Teaching your child to communicate effectively with their peers By Olivia Hacker

Communication is an essential part of our daily lives. Communicating with each other and our surroundings can help us to learn more about the world, express ourselves, and build genuine relationships. However, it’s important to note that every individual communicates in a different way- we can communicate verbally, non-verbally, through writing, or visually, based on our environment, context, or personal ability. As a future Speech-Language Pathologist for children with developmental disabilities, I believe that my role is to help children work through their speech, language, or communication difficulties, while also educating typically developing children on how to properly interact with their peers who may communicate in a non-typical way.  

 

One of the main symptoms of autism spectrum disorder (ASD) is social communication challenges, such as difficulties with spoken language, gestures, eye contact, facial expressions, and tone of voice. Some children with ASD may have limited speaking skills, or talk about certain topics with significant detail and specificity. Some children may have an augmentative and alternative communication (AAC) device. In fact, about one third of individuals with ASD are nonverbal, evidently causing a communication barrier with other children their age (“Autism Facts and Figures,” n.d.).

 

However, I think it is important that we teach our children (from a young age) how to effectively communicate with those who may express themselves differently, in order to promote respect and inclusion for people of all abilities. Rather than labeling kids with disabilities as “weird,” “different,” or “special,” we should be teaching our kids how to avoid ableism, or the discrimination against people with disabilities. 

 

By having an open dialogue, parents can educate their children on disability, and avoid discrimination against those who may communicate differently. With the rise of inclusion-based programs in the school systems, it is inevitable that children will be learning with other children who have developmental disabilities, such as ASD. As children grow up, they may start to ask questions about other children in their classroom who may have different ways of communicating. Here are some tips to teach your children the beauty of INCLUSION and promoting friendship among all children.  

 

  • Explain to your child that ‘communication’ does not just refer to verbally speaking. Communication comes in many different forms, such as pointing to pictures, using a talker device, etc.

  • Everyone has different likes and dislikes (food, hobbies, etc.), but many times we can have things in common, as well. Encourage your kids to look for those commonalities among classmates!

  • Be empathetic – everyone processes their sensory input differently.

  • Respect their personal ‘bubble’ - Not everyone likes to be touched, so give them the space they need to feel comfortable.

  • Be patient - When communicating, give them extra time to think about their response, rather than giving them more verbal input than necessary.

  • Consider teaching your children the basics of sign language, as this could be helpful in various points throughout their lives.

  • When communicating, use eye contact, simple phrases, and a loud, direct voice.

  • Include everyone!!!

 

 

Here is a great video from the TODAY show featuring some of the cast members of Sesame Street, including Elmo and his friend Julia (who has autism). This is a great video to watch in order to help teach your kids how to be a good friend to someone who has autism. 

https://www.youtube.com/watch?v=sNms-nmhCEI

 

References:

 

Autism Facts and Figures. (n.d.). Retrieved September 19, 2019, from Autism Speaks website: https://www.autismspeaks.org/autism-facts-and-figures

Social communication in autism, explained. (2018, April 19). Retrieved September 20, 2019, from Spectrum | Autism Research News website: https://www.spectrumnews.org/news/social-communication-autism-explained/

What To Know About Being A Good Friend To Someone With Autism, According To Sesame Street | TODAY - YouTube. (n.d.). Retrieved September 20, 2019, from https://www.youtube.com/watch?v=sNms-nmhCEI

 

Cultural Competency Caution and Care for Clinicians and the Community

Picture credit: Photo by Sharon McCutcheon on Unsplash 

[The picture above depicts someone’s open left hand with fingers together with a plain blue background. Upon their hand is a variety of colors swirled together in a seemingly random pattern]

As behavior analysts, our code of ethics demands a certain level of competency when ethically changing the behaviors of others.  With the footholds of globalization creeping onward, and a nation’s populace that is growing increasingly diverse (Fong & Tanaka, 2013), being culturally aware of the clients and their families in which this caring profession serves is paramount.

Translation? People have different abilities, repertoires, practices, and values that affect the way they behavior with themselves as well as others in their communities. In order to be effective in this world where borders are disappearing and travel is becoming exponentially less expensive, being culturally competent is, perhaps now more than ever, something that is necessary.

For the purposes of this article, culture will be defined as a group’s shared beliefs, values, and behaviors which are supported [through rewards and punishments to exert control] by others within their communities, broadly defined (Fong & Tanaka, 2013; Skinner, 1971). This can include ethnic groups, ability groups, groups that share values (religious, educational, etc.) which is a very broad definition. So much so, it might be ineffective to really target “cultural competency” on a whole. Which culture do we target? Are their overarching values across all cultures? People can, to complicate the analysis further, be at the intersection of two or more cultures (e.g. disability and ethnicity).

In my experience, awareness is not enough – there needs to be an awareness and analysis of not only those we serve, but of our own behaviors and perceptions as well. Clinicians’ learning histories and experience may affect the way they interact with others and ultimately, impact the quality of care for those they serve. Beyond clinical outcomes, these factors may also impact to the degree to which patient-focused care is implemented. As a result, I have compiled a few tools that may be helpful as a starting point for future clinical and research use. Each table below includes a hyperlink to a completed document that can be viewed on Google Drive.

·         Table 1 includes a direct translation from Fong and Tanaka (2013) about how behavior analysts can include more culturally competent behaviors and values when working with others who may differ from them in a variety of ways. Future research could directly test the utility of each of these as it applies to clinical outcomes, therapist comfort in application, as well as how the people receiving services reacted – were their values included in on planning? Were the goals meaningful for them after they were reached?

·         Table 2 depicts a variety of disability microaggressions that Keller & Galgay (2010) compiled that not only defines, but gives vocal-verbal examples of what these look like. Future clinical research could look at the frequency of how often these microaggressions are emitted then can be directly taught to clinicians regarding avoiding these or ways that do not promote a microaggression component.

·         The Developmental Model of Intercultural Sensitivity (DMIS) is a tool that helps others to conceptualize where one might be between ethnocentrism (and inflexible towards other cultures) and ethnorelativism (flexible and integrating other cultures within self). Table 3, thus, was my attempt to applying this model to more concise behavioral commentaries in order to create actionable steps for applying in a clinical setting.

Perhaps the above resources only add to the concepts of saying, “look! Things are different! Respect that!” My hope are that others can use these resources and start applying it in their own clinical and community contexts. Actions speak louder than words, but if we do not have the right words to define what actions need to take place, we are lost in the static and nothing changes.

Be the change. Collaborate with others (including those you serve). Be aware of your own actions as it relates to working with others.  

By Rocco Catrone

References

Fong, E., & Tanaka, S. (2013). Multicultural alliance of behavior analysis standards for cultural    competence in behavior analysis. International Journal Of Behavioral Consultation And             Therapy, 8(2), 20-22.

 

Keller, R. M. & Galgay, C. E. (2010). Microaggressive experiences of people with disabilities. In D. W. Sue (Ed.), Microaggressions and marginality: Manifestation, dynamic, and impact        (pp. 241-267), Hoboken, NJ: John Wiley & Sons, Inc.

 

Skinner, B. F. (1971). Beyond freedom and dignity. Acton, MA: Coupley Publishing Group.                      Originally published in 1957 by the Meredith Corporation.

Inspiration Porn….What the heck?

This image is of a little boy running in what appears to be a race by the race bib on his shirt. The boy is smiling. He has 2 prosthetic legs. The text across the pic says “Your excuse is invalid”

This image is of a little boy running in what appears to be a race by the race bib on his shirt. The boy is smiling. He has 2 prosthetic legs. The text across the pic says “Your excuse is invalid”

When I first heard this term, I was confused. I didn’t really understand it and thought it was odd. Basically, inspiration porn is using people with disabilities as an example of inspiration or motivation for able bodied people. We’ve probably seen these pics on Facebook or even shared them as well. I am definitely guilty of sharing these photos and videos in the past.

 

Some examples of inspiration porn are when people post that they asked someone with Down’s Syndrome to prom, or highlighting the fact that the America’s Got Talent winner was someone who had autism, or like the picture above of a person with a different ability doing something ordinary and we call them ‘inspirational’.

 

But why? Why do we think these people are inspirational? Why do we feel the need to share these? Why is this actually harmful?

 

I recognize that I am an able-bodied person writing this post and my views in this space are limited. I highly recommend you watch the Ted Talk featuring Stella Young called “I’m not your inspiration, thank you very much.” I also recommend you actually get out and talk to people who identify as having a disability and start that conversation.

 

I reached out to one of my friends who uses a wheelchair as her primary means of mobility to get her opinion. I asked her what she would like people to know about why sharing this content is harmful. She shared with me her opinion that people only think these things are inspirational because the people featured are people with disabilities. If it weren’t for that, people wouldn’t think twice.

 

She also commented that it’s really not inspirational or a good deed to invite someone who has a disability to a party or prom. Why would you be nice to someone just because they have a disability? That’s actually pretty hurtful.

 

So really think next time you feel that urge to share that pic or video… Are you objectifying people with disabilities?

Logan Kovacs

AAIDD: Translating Knowledge to Power and Practice

The American Association on Intellectual and Developmental Disabilities 143rd Annual Meeting was held in late June in St. Paul, MN. There was a significant Illinois LEND presence at the meeting, with multiple LEND alums presenting at the conference. Notably, IL LEND faculty member Meghan Burke received the AAIDD Early Career Award.

The conference theme was Knowledge Translation: Power in Research, Policy, and Practice. Knowledge translation is the act, intention, and processes by which information moves from academia to communities, from researchers to citizens, leaders, and professionals. LEND is a form of interdisciplinary knowledge translation, where research and clinical trainees work in collaboration to inform one another’s practice.

In the context of disability research and policy, knowledge translation becomes an essential access tool. For our work to be meaningful, it should be accessible and actionable to the disability community. How can your work be translated to disability communities?

Research

1. Explore and answer questions that the disability community is asking.

2. Ensure your research design, especially the informed consent process, is accessible for participants with varied communication skills, technology and language access, and levels of understanding.

3. Create opportunities for disabled collaborators as both participants and members/consultants of the research team.

4. Create and distribute open access, plain language summaries of your findings. Meet with community leaders to discuss ways that research can inform change.

Clinical Practice

1. Keep up with current research, especially research that meaningfully incorporates disabled people’s perspectives.

2. Work carefully with patients and clients to ensure that they understand and consent to exams, evaluations, and treatment plans.

3. Challenge ableist ideas and assumptions within your school, clinic, practice, or firm.

Policy/Advocacy

1. Uplift the voices of disabled self-advocates and their policy priorities.

2. Volunteer to ensure that polling places, town halls, and other forums for civic engagement are accessible.

3. Write letters or call or email or visit your representatives. Support disabled people in writing, calling, and visiting as well.

Above all, allow disabled individuals and communities to inform your work, center their perspectives, and continue to fight for a more equitable and accessible world. Knowledge is power.

 By Helen Rottier

 

HelenAAIDD.jpg

What is public health? And how does it relate to children with disabilities?

A common question I have received since deciding to pursue a career in public health is “What is public health?” and “How does your interest in children with disabilities relate to the public health profession?”. Both questions are equally valid and worth exploring as the general population is often unaware the role a public health professional plays in their everyday lives. I think many people still have an image of the community public health worker travelling to neighborhoods to administer vaccines, checking on the sanitation of a local restaurant, and even linking families to resources in their communities to ensure food security. While these roles are still important in ensuring the wellbeing of communities, the role of a public health professional has expanded considerably.

Public health seeks to prevent poor health outcomes, such as chronic disease, infectious disease, and injury/violence through largescale efforts that effect change at a population or community level. This is in contrast to say, what a physician might do, which is treat an individual after they have acquired a poor health outcome (ex. treating someone for diabetes).  Working at a population level and on the prevention-side allows public health professionals to prospectively address health concerns. In order to do so, public health professionals may take a systems level approach where changes have far-reaching effects (meaning, effects an entire community versus an individual) and improve long-term health outcomes; essentially, allowing you to get the most “bang for your buck”.

For example, in terms of public health work and children with disabilities lets imagine this scenario:

Children with disabilities often experience bullying at a higher prevalence than their peers. This leads to a greater rate of poor mental health outcomes. A psychologist/social worker might approach this problem by providing the best treatment approach, such as cognitive behavioral therapy for a child with disabilities who experiences bullying. A public health professional would approach this problem by first conducting research to understand the etiology of the bullying problem. Then, perhaps, they would work to develop a campaign that increases awareness in the community about bullying. Further, they would elicit change via the policy route or through systemic changes by altering protocol to ensure that educators and health care providers routinely screen for bullying. All with the intention to prevent bullying and the associated poor mental health outcomes.

However, for clarification, disability does not inherently equal poor health. Disability is not synonymous with unhealthy because an impairment does not necessarily diminish physical/mental health. Disability is largely a result of inaccessible environments and is a socially constructed phenomenon. People with disabilities do not need to be “fixed”, rather the barriers (inaccessible buildings, communication challenges, etc.) they encounter need to be addressed. These barriers can cause those with disabilities to experience health disparities, which put them at greater risk for poor health outcomes.

Formally, public health has 3 core functions: assessment, assurance, and policy development. Further, there are 10 essential services, which you can read about by following this link: https://www.cdc.gov/publichealthgateway/publichealthservices/essentialhealthservices.html

I encourage you to explore the following resources to expand your understanding of what public health is, and how public health and disability are intertwined.

http://www.phi.org/focus-areas/?program=center-on-disability

https://www.who.int/news-room/fact-sheets/detail/disability-and-health

https://disabilityinpublichealth.org/

https://nationalcenterdph.org/

 

Victoria Eickelberg

 

 

Inclusion should be a right, not a privilege: Transcending Language Barriers in the Disability Community

Retrieved from Alamy Stock Phtos; Contributed by: Anastasia Ramaneka; No property rights

Retrieved from Alamy Stock Phtos; Contributed by: Anastasia Ramaneka; No property rights

I have worked in a wide variety of settings and context throughout Chicagoland over the course of my last 4 years of training in a doctoral program in clinical psychology. I have worked in private practices in the upper-middle class communities in the Northwest suburbs, as well as community settings and hospitals in some of the underserved and marginalized neighborhoods on the southside of Chicago.

Whether this be Mandarin, Polish, Farsi, Arabic, French or any other language for that matter, there are not enough accessible resources for families whose predominant language is not English. Navigating “the system” is hard enough for English speakers, but if you add the language component to the mix, it becomes all the more difficult to access care. With the ever-mounting barriers, many families and their children end up not receiving access to resources simply because there are not enough translation services or multilingual providers available. This often results in exacerbated developmental delays that very well could have been addressed, had the services been available in the desired language of care. 

As a bilingual psychologist in training, I have specifically noticed the ever-growing demand and need for services for the Latin-x, Spanish-speaking community. In all of the settings I have trained in, the wait-list for the Spanish speaking patients is always nearly TWICE that of those who are English speaking. Further, many Spanish speaking Latin-X families get dragged back and forth between different settings without ever actually receiving the care and services they are seeking because of miscommunication with providers.

For this reason, I was extremely encouraged to hear about the work that Grupo Salto is doing here in Chicago. I was first exposed to this group through my experience as a LEND trainee. This group “… was founded by Latino parents of children with autism spectrum disorders (ASDs) and Hispanic program staff from the UIC Developmental Disabilities Family Clinics (DDFC) in 2003.” “Grupo SALTO aims to provide support for Latino families that have children with ASD by providing culturally and linguistically appropriate training, education, and services (LEND Brief, 2015).

Retrieved from Shutter stock Photos;; No property rights

Retrieved from Shutter stock Photos;; No property rights

I had the opportunity to attend a Grupo SALTO screening event and conduct Autism Spectrum Disorder (ASD) screenings one morning. Through this experience, I got to speak with some of the parents who are involved in this group. It was absolutely amazing to hear about their individual experiences with Grupo SALTO, as well as their passion for advocacy and empowerment of other Latin-x parents who had children with ASD. This group is providing an amazing and greatly needed space and sense of community to a community that is often overlooked and marginalized by the larger systems.

By Vanessa Aguilera

The Latinx perspective on autism By Natalia Baires

From 2014 to 2060, it is estimated that individuals of Hispanic or Latino/a origin will increase to about 115% (Colby & Ortman, 2015). Given the growing presence of this population in the United States, there are various implications for clinicians and professionals serving Latino/a individuals who have autism and related developmental disabilities.

It is estimated that the current prevalence of autism among children is 1 in 59 (Baio et al., 2018). For children who come from diverse racial and ethnic backgrounds, obtaining a diagnosis of autism may present its own unique challenges, such as low socioeconomic status, decreased access to health insurance, and having English as a second language. As a Spanish-speaking clinician who worked with Latino/a families who had children with autism, most, if not all, of my clients were of low socioeconomic status and had caregivers who were monolingual Spanish speakers. Working with these families led me to see firsthand the unique challenges that perhaps other ethnic and racial groups do not face as often, such as high turnover rate with behavior therapists due to the neighborhood the client lived in or having to directly communicate with me as the supervisor who was in the home once a week instead of with the therapist who was there multiple days a week due to language barriers.

Particularly for the Latino/a community, knowledge and perceptions of autism, parent and family factors, and health care system factors are three barriers identified regarding Latino/a children not receiving a diagnosis of autism (Zuckerman et al. 2014). Caregivers of Latino/a children with autism often express that there is limited knowledge and developmental resources pertaining to autism in the Latino/a community, which prevents early diagnosis and services to take place (Zuckerman et al., 2014). Even when developmental resources are available, they lack in quality, are poorly translated into Spanish, or use medical jargon, which is problematic for caregivers of lower reading levels. Moreover, knowledge of autism is perhaps even less in Latin American countries, where autism “does not exist” and there is a stigma regarding mental health and disabilities.

As clinicians and professionals who work with diverse populations, we should be more culturally competent and thoroughly take cultural and linguistic factors into consideration when planning for assessment and treatment. Fostering cultural competence can lead to great outcomes for clients of diverse ethnic and cultural backgrounds receiving services because it can strengthen the quality of services. Some considerations that clinicians and professionals are advised to take into account include having a culturally relevant, respectful, and collaborative approach to delivering treatment instead of imposing values and interventions that do not align with Latino/a values (e.g., family and respect; Parra Cardona et al., 2009). For instance, although I identify as Latina, I was born in the United States, which is not the case for the caregivers of the clients I was serving. Although we share the Latino/a culture, I also grew up with American values, which can differ from Latino/a values. I remember oftentimes where I would advocate for strengthening the client’s independence with self-help skills, such as showering, and observing that caregivers were not completely following procedures that they had agreed to. It was not until I did some self-reflection that I realized I was imposing some of my personal American values on the families I was working with. Even though I recognized that mother figures value taking care of things for others in the family in the Latino/a culture, I was not being respectful or mindful of that aspect and instead imposing what I thought was “correct” as a second-generation Latina working with Latino/a families who immigrated to the U.S.

Another way for clinicians to be more mindful of cultural and linguistic factors includes being aware of when racial microaggressions are emitted, which are verbal or non-verbal behaviors, whether intentional or unintentional, that communicate hostile, derogatory, or negative racial slights and insults toward people of color. Examples of this include assuming a Spanish-speaking family is from Mexico when in actuality they are from a country in South America or assuming a Latino/a individual automatically speaks Spanish. Instead of assuming things about a culture, we should simply ask the families we serve. And instead of approach services as an “it’s my way or the highway approach,” clinicians should instead collaborate with the families they serve to further promote the well-being of the client.

References

Baio, J. Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., … Dowling, N. F. (2018). Prevalence of Autism Spectrum Disorder among children aged 8 years - Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2014. Morbidity and Mortality Weekly Report Surveillance Summary 2018, 67, 1-23. doi: 10.15585/mmwr.ss6706a1

Colby, S. L. & Ortman, J. M. (2015). Projections of the Size and Composition of the U.S. Population: 2014 to 2060, Current Population Reports, P25-1143, U.S. Census Bureau, Washington, DC, 2014.

Zuckerman, K. E., Sinche, B., Mejia, A., Cobina, M., Becker, T., & Nicolaidis, C. (2014). Latino parents’ perspectives of barriers to autism diagnosis. Academic Pediatric, 14, 301-308. doi: 10.1016/j.acap.2013.12.004

Behavioral Science in the 22nd Century

Behavior Analysis is a parsimonious science that explains human behavior as a function of its’ environmental context (Catania, 2013; De Houwer, Barnes-Holmes, & Moors, 2013). This science defines behavior in measurable observable ways to allow for objective evaluations of the unique contexts under which behavior occurs. The context in which behavior occurs explains the instrumental nature of the behavior for the individual. That is, the need the behavior fulfills for the individual behaving. Context of behavior can be described as what happens before, and what happens immediately after the behavior. The context describes what is often called a functional relationship between environment events and behavior (Catania, 2013). Trying to understand behavior from the perspective of environmental contexts may avoid internal labels for causes of behavior, as well as possible blaming of the individual or community (Skinner, 1972).

           There are additional factors to be considered when analyzing behavior in Behavior Analysis. These include species-specific structures, and species-specific survival responses to specific environmental contexts. For example, certain behavior has been selected genetically over the course of evolution to ensure the survival of the species. This produces specific structures across different species or ethnic groups. The gag response we all experience when we eat rotten food is an example. This looks the same across multiple people and has been chosen over various generations because it guarantees that we all survive, as rotten food could produce some very difficult medical conditions, which could possibly result in death. Similarly, cultural practices are also considered when analyzing behavior. Cultural practices, like individual behavior and genetic predisposed responses, operate around environmental context (Biglan, 1995). The cultural practices are selected due to the survival value such practices affords the majority of individuals within the culture. For example, our cultural environment in the USA selects practices like long summer vacations for students, because many years ago, these practices guaranteed help to harvest crop which provided food and income (Pederson, 2012). Other cultural practices that have value in today’s society include, presidential elections, baby showers, potlucks, block parties etc. Each of these practices occur in specific situations, and have certain preferable consequences for specific cultures.

          As an applied science, Behavior Analysis allows society to focus on individuals and communities within their unique contexts to allow us to change behavior effectively to improve the quality of life for individuals and communities. Many demonstrations of this useful effect exist in literature and the environments around us every day (Altus & Morris, 2009). The traffic light signals and the email notification sounds are some everyday examples of how the powerful principles of Behavior Analysis help us better our lives today. The contextual approach to understanding behavior provided by Behavior Analysis allows for easy integration into other fields of study such as evolution science (Biglan, 2018). By integrating the contextual approach to analyzing behavior of individuals/groups into fields like evolution science, we may be able to understand situations that make behavior/cultural practices more probable, as well as identify their maintaining consequences. This integration may allow for a more cooperative research and practioner community necessary to address cultural challenges such as racism, lack of disability rights, ableism and other social issues. I do not have data to support this, however I believe analyzing these issues from a cultural level while evaluating the context, may allow us to determine the functional relationships between certain cultural practices and our community’s needs. As a result, we may be able to make changes to the maintaining variables of these practices to change such practices effectively. In addition, we may also be able identify the needs fulfilled by these practices, so we can provide them non-contingently, eliminating the need for such practices to occur in the first place.

         As our society moves into the 22nd century, there is a need to harness the powerful empirical findings from our most effective scientific fields to improve our lives. Our societies are not the same welcoming, beautiful and nurturing communities they use to be. Issues such as lack of disability policy, ableism, health care disparity, racism, and pollution to mention a few, threaten the survival of our society as a whole. As LEND trainees, I encourage you to reach out to fellow trainees to learn about their fields and effective scientific advancements in these fields. How can all these findings be combined into a comprehensive research and practice framework? Let us all rely on empirical evidence to drive effective action for all members of the community as a whole. Replicate practices based on empirical evidence, either through research or observable evidence from practice. Welcome diverse opinions and try to examine behavior within its context, it makes a big difference. Here is an interesting website from Behavior and Social issues https://firstmonday.org/ojs/index.php/bsi.

 References

Altus, D. E., & Morris, E. K. (2009). BF Skinner’s utopian vision: Behind and beyond Walden Two. The Behavior Analyst32(2), 319-335.

Biglan, A. (1995). Changing cultural practices: A contextualist framework for intervention research. Context Press.

Biglan, A. (2018). Evolution and contextual behavioral science: An integrated framework for understanding, predicting, and influencing human behavior. New Harbinger Publications.

Catania, A. C. (2013). Learning (5th ed.). Cornwall-on-Hudson, NY: Sloan Publishing. 

De Houwer, J., Barnes-Holmes, D., & Moors, A. (2013). What is learning? On the nature and merits of a functional definition of learning. Psychonomic Bulletin & Review20(4), 631-642.

Pedersen, J. (2012). The History of School and Summer Vacation. Journal of Inquiry and Action in Education5(1), 54-62.

Skinner, B. F. (1972). Beyond freedom and dignity (No. 04; BF319. 5. O6, S5.). New York: Bantam Books.

 

 

 Kwadwo Britwum

 

Autism in Women: Critical Awareness and a Call to Action by Hena Thakur

In the United States, 1 in 59 children are diagnosed with autism and prevalence rates are currently higher among males than among females (Baio et al, 2018). At first glance, these statistics may suggest that autism is a predominantly “male” condition. In fact, media outlets, such as the television show Atypical, overwhelmingly portray individuals with autism as male characters. Recent investigations, however, have emphasized that our current screening and diagnostic systems are suboptimal for detecting autism among females.

Relative to males, females must often display more impairing symptoms, as well as a higher severity of behavioral and emotional concerns, to meet criteria for autism (Dworzynski, Ronald, Bolton, & Happe´,2012; Russell, Ford, Steer, & Golding, 2010). Current explanations for this discrepancy include the proposition that diagnostic systems, which have been developed and validated within male only samples, do not adequately capture characteristics of autism that are found among females (e.g., Lai, Lombardo, Auyeung, Chakrabarti, & Baron-Cohen, 2015). For example, females are less likely to demonstrate externalizing behavior, which reduces the likelihood for referrals for evaluation and recognition of repetitive/stereotyped behavior (Van Wjingaarden-Cremers et al., 2014). Receiving a diagnosis earlier rather than later can help improve quality of life, thus adequate screening and assessment procedures for females deserve further attention.

For an emerging clinician-researcher, these discussions have highlighted the importance of thinking critically about the methods and materials we use to screen and diagnose individuals within clinical contexts. It is encouraging to witness these conversations occurring across different platforms, including autism specific blogs, mainstream news outlets, and academic journals. In addition, institutions such as the University of Illinois Autism Clinic (UIAC) and The Autism Program at the University of Illinois (TAP), are teaming up to provide a women’s group for female adolescents with autism. During these sessions, adolescents will have an opportunity to discuss a wide range of topics, including social skills, executive functioning, and sexual education. Although not directly addressing the issue of diagnosis, this initiative acknowledges and celebrates a sub-population of the autism community that has long been overshadowed.

Photo Description: A woman is looking down with her left hand against her forehead. She is surrounded by waves consisting of different shapes, including rectangles, triangles, and swirls.  Photo credit: Rebecca Hendin/ BuzzFeed,  www. buzzfeed.com

Photo Description: A woman is looking down with her left hand against her forehead. She is surrounded by waves consisting of different shapes, including rectangles, triangles, and swirls.

Photo credit: Rebecca Hendin/ BuzzFeed, www.buzzfeed.com

References

Baio, J., Wiggins, L., Christensen, D. L., Maenner, M. J., Daniels, J., Warren, Z., ... & Durkin, M. S. (2018). Prevalence of Autism Spectrum Disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveillance Summaries, 67(6), 1.

Dworzynski, K., Ronald, A., Bolton, P., & Happe´, F. (2012). How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders? Journal of the American Academy of Child and Adolescent Psychiatry, 51(8), 788–797. doi:10.1016/j.jaac.2012.05.018.

Lai, M.-C., Lombardo, M. V., Auyeung, B., Chakrabarti, B., & Baron-Cohen, S. (2015). Sex/gender differences and autism: Setting the scene for future research. Journal of the American Academy of Child and Adolescent Psychiatry, 54(1), 11–24. doi:10.1016/j.jaac.2014.10.003.

Russell, G., Ford, T., Steer, C., & Golding, J. (2010). Identification of children with the same level of impairment as children on the autistic spectrum, and analysis of their service use. Journal of Child Psychology and Psychiatry and Allied Disciplines, 51(6), 643–651. doi:10.1111/j.1469-7610.2010.02233.x.

van Wijngaarden-Cremers, P. J., van Eeten, E., Groen, W. B., van Deurzen, P. A., Oosterling, I. J., & van der Gaag, R. J. (2014). Gender and age differences in the core triad of impairments in autism spectrum disorders: A systematic review and metaanalysis. Journal of Autism and Developmental Disorders, 44(3), 627–635.

Neurodiversity: It’s Okay to Think Differently!!

As a disability studies trainee and proud neurodivergent person, I wanted to share a little about neurodiversity, the movement of acceptance for all ways of thinking, learning, and being.  Neurodiversity recognizes that differences which have historically been pathologized are not inherently harmful or problematic. The neurodiversity movement believes these natural differences in neurotype (how one’s brain functions) should be celebrated, rather than corrected. Though neurodiversity was initially championed by autistic self-advocates, it has grown to include those with intellectual disabilities, ADHD, learning disabilities, mental health conditions, and other disabilities that affect how one thinks and feels in the world. Though the history of the term is unclear, it has been attributed to both Jim Sinclair, an autistic advocate, and Judy Singer, an autistic scientist.

 

There are also misconceptions and criticisms of neurodiversity, even from those within the neurodivergent community. One common misconception is that individuals who believe in neurodiversity reject all medication, therapy, and other interventions to address their condition. While neurodiversity recognizes the value in different ways of thinking and being, individuals are encouraged to make decisions about treatment, including medications, that work for them. Another misconception is the belief that neurodiversity is only for individuals who are labeled “high-functioning” or have low support needs. The community rejects functioning labels because how well one functions is contingent on how well their needs are being met. Neurodiversity recognizes the dignity of individuals who have different support needs, including those who use assistive technology and live interdependently, contributing to and benefiting from life in community. Neurodiversity also challenges expectations of “normal functioning,” which value certain ways of moving, communicating, living, and working over others. Such expectations are especially pervasive in schools and workplaces, creating a substantial barrier to education and employment for neurodivergent people.

 

Disabled people, especially those with developmental, learning, and psychiatric disabilities, experience internalized ableism and shame about who we are. Neurodiversity provides the opportunity to celebrate ourselves and our communities. As clinicians, advocates, and professionals, understanding neurodiversity can help you to understand and respect your patients, students, or clients who think differently.

 

Helen Rottier

Life as a continuous learning experience

As health care professionals it is extremely important that we stay up to date on the current evidence to support the treatment approaches we are using in practice. In addition to that, we also want to make sure we are listening to the needs of the populations we are working with.   

You might be asking, well how can I make sure I stay on top of all the research and evidence? And how do I make sure I hear the voices of the communities I am working with? Well there are many resources out there that can help you!

The first thing I would recommend is making sure you are subscribed to your national organization as they are constantly updating their website and disseminating new research related to your field. For example, my national organization is the American Occupational Therapy Association (AOTA). Typically, organizations have annual conferences that showcase the current evidence supporting new intervention approaches.

Next, I would also recommend you figure out if your state has any organization related to your field. Illinois has the Illinois Occupational Therapy Association (ILOTA). I personally enjoy being involved with this organization because they have local conferences that I can easily attend.

Over the years I have also come across some unique programs that have a variety of online trainings and resources for practitioners. Here are some of the ones I frequently check:

1.      Early Intervention Training Program

o   They have several free online webinars that can be useful for individuals that are working in early intervention or are considering going into this practice setting

2.       Association of University Centers on Disabilities (AUCD)

o   AUCD offers several events and webinars open to the public

In terms of making sure you are listening to the needs of your population, I recommend building a connection with an organization that serves your target audience. For example, my area of interest is pediatrics and families. I have recently started volunteering at two community organizations that work with families of children with disabilities. With just a few sessions of interactions I have been able to identify areas of need that they have and ways in which I can assist them. One organization I want to highlight is:

1.      Grupo Salto

o   Grupo Salto was started back in 2005 with the intention of providing supports to Spanish-speaking families from Chicago who have a child with autism. The goal of Grupo Salto is to empower families and be advocates for change. The group meets monthly to provide educational seminars and social activities.

o   They have their 1st Disabilities Conference in Spanish coming up on April 6th, 2019. There are many ways in which you can get involved to make this a successful event! Contact them via gruposalto@gruposalto.org

Remember, although you may have completed, or are in the process of completing your educational requirements to be a health provider, there is an abundance of knowledge that we can still learn from on an everyday basis! I encourage you to read a new article, a new blog, or listen to a webinar at least once a week!

Jazmin Landa

The Government Shutdown: A Debacle for All, Especially Individuals with Disabilities

According to the Washington Post, approximately 800,000 federal government employees have been impacted financially by the partial government shutdown resulting from the Congress' inability to agree upon a budget. While Congress debates over one controversial issue - the inclusion of funding for a border wall, the effects of the shutdown creates more issues and ceases the services and supports that already have bipartisan and taxpayer support.

Members of the Disability Justice Initiative and Center for American Progress describe five ways the government shutdown is impacting individuals. One is obvious, during the shutdown many government workers do not get paid, but in some "essential" cases must still work. What may not be obvious is that finding part-time or alternative work in the mean time for individuals with disabilities can often be challenging. This is especially true for contracted workers or individuals who are working for the government as part of community-partnerships specific to individuals with disabilities. Second, a lapse in USDA funding has left individuals dependent on SNAP, WIC, free/reduced school lunch, and CAFCP funding with uncertainty in regards to how long they will have benefits. According to the Food Research & Action Center, "food insecurity disproportionately affects people with disabilities. In 2009-2010, households with adults living with disabilities experienced a food insecurity rate of 33 percent — almost three times the rate at which households with no adults with disabilities were food insecure (12 percent)." The organization states that one in five households receiving SNAP benefits includes an individual with disabilities. Another impact of the shutdown relates to housing. According to the Center for American Progress, the U.S. Department of Housing and Urban Development (HUD) is shutdown with a lapse in funding, putting at-risk the rental assistance programs that provide supportive and safe housing for more than 5 million low-income households. According to HUD, approximately 20 percent of individuals that receive HUD rental assistance have a disability. Lastly, it is important to remember that many state and local programs rely upon federal funding. If the government shutdown results in a lapse in funding for these programs, transportation, healthcare, Head Start programming, public transportation, and more could be impacted. Individuals with disabilities often utilize such programs. In fact, according to the National Council on Disability, 6 million Americans with disabilities have difficulties obtaining the transportation they need and utilize public transportation services.

As we move forward, it is essential we continue to communicate to our legislature the impact that the government shutdown is having on all of us, including individuals with disabilities. While the "major" issue that has initiated this shutdown is controversial, the services and supports that have ceased or are at-risk of ceasing are common sense and withholding them is cruel.

 

Michelle M. Sands

University of Illinois at Urbana-Champaign

Doctoral Student - Department of Special Education

msands4@illinois.edu

 

How to Talk to Someone Who "Can't Talk"

Whether it is at work, school, or out in the community, it is almost a guarantee that at some point in their life, everyone will meet someone without the ability to verbally communicate. This characteristic can occur in all sorts of populations for all sorts of reasons. These populations can include individuals with autism spectrum disorder, individuals with cerebral palsy, stroke survivors, traumatic brain injury survivors, individuals with neurodegenerative disorders, and many more. Because of this variety and likelihood of a rendezvous, it is very important for everyone to know how to handle this type of interaction appropriately and pleasantly.

A common misconception is that if someone can’t talk, there is no way to communicate with them. That’s incorrect! Just because physical speech isn’t present in an individual, that doesn’t mean they don’t have the ability to hear and understand you, as well as form their own thoughts, opinions, ideas, and judgments of your character. Watch yourself!

In order to avoid offending someone, here are some tips to consider when communicating with individuals who are unable to verbally communicate:

●       Always assume competence! It is very frustrating to have communication difficulties, and even more frustrating when others don’t think you are capable of something.

●       Use vocabulary, intonation, and topics that reflect the individual’s age, not their physical size or appearance. Some neurodevelopmental disabilities such as Rett syndrome or Down syndrome may cause a smaller stature, so a 10-year-old girl may physically appear to be 4 years old or younger. She’s still a 10-year-old with 10-year-old interests, so if you talk to her in your preschooler voice, she’ll most likely be unhappy. If you’ve just met someone and are unsure of their age, just do your best!

●       Pay attention to body language, particularly facial expressions. Although someone may be unable to tell you out loud that you’re scary and that they want space, a sharp glare can say a lot. Respect that!

●       Don’t use physical touch too much unless you know it is something that this individual enjoys. How would you feel if you were 15 years old and someone came up to you and kept touching your hair? Yikes.

●       Don’t talk about the person directly in front of them. This generally isn’t a thing you should do to anyone, ever, so definitely don’t do it to someone just because they can’t verbalize their annoyance. If you have questions or comments, direct your conversation toward the person! Inclusion is key.

Although these tips just scratch the surface, hopefully they will be helpful in the future. If you’re looking for more, here is a great source for communicating with individuals without the ability to speak within the clinical setting: https://bronwynhemsley.wordpress.com/about/25-tips-for-communicating-with-people-with-little-or-no-speech-in-clinical-settings/ 

Anna Hastings