I am being an advocate to help others like me achieve living a life with the chance to communicate with his or her own words. I was not born with the ability to speak freely. I was not born with a body that cooperates easily. But I was born with a thinking mind. I was misunderstood for years because my inabilities masked my intelligence. I became like a prisoner of my own silence. I am now free because of RPM.
I tell my story because I am not the only autistic person who thinks but can’t talk. I am convinced all nonspeaking autistics have thoughts they would love to tell if they could. That’s why I advocate for my nonspeaking brothers and sisters.
Imagine if you could not talk or write on your own. How would you feel? You would feel enormous frustration and sadness. That’s how I felt because no one really knew me or accepted me as I was. No one thought autism was ok. Everyone saw it as bad. Mom was so depressed because of me. But now Mom is so happy because she now understands.
I know not everyone is an advocate. That’s ok. I am an advocate because my life was saved by learning to communicate by spelling. I cannot remain silent about this when lives are at stake.
Old ways are eventually abandoned for better ways. Some will fight for the old ways but in the end they will lose. May you find yourself on the winning side of history.
One of the self-advocates presenting at Motormorphosis 2018
I am happy people are writing ASHA. We need to come together as individuals, supporters, and advocates who want to see everyone’s right to freedom of speech protected and preserved.
I think ASHA would be violating its own ethics if it were to pass its proposals on RPM and FC. Peace is being able to express myself in writing. I am free to use my own words when I type my words. I don’t need to worry about saying the wrong word or not being understood by my poor enunciation.
Typing is better than PECS and picture based communication. I don’t think in pictures like Temple Grandin. I love word forms of communication. There are so many words to choose. Each has a little different meaning like delicious and savory. I like to have full access to all the words at my disposal. Pictures don’t allow this freedom. I can’t distinguish between a good day and one that filled me with awe watching God paint the sky with luminescent pink, orange, and glorious beams of sun bursting through majestic clouds. I was made to express myself in my way no matter if it is different than the majority. No one should have the right to stop me or anyone else from communicating.
I have been listening to various letters written to ASHA. Some are passionate. Others are logical. I love that people have different personalities that come out in the words they choose. I want all people to be able to express themselves. With RPM we learn to express ourselves showing who we really are in our personalities. I am writing to keep my voice and protect the future of freedom of speech.
The following letter is in response to the proposed policy on Rapid Prompting Method (RPM) drawn by the American Speech-Language-Hearing Ad Hoc Committee on Facilitated Communication (FC) and Rapid Prompting Method (RPM). The proposed policy can be read here.
Hello ASHA Committee,
My name is Philip Reyes. I am an RPM user. I am writing you to reconsider your position on RPM. I cannot communicate my ideas without someone to help me in various ways. I need help to start, stay on track, get through impulsive loops, and calm me so I can spell my thoughts on a letterboard or keyboard. I am asking you to put yourself in my shoes. I would be trapped in my own mind if not given RPM. I have tried many other methods to learn to communicate: ABA, speech, OT, Alt-Chat, and PECS. I was not able to make more than a few simple requests using those methods. I wanted to say much more. I was frustrated most of the time. I could not do much in school. I was made to do very basic lessons over and over without hope I would advance. I never want to return to those methods because they did not work for me. I could not express my true thoughts and feelings with them.
I fear that passing this proposal will take away the support I have at school. I have made so much progress at school. I started at regular public school in grade five. I am happy with how far I have come. When I started, I had lots of meltdowns and anxiety. I had poor self-regulation. I was not good at communicating. I started in all special education classes except specials. I slowly got better at spelling with everyone and regulating my body. I got to add more regular classes with my neurotypical peers. I got to have more normal experiences. I even walked across the stage for 8th grade graduation and got to go to the dance. I am now finishing my Freshman year in high school. I have two amazing aides who support me so I can participate in regular classes and take the tests. I have teachers who believe in me and cheer for me. I have gotten better at sitting calmly and controlling my body. I even gave a presentation in front of my global studies class. I love school so much.
I fear the proposal will prohibit educators from working with me unless I can type completely independently. This may take me a very long time. I cannot waste my life while trying to become perfectly independent.
I urge ASHA members to do what is humane and good. Think of me and the many others who can be given a voice and a better life because of RPM.
If you would like to contact ASHA to voice your support for RPM, here are the ways they can be contacted:
CONTACTS Postal Mail American Speech-Language-Hearing Association Attn: Board of Directors 2200 Research Boulevard Rockville, MD 20850-3289 USA Email
I feel people’s energy all the time. It comes from their emotions. I try not to let negative energy affect me but it does. Positive energy has only positive effects. I feel good when people are happy and positive around me. But I feel very bad when people are tense or anxious. It leaves me energy drained. In a place where there are lots of people, I especially get drained. I feel overwhelmed by the mass of people with so many loud feelings. They can be feelings of joy, discomfort, or even impatience. The loud feelings all mixed together in a big crowd are painful to me. I can now join in on happy group events like church and movies. Mostly people have relaxed energies there. Some crowds are harder. When I went to my sister’s graduation at the Big House in Michigan, I could feel so much mixed energy- people were so cold, tense, but also proud. I felt sick and queasy because the energy was so loud and mixed up. I had to leave no matter how much I wanted to stay. I did better at Ana's indoor engineering ceremony. It was probably because it was warmer and people were more tired and relaxed by the afternoon.
People may wonder if they can control their energy transmitted to someone like me. Yes they can. If I am causing you stress, you can choose to let your anxiety show or you can show compassion. You may lower your voice and calm down by slowing down. Be patient and tell yourself that making a person feel loved is the most important to helping us feel regulated. It means a lot when people decide to be positive and loving.
My name is Lawson Barnes and I am 12 years old. I live in Fayetteville, Arkansas with my mom Leslie and my dad Brant. I learned RPM about four years ago. My life has changed drastically since not having a way to communicate.
As I write this, I am on a six week trip through Britain. I chose to study Britain a year ago, and now I am seeing and experiencing all the places I have studied. I want to be a writer, and what better place to embark on that journey? The past two weeks have made a lifelong impression. If you love Dickens, take in the breeze and sea view from Bleak House. If Tolkien is your inspiration, stroll the lively streets of Oxford. Today I traveled the River Wye from Tintern Abbey across the Brecon Beacons where Wordsworth found glorious scenes that he translated into words.
Autism gives me the challenge to live in a typical human’s world, but it also gives me the ability to breathe in the smell of a rainbow as I feel the energy of my heart connect with the power pouring out of an ancient circle of stones. So next time you see an autistic like me, maybe know that pity is not the emotion you should feel.
In August 2014, my husband and I pulled our then 14-year-old daughter Chana, who is autistic and non-verbal, out of the school system. We weren’t sure what we were going to do as homeschoolers, but we knew Chana was making absolutely no headway in public school. She even seemed to be regressing. Because of the severity of her autism, I didn't believe at that time that Chana understood what I was saying to her. Though I was always kind and cheerful, I didn’t make an effort to prepare her much for daily life. It seemed useless to have discussions with her since I didn’t even think she understood a phrase as simple as “we are going to the store.” Her regularly hitting her head and crying was further proof to me that she wasn’t capable of “getting” was what going on around her. In late September, one of my daughter’s former therapists told us about the incredible success a student of hers was having with Soma Mukhopadhyay’s Rapid Prompting Method (RPM). Soon our lives were completely transformed by RPM. Our homeschooling went from rote repetition of basic skills to almost grade-level learning. I couldn’t believe what was happening! Our autism journey had never been a real success story, no matter how many therapies we had tried (and we had tried them all). Now our daughter was making the strides we had only dreamed of. Her head-hitting and crying basically disappeared. We were connecting with her on a level I could never have imagined. One of the things I love most about Soma’s method is that it is an academic program. So everything is based on learning — language arts, math, social studies, science, etc. I especially love that students are studying history. How amazing it is for our kids to learn about life, their hopes and fears, in context of what others have already experienced. Frankly, our whole world would be better off if more people learned from the experiences of our past! For autistic students, thinking about issues via academic subjects has the added bonus of decreasing anxiety, a huge struggle for so many of our kids. April is not only Autism Awareness Month, but also the month America celebrates Jackie Robinson Day. Chana and I recently did an RPM lesson on Robinson, the first African American baseball player to play in the major leagues. When Jackie was approached by the Brooklyn Dodgers’ manager Branch Rickey to join the team, they both knew that breaking the color barrier would be an incredibly tough journey for Jackie. He received taunts and jeers on the field (and even private death threats), but through his grace and fortitude became a champion for equal rights. Chana rarely talks about her autism and I do not usually bring up topics which could be emotional for her. But when I told her she was invited to write here for Autism Awareness month, she became extremely passionate about sharing. So I thought it would be very interesting to ask her about her autism experience in relation to what we learned about Jackie Robinson’s life:
Jackie Robinson was judged based just upon his appearance. How does that relate to your experience with autism? Do you feel judged? CHANA: I UNDERSTAND WHY PEOPLE WOULD NOT BELIEVE IN ME. KNOW AUTISM IS NOT STUPIDITY. AUTISM CONTROLS ME. FEELS LIKE HAVING A KNOCK OUT PUNCH. MAKES ALL OF LIFE INSANE. I MUTE ALL IMPULSES. Interesting you mention impulses. Branch Rickey told Jackie not to fight back when others were attacking him. Do you think Jackie had to also “mute his impulses?” CHANA: YES, KNOWING WHEN TO APPLY PATIENCE INSTEAD IS KEY. Jackie was able to break the color barrier which helped lead to the civil rights movement. What do you see as the future for autism? CHANA: AUTISM MAKES HEADWAY. AUTISM WILL FIGHT PROUDLY, MEANING IT IS ALWAYS A FIGHT FOR LETTING PEOPLE WIN A VOICE. Everyone was not against Jackie Robinson. Many good people in our country supported him as he bravely stood up for what is right. What can others do to support people with autism? CHANA: DON’T LET AUTISM GIVE YOU A MISIMPRESSION ABOUT SOMEONE. TALK TO THEM. What if the autistic person has no way to communicate? For instance, they are not even using the letter board yet? CHANA: [YOU CAN STILL] HAVE A NICE CONVERSATION. TELL THEM GOOD THINGS. THAT MAKES ME HAPPY IN MY HEART. In honor of Autism Awareness Month, Chana and I hope you will initiate a conversation with someone with autism. Maybe a non-verbal or unreliably verbal person who would commonly be misjudged. Sit and read a great story from history together. Talk about “good things” from the lives courageous figures like Jackie Robinson who will inspire them and whose stories will sustain them as they fight to win a voice.
Chana lives with her parents and 3 younger siblings in the Washington, DC area. She loves music, working out at the gym, and the approaching warm weather. Chana is very thankful to Philip and his mom Lisa for giving her the opportunity to share her thoughts.