People Who Understand Autism Best Are Autistic

One can perceive an interesting pattern in both international and local autism discussion: autistic people are sidelined, and often absent from it. Instead, neurotypical people are portrayed as ”autism experts”, and neurotypical people also represent autistic people in matters that concern us. There are many reasons for this…and all of them are bad.

Most obvious reason is a prejudice according to which autistic people are unable to speak for themselves. If someone would accidentally be able to speak, their experience is necessarily highly subjective, emotional and shouldn’t be generalized. The idea that an autistic person with a degree is precisely as competent as a neurotypical person with a similar degree, is surprisingly difficult to digest. Besides, everyone knows that autists are socially awkward people -the sort of people who would only embarrass themselves and their associates, if allowed to step into spotlight. Prejudice and doubt concerning abilities of autistic people are seldom explicitly expressed, and often they are not even clearly defined. It is just somehow self-evident, that information about autism can not be obtained directly from competent autistic people but from their neurotypical representatives. It’s self-evident because…well, you know how autists are.

Another misunderstanding, that many neurotypical autism researchers are still trying to keep looking alive like Lenin’s corpse, are function labels. Function labeling is an approach according to which neurospectrum is not a color wheel but a line on which autistic people are set so that in one end of the line are ”eccentric personalities” and in the other end those with developmental disabilities. How could people in ”eccentric personalities” end of the line understand about life and experience of people in the other end? Answer is, that in reality, there is no line. Autism traits are complex and varying, and same person’s ability to function can vary considerably depending on their environment, life situation, coping skills and stress level. Function labels are harmful for autistic people. They have been used to refuse much-needed support from individuals labelled as high functioning, and to silence and marginalize those labeled as needing a lot of support. It is not possible to understand autism unless one accepts the fact that it is varying, ever-changing and alive for every autistic person. If function labels are abandoned, we are in position to see that in spite of considerable diversity, all autistic people also have much in common: a way of perceiving and making sense of the world, sensory environment and social interaction, sensory sensitivities, stress reactions and so on. Developmental disability is not autism. Instead, autistic people can also be developmentally just like neurotypical people (we don’t say, for instance, that developmentally disabled neurotypical people are ”severely neurotypical”). Since autists can not be fit into strict categories according to differences in ability to function, it is also not possible to tell from an outsider’s perspective, that autists of ”one sort” can not possibly understand experience of those who appear different kind of autists. There are no several different autisms- we all exist within same, living and colorful spectrum in our diverse, unique ways.

Autism is best understood by autistic people who have both lived experience and ability to reflect their experience in light of scientific research and experiences of their fellow autists. Neurotypical experts who lack living experience on autism have no comparable base against which they would be able to reflect theories and claims about autism -all they have is their own interpretation of observations that can be made by viewing autistic people from the outside. From here, we get to my final point of importance: in addition to a description of individual traits, autism should be understood as a social minority position. Understanding on what autism is, who are autistic people and what is our place in the society is also a social question and a minority question. Look closely, and you will find that autists have much in common with other, apparently very different minorities such as racialized people and immigrants. We all face very similar struggles -even many traits traditionally understood as autism traits are fit within notion of minority stress. Lumping autists together with other apparently similar kind of minorities, such as disabled people and people with mental health issues, has not brought us the support and understanding we need but marginalized us even more. It is doubtful that our position will improve before the majority starts to listen to us and respect our lived experience on autism.

Kaiao’s expertise on autism is based on background in social sciences, active participation in autistic community and lived experience. I am not an ”autism parent” or someone ”who has worked with autistic people for a long time”. The information I share will always reflect current scientific understanding, as reflected against my own and my fellow autists’ lived experience.