Thoughts from the Open Kitchen: Jenna vs. Raymond Babbit

Every parent worries. Not every parent worries about how they describe their daughters disorder to people she meets. This is something I struggle with daily. My daughter Jenna, who is pretty much my favorite person in the whole wide world, was diagnosed with an Autism Spectrum Disorder when she was almost 2. The actual diagnosis is a PDD-NOS, Pervasive Developmental Disorder, Not otherwise specified. Yeah, try saying that ten times fast. Want another test? Here is a clinical definition. http://childstudycenter.yale.edu/autism/information/pddnos.aspx I barely understand it, let alone know how to explain it. So I look for examples in media.

Dustin Hoffman deserved the academy award he won for his 1988 role in RainMan. He played Raymond Babbit, an adult male diagnosed with Autistic Savant Syndrome. Before my daughter was born this was my only known introduction to someone with ASD. What is fascinating and sad is that this is still the best, most readily understood example I can give to people of my generation to explain how my daughter interacts with the world.

Problem is, Hoffman isn't an Autistic adult. He is a very talented actor. His portrayal of self injurious behavior, his portrayal of repetitive flapping and his strict routine of TV shows are not all that make up the life of someone with autism. There are problems with using him as an example, which are detailed in this blog: http://www.interactingwithautism.com/section/understanding/media/representations/details/38 So I have continued to look around for other people in media to help folks I meet understand my daughter a little more.

So here comes Temple Grandin. She is an articulate, brilliant and high functioning example of an autistic person. Lots of people lately have been talking to me about Temple when they meet my daughter. I think Temple is great in the fact they she really opens peoples eyes to different minds, different ways of thinking. I think everyone should watch her TED talk as it is very good at describing the High Functioning end of the Autism Spectrum. I also think everyone who does watch it should watch her mannerisms when she speaks about low functioning autistes. Also, Temple tends to lend an autistic diagnosis to people like Einstein and Tesla, Jefferson and Sagan. This in no way helps anyone understand the Autism Disorder. In my opinion, it simply confuses folks.

So I have continued to look around for more instances of Autism in media and finally have found one. It has what anyone questioning what the disorder is like for Children and families affected by it would need. Where you might ask? On Netflix of course! A Mother's Courage: Talking Back to Autism is the name. I recommend it if you are one of those people wondering what Autism is like for those affected by it. Spoiler alert: if you emote, if you are free with your emotions, be prepared with tissues. This is a tear-jerker but well worth it for the real life situations it shows. What I especially like about it is that it focuses on the low functioning and middle of the spectrum instead of the High Functioning end.

My daughter isn't at either end of the spectrum. She is in the middle, like most children and adults with Autism Spectrum disorder. She has lots of abilities that are amazing, including an encyclopedic memory for songs and an ability to "script" scenes she has seen only a few times. She has learned to mimic people in language and action. She struggles however with over stimulation and her ability to communicate her own thoughts. Also, she has issues with spacial awareness and runs into inanimate objects from time to time. What I want to know is what her aspirations are. When she is upset I want to know why and how I can help. I think this movie can help and more. It can help you understand what people affected by autism go thru.