This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!

Saturday, October 2, 2010

Voices from the Spectrum

There are so many reasons to want to hear about the experience of being on the autism spectrum from those who live it.  There are some people in the Neurodiversity movement who claim to speak for everyone on the spectrum, but what I've found is that in reality there are as many ways of thinking about being on the spectrum as there are people who can express them.  There is also arguing about which person best represents the spectrum, or how one person should be able to include a variety of viewpoints in what they say.  I think the solution is to get as many voices out there as we can, to let each person speak for him or herself and learn from the variety.  So, to that end, here is a gathering of the voices that I have found:

Daniel Tammet is a young man with Asperger's, synesthesia, and who is also a savant.  In this TED talk he tells us a bit about how he sees the world and processes information.  He has also written an autobiography called Born on a Blue Day that provides a fascinating window into his world and what it's like for him to live with ASD.

How autism freed me to be myself
This is a TED talk given by Rosie King who has autism herself. She talks about her own experiences and perspective and also talks about her two siblings who also have autism.

The world needs all kinds of minds
This is a TED talk given by Temple Grandin that includes many of her thoughts and experiences living with autism and how she was able make a very successful career for herself by using the strengths that her autism gave her.

Meet Taylor Morris
This is a blog by a girl in high school who has Asperger's about herself, how her mind works, what helps her, and generally her thoughts about autism.  She has video blog posts, writing, and her and her mother share a lot about her story and what has helped her.

Autism's Gadfly
This is a blog done by an older man with high functioning autism.  He shares his take on autism and how it has affected him, as well as his thoughts on current goings-on in the autism world.

This website by and about Donna Williams gives a lot of insight into how she thinks and experiences the world.  The page lists the books that she's published, including her autobiography, which gives more detail about her extremely unusual life.

This is a moving piece written by a woman about what living with autism and discrimination has meant for her called No You Don't.  Trigger warning, this woman has experienced some intense abuse and talks about it.  

This is a letter written by Sondra Williams, a woman who has autism herself and is also the mother of 4 children on the autism spectrum, to the autism blog Age of Autism regarding the case of Sky Walker.  (For background reference, Sky Walker is a boy with low functioning autism who killed his mother during a rage.  His story is such a tragedy and highlights so many things wrong with the world of autism services).

There are two people who I've come across who were both considered very low functioning until they learned to spell/write their thoughts, both in the preteen or early teen years.  Before this time they were essentially unable to communicate and no one knew that they understood what was being said to them and going on around them.  Sue Rubin wrote and created a movie about herself and her life called "Autism is a World".    When Sue was a child she was considered to be profoundly mentally retarded with an assessed IQ in the mid 30s.  Later, after she was able to communicate, her IQ jumped about 100 points into the 130s.  At the time of the film she is attending college studying history.

The other person is Carly Fleischmann who began to spell around age 11.  Unlike Sue, who was taught, Carly surprised everyone with her ability as no one had thought to teach this to her.  Carly has a blog called Carly's Voice, Changing the World of Autism that features her writings, news pieces about her, answers to questions that people have sent her and a way to contact her if you have a question for her.  This news article abut Carly has some wonderful quotes from her in it.

This is a video about a man named Watson Dollar who began to type on an iPad at the age of 20, which allowed him to begin to communicate with his family and other people around him.  Again, like with Carly and Sue, despite the fact that he had never been able to show his intellect or communicate, he had a full intellectual life in his head with his own thoughts and opinions that was able to emerge once he found a way to communicate.

These stories told by people in their own words about their own experiences with autism are a reminder to be humble about what we think we know about autism, and especially to be wary of the label of "low functioning".  You just can't make assumptions about what is going on inside another person's head, especially when they struggle to communicate or can't communicate at all.  There's a saying you hear around the autism world that goes like this "presume intelligence".