Letter from Renee

To Not Speak of Autism is to Make It Unspeakable

Many times I have heard comments on our APOV slogan. It has been a recurring theme of mine for many years. I thought it might be an appropriate topic to describe how it came to be for me and how it is related to our mission here at APOV.

A number of years ago I was struggling with the decision of whether or not to tell my daughter about her autism spectrum diagnosis. She was just beginning to notice that she was different from her friends. I was scared, nervous. Will she think she is defective, or bad? Will she use it as an excuse for not trying? I turned for advice to where I often found it, other mom’s of children with ASD’s. At that time I was very active on a message board for parents of children with Asperger’s and PDD-NOS.

It was at this board that I had met Candes years ago. She and I were in much the same situations of having large families with multiple members affected by autism spectrum disorders as well as having background working in the field. Candes was one of the first to reply to my post about whether or not I should tell my daughter about her autism. Within her reply she simply told me a quote she had heard from another person with Asperger’s “to not speak of autism is to make it unspeakable”. I don’t know if she knew then what effect those words would have on me but they changed my very view of autism and how I would relate to autism. I suddenly realized that my children were wonderful and perfect the way god made them. I didn’t want anything to be “unspeakable” about my children. By making it unspeakable they would learn to think my worst fears, that they were defective or bad.

Not that it has always been easy. They are not defective or bad but it certainly has been a challenging experience. However, not speaking of it does not make autism go away. It is something they have to learn to accept about themselves and grow with. Autism is not the proverbial “elephant in the room” we cannot speak about. It is a difference. It is a different way of looking at the world, of processing it and perceiving it. It isn’t going to go away because I don’t talk about it. It will only make it a bad thing that we can’t talk about.

As my kids have grown the meaning of this phrase has grown for me as well. There have been plenty of instances where talking about autism to people in the community was not met with the best responses. One thing parents of autistic children know about is that feeling in the pit of their stomach when they have to explain their children’s behaviors to some stranger. Whether it be the coach of a team we want to mainstream our children into, or the nosey adult making a comment in the store. Suddenly speaking of autism becomes very difficult and the listener not very receptive. I also know of many adults who fear speaking of their autism for the fear of how it will be accepted. They feel that they cannot tell coworkers, friends and peers for fear of the reaction they will receive. Students in middle and high school fear the teasing and bullying that will surely occur if they speak of their autism. It was in realizing this that I realized that one of the most important things I must do for my children is to spread awareness so hopefully some day when they are adults they won’t have to be embarrassed of their differences.

When Candes first mentioned starting an e-magazine dedicated to autism and spreading the word to parents I saw this as my opportunity to spread the word on a much larger level. To have a better chance of impacting the world to make it a better place for my kids with autism and for their siblings. Even for typical siblings being embarrassed of their autistic siblings is a very hard thing.

Every parent wants to strive to make life a little better for his or her children. When your children are not quite typical that task becomes a little more complex. I feel honored and extremely lucky that Candes and I have this opportunity to make this world and their lives hopefully just a little bit better for my children.

Renee Baer
Content Manager - Chairman of the Board of Directors
Another Point Of View on the Autism Spectrum
Contact Renee at ContentManagerAPOV