What would the parent of an autistic child do without the internet? Ever since the word “autism” entered our vocabularies back in the spring of 1999, the internet has provided swift and immediately findable access to information, about therapies and treatments, theories of causation, other families’ experiences, autistic persons’ “autiebiographies,” stuff I would never be able to find in any store I could drive to (and drag Charlie to). Email and blogging have made it possible to have regular communication with other parents, with autistic persons, with friends (me talking on the phone too much and for too long irks Charlie). One of the myths of autism is that an autistic person willfully chooses to be alone; nonetheless, the parent who is the chief caretaker of an autistic child can often feel profoundly alone. Perhaps one’s child can only go out to places for brief periods of time; perhaps one’s child behaviors make being in public not easy, and home—while boring—safe enough.
It was a great thing to respond to an email from Niksmom and ask readers for suggestions about what to do during inbetween time. She notes that “it really helps to connect with all of you”—and I have to reiterate her words, it really, always helps to connect with all of you in cyberspace (and sometimes in reality).
Tomorrow at 12 noon (EST) there will be an opportunity to connect via an online discussion with Roy Richard Grinker, an anthropology professor at George Washington University, the author of Unstrange Minds: Remapping the World of Autism, and the father of Isabel, who has autism. The discussion is being hosted by the Chronicle of Higher Education. Prof. Grinker was recently profiled in an article, Autism Unveiled in the Chronicle and cited in another article, Is There an Autism Epidemic?; in a recent MPR interview, he spoke always with hope and compassion for autistic persons and for their families, and maintains a positive focus, whether discussing controversial topics such as the autism “epidemic” or practical matters such as mainstreaming. You can also submit a question to Prof. Grinker in advance.
“Only connect” E.M. Forster wrote in his novel Howard’s End. These words can be a sort of mantra for autism parents, given the communication challenges autistic children have, and given the isolation that families and autistic persons too often feel themselves in. “Live in fragments no longer” is how Forster puts the urge “only to connect,” and you never know what you might learn about making a few moments a bit easier for oneself—for one’s child, most of all—when you enter cyberspace.
I’ll quote Niksmom again: “it really helps to connect with all of you.”
AJ: And then we’d probably all check our cell phones to make sure everything was ok on the home front……… Yes, our kids are perfect for us. The book manages to be upbeat and always honest and realistic, and Dr. Grinker’s tone is kind-hearted and compassionate.
And hope to actually meet one of these days!
I just got emailed the link to the Chron article today, and I must say that this was (other than AutismVox) my only other exposure to Dr. Grinker’s writing. I’ve been hesitant to read this book, but only because I’ve been hesitant to read MOST books relating to autism (autism overload?).
But, I must say, after reading the Chron column, and RE-reading several of yours, I think I have to have this book. His positivity, YOUR positivity…have convinced me that my way of thinking about how autism affects our lives….with one NT child and two ASD children….is how I will continue to think and feel. I remember awhile back, Sal from “Octoberbabies” asked (and I paraphrase), “If there were a pill which would cure autism, would I give it to [my child]?”. I can’t say that I would. I have changed my phraseology….I don’t refer to my kids as “autistic”, I say that “they have autism”. It makes up so much of who they are, and it makes them different. It makes them perfect. Perfect for us (credit given to one of your other readers).
Yes, Dr. Grinker’s book is on MY summer reading list. (End-of-school is almost here….we’ll be at the bookstore soon for the required reading lists!)
I don’t think I could get through a week, a few days, a day without my Internet connections….though I’ll admit I wish I could meet some of my favorite autism moms face-to-face. I think we’d fall upon each other’s necks with tears and laughter!
AJ
I’ll make the connection!
Sorry to do this again, but would you please convey to Joey’s Mom my happiness, on finding out that the waxing is waning?
Oh, BTW,”Wax” is so much more accurately onomatopeic (sp?) than the common slang word, “ralph.” I think we need to popularize the “wax” word.