Playing by the Rules: Self-Advocacy in College for Students on the Spectrum

You would think we would know how to play Adventures in Community College Land by now. Maybe not.

It's a tricky one, this game--a live action role-playing, Dungeons and Dragonish venture, seemingly without any rules. All the players--ever changing--are improvising. I feel for them (a little). They've had too little experience with a family like ours, with students like ours. But, one in 68, people! That means a fair number of those are going to end up on your doorsteps, Community Colleges! 

But, as much as I may empathize with their issues, I feel worse for my children. In the four years FF, now 22, has been at our local community college, there have been four different directors of disability services. That's a problem. We're fortunate in that the current director DOES understand the rules and has stepped up to the plate for FF. Several times. I wish she didn't need to do so. 

Case in point. This semester FF is taking two classes, an English class with fairly extensive (for him) reading and writing requirements. Six novels, two papers, weekly discussion posts, two oral presentations, essay exams, and attendance at out-of-class events. He's also taking a safety course, a more job-based course that's a pre-requisite for taking any other of the college's courses involving this particular career. It's an information-based two-credit course requiring two short research papers, in-class quizzes, and several multiple choice tests. 

Guess which one is giving him conniptions?  Yep, that what-should-have-been-easy-for-him, two-credit safety class. 

I've told you all before about his severe dysgraphia, a condition characterized by extremely poor fine motor skills and processing that impacts his writing. It's taken us years to help the game players understand what this means and to negotiate appropriate accommodations (not modifications) for him: extra time on tests, which are taken in the testing center; use of a calculator for math; and the use of Dragon dictation for papers and written essays tests. 

The first test in the safety course was 150 questions long and was adminstered, per usual, in the testing center where FF used a Scantron answer sheet. These aren't new to him. I think what was new was just the sheer length of the test. The instructor contacted me (he knows that FF has signed a FRPA release, and we've encouraged him to let us know if there are problems) about the fact that FF's test could not be scanned because his marks weren't contained in the itty bitty bubbles. 

Disability services director steps in. New accommodation needed. From now on, FF will circle his answers directly on the test itself and will not use the Scantron form. FF signs off on the the accommodation form, gives copy to instructor who also signs off. Armed with a bulleted list, FF then proceeds to testing center the following week (in person, mind you, because students needing accommodations can not make online reservations to take tests--although everyone else can. This involves yet another trip out to campus in the Mom Taxi) to set up an appointment to take the remaining five tests for the two-credit safety class. Testing center administrator informs FF (I'm waiting in the wings--this is his deal) that he will need a seat registration and will need to pay an additional $37 per test. I hear him say "What's a seat registration?" Five seconds later I get called in to help with another negotiation. 

Surely, that can't be right. Students with disabilities who need a non-Scantron testing accommodation will need to pay for that?? Yep. Once again the director of disability services steps back in and we all troop back up to the testing center to negotiate another arrangement. She works it out: FF will now circle the answers on the testing sheet; the director of disability services will transfer his answers to a Scantron form; the testing center administrator will proofread the transfer marks and will then submit the Scantron answer sheet. He will not need to pay for an additional "seat registration," whatever that is. 

But chutes and ladders continues. This week I get another email from the instructor. The next test is an association certification. We knew this. The association, however, has decided it cannot accept a Scantron accommodation of this type. Really?? He says they're working it out, but "they're in control" on this one. I say great; we'll wait to see what they say. But that's not what I'm thinking. You don't want to know what I'm thinking. I point out--very nicely so far--that there are indeed rules for this game. Then I quote chapter and verse from the U.S. Department of Justice's website on the American with Disabilities Act dealing with accommodations in testing. The part under the heading "What Are Testing Accommodations?" that lists as an acceptable accommodation: 

• Scribes to transfer answers to Scantron bubble sheets or record dictated notes and essays;

Whaddaya know? There ARE rules to this game!

Meanwhile, the very nice director of disability services contacts me to say that they're awaiting a decision from the association, but that even if the accommodation is disallowed, the office of disability student services will pay for a seat registration. The point is, however, THEY SHOULDN'T HAVE TO DO THIS.

And there's a point two (of course there is). It's the self-advocacy issue. I don't want this to scare off those parents of high school students on the spectrum who, like FF, want to participate in postsecondary education. I just want them to be prepared for the negotiations, continued involvement, and attitude jousting they may need to be engaged in throughout their own Adventures in Community College Land. 

There are people who will tell you that if a student doesn't have the self-advocacy skills, they shouldn't be attending college. I think they're wrong. And I think it gives short shrift to those students who may have many strengths and talents even though self-advocacy may not be among them. We don't need to be sending these kids back to square one just as they're beginning to take their turn in the game.

I've read all the recommendations, lists, and charts that will tell you that postsecondary students need to be able to self advocate. I agree: that would be ideal. But it's not the reality for many of our 18-year-old higher (highish?) functioning high school graduates. Lack of appropriate self-advocacy skills can be, in fact, a part of their disability. This is, after all, a developmental disability, and that's one of the skills yet-to-be-developed in our young adults. 

Community colleges can be extremely helpful for students like FF. Moreover, higher functioning ASD students often fall in that dreaded gap (in some cases a chasm). They may be leaving school with a general diploma but not a higher level diploma (Hoosier parents, for more on the current rules of the Diploma Game, check out Indiana Diploma Decisions.) That means these students are not eligible for a university program, but because of that general diploma, they're also not eligible for most existing community transition programs. Community college may be their only opportunity for continued contact with same-age peers, for academic enrichment, and for job skills development that just might get them a job with more than four hours a week earning $7.25 an hour, or worse, subminimum wage in a sheltered workshop where they truly do not belong. And community colleges can give our students a few more years to learn those all-important advocacy skills. 

But it only works if community colleges understand and can apply principles of universal design in their classrrooms. If they abide by ADA law. If they work to welcome and include students with disabilities. If they do the research and learn how other postsecondary programs around the country are providing supports to their students. If they train and guide their instructors in the importance and use of those supports (meaning it's not optional, dangnabit!) And if they begin working with state VR programs and local disability service providers to help students with career development, short-term work exposure, internships, and part-time jobs. 

If we, as parents, as elected officials, as administrators, as a society, really expect these young adults of ours to leave a community college program with more than just a piece of paper, more than just a ticket back to Mom and Dad's couch and an all-day video game/YouTube watching/internet searching day, we need to go to back to college and play by the rules. 

[Update: The association sent an email via secure mail (requiring FF to create a new account and a new password) notifying him that he will be "allowed" to use his accommodations, but that if the forms are not sent in appropriately by the testing proctor, he will need to retake the test at his or the proctor's expense.]

An Asperger's Diagnosis in College: Girl Interrupted

We pretty much knew that son Fickle Fan, diagnosed with mild-to-moderate autism at the age of 3 1/2, would need some long-term supports and parental paving-of-the-way to successfully, safely progress from toddler to adult. But we haven't talked much about what happens when your student isn't actually identified as being on the spectrum until after high school. 

Enter Daughter Dearest. In her case, that happened after a disasterous first semester at her very nice, Midwestern private school of choice. This is the school that gave her a helpful scholarship and was pleased that she was interested in biology and had the ACT scores and transcripts to back it up. 

This is DD's story. It's a cautionary tale for families, for colleges, for high school guidance counselors, and for students themselves whose lives start coming apart at the seams after Mom and Dad unload the van and drive into the distance. 

If you've been a T in T reader for awhile, you'll remember that DD was diagnosed with obsessive compulsive disorder at age 11. For the most part it was under control with meds, though we had concerns on multiple fronts, especially in high school. But we were living in a smallish, rural community. There was not a pediatric psychiatrist or even a therapist familiar with OCD in young girls within a three hour drive of our home.  

The meds-only treatment approach, however, probably masked DD's Asperger's symptoms. Plus, it's common for girls on the spectrum to be missed--they tend to be somewhat more social than boys, don't always have some of the other obvious signs that boys on the spectrum have, and have learned to get by. And that's the problem. It's not until somewhere between middle school and college that many girls on the spectrum are identified, especially if they're higher functioning. 

But it's true that I had those ongoing concerns. We always said that DD leaned into the spectrum. Somewhat awkward social skills. Few friends; some years none at all. Voracious reader of fantasy/dragon literature (but couldn't seem to "grow out" of or branch into any other genre). Very quiet in the classroom, but capable of carrying out a loud, bombastic comedic role onstage. Pacing and self-talking (acting out scenes from her life) in her room (but not in public). Inability to prioritize. Inability to organize. Little interest in learning life skills. Despite her OCD and typical germaphobe issues, her room would've been a contender for an episode of "Hoarders." 

Big red flags began waving her senior year. We even had discussions about delaying her entrance for a semester or even a year. So if you're wondering, even just a little, here's what you need to know:

Lesson #1: If you have a student with "tendencies," get them tested by a reputable professional before they leave high school. It is unlikely that the school system will pay for this ("She's doing fine; she's on the honor roll.") so hopefully it will be covered by your insurance. In our case it was not. Find someone who has expertise testing adolescents on the spectrum and have them do a detailed analysis of your child's strengths and challenges. This was a huge eye-opener for us and helped DD and us better understand what she needed in terms of support. The tests also clued us in (duh!) to her high IQ. If we'd had this information about her particular challenges and the areas at which she excels, we might have been able to put her on a better path before she was left to fend for herself at lovely Midwestern college. As it was, we--DD, her psychiatrist, a therapist, and her parents--sputtered around for at least a year after the disastrous semester before we pursued the testing (or even knew she should be tested!). So diagnosis and comes-the-dawn moment took place at age 20.

Keep in mind that if your student begins having problems in college, it may be difficult to get them the help they need on campus. For many neurotypical students it's a real challenge to walk into a campus mental health center and talk with someone. If your student is on the spectrum, it may be even tougher for he or she to 1) recognize they have a problem, 2) make the call or walk into a counseling or campus mental health center to make an appointment and 3) actually TALK to someone about what's happening. And many college counseling or mental health centers are staffed by psychology grad students. Again, your student needs to be evaluated by a qualified professional who has experience adminstering a variety of intelligence tests and other evaluative instruments AND who is comfortable working with adolescents. 

Lesson #2: Depression--all too common among adolescents on the spectrum-- can be dangerous and life changing. Learn the signs.  After about a month at lovely Midwestern college, we saw problems arising. Lack of communication was number one on the list. She began avoiding texts, emails, and phone calls. It's not really worth trying to figure out what triggered the depression because by that time there were a number of contributing factors: a very tough schedule, roommates who made her feel awkward, DD's own inability to seek out help, and a pharmacy that didn't deliver her meds to the campus pharmacy as they were supposed to. Co-occuring conditions--depression, bi-polar disorder and excessive anxiety, among them--frequently arise in students on the spectrum during their adolescence or young adult years. It's extremely important to monitor our kids during these years (which may be tough to do from afar) and get treatment for them when they need it. 

Lesson #3: Insist on a private dorm room. I had pre-discussions with lovely Midwestern college about one of my major concerns: overcrowded dorm rooms. It's not uncommon these days to pack three or more freshman into a dorm room the size of a large walk in closet, something that was over-the-top stressful for DD, who's always had her own room. I had suggested a private room, which would have cost more, but we would have made it happen. DD, though, didn't think she'd have a problem and didn't want to draw attention to herself by making unusual demands. As a result, DD had little privacy and no chance to engage in the little self-calming rituals that help her get through each day. Private dorm rooms give our students needed sanctuary. By the time life in the dorm became intolerable DD was too embarrased to say anything, or talk to her RA about moving to another room, and she refused to let us intervene. It was only after we brought her home in December that we found out she'd been hiding out at the library or in the lounge down the hall until the wee hours of the mornings so that she wouldn't have to interact with her roommates, that she'd been physicaly ill for awhile, and that she had not been taking her medications regularly for weeks.

The alternative to the private dorm room, of course, is to live at home and commute to a nearby university or community college. Add in transportation, social isolation challenges, and parental dependence, accordingly and adjust as needed.

Lesson #4: Have your student sign a release of information form. At the ripe old age of 18, your student is an independent young adult and will be treated as such by the college they're attending. You, therefore, will not be entitled to any, ANY, information about your student. Doesn't matter if you pay the bills. Report cards, notices, tickets, any other communications will be delivered to your student who does not need to share them with you. The school is not actually allowed to give you any information unless your student has signed a release form. DD became quite good at shielding grades and progess (or lack thereof) from us, which only increased her shame and embarrasment and our inability to see what was really happening. After several semesters of this at both lovely Midwestern college and local community college, she agreed to sign the release form and knew that we would actually call the college retention office to check on her status in her classes. Which brings us to...

Lesson #5: For some of us, helicopter parenting is a life-saving necessity. Don't let the school, your student, or other parents make you feel ashamed of what you have to do to help your child on the spectrum. Unless they, too, have a child with HFA or Asperger's and have been where you are, they just won't get it. College is extremely important for many of our higher functioning students, but some just don't have all the skills in place yet to do it on their own. That doesn't mean they shouldn't be allowed to participate in postsecondary ed; it just means you may need to find the right supports to make it happen for them. That said, you can't overdo it. Your child has to learn life skills that will help he or she become more independent, so you'll gradually need to back off and take away the scaffolding. For some of us, that's a slow process; for others it's not as difficult. With the help of a therapist, find what works for you. 

Lesson #6: "Four years and out" does NOT necessarily apply to spectrum students. Thanks to mountains of student debt, universities around the country are now trying to encourage (read "push") students to complete their bachelor's degrees in four years (or even less--with summer tuition discounts for full-time students)--not that it's really helping, given rising tuition, the doubling of interest rates, and increasing credit demands for some majors. Ahem. (Okay, so I side-step now and then.) The point is that many, many students with higher functioning autism need to take a lighter schedule. One or two classes per semester will help them begin to understand their schedule and academic demands. Build on that as appropriate. Stop comparing your student to his peers who are taking 18 honors-level credits a semester. 


Lesson #7: A volunteer position or part-time job will help students build social and resume skills. This was tough at first for DD. After moving back home and trying to put humpty-dumpty's pieces back in place, DD was taking classes, but going nowhere and doing absolutely nothing else that didn't involve the spine of a fantasy novel or the glow of a computer screen. But because of her challenges and sub-basement level self-esteem, she didn't think she was capable of getting a job. At that point we turned to VR and a local employment provider, which helped her get her foot in the door. A year and a half later, she's working 12-15 hours a week at a new job (one she got on her own), learning new skills. I've heard of many students on the spectrum who graduate with a college degree and, years later, still don't have a job or are underemployed and undervalued. I think it's essential for our students to build job skills and explore career paths while they're in college. They need to be able to connect the dots to employment, or that degree may be nothing more than wall art.



So where does that bring DD? Leagues further than where she was three years ago, but still working on things. In addition to her job, she's now taken enough courses to apply for a transfer to another lovely Midwestern university, albeit one that's much closer to home. She now understands what she needs to thrive academically. She can get herself out of bed when she needs to (and oh you better believe that was a huge accomplishment). She drives, handles her own meds and refills, pays for her own gas and clothes, does her own laundry. All good. And she and her new therapist chink away at her OCD and Aspie challenges. More financial independence and responsibility, setting long-term goals for herself, and finding a career that jives with her interests are a few things on the to-do list. So, one more lesson...

Lesson #8: Setbacks are a part of the process. None of this is easy. There were times when we were at a complete loss and getting nowhere. But because students like DD can stumble and fall repeatedly, they can carry around a crushing amount of shame. It's really important to assure students that a bad semester, an unwritten paper, an inability to meet and talk with a professor does not mean permanent failure. People get second chances in life. Our students get multiple chances to pick themselves up (with help) and try, try, try again. 

If you're thinking about college for your student, there are an increasing number of programs with built in supports for students with high functioning autism. Warning: most are extremely expensive, but if that's not an issue for you, here are a few "thinking about it" sites to get you started. 

"Preparing for College: Tips for Students with HFA/Asperger's Syndrome"
Marshall University, WV--the College Program for Students with Asperger's 
College Internship Program
College Living Experience
AHEADD: Achieving in Higer Education

Top Five Things My Son with High Functioning Autism Needs to Succeed in College

Before you read this post, please be aware that I do understand the differences between entitlement to services and supports in k-12 education for students with disabilities vs. eligibility for accommodations in college.  (For those of you who are parents of younger children or who don't dwell in our world on regular basis, here are the basics on that.) Basically, students in k-12--by law--are accorded a number of supports and services that help make school more accessible for them. In college, not so much. Postsecondary education requires that students be able to meet the requirements all other students must meet and that they advocate for themselves for accommodations (like extra time on tests or the use of assistive technology in the classroom that could help with essays or notetaking). 

Trouble is, "advocating for themselves" is one of the core challenges that many, if not most, students with autism (and their families) struggle with on a daily basis. Comes with the territory. So even if they've already passed the entrance exams, have a good grade point, and are capable of understanding college-level material, if they can't walk into the office of disability services and ask for the specific services that would help them, they're at a distinct disadvantage. 

In order for him to be successful in college, though, our son FF needs more than simple accommodations. And he's not alone. That "one-in-88" diagnosis so many of us in the autism community are now shouting from whatever soapbox we can stand on, also means that there are a number of students now graduating from our nation's high schools who walk out the door their senior year with a diploma and who still have Asperger's or high functioning autism. Surprise! They weren't cured. (Yes, I'm joking.) 

Trouble is, we have a little perfect storm brewing on the horizon: increasing numbers of students with autism entering college--primarily community colleges--and faculty, staff and administrators, including those in offices of disability services, who are woefully unprepared for these students. I suspect many of those professionals don't necessarily feel the need to be prepared. After all, the onus is now on the student; it's the student's responsibility to acclimate to college life, perform well academically, and practice self-determination skills. While that's true in part, I think it's tremendously short-sighted and sets these students (and colleges) up for frustration and failure. It's a big loss, since so many of these students have so much to contribute. 

It's true, though, that just as in the neurotypical world, not all students with autism are savants and geniuses. Many of them, FF included, fall into that capable-but-not-excelling, middle-of-the-road category (at least right now). You can debate whether or not he deserves to be in college; he and thousands of other Indiana community college freshman are in the same boat, floating on a sea of okay grades and positive end-of-course assessment scores, but for a variety of reasons, still in the community college harbor and not out on the state college or other 4-year college ocean. The point is that he recognizes college can give him opportunities--better jobs and a possible career, certainly, but more importantly to him right now, a chance to be with "regular" kids his age. College, more than anything, will allow him to continue to be in the real world with his peers, at least for awhile longer. Look at that sans the autism diagnosis and isn't that really what community college is all about?  

So here's my top five list of what FF needs to be successful in college:

1. Awareness and Encouragement. Staff members who will welcome him, say hi in the hallways, recruit him into a club, ask for his input or help, laugh with him, etc. People who actually want him there and appreciate his interest in economics or his ability to tell you the Academy Award winners and nominees for 2007. His anxieties are pretty high and he feels like he doesn't fit in anywhere. If a staff member on campus can build a rapport with him, it'll help a great deal. Training for key staff in the characteristics of high functioning autism and Asperger's as well as effective supports would be extremely appreciated. 

2. Peer mentoring. Students who are willing to take a student with disabilities on a campus tour, have lunch, meet after classes to hang out, go to a movie, attend a meeting with a professor for moral support, send occasional "how's-it-going?" emails, etc. A friendly familiar face in the hallway can be so crucial, but in community colleges that are most often commuter schools, students come and go. They don't always stick around to socialize. It would go a long way if student retention and/or disability student offices could actively recruit students--males as well as females, please!--to help students with disabilities fit in to campus life. 

3. Tutoring. Most colleges have tutoring offices. In our case, however, it's a drop-in tutoring center. We need tutors who understand the executive function and fine motor challenges of students with autism, who often need help keeping track of due dates, assignments, meetings and who struggle mightily with any kind of writing. Ongoing tutor relationships are usually better in that situation--not just whoever's on duty in the center that day. Screening and recruiting good tutors is a real challenge for families. Recommendations from the disability student office would be very helpful. 

4.  Transportation. Very few students with autism drive. I've been taking him to classes these first few weeks, but it's not an ideal situation. My work schedule is disrupted and he'd be much happier if he were going with a peer instead of (disgusted sigh!) a parent. I so appreciate that our local community college offers free bus passes for students. But in our case, campus is across town, two bus rides away. I'm not sure he can actually navigate that, but in any case, FF will need bus training and/or someone to drive him back and forth. Again, assistance from the disability student office would be very helpful. 

5. Assistive technology--in the classroom and at home. FF has a laptop, an iPod and a tablet (though not an iPad). What he doesn't have is training on how to use those things to his advantage, particularly in college. He needs an assistive tech evaluation, recommendations on apps and software that will best support him, and training on how to use those things. And NOT training from parents who are hopelessly, notoriously uncool. For the sake of peace on the planet, this kind of assistance needs to come from a trained third party.  The folks staffing the office of disability services also need to be aware of what works and what campus, local and state resources are available for students. And just FYI, when you're handing a student a stack of lined carbonless paper for notetaking, I would suggest you need a tech update.

For now, I'm going to side-step the question of who should pay for these services. (Encouragement, btw, isn't expensive.) I'd just like the services to be available to students with disabilities and their families making the leap from high school to college. As it is now, families are scrambling to cobble together their own supports. Yes, it's expensive, but it's also time consuming. In too many cases (and I'd like to see some real stats here) I'm guessing there are a number of adolescents with autism at home on the couch watching reruns of SpongeBob or bagging groceries at their local Kroger who could benefit from a college experience.

And, obviously, the list above isn't one-size-fits-all. It would be nice if transition teams could put together a list of needed supports and services and help families learn how to access them BEFORE their student walks into their first college course. A closer relationship between high school guidance counselors who staff those Transition IEP teams and the director of the office of disability services at the local community college could also pave the path from door to door. I'm sure they could learn from each other.

Families out there who've been down this road: How did you make it work?  Or, if your student wasn't successful in community college, why? What would have helped him or her?  Are there other things that should be added to the list above? I'd love to see Indiana start an online Ivy Tech "user group" for families of students with autism and other disabilities, so that families can learn from each other. Is there such a thing?