Spectrum (T1DM): How Research Can Help Autistic Children with Type 1 Diabetes by Annanda Batista, Nursing Trainee

In 2017, I started my Ph.D. application process, and my focus was only on self-management support for children and adolescents with type 1 diabetes. Meanwhile, I was watching a TV show called “Parenthood,” and the story of Max Braverman touched me. The autism storyline follows the family’s journey to accept Max’s diagnosis and support him while dealing with their own emotions. The show focuses on life with a developmental disability. It changed the route of my Ph.D. proposal. I began to think about the challenges of autistic children or adolescents to manage type 1 diabetes (TID).

I started to search in the scientific literature about this population. There was no article in any database about autistic children and T1D. How would I justify my research topic if there is no scientific publication on this topic? A reflection came to my mind: a scientist needs to go to the population to know their needs better when no data is available. It is not only articles published in journals that provide validation of a topic; it is also the population or individuals themselves. Thus, I began my search for blogs and support groups on social media and found families with autistic children with type 1 diabetes that were forgotten by the scientific community.

This population needed healthcare professionals that knew both conditions. During our conversations, mothers reported that their children faced unique challenges in managing T1D because of their social communication challenges of autism, such as self-care related to the insulin application and regulation, diet change, knowing and asking for help in hypo and hyperglycemia, and health education. Building a trustful relationship with healthcare providers is also a challenge because these professionals did not provide educational orientations about both conditions together.. I realized that these reports would be my justification. They are important! This population needed attention.

Therefore, my Ph.D. proposal focuses on identifying the self-management needs of autistic youth with T1D and ASD in order to develop new technologies to meet needs of both these conditions. Research is done to help communities to improve their health and ask them what they need. Knowing what the population really needs is essential as well as any report in a published article. Researchers need to be closer to their study population.

Occupational therapy—what is that? By Mackenzie Jaekel, OTR/L

I am an occupational therapist (OT) and I am passionate about what I do. However, I’m aware that a lot of people don’t know exactly WHAT it is I do. I spent a good deal of graduate school explaining to my loved ones “no, I am not a physical therapist, no, I don’t just help kids find jobs, no, I won’t look at your arthritis in your hands, and no I am not just the handwriting lady”. But it isn’t their fault that they have trouble keeping it straight. OT is an incredibly broad field that works with a multitude of populations and settings. In addition, the definition of occupation according to Oxford language dictionary, is “a job or profession”. It’s not as descriptive a name as say a firefighter or, yes, a physical therapist.

So what is OT? The key to this question lies in the more niche definition of occupation, defined by the field of OT as “Everyday personalized activities that people do to occupy time and bring meaning and purpose to life” (AOTA, 2020). While occupations, according to OT, do include work or job tasks, they also include brushing your teeth, reading a book, and driving a car. Occupational therapists then help people do these meaningful activities, or occupations, when challenges or barriers prevent their completion, for example, in the presence of disability.

For example, I work in the school system with kids who have trouble with one or more “occupations” during their school day including but not limited to handwritten homework, ordering lunch, and playing on the playground. This usually requires me to do a task analysis to decide what the barriers are to the activity and whether we can modify or change the environment, the task itself, or a person factor to overcome that barrier.

So yes, an OT may work with a transition age student to find a job placement in the community. Yes, an OT might co-treat with a physical therapist or treat arthritis if motor difficulties are impacting everyday activities. And yes, an OT may work on handwriting because it impacts a child’s participation in the classroom. If you want more information, make sure and ask your friendly neighborhood OT or check out the resources below! We know it can be confusing, trust me, you will not be the first one to ask. 

Pictured above are five frosted cookies in a circle decorated with a brain, a rainbow infinity sign, a wheelchair symbol with a heart instead of a wheel, plants, and adaptive equipment. In the middle is a 6th cookie that says OT. Cookies made and photo taken by me, Mackenzie Jaekel (baking is one of my favorite occupations).

Additional Resources

American Occupational Therapy Association Description

Description tailored to parents  

Description tailored to kids

Cooking and Mental Health do Mix by Ghada Abdalla, Social Work Trainee

As a young, energetic mother, I felt unstoppable, that I could do anything and deal with any challenge that I faced, but no one prepared me for the effect of harsh words about my child and my choices in raising him. Or the lack of resources.

While I used to work with families challenged with Autism, being on the receiving end of the diagnosis gave me a completely different perspective and a tremendous insight. I remember the day that the therapist said, “he is too fast for any information to sink in; there is nothing that I can do with him.” I was puzzled and wondering what I would do now. I tried a behavior approach to get to my child, but he was not that interested at that young age. I searched for other things like changing his diet and did not notice any change.

 Then I remembered that one of my best conversations with my mom was when we were cooking, so that is what I did.

Cooking was one of the most valuable things that worked with my son that slowed down his ADHD and cooled down his Autism. Cooking was the only time we could have some verbal communication, the only time he was listening. Incorporating the behavior aspect and speech was great and had a great outcome. He still has things that he can’t touch and food that he can’t smell. But even with these challenges, it is still so rewarding. From my experience, I had to keep track of what smell to avoid and how the light should be, what he can tolerate, and whatnot. While I was searching, I found two excellent websites that explain what to do with each of the challenges.

https://thewebaddicted.com/lifestyle/improve-life-and-social-skills-in-the-kitchen/

https://orkidideas.com/cooking-skills-children-with-autism-sensory-issues/

 I started to bake with him to make our cookies and pasta, our pastry, and treats. Even asking friends to come and we can describe what we are doing, how it feels and what we can smell. I even found out now that some support groups do the same thing.

 In this video, they are talking about this experience. What did I cook? 

Autism and Cooking: A Sensory Experience

I researched more about it and found some research on this subject and the positive effect of cooking on children, especially children with Autism. There are many benefits of cooking with children with Autism, such as facilitating social-emotional development, practicing fine motor and executive functioning skills, and improve a variety of food choices. I also found two websites that talk about the benefits of cooking for people with Autism. It helps strengthen their social and emotional development by allowing them to socialize and build a connection with others over food. Cooking also enhances their fine motor skills while they are slicing, stirring, and kneading the dough. Also, it exposes them to a different variety of food choices, and it improves their ability to follow directions, whether it is verbal or writing. And last cooking teaches the importance of cleanliness.

In this journey, I found joy in spending time cooking with my children, and I hope that you do too. 

Resources about cooking: 

https://www.cookingautism.org/about

https://www.sdautismhelp.com/blog-autism-special-needs/4-benefits-of-cooking-with-your-child-with-autism[AK4] 

GHADA ABDALLA

A Call to Action: Disability Justice in a Social Work World by Social Work Trainee, Nahime Aguirre Mtanous

This week, I began my last year in my Master’s in Social Work (MSW) program at the University of Chicago’s Crown Family School of Social Work. In my time there, I have been able to lend disability justice, culture, and advocacy efforts to social work scholarship easily. And yet, the field of social work has yet to adopt disability justice pedagogy to its curriculum. With the rise of racial unrest of the 2010s to now, we have seen the social work profession work to align itself as radical by adopting anti-racist and decolonization strategies in its curriculum. Among these ideas, radical social work also teaches the importance of understanding how hypersegregation and resource inequality play a part in the development of people. Furthermore, the ideas of a livable wage and housing security are taught to future social workers to illustrate the goals that contemporary activists work to achieve the goals of a social work education.

All of these different pieces of social justice work taught to MSW students aim to help students understand the populations that regularly seek supports without specific instruction on how they interact with the disability community. People with disabilities are at higher risks of needing social justice work in receiving services. How can MSW students hope to do actual social justice work if their education does not teach them the intersection of all the previous components by centering disability justice education?

The disability community is rich in examples of how people performing radical social work can truly provide supports for disabled folk. Social workers are already taught how to function in interdisciplinary teams; shouldn’t they also know about how to provide care coordination in anti-ableist ways? As disability activism shifts from a disability rights framework into seeking anti-capitalist disability justice, shouldn’t social workers know how to work within those frameworks? Shouldn’t social workers know how to apply anti-oppressive practices that disabled people have and continue to experience through an educational approach instead of a #FreeBritney Twitter thread detailing the lack of bodily autonomy adults with disabilities experience?

Special topics within the disability community like right to marry, benefits determinations, subminimum wage work, etc., should be a required curriculum component that future social workers should not miss in their education. All social workers should be able to help support the self-determination of people with disabilities in order to provide anti-ableist disability justice.

Premature Infants and Parent Reactions by Johana Machuca, SLP Trainee

Last week on one of my rounds, a student described the case of Patient A, who was born at 32 weeks gestation. We went over when speech therapy took place, what happened during treatment, and some of the improvements being made by the baby. I remember feeling upset about all the things the baby was missing by being in an incubator such as not being exposed to language and being overstimulated by all of the noise coming from the incubators. Still, the one thing that affected me the most was when a student asked the presenter how present the parents were in this interaction, whether by phone or in person. The presenter’s response: they were not present at all.

I felt frustrated and upset that the parents would not go see or call to check up on their baby. I know I am not a parent, but I have a sister who was born prematurely at 33 weeks when I was 15. My parents would leave every morning to go to the hospital every day for two months straight to see her for a couple of hours. I talked to my mom about the rounds presentation, and she mentioned how a week after giving birth, the doctors were going to perform a different procedure on my sister. My dad was at work and could not take my mother, so she got on a bus and walked the rest of the way to the hospital. The doctor commented on how a family member of my sister had shown up within a few hours. He then pointed to all the other babies in the room and mentioned how none of the parents had visited or even called to see how their babies were. Not even called to check-in to see how their baby was doing. 

I know that these are just two occasions in which parents have not been present, and it should not be generalized to everyone, yet I still think about all of the babies who do not have their parents' support. There is not much research about the interaction of parental visits in the NICU, but I was able to find common parent reactions to the NICU. Reactions summarized in the article healthychildren.org (cited at the bottom) include…

- Fear of the unknown

o   Parents might feel uncomfortable with the NICU environment, or they might fear what their families think about the birth. 

- Anger 

o   Parents might feel angry at the hospital staff or at not having the birth experience that they expected. 

- Guilt

o   Parents might ask what they did to cause this? Or how they could have prevented this.     

- Loss

o   Not having a full-term infant may lead to feelings of loss of what was expected. They might also feel the loss regarding the parenting role. 

- Powerlessness

o   They feel like they cannot do anything for their baby as their baby is surrounded by the high-tech technology.

- And Feeling on Display

o   Parents might feel like a fish in a tank since in the NICU, one is usually sharing space in a large room.

This has allowed me to empathize more with parents and comprehend more of what they are going through. The thought of parents not visiting their little ones still upsets me, but I try to think about how the parents are feeling and the toll having a baby in the NICU is taking on them.

For more information regarding common parent reactions:

https://www.healthychildren.org/English/ages-stages/baby/preemie/Pages/Common-Parent-Reactions-to-the-NICU.aspx

For research regarding parental visits in the NICU:

https://jamanetwork.com/journals/jamapediatrics/fullarticle/485877

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3700586/  

A call for thorough shoveling…and enforcement of the ADA by Sarah Weldy, OT Trainee

Personally, I have never felt quite so humbled as when I had to think about curb cuts for the first time. Have you ever had to think about curb cuts? What is a curb cut, you ask? You know, where the curb…cuts down so the sidewalk meets the street without the bump of the curb. Here, I’ll just show you:

Curb cuts are well and good, because they make the sidewalk accessible to someone in a wheelchair or using a walker. Fantastic, right? The bad news is that in the cold Chicago winters, this tends to happen:

Rarely does someone shoveling the sidewalk think to clear the entire curb cut to the street; they usually just let people with use of their feet sort of climb over the mound of snow that has been shoveled into a mountain right where the curb cut occurs.

I am embarrassed to say that in my life I never thought about how this would affect someone using wheels for mobility, at least not until I was the personal assistant for someone with a neurodevelopmental disability who used a wheelchair. It is difficult to convey how frustrating it was for the two of us to make plans to go out, seeing mostly clear sidewalks and plowed roads, only to realize that we could not get over the curb cut at the end of a sidewalk. Sometimes we rerouted and found a new way. Sadly, other times we simply could not, and turned back.

Now at this point you may be asking yourself, who is this woman who is so angry about curb cuts, and what is her point?

Well hello there, my name is Sarah Weldy, and I am an occupational therapy student and trainee with the UIC LEND program. And for one, I want people to show some respect to the community by shoveling their sidewalks thoroughly! But more than that, I want to talk about the ADA.

The Americans with Disabilities Act was passed in 1990 and marked the beginning of accessibility in our country. There have been many positive, progressive effects of the ADA – it was a victory for it to be passed. As the ADA National Network describes: “the ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public.”

BUT –

Systemically, we see the ADA not being properly enforced. As you dive into the world of disability, you are sure to find how the follow through on this legislation has been less than enough. For example, the ADA requires accessible walkways so the city puts in curb cuts – but then doesn’t clear the opening when it snows. I am sure you can imagine a whole flurry (no pun intended) of other situations where the ADA should be able to remove physical barriers – but it extends to intellectual and developmental disabilities too! When it is expensive or inconvenient, individuals, businesses, schools, counties, and towns often simply do not put in the effort to be adherent with the ADA – whether making a ramp for a wheelchair user or giving someone extra needed time to complete a task. And I do not know about you, but until I was immersed in disability advocacy, I simply assumed that everyone was adherent!

As a future occupational therapist, I see it as my responsibility to educate people on this issue and help make change. Within my field, we heavily consider how the environment a person is in can be modified to make their life more fulfilling. Since I am not a lawyer, I will not personally be able to sue negligent organizations that are harming my clients… but I can educate clients on how to self-advocate and yes, seek legal counsel. I can write letters to my local politicians and advocacy groups when I see something wrong. And you can too, in fact, to start you off I want you to bookmark this fantastic organization, Access Living, that is Chicago-based and has a civil rights issue hotline email…with three cases cooking right now!

And lastly, you better believe I will shovel my curb cuts. Oh, will I shovel. Will you join me?

References:

Image 1:Wikipedia.org/curbcut

Image 2: cortlandstandard.net

https://adata.org/learn-about-ada

https://www.accessliving.org/our-services/legal-services/

The Issue of Bullying for Students with Disabilities by Rex Li, Special Ed Trainee

Many students who witness bullying believe they do not have the means or power to stop it. While they might not have been directly harmed, it still contributes to the mounting sense of fear and powerlessness in our schools. Bullying and cyber-bullying are some of the most prevalent issues throughout schools in the United States1. Although bullying does not discriminate by gender or race, it however certainly affects students with disabilities at a much higher rate than those without2. Moreover, whether a student is being bullied, participating in bullying, or is simply a bystander to a bullying occurrence, the devastating effects it causes nonetheless disrupts the overall learning environment from remaining as a place of safety and respect for all.

Despite the disproportionality in bullying towards students with disabilities, research has shown that this effect could be moderated by several factors3. Specifically, the combination of personal, school, and community factors all play a role in influencing bullying behavior and victimization rates. For example, educators who are more cognizant of disability characteristics and encourage social awareness are one of the prime influencers in reducing bullying prevalence within the classroom setting4. Furthermore, it is important for stakeholders involved with a student’s education to collaborate in fostering a culturally and socially competent environment that is inclusive of all students. Finally, professionals and caregivers can initiate this by providing children with the understanding the impact they can have on their peers and encouraging them to make a difference.

Below are some additional tips you can impart to students to prevent bullying:

·       Say “Hi” or smile at someone in the hallway.

·       Talk to someone in your class that you have never spoken with before.

·       Join your school’s anti-bullying club, if you don’t have one, start one!

·       Invite the person who is usually alone to play together or sit with your group.

To learn more about behaviors, signs, and strategies on bullying, visit the following resources:

·       StopBullying.gov

·       PACER's National Bullying Prevention Center

·       National Education Association

JOIN THE MOVEMENT

October is the National Bullying Prevention month which unites communities
nationwide to educate and raise awareness of bullying prevention.

Rex Li, M.A.

Doctoral Student, Department of Special Education

University of Illinois at Urbana Champaign

References

1Raskauskas, J., & Modell, S. (2011). Modifying anti-bullying programs to include students with disabilities. Teaching exceptional children, 44(1), 60-67.

2Rose, C. A., Swearer, S. M., & Espelage, D. L. (2012). Bullying and students with disabilities: The untold narrative. Focus on Exceptional Children, 45(2), 1-10.

3Rose, C. A., Monda-Amaya, L. E., & Espelage, D. L. (2011). Bullying perpetration and victimization in special education: A review of the literature. Remedial and special education, 32(2), 114-130.

4Swearer, S. M., Espelage, D. L., Vaillancourt, T., & Hymel, S. (2010). What can be done about school bullying? Linking research to educational practice. Educational researcher, 39(1), 38-47.

5Pellegrini, A. D., & Long, J. D. (2002). A longitudinal study of bullying, dominance, and victimization during the transition from primary school through secondary school. British journal of developmental psychology, 20(2), 259-280.

6Pellegrini, A. D., Bartini, M., & Brooks, F. (1999). School bullies, victims, and aggressive victims: Factors relating to group affiliation and victimization in early adolescence. Journal of educational psychology, 91(2), 216.

7Nansel, T. R., Overpeck, M. D., Haynie, D. L., Ruan, W. J., & Scheidt, P. C. (2003). Relationships between bullying and violence among US youth. Archives of pediatrics & adolescent medicine, 157(4), 348-353.

8Van der Wal, M. F., De Wit, C. A., & Hirasing, R. A. (2003). Psychosocial health among young victims and offenders of direct and indirect bullying. Pediatrics, 111(6), 1312-1317.

9Olweus, D. (2013). Victimization by peers: Antecedents and long-term outcomes. In Social withdrawal, inhibition, and shyness in childhood (pp. 325-352). Psychology Press.

10Juvonen, J., Graham, S., & Schuster, M. A. (2003). Bullying among young adolescents: The strong, the weak, and the troubled. Pediatrics, 112(6), 1231-1237.

11Oliver, R., Hoover, J. H., & Hazler, R. (1994). The perceived roles of bullying in small‐town midwestern schools. Journal of Counseling & Development, 72(4), 416-420.

Inclusive Transition Programming: Who is Really Included? by Sarah Deangelo, Special Ed Trainee

You may have heard the term “College is not for everyone…” and I suppose that really is true.  I am not here to force anyone into my preferred existence of being in school forever. I don’t believe that anyone should have to go to college if they do not want to.  I also believe that anybody who wants to go to college should have that opportunity, and that includes students with intellectual disabilities. 

              “How can that work?” you might ask.  Well let me tell you, that was probably the exact same question teachers in public elementary and secondary schools were asking in 1975 when the Individuals with Disabilities Education Act (IDEA) was passed, mandating that students with disabilities have the opportunity to be educated in public schools.  Just like much of public special education programming, college may look a little different for students with intellectual disabilities, but that doesn’t make it any less valuable. The social value of inclusion in age appropriate and natural environments for young adults with disabilities alongside their peers cannot be ignored.

              Fifteen of these programs for students with intellectual disabilities exist in the state of Illinois to date, and hopefully the number is growing.  This was made possible by the Higher Education Opportunities Act (HEOA) of 2008, which created opportunities for students with intellectual disabilities to attend institutions of higher education alongside their nondisabled peers. Students in these programs have opportunities to learn academic, vocational and daily living skills in a more inclusive environment than is offered in many other types of transition programming.

              You may now be thinking, “Well now this seems a little too good to be true,” and my answer to that would be “Well no, but also yes.”  There is no shortage of caveats to these programs.  The first being, like any college in the U.S., they cost money. How much varies, and there are some ways around this…however chances are families will end up paying at least something in some way for these programs. Another caveat is that they are somewhat exclusive.  I know that sounds counterintuitive for a whole genre of programming built on the premise of inclusivity, but unfortunately it is not inclusivity for everyone.  It is generally inclusivity for students with intellectual disabilities but no behavior problems and above a third grade reading level, so I suppose we can use the term inclusive with a bit of a grain of salt here. 

              Despite these caveats, I think these programs are really promising and really exciting.  I think they signal the start of a more inclusive future for all people with disabilities.  They may not be the pinnacle inclusive transition programming models, but they are a good start. 

Students talking about how inclusive transition programming has benefitted them.

For more information on college programming for students with intellectual disabilities visit

https://thinkcollege.net/

For more information on how you can access funding for these programs visit

https://lesley.edu/article/paying-for-a-transition-program

Self-Care in Graduate School by Hope Sparks, Disability Studies Trainee

I just finished the third week of my Ph.D. program! Part of being a Ph.D. student involves working as a research assistant, which I’m currently doing at a family clinic on campus. I recently had an eye-opening conversation at the clinic surrounding self-care, and how vital it is to take care of ourselves as individuals to be better students and employees.

Academia is hard, and I don’t just mean the classes! Sure, coursework can be difficult, but it’s unlikely that someone who is pursuing a graduate degree dislikes the subject matter. The true challenge is learning how to prioritize our well-being while also maneuvering a unique, isolating path. It’s strange being the one friend who’s still “going to school” and having to constantly answer “But what exactly do you do?”. To make it harder, that confusing path falls within an overarching system of oppression. [AK1]  I consider myself very lucky to be in the field of academia, but the field historically only benefits certain individuals, and intentionally disadvantages other individuals based on their identity (Which could be gender, race, disability, etc.) which keeps dominant groups in power. It can be difficult to acknowledge the flaws of a system that you’re directly supporting and benefitting from, but higher education needs to hold itself accountable to improve.

Being on the confusing path can also lead to mental health concerns. More than 30% of graduate students screened positive for depression or anxiety during the COVID-19 pandemic (Chirikov et al., 2020). Research has also found that in 2019, 1 in 3 college students faced food insecurity (Laska et al., 2020), which has likely become even worse due to the pandemic. These statistics prove how difficult it currently is for graduate students to prioritize self-care. Facing a global pandemic and food insecurity leads to our priority being survival, not bettering ourselves, or preventing burnout. Also, these overarching, disheartening statistics don’t acknowledge the oppression[AK2]  of other aspects of graduate student’s identities (gender, race, ability, etc.), both within the field of academia, and within society at large.

In addition, imposter syndrome (believing personal success isn’t deserved or legitimate) runs rampant in graduate school, which further impacts mental and physical health, and stress levels. Everyone in academia faces imposter syndrome, but to combat it we must be as kind to ourselves as we would be to our peers.

All this to say, academia is hard, but taking care of ourselves currently might be even harder! The conversation I had recently illuminated how necessary it is to set boundaries. Working from home has made it that much harder to shut off at the end of the day.

But we’re academics, researchers, and clinicians. We’re not robots. We need to acknowledge how much control we truly have over a situation, or the systems we work in, and how much control we don’t have. The conversation illustrated that being able to say “no” sometimes and living a life outside of the ivy walls is a gift. No one makes the space for you but you. So, pick up the new hobby! Start taking the Pilates class! Turn off your phone’s email notifications during the weekend (or maybe all the time!).

I am incredibly thankful for that conversation I had about self-care and thankful to be in a department that values self-care. I’m hopeful that acknowledging and trying to respect these boundaries and tools early on will help me throughout my progression in my program. I’m also hopeful that writing about them for the blog helps you too!

References & Resources

Chirikov, I., Soria, K. M, Horgos, B., & Jones-White, D. (2020). Undergraduate and Graduate Students’ Mental Health During the COVID-19 Pandemic. UC Berkeley: Center for Studies in Higher Education. Retrieved from https://escholarship.org/uc/item/80k5d5hw

Laska, M. N., Fleischhacker, S., Petsoulis, C., Bruening, M., & Stebleton, M. J. (2021). Food Insecurity Among College Students: An Analysis of US State Legislation Through 2020. Journal of Nutrition Education and Behavior, 53(3), 261–266. https://doi.org/10.1016/j.jneb.2020.11.010

The National Equity Project’s explanation on the lens of systematic oppression: https://www.nationalequityproject.org/frameworks/lens-of-systemic-oppression

 [AK1]Unpack this a little for context

 [AK2]Within or outside academia or both?

Finding your Superpower by Xinyi (Emily) Zhou

When I did my pediatric neuropsychological assessment practicum, the most unforgettable moments were my supervisor’s feedback sessions to our young patients (ages 3-18). The children we saw were commonly referred to neuropsychological testing due to concerns for neurodevelopmental disorders (e.g., ADHD, ASD), learning disorders, and complex neuro-related medical conditions (e.g., brain tumors, epilepsy, traumatic brain injury). After administrating 6-8 hours of testing and writing up 10-20 pages reports, my supervisor always said “here comes the highlight of the event”, that is, the feedback session. Regardless of the diverse clinical presentations and diagnoses, she would draw a superhero with strong muscles and showed the picture to the kids, “do you know what we found in our testing? Do you know you have superpower? Has anyone ever told you that before? Let me tell you what we found in our testing results, our data shows that you have superpower in…”. In that moment, you can’t imagine how bright the kids’ faces became, their posture changed (for instance, they would lift up their heads higher), their eyes glittered with confidence, and their smiles became as brilliant as sunshine.  The superpower metaphor affirmed and empowered these young patients especially when these comments were made in front of their parents! More importantly, these “superpower” comments are not merely encouragement out of good intention, they are also supported by data.

Some autistic individuals have extraordinary ability in cognitive domains required by engineering or architecture such as visuospatial reasoning, visual perception, or visuospatial construction. In a similar sense, some people like to identify some children with ADHD as a Ferraris whose minds run very fast. Media often deifies people with disabilities (e.g., Shaun Murphy in the show “good doctor”). Gifted individuals do exist in clinical settings, yet people are gifted in different ways and often their gifts may not as obvious (e.g., academic achievement).  One of our jobs as psychologists is to discover the gifts of the young people we see.

However, the most interesting thing is, no matter how distressing the overall data seems, no matter how long the list of diagnoses is, no matter how severely functions are impaired, there is always a strength that stands out. We only need an eye to see, an eye with hope, an eye with love, and an eye with belief. Once I saw a boy whose testing data showed that his performance on most cognitive domains and social skills fell into exceptionally impaired range and multiple of his family members had disabilities. I struggled with how to share these results with the family and the child and how to convey a message with hope. My supervisor reviewed the datasheet and said with a face of surprise, “look at his scores on behavioral and emotional function and imagine the stress in his daily life”. When I imagined how heavy the burden he carried every day, it is indeed amazing that he had the ability to regulate his emotions and monitor his behaviors well in the midst of chaos. It was a big comfort for the exhausted family while they struggled with inadequate resources and supports from the bigger societal system. When we take a microscopic scrutiny on our lives and other people’s lives, we will find many “superpowers” we possess that we may have taken for granted.  

Multilingualism and Autism: A primer for professionals

Parenting a child who has recently been diagnosed with Autism can be overwhelming.

There is often an influx of new information and decisions to be made. Such as, should I put my

child in therapy? What sort of therapy? What is an IEP? Will putting a ‘label’ on my child harm

their future? Some questions may never have a clear-cut answer and will depend on a family’s

values and resources. However, one question that all professionals should answer for parents is:

Can my child learn English in school and keep speaking Arabic/Korean/Spanish/etc. at home?

Your answer should be YES!

Children with autism can absolutely learn multiple languages. There is no substantial

evidence that a child with autism may be negatively impacted by learning more than one

language 12 . Nearly one-quarter of all households in the state of Illinois speak a language other

than English, and worldwide, 2/3rds of the world’s population speaks at least two languages.

Multilingualism can be a great gift that opens someone’s life to new experiences and

opportunities. Research has shown that children with Autism and other developmental

disabilities may experience “bilingual benefits.” These are well-documented cognitive

advantages found in typically developing bilingual adults and children.

Advising a family against maintaining their heritage (home) language may negatively

impact caregiver and family member’s ability to comfortably and fluently engage with their

child 34 . Family members are a child’s first and most influential teachers! Advising multilingual

family members to only speak English to their child may lower the quality of interactions

between them and the child. We know the importance and benefit that high-quality interactions

with a caregiver can have on a young child’s language and social development. Also, if a child

does not learn the language of their community, this may decrease their future opportunities to

meaningfully engage with their peers, cousins, and extended family and friends. Please help the

families you work with to engage with their children in the most comfortable and meaningful

language for them.

I encourage my fellow professionals to help families find a support system in their native

language as much as possible. Also, be aware that families may have been falsely told by other

professionals that multilingualism may negatively impact their child’s learning and development.

This is a myth! Encourage and practice evidence-based decision-making and inform your

colleagues of the benefits of multilingualism too.

Melanie R Martin, M.A., BCBA

PhD Student in Special Education at University of Illinois at Urbana Champaign

(Image description: A young child’s hands rest over a globe. North and South America are

visible.) (Stock image found through Microsoft word.)

1 Wang, M., Jegathesan, T., Young, E., Huber, J., & Minhas, R. (2018). Raising children with

autism spectrum disorders in monolingual vs bilingual homes: A scoping review. Journal of

Developmental and Behavioral Pediatrics, 39(5), 434–446.

https://doi.org/10.1097/DBP.0000000000000574

2 Uljarević, M., Katsos, N., Hudry, K., & Gibson, J. L. (2016). Practitioner Review:

Multilingualism and neurodevelopmental disorders – an overview of recent research and

discussion of clinical implications. Journal of Child Psychology and Psychiatry and Allied

Disciplines, 57(11), 1205–1217. https://doi.org/10.1111/jcpp.12596

3 Papoudi, D., Jørgensen, C. R., Guldberg, K., & Meadan, H. (2020). Perceptions, experiences,

and needs of parents of culturally and linguistically diverse children with autism: A Scoping

review. Review Journal of Autism and Developmental Disorders, 2017.

https://doi.org/10.1007/s40489-020-00210-1

4 Lim, N., O’Reilly, M. F., Sigafoos, J., Ledbetter-Cho, K., & Lancioni, G. E. (2019). Should

heritage languages be incorporated into interventions for bilingual individuals with

Neurodevelopmental disorders? A Systematic Review. Journal of Autism and

Developmental Disorders, 49(3), 887–912. https://doi.org/10.1007/s10803-018-3790-8

My Teaching Journey

I often get asked about my journey into the Special Education field. Many people are surprised when they find out that it was my lack of experience and knowledge that led me to the path that I am on today. I began my career in a general education classroom, as a kindergarten teacher in the city. I distinctly remember having two students with autism spectrum disorder (ASD), a disorder I knew absolutely nothing about. Because of their IEPs, these students (whom I will name D & E) would only spend a part of the day with me, and when they entered my classroom, they would always sit in the corner of the room, with an assistant helping them with daily activities. I remember thinking how little I knew about their disability, and how much I yearned to support them, beyond what I was already doing. I remember writing on the white board during Math lessons, and turning around and looking at them, looking at me. It was during those moments that I felt inexplicably connected to them, as I reflected upon how incredibly unique each of them were; how their diagnosis was the only thing they had in common, because their personalities, wit, and abilities varied greatly. I began by reading more about ASD, in an effort to help them, but my goal shifted as I strived to know D & E as individuals, apart from their disability, and the more time I spent with them, the more I realized just how capable they are as individuals. The more I got to know them, the more I loved them, and the more that I continued to seek knowledge to be a better educator and a more compassionate human being. My passion for education led me to pursue a Master’s Degree in Special Education (with an emphasis on ASD), and now a PhD in the same field. I currently work as a special education teacher and my research is centered on supporting students with autism in general education classrooms, and with every encounter that I have with a new student, I remember D & E. Everything that makes me who I am as an educator today is because of them.

Since entering that school, I’ve worked in several other schools, gaining experience in self-contained and general education classrooms, as I worked with students with different disabilities. Looking back, I know that I learned more from my students at that school than I could ever learn from anyone else. Those students-the ones who had meltdowns, the ones who were nonverbal, the ones in wheelchairs, the ones who struggled writing their names- they were the ones who taught me how to teach. They taught me that they were not defined or limited by their circumstances. They taught me to look beyond what the eye sees. They taught me that good teaching is giving each student access to the resources they need to access their learning environment. And most of the time, that means giving students different tools to succeed both in and out of the classroom.

It has been years since I’ve seen D & E. Much has changed in my life, but I have never forgotten their impact on me, and I hope to someday share this story with them. My philosophy centers around the belief that each individual we encounter is worthy of respect. And as I heard in an autism seminar, “the key to being comfortable around an autistic person is to know that under each veil of autism there exists an intelligent being with the same emotions you have.” As an advocate for individuals with disabilities, I hope to increase access to inclusion, and provide a better understanding of the word "disability;" one that is neither positive nor negative, but one that promotes the idea that the individual with disabilities is unique, as opposed to them being seen as being "less than" or "deficient" as they are sometimes seen in the medical sense. Most importantly, I embrace the perspective of the social model of disability in my everyday practices and beliefs, because although a person's disability poses some limitations in an able-bodied society, it is often the surrounding society and environment that proves to be more limiting than the disability itself: “There is no greater disability in society, than the inability to see a person as more” (Robert M. Hensel). It is up to us educators to “to teach in a manner that respects and cares for the souls of our students...if we are to provide the necessary conditions where learning can most deeply and intimately begin” (Bell Hooks).

For more information on how to support individuals with ASD, please visit:

https://corescholar.libraries.wright.edu/cgi/viewcontent.cgi?article=1153&context=ejie

https://journals.sagepub.com/doi/pdf/10.1177/2396941518804407

https://www.tandfonline.com/doi/pdf/10.1080/02673843.2018.1433695?needAccess=true

https://www.tandfonline.com/doi/epub/10.1080/09687599.2019.1594700?needAccess=true

https://www.readingrockets.org/article/supporting-students-autism-10-ideas-inclusive-classrooms

https://www.scholastic.com/teachers/articles/teaching-content/teaching-students-autism-spectrum-disorder/

The Fight Against Early Inequality by Feresha Patel

Most healthcare professionals who work with the pediatric population are aware that the first few years of life are a critical period while a child’s brain is quickly developing and the most neuroplastic.  There is existing evidence indicating that inequalities between races exists in the early intervention (EI) program. A 2019 report highlights in detail the inequalities in New York State’s early intervention program. Due to funding from New York State there are major racial and socio-economic disparities in access to EI services. There are several problems that are highlighted. 

• In 2018, 1 out of every 4 children who were found eligible for EI services in NYS did not receive services in the necessary time frame. 

• Lower income communities are consistently the least likely to receive evaluations after referral to EI services. 

• The neighborhoods where children were found to be eligible for EI services and are least likely to receive them are primarily low-income communities of color

• To further this, in neighborhoods where there are higher rates of eligibility the black children are less likely to receive services. 

There are two drop off points that were found: referral to evaluation and eligibility to receive services. On average the drop off rate between referral and evaluation is 11.9%, what is significant is that when you break it down by race there is clear inequality:

• 11.3% Asian

• 16.5% Black

• 12.7% Hispanic

• 11.1% White

The average drop-off rate in NYC between evaluation and receiving services is 5.4%. This again varies based on race:

• 5.7% Asian

• 6.8% Black

• 6.3% Hispanic

• 3.9% White

This report suggested steps that both state and city leaders could take to address these early inequalities. New York as a state should consider increasing rates for EI workers. The state should fund a cost-study to assess and recommend changes to improve payment to help address the low capacity of workers in low-income and underserved communities. They should consider policy changes that make sure health insurance companies pay their share to help cover EI services. They should conduct a statewide analysis of disparities in access to evaluations and services for EI and implement a quality improvement plan.

The city should issue an annual public report on the provision of EI evaluation and services so the public can hold the city and state accountable for addressing disparities and children getting their mandates met. The city should analyze the disparities in EI services and evaluations and create a plan to address the problems. This could be anything from training service coordinators on cultural competency to following up with families better. 

On a personal level what we do? We can all check our implicit and unconscious biases.  Do we have any prejudices that are embedded from society? Before refusing a case based on the zip code, remember that these children need services.  This report is critical for other states and cities to look at and consider allocating funding to assess if their state and cities also have inequalities. By addressing these early inequalities, lives of many children and families will be improved leading to overall improved quality of life and improved future outcomes. As early intervention providers, we must be aware of the disparities in our state and advocate for that change. 

Access the Full Detailed Report at the Link Below:

https://cccnewyork.org/new-report-details-inequality-in-states-early-intervention-program/

Reference 

Early Inequalities How Underfunding Early Intervention Leaves Low-Income Children of Color Behind. (2019, December). https://s3.amazonaws.com/media.cccnewyork.org/2020/12/OAyzWd1P-EI-Report-FINAL-12-4-19.pdf

Ableism in Our Own Ranks by Donna Azcuna

In a recent study that examined physician perspectives related to people with disabilities (Iezzoni et al., 2021), results indicated that 80% of physicians believe that people with significant disabilities have a worse quality of life than those without disabilities. Furthermore, only about 18% of physicians believe that the medical field is unfair towards those with disabilities. 

I am currently training to be a pediatric psychologist and have the privilege to work with children with disabilities and their families to address behavioral health concerns that may arise when coping with a medical condition. In this role, I work closely with physician and medical teams. I was, like many medical and adjacent professionals (along with the entirety of the Twitterverse), frustrated by the results of this study – understandably so. Nevertheless, these results are not new, but merely a snapshot of the current situation. Ableism has been deeply engrained in the medical field for years. For the disability community, the results of this study confirmed many painful lived experiences. For medical professionals, it was a reflection of the many ways we have failed to address ableism in our own ranks. 

There are many questions that have been raised as a result of Iezzoni’s study – how did this happen? Who is responsible? How to we stop a culture of ableism in the medical field? As a graduate student, I reflected on my own experiences and the ways that ableism has been implicitly (or explicitly) engrained in my own psychology training. There have been very few instances of engagement with disability issues in the classroom, lack of relevant training or collaboration experiences with those with disabilities, and limited exposure to disability self-advocacy. There is a huge lack of representation of those with disabilities within psychology leadership and in the student population. Majority of psychology students are dissatisfied with disability-related training experiences (Green et al., 2009). I became interested in the question of who is responsible for preventing ableism in the medical and mental health field. Specifically, I am most curious about how we teach future mental health professionals to care about and utilize multicultural and social justice approaches in their work. Said another way, how do we teach students to be anti-racist, anti-ableist, anti-sexist, anti-xenophobic, anti-homophobic, anti-transphobic, etc.? 

I think one of the most important aspects in teaching future medical and mental health professionals is through the training environment, specifically, the social justice training environment. Graduate training is an incredibly formative time for future healthcare professionals. During this time, student attitudes, beliefs, and behaviors are highly influenced, especially related to multiculturalism and social justice. There are a few ways that graduate and medical programs can invest in anti-ableist education and training opportunities for their students (adapted from McConnell et al., 2021): 

1. Multicultural and social justice orientation infused throughout the training environment. This includes through teaching, education, relationships, modeling, etc., at every level of engagement.  

2. Inclusivity. There should be diverse representation throughout all levels – faculty, students, administration, leadership, etc. This means hiring diverse educators, recruiting students with intersectional identities – AND creating and fostering a culture that supports retention of these individuals. 

3. Identity. Encourage all persons to develop a multicultural-social justice identity. This should also include awareness of own intersectional identity, as well as engagement with personally meaningful reflection of power, privilege, and oppression in identity development (Caldwell & Vera, 2010). 

4. Opportunities. There should be practical and applied learning opportunities to engage in multicultural and social justice informed work. 

5. Collaboration. Healthcare services do not occur in a vacuum. Encourage students to collaborate with community organization to engage with anti-ableism efforts beyond the classroom (Viecili et al., 2010). 

These five examples provide only a starting place for programs to engage multiculturalism and social justice in the formation of their students. The good news is that there are so many great approaches and resources available! I hope that the results of Dr. Iezzoni’s study is a wake-up call for medical and mental health training programs to better engage anti-ableist perspectives and practices. 

A picture containing books, shelves, library; male student appears blurry in the background, wearing a backpack.

References:

Disability Visibility: First Person Stories from the 21st Century. Edited by Alice Wong. https://disabilityvisibilityproject.com/book/ 

Green, D., Callands, T. A., Radcliffe, A. M., Luebbe, A. M., & Klonoff, E. A. (2009). Clinical psychology students’ perceptions of diversity training: a study of exposure and satisfaction. Journal of Clinical Psychology, 65(10), 1056–1070. https://doi-org.ezproxy.wheaton.edu/10.1002/jclp.2060

Iezzoni, L.I., Rao, S.R., Ressalam, J., Bolcic-Jankovic, D., Agaronnik, N.D., Donelan, K., Lagu, T., & Campbell, E.G. (2021). Physicians’ Perceptions of People with Disability And Their Health Care. Health Affairs, 40(2), 297-306. 

McConnell, J.M., Liu, T., Brown, E.M., Fort, C.J., Azcuna, D.R., Tabiolo, C.A.M., Kibble, C.D.M., & Winslow, A.B. (2021). The multicultural peace and justice collaborative: Critical peace education in a research training environment. Peace and Conflict: Journal of Peace Psychology, 

Viecili, M., MacMullin, J., Weiss, J., & Lunsky, Y. (2010). Predictors of Psychology Graduate Student Interest in the Field of Developmental Disabilities. Journal of Mental Health Research in Intellectual Disabilities, 3(4), 190–201. https://doi-org.ezproxy.wheaton.edu/10.1080/19315864.2010.524725

Disability Lessons in Practice by Vanessa Peixoto Honorato

“When and how did I learn about this aspect of disability before here and now?” That was a question I often asked myself during an undergraduate course where I had my first contact with the field of disability studies. There, I realized I had informally learned so much about disability in the years prior to that: through harmful media representations I consumed since I was a child, through language that assigns negative meanings to disability, through inaccessible spaces and their absence of visibly disabled people in them.

Since that first disability course, I had the opportunity to continuously learn from, and with, self-advocates, family members of people with disabilities, and talented peers from my field and other professions.

As I continue to work with people with disabilities in different settings and move closer to becoming an occupational therapist, I often reflect on how to make sure I bring the knowledge I acquired into practice. Below are three notes I keep in mind to make sure the lessons I have learned inform my daily work to promote adequate, equitable, and culturally sensitive services to people with disabilities and their families.

Communication Matters - Do Not Make Assumptions!
Communicating in an empathetic way and the call for not making assumptions are recurring themes from conversations and lectures led by people with disabilities. Although it does not ask for much, it can make a great difference when working with people with disabilities: to communicate in a way that demonstrates attention, interest, and acknowledgement of the person who is there and their lived experience. Failures in interpersonal communication in healthcare can lead to many serious consequences, such as late diagnosis and procedural errors, and it is the main cause of medical-legal complaints (Taylor, 2020). When in doubt about something, do not assume the answer is known – ask.

Celebrate and Share Positive Depictions of Disability.
The prejudicial representations of disability in the media are extensive. Besides that, mainstream media often leaves disabled people out of its productions, with about 95% of the disabled characters in TV being played by non-disabled actors. Hari Srinivasan, a nonspeaking autistic young adult, wrote about how the few depictions of non-verbal disabled people in the media he had access to growing up were traumatizing, reinforcing negative stereotypes that contribute to the limited opportunities given to disabled people. In January of this year, as a response to the movie discussed in Sasha Micek’s blog post, the organization CommunicationFIRST released a short movie titled LISTEN, featuring nonspeaking autistic people with the goal of increasing awareness about their real-life experiences. Short movies like LISTEN are valuable pieces created by disabled people that should be amplified whenever we have the chance to do so.

Advocate and Support Self-Advocacy
Disability advocacy can take many forms. It could be through the support of development and implementation of disability policies. It could be by engaging in education that contributes to the reduction of stigma. It could be by connecting patients and clients with disabilities to disability organizations that provide not only guidance in rights, but a space for culture and community. I once attended a lecture from a young man with a neurodevelopmental disability who only received his correct diagnosis as an adult. He shared how the health professionals that were working with him in the hospital he was receiving rehabilitation services connected him with a local disability organization that he was not familiar with. There, he had a chance of further exploring aspects of his disability identity and developed his roles as a disability rights and disability justice advocate, as a public speaker, and as a community leader – all of which he described as having contributed to his general wellbeing and quality of life. As professionals working with people with disabilities, we should not underestimate the opportunities of connecting our patients and clients with organizations, resources, and initiatives that they may benefit from, and that they bring value to.

References 

Taylor, R. R. (2020). The Intentional Relationship – Occupational Therapy and Use of Self. (Second Edition). F.A. Davis.