Wednesday, July 2, 2014

Transition to College for Students on the Autism Spectrum: My Most Important Lesson

Last night, the local weather station said that a responsible adult in every household should stay awake until 5 a.m. to monitor a tornado threat.  Good advice.  'Twas the night of the second-deadliest tornado in Arkansas history. 

In order to stay awake, I skipped my bedtime medicine.  In the morning, I was sick, not only from staying awake all night, but from forgoing the medicine that would have put me to sleep.  As I sat on the side of my bed in my flannel pajamas, my head swimming, a thought popped into my mind: the most important thing I know about preparing students with ASDs to attend college away from home.

Several years ago, our university started a comprehensive first-of-its-kind autism support program for fully-academically qualified college students on the autism spectrum.  Unfortunately, the university closed our program after three years.  I was the university professor who served as the program faculty advisor, so I was stunned and heartbroken.

In the three years we had the program, we learned an enormous amount about how to support our wonderful students with ASDs in their college transition, so although the program is gone, the knowledge we gained from working with them remains.  The most important lesson we learned was: High school students with ASDs must learn to manage their medication and medical needs long before they leave home for college.

Most of our students needed prescription medications.  Thinking about prescriptions wasn't even on our radar. We assumed that each student would know how to manage his own medications.  We were wrong.  We didn't even know what a college student needed to know in order to manage his medications.

A note before I continue: Since the majority of students who are identified as being on the spectrum are male, I will use the masculine pronoun throughout this post, although I may be referring to a female at any given time.  This will help protect our former students' anonymity and avoid the ponderous "he or she" or annoying "s/he."  A moment ago, I picked up a new, unread book on the floor by my chair and committed to opening it and using in this post the first male name I read.  Ergo, "Reza" will be the name of my student who is an amalgamation of several of our students who were on the spectrum.

At 10:00 p.m. one week into the semester, Reza announced to his peer Head of House that he  was out of one of his medications, and he could not sleep without it.  Reza had never before refilled his own medications; his mom had always assumed that responsibility.  She was an outstanding mother, but she had not thought about teaching Reza to manage his medication before he left home for college. 

We were unable to accommodate Reza that night, but in the morning, we made certain that he was on the phone to his mother to find out what he needed to do to refill his prescription, which we will call Rx A.  What pharmacy to use?  How to pay for it?  Insurance card? Debit card?  He had no idea, nor, of course, did we.  Mom made some quick decisions.

The immediate crisis was over.  We had a plan. 

After classes that evening, a peer mentor drove Reza to the pharmacy his mother had chosen.  Waiting until evening did not set well with Reza because his anxiety escalated since he wanted to go to the pharmacy right after he talked to his mother.  We explained that he would have to wait until someone was available to drive him.  Reza learned nothing in his classes that day, but he held himself together until someone was available to drive him.

His mother had called and transferred his Rx A to a large chain pharmacy from the small independent pharmacy in Reza's home town.  We did not anticipate that the context would provide a problem for Reza.  It did.

The woman at the counter was not the pharmacist Reza was used to seeing when he accompanied his mother to the pharmacy.  The large store was chaotic to this young man whose concept of pharmacy was a quiet, intimate setting where he was known by his first name.  Reza was almost positive that THIS was NOT a pharmacy.  But the peer mentor assured him that it was and accompanied him to the counter.  Reza did not know what to say to the pharmacy tech at the counter.  The peer mentor assisted him in asking for his medicine.  The tech rifled through the bags of prescriptions and provided the medication Reza's mother had ordered.  So far so good.  Then we discovered something new.

Reza had never used a credit or debit card, nor had he ever written a check.  Mom had always paid for everything.  Because his diet was restricted, Reza had never even paid for lunch at school.  His mother had given him a $500 pre-paid debit card for college, but he didn't know how to use it, and she had not realized that she needed to teach him how to use it.  Thanks to the peer mentor, whom he trusted, and the pharmacy tech, whom he did not, Rx A eventually got paid for, and Reza had his medicine that night.  The crisis was resolved.

The next crisis came the following week.  Rx B was due for a refill.  That morning, Reza's mother called the pharmacy with all of Reza's prescriptions, but she did not realize that Rx B had no refills remaining, and she was not at home when the pharmacy called back to say that Reza's physician would have to authorize the refill. 

Reza didn't realize that he had to have his physician's approval for his medication when he had used up all his refills, and he didn't realize that this could take several hours at best, or at worst, several days.  When the pharmacy tech tried to explain to him that Rx B was not ready, and that he could not pick up Rx's C or D for several days until his insurance company would approve them, Reza was confused and angry.  He began to pace and stim frantically.  The pharmacy assistant turned pale, backed away from the window and called her boss to intervene.  Customers stopped pushing their carts and stared.  The peer mentor saved the day by getting Reza out of the environment and safely back to the house before the pharmacist called security.

But that was only the calm before the storm. 

Rx B was ready the next day, but Reza escalated at bedtime when he got ready to take it.  His home pharmacy was a small, independent compounding pharmacy, and his compounding pharmacist made Rx B into a chewable because the tablet-form was hard for Reza to swallow.  The new pharmacy dispensed Rx B only as a tablet.  Reza was convinced that he had received the wrong prescription and refused to take it.  He fretted, paced, stimmed and cried, until he was so exhausted that he fell into a fitful sleep.  His mom had to have the doctor send a new prescription to a local compounding pharmacy the next day.  The pharmacist at the small compounding pharmacy was able to meet Raza's needs far better than was the large chain.

We encountered our next problem when Reza caught the flu.  The university's clinic could not see Reza for two weeks, so he was sent to a local urgent-care clinic. 

Reza's needs were so complex that he needed to establish a relationship with a local physician who understood young people who had ASD; meeting a new doctor at the urgent care clinic every time he was ill was too stressful.  Local doctors didn't like treating students who lived out of town.  They contended that students needed to continue being treated by their family doctors instead of having two primary care physicians. If Reza's mom had known to search for a physician six months before Reza became a student at the university, she might have been able to find one who would work with his family doctor back home, but she hadn't, so when he became sick, she had to take off work to drive 300 miles to come pick him up and take him home.  Unlike his peers, Reza was not used to taking care of himself when he was ill.  Every mother wants to take care of her sick child, but before he came to college, Reza needed to be transitioned into taking care of himself when he caught the run-of-the-mill bug.

Other problems? Some of our students took their medicine only sporadically.  Some simply forgot to take their pills.  Others didn't like depending on medicine when their nondisabled peers didn't have to take it.  The depression, anxiety disorders, and OCD with which they wrestled became much worse at the times they were noncompliant with their medical plans, so much so that their academic work suffered. 

The take-away from our experiences with these wonderful students on the autism spectrum is this: The most important transitional issue for students who are going away from home to attend college is to prepare them to manage their medical needs. 

After all, who cares about American History to 1865 when you can't get your antidepressant prescription filled, your OCD is out of control because you forgot to take your meds, or you have the stomach flu and are terrified of going to an urgent-care clinic? 

Not I.

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