The Power and Use of Language when Describing Autism

​Language is important and it reflects how society perceives and understands something. Language also  changes and evolves. We have the power through our language to influence attitudes towards autism as well as impacting a person’s self-identity. Language can also both stigmatise or empower autistic people.

Terms that were once in common usage such as “High Functioning”, “Aspergers”, “Autistic Levels”, and “Severe Autism” have become less accepted by the autistic community. For decades, language surrounding autism has evolved and using these terms can lead to the autistic community feeling unseen. It reinforces harmful stereotypes that the autistic community have worked hard to disprove.

Your Voice has engaged with the autistic communities across the South West, we have heard how the use of these terms and words are still effecting the lives of autistic people. They have been used by those in health and social care, and as these workers are deemed to have expert knowledge, interactions with them can feel unsafe or even harmful. Because of the misuse of language to describe autistic people, health inequalities are formed.

Autism is a spectrum condition, meaning no two people on the autistic spectrum are the same and everyone has various needs, and ranges of support required. This is why the autistic community disregard the terms ‘High Functioning’ to ‘Low Functioning’ or ‘Very Autistic.’ These terms are not very good at describing the variety of needs an autistic person experiences. Categorising autism in this way, is based on how society views autistic people and how they function in society. It does not take into consideration the autistic ability to be able to mask struggles and difficulties.

Masking should not be trivialised. It is the process whereby an autistic person supresses their natural behaviours, emotions and communication styles in order to fit in with society’s norms and expectations. Masking can be learned at an early age and is quite common in autistic women and girls.

Masking also has a huge effect on a person’s state of wellbeing and has many long-term effects. Mental and Emotional Exhaustion is a large side effect of masking due to how emotionally draining it is. Many autistic people have increased anxiety and depression to the overwhelming social interactions and energy required to mask. 

It is harder for an autistic person to recognise and embrace their own self-identity due to masking, this is why it is especially important for society to accept those on the autistic spectrum to create a welcoming environment for self-acceptance and self-nurture.

Someone who society might consider as ‘high functioning’ may have difficulties in other areas of their lives which society does not see. They may need support in order to manage and understand complex emotions, changes as well as everyday tasks and living and support to stay in work. The perception that someone may be ‘high functioning’ may stop someone from seeking support in the areas that they do need help. For example, in a meeting with a health care professional, an individual was told ‘You’re high functioning and you don’t need social support.” 

This presumption the health professional made is entirely based on how the individual presented. It is wrong and had a significant impact on the person’s ability to have the right support and the ability to gain support in the future. They did not pursue a referral for social care support, as this health professionals comment made them believe their social struggles were not significant enough. Years later, they found this not to be true and at this point they were in burnout due to the effect of not having adequate support. This meant that they had to continue struggling due to the impact of the terminology used in the meeting.

The Your Voice network is full of people who would be considered ‘High Functioning’, yet the health inequalities they face are significant. Those who are often considered to be “High Functioning” are autistic women and girls who often adopt neurotypical and socially acceptable ways to fit in and mask their natural selves.

Finally, language used to describe autistic people, is more than terminology, the tone and framing around autism can reinforce harmful and negative stereotypes that the autistic community have tried to disprove. The impact of the wrong terminology especially if used by those used in the medical profession is huge and can lead to health inequalities and ongoing mental health issues from the cumulative effects of misunderstanding.

Autism, cannot be ‘fixed.’ We should encourage those to emphasise the strengths and talents of autistic people and the huge diversity of the autistic spectrum which in turn, can promote a positive perspective.

Language plays a critical role in shaping society’s narrative about autism. It is also important to listen to those on the autistic spectrum and respect their preferences around the language as everyone is different.

By using the language, which is inclusive and accepting, it honours those with the lived experience of the condition and can create a society where autism is understood, accepted and celebrated.