Emergence

“Emerging from disability” has been the best way I have heard describe how a person can progress living with autism.  I first read this in John Elder Robison’s article “Jerry Seinfeld and Autism” from Psychology Today magazine.  It reads (click here for full article):

“The ‘overcoming disability’ model is an unhealthy goal or way to portray autistic people.  Emerging from disability is a healthier perspective.  Autism is not a demon to be battled and overcome.  It is a difference that can cripple or render extraordinary.  Most autistics are disabled as children because our sensory apparatus is different, our communication skills are weak, and we have not yet learned coping strategies, or found our gifts.

When we find comfortable environments, learn to communicate, and find what we can do well, we begin to emerge from disability.  When we find places where our autistic differences are respected and we discover they give us advantages, we emerge more. Perhaps Mr. Seinfeld will talk of his own emergence and so provide a constructive model to younger people who follow.  I don’t know what he will do but I say, let’s give him a chance.

Please join me to welcome him, and see where it leads.  If we don’t like what he has to say, we can tune him out and go about our lives.  Remember that we must first extend compassion and acceptance to others if we are to ask and expect it for ourselves.”

              -Closing paragraphs of John Elder Robison’s Psychology Today article “Jerry Seinfeld and Autism”

Whether or not we agree with Seinfeld on his self-diagnosis of being on the autism spectrum, Seinfeld’s admission has thrust into the public the debate that has long gone on in autism circles: whether autism is a disorder or difference and whether our goal is to cure and eradicate or accommodate and accept. 

I am a mother of a child whom most professionals would classify as having severe, low-functioning, non-verbal, classic autism.  Some of my fellow parents with children like mine have taken offense at Seinfeld for daring to say he has autism because he is successful and his life seems so easy in comparison to our kids.  Robison made this astute observation: “The ‘my autism is worse than yours’ is a counterproductive and destructive way of thinking.  Look at depression and Robin Williams.  He looked pretty successful and functional a few month back, didn’t he?  But now he’s dead.  None of us can know the struggles of another.  There is no better and worse in autism’s affect.”   

I say all this to lead me back to my original idea that the “emerging from autism” paradigm ought to replace the overwrought language of “overcoming autism.”  I don’t think anyone on either end of the spectrum truly ever overcomes autism, nor should it be a goal.  It places an unnecessary burden on both parent and child to eliminate the distinguishing markers of autism.  In my early days in the world of autism, I learned to envy the stories of other parents whose children had become “indistinguishable from their peers.”  I felt and witnessed in others the enormous crushing weight of failure, guilt, and despair for not being able to achieve this in our children.  This doesn't just affect parents, but also the children who can sense their parent's disappointment in them and society's disapproval of who they are.

The idea of emerging from disability is a much gentler one.  I think of an exquisite statue emerging from under the careful chiseling of a piece of marble which forever retains its marble quality.  In a similar way, each person with disability- and in a way we all have some sort of disability- can progress and emerge into his or her God-given potential while keeping true to the substance from which he emerged.  Emerging is a long process with its end point much different from its start.  

My son Philip has progressed in this way.  I want to stress from the get-go that despite Philip’s progress, he continues to possess autistic traits which confer marked challenges.  He is still largely non-speaking, has difficulty in many activities of daily living, needs constant close supervision, experiences heightened anxiety and sensory disturbances, and exhibits stimming behavior such as movement, flapping, and vocalizing as a means of dealing with his altered experience of the world.  But something wonderful is also happening.  It is slow enough to not be discerned from one day to the next, but becomes unmistakably obvious when looked back at one month, 6 months, and especially a year ago. Philip is indeed emerging.  

Philip’s emergence began in earnest when we met Soma to learn Rapid Prompting Method (RPM) 2 years ago when Philip was 9.  It was the first time we knew he was capable of truly communicating more than just a few basic wants.  It was the first time we understood he was comprehending us and was in tune with the world around him.  A year later, Philip was setting goals for himself (his New Year’s Resolutions from 2014 can be viewed here):  learning to type, transitioning to a regular school, advocating for other non-verbal autistics to learn effective communication, generalizing his skills with others, and making friends.  As we near the end of 2014, Philip has been able able to meet many of his goals.  In February, Philip transitioned out of his ABA school where he was still learning to identify actions on flashcards and match numbers and their amounts from 1-5.  Now at public middle school, he is enjoying age appropriate education and is given accommodations to participate using his letterboard at first, and now typing.  In July, Philip attended the Institute for Communication and Inclusion Conference and was first exposed to the autism community.  He heard from mentors Naoki Higashida and Tracy Thresher who type to talk.  He met disability advocates Lydia Brown and Amy Sequenzia.   He met many kids and adults on a similar path as him.  When we returned home, he began typing with much more ease.  This year, Philip really began his mission to teach others about non-verbal autism and advocate for better education and effective means of communication by writing extensively about his thoughts and experiences in his blog and Facebook page.  He wrote to President Obama.  He corresponded with teachers, parents, and therapists to answer questions and help them understand his point of view.  Philip has been making friends.  It started with a few online pen-pals with kids like him, and now is socializing with friends from school and from our local autism community.  In September, Philip started meeting biweekly with autistic friends to chat and play games, each assisted with their communication devices.  In October, Philip attended his first school wide social event.  A girl even asked him to dance.  As Philip has been exposed more and more to the regular world, he has found his motivation to accomplish his own goals in communication, body control, and relationships.  He has been able to type with his teachers, aides, and other family members.  His younger sister Lia is particularly good at conversing with him on the letterboard.  He has discovered his own strategies to keep calm and more under control.  He has dared himself to participate in previously daunting social events with both his typical and autistic peers.  All the while, his personality is shining through more and more.  He is an earnest learner, a thoughtful soul, a loyal friend, and a middle school boy just a bit smitten with girls.      

Some may wonder what the catalysts were that made it possible for even a “low-functioning” child to begin to emerge from his disability.  In the same article referenced above, Robison pinpointed the three answers: 

1. Acceptance
2. Respect
3. Accommodation

These 3 things are often given without reservation to people with typical neurology, but withheld (many times unwittingly) from people who deviate from the norm, and especially if they have no means to communicate.  Awareness campaigns which represent autism as a thief, an epidemic, or disease reveal a lack of acceptance.  Media coverage which sympathizes with parents who murder their autistic children demonstrates lack of respect.  Schools refusing to support children in their individual learning needs in order to keep the status quo show lack of accommodation.

For us, it was our visit to Soma, which turned us away from the prevailing thought about autism, and awakened us to a new way of thinking and acting.  In many ways, it returned us to a basic tenet of my faith: do unto others as you would have them do unto you.  This has made all the difference.

At a Halloween Party with Classmates