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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.
Sources:
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.
http://www.ncbi.nlm.nih.gov/pubmed/17367287
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
Comments
What IS it like inside a different brain?
Interesting resonances to a variety of themes arising in the course this year. Everyone has a "unique mind"? Does it actually follow though that none of us will ever "know any conciousness beyond that of [our own] brain"? And some other intriguing issues to explore further.
It might be interesting to compare some of these thoughts to those of people, like Temple Grandin and others, who write about autistic experience from the inside.