Through Different Eyes: How People with Autism Experience the World
Biology 202
2003 First Web Paper
On Serendip
Through Different Eyes: How People with Autism Experience the World
Alanna Albano
Many of us have heard of the neurological disorder called autism, and
have a general sense of what the term "autism" means and all of the
typical behaviors that belong in its category. Yet, I must question how
many of us out there who do take an interest in autism really
understand how having this disorder can totally distort one's
perception of what one experiences in the world. A person with autism
senses things differently then we normally do, and also responds to
them in other ways – what we would call "abnormal behaviors". Why is
this so? According to scientists, MRI research studies have shown that
the brains of autistic individuals have particular abnormalities in the
cerebellum, brain stem, hippocampus, amygdala, the limbic system, and
frontal cortex (7).
This provides substantial evidence that autistic behaviors must be in
some way caused by these abnormalities. The problem is that we do not
know exactly how or why these abnormalities cause someone with autism
to experience the world differently than we do. This underlying issue
of autism has always greatly intrigued me, and yet the topic of sensory
integrative dysfunction in autism has been overlooked for many years.
Articles and documents addressing this feature of autism have begun to
appear only recently. While conducting research for my paper, I found
it a challenge to find articles that specifically talked about this
topic that I desired so much to learn about. Thus, the ultimate goal of
my discussion is to reveal a misunderstood, hidden world – the
complicated sensory dysfunctions that underlie autistic spectrum
disorder.
What have we found out so far about how people
with autism experience the world? All the information that we do know
has been pieced together from observations of autistic behaviors, and
recently, the personal accounts of high-functioning autistic persons.
Dr. Temple Grandin, a professor at Colorado State University who has
autism, has been able to provide us with an in-depth look into the
sensory world of autism: "I pulled away when people tried to hug me,
because being touched sent an overwhelming tidal wave of stimulation
through my body...when noise and sensory over-stimulation became too
intense, I was able to shut off my hearing and retreat into my own
world" (7).
Tito Mukhopadhyay, a 14 year old boy from India with severe autism, has
also been able to give us a somewhat clearer picture of what he
experiences: "I am calming myself. My senses are so disconnected, I
lose my body. So I flap [my hands]. If I don't do this, I feel
scattered and anxious...I hardly realized that I had a body...I needed
constant movement, which made me get the feeling of my body" (2).
These
accounts have provided a special glimpse into the sensory disorders
that accompany autism. It is fascinating to see how Dr. Grandin and
Tito are living examples of how the autistic person perceives the
world. At first glance, the two testimonies seem very much alike to me.
Both of these autistic persons' nervous systems are constantly
overwhelmed by the sensory input that their bodies receive. However, a
much closer look reveals to me the key differences between the two. Dr.
Grandin is a high-functioning autistic person whose nervous system
receives too much sensory input. Her brain is painfully overwhelmed by
the flood of information, and in response to this she withdraws from
the source of input by "shutting off" one or more of her senses in a
desperate attempt to find relief. Tito, on the other hand, is a
low-functioning autistic person who is amazingly still able to
communicate what he is feeling to the rest of the world. According to
his testimony, Tito's nervous system actually receives so little input
that he cannot sense a connection with his own body. His hand flapping
response is his attempt to calm himself and gain a sense of his body's
existence. The comparison between Tito and Dr. Grandin demonstrates an
unmistakable yet perplexing truth: no two autistic people are alike.
Although they may share common behaviors, these behaviors will appear
in all sorts of combinations and will vary in levels of intensity. It
is my opinion that this observed irregular pattern of autistic
behaviors is partly what has contributed to its being ignored for so
long. I find it unfortunate that researchers in the past had probably
cast autism sensory issues aside simply because it was just too
baffling.
Observed autistic behaviors such as hand
flapping, tapping and /or mouthing objects, toe walking, rocking back
and forth, head banging, and vocalizing, along with the testimonies of
various autistic individuals, have led researchers to believe that
those with autism are either severely over-sensitive, under-sensitive,
or both to outside sensory stimuli. Autistic persons have said that
they have visual distortions and impaired depth perception of their
environment, noxious sensations, and auditory, proprioceptive, tactile,
and kinesthetic impairments (1).
This is evidence that their nervous systems do not process sensory
information correctly, so they feel overwhelmed by the abundance or
lack of sensory information that their nervous system is receiving. In
response to such confusing input, they exhibit abnormal behaviors in an
attempt to either reduce the amount of input their nervous system is
receiving or increase it. Such behaviors like tapping or vocalizing
allow them to know where their "boundaries" exist in their environment,
since they cannot see the world the same way we do (4).
The
distortions in sensory perception have been linked to certain brain
abnormalities discovered in the brain autopsies and MRI images of
different people with autism. Normally, our internal "brain maps" give
us a sense of our bodies and involve the regions of the brain that deal
with the senses and movement. MRI images depict that autistic persons
have scrambled brain maps (2).
In other words, the information connections for sensory functions still
exist, but they are located in the wrong parts of the brain. For
example, face-recognition areas in the brain of autistic persons have
actually been found in the frontal lobes, which is quite contrary to
the specialized location of face-recognition in the normal brain (2).
Autistic brains have been found to be larger than average, and they
contain an incredible amount of electrical discharges in the hearing
regions. The cortical columns of the brain contain a much higher amount
of cells than the norm, and also make extra connections between
neurons. This excess circuitry is what is believed to cause problems in
sensory function (10).
Abnormalities found in the brain stem, cerebellum, hippocampus,
amygdala, and the limbic system may also explain many sensory
processing problems. For example, the amydala, the emotion center of
the brain, is underdeveloped, as well as the hippocampus. The
hippocampus controls sensory input as well as learning and memory, so
immature growth in this region of the brain would most definitely
explain some common autistic behaviors. In the frontal cortex, it has
been discovered that there is a significant lack of Purkinje cells. How
this abnormality relates to neurodevelopment and mental function is
still unclear to researchers (9).
As
of today, researchers recognize the common pattern of autistic
behaviors, and they have located what and where the abnormalities in
the brain are. They have agreed that these abnormalities may be
contributing to the behaviors often observed in autism, but exactly how
and why is still a widely debated topic. Various researchers have come
up with their own specific interpretations of the connections between
the autistic brain and autistic behavior. For example, in terms of
visual perception, researchers have theorized as to whether autistic
persons really do have severe visual distortions of what they see, even
though they are by no means blind. Many have debated how and why some
autistic persons will rely on touching objects to recognize the
identity and location of objects despite their apparent ability to see.
We know that parts of the autistic brain that control vision may be
under or over-developed, but it is not understood how sometimes
autistic persons may be able to see just fine, while at other times
they behave as if they were truly blind. From what I have read, it
seems that some professionals question if these visual experiences and
such are truly caused by physiological problems in the brain, or if
they are just mere hallucinations. The second argument seems highly
unlikely to me when so many apparent abnormalities in the autistic
brain have been detected. It only makes sense that the visual
disturbances would be attributed to something physiological, not
psychological.
Unfortunately, there has also been an
overwhelming reluctance by professionals to rely on the testimonies of
autistic persons who are capable of describing their condition. I was
rather shocked to come upon this fact while conducting my research. I
do not understand why they would refuse to listen to the ones who
suffer from the disorder, because they are the only ones who can
actually explain what it means to live in the world of autism. Do these
researchers believe that the words of a mentally disabled individual
are not plausible? Such negative attitudes displayed towards society's
mentally disabled have only delayed in the quest to solve the baffling
puzzle of autism.
In conclusion, we are left with
more questions than before, and no definite answers. I have explained
the complications surrounding sensory integrative dysfunction in
autism, hoping to make others aware of how much it affects those living
with autistic spectrum disorder. Autistic people will respond to a lack
or abundance of sensory input by flapping hands, shutting off certain
senses, and doing other abnormal behaviors. Several abnormalities have
been found in the autistic brain, but many researchers debate what the
connections are between these abnormalities and autistic behavior.
These debates, as well as disfavorable attitudes towards the mentally
disabled, have only slowed our progress in the search for answers. I
can only hope that in the future improved research studies and
technology, as well as increased awareness and compassion among
society, will have helped to improve our knowledge and understanding of
sensory dysfunctions in autism.
Bibliography and Additional Links:
1) Can Foundation Page,A Case Study of Distorted Visual Perception in Autism
2) Autism Today Page, A Boy, a Mother and a Rare Map of Autism's World
3) Autism Today Page, Different Sensory Experiences/Worlds
4) Autism Today Page, Possible Visual Experiences in Autism
5) Autism Today Page, Reconstruction of the Sensory World of Autism
6) Autism Today Page, Auditory Processing Problems in Autism
7) Autism Info Page, My Experiences with Visual Thinking Sensory Problems and Communication Disorders
8) Autism Today Page, An Inside View of Autism
9) Pub Med Page, Nicotinic Receptor Abnormalities in the Cerebellar Cortex in Autism
10) Pub Med Page,
Stereological Evidence of Abnormal Cortical Organization in Individuals with Autism
11) Autism and Related Conditions Page, Sensory and Motor Disorders
12) National Center for Biotechnology Information Page, Neurofunctional Mechanisms in Autism
13) Autism Today Page, Sensory Disorder
Comments made prior to 2007
I think that people using the words mentally disabled contribute to the
fact that researchers tend not to trust the descriptions of autistic
individuals when discussing their perceptual experiences.
I am a high functioning autistic person and I can assure you that I am
in no way mentally disabled. Mentally different, yes. The only thing
that disables me is the attitude, including inappropriate language, of
so called normal people.
I take great offense to being referred to as mentally disabled. It is inaccurate and untrue ... Gillian Graham, 31 May 2006
People with the gift of Autism being labeled at all!
My son is almost 18 years old. He is a high school drop out. He dropped out of school on his 17th birthday because that is the legal age that a student can make this choice (without getting the parents in trouble), here in the state of Texas. His reasons, and I quote... "Because your teachers are monotonous and have no real connection to students or passion for the materials they are presenting. Because your teachers are more concerned with discipline and fear, than education and respect. Because your teachers place no value on individuality, and when intelligence and curiosity interfere with the lesson plan, their worlds come tumbling down. Because I can see their weakness and insecurity, and I am not afraid of it anymore--they are wasting my time."
This sounds so incredibly arrogant, but this is my son, Mitch. This is who he has been since the day I took him, at 8 years old, into a meeting with his principal and he told her, "Margaret, (addressing her by first name) It's not my fault I'm smarter than you." Quite honestly, he was.
Having an Autistic child is difficult. You spend the majority of their childhood trying to figure out what's wrong with them. Why aren't they like your other children? Did you do something wrong? Why is your child unhappy? Why does your child seem to dislike you and everyone else? Why does this child, who you know is incredibly smart, do so poorly in school? Why doesn't your child have any friends? Why is your child so emotionless? Did something happen to him/her that you don't know about?
I could go on and on. It is a hellish nightmare. What makes it SO MUCH WORSE is the countless relatives, neighbors, educators, counselors, and other "professionals" who draw assumptions and, almost always, the gaze of blame turns to you, the parent.
There is absolutely NOTHING wrong with MY son. That is the conclusion I have come to after almost 18 years. NOTHING. He is a neat human being. His behavior is not the "norm." His ideas are big. His love and emotion runs deep, but it's there. He's narcissistic. He walks to the beat of his own drum. His volume knob is simply an "on/off" switch. There is no "inside voice." There is simply silence or LOUD. For my son, Silence = sadness or frustration. LOUD = happy and comfortable. I've grown to appreciate the yelling.
My son tells me that autistic children that don't talk, can talk; they just choose not to. He says that they are able to communicate in other ways, but we (normal people) can't see it. He says we choose not too. When he was in an autistic educational setting, he was one of the higher functioning students in the classroom. He said that he could tell exactly what the "non-speakers" wanted and how they were feeling just by watching their eye movements and body gestures. He says they communicate just fine. He also says that if we "normal people" would pay closer attention and stop worrying about what is wrong with them, we would be able to see too. He also says that they would probably talk to us.
He was invited to give a presentation at St. Edward's University in Austin Tx a few years back. His presentation was SUPPOSED to be on disability awareness. He put his little powerpoint up on the screen that was titled "Autism...Disability." But then an amazing thing happened. The "DIS" disappeared, and the audience (made up of parents, teachers, counselors, psychologists, psychiatrists, clinicians, etc.) was left with the word "Ability." (There was some chair shifting and voice clearing--as one could well imagine).
His entire presentation focuses on why he is completely normal...and what's wrong with the rest of the world? He draws on the fact that it is speculated that Einstein may have been Autistic. His closing arguement was a question posed to the audience. "What if a doctor had come to Einstein's parents when he was young with "magic pills" or "breakthrough therapies that could cure him of this horrible affliction? What if the parents had accepted the treatment and it did in fact "cure" Einstein? Would Einstein still be a household name and the intellectual powerhouse he is remembered as today?"
Pretty quiet audience when he was done...but, more importantly, it changed my perception of my son....forever.
I wouldn't attempt to assume that everyone has the same experience, but for me and my family, a simple change in perspective changed our lives...and his. We have made sense of his abilities and talents, and embraced the differences that make him unique.
people with autism being labled as "mentally disabled"
As the mother of 25 year old son with autism, I have personally experienced the battle (I mean that literally not figuratively!)of having people label my son as mentally disabled. I think it was easier for the people who were responsible for his education in public school to lable him rather than accept that he percieved things differently therefore needed things explained in a different fashion because they did not understand that he learned in a different fashion. Now at 25 he is an encyclopedia of information which he loves to share, manages his own finances, is politically active and loves to travel. We do have to deal with behavior issues that are stimulated by noises. We keep a supply of earplugs on hand and the Ipod is our friend! I am glad we took it upon ourselves to give our child every opportunity to excell in all that he could. I tell the parents of other children, don't let someone else tell you what your child can or cannot do. Let them grow and encourage them in all things.
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