When I talk to teachers, psychologists and doctors as a parent to an autistic child, I often find the interpretations people make of my child to be absurd or even preposterous. It’s a lot of focus on autistic children “lacking motivation” and “demanding to always get things their way”. Anyone who has the slightest insight in what it’s like being autistic in a school and a society that’s really not designed to meet autistic people’s needs can probably understand that covering your ears in a crowd has nothing to do with demanding to always get what you want, it’s more likely to be a coping mechanism to deal with the noise.
In these situations I usually suggest other interpretations than the ones presented to me and sometimes people actually listen and recognize it as a valid explanation. However, thats not the case most of the times. Instead I’m told that research shows that autistic kids need gummy bears to get motivated and that’s it. Not up for discussion. When this happens I really, really want to say “But I’m autistic and I know that’s not true. It’s not a lack of motivation, it’s a lack of accessibility!” I want to tell people that I have inside knowledge and make them trust me. But I don’t. I fear that they will claim that I’m projecting my own issues.
A psychologist we saw for a short while were pushing very hard for ABA and the importance of motivators such as gummy bears. Every time I suggested a different interpretation of behaviour she claimed that I was projecting some things and overestimating my child. I had told her the first time we met that I had some autistic traits and even if she never said it out loud I wonder if that was one of the reasons for why she always undermined my knowledge.
I’ve written about that I don’t dare seeking formal diagnosis because I’m afraid people will see me as less trustworthy as a parent if it becomes official that I’m autistic. I think I will be even more accused of projecting if I declare that I’m autistic and my interpretations of my child are deeply influenced by the fact that I have inside knowledge. (And just to be clear, I’m well aware of that we’re not similar in all areas and there are aspects where we differ a lot and of course my interpretations can be wrong.)
This is one more way of silencing autistic people. It seems like there’s always some reason to not value insights from autistic people.