For Immediate Release [first published on August 17, 2011]
It has been quite some time since I made my last posting to this blog. Since then, I have experienced significant changes in my life. Most of them are related to The Echoing Practice, a Sufi meditation which I began developing just over a year ago. It has turned into a book. Several months ago, I expanded the meditation into an informal Sufi order, An Autistic Path. The order is not a part of the beautiful religion of Islam. Instead, it is a branch of The Asma Path.
Although The Asma Path is inspired by my personal understandings of the Baháʾí Faith, An Autistic Path is open to individuals from any, or from no, religion. Membership is only informal. If you think you are a member, you are one. By practicing the meditation, I discovered empathy for the first time in my life. I genuinely thought, over the first 54 years of my life, that I understood empathy, but I was confusing it with sympathy. Sympathy is feeling for people. Empathy, on the other hand, is feeling people.
Like most Autists, I am honest, sometimes to a fault. Because of my experiences with the meditation, I made a number of personal and inner discoveries which, sad to say, will cut me off from many, maybe most, people in the online Autistic community. I am not exaggerating at all:
An Autistic Path has become an entirely new Autistic movement. In it, aspects of both the social and medical models of disability are accepted. With the medical model, the emphasis is upon curing Autism. A caricature of the medical model is the twelve-step or “recovery” movement. As a self-help philosophy inspired by Alcoholics Anonymous®, this movement has medicalized the diversity of human experience, such as procrastination. According to the social model, however, the term, “disability,” refers to social oppression, not to human differences. By removing the oppression, the disability is eliminated.
Therefore, difference without injustice is only disability in part. That is to say, disability includes the oppression of individuals who are physically or psychologically or neurologically out of the ordinary. In my personal view, Autism is, for the most part, a difference of the heart. As a result of our uncommon brains, many of us have trouble interacting with others affectionately or empathetically. Although people, whether on or off the Autism spectrum, may be out of touch with their hearts, for Autists, this condition is devastating. Likewise, the self-discovery of an Autist’s heart can be revolutionary.
Those of us who have been particularly blessed to obtain doctoral degrees, such as Ph.D.s, are trained to be unusual. Since most Autists are unusual anyway, there is little surprise that many of us would receive higher educations. To most people, faithfulness to a particular way of looking at the world is seen as a virtue. In the academic world, the opposite is true. We academics or professors place a high value on regularly and carefully questioning our current assumptions. The thoughts I will express here are a result of this process of inquiry.
In 2007, I accepted, with lingering doubt, that differences between Autists and neurotypicals (neurologically typicals) are to be celebrated. Autists, like anyone else, should be assisted when needed, but a cure was, perhaps, out of the question. “Unity in Neurodiversity” (neurological diversity) became the motto for An Autistic Path. These days, however, if someone asked me whether I accepted neurodiversity, I would respond, “Neurodiversity is a fact, not a belief system. Each of us is neurologically different. Therefore, no human category, people with similar neurological qualities, should be oppressed.”
With the traumas of my childhood nagging at me, I was never a true believer in neurodiversity. I suspect that I talked myself into it. When An Autistic Practice first opened my heart, and extended moments of empathy became regular events in my life, one of my first thoughts was: Perhaps now, some others may also develop into empathetic Autists. However, it dawned on me sometime later: Social difficulties, frequently interpreted as problems with empathy, are a major defining characteristic of Autism spectrum disorders. My original conclusion did not make sense, and I had to be honest about it.
I jumped on the anti-cure bandwagon. It was, as a sociologist, appealing, but I now recognize that my decision was made in haste. ADHDers (individuals with attention deficit hyperactivity disorder) are, like Autists, an oppressed minority. Yet, to the best of my knowledge, there is no ADHD anti-cure movement. I swallowed the common assumption, in the mainstream Autistic activist community, that Autism should be seen or even privileged as a dimension of neurodiversity, until I became more in touch with my heart. Seeing no other options, in August, 2011, I rejected the view that Autism should not be cured.
Comparing the lack of empathy which is frequently observed on the Autism spectrum with the delusions experienced by schizophrenics would be foolish. Yet, neither, in my view, is necessarily less devastating than the other. In the modern, secular societies of the West, a life without significant empathy may appear, on the surface, to be less troublesome than paranoid delusions. Spiritually, however, the absence of empathy is a personal disaster. I also feel, inside my heart, that ever-increasing rates of Autism, depriving individuals of our empathy, are among the most tragic problems of our time.
In the best of possible worlds, no human souls would ever be disabled in their empathy. Nevertheless, being an Autist, with the right perspective, can be treated much like the other tests and struggles of life. If responded to wisely, Autism can become an opportunity for spiritual development. Unfortunately, by defining this Autistic lack of empathy as acceptable human neurodiversity, Autism, the spiritual test, has been turned into Autism, the moral ideal. To some Autistic individuals, which partially and indecisively included me at one time, Autism is considered to be no more than a different way of being.
The name of the most popular Autistic support website, Wrong Planet, expresses some of my concerns. Many Autists experience an ongoing sensation of inward otherness. To me, it has sometimes been a bit like constantly being lost. In my opinion, the routines or ritualized behaviors, common among Autists, are coping mechanisms. The basic issue, as I see it, concerns the spiritual heart or empathy or dialogue. In other words, the problem is relational. Quite literally, I could not feel love. Well, sometimes I thought I felt it, but the experience was almost entirely foreign to me. Somehow, it was blocked.
I have always loved Autistic ritalized behavior. For me, it is very much like ecstatic meditation. However, the vast majority of what I experienced, during my childhood, as Autism, I did not like. No matter how hard I tried, I could not stop behaving in an extraordinarily odd manner. My discomfort had little to do with an absence of neurodiversity. The major issues in my life were neurological. They were not cultural. Even the highest degree of social acceptance and tolerance would not have resolved my problems with interpersonal communication. The stuttering problem, just by itself, continuously tormented me.
Cure-be, within the Autistic community, is a disparaging term, an insult, for someone who wishes to see Autism cured. Perhaps I have now become one. Clearly, I do not wish to see anyone, like myself, go through most of his life, confusing empathy with sympathy. If I am a cure-be, however, I am not an ordinary one. Autism frequently includes many desirable qualities, such as detailed focus, visual memory, and long-term dedication to a subject. Consequently, cures for Autism would, ideally, be selective, not absolute. For spiritual healing, devotional meditation might be a complementary treatment.
Cures, or treatments, must, in my view, be rooted within solid scientific research, not in pseudoscience (make-believe science) or anecdotal data (personal testimonies) or medical quackery. Most currently available approaches, including an avoidance of vaccinations and various dietary restrictions, have little or no support from peer-reviewed journals. Perhaps, however, the major problem with present-day Autism therapies is that there are so many of them. In basic terms, if one, in particular, worked well for most people, clinics using any of the other treatments would be rapidly driven out of business.
The negative views I have of medical quackery come partially from being a professor, but that is not the major reason. My well-meaning parents, God bless their souls, brought me to a local clinic which practiced orthomolecular medicine. In addition to the usual medications, the clinic’s psychiatrists prescribed huge dosages of vitamins (“megavitamins”) for me. Even as a ninth grader, in my middle teens, I was extremely skeptical about this approach. Fortunately, my previous child psychiatrist convinced my mother, over the phone, that orthomolecular medicine was not supported by the research data.
Autistic liberation must, I now believe, take place on two fronts: First, efforts to develop better treatments, even targeted cures, for Autism must continue with full force. With a dear Autistic father, I should always have known, better than most people, the importance of finding scientific medical cures. Anyway, he is deceased, and I cannot betray him. Second, we Autists, as uncommonly odd individuals, are often bullied. Due to a lack of social skills, we also have higher-than-average unemployment rates. Protections from all forms of oppression or discrimination, including social and economic, are crucial.
None of the above statements are meant to imply that I hold negative views of myself and of others as Autists. I definitely do not, but I also need to be honest with myself and with others I have known in the Autistic community. For me, Autism is among my personal qualities. Much of my individuality is based upon Autism. Without it, I would not be the person who I am today. Autism has shaped me, and I appreciate the man that I have now become, especially since I started meditating. Nevertheless, I do not wish to see others, due to similar problems with empathy, struggle to survive in an alien universe.
Within the Autistic community, there has been a longstanding debate on “person-first” versus “Autist-first” language. In person-first language, the individual has Autism. With Autist-first language, the individual is an Autist. The supporters of person-first language argue against labeling the individual as the disability. Advocates of Autist-first language, pointing to such unquestioned terms as “right-handed person,” assert that objections to Autist-first language are, in fact, objections to Autism. In my opinion, both of these descriptions are valid: I am an Autist because I have Autism or Autistic qualities.
From my observations, the rejection of person-first language is usually based upon the assumption that Autism is a real thing. Autism, according to that view, is a single “essence,” a universal core of being, which appears in every Autist. In academic terms, this approach, which I reject, is referred to by the terms, essentialism and realism. Instead, I believe that essences are the names which are assigned, by God or by people, to individual unities of qualities. There are no universal essences. Autism is a name for the qualities of particular human beings.
Over these many years, I have adapted to Autism. It belongs to my inherited character. For someone to take my Autism away from me now would rob me of an important dimension of my individuality, especially my dogged determinism and way of thinking. I would, in effect, become a stranger to myself. Today, I love being an Autist. That is why, in my opinion, any cure should take place either before birth (prenatally) or very soon afterwards. My own willingness to adopt the anti-cure philosophy for a few years was, I think, the result of this basic self-realization: Not being an Autist is unimaginable to me.
The mainstream Autistic activist movement, represented by organizations such as The Autistic Self Advocacy Network (ASAN) and The Global and Regional Asperger’s Syndrome Partnership (GRASP), does a great deal of excellent work for Autists. When my childhood diagnosis was clarified in 2007, placing me on the Autism spectrum, I immediately plowed through the Internet and found the mainstream movement. Breaking away has, emotionally, been difficult. After a lifetime of simply being “weird,” to be told that, instead, I was just neurodiverse (neurologically diverse) was a symphony to my ears.
Mark A. Foster, Ph.D.