Sarah Henderson is a blogger, speaker, and university student studying math from the U.K. Henderson blogs at I Don’t Look Autistic on a variety of topics related to autism. Last week she discussed friendships, self-advocacy, and autism misconceptions. Below is a re-posting of a transcript that originally appeared on her website on July 20, 2021. It is reposted here with her permission.
Hello, I’m Sarah and I’m going to be talking to you today about how the assumption of incompetence often made towards autistic people both feeds into and is furthered by systematic barriers within higher education. I’ll then give some practical advice about how to get around these to “level the playing field” so to speak.
I want to mention at this point that I’m not an academic, nor do I work for a business. I’m about to go into my final year of an undergraduate Mathematics degree, but I am autistic, hence why I feel qualified to speak at this. For a really brief bit of background, I was diagnosed when I was 17, just about to go into my final year of sixth form. This means I completed all of mainstream education without knowing why I found certain areas so hard, and by the time I could get specialist help in year 13, I was about to turn 18 and so in a strange place between the adult and the child services. Therefore, university was the first educational institution where I knew right away that I am autistic and could get specialised help from the beginning.
So, I mentioned that this talk is on the assumption of incompetence, and so the logical place to start is exploring what that actually means. In my experiences, the experiences of my autistic friends, and indeed what is commonly portrayed in the media and online, autistic people are often split broadly into 2 categories: the ‘savants’ and, for want of a better term, the ‘dunces’ I suppose. The savants have exceptional skills and brilliant IQs, whereas the other category are seen as essentially obtuse and someone to be pitied and not taken seriously. What both groups have in common though is that they are perceived to have a complete lack of social skills, an extreme rigidity in thinking (and so we can’t be creative), and we must require copious amounts of additional help. Speaking from my own personal experience, I’ve had people speak incredibly slowly to me, use “easier” words when speaking to me, attempt to physically guide me places, and that’s only within the context of university, let alone the rest of the world. I’ve also seen how people’s behaviour towards me changes when they hear that I’m have a diagnosis of autism, and while it is actually sometimes for the better, they shouldn’t really have been treating me differently beforehand when they assumed I was neurotypical.
The next thing to look at is how those assumptions would / do affect those who are autistic in higher education. I’m sure everyone here is in agreement that it ain’t great. Being deemed as either a “borderline genius” or essentially a “waste of time” in an academic setting means that expectations are set either incredibly high or incredibly low. That in turn doesn’t leave much room for a person to just be adequate, something that is actually quite underrated. These assumptions also mean that if you fall outside of the stereotype you are met with phrases such as “oh, you don’t seem autistic” or “you’re not THAT kind of autistic”, something which is really undermining. They also lead to a reduced confidence that the institution will understand or respect your differing needs and be sensible about them. And the real metaphorical kicker, and in my opinion the worst effect, is that you develop a fear of asking for help in case it “proves” that you are incapable and that you have somehow failed. The feeling that if you admit to struggling then you are “proving the haters right” and that there will be some sort of collective “I told you that you aren’t good enough” means that it can be really hard for some autistic people to come forward when they start struggling, and instead attempt to manage it by themselves until it spirals out of control.
So, what are the barriers faced by autistic students at university? We’ve already mentioned having to manage expectations and deal with a general lack of understanding. There’s also the issue of potentially living in a brand-new place away from home where you might not know anyone. Anxiety and other commonly co-occurring mental health conditions such as depression means it can be extra hard to meet people and make friends. This can lead to loneliness and worsening mental health. The general drinking and partying culture quite prevalent in, at least British, universities is often really inaccessible to autistic people as it can be loud and overwhelming with lots people acting irrationally because they’re off-their-face drunk. Add to that the new, difficult workload, trying to navigate around an unfamiliar campus, having a timetable that will vary from day to day and term to term, thus making it difficult to form a proper routine, it’s easy to get overwhelmed and lost trying to manage everything at once. It could also be the first time living away from caregivers, and so there may be a new responsibility to cook every day, clean, do laundry and take care of everything that you would have had help with before. Then we factor in the barrier of actually being on campus. Waiting to enter a lecture hall means you are standing in a crowd, and then trying to leave again means you are fighting with some number of students all trying to fit through one door at the same time. The sensory stimuli around campuses are often difficult to deal with, such as florescent lights which are harsh and have a tendency to flicker rather than just breaking like the normal bulbs. The sound of hundreds of pens scratching in a lecture theatre can be overwhelming, as is the hubbub of people chatting in huge, echoing buildings. If a university then decides to randomly place a piano in the middle of the forum that anyone can play… you basically can’t go in there anymore.
They were just a few of the examples that I have noticed myself, but there will be many more that don’t bother me but will bother other autistic students that I’m not even aware of. You can only get so far with a combination of sunglasses, stim toys and ear defenders before you need actual support. Some universities will have support for students with ASD, some will even have GOOD support for us! But what about the day-to-day requirements where a member of staff can’t help? Are there designated spaces around campus that a students can go to if they are trying to control a meltdown, or do we have to wander round campus, trying to find somewhere quiet and out of the way?
Now, no one thinks this sort of thing was done with any malicious intent, rather it was just a lack of autistic input when designing the buildings and schedules. There may also be a lack of resources, lack of support staff, lack of finance seems to be a common issue to put in any measures to counteract the existing problems. And there is nothing inherently wrong with that as an excuse. A lack of understanding about ASD and what autistic people need is everywhere and no one would expect universities to be free from those internalised bias if they’ve never had any reason to question themselves. Where the problem comes in is when issues are raised but not addressed, and that is the first key point about how to make higher education more accessible: if someone comes to you with a problem, you should actually try to fix the problem.
Before I go into the practical solutions to the barriers, I think it would be pertinent to quickly address why it’s important that we make education more inclusive and accessible. It’s all pretty obvious stuff to be honest, but for the sake of being thorough I’ll quickly go through it:
Aside from it being grossly unfair to those with ASD, the university doesn’t really benefit from not teaching us to our full potential, and for that to happen we need to be comfortable in the space, it needs to be inclusive, and it needs to be accessible. There are loads of awards and accolades for inclusivity that universities clamour for, and that they want and they work towards, as well as grants and schemes to help them achieve this. I don’t think it is unfair to say that they should deserve the awards by having those measures in place. Designing or redesigning a higher education institute to be more accessible to autistic people, or indeed disabled people of any form, does not hinder the progression or education of those whom it does not apply to. As Dr Hakim said, it actually benefits everyone, not just the autistic students. So, lots of the accommodations that are commonly made for autistic students would also benefit those with other sensory issues, those with alternative communication requirements, those with social anxiety, to name but a few. Ultimately, providing help without having to be asked for it would ease the strain of university support systems, as it lowers the chance that autistic people will end up struggling, and thus prevents problems from building in the first place. The saying “prevention is better than cure” is applicable here as well. Because it’s easier, it’s cheaper, and more efficient to enact systems and ideas to make the entire experience easier, rather than having to try and help people who have, or are about to, hit breaking point. Not to mention it reflects better on the university obviously if their students don’t end up dropping out or leaving severely burnt out.
Alright, now we’ve talked about what the assumptions are, how they impact the students, what the barriers are, why the barriers currently exist, and why the barriers shouldn’t exist, let’s talk about actual, practical solutions.
Right away a piece of practical advice for lecturers is to use post-it notes or an equivalent system in lectures, seminars, tutorials, etc. If a student is autistic, or if they have another reason why being called on in class might not be appropriate, give them a bright pink post-it note to either put on their desk or on their book in view so that you can instantly see they are someone to be avoided when asking questions. The system is discrete as a post-it note is not unusual in an academic setting, it’s cheap as a stack costs £2.99 from WHSmith, and I did check yesterday, it’s instantly visible so you don’t have to memorise names and faces and try and match that to ILPs, and they’re easy to replace if they get lost. If a lecturer is hell bent on asking questions then autistic students can be told about that system in private, but alternatively, if we wanted to make it inclusive for everyone, they could be at the front of the class so that the students can go up and decide on a class-by-class basis whether they feel up to interactive learning, or whether they want to take a post-it note and put it on their desk so that they can just observe the content rather than having to actually interact. I stopped going to my tutorials as I kept being asked questions because the tutor didn’t know that my face matched my ILP, my Individual Learning Plan, but this system is easy and would have worked for me.
Another solution I have for actual academic staff when teaching is to finish lectures with either a particular end slide such as a slide saying, “any questions”, or by literally saying the phrase “any questions” or something. This means the autistic student knows that the content portion of the lecture is over and can slip out before everyone else is dismissed. So, they can get out the door but don’t have to worry about going too early and missing content, nor do they have to be in the throng that will be headed for the door as soon as everyone’s allowed out.
Introducing yourself to the students as well, or even explicitly saying that if a student wanted to say hello so you can recognise their face, is also a good way of assuaging some of the fear of the unknown. That’s how I knew Dr Hakim because I introduced myself at the end of a lecture. I’d been way too scared to go to her tutorials because I didn’t know what she was like and it was too anxiety-inducing, but by introducing myself and her introducing herself I felt more relaxed and understood that actually, she’s quite friendly!
Having multiple ways for students to contact you as well to accommodate differing communication strengths is also a brilliant way to help. This could range from office hours, email, Microsoft teams, an anonymous chat feature, a chat feature on the module page or even a message board actually physically in the faculty building where people could put any concerns or suggestions they have. Using myself as an example again, I lose my ability to speak when I am very overwhelmed and I can’t process information very fast. This means writing an email might be easier for me that explaining in person because I can take my time. If I’m not understanding a concept and I’m actually making myself overwhelmed with worry that I don’t understand something, sitting down at a computer and writing it out rather than explaining it and stuttering over my words is a lot easier for me. Another thing is setting clear rules about expected etiquette in communication forms. If you expect all emails to be started with “Dear Madam,” and ended with, “Yours sincerely” then make that clear. Write it down or put it on the introduction slide so everyone knows what is expected by you. If you expect people to write in continuous prose but then you reply with “k”, then maybe consider how it is being interpreted if a student is trying to mimic and follow your lead in terms of formality. The more specific you can be, the better. Generally autistic people thrive on clear guidance and we struggle to interpret vague or unknown rules. So, setting the rules clearly and sticking to them will give everyone an easier time.
Another suggestion I have is leading so called “quiet tours” during fresher’s week, where students are shown quieter routes around campus so that they can navigate without needing to pass through the huge, loud buildings. Fresher’s fair can be quite painful if you have sensory tolerance issues, and so planning some quieter events can also help. In addition to quiet tours around campus, you could also show people workspaces on campus that are usually less busy, which might also be a good thing. My autistic friends and I, we all have our favourite quieter spots on campus, and we’ve had many conversations where we discuss which ones are our favourites and why. If your university doesn’t have an ASD social group then I would recommend starting one, preferably with an autistic member of staff running it so they understand what it’s like to be autistic. That way students can meet other people who are like them in that regard, and it also provides a space where you don’t have to explain the condition, because it’s inherently understood by the nature of the group.
Training for staff is an obvious one, and I understand this is where financial constraints might come in. But if there are autistic students it might be worth just floating the idea about if anyone would like to talk to some staff members. I would mention though that training staff in the stereotypical “textbook” autism isn’t actually going to solve much. In fact, it’s likely to do the opposite as any person who doesn’t fit that mould will henceforth find it difficult to get proper recognition for their condition, if all that staff know is it’s a 4-year-old boy who never speaks and screams a lot. The training should be up-to-date and really, it should be focused not on “what causes autism” or so called “treatments” because ultimately, in an academic setting that isn’t what’s needed. The training should focus on ways to accommodate differing needs and how to adapt learning to a style that better suits those on the spectrum.
So, we vaguely touched on this before but weirdly, covid actually made university more accessible to those with disabilities, as while online learning wasn’t always ideal, and it wasn’t really great for social activities, it did allow students to study in a space that they could control and that they were familiar with. A potential blended learning approach even post-covid could be considered. By studying from home, I and other students didn’t have to expend energy simply navigating through the city, getting to campus, walking around, mingling with crowds etc. I could just roll out of bed 10 minutes beforehand with all my energy and ready to learn!. My home is a setting that is familiar, and the pre-recorded lectures were a blessing in disguise. There’s something called Auditory Processing Disorder is very common in the autistic community. I have it and mine means that I cannot distinguish easily between hard sounds, so words such as bat, pat, and mat all sound the same to me. Having pre-recorded content means I could pause it and rewatch it to follow along better, and it also allows people who maybe can’t process things as fast to pause it and understand the material. It would obviously be quite rude of me to ask a lecturer to pause in the middle of his seminar so that I could read my notes again to sort out the information in my head before proceeding, but if I have a video, I can take all the time I need, and I don’t have to worry about that.
Another practical piece of advice I have is having designated spaces on campus that students can visit if they are getting overwhelmed. It’s never really ideal to have to find a corner of an empty corridor to try and calm down, and it’s not great to be having a meltdown in the middle of a study space either. Even if there is an unused office space that autistic students can duck into should they need it, small things like this can help make campus slightly more manageable.
In terms of less physically tangible solutions, a fairly obvious one would be to avoid being condescending. If you wouldn’t speak to a non-autistic student that way, it probably isn’t appropriate way to speak to an autistic student that way. The same goes for any adjustments a student asks for or requires. It might not make sense to you but there will be a reason it has been requested. Reasonable adjustments aren’t about giving autistic students an advantage. They are about lessening the pre-existing disadvantage.
Another thing I would say is that the institution or the support services makes an actual list of support options available, including, but not limited to, what we’ve discussed today. It’s a lot easier for a person to read a list and choose options that would help them, than attempt to come up with solutions themselves. Especially if you are also trying to work within the potentially unknown parameters of what you think the university would be able to offer. Ultimately though, if all else fails, ask autistic students what would help them, as there is a good chance that we will have some sort of solution in mind. And even if we don’t have a practical solution, we will be able to point out the problem, and then a collaborative solution can be achieved. It’s about including autistic voices ultimately.
The last thing that I wanted to end on is that ultimately, what we’re aiming for in the removal of these barriers is to make it so autistic people are free to basically be adequate, without the pressure of trying to prove to people that we “deserve” to be at uni. The assumption of incompetence exists because statistically autistic students are less likely to go to university and more likely to drop out when we do. Making higher education more accessible means that the figures will begin to even out. We’ll be able to be rubbish without fitting a stereotype, we’ll be able to be brilliant without being labelled one of “the clever ones”, and we’ll be able to be everything in between. No one should have to prove themselves to be an utterly exceptional case in order to escape the assumption of incompetence. No one should have to fear that coming forward and admitting to struggling will in some way “prove” we were never really meant to be here. Because autistic people deserve the opportunity to study at a high level, regardless of what others may think of us.