New Survey Provides Valuable Insight for College-Bound ASD Students

While the news is filled with articles about autistic children, these children are quietly growing into teens and young adults. Many want to go to college.

But college is a lot more than just going to class and getting the work done.

Survey Provides Insight for College Bound ASD Students

In an effort to help autistic teens prepare for college, sponsored a survey sent to autistic college students across the United States in June of 2015.

Fifty-seven autistic college students responded with answers to six questions. Many of the responses received provided excellent insight into what autistic college-bound students and their families can expect and perhaps offer an opportunity to plan ahead. Here are some of the responses:

  1. What supports do you receive in college and how does it compare to high school?
    Surprisingly most respondents didn’t have any support in high school.
  2. “I’ve learned there is a distinction between ‘supports,’ which I am responsible to figure out, and accommodations which are a legal right in college.”
  3. “I realized my grades would really suffer if I didn’t take advantage of the accommodations I was legally entitled to. The accommodations I get include double time on tests, consideration of excess absences, the ability to record lectures, the ability to type rather than handwrite in-class assignments, and the ability to leave the classroom if I get to anxious.”
  4. “College is surprisingly supportive if you are willing to look. There are so many resources and tutoring options that many people just aren’t aware of.”
  5. “Option to use note taker services, but it is hard to find volunteers to do it.”
  6. “In college I used accommodations including extra feedback from instructors, accessible formats in materials, breaks as needed to manage health and sensory needs and permission to use self management strategies such as stimming and sensory support tools.”
  7. “I managed to get a study support assistant from the National Autistic Society.”
  8. “I don’t receive any supports, though some of my teachers are lenient when I tell them about my condition.”
  9. “I used to get process tutoring (basically someone to check in on me and help me with executive functioning) from my college but they laid her off so my mom pays her privately to visit with me now.”
  10. “Permission to type my work instead of hand write it.”
  11. “Nothing yet, but I have options if I ask for them.”

It is clear from the responses received that utilizing available supports and accommodations are important to the success of students. Different colleges provide different levels of support and accommodations. It is important to understand what each student needs for support and check with colleges being considered. There may also be local services available that are unrelated to the college, but can provide the additional support needed.

  1. Where do you live and why?
    Respondents seemed to be evenly distributed between dorms, apartments and at home with family.
  2. “Home, it’s cheaper to live at and commute, and it also gives me the comfort of a stable environment.”
  3. “Dorm, because I like being in a community.”
  4. “A studio apartment because it is much cheaper that living in the dorms and because I can stay there for the remainder of my college education without having to move every year.”
  5. “I tried staying in a dorm. It didn’t work well. My next attempt at college is going to be from home because I have family here who can help me construct the structure that I need.”
  6. During undergrad, I lived on campus, within walking distance of everything I needed to be able to get to (classes, gym, etc). This was by far the best living arrangement I’ve ever had – having a meal plan and dining halls I could walk to easily alleviated the single biggest executive functioning problem I have.”
  7. “I lived in a dorm on campus during undergrad and later on campus apartment during graduate school. Cost was the most important factor.”
  8. “Home, aside from the practical reasons, I can be my real self and charge my ‘social battery.'”
  9. “Home. I couldn’t cope with planning life at the same time. Home is safe.
  10. “I live in an apartment with a very close friend. I have my own room here.”
  11. “I lived in a dorm my first year with my own private bedroom and a living space and bathroom shared with 3 other girls. That worked fine for me. Then, I lived in an apartment with a roommate because I wanted more private space. I recommend living at home. The change in environment each year was really stressful for me.”

When choosing the ‘best’ living arrangement it is important to think about things like executive functions skills, shared spaces and social engagement. It is also important to understand how much control the student will have over their environment. A dorm where they must share a single room with one or more people may be too difficult, but a dorm where they have a bedroom and some shared spaces may be fine. A single dorm room by themselves may lead to isolation. In college where they live is much more than just where they sleep.

Consider what kinds of living experiences they have had in the past. How do they do on vacation sharing a hotel room? Have they ever traveled with peers or gone to summer camp? Understanding what skills they have now and finding a living space that allows them to have a safe space will help them be successful in college.

  1. How do you keep track of classes and assignments?
    Paper planners and Google Calendar were the most common choices.
  2. “Google calendar, tons of post-its, exchanging email with the teachers.”
  3. “I always print off my schedule in the beginning of the year and check it often.”
  4. “I write down deadlines, meetings, etc. in a planner.”
  5. “I used a paper planner until grad school.”
  6. “I have a big dry erase calendar on my house where I keep my class work and schedule.”
  7. “A planner book and remember to keep track of what time it is.”
  8. “I keep a daily planner. Some professors email their students about class times and projects due.”
  9. “Google Calendar on my phone.”
  10. “Whiteboard with assignments, calendar with deadlines and events.”
  11. “Sticky notes, sticky notes everywhere.”

Executive functions like organization and prioritization are often a struggle for autistic students. Consider using the same method of organization that worked in high school. Check into how the college tracks assignments. Talk to the school to see if there are any support programs specific to these skills. Autistic students are not the only ones who struggle with organization and prioritization as freshman in college so many schools have workshops or other programs for incoming students.

  1. How do you handle stress?
    The most common statement was some variation of, “I don’t.”
  2. “Tons of stimming. I have sound-muffling headphones that I keep in my bag with me constantly.”
  3. “This is a skill I have developed with age and with finding a therapist who was willing to focus on my need for coping tools.”
  4. “Spending time alone in low sensory environments, especially nature.”
  5. “Depends on the type of stress and the situation.”
  6. “The right sensory input helps a lot. For me getting to listen to music I like, with headphones, and deep pressure work the best.”
  7. “I can cope well so long as I get some alone time, and exercise, fresh air and occasionally music are all helpful.”
  8. “Kitties, music, deep pressure.”
  9. “This is a skill I’ve developed with age and with finding a therapist who was willing to focus on my need for coping tools.”
  10. “Video games and reading.”
  11. “Music. I joined Acapella and singing really acts as a stress relief. I also bike a lot.”

Managing stress can be the single most important skill for autistic students to master. Students who are stressed can spiral into depression, lose focus, or shut down. The most successful students know how to identify the feeling of stress in themselves and have created a place they can go to decompress. Students who have a plan and know what has worked for them in the past are more likely to manage the new demands of college.

It is also important to check into counseling services that may be available on campus. Some coping methods may no longer work in college or the stress may be much higher than expected. Students who are willing to ask for help are more likely to succeed.

  1. How do you motivate yourself?
    Self motivation was another area where students openly talked about struggling.
  2. “By thinking that I am worth living like any other person and that I can obtain a degree despite hardships.”
  3. “I motivate myself by controlling my environment and planning daily time for intense exercise and nature.”
  4. “Scheduling everything (Including food, exercise and sleep) in my google Calendar with reminders helps, as does having people around me to remind me to leave my room on occasion.”
  5. “By using strong interests when possible in assignments and class choice.”
  6. “Through a valuing of learning, the interest I have in the subject and the excitement of the long term goals I am advancing.”
  7. “Ration Internet time.”
  8. “By knowing what will happen if I’m not motivated and because I am a people pleaser who is afraid of failure.”
  9. “I reward myself with something I like to do if I get a certain amount of work done”
  10. “I have a government loan. If I drop out I have to start to pay. I remind myself of that.”
  11. “Sometimes I give myself rewards when I’m productive, like having a special food I really like if I get most of the things done I wanted to do that day. I have to remember that it’s OK not to get everything done.”

Motivation is unique to each individual. For many students self-motivation is all about doing work in classes they don’t want to take or don’t have an interest in. It is important to choose as many classes as possible where the subject is interesting. For students who are still in high school and know they are not interested in a specific subject they can try to ‘test out’ of that subject through CLEP tests. Knowing that passing a test will keep you from having to take two years of a subject you hate may be enough motivation to study hard for the test.

It is also important for students to find a tribe that is supportive. Family can be essential in promoting self-worth and keeping students focused on the goal.

  1. If you could go back in time and give a piece of advice to your high school self, what would it be?
  2. “I would tell myself to be more assertive.”
  3. “For the love of God, stop worrying what others will think and ask for help if you need it.”
  4. “No one else feels as agitated by the things that bother you as you do, so you need to tell people when it happens, because they have no idea it’s happening otherwise.”
  5. “Hang in there kid. Things will be rough for awhile, but you’ll become tougher. Everything will be okay. Nothing is forever.”
  6. “Don’t be afraid to use the skills you do have (typing) to communicate your needs to adults – they love you and they will help you, whatever it takes.
  7. “You’re not stupid, you’ve actually got autism and dyslexia to go get tested and get some help.”
  8. “Try harder to get supports, also make sure you’re eating!! Oh, and animation is way better than computer science.”
  9. “You’re not a freak. You don’t have ADD, You’re autistic and you’re not broken.”
  10. “Start earlier in working on overcoming social anxiety.”
  11. “Seek help now, don’t wait ’til college.”

Experiences vary widely depending on each situation, but listening to those who have lived the experience is one way to get learn what may work best for you.

This article was featured in Issue 44 – Strategies for Daily Life with Autism

Dawn Marcotte

Dawn Marcotte created to help autistic teens go to college. It provides a searchable database of over 300 colleges with autism support programs and advice from autistic college students.