By Susan J. Moreno
A Personal Experience
Guiding any offspring through the college selection process is a difficult and sensitive process. Some children, whether neuro-typical or differently-abled, know from an early age the college they want to attend. Others may not know which school they want to attend, but they do know what they want to study. We try to help our offspring discover their options and then a choice is made. There is no guarantee for any individual that the college they choose or perhaps the college that chooses them will be one at which they have a positive experience. However, the probability for success is greater when careful planning is done.
In the case of exceptional children who have the potential to attend college, many factors must be considered as we, their parents and trusted mentors, try to assist them in college selection. When the picture is further complicated by the college-bound person having autism, Asperger Syndrome (AS) or PDD/NOS, special considerations must take place.
To my knowledge, even those colleges with excellent adjunct programs designed to train teachers and other professionals, or to inform the public concerning autism and/or AS do not have a college program appropriately designed to support students with autism who attend their institutions. Most of these advanced individuals whom I know that have attended college went without the help of such a program.
The problem with services currently available for differently-abled people that already exist at many colleges is that they are geared either for people who are physically disabled or for people with learning disabilities. The programs that are designed for people with learning disabilities provide help with academic or social problems only when the person with the disability approaches them and asks for help. Most of our loved ones with autism or AS (Asperger Syndrome) don’t know that they need help in a subject or situation until things are at a crisis. Even at the time of a crisis some either won’t or can’t get themselves to a counselor to get the help they need. For those whose academic needs are met, appropriate social support systems do not exist. Therefore, most families I have known who have tried to use a learning disabilities program for a person with Asperger’s or autism have had poor results.
In our family’s case, we chose a college for our daughter using four basic criteria: (1) which colleges would accept her (despite her excellent intelligence, she had done badly on the SAT’s); (2) size of the college; (3) proximity to our home; and (4) attitude of admissions and guidance counselors. Our two best choices were a large state university located about 3 and ½ hours from our home and a small private college located about 40 minutes from our home. I knew the director of a resource center on autism, which was affiliated with the large state university. She had said she would try to help us with admissions and setting up some support there. Although the size of the university was somewhat intimidating (35,000 students), it would offer her a vast array of course options.
Our daughter is very talented in learning foreign languages, so we thought she could major in foreign languages there. However, we were concerned for her safety in navigating such a huge campus. The admissions person we dealt with seemed very helpful and willing to try to set up some special services. Our greatest concern other than transportation problems was that Beth might be placed in their learning disabilities program instead of designing a special program to meet her needs.
The private college was very small (only 900 students). Although they had no foreign language major there and only offered three languages, we thought that our daughter could major in music (another one of her excellent talents) and minor in foreign language. The campus was easy for her to navigate and we felt that it would be easier to set up a peer support system for her there. We were treated in a friendly and open manner by their admissions and guidance people. To their knowledge, they had never educated a person with autism or AS before. We felt this was a distinct advantage, as they would have few preconceived notions about her challenges. They were willing to learn about her special needs, but had some concerns about whether she would make it academically in all of the liberal arts courses required for graduation. However, if she couldn’t make grades in all of the required courses, they would give her an associate’s degree instead of a bachelor’s. I am happy to report that she DID pass all required courses and graduated in four years with a Bachelor of Arts degree in Applied Music.
We are very proud of her accomplishments, but to say that it wasn’t easy is a great understatement! I spent countless hours explaining our daughter and her needs to administration, teachers and peers. Setting up and maintaining a list of social and academic peer tutors was a constant drain on time, finances and nerves. We were fortunate to know a young woman from our town who had tutored our daughter in high school. She was very helpful in introducing us to students who wanted to help.
Our daughter lived in a dorm on campus, just like everyone else. However, she did have a private room because we felt she needed somewhere that she could be alone and “let down” when she was stressed. Also, we didn’t think she needed to adjust to a roommate and college all at the same time.
She did well and was kindly received by most students and faculty. There were always a few exceptions, but overall, it was a tremendous growth experience for her – both socially and academically. The key to her social acceptance was (in my opinion) largely due to the fact that the first peer mentor we found made a total commitment to helping her adjust, and was one of the brightest and best-liked students at the school. This is the young woman from our town, whom I mentioned previously. She was captain of the tennis team, an honor society student, and liked by almost everyone at the school. The fact that she was very pretty didn’t hurt her popularity either! Basically, she included our daughter in most, if not all, of her social activities. She arranged with the tennis coach for her to be one of the team managers. She explained our daughter’s challenges to the coach, so her duties as manager were geared down to mostly giving out towels and tennis balls. Everyone on the team appreciated her loyalty and her unflagging enthusiasm. She earned a Tennis Team jacket and a school athletic letter. She was proud and truly thrilled.
Also, whenever this young woman was invited to a party, she asked if our daughter could come. Much to her credit, if people said no, she didn’t go either. We didn’t ask her to do this- it was her own idea. She basically put out the message, “if you like me, I’m sure you’ll like my friend.” She also helped in finding other volunteers to tutor our daughter academically and to fill her own place as primary mentor when she graduated. She was a senior when our daughter was a freshman, so we only had her there for one year.
We never compensated this young woman with money. What we did in her case was lend her one of our cars to drive in exchange for her help. She didn’t have a car, so this was quite useful to her. We found that in most cases, compensating peer academic tutors with money was fine, but compensating peer social mentors with money ruined the relationship – both theirs with our daughter and theirs with us. So we did other things like arranging with professors to give course credits (partial only), helping with papers and information related to autism, and generally encouraging and listening to these young men and women – not just about our daughter, but about life in general. We had a few negative experiences along the way, but for the most part these people were very helpful. We had to use several people in this capacity each semester, as their time commitments had to be limited, due to their own study and social needs. None of them was ever as close a friend as her first peer mentor. I don’t know if it was how we arranged things or just that this first per mentor was very unique. All of our daughter’s tutors truly cared about her and wanted to help. However, most were rather casual friends. Only two other than her original peer mentors remained friends.
One other student became close friends with our daughter, but she transferred out after freshman year. She is still in contact with our daughter, having her sing at her wedding.
A month after our daughter graduated from college, she entered graduate school, and completed her Master of Arts in Church Music and Liturgy at the same college. The friends she has made there are ones she acquired all on our own. This is a testament to her maturity and how much she has grown in social skills. Life remains good for her and for us. I hope that a college experience will be possible for many more individuals with autism and AS in the future.
Preparing and carrying out our daughter’s college plans was at times terrifying, both to her and to us. We wanted her to have this experience and the freedom to grow as an individual. However, we knew how naïve and vulnerable she was. Our daughter wanted to leave home and have the college experiences she had heard about from others. However, she had never been away from home or us for more than a few days.
On the way back from leaving her at the college, I said to my husband, “What do we think we’re doing! She can’t survive without us! I can’t believe I ever made this ridiculous plan!” It took all of the strength and faith we could muster not to turn around and bring her home with us. Her peer mentor said that after we pulled away in the car, our daughter turned to her and said, “What will I do without my parents? I don’t know what to do now!” This woman said she had a look of sheer panic in her eyes. She hugged our daughter and said, “Let’s go for a walk and talk about it.” Although we each had our rocky times after that, I can truly state that the first day or two were the worst. Our daughter was caught up in a whirlwind of Freshman orientation, and we began to realize that she actually might not die without us.
My advice to other parents trying to decide about college is to use what Dr. Anne Donnellan once called, “The Criteria of the Least Dangerous Assumption.” Basically, ask yourself if the benefits of the experience will outweigh the risks. In our daughter’s case, we felt that her existence after high school without college would be boring at best. She had been surrounded with same-age peers for the last 12 years. In our town, most went off to college or got jobs that kept them out of town all or most of the time. Our daughter couldn’t drive, so her access to jobs and out-of-town excursions would be limited to being chauffeured by her parents. We felt she had the right to try what she had wanted so badly. I’m so very glad we believed in her!
The day our daughter graduated from college, just as she was handed her diploma from the college President, the big American flag in back of her flared fully open in the breeze. I thought it was tremendously symbolic of how, despite a few bumps along the way, she has lived the American dream for special education. She truly has been given the opportunity to learn in the least restrictive and most appropriate environment. We must all work to make sure that the American educational system allows this dream to come true for many others.