Several years ago, I penned an article for "Angels on Earth" Magazine (Loving David), regarding my young daughter's belief that an angel often visited, and watched over her brother, David, who has autism. I had no idea when I wrote that story of reverence for my nonverbal son, that the severity of his autism would lead us full circle back to our core beliefs about his diagnosis.
Now, years later, while reading this luminous work by William Stillman, I felt validation of a truth we had always suspected, but came dangerously close to losing touch with: our autistic children are creations of God and a manifestation of His Divine Plan. It feels so good to come out of my closet again! :)
William Stillman has woven moving, haunting accounts either by people with autism, and/or those who love them to explore spiritual realms where clinicians often arrogantly refuse to acknowledge as anything beyond "hogwash". Buried in this sensitively treated text, Mr. Stillman reminds us, above all things, to show the same sensitivity and respect in our daily dealings with people who have autism as we would our "neurotypical" acquaintances. More importantly, he builds a compelling case as to why we should always assume the intellect and competence of persons with autism.
The arrogant presumptions by those who label themselves "behaviorists", "educators", and "clinicians" drive home a painful, common message: autists, especially nonverbal ones, are hopelessly retarded, largely ineducable, and spiritually "empty" souls. As a parent of two with autism, I am often left with the the feeling that these "professionals" have spent little, if any time at all, truly getting to know, and understand, a person with autism.
While our youngest son who has autism was always verbal enough to make his intelligence apparent to would be skeptics (J. was born knowing how to read--nobody taught him), our older, nonverbal son struggled greatly to "prove" his intellect. His extreme sensory dysfunctions complicated things further. A brief spell of beautiful, peaceful years when David used pictures to communicate brought him some welcome respite, and access to more "intelligence assuming" curriculums. Then as he aged out of early intervention, his pictures began to fail him as a trustworhty form of communications. Our beautiful boy had more to tell us than what he wanted to eat, drink, or wear, and his pictures could not account for his maturing communications needs. Predictably, as his world narrowed, his behavior began to grow severe. In response, his "teachers" and "behaviorists" began to narrow his world further in response to his anger and frustration. Mental Retardation was slapped onto his list of labels, further narrowing his options. The light in my son's blue eyes grew painfully dim. We were losing David.
No amount of arguing could budge his school district into moving him towards intensive augmented communications training. They felt they'd done their job. Our child could communicate basic wants and needs. While we struggled to find resources to advance our little boy's communications further, we lost our child. His marathon episodes of aggressions and self abuses became so frequent and severe that his school district placed in a behaviorally focused group home in a program designed to force him into "compliance" with a rigid set of behavioral tasks. We were told by experts, that this was his only hope for a life outside of an institution. He grew worse, and worse. In the name of "treatment" our son faced injuries, human bites, pinching, hitting, food deprivation, falls through windows, and finally, witnessed and documented sexual molestation. Against all "expert" advice, we bought our little boy home, where at least we knew he'd be safe. Nobody could argue that he never got wounded or molested on our watch.
It wasn't until we set aside "expert" notions about autism, and began to operate on our original assumption that our nonverbal son was an intelligent and competent human being that we finally began to get over the hump of his seemingly insurmountable "behaviors". Seeing some changes from the first day of our "new attitude", we committed ourselves to previously "Unthinkable" approaches--the only ones we hadn't tried.
Here, during my son's eleventh year, we abandoned everything we were taught to believe about "how" to teach a person with autism. Daily, we are rewarded with increasing amounts of time where our son feels able to reveal the bright, luminous, funny--and wounded, traumatized individual that he is.
Today, our eleven-year old is an amazing young man by anyone's standards. He communicates with a letter board, he has pen pals, he writes poetry, he craves material about astronomy and ancient cultures, and no, we don't facilitate. He accesses grade level curriculum using the Rapid Prompting Method, and we are in the process of trying to convince his school district that behavioral approaches do not work for every child.
In trying the one thing clinicians warned us to never do---assume our child a capable, intelligent human being---his lost childhod was unearthed and reborn--hopefully before the wounds ran too deep to salvage his boundless spirit. While I can't change the painful mistakes we made in trying to help him live with autism, our son understands that we did the best we could with the tools we had available at the time.
In truly accepting autism, and embracing it as an integral part of the children I have, all of our lives are once again filled with reverence, joy, and miracles. I often find myself describing myself as a woman redeemed by her children's struggles. The best there is to say about me....or anyone in my family....revolves around having known, loved, advocated for, and accepted as the miracles God intended---two amazing children with autism.
Does that mean that in accepting our son's autism as a gift, we don't seek improvements which will ease their paths and broaden their worlds? Absolutely not! We simply operate on the same set of assumptions for our children with autism that we would for any child---we want them to become happy, healthy,contributing human beings.
In closing, my son David, has a message hew wants to share with Mr. Stillman, which he wrote in response to reading some of Mr. Stillman's work on the fundamental rights of autists to communicate:
When you look into the sky
The stars are all you'll ever see.
I have chosen instead to see
The possiblities lying in between.
"Autism And the God Connection" is a book about just that...choosing to see the possibilities beneath the label. Thank God we revisited that choice before our son's radiant spirit was dimmed forever.