Category Archives: sensory processing

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.

Musical Neurological Mysteries

I have been listening a lot to Beethoven recently. My passion for different composers goes through phases. I have had a Bach phase, a Gershwin phase, a Prokofiev phase. I love their distinct styles and utter genius and originality. Each one was a profoundly transformative composer who also created incredibly poignant and beautiful music. Because I have synesthesia, I hear and see my music. To be honest, some music is visually beautiful and some is harsh and hideous to me. Beethoven has music that is like a visual poem. His melodies are like flowing waves of lights when they come together perfectly.

Neurologists might want to ponder the mystery of Beethoven a bit. For a huge portion of his composing career he was either losing his hearing or was totally deaf. How did his brain do the things it did missing a sense- the essential sense it required? I have been learning a bit about art history recently too. Can you imagine a genius like Van Gogh painting blind, remembering how to paint somehow? My mind cannot comprehend how Beethoven wrote his music, orchestrated it, created mood, emotion and phrasing- and all without hearing it. Even an experienced chef likes to taste their food.

The human brain is a mystery. Beethoven wrote some of the most sublime music ever written and he did it as a non-hearing person. Generally that would end a musical career, but he had inner music. He remembered sounds from when he heard. Did he hear them in his head the way we do? Who knows? But we do know he was able to tap into this ability somehow.

I tend to turn subjects back to autism. We don’t understand the brain well. By any logic, a deaf man should not be considered one of the world’s greatest composers. But he is. So once again I caution experts to have a little humility and not presume to think they have a clue about how a nonspeaking autistic person perceives and understands. The brain has so many unknowns, and people who by logic shouldn’t have an ability may have it, and sometimes at a profound level. I shouldn’t be processing human speech, according to some. I shouldn’t be writing my thoughts. I shouldn’t even have thoughts. Well, I say, go listen to Beethoven’s Ninth Symphony and imagine writing it deaf and try to be a little humble about the brain’s unknown capacities.

A Taste of Sensory Bombardment

Here is a PSA that is trying to give a taste of sensory overload in autism. It is very hard to depict but it does give a hint of what it is like when too much information is coming in at once.

Sensory Processing Issues in Autism

In autism so many things are our of whack it’s a pretty full-time job just making it through the day. I’ve described the motor problems, especially between mind and body. Now I’d like to address some issues related to sensory processing.

We have the major senses of sight, hearing and touch. I love taste and smell, but obviously they are not the primary senses. Soma includes kinesthesia, or movement, as a kind of sense. It includes body awareness. Normal sensory processing is generalized, meaning it is adaptable and can cope in a variety of contexts. It is what you do automatically. For example, if you converse in a noisy room you automatically tune out the background din, but a person whose auditory processing is global is blasted equally by all sounds. Then processing become overload. On the other hand, a person who micro processes might get locked into tuning  into the same sounds over and over. Sometimes people who are overloaded due to global processing  may try to cope by obsessively listening to micro-selective, familiar tunes.

The same applies to sight. You focus near, far, or on what’s necessary while ignoring non critical sights. The TV program, Brain Games, showed how normal brains are fooled easily in visual processing. We call it optical illusions, but it’s really proof of our processing selectivity. In fact, our brain is selective to protect us from overload. But when our brains can’t control the overload, which can happen with autism, we can be overwhelmed or scattered in perception or alternatively, we can pick a minute visual target to distract and comfort us. I am guessing you know people who have watched the same movie or cartoon thousands of times to cope with sensory overload, though it may be beyond boring.

I do believe these skills improve with practice. Mine have  very much, but it is a lot of work to change this kind of neurological pattern. However, I have hope in neurological plasticity and in the determination to improve.

My Speech at the Profectum Conference

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.

www.profectum.org

Professional Guessing

I read this story in the Wall Street Journal.
and it probably describes feelings that other parents can relate to. The boy has very different symptoms from me so of course his story is different too, but I see how hard parents work on dealing with behaviors they don’t understand. I see how they seek answers from experts.

The part of the article I want to comment on is what the autism specialist told the father about his son. The insight the father received is interesting. He is told that his son perceives the world in fragments. In my opinion, the expert is giving an insight based on conjecture. How is she able to determine that the boy is perceiving reality in fragments? I don’t perceive in fragments, though my sensory system isn’t normal. I think autism has a lot of experts who guess a lot.

I am thinking that maybe I don’t have a title, but I am an expert in autism. I could tell the expert the struggle of autism from my own experience. I didn’t read textbooks in autism to help me tell others what autism is. I live autism. I see the world in autistic eyes. I have had so many theories all my life that severely impacted my life. I would say that many were totally fantasy.
I hope soon I can publish my book and tell about autism from the inside out.