Monday, December 3, 2012

Why We Don't Support Autism Speaks

There is an Autism Extravaganza in our area every year as well as the Autism Speaks walk. Autism Speaks hosts the Extravaganza, and all of the local advocacy groups are tied to Autism Speaks in one way or the other. My son and I used to go to these every year until the year they had gotten Temple Grandin to speak. We never heard anything negative through Autism Speaks up until then.

The local mother they had to speak started speaking about how hard it is to be a mother of a child with autism, and how she can't go anywhere are do anything because of her child's behaviors. Her child was supposed to be high functioning. My son started writing in my notebook about how bad of a mother the woman must be. He wrote that it sounded to him like the mother hates her child. I agreed with him.

When my son was diagnosed at 16 months of age, he was low-functioning. It was very difficult for us, but we got compliments from people when we were in public about how well behaved both of my toddlers were. I could take them in public because they were never treated any different than one another. They knew to not act up in public because they knew that if they didn't I would take them home, and we were often at a place that they wanted to be at. I thought about how the mother must have not disciplined her child at all. I didn't realize that I was not the only person that felt that way.

When Temple Grandin got up to speak, she stated very early in the speech that the biggest problem with many parents of children with autism is how many of them refuse to discipline their children in any way shape or form, and that is why many of the children with autism act up in public. She also stated that the parents often spend too little time with their children with autism, and due to that, the parents did not know the triggers that make their children act up, and that leads to undesired behaviors.

For us, I always knew the triggers, and the biggest one is that my son cannot deal with really crowded places. Instead of shopping at Wal-Mart, where it is super, super busy, we shop at K-Mart or Hastings, where it is relatively uncrowded and busy. Any place that is super loud, such as Mr. Gatti's are places that we do not go. Instead, we go to Pizza Hut and then to the dime arcade, which is less crowded. This has always helped us, and is probably why my son has never acted in public.

Dr. Grandin also spoke about how her mother was more like me. Having autism does not mean no discipline. Unfortunately, I have a lot of friends with children with autism, and it is about 50/50 with whose children act up. Those that are unruly are never disciplined and are allowed to act improperly in public. Those that are well behaved are disciplined, have a structured schedule, and are very, very happy children.

Later, Dr. Grandin spoke how she dislikes Autism Speaks. She stated, "I have been listening to you talk about how all of your money goes to trying to find a cure for autism, when you should be spending the money on funding transition centers for children who have autism. Children with autism becomes adults with autism, and in order to be productive members of society, transition services are in great need." I never thought about it that way.

Needless to say, my son was enthralled with Dr. Grandin. He listened to every single word, and agreed whole-heartedly with her. He wrote in my book, "I don't like that they are looking for a cure, and to have a cure means that the person is sick. I'm not sick. I'm autistic."

My son and I have not attended another autism walk for Autism Speaks, and we have not attended another Autism Extravaganza because the funds raised go to autism speaks. Instead, we do fund raising for places like the Autism Society of America, who spend their funds on transition services for people with autism. Autism Speaks will never sit right with me again.

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