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Wednesday, June 23 2021

Underestimated: An Autism Miracle

The statistics vary slightly depending on the study but about one in fifty births in the U.S. today will have an autistic diagnosis by the time the child is 8 years old.  That adds up to about seven million people with autism in this country.  Up to 40 percent of the children with autism spectrum disorders remain minimally speaking even after years of interventions.  That is nearly three million people! 


For parents of autistic children along with their caregivers it is a daily struggle to communicate with these kids and adults.  Because of this, parents are at a loss in their ability to ascertain the needs of their children, and parents, teachers, and caregivers are almost universally unaware of the cognitive ability of the child.  For most families with children categorized as severely autistic or profoundly autistic the fear of their child needing lifetime assistance is heartbreaking, exhausting and requires financial planning that hangs over them as they themselves get older. 


Most non-speaking autistic kids receive care from specialists in speech and behavior therapy and most improve to some degree.  However, their methods are weighted in the belief that there is a cognitive deficit in the brains of autistics with the emphasis of treatment to fix the speech patterns.  Elizabeth Vosseller SLP (speech language pathologist) broke with the accepted protocols and assumed that most autistic people were cognitively normal but were simply experiencing an inability to verbalize their thoughts because of their motor deficitsThe term for these differences is apraxia vs aphasia.  Broadly defined, apraxia is the inability to perform purposeful actions, because of brain damage.  This is much different from aphasia which is the loss of ability to understand or express speech caused by brain damage.  Many autistic children have apraxia of their head, eyes, and limbs and now because of Elizabeth Vosseller it is believed that they may have speech apraxia too. 


What Vosseller developed to address the motor dysfunction, was sign 2 communicate (S2C).  Because most autistic people have problems with both gross and fine motor movements, she developed a sign board that enables an autistic person to poke a letter to spell out their thoughts.  As their coordination improves, smaller sign boards are used and eventually a keyboard replaces the boards.  Developing the neuronal pathways to advance from a big board to the keyboard can take from weeks to many months to master. Once accomplished, parent and child can communicate freely and in many cases for the first time.  For the child with autism who has been unable to communicate adequately for their entire life, it is akin to being let out of prison.  They finally feel liberated and can give voice to their life, communicating to the world their thoughts, aspirations, and their desire to live autonomous lives.  For the parents, tears of joy and restored hope both flows freely.


The book, Underestimated: An Autism Miracle details the life of a profoundly autistic 17-year-old boy Jamison (Jamie) Handley.  His father J.B. Handley is cofounder of Generation Rescue, a nonprofit organization focused on helping autistic children. After graduating Stanford University with honors, JB Handley cofounded Swander Pace Capital where he was managing director of more than 1.5 billion dollars for two decades.  Today, he is a blogger and author and has spent the past 17 years investigating all kinds of conventional and alternative treatments for his son.  With limited success, he reluctantly tries one more avenue recommended by a woman that successfully tried with her own autistic son.  That avenue was S2C and to hear the story from start to finish, is nothing short of a miracle.  In one year, Jamie transforms from a 17-year-old non-speaker to everyone’s shock and amazement, a verbose, opinionated and above average student. He even contributed to the writing of the book.  Jamie details the frustration he felt his entire life hearing and understanding everything going on around him and not being able to respond in a way that anyone could appreciate.  His mind was trapped in a body that from a neurological perspective was like a stroke victim that had lost speech and motor skills but still had an intact mind.  When questioned by his father about how he was able to find joy and remain sane when no one knew the real you, Jamie responded by spelling “I kept believing that someday I would be able to talk and that kept me going”.  Presently Jaime is taking calculus and hopes one day to go to college and study neuroscience and the brain and motor system.  A year ago, JB said the extent of Jamie’s conversational skills was not much more than “Potty please”.


“Miracles are not a contradiction to nature.  They are only in contradiction with what we know of nature.”  Saint Augustine


The most common response to hearing a “miracle” like this would be to wonder is Jamie Handley an aberration in the autistic world or is it possible Elizabeth Vosseller’s S2C uncovered a way for three million non-speaking autistic people a way of communicating effectively? According to Vosseller, Jamie is not unique.  So far everyone she has worked with has responded.  According to Jaime, he thinks there are millions who could be helped by this method, and he adds “The President should know about this”. Today Jamie has formed friendships with other young men who have had success with S2C, and they regularly chat with S2C online in a group they named Dude-Bro Speaks. 


Links  International association for spelling as communication  Growing Kids Therapy Center  The Handley’s inspiring interview 


Final Thoughts

Presently the dominant organization in the autistic community has been ASHA, (American Speech-Language Association).  So far, they have not embraced facilitated communication (FC) and it is their official position that the facilitator is helping the non-speaker and they refer specifically to Rapid Prompting Method (RPM) a similar technique to S2C.  Truthfully, in the beginning of treatment there is assistance given to the non-speaker in S2C but once the non-speaker attains a certain level of competence in motor function, no help is needed.  Unfortunately, the same distrust is the official position of the Behavior Analysts Certification Board which certifies ABA’s, Applied Behavioral Analysts, who also are those who often work with the autistic population. 


Fortunately, the successes of Elizabeth Vosseller and those she is training are fueling a desire for more practitioners trained in her work despite the misinterpretation of her methods.  If you know of someone with an autistic child, please let them know about this so they can investigate S2C for themselves. 

Posted by: Dr. Goldstein AT 10:52 am   |  Permalink   |  0 Comments  |  Email

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