Taking the Scenic Route

Today’s Oprah was about Autism, and I know I will be asked what I thought of it, so I thought a blog would be appropriate.

First, I am not a huge fan of “Autism Speaks”, but I am happy there is more awareness out there.  One of my initial impressions is that I was suprised how much more I liked the parents on Oprah’s show than I did when I saw them in the Autism Speaks video “Autism Every Day”.  In that video they just seem so foreign to me, and I remember the film scaring the crap out of me and really bringing me fear for what the future holds for me.  I also really disliked the view that the children were ‘trapped’ and ’stolen’ and the philosophical view of autism as a horrific, devastating thing.  It frustrated me.

As the show progressed, hearing the parents talk confirmed to me that the video was edited in a specific way to elicit the most negative view of autism.  There were bits and pieces of the film I identified with, but most of it, especially the attitude of the parents, was alien to me.  The parents seem much more well rounded and more loving when they were on the show, which softened my initial view of them quite a bit.  Although there still was some degree of hand-wringing dramatics, I found it considerably better than I thought it might be.

One thing I realized, more concretely, it that there is one definite line in the sand that makes our experience different from some, but not all, of the parents on the show.  I think it probably would be much more devastating and harder to deal with if your child was typically developing and then seemed to just grow a shell around them.  For us, there was never a regression.  The closest thing to a regression was that he got harder to photograph someplace between 6-12 months, but it could also be because he was mobile and not as captive of an audience.  Our experience was just atypical development, not a sudden shift in development.  We never had a ‘loss’ in the way that one set of parents described. 

One thing I found sort of darkly funny is one of the parents commenting that the screening questions are just not nearly precise enough to catch autism, especially if the pediatrician/doctor isn’t familiar with autism and can’t see the subtle signs in behavior that would trigger them to ask more accurate questions.  Many of the questions would catch a hearing deficit, but not an attention one.  The questions need to be revised considerably to catch issues earlier. 

Something about the doctor on the show just rubbed me the wrong way.  She really seemed to tow the line of the CDC without at least acknowledging that nobody really knows much about the causes.  It made me really appreciate the developmental ped we have.  I was really glad that Oprah gave a voice to the mom who adamtely believes it was vaccines that caused the autism in her child.  There are enough parents who have that experience that it would have been a shame to have that voice silenced.  Even though I don’t think Zane was triggered by an environmental impact, I do think that kids with the regressive forms of autism (typical development and then *wham* autism) are probably caused by environmental triggers and I tend to think the most likely suspect is an assault to the immune system, either by vaccine (not neccessarily mercury, but vaccine’s in general) or virus or the antibiotics or other medicines used to treat illness.  I am convinced enough that the insane number of vaxes given to our tiniest humans is a bad idea that I delayed many of Zane’s vaxes once I realized it was an option (and it really, really pisses me off that doctors make it sound like it isn’t an option…feels like a betrayal and made it really hard to start trusting doctors again), and I delay all of Zora’s vaxes.  We *might* start vaxing her this summer, but most of her vaxes will be spread out over years, instead of months, and most will be started after at least 2 years old. 

Of course, there is a large part of the experience of those parents that I don’t have.  My child is probably not considered ‘high functioning’ right now because of his language usage, but I strongly believe he is headed that way.  He doesn’t have the extreme stims, he doesn’t totally lack communication, and he seems to have a high intelligence that will compensate for a lot of the other things given some time.  He has motor planning problems, but his extreme ability at problems solving compensates for it to a large degree.  He is able to generalize concepts with much greater ease than most kids with autism.  He is also able to make leaps in abstract thinking that are atypical in autism.   He is gaining so quickly it is really likely that he will be able to be ‘mainstreamed’ at some point in the future. 

I might come back and add to this, but Zora is not happy and daddy doesn’t have what she is wanting.  lol.

ok…now where was I….

One of the other things that sort of bugged me is the idea that parents of autistic kids are some how ‘more courageous’.  I don’t know, I don’t really feel that.  I just feel like a parent. 

I wish she would have had some autistic adults on there.  Even though I am the parent of a specturm kid, I get a little tired of hearing just that perspective.  Autistic individuals should be given more of a voice.  There should be a show that talks more about acceptance, and that it isn’t a tragedy, it is just a difference.  Yes, it is exhausting to be the parent of an ASD kid, but I think it is more exhausting to be trying to navigate in a world that is so unfriendly to the way you think and feel.  I wish they would have explained the concept of “spectrum” a little better because I don’t see my child in many of the kids they showed and think that many people who are looking at their own children might continue to miss the symptoms if they only show the more extreme cases.   I wish there would be a show that talked more about the benefits and gifts that come along with the struggles.  I wish there was a show that talked more about not being judgemental. 

I did like how they ended the show.  I loved the “Why don’t you just…” section and really identified with that.  (remember my Knuffle Bunny post and follow up…very similar experiences).  I liked hearing how the parents learned from the child.  I liked that because I could really understand that and, for once, shared the experience more completely with those parents.

I am really glad she did a show on Autism.  I wish it wouldn’t have taken so long.