Content warnings: Ableism, mental illness.

 

Have you ever read something that just makes everything click into place? For me, it was that autism is characterised by a difficulty in forming and understanding ‘second-order representations’1. Let me explain:

 

A ‘first order representation’ is the face value, the direct interpretation of an object or event. 

 

A ‘second order representation’ is the underlying meaning, the non-literal association with an object or event. 

 

Autistic people struggle with the latter. Allistic (non-autistic) people don’t, and for them it’s intrinsic in a large part of communication – nonverbal cues and gestures, sarcasm, undertones, passive aggression, politeness and more complex events like communication of social hierarchy all take place beneath the veneer of explicit communication. They rely on the ability to interpret another’s actions based on extrapolating their perspective. Rather than being automatic for autistic people, doing so is a learned, active behaviour, and one that is taxing to maintain and use.

 

Reading this explanation was epiphanous for me for two reasons: it concisely explained why I and other autistic people I knew had such trouble navigating and communicating in social interactions, and it clarified why conflict and miscommunication arose so frequently. It contextualised and validated the way I experience and understand the world.

 

Autistic communication is direct, predominantly using first order representation. It doesn’t soften effect or hide meaning with subtext; conversely it has difficulty picking up on inference and implication from others. So many times I have answered questions or followed instructions ‘incorrectly’, because I’ve addressed the words and not the implied meaning underneath. Much of boundary setting and emotional communication in social relationships is implicit - are they ‘acting’ interested? Does it ‘feel’ like they are reciprocating? Can you ‘tell’ that they want to be friends? - inability and difficulty in reading those complex second order representations makes navigating those situations painful and confusing. These struggles and anxieties make it much harder for autistic individuals to make and maintain friendships (3). 

 

Sedgewick and Pellicano (3) found that both autistic girls and boys report weaker friendships with more conflict than their neurotypical peers. They experience more victimisation, autistic girls especially, from bullying and other relational aggression, and experience far more insecurity around their friendships. The authors identify “both autistic and neurotypical girls alluded to wanting to fit in, but in different ways.” The neurotypical girls in the study were more concerned with securing a place in the social hierarchy – appearing cool and fitting in with the popular crowd - whether through dating or other means. For the autistic girls it was about finding people who actually accepted them as themselves; fitting in was not about adhering to social expectations, but about finding friends where they didn’t have to.

 

Bury and Hedley (5) found much the same issues in analysing the problems autistic people face in the workplace. While the work itself was no more trouble for autistic individuals than their neurotypical counterparts, navigating the social aspects of a workplace drastically increased the stress and drain on autistic employees. Issues can arise from relative trivialities like dealing with food or birthday wishes, up to serious conflicts that jeopardise their employment. The same communication and relational issues that lead to autistic individuals struggling socially can have more serious consequences when the miscommunication and conflict arise when interacting with an authority, such as a boss or supervisor. Problems stem from unclear instructions, not adhering to unwritten or unspoken rules (social and otherwise), interrupting and socialising at wrong times – everything that relies on being able to determine and pick up on implicit communication. In other words, being autistic has career consequences.

 

Now, having anxiety or depression aren’t intrinsic to being autistic (6). They’re not part of the same dysfunction in development. However, something about being expected to negotiate a minefield of implicit communication that others grasp intuitively leads to an extreme coincidence of autism with both anxiety and depression. The social ostracism and punishment for violating rules you’ve never been taught casts a slight shadow over every interaction. The starkly increased incidences of bullying and victimisation autistic youth go through may also contribute to mental illness. Mayes, Murray and their team7 write:

 

“It is quite possible that youth with ASD (youth with Autism Spectrum Disorder (ASD) ) face considerable challenges during the transition from childhood to adolescence. Social difficulties and awareness of being different from others, especially during the teen years, may lead to problems with anxiety, depression, or hostility.”

 

They reported anxiety in autistic children ranging from 67% to 79% depending on the severity of their traits, and depression affecting between 42% and 54% likewise – in comparison to anxiety occurring in 8% of children and adolescents8 and depression in 5% of children, 17% of adolescents13, and 5% of adults12 overall. Similar figures are reported by Susan White and her colleagues in their meta-analysis “Anxiety in children and adolescents with autism spectrum disorders”. The social deficits autistic individuals endure lead to social anxiety by increasing the likelihood of negative interactions9 and then that anxiety makes interaction with others more difficult, perpetuating the cycle. 

 

It’s clear there’s an issue here. Despite no biological link, autistic people suffer far greater rates of depression and anxiety than their neurotypical counterparts. They find friendships more taxing, worrying, and less fulfilling due to impossible unrealistic expectations of allistic communication and understanding. They’re far more likely to be the target of bullying and victimisation than their neurotypical counterparts. Autistic adults suffer in their careers and employment due to a lack of accommodation and recognition. But it doesn’t have to be this way. Growing up neurodivergent shouldn’t be traumatic. Existing as an autistic person shouldn’t be fraught with conflict.

 

I don’t know how we will get to that point. It feels like there are a hundred facets to the issue, each their own problem and needing their own solution. That being said, all solutions need to stem from an understanding of autism and autistic individuals. So, what does it mean to be autistic and how can we navigate those communicative differences?

 

The social aspect of autism arises from a deficit in ‘Theory of Mind’, which is the capacity to interpret and conceptualise another’s thoughts, beliefs, emotions, and intentions (1, 2, 9, 10). Second order representations are the events in which Theory of Mind is used to interpret their meaning – and so a disorder in Theory of Mind development affects the ability of an individual to use and understand those second order representations. Essentially: autistic individuals struggle to interpret and conceptualise other people’s thoughts, beliefs, emotions and intentions. 

 

What does that mean for communication? As mentioned earlier, it leads to this a twofold miscommunication between autistic and allistic people, where autistic people don’t see meaning where it is, and allistic people see meaning where it isn’t. This is known as the ‘double empathy problem’ (2). But it isn’t just a communication deficit on the part of the autistic person – the disconnect is due to two entirely different communication styles. 

 

Allistic people use second order representations readily and frequently. They’re able to infer other’s perspectives with ease and conversation is based around these assumptions. Gestures, body language and inference are used to convey meaning and assess receptiveness. If the wrong assumptions are made, it can lead to ‘fragmenting’, where there is a cost to getting it wrong and the conversation is disrupted (2). It may not be relationship-damaging every time, but people do pick up on misread cues or intentions and often the only indication a mistake has been made is given through those same implicit communications. The creation of a shared understanding is known as ‘intersubjectivity’ (1, 2). Allistic intersubjectivity is managed through these second order representations, where the shared understanding is outlined and defined implicitly. Autistic people don’t have the same ability to interpret second order representations, so rather than probing or assessing what others have in common, they essentially have to guess. As a result, autistic people can seem appear egotistical or self-interested (2) when they spontaneously talk about an interest of theirs, or suddenly change the topic of conversation. In actuality, they’re trying to find common ground. Because finding that initial mutuality is harder, autistic individuals also place far less of a social cost on getting it wrong (2) and so while intersubjectivity may be harder to initially reach, there’s far less penalty for trying and failing. If these bids for connection are reciprocated, it can creates a “rich intersubjective space for shared understanding” (2). 

 

These two elements of autistic communication come together to form a coherent communication style. Heasman writes “The generous assumption of common ground and the low demand for coordination are more than two isolated features; they potentially fit together into a functional system that allows rich forms of social relating” (2). The autistic communication style only appears to be dysfunctional when “[placed] against the cultural backdrop of neurotypical norms and expectations” (2). Another way to look at that is that autistic people don’t need ‘extra’ accommodation or compensation compared to allistic people – allistic people just have all their needs already met. They’re already accommodated for, but it’s such a cultural norm that it’s not even perceived as being so. 

 

A metaphor for the two types of communication is that of an allistic person and an autistic person trying to set up fishing rods along a river. The allistic person knows where the fish are - perhaps from reading the movement of the water - and sets up all their poles in that spot. The autistic fisherperson has no such information and sets up their rods all up and down the river to try to find themwhere the fish are. Once they’ve got a few bites and know where the fish are, great! They can move all their rods and set up in whatever spot they’ve found. They just don’t have the same ability to determine where to set up in the first place. They’re not any worse at fishing (i.e., communicating) – they just have trouble knowing where to start. 

 

Autism is only a disability in an environment that doesn’t support it. As Bury noted, the only deficits in the workplace are from a lack of social accommodation – autistic individuals don’t struggle with the work itself. In fact, both Bury and Hurley-Hanson and her co-authors report that autistic individuals perform better in a multitude of areas: they have greater problem-solving, pattern-recognition and decision-making skills and a greater tolerance for repetition (5, 11). And that’s great! It’s wonderful to be recognised for the talents you have and the effort you put in. But it shouldn’t have to be justified that autistic people deserve employment and equitable treatment. It’s depressing to have your life and experience boiled down to your marketability and employability. 

 

But there is still a disconnect between autistic and allistic people. The perception of autistic people as defective rather than different prevents the integration and acceptance of autistic people into the social space and workforce. To work towards an autism-friendly society, education and awareness of the ways communication and understanding differ in neurodivergent individuals need to be ubiquitous. The hardships autistic people face aren’t because we’re autistic – they’re because everyone else isn’t. Instead of us continuing to assimilate to an allistic worldview, perhaps it’s time to meet us halfway and learn how we operate instead. 

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References

 

1. Frith, U. (1989) A new look at language and communication in autism.

2. Heasman, B. (2018) Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding.

3. Sedgewick, F., Pellicano, E., (2018) ‘It’s different for girls’: Gender differences in the friendships and conflict of autistic and neurotypical adolescents.

4. Happé, F., Leslie, A. (1989) Autism and ostensive communication: The relevance of metarepresentation 

5. Bury, S. et al. (2020) Workplace Social Challenges Experienced by Employees on the Autism Spectrum: An International Exploratory Study Examining Employee and Supervisor Perspectives 

6. White, W. et al. (2009) “Anxiety in children and adolescents with autism spectrum disorders.”

7. Mayes, S.D., Calhoun, S.L., Murray, M.J. et al. (2011) Variables Associated with Anxiety and Depression in Children with Autism.

8. Bernstein, G. A., & Borchardt, C. M. (1991). Anxiety disorders in childhood and adolescence: A critical review. Journal of the American Academy of Child and Adolescent Psychiatry

9. Bellini, S. (2004) Social Skill Deficits and Anxiety in High-Functioning Adolescents With Autism Spectrum Disorders. Focus on Autism and Other Developmental Disabilities. 

10. Brewer, N, Young, RL & Barnett, E 2017, ‘Measuring Theory of Mind in Adults with Autism Spectrum Disorder’

11. Hurley-Hanson, A. (2020) ‘Autism in the Workplace’, Palgrave Macmillan

12. Institute of Health Metrics and Evaluation. Global Health Data Exchange (GHDx)

13. Selph, S. (2019) Depression in Children and Adolescents: Evaluation and Treatment