A Discussion About Disability Services and The Importance of The Care Map

By Ashleigh Nightengale, L.S.W.
Illinois LEND Program Cohort 2024 – 2025

As a person with cerebral palsy who uses disability services, I see a lack of continuity between the services provided at one stage of life and the next, specifically in the educational and healthcare field. In education, the I.E.P. "Individualized Education Plan," directs educational support through high school with input from teachers, parents, and students; however, there is no equivalent mandate disability support in college education settings. This makes obtaining a degree (which opens doors for employment and financial mobility) even more challenging. In healthcare, the medical model of disability, a heavily biased viewpoint of people with disabilities as something to be fixed, plays a big part in the goal setting process with therapists. For example, The therapist may come in with a preconceived notion of the individual's capabilities and range of improvement. 

How do ensure that people with disabilities are working towards the goals that are meaningful to them? How do we improve continuity between supports across sectors? How do we facilitate individuals becoming successful, self-sufficient adults with disabilities? 

My answer to this question is utilizing the CareMap, a diagram of people and services the individual with a disability uses to manage their care, as their care is complex and requires different services. The key here is to ensure that these different services are in constant communication to facilitate the completion of the individual and care team/family's expressed goals. The CareMap keeps the person with a disability in the driver's seat, allowing them to exercise autonomy and independence regardless of their impairment.

By introducing the CareMap as early as possible, for example in early childhood, we set the foundation for working with all aspects of the individual's needs. The family should try to understand what they want their child to achieve at this early stage. As the individual grows, they can communicate the goals that they want to achieve with the support of their family/care team. The CareMap may change, so new service connections may be added as needed. Utilizing the CareMap, we can more easily establish achievable goals that can be built upon to improve the individuals' knowledge and skills to progress even further than what is expected of them because of their disability. The CareMap should address all aspects of life for a person with a disability. The Care Map "allows a person to visualize and easily understand the connections between the people caring for someone. Having individuals look at their goals in this way allows them to utilize different aspects of their support system to the best of their ability to accomplish their goals. 

In my life, systematic barriers and provider bias have played significant roles in decision-making in both education and healthcare without my input. If it had not been for my family's support, I would have fallen through the cracks. I was not informed about the importance of the care team or care mapping; all I had was my family and word-of-mouth from other people with disabilities that I knew. My healthcare and educational journey was filled with trial and error. Despite this, I am a licensed social worker for the state of Illinois and a recipient of 2 master's degrees, one in social work and the other in grant writing. In addition to this, I can do everyday things with support. When I was first diagnosed with cerebral palsy at a year old, my mother thought I would not be able to write my name, let alone gain a professional license and go to the doctor on my own. I accomplished so much because of my determination and my family's support.

Nevertheless, being introduced and utilizing the CareMap throughout my journey would have helped me avoid some of my challenges. Using the CareMap, I could have utilized the resources to request better academic support in college, which would have helped me be more successful and finish on time. In addition to this, it would have allowed me the knowledge to investigate schools and find an even better school for my 2nd Master's degree that could support my needs. Moreover, using the CareMap would have given me more forethought to ask more questions of my therapist (as I would have insight from other providers) to inquire about new techniques to make me physically stronger and more independent. 

The CareMap is the tip of the iceberg when fighting for services to ensure top-quality disability services that can enhance the individual's quality of life. It is up to the individual and care team/family to constantly seek new information, partners, and allies to increase their knowledge of different care and services that could help them in specific areas of their lives. It is up to clinicians, care team/family members, and advocates like me to address the healthcare issues concerning people with disabilities from a biopsychosocial approach and, at the same time, fight for equity and inclusion within society. 

References

Pallium Canada Compassionate Communities. (2021). How to Create a CareMap. https://www.pallium.ca/wp-content/uploads/2021/06/Care-Map-Toolkit_How-to-Create-a-Care-Map.pdf

University of California, San Francisco. (2018). Medical and Social Models of Disability. Office of Developmental Primary Care. Retrieved September 6, 2024, from https://odpc.ucsf.edu/clinical/patient-centered-care/medical-and-social-models-of-disability#:~:text=The%20Medical%20Model%20views%20disability%20as%20a%20defect

U.S. Department Of Education. (2020). I.E.P. guide to IDEA 97. https://www2.ed.gov/parents/needs/speced/iepguide/iepguide.pdf

Behavior as Communication: Understanding Behavior to Better Support Children with Developmental Disabilities

By Ashley Murphy, MS, MA
LEND Trainee, Psychology

Every child has moments where they struggle to regulate themselves. In fact, we all struggle to regulate ourselves from time-to-time, regardless of our age. While all caregivers and children deserve support with managing behavior and emotions, children with developmental disabilities and their caregivers require special attention. 

Children with developmental disabilities have high rates of disruptive or harmful behavior, such as aggression or self-injury. In addition, caregivers of children with disabilities report challenging behavior as one of their top stressors, often influencing their higher-than-average levels of stress and impacting their overall wellbeing. Researchers have identified a variety of factors that influence the presence of challenging behaviors, including a child experiencing communication difficulties, having difficulty responding to sensory inputs, and managing health issues that make them feel unwell (who doesn’t want to have a tantrum when sick?). However, one key principle can explain the reasoning for all these causes as well as others:

Behavior is communication.

Our society relies heavily on verbal language to communicate our internal state to others. However, despite common assumptions, communicating our needs and wants requires a complex set of different skills. Thus, behaviors serve to communicate those needs when other methods do not work effectively for an individual. Psychologists believe that behavior has four functions:

Avoidance: Behaviors help us avoid undesirable activities. For example, when someone comes up with an excuse to avoid a dreaded event, they engage in a “socially acceptable” behavior to avoid attending the event. When a child runs out of the classroom or has a tantrum when asked to complete a math worksheet, they engage in a “less desirable” form of avoidance. 

Attention: Human beings are social creatures who need attention. Thus, kids will find a way to get that need met, even if it means getting “negative attention” (scolding, lecturing, getting called out in class, etc). When a child makes silly or disruptive comments during class to get a laugh from their peers, we consider their behavior attention seeking. 

Getting Something: If you have a sibling, you likely have experienced them taking your things (looking at you and my calculator, Little Bro!). Thus, you also have likely had the experience of getting into an argument or a fight with your sibling to get your belonging back. The same things happen when children want something but have difficulties asking for it. For example, a kindergartener might push a classmate who has the class dump truck so they can play with it. 

Sensory Regulation: We all have sensory preferences. Some of us love the feeling of a new, tight t-shirt, while others of us feel suffocated and prefer a baggy sweatshirt. Also, think about being “hangry”- when we get very hungry, many of us (myself included) have difficulties regulating ourselves. Sensory processing differences, which commonly co-occur with developmental disabilities, often exacerbates these sensory preferences and result in the desire to regulate exposure to that sensory experience. For example, a child might find loud noises extremely distressing and painful. Thus, they might hit a screaming classmate to make them stop, or they might run to their bedroom when the vacuum turns on. 

Our society loves to label things as good or bad and then ascribe values to those labels. These labels run rampant in parenting circles, with common examples including “your child acts so badly” or “wow, she’s such a good kid.” However, I would like to argue that we all need to stop thinking about behaviors as “good or bad.” Instead, we need to shift our thinking to “what do you need” and “how can I help you safely get that need met?” Yes, children with disabilities often require more intensive supports around these communication needs. However, I would argue that we would benefit from this shift in mindset for all people, regardless of ability. So next time you see another person engaging in “a challenging behavior,” I encourage you to take a second and try out this new way of thinking before you respond – you might find it helps you better understand others (and perhaps even yourself). 

References

Gallagher, S., Whitele, J. (2012). The association between stress and physical health in parents caring for children with intellectual disabilities is moderated by children’s challenging behaviours. Journal of Health Psychology, 18(9), 1220-1231. https://doi.org/10.1177/1359105312464672 

Simó-Pinatella, D., Mumbardó-Adam, C., Montenegro-Montenegro, E. et al. (2017).  Prevalence and risk markers of challenging behavior among children with disabilities. Advances in Neurodevelopmental Disorders 1, 158–167 (2017). https://doi.org/10.1007/s41252-017-0022-8

Simó-Pinatella, D., Mumbardó-Adam, C., Alomar-Kurz, E. et al. (2019). Prevalence of challenging behaviors exhibited by children with disabilities: Mapping the literature. Journal of Behavior and Education, 28, 323–343. https://doi.org/10.1007/s10864-019-09326-9 

In the Shadow of Willowbrook: A Vision of Community-Centered Care

By Christian Meyer, MSW, LSW

The Willowbrook State School in New York was an infamous institution that locked away nearly 6,000 children, teens, and adults with intellectual and developmental disabilities (IDD) from 1948 to 1987. During its time, it was the largest facility of its kind and boasted an enormous publicly funded budget, although conditions in Willlowbrook were sordid, crowded, and inhuman. In his 2021 book Public Hostage, Public Ransom, William Bronston, a doctor who worked there and a tireless advocate to improve conditions, described the institution as being a warehouse and a site where those admitted would go to die with no plan of exit to community placement. The conditions of Willowbrook, revealed to the public in 1972 via an expose by reporter Geraldo Rivera, were not an outlier of publicly-funded services for people with disabilities, but a vivid microcosm of a pervasive public logic surrounding the value and worth of folks with disabilities. That is the belief that those with disabilities, whether it be those with mental illness, developmental disabilities, or physical disabilities, should be hidden from the public eye by incarceration in a range of facilities: residential schools, psychiatric hospitals, and institutions, to name a few. Advocacy pushing against this logic helped to shift the course of supports and services for the community as well as reduce longstanding stigma.

With this history in view, the good news is that today most individuals with IDD and folks across the disability spectrum live in the community independently, with family, or in small agency-operated group homes. However, a smaller percentage, around 10% by some estimates, continue to live in nursing homes or state-operated facilities, like Willowbrook. This segment of the population seems to have been left behind by the home-and-community-based services (HCBS) system, which includes having access to in-home personal support, community day programs, small group home placement, and specialized medical care. In my opinion as an advocate and a professional, this group has not been able to access HCBS due to their complex needs that the system has not prioritized in policy or funding outside of an institutional setting. These “complex needs” include those with an IDD and mental illness, IDD and special healthcare needs, and individuals with IDD who are also aging. The legacy of Willowbrook, then, continues into our current day as evidenced by continuing to incarcerate those with the most complex needs in facilities that have demonstrated time after time that they do not work, are breeding grounds for abuse, and dehumanize those that live there. Illinois currently has 7 such institutions, called State-Operated Developmental Centers (SODCs), each of which have been open for 50 plus years. This represents a pervasive stigma that still bleeds into the way that care and services are provided today. The belief underlying this stigma posits that institutions are the only model by which people with complex needs can get their medical, safety, and daily-living needs met. 

Although there is some truth to this belief, considering that there are few community-based services available to those who have complex needs (i.e. can manage medical complexity in a group home or family home environment), it is vital that new models be developed that will put institutions out of business for good. Dr. Liat Ben-Moshe describes this idea in her book Decarcerating Disability in the following quote: “Earlier attempts to achieve change…through exposes or litigation, for example….were not successful because they did not develop an alternative logic to institutions (p. 69).” I believe that Illinois, and every state for that matter, should work towards serving those with the most complex needs in the community by replacing the very idea of segregationist and prison-like settings as a care option. There are several movements that have been piloted in other fields (aging) as well as in the mental illness and IDD spaces that I envision could help to shift the narrative further to eradicate the needs for institutions that exist in the shadow of Willowbrook’s legacy. If models from other fields could be considered and adapted to serve those who also have IDD, then I believe that the demand for institutional care will diminish over time. Please see links to a few of these innovative models below:

• The Greenhouse Model: A care model oriented towards older adults in need of skilled nursing (with significant medical needs) or memory care. It offers 24/7 365 days a year skilled nursing to individuals in small cottages in the community and equipped with necessary medical equipment. Those that live there also have opportunities to engage in social life with others in the community and guide the rules/expectations of the community. https://thegreenhouseproject.org/

• Clubhouse Model: A community care model for those with serious mental illness (SMI) that involves community-centers operated by and for individuals with lived experience. https://clubhouse-intl.org/what-we-do/what-clubhouses-do/ https://fountainhouse.org/about/clubhouse-model 

• START Model: Stands for Systemic, Therapeutic, Assessment, Resources, and Treatment. This crisis prevention and intervention model designed to support those with dual diagnosis of IDD and mental illness in their current placements to avoid hospitalization or institutionalization. https://iod.unh.edu/national-center-start-services 

References

https://risp.umn.edu/products/key-questions/where-do-people-live

https://www.nyc.gov/site/mopd/events/our-history.page?slide=10

https://www.liatbenmoshe.com/

https://www.disabilityrightstn.org/willowbrook-51-years-later-a-look-at-history-and-modern-advocacy/ 

https://www.dhs.state.il.us/page.aspx?item=31359 

ADHD – Women have it, too!

By: Noelle Lindsay

Throughout history, ADHD has been predominantly considered a male condition. This is not due to a lack of women with ADHD; this is due to a lack of diagnoses. So many young girls fall through the cracks and go undiagnosed because they often don’t present with the same “typical” symptoms as boys do. That is because there are different forms of ADHD. Men predominantly have what is called the hyperactive-impulsive type, and women more commonly have the inattentive type. A mix of the two types, referred to as the combined type, is also common. The hyperactive-impulsive type presents symptoms such as difficulty sitting still, speaking out of turn, and impatience. This type of ADHD, as stated above, is most common in boys and is more quickly diagnosed because of the externality of the symptoms. The inattentive type presents symptoms. The inattentive type is more common in girls, and since its symptoms are internalized, they are often hard to notice. This means that they may not cause disruptions in class or have a seemingly endless amount of energy, which is the stereotypical presentation of ADHD and what parents and teachers likely think to look for.

I know firsthand what it feels like to fall through the cracks. As a child, I was quiet in class, got good grades, and was not marked a “behavioral issue” by my teachers. They did not see my anxiety, my difficulty paying attention, or my struggle to understand verbal instructions. I would take longer to process information and miss details if I did not have the instructions in writing. I felt that I had to work twice as hard to do the same assignments as my classmates were doing. The frustrating part is that it would not have taken much for things to be easier for me – accommodations that I would have gotten had I been diagnosed. For the longest time, I did not realize that it did not take everyone else this much effort to get through everyday tasks, but once I did, I began wondering why it was so hard for me. For years, I thought I wasn’t trying hard enough to pay attention or understand things. It wasn’t until high school, when my therapist mentioned that it might be worth it for me to talk to my doctor about the difficulties I was having, that I even thought about having ADHD. Once I received the diagnosis from my doctor, everything fell into place. I felt so much better and had higher self-esteem, knowing I was not alone and that there were ways to make things easier. I had access to accommodations and medications to help me get through school, work, and life. Diagnoses are not just labels but the pathways to help and understanding.

Knowing the symptoms of ADHD in young females (and males!) is so important for physicians, teachers, parents, and anyone responsible for the well-being of children. An early diagnosis can save many girls from blaming themselves for underachievement, low self-esteem, challenges with their identity, and even developing other psychiatric conditions. If ADHD is left undiagnosed and untreated, it can lead to lower educational levels, higher rates of unemployment, and higher rates of divorce and relationship struggles. All it takes is the knowledge of the symptoms of ADHD in females to change lives. I hyperlinked common symptoms of ADHD above, but you can also click here to see them!

References

Da Silva, A. G., Malloy-Diniz, L. F., Garcia, M. S., & Rocha, R. (2020). Attention-deficit/hyperactivity disorder and women. In J. Rennó, G. Valadares, A. Cantilino, J. Mendes-Ribeiro, R. Rocha, & A. Geraldo Da Silva (Eds.), Women’s Mental Health (pp. 215–219). Springer International Publishing. https://doi.org/10.1007/978-3-030-29081-8_15

Enhanced Learning through a Neurodiversity Lens

By Ashley Andrade

Note: This blog post mentions Temple Grandin’s memoir “Thinking in Pictures”. While Temple Grandin has made notable contributions to the understanding of autism, particularly in terms of her personal experience, her views and approach have been controversial within the autistic community.

Some members of the community feel that her perspectives, particularly regarding the need for "normalizing" behaviors or her emphasis on specific –often medical– frameworks, can be limiting or harmful to a more inclusive, diverse understanding of autism. It's important to acknowledge the complexity of her influence, recognizing both the positive impact she’s had and the concerns voiced by members of the autistic community regarding her views.

Last month, I read Dr. Temple Grandin’s memoir, “Thinking in Pictures – My Life with Autism” and one of the main takeaways for me was the importance of understanding how differently we each perceive the world and relatedly, how our brains learn best. 

I did not know what my learning style was until I was in medical school. Up to that point, I had instinctively known that I preferred visual modes of learning, such as diagrams and pictures, and that I enjoyed real-world examples of learning topics, but up until then I had not explored the concept of learning styles. Then, in medical school, one of my academic counselors introduced me to the “VARK” Model of Learning, a concept created by Dr. Neil Fleming in the 1980’s. Fleming described that there are four main types of learners: Visual, Aural, Read/write and Kinesthetic. It was then that I realized I was a visual and kinesthetic learner. This enhanced my understanding of myself and improved my study abilities, as I now understood what learning style worked best for me. 

In Dr. Grandin’s memoir, she writes about how she has observed that people on the autism spectrum tend to have one of three main thinking patterns, including: visual thinkers, verbal thinkers, and pattern-based thinkers. A person’s predominant mode of thinking affects how people perceive their world and informs their strengths and challenges. For example, a visual thinker may excel at visualizing diagrams in their mind’s eye but may have trouble conceptualizing abstract ideas unless they create a visual symbol. 

These two concepts highlight the importance of celebrating neurodiversity and can be applied to both neurotypical and neurodivergent learners. By connecting these two concepts, we can see that the way we perceive our world both informs our understanding of the world and can lend itself to our best learning practices.  Each brain is wired differently, and this affects our strengths and challenges. This has important implications for educational practices. For example, experiential learning, or learning through hands-on experiences, is one method that can incorporate different learning styles and can be accommodated to many different types of learners. In general, learning more about these concepts can both enhance our understanding of neurodiversity and empower us all to find ways to learn best. 

Resources:

VARK Modalities and quiz for understanding your unique learning style: https://vark-learn.com/introduction-to-vark/

Different Strategies for supporting Neurodiversity in the Classroom: https://www.readingrockets.org/helping-all-readers/neurodiversity-and-children-learning-differences

Uniquely Human Podcast explores various neurodiversity topics: https://uniquelyhuman.com

References: 

Grandin, T. (2006). Thinking in pictures: and other reports from my life with autism. 2nd Vintage Books ed. New York, Vintage Books.

Introduction to VARK®:for Better Learning. VARK. (2024, April 26). https://vark-learn.com/introduction-to-vark/ 

AAC: A Parent’s Perspective on Non-Speaking Communication

by Bridget Fitzgerald, LEND Family Advocate

Image description: Declan, a white teen with brown hair and his mom, Bridget Fitzgerald, a white middle-aged woman with long hair. They are both smiling and wearing “AAC Rocks” t-shirts.

AAC is an acronym for Augmentative and Alternative Communication, the name for the  communication tools that individuals who cannot rely on speech or “mouth words” use. For families like mine, AAC has been life-changing. My 14-year-old son, Declan, is a non-speaking autistic teen who uses an AAC device to communicate.

Communication is a Basic Human Right

Communication is a basic human right. For non-speakers, AAC is not a luxury but a necessary tool to communicate. Whenever the topic of AAC comes up, I share my family’s journey and highlight the importance of respecting the voices of non-speakers—whether they have formal communication tools or not.

Presume Competence

There are no prerequisites for AAC. None. We must presume competence that everyone can learn and that everyone has a voice. My child did not take to PECs (picture exchange cards) since they were highly procedural and he was not able to openly express himself. If he was on a trial for school or insurance in which PECs were a precursor and he had to “graduate to an electronic device,” he would have failed miserably and never gained access to communication. 

Communication Over Compliance

One of the biggest mistakes I see medical, therapeutic, and educational professionals make is focusing on compliance or behavior management before ensuring a non-speaking child has access to communication and is regulated. For Declan, AAC didn’t just provide words—it gave him control over his own expression. When a non-speaking child can communicate, many of the so-called “behavioral” issues begin to fade because the frustration of being misunderstood starts to dissolve.

Declan’s Journey with AAC

Declan’s life changed the moment he was introduced to his AAC device (a dedicated iPad with the TouchChat app). Although it took nearly two years for him to fully embrace its use, his demeanor improved immediately. Even before he could navigate the device to the proper icons or type out sentences, he knew that his school team and his family were rooting for him. He knew that we presumed his competence. He knew that we believed in his potential to communicate, and that belief made all the difference.

Tone and Engagement Matter for All Non-Speakers

Non-speakers understand far more than most people think. This is true for non-speakers with and without intellectual or developmental disabilities (IDD). Even if a non-speaking person cannot respond using words or formal communication tools, they can understand tone, intent, and body language.

For example, I recently took Declan to a new doctor. While the doctor was somewhat cold toward me, he warmly greeted Declan, using a friendly tone. This was a big improvement over past experiences, where Declan was sometimes ignored altogether. The respect the doctor showed toward Declan set the tone for a more positive visit, even if his communication with me was subpar.

Spellers Need Your Patience

Not all non-speakers use electronic devices. Some use spelling boards or letterboards to communicate, and while the process can be slow, the results are pivotal. I’ve witnessed how spelling opens doors for non-speakers to express complex thoughts, emotions, and ideas that were previously locked inside.

When interacting with a speller, it’s crucial to be patient, allow time, and recognize that the communication process may look different, but it’s no less valid. Clear, direct communication, paired with a supportive and calm environment, gives non-speakers the space to express themselves fully.

For Non-Speakers Without Formal Communication Tools

Before Declan could use his AAC device, he communicated with us in countless ways—through gestures, facial expressions, sounds, and behaviors. As parents, we often interpret these signals and serve as “translators.” But it’s important for professionals to engage directly with non-speakers as well. Speak to the non-speaker, not just about them. Even if they can’t verbally respond, or they appear to not be paying attention, they are processing and understanding more than you might realize.

I’m Not My Child’s Voice

Unlike other parents of non-speakers, I will never say that I am my child’s voice. I’m his advocate, his champion, and his mom but I am not him. I work hard for him to have his own voice and he works even harder. 

AAC is not easy yet it is entirely worth it. It requires tons of patience, dedication, and respect from everyone involved. Every person deserves a voice and the opportunity to be heard. Declan, like so many other non-speaking individuals, has a lot to say. And when we provide the tools, support, and respect, we open the door for these critical voices to be heard.

Resources for Communicating with Non-Speakers

Communication First, the only nonprofit dedicated to protecting and advancing the civil rights of the more than 5 million people in the United States who cannot rely on speech alone to be heard and understood.
https://communicationfirst.org

ISAAC, International Society for AAC 
https://isaac-online.org/english/home/

I-ASC, International Association for Spelling as Communication
https://i-asc.org

AAC Awareness Month is celebrated every October. 

Communication: Music to my ears

By Melissa Singleton

Thanksgiving can be exhausting. Don’t get me wrong, I love pie and mashed potatoes and spending time with my family as much as the next person. But when the food coma hits, it hits hard. Last week, as I started to sink into a full-bellied slumber-state, my sister’s voice rang out from the other room where she sat on the couch: “Wake up Heather, wake up!”

For context, my sister’s name is Heather. She is 29 years old, also loves mashed potatoes and pie and family, and at this point in the afternoon, was just as sleepy as me. She also has a developmental disability. Her condition is rare enough that it doesn’t have a name, but what you need to know to understand this story is that it affects her ability to express herself through speech. Part of her disability is apraxia. This means that she has trouble initiating and carrying out movements, even if her muscles can technically perform the task. Often, she is able to say 2-3 consecutive words at most. Sometimes, the wrong word comes out, or a single word is repeated multiple times instead of saying new words. The words can be hard to understand if you don’t know her well, particularly without the context of other words around them. But the phrase she just produced was five words long, completely intentional, and clear as day. Why? Because she didn’t just say it, she sang it.

Our school mascot growing up was the bulldogs. One of the chants we heard frequently through our years in the school district was “Let’s go Bulldogs, let’s go!” followed by a rapid series of three claps. This same pattern – the rhythm and intonation – was what my sister used when she said, “Wake up Heather, wake up!” It was a coherent and comedic way to get the point across that she was tired at that moment, just like me. Instinctively after she chanted the words, I clapped three times in rapid succession, just like I was at a highschool basketball game. A “me too” to her “I’m tired.” 

A musical representation of the rhythm and melody of Heather’s chant with the lyrics from the high school chant on top and her own lyrics on the bottom.

Image description: Hand-drawn musical staff on bullet journal paper with a bass clef in 4/4 time signature and two measures of notes. The first measure is all quarter notes: B, B, G-sharp, F-sharp, with the G-sharp slurred into F-sharp. The second measure is two quarter notes followed by three eighth notes and and an eighth rest: B, B, X, X, X, rest. The X’s represent claps. The phrase “Let’s go Bull-dogs Let’s go *clap clap clap*” is written along the top and “Wake up Heather Wake up *clap clap clap* is written along the bottom, with each syllable corresponding to a note.

The summer before I started medical school, I used my carefully collected savings to fly to the far western side of France. From there, I embarked, along with dozens of other pilgrims, on the Way of St. James – a traditional pilgrimage across the Pyrenees mountains and to the eastern side of Spain. Each night, I stopped in albergues, which are cheap hostels that provide a place to rest and an inexpensive meal for weary pilgrims. People from all across the world walked, stopped, and rested alongside me. While the days were dedicated to silence and reflection, the evenings were for sharing food, wine, and laughter. We didn’t all speak the same language, so many conversations were made up of gestures and single words. But the nights where we truly conversed were the nights we had music. One pilgrim walked with her guitar strapped to her back. In the evenings she played the Beatles, Billy Joel, Irish folk songs, Czech pop songs. We all swayed along and sang along when we could. 

Music is a universal language. This is something we all know. But in the medical world, we often view the interventions we use, whether they’re medication or therapy, only as treatments for improving deficits. This includes music therapy. When I search a scholarly database for trials on music therapy and communication, the highest quality literature – metaanalyses of randomized controlled trials – are like this one: Music in the treatment of neurological language and speech disorders: A systematic review. They are focused on recovery or improvement of spoken words. But they fail to recognize that music is not just a method for recovering or improving our ability to communicate through speech. It is also, in itself, a form of communication.

My sister Heather did music therapy when she was little. At the time, it was an attempt to help her speak. While it may have helped with the words she is able to say now, music gave her something even better – a new method of communicating. Music is processed differently in our brain than speech. For whatever reason, my sister’s brain has an easier time with music than with the spoken word. She struggles to form a complete sentence, but sings an entire chorus with ease. Creating new sentences to describe a situation is a challenge, but adding new words to an old tune is something she excels at more than most people.

So here is my point. My call to action. Why I’ve been rambling for the past six paragraphs. I call you, whoever you are, to think of music as not only a medical treatment or artistic expression, but as a form of communication. If you have a child with a disability, encourage them to listen to and create music, and when they do, take note of what they are telling you. If you are a doctor considering a referral to music therapy, don’t only refer patients who might be able to gain the spoken word, but also those who would benefit from having a new way to communicate. And if you’re someone in my life, and you hear my sister sing you a little song, pay attention. She might just be jamming out to Party in the USA, but maybe – just maybe – she’s telling you something. Listen closely.

Promoting Safe and Healthy Relationships for Disabled Teens

By Theemeshni Govender

February is Teen Dating Violence Awareness Month. Teen Dating Violence impacts everyone, including caregivers, teachers, and the broader communities that youth live and engage in. However, teen dating violence is infrequently talked about, and as such, youth are left to independently figure out what a healthy relationship is, often turning to media. Teen dating violence encompasses several forms of violence including physical violence (i.e., use of force, including hitting or kicking), sexual violence (i.e., forcing someone to take part in a sex act when the partner does not consent or is unable to consent or refuse), psychological aggression (i.e., use of verbal and non-verbal communication to harm someone emotionally), and stalking (i.e., pattern of unwanted attention and contact that causes fear or safety concerns). Importantly, teen dating violence can occur in person, online or via technology. Exposure to teen dating violence has been shown to have short and long-term negative health consequences, including poor mental health and engagement in unhealthy behaviors (e.g., substance use). Several studies have examined teen dating violence by identity characteristics, including gender, racial/ethnic identity, and sexual orientation. However, a group often overlooked in this public health issue are teens with disabilities. 

Romantic and sexual relationships are just as common among people with disabilities. So, why then is there limited research on teen dating violence among disabled teens? One reason is that, in general, most studies do not ask about disability. However, more specific to this field, is that individuals with disabilities are often thought to be asexual or sexual behavior is seen as unsafe or inappropriate. A study that aimed to learn more about intimate and sexual health needs and the experiences of individuals with intellectual and developmental disabilities found that youth with disabilities were more likely to be exposed to all forms of violence. More detail on these findings and on teen dating violence among disabled youth can be found below in the YouTube video linked below. Another study found that 1 in 5 young people aged 12-19 with disabilities reported experiencing violence. This was twice the rate of youth without a reported disability. In addition, among high school students who had ever been on a date, girls and boys with disabilities were more likely than girls and boys without disabilities to report dating violence. In the general population, studies have shown that youth are likely to perpetrate and be victimized by certain acts of violence. Youth with disabilities also sometimes perpetrate violence, often due to not understanding what appropriate behavior is. This can be due to the fact that the responsibility to educate youth on sex education often falls to teachers, but children with disabilities are often left out of the classroom, thereby not getting this information on healthy behaviors and relationships. 

Gaps in education and stereotypes around relationships and sex for people with disabilities have made it such that youth with disabilities are more likely to be exposed to teen dating violence. Therefore, teens with disabilities should be included in prevention and intervention efforts targeting teen dating violence and be involved in conversations on healthy relationships. Current initiatives being implemented in schools should ensure content is accessible to youth with disabilities. In addition, research should focus on whether there are unique experiences of teen dating violence that youth with disabilities are more likely to be exposed to and acts they may be more likely to perpetrate to help develop more targeted prevention and intervention programs. The following websites, also linked below, “Break the cycle” and “Love is respect” provides targeted information for youth on what constitutes healthy relationships and for youth navigating relationships. Involving disabled youth in conversations and initiatives around healthy relationships ensures prevention efforts are inclusive, accessible and responsive to their lived experience, which is crucial in reducing teen dating violence in this population. 

Resources:

CDC article: https://www.cdc.gov/intimate-partner-violence/about/about-teen-dating-violence.html

Youtube video: https://www.youtube.com/watch?v=kPO6HqvGkF0

Administration for Community Living article: https://acl.gov/news-and-events/acl-blog/teens-disabilities-have-right-healthy-relationships#:~:text=People%20of%20all%20ages%20with,the%20highest%20rates%20of%20violence

Mitra & McKenna article: https://pubmed.ncbi.nlm.nih.gov/22886316/

Break the cycle: https://www.breakthecycle.org/

Love is respect: https://www.loveisrespect.org/

Advocating for Inclusion: Water Safety for Autistic Children

By Sara Zielinski

As an aquatic occupational therapist, my goals in the water are often to address motor skills, executive functioning, sensory processing…the list goes on, and on. But aside from all of the goals that I am working on with clients, I think the most important goal for my autistic clients is for them to learn water safety. 

If a child is autistic, they are 160 times more likely to drown (fatal and non fatal) than their neurotypical peers). Why might this be the case? Some say that it can be attributed to elopement/wandering behaviors, some say that it might be due to autistic children being “drawn” to water, but I think it’s more basic than that. 

Autistic children are NOT being included in water safety and swim lesson opportunities at the same rate as other children. Most community swim lesson programs, centers, and curriculums are NOT INCLUSIVE and are not developed with a neurodivergent learner in mind. When a program is not inclusive, the autistic child will attempt to participate and struggle because their needed accommodations and supports for learning are not being addressed. Ultimately, they will be asked to not return or families will choose to withdraw their child from the program, because it is not supportive of their child’s needs. How is a child supposed to learn water safety when they’re not given the opportunity to practice and learn those skills in the water? 

Later, when the child finds themselves in water, they do not know what to do! And that is why water safety is embedded into each and every one of my aquatic therapy sessions. While working on a child’s goals, we are also working on safely entering the pool, closing our mouth, blowing bubbles, holding our breath and controlled breathing, floating on our backs, pushing off of the bottom, reaching for the edge of the pool, climbing out of the water, propelling ourselves forward, etc. etc. 

Autistic children CAN learn water safety, and I see it every day with my clients. But they have to be given the opportunity to learn those skills in an INCLUSIVE environment, and sadly right now those opportunities don’t tend to exist within the larger community. It is our job to continue to advocate for inclusion throughout the community, across all settings, because sometimes that advocacy just might save a life.

ADHD Mythbuster

By Cristina Cerda

A late ADHD diagnosis in women is unfortunately not uncommon. I was diagnosed only 2 years ago. For context, I am currently 25 years old. Growing up, I always knew I was different, but I could never pinpoint what it was that made me so different. When I would leave for class, one of my roommates who I used to live with would tell me, “I knew you would be back. You always forget something.”  

I found myself constantly trying to prove to everyone that I was smart. I would get pulled for reading tests, and I was always so confused because I could read anything you gave me. But ask me to summarize what I just read? I could not tell you. I could feel it on the tip of my tongue, but I just couldn’t find the words. I found myself constantly working harder than my peers. It got to the point where I had come to terms that was just who I was. This was the way it was going to be. I could go on and on about my experiences, but these are just a few.

When I received my diagnosis, it felt like I had put on glasses and could finally see clearly. Everything I had felt and struggled with finally made sense. It made me mad at the world for a bit that no one I had interacted with up until this point had any suspicion. I felt defeated. 

ADHD has this stigma around it that it is a male dominant diagnosis, which is not true. It is often thought about this way because males are able to show disruptive symptoms more so than women because of societal norms. Women are told they are more empathetic, good with people, organized, and obedient so we tend not to show the hyperactive side externally. Women are under diagnosed because we tend to present with the inattentive side of ADHD, which is less recognizable compared to the hyperactive side. 

It is important to consider cultural influences as well with beliefs in mental health and behaviors. In my family, I was questioned if I really had this disorder and was told everyone shows these symptoms. People of color are less likely to get a diagnosis, which could be due to these cultural influences. 

Because of impulsive behaviors that are seen with ADHD, women that go undiagnosed in childhood are more at risk for sexual assault, low self-esteem, and substance abuse. It is for these reasons that we need to be more aware of the signs for ADHD and how they may present in women. Below are common signs in women with ADHD:

• Inattentive

• Fails to give close attention to detail or makes careless mistakes

• Has difficulty sustaining attention, does not appear to listen

• Struggles to follow through with instructions 

• Difficulty with organization

• Avoids or dislikes tasks requiring sustained mental effort 

• Loses things easily 

• Easily distracted, forgetful in daily activities 

• “Internal” hyperactivity

• Talks excessively

• Fidgets

• Acts impulsively or speaks before thinking

• Daydreaming, feels like thoughts are going a million miles a minute

• Easily makes friends but has difficulty sustaining friendships 

• Self harming activities

• Working 2-3 times harder than peers to be equally successful

• Fears rejection 

Resources

https://pmc.ncbi.nlm.nih.gov/articles/PMC10173330/

https://chadd.org/for-adults/symptoms-of-adhd-in-women-and-girls/

Sex education? Yes, please!

By Shelby Gordon

I believe everyone should have access to appropriate sex education regardless of disability status. As a clinical coordinator in Brooklyn and Staten Island, New York, I conducted comprehensive service evaluations, cross system crisis prevention and intervention planning, community training and education, and emergency response for individuals with intellectual and developmental disabilities. Often, individuals were referred to crisis services for “inappropriate sexual behavior,” ranging from public disrobing to public masturbation. There were stark contrasts between these individuals’ age, race, sexual orientation, gender identity, socioeconomic status, and even diagnosis of disability. Despite these differences, their reason for referral were the same. People were consistently removed from residential or day programs for these behaviors, leading to decreased social interaction and effectively taking away someone’s home. In cases of public nudity, police would get involved which directly put an individual with disabilities at risk of having legal charges being placed against them. It was a tremendous burden on both direct service providers and caregivers to support individuals who displayed “inappropriate sexual behaviors,” and I felt limited in my ability to help.

Seeing repeated referrals for crisis services that surrounded such behavior, I became quite interested in what could happen when someone does not receive sex education due to stigma or fear around disability. Rather than blame the individual, I worked closely with therapeutic coaches to provide psychoeducation on appropriate sexual behaviors on both an individual and interpersonal level. I believe that intervening early and providing appropriate sex education for individuals with intellectual and developmental disabilities could delay or even prevent these specific crisis situations. 

Dr. Sarah Curtiss at the University of Delaware has created free sexuality education for individuals with autism and with developmental disabilities. It is called The Birds and the Bees and the link to it is here. Katherine McLaughlin at Elevatus Training is another great resource in sexuality and developmental disability. The link to the Elevatus Training website is here. Let’s work together to create productive spaces for individuals with intellectual and developmental disabilities to get access to adequate sex education!

Inequitable Access and the Misuse of Special Education Services

By Regina Brock

Image description: Rows of wooden desks with wooden chairs. The desks have notebooks on them.

There are two key pieces of legislation that guide special education services in the United States: The Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973. IDEA is a law that ensures eligible children with disabilities receives a free and appropriate public education. Section 504 provides further protections, prohibiting discrimination against individuals with disabilities. Collectively, these laws are designed to ensure that students with disabilities receive the support they need to access education. Despite these intentions, inequitable access to these supports persist. 

Current research has found that some affluent parents and families have taken advantage of these systems, specifically through request for accommodations through Section 504.  As a school clinician, I along with the team- including the family - must determine if these accommodations are a needed component for their child’s education. Unlike IDEA, Section 504 has less stringent guidelines and eligibility can be supported with outside physician and educator documentation.

How does power and privilege play a role in this? Why shouldn’t parents use their resources to support their child’s education outcomes? The issue lies in the broader context of implementing these services. Affluent families have found ways to extend this legislation beyond its intended scope. These families often have greater access to private evaluations and advocacy, where low-income families may not be able to afford, have the time, or access to these critical resources. Additionally, time used to support these students who may not necessarily need the services can detract from the time of students who cannot manage without this support. 

As an aspiring School Psychologist, my role is to ensure each student is provided with a free and appropriate education (FAPE). Yet, the reality is that I cannot dictate what parents feel are a need for their child, even when those needs may not align with the purpose of these systems. Adding to this, as a black woman in the field, my expertise can often come under scrutiny where it otherwise may not. So, where do we go from here? How can we make special education more accessible and equitable for all students? 

1. Ensure parents are well informed: Clearly communicate the purpose of accommodations and how they are used to meet the child’s specific educational needs.

2. Provide alternatives supports: Offer families additional support, such as referrals to school or community based mental health services, to address underlying issues such as anxiety.

3. Educate school professionals: Dedicate time to discuss power imbalances in the implementation of 504 so that we can make more informed decisions in collaboration with families. 

For further information, please feel free to visit the links below:

https://mihsislander.org/5771/features/504-plans-data-suggests-wealth-threatens-educational-equity/

https://eric.ed.gov/?id=ED628826

https://nepc.colorado.edu/publication-announcement/2023/06/504-plan

Cooperatives, Intentional Communities and Disability Justice

By Jeannie Stranzl

I love cooperatives, or anything that could be described as an “intentional community”. I was lucky enough to get a spot in a food cooperative house during my last year of undergraduate education, and I have spent the past 5 years volunteering at a co-op café and grocery store in my chosen home city of Milwaukee. So at this point, you might be wondering - what is a cooperative organization? What is an intentional community? And most importantly, what do they have to do with disability justice?

I will start with disability justice. The Sins Invalid collective, led by and for disabled folks (with a focus on amplifying the voices of BIPOC and LGBTQ+ disabled people), defines 10 Principles of Disability Justice as follows:

“INTERSECTIONALITY
‘We do not live single issue lives’ –Audre Lorde. Ableism, coupled with white supremacy, supported by capitalism, underscored by heteropatriarchy, has rendered the vast majority of the world ‘invalid.’

LEADERSHIP OF THOSE MOST IMPACTED
‘We are led by those who most know these systems.’ –Aurora Levins Morales

ANTI-CAPITALIST POLITIC
In an economy that sees land and humans as components of profit, we are anti-capitalist by the nature of having non-conforming body/minds.

COMMITMENT TO CROSS-MOVEMENT ORGANIZING
Shifting how social justice movements understand disability and contextualize ableism, disability justice lends itself to politics of alliance.

RECOGNIZING WHOLENESS
People have inherent worth outside of commodity relations and capitalist notions of productivity. Each person is full of history and life experience.

SUSTAINABILITY
We pace ourselves, individually and collectively, to be sustained long term. Our embodied experiences guide us toward ongoing justice and liberation.

COMMITMENT TO CROSS-DISABILITY SOLIDARITY
We honor the insights and participation of all of our community members, knowing that isolation undermines collective liberation.

INTERDEPENDENCE
We meet each other’s needs as we build toward liberation, knowing that state solutions inevitably extend into further control over lives.

COLLECTIVE ACCESS
As brown, black and queer-bodied disabled people we bring flexibility and creative nuance that go beyond able-bodied/minded normativity, to be in community with each other.

COLLECTIVE LIBERATION
No body or mind can be left behind – only moving together can we accomplish the revolution we require.”

I see a lot of overlap between these Principles of Disability Justice and the Foundation for Intentional Community’s description of their guiding mission and vision:

“We face an overwhelming and inextricably intertwined set of challenges. They are all results of mutually reinforcing systems, operating on a global scale, that perpetuate harm and foster violence. They include:

• Social isolation, division, disconnection, & trauma

• Inequality, injustice, oppression, & exploitation

• Climate disruption and ecological system collapse

Because of their integrated, place-based nature, intentional communities provide unique opportunities to address a variety of issues in a holistic way. As places for sharing lives, resources, land, and purpose, they provide and maximize an interconnected set of ecological, social, and economic benefits. As a movement, intentional communities have unfulfilled potential to

• Support the wellbeing of the people who live in them

• Support each other

• Support the shift the world needs towards cooperation, justice, and resilience”. 

Cooperative organizations, likewise, typically rest on a foundation of the 7 Cooperative Principles that were officially defined in 1995:

“Voluntary membership: Any person who is willing to accept the responsibilities of co-op membership and who wishes to use the services of a cooperative is welcome to become a member.

Democratic member control: Co-ops are controlled by their members. Members have control over setting policies for the co-op and making decisions for the cooperative.

Member economic participation: Members contribute to the capital of the co-op democratically and equitably. Most of the capital of a co-op remains the property of the co-op and isn’t redistributed to members.

Autonomy and independence: Co-ops are meant to be autonomous and democratically controlled, meaning they aren’t subject to control by outside organizations.

Education, training and information: A cooperative provides education and training to members and board members to allow them to contribute to the development of the co-op. Cooperatives also seek to inform and educate the public about the mission and operation of a co-op.

Cooperation among cooperatives: Co-ops will often work together, creating regional, national and international structures that help to improve the community and create a better world.”

Concern for community: The policies approved by the members of a cooperative should help to develop the community around the co-op in a sustainable way.”

What I see as the foundation bringing these three concepts together is the recognition of the value of the whole self, of every part of the ecosystem in which we live.  I have personally experienced and benefited from this as a multiply neurodivergent member of cooperative organizations and intentional communities, because I can contribute what I am able and be valued and accepted for my authentic self rather than having to perform at a level that I cannot physically or mentally sustain. Valuing of the whole self and the whole ecosystem is the root that unites all of the other parts of these respective principles, because it acknowledges that we all cannot do everything and be everything to everyone. If we want to be healthy living beings and to live on a healthy planet, we cannot deplete our own and others’ resources without replenishing. We cannot do it alone, because we all as living beings on this planet need each other in order to survive. Incidentally, these principles also align closely with my academic discipline of Public Health, because Public Health aims to honor the individual while also having a macro-level focus on the health and wellness of whole communities. Overall, the principles of cooperatives, intentional communities, and disability justice inspire me personally, academically, and professionally, and I aim to put them into practice in some way or another during the rest of my life.

Avoiding FOMO: Making Slang Accessible for AAC Users

by Alicia LaRouech

CW: discussion of explicit language, brief mention of abuse and sexual assault 

Image description: An augmentative and alternative communication (AAC) device in the form of an iPad with a blue case. The device screen contains 60 buttons, all of which contain a word and/or a picture symbol, such as go, play, on, off, etc.

Image from PRC-Saltillo.

As a pediatric speech-language pathologist (SLP), I spend a lot of time thinking about how to teach kids language. I also spend a lot of time listening to kids, especially when they say the most creative, funny, and insightful comments…including calling each other “poopyheads” or some variation of the term. When thinking about kids who use augmentative and alternative communication (AAC), it’s incredibly important to know how to support all sorts of opportunities for communication with family, friends, and others in the community, as well as consider what specific language they may like to access for those conversations. 

Customizing an AAC user’s device to include slang, “bad” words, and other meaningful selections can make a world of difference in a child’s buy-in of the device and allow them to communicate with their peers in a more authentic way. Providing kids, teens, and young adults with access to words such as “dab,” “rizz,” or, as one client of mine liked to exclaim, “yucky!” allows another outlet of self-expression. These are words they hear their peers use throughout the day and that hold socially-meaningful value within peer interactions. In addition to core words–those salient words that are used everyday across a variety of environments, such as “go,” “on,” and “more”–it’s important to model other communicative functions, including exclamations, social comments, and rejections, among so many others. I once had a student who loved selecting “oops” after stacking and knocking over blocks, and we would giggle over “uh oh!” when the bucket was empty.

In addition to adding a sense of playfulness and connection for AAC users, there is a very serious side to providing individuals with access to more taboo or sensitive subjects. The Northwest Augmentative Communication Society notes that children with disabilities are often not provided with opportunities to learn about consent, setting boundaries, sexual and romantic involvements, or even their own body.  An appropriate and tactful approach can certainly be provided on these topics for AAC users, but the bottom line is they need to have access to these words and concepts on their devices. Abuse, sexual assault, and ableism are very real and, unfortunately, too-frequent occurrences for people with disabilities. How do we expect individuals with disabilities to share their experiences of what is happening to them if they are not provided the words to accurately describe it? Some AAC applications have pagesets containing icons for genitals, phrases about safety and sexuality, and additional resources regarding these topics, while other applications are lacking in this area. 

Of course, there are no hard and fast rules regarding when, where, or how it’s appropriate to add slang, profanity, etc. Some important considerations include cultural and familial boundaries, age, clinician bias on what “appropriate” even means, and not conflating terminology from other dialects or cultures as slang. Overall, one of the biggest takeaways is that AAC is meant to grow with an individual and support them in all areas of life. AAC users deserve access to whatever language is best for them to make jokes, express wants and needs, protest, complain, and generally just communicate across all situations. After all, who are we to deny someone the opportunity to exclaim “fuck!” after stubbing their toe or burning their food?

References:

Cox, L., Ingles, M., & Wylie, K. (2024). Guys, like…yeah…this stuff might actually be pretty important. Teenage vocabulary in peer interactions. Implications for teen AAC users. Journal of Clinical Practice in Speech-Language Pathology, 26(1), 42-57. https://doi.org/10.1080/22000259.2024.2317470 

Hartmann, A. (n.d.). Core word teaching strategies. AssistiveWare. https://www.assistiveware.com/learn-aac/learn-about-core-word-teaching-strategies

Northwest Augmentative Communication Society. (n.d.). AAC & Consent, Safety, and Dignity. https://nwacs.info/aac-and-consent-safety-dignity

Strickler, H. (2022, April 27). Uncensored AAC: Exploring AAC access to profanity and slang [PowerPoint presentation]. The USSAAC Webinar Series. https://isaac-online.org/wp-content/uploads/USSAAC-Webinar-April-27-2022-1.pdf

The Transformational Power of Seeking to Understand

Erin C. Green

I attended the Association of University Centers on Disabilities (AUCD) conference in Washington DC for the first time this November and have been tasked with writing a reflection on my inaugural attendance; I’m finding it nearly impossible to do so without reference to the concentric layers of context within which I experienced this event. On the broadest level, and purely coincidentally, I found myself in our nation’s capital on what came to be the day we re-elected a president who openly mocks the disabled and has overseen myriad attempts to dismantle our supports and protections, who disparages racial, ethnic, and religious minorities, and who threatens the safety of women and LGBTQIA+ communities. In sharp contrast, the middle cylinder of this telescope of temporal intersection was the conference itself, a beacon of the power of coalition and community. And finally, the narrowest focus fell on my own health, as I struggled to absorb this conference’s knowledge and wisdom despite a novel, as yet unknown illness that left me exhausted, nauseated, and struggling to eat.

In searching for a common thread to tie together this week of disparate experiences, I land on the concept of ‘misunderstanding’: the pervasive misperception of the autistic experience, highlighted from multiple angles at AUCD; the egregious misjudgment of my medical situation that I initially encountered at urgent care; and – in the most optimistic and generous-of-spirit light I could attempt to shine on the outcome of our national election – the apparent misapprehension held by half the country regarding the intrinsic value of their fellow humans.

As I ponder, I realize there is a sort of spectrum ranging from relative innocence to direct culpability in these areas of misunderstanding. At what point, for example, does a lack of knowledge about another’s experience become willful ignorance? In the case of our national lapse in judgment, I would argue that heavily marginalized groups bear less culpability, while those privileged with financial means and access to quality education are inexcusably to blame for their conscious, premeditated choices, whether via complacent ignorance or malicious cynicism. I believe that, in all arenas, we owe it to each other to intentionally and perpetually chip away at our own areas of incomplete understanding, to seek out and illuminate our blind spots as a matter of obligation to those with whom we share our terrestrial existence. 

This imperative applies equally to biases held regarding those with differing neurological operating systems. Through a range of interactions with fellow autistic self-advocates while in attendance at AUCD, I added to my collection yet more stories of fundamental misunderstanding of who we are and how we exist in the world. The familiar tales of being deeply underestimated cognitively, linguistically, and socially stack up alongside so many individual anecdotes, illustrating sharply how being viewed through the wrong lens begets consequences ranging from painful to punitive: a high school student who put his head down on his desk to better concentrate on captivating lecture content, reprimanded for a misperceived failure to pay attention; a future Harvard grad blocked from accessing mainstream academic content in elementary school via placement in self-contained special education due to communication differences; and the scores upon scores of autistic women, misdiagnosed so routinely with psychiatric disorders rather than autism as to render this misattribution of symptoms a gaslit rite of passage.

Upon returning home from the conference, with my illness still unresolved and clear signs of jaundice emerging, I made my way to urgent care. And, in an abdication of medical duty that I have struggled to make sense of, I was sent home with instructions to follow up with primary care, a prescription for nausea medication, and the differential diagnosis of “psychiatric problems, depression, or abdominal issues.” As an autistic adult, I often struggle to advocate for myself in real time within confusing and maddening situations of this sort, and the degree of challenge is inevitably magnified by the brain fog of acute illness. As I headed home in an Uber, bewildered, concerned for my health, and feeling utterly powerless, I somehow managed to convince the scheduler on the phone that I needed to be seen sooner than the initially-offered nine days later. By the grace of the universe, I snagged an appointment within the hour at the same facility I’d just left – only now with internal medicine rather than urgent care - and turned my Uber around.

The internal medicine doctor immediately recognized my yellowed eyes and sublingual mucosa along with my broader pattern of symptoms as indicative of an acute liver process and urged me on to the emergency department.  Initial liver enzyme levels were sky high, and providers recognized the urgency of my situation. I was admitted, underwent further testing, and ultimately was diagnosed with hepatitis A, a best-case outcome with a prognosis of a full recovery of liver function as the virus eventually burns itself out. However, I remain acutely aware that, had my illness not been self-limiting, the initial misinterpretation of my clear symptomatology could have had dire medical consequences. I am left to wonder – was there something about the way I communicated or interacted within that initial visit that lent itself to misunderstanding? I run anxious for sure, but do not have a history of depression or psychiatric challenges. What did this provider see that led him to dismiss yellow eyes and a week-long inability to eat? And, if this truly had been a psychiatric need, would I not have been deserving of compassionate and timely care in that scenario?

My conclusion, after pushing past the reflexive self-doubt, is simple: my experience was rooted in systemic ableism and misogyny, intersecting dangerously to deny me equitable access to needed health care services. Of one thing I am certain; this injustice is not rare, especially among women. Further, my experience feels like a microcosm of the broader autistic existence, and likewise, of the circumstance of being ‘other’ in a society that aspires to the ideals of diversity and inclusion but falls so very far short when choices pitting altruism against self-interest and expediency must be made.

Ultimately, as we continue to fight back against the injustices born of a failure to truly see, understand, and value one another, I believe there is a powerful antidote to be found in genuinely seeing, understanding, and valuing ourselves. I view self-knowledge as a critical foundation of self-advocacy, one worthy of ongoing and committed effort. And, for our allies, facilitating the development of deep self-knowledge has the power to serve as one of the most genuinely transformational therapeutic goals to be undertaken, across disciplines and spanning age groups. We win when we know who we are, to our cores, with such ironclad certainty that we cannot be shaken by those who seek to destabilize, demean, and devalue us. We win when we see ourselves through the right lens, with depth and clarity, illuminated by the light of our inherent and inextricable value.