More Thoughts on Recovery After an Interview
Tuesday morning Jim and I were interviewed for an autism documentary in the making. The director and his crew came to my office in Jersey City, which is in an old single-family house, with barely any space between it in and the neighboring houses (one of which contains my college’s mailroom). Jim and I were interviewed together, which was, frankly, fun. Not that we don’t spend rather a lot of time talking to each other, but it’s a different thing to be asked questions—about autism, neurodiversity, “recovery,” how I got started blogging, when we first thought “something” was up with Charlie, how we ended coming back to New Jersey in 2001—-with the camera on you. Amazingly, Jim and I managed not to interrupt each other.
I spend (as you can gather) a fair amount of time discussing and writing about autism; Jim is in the very last days of finishing his book on the port of New Jersey and New York and it’d been awhile since some topics had come up, such as Jim’s work on the conversion narrative in autism literature (more about that in this book on autism and representation). Jim just taught a course on conversion narratives—often books with a religious topic, such as The Long Loneliness, by Dorothy Day, the founder of the Catholic Worker movement; another topic in the course was recovery, spiritual and otherwise.
It’s possible to see Jenny McCarthy book about recovering her son from autism as such a conversion narrative. As an article in the June 1st Orange County Register puts it,
By 2005, McCarthy was no longer the ditzy blonde from MTV and Playboy, but a best-selling author who wrote about motherhood. That was disrupted when her son, Evan, was diagnosed with autism.
The Orange County Register article is entitled “In the Autism Wars, she leads with her heart” and profiles Lisa Ackerman, founder of Talk About Curing Autism (i.e., TACA, a sponsor of the Green Our Vaccines rally). “Recovery” and “curing” autism and the intense emotions that parents and other bring to discussions about these came up several times during Jim’s and my interview.
Charlie was around 5 when I started to let go of “recovery” as a goal. When I thought about “recovering” Charlie from autism, I realized that I wasn’t thinking so much about what Charlie needed as what I thought I had to do as a parent. I thought I had to do everything in my power to make it possible for him to not be in special education, to go to college, to live on his own—-if I could make sure of this (I used to think), I could go to my grave in peace. And when Charlie was 5, he needed 1:1 teaching, he couldn’t read, he couldn’t really talk, and we’d done almost every educational and other (as in biomedical) treatment we could read about. Our focus shifted to the day by days of teaching and being, and listening to Charlie.
I think at that point I realized that the “autism wars” were inside of me; that however much I don’t see eye to eye with others about causes or treatments and so forth, the population of people who talk and think about autism every and all the time is hardly everyone, and that we’re more in this together than it might seem, or than we might wish it to seem. I had an image of what Charlie “should” be, and I wasn’t keeping my eyes focused on the real boy really in front of me. The boy who likes bikes over books, and hanging under the pool water than curled up on the couch with one of those books.
With these thoughts in mind, I wasn’t quite sure what to expect on reading an editorial in the July 2nd Washington Times entitled “The Pentagon and Autism, by Karen Driscoll and Michael O’Hanlon. Far from declaring a “war on autism” or suggesting that autism poses some kind of “threat” to the nation, the article is a thoughtful call (though some of the references to autism are more than puzzling, as noted here) for the Department of Defense to provide adequate (at the least) services and treatments for autistic children with family members in the US Armed Forces; the authors call on the DoD to provide “a model for other insurers and health plans to emulate.”
I’m not sure at all where rhetorical calls to “make war on autism” are getting us, but good teaching and treatment for autistic children are simply necessary.
Again and again in our interview, Jim and I kept returning to themes of isolation—how alone families of autistic children can feel and be—and of the simple importance of other people in Charlie’s life. After family, these have been Charlie’s many therapists and teachers, starting with the five young women who were his first ABA therapists in St. Paul, Minnesota, in 1999. The highly structured teaching suited Charlie’s learning needs and the data we meticulously kept taught me how carefully I needed to observe Charlie, to see the nuances of his growth and understanding. Most of all, having all those therapists spending hours with Charlie created, as Jim likes to say, a rich communal experience that neither the therapists (many of whom we are still in contact with) nor Charlie, nor Jim and I, can forget. It’s why our autism experience has been, through some really tough and bona fide terrible times, full of of witness and of hope, and love.
And, as at that interview Tuesday morning, fun, even when life seems at least a little too trying.
Tags: asd, asperger, autism, autism blog, conversion, disabilities blog, disability, documentary, dorothy day, Family, family blog, interview, jenny mccarthy, movie, Parenting, pdd-nos, recovery, ReligionRelated Stories
POSTED IN: Family, Health, Insurance, Military, Movies, Parenting, Treatment
19 opinions for More Thoughts on Recovery After an Interview
Bonnnie
Jul 2, 2008 at 8:22 am
Great entry! First, I look forward to seeing your interview someday, have you gotten any info on when this documentary will be out and where it will be showing?
I also have to say that I respect you decision on deciding not to focus so much on the “cure” and focus on Charlie. You did it when he was 5 but I have to confess, Casey is 9 and I am still struggling in a way. The Acceptance Movement has proven a wonderful outlet for me and made me more open to my son and his Caseyisms, yet I still sometimes hold out hope that there might be something out there that could help him be a little more focused, or less perseverative. I still get a little envious that my good friend is still seeing a DAN doc that I had seen as well, but given up on because it just cost so much, he was so far away, and it was very difficult to follow his wishes and keep up with the testing. I suppose though that like you, I longer am looking for a cure or trying to fulfill my own needs and hopes for him, but am just trying to help him be the best person with Autism he can be.
To touch on your point about the “War on Autism”, I’d like to say that I find this whole campaign if you will, offensive. I have never heard anyone speak of the “War on Downs Syndrome” or the “War on CP”. Was is Autism depicted as such an enemy. I guess it’s all in how you percieve it, which is just the point of all this I guess!
Rose
Jul 2, 2008 at 9:23 am
Letting go of recovery…if people only knew the freedom it gave them! It’s what my family meant in the beginning when they drove me crazy by saying “there’s nothing wrong with Ben.” I wanted to be a hero, they wanted me to be a parent.
Good post!
Rose
Jul 2, 2008 at 9:26 am
Oh, let me bring this up…this is the singular most important line in the post!
>>>I think at that point I realized that the “autism wars” were inside of me<<<
I was having Ben prayed over at church, when I always had the sneaking suspicion that it was me who needed prayer, not him.
retiredwaif
Jul 2, 2008 at 9:35 am
Bonnie, the struggle to become more focused is common to most autistic adults, and there’s value, I think, to any skills that can be acquired in childhood.
Sometimes what gets lost in the noise of the “acceptance movement” is just how difficult it can be to accept any of our loved ones, autistic, neurotypical or otherwise. Like many women, I’m constantly engaged in an attempt to accept my (bipolar) mother and my (ADHD) husband for who they are, not to mention my (completely neurotypical) daughter as she enters adolescence.
All parents and children eventually come up against the difference between the imagined child and the actual child. This is true even for autistic adults–I am far from the first autistic parent to plan the perfect childhood I would give my autism-spectrum children, the ways that I would make their childhood a refuge, only to be blessed with two incredibly social, sunny, people-loving children!
Marla
Jul 2, 2008 at 9:50 am
I love this post. Very good points, especially about the war being inside of you. I know what you mean. It takes time but acceptance is so wonderful.
Bad mommy
Jul 2, 2008 at 10:03 am
Retiredwaif is expressing something that I feel deeply: accepting your children — all your loved ones — for who they are rather than the role that they play (or that you expected them to play) in your own life is a doosy. It’s also critical.
Letting go of that imagined child to see the one in front of you is the trick regardless of their neurological status or any other trait they may possess or lack.
What is hard for me is how the outside world views my child, not really how I view him. I am not on the spectrum, but I am quite strange in my own ways — I have an easier time dealing with my autistic son than my neurotypical daughter. The worst for me to deal with is the ADHD/Aspergery boy, because he dovetails mercilessly with my weaknesses.
I struggle to look at them and see who they are, all three of them. I think in terms of children, the task is made harder by the amplification and echo of traits through families that are so laden with emotional baggage. Not only do one’s children know where all the buttons are to make their parents go off, they push them making that face that you hated of your father’s, or with those eyes of your grandmothers, or sporting that grin that is so unseemly in your spouse. Life seems sometimes like a giant deja vu joke.
M
Jul 2, 2008 at 11:53 am
I think I’m working on the opposite of a conversion narrative. I’m not sure what the antonym is. An unversion? A narrativeless diversion?
Will work for story arc.
Amanda
Jul 2, 2008 at 11:54 am
It’s very difficult to see people for who they are to begin with, even if you’re not family. It’s way too easy to see only what you want to see, or fear to see, or only what you think is there. It’s very difficult not to.
Leila
Jul 2, 2008 at 12:22 pm
My child is still young (not quite 5) so I’m hoping that he’ll develop full speach and mainstream in school, however I don’t like the word “recovery” because it’s not like getting over a disease. His progress depends mostly on his own brain capabilities and the educational methods we utilize to help him figure things out. He’ll become high functioning or “lose” the diagnosis if it’s meant to be. If his maximum potential is to remain moderately autistic, then our family will have to learn to deal with this reality the best way we can.
Club 166
Jul 2, 2008 at 12:28 pm
The most amazing thing about the article you cited “The Pentagon and Autism” is that this article avoided any war-like allegory. No “war on autism”, “fighting”, or “battles to be won”.
The people who you might expect have military verbage close at hand chose to use non-military language to discuss autism. Even though I don’t agree with everything in the article, I think this one fact is extraordinary.
Joe
Kristina Chew, PhD
Jul 2, 2008 at 12:46 pm
@Club 166, I thought the same!
@M, an unraveling—-unreveling—-non-revelation……
Tara
Jul 2, 2008 at 1:49 pm
@Club 166,
my hypothesis: that’s possibly because those people just might have some real perspective on what the war actually looks like and autism is, after all, something in very different category…
For most people word “war” is really about an idea and at best something that happens to someone else, somewhere far, far away so they have the luxury of using it lightly…
Christine
Jul 2, 2008 at 2:45 pm
Kristina, what a wonderful post. I often think of those first days, well, months. … years, as a real period of liminality. Growing and learning as the parent of a child with autism is really a journey of becoming. At least for me. And it seems for you, too. So thanks for sharing this.
Melody
Jul 2, 2008 at 4:07 pm
It seems like, especially with the biomed, that there’s this message being put to parents: get your autistic kids to do x and y and z, or else you’re failing them by not doing all of our diets and procedures. Really, though, the thing about autistic people is the unusual ways we develop - some people will gain a lot of skills quick, or slow, and there’s all kinds of fluctuations and variations on this. For me, I gained skills in academics and abstract reasoning while consistently losing skills in concrete/rote learning and speech, meanwhile my self-care skills have been slowly improving over my lifetime. And then there are spurts and there are delays, and my stimming will go up and down, and it’s basically taking different paths to get to different places.
Bonnie Sayers
Jul 2, 2008 at 4:23 pm
Looking forward to hearing more about when and where for the interview. My Dad worked for many years with the Port Authority of NY and NJ as an air compressor mechanic, they were one of his clients. Should be an interesting book Jim is writing.
I just read a very sad story on a boy who also has cancer and his Mother did not follow thru on that treatment and he is dying.
http://www.boston.com/news/local/breaking_news/2008/07/saugus_man_call.html
Bonnie Sayers
Jul 2, 2008 at 4:25 pm
I was just checking out
http://disability.alltop.com/
a friend writes deaf mom
and I spotted autism vox on there.
Laura
Jul 2, 2008 at 4:46 pm
Not to be a broken record, but great post.
Bonnie,
I heard about the story you linked to on my local newscast. The video footage of the dad with the son was so touching, but listening to the narrative was like getting punched in the stomach. That poor boy.
Kristina Chew, PhD
Jul 2, 2008 at 9:41 pm
That is sad and awful—-reading about the back and forth between the parents and everything…..
The movie is Loving Lampposts. The filmmaker is Todd Drezner who has a young son with autism and he’s done lots of interviews; I saw clips of Kassiane Sibley, Phil Schwarz (of AANE)….and Jenny McCarthy (at a certain conference in Atlanta).
Yes, a journey of becoming and still so much to learn.
MikeO'Neill
Jul 2, 2008 at 11:50 pm
Thanks Kristina. while I still have hope that Thadd will recover to at least be at an aspbergers level, I saw him at lunch today and listened with my eyes and saw that its possible I may never get more than I have of him now. I will keep trying though I realize I must be ready to accept that. We parents are in this together, even if we choose different paths of treatment/recovery/non recovery.
Thadd’s ABA is 450$ a week. speech is paid by the shriners except $ 80 a month. The w holistic pediatric is $900 (average) every 2 months. GFCFSF 50% organic diet is not cheap! Family is helping out as the above is more than my salary. Recently fl passed legislation to force insurers to provide aba. Problem is…hehehe.. they dont include the specialists on the plan. So he can go to a regular phd for a visit @ 45$ hr co pay or the same specialist for 55$ hr out of pocket. Thanks FL legislature.
I have a disdain for american “commercialism” and war. Hard to believe the pentagon can be a role model for anything. I would however like to see more assistance for familys with special needs kids.
–Peace
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