When a student with AS goes off to college, it can be a huge challenge for the parent as well. Below, one student and her mother share with us their differing experiences of her freshman year.
Notes by Brianna Minks, College Student
When I first went into college, I signed up for my school’s disabled student services. My mother and I both believed that they would be a very useful resource, but disabled student services did not turn out to be very useful. They did not seem to understand what my needs were. For example, they believed that I needed to make friends, and they even set up meetings between me and another student with Asperger’s a few months after I started college. While I do like having friends, I would have preferred to concentrate on settling in to my new environment at the time. The fact that they wanted to make friends for me made me feel very uncomfortable, almost like they didn’t believe I could find friends on my own. Not only did they provide services that I did not need, but they also were not helpful when I needed them to be. I am not able to advocate for myself when I am feeling overwhelmed, and need someone to advocate for me. When my mother called them on my behalf, they refused to help. They believed that I should come to them on my own.
Although disabled student services did not offer much help, I was able to find support outside of the university. I went to an Occupational Therapist for a year and a half. Going to OT allowed me to manage my sensory issues, which in turn gave me the energy I needed to focus on other problems. I also found a life coach, Marie, who helps me to deal with various Asperger’s related problems. She has been teaching me how to recognize social cues, and is also helping me to get over my fear of certain things, such as using the telephone.
With the encouragement of my family and Marie, I was able to enjoy my time at college more. During the second semester of my first year I made a good friend who is very understanding about my Asperger’s. I am also the secretary of my school’s film club. I have managed to maintain a 3.0 average, and I am on the Dean’s list. There are still times when I feel like I am unable to do anything, but overall I am glad that I am going to college.
Notes by Gina M. Minks, Brianna’s Mother
My daughter Brianna is a junior in college this fall. She likes movies, crafting, music, manga, and comics. She was diagnosed with Asperger Syndrome the summer before she went away to college. She is very bright, and got into all five colleges to which she applied. We knew that she would do fine academically, but were very worried about how she would adjust socially, and whether she would be able to take care of herself.
The college she chose to attend is about two and a half hours away from our home. It is a big state college with about 11,000 undergrads. Since the university has a Center for Autism and Related Disabilities, we had hoped there would be support available from the university for my daughter. Brianna also won an academic scholarship that requires her to carry 15 credits a semester and maintain a 3.0 GPA, so she started out with a good amount of academic pressure.
The first semester was awful. Brianna couldn’t figure out how to navigate the social aspects of college. I was quickly rebuked by the Director of the Disabled Student Services Department for trying to step in and advocate for my daughter. By the end of the semester, Brianna was placed on academic probation, and we had to really fight to convince her to go back for the spring semester.
There is a happy ending, however. Because of Brianna’s hard work to understand the college social scene, along with the help of some professionals who are training her, she is now doing great in school. She earned a 3.7 GPA last semester, and made the Dean’s list. She is working with a group of students to start a film club, and she is even the secretary of that group. It is now easy to see her reaching her goal of becoming a film archivist, and completely supporting herself. I am very proud of how well she is doing.
There are definitely things we should have done differently to make Brianna’s transition to college a little easier. Maybe this list can help other families sending their kids off to college.
Have your student enroll with the Student Disabilities Office. They are key to getting accommodations such as:
- Testing accommodations (e.g. extra time).
- Note takers—although this could be hard to get.
- Single rooming assignments based on medical grounds.
- Early sign-up for housing and for classes.
However—don’t expect the Disabilities Office to communicate with you, the parent. In our experience, they would only communicate with my daughter, and she had to initiate the communication. Since she doesn’t understand how to start these conversations, any services offered by that department were very difficult for her to obtain.
Don’t expect the Disabilities Office to understand the needs of a student with AS. In my daughter’s case, not only did they not understand how difficult it was for her to communicate with their office on her own, but they also scheduled lunch dates for her with other students with AS. These dates happened without a neurotypical person there to help them with conversation skills, and only served to further erode my daughter’s respect for the disabilities office.
Find a skills coach for your child in the college town. Brianna meets once a week with someone who has helped her become even more independent. It is good for students to have someone in their college town to lean on for support. I think it helped Brianna to get advice from someone who is not blinded with parental love and concern. Sometimes we as parents may hold our kids back, when they are ready to fly.
Make sure your child is registered with the Rehabilitation Commission in your home state. They can help advocate for your child. Disability departments may listen more to someone who has a client relationship with a student, as opposed to a parent. Mass Rehab also helped Brianna get an internship at the National Archives this summer, which is in line with her career aspirations.
Buy your student a cell phone. Brianna calls me if she gets lost, if she gets nervous and wants to go over a “script” with me, and if she just needs reassurance before doing something new. We also keep in touch by Instant Messenger and email.
Encourage your student to take an organization or study skills course. The Disabilities Office may offer one. This course give students good ideas on how to organize their time. This course helped Brianna get on track in that first semester.
Teach your students skills they will need to survive on their own. Be sure they can do laundry, figure out schedules for public transportation, clean their room, clean up after themselves (showers, common rooms), get prescriptions filled, manage a bank account, etc. We saw college as a way to test the waters for independent living, while at the same time earning a degree to support independent living.
Take everything said at freshman orientation with a grain of salt. For instance, we were told not to call our student every day. Brianna calls me as part of her daily routine, and that call calms us both down.
Go early and walk the campus. Make sure your child is comfortable finding important places such as the library, food services, and all of their classes. This will be helpful if your child calls you mid-panic attack when s/he is lost, because you will have been there. Also, help the student figure out the campus buses, as well as the city buses. Find the university’s map on their webpage, and bookmark it.
Editor’s note: For occupational therapy for adults with AS, look on our web site for Elaine Hill’s article from the fall 2005 issue of the AANE News. Social coach Marie Hicks, formerly Marie Martinelli, was a graduate intern at AANE in 2001-02. She helped launch the AANE Western Mass Chapter. She has since founded an ASA Chapter in Albany, NY. See www.albanyautism.org.