Many years ago, circa 2010, I had the opportunity of listening to a lecture by Elyn Saks, a professor of law and psychiatry from the University of Southern California. The lecture was meant to publicize her experiences with schizophrenia as detailed in the best-selling book, The Center Cannot Hold. The fact that after the lecture I was able to socialize with Dr. Saks and her husband has been one of my most cherished memories.
In many ways I draw a parallelism between Dr. Saks’ experiences and those recounted by some autistic individuals. Indeed, some of my patients have described feeling disjointed, almost as if lacking control over their bodies. This feeling has been confusing and difficult to explain. For some, relief was obtained by deep pressure therapy as in the case of a weighed jacket, blanket or water (hydrotherapy). I have also found that some of these patients obtain relief by avoiding open spaces or by being able to watch themselves in a mirror. These feelings remind me of a medical condition by the name of Balint syndrome. This is a rare disorder often seen following a stroke. In Balint syndrome patients have difficulties in recognizing objects when they are presented simultaneously but not when they are presented individually. The syndrome provides for awkward sensations as when the patient struggles to figure out where a wall ends or when attempting to locate the cutlery on a dining room table. Indeed, although patients with Balint’s syndrome are attentive, they are perplexed by an environment that they seemingly fail to understand. This causes the patient to become anxious, fearful, and to strive for continuity in routines.
Tito Mukhopadhyay is a gifted poet who has described many of his experiences as an autistic person. In his book, How can I talk if my lips don’t move?, Tito relates his problems in learning to play badminton. Forcing himself to pay simultaneous attention to different parts of his body, the ball, and the immediate environment would make him feel dizzy. The awkward sensation would invariably prompt him to move indoors to the comfort of familiar surroundings. Sometimes having mirrors around him would help to calm him down.
Although sharing some of the symptoms described above, Elyn Saks was given a diagnosis of schizophrenia and told of the “grave” prognosis brought about by the condition. Indeed, she spent hundreds of days institutionalized, many times being physically restrained 20 hours per day. During her psychotic breakdowns she had suicidal thoughts but fortunately did not act on them. She saw herself as an evil person, somebody who had killed thousands of people with her thoughts alone. Body sensations were awkward, feeling like a robot made of metal parts rather than muscles, blood, and gut. Her hallucinations were described as nightmares experienced while fully awake. Her thought pattern was characterized by loose associations and words which jumbled up together as a word salad. This was not a split personality but a shattered one.
Dr. Saks saw herself as being different, some sort of alien, not even a human being. This was a dissociative experience which prevented her from conceptualizing how other people saw her. What happened to those around her was part of a movie, not a part of her life. Still, she felt ashamed, the owner of a demoralizing diagnosis that limited her ability to lead a full life.
With all of her symptoms would she opt for a cure, if one was available? Definitely. If possible, would she take back all of her experiences with her condition? No. Her disorder is a part of whom she is. Dr. Saks often spouses that she is pro-psychiatry but anti-force (she does not believe in physical restraints). Indeed, Dr. Saks talks about investing more resources into research. The better we understand mental illnesses the better treatment we can provide. We need to portray people suffering from mental disorders with all of the richness of their lives rather than their diagnosis. The humanity that we all share is more important than the mental illness we may not (Elyn Saks, 2019).
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Casanova MF. The World: a confusing and intimidating environment for autistic individuals. Cortical Chauvinism, 2019.