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Parent Perspective: Autism, Independence, Safety, and Campus Choice

The transition from high school to college is challenging for even the most well-established student. The ASD student faces a myriad of hurdles which are unique, and the parents of children with ASD must prepare accordingly. Stressors can include: change in routine, location, and expectations. Furthermore, the biggest challenge for families may be the balance between guaranteeing the student’s safety while encouraging their independence.

Just as any student may worry, the ASD student becomes anxious about the details of college life. Will I get financial aid? Should I take loans? What if I don’t get the classes I want? All valid worries; however, frequently the student becomes anxious about interacting with staff and students, especially if they usually have an aid or parent with them. Discussing the transition with a young woman with ASD, I was not surprised to note that her biggest fears were the same fears that my son, who also has ASD, had when he began college: could she handle the course load and most importantly, would her mom follow her around campus and “nerd her out”?

Mary

Mary* wants to be independent but likes the security of having her mother close by her. Mary stated that she struggled with trusting peers, especially those who were neurotypical. Her last fear was neurotypical students would not understand her and would therefore isolate her. She is currently in a program through Northern Rhode Island Collaborative, which partners with Community College Rhode Island for a transition program. This program teaches life skills, travel skills, and transition prep skills. The program is geared to smooth the transition to community college. However, a teacher or aid is with the student in class. This alleviates many of the anxieties that are likely to reassert themselves when Mary actually begins classes.

Ann

Mary’s mother Ann* has different fears. She fears Mary may be easily taken advantage of because she is very trusting of adults. For example, she would unquestioningly follow someone with a badge. She has been known to wander, especially if she is overwhelmed. This is a fear with which most ASD parents contend. We want our children to succeed in school and to be successful in life. For most of us, we have spent significant time since diagnosis, fighting the limits of the system, the medical community, and others’ expectations to give our children the best chance at having an independent and full life. While our child was in elementary, middle, and high school, there was always us, an aid, or teacher to make sure they were not misled, discounted, or harmed in some way. We worried about the bullying and standardized testing but were assured our child would be moving safely door to door. Then comes college.

I am a big proponent of compromise and adapt. When my son was looking forward to college, we became interested in Bristol Community College in Fall River, Massachusetts. Our plan started well before graduation. Having heard about a dual enrollment program, I did my homework and discovered he could take a class a semester. This is free to students who qualify. Around his sophomore year of high school, he began taking one class at a time. I took him and sat outside the classroom. My goal was two-fold: I could observe the atmosphere and see if it was supportive and I could observe the workload. This would enable me to have insights into our conversations about whether the level of classes or the environment was too challenging for him.

My son and I chose BCC for two reasons. First, the campus is an enclosed quad. It is bordered on all four sides by buildings and in the middle stands a library. There are no streets for him to cross, no cars for him to avoid, and the buildings are well marked. The second reason is the disability program. BCC prides itself on its diverse, inclusive, and supportive community. The staff worked with my son and me to ensure the best of both safety and independence.

After ensuring he could handle the work, my son proceeded to take one class a semester until graduation. He was now familiar with many of the staff, the set-up of the campus, and the expectations of his parents. I stayed on campus, usually in the library, and we stayed in touch by text. This allowed him the ability to have the college experience while knowing I was within walking distance should he need support. We both attained our stated goals by compromising and leaving room to adapt as needed.

Community colleges, such as Bristol Community College, often have programs which encourage independence while strengthening the safety of the college atmosphere. Community Autism Resources has a community college program geared towards this issue. The Gottschall program allows guardians and parents to send their children to college and uses the Community Autism Resources. In discussing this program with one of the staff, I learned that the students walk from class to class with a cohort. A peer within the program is always with another cohort, but the class usually travels together. This balances the independent student growth with the parent’s requirement for safety.

There is no one easy answer for how to balance the independence of the ASD student with the safety we demand as parents. Research about programs for ASD students must be done and, in my opinion, must start several years before the student prepares to leave high school. I would also recommend both parents and students tour the school regularly. Go to the school and sit in on classes together. This gives both the student and parent a picture of what the teachers are like, how students are treated, and what to expect. The added bonus will be the familiarity and comfort your child will have when he is on campus full time. Currently, there is a dearth of programs for college-age ASD students, but colleges are beginning to see the light. With vigilance from the ASD community and the support of the college community, higher education is available and attainable so that all children can reach their potential.

Do you have questions for me about this process? Please let me know in the comments.

*Names have been changed for privacy.

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Contributor Maureen Perkins is a 48-year-old mother of five. In 1995 her son Daniel was born and at the age of eighteen months, he was diagnosed with Autism Spectrum Disorder. With this shift in every day life, Maureen and her husband decided in 1995 that she should quit her job at the state auditor’s office to be Daniel’s full-time aid and advocate. Through a great deal of research, travel, and legal battles, she was able to give Daniel the tools to graduate with honors and begin a career in his chosen field.

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