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.

Having More Say in Our Lives

My hope is that one day autistic people will be taught to communicate as young as possible. It certainly would be interesting to see how life would be if instead of drills and remedial lessons kids got lessons in age appropriate lessons, typing for communication and exercise specifically to awaken the mind/body connection. In my opinion, it is likely that the severe autism symptoms might be lessened because the urge to escape a frustrating reality will be less intense. One day I hope to put my ideas into a program for other people with autism. It will be the world’s first program for people with autism run by a person with autism.

Isn’t that pathetic?

How many autism organizations have people with autism consulting them or on their boards? If inclusion and diversity are important, why do so many autism experts fail to consult people who have autism? If I had an organization for blind people, I think consulting with people who are blind would be valuable. If I had an organization for people in wheelchairs, I think understanding their experiences would make treatment better suited to real needs. Must those of us with neurological issues be isolated from our own treatment options? My hope is to change this discriminatory practice.

My Speech at the Autism Society Self Determination Conference

When you think of your future, you have lots of ideas.

So do I.

Remember when you finished high school? What were your plans?

My plans are similar. I want a college degree. I want independent living one day. I want a relationship. I want a fulfilling job. I must try to get these despite my autism and my not speaking and all the challenges this brings.

From our earliest ages people with autism are used to being told what to do.

Touch your nose!

Touch your head!

Look at me!

Hands down.

All done!

Self-determination means having the right to express what I need to achieve my goals.

This means that the unique and individual needs of people with disabilities need to be addressed. My needs are different than the cookie cutter. This means that agencies, like Regional Center, and others, that support us in our adult lives, need to be adaptable.

I want to get the right support. The support I need may be very different than what other people with disabilities, or even other people with autism need, to succeed in college and in a career. I am a bright enough guy to know my needs and the kind of support that will enable me to achieve my goals. I want to be sure that the support and services I will receive after high school will be what I truly need and not based on the needs of other people with different plans or different talents.

My experts have missed the mark most of my life. Kind of like a tennis player who keeps missing the ball or hitting it to the wrong court.

That’s why I would really like to plan my own course and have a say in my own life.

We need partners to support us, not planners to tell us where we belong.

Isn’t that supposed to be the objective of all the services we have received all our lives anyway?

I warn you about one thing though. A consequence of teaching autistic people to type is that we have opinions and we have determination. Once we can express them we will demand a voice in our own futures.


My Speech at the Mental Health Advocacy Services Celebration

I am truly honored to be standing here tonight receiving this recognition. I am honored to be here with our District Attorney, Jackie Lacey, too. It is a reminder that advocates can be high school students or politicians, or anyone else. We just need to care deeply about a cause.

As you look at me, some of you must be wondering if I really wrote my speech.
After all, you’ve probably heard that most nonverbal autistic people have low cognition, no insight, no theory of mind, no inner world and poor receptive language.

Guess who told you that? It wasn’t people with autism, that’s for sure.

I have a very misunderstood condition. My disability is caused by my brain’s faulty linkage to my motor system. So truly, I think and understand though I may look like I don’t. Add to that a sensory system that is malfunctioning, and you have an idea how tough it can be.

The truth is, autism itself is easier than the incorrect assumptions by the so-called experts and specialists out there. A locked-in, motor impaired, sensory overwhelmed child cannot escape this on his own. Consequently, few nonverbal autistic people learn to communicate. Experts comfort themselves that we can’t communicate because we don’t understand.

I got fed up with this, because all around me are smart autistic people dying of boredom and loneliness, not able to communicate one idea more sophisticated than a basic need.

My decision at twelve was to speak out and correct this misinformation.

I was denied an education in elementary school because of the expert opinion that an academic curriculum was beyond my intellectual abilities. Now I am an AP student in 12th grade, ready to go to college next year. If my parents had listened to my experts I would still be stagnating in 1+2=3 expectations.

Things are changing gradually. Other autistic typers are speaking out too. We face resistance by people who believe theories over truth. But in time I know that the current paradigm will be discarded, like so many other incorrect theories, and the nonverbal will at last have a voice in their futures.

Thank you.