The Reason I Jump, the book, has inspired The Reason I Jump, the documentary. The words of Naoki Higashida provide a kind of narration as the film follows the stories of five autistic young adults around the world, in the UK, Sierra Leona, India and the United States. The film is artistically rendered. It portrays the highly focused sensory experience of autistic people through close camera shots, examining water droplets and movements. It shows the autistic individuals and their families in life, and the overwhelmed emotions of autistic people in their effort to cope with sensory bombardment and frustration. The parents are wonderful. Only one of the autistic individuals is able to speak but his speech is not indicative of his ideas, in my opinion. He gets words out, but I suspect much more is trapped within. The young artist from India expresses herself through her art, but she has not been given a means to communicate through words. Still, she is conquering life through painting her ideas and feelings. The hardest life is in Sierra Leone. There, poverty and old superstitions make having a disability terrible for a family. One brave family started a school for autistic children and the happiness on the faces of the students was lovely to see. Their journey is long, but now they don’t need to be hidden by their families anymore.
The two Americans are able to communicate on letter boards. They learned this skill after years of silence, but they are now able to share their ideas with teachers and family, and they have a lot of feelings. I believe the others depicted in the film would benefit from communicating too. While the sensory system of people with autism is heightened, their need to be seen and heard as a person with ideas is equally high.
I had the opportunity to preview this film, soon to be released. People curious about autism should see it. It assumes competence, looks beyond odd behavior to see human beings struggling to deal with challenges and to cope with their messed up neurology. I was pleased with its honest but respectful portrayal. I send my good wishes to all who appeared in the film and hope this is the beginning of many changes for the silent warriors in this world.
I have been giving lots of interviews recently. Here are two I did together with my mom. For those wondering, I received my questions in advance because my typing, while reasonably fast for one finger, is extremely slow for radio. It would be tedious to listen to me slowly type out my answers.
The hosts graciously accommodated my disability and I typed up my answers and saved them in my iPad. Still, the interviewer heard my answers for the program the first time during our conversation. I Hope you enjoy these interviews and share them with people you think they might help.
Here you can check out our interview on the Special Needs Family Hour and here on In the Author’s Voice.
Recent cool research studies around the world have been looking into eye movement tracking of autistic people as they point to letters to spell or as they read, to see if this gives a clearer indication of their level of understanding and expression of their own ideas. Last week, a significant study done by researchers from the University of Virginia tracking the eye movements of 9 autistic typers was published in Nature Magazine, a respected scientific journal. I suggest you take a look at it. I hope this study prompts many more. The researchers tracked the participant’s fixation on letters that were then used to spell words to indicate the intentionality and the reliability of the communication.
The fact is that the communicative ability of people with autism has to be looked at in creative ways like this because our nervous systems have a tendency to betray us, especially in hostile testing environments with testers who prefer to prove stupidity over intelligence. In autism our bodies easily make us look stupid, but that’s the lazy place for a tester to stop. Stephen Hawking didn’t move like a physics genius. In fact, he didn’t move at all, but because not talking is not the same as not thinking, his mind was lively, and given the means to communicate, he proved himself over and over. I’m grateful to Dr. Jaswal for his research as a first step into a much needed understanding of autism. More research, including longitudinal observation, interviews, happiness measurements (pre and post communication), and motor assessments, will create a fuller picture.
Autism is a motor disability. Talking is motor, looking is motor, pointing is motor. These skills develop gradually and differently for a person with autism. One possible research idea is to see if eye tracking improves in an autistic individual from the first lesson in pointing to communicate over time as their typing skills improve. I am strongly convinced tests would demonstrate progress. Many autistic children have trouble focusing their eyes, they may take in too much or hyper focus on one small item, and learning to look at and scan an array of letters to communicate improves that skill in a purposeful and meaningful way.
I am pleased to see people begin to research in ways that try to find intelligence. There is so much wrong with the angry pseudo-science of those who refuse to even consider the possibility that they might be wrong. It wouldn’t matter if it were merely an academic debate, but real lives are impacted, and that is not merely an academic exercise.