There seems to be a recurring theme among disability communities that parents and families of disabled people are perceived as some sort of superhuman, angelic, saintlike people… Guess what? We’re not. We’re just people. Some of us are good people, some of us aren’t that good. But, what everyone seems to forget in these discussions of sainthood and ‘I don’t know how you do it’ is that these people, families, parents, friends, etc. aren’t actually living with the disability.
Specifically in the autism community, I see people saying: ‘I live with autism every day’. Unless you are actually autistic yourself (and there are many autistic parents – they’re not mutually exclusive), you do not live with it every day. You live with someone who lives with it every day. Sometimes, you get to take breaks from living with that person – they may go to school, you might go to work, etc. But, the actually autistic person who actually lives with it every day does not get to take a break. You do not live with autism every day – unless you are actually autistic.
Which leads me to my next point: before I started being open about being autistic, many people seemed to value the insight (there’s that word again) that I had into my autistic son’s thinking and experiences. They would compliment me on how I had taken the time to understand him, some fellow parents would seek me out to ask me for advice about something that their autistic child was doing – and they would listen.
But, now? Well, now that it’s becoming known in those communities that I am also autistic, well, my ‘insight’ is not valued anymore because it’s no longer insight, it’s now lived experience. So, my sainthood nomination has been revoked, my ability to understand my son is no longer complimented, and I am no longer asked for advice.
How does that work?