Spelling Gives Us A Voice

By Philip

LS writes: 

Hi Philip!

My name is LS and I'm the mother to a wonderful 3.5 year old autistic boy who is nonverbal. I have been reading through your blog for a week or so and love learning from you! 8 months ago we discovered Augmentative and alternative communication (AAC) and bought my son the app "Speak for Yourself". He is doing amazingly communicating with it! He has stunned his school staff and they have been inspired to try to incorporate the app with as many other children in his school as possible. I am so proud of him for showing that a 3 year old can use a robust communication device and shouldn't be limited to one with only a few words, as they previously assumed. He is showing the world what we already knew - that he is a very bright boy with a huge desire to share his thoughts, feelings, and sense of humor with everyone around him.

Philip, my question to you is whether you have had any introduction to high-tech AAC or whether you have friends or classmates who use these devices? My son does love letters and has a keyboard built into the app and I am sure he will love typing someday but right now he is able to use motor planning to remember where approximately 600 words are on his device and we are constantly adding more. I am new to the world of communication for nonverbal people and have been eager to see if anyone who uses RPM also uses AAC devices instead of or in addition to a letterboard or keyboard?

Thank you for your time! I hope you have a wonderful day!

Sincerely,

LS

Philip writes:

My experience with AAC began when I was 6. I started on Go-Talk. It had only a few icons. It was good for requesting but not much else. Then I got an Alt-Chat. It became my voice at school. However I was not able to communicate with it with my family. They did not know how to use it. I kind of tried but I could not express my thoughts with the pictures. I could only make requests for food. I do best with a keyboard. I am able to express myself best making use of a good vocabulary. I am most happy using letters. The words I spell are what I think. Good communication systems let you say what you really mean. The AAC programs are often geared to me making a practiced response. I have to navigate the pages to find what I am looking for. I can't always find the right picture. It makes it harder to communicate for me. At school, I use Proloquo2go. I use some icons for shortcuts like bathroom and break. I like the combination of icons and text. I am for AAC with a text option. At home I use a paper letterboard or iPad with the Assistive Express app. My app allows me to have an actual voice to what I type.

In making my thoughts known I can be free to live my life how I choose because people can understand me. I am peaceful knowing I am free to really speak my mind. I speak to save my Autistic friends from an established philosophy that is not true. Demeaning treatment of Autistic people must stop.  ABA (Applied Behavioral Analysis) treats us like animals to be trained.  The lack of understanding of autism guides the philosophy that Autistics cannot learn normally or make friends.  Autism is not lack of intelligence or empathy. It is mind-body disconnect and sensory differences. Good accommodations are what is needed. Doing the research on Autistic people who communicate should help professionals in the autism field. I think they should meet us to learn from us.  I want to teach others.

Will you listen?

 High-Tech AAC iPad

Low-Tech AAC Letterboard

(made on computer and laminated on card stock for stability)

Copyright 2015 Philip Reyes.  All rights reserved.

World Autism Awareness Day 2015

By Philip

I want people to know autism is another way of being. I am weary of stereotypes that make us out to be less human than neurotypicals. I have listened to people talk negatively about autism since I was diagnosed. I learned to hate myself and think I was a monster for causing so much hardship. I can't let others continue living under popular ideas about autism. Let’s pretend you are like me. You can't talk; but having a thinking mind, you can understand. Imagine you are each day answering back what you mean to say. But only you can hear it. People hear your voice saying things you don't necessarily mean. They think that’s all you are capable of thinking.  People see you stimming by your repetitive flapping or tapping. They think there is no purpose. They don't understand the minute you stop, the moment is flooded with lights that hum, loud sounds that echo, kids moving too fast for me to keep up with, and people trying to engage me. It is hard on me to put my stims away but I try. People see your hyper movement. They prefer you to sit quietly. It’s hard to feel my body in space. I prefer to move because I can feel my body better and peacefully work. I work better sitting than I used to. The reason is now I get interesting lessons.

Interesting subjects like math, science, social studies, and language arts really stimulate my thinking, ease my mind, and teach me something about the world. I was not always taught in the way I am now. Many years of my life were spent in ABA school. I was made to do my drills over and over until I was so bored and frustrated with my teachers. I would melt down. I am telling you ABA is not the solution. ABA is long hours meeting pointless goals like pointing to flashcards and pointing to my nose. If pointless goals are your passion, then I pity your kids. People need to be able to set their own goals. No person should be without a voice. I believe in teaching communication first. Meaningful communication means being able to say what I really want to say. People must believe we are capable and our minds are intact.

Most importantly, my parents have been great. Love is felt when you are accepted. Love is felt peacefully when you are no longer seen by your momentary deficits but by your attributes that make you a complete person.

I peacefully make friends now. I learn normally. My school values me. I make my own goals. My parents support me by communicating to others about autism and me. They play. They make my life as normal as possible.

I think autism is no better or worse than a typical life. Each life is special in its own way. I love my life as autistic. 

I Am Malala

By Philip

Malala is a hero to me. I think she made many courageous acts to get an education and insist on the same right to education for all mankind. I admire how she spoke out against the talk of the mullahs who said it was wrong to educate girls. She followed Allah and the Koran. She ate halal. She did not disobey her religion. The Taliban made up rules to abuse people. The men of the Taliban were the ones applying their religion wrongly. Peace was nowhere to be found under the Taliban. Learning was banned for all girls. Malala would not stop her education or saying the Taliban each day committed terrible injustices. Pakistan was a violent place to live in. Malala risked her life to save the right to go to school. Malala was shot in the head for what she stood for.  But God miraculously saved her. The person who shot her was forgiven. I admire her for letting peace put her mind to good use instead of revenge. Learn from her example, not from terrorists. Malala became even more recognized and brought her cause to the whole world's attention. She spoke at the United Nations. Pakistan passed law to educate all boys and girls. Malala’s power was more power than the terrorists. I am Malala. 

*Lisa's note- Philip has been learning about Malala Yousafzai from her memoir "I Am Malala" and from watching news specials and Malala's speeches.  She is a role model for so many, and I would say especially for Autistic children.  Even though Malala is not Autistic, she made her voice and position heard in a culture that denied women a voice and an education.  The world listened.  Because of her bravery, Malala has been able to affect the change she so passionately believes in.  There are still many Autistic voices needing to be heard in America and all over the world.  We must do all we can to help pave the way towards better methods of communication and accommodation, quality education, opportunities for inclusion, and acceptance of all Autistic people as contributing members of society.  Malala inspires us to bravely speak and act to bring about the change we want to see.     
 

ICI Conference

The Institute on Communication and Inclusion (ICI) at Syracuse University has a yearly 3-day convention in which individuals using alternative forms of communication such as FC, AAC, or RPM join together with their supports for talks, practical workshops, panel discussions, exhibitions, and meetings.  It is a place where each person is considered intelligent and competent no matter their diagnosis.  It is a safe place where differences are celebrated and stims such as flapping, pacing, or rocking are welcome. Philip and I were treated to talks by Naoki Higashida, a Japanese Autistic young man who wrote the book The Reason I Jump, Autistic advocate and activist Lydia Brown, and Stephen Kuusisto, a blind professor, author, and poet.  We also attended workshops to improve typing and panel discussions on inclusion in school and community.  Along the way, Philip met Autistic friends Oliver, Daniel, Amy, and others.  Philip had this to write about his first time experience at the conference.

This week I went to the ICI Conference.  I had a nice time.  I am glad I went even if I was scared of the crowds.  Each day I learned to accept autism more.  I learned I am not alone.  On day 1 I met Naoki Higashida.  He is learning from his mentors too about acceptance.  I get his feelings tons each day.  He decided to reach out to other nonverbals.  I am going to try myself to reach out as well.  If reaching out is my calling, I am hearing it loudly.  I picture the meaning of life is learning to accept my autism in the world out there.  I want to mean to really notice like-minded wretches (a reference to the movie Wretches and Jabberers in which the non-speaking Autistic typers refer to themselves as the Wretches) to help them communicate.  I learned to meet others like me is important.  I met Oliver and learned I am not the only one who has difficulty typing.  I am daring to improve by next year.  I am weary of beating up myself because of autism.  I want to be free to be autistic and make a life understanding my very good purpose.

         Taking a rest from the typing workshop.

                                          Meeting Oliver and brother Sam

Letter to the President

Dear Mr. President,

My name is Philip.  I am writing to tell you that I am autistic and I want to change the way autistics are taught.  Time to listen to autistics.  No stopping us now.  Standard of teaching has to change.  There is too much senseless drills.  There are not interesting subjects fostered.  Sometimes I want to learn with normal kids.  I miss autistic classmates who don’t talk.  They can’t be at my school because they can’t communicate.  I need lots of support to spell thoughts.  Not having a voice is hard.  It is hard to be the only non-speaker in my class.  Not talking is geared to nothing.  Not having a chance to learn is cruel.  Please govern fairly.  We need you to protect our right to happiness too.  

I am really lucky to have learned from Soma.  I mean to help other autistics to learn RPM too.  To start RPM you learn to listen to normal lessons.  You learn to spell answers.  Then you learn to notably spell your thoughts.  I lower myself to help others.  Learning is so important for our success.  

                                                                                                           Yours truly,

                                                                                                           Philip Reyes

Lisa’s addendum:

The morning this letter was written, Philip spelled this request:  Will you look at understanding right gears for reaching out to president for registering RPM as academic model for autistics?

Philip has been able to make a breakthrough into full communication by Rapid Prompting Method (RPM) which he learned from its creator Soma Mukhopadhyay at her HALO Clinic in Austin, Texas.  Prior to RPM, Philip received an education based on Applied Behavioral Analysis (ABA) from ages 2-10.  At an early age he  was able to learn the building blocks of learning through ABA, but was only able to functionally make simple requests.  By age 4 he had maxed his capacity to progress in ABA and was stuck learning the same things such as letter and coin recognition year after year.   Philip has expressed his mind was intact all along and he has been soaking up knowledge like a sponge.  However, his inability to speak and to control his body well, made him appear as if he knew very little.  As Philip grew older, this only became more frustrating and lead to more difficult behaviors.  

As Philip  mentioned, RPM is a technique that begins with a regular education and presumes the person is intelligent and competent.  As the person becomes proficient in showing what he or she knows by choosing answers from choices, spelling is introduced, and eventually full communication emerges.  Philip now communicates on a letterboard and ipad (emerging).  He has been able to enter the local public middle school where he attends classes with both autistic (speaking) peers and typical students.  Philip is proud of his accomplishments but is not satisfied with being the only one to benefit.  He thinks often of the classmates he left behind at his old school and those around the world who have no effective means to communicate yet.  He has made it his cause to advocate for them so that they may experience the same benefits he has been so fortunate to receive.    

          Letter to President Part 1

Part 2

Part 3

Part 4