The way we talk about autism does matter

I am an autist and I also have many years of professional experience with people with disabilities. I have noticed that the notion of autism is developing extremely fast. For this reason, I would like to explain what this development is about and tell you why the autistic perspective is important when trying to improve life for autistic people.

Having autism version being an autist

Very often, you can find online debates on whether one should say “she has autism” or “she is an autist”. In my experience, saying “to have autism” is mainly used by professionals and parents. However, you will also find autists who prefer to say that they have autism. This conveys both an external view and that autism is just a small part of the person seen as a whole. On the other hand, most autists prefer to use “to be an autist”. This mirrors the fact that autism is part of our identity. At the same time, it conveys that autism is a neutral, describing word.

Who decides what “autism” means?

Not only pedantry causes the use of words to be discussed so intensively. To a great extent, this “fight” is about the actual meaning of the word “autism” and who gets to define it.

Non-autists have always been the ones to define what autism is. If you look at the diagnose criteria in the currently valid ICD-10 from WHO, certain trends become clear very quickly:

• Autism is described from an external point of view: behaviour that a psychiatrist is able to observe
• Autism is described by means of words such as deviance, disturbance, reduced, stereotype and obsessive-compulsive
• Mainly children – and mostly boys – are described

These diagnosis criteria have far-reaching consequences with regards to our understanding of what autism is. First of all, the diagnosis criteria do not describe the lived experience seen from the insider’s viewpoint. Sensory disturbances are an important example of this. Today, we know that sensory disturbances make up a very central part of autism; however, they do not feature within the diagnosis criteria in Denmark. I know a lot of sensory-diagnosed autists who basically do not recognise themselves within these diagnosis criteria. Only after having read the insider descriptions from other autists does an autism diagnosis make sense to them.

The diagnosis criteria describe how the autist deviates negatively from the norm. For this reason, “autism” sounds negative to many people. But to many autists, their qualities are not (only) negative but rather meaningful and rewarding. As an example, “stereotype and obsessive-compulsive behaviour” might express an intense focus on details or a way of handling disturbing sensory input. And to autists, such qualities might be an important source of personal joy and acquisition of knowledge and skills.

Finally, the subconscious concept of autists always being boys contributes to making both autistic girls and adults invisible. Therefore, many girls and adults are not given access to an autism diagnosis. This happened to me; I was not diagnosed until the age of 34. Another important consequence is that until recently, the most prominent topics within the debate about autism were controlled by professionals and not least by parents. The autists were always the subject of the debate but never debaters.

Autistic activism – autistic pride

Thankfully, this trend is now changing. Many autistic activists are working on redefining what autism can be. This relates to their own lives but also to many debates on the social media, both nationally and internationally.

To a great extent, this is about acknowledging and focusing on autistic perspectives, needs and human rights. In this way, as a society, we are able to embrace the complexity of autism both being a disability and an identity. This means that autists have special needs but also special competencies and qualities that are indeed needed in society.

Through my own work at Specialisterne, I have experienced how we are doing well in creating a micro-cosmos in which autistic employees and students are able to thrive and grow on their own terms. We understand the complexity of autism being both a disability and an identity. I hope that the entire labour market will benefit from us, the autists, and our far-reaching competencies in the future.