Organization Profile: Autism Tennessee

“He’s artistic?”

“No, he’s Autistic!”

Today, if I asked a room of people if they knew what autism is, I am confident that a majority of them would say “yes.” However, if I were to ask this very question forty years ago, I am certain the answer would not be nearly as resounding. In fact, the response may have read similar to the dialogue above, which is a scene from the film Rain Man, where a nurse who has never heard about autism is confronted with a person on the spectrum. When the film Rain Man starring Dustin Hoffman and Tom Cruise was released in 1988, the then unfamiliar subject matter of autism was brought to mainstream media. The film shows the evolution of the relationship between two brothers Charlie, and Raymond who has autism. While in recent decades, the film has been criticized for promoting misconceptions about individuals on the autism spectrum, it has played an integral role in increasing autism awareness within the public. Fast-forward to now, the CDC reports that 1 in 44 children are diagnosed with autism spectrum disorder (ASD) and that boys are 4 times more likely to be diagnosed than girls. With the prevalence of autism diagnoses in society, the need for awareness and support for individuals on the spectrum is higher than ever.

Autism Tennessee is a non-profit organization based in Nashville, TN that is dedicated to enriching the lives of individuals on the spectrum. To accomplish this mission, Autism TN targets three spheres: advocacy, education, and celebration. One of the organization’s main goals is to advocate for those on the spectrum and their families by keeping up to date on the policies that affect the community. Autism TN acts as an intermediary to voice the concerns of affected individuals and incite change on both the local and national levels when necessary. On the education front, Autism TN is dedicated to providing individuals on the spectrum and their families with the resources and information needed to navigate their circumstances and offer support through their neurodiverse community. Finally, the organization aims to celebrate neurodiversity and offers a community that understands the unique challenges and fears that may arise in each individual’s journey with autism. Ultimately, Autism Tennessee strives to meet the varying needs of individuals on the spectrum, and equip them with the means to lead a life as independently as possible.

Autism Tennessee runs 100% on donations, mainly supported by grants and sponsorships. The organization applies for grants through various support organizations around Tennessee, such as the Community Foundation of Middle Tennessee and the Disability Coalition. To fund some of their main events, such as the Pajama Walk and Birthday Bash, they get sponsorships from local Nashville institutions and businesses. For example, the most recent Birthday Bash was sponsored by the Adventure Science Center in Nashville. The last portion of their funding comes from membership dues. As a local organization that is entirely dependent on donations, funding is usually the number one challenge, especially when competing with a larger national organization with a much more recognizable brand name (i.e. Autism Speaks).

Autism TN offers a community that understands the fears and challenges that come along with being on the spectrum or having a family member on it. Most importantly, they emphasize the importance of inclusion and neurodiversity as exemplified by the leadership within the organization. The board of Autism TN is comprised of individuals who are personally touched by the autism community or are on the spectrum themselves. For example, the program director Mrs. Uriri, whom we interviewed, had a daughter who was on the spectrum, and the Teen & Adult Program manager Mr. Griffin was on the autism spectrum himself. Having members on the board who understand the worries and the needs of the community makes Autism TN a more supportive and productive environment for individuals on the spectrum and their families.

One of the main forms of support Autism TN provides is through the HELPline, which is a platform for parents with children on the spectrum. The HELPline provides information regarding resources such as therapists, psychologists, and support groups. It is one of the most successful initiatives, managed by parents and individuals who have a personal connection to autism. Given the vast information and resource database they maintain, and the network of volunteers they employ, Autism TN is able to assist and answer any questions families may have regarding their circumstances. To widen its reach within the Nashville area, Autism TN partners with other local organizations to improve the support they provide to their members. They partner with medical groups such as The Children’s Hospital at TriStar Centennial Medical Center and with therapy groups like Accessible Hope Therapy Center and The Speech, Language, & Learning Center to offer medical and educational help for people on the spectrum. Through these different partnerships with organizations in various fields, Autism TN offers a wide variety of resources for the larger autism community in Nashville.

To gain an in-depth understanding of the various programs at Autism TN, we interviewed the Teen & Adult program manager Mr. Griffin. The Teen & Adult program, as per its name, is geared towards young adults who are on the autism spectrum, with the main goal being to “teach people on the spectrum to empower themselves” (Griffin). Mr. Griffin believes that the primary method for accomplishing this goal is by equipping individuals on the spectrum with the necessary social skills to be able to lead an inclusive life in society. As a person on the spectrum, Mr. Griffin has had first-hand experiences where the lack of social awareness played to his detriment. Before his official diagnosis of autism, there was an incident that happened during his time at Vanderbilt University that made him reflect on his own social skills. During one of his classes, when Mr. Griffin was asking for clarification, the professor wasn’t able to grasp the nature of his question and give him a satisfactory answer. Instead of waiting till the end of class, or going to office hours, Mr. Griffin, continued to ask the same question repeatedly, not realizing how his actions were disrupting the class. Looking back at this event, he was shocked that the professor didn’t kick him out of class. After his diagnosis, he was able to understand why his actions were not conducive to his environment, and why he wasn’t able to empathize with the situation at the time. Having understood the importance of learning appropriate social behaviors through his own experiences, when he joined Autism TN, Mr. Griffin, formed the Social Club & Game Day program.

Picture of Social Club& Game Day program (from Autism Tennessee home page)

The Social Club & Game Day program is a monthly opportunity for young adults on the spectrum to get together to play games and practice social skills in a supportive environment. When the program first launched, only three members were joining regularly, but it has now grown into one of Autism TN’s most successful projects, with around twenty-five members joining each event. The program allows for individuals on the spectrum to make friends and interact with different people all while forming an organic support group among parents. Mr. Griffin emphasized how kids and teenagers are at a stage in which they are generally more accepting of individuality, and he wanted to offer a safe outlet where these young adults can express themselves. Another important initiative that Autism TN spearheaded is the Sexual Identity & Inclusion Alliance (SIIA). This program recognizes the intersectionality present with having autism and being in the LGBTQ+ community, and how these individuals have the most challenging time finding an inclusive community. This program was made to “provide support and resources to a growing segment of community by providing a safe environment for open communications between consenting adults on the spectrum” (Autism TN). Knowing the varying needs of its members, it is in the organization’s mission to encourage individuality by providing support for all facets of the community in a safe and positive environment.

Autism TN also makes an active effort to work with the greater neurodiverse community, aside from just Autism, to achieve its goal of creating a more inclusive society for all individuals with neurodevelopmental disorders. Most recently, Autism TN partnered with the Down Syndrome Association of Middle Tennessee to create the “Our Stories” program to help people with neurodevelopmental disorders learn more about self-advocacy. The program, which corresponded with Autism Acceptance Month, focused on teaching participants how to talk and express their needs to legislators. Ms.Talbott, one of the neurodiverse individuals who participated in Our Stories, addressed the issue of neurodiversity in the public education system. She advocated for educators to undergo a more intensive training program before teaching kids with autism, and for having more staff at schools to allow for more one-on-one attention. As Talbot stated, it was an opportunity for the community with neurodevelopmental disorders to “to actively speak” and to move on from being “spoken over.”

Self-advocacy, as addressed in the event above, is one of the major issues the autism community faces as a whole. However, there are also individuals on the spectrum who are unable to advocate for themselves. For example, in the film Rain Man, the protagonist Raymond Babbit, who is on the spectrum, is unable to advocate for where he wants to live. When the doctor asked Raymond his opinion, he responded with “yeah” to every question thrown his way. He was unable to decipher the questions and give varying answers.

“Doctor: Ray, do you want to stay and live with Charlie?

Raymond: Yeah.

Doctor: Or do you want to go back to Walbrook?

Raymond: Yeah.

Doctor: Which is it? Go back to Walbrook or stay with Charlie Babbitt?

Raymond: Go back to Walbrook, stay with Charlie Babbitt.”

In this circumstance, it was up to a third party to decide what is best for Raymond in the situation. When people are unable to advocate for themselves, it is important to have a system in place that is able to serve the needs of these individuals – specifically in the form of public policy. Understanding the crucial role policy plays in the lives of individuals on the spectrum, Autism TN has it in its mission to educate its community on policy and advocate for the betterment of autism policy.

To get a better understanding of the advocacy portion of Autism TN’s mission, we interviewed Program Director Omeghbhai Uriri. In our meeting, Mrs. Uriri discussed how the organization is able to incite change on the public policy front. On the local level, the organization collaborates with the board of directors of the city’s special education department to make recommendations and voice the concerns of the autism community in Nashville. They also work directly with Metro Nashville school districts. Through the HELPline, Autism TN can gauge where people’s concerns lie and what changes they would like to see on the educational support front. Serving as an intermediary between the autism community and the local education department, organization members can have productive conversations with directors in the department to set impactful changes in motion. To support autism initiatives more broadly, Autism TN members hold board seats on various state coalitions that advocate for public policy change, one of which is the Tennessee Disability Coalition. The coalition is a non-partisan organization that advocates for public policy and champions equal opportunity for individuals with disabilities. Autism TN also has representation in the MPPC (Middle Regional Planning and Policy Council) through the Tennessee Department of Intellectual and Developmental Disabilities. Through active involvement in the political sphere on both the local and state level, Autism TN can inform and educate its community about the latest developments in policy concerning autism. The organization is able to relay information to the community, whilst listening to the concerns of parents and individuals on the spectrum and advocating for change.

To enhance our understanding of Autism TN’s impact on public policy, we asked the Program Director, Mrs. Uriri, what she would like to see changed on the policy front to support individuals on the spectrum. The most pressing concern she relayed was the lack of support for individuals who are more severely disabled on the autism spectrum. This includes individuals who are nonverbal, have sensory issues, or have more severe cognitive deficiencies. Currently, the system is set up to better aid individuals who are more high functioning as opposed to neurodiverse individuals who may need full-time care beyond childhood. Dr. Molly Candon, Ph.D. from the University of Pennsylvania explains, “Although policies may target individuals with ASD who have higher service needs, the evaluation of these policies frequently focuses on an average effect.” With a majority of the policy addressing only the needs of individuals with milder disabilities, individuals with lower-functioning autism tend to “fall into the cracks” (Program Director Uriri). Secondly, another issue raised by Mrs. Uriri is the difficulty individuals on the spectrum and their families have with navigating the law. As it stands, the support a child on the spectrum receives is entirely dependent on the parents’ ability to advocate for their child. This includes knowing the law and having the means to access resources such as therapists, and psychiatrists. Autism TN addresses this discrepancy by trying to educate its community on changes in policy and providing the tools to get the most high-quality care. However, Mrs. Uriri calls for the need for transparency and accessibility from the policy side to further assist individuals on the spectrum.

To further aid Autism TN in its mission, from a policy stance, we propose that researchers adopt better methods to gauge the severity of Autism within a population, and based on that, create more tailored laws that support each person’s needs. For context, there are three tiers of Autism Diagnoses. ASD Level 1 is the mildest diagnosis, and individuals are considered high-functioning with the need for some support. ASD Level 2 is considered mid-range, with individuals needing substantial support in daily life. Finally, ASD Level 3 is considered severe, where diagnosed individuals require a very high level of support and have a very limited ability to communicate and socially engage with others. While these diagnoses are divided into three boxes, it is important to note that autism is a spectrum disorder and each individual faces a set of unique challenges. However, having a general sense of severity when applying the law can go a long way in understanding the needs of varying individuals on the spectrum. For example, recent legislation that has made strides in autism support is the Autism CARES act, which was passed in September 2019. The act “ensures support for research, services, prevalence tracking, and other government activities” and allocated $369.7 million in federal spending to autism effort (U.S Department of Health and Human Services). To better address individuals with more severe needs, the CARES act can allocate its research funding to further classify how the different levels of autism diagnoses translate to the level of support people need over their lifetime. This will ensure the findings are applied to policy so that all neurodiverse individuals receive the appropriate amount of care.

Ultimately it is Autism TN’s mission, as Mr. Griffin puts it, to see a society with “more tolerance and understanding” towards individuals on the spectrum. To make strides in policy that address the needs of individuals on the spectrum, we not only need strong advocates like Autism TN, but a society that can empathize with the autism community. By understanding the importance of neurodiversity, we as a society can begin to create a more inclusive environment where “being different” is not only accepted but embraced. The importance of understanding and embracing one’s differences is perfectly illustrated in the evolution of Charlie and Raymond’s relationship throughout Rain Man. When first introduced to his brother, Charlie would cry out in frustration saying “Ray, did you f*** hear what I said? SHUT UP!” Through the progression of the film, we see how Charlie begins to empathize with Raymond and wholly accept him for his differences. Concluding with Charlie’s ultimate declaration: “What you have to understand is, four days ago he was only my brother in name. And this morning we had pancakes.”

By Preethi Edara and Min Joo Kim

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