VOLUME 02
ISSUE 01

Supporting College Students on the Autism Spectrum
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ON THE SPECTRUM IN
ADULTHOOD
November 20, 2020
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A NEWSLETTER PROVIDING RESOURCES FOR THE
ADULT AUTISM COMMUNITY
FEATURE EDITION
Brought to you by the
Autism Services (RCAAS)
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A MESSAGE FROM
THE COLLEGE SUPPORT PROGRAM (CSP) COORDINATOR
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College can be an exciting time in a student’s life, filled with new relationships, opportunities, responsibilities, and challenges. Although the transition into college can be fun, there are some aspects that may be hard, especially for an individual with Autism Spectrum Disorder (ASD). Autistic teenagers and adults tend to have lower participation in education beyond high school, but that is not to say that it is not possible. Managing the independent aspects of life at a collegiate level can be difficult, but luckily, at most schools, the student does not have to tackle these hurdles on their own.
The first line of support for students will typically come from the university’s office of disability services to gain academic accommodations, which is a great start, but there may be a need for additional support for a more valuable college experience overall. At Rutgers, there is a customized and comprehensive program dedicated to supporting autistic undergraduate students and many other schools have similar supports. For a list of college programs for autistic students (see Resources column).
In this issue of OTSIA, you will read various perspectives from a student, a peer mentor (I was one myself as an undergrad here!), to a parent, to professionals with whom we work at the university. To support our students adequately, it takes a collaborative team with our university partners. The voices in this newsletter are a representation of some views on college supports. Students interact with numerous campus resources almost on a daily basis, and the supports that exist can be vast. We want students to not only to survive their time in college, but thrive!
I invite you to learn more about our program by visiting the CSP website.
Sincerely,
Courtney Butler, MS, BCBA
Program Coordinator
College Support Program
P.S. Go Scarlet Knights!
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A STUDENT'S STORY
Jane Matto
School of Arts and Sciences (SAS) Honors College
Rutgers University Undergraduate and CSP Student
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I have been at the CSP, living on campus (except during COVID), since I began at RU as a first-year. I love my two minors, Creative Writing and Italian, which I never thought I would be interested in before coming to college in terms of how difficult and specific they are. One of the most useful resources that the College Support Program provides is my CSP Coordinator, because she is good at reaching out to my professors. It usually takes a lot of energy for me to come up with what to say to my professors, and sometimes it just feels like my brain is so full that I don’t have the space or energy to come up with what to say. It’s useful when my Coordinator is able to help me.
I also think that the weekly meetings with my Coordinator are enjoyable, because I have a chance to talk about the things that are happening in class that I do not completely understand. One of my main difficulties is definitely not being able to understand directions for assignments. If my professor gives me something vague, I will usually end up worrying that I am going to write something completely different from what s/he was asking. My Coordinator helps me comprehend what my professor is attempting to say, and together we can talk through some of those issues. I really benefit from my conversations with her, because it feels like my Coordinator understands me and the language I speak. Often, we are able to work together to come up with a solution that I might not have thought of on my own. The Office of Disability Services (see sidebar) is also very helpful, because they provide me with extended time on tests and other accommodations if needed.
The current remote environment has presented some challenges. Some of the really difficult parts for me are minor things that are just annoying, such as the Wi-Fi not working. It’s also really difficult taking classes from home, because it is easy to get distracted. For example, minor noises in the background will at times make my head hurt. It’s hard to put into words and explain, but sometimes my head really hurts when there is too much noise. When I’m trying to form a clever thought and it's noisy, I can’t get more than a few sentences out without having to stop. Typically, I will spend about an hour or so with my professor just so s/he can explain the directions to me well enough so that I feel comfortable completing the assignment. Asking for help feels like a challenge sometimes, and communicating specific concerns can be difficult. Not having the professor there in-person is tough. Usually, I would just go up to them and ask a question, and they would get back to me right away. Now, I have to wait for their response.
For teachers, I would say that they should definitely be mindful of sarcasm, because I don’t understand it and I don’t really like it either; I sometimes find it offensive. It bothers me that I don’t get it, and I find it rude. Also, it’s important not to tell too many jokes that only a few people might get. That is what I would say to professors, and also, to please reply to emails right away.
For me, the main highlights of college have been the friendships I have made, the people I have met, and the people that I live with. I also think that maintaining friendships can be difficult, because college is not at all like high school, when you were able to see your friends in the hallway. That is one reason why it’s difficult to attend a big school, because there is not always a guarantee that you will see your friends. You have to actively meet up with them, and I’m not always great at initiating those plans. Friends are not always accessible to hang out, but I hope that they ask ME to hang out, so that I do not have to summon the courage to ask, because that feels like it takes way too much effort at times.
When the pandemic started it felt like somewhat of a relief, because I didn’t have to worry about social interactions as much anymore. I spend a lot of time stressing over who I’m going to hang out with, when we are going to hang out, and what we are going to do, but now I have an excuse not to. It’s nice not to have to think about what will happen if something goes wrong, because I do not have to make that decision anymore. On the other hand, the pandemic has been difficult, because I DO want to formulate meaningful relationships in college.
To students who are not on the autism spectrum, I would like to say that if you have a friend that shows possible signs of autism, if they are kind of unusual or seem annoying, or maybe attract a lot of attention in public, please don’t give up on them, because they have a lot of greatness to offer and can still be such a great friend to you. When you address them, do not blame them, but ask what they need and don’t just do what you think is right. Ask them what they need for themselves, because it's different for everyone.
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HEALTH AND WELLNESS
Dr. Francesca M. Maresca
Professor and Director of
Health Outreach, Promotion & Education
Rutgers Student Health
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Parents and students think about many things before the start of college - tuition, class schedules, majors, meal plans, and residence halls. Few people think about health and wellness resources on campus and how students benefit from these services. Health Outreach, Promotion & Education (HOPE), part of Rutgers Student Health, offers a diverse range of services that can help students be successful.
Over the past several years, HOPE has worked with the CSP in many ways. We facilitate Campus Connect Suicide Prevention Gatekeeping Training for the peer mentors annually. For several years, the CSP has been a guest in Principles of Health & Wellness classes, providing an overview of autism spectrum disorders and facilitating a panel discussion with CSP students. SHADES Theater Workshops for CSP students help create solutions to common issues in dating, relationships, and more.
The outreach that HOPE provides benefits all students in key areas such as mental health and suicide prevention, sexual and reproductive health, alcohol and other drug education, nutrition, and overall wellness. Peer education is the main way we work across the campus. Our peer educators provide interactive workshops and outreach in residence halls, student organizations, classrooms, and fraternities and sororities. They understand that in any of these environments, they may be working with students with ASD. Unless they are facilitating a program for the CSP, they don’t know if any students with ASD are participating. Peer education provides valuable tools and skills to students to make the best decisions related to their health and wellness. It is not a “don’t do this!” approach but instead, employs risk reduction skills to move students towards the best decision for them. Peer educators build skills in facilitation, content knowledge, group process, and leadership. Students with ASD might also be peer educators.
HOPE utilizes the seven dimensions of health model, incorporating physical, emotional, social, spiritual, financial, environmental, and academic wellness into all aspects of our work. Like all students, students with ASD are learning how to manage all that college offers from academics to social life with an added complexity. Students with ASD still need to know about stress, time management, mental health issues, alcohol and other drugs, nutrition, and sexual health. Having this knowledge and learning the skills needed to make the best decisions can lead to success both inside and outside the classroom.
HOPE is just one part of Rutgers Student Health. Other services include medical and mental health. To find out more about all of our services, go to the website, Rutgers Student Health. Here you will find information about services, making appointments, and all of our virtual resources. It does not matter if a student is living at home, on- or off-campus; all services are available to students.
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RESIDENTIAL LIFE
Kimberly Kosinski, EdM
Residential Care Coordinator for Accommodations and Special Populations
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For many students, living on campus is a hallmark of the college experience. While discovering their newfound independence, students can enjoy the excitement of community-style living and create memories with their peers that will last a lifetime; but living on campus also brings about many challenges. Homesickness, roommate conflicts, the awkwardness of communal bathrooms – these are trials that all residents will go through while living on campus.
For students with autism, we know that these everyday challenges can be heightened, so Residence Life is available to assist our students when they need us most. One of the challenges when working with students with autism is helping them balance their need for privacy, while also avoiding isolation. Many students request to live in a single room so that they have space to decompress after a long day of school, but living in a single room can also lead to isolation – students miss out on the experience of living with a roommate, and may find it challenging to attend social events with peers that they’ve never met before. And, students who choose to live with a roommate experience the challenges of sharing a space with someone who may not always be sensitive to their unique needs.
For Residence Life staff, our goal is to help students navigate these challenges and find solutions that will allow them to fully enjoy the on-campus experience. When it comes to meeting new people, we might connect the student with their Resident Assistant who can invite them to events and introduce them to their fellow residents. For roommate conflicts, we might coach students on how to articulate their needs so that both residents can develop a mutual understanding and respect for one another. Most importantly, as staff, we like to exercise patience. No two students are exactly alike, so this means taking the time to really get to know each resident with autism and empowering them to find the solution that works best for them and their needs.
The COVID-19 pandemic has brought about many changes to the way we support our students, but our goal of providing an engaging on-campus experience has remained the same. Residence Life has created various opportunities for students to connect and engage with one another through virtual programming and community-building. Staff members are also available for phone and video calls so that students can meet with us one-on-one, and we remain available to assist students after-hours, if needed. This pandemic has brought about feelings of isolation, uncertainty, and worry for our students, so maintaining that sense of community and support remains a top priority.
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“I choose to stay dependent because, if I don’t, bad things are going to happen.”
Tom Moore, MA, MDiv
Junior External Transfer Student Coordinator
Rutgers Business School - New Brunswick
Office of Undergraduate Programs
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This sentiment was recently conveyed to me by a 15-year-old high school sophomore on the autism spectrum when speaking about his resistance to becoming more self-sufficient and responsible in his decision-making. This choice was well-thought-out and conveyed a sense of anxiety and fear about growing up and moving toward independent living. When thinking about adolescents on the autism spectrum as they transition to adulthood, this statement could just as readily be applied to their parents who struggle to figure out how to help their children grow up. Parents often choose to remain dependent on making decisions for their child, removing their responsibility for their actions, and purposely prolonging the interdependent relationship they have with their son or daughter. Just as teens on the spectrum may be anxious and fearful of growing up, parents may also experience stress, anxiety and fear if they lose control over their children’s daily lives and decision-making, which in turn may cause bad things to happen.
Separation-individuation theory posits that, as adolescents age, they separate psychologically from their parents and experience a change in their identity. While most research focuses on the teen experience during the transition to adulthood, some studies report parental anxiety, sadness, anger and frustration as their teens move from interdependence to independence and separate from them (Bartle-Haring et al., 2002). Additional research indicates parents of young adults on the autism spectrum often have low expectations of their child’s transition to autonomous behavior, struggle to assist them in learning to be independent, and are uncertain, overprotective, have a need for control, and seek to set boundaries while staying connected (Van Hees et al., 2018). Parental supervision may be necessary as some adults with Autism Spectrum Disorder may be incapable of advocating for themselves, making proper decisions, taking responsibility for their actions, and successfully coping with the complexities of everyday life as an adult. If parents choose to relinquish or, at least, significantly diminish dependence on taking care of their adult child diagnosed with autism, will everything go wrong? And what if it does?
Here are some suggestions for parents:
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Listen to your child, to educators, to health care professionals.
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Ask questions - there is no standard playbook, as each individual and situation is unique.
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Seek to understand - work with others who have a similar goal, your child’s happiness.
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Follow your instincts - parents know their children better than anyone.
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Take care of yourself - find your own support systems.
Raising children is the most important job we, as parents, will ever have. It is not something we do; it is who we are. We will make mistakes, question ourselves, and often feel lost. However, choosing to remain dependent on keeping our children dependent is not the answer. Things may go wrong, but love, understanding, empathy and teamwork will prevail.
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PERSPECTIVES OF A PEER MENTOR
Tiffany Galvin
CSP Peer Mentor; Co-President,
CSP Peer Mentor Executive Board
Rutgers Undergraduate Student
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I first started working with the CSP my junior year, and I currently serve as Co-President of the Peer Mentor E-Board. This program has meant so much to me over that past two years. My younger brother is on the autism spectrum, which resulted in my working with Special Olympics for years, and it's what brought me to the CSP in college. What was new to me, was instead of working with younger students, working with students my own age. And, I will not lie, I like it so much better.
My interactions with the students are like that of peers and genuine friends. We talk about good movies we saw, crazy things we see happen on campus, and the pressures we face in college. From my experience, interacting with my students as friends first, mentees second, has allowed for a more productive relationship on both ends. I am learning more about working with this population and the struggles they face, which might not be the ones that first come to mind. The students are gaining advice and tips on how to navigate Rutgers from a student who has done it all before- a mutually beneficial friendship.
To support our students properly, we have to understand ourselves. What do the people in your life do daily to show they support you academically, mentally and socially? How do we support our siblings, friends and teammates to demonstrate that we care about their well-being? I think being a friend first is the best way to support them. Allowing time to build a bond between you and your student creates trust and not a “forced friendship” that some students may think they are getting. At this point, my student knows so much about my siblings and asks ME about them (and my dog) almost every week!
Being honest about things happening in your life opens the door for them being honest about things happening in their life. While we try to stick to a regular meeting schedule, I have, on multiple occasions, texted my student asking to cancel because I was extremely behind on homework. On the same note, I have had my student text me saying that they will fall asleep during our meeting if we meet and ask if we can do it later. Personally, sometimes I need support or reminders about assignments, or that the exam stressing me out will eventually be over. I pass this along to my students as well. If they tell me they might have missed a few assignments, I will ask if they use an agenda, because I use one and it helps me stay organized. Suggesting something like checking your emails or class websites each morning and writing down everything that needs to get done that day can be helpful, because it is something I have used before. Or, if they say that their girlfriend broke up with them, I tell them the best place to get cheap ice cream, because that is what I do when relationships end. Reminding them how great they are when they feel low is needed for anyone going through a hard time.
I try my best to insert positive affirmations when I can, because that is what my friends do for me. College is hard for everyone, and we all need support. Being a friend and giving them the support they need by using your own perspective of what you need grants room for trust and growth. This developing friendship allows for inside jokes, a safe space to talk, and, in my opinion, a better college experience for us both. Being there for our students makes CSP so effective and a great program to be a part of. Having mentors be friends first, mentees second, creates a bond that can mature into a lifelong friendship.
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Check out these reports from NASPA, Student Affairs Administrators in Higher Education:
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ACCOMMODATIONS MAKE A DIFFERENCE
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Carlie Andrews
Senior Director
Rutgers - Office of Disability Services (ODS)
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College is an exciting time filled with lots of new and novel experiences. It can also be an overwhelming time, as parents and students work to navigate all of the new resources and support available at their school. One such support, the Office of Disability Services, can be an important resource to explore.
The primary role of the ODS is to work with students to determine what academic accommodations are needed to ensure equal access to the learning environment. Some common accommodations may include:
- extended time on tests
- a reduced distraction testing location
- textbooks in an alternative format
- ...and more!
When a student first registers with ODS, they are paired with a coordinator who will be their partner and guide on this collegiate journey. The support and services provided are individualized for each student depending on their unique needs.
Rutgers-ODS also partners closely with other campus resources such as Residence Life, the Dean of Students, The Learning Centers, and more to ensure that students are aware of how to connect with these services.
One important note about working with ODS is disclosure. In the higher education environment, a student must be the one to initiate contact (disclose) to our office that they have a disability and may need accommodations. In turn, ODS will not disclose (without the student’s permission) anything about their disability to others. What a student shares with ODS is confidential and will not be told to others without a student’s permission. It will also not appear in shared databases or on a student’s transcript.
Even during this unique time of online learning and COVID, the ODS remains committed to providing the same high level of service and support you would expect in-person. We are meeting with students over the phone or by video chat, have a robust amount of information available on our website, and have started a new instant chat service that allows students, parents, faculty, or other members of the community to connect with us instantly.
If you have any questions, or would like further information, please visit our website. We look forward to working with you!
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CITED SOURCES FROM TOM MOORE'S ARTICLE:
Bartle-Haring, S., Brucker, P., & Hock, E. (2002). The impact of parental separation anxiety on identity development in late adolescence and early adulthood. Journal of Adolescent Research, 17(5), 439-450.
Van Hees, V., Roeyers, H., & De Mol, J. (2018). Students with autism spectrum disorder and their parents in the transition into higher education: Impact on dynamics in the parent–child relationship. Journal of Autism and Developmental Disorders,
1-15.
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Everyone deserves a place in the world! The groundbreaking report, A Place in the World, has officially launched, and we're so excited to share it with the public! It sheds light on a number of issues such as housing, that neurodiverse adults and their caretakers face. This remarkable report provides evidence-based practices for tackling these matters.
RCAAS' very own Executive Director, Dr. Christopher Manente, lent his expertise to this initiative and was proud to be a part of this transformative project. Learn more here and help raise the bar for a new generation of options, so that adults with ASD no longer have their diagnosis stand in the way of jobs, supportive communities, or owning a home.
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Recently, Dr. Manente sat down with the hosts of RU's Institutional Planning and Operations' Rutgers IP&O from Home. The episode raises awareness about our new building center, the value adults on the autism spectrum add to society, our mission to advocate for and seek to improve their quality of life, how we are positively impacting the Rutgers community as a whole and more! Watch the interview!

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"Although the world is full of suffering, it is also full of the overcoming of it."
-Helen Keller

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NEWSLETTER TEAM

Dr. James Maraventano,
Editor-in-Chief
Rugved Deshpande,
Circulation Manager
Kim Spinelli,
Senior Copy Editor
Courtney Butler,
Guest Editor
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