Are universities doing enough to support neurodivergent students?

When Australia recently adopted the Universities Accord recommendation to raise higher education participation to 55 per cent, it bit off two big problems. The first was encouraging enough people to enrol. The second was finding enough academics to teach them.

To achieve the accord targets, Australia will need to increase recruitment from communities that have been under-represented at university. That includes people on the autism spectrum, estimated to comprise anywhere between 1 and 5 per cent of the population.

“There is no universe in which we can ignore the experiences of neurodivergent students, or autistic students specifically, and still meet those targets,” says Ebe Ganon of Deakin University. “Every student cohort needs to be on the table. The rising rates of diagnosis in primary and secondary school are absolutely the canary in the coal mine.”

Ganon, herself an autistic person, has experienced university from both sides of the lectern. A sessional academic and current postgraduate student in Melbourne, and a former professional staffer in Canberra, she is also deputy chair of representative body Children and Young People with Disability Australia.

“Universities are probably already being inundated with autistic students who did not have their education needs met at school,” she says. “They really want to get to university, and for this to be their time.”

Sandra Thom-Jones, former pro vice-chancellor at the Australian Catholic University, says meeting the accord targets will prove “extremely difficult” until autistic Australians are embraced in higher education and shepherded through to graduation. More importantly, the “societal loss” will be “massive” for both autistic people and the workforce – including the academic workforce – if this doesn’t happen. Academia is a “very attractive career” for people on the spectrum, Thom-Jones says. “Your job is to explore something that you’re interested in, in absolute depth and commitment. That’s what we’re great at.”

Now a consultant and billing herself as the “Autistic Professor”, Thom-Jones’ 20-year academic career produced some 200 journal articles, multiple research awards and two books. “I didn’t do those things in spite of being autistic,” she says. “I did those things because [of] the way that my brain works as an autistic person. I love information. I absorb it. I get obsessed with it. I bring it all together in really unique, different ways.”

Thom-Jones says about 3 per cent of Australians would be categorised as autistic if rates among five- to 14-year-olds were extrapolated across all age groups. But this figure would under-represent women “because of the significant barriers to female diagnosis. Wherever you look, you’re going to get really different views on the prevalence. What we do know is that it’s a lot higher than most of the official figures.”

Research in England supports this view, with diagnosis rates ranging from one in 34 among 10- to 14-year-olds to one in 6,000 among those aged over 69. The researchers estimated that close to three in four autistic people – up to 1.2 million people, the vast bulk of them aged over 20 – remained undiagnosed.

Autistic Britons are a “completely untapped resource”, according to Juliette Atkinson, information technology director at the University of Bradford. She reorganised her department’s recruitment practices after realising that 1.4 million disabled and neurodivergent people lacked paid employment in a post-Covid UK where “good tech people were like hen’s teeth”.

Atkinson says two candidates for a recent job “aced” their interviews but proved “absolutely horrendous” in technical tests. A third, “clearly very neurodivergent” candidate, struggled at interview, offering one-word answers. “We gave him the technical test anyway. He not only aced it; he fixed something we didn’t even know was broken. This guy totally knocked us off our feet. He is by far the most exceptional engineer in the entire department.”

Despite their potential as students and staff, autistic people’s higher education experiences often prove far from ideal. Queenslander Grace Garrahy’s strong academic results earned her a place in a head-start programme, undertaking university subjects while she was still at high school. But her then-undiagnosed autism and mental health struggles forced her to abandon the scheme. A subsequent stab at a nursing degree also proved short-lived.

“I felt really alone,” she says. “I didn’t get the right support. Socialising seems to be a big part of university, but I really struggled with that because people didn’t quite get me.”

Now a second-year occupational therapy student at the University of the Sunshine Coast, Garrahy managed to stick at tertiary study after her autism diagnosis in 2019 “allowed me to get some correct supports”.

Support matters in an environment seemingly designed to torment. Familiar characteristics of university – big spaces, crowds, sensory overload, group work, unspoken subtexts, clumsily written assignment tasks, rowdy debates, extra marks for presenting in front of one’s peers – are challenging for many autistic people and offer them little scope to display their strengths.

Open days are a typical example, Thom-Jones says. “There’s thousands of people and car rides and people giving out stickers. There’s music and hot dogs and smells. It’s loud and bright and crazy. [Autistic people] go away thinking, ‘Gosh, if that’s what university’s like, it’s not the place for me.’”

Open days presenting real-life versions of university would be far more productive, she says. “Come and sit in a class. Come and see what a tutorial looks like. Come and…tour the library when it’s functioning as a library, and doesn’t have clowns doing face painting.”

Group assignments are another example, she says. “Autistic people…work well in teams if everybody’s focused on achieving the goal. But that’s not what happens. [Students] want to sit there and talk about what they watched on TV. Half of them want to meet at the pub, and some of them aren’t going to come anyway. That’s if you even get in a group. Mostly you only get in a group if everybody likes you.”

Garrahy says academics’ attitudes to autistic students vary greatly. “It kind of depends on who you get. Some people are old school; some are more understanding. I am lucky in my degree, I think, because a lot of my teachers are occupational therapists themselves. They’ve been quite accommodating. But…friends at uni have the complete opposite experience.”

Source: 

Getty Images (Montage)

Deakin’s Ganon says one of the biggest shortcomings in the treatment of autistic higher education students is that “universities think they’re already doing enough”. She says the Universities Accord itself fell into that trap, citing highly contested data to support its assertion that people with disabilities already exceed their “expected enrolment share”.

She says that in Australia’s student experience surveys, students with disabilities report below-average scores on almost every metric. “We have the data that shows us exactly where the problems are. We have very vocal students with disability who are happy to help work towards solutions. But the tertiary sector still seems to have the view that it’s fixed this.”

Ganon says universities’ devotion to robust tutorials exemplifies the challenges for autistic students. “A lot of university courses apply a 10 per cent participation grade to your contributions in those tutorials. That isn’t measuring your ability to understand or synthesise the content; it’s measuring your ability to very quickly form a thought and shout over the top of somebody else.

“You’ve got this rapid-fire conversation between the tutor and a couple of really confident students. Someone’s over there playing devil’s advocate; people are jumping in and interrupting each other. And you’re sitting there trying to compose a response to a question from two minutes ago in a conversation that’s already moved on.”

Equally, neurotypical students may find themselves disconcerted by the pronounced “stimming” some autistic people engage in to help them focus, relieve stress or regulate their energy, such as hand-flapping, repetitive vocalisations, body rocking or jumping. Ganon says any notion that such behaviour is “too difficult to accommodate” is “rooted in ableism” – discriminatory behaviours and beliefs against people with disability.

“We already accommodate lots of disruptive behaviours in the classroom,” she says. “People leaving for a smoke break and coming back in smelling of cigarettes; students yelling out in class out of turn; people tapping a pen on the table; I don’t see how…physical regulatory behaviours displayed by some autistic students should be considered any differently to these other behaviours that we’ve deemed socially acceptable.”

The ACU’s Thom-Jones says another problem is the “mythology” that autistic people “grow out of it” – a view reflected in official statistics. A recent government report says that people with autism are “more likely to be younger, with 83 per cent aged under 25” and most aged between five and 14. “That is absolute nonsense,” she says. “We’re talking about a lifelong condition.”

She says autistic children navigate school by learning to hide the things that make them different. “That costs a huge amount of intellectual, social, emotional energy.” Then, university ushers in “a whole lot of new social rules” that students are expected to negotiate instinctively.

“You’re not just asking me to demonstrate intellectual capacity. You’re asking me to magically develop a set of social skills. An ability to intuit unwritten social rules. An ability to deal with a really complex, busy, loud sensory environment,” Thom-Jones says.

“Socially awkward” behaviour that teachers “put up with” in children garners less tolerance after they turn 18, she adds: “You’re still socially awkward. You don’t quite get the social rules. You make mistakes. Maybe your tone of voice isn’t quite right; you don’t make the right facial expressions; you don’t know how to make eye contact. [When you are] an adult, people are so much less accepting.”

Tim Fowler, chief executive of New Zealand’s Tertiary Education Commission, says precise data collection is critical amid burgeoning rates of disability and diversity. “We’ve changed our approach to be far more focused on what students are presenting with, as opposed to the buckets that the institutions might want to put them into,” he says.

Fowler says awareness of neurodivergence is growing, largely because of student representatives’ efforts. “Universities are telling us that this is becoming a real challenge. They’re starting from the premise that they want to do the best they possibly can for these students.”

Ganon says universities need to embrace universal design for learning principles: “It’s about reducing the burden on individuals by making sure that the majority of access needs are met by default; there are ways that you can adjust tutorials to make them far more accessible and inclusive. [It’s also about] ensuring that the expectations for how people interact are really clear and everyone’s opinion is heard; using tools like a speaking order; in an online environment, using the raise-hand function so that you can track people’s contributions. If you plan to ask your class questions in your tutorial, giving them those questions in advance.”

She says universities can relieve sensory overload by providing natural light instead of fluorescent tubes, and installing air conditioning that does not tick or hum. “Ensure that there’s enough space for people to sit without breaching personal space. Make sure that people leave strong-smelling food and drink outside the room. It’s about being considerate and designing comfortable spaces. These sensory things can be the difference between an autistic person being able to engage in learning or having to leave the room.”

Ganon says such modifications tend to improve the learning experience for “everyone”, not just students with disability. “But I wish I didn’t have to say that any more,” she confesses.“I hope someday we can just do something because it helps disabled people. For example, allowing long pauses in conversations because we’re giving people time to express their thoughts. That might be inconvenient and frustrating for some people. But making sure everyone has access is just the right thing to do.”

Academics and institutions unconvinced by moral rationales may find their minds changed by legal ones, such as the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), to which Australia is a signatory. “Ruling some students in and out based on their perceived level of support needs is a dangerous game and will certainly land any university that tries to play it in front of the Australian Human Rights Commission,” Ganon says.

“If full and total inclusion was easy, we wouldn’t need several legislative and human rights instruments governing it. We wouldn’t have researchers and practitioners constantly working to improve the evidence base and communicating about best practice. If we as a nation are to fully realise the implementation of the UNCRPD, be compliant with our own laws…and even meet the equity targets under the accord, these are conversations we must have.”

Thom-Jones says the requisite changes are often more about attitude than infrastructure. “If [students] need to wear…headphones to block out all the background noise, [or] a cap or sunglasses to block out the bright light, there’s a lot of social resistance and [they’re] made to feel very uncomfortable.”

Some universities have installed low-sensory rooms, but they are in short supply and must be booked. This effectively requires students to “plan your overload in advance”, Thom-Jones says. And universities’ accommodations often require assertiveness from autistic students who are “not in a position to ask for what they need”. Even when they can, the obstacles often persist.

Autistic students can struggle to understand the wording of assessment questions, for example. The default response, often, is to give them two-week extensions. “Two weeks later, I still don’t understand the question. All that’s happened is I’m more stressed [and] my next assignment [is] due,” Thom-Jones says. Universities should enlist autistic consultants, students or graduates to review courses or disciplines “from start to finish” and identify any barriers, “because so many of the barriers are so simple”.

Garrahy, the student from the University of the Sunshine Coast, says useful accommodations for autistic students include things such as breaks during classes, extra “processing” times in exams, assignment extensions, noise-cancelling headphones and options to attend lectures online and bring assistance dogs on to campus. Ideally, such arrangements are articulated in tailored learning access plans, which are negotiated between students and their institutions and outline the agreed supports and accommodations.

Another tool is the “Hidden Disabilities Sunflower”, a lanyard that neurodivergent people wear to identify themselves in potentially stressful places such as airports, entertainment venues and, increasingly, universities.

But Garrahy says the best single thing universities can do for their autistic students is to facilitate opportunities for them to advocate for their own needs and get to know their peers. Her discovery of a university club run by and for neurodivergent students was “life-changing”.

“I don’t know if I would have continued with uni if I hadn’t…met people like that. It was like, ‘I’m not alone in this. So many other people…are fighting for the same things as I am, and hoping for the same things and struggling with similar things.’”

The USC group has about 100 members, including 10 to 20 trained student representatives. But it is just scraping the surface, Garrahy says. “Lots of friends in my degree…who are neurodivergent [are] not in the group. A big chunk of people don’t even know this club exists.”

Source: 

Getty Images (edited)

This reflects widespread institutional obliviousness to autistic people and their needs. Ganon says that for decades, understanding of autism was rudimentary “outside of young white boys. Access to diagnosis is still a huge issue, especially for Aboriginal and Torres Strait Islander communities, people of colour, trans and gender-diverse people and even women.”

Even now, most people misinterpret the autism spectrum as “one long line” from severely impaired to highly functional, she says. “It’s not a good way to understand the many different presentations of autism. It’s more of a spiderweb – a circle with spokes that represent different aspects like social communication, motor skills, pattern recognition and other types of neurocognitive processing. It’s one big spectrum of strengths and support needs, and people will move on that spectrum throughout their lives, depending on the support they can get.

“For example, verbal communication is a strength of mine but my gross motor skills are pretty shocking. At primary school, I refused to participate in physical education because my body just didn’t move the way that everyone else’s did. These days, I’m a fitness instructor. I’ve put a lot of time and energy into developing my motor skills, which has only been possible with support.”

University staff are among the many who fail to appreciate these nuances. Ganon says many academics “haven’t even done Facilitation 101 before they’re thrown into the tutorial room to engage with students. We put huge demands on teaching staff to be able to facilitate these learning environments – in person, digital, live, e-learning, asynchronous, whatever it is – with very limited resources, little to no professional development and time that is often not fairly compensated. It’s no surprise that students with disabilities rate the university experience so poorly.”

Disability support units are important, but “they can’t do this work on their own. They can tell staff that students require adjustments. But if teaching staff don’t have the support to understand what those adjustments are or why they’re needed or how to implement them – or even how they can make their courses more accessible by default, regardless of any adjustments – then I’m not sure how we can expect the student experience to improve.”

Ideally, Thom-Jones says, teachers “with all the time in the world” would stay behind after every lecture to highlight the “important” bits for an autistic student who struggled to identify the key, examinable messages. “We don’t live in that world because [lecturers] get paid peanuts,” she says. “It’s not the responsibility of the individual teacher who’s got that student for 12 weeks and has 157 others. It’s the responsibility of the university to make sure that those supports and resources are there and accessible.

“If we had someone [with] the capacity to sit down at the beginning of each semester, and look through…all the assessment, essay [and] exam questions and get them right, that would only have to happen once. [Students] would still need help, but that would be a really good step in the right direction.”

Some academics also need to make “attitudinal changes”, Thom-Jones says, so that students feel “safe” to disclose their autism. She cites some teachers’ belief that autistic people are simply not suited to certain careers. “How do you know that [your] lecturer is not the one who’s going to [say] ‘you can wear your headphones [or] sunglasses, but I know you’re not going to make it in my class’?…I hear people say things like, ‘I’ve got an autistic student enrolled to do nursing. We’ll have to filter that one out because obviously, they’re not suited to nursing.’”

Ganon says people with such attitudes overlook the fact that students with and without disability must meet entry requirements for their programmes, including demonstrating baseline skills and aptitudes for courses in professions such as nursing, teaching, engineering and medicine.

“It’s extremely unlikely that anyone without the professional skills or readiness for an occupationally driven programme is going to be able to complete it,” she says. “Anyone suggesting that making degrees more accessible for autistic students is going to degrade the quality of the degree, or set students up for workplace failure, is falling into ableist traps which suggest…there is only one way to succeed.”

These attitudes are not confined to educators, Ganon notes, with disabled graduates facing “barrier after barrier” when they enter the workplace – despite legal obligations on employers to make the adjustments required for their success. “This is an issue with workplace systems and cultures, not with the students,” Ganon says.

Universities are among those workplaces, Thom-Jones suggests. “I know of several hundred [academics] who have not disclosed [their autism]. Those people are working in an environment where they are forced every single day to hide who they are.”

In her recent study of autistic academics around the world, many participants discussed “either disclosing and being stuck at a particular [professional] level, or not disclosing and having to leave academia because…they can’t get the adjustments that they need to survive – which, in so many cases, are quite minor.”

These adjustments are not dissimilar to the accommodations made for autistic students, Thom-Jones says. “Can we let people have dimmer switches? Can we make it normal for people to be able to use…headphones, sunglasses? Can we be realistic about how many meetings people actually have to go to? Can people turn their Zoom cameras off? We allow people to buy [themselves] out of teaching or research. Why don’t we allow people to buy out of unnecessary meetings? Why don’t we make it OK for people to say, ‘I don’t really have the energy to come to the after-work social thing’. It’s about working with that person. What would work for them?”

Bradford’s Atkinson says the benefit of retaining talented autistic staff outweighs the inconvenience of accommodating their needs. And in a world slowly coming to terms with the prevalence of autism, universities have no realistic alternative.

“Staff should be a representative mix of the student body,” she says. “That’s really, really important.”

john.ross@timeshighereducation.com