A Big Change
January 2, 2009 by Kristina Chew, PhD
Filed under Health
A long time ago (definitely “before Charlie,” which is “bC” to Jim and me) “someone” (she writes poetry) wrote this to me:
Poetry is life; it should change everything around it. Do only what changes you.
The lines were written at the end of a letter regarding a topic that was, at that point in time (I was about half as old as I am as I write this), of total everything significance to my life: What should I study in graduate school?
I was a Classics major in college and, finding the sustained study of Latin and ancient Greek intellectually intriguing, albeit a little wearying on the soul, I was drawn to another academic discipline, Comparative Literature; I had hopes of studying something called “literary theory” or just “theory” (as in something known as deconstruction). Should I stick to Classics, to the philological study of dead languages that I had been entrenched in since I was 13 years old? Or should I do something that seemed a bit more……daring, and venture beyond the pleasant realms of relative clauses of characteristic and indirect discourse, and the dative of possession, and learn about this theory thing?
Nearly two decades later, I can—as I think you can surmise—-only shake my head in exasperation at my younger self. Getting a graduate degree in whatever or whatever was the easy part: Holding onto my son when he was 6 years old and flailing, flailing, flinging his body and especially his head with every bit of his energy towards a manhole cover on a train platform in Newark, New Jersey—-and only wishing he’d stop, but he just couldn’t, and really especially wishing that the ring of people who were standing transfixed around us would just do something else than what they were doing (standing there and looking)——I never knew how easy I had it, when I was agonizing over graduate school programs in 1989.
Charlie was born some 8 years later and, ever since then, my life and that of my husband Jim’s had been one journey into the unexpected, of the unexpected. Charlie’s being diagnosed with autism in July of 1999 was but the moment when Jim and I, and Chariie, stepped onto a long, winding, and so often uphill road. And while I’ve still kept the collected opera of Virgil, my favorite ancient poet, close by, it’s Charlie who’s really changed everything.
To rewrite some of the words that poet once sent to me: Charlie is our life, and life with him has changed everything around us.
Because of Charlie, we’ve left jobs (a tenured, endowed position at a substantial midwestern university in Jim’s case) and moved our household several times (and there are more moves in the future, we know). Because of Charlie, everything is changed and different from what I thought my life at the forty year mark would be like, and while it’s not easy, it has been good.
And there’s a new change, a big one, right around the corner for me.
As reported, I’m blogging with Dora Raymaker about autism at Change.org starting now. The new blog is still a bit “under construction” but it’s up and running and some discussion’s started about, for instance, some autism controversies: Let me know what you think.
And yes—-I will not be blogging here as of next week. I have a lot more to say about that and it’s very hard to even think I won’t be writing at Autism Vox anymore. I created the name for the blog and have been writing it since February 2006. I’m hopeful about this change, but that doesn’t make it easier—–it’s been a long and interesting journey with Charlie and it looks like there’s a new path ahead, and I hope to continue walking on it with all of your company and community.
Because the journey is best with friends, my two great guys, and all of you—–onward, together.
Sometimes one must just enter a new path in life…
I will keep on following you … good luck!
Aspie Bird
Thanks for letting us know! I’ve just added the new website into my blogreader!
Kristina, Tom and his Dad and I wish you all the best. We’ll miss AV but will be following you to the new blog. Happy New Year!
Okay, so is AV going poof totally, or is someone else taking over for you, or what? I will be following you to the new blog as well.
Kristina,
You have always amazed and inspired me. I’ll miss this blog, but am glad that you will still be up and about on the blogosphere.
I look forward to reading you in your new role.
Joe
The new site looks very good. I think you and Dora will be a good combination. Thanks for all you do. I rarely comment, but I read often and appreciate your advocacy for autism. I hope it will make the world an easier place for my son and all autistic individuals to exist.
Kristina, AV has been such a blessing for so many people. I’m glad to know that you will still be sharing your voice with the rest of us. Good luck in the new year and all the best for you, Jim and Charlie.
I just put up a post in “AV style”:
http://autism.change.org/blog/view/in_transition
Autism Vox is going to continue—I miss it already! But I hope to make the new blog seem very familiar.
I hate change. No really, I do. But I think I can muster up some kind words:
Best wishes on your new endeavor. I will be sure to follow you at your new home. AV has meant so much to me. You inspire me every day.
A chapter closes and another opens.
Congratulations on the new blog, and best wishes to both you and Dora in your writing partnership at change.org. It’s been an interesting ride here at Autismvox, and I’m sure that it will be there as well.
Fond regards and happy new year to you, Charlie and Jim.
Kristina,
On a more “practical” and somewhat self-interested angle…is this site going to remain archived online?
Besides your considerable writing, I appreciate many of the contributed comments and details, and refer back to them from time to time.
Would seem a shame to have this magnum opus go dark.
Thanks.
I wrote to you “over there” but wanted to wish you well here, in case it was all a dream. Autism Vox is a labor of love for you; it shall be so as well in the new site.
Good for you for shaking things up!
Kristina;
Read your comments on the myths of autism and see you have now fully embraced neurodiversity. You claim that autism is genetic and cannot be cured, yet up to 25% of children diagnosed with an ASD do lose their diagnosis and recover thanks to the enrormous efforts of parents and clinicians in breaking down societal barriers to effective interventions.
What you have to say is nonsense unsupported by factual evidence. The neurodiversity crowd now claims the ‘recovery’ is a myth and at best ‘impovement’ occurs enough for some to ‘pass’ as normal. This is as insulting as those who claim that the only way for Blacks to succeed in life is to ‘pass’ as whites.
@RAJ, just regarding your last sentence—–I guess some would say the same for those of other races……. I rather think that those of us who are “different” can shake things up a bit!
I also think more than a few others have stated that recovery from autism is a myth.
@another laura,
I’m try to make my contributions to the new site as AV-ey as possible……can one be blogsick?
@Regan, I _think_ that the archives for this site will remain up. Even in writing my first posts on Change.org, I’ve still felt the need to refer back to various pieces here…………I will let you know.
Congratulations and good luck with your next “big change”. I will continue to follow your adventures with Charlie on the new site. I never tire of gaining hope and inspiration from your writing.
salut!
“I also think more than a few others have stated that recovery from autism is a myth”.
And there are others who have stated that autism is caused by vaccinations, so what. I prefer to look at the work of clinicians who have worked with autistic children for decades such as Deborah Fein who published this recent study:
http://www.ncbi.nlm.nih.gov/pubmed/19009353?
Those who try to say these recovered people are simply not recovered and are passing themselves off as NT’s are trivializing the work of dedicated parents, clinicians, special ed teachers, and speech therapists.
To say that recovery is impossible as you stated in your new blog is just as demeaning to the children and families as your complaints about stereotyping autistic people in general. You are simply engaging in a different demeaning sterotype.
Goo luck with your new blog, you’ll be in good company with the rest of the head in the sand neurodiversity crowd, whose stock in trade is trivializing a profoundly (for some) devastating neurological impairment whose etiology remains unknown despite your claims that it is genetically transmitted.
Kristina,
I wish you all the best. See you on Change.org.
Best wishes with your new project, Kristina! Hugs from Denver, K.
Wow. I’m just AMAZED that RAJ has posted here without a single reference to the “broad autism phenotype.” It’s like a holiday miracle.
Kristina, you know how pleased I am about this shift! Congratulations, and I’ve already posted over at your “new” place.
E
I went to the new site today and think it is impressive. Nice visual; well organized; good and ample information (not to say that contrasts with Vox). Wishing you all the best!
@Emily: Yes, but he still grossly mischaracterizes pro-neurodiversity perspectives. He wouldn’t know (or acknowledge!) the extent to which we actually share concerns, goals and objectives if he were beaten about the head with a clue-by-four.
So many of the cure-seeking parent activists are actually quite rigid in their thinking, so much so that they form a perfect analogue to a well-known archetype in the gay community: the strident homophobe who is as strident as he is because deep down inside he’s afraid he might be at least a little that way himself…
@Kristina: Congratulations and best wishes for you and Dora with the new blog… I couldn’t think of a better partnership!
Kristina, please work with your provider here at b5media to archive the entirety of AutismVox, in the event that it does not remain operational. I agree with Regan: there is so much here, both in your writing and in the comments, that is really worth preserving. I can’t think of how many links I’ve given out to stuff written here; it would be a shame if those items disappeared from the contexts in which reference is made to them.
Whoa! Almost missed this….see you at the new site. I also like the name “Autism Vox”…can see why you would be sentimental.
Congrats and I just signed up at the new spot. I also hope to see this site archived so that not to miss all this info/data/links. Is someone new coming here?
Congratulations, Kristina! I’ll try to keep my whining about the change to myself and not my comments.
I would love for this blog to stay open as an archive, if it’s possible (I understand that paying the hosting/domain fees may not be feasible). It’s a lovely resource and, selfishly, I still haven’t finished reading everything I might want to.
Kristina,
Mazel tof for the new endeavor. I shall certainly bookmark your new site.
I would also ask that Autism Vox be kept available to the public. In the early days of my son’s dx, what I discovered on Google U was frightening, confusing and disheartening. When I discovered your blog, it was a breath of calm in a sea of panic. I hope that future parents and autistics have the same opportunity of discovering a different view to the autism spectrum.
Many thanks for that!
Kate
I’ve asked b5media about keeping this blog up and will post here when I find out! Thanks everyone—-I wish I could print out every post and comment, frankly, so many wonderful messages—-
“And there are others who have stated that autism is caused by vaccinations, so what. I prefer to look at the work of clinicians who have worked with autistic children for decades such as Deborah Fein who published this recent study:”
-RAJ
You forgot to mention there is a well-established field of medicine–psychoanalysis, which includes Stanley Greenspan, the founder of Floor Time–that insists autism is caused by infantile trauma.
Of course, Kristina knows best because she studied Latin in college.
I can speak ancient Sumerian:
Fizz. Goop. Whap snope mimbo!