Interpersonal communication molds our way of thinking. Transformative changes come about because in a conversation people trust their friends. After all, don’t friends have your best interests in mind? Indeed, information sharing among friends is relevant and usually targets common interests. I see a reflection of our personal identities in the information that we share with our friends. Small talk among friends may serve to take a breather and help you to unwind. Talking about our common interests may ignite our passion for a subject. Still, there are aspects about our lives that we do not tend to share with other people, whether they be friends or not. Issues regarding toilet training, eye gauging, temper tantrums, seizures, or your anxiety medications will remain family secrets. It is hard to share such experiences without feeling distressed or wakening negative emotions. For many of us sadness is something that remains bottled inside.
Knowing of the hardships that some autistics must endure does not convey the same sense of wonder and awe purported in stories of savant abilities. Feats of remarkable memory, mathematical skills and musical prodigies almost always find a receptive audience. Steve Silberman in his book Neurotribes easily found a credulous readership by delivering a world of fantasy regarding autism. People are prone to accept illusory narratives when they peddle positive emotions and drive transcendence. However, to be factual, a positive message should be generalizable. By discounting the trials of those severely affected individuals within the spectrum, Silberman and neurodiversity proponents circumscribed their opinion to a stereotyped subgroup of high functioning autistic individuals. For those at the severe end of the spectrum such a generalization minimizes their plight and is considered offensive.
Some neurodiversity proponents have gained influence by being the loudest voices within social platforms. Curiously, they may have no other distinguishing attributes except for being the Kim Kardashians of social networks for autism. Life experiences are important in providing a personal account of your own circumstances; however, a discourse about treatment options, research, etiology, and evidence based facts requires a certain degree of education. Given the lack of qualifications of some participants in the neurodiversity debate, the message that they peddle is usually sold as being more important than the messenger. Indeed, one contributor to the debate seems to have a direct connection between the top of his head and the tip of his tongue. The unfortunate result being that few practical ideas come out of the debate; each side digging themselves deeper in their own way of thinking.
If autism is defined as a spectrum and severity varies greatly among patients, it stands to reason that some individuals may be more severely affected than others. Not every life story of an autistic individual can be described as a fairy tale. Not all of life’s problems can be solved with accommodations. Medical treatment, even if symptomatic, often improves the quality of life of patients. Educational and behavioral options may be inconsequential to some in the autism spectrum but life changing for others. My late age realization is that, in order to move forwards, many of our goals should be identity-based. Although I do not believe in labels, changes to our diagnostic manual (DSM5, 2013) did not take into consideration how patients identified with a particular diagnosis (i.e., Asperger vs. autism). It is clear that we need a better customized classification system with appropriate input from stakeholders.
The plight of severely affected individuals is complex and stands to gain from the testimony of people offering different perspectives and experiences. Some organizations, like AutismSpeaks, have sorely relinquished their duty as patient advocates. They sidestep debates in order to be agreeable with any prevailing majority. I call AutismSpeaks a “weathervane organization” as its scientific backbone changes with whosever public voice is heard the loudest. It is for this reason that I applaud the efforts of the National Council on Severe Autism. They provide a forum to educate the public about severe autism and the need for special attention and services. They also provide a platform for serious discourse regarding gaps in policy and services for this patient population. Each personal story that they publish is a vessel of information with a message inside. I urge the readers of cortical chauvinism to become involved in this organization and follow their useful articles.