Improving My Way

By Philip

I am peaceful today because people are treating me a lot differently than they used to. Today I went bowling with my friend Max. I was happy because Max's dad made conversation with me and made me feel I am important. He said I helped him see Max in a new light. I am doing my best to make a difference. I am pleased when I can see how I have helped.

I have heard of an interesting idea called Neurodiversity. I think it should be the new way of seeing autism. Neurodiversity is the idea that autistics have a different neurology and shouldn't be expected to become a person with a neurotypical neurology. No one can be cured of autism. Therefore we should stop making cure a goal. Instead let's try to accommodate our difficulties in communication. To continue to use therapies that don't respect our neurology such as ABA is like trying to beat a dead horse. They don't allow us to grow how a person should. Peace comes when I can see meaningful changes in my life. This year I have been able to join regular classes at school. I am proud to be able to attend because last year I couldn't because of my behaviors. Now I can handle myself much better. I love learning new and interesting things. I also can do things without as much anxiety as I used to have. I can go to crowded arenas, meet new people, and try new activities like biking and ice skating. I am still autistic 100%. But I am making progress like a human being should.

Copyright 2015 Philip Reyes.  All rights reserved.

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.

The Mental Map- Part 3: Affect

Affect is the third part of our mental map.  In every situation we encounter, we experience feelings and emotions associated with it.  These feelings affect our behavior.  A visit to a new city can be met with different emotions that affect our behavior in different ways.  If we were planning a trip to that city to see the sites, we will be excited and anticipatory.  We may be looking around with wonderment, snapping pictures, and frequenting the souvenir shops.  If we go to that same city, but by mistake because we got lost on our way to another destination, we would have different feelings, perhaps fear, annoyance, or anger.  Our behavior would be much different.  We’d be trying our best to get out of there by looking at a map or gps, asking for directions, or wandering around arguing with one another.

Today, was a particularly good day to discuss affect with Philip.  As always, Philip gave me permission to blog about it.  Philip’s school note came home saying Philip did very well in his classroom, but had to be taken out of music and lunch because he got upset.  Music and lunch are two periods he spends with the “normal” kids.  

I began by reviewing the lesson on affect from Soma’s book and Philip freely brought up his feelings about transitioning to his new school.

Philip, what is affect? (Philip’s answers in bold)

It is an emotion.

How does this relate to what you are going through?

I have strong emotions.  I am meeting kids who do not struggle with autism like me.  I have a hard time each day accepting my autism.  One day I hope to be more normal.  I want to be able to talk and make friends easily.  I’m timid around normal kids.  Today I had a meltdown each time I was around them.  I was anxious because the idea of them teasing me terrified me.  I very deemed myself to escape the situation to avoid attack of emotions.  When I had the meltdown I felt ashamed.  Before I went to (my school) I was not expected to know anything.  It was easy to address each day whether or not I was expected to fit in.  There was pressure from no one to fit in.  At (my school) I am looked at as smart each day.  I am expected to ade (aid) myself at trying to make friends with normal kids.  I am having a hard time doing it.  I am attracted to kids with autism too.  They are easier to be with.  I am too tedious to deal with.  I understand I am difficult and I want to get a lot attained.  I want to get a good education, teach about autism, make friends with normal and autistic kids, and reach notable status.  I want to advance at (my school) because the teachers at (my school) go to great lengths to not get mad at me.  They listen to me.  They don’t let my behaviors stop them from teaching me.  I like to spell personally with them.  I readily spell with them because they think I am smart.  I want them to help me make friends by piecing a plan for me to purposely talk to them.  I want so much to be included.  I need to stop having meltdowns.  I will try to think each day about silly thoughts so I too can relax.  I am turning into a student who can problem solve.  I like our format of learning at home.  Each day I am understanding myself and the world a lot better.  It is medicine to learn to accept no limit to what you can go to. 

 At Leaps and Bounce for Cousin Tommy's 4th Birthday- 3/8/14

      

The Mental Map- Part 2: Expectancy

According to Soma’s book Understanding Autism through RPM, expectancy is one’s self-assessment of his or her own ability to put into action the expected task or behavior in a particular environment.  For example, if we were to eat at a pricey, high end restaurant, we would be expected to dress a little nicer than if we were going to McDonald’s, use our best table manners, order a glass of wine or cocktail, and leave a good tip.  As neurotypical adults we can easily transfer this set of expected behaviors whether we are in a nice restaurant in New York or in Paris. 

I asked Philip how he would describe expectancy. (Philip's answers in bold)

It is wanting to do something the same but in a new situation.  

Philip, as well as many autistic children, have a hard time easily transferring skills from one setting to another.  At home Philip is able to spell complete thoughts in sentences and paragraphs.  At his new school, where he has been for only 2 weeks, he can produce one word or short phrase responses with his teachers.  With most people whom he has no experience spelling with, he often cannot produce a correct spelling.   It seems the difference is the amount of experience Philip has with each spelling partner.  I asked Philip why there is this difficulty in generalization.

It is hard because there are new things to process.  Each day the different voices have to get my attention.  I have a hard time with each letter at a time.

What do you mean by that?

I think fast but I have to write slow.  I have to concentrate to get my finger to obey my brain.  When I am pointing to letters I am slowing my thinking down.  It is each day tiring to slow down.  I am having to pester my brain to stop running wild.  My brain thinks of everything all at once.  (Can you give an example?)  It verses stories of Abe Lincoln and (thinking of) not needing to stim so much, and (thoughts of) today’s events.  I am lucky to have someone slow me down enough to think and communicate clearly.  

How does a person help you?

The person needs to compete with my desire to stim.  They need to be so patient and persistent.  They need to be strong with me.  (How do you mean?)  They can’t give up.  They have to see me as smart.  They have to welcome me with open minds.  They have to support me.  You are the best.

How can we help you in a new situation?

It helps to talk about the new situation before it happens.             

 Philip gets award for best designed car!

 

Pinewood Derby Race at Randall- March 7, 2014

The Mental Map- Part 1: Encoding

Philip and I have reached Chapter 8 in Soma’s book Understanding Autism through RPM.  We will go through the 6 factors (1 per day) that piece together to form one’s mental map.

“Philip, what is a mental map?” (Philip's answers in bold)

 It is each person’s way of interpreting the environment.

What is it based on?

Neural pathways and brain function.

What does the mental map influence?

Behavior

The first factor that comprises the mental map is encoding.  It is the process of interpreting the objective stimuli that we sense in the physical space and situation we are in.  In autism, the sensory channels may detect the environment in a number of different ways.  For example, a person with global hearing may hear things as one big sound in which the sound of people’s voices in the room, the hum of the refrigerator, and noise from the TV all blend as one.  A person with selective vision may only look at a detail such as things that are red over everything else.  Generalized hearing and vision is when a person can take in the whole environment while being able to distinguish the details, attending to what is necessary and filtering out the extraneous.  I asked Philip how he encodes a new environment.

I see a new place as interesting.  I am like an explorer.  It sometimes opens me to trouble.  I hear things at one sound.  It is sometimes distracting from hearing one thing.  I have a hard time so near loud sounds.  I use my hearing the most.  I place sounds in my head into categories.  I try to filter out the unimportant ones.  This takes a lot of energy.  I can take some sounds out now.  It helps to not be too loud.  I hear conversation well.  I am always attending tons to words.  I like hearing talking.  I each day open my ears to education.  

What about your vision?

I see the whole picture and details equally.  I am not too addressed by visual stimuli.  It is doing me ok for education.  I listen well and watch my words.  I am happy with RPM.  It uses my strength in hearing.

 

Walking around New York City for the first time April 2013