August 20th, 2011
Dear Friends and Family,
Thank you for visiting the Descartes Institute website. As
the founders of the Cure Autism Now foundation and after many years as
advocates for autism research, my husband Jon Shestack and I have felt we now
need to focus our attention on: "Nonverbal Autism: The Forgotten Half of
the Spectrum" (see attached article for more information). These are the individuals who are often called “low
functioning” and cannot speak, who have been left behind in spite of the
tremendous gains made over the past decade in autism awareness, research and
education. Our son Dov is one of them.
As many of you know, our son Dov, who is now 19 years old,
is nonverbal and didn’t begin to communicate until he was 9 years old. This
unexpected miracle left us with an even greater sense of obligation to speak
out for those who truly have no voice; the most severely impacted half of the
autism population who have profound challenges in communication and behavior
and often many medical issues as well. For many years it was thought that all
nonverbal people with autism were mentally retarded, untreatable, un-educable
and basically hopeless.
When Dov astounded us all by beginning to communicate
through pointing and eventually typing and using a keyboard, we had to rethink
everything we had been told and everything we thought we knew about our son. As
it turned out, in spite of his autistic behaviors and great difficulty in
communicating, Dov has good cognitive ability. He has been able to receive an
education and expand his social and emotional world and although the very act
of typing remains a tremendous struggle for him - to be able to communicate and
have people understand that he is an intelligent, sensitive person, is worth
all the frustration in the world.
Dov’s grandfather, Jerry Shestack was always incredibly kind
and loving to Dov and sensitive to Dov’s struggles in life. He made him feel
welcome and loved, read to him and gave him many books over the years. When Dov
finally became a Bar Mitzvah (see this amazing video!) after studying for 4 years, we were all blessed
when Jerry could be there with us to celebrate Dov’s amazing achievement. We
will all miss Jerry terribly and he will be remembered by many for his life of
awe-inspiring achievements, but for us, there is none more meaningful than his
role as grandfather, his unwavering kindness, patience and love for our son
The Descartes Institute is a non-profit organization that we
created to advocate for those with nonverbal autism. The Descartes Community
website is perhaps the only place for people to go where they are allowed to
have hope for their nonverbal child, hope for a better future, for improved
quality of life, increased communication, a better education and help from
others who are on the same journey and will not give up.
In promoting the mission of the Descartes Institute I have
traveled around the world giving presentations on how to get nonverbal children
and adults started communicating, advocating for their right to an education
and arguing that lack of the ability to communicate does not prove lack of
intelligence, but rather the inability to express it. I have written a manual
to assist in teaching nonverbal people to communicate, which is free on the
website. I currently serve as an Advisory Council member for the National Institute
of Mental Health, where I continue to advocate for research focused on
Thank you from Jon and myself and from all the families, the
teachers, the therapists and caretakers who want a better life for someone they
love who is nonverbal with autism. Thank you for caring and for believing in us
and our children and thank you for your much needed support as we blaze the way
toward a better future for the forgotten half of the autism spectrum.
Click here to visit "Remembering Jerry Shestack" an archive of the many wonderful tributes written about him by his friends, colleagues and family members, as well as obituaries that have appeared in the New York Times, Philadelphia Inquirer and other publications.
- Portia Iversen
Please check back as we continue to develop this website,
we’ll be adding new materials soon.