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.]

Testing for Speed

We hit a couple of  hot buttons tonight at the dinner table: 1) The infernal need for speed in standardized testing, and 2) the tortures of testing for students with Obsessive Compulsive Disorder. 

Today, son Fickle Fan completed Day One of his final shot at the Algebra End-of-Course Assessment (passing is required for an Indiana general diploma), and for the first time he's using a common test-taking strategy devised by his tutor to help him answer more questions. So that's what brought the subject up for discussion, but, as you can imagine, it's my OCD-Aspie Daughter Dearest that has A LOT to say about the issue. 


DD despises timed testing. She believes--and I completely agree with her--that speed testing on math and science tests is a completely male-initiated venture. We not-so-fondly recalled her 2nd grade timed multiplication tests. Students were not allowed to move on to other areas of math until they could flawlessly pass the timed test--30 problems in 3 minutes. That gave her 6 seconds per problem. Each time she would attempt the test, she would come home with half the problems completed--they were all correct, of course, but nevertheless, she was not permitted to learn any new material. After buckets of tears, I decided the test was ridiculous. Knowing that the teacher was giving out the very same copy of the test each time, I had DD memorize the 30 answers.  Next time she took the test, she just wrote down all the answers. Problem solved. Temporarily. 


This was five years before I realized that she had OCD. And 13 years before we began to suspect that Asperger's was also an issue. Long story short, we now know that DD is incredibly intelligent and excels at math--but NOT if she's working under the pressure of a clock. She has a much slower processing time than most people who also have her IQ.  


At dinner tonight her voice rose--it always does when she's passionate about an issue--when she described her frustration at standardized math and science tests, including her AP tests and the ACT. (She did very well on her ACT test, by the way; not so well on her chemistry AP.) "I knew all the answers, Mom. I just couldn't ever get all the problems finished."  


She went on to describe the agonies she goes through each time she reviews her answer sheet to detect patterns on the page, too many D answers in a row?, not enough As? "So then I'm sure I must've done something wrong, and I go through the test wondering where I messed up."


And then there's the issue of filling in the answer bubbles.  Is the oval filled in perfectly?  Maybe I've filled it in too dark.  I should erase that one and make it look better. That one is filled in uniformly. I need to fix that one too. Yikes!


It's painfully apparent now that DD should've had accommodations for extra time on tests and should have been coached in testing strategies to put her mind at ease. At the time, we had no idea. She was bright and wasn't the squeaky wheel in the family. Moreover, I don't know that she would have accepted accommodations then. She would have bristled at the very suggestion that she be treated any differently or be given any special consideration. (She confirms this.) Now, though, she understands the connection between her "issues" and her anxiety in a classroom and in testing situations, and that the accommodations are a must-have. 


If you're a parent of a student with a higher functioning autism spectrum disorder and/or OCD, be sure that your case conference team is listing accommodations needed for standardized testing. 


Also note that if your child received extended time for testing at school and both the disability and need for accommodations is documented by the school, your student may be able to use those accommodations during the ACT. Here's the ACT accommodations link for more information. The SAT also accepts accommodated testing for eligible students, but your student must first apply to the College Board. Talk to your guidance counselor about application requirements and procedures. Once a student is found eligible for accommodations on one of the College Board's tests, she/he does not need to apply for a second time. So if your student receives accommodations for the PSAT/NMSQT, he/she will still be eligible when it comes time to take the SAT. Here's the College Board's link to information on SAT accommodations.


And let's all put away our stopwatches, shall we?