Words from the Parent Panel at Spectrum of Opportunity Conference

Here is another speech from the Spectrum of Opportunity conference at Cal Lutheran University. This is a speech from the parent panel. My good friend’s mother, Barbara Johnson, had the courage to tell her story. Her son was with me in remedial autism class when we were small and no one knew how much was inside. I am happy to say he is at last able to express his thoughts. His story tells parents to not give up, even if your kid has grown to adulthood.

Good afternoon.  My name is Barbara Johnson and I have the
privilege of being the mother of two sons, Chad and Connor Johnson,
both of whom have autism.  My son, Chad, is the focus of my speaking
today however, because he is typing with a keyboard and his IPad
utilizing the Proloquo voice feedback word program for communication
and academics.

I was asked to speak today because Chad basically started typing
meaningful communication and academics at 18 years old. He is now
20.  Chad did began typing earlier with me and with his home therapy
program provided by Verdugo Hills Autism Project using an Alpha
Smart keyboard,  but most of the typing consisted of nouns– usually
what we were having for dinner, or his name, address and phone
number.  He did not progress much from there, because looking back
now I believe we were not emphasizing the typing enough.

Chad had been using PECS most of his time at home and in
school because it seemed to be the only form of communication other
than verbal that appeared to connect with him and what he also
initiated with.  He tried typing and sign language when he was very
young, but these forms of communication at the time did not seem to
register well.  I truly believed they did not make sense to him.

I was informed by the experts, that Chad had severe receptive language
difficulties and that was the reason why he would not always respond
correctly to ABA drills or requests I made of him.  The many books
and articles I researched only backed up this theory.  It was described
to me with the analogy of a radio receiving static, sometimes the
message comes through, and sometimes it doesn’t.  I have never
doubted Chad’s intelligence, and I have always known he is extremely

If only I had realized Chad’s body was not responding to what his
brain was telling him to do, this theory of receptive language problems
would not have shaped how I pursued his education and therapy.
What is so ironic and upsetting is that a great deal of Chad’s learning
had been and continues to be auditory; he has understood everything
all along.  The experts were wrong, I was wrong.

I have dear friends in Tami Barmache and Tracy Kedar who
encouraged me to pursue the typing communication with Chad.  I still
had my doubts because of past experience, but I started to inquire
more.  The pivotal moment for me that changed my perspective was
speaking directly with Ido Kedar.  Chad and Ido have been friends
since they were about 6 years old. They both met in an autism class in
elementary school.   I was talking and crying to Tami and Tracy about
pursuing the typing and I was feeling like I had failed Chad and had him
on the wrong path for years.  Ido approached and typed on a letter
board to me that I was a very good mother to Chad and I had been
given the wrong information, that is was not my fault.  Well, I totally
broke down after that, but it changed things forever for me and for

The meaningful typing initially started at school with the assistance
of Verdugo Hill’s BID, Cheryl Umali and BII, Jim Rodehaver.  Chad
has used the letter board and IPad, but he prefers the IPad because
he can see what he is typing and can also utilize the word bank.  He
required a great deal of support in the beginning, but over time the
support has greatly diminished. Tracy Kedar also worked with Chad using the letter board to teach him to point independently without being touched.  This helped Chad have more ease with the keyboard with less support.  Chad also
receives communication therapy once a week through REACH with
Katie Anawalt and Lindsey Goodrich.

For the first time Chad is fully included in general education in high school.  He is on an alternate curriculum. However, so far he has not had modifications in the academics, only accommodations for his typing and additional time requirements.

Chad was previously in the autism class for almost his entire
education, mainstreaming only for electives or going to a vocational
campus for a job skills program for a couple of periods during the day.
Ever since Chad started the academic general education curriculum
this last August, his writing has greatly improved surprising everyone
around him.

I have tried to encourage other parents to investigate typing for their
children because it has been life changing for our family.  For the first
time, my husband Chris and I are hearing Chad’s voice and his
opinions.  We do not have to guess anymore what he wants, we can
ask him and he can reply.  Many parents have conveyed to me that
Chad, Ido and Dillan are exceptional and their child cannot do the
same.  Every child with autism is exceptional because they are the
bravest souls I have ever met, but Chad, Ido and Dillan are no
different from your children, students, or clients.  Other people with
autism can also be successful using typing communication; they just
have to be exposed to the same opportunities. Most of all, you have to
believe in their intelligence, perceptiveness, understanding of
language, concepts, and emotions. Do not let their physicality get in
the way of you believing in them.

In closing I am going to read something Chad wrote in his government
class that I believe says it all.

A cause that is very important that I think of is the rights of people
without voices.  I have autism and I don’t talk.  That makes it hard for
people to know I can think and learn.  So I and other do not get true
education.  We cannot help ourselves to speak up.  But we
deserve a fair chance to learn real knowledge.

3 responses to “Words from the Parent Panel at Spectrum of Opportunity Conference

  1. Thank you for your bravery to share your story. It’s amazing how similar your story is to those of many across the country who are breaking out of the chains of the myths and behavioral mindsets which limit the potential of so many with autism-related movement differences!!

    Consider joining us for the 2016 Rethinking Autism Conference in Indiana and hear the research that overwhelmingly supports the need for us to change the way we diagnose, educate, and support individuals on the spectrum. Join the movement to #rethinkautism! autism.optimalrhythms.org

  2. Hi. Im from israel, I very much interesting to learn how to help to people with autisem and c.p to communicate!

    how or where can i learn this typing communication?
    also i read the book” ido un autisemland” and wonder about if there is translation in hebraw..

    • Hi Ofra,
      The translation is being worked on. There are people in Israel who teach typing to people with autism. Yoram Bonneh from the University of Haifa may know about who is doing that.

Leave a Reply

Your email address will not be published. Required fields are marked *