Chapter Three- That Cow Woman

That Cow Woman

One of the first books I ever read that was “Thinking in Pictures” written by Dr. Temple Grandin who has autism.

She wrote in an intelligent, thoughtful manner. When I was feeling some despair as to where Lukas’ future would take him, I read this book. It made me realize that Lukas and I would be able to have a thoughtful conversation one day. Here was a woman who had no ABA at all and look at her! She is a professor in a college and has done wonderfully. We might not have had an early intensive intervention program set up for Lukas at two like the Lovaas kids but he could still do well just like Temple Grandin did. Poor Temple had to struggle in learning to read. If she could have trouble with speaking and reading and still become a professor, then Lukas could do anything! He could already speak. He just had to learn to communicate in sentences. He could read already and he wasn’t even in kindergarten.

Over time though, I stopped mentioning Temple Grandin when speaking to people. One of the most common remarks I would hear was “oh.. isn’t that the chick with the cows?” Yes, she did often speak about cows in her books but the larger point was being missed: there is hope. I wish she had a better book editor.

Our second speech therapist borrowed my Grandin books. She mentioned that she was going to see her speak at an autism conference in Atlanta. The brochure touted Temple Grandin as being “the most successful autistic person” and one brochure even said she was CURED.

Now wait a moment. CURED? Grandin never even proclaimed herself recovered let alone cured. Most successful person with autism? She has chosen a life of celibacy and has no desire to ever fall in love and be married. She has problems with anxiety and uses medications to help her. This is the most I am allowed to hope for? As an adult, she still struggles to remember to look at people. Grandin herself says she still has autism and still deals with the problems that autism presents.

Well meaning professionals would pat me on the shoulder and say, “Don’t worry. Look at Temple Grandin.”

I began to hate the cow woman. She was no longer a symbol of hope but a level of expectation. He wouldn’t be able to love another person deeply and he would have no desire for marriage or children. He would need prozac and obsess about cows. It would be all right though because he could have an independent life and maybe even get a nice job with coworkers who would learn to hand him a bottle of deodorant and let him know he smelled.

It was ASSUMED that my child wouldn’t want those things merely because Temple Grandin didn’t want those things. Temple doesn’t want a husband so Lukas won’t want a wife. Temple built a giant squeeze machine to give her body deep pressure so Lukas needs to go to occupational therapy once a week for sensory integration therapy.

What Temple needed, Lukas would want.

Temple Grandin once said that if she could snap her fingers and not be autistic, she wouldn’t do it. Autism was a part of who she is. Therefore, many people kept telling me that I should stop the ABA because it invalidated Lukas’ core being. Some suggested that the very idea of ABA was abuse because I would wipe out the child I had. They claimed that by stating I wanted a cure for Autism or that I wanted my child to recover from autism, that I was stating I did not want my child. You must stop this intervention because Temple Grandin is happy with herself is the basic message some of these people were giving. It is bizarre and twisted logic but it still makes me angry. I was being judged for choosing ABA because Temple Grandin was happy being herself.

Temple Grandin joined Catherine Maurice on my bookshelf.

It would be a while before I could appreciate her again. It actually took some readings by Donna Williams before I could appreciate Grandin. Donna Williams is also an adult with autism. She is probably more in touch with herself and how her body and mind work than any NT adult. She said that autism was not her. Autism was an information processing problem that she had that tried to prevent her from being her. She said that she would fight autism. When I read that, I found myself thinking “will the real autistic please stand?” Either temple Grandin was a fraud or Donna Williams was.

Just who speaks for autism?

They both do. They both speak for their own experience and their own feelings. They both speak for themselves. I couldn’t appreciate Temple Grandin again until I realized that every person with autism is different. Temple Grandin doesn’t represent Autism. She doesn’t speak for Lukas. She is one woman who has autism and has shared her own experience. She is a neat lady with a lot of wonderful talents. I can’t fault her for other people misrepresenting her. I was wrong to turn this soul into a symbol of anything. Temple Grandin or Donna Williams did not define Lukas. Lukas is more than a label or another person’s beliefs.

Autisms Lesson Number 6: Many will try to speak for Lukas because they say they are autistic or because they say that are autism experts. Remember that they mean well but only Lukas can speak for himself. Most these people are not necessarily trying to be malicious. Some are egotistical. Some lack the ability to see that their experience isn’t someone else’s. Some are so narrow minded that they can’t allow for other possibilities because it would challenge their own beliefs. Lukas will speak for himself when he is able to understand who he is. Many NT adults never reach an understanding of who they are and no one would ever try to speak for them. Even I, his mother, can’t speak for Lukas. I will always try to remember to not shackle him with others’ expectations and experiences. He stands on his own.