Autism in College (year 1) / Autism

Autism in College (year 1)

Sending our daughter off for her first year of college filled me with a smorgasbord of emotions. I was...

excited - for her to start her future as a young adult
hopeful - that her college experience would be just as enjoyable as mine was
nervous - about how would she handle the academic side of college
grateful - that we had a diagnosis which opened up the option of connecting with the disability office
worried - about how we could make sure that she starts on the right foot with the necessary accomodations
anxious - wondering, would she be able to make connections and meet people

My daughter was also filled with these same emotions. She was excited to go off to college, but was nervous about all the changes that were to come. My daughter has commented on more than one occasion that she ISN'T excited about getting older. She is very nervous about the responsibilities that come along with being an adult and her ability to handle all of that.

Our timeline from the first year of college....

A parents perspective:

Research

April-May

Prepping

June-August

Naive Bliss

Sept.-November

Panic

December

Hard Work

January-May

Relief

June

April-May (Research)

I wanted to make sure that I learned as much as possible about how to help my daughter be successful in college, so I got this book (The Parent's Guide to College for Students with Autism by Jane Thierfeld Brown) and read it cover to cover. It had a wealth of excellent ideas and situational andicdotes that were very relevant to things that my daughter may experience in college. I would highly recommend this book for anyone that wants to learn more. I learned a LOT from reading this book...but below are just some of the big ideas that stood out to me.


IEP's, 504's, Disability Office	In high school a student can have an IEP or a 504 plan. Those documents DO NOT follow the child to college. Any accomodations that you receive in college will be determined by the Disability Office. Scheduling an appointment with them is a must!
Creating a Network	It is important to surround yourself with a network of people that you can lean on for support whether this be counselors, therapists, RA's, roommates, etc. College is not something to try to do alone. One of our big hopes was that our daughter would share her diagnosis with her RA so that there was someone in the dorm that would recognize her social struggles and encourage her to join in and participate....unfortunately my daughter did not want to do this, and we respected her decision, although I think it would have helped tremendously.
Legal Adult	Once your child turns 18 they are a legal Adult, and the university won't communicate with you about anything without your child present. What this boils down to is, no matter how much effort you put in to helping your child succeed...if your child won't take the step to actually use the resources and help, then there's not much you can do about it.
Setting Ground Rules	Based on our experiences with high school....we knew that our daughter was VERY capable of getting good grades in college, but that it would be hard for her to stay motivated and put forth her best effort. If you have a child that is very capable, but lacks motivation....then you know how frustrating this can be!! We wanted to set some ground rules ahead of time so that she knew what our expectations were of her while she was in college. With an ACT score of 29, and the ability to get all A's in high school when she actually tried...we figured she could probably pretty easily earn at least B's or higher in college. We set a firm line and told her that we expected her to get at least a C or higher in all classes. We discussed with her the cost of going to college and the investment she was making in her future. Because she was capable of getting good grades, we decided that an appropriate natural consequence would be...that she would have to pay the entire tuition cost for any classes that she earned a grade below a C. She thought this sounded fair and agreed. We began to implement this at the end of her senior year with her paying the equivalent of "1 college credit" for any high school grade that was a C or below. Even though she had the opportunity to retake her tests in high school and turn in late assignments for full credit....she still had one class that she simply couldn't motivate herself for and she did end up paying about $500 for that class....the equivalent of 1 college credit. We were hoping that would be enough of a lesson for her and made a mental note that she would get that money back when she did well in college....but unfortunately it took awhile for her to earn that money back.

June-August (Prepping)

The summer before my daughter went to college was filled with all of the typical college tasks. But, knowing that this was going to be a HUGE change for my daughter and recognizing that her struggles with executive functioning and social skills would make this transition stressful, we took some extra steps in preparing our daughter for college.


college tours	It felt like we did a LOT of touring the campus. I think we came to campus four times before move in day. We did the original guided tour, before she had decided what college she was actually going to attend. Once she had chosen her college, then we scheduled another guided tour, but this one was specific to the major that she would be going into and talked about the specific program. Then, we scheduled another meeting with the disability office during the summer to get her signed up for accomodations. This gave us another opportunity to walk around campus. Then finally she had her new student orientation where she actually signed up for her first semester classes. This gave us the opportunity to actually walk through her schedule and get her used to the schedule that she would follow during first semester. All of these opportunities to visit campus meant that when it was time to actually move in our daughter was quite comfortable with the layout of campus, which took away one stressor for her new adjustment to college life.
shopping for dorm supplies	When it came time to shop for supplies for her room, we did the shopping at the Walmart in her new college town. The layout of this Walmart is set up differently than our home town store, so by shopping there, she was able to get familiar with the new layout since this is the store she would be using while she was at college. During our shopping trip, I gave her the lead and just sat back and followed with the cart. She was VERY excited and loved having the freedom to do her own shopping. It was fun to see a new side of independence shine through her during this shopping trip.
transferring medications	We researched the different options for where to have her medications filled while at college. She chose the local Walgreens because it was within walking distance from campus. During one of our trips to tour the college, we stopped by the Walgreens so she could transfer her medication refills and get a look at the layout of the store. I used this opportunity to show her the different over the counter medications that could be found in the store and discussed the different ailments they would be helpful for. (We had already gotten a bunch of general over the counter meds for her to have on hand, but I thought this would be useful in emergencies). When it was her turn to go up to the pharmacists counter, I just stood back in the aisle and let her lead the conversation. I was there to help if she got stuck, but I wanted her to have the opportunity to try to lead the interaction. Of course, we had already practiced and rehearsed what she would say ahead of time, and she did a very nice job talking with the pharmacist.
academic prep	Looking back, this is where we didn't spend enough time preparing...but, you don't know what you don't know. I began taking Graduate classes at the same time as my daughter began college and I quickly learned.....there is A LOT that has changed since I was in school!! Everything now.... and I mean EVERYTHING...is done online! Learning how to navigate the online learning portal definitely has a steep learning curve. Since we didn't know anything about this at the time, most of the time was spent making sure my daughter was watching her training videos that explained this learning portal. There were a LOT of other things we could have done here to make her first semester more successful....but at the time, we didn't know what those things were. (That will be discussed more during the "Panic" section that began in December.) We knew from our research that having access to the syllabus ahead of time would be helpful....but my daughter didn't want to ask for it ahead of time.

September - November (Naive Bliss)

There isn't a ton to write about in this section. The title says it all. We were very naive. We thought we were asking the right questions and checking in our daughter enough, but we had NO idea how much she was struggling during her first semester of college. Unfortunately...neither did she.


What we did....	We did all the things you think you should do to support your child as they start their first year in college. We called regularly, asked how she was doing, asked how classes were going, and even stopped by to visit since she was only 45 minutes away.
What we learned...	The questions that we asked our daughter were way too vaugue. Our daughter is very honest and when asked the right question she will answer truthfully and take responsibility. We simply didn't ask the right questions. We also learned that our daughter was not yet able to recognize when a problem was starting so she didn't know that she needed help fixing it. Had we asked the right questions and known that she was struggling, we probably could have helped her be successful with her first semester of college.
	So the months of September-November puttered by uneventfully as we all assumed things were going well. This would all change suddenly during Thanksgiving break!

December (Panic)

A couple of days before I was supposed to pick up my daughter from college for Thanksgiving break, she called me with news that would send our next month into chaotic crisis mode. My daughter NEVER calls....nothing personal, she just doesn't like to "chat." So, I was surprised when I got a call from her and she sounded very upset and was close to tears. Through tears she let me know that concerning her grades in college, she had gotten herself into a little bit of trouble. She had thought she'd be able to fix it herself and had spent the last week trying her best, but she realized that she had dug herself a hole that she couldn't get out of, and now she needed to let us know.

The bottom line was that she was failing a class and getting D's in a couple other classes. She had figured out that even she was going to have to retake some of these classes and one of the classes had even higher requirements for her major and she would have to retake that class if the grade was below a C.

The vaugue questions we asked

vs.

the direct and specific questions we SHOULD have asked

How is college going?
Have you met anyone?
How are you and your roommate getting along?
How are you doing in your classes?
Have you scheduled any therapy sessions yet?

What grade do you currently have in _______ class?
How many missing assignments do you currently have?
How many late assignments have you had so far?
How many classes have you missed?
When is the last time you and your roommate talked? What did you talk about with her?
How many meals are you eating each day?
Have you talked with anyone else on your floor? In your hall?
What day/time is your next therapy appointment scheduled for?
How many times this week have you gone to the tutoring center? For what classes?

Product	Price
High School Vs. College	My daughter's high school had very lenient grading policies and allowed students to retake tests and turn in assignments late (for full credit). We tried to prepare our daughter for the grading changes that would come with college....but unfortunately it was a lesson that she had to learn the hard way before it became a reality for her. By the time we found out she was struggling she had a TON of missing assignments and low test scores. She had gotten so far behind, that she just couldn't catch up in time before the semester ended.
Grading Confusion	During high school report card grades were on a traditional A,B,C,D,F scale, but all assignments and tests were graded with standards based scores that went from 0-4. If students did well they earned a 3 or 4. In talking with our daughter we realized that she had no idea how percentages correlated to letter grades. When she would get 70% or 4/9 correct, she figured that was probably pretty good. We quickly realized that for her to understand how she did on her assignments she would need a document to record her score and the equivalent letter grade for each assignment and test.
Accountability	We wanted to give our daughter the freedom to be an adult and navigate her own schooling (we had kept a tight check on her grades in high school), but we waited too long to see what her actual grades were. We didn't find out until November that she was struggling to get assignments turned in and get good grades on tests. We had a general idea what her overall grades were for each class, but we didn't have any information on how she was doing on specific assignments. Looking back, I still would have given her some time to adjust and try it on her own...but 3 months was way too long to wait. I wish that we had picked a time at the end of September to check in with her. Now, "checking in with her" to go over grades would have to be much more than her showing us what the overall grade was. That is what we tried, and that wasn't near enough accountability for her. By "checking in" with her, I mean.... having her go through her online learning portal (that is what it's called now adays) and having her show us the grades that she was getting on each assignment, in each class. This seems like a lot of work, and I'm sure we won't have to get that detailed with out other children, but with my daughter's executive functioning skills incredibly affected by autism, it was a neccessary level of accountability that she needed to keep her on track. After her 1st semester she was put on academic probation and had to retake 2 or 3 of her classes. Knowing that we need to set "ground rules" for our daughter, we made sharing her passwords one of the conditions to being able to go back to college for second semester. With her permission, I know have the ability to see her learning portal at any time and can check on her regularly to make sure she is staying on track. When she went back for second semester, this meant I was checking her assignments on a DAILY basis, every morning before I went to work. I wanted her to know that I wasn't checking on her so that I could nag her constantly about her grades, but rather that I wanted to be able to step in and help if she started sliding. This allowed me to give her reminders if she had missing assignments and allowed us to have conversations about really low test grades so that we could problem solve for the next assignment/test. Along with checking her grades daily for accountability, I also drove down to visit her at campus once a month, for the first couple months of the semester. During this time I would have her show me the different organizing tools that we had created together during winter break and we would talk about which ones were working well for her. She would also walk through her learning portal with me and explain different assignments that were coming up. This was an opportunity for us to figure out that there were parts of her learning portal (that had ungraded learning expectations) that she didn't realize she was supposed to be doing. Walking through these things together and having her talk through them is exactly what she needed in order to learn the process.
College Resources available	Before college began, we got my daughter hooked up with the disability offices and had accomodations approved for her. The only accomodations that she felt like she might be able to use was an app on her computer that would allow her to record the lectures so she could go back and listen later. I think it also helps her organize the lecture information into notes. The other accomodations that were offered, she felt wouldn't be beneficial for her. Because she was a student with a documented disability, she also gained access to the schools "TRIO center." This is a special support system that the school has set up for students belonging to one of 3 categories....first generation college student, low socieconomic situation, or..... a student with disabilities. I would say that this TRIO center has been the thing that has been MOST helpful and has helped her turn around her academics. The TRIO center offers a TON of resources for students who qualify...but due to some of her other struggles, she has not taken full advantage of the opportunities. The services that have been incredibility helpful for my daughter are the tutors that are availiable for help with class work, which is also available to general university students, but I think there are more resources at the TRIO center. Our savior though, has been the advisor that our daughter meets with on a weekly basis at the TRIO center. This person helps my daughter look at the weeks assignments and plan for time management to get all of her work completed on time. This was the piece that she needed help with. Our daughter is incredibly smart and does well academically....but struggles with organization and time management (executive functioning). So, having someone help her navigate the time management piece of college was exactly what she needed. She had access to this during her first semester, but didn't use it....and didn't really know that she was struggling in this area. This was another condition that we set for our daughter. In order to return for second semester, she had to agree to meet with her advisor on a weekly basis. I really think that had a huge part in turning her second semester around.
Roomate experiences	When I would ask general questions about how her and her roommate were getting along I would get general answers like "fine" and "good." When I started asking very specific questions though, I began to realize that my daughter's interaction with her roommate was anything but typical. By asking very specific questions I understood that on the positive side, my daughter and her roommate seemed to get along fine and had no major issues with each other. But... on the other side, things that seemed totally normal and not a big deal to my daughter, may be viewed as very strange by her roommate. My daughter shared with me that her and her roommate didn't really talk and that when my daughter saw her roommate (either in the room or in the hallways) my daughter didn't really acknowledge her or interact with her roommate. I asked my daugher if she made eye contact and smiled when she saw her roommate in the room, my daughter said "not really." So, the social experiences that I was hoping my daughter would get through college, were pretty much no existant. She was not interacting with anyone at college on a personal level.....not even her roommate. By the end of her 1st year of college, my daughter still hadn't met a friend at college, but she didn't seem too bothered by that, as she likes to be by herself most of the time.
Activities and social interactions	In order to meet friends, we encouraged our daughter to join some activities that might be of interest to her. To her credit, she did try a few activities and clubs. She really like the self defense group, but they stopped meeting after a few times. Some of the other groups that she tried to join, she was interested in, but executive functioning skills and social exhaustion became a preventing factor. When she wanted to go to meetings, she would often forget or loose track of time and miss the meetings. Other times, she wanted to go to the club meeting, but after a day of school work and classes she was too exhausted to do anything and needed "down time."
On Campus Job	Our daughter had wanted a campus job, so we encouraged her when she showed interest in working at the front desk of her dorm. We figured this would be a great way for her to meet the people that she lived with and at the same time have time to work on her homework while at work. But, in her introverted ways, she didn't interact with anyone at the front desk beyond just giving them whatever item they requested and didn't really acknowledge people as they were walking by. We thought that she had finished the first semester working at the front desk and then just wasn't hired back for second semester (because that is what she told us.) But we later found out that about a month or two into school she actually resigned from her job because it was too much for her to handle.
Food choices	Eating healthy has always been a struggle for our daughter. She often doesn't eat enough food (the fear of always throwing up from anxiety), and when she does eat it definitely isn't a balanced meal. She would live on cheese roll ups and grill cheese sandwiches if she could. We signed her up for the small meal plan at college, knowing that she probably wouln't eat 3 meals a day. But, when I asked her direct questions about her eating habits while at school I found out she wasn't even eating 1 meal a day some days. It took her about a month to actually figure out what times the dining halls were open and then she often missed those times. She was eating a lot of junk from Kwik Trip across the street, and wasn't getting the proper nurishment that she needed to have the energy to tackle school. One of the guidelines for going back second semester to college was that she had to eat at least 2 meals a day at school (not Kwik Trip) and we actually scheduled those meal times into her daily schedule that we came up with together.

January-May (Hard Work)

After our long and serious talk during winter break, we set up some ground rules with our daughter. For second semester she was officially on "academic probabtion" with the university and was in jeopardy of being kicked out of college if she had another bad semester.

We made some conditions that she had to agree to if she wanted to go back to college for second semester. This was going to be A LOT of work on my part as mom, and it was going to mean her trusting me with access to her college life...but we both wanted desperately for her to be successful in college.

We also set her up with a college "resource binder" that had all sorts of documents in it that we created to help make things more structured for her so she could be successful. Some of the things that we included in this binder....

anxiety/depression signs
problem solving flowchart
grading expectations chart
class assignment recording pages
daily schedule (detailed down to every 5 minutes)
chart (I have a problem -- Who can help?)
Contact information for college resources
Appropriate greetings/interactions with others

She didn't use every aspect of this binder, but she found parts of it to be INCREDIBLY helpful! Especially the daily schedule. If you are interested in seeing the documents that we put together for her I would be happy to share.

You'll just have to click the link in the green box below and ask for permission to view.

Click to see - Our College Binder documents


daily/weekly schedule	We created a weekly schedule. With our help, our daughter created her own schedule to make sure that she had enough study time scheduled into her week for all of her classes. (During first semester...she didn't realize she actually had to study outside of assignments and classes).
monthly visits with Mom	I came down to her campus regularly to check up with her in person and see first hand how things were going. I visited twice during the first month, and then monthly after that. By early spring she was doing well enough, that we didn't feel the need to continue the monthly check ins.
Parents have full access to grades	She had to share all of her log in information with me so I had access to her online learning portal. I had access to see all of her class syllabus information, assignment work, and any messages she had received from her teachers. This seems intrucive, but I made sure to respect her boundaries and use this purely as an opportunity to nip problems in the butt before they affected her on a large scale.
Mom checks grades daily	Every morning, before I would leave for work, I would log on and check the assignments she had turned in for every class. If she had any missing assignments I would snap a picture of the computer screen and send it to her and ask if she was aware it was missing and if she had a plan to turn it in. I did this every morning....for the WHOLE semester! It was a lot of work, but it was the kind of accountability she needed to stay on track.
Weekly counseling sessions	She had access to the free counseling sessions that the university offered, but was not using it. We made her agree to meet with her counselor at least bi-weekly, which she agreed to...but scheduling issues made it more typical that the would meet monthly with her counselor.
TRIO appointments	She had to agree to use the tutors at the TRIO center as well as meet with her advisor weekly to go over upcoming assignments and make a plan. She did this regularly, and I think this was a huge contribution to her success during second semester.

June (Relief)

After all of that heartbreak in December, and all of the incredibly hard work during second semester....the tides turned. Our daughter not only did well....she excelled academically! We knew she had the acadmic ability to do well in college, now we were finally seeing her full potentional.


Hard work paid off	Our daughter worked her way off academic probation......and straight on to the DEAN's LIST with her awesome grades for second semester. Talk about a turn around! We knew she had the potentional....now she did too.
collect HS scholarship	She had received a small scholarship in high school that was able to be accepted once fall semester grades were turned in. Well, after my daughter's acadmic struggles during first semester, she was too embarrassed to pick up her scholarship over winter break. But, once she turned things around and ended up on the Dean's LIST, she felt that she had earned the right to pick up her scholarship, which saved her some money for the upcoming second year of school.
Summer job	Now it was time for our daughter to start her summer job and enjoy the next few months of summer before she started her second year of college.

After all of this hard work during second semester we were incredibly PROUD of our daughter and excited to see what her second year of college would hold. We mistakenly thought that the tough year was behind us and that it would be smoother sailing for next year.

We quickly learned that this is going to be a long journey with many learning curves. But that will be a story for year 2 of Autism in College.