I'll be honest. I do massive amounts of reading about autism spectrum disorders and when it comes time to read for pleasure I would rather avoid, Lisa Genova's "Love Anthony" or Jodi Picoult's "House Rules" (I generally avoid Jodi Picoult anyway. (Is it just me? Sometimes, I think she writes specifically to offend me.) I tend to gravitate towards authors like Chuck Palahniuk and Douglas Coupland. I won't lie, I also have a stack of Sookie Stackhouse books in my closet. Anyway, you can see my taste runs a little differently than some moms in my demographic. So, with SO MANY well meaning people asking me to read Kristine Barnett's, "The Spark" and "Chicken Soup for Raising Kids on the Spectrum", I figured I had better give them a go.
I started with "Chicken Soup" because it seemed less daunting than reading about one more autistic savant. I am very wary of popular culture and the media falsely portraying autism as feel good stories about high functioning kids with talents abound and I know "The Spark" is about nurturing genius so I thought I had better hold off for now. I figured it might piss me off. However, I won't comment anymore on the book because I have yet to read a word of it.
I am frustrated that our culture depicts children with autism as little professors or savants. If I had a child on the severe end of the spectrum I would be incensed at this irresponsible message. Hell, I work with children on the severe end of the spectrum and I am incensed. Every time I turn on the television there is some feel good story about overcoming the symptoms of autism or an inspirational story about some child prodigy on the spectrum. Some of them bring me to tears because like you, my heart swells with hope. I am no stranger to 'inspiration porn' and enjoy many of these stories for the what they are: 'one family's experience'. The danger comes when you hear your friends and neighbors say, "I saw this video about an autistic child that couldn't talk and then his parents stopped feeding him milk/soy/wheat/sugar/dyes etc and he became a math genius. (I feel I can make that snarky reference because I have Kate on a GF/CF diet, but I do not expect it to cure her, only provide her with more comfort in her belly etc.)
The internet is flooded with blogs like mine that use 'feel good' moments, and 'glimpses of normal' from our children to draw readers in and spread awareness. I am guilty of this too. We spread awareness all right, but at what price? Please feel free to snap me back to reality when I get caught up in the 'inspiration' of it all. The more I think about this, the more I realize that we are painting a false picture of the realities some parents are facing and this is not only irresponsible but dangerous. I have written about this in the past here. The politicians will stop paying attention to us. The policy makers will believe we are OK and forget about us believing we are busy learning to connect with the little intellectuals we are raising.
I won't spend much time talking about the book. I will say I was pleasantly surprised that a fair chunk of the book was dedicated to kiddos with severe or classic autism. After reading the first third of the book I thought, Oh no, this is going to paint autism as this pretty picture of quirky aspie kids. I am NOT saying that being on the high-functioning side of the spectrum is easy. In fact, these are the kids that are mercilessly bullied because their disability is mostly invisible. I have written a post about this that sits in the archives of this blog and I hesitate to hit publish for many reasons. One of which is, I do not wish to further divide people within the community but I do wish people to know that children who are so-called high-functioning are in trouble. Big trouble; unless we stop pretending they are all geniuses in wait. So, you see, this message of 'greatness' and 'hidden talents' is damaging for all our kiddos. Let's try and get this right.
I don't know if Kate will someday blend in with her peers and "pass" as they say, but I know I sure as hell won't write a feel good story about it. You might as well take some of the parents in our community and say, "see, my child was all wrong but then with therapy and love and God or (some such shit) we had a miracle and she became 'normal' or we 'tapped into' her genus; it was there all along. This can happen for you too!" The reality is, this can't happen for every child on the spectrum. It is cruel and thoughtless to behave as if it will. The expectations are too much. Many of our kids have severe cognitive and physical impairments. They won't go to college at 14, or at all. They won't get married and have children of their own. They hit themselves. They wear diapers once grown. I guess that doesn't make for good reading or good television.
Grace and Kate's mom. (Shanell)