I was recently inspired by a beautiful book entitled “Walking Papers” by, Franceso Clark, founder of Clark’s Botanicals. At the age of just 24, Clark broke his neck in a diving accident and was paralyzed front the neck down. Very much like the “Welcome to Holland” story, Clark was advised to accept the paralysis and “move on” with his “different” life. Doctors and therapists told him in effect, sure being paralyzed is tough but you’ll get used to it. Deftly, Clark responded to his doctor, “how about you get used to sitting in this chair the rest of your life. ‘Move on’ with my life, why don’t you move out of my way.”
Clark was determined that he could do better than accepting the grim prognosis he was given. Franceso actively started researching all possible spinal cord treatments and interventions on the (that’s right!) that treacherous internet. Franceso’s spinal cord doctors, much like our friends in mainstream autism research, abhorred such self-empowerment and education. Surely Clark would be victimized by those “snake oil salesmen” who stalk the internet preying on all the dumb and gullible disabled people and their families. It is obvious we are all sitting ducks, waiting to be exploitive, too stupid for our own good.
Clark’s father is a physician and his mother a brilliant scientist. Franceso hypothesizes that they were more open to alternative interventions because his father went to medical school in Europe and his mother is from Italy. Clark was taken aback when his doctors and therapists actively discouraged him from researching his injury and avoid “getting his hopes up.” Didn’t he know he would never walk again, accept it already, was their message. Franceso was astonished at the vehemence of the medical community’s resistance to trying anything new or funding alternative intervention research. Hmm…boy, that sounds familiar.
Christopher Reeve became Clark’s hero for his unrelenting advocacy for innovative spinal cord research and determination to hurry science. Reeve loved to joke about neurologists. How many neurologists does it take to change a light bulb? Who knows, first they have to release an RFA. Reeve argued that by investing aggressively in intervention research, more people could live productive independent lives, saving the taxpayers so much money in the long term. Again, so familiar! As with autism there are so few evidence based spinal cord injury treatments, we cannot afford to abandon those not making progress, we must support scientists with new ideas. Complete paralysis is so devastating and so expensive, isn’t it foolish not to put everything on the table and invest in exciting innovative science? Ah, Clark was naïve; he did not yet understand that “innovative,” “new,” “exciting intervention possibilities” and “new generation of scientists” are all verboten adjectives and ideas. No, we must accept the status quo and keep funding the same people with the same stale ideas, over and over again- the more arcane and academic the research the better! Clark sure had a lot to learn.
Instead with the support of an amazing family, Clark pursued all kinds of groundbreaking interventions. When his therapists told Franceso he should be content with learning how to roll off a therapy mat, Clark configured an upside down bicycle in his garage to strengthen his weak core and leg muscles. People with spinal cord injuries have poor circulation, are unable to perspire, resulting in blocked pores, eczema, infectious bed sores and all over bad skin. After dermatologists’ lotions made Clark’s sensitive skin worse, he was advised to accept the situation and “move on.” I always want to ask- move where? Anyways, Clark and his family created an organic skin care company instead. Their products contain no steroids, artificial preservatives, parabens, etc…Despite his doctor’s insistence that “alternative” stuff was a waste of time and money, the Clark’s Botanicals lotions really worked. The eczema and rosacea were gone. How great that the one part of his body he could truly feel, his face, was no longer covered in sores and rashes.
Apparently Clark was unaware of the true and hidden dangers of organic ingredients and how they exploit and endanger people. Good thing Dr. Susan Hyman did not get to him!
After years of research, Clark went to China for stem cell surgery and left with new feeling in his trunk and arms. At the end of the book Clark was picking up a French fry with his fingers. Franceso would be the first to say that none of this progress came easy and yes, he is disappointed to still be in a wheelchair and frustrated at the anemic pace of spinal cord research. However, if he had listened to the hope killing doctors and therapists Clark might still be on a respirator, barely able to speak, covered in bed sores, his legs and arms wasting away, unable to move a muscle. That should teach Clark that his doctors know best!
The parallels between the worlds of autism research and in “Walking Papers” are humorous and remarkable. The fear of trying anything new, resistance to change and refusal to listen to stakeholders is an all too common phenomenon in the research world. These archaic belief systems are as outdated as “women don’t belong in the workplace,” or “fathers shouldn’t be in the delivery room.”
The saddest part is when people within the community fight interventions that are helping others in the same community. Rather than focusing their attentions on the nightmare that is the Judge Rothenberg School for the disabled, schools and residences that abuse their ASD students, insurance re-imbursement or providing actual help to ASD families in need, defeatist advocacy groups are obsessed with the idea they have accepted defeat and so should you. The idea that other people are trying something new and having success terrifies them and makes them feel guilty. In turn they project this fear into childish and churlish proclamations that alternative interventions “make parents feel guilty for not trying them.” Rather than focusing their energies on pushing the science forward, they perseverate on their desire to have only ABA, genetic and brain research studied, all the while battling innovative ideas as if their lives depended on it. It reminds me of people without health care, without jobs, without access to a decent education screaming and marching on the capital to outlaw flag burning. Wouldn’t their energies be better spent elsewhere?
We see the same problem within the research community. Early intervention, the genome, Fragile X research, brain imaging, eye gazing are all big business. These subjects have made a lot of money for some institutions. Safe, academic and incremental work gets rewarded with big grants, their studies get published in prestigious journals, the investigators’ labs grow, they get exciting new machinery or a department chair. Things are going great for this community, why change a thing? These academics most frequently interact with like-minded academics, rarely do they speak in front of the parent community nor do they express much interest in the bigger picture of autism. Instead these researchers embrace hope killing efforts, emanating from their fears of loss of relevance and power: GI research is “too risky,” dietary interventions are “dangerous,” “regression is rare,” “there is no autism epidemic,” “what is PANDAS?” Places like CHOP and Childrens Hospital of Boston fall victim to this group think and hunker down in genetics, fearful of change.
Conversely parents and doctors in the progressive world of autism research and interventions are constantly having their beliefs challenged. It can be annoying but it is a healthy process that prevents one from calcifying. In exchange for having an open mind or an unpopular opinion comes a certain amount of humility. After hearing John Elder Robinson speak about TMS, I thought wow, there really is something there, I was wrong, you just never know. Like Franceso Clark we cannot afford to be afraid to expose ourselves to new and different ideas or admit when we are wrong. Right now the biggest mistake would be to allow fear of change and the paralysis of the professional defeatist movement to highjack innovative science. Christopher Reeve and Franceso Clark kept hoping, kept researching, kept trying and continued progressing despite hope killers urging them to give up and “move on” with their lives. So to my fellow parents reading this keep using the internet! Keep asking questions, keep advocating for meaningful stakeholder representation. Continue to support organizations that embrace progressive research. All of our children are benefitting from your efforts. Hope defeats fear every time.
Katie Wright is a Contributing Editor for Age of Autism.