I just finished reading Carly's Voice. I purchased the book after watching a video of Carly and seeing a girl who acted just like my Bethany. For me, the book was heart wrenching because I have been through similar struggles and experiences.
Carly's dad, the author, details the daily difficulties in living with an autistic child. As I read the book, I felt all the emotions I had previously dealt with while taking care of Bethany. I identified with the pain, disappointment, confusion, guilt, sleeplessness, frustration and helplessness Carly's parents felt as they walked through life with Carly.
Carly's family hired experts to work one on one with their daughter, but it took nine years before they had a breakthrough. The child, trapped in an autistic body, was mute and unable to let anyone know that she had her own identity.
Even though Bethany has not been labeled "autistic", she acts like an autistic person and probably would be given that label if we were to start over with the medical process. I imagine that she also is her own person with a personality that can not relate to our world in the normal way. This thought gives me hope and inspires me to keep working with my child.
The child's behaviors were much worse than Bethany's. She tore up her room and demolished the kitchen at every opportunity. She threw herself on the floor, banged her head, ran away, and was a danger to herself and others. Like Bethany, she often rocked back and forth, flapped her hands, and threw temper tantrums. Her family ended up putting her in a group home part of the time so they could manage life. Unfortunately, Carly was abused and they had that difficulty to work through.
Carly has learned to communicate by typing. She can only use one finger, so her typing is laborious. She says that she writes in her head, but it takes forever to get what she is thinking out on paper (or computer.)
She told her own story near the end of the book and answered some questions. This was probably the most helpful part of the book because she explained some of her behaviors. She doesn't look straight ahead because her brain takes hundreds of pictures at once, and she can't focus or make sense of anything. Her body sometimes feels on fire, like ants are crawling all over, or like a shaken up bottle of soda. That is why she bangs herself or throws herself on the floor: to try to get rid of the feeling.
Her rocking helps her cope with all the stimulation coming her way. She has a difficult time filtering out sights, sounds, smells, textures--everything comes at her at once. The teen has learned to audio filter. The different sights and sounds are stored in her brain and she sorts through them later. She said this is why an autistic person may have a delayed emotional reaction.
Carly wants to be a normal teenager. She insists on attending a normal high school, although it has taken much time and work to get to that point. Eager and bright, she wants to be a spokesperson for autism. She says that she can tell about autism "straight from the horse's mouth."
Understandably, she doesn't like it when people don't believe she is the one doing the typing and thinking. She also hates it when people say that she doesn't really have autism because she cares about other people. Since she really has autism, she feels that she has earned the right to say what autistic people are feeling.
Although the timeline in the book was a little confusing at times, I found the book helpful and would highly recommend it for people who have or work with special needs children, especially those who are non-verbal.