My 17-year-old son, Ido, is on a mission to change the world for people with severe autism. He is a tireless advocate, blogger, frequent presenter at universities and autism conferences, and the author of a book about autism which has even been assigned in graduate level university classes.
As Ido writes in the introduction to his blog, “I am an autistic guy with a message. I spent the first half of my life completely trapped in silence. The second, on becoming a free soul. I had to fight to get an education. Now I am a regular education student. I communicate by typing on an iPad or a letter board. My book, Ido in Autismland: Climbing Out of Autism’s Silent Prison, is an autism diary, telling the story of my symptoms, education, and journey into communication. I hope to help other autistic people find a way out of their silence too.”
Ido seeks to educate the professionals in the autism field to understand severe, nonverbal autism better and to provide children with a richer, more appropriate education and a true means to communication. He has become a source of hope for parents of children with autism and for people with autism as well. As a family, it has been a remarkable journey of triumph over challenges, even as Ido works daily to face new goals and struggles.
Kveller asked that I interview Ido about his life living with autism. His answers were all typed letter by letter on a keyboard.
What is severe autism?
Autism is a neurological condition that is called a spectrum disorder. I have severe autism which means I can’t speak and I have really challenging motor control problems. It doesn’t mean I have cognitive delay, or no empathy, or no interest in people, but these are common beliefs. The term “spectrum disorder” may be confusing because I think we are actually looking at different neurological conditions, not degrees of the same condition. After all, colds and AIDS are both viruses but no one refers to a Virus Spectrum Disorder.
Many people assume that people with severe autism can’t understand language or have a severe learning disability. Is this correct?
Not for me, and not for many other people. We are trapped in bodies that don’t obey our minds, so without instruction that teaches us to type or use a letter board we stay locked internally. I type on an iPad or letter board to express my ideas. My teacher was an innovator named Soma Mukhopadhyay, who developed a method that taught nonverbal people to type.
How would you like others to talk to you?
Normally, because I don’t need baby talk, simplified speech, or “high fives.” My outside is not a reflection of my mind. I go to a regular high school and do regular school work and will graduate next year and go to college. You wouldn’t speak to other high school juniors in baby talk, so I ask to be spoken to in the same way. Many parents have written to me that after reading my book they started speaking normally to their nonverbal kids and the kids are doing much better.
I wrote my book to change the way nonverbal autism is understood. There are lots of smart, trapped people who don’t have the means to show their intelligence yet and they receive the most boring, rudimentary education imaginable. I did, too, and I escaped because I was finally taught how to type my thoughts.
I felt a moral obligation to help people who were not yet learning how to communicate, or were not receiving a real education because they were assumed to be receptive language impaired. I figured the best autism expert was me because I have autism, not the many experts who had studied theories but were so often really wrong about me. I hope time will change things because it is time to change things.
Can you describe a typical day in your life?
I go to high school and take all the usual required classes like US History, English Literature, Chemistry, etc. My school has a small farm because it has a magnet school for veterinary and agricultural studies which I am in, so I take care of animals too. My favorite is the beautiful horse.
I have tons of homework. I blog and give speeches. I work out, too.
What are your dreams for the future?
I hope to get a degree in college that helps me become a new type of autism educator. I hope to educate the professionals.
What is your advice for parents of a child with severe autism?
Look for intelligence. If you see it, it is there, even if the kid can’t show it always. Talk normally. Give rules. Don’t let autism rule your home. Teach normal things. Read my book or books by others with nonverbal autism. Find a community to support you.
Was there something you wished I did differently when you were growing up?
I wish you had trusted your instincts more and listened to experts less. I would have been free sooner.
What was something we did that you found most helpful in dealing with your autism?
The best thing was that you found out I was smart and gave me a future. I can’t ask for more, Mom.
Get Ido’s book Ido in Autismland