My Lived Experience as a Semi-Verbal Autistic Adult
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By Toby J.
Who is TJ?
Hi! I’m Toby, but most people just call me TJ. I am 18 years old, and I am a semi-verbal autistic person. I use an AAC device and sometimes some low-tech AAC, such as communication cards. I was diagnosed with ASD around the time I had just turned 17. I was seeking an official diagnosis so that my school would finally help me and follow through with my accommodations. In elementary school and junior high, teachers noticed I wasn’t very vocal, and to help me, they created my first set of communication cards. Currently, I am trying my best to finish high school. However, because of my autism, it has been difficult. Most people my age have already graduated, and I am still working through 11th-grade courses. I try to remember that everyone is going at their own pace and how long it takes me to finish, or finishing at all, does not define my worth. |
What Types of AAC Do You Use? And When?
I primarily use an AAC app on my iPad called Chatterboards. I keep my iPad with me at all times in case I need it. I’ve programmed a few buttons for ease, but I can usually just type out what I need to say. I use it everywhere. When I was part of my school’s student council, if I wanted to share my ideas, I’d type or write what I wanted to say and hand it to the teacher supervising, who would then read it aloud. I don’t like the voice on the app; most of the time, people can’t really understand it. Instead, I usually hold up my iPad and have them read what I’m trying to say, or I have one person read it aloud if I’m in a group. |
What Does It Mean to Be Semi-Verbal?
I’m not sure if there’s an official meaning. Personally, it means that a lot of the time, I’m experiencing a brain-body disconnect. My brain is urging me to speak, but I can’t get the words out. It’s like I’m stuck or frozen. Or I can’t effectively speak—I’ll stutter and say the wrong words entirely, sort of like when you keep typing the wrong thing, hitting the wrong keys. Or sometimes, it’s a sensory issue. Some days it physically hurts to speak; I can’t handle the vibrations I feel in my throat. Overall, to me, it means not being able to speak all of the time but still being able to speak at times.
What is School or Work Like for You
as a Semi-Verbal AAC User?
It can be tough most of the time, and incredibly lonely. Other students often find my use of AAC strange and don’t really want to interact with me. Most people aren’t patient enough to wait for me to type what I would like to say. It can be the same with teachers. In my first year of high school, I began to use the AAC app on iPad for the first time. Previously, I had used communication cards, but I found the app to be more effective and it gave me more of a chance at communicating past basic needs. The support teacher assigned to me said speaking to me was like “talking to a wall.” However, most of my other experiences with teachers regarding AAC have been positive. I’ve always needed my parents or sister to come in at the beginning of the school year to speak with staff about my AAC device and what to expect. Communication cards have always been in my IEP but never the device, so we always wanted to prepare them. I have a folder on my AAC app dedicated to phrases I use most at school.
For example:
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What Do You Wish Your
(Future or Current) Teachers Knew?
I wish they knew that school can be really lonely as an AAC user. I crave interactions beyond basic requests. It would be really nice to have teachers ask me about my weekend or how my day is going without getting impatient as I type. AND check in with your quiet students. Maybe they have similar issues that I have listed, but parents and teachers have mistaken it as anxiety or shyness. Maybe try working with them, try out communication cards with them. Just be open and willing to explore different ways of communication.
What are 3 takeaways you want educators
to know when it comes to Autism, AAC use, etc.?
- Be patient and gentle.
- Be open to trying new ideas when it comes to communication and how a student displays their knowledge and learning.
- Try to offer alternative learning or assignments for a student who seems to be struggling with traditional learning. Be very clear and specific when explaining a task.
Anything else you'd like to share?
You should try your best to accommodate and help understand a struggling student as best you can, regardless of whether they have a diagnosis or not. Many of us go undiagnosed for years and struggle. All students deserve to have help to be able to thrive and succeed. |
Where can parents and educators learn more
about you or Autism and AAC?
My instagram neuro.dinosaur. I speak about my struggles as someone with autism. |
