By Dr Michelle Garnett & Prof Tony Attwood
One of the core difficulties of being autistic is understanding other people, that is, reading their facial expressions and body language, and inferring what they think. What does this really mean and how does it play out in the lives of autistic adults and their relationships with other people?
Social Experiences of Autistic Adults
A study by Crompton and colleagues (2018) described the social experiences of twelve autistic adults. Findings showed that the autistic adults’ own communication styles differed substantially from non-autistic communication styles, and the differences required a high amount of mental energy and effort. Particularly effortful in navigating the communication gap were the tasks of reading facial expressions and determining and pre-empting unspoken social rules. A common experience was increased feelings of anxiety in advance of spending time with non-autistic family and friends, and subsequently experiencing exhaustion and emotional fatigue. In contrast, when they interacted with autistic family and friends, they described increased feelings of comfort and ease because communication styles were similar. They were on the same communication ‘wavelength’ and felt less need to mask or camouflage and felt more acceptance of their autistic behaviour and ways of interaction. A commonality was finding a sense of belonging and being allowed to be their authentic self. Benefits to mental health were also recognised. One woman described how, “There is no pressure to talk. If there are silences it is not awkward, shared understanding that silence is nice.”
The theme of autistic people finding non-autistic people difficult to relate to was explored further by a group of researchers in the UK led by Peter Mitchell (2021). This article describes how being misunderstood or misperceived by others could increase barriers in participation in social experiences for autistic people. The study is interesting because it is one of the first to explore the difficulty non-autistic people have in understanding autistic people, rather than the other way around. Milton (2012) first described the conundrum as the “double empathy problem.” In other words, there could be difficulties in cognitive empathy (the ability to read other people’s facial expressions and body language) in both directions.
Autistic people, because they are in the minority, often try to hide or camouflage their autism specific style of social interaction, and instead adopt an interaction style that is neurotypical (Cook, 2021; Mitchell et al 2021). So far there has been very little research into the effect of this coping strategy, but early research indicates a link between camouflaging and poor mental health (Cassidy et al, 2014, 2018, 2019).
Why try to hide that you are different?
We know that it is still the case that autistic people pay a very high social penalty for being different. Some of the social differences in autism can include valuing honesty above social politeness, not enjoying or participating in small talk, taking time to respond in a conversation, and using les eye contact and facial expression than non-autistic people expect. There can also be differences in how empathy is expressed. For example, from our clinical experience, an autistic woman, Holly, described that when a work colleague told the team about her daughter’s diagnosis of terminal cancer, she was overwhelmed with grief and concern for her colleague, to the extent that she froze and could not speak. Her reaction was interpreted by her work colleagues as being cold and callous, whereas in fact it was the extreme opposite, it was an example of empathic over-arousal.
In addition, there is still considerable stigma with the label “autism” in our community. One of the contributing factors to the stigma could be that the dominant paradigm for understanding autism is medical which views autism as a mental disorder for which interventions and treatments are needed and the search for a cure. For example, one of the most widely used international definitions of autism is in the Diagnostic and Statistical Manual for Mental Disorders, Fifth Edition-Text Revision (DSM-5; APA, 2022) (italics added for emphasis). It is understandable that autistic adults would choose to hide their autism for fear of being considered to have a mental illness, which sadly is still seen by many in our society as being defective and to be corrected.
Medical vs Social Developmental View of Autism
Mitchell and colleagues (2021) contrast the medical view of autism with the social development model which postulates that the autistic profile of abilities changes depending on the responses and reactions experienced when encountering other people. In this model, a person’s behaviour is seen as being influenced by how others’ respond, and vice versa. In other words, the success of a social interaction takes two, and if both parties to that interaction are misperceiving each other, as in the double-empathy problem, the outcomes are likely to be mutual avoidance and lack of an experience of social success and enjoyment. The model proposes that through the person’s learning experience and social opportunities, the trajectory of autism can be changed. Specifically, the more aversive social interactions that occur, the more likely it is that the autistic person will feel a sense of lack of belonging and minimise social opportunities, leading to social isolation and feeling a lack of connection and loneliness. Conversely, the opposite is true, positive social interactions lead to increased sense of connection, more enjoyable social experiences and feeling connected.
The medical model would predict that the greatest difficulties in social communication would be experienced between two autistic people, due to their inherent “deficits.” In contrast, the social developmental model would predict that autistic to autistic social communication would be the most successful, due to each being able to read each other more effectively. Research investigating these hypotheses is emerging, and so far, shows evidence consistent with the social development model, where autistic people have a unique interaction style which is significantly more readable by other autistic people, compared to non-autistic people (Crompton et al, 2019).
There is evidence to show that we generally like people whose behaviour we can interpret, more than those we struggle to interpret (Anders et al, 2016). In our clinical practice, we have seen low levels of social motivation for autistic people to socialise with non-autistic people, feeling that they do not fit in, understand or like the social codes, and often feel pressure to mask and camouflage their autism which is exhausting. We know that feeling disconnected from others and use of camouflaging can lead to depression and suicidality. There is considerable research which confirms a high level of autism co-occurring with psychiatric conditions, for example, Lever & Guerts (2016) found a co-occurrence rate of up to 79%.
The double-empathy problem is not limited to general community experiences, but also affects autistic adults who seek professional support for their mental health. A recent study looked at the experience of 200 autistic adults when they sought support for their mental health problems (Camm-Crosbie et al 2018). Thematic analysis showed that most of the adults had negative past experiences because treatment was not suited to their needs and did not accommodate the characteristics of autism. The double empathy problem was articulated with non-autistic staff not understanding the thoughts and feelings of their autistic clients.
We recently received this question from a psychologist in Poland:
“I am looking for some inspiration. I have many autistic teenagers as clients, and so often they say to me that they have problems like “I’m the victim, I can do nothing to change my relations with others.” And this: “I have autism, that is why they have harmed me. Nothing will change. I am the worst person in the whole world, and no one can help me.” Any of my attempts to change their point of view seem unsuccessful. But they still come to me to talk, so I guess they need it. But how to break the wall?
What Changes are Needed?
Societal Change
Happily, during the last two decades we have seen some progress in understanding both the autistic mind and the lived experience of autistic adults within our community. Also, there is more research into this area now than there was even 5 years ago. However, currently this knowledge is held and acted upon by only a few, specifically the autistic community and the health, research and educational professionals who support them. The knowledge needs to be disseminated beyond autistic adults, their families and professionals who specialise in autism. As a society we need to shift from the medical view of autism as being a maladaptive condition that needs to be treated in some way as if it was a disorder to be corrected. The social developmental view of autism predicts that our current way of viewing autism will increase autism becoming more problematic in the person’s life.
A primary and relatively simple shift would be to have two sets of reference textbooks: one on neurodiversity to include internationally agreed definitions of autism, attention deficit hyperactivity disorder (ADHD) and learning difficulties, and another set on diagnostic definitions on mental illness, such as the DSM-5.
Change in Education for Health Professionals
Autism is currently seen as a specialist area within which professionals choose to increase their knowledge and skills. Instead, we need to see understanding autism as being essential to mainstream practice. We need our health professionals, for example our GPs, psychiatrists, paediatricians, speech pathologists, nurses, counsellors, and psychologists, to be aware of the social abilities of autism, and to be able to recognise neurodiversity and know how to adapt and accommodate neurodiversity within their communication style, assessments and therapies for mental health and other medical conditions.
Change in Schools
The social developmental view of autism proposes that societal change needs to be at the interface between autistic and non-autistic people, where there is more acceptance of both by each other (Mitchell et al 2021). Non-autistic people need to be educated to understand the different styles of social communication used by autistic people; just as autistic people are being educated currently to understand non-autistic social communication.
We begin to understand social abilities and codes of social conduct in earnest at school. Autistic children are largely being educated in mainstream schools, but are frequently being bullied and victimised, leading to poor mental health outcomes. There is a great need for increased awareness and acceptance of autism, and neurodiversity in general, within our classrooms and playgrounds. Education is needed for teachers, administrative staff, and students to understand, initially, the importance of the neurodiverse inclusive classroom and how to create one, as well as specific training in the different types of social abilities and codes used by neurodivergent people.
Self-advocacy
Our autistic community is a very heterogenous group and generalist training will not suffice to cover all variations of autism. Autistic people need to self-advocate. Self-advocacy requires communication skills, oral and/or written, self-awareness, and self-confidence. We need to provide support to autistic community members who have the capacity to self-advocate to assist them to achieve greater self-advocacy to be able to effectively communicate their needs to people who need to know and accommodate those needs, for example, their teachers, parents and other caregivers, friends, health professionals and whomever else needs to know. The same support needs to be given to parents and carers of autistic community members who do not have the capacity to self-advocate.
Embracing Autism in the Workplace
Despite their numerous strengths and abilities, autistic adults are vastly unemployed and under-unemployed. Fortunately, there are specific organisations, for example Specialisterne and The Dandelion Project, who have recognised this discrepancy and chosen to seek and recruit autistic people for specific jobs that match their abilities. In each case they have found that creating an autism-aware and inclusive work community has had far reaching positive ramifications for not only productivity but also all staff, not just autistic staff.
Where to from here?
We highly recommend engaging with us to increase your own and your organisation’s understanding of autism. We have specialised in autism for a combined 80 years and are passionate about increasing understanding autism in all sectors of the community. We work with other professionals to achieve our goal and direct you to their work also:
For Mental Health Professionals:
Our online courses, Diagnosis for Autistic Adults and Support and Therapy for Autistic Adults for health professionals interested in increasing their understanding of autism and how to provide support and treatment for psychiatric conditions that their autistic clients may be experiencing in ways that incorporate a deep understanding of autism.
For Educational Professionals:
We have created an online coures, Autism in School, for school staff, including Teachers, Teacher Aides, Principals, Deputy-Principals and School Psychologists.
Embracing Autism in the Workplace:
Our online course, Autism Working, was created for autistic adults, their line managers and work colleagues to assist to create an autism-friendly inclusive work culture based on understanding autism.
Self-Advocacy:
We can highly recommend to you the following book as a resource for autistic adults seeking to increase their self-advocacy skills. It was written by two awesome autistic women, Barb Cook and Yenn Purkis. We also recommend a book co-edited by Barb and Michelle which is seen as a seminal work in the area to give voice to the lived experience of autistic women:
The Autism and Neurodiversity Self Advocacy Handbook by Barb Cook and Yenn Purkis
Spectrum Women: Walking to the Beat of Autism, Editors Barb Cook and Michelle Garnett
References
Anders S., de Jong R., Beck C. , and Haynes, J. & Ethofer, T. (2016). A neural link between affective understanding and interpersonal attraction Proceedings on the National Academy of Science, 113 (16) E2248-E225 https://doi.org/10.1073/pnas.1516191113
APA, (2022). Diagnostic and Statistical Manual of Mental Disorders 5th edition Text Revision (DSM-5-TR), USA: American Psychiatric Association.
Louise Camm-Crosbie, Louise Bradley, Rebecca Shaw, Simon Baron-Cohen, Sarah Cassidy (2018). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism 23 1431-1441 https://doi.org/10.1177/1362361318816053
Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M & Baron-Cohen, S. (2014). Suicidal ideation and suicide plans or attempts in adults with Asperger’s syndrome attending a specialist diagnostic clinic: a clinical cohort study. The Lancet Psychiatry, 1, 142-147. https://doi.org/10.1016/S2215-0366(14)70248-2
Cassidy, S., Bradley, L., Shaw, R. et al. Risk markers for suicidality in autistic adults. Molecular Autism 9, 42 (2018). https://doi.org/10.1186/s13229-018-0226-4.
Cassidy, S.A., Gould, K., Townsend, E. et al. (2020). Is Camouflaging Autistic Traits Associated with Suicidal Thoughts and Behaviours? Expanding the Interpersonal Psychological Theory of Suicide in an Undergraduate Student Sample. J Autism Dev Disord 50, 3638–3648 https://doi.org/10.1007/s10803-019-04323-3
Crompton, C.J., Ropar, D., Evans-Williams, C.V., Flynn E.G., & Fletcher-Watson, S. (2019). Autistic peer-to-peer information transfer is highly effective. Autism, 24(7), 1704-1712.
Lever, A.G., Geurts, H.M. Psychiatric Co-occurring Symptoms and Disorders in Young, Middle-Aged, and Older Adults with Autism Spectrum Disorder. J Autism Dev Disord 46, 1916–1930 (2016). https://doi.org/10.1007/s10803-016-2722-8
Milton D. E.M. (2012) On the ontological status of autism: the ‘double empathy problem’, Disability & Society, 27:6, 883-887, DOI: 10.1080/09687599.2012.710008
Mitchell, P., Sheppard E., & Cassidy S. (2021). Autism and the double empathy problem: Implications for development and mental health, British Journal of Developmental Psychology, 39, 1, (1-18).https://doi.org/10.1111/bjdp.12350
