April is Autism Awareness Month; or April 2nd is World Autism Awareness Day. (I've been seeing conflicting info on this.) I have been going through these past five months being glad that there is such an awareness of what Autism is and is not and the destigmatization of it in the past five years or so. And then I realized that just because I had become more aware of it in the past few years does not mean that all others/society had been going through the same learning process I have. Maybe I've just been hanging out with and facebooking with people who share information about Autism, but that's not necessarily representative of the whole of society. So what can I add to Autism Awareness? I just started this! I'm still barely learning about what this means for my daughter and my family. But already I've encountered some attitudes and comments that, in my raw/new to this state, have come off as frustrating or hurtful. So, if you do not have a child with Autism, but you encounter someone who does, please keep these in mind?
1) If you've met one kid with Autism, you've met one kid with Autism. Autism is a broad spectrum with such a wide range of severity and behaviors. Please don't think that just because something worked for some other Autistic kid that you know that it will automatically help us.
2) If you don't have a child with Autism and you're not a specialist who works with Autistic kids, please, just keep any advice to yourself unless I specifically ask. It's such a different brain wiring that what you think works for your kids isn't likely going to translate well to mine. It's like a non-parent trying to give unsolicited parenting advice to parent with several kids.
3) Trying to "reassure" me that this is something she'll grow out of/ nothing to worry about/ all kids her age do X does not reassure me. It comes off to me as dismissive of a very real condition that needs to be seriously addressed. Minimizing my daughter's symptoms makes me think you're thinking I'm blowing things out of proportion and makes me not want to share with you because clearly you think I'm just overreacting.
4)"Everybody is on the spectrum." What does that actually mean to you, lady at the art museum? Maybe you meant to be comforting and inclusive. I wish I'd asked. Instead I was too busy running after my sensory seeker to stop her from trying to eat paint to ask you to clarify. But in the newness of the complete reordering of our world, along with your tone of voice and body language, it felt dismissive. Maybe I'm extra sensitive right now. Maybe we should assume that of all the parents who you've only just met and be a bit less generalizing.
5) "I hope you won't let this diagnosis restrict her potential." Seriously?! I did ask for clarification on what that meant to the person who said that. Her view was parents getting Autism diagnosis and assuming that their children would never learn anything so never trying to teach them, or in the WAY BACK PAST parents getting a mental handicap diagnosis and shutting them up in the attic or sending them away for the rest of their lives in an institution. Seriously; she thought that my daughter being diagnosed with Autism meant that I might not try to help my daughter learn or think she has the potential to do more than maybe someday pass 8th grade. Um, no, that's not how any of this works anymore. And thanks for thinking it's a possibility that I'm the kind of parent that would give up on her child. /sarcasm
6) If you've met one parent of an Autistic kid, you've met one parent of an Autistic kid. Not all parents are going to be as sensitive as I am right now. Hopefully in a year or so from now I won't be as sensitive as I am right now. But the world could use more kindness and gentleness. If you feel like you should say something but are worried how it will be taken, maybe just try "is there anything I can do or say that would help?"
I know so much more about Autism now than I did before my daughter was suspected to be on the spectrum. I know so much less right now than I likely will a year/5 years/10 years from now. I hope that before all this happened I wasn't saying stupid stuff to parents of kids that I had no real knowledge about. If I did say something thoughtless, I am so sorry. I hope I can extend grace to those who don't realize what their comments sound like. And I hope that if you read this, if you find yourself talking to a parent of an autistic kid that maybe you'll remember that what you mean to say may not come out the way you mean it.