But then I got to remembering what we’d had for Caley when she was growing up. Chewelry? Caley had a makeshift plastic necklace that my mom had hung a piece of flexible plastic tubing she’d cut off and strung on it. Weighted blankets? My mother hand sewed a blanket that she inserted weights in that she’d bought from the store. Even much of her home-therapy materials pre-diagnosis were made by hand. I still remember helping Momma fill up giant tube socks with beans to serve some therapy function that, as an elementary schooler myself, I didn’t fully understand. There was no easy-access catalogue like the one I just got mailed, at least not a mainstream one that Momma knew about. All we had was us and whatever the therapists happened to give us.
Moreover, when Caley was diagnosed back in 2002, we didn’t have Internet at home. There was no Amazon to go and purchase these things. There were no online discussion forums (at least none we had access to) where she could go and chat with other parents of autistic children, much less autistic people themselves. She couldn’t just go and Google “autism” and learn from what came up. Books and VHS tapes, that’s what she had. (And that is far more than previous generations can claim.)
Momma told me that when Caley was diagnosed she went to the book store and bought up all kinds of books on autism. I remember seeing them in our house, pages flagged and marked where Momma had read something important. And there really was no good way to look up second opinions about what the experts who wrote these books had to say – it was simply, whatever they said went. She also borrowed some VHS tapes about autism and ADHD from the therapists. I remember sitting there watching them with her, feeling like it was my duty as a sister to learn something, but more than that, feeling it was my duty as a daughter to support my mother in her quest for knowledge. I may not have understood everything that was going on, but I knew that this was important to her, and I think I even understood a little bit that it was a hard time for her. I also remember being very, very bored (I was an elementary schooler, after all).
Sometimes, I think we get caught up in how much has yet to be done in our society for autistic people and their families, overwhelmed by the daunting task of it all, that we don’t realize how very far we’ve already come. Back when Caley was diagnosed we’d already come a long way – at least there were books that we could turn to, and it was no longer considered accurate to blame the parents for their child’s autism (although not all professionals had gotten the memo yet, as my mom discovered).
And now, now we’ve come even further. If you want to know about autism, there are a plethora of free websites you can turn to. Want to go buy some therapy materials? Just go check Amazon. Not sure about the effectiveness of an intervention that friend of a friend told you about? Try Google Scholar. And if your child is having a meltdown in the grocery store, as my sister often did growing up, you can explain to the employees that your child is autistic and have a reasonable chance of them having an idea of what you’re saying, rather than thinking you’re telling them about your child’s artistic inclinations. What’s more, you can read the writings of autistic adults who have forged the path for the current autistic children of the world. And each time you gear up for that IEP meeting where you have to battle for your child, you benefit from the many parents who have fought those same battles before you. (Though it certainly doesn’t feel like it at the time.)
Though there are new challenges, we have come so very, very far in such a short time. So whenever you’re feeling hopeless, like the task of autism understanding is just too large for you to burden, look back on that. You’ll see that the trend is shooting ever higher and, if you’re like me, that will give you a whole lot of hope for the future.
Thank you to my Momma, and to my sister, and to all the other mothers and fathers and children now-adults who have fought their way to make the society we live in today that much more friendly to autistic people. I know it’s been hard, so hard. But your efforts continue to pay dividends.