Autism's Possible Implications for the Mind and Brain
Autism affects one in 166 children born in the United States and has doubled in prevalence over the past decade. This disorder has tragic repercussions for the children diagnosed with it and remains a mystery without a known cure. My autistic cousin Katie lives daily with the weight of this disorder and I intend to explore in this paper the repercussions it holds for many facets of her life.
As defined by the World Health Organization, Autism is "a type of pervasive developmental disorder that is defined by: (a) the presence of abnormal or impaired development that is manifest before the age of three years, and (b) the characteristic type of abnormal functioning in all the three areas of psychopathology: reciprocal social interaction, communication, and restricted, stereotyped, repetitive behavior. In addition to these specific diagnostic features, a range of other nonspecific problems is common, such as phobias, sleeping and eating disturbances, temper tantrums, and (self-directed) aggression (1)." "Most recent reviews estimate a prevalence of one to two cases per 1,000 people for autism, and about six per 1,000 for ASD, with ASD averaging a 4.3:1 male-to-female ratio. The number of people known to have autism has increased dramatically since the 1980s, at least partly due to changes in diagnostic practice; the question of whether actual prevalence has increased is unresolved (2.)" Whether or not the prevalence is correct, it is abundantly clear that research towards a cure or an intermediate understanding of the cause of this disorder must be a global imperative.
My Uncle Brent and Aunt Claudia are in their early fifties and have enjoyed successful careers and lives of travel for the past twenty-five years. They were unable to have children of their own so five years ago they entered the long and emotionally taxing process of adoption. They began in the Russian market, but all of the children whose tapes arrived were screened and found to have fetal alcohol syndrome. Two other markets were not accepting any more prospective parents, so at last my uncle and aunt turned to China. After two years of negotiations and working with the Chinese government, they went along with eight other couples to the Xuedong province of China to a tiny rural orphanage and met their five month-old daughter. They named her Katie and after the handover were immediately hustled back to the airport and the United States. Claudia had a baby shower, decorated her room and had Katie's name placed on lists for several area private schools.
Things were idyllic until Katie began to walk. Her motor skills were on track; however she responded to little, grew frustrated easily and threw frequent tantrums including hitting herself repeatedly. I babysat for her when she was about twelve months old and went to her parents with the concern that my cousin didn't pay any attention to me unless I spoke directly into her face. When she hadn't started forming words or talking, Brent and Claudia went to a series of specialists and received the same diagnosis of Autism. They were initially devastated, but now at the age of three my cousin is getting the finest help possible from two people who are committed to her fully and are determined to give Katie as healthy a life as possible.
Katie's story is not uncommon. Brent and Claudia kept in touch with some of the other couples who accompanied them to China and discovered that each child had some variation of sensory integration disorder, although Katie's was by far the most severe. There are hundreds of support web pages for parents of adopted children who are facing a variety of disabilities and challenges with their children's health. In my research I focused on Katie's case specifically and found some possibilities as to why her case was so much more severe and why cases of Autism are so much higher in orphanage situations than in traditional infant upbringings.
After much communication with the orphanage, Brent and Claudia learned about their daughter's experience. Like in so many other orphanages, the infants in Katie's facility were left in cribs at all hours of the day with bottles propped against the bars. The children received little physical human contact apart from having their diapers changed by nurses. Brent and Claudia were told that Katie was the ideal child to care for, meaning that she was quiet and rarely fussed or sought additional attention. Her neighbor Grace on the other hand was very loud and fussy and received a lot of attention from nurses in an effort to calm her down. Brent and Claudia are in touch with Grace's parents and she has recovered fully from any health issues and is functioning normally.
Katie's neglect in the orphanage meant that her brain never responded to system mistakes because she had no opportunity to experiment. She did not develop the crying baby hypothesis (or any other essential associations for that matter) and thus had no feedback from her caregivers and no sensory stimulation. Her summaries of observations were extremely limited. She was not given any learning toys to play with and her only visual stimulation came from the same crib in the same room with the same sounds and the same interaction on a daily basis. This sensory and social deprivation can cause autistic-like behaviors in non-genetically autistic children; this is often referred to as Institutional Autism and can usually be reversed once the child is removed from the environment (3). As we discussed in class, an action when talking about the nervous system is defined as a pattern of activity. Katie did not develop patterns of activity so the nervous system had no source of reference for response (unlike Christopher Reeve's foot that had reacted that way so many times before.) Unfortunately Katie's disorder is genetic but the orphanage conditions irreversibly increased the severity of her Autism. In being the so-called ideal child to care for, my cousin unknowingly debilitated her development and perhaps her personhood.
My first analysis was of the equivalence between Katie's nervous system and her behavior as informed by her development. In class we established that the nervous system is indeed a material object but were still juggling the mind-body duality. If mind is one with the nervous system, what are the consequences for Katie? If input boxes were not formed does that mean that her outputs are limited as well? Could autism be like synesthesia where her inputs and outputs have gone to completely different places than a person’s without autism? And do action potentials within the nervous system feed off of only what has been experienced or rather what has been in her brain since birth- and is the nervous system's connectivity limited as well?
I researched this and could not find any reputable sources or data beyond input-independent motor neuron action potentials so I will do my best to answer this based on our discussion in class. As stated in the above definition, Katie's neurological development is indeed impaired as will be her psychopathological developments. However, I think that like so many other people with Autism or Asberger's she will have a unique mind that has the potential to affect a number of given fields and populations. It is clear that Katie's outputs are limited, but limited by normal standards and could for her mean life beyond disability. The "switchboard" effect of different outputs in response to inputs may be worth researching. I came across a documented interview with Professor Simon Baron-Cohen, Director of the autism research center. He discusses both autism and synesthesia separately, but the parallels between the two are suggested as well as possible gender-related differences in autistic development (4). And as for action potentials we have already seen that the nervous system can function independent of any input whatsoever, which gives us hope for her further development despite initially limited connectivity.
When considering Emily Dickinson's idea of the brain encompassing and creating all aspects of consciousness, it is important to note that Katie has never known and never will know any consciousness beyond that of her own Autistic brain. As we postulated in class, the sky is a product of the brain, "mother" is a product of the brain, and also identity/ personhood is a product of the brain. So Katie's brain identifies and creates for her Claudia and Brent, the sky and her own self identity. Her personhood from my perspective is not as complete as my own, but then again I may have limited consciousness of my identity and its relation to my environment in comparison.
I may never be able to fully communicate with Katie nor comprehend her conscious thought. However, I hope that one day science can provide through several gathered summaries of observations the ability to make our reality more accessibly for her. Katie's brain is also wider than the sky and I indeed believe that she has the capacity for an experience equal to or wholly fuller than my own.
1. World Health Organization (2006). "F84. Pervasive developmental disorders", International Statistical Classification of Diseases and Related Health Problems, 10th ed. http://who.int/classifications/apps/icd/icd10online/?gf80.htm+f840
2. Newschaffer CJ, Croen LA, Daniels J et al. (2007). "The epidemiology of autism spectrum disorders". Annu Rev Public Health 28: 235–58.
3.Gindis, Boris PhD. "The Second Glance at Institutional Autism in Internationally Adopted Children." International Adoption Articles Directory. (2002) <http://www.adoptionarticlesdirectory.com/Article/The-second-glance-at-institutional-autism-in-internationally-adopted-children/81>
4. Baron Cohen, Simon. Autism and Synesthesia. The Naked Scientists: Science Interviews. March 2005. http://www.thenakedscientists.com/HTML/content/interviews/interview/514