My wife and I and my outlaws (they’re great, but this is still my handle for them – my only ‘in-laws’ joke) took the Bear to Black Creek Pioneer Village on Sunday for an outing. We all had a good time, and the Bear, true to form, wandered everywhere to see everything, but didn’t seem to be focusing much on anything in particular. We stopped in a yard outside one of the houses and hung out under the shade of the trees, and the outlaws played with the Bear.
“She might not look like she’s paying attention, but she’s taking everything in.” said my father-in-law. “She understands a lot more than we know.” My jaw dropped. Then I clued in, and that reminded me to mention to my mother-in-law that we now had a copy of the Time magazine with the cover story on Autism (May 15th, 2006 issue, written by Claudia Wallis). “Oh, we forgot to bring it”, she said, but it didn’t matter. We had all missed that edition on the newstand. Relatives in Michigan had a copy and sent it to my outlaws for them and then us to read. “Did you read it?” I asked. Both answered yes and that they had found it very interesting, and helpful in understanding autism. They’ve always been good with the Bear, but their comments on Sunday showed that they ‘got it’, at least as much as one could from the Time write-up. They knew that what they could see was not indicative of what the Bear was thinking or understanding or capable of. It was one thing for us to say it, but now it was in print too, so it must be true.
The outlaws then proved that they didn’t ‘get’ everything when they asked about the Bear’s school. They forgot that she goes to IBI five mornings a week, and were still under the impression that the government must be paying for her IBI since the government had ‘approved’ her for funding. We obviously must be doing something wrong (because there surely couldn’t be a waiting list for something so important?). Why didn’t we just demand that they pay? But that’s another story.
I found the Time write-up to be surprisingly good. Among other points, it talked about previously unrecognized (by non-ASD people) capabilities of those with ASD, autistic brain structure (raising the surprisingly sophisticated question of how much is the cause vs. the result of autism), autism subtypes, the view that ASD may be a combination of genetic vulnerabilities and environmental triggers, and the potential of the immune system to play a role. It also included an article on ABA and Floortime/DIR (developmental, individual-difference, relationship based) teaching, showing that teaching is not just possible, but very achievable. The write-up also mentioned some of the negatives, but did not dwell on them to the exclusion of the positives or of progress and hope. It was surprisingly balanced in its overall approach.
My favorite part was the following bullet-point under “Among the surprises:”
”Many classic symptoms of autism – spinning, head banging, endlessly repeating phrases – appear to be coping mechanisms rather than hard-wired behavior. Other classic symptoms – a lack of emotion, an inability to love – can now largely be dismissed as artifacts of impaired communication. The same may be true of the supposedly high incidence of mental retardation.”
This one quote highlights the most important take-away from the Time articles that I want everyone who meets the Bear to know. If they remember nothing else, I want them to remember this. For this alone I am grateful to Time and the author.
Contrast this with “Autism Every Day”.
I was quite taken aback by the video itself. I feel sympathy for the families involved, but I also have some major issues. To me this was a ‘train wreck’ video, and while autism is obviously difficult, I don’t feel that families touched by autism are well served by disaster movies. A more honest video would have showed the difficulties, but also the good times, and that it is possible to cope, learn, and improve the quality of life of our children, and for that matter for ourselves as parents, siblings, etc. The video asked for understanding, but it appeared to me to be understanding for the parents in having to deal with their children, rather than understanding for both children and parents.
I quite like the idea of a video to explain our lives to others. But I'd prefer that it didn't make my child (by association) look like a ‘nightmare’ inflicted on us (and potentially on others when they come in contact with her). As a parent, autism is hard and painful at times to deal with, but there is also a joy that we can feel from our children, and one that our children can feel, even if we cannot always see it - and I think that much of the time I can see it, written on my daughter’s face. I don't want people to shy away from the Bear, to be afraid of the disruption that they fear she may cause, or to pity her, but rather, I want them to understand her and accept her.
Asking for acceptance does not mean that I'm not going to work like hell to fix her SI, immune, GI, etc. issues. I have no problem with autistic thought per se, but with autistic 'issues' - it is these that I'm working to help her overcome, and I believe there is a link between her medical symptoms and these ‘issues’. Asking for acceptance also does not mean that I won’t try through IBI or other teaching methods to teach or enable her to learn the skills she needs to make her way in the world. Instead, acceptance means recognizing her as a human being worthy of the same respect and rights as anyone else. Implying that she is a nightmare to deal with is not only untrue, but does nothing to further this goal.
I'm also angry at some of the comments of the parents. I believe that my daughter is capable of understanding far more than I can see (and I often get confirmation of this, at the most surprising times). I would never say in front of my child (or behind her back, for that matter) that I was contemplating driving off a bridge with her in the car, or that she will never get married, or that hopefully medical science will find a cure before her sister has children, the implication being so that the sister does not have to deal with a child like her. What about medical science ameliorating her autistic daughter's difficulties, or enabling her to lead a rich life through learning and inclusion too? More than one of the parents sounded like they viewed their kids as 'write-offs', and did so right in front of them. That made me cringe.
A major point left out of both the Time write-up and the video is that learning and assistance for parents is definitely needed and in short supply. This is needed so that parents can better understand autism (not that I do yet, either), how to help their children, and what their children are - and can become capable of - achieving. The lack of understanding of the powers that be (especially including front line and even some 'expert' medical people, but also government and some in the various support services) is short-changing everyone involved. Both missed this point.
The words and actions of the parents may be related in part to this lack of knowledge. Given that my daughter is not yet three, I'm also very conscious of 'there but for the grace of God go I', so I don't want to judge too harshly, or publicly condemn them (although I guess I just did). My daughter is 'severe' (or was last summer), but I have no idea what she will be like when she is five, 10, 15, 20, etc. I think she is becoming significantly more capable and will surprise us all. But even if she doesn't lose the 'severe' diagnosis, I hope that I will never look at her as I perceived that the parents in the video looked at their children. To me, that would be a tragedy.
Overall, the Time article is one that I wish that everyone coming in contact with the Bear could read. I hope that it helps them gain a better understanding of what autism is, accept the Bear’s strengths and challenges for what they are, and see her as filled with potential.
In contrast, I hope that no one who meets the Bear has seen ‘Autism Every Day’. I hope that any who have can recognize that the video is not a true reflection of life with the Bear, and I definitely do not want them to judge her based on what they’ve seen. Getting people to understand and accept the Bear will be hard enough, without her having to deal with the ‘own-goal’ called Autism Every Day. The Bear is not a nightmare to be endured. She is my daughter, she is a great kid, recognized as such by all who meet her, and she deserves better than the video. The Time article is a good place to start.
On a bright note, the Bear ate with her hands for the first time today. Previously, all food came from a spoon or a sippy-cup. We recently got her to allow us to put banana from our hands into her mouth. But today, for the first time, she ate strawberries with her own hands. Small steps, but a big leap in independence. Go Bear!