Three questions to help discern reliable information on autism
Today, autism information is fairly abundant. However, quality of that information is a huge issue. There is a lot of information that tells more about prejudices and subjective interpretations of its producers than about reality of autism. Some of that information is used to give credibility to actions that cause autistic people suffering or are otherwise ethically problematic. So how can we discern reliable knowledge from information fluff? For starters, it’s good idea to ask these three questions.
1.Does the information come from autistic people themselves?
There are plenty of autistic people who can communicate perfectly well. Even nonspeaking autists may be able to write clearly, fluently and intelligently. Autistic experts with proper academic credentials are available in every field of science. This fact may be less than obvious when searching for information about autism. Neurotypical experts, family members and other people who have self-identified themselves as allies of autistic people have often far louder voices than autists themselves. The reason for this is not inability or reluctance of autistic people to speak for themselves. The reason is that autistic people are not given opportunities to speak for themselves -instead, neurotypical people use their privileged position to speak over us. Often the reason is well-meaning but still harmful prejudice that autistic people are not able or do not possess sufficient expertise to discuss autism except from very subjective and limited point of view.
It is a scientific fact, that neurotypical people have great difficulties in understanding autists correctly and benevolently. Because the difference between neurotypes is difference in perception of reality, even professional experience or close relationship with autistic people do not guarantee that the person’s interpretation on autistic experience or motives for autistic behavior are somewhat right. Most reliable information regarding these things comes directly from autist themselves.
If autists have not had a central role in production of information in question -preferably also ones presenting it- the situation can be understood as speaking over autistic people, because had on bothered to search, they certainly would have been able to find an autistic expert capable of speaking about the subject.
2. How is autism represented and discussed -is this done in a manner that promotes equality and upholds human dignity?
If information promotes ideas such as curing or preventing autism, or making autistic traits and behaviors invisible, or if it presents autism as a scary risk or threat, it is ethically very problematic and very likely has other quality issues as well. Dignity of autistic people is not respected by views stating that autism is a non-desirable flaw that should be eradicated from the world. That is simply hate speech, as is presenting autism as a list of difficulties and problems. It is also good to notice, that research aiming at understanding why some people are born autistic, is research that in no way benefits autistic people or contributes to our wellbeing.
Autism is, by definition, congenital and permanent form of neurodiversity. Life with autism traits can be made easier in great many ways, but this idea is very different from ”curing autism”. Whether or not autism traits are troublesome is not dependent on how conspicuous they are from neurotypical point of view. Problematic nature of autism traits is determined by how much they cause autistic people direct suffering, meaning suffering unrelated to negative attitudes and prejudices of the environment. For instance, lack of eye contact is not necessarily a good or a bad thing -it’s a trait that is acceptable in some cultures, but not in mainstream western culture. So lack of eye contact is not a problem in itself but a culture that does not understand, that requirement for eye contact is not simple politeness that is equally easy (or possible) for everyone. High quality autism knowledge always contains the idea of supporting equal human dignity of all people. It does not represent autists as lesser or flawed beings. Neither does it, on the other hand, otherize autistic people by using sugary euphemisms in situations where same issue in neurotypical context would be discussed directly and in a matter-of-fact tone. Background assumption of high quality autism knowledge is fundamental equality of all neurotypes.
3. Is the information based on sufficient amount of source material and sound reasoning?
In case of scientific research, this problem is usually easy to spot: research has been done using too small sample size or it suffers from other quality issues so that it does not provide sufficient support for credible generalizations or general insights.
High quality popular autism information demonstrates that in addition of medical perspective, authors are aware of scientific criticism aimed at medicalization, of autism as a social phenomenom and minority status. The information shows awareness of the fact that while international autistic community is very diverse, there exists a common understanding on several key issues, for instance, what are generally approved terms to refer to autistic people and what terms are controversial. For instance, use of expression such as ”people with autism” is widely disapproved by autistic community, so its casual usage implies ignorance.
If you feel that finding information that meets all these criteria is difficult or you feel like asking ”can I trust anyone at all?”, Kaiao is happy to help you out. Autism understanding by Kaiao fulfills all above mentioned criteria. If you need materials, training or consulting support that is provided by an autistic person and utilizes expertise in social science and ethics, feel free to contact saara.reiman@kaiao.fi