Cognitive Dissonance of a Neuro-Normative Perspective on Autism: A Review ()
1. Introduction
Autism Spectrum Disorder (ASD) is a disorder that is primarily characterized by differing brain structure when compared to a neurotypical (NT) individual (Dekhil et al., 2020). Characterization of its symptoms can include, but is not limited to, speech and communication difficulties, social understanding and contextualization, impulsivity control, and regulation of emotions (Vogindroukas et al., 2022; Conner et al., 2020). Although these behaviors may be the most common representation of ASD, there are a variety of different combinations of symptoms that all contribute to the individual making of ASD (Nadeem et al., 2021). It is essential to note that ASD is considered a spectrum and not a linear process. In contrast, a person who is usually coined allistic is defined as an individual or person who does not hold a diagnosis or connection with ASD. Often, these individuals are considered neuro-normative (NN) and NT (Plueckebaum et al., 2023).
Within the last 50 years, substantial progress within the field of autism has been made, with considerable progression and understanding of the disorder (Lord et al., 2018), there are still mysteries surrounding its etiology and how it can manifest and present itself within an individual (Gołaska, 2013). However, there seem to be translational difficulties when this progress is applied to the education sector, namely Higher Educational Institutions (HEI). Emerging research is showing the unsatisfactory feelings of autistic students, with rebuttals including untrained staff, accessible education, and a lack of understanding. A study by Gurbuz et al. (2019) identified that autistic students self-reported significant challenges and more mental health difficulties than non-autistic students. These challenges focused on the social components of university life, including social skills, social support opportunities, and levels of ASD awareness from others. When reaching out, autistic students often had difficulty and a perceived lack of support in signposting for “who” could provide support and “what” support would be suitable and available, leaving many to remain unheard and unsupported (Cage & Howes, 2020). Moreover, numerous qualitative studies have been conducted to represent the autistic voice at the university accurately. Regarding feelings of isolation, one study identified that a student had difficulty interacting with their peers, and they stated, “I Spent Most of the Freshers in my Room” (Goddard & Cook, 2021). This indicates that during the initial phase of joining the university, they could not utilize the social opportunity of meeting other students. Students also felt a lack of support, and a study found that one student felt, “I just didn’t have the strength to explain” (McPeake et al., 2023: p. 10). It potentially established that they felt unsupported and vulnerable during their university journey, and having experienced so many setbacks, reaching out for further help appears more of a hindrance than a help. Furthermore, the transition in HE can be problematic for some autistic students. One study identified the concept of change: “Change isn’t exactly easy” (Ballantine et al., 2023: p. 329). They illustrated its toll on students adapting to university life and its new territory.
This surface-level representation of themes provokes accountability as to why, in recent years, autistic students still feel let down by the UK education system, precisely HE. It prompts the question as to what must happen for autistic students to feel sufficiently supported. It can be assumed that this ignorance, for lack of a better word, can leave many feeling like a last priority and unnecessarily struggling.
Another factor that can compound quality of life and well-being during university is the time at which autistic individuals are diagnosed. Research by Atherton et al. (2022) identified that those students who discovered that they were autistic at an earlier age reported a higher level of well-being; however, in contrast, those who did not learn this information until they were older reported reduced well-being and quality of life. Thus, this illustrates the importance of the timing of diagnosis and is something to consider within HEIs when working with autistic students. Subsequently, many students leave HE or have persistent difficulties throughout their studies (Dexter et al., 2024). A study by Gurbuz et al. (2019) measured the completion rate of degrees for autistic students. Although 2.4% of students were identified to have an autism diagnosis, it was established that less than 40% would graduate and reach completion. In other words, the drop-out rate is almost ten times that of the general student population, at 60% compared to the 6.3% national average. It has been identified that how universities support neurodiversity can be based on a “postcode lottery,” with the UK’s education often “failing too many people.” (Topple, 2023). In 2023, a petition was set up by a former student for the UK Government to “Require Universities to Train Staff on Neurodiversity,” which received nearly 17,000 signatures (Petitions—UK Government and Parliament, 2023).
As illustrated in Figure 1, given the scale of the student population’s discontentment, it is imperative to examine further the intricacies of the difficulties faced by autistic students and underpin the contributing variables that may be at the root cause of HEIs.
2. Positionality Statement
The positionality of the author is that of NT. This review is constructed from observations within their practice in conjunction with current literature. It is understood the irony that the positionality of the author is NT. However, this review aims to address the consistent contradictions and difficulties within the field and advocate for change. To further mitigate bias, perspectives from autistic individuals within the literature are directly referenced to represent the current landscape accurately.
Figure 1. Difficulties for autistic students at university.
2.1. Prevalence of Autism
Currently, autism diagnoses are rapidly increasing, whereby a 2021 study found a 787% rise in the number of diagnoses between 1998 and 2018 in the UK (Hill, 2024). It is unknown at this time whether the prevalence of Autism is directly correlated to the amount of new knowledge and resources available now to identify it or whether it was identified in previous years as something that manifested differently, such as mental illness (Jarrett, 2023). Within the UK, it is estimated that there are 1 in 36 children with an autism diagnosis (Hill, 2024). Regarding adulthood, there is an average of more than 150,000 with suspected or undiagnosed ASD (O’Nions et al., 2023), which is increasing year upon year. Substantial modifications have been made to the literature surrounding ASD, such as terminology, diagnostic criteria (DSM), and a deeper understanding of the impact of ASD in the broader context (Happé & Frith, 2020). As identified in Table 1, there has been a significant increase in ASD prevalence throughout the years, where it is almost a third more likely to occur than 18 years ago. As of 2024, there has been a 50% increase in the number of patients with an open referral for suspected autism in England in the past 12 months (Hill, 2024).
The significant trend of increasing autism diagnosis can be attributed to several reasons, such as ever-changing diagnostic criteria, the removal of terminology such as “Aspergers” allowing a broader categorization (Parsloe & Babrow, 2016), and a sharp increase in knowledge and education about the condition. Despite its progress and recognition, the current ASD diagnostic process can be arduous and exhaustive. Several routes can be used to diagnose ASD, as identified by the
Table 1. Prevalence rates of autism after SARRC (2021).
Year |
Prevalence Rate |
2004 |
1 in 166 |
2006 |
1 in 150 |
2008 |
1 in 125 |
2010 |
1 in 110 |
2012 |
1 in 88 |
2014 |
1 in 68 |
2016 |
1 in 68 |
2018 |
1 in 59 |
2020 |
1 in 54 |
2023 |
1 in 44 |
National Health Service (NHS) England. It can be a timely process that requires a waiting list and several steps. A simplified version is provided in Figure 2. This can be a stressful process for prospective ASD patients awaiting a diagnosis, often leaving many to self-diagnose, go private, or not address it at all (Punton, Dodd, & McNeill, 2022). Although not representative of the rest of the world, it provides insight from a Westernized perspective within the United Kingdom (UK).
Figure 2. Autism assessment pathway NHS England after (NHS England, 2023).
The consequences of such can leave many entering the educational system without the adequate support and accommodation needed. That is not to say that a diagnosis is always required in education to make such adjustments. However, it is often a requirement.
2.2. Specialist Resources and Staff
Even when a diagnosis is present when entering education, the specialist educational staff may not always be available. This can include specialist teachers, mentors, teaching assistants, and tutors who work with ASD individuals. As a result of this, many ASD individuals often go without support or the appropriate accommodations due to the scarcity of staff available (Buck, Hurewitz, & Franklin, 2024; Hasson et al., 2024). A consistent lack of addressing one’s needs can often have dire consequences for the individual, such as poor attendance rates (Bailey et al., 2024), mental health difficulties, and internalized negativity and emotional dysregulation (Mitchell et al., 2021).
At present, there appears to be no clear incentive at present to encourage individuals to become specialists in ASD education or to address the shortage. Unlike that of the National Health Service (NHS), tuition fees are paid with an additional bursary for those students studying a healthcare-related NHS course (Morgan, 2022). Another example of subject-specific bursaries includes teaching, where several Universities in the UK offer scholarships to undertake a Postgraduate Certificate in Education (PGCE) (See & Gordard, 2019). This may hurt the enthusiasm towards working with those in ASD and education, especially in the case where current specialists have high turnover and burnout rates (Hall & Pavez, 2023). A crossroads is presented whereby the number of ASD individuals entering and accessing education on a surface level is not appropriately accommodated and adjusted for throughout due to staff shortages.
Even where staff are available, many state that they do not have adequate knowledge or understanding of autism, putting autistic students at a significant disadvantage (Kim & Crowley, 2021). Where staff is available, this is often outsourced (Pickles et al., 2023), ultimately becoming an expensive route for the education provider (Holmqvist et al., 2021). Considering this, it raises the question of whether it would be more cost-effective for institutions to provide funding for their staff to train rather than outsource at short notice. Although it is recognized that outsourcing is often the only option for many institutions, this can be used strategically to improve the upskilling of current staff to meet the demands of the student population.
Further consequences of ASD individuals not having the appropriate support are devastating in several areas of their educational journey and experience. This includes self-esteem and personal belief difficulties, where ASD individuals feel less worthy of their place at an institution, different compared to their peers, and continuous pressure to behave and academically perform to an allistic standard (Cage & Howes, 2020). Consequently, this can cause emotional dysregulation, where a conflict exists between presenting a socially acceptable version of oneself and the actual inner self (Pearson & Rose, 2021). Coined as “masking,” this can be exhausting to ASD students, often leaving many to take time off from studying, avoidance of studying altogether, and internal conflict with trying to conform to societal expectations and demands (Radulski, 2022). However, it has been observed that when ASD individuals advocate for their required needs and intervention to function, many often feel shamed, diminished, and recoiled into not advocating for themselves (Hernández-Saca et al., 2020). Even when the individual has spoken out, they are still against the implicit biases of those within the academic institutions (Dickter & Burk, 2021).
However, there lies a considerable paradox in this action. The educational system appears to be designed as reactive and not compassionate. That is, earlier intervention and awareness of the subtleties of ASD could have been detected earlier, thus providing the appropriate specialist staff to intervene. Secondly, the removal of the ASD individual can automatically ostracize the person from their usual understanding and framing of the world (Bowden et al., 2022). Donelson (2020) argues for an alternative to suspensions and expulsions, as they often found that autistic individuals who were expelled from school had poor emotional well-being. The removal action can potentially reinforce already present negative stigmas and perceptions of oneself to others (Cleary et al., 2024). This often leads to a “us” vs. them stance, where only the negative behavior of the ASD individual is recognized, not the shortfall of the environment or situational context amongst other variables involved (Dinishak, 2022).
Despite slow progress, initiatives are being implemented in the UK to ensure enough suitably qualified support staff within the education system. For example, in England, as of 2024, the Government pledged to invest £850 million to improve services. This includes creating new mainstream and specialist schools and improving current architecture to ensure it is accessible for current pupils. Regarding young people entering work, as of 2024, a 12-month mentoring program was launched to help support those completing apprenticeships with learning difficulties and disabilities. The scheme enables the supervision of providers and their mentors to ensure they can provide apprentices with the support they need (Mediaofficer, 2024).
An ongoing initiative that has risen within the last decade is that several universities in the UK offer appropriate mandatory modules and training to ensure continuing professional development, which is often cost-free. However, staff members who work with disabled students within the remit of teaching and learning have yet to be advised to undertake mandatory disability training. We are fortunate within HEIs to be a part of the neurodiversity movement that is slowly gaining traction, which respects diversity regarding perceptions, fostering a positive acceptance of many ways of thinking and being, which contrasts with the former deficit medical discourses presented (Oredipe et al., 2023). As stated earlier, this content aims to provide surface-level knowledge and awareness rather than incentivized content to become a specialist.
3. Myths and Misconceptions
Despite progress with the neurodiversity movement, there is still a substantial margin for improvement. Another contradiction lies in the misconceptions and myths currently surrounding ASD (Gini et al., 2021). It was found that during training for ASD, several staff giving the presentation and training to other staff members were often not ASD themselves but allistic (Gillespie-Lynch et al., 2022). This can be problematic and contradictory for those undertaking the training for several reasons, mainly as it does not represent an accurate picture of what ASD is like for those in education. Secondly, many of the resources and literature used are often outdated and add to the current stigma of ASD (Cheriyan et al., 2021; Turnock et al., 2022). This inadvertently can contribute to a generalizability of the disorder, whereby, in agreement with Miller (2023), it should be explicitly recognized that meeting one autistic individual is not grounds to assume another’s needs and wants. Moreover, further propelling the negative narrative of ASD is the stigma formerly. Despite historically reducing over time, the negative underpinning of ASD in its earlier days, such as asylum treatment and psychosis intervention (Waltz, 2023), may undoubtedly influence attitudes, especially in the case of differing generations of educators (Grinker, 2020). Generational factors should also be considered within education, whereby a study by Park & Chitiyo (2011) identified that younger teachers were more positive and perceptive of ASD individuals. In contrast, older teachers were typically more negative towards ASD (Mouzourou et al., 2011). It sheds light on several variables that influence these attitudes. Conversely, it does not diminish the inherent biases that may be projected onto ASD learners (Jones et al., 2021). A poignant example is the deficit approach to ASD (Kapp et al., 2013), which appears to be overtly present within education, with a focus on what is “wrong” with ASD individuals. In combination with societal norms, conforming to the “norm” is expected from an ASD individual, sometimes without consideration of the cost to the individual. However, it appears the reverse is often not expected from ASD individuals projected on an allistic individual (Lawson, 2020).
It is essential to recognize that ASD has been ever-present within education and often disguised as other conditions or not at all. A timely example is the representation of ASD in females and how it manifests. Stereotypical profiling and gender bias can mean the signs of ASD in women in education are often missed. Subsequently being misconstrued as personality traits (Kentrou et al., 2024), hormones (Rynkiewicz et al., 2016), and co-occurring difficulties such as concentration often associated with attention deficit hyperactivity disorder (ADHD) or language-related difficulties associated with Specific Learning Differences (SpLD) such as Dyslexia (Kennedy & Banks, 2011). Consequently, several women receive a late diagnosis when entering adult education, if not at all (Bargiela et al., 2016). Thus, it calls into practice perceptions of ASD in females and how it can differ from male individuals, specifically in an educational and evaluative context (Grove et al., 2017).
4. Conclusion
This brief review provides a multifaceted perspective on the contradictions involved with ASD education from an allistic perspective. This review highlights and penetrates the potential errors within the current system and brings to account what could be addressed to improve the experiences of those studying and working in education with an ASD diagnosis. As knitted throughout this review, it is not an accusatory perspective on the current workings of ASD and education but calls for a reform of the process involved. Comprehensive providing suitable accommodations and adjustments for those with ASD to ensure an inclusive and accessible environment that does not bring harm, self-esteem, or physical difficulties. The premise of this review is that a Boolean narrative of ASD has been provided about the educational system within the UK. It, therefore, ignites a debate for continuous education and awareness among staff working with ASD individuals in education. Additionally, the rising prevalence of ASD in education identifies a further need for resources and training for specialist staff that, by default, does not put untrained staff in positions they are unable to accommodate or are not qualified for. Therefore, the scarcity of staff should also be addressed from both a personal and prospective position.
Misconceptions and myths surrounding ASD were also briefly identified, and although considerable progress has been made, there is still room for improvement. Granting generational, cultural, and other societal norms and biases cannot always be accounted for; they can be strategically capitalized as a diagnostic indicator of educational opportunity. The difficulty is, therefore, threefold: the ASD individual feels the need to conform to a specific “normative” persona, the educational staff that is teaching the ASD individuals may also subliminally project their inherent biases and discrepancies, and finally, any attempt to remedy misconceptions, is often met with outdated or inappropriate training that does not reflect the ASD community accurately. As stated earlier within the review, if the roles were reversed, an ASD individual would not provide information and guidance on allistic expectations, therefore raising questions as to why it is socially acceptable when reversed. Addressing such questions is beyond the scope of this review, and hence, further research and future work need to be conducted. Partly, to ensure a holistic approach to ASD and education is addressed. Further qualitative and quantitative studies will be included that review the critical themes of ASD representation in education and measure its accessibility and inclusiveness. As such, a multifaceted approach to ASD is needed, calling expertise from psychologists, medical professionals, educators, and ASD individuals alike. Establishing that what brings ASD and allistic individuals in education together is worth more than what sets them apart.
Acknowledgements
The author is grateful to fellow education staff who work with autistic individuals. Furthermore, the parents of learners and students themselves have helped shape and contribute to this paper.