I don’t think most people have a clear understanding of what effective academic support for autistic university students looks like. Even well-informed neurotypical people can only imagine what autistic students experience and what concrete assistance can bridge the gap between what is expected of university students and what particular autistic students struggle with. Academic accommodations typically include disability services like extra time on tests, an alternate testing site, and note taking apps. These are helpful but barely scratch the surface of what autistic students need in order to remove the barriers and achieve their full academic and educational potential during college. (In addition, the process of setting them up and utilizing them consistently often outweighs an autistic student’s executive functioning skills.) The day-to-day, one-on-one academic support that autistic students need in order to clear their path so they can engage in the critical thinking and actual learning is more elaborate than university disability services and individual professors know or can provide.
I am an autistic person myself with decades of experience in academic support in many contexts. I currently provide professional academic support for autistic university students on an external basis, that is to say I don’t work for a university as part of a support program. I work for individual students as a type of personal assistant to organize and troubleshoot. I don’t tutor in specific subjects nor do I do any of the writing or other work that must be turned in. Obviously, I don’t take the tests or quizzes for them. I help them figure out what they need to do when and then actually get it done. This week I supported an autistic college student on a project that makes an interesting case study to elucidate the types of academic support that could be necessary for some autistic university students.
Let’s get one ubiquitous point out of the way up front. “If you’ve met one autistic person, you’ve met one autistic person.” “Autism is a broad spectrum of unlimited possible combinations and no two autistic people are the same.” No program that is one-size-fits-autism is going to be comprehensive and customized enough to be effective. Every academic support for autistic students has to be tailored to the specific roadblocks experienced by individuals, agile enough to continue evolving as the autistic student develops in their college career and encounters different challenges, and streamlined enough not to add more time or stress because all college students are already pushed to their time and stress limits and autistic students tend to need more time to accomplish every task and are already functioning at a higher stress level than most neurotypical people can imagine.
Some universities have, or are developing, specific programs to support their growing number of autistic students, a few of them included in tuition but most of them incurring significant additional costs. I’m a big fan because every effort and every program for academic support for autistic students is better than nothing at all. Most of them identify primarily the social skills autistic students may wish to develop in order to feel accepted by peers and professors. Don’t get me wrong, this can be important, but I don’t think it’s the most critical academic support need for most autistic students. Many of them promise to develop job-oriented skills to help with the transition from college to career – also important but immaterial if you can’t succeed in enough individual classes to maintain your funding and earn your degree. Some of them offer concrete assistance in daily living skills like personal hygiene, laundry, sleep schedules, eating what is available in the dining hall when it is available and not when they’re hungry, etc., that parents of neurotypical students take for granted but parents of autistic students know can make or break that first year. A few of them even offer assistance with “executive functioning” by which they mean help with time management strategies. This is in fact one of the most urgent needs of many autistic university students, but it goes far beyond what a few workshops or even a weekly coaching session to plan the daily work load can hope to achieve.
My client, let’s call him George, is a 19 year old sophomore with a startlingly high IQ at a private liberal arts college in the United States. By the end of this fourth semester in college, he will have completed all of his general education requirements, half of his major and 85% of his minor, and two 300-level multidisciplinary honors seminars with significant research and writing projects. He has a very high GPA across his four semesters, is in the university’s honors program, and regularly performs and techs for mainstage theatre productions. He depends upon structured but also flexible daily support in order to free him to accomplish these achievements.
This week George had to finish up a multi-week art project in a design class by mounting all of his drawings in order to display them for evaluation by the professor and peers. Studio art is not one of George’s strong suits but this course is required for his minor. I engage with a lot of university syllabi in my line of work and I’ve been impressed with this professor and the structure of her class. It’s a 100 level course and she makes it accessible to students who may not have a strong background in design or art. She breaks big projects into smaller, achievable tasks and she provides clear step-by-step instructions for each task. This is important to note for this case study because even in a course like this, George can’t succeed independently and needs individualized support. The stress level and anxiety George experiences when faced with something unfamiliar blocks him from being able to troubleshoot the problem of not knowing what to do and how to do it. He needs outside help to work the problem. It turns out that “common sense” isn’t actually common and that “figuring it out” takes intuitiveness that autistic people often lack.
The steps for the assignment from the syllabus.
George and I had assigned this task to Friday on his weekly schedule. Anticipating that this would be challenging, even though it wasn’t the first project he was finishing for this class so we had already laid a strong foundation by exploring the space and resources, we made sure this was the only thing he had to accomplish that day other than attending one class and getting lunch and dinner on time. On Friday afternoon, he conscientiously walked to the studio where the equipment and materials he’d need were located. He gathered the drawings stored there which he had worked on during class time over the last few weeks. He read the instructions for the assignment again. He chose his top 10 drawings based on the grading criteria. Then he sat there staring at everything, unsure how to start.
George and I touch base by text every morning, going over the assignments for the day and strategizing when to tackle each one. Every day I encourage him to reach out when he hits walls and needs help getting started again. I was very impressed by George’s ability to recognize his need and reach out for help at this point. George understands that when he doesn’t know what to do, he tends to shut down rather than bulldog his way forward. He understands that avoidance techniques waste time and running out of time to do work at his own pace increases stress and lowers grades and learning. It can be hard for autistic people to ask for help and we put a lot of effort into building trust so he is confident in reaching out.
I wasn’t surprised by the text: “Hey, I think I’m going to need some help getting started.” I dropped everything and texted him back: “Sure, why don’t you give me a call?” (Actually, at the time I was making Brazilian brigadeiros to take to my child’s school event, so I asked my mother to continue stirring the pot so we didn’t burn the fudge while I answered the FaceTime call.) We talked through the assignment rubric again and what he had already accomplished. He showed me on his phone camera which drawings he had chosen and how he had laid them out on a big table. We talked about what had stopped him. He didn’t know what a kneadable eraser was, where to find it, or how to use it. So we walked together (him on his feet and me on his phone) to the supply room and he scanned the shelves while I described what he was looking for: “probably grey, like a small wad of gum, it sort of looks like modeling clay or Playdoh”. He found one! I told him to squish it a bit and experience it. He wasn’t a fan of how it felt or smelled but was willing to tolerate it. I suggested he experiment with it on one of his drawings that wasn’t in his final ten for the project. I talked him through how he could shape it or break it off and put it back together. I talked him through different motions to try for rubbing and how to blow off any residue rather than rubbing it and thereby risking more smudges. When he thought he was ready, I encouraged him to try it out on one of his Top Ten. At that point, he felt he could work on the other nine drawings on his own and call me back when he needed more help.
It’s worth noting that along with autism, George has Tourette syndrome, and the two neurological conditions contribute to dyspraxia so that his fine motor skills and coordination aren’t what you’d expect from someone his age. The chalk drawing itself had presented challenges and now the erasing was, too. I knew we were looking ahead at “trim”, “cut”, and “glue” in the next few steps and these are mountainous challenges for George in a way they wouldn’t be for other university students. I was waiting for the next call.
“Trim the background to each of your top 10 drawings to a neat geometric.” George understood what each word meant, but he didn’t have a frame of reference for what this would look like. How much space should he leave around his drawing? Was he literally cutting it along the edge of the picture? What made it geometric? Did that mean all the lines needed to be straight or could they be curved? Should he google that? Did the geometric shapes need to be equilateral? Did he have to choose one geometric shape for all ten or a different one for each drawing? I didn’t know the professor’s requirements so we discussed possibilities and weighed artistic merit against practical considerations and together reached a consensus of “our best guess”. You see, to stop and ask the professor would waste more time than he could spare in his semester. He’d either have to send an email that likely wouldn’t be answered until Monday or he’d have to wait and ask in class on Monday. Either way, he’d need to put this project on hold and pick it up next week, which would then conflict with other assignments. He’d need to try to accomplish a different academic assignment with his Friday time slot, and flexibility and pivoting aren’t something most autistic people are comfortable with. This kind of disruption could send him into a spiral and have far reaching consequences for his workload and classes so we needed to make the most informed decision we could and just push forward. Pushing forward in the face of uncertainty also isn’t a strong autistic skill.
The next challenge was “trim”. With what? Scissors in George’s hands weren’t going to produce straight, smooth lines for geometric shapes. I could talk him through how to use a ruler to draw straight lines but ultimately scissor skills were going to limit precision. I suggested we go back to the supply room and look for a paper guillotine. I described what I thought he might be looking for: a large wooden square or rectangle with a raisable arm with a sharp blade along the right side. Lo and behold! He found one! I talked him through how to put his phone back in his pocket and use both hands to carry the paper cutter back to the big table. He needed to put it down so he could clear a space; there were a lot of decisions in where to put the drawings to make space for the guillotine. When it was all situated, I had him stop and listen to a quick tutorial so he wouldn’t chop a finger off trying to learn this new piece of equipment by himself. Using a new piece of equipment like this isn’t as intuitive for an autistic person as neurotypical people might presume. I explained how you could line the paper up against the top and use it as a guide and how to raise and lower the guillotine arm to cut the paper. A few simple rules, “keep your right hand on the handle at all times”, “use your left hand to move the paper but never let your fingers cross that line”, kept his fingers in tact. As before, I recommended he find a piece of scrap paper and make a few trial cuts before beginning to cut his drawings. He found the textured vibration and the sound of the paper cutting to be quite satisfying.
One of George’s earlier frustrations had been that some of his drawings had more than just smudges around the edges and it was more than he could tidy up with the kneadable eraser. So we strategized how he could design his geometric shapes to crop off those areas. He didn’t quite get what I was trying to explain so I took a screenshot of one of his drawings and marked it on my phone and sent him the image and he could see what I meant. Nevertheless, we still had to discuss that my lines didn’t account for how you had to cut all the way through, not stop like my lines did, and that you had to strategize which cuts to make first because the paper guillotine wasn’t large enough for the paper to fit through in every direction. When George was ready to trim the rest of the drawings on his own, we ended the phone call with assurances that we’d work through the next step together, too.
My markings on a photograph of one of George’s drawings to illustrate how he could place his cuts to create an artistic geometric that trimmed away the parts he didn’t want included in his piece.
When George called back, we had to repeat the process of looking for black poster board in the supply room. Then we had to discuss the 1 to 1 1/2 inch margins. Was he supposed to create a black backing that was the same geometric shape as he had trimmed each drawing to with exactly an inch on all sides at each angle? Or was he supposed to create square or rectangles that were big enough to leave at least an inch from the closest points of his geometrically shaped drawings? Again we didn’t know the answers to all the questions and couldn’t afford to suspend the work session to consult the professor so we talked it through and made our best guess, which is very uncomfortable for a lot of autistic people. It’s a very common autistic experience to need to gather information through copious questions in order to build the big picture from the bottom up before being able to engage in the task. However, in no way could he have looked ahead at this assignment during class on Wednesday and anticipate each question he’d have in order to ask ahead of time. That kind of executive functioning eludes many autistic people. It’s also unrealistic for a professor to be able to anticipate every autistic question that will arise which is why it’s important for anyone working with an autistic person to be available and patient for the whole range of questions each and every time.
By this time, George was beginning to gain some confidence so we moved on to the next step – glueing. Back to the supply room we went with me describing what a glue stick would look like. He found them in a bin labeled “glue sticks” and brought the whole bin back out to the table. He opened the bin and chose a glue stick and we talked through the process, like why you put glue on your picture rather than the backing (“because the backing is bigger and you’d have excess glue spilling out from under your picture”), from taking the lid off (“sometimes they twist off but usually they just pull off”) to turning your drawing over (“be sure to glue the back side, not the front side”) and holding it in place in the middle with the index finger of your left hand while you use your right hand to draw a thin line of glue around the edges and maybe an X in the middle (this process is important to avoid getting glue on the hands – it had been stressful during the earlier stage of drawing to feel the chalk all over his hands). We went over why the professor’s description of using another piece of paper to press the two pieces together to avoid adding more smudges that would need the kneadable eraser again was an important point. When he’d worked through cutting one black backing and gluing one picture to it, I left him to the other nine and told him to call me back when he needed me.
I texted him about an hour later, reminding him that the dining hall closes early on Fridays so he only had about 45 minutes to get over there and eat or he’d miss his cheese pizza and go hungry. He agreed to leave everything where it was and return after he had eaten. That interruption is challenging for many autistic people so this was a triumph of intellect, rather than hunger. Many autistic people struggle to recognize that they’re getting hungry until it’s quite the crisis. (Previously George and I had worked together to problem solve when he had inadvertently missed dinner. His diet is very limited, like a lot of autistic people, and he was unfamiliar with other dining options on campus and what they might carry that was on his safe foods list.)
Our final communication of the night ended up being a text rather than a call. He struggles to hand write his name, but he understood those steps and had his own pencil on hand, so he didn’t need my help with that. He texted me a photograph of his 10 tidied, trimmed, and mounted drawings. His pride and satisfaction were delightful. He had worked on this for at least five hours that afternoon and evening and was exhausted from all of the uncertainty and decisions but he was proud of himself sticking with it and not allowing it to overwhelm him.
George’s top ten mounted drawings ready for presentation.
I’ve touched on many examples of how this assignment might present difficulties to autistic university students, whether because of general autistic tendencies or because of an individual student’s complex and spiky skill set and particular challenges. I’ve mentioned some reasons why even an excellent program for academic support for autistic university students will struggle to support each individual student as comprehensively as they may need. I’ve argued how professors, no matter how well trained and flexible they may be, couldn’t be expected to anticipate and provide for every need (and question) of every autistic college student. I’ve presented challenges that autistic people often face trying to access their accommodations and that includes individual and customized support available when they are actively encountering roadblocks. I’ve illustrated how this level and model of academic support for autistic university students can be effective even remotely, when the Professional Academic Support specialist can’t necessarily be on campus with the autistic college student. Perhaps you can even see past the events of this one evening to see how our success and achievement rested on a solid foundation of relationship-based trust built with consistency over our time working as a team.
I suspect many readers are looking for reassurance that this level of academic support might gradually become unnecessary as a college student develops their own independent executive functioning and time management skills over time and encounters an ever-increasing toolbox of experiences. I’d love to offer conclusive evidence and optimism that my clients outgrow their need for me, but my answer must be a solid “yes and no”. On the one hand, sure, George would be able to return to the same studio and repeat the same project, probably improving it each time, quite independently. However, his scissor skills aren’t likely to have improved. That’s physical and neurological. In addition, a lot of autistic people struggle to generalize a skill and apply it to different situations. Every variation in the assignment, supplies, location, professor, etc. will require analysis and synthesis of which elements can be directly transferred and which need refinement to be utilized and applied. This often requires academic support to plan how to tackle the project and to address each new unknown that is encountered.
George and I worked together last semester to structure the process of researching and writing a 22 page paper with a significant field study component. He wrote it over the span of the semester and earned an excellent grade on it. Some of the skills I modeled and he performed will transfer to the next paper and just like every other college student, George will get better and better at these huge assignments throughout his college career. Nevertheless, the neurology that makes it sometimes feel insurmountable to break down a gigantic project like this into manageable single-session two-hour tasks and order them into a dependable mechanism that will take many months to complete doesn’t change. Sure, George will learn some tips, tricks, and techniques from me, and will develop a process that can be applied to similar projects, but the ability for strategic planning, the capacity to self-regulate and self-motivate, the facility to not get exhausted by eternal masking and endless moment-to-moment intellectual discernment of the steps in every process from showering to navigating to class to asking a question – these don’t necessarily develop with experience. Autism is a life long condition and the challenges and struggles it presents don’t disappear or get overcome. Some autistic people may need a personal assistant throughout their entire career or may need one from time to time as they encounter new jobs or roles or projects or teams or managers. Is this really any different than so many professionals who require the assistance of a paid PA (personal assistant), secretary, or Administrative Assistant? Why would we consider it inappropriate for a college student to have this type of assistance and support that we accept as not only normal but actually a sign of a certain level of success in the business world?
I sometimes encounter pushback or judgment in my line of work. Comments like “don’t you think you’re doing too much” (or “babying” or “enabling”) and questions like “how is this person going to eventually do this without you?” or “don’t they just need to figure it out on their own like all the other students?” are frequent. I even hear “how is this fair to the other students who don’t have your help with organization and time management?” At heart, those are such incredibly ableist questions. We don’t see a person in a wheelchair and think that the goal is for them to learn how to navigate life and career without it. We don’t dump them out on the sidewalk and expect them to figure out how to get up those stairs. We don’t ask how that person using a wheelchair is fair to everyone who doesn’t need to. “Tough love” is not effective in the face of a disability that prohibits the skill set you want to see develop in your neuronormative world.
We don’t see a doctor or lawyer using the services of a Sign Language Interpreter and think that the goal is for the doctor or lawyer to learn to communicate on their own without the interpreter. Think of me like an autism interpreter – mediating the expectations and communication from the neurotypical majority to my client and then presenting their lived reality and acquired expertise back to that world. Go back and read the paragraph where I describe all of George’s achievements in his first two years of college. This guy is brilliant and whether he becomes the next Steven King or the next Mr. Keating, or the very first George, his contributions to the world are going to be significant. He might need a professional administrative/academic support person to keep him organized and on task enough to get there, and that’s ok. In fact, it’s a triumph.
by Zan Raynor, Professional Academic Support (PAS) specialist for ELLAS – Effective Learning and Logistics Academic Support
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