Monday, February 8, 2010

Still waiting for the Mother Ship

On Saturday night HBO aired "Temple Grandin" the story of an adult woman with autism/aspergers.  To tell the truth, I watched it twice.  Temple Grandin had been my "beacon" of hope when my son was first diagnosed with high functioning autism.  "Rainman" was the only movie about autism out in 1993.  The end of Rainman broke my heart, and I can still see him leaving on the train in the end.  So Temple Grandin's story was my focus.  "Thinking in Pictures" was her first book. It opened my mind to a world I hadn't even known existed, until "A" was here.

The first Autism conference I went to had Temple as the keynote speaker.  They introduced her and she walked up to the podium dressed in her signature vintage cowboy shirt and tie.  She told stories of her childhood, her adult triumphs and struggles.  The entire room was fixed.   Parents sitting on the edge of their seats. You could hear a pin drop.  She was the first adult on the autism spectrum I had ever seen.  Later that would change. After a morning of hearing parents complain about their schools, service providers, etc.-- she was refreshing.   When she finished, we applauded, and some stood up.  She looked away, almost embarrassed.

When we broke for lunch, there were large round tables that sat  8.  To my surprise Temple sat at my table.  A mother and her 13 year old daughter followed and sat right next to Temple.  The mother tried to engage her daughter to connect with Temple, but that wasn't happening.  The 13 year old was using her hands as well as her spoon to shove food in her mouth.  Food was flying everywhere.  Temple watched this kid.  Then, Temple turned to the mother and said: "She is eating like a pig! Just because she has autism doesn't mean she should eat like swine do!  You need to teach her some table manners.  It's gross!"  Temple slid her chair away from the table, picked up her plate and left.   The mother was stunned.  One by one we all left the table. The mother sat there trying to eat her food as her daughter reached over taking handfulls off her mother's plate.  It was gross, Temple was right.

At that moment a light went on for me.  My son was going to learn manners.  It was my job to teach him this.  That would mean work for me as well.  Most of the parents I met were so overwhelmed and focused on cures and blaming of vaccinations.  I felt it really didn't matter how "A" got autism.  He had it, and it was my responsibility to teach him things he would not learn on his own.  I also got fed up with "cures."  I tried diets, vitamin cocktails, and many other "cures."  What became clear was if I spent all my time trying to cure my child--I would not have time to teach him social skills he would need in life.  "A"'s father had the "bad hair cut" theory I saw so often.  People feeling they will somehow out grow autism.  My family wanted him placed in "a home."  Sadly my family never knew my son, as they could not accept him for who he was.  Acceptance of autism in my life came that day, and the work began.

Below is "A" relaxing with his chickens and safety glasses.

I loved these conferences.  I had landed on a planet with my people.  They understood, as few others could.  I went to a MAAP conference (more able autistic persons) and met a whole group of high functioning/aspergers adults.  When they walked into the lobby people stared.   In that hotel I realized that my son was going to be an adult in an adult world one day.  I was  made painfully aware of how people stared at adults who were different.  At this meeting, I met members of ANI.  ANI was founded by Jim Sinclair and was a group of adults who had autism that hung out together on the ANI internet list serve as well as real life.  They formed their own summer camp "Autreat" that we would attend that summer.  We met "Gnat" a woman from the internet with HFA, who would be a great influence over my son in years to come.
Below is Temple relaxing with the Herd.  

The Temple Grandin movie brought back many memories.  Temple was mesmerized  by sliding doors and hated to go through them.  "A" could not handle escalators, and we knew every elevator location in every store.  At one point she lay among cows in the hay.  "A" used to lay down and let his chickens walk all over him.  The painful scene when Temple's Mother was told to institutionalize her brought a lump to my throat, and tears to my eyes.  Been there, done that.  I always say my son had angels along the way: teachers, doctors, autistic friends.  Temple had hers too.  I had forgotten about "A's" obsession with infinity, until I saw Temple ask over and over again "where do they GO?" Meaning an animal or person who had died.  He used to ask: "what is infinity minus one?"  His math professor Grandpa (also on the spectrum) used to say that was impossible.  Years later we would find an article that sort of answered the question. Watching Temple hold her ears when her teacher/angel launched a rocket.  We had lots of ear holding, and my son wore ear plugs to school for years.  "A's" first grade teacher let him make intricate machines out of cardboard boxes and tape at recess that was too loud for him.

An interview the with real Temple follows.

I sent my son to special camps in summer.  I felt it was important for him to learn to live without me.  And at 22 out on his's paid off.  We really couldn't afford it.  But I sent him anyway.  And he got thrown out of a few camps, and plenty of schools for hitting kids and teachers.  Temple went through the same experiences.  Do you think my son wanted to go to these camps?  Nooooo he did not.  It was a struggle, to say the least.  Temple had an Aunt who had a ranch in Arizona.  "A" had Gnat who would let him be who he was.  Teaching to those strengths was the way forward to an independent life for both of these people with autism.

I am saddened when I see parents caught in the "cure trap" and not dealing with behaviors.  One mother I knew had spent 10 years trying different cures, and had a 17 year old who couldn't go anywhere besides school and home.  I am also broken hearted when I see parents "love them to death:" who keep the child at home into adulthood protected from the world by home.  By doing so, the person with autism has little chance of making it in the world without the parent.  Even though autistic people have a higher mortality rate than normal children growing up...I believed I was going to die before my son.  "A" being able to make it without me was imperative.   I was out spoken about these issues, to many a parents and school administrator's head aches.  "He's not going to be a child forever" I would tell the school.  They reached for their ibuprofin, or asprin bottles.

Oliver Sacks wrote a book: "An Anthropologist on Mars."  In it he has a chapter about autism and Temple Grandin.  Many people with autism feel they are "aliens."  Google "alien and autism" and the list is endless.  Recently I heard a man interviewed on the "Coast to Coast" radio program who said he felt the rise in children diagnosed with autism had a reason.  He felt they were here to "save the planet."  Wow, talk about pressure to perform!  "A" told me this one morning at 7 years old when I was trying to get him to hurry so he didn't miss the bus: "You are just my host mother.  The Mother Ship will be here to get me soon."  The Mother Ship has never arrived.  I hope they don't come and get him.  I love him as he is.  In Temple's book and movie she says: "I am different, not less."  Exactly.

Below are a few links to what I have just written about.  1 out of 100 boys are diagnosed on the autism spectrum today.  Most likely you will know someone who has a child with autism, if not your own.  I included Oliver Sacks, Temple Grandin's, ANI, Jim Sinclair's " Don't Mourn for Us,"  and Wrong Planet for starters.

Thanks for reading.  I am still amazed that you do.
xo Suz
"don't mourn for us" by Jim Sinclair:


  1. Good morning! Just stumbled here via Etsy, via Skull-a-Day's blog post from about an hour ago [congratulations on that btw, add that to your list! :D].

    I thoroughly enjoyed this post. I meant to watch the Temple Grandin special when it played, but I missed it & will have to catch it on demand. Being an animal lover, I'm saddened by her work, but her story is truly inspiring. I worked for 5 years for a man who had autism, assisting him so he could live in his own home. His parents were very involved in advocating for him, but were absolutely wonderful about allowing him his own life & privacy. It's so nice to hear you've been such a strong advocate for your son despite all the outside obstacles so he could be on his own.

    I'll be checking out the YouTube links in a minute, thank you for those. I'd look into the others, but I have Oliver Sacks' book [along with "The Man Who Mistook His Wife For A Hat"], have the other sites bookmarked [what a remarkable change WrongPlanet has undergone since it first began], and have long loved Jim Sinclair's "Don't Mourn for Us"!

    I apologize for the long comment, but it was awesome to see & read this. Also, love your Etsy shop - the skulls are great! So nice to see you, Kim. :)

  2. Great post! I have no personal experiences with autism, but your thoughts were very touching and pointed. Thank you for sharing!

  3. I too enjoyed this blog post and thanks for sharing it with us. Your son is lucky to have such a smart and loving Mom, and you are lucky to have him too. I am also going to watch this movie about Temple on HBO just as soon as I can as it looks very interesting and she looks like a very interesting person. If I had not talked to you I would probably never have known who Temple is. Thanks for sharing and best of luck and well wishes to you and your son.