I am a 17-year-old autistic with apraxia, which affects my ability to speak as a way to communicate. These are the top 10 things I wish people knew about apraxic non-speakers.
1.) Apraxia makes it difficult for me to carry out directions from my brain.
It is as if my wires were tangled and ended up in the wrong place. This makes it hard for me to demonstrate my intelligence. I can’t speak, handwrite, or gesture what my mind wants to communicate. No matter how hard I try, I am unable to do the action I plan exactly how I imagined. I get embarrassed when my body does something foolish like throwing a random object instead of obeying the order of cleaning up.
2.) I can still get better at planned movement and purposeful communication. Having a good aide helps.
A good aide can help me regulate my nervous system and help me to slow down enough to get my body and brain more in sync. A good aide is a person who is supportive, patient, calm, but who is also able to push me enough to give my best effort.
3.) My lack of spoken words is not caused by lack of intelligence.
I understand what is said and what is going on around me. I don’t need to be taught like a baby. My mind can learn things easily and enjoys mental exercise.
4.) Getting the chance to communicate using Rapid Prompting Method (RPM) has been the best thing to happen to me.
I learned to make my thoughts known by a learning method called Rapid Prompting Method (RPM). It taught me how to listen more carefully, how to engage in learning, and how to show my comprehension by pointing to letters to spell my answers. Eventually, I was able to express what I was feeling and thinking. Being able to speak what is on my mind is something that most people take for granted. I know what it is like not to have a voice. It means not being treated as a fully equal human being with self-directed will. Communication must be made available to people who cannot use their mouths to communicate. Please let me make my own decisions when I can.
5.) Being apraxic is very anxiety-provoking.
I am always on edge when I feel out of control, which is almost all the time. Anxiety has caused me and others like me a lot of grief. My nervous system gets into extreme fight, flight, or freeze. I have had to take medication to help my anxiety.
6.) Good teachers help bring out my potential.
7.) There are much better ways to teach than ABA.
I believe ABA works on a faulty assumption that a person’s outward behavior reflects what they intend. ABA does not take into account apraxia. Many autistic people fail to show their intelligence because they are not given support to help with their apraxia.
8.) RPM is better than ABA because it assumes the person is intelligent but has neurological challenges they need help with.
My challenges are getting going when I’ve gotten stuck, focusing on staying goal-directed rather than in stim mode, and stopping impulsive action.
9.) I very much want to have good friends.
It is hard to carry out close friendships because my communication is so cumbersome. But that does not mean I don’t want to interact. I enjoy being with others even if I can just hang out without talking. Learning to socialize is an ongoing challenge for me, but I very much appreciate it when others put effort into getting to know me. I have made some good friends with others who communicate similarly to me.
10.) Make yourself knowledgeable about autism by getting to know autistic people who can explain how autism is experienced firsthand.
People are most afraid of what they do not know, and being around someone can reduce the uncertainty and help you to find a rhythm with them.
Editor’s Note: To learn more about Philip’s journey with RPM and how it helped him to escape the cage of not having an avenue to communicate, you can read his article, The Cage, below and watch a video of his progression through RPM.
- Top 10 Things You Should Know About Apraxia According to a Nonspeaker - February 11, 2021
- The Cage - August 8, 2019
- Independence through Dependence: Why I Need a Communication Facilitator - June 26, 2019