Research Final Paper Malka 1

Perle Malka

Lindsey Smith

OT 370 - Understanding : Participation Across the Lifespan– Spring 2020

May 10, 2020

THE CURE TO AUTISM BEGINS WITH CURING OURSELVES

Over the last decades, the phenomenon of autism has undergone numerous transformations and today it is widely known as a public health concern that has undeniably been shaped by the biomedical community. The biomedical community view autism as a neurological deficit and people with disabilities as people who need to be “fixed”. The widening of the spectrum meant that autistic people, fueled by the self- advocacy movement were encouraged to communicate and give voice to their experience (Bagatell, 2010). However as we read accounts of autism as a lived experience one cannot help but be saddened by the disconnect between how we view and treat people with autism and how they actually view the world. The advancements in assistive technology has become an important tool of identity for autistic people but has also proven to challenge our older models of disability which are founded on the beliefs in the pathology paradigm that there is one” “normal” way for human brains to function and that if functioning diverge from the dominant standard then there is something wrong with you (Walker, 2016).

Because of this pathology paradigm, the opening page of “ The Reason I Jump” by Naoki Higashida has a comment which has reverberated through time, like an echo, from the mouths of caretakers of autistic individuals: “Higashida’s insights Research Final Paper The Reason I Jump Malka 2 unquestionably give those of us whose children have autism just a little more patience, allowing us to recognize the beauty in ‘odd’ behaviors where perhaps we saw none”.

The hippocratic oath is an oath of ethics historically taken by physicians when a new physician swears to do no harm, but harm has been done and we witness the harm when the mother admits “where we saw none”. This is where this medical model has taken us, to a place where it is difficult to see beauty in and it makes living with autism is even more difficult than it already is as expressed by this young author. By making such comments, we acknowledge that through this memoir, this parent changed their view and approach towards their autistic child. This act of admission is the first step in recognizing that lived experiences are indispensable in breaking the barriers that have been placed before us in seeing the beauty but also in connecting families and identifying all the ways the medical model has failed us in the past.

Still with one foot in childhood, this revelatory godsend memoir offers proof that inside the “helpless-seeming” autistic body is a subtle and complex individual as you and I. By demonstrating his intellectual and spiritual acuity, fertile imagination, analysis of his environment and condition, we understand not the symptoms but the consequences of autism on the individual, we vilify the pre-conceptions of the , but most importantly we see our contributions to his difficulties by hearing his cry-out for patience and compassion on our part. By listening to his voice, the message I understand it echoes is that the cure to autism begins with curing ourselves and our belief system. There is a need for people to be more accepting, affirming and empathetic in their interactions with neurodivergent people and that this Research Final Paper The Reason I Jump Malka 3 starts with the simple act of listening. Lastly, the lessons to be learned with the advancements in augmentative technology is that we have been wrong in the past, we have caused harm and by connecting emerging cognitive science to everyday lived experiences of autism we substantiate the significance of exploratory learning through their eyes and acknowledge the existence of an autistic identity as a central component of self-identity and one that defy the pathology paradigm of autism entirely.

“The Reason I Jump” is a rare roadmap in the world of a 13 year old Japanese boy with what is known today as severe autism. Without words, or otherwise known as non-verbal, Naoki would have been labeled as a low functioning autistic child, but with words, granted through his assistive technology, we understand that the freshness of his voice coexists with such wisdom that makes for the term “low functioning” falls short on nuance and long on stigma. In the article from “Cure to Community:

Transforming Notions of Autism” the author states that even within a diagnosis of autism individuals may be described as high or low functioning although as Grinker points out: “The autism spectrum offers no obvious borders between different kinds of people with autism.” The notion of HFA or high-functioning autism she states, is used to describe individuals with above average to average intelligence, highly developed language skills but with significant social and behavioral concerns (Bagatell, pg 35).

This could not be further from the truth as Naoki demonstrates in his book that he is quiet intelligent despite being non-verbal. I had to remind myself over and over while reading this memoir that I was reading a book written by a 13 year old child and not a great philosopher or romantic poet. On page 89 for instance, he is asked “Would you give us an example of something people with autism really enjoy”. He answers: “We do Research Final Paper The Reason I Jump Malka 4 take pleasure in one thing that you probably won’t be able to guess…making friends with nature … we aren’t much good at people skills…we think too much about what sort of impression we are making on the other person… but nature is always there to wrap us up, gently: glowing, swaying bubbling, rustling…as if being swallowed up into it, and in that moment, I get the sensation that my body’s now a speck, a speck from long before I was born, a speck that is melting into nature herself. This sensation is so amazing that I forget that I am a human being…but human beings are part of an animal kingdom too, and perhaps us people with autism still have leftover awareness of this buried deep down.” What we learn here is that he is smart, charming and self-aware.

With his autistic mind he was able to stretch our vision of what it is to be human along with an unexpected epiphany… as a result of his concern for keeping up with impressions he felt comfort in social distancing himself and making friends with nature rather than other people. This answer begs to revisit the preconceptions of functionality. What I witnessed here is that he understands us more that we understand him and that’s just how quickly he dismantled our pre-conceptions of the autism spectrum disorder labels. Zieldalt, in her article “Where the Vocabulary of Autism is

Failing” goes over additional cases with varying presentation of ASD and reinforces that labels can be misleading and that case by case one can function well in certain areas of life and struggle in others thus exhibiting an idiosyncratic patchwork of skills and challenges (Zieldalt, 2016). Their stories illustrate a problem that has plagued autism research for decades: What exactly do the terms high and low-functioning mean and to whom do they apply? Labels can trap children in a category that is often stigmatizing whether or not they are high or low functioning. In question 1 in the book Research Final Paper The Reason I Jump Malka 5 we witness evidence of how Naoki felt stigmatized into a category when he says: “ You may think that speech is the only way to get your point and intentions across … but now I am well able to express my true self using a computer or alphabet grid” and also by admitting that he never dreamed he could make it work. Moreover, research has demonstrated the inherently dynamic nature of autism, by pointing out to the weakness in using the same label to describe a child throughout his/her life (Zieldalt, 2016). Not only functionality labels are invalidated in the memoir, they are shown to stigmatize but

Zieldalt adds that they hinder doctors build rapport between families and autistic individuals.

The medical and health system is set up to address medical issues, and so it’s hard for parents to talk about what their kids are good at because they’re so focused on deficits. In acknowledging the format of the book where ask questions answered by Naoki and the way he answers by commenting on how we believe certain things falsely indicates that the deficit was on our part all these years when computers didn’t give him a voice. In the introduction for instance, David Mitchell notes that the three characters used for the word “autism” in Japanese signify “self”, “shut”, and

“illness”. This is the sociocultural environment that Naoki Higashida and other autistic children have to grow up in, one that fails to support differences and generates intolerance for diversity. A paradigm is a lens through which one views reality and a paradigm shift must happen internally, within the consciousness of individuals, and must also be propagated in the cultures in which we live (Walker, 2016). Jiheisho,

Japanese for autism, he says conveys an image of people locking themselves up inside themselves. Time and time over Naoki reshapes the lens through which we view Research Final Paper The Reason I Jump Malka 6

ASD and goes through great lengths to demonstrates that his yearning is for connection and not isolation. For instance the message of the book is a cry out for being heard and understood and specifically he says he uses his alphabet grid to get across to other people. He says that before using the alphabet grid he felt as being a doll and spending his life in isolation without dreams and without hope. This shows deep sorrow on his part before he could connect with neurotypicals with assistive technology. The sorrow is also felt on the part of the parent when they recognized their shortcoming in seeing the beauty in the “odd behaviors” of their autistic child. This is one reason why we must advocate for the paradigm shift of pathology to a paradigm of neurodiversity because not only it helps deter stigma but it also encourages families to connect on ability and not disability.

The neurodiversity paradigm is evident when he is asked why are your facial expressions are so limited? He replies: “Our expressions only seem limited because you think differently from us…. For a person with autism, the idea of funny doesn’t match yours…criticizing people, winding them up, making idiots of them or fooling them doesn’t make people with autism laugh…. We laugh under our duvet when no- one else is watching”. This ultimately boils down the fundamental assumptions there is one “normal” way for human brains and human minds to be configured to find something funny or not or to express themselves facially one way or another. This is one amongst many such examples where he proves to us that neurodiversity is all around us and in everything that we do. We all laugh differently, we all express our emotions differently and we all live differently because we are neurodiverse and there lies the beauty of humankind, in our differences. Research Final Paper The Reason I Jump Malka 7

Self-determination is the process by which individuals demonstrate control over their own lives, make choices, and demonstrate competence in doing so. One question asked in particular is on the reason why he echoes questions back to the asker. He says that firing a question back is a way of sifting through his memories. He says that if he’s lucky he will hit a usable experience and if he is not he will get clobbered by a sinking feeling. Repeating the question here is a process of self determination by intentionally doing something that neurotypicals would have assumed he had no control over. The answer relating to his luck and his feelings provides a great opportunity for his family to apply the strength-based model of occupational therapy intervention (Koenig, 2018). Naoki and his family can use this information to build on areas of challenge and to better understand each other.

Another question being asked is why do you flap your fingers and hands in front of your face and he answers that he does this because it allows the light to enter the eyes in a pleasant, filtered fashion. He continues by explaining that unfiltered light sort of needles its way into the eyeballs of people with autism. This explanation is supported in the findings from the Robledo article on the exploration of sensory and movement differences from the perspective of individuals with autism. In the article he states that the data strongly supported the presence of disruption of regulation of sensory and movement differences in the lived experience of the participants. The conceptual model of sensory and movement differences shows that it is important to listen to autistic individuals and allow them to present the “emic view” of their lived experience. Shifting to a strength-based model can change the expectations of not Research Final Paper The Reason I Jump Malka 8 only the autistic individuals and their families, but also of society as a whole for individuals on the autism spectrum (Koenig, 2018).

In psychology, one of the hallmarks of autism refers to their inability to infer what others are thinking or feeling otherwise known as the theory of the mind. Naoki yet again makes us questions another theory as he answers: “when you look at something what do you see first?” With humor, he says we and only we can know the answer to that one! And continues with this statement: “I actually pity you for not being able to see the beauty of the world in the same way we do…you may be looking at the same things as us but how we perceive them appears to be different…when you see an object it seems that you see it as an entire thing first, and only afterward do the details follow. But for people with autism, the details jump straight out at us …” Not only he states that he feels the emotion of pity for us but he gives a vivd description of his self concept and shows disability pride within his community to have such a gift. In a study of “The Role of Disability Self-Concept in Adaptation to Congenital or Acquired

Disability” results suggest that rather than attempting to “normalize” individuals with disabilities, health care professionals should foster their disability self-concept (Bogart,

2014). Possible ways to improve disability self-concept are discussed, such as involvement in the disability community and disability pride. In the foreword Naoki states that he wrote this story in the hope that it would help us understand how painful it is when you can’t express yourself to the people you love and his wish for us to connect this story to our heart and to connect back to the hearts of people with autism too. Research Final Paper The Reason I Jump Malka 9

In conclusion, how could anyone deny him this request? His account has taken us behind the mirror, not of autism, but the mirror placed before us by the medical paradigm of disability. The shift from pathology to neurodiversity paradigm calls for a radical shift in language and beliefs. To describe ourselves in language that reinforces the pathology paradigm is to use the master’s tools, in Audre Lorde’s metaphor, and thus to imprison ourselves more deeply behind the master’s mirror (Walker, 2016). So far in this essay, I didn’t ask to change your opinions to a neurodiveristy paradigm. I didn’t ask people not to use a fictive reference point of “normal,” or functioning labels.

All I was able to do is demonstrate through the Naoki’s first person account, is that the pathology models of disability and it’s language have been shown to be nothing short of absurdity in the context of this first hand account. In this case assistive technology was the master of neurodiversity’s tool that dismantled the master of pathology’s house that placed autistic individuals behind a mirror that deemed them as

“unreachable”. Throughout history, the autistic community has suffered greatly due to the medical model of disability which involved sedations, forcible hospitalizations or by making them believe that through the functions that genetics bestowed upon them, the autistic individual must correct his birthright to own his own identity by learning to mask themselves in public which is what the mother is referring to by “odd behaviors” and why Naoki has to answer so many “why do you” questions. The real question that we must ask ourselves is why do autistic people must become masters of prestidigitation? The answer lies in diagnosis day, a doctor of a sort told their family that their child was not normal. As one conceptualizes this statement, we understand Research Final Paper The Reason I Jump Malka 10 that medicine devalued not only autistic people but all of us, not as human beings but reduced all of humankind to the net contributions we make to society. The confessional memoir of Naoki Higashida demonstrates where we have failed as a society with our beliefs and by showing us why we must “live and let live”, a famous proverb that teaches us that we should tolerate the opinions and behavior of others so that they will similarly tolerate our own. My biggest critic of this lived experience however, while extremely powerful, is that we shouldn’t value lived experiences based on the coherence with the data observed such as in the article of Robledo in “the exploration of sensory and movement differences from the perspective of individuals with autism”.

If we continue to do so it would deny one’s right to personal identity, no explanations needed, and encouraging autistic people to give answers as to why they are who they are is making the power over their identity contingent and temporary.

This is how a 13 year old autistic Japanese boy began to cure our beliefs, our society and dismantled the master’s house with an alphabet grid.

References

Bagatell, N. (2010). From Cure to Community: Transforming Notions of Autism. Ethos,

38(1), 33–55. doi: 10.1111/j.1548-1352.2009.01080.x

Bogart K. R.(2014).The Role of Disability Self-Concept in Adaptation to Congenital or

Acquired Disability. American Psychological Association 2014, Vol. 59, No. 1, 107–115

0090-5550/14/$12.00 DOI: 10.1037/a0035800 Research Final Paper The Reason I Jump Malka 11

Higashida, N., Yoshida, K. A., & Mitchell, D. (2016). The reason I jump: the inner voice of a thirteen-year-old boy with autism. New York: Random House.

Jodi Robledo, Anne M. Donnellan and Karen Strandt-Conroy. “An exploration of sensory and movement differences from the perspective of individuals with autism”

Nov. 2012. Frontiers in Integrative Neuroscience. 101-115.

Koenig K. P. et. al.,(2018). Self-Determination and a Shift to a Strength-Based Model for

ASD. AOTA. Ch 11. pg.155-165

Walker, Nick. “Throw Away the Master's Tools: Liberating Ourselves from the Pathology

Paradigm.” NOTES ON NEURODIVERSITY, AUTISM, AND COGNITIVE LIBERTY,

(2016, August) neurocosmopolitanism.com/throw-away-the-masters-tools-liberating- ourselves-from-the-pathology-paradigm/.

Zieldalt, N. “Where the Vocabulary of Autism is Failing” The Atlantic, Atlantic Media

Company, (2016, April) www.theatlantic.com/health/archive/2016/04/the-language-of- autism/476223/.