Category Archives: autism

From 2012, my Speech, “Imagine Having Autism”

Here is an eleven year old post that I wrote when I was fourteen years old.

From My Speech, "Imagine Having Autism"

*A happy  footnote is that I now know of three of my former classmates from elementary school who are now fluently typing to communicate. I hope there are even more.

Another Blast from the Past- A Challenge to Autism professionals

This post, from 2014, remains one of my most viewed.

A Challenge to Autism Professionals

Blast from the Past: The Hope Fulfiller (2011)

Each week I will be sharing an old post of mine. This one addresses spiritual issues and autism.

 

Ido in Autismland is now also an audiobook

Happy to announce that Ido in Autismland is at last available as an audiobook.

Blast from the Past, A Speech I Delivered in 2015

I am introducing a new feature to my blog. I will regularly be posting some of my greatest hits from years past.

Here is a speech I delivered at a conference in 2015.

I believe it is time to look at severe autism in a new way. The theories that determine treatment for young children are based on long held beliefs that autism is a processing problem of language and conceptual thinking.According to some theories we cannot recognize emotions, we cannot visually distinguish relatives and friends from other faces, or know right from wrong. Some have even declared that we even cannot recognize a human being from an object.That’s pretty bad, huh.

Is this iPad living, or an object? Maybe incessant drills on flashcards will clear that up. Perhaps I have been introduced to all of you by an object, not a person. How can I tell that a person is not a machine? The same way that all of you can tell.

I guess the solution for decades has been flashcard drills to drill on nouns, verbs, people’s names, commands, and on and on. It is a familiar start in life for a lot of us. But why should I be drilled on what I already know as well as everyone else? From my point of view, it’s a pretty insulting premise.

To base a person’s education on these assumptions is risky because a boring day of ‘what is the weather?’ drills, or touch your nose lessons, does not teach what one needs to learn. I suppose if people really don’t understand, or cannot recognize the difference between mom and dad, or mom and a table, these common methods might help.

But autism is not that disorder.

The autism I have is not a language processing problem or a lack of understanding anything. I want this point crystal clear. My mind is fully, totally intact. In fact, my experience is that most nonverbal autistic people have intact minds too.

Here is your challenge. Stop looking at our weird movements, blank faces, lack of speech, trouble handwriting, poor self control, and on and on, as proof of intellectual delay. It may look like it, but I think looks here deceive. Believe me when I tell you that if I could look normal on the outside I would do it immediately. I am normal on the inside.

That’s different than what people with Asperger’s say, or what Temple Grandin writes in her books. But that’s because Asperger’s Syndrome in severe form is not what I have.

I hope that’s clear because it confuses many professionals. Different neurological problems have the same DSM diagnosis. That’s confusing. I think it would be like putting AIDS and head colds under the same heading because they’re both viruses. Too much is covered under the heading, Autism Spectrum Disorder, and this misleads an understanding of what I have.

So now, let me tell you what I have. Autism for me is a severe problem.

How would you like it if your thoughts didn’t reach your body consistently? What I mean is that your thoughts are intact but internally neurological forces block them from your motor system so that messages get messed up, or ignored, or occasionally they get through. That can resemble not understanding, but it is not.

Nevertheless, the person cannot necessarily demonstrate intact thinking due to the motor issues that block speaking, handwriting, gestures, facial expressions, initiating actions, and more. So, smart intact people may spend years, or even their whole lives, in a body that traps them behind weird movements and unreliable, inconsistent responses. More than that, neurological forces may affect the sensory system, making sounds too loud or visual stimulation overwhelming. The frustration is compounded by autism experts who dumb down learning because of their belief that autism is a language processing problem.

When I was young I did ABA. No offense to any ABA people here, but for me it was a horrid experience. I found those early years of drills and reinforcements an exercise in boredom because I already knew the vocabulary they taught. I just had unreliable hands to point to the flashcards accurately. The baby talk, and most frustrating, the supervision sessions that never worked on my real challenges, made me feel frustrated and angry. Worse, the theories probably delayed my mom’s ability to recognize my true potential by several years, at least.

No offense to any Floortime people here, but I never got much out of my sessions because my play was so delayed when I was small. I craved more than the games I got. But my Floortime was minimal. I was drowning in ABA drills instead.

No offense to OT people here, but what I desperately needed was motor control and physical fitness, and I never got that. I got swings that spun me. Once until I barfed.

No offense to special ed teachers, but when I couldn’t show my intelligence, I still was thinking. But all I got was one plus one, ABC and the weather. My recommendation is to teach at least some age appropriate lessons and books, even before the student can express his thoughts. Who knows how much is locked inside?

My helpers were kind and well meaning, but the way I was taught missed my real needs for communication and motor control simply because the methods assumed I did not understand spoken language and therefore needed a rudimentary lifestyle.

What helped? Soma did. She gave me the ability to type on a letter board when I was seven through her method, Rapid Prompt Method, or RPM. This has progressed to a keyboard and ipad. Because of this, I am a general education student, college bound, on the high honor roll in AP classes and even learning a foreign language. I work out with a trainer and I hike and run and row on a machine at home. I also took piano lessons. These things helped me.

To all the professionals I offended earlier, sorry. I admire your devotion, compassion and caring. I challenge you to see your nonverbal autistic students differently and with high expectations for learning.

Parents, don’t give up hope. If you see intelligence, even if brief, then intelligence is there. It’s most likely inconsistent because of those frustrating neurological forces I mentioned.

Communication is a blessing. Lack of communication is a curse. Let’s give kids the blessing of communication and a real hope for tomorrow.

Thank you.

Autism and Occupational Therapy

I wanted to share my latest interview. called The Power of Presuming Competence. This is a podcast specifically targeting occupational therapists but should have useful insights for other professionals, parents and anyone who is interested in an insider’s point-of-view autism.

Recent Interviews

Please check out my latest interviews!

Here is a literary discussion about my two books and more on Deborah Kalb’s book blog.

Here is an interview on the podcast, Walking with Freya, in which I discuss my books and what I have been up to, and finally my interview on All Autism Talk podcast, in which I discuss my writing and autism advocacy.

And here is a link to this Sunday’s Houston Chronicle in which I, and my work, are profiled!

Film Review: The Reason I Jump

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.

Two Recent Radio Interviews in which I Discuss my Journey, my Writing and Autism

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.

Important New Autism Research Study on Eye Movement and Communication

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.