“Instead of focusing on your differences, think about the things all people have in common… like the tendency to focus on their differences.” Anonymous
“I would never want to belong to a any club that would have someone like me for a member.” Groucho Marx
The purpose of this blog is to provide a more dimensional understanding of autism. In some of my previous writings I have tried establishing dialogue in regards to the meaning and implications of the neurodiversity movement. I was happy that the dialogue proceeded with civility. In any discussion, lack of courtesy and politeness engenders doubts and enlarges any existing demarcations between its participants.
In the following paragraphs I would like to question assumptions on both sides of the neurodiversity divide. I do not seek to be right but rather to explore pro- and con- arguments in the ongoing debate. I do not have a judgment for possession of the truth. I expect readers to have different points of views for which they may offer their own comments.
I have stated that neurodiversity can’t take precedence for sponsoring as initiatives the avoidance of pejorative terms that “pathologize” the condition nor the so-called civil rights advocacy when publicizing the physical and emotional abuses to which some ASD individuals have been subjected. The advocacy for equal rights/opportunities is inherent to every autism support organization and is ingrained in each one of us as part of our common human dignity. If these initiatives were the core precepts of this movement then Bernard Rimland, rather than Judy Singer, would have been the founder of neurodiversity.
The main tenet of the neurodiversity movement is their health-related judgment that autism and other neuropsychiatric conditions comprise part of the normal variability of traits that characterize the human race. In this regard they advocate that these conditions belong to the social rather than the medical sciences. If this were the case they logically deduce the lack of need for either treatment or research into these conditions. Therapeutic attempts, as with applied behavioral analysis, are therefore deemed as misguided and unethical. These opinions are not of the few but can be found widespread within the neurodiversity movement (i.e., type “neurodiversity”, “research”, and “cure” into any search engine). As the author Andrew Solomon has stated “those who contend autistics are neurodiverse…feel they should be left alone.” Probably the greatest advocate for this polarizing stance is Ari Ne’eman and the Autistic Self Advocacy Network (ASAN). In truth, other neurodiversity advocates, like John Elder Robison, support a softer approach that favors both treatment and research. John primarily advocates for those research avenues that can create a difference “now” rather than in future generations. (Note: This same stance was supported by Bernie Rimland who went on to establish the Autism Research Institute, see http://bit.ly/1zuuHPp).
We have to recognize the discoveries of science including the progress created by the introduction of antibiotics, chemotherapeutic agents, and anticonvulsants. Do we want to return to folklore medicine? At one point in time epilepsy was known as the “Sacred Disease”, AIDS was a curse, and the plague was caused by divine wrath. Let’s be clear that there is nothing sacred about any of these conditions. Disease is not caused by the gods. To think otherwise denotes lack of knowledge and, on occasion, lack of empathy. These are serious conditions. Seizures in ASD may be associated with falls, bone fractures, cognitive impairment, disturbed consciousness, and unexplained sudden death. This and other comorbidities are serious conditions and they DO need treatment!
Many years ago priests were stationed between life and death and their advice, rituals and comfort, were sought in these matters. In more recent times this role has been transferred to physicians. Now the neurodiversity movement asks us to embrace a further shift in this matter. Should the plumber, carpenter or business person be able to take an authoritarian stance in regards to health matters? Can a layperson offer medical advice when he/she lacks proper education in these matters? …The perplexing answer, and a humbling one for physicians, is a resounding yes. We can’t typecast people by the disorder they have. As I have followed the neurodiversity dialogue with many autistic individuals over email my view has broadened to consider ASD an existential problem that emphasizes subjective testimony rather than the empirical one provided by science. Indeed, I agree with the notion that the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association is a haunted house wherein diagnoses are instruments used to constrain individuals into the preconceived notions of health professionals.
Medical education engenders a schooled obsession with creating labels and establishing protocols. Pain, on the other hand, is an individual experience that encompasses an enormous field that almost always escapes the grasp of medicine. We should always consider a humanistic rather than a biomedical dimension when attempting to alleviate suffering. Patients need to be able to explain their ailments. You can’t undercut their claims. Their testimony should not be discredited in favor of laboratory results. Michel Foucault in “The Birth of the Clinic”, describes the dehumanizing effects when health professionals separate the patient’s body from their identity.
Neurodiversity proponent claim that they fall within the “normal” spectrum of neurological variability. In turn physicians point out to the increased prevalence of brain malformations and its association to seizures. Labels on one side, emotions on the other, the conversation is a disconnect. This is a confrontation between the hubris and the humanity of medicine.
Neurodiversity brings a moral view on autism. It provides a shocking picture about the way we should understand a condition, about the interpretation of science. In this regard, autism inscribes values and beliefs within medicine and society rather than the other way around. These are people deeply hurting that are speaking. In essence, the neurodiversity movement, as Bernard Rimland before them, has been an attempt to personalize medicine. Despite my disagreements in regards to research, treatment and even finding a cure for those truly handicapped by ASD, I need to acknowledge some of the positive aspects of the neurodiversity movement.
Hopefully the ongoing discussion will be empowering to its participants. The major problem within the autism community is not our differences of opinion but rather, how to sustain better/positive relationships between ourselves. Division leads to disengagement and lack of productivity. Blame does not solve the problem. We are all in this together. Clarity and consideration should allow us all to be part of a winning team.
One possible way to continue the dialogue is for those wishing to participate, to approach the problem, and their commentaries, from what they would consider to be the opposite or contrarian point of view. In this regard you would be acknowledging the other person’s way of thinking and feeling. Encourage others to clarify your thoughts and to see if you have understood them correctly. Avoid making direct criticisms. There is no competition to be right. The prize is not in talking but in active listening, in mindful attention. You can value another person’s feelings even if you disagree with their arguments. We have to make a commitment to bring the autism community together. You wouldn’t be reading this blog unless you cared.
Comments? Advice? Let me know your story.
Figure: A head-to-head confrontation with a bull would not be a wise thing. Bull-fighters or Matadores have learned that sometimes you have to let the object of your confrontation through in order to make a point.