Changing the stigma: Autism, empathy and communication

Neurodiversity in Business (NiB) volunteer Sofie Day shares her personal reflections on the stigma around autism that she has experienced. Sofie shares that we can begin to change this stigma together and create a more accepting society and workplaces. That’s our mission at NiB – to empower employers to create accepting workplaces and neurodivergent employees to find fulfilling careers. Or as Sofie says: Change the stigma.  

There are plenty of differing viewpoints about autism. There are those who believe autism is a disorder which must be corrected, healed, treated, or eliminated. Then there are self-described ‘high functioning’ self‐advocating autistics who view autism as merely a difference, which must be acknowledged, even celebrated, and not changed, let alone eradicated, through medication or therapeutic interventions. They state that autistics are not disconnected – they are merely differently connected to the world around them1.  

Different, not less 

Autism is clinically described as including difficulties in sensory processing, communication, social contact, and recurring behaviours, including a focus on limited interests and activities. The autistic rights movement views autism as a divergent thinking approach not a disorder and wants acceptance of this neurological difference. To minimise the stigma of the autism spectrum disorder (ASD) label, some have removed the word ‘disorder’ and substituted it with the term ‘condition’ – autism spectrum conditions or ASC.1   

I am on the autism spectrum and even prior to my diagnosis as an adult in 2020, people have always wanted to change me. For example, my dad viewed my food-related fussiness as disrespect and lack of appreciation for the food and whoever had cooked it. He often sat with me until I had eaten every morsel and believed his actions would eradicate the unacceptable behaviour I displayed towards certain foods. In fact, I hated the texture of those foods and simply could not eat them. 

At school I would frequently stare out of the window. As I was spotting the intricate patterns on the school courtyard’s wall, I wouldn’t notice the children’s laughter as the teacher ridiculed my inability to remain focussed on the black board. I consequently hadn’t seen the oncoming clip around the ears to focus me back onto his teachings.  

Throughout life I had often been labelled difficult, bizarre, weird, odd, challenging, eccentric, strange, peculiar, even freaky. Yet when ‘autistic’ was suggested to me, it felt like an insult too far, the slur to top all slurs.  

I had always suffered with an unmanageable abundance of empathy, so how could I now be accused of having none? That was all I knew about autism: no empathy. The stigma was painful. I had faced severe stigma before in life due to mental health difficulties. I couldn’t face yet another disparaging label put upon me.  

However, as I delved into relevant literature and joined autism support-groups, I learned that none of the stigma was deserved.

The negative attributes ascribed to autism were simply not true.  

The way autistics communicate our abundance of empathy may differ to neurotypical communication. We often relay similar situations we have encountered to show our understanding. Others may view this as making the story about us.  

Not too little empathy, but a lack of perspective 

Additionally, our empathy focus may be on just one side of an equation. For example, in one of my previous jobs, a hostel I was managing had been without heating and hot water for over a year. I empathised with residents who had complained due to this prolonged situation, and I strongly felt the contractors and maintenance department had failed in their duties. After countless communications regarding the boiler faults, I sent an email suggesting the maintenance team come to live in the hostel for a week, as I envisaged this would inspire them into action.  

What I genuinely thought was a viable solution to the problem led to me being accused of being sarcastic and lacking in empathy towards the maintenance department.  They had been offended by the insinuation they hadn’t cared enough to fix the boiler. In fact, my empathy towards the residents had been utterly overwhelming – I was losing sleep because I had been unable to improve their living conditions.  

I was informed that repairs had, in fact, been done but had been unsuccessful and extremely short-lived. The boilers needed replacing at great cost to the organisation, requiring negotiations between the company and the landlord and numerous financial approvals. This led to the extensive delay in the situation being resolved. I was informed I should have guessed the resolution wasn’t simple. With my focus solely  on improving the plight of the staff and residents, I had indeed failed to consider potentially valid reasons for the lack of progress.  

Changing the stigma around neurodivergence 

Joining support-groups has helped me realise that a lack of acceptance was causing conflicts, generalisations, misconceptions, accusations, and stigma. When employers encounter behaviour which is the result of autism or other neurodivergent traits, they can work to understand the motivations and create conditions to better fit those who are neurodivergent. This differs from previous expectations of repairing or eliminating the behaviours as undesirable problems.  

Society and public health are responsible for supporting neurodiversity, combating stigma, stereotyping, and discrimination via civic education, training, policies and law. The benefit is that it reduces dependence on specialist health care provision and decreases poor mental health originating from all the adverse reactions to neurodiverse conduct. Appropriate interventions can additionally enhance how neurodiverse people view themselves through focusing on strengths and talents rather than shortcomings.2 Supportive workplaces can benefit the neurodivergent employee, the employer, and society as a whole.  

I no longer believe that I am any of the labels placed on me in childhood. I fully accept my autism, as it doesn’t hold any negative connotations for me. I have come to recognise and celebrate my differences, including my hyper focus, determination, and my enormous sense of justice.  

I truly hope that one day having a neurodivergence of any kind is as accepted and normalised as being left-handed. Once upon a time that neurodivergence too was punished: my 62-year-old uncle Harry can write with both hands because he wasn’t allowed to use his left hand in school. Nowadays nobody bats an eyelid when a child shows a preference towards using their left hand.  

I believe we can reach this status quo for most neurodiversity labels. Together, we can change the stigma.  

References 

1. Leveto, J. A. (2018). Toward a sociology of autism and neurodiversity. Sociology Compass, 12(12), e12636. 

2. Sonuga-Barke, E., & Thapar, A. (2021). The neurodiversity concept: is it helpful for clinicians and scientists?. The Lancet Psychiatry, 8(7), 559-561]