Speak UP! or Supercalifragilisticexpialidocious

Kyle said his first words when he was a year old (all done). He added a few more words. When he was 16 months he stopped talking. We started seeing a speech therapist when we moved to Los Angeles from Chicago in June 2005. With her guidance, Kyle started speaking one or two words to express his needs (I want, milk, and help). We also started using sign language to ease everyone’s frustration. He was making excellent progress in speech until he started preschool in September 2006. Without warning he stopped speaking to his speech therapist and teachers. He even stopped speaking to us at home. We reverted back to sign language but his lack of speech was becoming a problem. We knew he understood us and had the ability to answer us but he refused.
I found some emails from that time that expresses the depth of his speech problem:

10-26-09
Speech: His speech has been spotty. Saturday, he and I spent the day with my sister and the twins. He did not speak while we were there. He also does not always speak to us in the morning. We tell him to go get Tara and he starts speaking then. Tonight he was reading a book and talking to a stranger.

11-10-09
Today Kyle's speech therapist handed us some literature about Selective Mutism. As we read the information, we discovered something that explained what is happening with Kyle rather than autism (although Selective Mutism and autism can exist together). This is totally new to us but we thought we would share the information with you. The treatment is similar to autism except we remove ANY expectation for Kyle to speak (something Kyle's speech therapist at school recommended). A few suggestions stood out to us. Play groups with children from school (also recommended by Kyle's special education teacher) and playing school with a parent at the actual school to lower anxiety.

11-11-06 (after a difficult feeding session)
I think the session showed me how severe this problem is becoming. I think he was upset because he wet his pants but was afraid to tell me in front of you. I thought it was because he thought you were yelling at him. Then he became angry with me for not knowing what was wrong. That is my take on what happened. Who really knows? The point is if he does not feel comfortable or if he feels pressured to talk, he won't. This will make getting his needs met very difficult. I have started some research and there is a conference in LA in January. Most likely both my husband and I will go.
Thank you for your support. I know that his feeding is slightly impacted by selective mutism. This is just another thing for us to figure out.

Aaron and I realized that we needed to research selective mutism. There was a conference in our area in January. For once we were able to attend the conference together. The conference provided us with a deeper understanding of what we could expect from Kyle. We left with some books, cards to explain selective mutism, and a renewed vow to help our son. We discussed having him formally assessed, but rejected it. His autism diagnosis provided the therapies while selective mutism was not a well known disorder. We felt that his autism therapies could be modified to help him with selective mutism as well.

Selective mutism is a severe social anxiety disorder where a person who is normally capable of speaking is unable to speak in given situations, or to specific people. Unable…not unwilling…not just being shy…unable to speak. With all the progress he has made over the years, Kyle still stops speaking when he is nervous. He is very talkative when he is comfortable. I highly recommend Selective Mutism Group for more information about this developmental disorder. Here is a video I found online from a girl who has SM.



About my title...Here is the lyric from Mary Poppins about Selective Mutism:

Because I was afraid to speak when I was just a lad
My father gave me nose a tweak and told me I was bad
But then one day I learned a word that saved me achin' nose
The biggest word you ever 'eard and this is how it goes