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.
To provided the best resources to our autistic children’s is first, for me, in any conversation. By recognacing that autistics, neurodiverses or typicals share the same biophysical structure and also the same biophysical principle apply, can help to explain what cause autistics , neurodiverses or typicals, all of them share the same human structure.By using this basic biophysical principles already described by biologists , damages can be explain and a cause can be identify. Prevention could be introduced as part of this conversation maybe on a near future.To Care for our autistics and to prevent damages avoiding new autistics or neurodiverses and their comorbidities deserved to be included in this conversation.
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Its because neurodiversity exists in a vaccum without a consensus of what autism is & its cause people wander off into other avenues. When its properly defined biologically the appetite for these things will diminish.
One of the problems with a decentralized movement like neurodiversity is that they offer a moving target in any debate. What somebody claims to be neurodiversity is different from the claims of another proponent. Another difficulty is their pseudoscientific statements that are meant to be accepted as dogma, e.g.., being defined as the result of normal variability within the human genome. It seems that some neurodiversity advocates have a lot of imagination but have never read the medical literature. As always, thank you for your comment.
Thank you for writing this entry. As an adult with an ASD diagnosis and very low support needs, I often ponder upon how much of my experience is at all telling when compared to the experiences and needs of those at the severe end of the “spectrum”. After carefully considering some facts, I have come to the conclusion that the 2013 changes to the DSM may have ultimately made more damage than good. On the one hand, autistic individuals with lower support needs constantly see our diagnosis challenged (a diagnosis that is no means easy to access or come by), even to the point of being accused of “faking” our autism despite extensive evidence of our challenges in different areas of life when compared to the general non-autistic population. On the other hand, autistic individuals with higher support needs and serious challenges that considerably limit their ability to live independently and their families are bombarded with messages that either downplay or (worse) willingly ignore these challenges. I understand why these families are angry at proponents at neurodiversity. In addition, because of the identitarian bent this debate seems to have taken, with autism now being conceptualized not just as a “disorder” or even a “condition”, but as an “identity” (!!!!) things look much worse than they did a mere 8 years ago. While there seems to be increasing public awareness of autism, I am not sure this translates into adequately serving the needs of all the people included under the ASD label, whatever their needs and support level are. I believe professionals working in the field of autism / Aspergers starting with the APA have great responsibility in the current state of affairs. Diagnostic labels have a serious impact on the lives of real individuals, and even if the lumping together of Aspergers and ASD under the same label may have made sense from a diagnostic (i.e. procedural) point of view, the erasure of Aspergers as a diagnostic category may have done more harm than good. Thank you very much for your blog and research.
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