Yes, I watched it. I was rolling my eyes within minutes, but I watched the whole thing.
There were good things about it. I appreciated what she said about babysitting being such a good help, and how people around you don’t know how to react (they don’t rally around like they do with other diagnosis, largely because nobody understands what it is). I could identify with how hard it is in the beginning, how overwhelming, and how different the journey is than the one you thought you were getting into. Also good: that we should take another look at the vaccine schedule, and that one size doesn’t fit all. I also agreed that doctors need to listen to mothers more, rather than dismissing our instincts. We are the experts on our children. No amount of med school can change that.
I was not thrilled with several aspects. First, it’s Jenny McCarthy. She isn’t exactly the most credible “autism expert” out there. How much do I really want to listen to somebody so dumb they cut their hair in a style that has to be pushed out of their face twice a sentence. (made my face itch watching her). Second, she offered very little by way of evidence. There was only a short video of “after”, with no “before”. You just have to take her word for it that he is “healed”, even though he still has traits that come up now and again, so they have to keep squashing that down. ( a cringe worthy statement ).
The main problem I had was the big picture. I find it increasingly difficult to listen the the culture of “cure”. I find it distasteful when she describes her son as “trapped” and putting herself in the role of martyr heroine that is going to “free him, brick by brick”. It seemed really self-serving. It also furthers the culture of “cure at all costs” and leaves people venerable to feeling guilty if they don’t have the same “success” and accusations of not doing enough. It sets up a culture that makes people start blaming the parents if their child is not transformed to typical. There is a big disparity in outcomes of seemingly similar kids, that is independent of treatments. Some kids respond well, some don’t. Since the only real treatment available tends to be more successful the younger you start, there are a lot of kids out there with “autism” labels much younger so they can access treatment. Some of these kids will end up with a higher functioning level just because that is their development curve and because the labels were attached much younger than they would have been even 10 years ago.
I think seeing people who have practically limitless resources spouting such a guilt inducing treatment plan is almost cruel. Most of us can’t afford the level of treatments her son had, and yet we are held to the same standard, or worse, accused of being selfish or that we never should have had kids because “we can’t afford them”. Who the heck expects to spend $70K/year in therapy (conservative estimate…we are at about that much a year with only about 3 hrs a week…but much of it is paid by financial aid) in addition to the normal cost of raising a child. Who expects to spend several thousand a month so they can follow the diet, and take the supplements. That is more than double of what we make in a year.
I wasn’t sure how to respond to Holly’s statement on changing the vernacular from “autistic person” to “person with autism”. It makes me really uncomfortable to say “person with autism” when many of the people actually affected by this difference prefer to be called “autistics”. I still struggle figuring out how to handle the semantics of how to talk about this, which is sort of ironic in and of itself.
I guess, all in all, I don’t understand what people are trying to “recover” from. It would be like asking me to “recover” from blue eyes, or a preference for Birkis, or being a natural night owl. All of these are inborn, or stem from the personality I was born with. They aren’t separate from me. You can put me in high heels, but it isn’t going to make me comfortable wearing them, but I can do it if I have to if that is what it takes to gain your approval. Hmmm….maybe I can recover from “birki-ness”.
***edited to add one more thought***
What really dissapoints me the most is that we keep seeing only the extremes of autism in the media. I guess it is to be expected simply because it is a more interesting story, but it isn’t the reality of most families affected. Most of us deal with someplace in between. I would like to hear more about the austistic spectrum. About the variences. I know when I saw Autism Every Day, it did not help. One one level, it totally freaked me out, and on another, It created a plausible deniablity because I didn’t relate to a lot of it. Zane’s issues are not that extreme. If anything, it further delayed my acceptance, and his diagnosis, because it gave me a reason to doubt what I was hearing. Compared to those kids, Zane just seemed quirky. On the other end, he doesn’t really look like the “recovered” kids either. The majority of cases are in the middle someplace, and even if you have extreme moments (which we do), most of life is not like that. There is a normalcy to it. Why do they not show that? I think it would go a lot further to help with awareness and acceptance if people realized that it isn’t scary. I know I am a thousand percent more comfortable with the more severe end of the spectrum now that I am used to the middle of it. I suspect that I am not alone in that. If you can find a way to relate, it only expands your ability to relate to more. ***end of edit***
On a similar note (and part of why it took me a while to respond)…
We had our appointment with the Developmental Pediatrician on Friday. She is the only one in the State of Kansas, except for KC area, which is served by the Children’s Hospital in MO. We talked to her about the gluten/casein diet. Zane had been tested for food allergies and Celiacs and some other things along those lines (all of which showed he didn’t have those issues) and that, combined with the cost, combined with the fact he would need to be under strict medical care because he is already on the skinny side, left us struggling with whether or not we should attempt the diet. We really, really can’t afford it. My instincts aren’t screaming at me that we need this and it would devastate our finances. But, we needed to at least explore the option. She said that she had several patients who had done it, with no ill effect. However, none of the gains were miraculous, and there is no way to know if the gains would have been made without the diet. We had seen some of the exact same type of gains over the last year and did not have the diet. Some gains are just due to maturity, and they look like miracles to us in the thick of it (I didn’t think he would EVER sleep more than 3-4 hours straight…that, in and of it self probably has made the biggest impact on our lives). Basically, we left feeling like it wasn’t worth us wracking ourselves with guilt.
There was also a looooong discussion about homeschooling. Unlike regular peds, whom I think have no business nosing around in our parenting, a developmental ped needs all aspects of her patient’s lives to really get a good feel on what is going on with them. (especially when they aren’t able to speak for themselves). So, I expected to be questioned on this issue, and I was not disappointed. In the end, she agreed with us. Zane is a really unusual case, and the mixture of his autistic traits mixed with the high intelligence (he tested much higher than others were expecting him to), there isn’t a great placement for him…there would only be ‘the best we can do’. Because of the resources dh and I have, we create a better placement for him at home than the public school can right now. This was a very, very big deal. In the state of Kansas, attendance isn’t compulsory until 7 years old, UNLESS there is a handicap. That is part of why I wanted to stop the IEP before an official recommendation was made, because if we said no, there was always a possibility, however slight, that when we said no, they could come after us for educational neglect. It wasn’t likely, but it was possible.
And finally, some readings that have sat here, waiting for another “autism entry”. lol.
Autism’s parent trap: When false hope can be fatal
Why I dislike “person first” language
Toward a Behavior of Reciprocity a journal article on how the behaviors of the people interacting with the autistic person makes a big difference in how well the autistic person is able to communicate.
