Paving the Path by guest blogger, Dillan Barmache

Dillan and Ido

Dillan and Ido

Ido has been a figure of importance for those of us on a journey to find our voices. I have known him a long time, and he has given me advice, hope and footsteps to follow in my time as a communicator. I don’t know if I would have had the same success now that I have achieved in my struggle against silence without him to forge a path before us. I would like to think I could have, and I wonder how much it must have been so frightening to make those paths without his own guide ahead. Ido gave me a lot when he had so many of his own trials to face. We all have to fight so hard to beat autism, a school system that doesn’t know what to do with us, and expert behaviorists who denounce our accomplishments as a hoax. Ido still found it in himself to take the time to help me in this struggle, and he even wrote to me in his book. I hope a younger version of me can look at my story and I can do for him what Ido has done for me.

The process of bringing true education to people with autism is as complex as the condition itself. In my school, Ido was first down that road, and I was able to look at his experience and know the challenges ahead and what mistakes to avoid. And further down the road, the next student will be able to refine the process. We keep building and learning how to learn. There will never be a perfect way, and that is good. Always adapting is the perfect way, and Ido began that all in my school. It is most important to be open to knowing that there are undiscovered modes of learning. Already many teachers are fixed in their ways and unwilling to admit to a need for change. Our presence in the classroom will show them an example they cannot ignore. I am grateful to Ido for being the first of hopefully many.

Motor Difficulties in Severe Autism

Last year I was asked by two neuro-researchers to describe my mind/motor problems to be part of a scholarly research paper they were publishing in a neurology journal. My personal experiences helped support their clinical findings. In other words, their data was validated by my life experiences. Unfortunately, papers get rejected all the time in scientific journals. I believe and hope their findings will still be published, however my essay will not be included as the editors determined that what I wrote was too personal and unscientific for their venue (meaning not research based). This is true. My essay is not research based. It is biographical. My essay is merely a description of my life and struggles that I hoped would intrigue more researchers to look into motor issues and autism.

I figure, why waste a perfectly good essay? The editors suggested I find another venue to publish my essay and I decided that my blog is the perfect venue to share “Motor Difficulties in Severe Autism.”

Motor Difficulties in Severe Autism

by Ido Kedar

Most theories about severe autism that are used today by educators and other professionals are based on the premise that severe nonverbal autism is a learning problem with receptive and expressive language delay, low cognitive capacity, concrete thinking, lack of humor, lack of empathy, lack of theory of mind, and often even an absence in basic awareness of the surrounding world. The expressionless faces, inability to make eye contact, the sometimes bizarre looking self-stimulatory behavior, and the inability to speak can make intelligent people appear not to be. As a person with autism, this is deeply frustrating. When I meet strangers for the first time, they often presume I need baby talk because of my outer presentation. I cannot stop my neurological forces from camouflaging my real essence. Inside there is a person who thinks, feels, jokes, and has a lot to say. On the outside, people see my odd movements.

If I had not been taught how to control my hand enough to type with my index finger on a keyboard, iPad or letter board, my ideas, jokes and thoughts would have been known only to myself. This is how it is for thousands of people with autism who cannot communicate. Their outside appearance is compromised by strange compulsive movements like hand flapping, waving strings, carrying random objects around, pacing, impulsive actions and odd vocalizations, and beyond that they may have difficulty following directions to simple tasks or questions, adding to the impression that they are intellectually delayed. The challenge for professionals is to imagine that in spite of a person having these very visible external challenges, for many, these behaviors have nothing to do with intelligence but rather are due to a disconnect between the brain systems responsible for thought and movement.

I hope to prompt a conversation among professionals, researchers, parents and others to reconsider current treatment trends. It is my hope that more and more severely autistic people receive a normal education, be able to express their thoughts and ideas and be able to live full lives, as I struggle to do every day.

Not Speaking is Not the Same as Not Thinking

If a person cannot speak, cannot control his hand to write, cannot control his facial muscles to express his feelings at will (hence the flat affect of autism), cannot gesture, and cannot hold a pencil to write, how can this person prove that he understands? Why is it commonly assumed that a person with these challenges has cognitive delay when everything I mentioned in the previous sentence can also be seen as an example of a motor issue? When I was a small child I had ABA (Applied Behavior Analysis) therapy forty hours a week. I sat at a table and I was asked to demonstrate my understanding of basic concepts by pointing to flashcards arrayed in front of me during drills. My instructors took data regarding whether I pointed to the right card or not. They thought they were collecting data on my receptive understanding of language. They were not. I understood everything, as any other child my age would. The data they were collecting, though they did not know it, actually measured my poor ability at that time to get my hand to touch with accuracy the card I wanted, and did not reflect an accurate measure of how much I understood. My mind might be screaming, “Touch tree! Don’t touch house!” and I would watch, like a spectator, as my hand went to the card my hand, not my brain, wanted. And down in the data book it would be marked that I had not yet mastered the concept of tree. This is the neurological force that needs to be studied.

The inability I had to express my ideas verbally, in addition to these motor difficulties, meant that I was locked internally. Unlike Stephen Hawking who lost his motor control progressively as an adult, but who is widely recognized to be an intelligent person despite being unable to speak or control his hand, I was born with my speech problem. From my earliest education, the presumption was that I was limited and didn’t understand. How could I prove otherwise when I was never taught to communicate until years later? If Stephen Hawking had been born with his current communicative disability, would the experts who assumed I was unable to understand language, have believed the same about him and never given him his assistive technology? I argue that many nonverbal autistic people are intellectually normal but are locked internally in bodies that do not obey their minds, making them appear to not understand. They deserve the opportunity to learn how to communicate.

Body-Mind Disconnect

When I was young my body rarely obeyed my mind. If I wanted to say no, my mouth said yes. If I wanted to say yes, my mouth said no. For example, I remember going to a restaurant with my family when I was small. I wanted to eat chicken. My mother asked me if I wanted to eat beef. In frustration I heard my mouth say “yes.” I had no way to correct this and got stuck with a dinner I didn’t want. This kind of frustrating experience happened often because of the unreliability of my verbal responses. I had similar unreliability with my motor system. As I described in the previous section, if I wanted to point to a flashcard in an ABA drill my hand often went to the wrong card against my mind’s wishes. My mind would tell me to walk to one room. My feet would insist on taking me to another. My mind wanted to open the car window. My hand repeatedly went to the door. My hands could not count the right number of straws or forks, though my mind knew the right number. This frustrating experience is is like gambling by rolling dice. My dice might land on my body not listening to me at all, or perhaps it would land on enabling me to do an action partially and inadequately, or perhaps it would land me on another neurological tangent altogether in self-stimulatory movements, or if I was lucky, the dice might land on enabling me to do exactly what I wished to do.

In my book (Kedar 2012), I describe how when I was small we visited relatives and my mother instructed me to give my aunt a bouquet of flowers. The problem was that my aunt was behind me and my other relatives were in front of me. What does a kid do who cannot initiate a search motorically? I gave the flowers to the person I saw, knowing it was not my aunt. If I grabbed the wrong can from the shelf after being instructed to get an item, it was not because I lacked the knowledge of what tuna fish was, it was because at that time I lacked the ability to search and scan. I still cannot adjust my blankets in bed or even initiate moving to get another blanket if I am cold. Does that mean I’m too stupid to identify how I feel? No, it means I can’t get my body to do what I want it to do, when I want it to, with reliability and consistency. This is entrapment. It is not receptive and expressive language confusion, and most definitely not a lack of thought, emotions and awareness. In my opinion, this is like a paralysis of intentional responses. When it comes to self-stimulatory behavior, I often cannot get my body to stop moving to its internal impulses though I may desperately want it to, and at other times, such as when I lie in bed unable to move to my desire to pull on another blanket, I cannot get my body to listen to me at all.

Finally, there are times when impulses completely overcome the mind like a lizard brain overcoming my intellect. I found cotton candy nearly impossible to resist when I was young and I seldom got it because it was so full of sugar and food coloring. My family and I might be walking through a crowded fair, and if I spotted a kid eating cotton candy, I might quickly snatch off a piece and pop it in my mouth, if no one was fast enough to stop me. The kid would glare at me and my family would be embarrassed and apologize. I did this despite knowing right from wrong. The lizard urge to grab cotton candy defeated the intellectual knowledge of manners. These kind of overwhelming urges can be hugely hindering in the life of a person with autism.


Improvement through Communication and Exercise

My skills, though far from perfect, have improved a great deal because I can type now on a letter board or iPad. Each year my motor control becomes more under my own control. I communicate by one finger typing and that is the best I can hope for. Still, my one finger typing or pointing to letters is the difference between stagnation in a low remedial autism program or receiving a general education. It is the difference between being thought to be a concrete thinker and being known to be funny, kind, compassionate and intelligent. My one finger typing is the equivalent of sign language to a deaf person. It is my modality of communication and it gives me access to the world and control over my life.

Since I believe my mind/body disconnect is a key to my odd movements and body apraxia, I have found that a vigorous exercise program focusing on strength, coordination and flexibility has helped me with my motor control tremendously, because the fitter I am physically, the more my body obeys my mind. Exercise also helps with my emotional equilibrium and helps to reduce the constant anxiety that so many people with autism experience.


A Human Rights Issue

Communication is a basic, innate human need and humans have an innate capacity for understanding and expressing language. The assumption that people with severe autism all have impaired thinking has resulted in the underestimating of the true abilities of thousands of individuals, lack of adequate educational opportunities, isolation, loneliness, boredom, frustration, hopelessness, and a life of entrapment within one’s own body. This price is too high.

My recommendations are many. The first is to stop assuming one knows what is in the mind of a person with severe autism simply because of what he shows externally. My outside is not my most flattering presentation because of all my odd movements and behaviors, but I believe I am a smart person who deserves opportunities in life. The educators and many professionals I worked with before I could type were limited by their low expectations of their students. Applying the same words they used to describe their students, they were resistant to new ideas, resistant to change, and rigid and concrete in visualizing the possibility of their students having greater potential.

In my book (Kedar 2012), I wrote about how I would have liked to have been taught when I was young. Here are my recommendations.

Give people with autism the benefit of the doubt.

Speak normally to them.

Teach grade level lessons in school.

Work on real physical fitness early. We need smart fitness trainers more than swings.

Look at people who have successfully taught typing to severely autistic people. Do their students progress and become increasingly independent in their communication? Does this not demonstrate something worth exploring?

Finally, listen to those people with autism who have broken through their silence to be able to describe their experiences. We offer insights from the inside. This is valuable because our outsides mislead and theories can go astray as a result.






Kedar, I. (2012). Ido in Autismland: Climbing Out of Autism’s Silent Prison. Charleston, SC, Sharon Kedar (October 25, 2012).



Exercise as an Early Intervention

I believe exercise is one of the most important early interventions for autism. In so many cases I see people with autism who barely walk ten feet and have no muscle tone, yet no one works on fitness with them. In a mind/body communication disconnect, early exercise programs can help forge a better communication network between body and brain. I’m sure the kid gym classes I took as a toddler and a young boy helped me be more coordinated, though I wish I had had more intensive help in several areas I will discuss. If I had received that support when I was younger I would have an easier time now in fitness.

In no particular order I recommend early intervention in:

1. stretching,

2. coordination–especially bilateral movements

3. cardio work, such as hiking and running

4. strength training.

My biggest motor obstacle today is that I have tight muscles and tendons. It is a problem affecting my physical comfort and will take a lot of time and effort to improve. I feel that it should have been noticed by adaptive PE teachers, or occupational therapists, or other professionals working with me physically, but they never said a word. Physical assessments looking at  the areas I mentioned should be standard because catching problems early makes them easier to fix.

Since professionals may miss things, parents should be vigilant and try to work on stretching, cardio, strength and coordination with their kids starting when they are young and making it part of their lifestyle. Going for brisk walks, doing simple stretches, picking up light weights, or touching alternate toes,  are all things young children can do daily and can help make movement and exercise comfortable and can help the body learn to listen better to the brain.


Theories that Bind Us

As a person with a severe movement and mind body connection disorder, coupled with a variety of sensory processing issues that affect my ability to take in normative auditory or visual input at times, I look and act like I have autism. The reason I look and act like I have autism is because this is what autism is. These issues affect my movements and lock me into motor pathways that may become embedded and intrusive and affect my presentation of myself to the world. I may write more in the future about what I have learned about autism and sensory processing and how it affects us, but today I want to address theories.

The obvious treatment for a sensory and movement disorder affecting all motor issues like handwriting, facial expressions, gesture, speaking, ability to sit for long periods, feel your own body, make eye contact, get out of perseverative motor patterns called stims, initiate, visually scan for items, and  be able to show our innate intelligence, would be to focus on movement and to address sensory challenges. Few professionals do this, but some do, like Soma, as well as movement and exercise specialists.

Theories about autism by people who have degrees, titles and prestige but little understanding of autism have been the norm. I have recently learned that in France where I can eat a baguette and enjoy a café aux lait in the shade of the Eiffel Tower, I would also be treated with psychoanalysis for my “mental illness” because in France my symptoms are due to my emotions, not my neurological disorder. In psychoanalysis I would lie on a sofa mute, because I can’t talk, but my silence would be blamed not on my motor/mind communication, but on my parents, specifically my mother. They will say she created my autism by coldness and rejection of me, despite all evidence to the contrary. Moreover, treatment will include “Le packing,” wrapping me tightly in cold, wet sheets for some bizarre reason. I may only be a person with autism, and not a brilliant French psychoanalyst, but I would like to try this treatment on you, you arrogant know-nothing.

Here in ABA-land, theories are equally misguided, but less cruel. Still, 40 hours a week of touching flashcards won’t help a toddler who may have an inability to focus visually, or hear speech distinctly in a sea of sounds, or be able to move the way he wants, to gain the sensory control or muscle control he needs to be able to communicate or show his intelligence. That’s because ABA believes autism is a severe learning disability that is treated by drills, rewards and baby talk. This makes recognition of the motor challenges nearly impossible because all the  data from the child’s success in performing the drills is interpreted as a measure of how much the child understands speech, and not of whether the child can get his body to move correctly. Therefore if a child is told to jump and he doesn’t jump because he can’t get his body to move at that moment in that way, his failure is chalked up to a lack of understanding the word ‘jump’ even if he damn-well understands the word ‘jump’ and everything else. To interpret data solely based on the  belief that a person’s actions are an accurate reflection of their comprehension of speech, leaves out the possibility of helping this motor trapped person address his real needs.

Did I mention it’s 40 hours a week?

Autism treatment is big business, here or there. Change therefore will be slow.

Living in the Past

I hear from many people from different countries regarding autism. As bad as I feel about our understanding of autism here in the US and how hard it remains for so many people, I now understand how much worse it is in other countries. My life has been liberated by communication. I have many challenges, but also opportunities. Most significantly, my school district allowed me to be educated in regular classes once I proved my intelligence by typing on a letter board. Now my improved skills in handwriting and typing on an iPad are making my life easier still, but I have a long way to go.

Many times I feel down and I realize how hard it is to overcome my body, but I also know I am improving and I practice motor issues daily to work on my mind body connection. But the letters I receive  tell me how it is in other countries where autism treatment is stuck in the 1950s where belief in “refrigerator mothers” causing autism and treatment by psychotherapy still rule. This is in developed countries, mind you.

How do they treat polio? Do they still use iron lungs or do they immunize? It’s inhumane. If you live in France, or other countries treating autism this way or in other outmoded ways, please share your experiences with me.

But I also know that some countries are stuck even further in the past, in the 19th century, Victorian asylum mode. I need to help change things. How do you think we can do it?

A Pitch for Inclusion

Guest post by Dr. Edlyn Pena, Department of Education, California Lutheran University

As a faculty member and parent of a non-verbal child with autism, I think about the unequal opportunities that students with autism have in life.  Too few students on the spectrum from under-resourced and ethnic minority backgrounds receive early intervention.  The typical method for educating students on the spectrum, especially when they are non-verbal, is to place them in segregated special education classes, though that is slowly changing.  My own research shows that the students with autism who are gaining access to college are almost always the ones from middle to upper income families with college educated parents.  High school graduates with autism who come from low income or first generation backgrounds rarely get the opportunity to go to college.  Where do we start to make this world a better place for students with autism?

Focus More on Systems

When my son was diagnosed with autism at 2 years old, autism professionals told me what I could do to “fix” him. Rarely did people engage me in conversations about transforming our school systems, our therapeutic approaches, employers, or our social policies and laws.  For as much energy as our society spends on treating the symptoms of autism, I challenge us to spend
energy on thinking about and putting resources into improving our schools, universities, and places of employment to make real, significant change.

Develop a Vision of Inclusion

So, then, what would it mean to support students on the spectrum to be educated in inclusive environments, to gain access to college, or obtain successful employment?  First, we must have a vision of inclusion. Admittedly, the word inclusion is thrown around a lot and is used in different ways.  What I mean by inclusion is not that we place a child from a segregated special education classroom into P.E. and art for part of the day.  It’s not that we employ someone to push a broom or wipe counters for the sake of a company hiring someone with a disability.  I want to quote two inclusion advocates, Buie Masuku and Nicole Eredics, to illustrate my point.

“Inclusion is about a sense of belonging, about feeling respected, valued for who you are. It is an all-encompassing practice of ensuring that people of differing abilities related to, for example, sex, age, and race, feel a sense of belonging, are engaged, and are connected to the goals and objectives of the whole wider society.” — Buyie Masuku

“The successful inclusion of children with disabilities and special needs in our school system relies on the belief that all children have equal access to a quality education. Inclusive education isn’t a program, a place or a classroom. It is a way of understanding and living in the real world. Because, in fact, this is a world that has people of all different sizes, shapes, colors and abilities.”

–Nicole Eredics

I’m challenging you, I’m challenging us together, to do something very difficult.  It means redefining our social and educational norms.  It means challenging the messages we hear or we speak ourselves about people with disabilities on a daily basis.

Learn About Real School Inclusion

Inclusion is not just a utopian vision; it’s real and can be successful.  CHIME Institute, a public charter school in Woodland Hills, CA, educates general education students, students with disabilities, and gifted students all in the same classroom.  How do they do this?  They use a co-teaching model in which general education teachers co-teach and collaborate with special education teachers to meet the needs of all students.  A number of highly-trained paraprofessionals work with children in the classroom to make sure they are supported.  And rather than pulling students out for speech therapy or other therapies, the school therapists work with the students in the classroom, during lunch, or on the playground with their peers to work on therapeutic goals.  I have visited CHIME and watched with tears in my eyes as non-verbal students with communication devices like my son and typical peers accessed the same teachers and curriculum together.  It wasn’t questioned, it was the norm.  The implicit message is that all
students belong and are deserving of a quality education.  CHIME Institute and other inclusion schools (like SWIFT schools) are trailblazers.  The leaders of these schools did not give in to misconceptions that the standards or the curriculum would be less rigorous just because students with disabilities were included.  In fact, research has refuted the idea that academic performance
suffers for students without disabilities who are educated in classrooms with students with disabilities (Ruijs, Van der Veen, & Peetsma, 2010; Sermier Dessemontet & Bless, 2013. And of course, the benefits to students with disabilities who are educated in inclusive settings are numerous, with increased outcomes in math and literacy skills (Cosier, Causton-Theoharis, &
Theoharis, 2013; Dessemontet, Bless, & Morin, 2012)

CHIME Institute is living proof that we can foster an education system that is accessible to all children of all levels of ability.  And why not?  All children do better in an inclusive environment.  It strengthens the moral fabric of our community and more rigorously prepares students with disabilities for higher education and future employment.

Learn About Real Inclusion in the Work Place

Now, this is a good time to talk about companies and employers who have launched strategic efforts to employ people with autism and other disabilities.  Take, for example, Germany-based software giant, SAP.  This tech company sees autism not as a disability but as an asset.  They realize that people with autism have an attention to detail and can be savvy in computers and technology.  SAP first piloted the idea of hiring people with autism in India, Ireland, and
Germany.  After hiring six workers on the spectrum to test software in India alone, the company reported increased productivity.  Now, SAP has extended employment opportunities to people with autism in the United States.

We have so much to learn from places like CHIME Institute and SAP.  The people behind these ideas had the courage to change the way we do business as usual in education and in industry.  It can be done! Given the growing needs of students with autism, there has never been a more critical time in our history that we gain the courage to envision and create alternative approaches and structures to include students with autism in meaningful, long-lasting ways.  Please join me on this journey.

Thoughts on a Tough Senior Year

I graduated high school on June 5 with a diploma. My GPA was the fourth highest in my grade. I did it despite being really autistic. I did it though I get tense and even aggressive sometimes. I did it though I can’t speak verbally and communicate by iPad or letter board.

I can’t stop being autistic. It is with me all the time. I’m wired in a peculiar neurological way. Despite this, I thrived, taking AP and Honors classes and doing my work along with my normal peers. The school was great and worked like a team. My teachers were supportive and respectful and I am grateful.

My last year suffered because of a crisis in 1:1 support. This nearly turned me into another person, I was so stressed and overwhelmed by the situation. But I can smile again and I will put it behind me and move on.

Because autism makes us so reliant on our 1:1 support, when it’s strong we can flourish. If it’s not, we can collapse. Now that I have graduated, I will have more power to choose who helps me so I need never be trapped again with a bad match and bad leadership.

Thanks to all my teachers, the school administrators, Adrienne and Anna.


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.

Planting Seeds

I receive many letters from people who are not parents of kids with autism but they are relatives or friends of someone who has autism. They have read my book and see the child has the potential to understand, but they cannot influence the parents to change the way they interact with the child or  teach communication. It is painful to read these letters because I know the kid is trying, they are trying, and the parents aren’t ready to hear the message. So they ask me how can they change things.

I wish I knew. The parents or teachers must be open to new ideas. If they’re not, what can one do who has no guardianship? You can treat the child differently yourself, talk to him normally, perhaps even see if the parents will let you introduce a letter board just for practice, but beyond the steps people have told me, it cannot be forced.

I guess one argument to the parents could be, what do you have to lose by trying? Like I’ve written in the past, how is it harmful to read someone an age appropriate book or speak in normal speech tones? This is modeling for people who have never seen their child treated like that.

I know several parents personally who were not open to teaching their kids how to type in the past because they couldn’t see their potential, but after many other kids they knew began typing they started to become more open. They had lots of conversations with other parents and gradually it helped them.

I don’t blame them. They have had lots of professional opinion to overcome as well as confused and conflicted emotions. I guess it’s not always immediate, but you are planting seeds. Hopefully one day they will germinate.

Communication, anxiety and neurological instability.

One of the big complaints of skeptics who refuse to believe nonverbal people with autism can communicate is about support. They have significant doubts if anyone receives tactile support. In fact, if anyone receives tactile support they are sure the communication is fake. I think, to be fair, that sometimes it is hard to tell how much is the autistic person and how much is the aide, just by looking, but sometimes it is quite obvious that the support is just there for emotional support or anxiety control. It is minimal, a light touch far from the hand or arm and totally not prompting movement. My good friend likes a hand on his shoulder when he types. It gives him stability. If someone put a hand on your shoulder could you write accurately in a language you don’t understand but the other person could? I doubt it, but try and see if it’s possible.

But skeptics aren’t even satisfied with independent typing. I type with no tactile support, no prompts at all except for a reminder to keep going or to pay attention if I get distracted or pause too long. Still skeptics are concerned that someone sits a foot away from me and imagine that through some magical means I am typing their thoughts. If I was alone in the room, they say, then they could believe I was really typing my own thoughts.

I am somewhat fed up with this because they do not understand the nature of neurological instability and anxiety in autism. They have an innate bias in believing that autistic minds are not capable of understanding language. If that’s so, why bother to drill us with flashcards?

How many times have nonverbal people emerged from an inability to communicate, often due to a body movement problem, to show that they were hearing and understanding all along but were trapped and unable to show it?

My father, who is a scientist, talked about the unknown impact of emotional support on anxiety and performance and he shared the example of King George in the film, The King’s Speech. King George suffered from a terrible stutter. He was unable to speak in public without stuttering and stammering continuously and with great anxiety and humiliation. Forced to become king when his brother abdicated the throne, George had to overcome his speaking problems to deliver speeches to the British people as Britain entered World War II and to help keep up their morale throughout the war.

His speech therapist, Lionel Logue, was always with him when he spoke to provide emotional support. He never left the room. So, looking at the situation skeptically, should we say that the king lacked the ability to deliver speeches and was Lionel Logue’s puppet? If judged by the same standard as people with autism who type, perhaps we can determine that he was not capable.

Let’s keep an open mind.