How we Talk about Autism Does Matter

7. apr 2021

How we Talk about Autism Does Matter

7. apr 2021 | Specialisterne

I have many years of professional experience in the disability field – and I am autistic. Both experiences have shown me that autism as a term is rapidly developing. This text will explain why and how this change in our understanding of autism is happening. In particular to emphasise the importance of including autistic perspectives when trying to improve life for autistic people.

 

Having autism versus being autistic

It is often debated whether it is most correct to say “she has autism” versus “she is autistic”. In my experience, saying “to have autism” is mainly used by professionals and parents. Some autistics also prefer to say that they have autism. Using “to have autism” conveys both an outsider’s perspective and that autism is just a small part of the person seen as a whole. On the other hand, most autistics prefer to use “I am autistic”. This conveys the notion that autism is a core part of our identity. At the same time, it implies that autism is a neutral, describing word.

Who decides what “autism” means?

The incessant debate between “to have autism” versus “to be autistic” is not just simple pedanctics. In fact, the core of the debate is concerned with the actual meaning of the word “autism” and who gets to define it.

Non-autistics (neurotypicals) have always been the ones defining what autism is. If you look at the diagnostic criteria in the ICD-10 from WHO, certain trends appear very quickly:

  • Autism is described from an external point of view: as observable behaviour to be assessed by a psychiatrist
  • Autism is described using words such as disorder, syndrome, reduced ability, stereotypical and obsessive-compulsive
  • Mainly children – and mostly boys – are the scientific basis of the diagnostic criteria

The inherent bias of the diagnostic criteria has far-reaching consequences with regards to our understanding of what autism is. Most importantly, the diagnostic criteria do not describe the lived experiences of actually autistic people. The experience and interpretation of sensory data are a core trait of the autistic life experience. This is well known today, especially among the autistic community. However, they do not feature within the diagnosis criteria in Denmark. Many late-diagnosed autistic people cannot recognise themselves in the official diagnostic criteria. And it is only after reading actually autistic peoples’ accounts of their lived experiences that they realise that an autism diagnosis is actually meaningful to them.

The diagnostic criteria describe how autistic people deviate negatively from the norm. Because of the negative bias in the diagnostic criteria, “autism” sounds negative to many people. But to many autistic people, the personality traits that make them “autistic” are not (just) negative, but can be very meaningful and rewarding, especially in a positive and affirming setting. For instance, the description of “stereotypical and obsessive-compulsive behaviour” can be flipped on its head when described from an autistic point of view: this behaviour can simply be a preference for intense focus on details. Or it can be a way of coping with intense sensory overload. To autistic people, such qualities might be an important source of personal joy and acquisition of knowledge and skills.

The assumption that most autistic people are boys makes both autistic girls and adults in general invisible. Many girls and adults are not given access to an autism diagnosis for this exact reason. This happened to me; I was not diagnosed until the age of 34. Until recently, the most prominent voices within the autism discourse were either professionals or the parents of autistic children. Making autistic people silent objects, but not active participants. Recently, this is starting to change, as many autistic self-advocates insist upon having their voices heard.

Autistic activism – autistic pride

Thankfully, this trend is now changing. Many autistic self advocates are hard at work redefining what autism is. Both in terms of their own lived experiences, but especially in the many debates that take place on social media.

Autistic self-advocacy is about centering and acknowledging the autistic experience and highlighting our needs and human rights. As a society, we must be able to embrace the complexity of autism being both a disability and an identity: Yes, autistic people are disabled and have accomodation needs. But we are also a human beings with interests, skills and intrinsic worth.

In my time working for Specialisterne, I have experienced how we succeed in creating a micro-cosmos in which autistic employees and students can thrive, because they get the accommodations they need. At Specialisterne we understand the complexity of autism being both a disability and an identity. I hope the entire labour market will eventually learn to benefit from autistic people and our specialised skill sets.

Eline

Eline

Communications Assistant

The text above was written by Eline, Communications Assistant at Specialisterne.

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