Lately I have been getting rather irritated by certain things in the “Autism” community. I put quotations around the word Autism because I am not referring to actually autistic people, I am referring to those who claim to speak for us. The doctors and researchers and groups and therapists and other so called professionals that claim to work with autistic people. The idea that they work with us is actually quite laughable, because to me it seems they are working against us in so many ways. And then there are the “autism parents” who are not autistic but use the condition -that is not their own- as their identity somehow while simultaneously yelling at us to stop calling ourselves autistic because we are not our diagnosis. They push person first language and say we are people and yet treat us like we are less than by speaking over us and ignoring/dismissing us when we do try to speak. They push person first language regardless of the fact that the majority of autistic people prefer identity first. And lest we forget, they also use the dismissal tactic of “there are more important things going on than language”. I love that one. It’s like they don’t know us at all and yet claim to be experts. The sheer hypocrisy of it all is absolutely mind blowing. But let’s move on from the infuriating language argument, that is still going on today -as we fucking speak- and move onto my next irritability.
Studies that claim to have found this miraculous piece of information about autistic people when if they had actually listened to us in the first place they would already know it. For example: An article in The Guardian titled A Potential Breakthrough In Care Of Children With Autism basically states that if you are understanding of the child and meet them on their level then behaviors improve. Fucking duh. This is something autistic adults have been saying all along. I’m willing to bet that if more of us were actually acknowledged then autism research and services would be more efficient than it is today. This is why we prefer organizations that include us like the Autistic Self Advocacy Network instead of groups that are constantly in search for a cure and refer to us as suffering from autism (cough autism speaks cough).
But, autistic people are such a mystery, yknow a puzzle to be solved, you might say. Well, one way to gain understanding of autistic people, this includes your child, is to ask autistic adults about their experiences. Before you respond with something along the lines of “adults able to communicate can’t possibly understand MY child because they are too ‘high functioning’,” or any variation thereof, do try to keep in mind a few simple facts. One thing, you cannot compare autistic adults to autistic children in ways of skills or ability. Another thing, you can’t possibly know a person’s struggles through text on the internet. And another, we were once autistic kids, like yours, with more than likely very similar struggles. But the difference between us is rather simple: we grew up. Over the years we gained skills and experiences, we learned things, we got older and eventually found ways to communicate. A very important piece of information is that many of us are also parents of autistic kids. That last one seems to be hard for people to comprehend. Very often when an autistic adult will try to communicate their different opinion on a matter then people respond with “well we are parents and we….” making the very wrong assumption that the individual couldn’t possibly be a parent because they are autistic. That, my friends, is called ableism. Always presume competence.
You guys, there is a ton of info out there written by autistic people from all over the spectrum. The best way to learn about a condition is to listen to those who live with it. Because we are looking through the eyes of an autistic person, who better to explain what it’s like? Seriously. Autism acceptance month is nearly upon us and I will be contributing by writing about certain things here in my blog. I have a few in the works already and am always open to topic suggestions. Some will be from the perspective of an autistic parent and others will just be information that is real and worthy of sharing. I do hope you stick around to read them.
We are not a mystery, we are not a puzzle to be solved, we are right here and ready for you to listen. All you have to do is ask.
Thanks for reading.