Research Final Paper The Reason I Jump Malka 1 Perle Malka Lindsey Smith OT 370 - Understanding Autism: 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 neurodiversity 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 autism spectrum, 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 neurotypical 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 neurotypicals 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.