A Parent’s Perspective on College

Michelle Alkon, AANE Coordinator of Adult Services

Hello. I appreciate the opportunity to talk today and share some of my experience about the college transition process as well as some lessons learned along the way. I guess I should say here at the outset that I am not just an AANE employee but I am also a satisfied customer with a 20 year old son with AS.

My son, Scott, is a junior at Brandeis University but is currently doing a semester abroad in Africa. This is his life’s dream; he wants to study animal behavior, which he calls ethology. He is living in a field station in northern Tanzania in a hut with no electricity or running water studying principles of wildlife management. So far, he is doing just fine. Well, I think he is doing fine. I get an occasional email that is a reply to one of the long, heartfelt, messages I write to him every night. His replies are one word answers inserted where I have asked a direct question like, “Have you been taking your malaria pills?” (“Yes”) or “Have you seen any wild animals close up?” (“Lions”). My husband reminds me every couple of days that the program would certainly call us if he was eaten by one of the lions or had fallen ill with malaria. And I am sure they would. However, I am equally sure they will not call if all the other kids exclude him, if he is stressed about keeping up with the workload, if he has lost all his stuff because he forgot to put it away, or if he hasn’t eaten anything but rice because he is afraid of getting some parasite he read about on the internet. I just have to worry. But this is essential quandary for parents of college students: What is the parent’s responsibility and what is the adult child’s responsibility? I fervently wish for an email or a Skype for reassurance but I can’t micro-manage or grill my son if I get an opening. He needs to be independent and I need to let that happen.

So I am going to back up a little and work through with you how we got to him in Africa and me imagining dengue fever and tsetse flies. Scott was diagnosed at age 5 with AS. He was in an inclusion program in our public school system through elementary school, and then in an integrated program for middle school and high school. He was intellectually very strong but had some significant deficits in the areas of executive function, social skills and theory of mind. He also has dysgraphia and, oddly, has no sense of smell. He was successful in high school with good grades and high levels of involvement in the school community. He was, for example, elected to serve on the student council and participated in the science club. e had nearly perfect SATs. However, he never really had a friend or was invited to a party or even a movie by another child. His cell phone never rang and weekends loomed long and lonely.

Scott applied to nine colleges: three reach, three ballpark, and three safe. We chose these schools from a list narrowed by size, location, grades, scores and whether they had support services for students with disabilities. We also visited many schools and rejected some outright based on the feeling we got during the visit. Unscientific, but this was really important. His essay was about animal behavior, Temple Grandin, and having autism. He got into most of his ballpark and all of his safe schools and was waitlisted at Brandeis. He revisited three campuses with a clear focus on what he was looking for and chose a great school. He seemed satisfied. However, after all the acceptances were official, Brandeis called and offered him a spot. He visited one more time and with some inner-struggle (because changing your mind is very hard if you are Scott) accepted the offer. It turned out that this was the greatest, most wonderful outcome that could have happened. Why?

Factor 1: Proximity. Having Scott at school 10 minutes from home has been a huge help in transitioning him to college. There are two main reasons for this. First, it turns out being social and immersed with peers 24 hours a day is exhausting if you have AS. He has to work really, really hard during his free time—harder really than in the structured time of classes and labs. The kid needs a break! When he calls us, we pick him up and take him home. He spends some time with our dog, maybe takes a nap in his own bed, and eats an enormous home-cooked meal. Sometimes he sleeps over, sometimes not. He re-centers himself and is ready to return.

Second, I function as Scott’s external executive function. We did not fully understand this when Scott was in high school—but he had not really learned to study. We thought he had. After all, he was getting A’s and his inclusion facilitator was working with him 4 periods a week. But, in reality, he was just really smart and had a great memory. He retained the material enough to just sort of read through the chapters and then ace the exam. In college, as it turns out, surrounded by equally brilliant peers and much harder curriculum, he struggled for the first time academically. He had to learn to study for tests, get his homework and papers done and his lab results analyzed. There are people at school to help with this but he did not want to use them. For whatever reason, he did not like making appointments with the disability coordinator, who, by the way, was open and willing to work with him on this. I continue to work with him even more than I had in high school, helping him to organize his work, get his thoughts down on paper, schedule his studying and manage his time. He has been open to learning these skills and this has been a positive, if painstaking, process that I could not have done if he were farther away. I still provide significant support, but he made huge improvements in the first two years of college.

Factor 2: Culture and environment. When we visited schools during the pre-application college road trips and again after acceptance, we were struck by the incredible differences between schools in similar locations with identical student academic profiles. My son realized he needed an intellectual environment, where students discussed what they were learning in their classes or events in the news. He could not survive in a party school or in a school dominated by athletics and varsity clubs. He is not up on pop culture and certainly not athletics or being cool. So we made sure to eat lunch in the student dining hall, look at the kids, and eavesdrop on conversations. Were they talking about parties, drinking and clothes or about politics? We made sure to choose a school with little fraternity focus but lots of special interest clubs. Brandeis has something like 125 official clubs. For example, Scott has joined the swing dancing club (explaining to his incredulous parents that that’s where the girls are), and BORG club where members read and discuss works of science fiction and fantasy. He also joined the Hillel which has been welcoming and familiar and was invited to participate in an interracial retreat to promote campus harmony. He contributed to the satirical newspaper and tried throwing pots in the pottery club. My point is that none of these are varsity clubs; they are all newcomers looking to try something interesting and make informal connections.

Another important part of the culture is to see how prevalent single rooms are. For my son and many other kids with AS, it is essential that he have a single. I know you think your kid is, but really, Scott is the world’s messiest human. Also, he can be pretty annoying. He talks and talks and talks until someone tells him “enough.” His study habits are unique: he needs the TV on and he does not like music playing. He sleeps at odd hours. He laughs out loud at the TV and at comments on his internet forums. But beyond this, he needs a place where he can relax and not have to concentrate on being social. The potential downside of a single room is isolation. Without a roommate, there is no forced buddy to do things with, particularly as a freshman. However, if you are in a school where many of the rooms are singles or in suites, that odd man out thing ceases to be an issue.

So what can I tell you to do that I did not do? There are a couple of important things that I would have done differently. For one thing, in high school, I would have made my son read every single word of his IEP. He did not really understand the breadth of his disability and the efforts that were being made to support him so that he could be successful. He knew he had AS and had trouble with some things, but did not understand the degree to which people were providing continuous support and accommodations to him. He thought he would be OK if he just got extra time on his tests. He now knows what accommodations are required for him to be successful and can sort-of advocate for himself to professors and classmates. I should have made sure he could describe his strengths and weaknesses and articulate clearly how people around him could help him to be successful. For example, he can now tell people, “If I talk too much and I am annoying you, you can just tell me to shut up. I won’t be offended if you do and I guarantee I won’t know if you don’t.” Self awareness is imperative. Asking for help to the right person at the right time is a real skill. Instead of sweeping and smoothing the path before him, I should have been compulsive about making sure he could recognize clues and cues himself.

Finally, the other lesson I have learned is the advice I started with- try to reach a balance that allows you to protect your child while letting the college student be an adult. Be sure he knows you are there for support but let him come to you. I do not mean that you should let the little bird fly free. After all, he has Asperger syndrome and is only 18 years old. But you need to let the rope out a little more than feels comfortable for you. I spend a lot of time with my son. Way more than my friends spend with their typical college sons. But this is the balance that feels right to my son, if not to me. I have discovered that he won’t learn to do something if I do it for him. I want him to be competent and confident and capable and independent. It may take him extra time to get there but it did get him to Africa and, hopefully, will get him home.

Addendum: After a series of emails from his worried mother, begging for some news, Scott sent this email. It shows both the wonder of his experience as well as his theory of mind challenges as he clearly did not understand how to alleviate maternal concern! I have inserted translations for the Swahili since we had to look it up! We have advised Scott to wear socks to bed or use his sewing kit.

This morning, the askaris [guards] found a black mamba in the bags the kitchen stores its food in. It’s raining hard here as of two hours ago. When we got here, there were bats chilling in the chumba [dining/lecture hall] every night, but they haven’t been seen for a few nights. My days of being Batman are over 🙁 I saw zebras and twigas [giraffes] while on foot yesterday. My group walked toward them until they started moving away to keep distance constant. Oh yeah, the fence is back up. Did I tell you it was down? The staff had to chase an elephant out of camp the day before we got here. The day after we got here, baboons came through. Also, my mosquito net is full of holes, so I keep getting bites on my feet.