Mental Health | Hauora Hinengaro
Written by Rachael Wiltshire
Understanding Mental Health Challenges
Challenges with mental health are a common experience for autistic people, with research suggesting that 42% of autistic people will receive a diagnosis of an anxiety disorder and 37% of people will receive a diagnosis of depression during their lifetime (Hollocks et al., 2019). Mental health was also identified by autistic learners in our survey as a key area where educators and support people could increase their knowledge, with 52% of respondents indicating this was an area where more understanding was needed.
The mental health challenges that autistic people experience are frequently the result of the stress that comes from being autistic in a world designed for neurotypical people. This means that many of the strategies for meeting autistic learners’ communication, executive functioning, sensory and social needs discussed elsewhere in this guide will also contribute towards creating a learning environment that is supportive of autistic learners’ mental wellness.
Learners who responded to our survey reported that anxiety and burnout were two of the major mental health issues they faced during their tertiary studies.
Anxiety and the Autism Connection
Van Steensel & Heeman (2017) argue that anxiety is an inherent part of the autistic experience. In fact, many of the behaviours that are commonly thought of as symptoms of autism could perhaps be better thought of as strategies for dealing with the anxiety that comes from being autistic in a neurotypical world. For example, stimming helps with regulating emotions like anxiety and routines help to reduce anxiety by providing certainty about what will happen next. Thus, it is important to recognise that even autistic learners without an additional anxiety disorder diagnosis likely experience higher levels of anxiety than their neurotypical peers and deserve supports to help them manage this anxiety.
Exams proved to be a particular source of anxiety for the learners in our survey, with the combination of time pressure, concerns about whether they were interpreting the questions correctly and sensory issues such as fluorescent lights, clicking pens and people sniffing causing such a degree of overwhelm that many learners said they simply froze and were unable to complete large portions of the exam, even if they did understand the material well. For example, one learner wrote that “I’m naturally pretty decent at maths and stats but this strength isn’t recognised in formal exams or tests because they stress me the heck out and I can barely even read a sentence in those situations, much less perform simple mathematical calculations.” Further, the exam environment prevented autistic learners from using strategies, like stimming, that they would normally use to regulate their anxiety. This learner summed up how time pressure and sensory issues, combined with the inability to use effective calming strategies, created a positive feedback loop that pushed them towards overwhelm:
“My mind goes completely blank during the exams due to the time pressure and stress. I have to read questions over and over several times before I can understand what they’re asking (these are questions I could usually understand with ease). Additionally, under this kind of stress, my sensory issues are heightened, and I hear every little sound and it becomes very overwhelming. I also cannot stim while doing the exam because it will distract people and draw very unwanted attention to me. Stimming helps me focus and regulate this overwhelm.
Although autistic burnout is commonly discussed amongst autistic people online, it has only recently come to the attention of researchers, with three independent studies in the last two years seeking to define it (Higgins et al., 2021; Mantzalas et al., 2022; Raymaker et al., 2020). According to these studies, autistic burnout is caused by the stress that autistic people experience from living in a world that is not suited to their needs. Autistic people frequently ‘mask’; that is, hide their autistic traits in order to appear neurotypical and move more easily through the world. Masking requires significant effort and burnout results when this effort becomes unsustainable. People in autistic burnout experience extreme exhaustion, loss of skills and an increase in autistic traits like stimming and sensory sensitivity. Burnout is a significant concern for autistic people: it is often chronic, with people experiencing multiple episodes of burnout across their lifespan and sometimes never fully recovering. It is also associated with suicidal ideation. Whilst it bears similarities to both workplace burnout and depression, the research suggests that these are distinct experiences, and that depression and autistic burnout can co-occur. Supports for learners experiencing autistic burnout are particularly important in the tertiary environment, as the onset of burnout is often associated with major life changes such as the transition to adulthood (Raymaker et al., 2020).
You can support learners by:
- Making recordings of all lectures available online. Anxiety and burnout can impact a learner’s ability to attend lectures in person, and lecture recordings are an uncomplicated way to make the material accessible to learners who can’t attend class in person. In particular, Mantzalas et al. (2022) note that a period of withdrawal is often an adaptive response that autistic people use to manage burnout; the removal of sensory and social stressors allows people to replenish their energy. Even short periods of withdrawal can be helpful (Higgins et al., 2021), and making lecture recordings available allows learners to take a break without worrying that they will fall behind in class. Watching lectures from home also means that learners can stim freely to help them regulate their emotions and attention. Finally, some learners in our survey experienced anxiety because they couldn’t take notes and keep up with what the lecturer was saying at the same time. Lecture recordings reduce that anxiety by allowing learners to go back and re-watch anything they might have missed.
- Allowing learners to leave class discreetly when needed. Learners in our survey noted that at times they became so overwhelmed by social and sensory stimuli that they simply needed to leave the situation and find somewhere quiet to recover. In these situations, knowing that they can leave class without facing negative repercussions would allow them to proactively care for their mental health.
- Allowing learners to use stim toys in class. Stimming is a key strategy that autistic people use to regulate their emotions, with Mantzalas et al. (2022) noting that the ability to stim freely can be protective against burnout. Allowing learners to use non-disruptive stim toys in class is an easy way to support your autistic learners to regulate their own anxiety.
- Making accommodations for exams. Exams were a major source of anxiety for the learners in our survey, with this anxiety frequently preventing learners from being able to demonstrate what they had learnt. There are several accommodations that can be made to the exam process to reduce this anxiety:
- Extra time: Many learners felt that extra time in exams would help them cope with their anxiety, give them time to process the questions and allow them to demonstrate what they actually knew. Learners felt that they needed significant extra time, with one learners saying that they felt they needed “half as much time again as there is normally, or double. The countdown is terrifying.” It is also important that students are actually able to use the extra time they are given to work on the exam: one student was allowed an extra 10 minutes per hour, as well as being able to do the exam on a computer – but because they had to use a university computer that they hadn’t had a previous chance to familiarise themself with, they found that all their extra time was spent getting used to the computer.
- A separate room: For many learners, the exam situation heightened their sensory sensitivities, which then fed back into their anxiety. Many of these sensory issues were caused by other people (sniffing, pens clicking), so allowing students to sit their exams in a separate room would reduce these issues significantly. However, it is important that the room the student takes the exam in is chosen carefully, as the rooms themselves could cause sensory issues: “I have often had it that I was in a special conditions room that had a really annoying noise and I could literally identify other ADHD’ers based on them looking up or their irritability for the same issue.” Students also said they would appreciate the opportunity to familiarise themselves with the exam room ahead of time, as unfamiliar spaces could be a source of anxiety.
- Online, open book exams: One learner said that they had “found it much easier with the university’s change [due to COVID-19] to open-book, online exams, which I can take at home.” These types of assessments remove many of the stressors that caused autistic students to underperform in exams: there is no time pressure, students can manage the sensory stimuli in their environment, and they can stim freely to regulate their anxiety.
- Being openly accepting. Mantzalas et al. (2022) note that societal acceptance of autistic people helps to protect against burnout, as it reduces the need for masking. Many of the learners in our survey had negative experiences with lecturers and tutors dismissing their concerns or being unwilling to give people the accommodations that they deserved. For example, one student recounted: “A member of my group project was changing my work to be obviously wrong, and when I went to the senior lecturer about it to figure out a way to resolve it, she decided I was the problem because I’m autistic and put that same person with me for the next four group projects to force us to “work it out”.” Simply being open to hearing students’ concerns, accepting that the challenges they face are very real and working with them to find appropriate solutions is an easy way that tertiary educators can support their students’ mental health.
- Advocating for better mental health supports to be available on campus. Whilst the learners in our survey were able to access counselling support on campus, it often didn’t meet their needs. Students who needed ongoing support sometimes couldn’t access it: “we only had a limited number of sessions with the counsellors at the health centre and so, for those of us with other mental health issues who required long term counselling, it was hard to access the supports we needed.” Learners also found that on-campus counsellors lacked understanding of autism: one student was laughed at when she suggested to a counsellor that she might be autistic. It is incredibly important that autistic people have access to counsellors who have a deep understanding of autism, as traditional therapies like cognitive behavioural therapy are often less effective in autistic people (Price, 2022). Educators can help to support their learners’ mental health by advocating for better mental health supports to be available for learners.
Mental health challenges are unfortunately an all-too-common experience for autistic people, and tertiary study can often be a particularly challenging time from a mental health perspective. Thus, it is important to proactively offer accommodations that enable learners to look after their own mental wellbeing.
Higgins, J.M., Arnold, S.R.C., Weise, J., Pellicano, E., & Trollor, J.N. (2021). Defining autistic burnout through experts by lived experience: Grounded Delphi method investigating #AutisticBurnout. Autism, 00(0), 1-14.
Hollocks, M.J., Lerh, J.W., Magiati, I., Meiser-Stedman, R., & Brugha, T.S. (2019). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis. Psychological Medicine, 49, 559-572. Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis | Psychological Medicine | Cambridge Core
Mantzalas, J., Richdale, A.L., Adikari, A., Lowe, J., & Dissanayake, C. (2022). What is autistic burnout? A thematic analysis of posts on two online platforms. Autism in Adulthood, 4(1), 52-65. What Is Autistic Burnout? A Thematic Analysis of Posts on Two Online Platforms | Autism in Adulthood (liebertpub.com)
Price, D. (2022). Unmasking Autism: Discovering the New Faces of Neurodiversity. Harmony.
Raymaker, D.M., Teo, A.R., Steckler, N.A., Lentz, B., Scharer, M., Santos, A.D., Kapp, S.K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: defining autistic burnout. Autism in Adulthood, 2(2), 132-143. “Having All of Your Internal Resources Exhausted Beyond Measure and Being Left with No Clean-Up Crew”: Defining Autistic Burnout | Autism in Adulthood (liebertpub.com)
van Steensel, F.J.A., & Heeman, E.J. (2017). Anxiety levels in children with autism spectrum disorder: a meta-analysis. Journal of Child and Family Studies, 26, 1753-1767. Anxiety Levels in Children with Autism Spectrum Disorder: A Meta-Analysis | SpringerLink
About Rachael Wiltshire
Rachael Wiltshire is an autistic person and a member of the Altogether Autism Consumer Advisory Group. She is passionate about increasing societal awareness of neurodiversity and designing systems that are flexible enough to meet everyone’s individual needs. She is particularly interested in education and enjoys working with other neurodivergent students in a peer support and tutoring capacity.
Check out other guides in the series: