There is much focus on helping autistic individuals during the early years of their lives. There are systems offering early support, transitioning from early education to primary school, and even support during secondary years. However, autistic adults have expressed concern over supports for adolescents and adults, particularly when transitioning beyond secondary school.
As an autistic person I find this concerning. We continue to be autistic, no matter what age we are. It is important we continue to receive support with major life transitions to help foster self-advocacy and access to education and the workplace. Data from the Australian Bureau of Statistics (2015) revealed that autistic individuals are less likely than disabled individuals who are non-autistic, and non-disabled individuals, to complete a Bachelor Degree qualification or higher. Non-autistic disabled individuals and non-disabled individuals were also more likely to have an Advanced Diploma, Diploma, or Certificate III or IV than autistic people (you can read about the findings here).
When listening to non-speaking Autistic advocates such as Tim Chan, when there are factors such as high and complex support needs, it may be even more difficult to access and participate successfully in tertiary education. Clearly, we have work to do in making tertiary education more inclusive, attainable, and most importantly, enjoyable for autistic students.
1. Secondary school supports
Helping with transitioning can start as early as secondary school and can make a huge difference in what courses we pursue, where we take them, and what support we can access. As the adult learning environment places more emphasis on independent learning and self-tracking of due dates, secondary school teachers can facilitate these skills by providing opportunities for organisational and study skills practice. This includes ‘flipped learning’, providing regular feedback when a student expresses concern about their progress and running study skill sessions tailored for Autistic and Neurodivergent individuals (Neurodivergent adults may also facilitate this). Having regular discussions with teaching staff and school support staff can help us to network and learn more about the tertiary environment in advance.
2. Choosing a course
Having a knowledgeable careers counsellor can help in identifying key passions and interests and how these could lead to career options. This assisted me in determining what subjects I would need to study in order to get into my preferred course, and how I could apply for special consideration. Through my careers counsellor, I received regular updates about universities, scholarship opportunities, and explicit communication as to which announcements applied to the course I wished to pursue.
It is also important to identify how well one can manage the tertiary course, by considering how intensive the workload is, the contact hours involved, whether it works to our autistic strengths, and what adjustments can be made if we have significant challenges.
Tim Chan reflects that for individuals with high and complex communication support (HSaCCS) needs, it is important to account for the extra time involved with processing issues and support with augmentative and alternative communication (AAC). It may be helpful to speak to an autistic student who has taken the course, or is practising in the field of interest, to learn about expectations, course requirements, and the structure of assessments. For example, some courses have a greater emphasis on group work and longer hours than others; it may depend on the course or university with regards to the extent of adjustments that can be made.
3. Tertiary environments during secondary school
Studying short courses at tertiary institutions such as TAFEs and universities may give us a ‘taster’ of the adult learning environment and how it differs from the secondary school environment, while we can still receive support from teachers and parents. It also allows us to explore our interests further and decide whether the subject is worth pursuing.
I was lucky to go to a secondary school that encouraged me to try learning in tertiary environments, which not only provided me with valuable opportunities for independence, but also informed me in choosing my future career path. I realised that while I love horses and animals, working in a TAFE environment did not suit my learning needs, and the subject matter was not aligned to my beliefs regarding animal welfare despite it being an equine specific course.
Offering work experience in our areas of interest can also make a huge impact on what pathway we choose. For instance, I initially wanted to be a veterinarian and participated in work experience. I soon discovered that my anxiety levels and ethical concerns meant that this career would be unsuitable for me.
Professor Sandra Jones stresses the importance of having an approachable lecturer and coordinator. Her son benefitted from being able to sit in on a lecture and tutorial so he could experience how each one worked while he was still in secondary school.
4. Open Days and Orientation weeks
Similar to strategies mentioned in my blog about helping autistic students transition to secondary school which you can read here, orientation weeks at universities can provide us with an opportunity to learn about the campus, its physical layout, social opportunities, and study spaces available.
I started attending open days in year 10, as I was unsure of what I wanted to do after secondary school and of how I would cope in a new environment with different expectations. Going to orientation, meeting the staff, and seeing the facilities completely changed my preferences for university; I ended up choosing a smaller university due to my sensory issues, and the disability services and facilities offered. I also loved the community feel and personal touch that current students reported.
Tim Chan similarly feels that attending a smaller institution increases the likelihood of having our individual needs met. When you consider our sensory issues and difficulty interacting with Neurotypicals, attending classes with up to 600 students can be a daunting prospect. It may be wise to enquire about other options for visiting the university other than Open Day, as it can be quite overwhelming as an autistic person going to an Open Day with lots of people, music, and sensory issues.
5. Disability services and advocacy
Having one-on-one meetings with the Disability Services Unit at tertiary institutions are important in identifying how they can provide support, current adjustments made for disabled students, and part time study options. I benefitted from having a meeting with my disability advisor to tailor an individualised education plan detailing support for academic work, as well as tours across the campus and relevant areas such as the library, café, and specific classes I would be attending in my first semester. I was grateful to be able to speak to a current student to learn more about what was expected in my first year of university, and their experience of the course so far. It is important to prepare beforehand for what supports and adjustments are needed.
I had some prior practice with this due to receiving special consideration during high school assessments. I also wrote my ideas down and had a trusted adult attend with me to note-take and clarify what adjustments were available. I was also informed of part time options in case the fulltime study load proved too much for me; this turned out to be a wise preparation.
With the increased group work and then COVID-19, the part time study option has been extremely helpful in managing my anxiety and executive functioning difficulties. It is also important, if choosing to withdraw from units, that you know when the due dates are before penalties are put in place.
For Tim Chan, having a disability officer was extremely beneficial when transitioning, particularly in organising meetings with lecturers and tutors so his support needs were understood and he became more familiar with them.
6. Getting familiar with the campus
Before commencing my first semester at university, I visited the campus a few times with my disability advisor and trusted adult. I practiced going on public transport, with which I was quite proficient due to experience going to TAFE and developing strategies during high school.
I downloaded the campus maps, and my disability advisor took me to the locations of the classes I would be attending so I did not get confused on my first day. This was particularly helpful as I have a habit of getting lost. I must admit every now and then I still go to the wrong floor. I find it is always wise leaving about 10 minutes of ‘buffer’ time in case something like that happens. I also had my weekly schedule with the room numbers written down as I often struggle to remember what class I have and where it is situated, especially if I don’t have visual support.
My disability advisor also highlighted important locations on my physical map and directed me to where I needed to go if I got lost or needed help. The help desk, disability services, academic services, and counselling were identified as key locations. This also gave me an opportunity to learn where some quiet study spaces may exist.
As a person with HSaCC, Tim Chan stresses the importance of familiarising ourselves with spaces in tertiary institutions beforehand, specifically to reduce anxiety and prepare for when something unexpected occurs.
7. To disclose or not to disclose?
To disclose or not to disclose one’s autism or neurodivergent status is a difficult issue and a personal decision both in educational and workplace settings. As I am quite open about my autism, I was comfortable disclosing being autistic to my disability advisor, tutors, and lecturers. This was helpful as I was able to access services like exam adjustments, assignment extensions, and justifications for certain needs such as turning my camera off during a Zoom tutorial.
Unfortunately, you have to be prepared for the possibility that some people may have preconceived notions of autism – sometimes it may be worth having additional support such as another staff member, trusted adult, or your disability advisor in case this happens. This was reflected in a study conducted by Amanda Richdale which showed many autistic students expressed concerns about disclosing due to fear of discrimination (mentioned in this article). This can be a difficult process, particularly as privacy issues require that you disclose directly to your teachers and share your individualised education plans.
If you have a trusted adult or carer who you wish to inquire on your behalf at times, you will also need to give written consent for them to contact your lecturers and tutors.
It is important that we have avenues for advocating and explaining our autistic ways of thinking, and how this may manifest in different ways of learning compared to non-autistic individuals. For instance, due to neurotypical social norms, people often assume that I am not listening if I am drawing, not making eye contact, stimming, or moving and pacing. For me it is quite the opposite, and I was able to write in my Education Plan my signs of active listening such as doodling, looking away from people, and my need for watching lectures online.
For some individuals, it is not an option not to disclose as their Autistic expression may be more obvious; Tim Chan found it useful to provide a fact-sheet about Autism and his unique needs for his peers so he was better understood when he openly stimmed or needed breaks.
8. Study skills
During secondary school, there were a lot of general study skills sessions on offer and I made use of them. When I started University study, I found that I still had issues with open ended assignments and rubrics. I was easily overwhelmed by assignments with rubrics only asking me to provide ‘realistic’ and ‘accurate’ information. What is realistic? What is accurate? How much detail should I go into? What information is relevant? These are all still questions I continue to ask myself.
During lectures and required readings, I struggle to understand what the lecturers expect me to note. I tend to fluctuate between writing nothing at all, and almost paraphrasing the whole textbook. My mother and I reminisce about the fact that our marks tend to fluctuate between a mere pass and a high distinction – she had similar difficulties at school and University.
Explicit instructions directing us to the most important information as well as more specific guidelines about what readings are important may help address this confusion. For instance, highlighting in the lecture slides and reading lists with statements such as “This will be important for Assessment X” may resolve confusion around open ended terms such as “skim” or simply listing the chapter recommended.
With regards to rubrics, if you use terms such as ‘good’ or ‘realistic’, further explanation of what these terms mean in the context of the assignment is needed, as often these meanings will change depending on what discipline we are in. Written annotations demonstrating aspects of the rubric may assist us in working out how others link their ideas together such as, “This relates to X part of the rubric, as it demonstrates a realistic explanation of the therapy chosen”. Example assignments of exemplar and non-exemplar responses may also provide clarification.
Opportunities to do drafts and receive feedback is important, particularly for individuals with high performance anxiety (which includes a lot of us). We may not have social opportunities for peer feedback, so we rely on further support from lecturers and tutors. Substitute assessments (essays in place of tests), assignments (individual versus group), and allowance for different modes of delivery (e.g. recorded presentations rather than live), may cater better to our Autistic strengths, particularly as we can revise and work at our own pace. Often during timed exams, my anxiety prevents me from remembering the information I have learned, and I often draw a ‘blank’ when answering questions in a closed book format.
9. Group work
Group work has been a constant challenge for me, since primary school. Group generated tasks do not necessarily reflect my communication skills or my ability to collaborate with others. I understand that some feel it will help prepare us for the ‘real world’, but I argue that in the real world, the people with whom we collaborate will likely be in a workplace context, allowing for rapport building and communication strategies. For instance, I work alongside mentors as a part of my job, for which I have received good feedback.
However, in an academic context, group work gives me much anxiety. What I find happens is I either end up doing all the work and have to lead the conversation, or someone else takes over. Assigning and structuring of groups and tasks is vital; allowing students to assign themselves can place autistic students at a disadvantage. As I tend to get left out in neurotypical circles, I often am not chosen for group assignments, and end up getting assigned with unfamiliar people while neurotypicals choose their friendship groups.
A better option would be to randomly assign groups early in the semester such as week one, or to consult us beforehand to identify our difficulties or preferences in group work situations and, therefore, plan for group work going forward. We need time to prepare for such situations plus the chance to get to know our group members (something that is made more difficult when studying online). For example, pre-assigning the groups and asking us if we are content with the choice, or providing alternative assignment structures for us may be helpful. If there is a group assignment involving a role play, it may be possible to allow us to work in a pair instead of a group, or to plan it ourselves and then implement it with the lecturer.
If there is already emphasis on group work in other subjects and if we are in a course involving practical Placement, it is likely we are already getting exposure to working with others. Expecting us to participate in too many group work contexts may actually impact on our confidence when working with others, increase our anxiety, and contribute to burn out. It is exhausting trying to converse with people we do not know well.
10. Organisational strategies
As mentioned with study skills, general comments about organisational strategies may not be helpful for autistic students. We may require clear guidelines about note-taking skills and examples of how to pick relevant information. I have found it helpful to learn how to prioritise study time, organise assignments when I have multiple due in the same week, and track assignment due dates.
Throughout secondary school, I would often forget assignment due dates and panic at the last minute. Having a weekly planner, assessment planner, and phone reminders all provided visual cueing and tracking so I was not relying on my memory or executive functioning. It has also helped me with scheduling appointments and meetings as I put everything in my phone calendar. Simple adjustments such as designating my weekends for watching the up-coming week’s lectures, as well as learning about which readings were most pressing with regards to writing assignments and preparing for exams, made a big difference to my productivity. It can also be good to learn with other students and explore our mutual interests relating to our course.
“Keep at it, persevere, and always turn to someone for help if you find yourself stalling or not able to do your best.” ~ Tim Chan
Having more support in tertiary education will make a huge difference in our experiences of higher education. We all deserve access to higher education and receive adequate supports to help us succeed. It is important that tertiary institutions consult adults and students to gain feedback on current supports and how they can be improved.
If you would like to learn more about autistic students in higher education, I encourage you to consult with and follow the work of autistic adults who have completed, or are currently studying, higher education. A few examples of advocates who have helped me throughout my education journey are Penny Robinson, Tim Chan, Clementine Bastow, Professor Sandra Jones, Daniel Giles, Dr Emma Goodall, Dr Jac Den Houting, Jane Hancock (also my mother!), and Wenn Lawson, just to name a few.
~ Shadia Hancock, Autism Actually, 2020
I would like to thank Prof Sandra Jones, Dr Wenn Lawson, and Tim Chan for their contributions to this blog.