Autism and Anthropology – A reflection

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What is Autism?

              Before we dive into the ethnography let us explore what autism is. Autism is a neurodevelopmental disorder where social interaction and responding to the environment the way society demands is difficult in varying forms and levels (most are nonverbal). One way autistic people cope is through restricted and repetitive behaviors like rocking or flapping one’s hands as a form of self-regulatory behavior.

Thus it makes for an interesting ethnographic study as it entails a completely new form of culture, social requirements, linguistic anthropology, and even biological anthropology than that we’re used to with people without the disorder. In my study, we will explore the way the disorder has its own domain, its implications on the individual, the way the two groups interact and the core purpose and proposal of my study, which is the completely different form of anthropology that exists within and surrounding those with autism.

 

The Beginning of the Interview

After the introduction of what autism is, I began my interview with an Autism Specialist who works with autistic children at the very beginning, starting from the initial interaction between the parents and the child who presents signs of autism. The Autism Specialist informed me that during their first visit, the parents generally have no idea that their child has autism. Their complaints begin with describing the issues their child has, the inability to sit still or make eye contact, for example. Initial assumptions lean more towards mental retardation.

The next complaint and the biggest concern is the diagnosis which is accompanied by denial in most cases stemming from the fact that they do not want a “label” on their child pointing towards action or thoughts concerning with a branch of social anthropology where what the community will think clouds their better judgment and rather than being concerned about the wellbeing of their child, they are possessed and end up taking a counterproductive measure of convincing themselves that a certain behavior from an individual is more essential than coming to terms with the disorder itself while simultaneously convincing themselves that this is the path to recovery. This manifests as ignoring the severity of the signs. They tell the Autism Specialist that it’s not too intense, that the child just avoids eye contact “every now and then.” They don’t view this as a problem and pretend that there’s nothing wrong. This delays the diagnosis.

  

The Diagnosis of Autism

              For assessment purposes, the child is taken to the therapy room to be marked against a severity index and most of the time it’s much more than what the parents describe. When the child is first taken for assessment, the parents insist that they should be present in the room during the assessment and often interfere with it by taking the tools of measure from the professionals and furthering their case of denial which is another manifestation of their fear of the push of social norms and it is difficult to get the parents out of this phase. Anthropologically, it can be said that this is the first new form of anthropological interaction between the two groups per se, the denial, and fear, rooted in the branch of social anthropology as mentioned in the previous paragraph.

 

Linguistic Anthropology

              It can be said that linguistic anthropology is not only the study of language but the study and application of different forms of communications between parties and so I make my case that depending on the specific needs of every child, the professionals take the necessary steps to form trust over time with the child with ever modifying forms of communication that every specific child requires. This is the second new form of anthropology in autistic individuals. A new sort of “language” has to be created to establish a bridge of communication. This is done by identifying the responses of the children to certain stimuli and their reactions to those stimuli and then enforcing those connections.

For example, picture exchange communication where the word glass is plastered on a glass of water as a desire to be expressed. Another case in point, wanting candy. How would a child express the desire for candy? To teach this communication skill the children are provided with books with pictures.

[su_quote]I want candy,” is addressed by posting the child’s picture for the word “I,” “want” as want and “candy” as a picture of candy to teach them how to ask for the treat.[/su_quote]

The children, therefore, learn to communicate through those pictures. Over time, with each specific child, clarity increases by finding ways to enhance existing forms of communication and finding new ways of communicating. Research has been done on these things and improvements are made through them. This is a grueling process since every child has to be identified on many domains of communication and a specific approach has to be catered with every child which brings us to our next form of anthropology.

 

Cultural Anthropology

              The goals and desires for the future have to be balanced out between the parents, therapist, institute and the child which requires cooperation and creates a new form of culture based around the needs, wants and plans of each party. Let’s start with the parents, their plan consists of their child becoming “normal” (the Autism Specialist emphasized the quotations on the word normal which points to the concerns with social norms mentioned before), able to take part in social interactions and to no longer require therapy within 5 years.

The therapist’s goal is that the child is functional enough to not require assistance in necessary, everyday adaptive skills like hygiene, using the toilet, eating, etc. The goal of the institute can range from money making to equipping the children with the vital skills as fast as possible. Since it is such a demanding disorder with an expensive cost, the institute can stretch out the therapy in order to drain money from the parents and this can also branch off into economical anthropological studies. Other goals can be to equip the child with the important skills properly so that as many individuals can be helped as soon as possible.

Depending on the severity and IQ level of each child they may express some demands for the future but this is seldom the case. Only rare cases with mild autism usually express the desire for a want or need for the future. An interesting fact is that for a few decades there was a misconception that autistic people do not feel emotions until the proper research was done on it. The therapist expressed that it was her personal belief that the child just has difficulty in connecting with the person and once they do, they do not forget you and them. The argument can be made that this is a very strong, meaningful social bond (social anthropology) which isn’t even expressed in the average society that much, a sort of kinship.

              Mostly due to a lack of advancement in Pakistani culture of mental health, most cases go unregistered and undiagnosed. We have no way of knowing how many people have autism and what the severity is. As society progresses and hopefully when demand for better health service increases we’ll take the proper steps to in order to make our society healthier as a whole.

 

Religious Anthropology

Though it is not true religious anthropology, what follows does fall into this domain. It can be perceived that the flapping of their hand or rocking back and forth is a ritual of sorts. It is incorporated into their being and the argument can be made that their self-regulatory behavior is sacred and when it is intruded upon they can even get violent since it is profane to stop. It overloads their senses and they do not feel at ease until they start their ritual again.

An Unforgettable Case

              The therapist I interviewed admitted that during the beginning you are unaware of what is going on and that it takes a while to understand how to deal with each new situation. The therapist then mentioned a case where a child would continuously throw his water bottle away every time he tried to drink and the therapist did not understand why. They are taught not to engage in these disruptive behaviors but something felt off so she decided to open the bottle to fill it or wash it since something was obviously wrong. She opened the bottle only to discover that more than 3/4th of the bottle was filled with bits of food that would escape from the child’s mouth while drinking and it completely cluttered the bottle.

It was found out that the housemaid would fill that dirty water bottle daily without cleaning it and the consequence was that the water would not flow out which would agitate the child. This form of behavior had to be corrected when the therapist visited the house to inform the parents and teach the housemaid to properly wash the bottle to accommodate the special needs of the child. Another issue was the parents themselves were suffering from depression which has its own domain of different interactions. This culminated in not paying the proper attention required by the child. Yet another thing that was discovered along with the dirty bottle was the fact that the child would be left in the basement of the house after arriving from therapy.

The next morning the maid would grab the isolated child and send him off to school with the driver and the cycle would repeat again. An important thing to remember is the fact that all those involved are humans previous to flaws. A person might say that they would react differently under such circumstances but there’s no way to test that. The important thing to consider is that anyone can feel overwhelmed by the crushing feeling of not knowing what to do and they might make the wrong choices. One way we might improve this is by having a more open and aware culture which is more accepting of certain deviations from the norm. We need flexibility and a proper strategy to accommodate all walks of life.

              The first step, in this case, was to get the parents on track for therapy and counseling because only when they are able to take care of themselves will they be able to take care of their own child. The therapist counseled them and made them go for therapy again, which they were neglecting. The second step was to call the maid and start her training in the supervision of a professional to meet the needs of the child. Both the parents and the maid were taught how to deal with an autistic child to equip them with the tools and knowledge to help stabilize the child as a well-adjusted community. This was accomplished by starting at the basic level, cleaning his bottle, checking his lunchbox, etc, and then improving the methods with time.

           As people do, the parents, many times, shift the blame onto themselves, finding excuses to claim to themselves and others that this is their fault, not taking care during pregnancy, post natal and engaging in healthy activities but it is pertinent to note that no one can predict the future with complete certainty and it can be said that it is necessary to go through the steps to accept that fact in order to move forward.

 

Interactions Between Themselves

 

              It was my misconception that when placed together, the autistic individuals would recognize and be able to connect with each other but when I relayed this thought to the therapist, she informed me that this was not the case. As it has already been mentioned, they have difficulty in social interaction, EVEN within their own group. I was informed that to be able to recognize another with the same disorder, they have to have an exceptionally high IQ.

I progressed to change the form of the question a little bit. I asked if rather than recognizing that they face similar issues if they were able to sense the fact that they were similar even without engaging in any sort of interaction. She confessed that she did not think about paying attention to that. So this could be another form of social study that could be conducted to find answers specific to interactions that we might not have noticed before

 

Interactions Between Them and You

 

I asked for instructions to follow when conversing or interacting with an autistic individual. She revealed to me that the most important thing is to not invade into their personal territory or disrupt their self-regulatory behaviors aggressively or in an offensive manner. For example, when they are flapping their hands, to just go up and without warning, shaking their hands. The autistic person will have a very bad reaction to that. It is important to show that you’re not a threat to them.

Their trust can be gained by extending a sort of peace offering, like a candy perhaps, in their peripheral vision and let them come to you. You could also mimic their movements to draw their attention to once again showing that you mean no harm. These were my thoughts which I relayed to the therapist and she confirmed that this was the way it’s done. She also added that sitting by them, doing nothing and not intruding can also draw their attention.

 

Failed Observation

 

              This is a short report on the participant observation I intended to participate in. I left for a carnival for autism awareness month in order to observe and possibly interview autistic individuals. I do not know if I arrived in early or was unable to recognize the children with the disorder but I did not see any autistic children save for one who had his head down with the typical action of flapping his hands while avoiding confronting the environment. He seemed to be dealing well in an environment that must have been new to him but was still unwilling to directly make contact with it or the people there. Other than that I was unable to witness any other children and soon left after finding no luck.

 

Evolution and End Remarks

 

              Taking into consideration all the things mentioned and also how evolution is a core aspect in anthropology it is possible to say that from the very beginning to the point of recovery is a form of evolution. From denial to acceptance to therapy to the ability to deal with autism, not only as the parents but the individual himself is a process which encapsulates taking all different types of anthropologies mentioned and moving forward with them in order to become a more adapted individual, community, society and so on. But this is not the end.

Evolution continues even further. When the child is finally independent, a follow up is required to overcome the new issues that arise in the new environment and it becomes an endless, yet easier to deal with cycle over time. I end my ethnography by stating this is still just the beginning and a short overview with seemingly endless possibilities for academic research and study from multiple angles of science as well as room for continued improvement.

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This Article is Written By Muhammad Maaz Mughal

 

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