Listen to what I say, not what I do

My relationship with my local healthcare provider has improved greatly since the arrival of online booking system. Making appointments online instead of calling is nice, but most important improvement is, that now the doctor can see first my written description of my symptoms instead of learning about my problem via interviewing.

I used to tell to new people I met, that I write better than I speak. I stopped doing this after realizing, that no neurotypical person ever accepted this information. They were quick to assure me -quite rightly- that I speak perfectly well. But not being able to speak is not the problem. My problem is, that -as is normal for an autistic person- my body language is muted or different from what people are used to, and as such, does not support my emotional expression like it does for neurotypical people. This might sound like a minor issue, but it is anything but minor when it means not getting my pain treated adequately, not getting a timely diagnosis, or other important information is lost in transmission. My message does not get through because my words are not taken as seriously as they would be, if I could support my words with proper body language. Even when I think I’m expressing myself quite vividly, people do not always get my emotional messages. This is a minor annoyance in everyday social situations, but when it occurs in situations such as me being in serious pain, it becomes a huge problem.

It is useless to make the autistic people responsible for solving this problem by suggesting, that they should just act or mimic proper neurotypical body language. First, because knowingly masking autistic traits is harmful and very stressful to the autistic person, but also because the chances of success for this strategy are low. For instance, I have no idea where exactly my body language goes wrong -individual situations are far too diverse for me to have any realistic hope of resolving the problem by trying to act. All I know is, that I have this problem, and that attempts to correct it by acting would most likely result in epic fail.

So we must approach the problem from a different direction. People in general, but especially those working in health sector, should understand, that when interacting with an autistic person, it is very important to listen to what they are saying. Especially, if it is a serious situation, the verbal message is as accurate description of the problem as possible. However, one should not search support for verbal information from the person’s body language. This extends even to ability to function: an autistic person may function far better than neurotypical peers while experiencing terrible pain, but this does not mean that the autistic experience of pain is any lesser than neurotypical experience. The difference is in expression, not experience. Sometimes autistic brain remains functional even in situations where neurotypical brain would be completely overwhelmed by pain, but this does not indicate how a person feels. Postponing necessary medical treatment, insufficient treatment and pain relief or not treating the patient at all have equally bad consequences for all.

Would you like to understand autistic communication better? Kaiao is happy to help! Contact: saara.reiman@kaiao.fi, and we can talk about how Kaiao could best support your organization.