What does disability really mean?” in her most recent video. I’m not highlighting this as a shortcoming of Jessica’s, but I share it as an example of how strongly stigmatized the word disability is given that identifying with it can be a struggle even for those whose relative celebrity status is built around disability in principle if not in name. 

    Moving from online to in-person interactions, I enrolled in a graduate program at the University of Illinois at Urbana-Champaign and accelerated my opportunities to explore what disability could mean. Unlike during undergrad, having a documented diagnosis meant I could seek accommodations through the campus disability office. From there, I met a group of students interested in forming a local chapter of a national organization called DREAM (Disability Rights, Education, Activism, and Mentoring). 

Within these newfound friendships, I saw how the word disability didn’t function as an impairment-based label that defined us by what we couldn’t do. Instead, DREAM allowed me to experience how acknowledging disability as part of my identity could connect me with a powerful movement of people who are unwilling to accept the limitations placed on them by an ableist society. Disability can look extremely different from one person to the next, or it can “look” like nothing at all as poignantly noted by Israel Sanchez in his IL LEND November 2020 blogpost in which he chaffs at being told, “You don’t look like you’re autistic.” I’m sure the stories I tell to make sense of my life will continue to change, but I’m confident that as they do, my use of the word disability will increasingly be associated with references to supportive community rather than my own impairment.

AUCD Conference Blog Post: A reflection By Mary Jansen, Student PT

The AUCD Conference is normally held in Washington DC, but given our current situation as a society, the 2020 conference was a virtual event.  While a virtual event may not be as exciting of an experience as an actual live conference, I am almost certain that I would not have been able to attend the conference if it had been in Washington DC.  I am so incredibly grateful that I was able to Zoom into the different plenaries and concurrent sessions; each was very beneficial to me as a trainee and I plan on reflecting back on this experience often during my future career as a physical therapist. 

While I feel that I learned something new during each concurrent session that I attended, there are two main concepts that really stuck out to me.  The first idea was discussed during the opening plenary on Monday December 7th.  The speaker presented a picture of a big, healthy tree with many green leaves, some low hanging fruit, and large roots.  There were several groups of people in the green grass surrounding this tree, and each group of people were visiting a gravestone.  This tree is called the tree of health and represents society and the social determinants of health.  The tree’s fruit is a result of what the tree is fed by society, and unfortunately the tree has roots in racism, sexism, classism and many other harmful concepts.  This causes the fruit to be poisonous; instead of being nourishing, the fruit harms those who eat it.  The way that the speaker presented this tress made it seem as if this was a fairly well-known concept, but it was new to me.  Seeing this tree and hearing the explanation behind it made me realize how prevalent health disparities are in our society.  If we are to truly make a change in the lives of those we treat who have been harmed by the metaphorical fruit of this tree, then we need to address the root of the problem and enact change from the bottom up.

A second idea that really struck me during the conference was the concept, or should I say myth, that ‘one size fits all.’  The concurrent session I attended on Tuesday December 8th entitled “Cultural Competency to Promote Diversity ‘Equity’ and Inclusion: Examples from the field” opened with a video about red high heeled shoes.  The video talked about how this specific pair of shoes are not reasonable for everybody.  Some people might need a different size, while some may not like the color red.  Other people might get blisters form this shoe, while others might not be able to balance in a heeled shoe.  If everybody had these same shoes things would be equal, but not equitable.  In order to provide equitable care, things need to be individualized for each patient based on their specific background and needs.  Making individualized treatment plans for patients is a huge concept that has been covered over and over again in my current PT and LEND curriculums, but seeing this video really cemented my understanding of why individualization is important.  The video about the red shoes really heightened my appreciation of the facts that equality is not the same as equity, and that ‘one size does NOT fit all.’  I will need to always keep this in mind if I am to provide truly equitable care for my future patients.

As I said before, I am so grateful that I was able to attend this conference.  It was eye opening and a very meaningful experience to me personally.  I hope that one day I am able to attend an AUCD conference in DC, but until that time, I will make the most of what I learned from the 2020 virtual conference by sharing with my peers and incorporating it into my education and future career. 

Picture Description: Screenshot from the 2020 AUCD conference opening plenary.  The image is of a tree that the speaker called the tree of health.  The tree is tall with lots of green leaves, fruit, and large roots growing from the green grass.  There are several groups of people visiting tombstones in the grass around the tree. 

Coffee & Spoons by Melinda Miller, BCBA

Sometimes, there are simply not enough cups of coffee in the world to get me through the day.

Don’t even get me started on my spoons.

There was a period of time where my morning alarm came in the sound of giggles and VeggieTales quotes from the next room over. By “period of time” I mean years. And by “morning” I mean o-dark-thirty. The spunky ball of energy making sure I was up is my daughter who was diagnosed with ASD at age 2 ½.

As I write this, we have just passed a decade from diagnosis. My, how things have changed.

I was a young Mom of two, newly married, receiving government benefits and just barely making it by. We dyed spaghetti noodles with food coloring to shake things up a bit. Our outings consisted of going to all the parks in the surrounding area and the grocery store once a week. Once the diagnoses came rolling in for the kids, I became a therapist on top of my motherly duties. Therapy was expensive, exclusive, and far away - especially for someone on government aid. The internet became my best friend. My house looked like an OT gym - yoga balls, trampoline, net swing - you name it, we had it.

I wouldn’t trade those moments for the world.

As a parent of two Autistic children, I know the struggle, the fear, the guilt, the pain, the existential dread that rides sidecar with the “normal” everyday struggles of daily living. However, I also know immense joy, love, compassion and empathy that squish all those other things out of the way. Whenever I meet a parent who has recently gotten their child’s diagnosis, I greet them with open arms and say, “Welcome to the club!” Because, truly, Autism is a beautiful journey.

I remember one time, I had a student say, “Autism sucks.” It broke my heart. I sat across from him and proceeded to tell him all the things I thought were amazing about him: an infectious smile and laugh, the incredible ability to draw complex mazes and screenshots from memory, and the compassion he had for his classmates. Autism is amazing and Autistics need to be told that.

My son is also Autistic. So, not only did I get one invitation to the Autism party - I got two! You couldn’t ask for two more different kiddos. My son sleeps like a champ and I’m so grateful at least one of them does. Other than marvelous sleeping habits, he has the most incredible memory - especially for history. His creativity is off the charts and has the ability to morph into numerous characters. Does he suck at math though? Absolutely. Does he have trouble with logic and sequence? You betcha. His brain works differently than most and that’s ok! That’s what supports are for. And, he and I are learning together, that high school support operates on a different plane of existence than middle school.

My daughter is super cool, too. She is incredibly independent, she’s funny, full of sass, and freaking LOVES slime. She understands way more than she lets on and we are grateful for a team that communicates so she doesn’t get away with any funny-business.

Autism is great. It’s also hard. Very hard. I would be lying to you if I said otherwise. It’s a lot of long, hard hours and sleepless nights but when you have those moments - those “a-ha!” moments, it makes it all worth it. It was years - YEARS - until I first heard “I love you Mommy” from my kids. And I treasure those moments. I treasure the first “I luh oo” and the first full “I love you, Mommy”. My life has been enriched because of my kiddos. If it wasn’t for them, I wouldn’t have gone down my career path - first in special education, then adult services, and now behavior analysis.

Disability is beautiful. Each person is unique and brings something awesome to the table. We need to acknowledge that - privately AND publicly. Tell people how awesome they are - it means so much, especially when they’re running low on coffee and spoons.

Thanks for stopping by.

I am glad you exist.

Adapting to New Routines by Zhihui Yi

Changes in daily routine can be hard. With the holiday season and the winter break coming up, many school-aged children’s schedules are about to be changed. On top of that, the COVID-19 pandemic adds additional uncertainties to this year. These changes in routine can be especially challenging for children with a diagnosis of autism, as research has shown that unpredictability can be a source of stress. Here are some simple techniques you can try out at home to make these transitions a little easier.

1. Use the Grandma’s Rule. When it comes to grandma’s bag of tricks with children, you may picture them saying “go clean up your rooms first and then you can have your cookie!” This is exactly what the grandma’s rule is in a nutshell. The grandma’s rule is a way of presenting instructions where you frame your requests as “first XXX, then XXX”. Doing so will not only decrease the unpredictability, since you’re laying out what are going to happen, but also specifying what will happen once the request is completed (aka, the consequence). You can use this language in many situations in your child’s daily routine.

2. Work out a “predictable” schedule. Another way to decrease the unpredictability is to being upfront with what the new routine will look like. No one loves keeping accommodating to surprises. Working out a new schedule beforehand and stick to it often makes the transitions easier. You can then post it on the wall, mark it on the colander, and try your best to stick to it.

3. Find alternatives. One thing that makes changes in routine difficult is that some of the things we enjoyed may not be available anymore. Maybe it is a holiday tradition that everyone goes to grandma’s house for a big thanksgiving dinner, but you might get disappointed this year due to COVID. In situations like this, you can try to find alternative ways to achieve the same goal. Instead of meeting in person, you can try to FaceTime during thanksgiving dinner. Instead of exchanging presents in person, you can plan and mail them out ahead, so they’ll arrive before Christmas.

4. Involve the child! Perhaps the most important step is to make sure that you include your child throughout the whole process. Don’t make them a passive “receiver” of change. Instead, ask them how they’d like to do among the options that are available. Keep having an open conversation and being flexible to make adjustments as needed is the key as the whole family accommodates to the reality we now live in.

People exchange presents.

An Unusual Post-High School Transition: My Personal Story By Lauren Bryant, Self-Advocate Trainee

For most students with a disability, the transition to college is difficult. There are many more factors students with disabilities must take into account when making a commitment to attend a specific school.

For example, when I was looking at colleges to attend, I had to make sure I could receive assistance with my activities of daily living, particularly overnight. I eventually narrowed my options down to three schools; the University of Illinois at Urbana-Champaign, the University of Wisconsin-Madison, or the University of Wisconsin Whitewater. My senior year, I applied to these schools and unfortunately did not get accepted to any of them. Now my parents and I needed to figure out what to do; I would be done with my K-12 education, but they still needed to go to work and I needed somewhere to go and something to do during the work and school week.

White woman with long brown hair and purple glasses sits in a wheelchair outside. She is wearing a graduation cap and gown.

At this time, I had not graduated from high school. During my last IEP meeting, my high school’s director of special education was on maternity leave, so we were primarily dealing with the district’s head of special education. We expressed a fear of me having nothing to do or anywhere to go after graduation, and although spending time in my school’s transition program was an option, it was not a very good one. The program was intended for students with moderate to severe intellectual/developmental disabilities, and it was unlikely I would gain any useful skills in a program like that. Instead, my parents and I asked our district’s head of special education if it might be possible for us to create our own transition. She agreed, and I spent a year taking classes at our local career and technical education center while working on other transitional skills such as work experience.

After a minimally helpful year (the one-on-one aide I was assigned proved to be more of a hinderance than a help to my goals) and another rejection from UIUC, by sheer luck we learned about another program located in Chicago; the Illinois Center for Rehabilitation and Education – Roosevelt (ICRE). ICRE, according to their website, is “a residential school for students with severe physical disabilities and other health impairments”. I lived there for two years, coming home on weekends, which was my first experience being away from home for an extended period of time. While there, I took online classes through College of DuPage, my local community college, in order to increase my chances of getting into UIUC. I applied for the third time during my last year of ICRE and got accepted!

While my years of transition were not the smoothest that they could have been, I am grateful for the practice they gave me in advocating for myself and learning time management skills. Coming to college was still hard, don’t get me wrong, but the years of practice I had before I got here made it at least a little easier.

References:

About TCD / Information. (n.d.). Retrieved November 01, 2020, from https://www.tcdupage.org/domain/60

Living Life with High-Functioning Autism by Israel Sanchez

“You don’t look like you’re Autistic”, says every person that learns about my disability. It is

certainly ok to call the above quote a cliché, because it is. Just about any article that details the

experiences of someone with Autism has this phrase encoded somewhere in the text. That is for

good reason, because from first-hand experience, it's one of the only things that people could

muster up when they learn that someone has Autism. Although I absolutely HATE when people

tell me this, I sort of have an internal dopamine rush whenever someone tells me this. It lets me

know that I can control my disability to a point where it is no longer visible to the untrained public

eye. To get to this point means a lot not only for me, but also for my family and supports, who

put up with my, shall we say, difficult antics for the past 17 years. It took a lot to get to this point,

but I realize that it is important for me to transcribe some of the things that I went through. It’s

going to be somewhat embarrassing for me to relive moments that I would rather purge out of

my mind, but for the sake of advocacy and knowledge, I would get them out of the dark and dust

them off for you readers.

In sixth-grade, the desire to make friends started to manifest in me. Rather than make a nice,

modest set of friends, I decided that it would be better to become the class clown. So I decided

to pull a stunt that STILL makes me cringe to this day. This stunt was that I fell off of a chair in

front of the class. Nothing like physical comedy to rile up those crowds. Needless to say the

stunt didn’t work and only served to embarrass myself. Other antics include saying mindless

stuff in front of class, and telling stupid stories. Soon after middle-school and into freshman year

of high-school, this behavior started to stop. I became antisocial and absolutely mortified of

conversation. I thought that the moment I opened my mouth, I would become absolutely

despised. Whenever socialization would force itself on me, I would become overwhelmed, as if

socializing with someone isn’t supposed to happen to an autist like me. As the years of high

school elapsed, the desire to learn how to socialize became stronger. Although I continued to

avoid interaction, the urge to try it became harder to ignore. Finally, during my senior year, I

started to put in efforts to satisfy this desire. However, these efforts were somewhat menial, and

while I DID socialize with a few individuals, I definitely had more opportunities to make progress.

I would rarely take on opportunities to converse. I just wasn’t far enough from my comfort zone

to do so.

When I went to college, I was scared. I thought of college as this harsh place where professors

find joy in overwhelming their students with Stanford-level homework and tests. However, this

couldn’t be further from the truth. My professors were all relaxed and down-to-earth, and the

students there were nice. It was after attending my first ever college class where I finally

escaped the shell that has debilitated my ability to socialize. I not only began conversing more

frequently, but I actually began to ENJOY talking to people. No longer did I turn off people after

conversations.

Now, as I am writing this blog and shuddering from the remembrance of

embarrassing stories, I feel as though I have found the recipe to enjoy life while incorporating

my disability into my personality. I used to absolutely ABHOR my disability, and scrutinize ways

to completely eradicate it from my persona. But now, with the help of LEND and social

acceptance, I grew to not only let it be, but also to accept it as a part of me. Although I continue

to struggle with sensory overload and hyperactivity, I know that all of the fascinations and

manifestations are a part of me. I hope you took my experience to heart, and use it to educate

yourself and the public about Autism.