A sequel to this previous “study” blog post, further demonstrating extreme commitment to a joke.
Harper G (2020). The feasibility of this unreasonable jerk of a brain retaining any degree of sanity: A follow-up study on meteorological changes in the context of COVID-19. Mind The Flap. bit.ly/346hJ1i
Like many autistic people, this unreasonable jerk of a brain has struggled to cope during the COVID-19 pandemic. This unreasonable jerk of a brain also experiences significant distress around heatwaves, raising interesting questions about its response to both events occurring simultaneously. A previous study in June 2020 found that this unreasonable jerk of a brain functioned relatively smoothly during the first heatwave of the pandemic, with staying at home providing a protective effect against the heatwave response; various other themes were also identified. This follow-up study explores the experiences of this unreasonable jerk of a brain during a two-day period of hot weather in July 2020 and a more extended heatwave in August 2020, enabling a more thorough analysis of its functions in different contexts. The themes of the previous study were largely corroborated. The prolonged second study period led to the development of the Two Brain Cell Theory, which explains much of the heatwave response using an analogy of this unreasonable jerk of a brain being run by a skeleton crew of two plucky brain cells, intensifying the “spiky profile” seen in many neurodivergent people. The following further themes were identified: the anticipation is the worst, the manifestation of shutdowns and meltdowns, the perceived complexity of multiple access needs, the therapeutic benefits of Jackbox, and half-heartedly is better than nothing. The paper provides various policy recommendations for future management of this unreasonable jerk of a brain, concluding that this unreasonable jerk of a brain should be more honest with itself and others regarding pandemic-related difficulties instead of dismissing itself as fraudulent.
The novel coronavirus (SARS-CoV-2) and resulting COVID-19 pandemic has caused unprecedented change and upheaval to all our lives. Autistic[i] and other neurodivergent people have in some ways been hit particularly hard by the pandemic and essential measures to suppress the virus;[ii][iii][iv] this group already struggles with social isolation,[v] disruption to routine[vi][vii] and uncertainty,[viii] experiences high levels of anxiety[ix][x] and were already often without support.[xi] However, some autistic people have also experienced beneficial changes; working, socialising and attending appointments digitally has reduced the need to navigate inaccessible sensory environments,[xii][xiii] required forms of communication and other barriers.[iii][v][vii][xiv]
Within the vast diversity of the autistic spectrum lies this unreasonable jerk of a brain (henceforth TUJOAB), which belongs to the author. Like many other autistic brains, TUJOAB experiences significant anxiety and distress when faced with uncertainty and disruption to routine, and has recorded a marked increase in various forms of being an unreasonable jerk since the COVID-19 pandemic was declared by the World Health Organisation in March 2020. Since May, this effect has been compounded by shifts away from full lockdown, a phenomenon also noted in the wider autistic population;[vii][xv][xvi] the factors behind this vary significantly.[iii] As yet, there are no studies focusing specifically on TUJOAB’s response to the easing of lockdown, but it is commonly understood to be based on having no less need for interaction than neurotypical peers[v] and anecdotal reports of being the only one who knows what two metres looks like.[xvii]
TUJOAB is also uniquely characterised by its unusual responses to hot weather (henceforth “the heatwave response”).[xviii] While the near-pathological obsessive anxiety that results is clearly tied to underlying sensory differences,[xii][xiii][xix] we still know relatively little about this phenomenon, with only one previous study examining the heatwave response in detail.[xx] Notably, various similarities have emerged between the heatwave response and TUJOAB’s response to the COVID-19 pandemic;[xx][xxi] it is hoped that these similarities will aid communication and understanding in future.
Since the COVID-19 pandemic was declared, the likely prospect of a heatwave coinciding with the pandemic has raised interesting questions for this unreasonable jerk of a brain regarding its ability to manage the cumulative effects of both. An initial mixed-methods study carried out in June 2020[xx] found that lockdown had a largely positive impact on the heatwave response, with policy implications for mitigating future summers. July initially remained relatively cool in comparison to previous years, until an initial rise in temperatures on 30th and 31st July provided an opportunity for a short one-month follow-up study. However, as subsequent heatwaves followed and the study period extended well into August, this study was able to observe the impact of more prolonged meteorological changes on this unreasonable jerk of a brain and how this manifests in a range of busier contexts, professional and otherwise, as well as on annual leave; thus assessing the feasibility of TUJOAB retaining any degree of sanity as multiple events coincided. As before, this study prioritises the inclusion and insight of the autistic community[xxii] by centring the experiences of this unreasonable jerk of a brain as principal investigator.
The participant was recruited involuntarily on 25th July 2020, when the 7-day forecast from The Weather Channel on the participant’s phone revealed a rise in temperatures on 30th and 31st July. As the previous study had shown promise in enabling TUJOAB to objectively observe and distance itself from unhelpful thoughts and feelings,[xx][xxiii] it was considered appropriate to test the findings of that paper in what was then planned as a brief follow-up study. In line with the findings of the previous study, and despite vocal objections from TUJOAB, it was hypothesised that TUJOAB would function relatively smoothly compared to pre-pandemic heatwaves and that the heatwave may in fact be a welcome distraction from the pandemic.[xxiv] Due to the convention that Life’s Ethics Board will approve literally anything, no further preparation was needed.
The study period was initially defined as two days, 30th July and 31st July. However, the decision was made on 1st August to pursue a second study period due to forecast high temperatures the following week. The forecast changed multiple times in the following days; by 5th August, the final study periods had been confirmed as between 30th and 31st July and between 7th and 13th August (inclusive). During these periods, temperature in TUJOAB’s location[xxv] was recorded between 4.00pm and 5.00pm each day using data from The Weather Channel on the participant’s phone. TUJOAB was asked to take the AQ-50 questionnaire[xxvi][xxvii] at the beginning and end of the study because it comes up in every autism research survey ever, despite its limited usefulness in predicting who would benefit from a full autism assessment[xxviii] and the fact that TUJOAB has already received an autism spectrum diagnosis on two separate occasions previously and had already taken the AQ-50 twice in the previous study.[xx]
The primary source of data for this qualitative study consists of a series of regular qualitative interviews with TUJOAB throughout each day during the study periods. TUJOAB’s comments were recorded on the participant’s preferred digital note-taking platform, Google Keep. After the study period, the themes identified in the previous study[xx] were assessed against the new data, and additional themes were identified.
As before, the participant implemented several routine measures to mitigate the heatwave response; these included staying away from Twitter[xxix] and news websites, and setting aside time on both evenings to liveblog episodes of the BBC science fiction drama Doctor Who in a private Facebook group set up by her friends from Oxford Doctor Who Society.[xxx] In the previous study, the participant re-arranged internal work calls to avoid the study period or to prioritise mornings as much as possible. However, the first study period only included one call which could not be moved, and work days during the second study period were significantly busier owing to its positioning between two periods of annual leave and the contemporaneous publication of an Autistica Action Briefing.[iii] Consequently, this measure was removed from the methodology, with the study instead observing how the heatwave response manifested in a range of contexts.
Finally, it should be noted that this study comes with several limitations. Although the principal investigator has been emboldened by the success of the previous study both in terms of outcomes for TUJOAB and as a blog post, she remains a law graduate and policy type who has no business doing science.[xxxi] The sudden changes to the duration of the study was problematic; most notably, quantitative data on the participant’s running times were not collected as only one run was planned for the original study period, although it was later observed that attempts at running during the second study period were slightly pathetic (outlined in Other emerging themes below). The lead-up to the first study period was characterised by much higher baseline anxiety and lower baseline mood than in the June study, and may have been confounded by a meltdown halfway through. The duration of the second study period was fraught with uncertainty, which may have increased baseline anxiety leading into the second study period,[viii] though efforts have been made to acknowledge this phenomenon in the results section of this paper. There were various instances across both study periods where TUJOAB experienced significant news or other changes,[xxxii] which may have had a confounding effect on its mood and activity and in some cases triggered a meltdown.
Results and discussion
At the beginning of the study period, TUJOAB recorded a score of 43 on the AQ-50, well above the autistic spectrum cut-off of 33 and in line with data from the June study.[xx]
Figure 1 (below) shows recorded temperatures on days within the study periods. The mean temperature during the study periods is 28.55ºC, only slightly higher than the mean of 28.25ºC in the initial study;[xx] however, this is greatly influenced by the outlier on 13th August. With this removed, the mean temperature becomes 29.5ºC, an increase of over one degree compared to the previous study.[xxxiii]
At the end of the study period, TUJOAB recorded a score of 44 on the AQ-50. Meteorological changes had no effect on this score, because that’s not how autism works.
Validity of previous themes
Overall, the new qualitative data largely corroborated the themes identified in the previous paper.[xx] These themes are analysed further below.
TUJOAB is only capable of worrying about one of these things at a time
One of the most surprising themes of the previous study was that TUJOAB would only focus on either the heatwave or the pandemic at any one time, rather than experiencing the cumulative burden of both. New data from this study is largely consistent with this finding; the vast majority of the participant’s notes focus solely on the heatwave, with only a few shifts to the pandemic and the easing of lockdown. However, there were some occasions during the second study period where worries on both themes appear contemporaneously; usually, the heatwave remained the dominant theme, and the participant expressed concerns about “the rest of my brain waking up” after the heatwave (see The Two Brain Cells Theory below) and intensifying emerging worries relating to the pandemic. The announcement towards the end of the second study period that the participant’s office would remain closed for the rest of 2020 suggested possible limitations to this phenomenon; this initially produced a “weirdly numb” response from TUJOAB as would be expected, but “a full range of emotions” were observed after a delay of around four hours alongside the heatwave response.
The mitigating effects of not going anywhere
As before, not going anywhere demonstrated a significant protective effect against the heatwave response. Although the second study period included more social interaction than the previous study (including planned, spontaneous, virtual and in-person interaction), the continued absence of crowded enclosed spaces greatly reduced anxiety. The absence of a commute or major plans outside of work allowed for more “no-think”[xxxiv] time (see “The manifestation of shutdowns and meltdowns” in Other emerging themes below) which may also have been beneficial, although further research is needed in this area. Indeed, the participant frequently observed that “I’m only coping because I shut out the world” and expressed doubts over long-term benefits in the event that she is ultimately able to move closer to pre-pandemic life.[xxxv] Conversely, a slight decrease in anxiety related to the easing of lockdown was observed as the participant was choosing to remain at home and avoid the heat, rather than remaining at home out of necessity as wider society left her behind.
The significant roles of guilt and social anxiety
This persisted as a very strong theme throughout this study, with guilt mentioned by TUJOAB virtually every day during the study periods. TUJOAB continued to struggle with direct conversation relating to the ongoing heatwave and demonstrated susceptibility to suggestion, claiming it “can’t un-think about it”. This, in turn, causes anxiety ahead of interactions and makes social media a particularly difficult environment. The participant expressed concerns on multiple occasions about this avoidance making her appear fraudulent: “worried I’m doing Too Well because I didn’t say anything”.
The cumulative impact of sensory overload
The increased duration of the second study period compared to the first study corroborates this theme, providing a clearer picture of how this aspect of the heatwave response worsens over time (see The Two Brain Cell Theory below). Several meltdowns and shutdowns were observed across the two study periods; these have been included in a separate theme (see Other emerging themes below). On 31st July, it was observed that TUJOAB was “being held together by the same 2 minutes of new Bastille”;[xxxvi] the interaction between multiple sensory inputs remains a key question for future research. Reading[xxxvii] in the participant’s bedroom with headphones on also proved beneficial. The participant habitually spends periods of hot weather switching rapidly between occupations in order to remain distracted, and several spikes in anxiety were prompted by this process failing: “I’ve taken my foot off the pedal and now I’ve become conscious of my surroundings”. Towards the end of the second study period, prolonged sensory overload in fact had a positive effect in reducing anxiety (“I haven’t been super anxious, more ‘broken, no-think, only briefing”);[xxxiv] this is explored further in The Two Brain Cell Theory below.
The benefits of framing this as a study
A strong theme in the initial study, this was less evident in the new data, largely because TUJOAB is now already experienced in this approach. The study framing continued to be beneficial regarding guilt, with the participant recognising this phenomenon as a theme from the previous study and dismissing it accordingly.
The Two Brain Cell Theory
The primary new theme identified is the emergence of the Two Brain Cell Theory from a longer second study period with busier and more varied days. On 11th August, this was explained by the participant as follows:
“Essentially, the heat knocks out non-essential thinking, which might not be a bad thing right now because I don’t like the thoughts I’m having [about the pandemic and easing of lockdown]. It’s left me with a skeleton crew of two brain cells that scream if they aren’t given constant distraction and occupation, which means I’ve felt really professional and on-it at work this week but at the same time all no-think and it makes me feel like a fraud on all counts.”[xxxiv][xxxviii]
The participant went on to refer to the Two Brain Cell Theory repeatedly, both in data collection and in wider interactions with others.[xxxix] An extension of the theory in which the two brain cells are named Briefing (after the primary task of the second study period)[iii] and Banger (after the participant’s role in determining the Autistica 3 O’Clock BangerTM),[xl] with all other brain functions divided between the two, was proposed, but this is not necessarily validated by the current data and should be treated with extreme caution.
The Two Brain Cell Theory explains various phenomena observed throughout this programme of study, including the protective effects of heatwaves against anxiety related to COVID-19, the repeated shutdowns later in the day (outlined in Other emerging themes below) and the “slow but calm” feeling observed when TUJOAB is functioning smoothly.
The Two Brain Cell Theory also encompasses the concept of a “spiky profile” of skills in autistic and other neurodivergent people,[xli] who often excel in certain areas while experiencing significant difficulty in others. Following this framework, it can be observed from data collected thus far that TUJOAB’s profile becomes even spikier during heatwaves. Across both studies, it has been observed that TUJOAB’s abilities in the virtual workplace remain largely within normal range. In the present study, the second study period demonstrated that this remains true even in busier periods and in the presence of multiple external video calls. The mitigating effects of not going anywhere appear to have widened the gap between the different levels of impact of the heatwave response in different areas: “It’s weird that thanks to the joys of remote working, I can feel super professional releasing briefings and [progressing with other projects] while, at the same time, be really struggling with other things.”[iii]
This is partially explained by the observation that camouflaging[xlii] is extremely easy online; verbal interaction is brief and markedly focused on the topic(s) at hand, while text-based interaction allows the participant to process and respond in her own time. Nevertheless, there were many occasions identified where conscious camouflaging was not required; the participant was not pretending to be fine, she in fact was fine, and frequently reported feeling fraudulent regarding difficulties in different times and situations. The Two Brain Cell Theory explains this as intensification of the spiky profile, using the analogy of a skeleton crew of two brain cells who remain competent at the skills they are designed for and indeed crave activity, but may entirely lack or struggle to take over skills which are normally within the remit of other brain cells within TUJOAB.
Other emerging themes
The other themes identified in this study are as follows: the anticipation is the worst, the manifestation of shutdowns and meltdowns, the perceived complexity of multiple access needs, the therapeutic benefits of Jackbox, half-heartedly is better than nothing. Below, each of these themes is outlined in turn.
The anticipation is the worst
The participant observed ahead of both study periods that “the anticipation is the worst.” The existence of a large global industry dedicated to predicting the heatwave response is at times helpful for preparation, and indeed makes this programme of study possible, but also evokes high levels of anxiety in TUJOAB that sometimes outperform those evoked by the heatwave response itself. Throughout the study periods, TUJOAB repeatedly focused on future worries rather than present coping and successes, falling into the thinking trap of “fortune-telling” or “predictive thinking” as outlined in Cognitive Behavioural Therapy (CBT).[xliii] This occasionally manifested itself in physical symptoms: “Looking at Monday’s and Tuesday’s forecast made me feel a bit sick.”
The manifestation of shutdowns and meltdowns
On 30th July, a shutdown was observed and described by the participant as “NO THINK.”[xxxiv] Circumstances beyond the scope of this paper later pushed this into a full-scale meltdown which could only be slowed by the timely intervention of new Bastille.[xxxvi] This had a confounding effect on data collection for 31st July, when TUJOAB reported a post-meltdown feeling of “settled albeit drained.” Two meltdowns were observed during the second study period,[xliv] which is unusual in such a short space of time and within days of the first observed meltdown.
During the second study period, more controlled “no-think” shutdown-like periods were actively pursued by the participant as a mitigating strategy. This was observed nearly every day of the second study period, particularly in the evenings. This provides further evidence for the Two Brain Cell Theory; a skeleton crew of two brain cells left to control the entire brain are likely to burn out by the end of the day.
The perceived complexity of multiple access needs
In pre-pandemic summers, TUJOAB’s participation in outdoor socialising was often complicated by its requirement of shade; darker, cooler areas of land which occur when objects block the Sun’s rays. This visible resource is often abundant in the presence of trees, walls, parasols and large objects, yet is frequently observed to mystify abled people. Parallels can be drawn with the more recent concept of social distancing[xlv] to prevent the spread of COVID-19, which has dominated the 2020 news agenda and our very way of life but which many abled people experience severe deficits in understanding.
At various points during the study, TUJOAB’s need for shade and need to stay two metres away from people it does not live with[xlvi] directly conflicted, further restricting its ability to participate in outdoor socialising at a time when use of outdoor spaces is encouraged to prevent the spread of COVID-19. It is likely that these obstacles could be overcome with relatively simple environmental adaptations.[xlvii] However, multiple access needs are often presumed by abled people to be too complex to manage; often, this results in only the difference recognised first (in this case, the need for shade) being considered.[xlviii]
The therapeutic benefits of Jackbox
Jackbox is a series of PC party games designed to be played in groups of up to eight people, each of whom plays via their mobile phone browser.[xlix] In order to play remotely, one person on a video call screen-shares the main game while other players join as usual by entering the code shown into a given website. The participant has greatly enjoyed playing Jackbox games with friends prior to and throughout the pandemic. During this study, it was twice observed that the participant’s friends has organised a spontaneous virtual Jackbox session following a meltdown, and that this engaging, fun distraction had a significantly beneficial effect on TUJOAB. This directly contradicts previous theories that TUJOAB would struggle with even virtual face-to-face social interaction during heatwaves.
Half-heartedly is better than nothing
The prolonged nature of the second study period rendered TUJOAB unable to avoid running on hot days by switching the twice-weekly runs, as observed in the previous study.[xx][l] Ahead of the first run of the second study period, TUJOAB considered forgoing the run altogether, in direct conflict with its insistence on strict routines. Ultimately, TUJOAB decided to go ahead with a lower-level episode of Couch to 5K,[li] reasoning that this was better than nothing and would still be a significant improvement from November 2019, when the participant first started running with this app. The same approach was adopted for the second run. In both cases, the participant still experienced the physical and mental benefits of having started her day with an attempt at running, however half-heartedly.
Implications for future policy
Several recommendations for policy changes regarding the management of this unreasonable jerk of a brain can be derived from this study. It appears that video calls do not necessarily need to be removed from future heatwaves while working and socialising remotely, and may in fact be actively beneficial. Likewise, attempts at running should be maintained throughout, albeit at reduced difficulty. Beyond the pandemic, TUJOAB should strongly consider making remote working a part of its long-term heatwave strategy. This unreasonable jerk of a brain should also stop trying to predict the future, in line with multiple other recommendations provided by several rounds of CBT.
Most significantly, the Two Brain Cell Theory highlights that productivity and perceived and actual calmness in some situations, particularly remote working, have no correlation with TUJOAB’s difficulties more widely during heatwaves. It can be extrapolated that productivity and perceived and actual calmness in some situations, particularly remote working, also have no correlation with TUJOAB’s difficulties more widely in other difficult times, such as during the COVID-19 pandemic. It is recommended that this unreasonable jerk of a brain embraces its own spiky profile as it does that of other neurodivergent people, stops feeling like a fraud, and is more honest with itself and others regarding ongoing difficulties linked to the COVID-19 pandemic.
This study was approved, somehow, by Life’s Ethics Board, following surprisingly widespread approval of the previous study.
Harper G declares a conflict of interest as both principal investigator and participant in this study.
The majority of data collection was carried out by the two plucky brain cells who got the participant through the study periods. The author would like to thank these two brain cells for their resilience and for constantly adapting in challenging circumstances.
The author accepts that she has taken this joke way too far, but finds it genuinely helpful and is open to the possibility of making this an annual feature of the blog.
[i] 100% of participants in this study prefer identity-first language (“autistic person”) to person-first language (“person with autism”), although 100% of participants also said “Do I really have to say this again? We went through this in the last study!” while rolling their eyes at having to make a big deal of this every time they talk about autism in order to avoid being mauled online. For more information, see: Kenny L, et al. (2015). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 20(4), 442-462. bit.ly/3dB19rv
[ii] Autistica (2020). Coronavirus and autism. bit.ly/31qdcpg
[iii] Autistica (2020). Action Briefing: Impact of COVID-19 on autistic people. bit.ly/3iHjGpa
[iv] Women and Equalities Select Committee (2020). Unequal impact: Coronavirus (Covid-19) and the impact on people with protected characteristics. Written evidence submitted by Georgia Harper, Embracing Complexity Lead at Embracing Complexity. bit.ly/2ZfEKeh
[v] Oomen D, et al. (2020). Impact of the COVID-19 pandemic on autistic adults. bit.ly/2Zprchu
[vi] Asbury K, et al. (2020). How is COVID-19 Affecting the Mental Health of Children with Special Educational Needs and Disabilities and Their Families? Journal of Autism and Developmental Disorders. bit.ly/2D5oh5v
[vii] Ameis S, et al. (2020). Coping, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond. Molecular Autism 11, 61. bit.ly/2ZV1zFx
[viii] Rodgers J, et al. (2017). Towards a Treatment for Intolerance of Uncertainty in Young People with Autism Spectrum Disorder: Development of the Coping with Uncertainty in Everyday Situations (CUES) Programme. J Autism Dev Disord 47(12), 3959-3966. bit.ly/2yY6E4W
[ix] Simonoff E, et al. (2008). Psychiatric Disorders in Children with Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample. J Am Acad Child Adolesc Psychiatry 47(8), 921-929. bit.ly/2VyZs7a
[x] Lever A & Geurts H (2016). Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. J Autism Dev Disord 46, 1916-1930. bit.ly/3bh8V9U
[xi] Autistica (2019). Building Happier, Healthier, Longer Lives: Briefings to improve autism policy and research. bit.ly/3eqcgFm
[xii] Nicolaidis C, et al. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism 19(7), 824-831. bit.ly/31rxMFI
[xiii] Tavassoli T, et al. (2015) Measuring Sensory Reactivity in Autism Spectrum Disorder: Application and Simplification of a Clinician-Administered Sensory Observation Scale. J Autism Dev Disord 46, 287-293. bit.ly/2VqwhUw
[xiv] Autistica (2020). The world after Coronavirus. bit.ly/2BP50E5
[xv] Pearcey S, et al. (2020). COVID-19: Supporting Parents, Adolescents and Children during Epidemics. Supplementary Report 03: Differences in pandemic anxiety, parent/carer stressors and reported needs between parent/carers of children with and without ASD; Change over time in mental health for children with ASD. bit.ly/38YKUnt
[xvi] Toseeb U, et al. (2020) Short Report: Supporting Families with Children with Special Educational Needs and Disabilities during COVID-19. PsyArXiv, 21 April. psyarxiv.com/tm69k/
[xvii] The world.
[xviii] This has been the subject of an unhealthy number of blog posts, including this one. For example, see: Harper G (2019). How I Write Essentially The Same Heatwave Blog Over And Over. Mind The Flap. bit.ly/388XwrL
[xix] Autistica (2019). Research projects: Uncertainty, anxiety and sensory sensitivities in autistic adults. bit.ly/2YGaxpE
[xx] Harper G (2020). The impact of meteorological changes on this unreasonable jerk of a brain in the context of COVID-19 and a changing lockdown. Mind The Flap. bit.ly/3ibatWI
[xxi] Harper G (2020). Unprecedented. Mind The Flap. bit.ly/2NyHVby
[xxii] Centre for Research in Autism and Education (2013). A Future Made Together: Shaping Autism Research in the UK. bit.ly/2Bhmycg
[xxiii] Oliver J, et al. (2015). ACTivate Your Life: Using acceptance and mindfulness to build a life that is rich, fulfilling and fun. Robinson, London.
[xxiv] This may demonstrate the extent of the deterioration of this unreasonable jerk of a brain as restrictions have eased.
[xxv] Corby, Northamptonshire; see note xxi.
[xxvi] Baron-Cohen S, et al. (2001). The autism-spectrum quotient (AQ): Evidence from Asperger syndrome/high-functioning autism, males and females, scientists and mathematicians. Journal of Autism and Developmental Disorders 31(1), 5-17. bit.ly/2BhDwau
[xxvii] The version of the AQ-50 used in this study was accessed here: bit.ly/38718dK
[xxviii] Wigham S, et al. (2018). Psychometric properties of questionnaires and diagnostic measures for autism spectrum disorders in adults: A systematic review. Autism, 1362361317748245. bit.ly/3dCpLjT
[xxix] On 30th July, Autistica (which employs the participant) launched a fundraising drive based on the video game Animal Crossing: New Horizons; the participant, a fan of Animal Crossing, was heavily involved in promoting the event. The participant scheduled tweets in advance of this day as if written by her Animal Crossing character in a takeover of her Twitter account; she regularly logged in to check notifications on these tweets, but largely avoided the Twitter feed itself. For more information, see: Autistica (2020). New Horizons for autistic people. bit.ly/3gZRA81
[xxx] Time and Relative Dimensions in Shitposting. This has been a regular fixture in mitigating the heatwave response since 2018; further analysis of this is beyond the scope of this paper. Time was set aside for liveblogging on most days during the study period; however, not all planned liveblogs took place due to meltdowns, shutdowns and other disruption.
[xxxi] The principal investigator has also co-authored a real research paper, but this was under the careful guidance of actual academics who know what they’re doing. See: Crane L, et al. (2018). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism 23(2), 477-492. bit.ly/2VmxkVq
[xxxii] The details of these incidents are beyond the scope of this paper.
[xxxiii] The author consulted popular Internet search engine Google to determine whether or not this increase is statistically significant, unfortunately with no success.
[xxxiv] The participant’s repeated use of the word “no-think” stems from a TikTok meme in which the opening line of the song Kitchen Sink (Twenty One Pilots, 2011, bit.ly/3kQ53BJ) is re-arranged to produce the phrase “no think”. This sound is used in situations where the person’s mind goes blank, for example in making a decision, or when they make a silly mistake.
[xxxv] The feasibility of the participant ever moving closer to pre-pandemic life again is beyond the scope of this paper.
[xxxvi] Bastille & Coxon G (2020). WHAT YOU GONNA DO??? bit.ly/2E3Ntt8 (CONTAINS FLASHING IMAGES)
[xxxvii] Adichie C (2013). Americanah. Alfred A. Knopf, New York City.
[xxxviii] Derived from a Messenger conversation with friends on 11th August; adapted for study data on Google Keep.
[xxxix] As is habitual for the participant whenever she feels like she might have semi-adequately put feelings into words.
[xl] The thorough decision-making process behind the Autistica 3 O’Clock BangerTM on 12th August, which resulted in a triple-edition of Nelly, Frozen and Phil Collins while producing a series of other temperature-themed songs for future use as well as proposing this extension to the Two Brain Cell Theory, is unfortunately beyond the scope of this paper.
[xli] Frith (1996). Cognitive explanations of autism. Acta Paediatrica 85(s415) bit.ly/3g1qlZD
[xlii] Hull L, et al. (2017). “Putting on My Best Normal”: Social Camouflaging in Adults with Autism Spectrum Conditions. J Autism Dev Disord 47(8), 2519-2534.
[xliii] For example see: Centre for Clinical Interventions Resources: Anxiety (last updated 2019). Unhelpful Thinking Styles. bit.ly/3g2wOTZ
[xliv] The circumstances of these incidents are beyond the scope of this paper. However, it may be of interest that one meltdown involved the participant panicking because she thought she had broken her parents’ new tower fan, only to realise two hours later that it was not plugged in.
[xlv] NHS (2020). Social distancing: what you need to do. bit.ly/2PZg7hC
[xlvi] This is not in fact specific to TUJOAB, it is basic public health guidance which applies to everyone, but the author’s continuing rage at this being seen as part of her individual anxiety rather than doing the bare minimum to protect others is beyond the scope of this paper.
[xlvii] Including, but not limited to, other people also observing basic social distancing.
[xlviii] Embracing Complexity (2020). Embracing Complexity: Towards New Approaches For Supporting People With Neurodevelopmental Conditions. bit.ly/2Y6IVcN
[xlix] For more information, see: Jackbox Games. www.jackboxgames.com
[l] As would be expected from TUJOAB, these runs already take place somewhere between 6.00am and 7.00am.
[li] NHS (last updated 2017). Get running with Couch to 5K. bit.ly/321MxxA