Don’t Ruin it For Me

August 8, 2006 at 1:55 pm (Autieparenting, Autism on film, Commenting on NT comments, Therapists)

A few days ago I stumbled upon a video called The Face of Autism. I wasn’t sure what to expect, because I have read titles like this before, and I never ended up liking the message. Either that, or I never liked the way the media has used such titles to create some kind of cardboard template of what all autistic people are supposed to be like and think like. The last time I saw the words “The Face of Autism,” I believe it was on the inside cover of the May 2005 issue of Discover Magazine. It was a blurb, inserted by the editors, in reference to the article What Do Animals Think?, an interview with Temple Grandin by Verlyn Klinkenborg. I remember actually hating the subtitle or tagline that came right before the story proper:

“Temple Grandin says animals think like autistic humans. She should know.”

Even though the blurb “The Face of Autism” was an editorial insertion and not Temple Grandin’s own declaration about herself, I still felt like she must have have given some tacit approval or at least some kind of signal to the author that it was okay to use this kind of language. I could be wrong, though. My own father was misquoted at least once in his 1989 interview with People Magazine, so I really should know better than to blame the celebrity. But still. 

I remember feeling very cynical after reading this article, but not because I don’t respect Temple Grandin (although I do believe that if you truly love and understand a creature as much as you say you do, you shouldn’t make it your occupation to find new and better ways to kill it). I didn’t like it because I felt that there is no “face of autism.” The “face” that was interviewed is a very unique autistic individual who does not speak for me or for my kids and whose total package doesn’t resemble any of us. Of course there are some things about her that could be universal to autistic people. There are some things about autistic people that are universal to all people. So in my view, it doesn’t make sense to elevate any one person and call them the “face” of any group of people.

I guess it is precisely for all these reasons that I found the video so delightful. It was almost like this kid was thumbing his nose–probably without even knowing it!–at what everyone probably expected to find when they clicked on a video titled in this way. Maybe they were looking for an image of something tragic, or weird, or heroic, or angelic? Instead, what they got was an image of something human, and normal, and loving, and happy. Instead, what they got was the message that the face of autism is…you. That’s right, you. Here is are the captions that this boy wrote:

This is Jorie

Jorie is autistic

She is just like you and me

Jorie is my little sister

But she’s the same as your little sister

Or your daughter

I love you Jorie

We all do

His idea is so simple, but apparently it is so profound that millions of people reading, writing, and talking about autism still do not get it. Autistic people are human beings who, if allowed to, have lives worth living, loves worth having, joys worth sharing, families who love them, desires, and aspirations just like everybody else. If allowed to be, they could be just like everyone else instead of objects of voyeuristic curiosity, scrutiny, pity, fear, and/or loathing.

I admit to the world that I bawled my eyes out the first time I watched this video, and the next six or seven times I watched it I cried some more, but not quite as much. Even later on that day, as I was going about my business of folding laundry or whatever I was doing, every time I played back the Coldplay lyrics in my head, I would start tearing up again. I know I will never be able to hear that song in the future without thinking about Jorie and her brother.

As I usually do when I get very enthusiastic about something, the next thing I did was to post the video to my group and to a few blogs. I wanted everyone to see this video, because we were all pretty much still reeling from the hurtful video called Autism Every Day. I felt it was “time for something completely different,” and so it was. Finding this video seemed really nice after just having written The Opposite of Love. It was time for the opposite of fear, and I was ready for it. So were some people on my group. Trudy was calling for “great big propaganda campaign” to promote visual images of autism along the same lines as this video, and Anne was getting her groove on:

After seeing these videos and reading [The Opposite of Love], I’m committed to getting into a more positive groove instead of reacting to other people’s views all the time. You can’t really argue people out of fear or hatred.

Some members of the online autism community were starting to send posts to Jorie’s brother (who goes by the name Chaseboxers), thanking him for making such a great video and telling him how lucky Jorie is to have such a loving brother. I felt like maybe there was a new vibe starting to emerge, and I really, really liked it. I found two more videos, one of Jared and one of Kevin Leitch’s daughter, and I created a collection of autism-positive videos, for what purpose yet I have no idea. But I was feeling good, and that feeling was not allowed to last. That’s because I got sucked back into the negativity of a troll who posted on the You Tube site as follows:

Paul wrote:

That was beautiful. I hope she is getting early intervention therapy so that she may have a better quality of life. I am a therapist for children with autism (among other things) and I can’t stress enough one thing: consistency. Watch “The Miracle Worker” or “The Elephant Man.” You’ll see what I mean.

Autiemom replied:

Hi Paul,

Your comment was tasteless. Can’t a brother tell everyone he loves his autistic sister without some therapist coming along and talking about the urgent need for therapy? Come on!!

Paul fired back:

“Tasteless?” How? I have been working with special needs children since 1991 and have seen way too many cases of no early intervention at home and it is sad. And although my focus wasn’t intended to sound “urgent,” early intervention IS an urgent matter..but that’s only if you CARE. I never devalued her brothers statement of love (nor did I assume she wasn’t getting any) I said “I HOPE she is…”

And again he wrote in a separate post:

I also want to point out that I’ve seen many parents feel bad for their child and let consistency slip every now and then…bad idea. There’s a reason I’m a lead therapist who won instructional aide of the year TWO YEARS IN A ROW. I don’t treat these children any differently than I would a neuro-typical. In fact, I demand more…and it works. Just like her brother says: she’s no different.

Autiemom concluded:

Paul, If you cannot see how your original post was inappropriate *in this venue* than it is you who needs social skills training. Your subsequent two posts would take several pages to deconstruct. Again, this is not the appropriate venue to do that.

I would like to say that this particular exchange sparked my idea for this essay, but it did not. I have been thinking for several weeks now about something that has made me so sad that I have not even been able to put words to it. The only reason I’m grateful to Paul is that his posts served to squeeze out the puss that has been building up under the surface of my thoughts about therapists and what they can do to families. In much the same way that Paul intruded upon the thoughts and feelings that were being expressed on the comments page, the organic flow of ideas that sprung from a very unselfconscious act of love of one brother toward one sister, I have found that therapeutic ideas and actions regularly intrude upon my everyday life as I am interacting with my children, and what that does is kill the spontaneity and the joy or at least lessen it.

I finally was able to put words to this thought as I was sitting on the floor with Ben the other day. He was lying on his back looking up at me, knees bent into his chest and feet on my chest. We were talking and playing, and I was kind of rocking forward and letting his knees push firmly on his chest. This made him smile, just like it used to make David smile.

Deep pressure.

We were rolling around on the floor and playing some more

Floor time

and more words started popping

Reciprocity

into my mind

Referencing

and it made it hard for me to truly enjoy this game we were playing on the floor because I felt like I was betraying him. He was trusting me and was fully in the moment with me, whereas I was turning our private nonsense play into a teachable moment. Inwardly I felt something had gone terribly wrong, somewhere down the line. Had I just been paying too much attention to everything Ben’s therapists were saying to me? Had I been too good of a student?

Several months ago, Ben and I made up a game called “Dee dee dee dee.” The way you play this game is you tap on my butt and get me to turn around. Then you hold out your hands, and I grab your hands and run around in circles with you, saying “Dee, dee, dee, dee” in a squeaky voice. Then I pull you down with me onto the floor. We laugh and roll around, and then we get up and do it again, only going in the other direction. This was our special game, and nobody else knew about it because they didn’t need to. One day after an OT session the therapist told me how great Ben was at “referencing” and how she wanted to graduate him to some more “relationship building exercises” in accordance with the theories of Dr. Guttstien. That’s when I told her about our little game, and that’s when she loudly congratulated me for really “getting it” and doing things innately with him that are helping him, therapeutically, to build his relationship skills. The game was never the same after that, for obvious reasons.

To read this, paired with Paul’s posts to me on the issue, it might seem that I am against any kind of autism therapy and think all therapists are evil. In fact both of my autistic sons have received OT and ST, and my older autistic son David also received PT for a time. Paul completely missed my actual objection—you don’t tell a kid that you hope his baby sister is getting early intervention as a commentary to a video whose sole purpose was to convey love for her–and made it into something that it was not: criticism of him personally. He went on to say that providing (his definition of) early intervention means you “care” and not providing (or not providing evidence that you are providing) early intervention means you don’t care. The consequences of such uncaring, inconsistent parenting are sad, he says. Did he forget that he was not writing his original comment to a parent, but to a brother? Why should he suck a kid into this political game? Was he trying to get the brother to demand–to use a word that Paul used to my utter disgust–from his parents what exactly they are doing to help Jorie?

Here is what is really sad. I’m 38 years old, and about one month ago I had a miscarriage. I don’t know if I can get pregnant again, and I don’t even know if I will bother trying to. Sad as that event was, that’s not even the sad part I’m talking about here. The sad part is that I don’t have too many more years of being able to spin around the room squeaking “Dee dee dee dee” with Ben before he will start saying to me, like David does sometimes, “Just go away and leave me alone.” How much longer will I really be able to roll around on the floor and blow fart noises into Ben’s belly before he gets tired of it and just wants to go play video games? Not much longer. It really is true that kids grow up too fast. My 14-year-old son is going into high school in the fall. He just told me that during weight training at the high school gym this afternoon, he was debriefed by some sophomores on all the sex and drugs that he is going to be exposed to very soon. David, my autistic 12 year old, spends his time perfecting his bowling technique, discovering his nether regions in private, and beating his favorite video game over and over again. I can still kiss him and tuck him in, but I’ve noticed this summer that he’s suddenly almost as tall as I am, and he started asking me about marriage again, and why he can’t tongue kiss me and marry me. I told him he will just have to wait for the right girl.

The only baby I have left now is Ben, and with all the OT and ST he’s getting these days, I’m finding it harder to just be totally spontaneous with him in these precious few years we have together before he starts growing hair in different places and talking about girls. It hurts me when these “therapy thoughts” intrude upon our time together. But I can’t blame the therapists. I can only blame myself for taking them too seriously. Their ideas seem to move in and out of my house like ghosts, whispering suggestions to me of things I could say to my kids that might be more “relationship building.” All this does is drive a wedge between us, I’m afraid, and make our time together less sincere. Someone told me that when he was a child, he used to feel this kind of falseness in his parents. I’m sure my kids can, too.

Sadly, Paul has ruined The Face of Autism video for me. Now, when I look at it and read the comments, I don’t only see Jorie and I don’t only see that it is about her and her brother, about you and me, about humanity in general. Paul’s “face” intrudes upon those ideas that had originally seemed so fresh and innocent, and I keep wondering why he had to make it all about him, and how much he “cares,” and how much people like me don’t really care. Only I do care. A lot. Enough to try to reclaim these last few years with my little autistic son, before he gets too old to play, and enough to bust the ghosts that want to rob them from me.

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5 Comments

  1. Alexander's Daddy said,

    Autiemom, I joined you in the disgust over Mr. Fisk’s comments as I posted right after you under the name of Christschool, my alma mater. I liked Kevin’s video too. I posted one of Alexander a few weeks ago. You can find it here: http://www.youtube.com/watch?v=cNMKlr2s_q8

  2. n. said,

    I want your videolist to share with the folks at AFF for AutTV and also to show my students. Thanks.

    you know what made me cry? a parent who is not just waiting and waiting for the autistic kids to grow up, but feels sorry there is not more time.

  3. lisajeancollins said,

    Alexander’s Daddy,

    Thanks. I uploaded that clip to Autieparents, and I also sent you an invite to that group in case you’d like to join. I have at least 20 clips I have found so far that I like.

    N,

    Hi and thanks for posting a comment. The easiest way to find clips all in one place would be to join Autieparents and then go over to the links section and click on the file folder I’ve created for this growing collection.

    The horrible thing is that as I was flipping through the hundreds of clips on autism, I found some ones that were so mean and humiliating toward autistics, and the comments to those were even worse. I should collect the worst ones as examples of the kinds of things that some NTs think are funny.

    About the last thing you wrote, I’ve been thinking about that all afternoon. Thanks for writing that. I’m sure I’m not the only mom who feels this way either. That’s what’s so great about blogging and putting home movies on You Tube. All kinds of voiceless people are getting to say how they really feel instead of having other groups like Autism Speaks speak for them.

  4. Jemal said,

    I really understand what you mean about therapy encroaching on playtime. Back when Jared was 3 and 4 I got so sick of trying to make all of our play therapeutic (like the experts told me) that I made the decision that we’d have two kinds of play: learning play where I wanted to educate Jared and plain old play time where the only point was fun.

    And you know what? I think that plain old play has been far more rewarding and far more therapeutic for Jared. Jared used to have the hardest time engaging with other people. But after far too many hours of rolling around squealing, “Kiss to start tickling! Kiss to stop tickling!” Jared has fully grasped the concept of fun.

    Jared WANTS to talk to people because instead of spending our time counting the sides of heptagons or whatever, we play games and now he knows games he can play with people.

    And of course there’s nothing wrong with using fun time for learning – but as parents of autistics, we get so much pressure to teach and train and educate and work and work and work that we forget what children and parents are for: to enjoy one another’s company. If you’re not going to have fun with your kids, why did you have them? (Oh, and thanks for the link and the comments!)

  5. lisajeancollins said,

    Hi Jemal,

    Thanks for your comment. I agree with everything you said!

    I should/could have titled this essay “Why I Don’t Want To Be My Child’s Therapist,” but that would have just given it away, now wouldn’t it? 😉

    The thing is therapists expect–some demand–that the parent “carry over” (I can’t tell you how many times I’ve heard that phrase used) whatever therapy they are doing in the “home environment.” What if I just don’t want to? Does that make me a bad parent? Does that mean I don’t care?

    Could it be that when I cross over from parent to “therapist” that I could be doing more harm than good? All I know is that whenever I’ve put on my therapy hat I’ve ended up very shrill and ineffective, and if I would have seen film footage of myself as therapist, I would have fired myself on the spot.

    I’ve been complaining for a while that I want people working with my kids to be better, more professional, more patient, more [whatever] than I am because that’s what they have chosen to do for a living. I wanted to have children; I never wanted to be their therapist. I want to have the right to a “separation of parent and therapist” in my house without being accused of not caring or not being consistent.

    But I do think autistic children learn more incidentally than they are given credit for, and I give my kids lots and lots of time to explore their environment without being in their face all day long. I give them as much space as I need, and it seems to work for us. Maybe I’m not giving them enough in some peoples’ book, but I tend to think that things will fall into place at their own time. It’s not like I’m just sitting around “doing nothing” (something we are often accused of). I take them to whatever therapy appears to be appropriate, I try to be as involved as I can with the schools, and the rest I just sorta let go. I find that the more I press my kids, the more they withdraw but when I leave them alone, they seek me out and want to be with me. They are more joyful that way, instead of interacting with me grudgingly. I would be the same way.

    Need I say that I spent a LOT of time alone in my room as a child. Those were good times 🙂

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