［ここだけの話05/ Just Between Us05］

Looking in the Mirror

Reflections on Living with Autism

ドーマン、ベンジャミン（人類学研究所・第一種研究所員）
Benjamin Dorman （Senior Researcher, Anthropological Institute）

The author and Lenny, his son

Scholars engaged in research and ethnographic fieldwork sometimes experience changes in circumstances that often cause them to take radically new directions in their research. For various reasons planned interviews cannot be conducted, scheduled meetings do not eventuate, libraries containing crucial documents are closed during the planned fieldwork times.

In mid-2014, none of these circumstances applied in my case.

I had prepared for, and was examining Japanese power spot tourism and spiritual services in Hawai'i during a sabbatical year, focusing in the interactions between Japanese tourists and Hawai'ian healers. Although I managed to present some preliminary findings (Dorman 2016), my then 3-year old son Lenny was diagnosed on the autism spectrum in Honolulu. My world--and my worldview--changed completely.

In my experience, living with autism necessitates self-reflection. My preconceptions and biases are challenged almost every day. It is like looking at yourself and your world through a mirror that sometimes makes your image distorted and strange. Yet it also presents moments of great clarity.

Although my wife and I had been concerned with Lenny's development sometime before moving to Hawai'i, receiving a diagnosis made a significant difference. I immediately put my original research plans on the backburner while I tried to focus on understanding what the diagnosis meant and how to deal with it.

Autoethnography is a tricky business. In attempting to explore personal experiences and relate them to broader issues and the community at large, one also tries to describe and critique cultural beliefs, practices, and experiences. While autoethnography may be subject to criticisms of whether the results meet "academic" requirements of validity, generalizability, and reliability, my intention is to convey--as accurately and evocatively as possible--my experiences as a parent of a child on the autism spectrum through this to try and shed some light on views of autism spectrum disorder in Japanese society and to a lesser extent the United States, specifically Hawai'i. In a similar way that Carolyn Stevens uses elements of her personal story to highlight issues surrounding disability in Japan in Disability in Japan, I hope to add another dimension to this with a specific focus on my experience with Lenny. I follow Elizabeth Barrett's (2017) suggestion that parents of autistic children acquire skills as caregivers that enable them to act ethnographic researchers, and that they have privileged access to "hard-to-reach" research participants.

Lenny's Joruney

Lenny was a very responsive child until he was around 13 months old. He could maintain eye contact with people and laugh with them on a shared object or activity. I discovered later the importance of shared attention or joint attention is to the basics of human communication. Several studies have shown that problems with joint attention are associated with developmental processes. Difficulties in establishing joint attention may partially account for differences in social abilities of children with developmental disorders. Lenny lost his ability to maintain eye contact; he also stopped using words to connect with others. In fact, he has lost, regained, then lost, and then regained words a number of times during his life. Speaking of words, we have always used Japanese and English at home.

Lenny transformed from a bright, bubbly interactive child to one who was quite withdrawn and very hard to reach. There are phrases used commonly that describe healthy, normal childhood development, such as the "terrible twos" in English or the Japanese "iya iya ki" ("the 'nope, nope' period"), which describes a time when 2-3-year-olds rebel against the demands of adults. Yet these phrases do not accurately convey the sinking feeling I certainly felt when any attempt to reach Lenny was met with no discernible response. The more I tried, the harder it felt to reach him.

Specialists' Opinions

Before moving to Hawai'i we searched for solutions online and consulted specialists in Nagoya, and Tokyo; the prognosis was pretty grim. The 18-month health checkup set up in our local ward office confirmed our concerns that there were issues that needed to be addressed. Ultimately, none of the advice was useful to us, despite the efforts of those we consulted.

The author and translator David Mitchell wrote the preface to Higashida Naoki's bestselling work, The Reason I Jump. Higashida was diagnosed with autism when he was five but was able to learn hiragana and katakana and then to write. Mitchell, whose own son is on the autism spectrum wrote that he saw a great gap between what specialists say and what was happening on his kitchen floor. Mitchell's words rang true for me after we saw various specialists--Japanese and non-Japanese. The Japanese specialists offered different opinions--he'll be fine, he probably won't be fine, you will be fine, just make sure you look after yourself. An American speech psychologist based in Tokyo recommended we leave Japan permanently because the services in Japan and the understanding of autism were completely inadequate.

While that was not possible, the opportunity to move to Hawai'i came up at the same time. We approached the Hawai'ian branch of the US Department of Health's Early Childhood Intervention as soon as we arrived and signed up for services. Once Lenny received the diagnosis of autism spectrum disorder, we were able to get some form of governmental support, for which we remain very grateful.

We met with an active group of parents who advocate on behalf of their children for more government support and services. There are a number of powerful volunteer groups operating non-profit organizations in Hawai'i (and the US in general) who lobby for support.

We discovered a parent-led home-based program called the Son-Rise Program that was founded in the US by the parents of a child who was diagnosed with severe autism in the 1970s when he was a young child. By that stage we had tried a number of approaches including Applied Behavioral Analysis and Floortime but did not find these to be effective for Lenny. The Son-Rise approach is to use the child's motivation rather than repetition to inspire learning. This appealed to us and after we decided to try it we found its philosophies and methods suited us.

Although Lenny was eligible for "special needs education" classes in school in Hawai'i, we decided to cut short our time there and return home to Japan to run a Son-Rise program at home full-time.

Our return to Japan highlighted some significant differences that exist with the United States. Teruyama Junko notes that Japanese media describe the special education and legal support systems in the US in relation to hattatsu shōgai (developmental disabilities) as being the ideal model to be emulated (2014, 16).

The main difference I found is that the onus on the US government to provide services; parents have a right to access services. It surprised us in Hawai'i, for example, that in our initial interview with the coordinator of our services team she wanted to know what we, as parents, wanted for our son. She explained our rights--including the right to accept or reject any suggestions regarding what methods the team used to help Lenny (and us, for that matter). From what we saw, parents played an active role--if they wanted to--in advocating for their children and demanding services, particularly when it came to education.

Another fundamental difference between the countries were the range of options available to parents. A parent-based NPO--Hawai'i Autism Foundation--obtained significant funding to run a course that helped parents in Hawai'i to cope with stress and manage financial difficulties, for example. Another organization, TACA (Talk About Curing Autism), was very active in supporting parents, particularly those who had obtained a relatively new diagnosis. Such options are not available in Japan.

Our Return to Nagoya

After returning to Nagoya, we considered getting another diagnosis, the doctor at our local welfare center told us that there was no point in providing a diagnosis because there were no services available for Lenny. Japan was "primitive" - her words - in its approach to developmental disability. We applied for day care services, which involves placing your son under the care of an organization in a house or facility for a few hours a week. This was mainly to reduce the pressure on my wife, who was living with Lenny full-time while I worked. We came across a woman who had two children with special needs and ran one of these facilities. The advice she gave my wife was this: go to the local ward office with no makeup on, "look your worst, and if possible, take your child when he is tired, hungry and screaming--that's how you'll get approval for the services." This approach was radically different from what we experienced in Hawai'i.

We decided that in order to run our Son-Rise Program, we would need to recruit a team of volunteers, which we managed to do through putting up posters at a local university and advertising on Facebook and on the Japanese volunteer recruitment site Boramimi.

We built up a team of volunteers whose members have changed over the years. Essentially, we provide training in Son-Rise principles and techniques, and they come to our place and take shifts working with Lenny--encouraging his eye contact, language, and socialization. We hold Outreaches, which involve bringing over a senior Son-Rise teacher from the US into our home for intensive short visits and gain insights into how our program with Lenny was going. In order to cover the costs of Outreaches we made our story public and ran crowdfunding campaigns--the first was through the Japanese crowdfunding platform ReadyFor. It was through ReadyFor that I learned of the range of activities being conducted in Japan by other parents, organizations, and businesses to raise awareness for their cause through the extensive use of social media.

Another branch of our fundraising activities through SNS has been education. Part of our ReadyFor campaign was to hold a public meeting reporting on the results of the campaign. At that time we came across the head of a day care center, hoikuen, in the town of Chita in Aichi Prefecture. Our discussion of the philosophy of the Son-Rise Program and the positive results we found with Lenny motivated her to employ my wife to teach her staff about the program. We go there every 2 weeks to give feedback to the staff on children with developmental delays they work with; a few months ago we joined the staff for 2 full days of public lectures. My wife is also involved in lecturing for an NPO to people who are training to become Special Support Education staff (tokubetsu shien kyōikuin) at schools, which was an initiative implemented by the Japanese government in 2007. Now that Lenny is of school age, we are about to enter into a new world. We approached our local school and mentioned the variety of needs he has--dietary concerns, sensory issues, difficultly communicating in groups, amongst others. From our perspective, we feel that it would be easier to homeschool him at this stage, in consultation with the teachers at the school so that we can access textbooks and work with age-appropriate materials. The school agreed with this request after we showed them what we have been doing with the Son-Rise Program at home.

Final Thoughts

Since we began our journey with autism, and particularly Son-Rise, we have seen enormous changes in Lenny's development--he has become highly verbal and enjoys interacting with a wide range of people. There are, however, a number of challenges we continue to face.

My stance may be questioned or criticized for not meeting traditional "academic" standards such as validity, generalizability, and reliability. But my concern is the kind of contribution my experience might make for families in Japan who do not have the opportunities we have or access to funds. I can relate the challenges people face surviving on a day-to-day basis when living with a family member with an autism spectrum disorder. Being participant, observer, and researcher does place me in a unique position in many ways. I am grateful for the opportunity to observe myself and challenge my assumptions.

(All photos courtesy of the author)

References

Barrett, Elizabeth. 2017. Tied to the Worldly Work of Writing: Parent as Ethnographer. Journal of Intellectual Disabilities. doi: 10.1177/1744629517741008

Dorman, Benjamin. 2016. "Spiritual Tourists" and Local Healers at a Hawai'ian "Power Spot." Bulletin of the Nanzan Institute for Religion and Culture 40: 90-103.

Higashida, Naoki. 2013. The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. Translated by David Mitchell. Random House: New York.

Teruyama, Junko. 2014. Japan's New Minority: Persons with Hattatsu Shōgai (Developmental Disability). PhD dissertation. University of Michigan.

Stevens, Carolyn S. 2013. Disability in Japan. Routledge: London.