By Julie Coulter
My husband and I began a new phase in life last fall as our son left home to attend college. After struggling with ADD and Asperger Syndrome through special education programs in a mainstream environment for 13 years, he had graduated from high school successfully. We are proud of his hard work and the steps he took to get to college. We are very grateful to all the teachers who helped our son prepare for college in high school. We are also very thankful for college programs for students with special needs.
Students and parents have many decisions to make as they evaluate college programs. We visited several colleges and our son applied to four schools. He chose to attend a small liberal arts college with special services programs and without traditional fraternity and sorority life and to live on campus.
Many students have had a hard time socially in high school and are ready for a change and to make a fresh start. Parents can help the student to approach these changes with a positive attitude and outlook. Parents can also help the student start off the new experience on the “right foot” by assisting the student to plan and organize their new life on campus. Our son was looking forward to this change and to exercise his independence from us. We have to keep reminding ourselves that our children need to learn to function independently. Many parents struggle with giving up control of their student’s day-to-day activities and encouraging independence. After our son’s first week at college and he told me to “Go get a job! Go make a quilt!” I realized quickly that I had been “fired” and had a new role to play.
First semester Preparation-Living on Campus
When students decide to live on campus, they have to decide whether to have a roommate or request a single room. Our son decided to have a roommate in spite of the recommendation from the high school child study team for a single room. He completed the survey sent by the college to determine his likes and dislikes, sleep habits, whether he is messy or neat, and musical taste. He also had to indicate the type of dorm he preferred: single sex or co-ed, smoking or non-smoking, alcohol free or alcohol allowed (for those over age 21). Using those preferences, the college staff happened to assign our son a roommate who also has Asperger Syndrome. After he had been in school for a few weeks, I asked, “How’s your roommate doing?” He replied, “I don’t know! We’re two guys with Asperger’s, Mom - we don’t talk!” Students may need some guidance in interpersonal relationships to help them get along in the dorm. Our son had an experience with another student, who also has Asperger Syndrome, who began to hang out in another student’s room to play a particular computer game. The student with Asperger Syndrome did not understand when he had become a nuisance to the other student who did not want to have constant visitors in his room. Our son learned to put on his headphones when his neighbors blasted music he did not want to hear.
Dorm Room Organization
If the student will live on campus and struggles with organization, parents may need to help the student in arranging their dorm room before leaving the campus. Students need to limit the amount of “stuff” that they take to the dorm! Many students can use the campus computer labs rather than having a computer in their room. We visited several colleges that provided computers to students as a part of their tuition fee.
We found that our son’s dorm room was small, the desk did not easily accommodate a computer and printer, and we quickly filled the available closet and storage areas. We made many trips to stores and a lumberyard to buy organizing bins, stacking shelves, and wood. We added sections of wood to raise the bed up (the purchased bed risers didn’t fit the bed) and placed bins under the bed for books. We added wood to the desk to build surfaces with different heights to accommodate the computer and printer and still leave a space for writing. We had not thought to take tools with us so we recommend carrying your toolbox along! We admired the handiwork of two students who had built loft frames and hoisted their beds up on the frames and put their desks under the beds. We bought laundry hampers, detergent, small ironing board and iron. Later, our son found out that irons were not allowed in the dorm. If the student will have to use a hall bathroom, they will need a caddy to carry personal grooming items back and forth between their room and the bathroom. We also bought closet organizers to make the best use of the small closet space.
We organized a binder for our son to keep important information such as medical information, insurance forms, important addresses and phone numbers, pre-printed mail labels for family members and postage stamps, bank account records, a “to do” list and calendar listing of family birthdays.
Students, Counselors, and Self-Advocacy
A thoughtful college counselor recently reminded me that unlike high school, colleges have to “provide access, not success”. I think this difference between high school and college is important for students to understand. Transition programs in high school vary tremendously and many students with special needs have not learned to advocate for themselves. Many students have depended upon parents for all interaction between school staff and are not experienced in discussing the accommodations they need in the classroom. The students must learn to advocate for themselves, by practicing explaining their special needs and their classroom accommodations, as they will have to communicate with new professors every semester.
The college counselors and advisors may recognize the level of the student’s self-advocacy skills as they interview the student. Both college counselors and academic advisors can assist students by providing written documentation of “things to do” to reinforce the responsibility of the student in assuring their needs for accommodations are met in the classroom. Talking with counselors and professors will also assist the student get ready for the workplace and learn when and how to discuss Asperger Syndrome with future employers.
Many students with Asperger Syndrome go to college carrying their ” baggage” of primary and secondary school experiences, which has shaped their attitude and their view of the world. They may have struggled academically and socially. If they experienced teasing, they may be wary of other students and reluctant to seek help if they encounter problems. The disability services staff can help students with Asperger Syndrome by establishing anti-hazing guidelines on campus and giving students a list of people to contact and a place to go for help if hazing occurs. Our son received several crank phone calls, which he reported to the dorm’s Resident Director. The Resident Director held a dorm meeting and advised everyone that students who participated in this type of behavior could be expelled from school. College counselors and parents can encourage students to seek out counseling if needed.
Parents and students need to discuss how to manage the student’s medication while they are in college. The students will need to know how to maintain their medication supply and may have to find a new physician if they are away from home. Changes in medication may not be a good idea for first semester - as we discovered the hard way! Parents should make sure that the student knows how to access student health services on campus.
Preparing College Staff
The student and parents need to find out if the teaching staff of the college has knowledge of Asperger Syndrome, either during the application process or upon acceptance and determination to attend a specific school. At our son’s school, Dorothy Wells, the Director of Disability Services, provided a binder of teaching tips to professors for all disabilities represented by the student population and she wrote a new section to cover Asperger Syndrome. If needed, the student can provide documentation or resources to the college staff on Asperger Syndrome and Autism Spectrum Disorders. Ms. Wells also conducted an in-service for staff, including residential dorm personnel, to review the needs of students with Asperger Syndrome and suggested ways of handling potential problems in the classrooms and dorms. If the college has part-time or adjunct professors, the disability services staff may have a harder time getting the information to all personnel.
Disability Services and Academic Advisors
Usually, colleges have a separate process for students to apply for disability services. Colleges may request a copy of the high school IEP but depend more upon educational and psychological testing results to determine a student’s eligibility for services. Colleges need to see recent test data, preferably completed during the student’s senior year.
During high school, the family depended upon the case manager to communicate classroom accommodations for students with the teaching staff. In college, the student has to take over the communication part of that role. The college disability services personnel need to explain the “Letter of Accommodation” process to students. These letters go to professors to detail the classroom accommodations for which the student has demonstrated a need as determined by the disability services staff based on the educational and psychological testing data. The student must take their classroom schedule to the disability services director who will then prepare the “Letter of Accommodation” for professors. The student is responsible for providing the letter to each of their professors. Students need to learn that they must provide the information to the professor about their disability and their need for accommodations in the classroom. Some students prefer to provide information about their strengths and challenges to their professors in writing. The students are responsible for repeating this process during every semester’s registration process.
The students also need a clear understanding of the type disability services provided by the college. Some programs require mandatory attendance by the student and cost an additional amount based on the services provided. Some colleges provide the services to all students who have demonstrated the need for accommodation at no extra charge. If the student has demonstrated a need for special assistance such as a note-taker, then they must provide a copy of their schedule to the disability services staff so that the college can arrange to provide that service. At our son’s school, if a student who has a note-taker decides to cut class, the note-taker leaves the class after waiting 15 minutes. Having a note-taker doesn’t give them a free ride! Students will need to locate academic resource centers and obtain a written explanation of the type of services available for students. Our son resisted seeking help from the resource center in spite of our weekly pleas for him to get help. He did not understand the meaning of academic resource center and thought that “academic resource center” meant psychological counseling so he refused to go for help. He also was tired of “special ed” and just wanted to be a regular student.
As many students with Asperger Syndrome have problems with change and transitions, college staff can assist these students when they arrive on campus by providing clear written information prior to their arrival so that they have the opportunity to read and study the information with their family before arriving on campus. This packet should include: schedules of orientation programs, maps of campus, directions for checking into dorms, explanation of the class registration process, outlining the academic advisor role, and course selection. The college should invite students to meet the disability services personnel during the orientation to campus. The students need a clear understanding of the registration process and alternatives to take if they cannot get into the classes they originally chose. During orientation for parents, the college staff will need to explain to parents and students the FERPA law and the waiver which students can sign which will allow college staff to talk to parents about their student, if needed. The college can also provide contact information for school staff to the parents.
During our son’s freshman orientation, the staff used the vehicle of a scavenger hunt game to help the students locate the buildings on campus, which only encouraged the students to run around quickly to finish the scavenger hunt rather than actually learning what happened in each building. We suggest a tour of the academic resource center and a written guide to explain the services available to students including special software, computer programs, and tutoring. The students with Asperger Syndrome may not ask questions or seek help.
Students need help in understanding the academic course selection and advising process. We spent a lot of energy and time dealing with so many non-academic issues that we did not spend enough time preparing our son for the choice of academic courses. We helped him create a basic plan, which had to change when he registered. Advisors will assist the students in choosing academic courses and how to develop a 2 or 4-year plan for their academic program. The student needs to ask their advisor what to do in case a course needs changing and the calendar deadline for those changes. Taking a lighter class load may help the student adjust to college life. As we visited colleges, we found that many regular education students take longer than four years to complete their degree programs. The special needs student who takes a lighter class load may need to attend college for more than eight semesters. Students also need to learn how to calculate Grade Point Average and the expected Grade Point Average needed for graduation.
The student may need to meet with the disability services staff after the first month of school to check on their status and adjustment to college life and their ability to communicate with school staff. The disability services staff and the academic advisor cannot require the student to visit them-they can only ask them to come!
Communication with Students
Every student will need to communicate with the college staff and their families on a regular basis and will need to understand how to use the telephone system, Internet connection, and mail services on campus. Students need to learn how their college staff will provide information to them. As many colleges today use email and Internet for most of their communication, students need to learn to check their campus email on a regular basis. Many professors use email to notify students of changes in course work or test schedules. Some students, like our son, who was not used to using email regularly, may need a reminder to answer their mother’s email!
Campus Social Life
Students with Asperger Syndrome may need extra help in locating extra-curricular activities on campus. Both parents and disability services staff may need to get involved to make sure that the student has connected to a group of friends and provide suggestions if needed. We know of several colleges, which provide a peer advisor or “Big Sister” program, to assist all freshmen students adjust to college life by designating a student from an upper class to guide them.
The unemployment level among adults with Asperger Syndrome is high. My husband and I feel that students need encouragement to seek assistance from the college career center. These students need help in exploring the work world either through a job on campus or internship off campus. The disability services staff can recommend that students meet the career counselor on campus. The career center can help students find summer employment in their field of interest as well as jobs after graduation.
Our son was ready to declare his independence more than I realized. He has thoroughly enjoyed being on his own. The first year is almost over and our son told me yesterday he had made plans for next year to room with his new friend and already purchased his dorm contract. He wants a co-ed dorm next year because he’s “tired of immature guy stuff”! I think he’s doing fine!
March 25, 2003
Revised July 5, 2006
ABOUT THE AUTHOR: Julie Coulter and her husband, Dan, produce videos that support people with Asperger Syndrome and autism. You can find more articles on their website at:www.coultervideo.com.
Copyright Coulter Video 2003 All Rights Reserved Used by Permission