Determined Parent Crafts Program To Support College Students with ASD
By Kim Jameson
About the Author
Kim Jameson has been making positive changes in the Mid-South through her entrepreneurship, community leadership, innovation and perseverance for the past 25 years. She was honored by the Memphis City Council with the title of Honorary City Councilman in recognition of her outstanding contribution to the city of Memphis. She has a bachelor’s degree in psychology and a background in cognitive neuroscience.
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Many of us have heard the phrase that necessity is the mother of invention. As a parent raising a son with autism spectrum disorder (ASD), I was always looking for resources and programs to assist my son, Joseph. There were limited resources and programs available when Joseph was growing up, and nothing was covered under medical insurance. Over the years, the professionals I reached out to for assistance had difficulty diagnosing Joseph and figuring out how to best help him. I have had to do a lot of problem solving along the way.
Luckily, I found some help when Joseph was in first grade. The Shelby County School System did an excellent job providing some of the services Joseph needed to be successful in school. Joseph had always had an Individualized Education Plan (IEP) in primary and secondary school, with a terrific support team to assist him. As Joseph was about to graduate from high school, I was both excited and apprehensive when thinking about his future. I was thrilled that Joseph would be attending my alma mater. In fact, both my daughter and I were recent graduates of Christian Brothers University in Memphis, TN. I thought the individualized attention from faculty and smaller class sizes would greatly benefit Joseph. Although I knew that at the university level, Joseph would no longer have his IEP in place, I naively assumed that the university’s disability services office would provide the assistance he needed to be successful in college.
The summer before Joseph started his freshman year at Christian Brothers University, I spent a lot of time swimming in the pool on CBU’s campus and observing groups of students “hanging out” together. I wondered where Joseph would fit in? Joseph did not enjoy team sports, and he probably would not be interested in joining a fraternity. I thought that Joseph, and other ASD students, would benefit from a social organization that helped them fulfill their social needs during their college years.
I met with one of my former Christian Brothers University psychology professors, Dr. Rod Vogl, during the summer of 2015 to discuss my ideas for putting together an organization or social program for ASD students. Dr. Vogl is a cognitive psychologist who was a department chair at the university, so he was familiar with the inner workings of the university. Dr. Vogl and I met with university personnel from the Office of Student Disability Services and Academic Services to discuss my ideas for creating a social program/student organization on the Christian Brothers University’s campus. STARS (Students Tackling Autism-Related Syndromes) was born in August 2015.
Although STARS began as a social club/student organization, it quickly became evident that a social program would not meet all the needs of ASD students. For example, Joseph had several anxiety attacks during the orientation, the weekend prior to the beginning of the semester. The transition from high school to college was overwhelming for him. He was experiencing a great deal of change (e.g., moving into a dorm, being shuffled from one meeting to the next). Because I had been working with Dr. Vogl and developing STARS on campus, university officials contacted Dr. Vogl and me, and we were able to calm Joseph and help him through the many transitions he had to make. These were very challenging times.
Even though Joseph was receiving academic accommodations for his classes (e.g., extended time on exams), he was struggling because college is much more demanding and difficult than high school. In addition, he did not have the team of teachers and professionals there to remind him of assignments or keep him organized. A college student is expected to read the syllabus and be prepared for class. In a nutshell, Joseph’s support team had vanished. He was expected to self-advocate and use his own organizational and time management skills. It is important to note, too, that the parents are left out of the loop at the college level. College students are adults, so university officials cannot discuss student situations with the parents unless the student provides a written release of information (something else that was a surprise to me).
With the academic challenges being faced by Joseph and other ASD students, I set out to create another program in STARS; one that would address some of these challenges. The IEP team had been a successful concept previously, so I used it as the inspiration for this program. I wanted ASD students to be supported by a “team” of people (including their professors, academic advisor and parent(s)/caregiver). I created the TEAM (Teaching Employment and Academic Mastery) program. This program provides weekly academic coaching and mentoring to ASD students. Both Dr. Vogl and I work with students on their organizational and time management skills, self-advocacy and much more. We also provide academic advising and assistance in creating their class schedules.
The TEAM program helps students transition from high school to college and from college into a career. We partner with the university’s Career Services to provide workshops on career-building skills. Career Services also secures internships for students. For example, Joseph has already completed two internships. STARS will continue to work with Joseph and other ASD students as they transition into their career. We have found that these students require additional support in preparing for the interviews as well as making the initial connections with their supervisors. In fact, approximately 85% of college graduates with ASD are either unemployed or underemployed. We find this to be unacceptable. We are currently trying to identify employers who would be interested in employing people on the autism spectrum.
Identifying potential employers is just one of the many challenges that we have faced along the way. One of the biggest challenges we have faced is with funding. Since 2015, we have been self-funded. STARS Inc. became a 501(c)3 in December 2018 and evaluated by the Community Foundation of the Mid-South in January 2019 in order to raise funds for this organization. Community Foundations pool donations from private foundations and serve as a vetting agency to ensure the nonprofits they serve are following “best practices” and upholding all of their requirements. In addition to fundraising, in January 2019, STARS Inc. became a service provider for Tennessee’s Vocational Rehabilitation Services. Vocational Rehabilitation pays for the TEAM services as long as the student has a diagnosis of ASD and has filed the Free Application for Federal Student Aid (FAFSA). It has been our belief and goal that students or parents should not be charged for the services that STARS provides.
Another challenge we have encountered is that many people are reluctant to self-identify as being a person with ASD. Some ASD students are concerned with the stigma and do not want people to know that they are on the autism spectrum, while other students may not realize that they have ASD. Also, we have found that many students do not self-identify to the Office of Student Disability Services because they do not see themselves as having a “disability”. Recently we have learned that a student who was diagnosed with ASD and actively participated in the STARS Social program, did not receive accommodations because her mother was concerned that it would leave a “black mark” on her daughter’s record.
The greatest challenge that we have faced is naysaying. From the time Joseph was very young, I have been told from professionals in the autism field that Joseph would never drive or be successful in college. Joseph drives and will graduate from Christian Brothers University this academic year. Every time I have encountered a hurdle, I have had to develop a strategy to solve the problem. Building this program has taken tenacity. Most people are resistant to change (whether they are on the autism spectrum or not). I enjoy the challenge that comes with change and creativity. As a professional floral designer and entrepreneur, I have learned how to bring together the pieces to create the whole. It has taken time, patience, faith, and a lot of work to nurture STARS Inc. and its programs. It has been a true labor of love. It is a privilege and an honor to work with each of the students. Each one of them is unique and brilliant in their own way. To me, each one of them is a “star.”
Our future is in these stars (and STARS Inc.). We want to help ASD students transition into a career and independent living. We will be focusing on more employment issues as the students graduate and enter the workforce. In addition, we are building other programs for a more ‘holistic approach’ for personal growth. For example, we are growing “Stewardship with STARS,” a program focusing on volunteerism, good citizenship and ‘giving back;’ and “Inside Out with STARS” focuses on students’ health and well-being, since many ASD students do not engage in regular exercise or outdoor activities. This program aims to improve overall physical and mental health (e.g., reduce anxiety). Developing each of these programs is a challenge. However, we are up for the challenge.
We are producing a program model that can be used in colleges and universities across the country. Building STARS Inc. involved the right combinations of people and talents at the right time and place. We want to take our experiences and share them with others, so that we can provide the support that people on the autism spectrum need to have happy, productive lives.
For more information about STARS, Inc. please see our website: https://www.collegestars.org