College Lessons Learned
Updated: Apr 16
On paper, my son is a college admission counselor’s dream. Straight A’s since the 3rd grade. National Merit Scholar, near perfect test scores on assessments and SATs. Top 5% of his graduating class. Too many academic awards to count and scores of 4 and 5 on AP exams. So, going off to college to find his way in the world should be a no brainer?
Should, except when your child is on the spectrum, even the high end, it's not that simple.
Flashback to his junior year of high school. I hire an independent consultant to help with the process. I get heavy push back from my son, who is not sure he wants to even go to college. He is very sure that he does not want to put in the effort, particularly the writing of the dreaded college essays.
The eager mother (that would be me) with the help of the consultant, breaks applying down into a digestible step by step plan with assurances that engaging in the process does not mean he will have to go. One step at time and I promise, it will be his decision.
He was accepted to most of the schools he applied to. Yay! He also was transparent in his personal essay, writing about how autism has impacted his life and his plans. Immensely proud of him, but now this gets real.
He has the smarts. The question is does he have the social and emotional skills? How will he develop those skills without understanding and support? He knows how to prepare a meal and take an Uber. He can manage his laundry and food shop. Most of the time he remembers to take his meds. Is that enough?
His grades matter to him, but the academic piece was the least of my worries. We toured the colleges and met with their disability support departments. He needed accommodations and would there be a connection?
After eliminating the out of state colleges (too risky) and considering living at home but commuting and looking at schools that had housing and programming to support ASD students, we chose a school about a 3-hour drive from home. My son needed to transition to a more independent life. I thought he could handle living in a dorm with honor students. The program promised peer mentorship, which I saw as a value add. The academics were almost ancillary. He would have a community.
During orientation, I could feel his anxiety building. At the end of the four days, he was having full blown panic attacks, crying and breathless. Was I making a terrible mistake?
While he was attending orientation, I was busy finding any additional supports around campus and in the area. I covered a lot of ground. Through a local Behavioral services agency, I hired a young RBT to spend time with my son, to facilitate his social interactions and be someone I could contact who would be honest with me and not sugar coat.
So, to recap, he is living with likeminded students. Supposed to be assigned a peer mentor. I could not have imagined a more experienced or supportive Director of Disabilities for my son to have in his corner with weekly check-ins. My RBT will be with him at least twice a week and we are only 3 hours apart. This plan made leaving him easier, but that drive home was something I will always remember.
The first year had its difficulties. My son’s suitemates learned to appreciate him, but he never made a friend. They treated him like an annoying younger brother. His roommate’s mother sent a nasty email to the college that her son should not have to live with someone with autism, but her son and the college let things ride since the roommate liked my son and expressed to the disabilities director that he thought he could do a lot worse. Not ideal, but manageable.
With all the support in place, my son still ate every meal by himself, except for the occasional lunch with his RBT. He travelled the campus alone and outside of his fellow honor students; his social life was going nowhere.
His lack of self-regulation and impulse control created some major problems with a few of his professors and he was getting a reputation around campus for his verbal outbursts and his meltdowns. The Dean of Students had received emails complaining about his disruptive behavior. He was a "problem", but the school was willing to work with him, to a point.
It became clear to me that the honor student community was anchoring him and since the requirement that they live together did not apply beyond that first year, I saw trouble on the horizon. I recommended he try asking some of his suitemates, even classmates to room with him the following year but as kind as they were to him, no one wanted to live with him.
I reached out to housing and DDS to help find a supportive living environment, but I hit a wall. They were sympathetic but not equipped. The best I got was, if it turns out to be a bad fit, he can request a change.
Sophomore year explosion. The living situation was a disaster on every level. He was moved to a single. For most students, that is a dream come true. For him, it was the beginning of the end.
My son lost his community. He became even more isolated and stressed. He was falling apart in public and I feared for his safety. I had been driving up on weekends to keep him company and eventually had to take a family emergency medical leave to get him through the semester, salvaging 3 of 5 classes.
He was given two options by the school. Take a leave of absence or we are going to ask you to withdraw. He was devastated. In his mind it was an epic failure and worse, he was a failure. He became fixated. FAILURE!
I struggled to turn what was happening into an opportunity and a learning experience. I scrambled to move forward with a better strategy. It was a hard sell at the time. He was not buying.
To circle back, the title of this article is College Lessons Learned. So, here they are:
For students with autism, college is a unique opportunity for personal growth and skill acquisition, with appropriate support.
Getting into college and thriving while you’re there, require vastly different skill sets.
More support is better than too little, because scaling back support is easier than ramping up, especially during a crisis.
Programs with embedded support services are preferable to a patch work of disconnected professionals.
Supported living while enrolled in college is a solid first step to transitioning to traditional campus housing.
Virtual learning will get your child a degree, but will not teach them to transition to an independent and successful life.
Hope is not a strategy.
I am grateful that my son’s college story is still being written. As the Director of Residence Life at Summit Campus, it is my privilege to share these lessons learned.
It is our mission at the Summit Campus, and my personal passion, to meet our residents and their families where they are and guide them through this time in their lives toward a promising future of their own design.
Please contact me at firstname.lastname@example.org for more information or if I can be of service.