by Pixie Sky, AAC User Advisor to the NWACS Board
reading time: 3 minutes
The views expressed in this post are those of the author and do not necessarily reflect the views and policies of NWACS. No endorsement by NWACS is implied about any device, manufacturer, resource, or strategy mentioned.
Note: Pixie received support with organization and grammar to help with readability. All of the content was generated by Pixie.
I am autistic, nonverbal, and a full-time AAC user. I started drawing when I was very young to communicate with people. I have also used
emojis,
home signs,
printed communication cards,
American Sign Language,
communication boards,
and speech-generating AAC devices.
I get frustrated with AAC device vocabularies because they’re all made for children. This limits my communication to child-appropriate words even though I am an adult.
I think of AAC as a group of similar but different languages. It takes a long time to learn. Just like babies need years to learn to speak and read. When I was a child, the people in my life didn’t understand this. They thought you just get an AAC device, and the person will just understand and use it. Yelling and saying, “It is not that hard!” is really not helpful. People need to understand that. People who need AAC devices usually also need more help with literacy, reading, communication, and more. My disability is much more than just “cannot talk.”
I do not remember what AAC systems I tried in elementary school. I did not have any interest in communicating then and would just throw AAC tools away. As a teen, I was given a Mind Express AAC device. And later Proloquo2Go on an iPad. Years ago, I also made (with help) a lot of laminated picture cards. I still use these when I cannot access my AAC tablet, like when swimming and skiing. The high-tech systems I use now are TouchChat on iPad, the Beeline grid set on Grid Pad, and Grid for iPad.
I almost always need help adding new words to my AAC devices. And I probably always will. I also usually need help with understanding more complicated words. Things like medical or financial paperwork are usually too complicated for me to understand. It is really frustrating!
I can read with help. I especially like to read YA (Young Adult) High Fantasy and Urban Fantasy books. And some science, nonfiction art, and nature books if they are not too complicated. I prefer reading text that is in a dyslexia font. I usually get ebooks from the library to read on my iPad.
When I think about learning to read, I remember flashcards! As a young child, I loved flashcards with pictures and words. I would play with them for a long time. Flashcards helped me learn to read. All the times my brothers read picture books with me helped, too.
I am not able to write or type. I cannot spell out words. Words that are not easy to represent with pictures are extremely hard for me to learn.
When I think about learning to write, I remember adults punishing me for tearing paper and breaking pencils and pens. Every time I tried to practice tracing letters, I broke the writing tool. Being punished for those things was not helpful.
Right now, my main literacy goal is to learn to make “good“ sentences so people understand me better. Unless something changes, I will not try to learn to write anymore. It was not working at all. It is too stressful to keep trying.
I want people to know that learning to read, write, and spell is so much harder than people think it should be. And not everybody can fully learn. And some people can learn to read but not to write. And all that is okay. It is still so very important to try to teach literacy skills to everybody. No matter what disability they have. Keep trying as long as the person is willing. There are so many reasons to keep trying. Two big reasons are 1) increased safety and 2) increased independence (or autonomy).
