3- Transition to College for Students on the Autism Spectrum: Don't Skip Class

A parent told me, “My child with Asperger’s has tunnel vision.  He can only see what’s of interest to him at the moment.  The rest of the world doesn’t exist.”  Indeed, the term tunnel vision has been applied to people on the Autism spectrum since Lovaas first used it in 1971.

Keeping in mind the caveat that My Young Traveler who has ASD taught me, “When you know one person with autism, you know ONE PERSON with autism,” I offer what seems like an obvious piece of critical advice to students with ASD who are preparing for post-secondary education.

Never skip a college class.  Not a lecture.  Not a lab. Not a field experience.  JUST. GO. TO. CLASS.

This advice sounds so obvious as to be ridiculous.  But it needs to be said because when our students with ASDs failed their college courses, lack of ability was seldom the reason.  Skipping class often was. 

We never expected that. 

Sometimes one of our students didn’t arrive at campus until after the first day of class and thereby started off in the academic hole, missing the course overview, the professor’s syllabus review, the reading assignment due for the next class day, and a shot at choosing a good seat to reduce potential student-specific distractions (air vent noise, window glare, open door distractions). 

Some students started skipping class the very first week.  Maybe the freedom of sleeping in with no parent to enforce getting to class was irresistible.  Maybe the anxiety of going to a first class where one didn’t know what to expect was the reason.  Or maybe the anxiety of failing to read the assignment given on Monday for Wednesday’s class caused the absence.

Sometimes students skipped class because they were upset about a personal problem.  Sometimes they skipped one class to finish the homework for another class.  Sometimes they hadn’t awakened early enough to have breakfast, so they opted to go eat instead of go to class.  Sometimes they were having such fun with their new friends that they didn’t want to leave the camaraderie.  None of these choices had a good outcome. 

Missing a class the first time seemed to be a watershed moment.  We found that once a student missed her first class, her attendance often cascaded downhill.  Skipping the next class was easier; attending, harder.  A professor told us, “Your freshman is a genius.  Her comments are like those of a graduate student.  But she’s already missed half the classes during the first three weeks, and I can’t allow her to continue.”

So I offer some advice.

1)    Don’t schedule classes before noon.

2)    Try an online class, but don’t fall behind. 

3)    Live at home so your parents can help you stay accountable for attending class.

4)    Go to class even if you haven’t completed the homework.

5)    Go to class even if you don’t feel like it.

6)    Go to class even if you don’t like the instructor.

7)    JUST. GO. TO. CLASS.  PERIOD.

 

 

Asperger's Syndrome and Personal Hygiene

Standing under the steaming shower yesterday, I thought about the years between my first brain tumor symptoms and its diagnosis: 1990-2004.  In those fourteen long years, I became irritable and tactile defensive.  Light touch hurt my skin.  I could tolerate deeper pressure, but light touch hurt.  I told my doctor, “The top sheet hurts my skin. So do my clothes, showering, and wind.”  He said I had fibromyalgia, and he put me on nortriptyline, an antidepressant.  He didn’t know I had a meningioma brain tumor, nor did he know that nortriptyline is the drug of choice for inoperable meningioma.  He heard horses; I had a zebra.  So he masked my symptoms while the tumor grew for fourteen years. 

Fortunately, my tumor was operable, and from the day I had it removed, I lost the tumor-induced aversion that I had developed to the sound of violins and to florescent light.  I became my usual imperturbable self.  And I lost my tactile defensiveness.

Then I thought about the college students with Asperger’s syndrome whom I have known.  For most of them, tactile defensiveness made personal hygiene an issue.  They hated showering, bathing, washing their hair, or brushing their teeth.  They wore the same clothes day after day.

At first, we tried hinting. “Susan, let’s put bathing twice a week on your schedule.”

“I don’t want to take a bath.”

“Okay… Then let’s put changing clothes daily and using deodorant on your schedule.”

“I don’t want to.”

Finally, we found a student who interpreted for us.  She said, “Water hurts our skin.  The shower is like little sharp needles hitting us.  The bathwater feels bad in a different way.  And when I get out of the water, the air on my wet skin hurts.”

Wow.  We had no idea.

Some students would get into the water but refuse to use soap or shampoo, and we asked her about that.   She said, “Soap and shampoo feel slimy on our skin, like rubbing the slime in a stagnant pond on your body.  Using a washcloth is like rubbing your skin with sandpaper.  And the smell of shampoo and soap makes us sick.  You have no idea how awful toothpaste feels in our mouth, or how much a toothbrush hurts us.”

We learned that the acoustics of the shower make sounds hurt, that deodorant feels gross and smells worse, and what the clothing industry has come to appreciate: that tags in clothes irritate the skin.  We learned that some clothes feel better than others, and when you are dealing with the stress of college life, you need to wear your most comfortable sweatshirt and jeans every day.  I get that.  Nothing feels as good to me as my old pjs.

We argued, “We’re so sorry!  But when you smell bad or look dirty, other people have to smell you and look at you, and they won’t want to be around you.”  That argument didn’t work because, by and large, our students weren’t interested in what other people felt or thought.  “If people don’t like the way I look, they don’t have to look at me.  If they don’t like the way I smell, they don’t have to sit by me.  Their problem, not mine.”

A more helpful argument involved discussing the overgrowth of bad bacteria colonies on unwashed skin, hair, teeth, and clothes.  We explained that soap broke the surface tension of water so bacteria could then be dislodged by friction, and that using water without soap merely resulted in wet redistributed bacteria.  We explained that water could then rinse the bacteria off the body, hair, teeth and clothes, and then down the drain.

The argument was useful, but the aversion to hygiene regimens prevailed.

So I offer some outside-the-box solutions to consider.

First, unless they are working up a sweat, people don’t need daily baths.  As long as hands, underarms, the area between the legs, and the bottoms of the feet are cleaned daily, much bacterial growth can be controlled. 

Single-use pre-moistened cleansing cloths can serve as a bathing alternative.  My ancient auntie used these daily for years and bathed only every couple of weeks.

Unscented shampoos and soaps may help. 

Bar soap may be preferable to shower gel. 

“No poo” advocates have recipes online for alternatives to shampooing.  (Honestly, it’s the “no poo” movement. Make of that what you will.) 

Chewing on and brushing with miswak sticks may be easier for people with oral sensory issues than is toothbrushing.  Miswak sticks are pieces of the Salvadora Persica (Toothbrush Tree). The chemical properties of the miswak decrease gingivitis, and at least one clinical study found miswakking more effective than toothbrushing.  You can buy miswak sticks from Amazon.  I ordered some this morning so I can tell people that I’ve been miswakking.

What works for one person with ASD may not work with another.  Ergo, ask the person who resists a typical hygiene routine what is uncomfortable about it for him.  Then look for ways to minimize or eliminate that factor.  Change one thing at a time and see what works.  Try to have the solutions in place before your child leaves for college when his world will become even more stressful.

If water hurt your body, soap and shampoo felt like slime, brushing your teeth was torture, and most clothes irritated you, wouldn’t you resist subjecting yourself to them?  I would.  So think out of the box and work with your loved one who has ASD to figure out person-centered solutions to make life better for everyone.

Autism Lesson 1: Disequilibration

My New Year’s resolution is to post monthly essays about autism.  People who love someone on the ASD spectrum need all the knowledge they can get, and post-secondary education for students with autism is one of my areas of expertise.  Ergo, this post on New Year’s Day, 2015.

My friend and I are Harry Potter scholars.  My HP house is Harry’s own Gryffindor; hers, Slythindor.  Leave it to my friend to create Slythindor.  No house fit her exactly, so she created her own.

My friend calls me Professor Dumbledore.  I call her My Young Traveler.  I drove 250 miles round trip to attend the midnight premier of The Half Blood Prince with her.  We also went together to the midnight release of The Tales of Beadle the Bard.

I was a fifty-something college professor.  She was a teenager with Asperger’s syndrome in our university’s Autism Support Program.

My Young Traveler (whom I shall call YT) taught me much about people on the autism spectrum.  One of the most important lessons she taught me was why change in routine distresses them.

Last night I watched an episode of Big Bang Theory in which Sheldon left home because impending changes threatening his life routine terrified him.  Leonard wanted to live with his new fiancé, Penny, instead of Sheldon.  Other life changes also threatened him, so he felt that he had no option but to run away somewhere… anywhere… indefinitely.

My friend, Rosie, told me how her five-year-old son escalated when she varied her route home from his school.  Logan’s after-school routine was to get into Rosie’s car, ride to McDonalds® for a snack, and then ride home while eating his snack.  One day Rosie detoured to the dry cleaners while Logan was eating his snack.  Logan panicked.  “This is not the way we are supposed to go.  We are supposed to go to McDonalds®.  I am supposed to get a snack there.  Then we are supposed to go home while I eat my snack!” He burst into tears.

In The Autistic ABA Therapist, Kelly Londenberg explained how changes in routine affect her.  She plans her movements like a movie.  If she wants a glass of water, she visualizes standing up, crossing the living room, entering the kitchen, selecting the glass, etc.  Once she begins this routine, an interruption causes her to escalate because it disequilibrates her.

When I asked My Young Traveler to explain what made a change in routine so difficult for people with autism, she asked, “Dr. Gore, have you ever been walking along the sidewalk thinking about something and then fallen off a curb?”

“I have.”

“You know how jarring that feels?”

“Yes.”

“Well, that’s how it feels when something changes our routine.  You weren’t expecting to fall off the curb.  You were startled and your body filled with adrenaline. It made you feel sick.  That’s how it feels to us when somebody changes something in our routine.”

So if you love someone with ASD, think about how upsetting falling off a curb feels to you.   Then when you must change your loved one’s routine, remember that he’s going to feel that same panicky, sick feeling.  Avoid the change if you can, but if you can’t avoid it, prepare him for it gently.

Make that your New Year’s resolution.  And make me stick to mine.

Worms, Dogs, and Little Children

On Monday, our new puppy, Laird Woodrow the Wirehaired, was the unwilling recipient of his shots and worming treatment. 

Today on one of his half-dozen walks, he pooped out a half-dozen live worms.  I pointed them out to Husband Don.  “Those things were inside Woodrow?” he cried.

I dutifully picked up the wriggling pile of dog poop in my trademark blue bag and carried it home to the trash.

As I was thinking how the worms were stealing the nutrients in the Blue Buffalo® we have been feeding our baby dog-person, I started thinking about the baby human-persons around the world who are infected with worms, so I started reading. 

I learned that parasitic worms are call helminths.

I learned that more than a billion people worldwide are infected with soil-transmitted helminths due to inadequate sanitation.  A billion. 

If you can’t get your heart wrapped around a billion people suffering from worms, try this:  A person is suffering from nausea, dysentery, intestinal obstruction, rectal prolapse, anemia, weakness, lethargy.  And it’s happening a billion times right now. 

Or try to wrap your heart around this: 1 of every 7 humans suffers from worms.

The World Health Organization says that worldwide, 880 million children need treatment for debilitating worms at this moment.  And the brains of those children cannot develop properly when they are so ill.

Worms burrow into children’s feet from the soil or skin from infected water.  They invade through the bite of a black fly or a mosquito or through eating infected meat or vegetables.

I’m not saying all worms are bad.  In fact, worms have been found to produce positive benefits for some people in some small clinical trials that must be replicated.  Dr. Eric Hollander of the Albert Einstein College of Medicine has collected data that suggest that ingesting whipworm eggs may reduce repetitive behaviors in some people on the autism spectrum.  His treatment is based on the Hygiene Hypothesis that posits we live in such a sterile environment that we’ve developed autoimmune disorders that are less common in third-world countries. 

I get that.  All Earthlings evolved together.  Some of us are parasites on others of us.  I am a parasite on the animals I eat.  Mosquitoes are parasites on me, but I get to continue living.  Some of us Earthlings have symbiotic relationships.  Like Baby Woodrow and me.

I don’t know what would happen if all the worms in the world died off, but I suspect we’d all be dead in a matter of weeks.  So I’m not saying that worms are bad.  I’m simply saying that my dog had parasites in his belly, and those parasites would have made him sick, perhaps killed him in time.

And I am saying that a billion people in the world likewise have worms that make them sick.  And that 880 million of those people are little children.

I don’t shop at Christmas.  Instead, I donate to charities that serve the devastating numbers of animals in desperate need.  But perhaps this year I will write an extra check- not in lieu of, but in addition to my usual donations- to a charity that could rid a little girl in Liberia of the worms that this moment are causing her to vomit her guts out, or a tiny boy who will die because his bowel is blocked with a pile of wiggling worms like my Woodrow passed today.  Because no child should have to suffer with a disease that I cured my dog from for less than the cost of going out for pizza and beer.

Callie: My Big, Black, Mixed-Breed Shelter Dog

Callie is my big black dog.  My big, black, mixed-breed, shelter dog. 

 

Six years ago, my grad students and I started the first-of-its-kind comprehensive support program for fully-academically-qualified college students with Autism Spectrum Disorders (ASDs). The university gave us a house on campus and scholarship money for the peer mentors who would work with our students with ASDs.

When we accepted our first student, her mom told me, “She needs a dog.  She can’t go to sleep at night unless she spends time grooming her dog first.”

“Okay,” I said.  I knew I’d never get permission to have a dog living on campus, so I forged ahead.  Easier to get forgiveness than ask permission.

I called The Clay County Animal Shelter in Henrietta, Texas.  I told Annie Boddy McClintock, “I need a big black dog to live in a house on campus with four college students who have ASDs and their three nondisabled peer mentors.  It’s now March 15.  I need the dog August 15.  Pick me out the right dog for the job.”  I hung up.

Annie got to work. 

I called her August 14.  Said, “It’s time.”

She said, “Come to the shelter tomorrow.  My staff and I’ve been studying the dogs all summer.  We have five big black dogs for you to choose from.  One has risen to the top of all of our lists, but we want you to make the final choice.”  I asked which dog had risen to the top of their lists. 

“I’m not going to tell you,” she said. 

My husband, Don, went to the shelter with me the next day.  We sat down in the dirt, and the staff gathered to watch.  I could tell they were nervous.  One staff member brought us the first big black dog.  He sniffed us in greeting and then ran off to dig a hole.  “Nope,” I said.  “I’m gonna be in enough trouble for bringing a dog to live on campus.  Can’t have a hole-digging dog.”

Second dog sniffed us in greeting and then hunched up and pooped right in front of us.  “Bad manners,” I said.  “We need a dog who will housetrain immediately.  This does not portend well for that.”

I don’t remember what the third dog did, but I eliminated it.

The fourth dog sniffed us a greeting and then ran off to talk to other dogs.  “Nope,” I said.  “Our dog has to be more interested in people than other dogs.”  Four down, one to go.

The fifth dog was Callie.  Six months earlier, three cowboys had found her trotting along a dusty road, dirty, emaciated, and dehydrated.  And VERY pregnant.  They picked her up and brought her to the shelter where she delivered four babies three days later.  The shelter staff named her Calamity Jane in honor of the cowboys.  They called her Callie for short.

When the handler turned Callie loose for us, she ran right up to us, sniffed at us, gave us a nice lick… and then turned her back to me, sat down, and scootched up to me to push her back full-length up against my side.  She sat quietly, attached to my side like a second skin.  I looked up at the assembled staff.  Their faces lit up like dawn on the Texas desert.

“This is the dog,” I said.  The staff cheered.

Callie moved into the campus house. The students continued calling her Callie but changed her formal name to Calliope, the Greek muse of music.  They didn’t think Calamity Jane fit such an elegant dog.

We enrolled her in obedience class.  She finished top of her class.  Then we enrolled her in intermediate obedience.  Top of her class again.  Big, black, mixed-breed, shelter dog.  Best in class at sitting, staying, shaking hands, downing, coming, releasing, and perhaps most important, “leaving-it” alone, whether a dead bird, a kid on a bike, or another dog.

Callie became famous.  The university newspaper published a front-page article on her.  Ditto our university magazine.  I got in trouble for bringing her on campus, but I expected that.  Armed with the research about the effects of dogs on students who have ASDs, I was able to convince the housing administrator to let her stay. Bad PR and all that, you know.

Callie read our students with ASDs like an open book.  When someone began to escalate ("melt down" for people who use that term), she sensed it, trotted over, sat down, and offered them her paw to shake.  Alternatively, she turned her back to them, scootched up against them, and sat on their feet.  Either way, she derailed the escalation and restored the peace.

The boys in residence slept in the bedroom upstairs, the girls downstairs; Callie slept with the girls.  The only time she aggressed was one Saturday morning.  The father of one of our girls had come to take her home for the weekend.  He knocked and knocked on the front door, but nobody answered.  He tried the knob, and it was unlocked.  He tiptoed down the hall and opened the door to the girls’ room.  Callie bolted upright, roared like a lion, and sprung at the intruder.  This man was NOT going to touch HER girls! Scared the poor dad to death, but reassured us all that she was going to take care of her family.

Three years later, when Callie was six, the university closed our program.  No fault of Callie’s.  She missed her college students, but she came to live with Don and me, so now she takes care of us.  She’s an old lady, seventy in dog years, but she still has the shiny, sleek coat of a young dog.  Callie, my big, black, mixed-breed shelter dog who went from being Calamity Jane to Calliope, the Greek muse of music.  First in her obedience class.  Autism specialist.  Changer of lives.

Thank you, God, for Callie.  Thank you for the gift of big, black, mixed-breed, shelter dogs.  Alleulia and Amen.

.

2- Transition to College for Students on the Autism Spectrum: OCD

My college students with Autism Spectrum Disorders (ASDs) thought of me their Professor Dumbledore.  I thought of them as my young wizards. And Dark Magic became my metaphor for the Obsessive Compulsive Disorder (OCD) that some of them battled. William was one such young wizard.

Early in the semester, each Honors Intro student was required to submit a paragraph describing his proposed research topic for the course.  The paragraph was worth 10% of the course grade.

A week after the deadline, our smart and talented William had still not submitted his paragraph.  His professor, Dr. Romero, emailed William and cc’ed our “Head of House,” graduate student Jessica Dunn; Dr. Romero said he would give William another day to submit the assignment. 

Jessica, who was completing a Master’s degree in Special Education with an emphasis in Counseling, talked with William.  She asked to see his paragraph.  He produced 15 versions of the same paragraph.  She asked him how she could support him in turning in his assignment.  William said that he wasn’t satisfied with any of the versions, and he was not going to submit his work until he was satisfied with it. 

Jessica reviewed the course syllabus with William and pointed out that the assignment earned 10% of the grade simply by being submitted; any of the paragraphs would earn full points.  All William had to do was select any paragraph he had written and send it to Dr. Romero.  Jessica offered to help him pick one.

Nope.

A week later, Dr. Romero contacted me.  He told me how insightful William’s comments and questions in class were.  And he told me that William had still not submitted his paragraph. 

I tried to leave all interventions to Jessica and the peers who provided wraparound services for my young wizards.  Part of what was revolutionary about our program was that it was completely student-driven.  However, that night I played Professor Dumbledore and paid my young wizard a visit.

I told William about my call from his professor.  I asked to see his paragraph.  William wrung his hands and paced.  In a high, constricted voice, he told me that he had realized that he had selected the “wrong” topic.  He had finally figured out the “right” topic, and he would have to start over on his paragraph.  I told him that no topic was right or wrong for the course project; he needed to proceed with the topic he had previously selected. 

Nope.  That was the WRONG topic.  He had to write about the RIGHT one.  He raked his hands through his hair, chewed frantically on his bleeding fingertips, and clenched and unclenched his fists.  His OCD rampaged.

Because of the intensity of his response, I told William that if he had to use the new topic for his project, he should contact Dr. Romero, explain the problem, and submit a new paragraph the next day. He agreed.

A week later, Dr. Romero called me again.  Still no paragraph from William.  I went to see William again and asked why he had not sent his paragraph.  “It’s not ready.” 

I asked to see his work. He opened a document with 27 versions of the new paragraph; only a word or two differed in each.  None was acceptable to him. 

“Just pick one and send it,” I said.

“No!  I can’t! I don’t know which one is the right one!”

I leaned back on the couch.  “Take a deep breath,” I said, “Then send the entire document, all 27 versions.”

“No! I have to figure out which is the right one!”

I sensed that pushing William further could be catastrophic.  “You’re an adult, and I can’t force you,” I said. “You’ll have to decide what to do and then deal with the consequences of your decision.”

William never submitted the paragraph.  He dropped the course instead.

We knew that we would have challenges assisting our wonderful young wizards with ASDs in their transition to college.  Unfortunately, we never anticipated having students who had the severity of OCD that William had.  OCD turned out to a metaphorical Dark Magic that controlled William.  We did not have a metaphorical counter-curse that would protect him.  Perhaps Exposure and Response Prevention Therapy could have helped him, but only a skilled, experienced psychiatric professional in a controlled environment could have provided that for him.  We could not brew that potion.

 

Parents of children with ASD and co-morbid OCD need to work with their psychiatrists and therapists to ensure that the OCD is under control before their youngsters leave for college; alternatively, their children may need to live at home and commute to college, at least for the first year. Heads of House, old professors, and the young wizards themselves can only do so much.

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.