Biomedical Autism Treatment

By Philip

(This essay was prompted by a Classmate's question:  Are there treatments to help stop autism?)

I do not believe in a cure for my autism. People seem to try anything to cure autism. Please don't treat us as medical experiments to have tests on. I am all for normal uses of medicine like vaccines and antibiotics for diseases. The access to doctors should be the same for Autistics. We are normal when it comes to health matters. We can have the same illnesses as neurotypicals.  My experience was going to a DAN doctor (a specialized doctor trained in using the "Defeat Autism Now!" protocol). I had to be assumed to have a disease. I made my autism an enemy. Being autistic found me with no peace. Me and my family made changes in my diet.  I was made to try many nonsense treatments that did nothing for me. Chelation slacked my muscles. Lollipops had the same effect on my autism as me going on each supplement the DAN doctor prescribed. Talking about it now makes me angry about all the capricious stuff I am analyzing. (When asked what he meant by "capricious," Philip elaborated: I meant you were always looking for different things to cure.)

I am teaching you about treatment fads so you can go make sane decisions. An informed parent should not make decisions out of beautiful promises of cure. Instead they should teach us to communicate so we can make our voices heard. My saving method of communication was Rapid Prompting Method. You follow a helper's lead to give you a regular education and communicate by prompting you to keep moving with your responses instead of stimming. No other method has so impacted my life. No peace came before this road to communication was found. Life began for me finally.  You can no longer fad treat me because I can tell if I want to be treated. 

Montgomery County's "Real Boys" by Guest Blogger Jack Allnutt

The Real Boys

In 2013, Montgomery County Schools in Maryland approved a pilot program for 5 non verbal boys with autism.  After a full year of meetings and intense advocating on behalf of the parents, the "Real Boys" entered general education classes with a 1:1 aide to help them facilitate communication through typing. All 5 have succeeded and flourished in mainstream classes. By presuming their competence, Montgomery County has forever changed the course of these boys lives.

Jack Allnutt is one of the Real Boys. He is 13 years old and started typing to communicate in November 2012 after being "locked in his silent prison" for 10 years.  Since being mainstreamed, Jack has made Honor Roll every semester. 

By Jack Allnutt

I came casted as a mute farther behind everyone in worldly directions.

Answering eagerly to fast calculus problems that were in my head yet, just seated tiresomely for hours reviewing simple numbers. Rewarded with labeled autistic behavior. How would autism always permanently determine learning when limitless populations of teachers don’t realize our great capacity for knowledge? I peered into windows around school and saw my schoolmates learning history and math and science.  I hoped real education would find a place for me one day answering my prayers.  

Having real classroom learning isn’t foreign to me and the Real Boys anymore. Now I attend Lakelands Middle School and I’m dealing quite well.  Teach subjects I never thought I would know and excelling.  Can’t claim all autistics can type but it has left me free from my apparently silent autism prison. Am too happy people see me as intelligent.

A Parent's Question on Reading and Screen Time

Mom N writes:

Hi Philip. I have a 3 yr. old cute autistic daughter. She is doing ABA, PT, ST and OT since one year. She has low muscle tone and hyper mobility. These are medical terms her therapists use. But to me she is a happy, active loving angel daughter. I came across RPM recently and have been following yours, Emma Zurcher Long's and Ido's blogs. How can I start RPM for my little one at home is my question to you. Now a days she keeps on asking (not verbally but grabbing my hand and taking me to either TV or iPad) for cartoons. She was interested in books before. But now she doesn't spend much time with it. How can I reduce her screen time and introduce other activities. Thanks for reading this and eagerly waiting for your answer. Your blog has changed my family and friends a lot. Thanks for being out there for us. God bless you

Philip writes back:

To N, I am happy to answer you. I am pretty sure your daughter wants to listen to you. Keep reading to her. No one really wants to be alone. You can help your daughter reduce screen time by deciding not to let her watch TV. I do not really like TV that much except for watching soccer and basketball. TV makes my ears feel overwhelmed. No one meets so much sound in nature. I like soft volumes better. I prefer people's talk and conversation to TV. I think kids can get addicted to TV out of lack of better things to do. Understanding the world is best through interaction with it. Practice doing things with your daughter instead of watching TV. Putting book reading before TV is better because it deems people look at the story together. I think people eagerly are looking for promises of commitment from people to have someone to share their lives with. I think being available to your daughter is important. Kids at age 3 like being taught about love and mini lessons on God. I feel best when I am peacefully praying with mom or dad. Parents are my closest relationships because they are patient. Mom is devoted to me most.  She never gives up on me even when I am petulant and difficult. I need lots of understanding to do my best in life. Peace to you and your daughter. Philip

Lisa adds:

Hi N, 

The description you give of your daughter sounds so similar to Philip at that age (and somewhat even to this day)!  I think the number one thing you can do is assume your daughter has the intelligence of a neurotypical 3 year old (and perhaps higher) and also that she longs for interpersonal interaction.  It will not seem evident by her outer appearance, but look past it and remind yourself that the outer does not necessarily reflect her thoughts and what is going on inwardly.  When Philip was younger, if he was not still while I was reading, and was instead jumping on the bed or pacing around in the room, I thought he was not listening and I would stop reading.  I now know better that movement does not mean he has stopped hearing.  It may even be helping him engage in the story more.  The times you spend in active engagement with your daughter will be very meaningful for the both of you, as long as you understand that it may not look like a "typical" interaction.  To see what typical 3 year old milestones are, you can search the internet.  Modify these milestones if your daughter can't meet them in the typical fashion (like speaking a number of words).  You can begin simple lessons in what a 3 year old should know in an RPM style starting by giving written choices or word identification.  Beginning to teach literacy skills (thus the importance of reading) will be key to succeeding in RPM.  I think some screen time is ok, but put the subtitles on, so that she can be learning the written words as well.  If you have the opportunity to attend a nearby RPM workshop, I would encourage it.  You can go as an observer (in many cases the observation fee is quite low) or enroll your daughter in the 1:1 sessions, depending on whether the provider accepts kids as young as 3.  You can also search this blog in the pages section to find videos and other resources to help you get started.  I wish you and your daughter all the best!  -Lisa   

Philip around age 3 and his sister

Guest Blog by Christopher Finnes

Christopher and his "Nan"

Today's post was written by 16 year old Christopher Finnes from the UK.  He and his mother Sue have been of great support to Philip and me personally.  Many in the RPM Community know them by their work through the Facebook group Unlocking Voices- Using RPM and the Unlocking Voices Community Interest Company in the UK, both started by Sue to provide practical help for parents wanting to help their children implement RPM to learn and communicate. 

ATTUNE TO ME
by Christopher Finnes

PLAY WITH ME AND YOU WILL SEE,
THE BOY THAT IS INSIDE OF ME.
HE IS SMART, HE IS CLEVER,
HE TRIES TO KEEP IT TOGETHER.
ATTUNE TO ME AND YOU WILL SEE,
THE PERSON THAT IS INSIDE OF ME.
HE IS TRUSTWORTHY AND KIND,
WITH NOT A BAD MIND,
HE IS OFTEN THOUGHT OF AS DUMB,
BUT HE DOESN’T GET GLUM.
ATTUNE TO ME AND YOU WILL SEE,
THE INTELLIGENCE INSIDE OF ME.
HE IS HELPFUL, HE IS RESPECTFUL,
HE REALLY IS WONDERFUL.
ATTUNE TO ME AND THAT IS THE KEY,
IN UNDERSTANDING THE AUTISM IS DIFFERENT TO ME.
YOU WILL SEE THE MAN I AM TRYING TO BE,
IF YOU TAKE YOUR TIME WITH ME.
ATTUNE TO ME TO FIND THE REAL ME.


A TRIBUTE TO MY NAN (Read at her funeral April 2015)

MY NAN WAS THE KINDEST PERSON YOU COULD EVER MEET

SHE WOULD ALWAYS BRING A SMILE TO PEOPLE’S FACES AND BRIGHTEN UP PEOPLE’S DAYS

YOU COULDN’T MEET A NICER PERSON WHO HAD SO MANY GIFTS TO SHARE WITH US ALL

ONE OF HER GIFTS WAS TELLING TERRIFIC STORIES

SHE WOULD TRY TO HELP ME EVEN THOUGH I CAN BE HARD WORK

SHE ALWAYS TRIED TO HELP AND IT MEANT SO MUCH TO ME

I WILL MISS HER KIND SPIRIT SO MUCH BUT MOST OF ALL I WILL SMILE AT ALL THE MEMORIES AND SHE WILL LIVE ON IN MY HEART FOREVER

Christopher has been doing RPM since 2009.  He is improving every year and is currently working on increasing his independence through learning to hold his own letterboard as well as typing on a keyboard.  He enjoys running and horseback riding.  Chris had a very close relationship with his Grandma "Nan" who always loved and accepted him unconditionally.  RPM has allowed Chris to have many wonderful conversations with her and others.  

Classmate's Question on Types of Autism

How many different types of autism are there?

I think there are different autisms. People call it a spectrum.  Teachers make accommodations according to our individual needs. Some autistics think in pictures like Temple Grandin. Some, like me, think in letters and words. Some autistics can talk. Others cannot. Some autistics can coordinate their movement well. Some cannot. I have a hard time with talking and movement. I have a hard time moving purposely. I pace a lot to make my body calm. Saving my manpower for meaningful tasks takes lots of concentration. People may do things differently but we all think, love, and want to be loved. Let’s try persuading lots of people that autistics are really smart and friendly. I want you to accept me just like anyone else.

_______

I asked Philip to explain why he calls himself “Autistic” rather than using the term “having autism.”

I call myself Autistic because no one can take autism out of me. It is a part of me just like my heart is. I was born this way and can't be made to be neurotypical even if I wanted to.

Philip at his Christian Service Brigade Awards Night