『人類学研究所 研究論集』第 7 号（2019）
Research Papers of the Anthropological Institute Vol.7 (2019)

Autism, Community Building, and Volunteering: A Personal Journey

Benjamin Dorman

Keywords
Autoethnography, autism spectrum disorder, community building, crowd funding
１．Introduction
This essay concerns autoethnographic work related to my family and specifically myson, Lenny, who is on the autism spectrum. I will be focusing on a few specific points:
first, how autoethnography and one’s life experiences can help reflect on social trends in
different societies. I will discuss the cases of the US and Japan through my experience.
Second, I consider issues related to the autism spectrum, or more specifically, thecharacteristics of autism in Lenny and personal experiences on this journey with autism.
Third, I will discuss community building in the context of crowdfunding, social networks,
and how my family have developed a team of volunteers in order to help us.
２．A Criticism of Autoethnography
Autoethnography can be a tricky business—one attempts to explore one’s experiences
and relate them to broader issues and the community at large in order to describe andcritique cultural beliefs, practices, and experiences. While there are potential that
autoethnography can provide through using one’s life as a source of research,
autoethnography is also subject to criticisms of whether the results meet “standard
academic” requirements of validity, generalizability, and reliability.
Sara Delamont (2007), in a provocative presentation, is particularly critical of
autoethnography, arguing that autoethnography is almost impossible to write andpublish ethically, that autoethnography is (personal) experience, and is noticeably
lacking in analytic outcome. Finally, she argues that autoethnography focuses on the
powerful and not the powerless, which is whom we should be studying as social
scientists. She claims that autoethnography violates the two basic tasks of the social
sciences, which are (1) to study the social world (introspection, she argues, is not anappropriate substitute for data collection) and (2) to move the discipline forward andchange society.
I should state that while I am not the first parent of a child on the spectrum toattempt autoethnography, I am joining Elizabeth Barrett (2017) in her work on
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documenting her journey with her son. I do acknowledge that autoethnography (likeany approach) has pitfalls, and Delamont infers that simply “looking into oneself”
hardly constitutes reasonable grounds for serious academic discourse.
Certainly, there are ethical issues related to autoethnography. In my case, these affectmy son and the way in which we have publicized and developed our story in order tobuild a community. We have a public Facebook page (see Team Lenny: A Journey with
Autism in references), we ran two crowdfunding campaigns, both my wife, Tomoko, andI give public talks about our story and journey with Lenny, she teaches what she haslearned as a parent at a hoikuen (day care center) in Chita city, Aichi, and every six
months she also teaches people who are training to be teaching assistants to help in
public schools with children with special needs (tokubetsu shienin) in Nagoya. Our son
was three when we first started publicizing our story. We did not seek his consent andhe could not give it. On the one hand, we could be accused of “focusing on the
powerful”—privileging our desire to seek help for our family through helping us asparents—and not on the “powerless,” our son who cannot speak for himself because heis too young. But on the other hand, in my opinion, the benefits of publicizing ourprogram, seeking volunteers, seeking funds from the community, and building ties
within the community by sharing the details of our lives has had a positive effect,
certainly for us as a family, but also for others who are looking at the program we are
running and learning from it.
I have not sought Lenny’s consent in preparing this paper and he is not in a position
to give it. Some may consider this approach to be unethical—the means justifying theends—but I do not see it that way. I do not necessarily agree with Delamont’s idea that
autoethnography violates the two basic tasks of the social sciences in this case. Part of
my purpose is to study the social world and the circumstances surrounding our son’scase, and in doing so open up further discussion about the role of family and community
regarding disability care.
I also wish to convey, as accurately and evocatively as possible, my experiences as aparent of a child on the autism spectrum. I want to share with my audience feelings andemotions, and hopefully to make an empathic connection. In doing so, my aim is to try
and shed some light on views of autism spectrum disorder in Japanese society and to alesser extent the United States, specifically Hawai‘i.
３．Diagnosis and Despair
At the time of writing Lenny is seven years old. He was born in Nagoya—Tomoko is
Japanese, I am Australian. Lenny picked up language very early, both English andJapanese, and was a very responsive child up until the age of thirteen months. He has
lost the language he gained a number of times. He demonstrated signs of sharedattention, which is where children from around the age of two months engage in joint155

『人類学研究所 研究論集』第 7 号（2019）
Research Papers of the Anthropological Institute Vol.7 (2019)attention and conversation-like exchanges with adults during which each is the focus of
the other’s attention and they take turns exchanging looks, noises and mouth
movements. Lenny was able to maintain eye contact with people and laugh with them
about a shared object or activity. 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.
Given Lenny’s ability to connect with people that I saw, I had dreams that he would
become a great communicator. He was, however, often sick and took time to recoverfrom his illnesses. I simply assumed or wanted to believe that this was what happened
to all boys. I was wrong.
From the time Lenny was born, Tomoko followed a US-based website called
whattoexpect.com. Through this she learned that children who are not pointing at
objects, who are not giving eye contact, who begin to lose words by the time they are one
year old, may have some developmental difficulties. Lenny began to show these
traits—he went from being a bright, bubbly child to one who was quite withdrawn. It
took us a long time to actually understand the impact of losing joint attention meant. It
was extremely confusing; it remains confusing.
Initially I refused to accept that this was actually happening to our son. I finallyovercame my denial when I realized he no longer came rushing to the door to greet me
when I got home from work and wouldn’t even look at me or show any response when I
loudly called his name to him a few meters in front of him.
We began to search for solutions online; the prognosis was pretty grim. We began tofocus on the word “autism” and then moved into different language – “autism spectrum
disorder,” “pervasive developmental disorder,” in fact, a whole range of new terms thatcompletely confused us.
We consulted specialists in Nagoya, and also Tokyo. The 18-month health checkup set
up in our local ward office confirmed our concerns that there were definitely some issues
that needed to be addressed in terms of communication. However, the Japanese medical
professionals did not offer any solid advice, other than “let’s just see how things turnout” (yōsu mimashō), which, to parents veering on desperation, is not helpful. An
American speech psychologist based in Tokyo we consulted recommended we actuallyleave Japan permanently because the services here were inadequate.
I recall the words of the author and translator David Mitchell, who wrote the preface
to the English edition of 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. These words continue to hold true for us.

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４．The Journey Begins
Although we were not in a position of leaving permanently, we were able to move
temporarily to Hawai‘i in 2014 when Lenny was 2 years and 8 months old. Before wearrived we contacted Hawai‘ian branch of the US Department of Health’s Early
Childhood Intervention division for information, and we signed up for services upon our
arrival. Lenny received a diagnosis of autism spectrum disorder and based on that ateam comprised of a speech therapist, and occupational therapist, and a consultant wasformed. We were able to get fifteen hours a week of therapy for Lenny, all paid for by thetaxes of US citizens, to whom we are very grateful.
We also came in contact with a very 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Ⓡ which
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. He eventually graduated with a master’s
degree in biomedical ethics from Brown University and is now teaching the Son-Rise
Program himself. This program brought about a fundamental shift in my thinking,attitude and approach to autism, and Lenny’s case in particular.
By that stage we had tried a number of approaches including Applied Behavioral
Analysis (ABA) and Floortime, which were recommended by different therapists in
Hawai‘i but did not find these to be effective for Lenny. ABA in particular is promoted
and supported with government funding but the approach did not appeal to us at all.
I am not a Son-Rise professional but a parent who uses the program, so my comments
come from that perspective. The Son-Rise approach is to use the child’s motivation
rather than repetition to inspire learning, and we found this to be the most natural fit
for us. One lesson I learned is that there are multiple therapies available in dealing
with autism spectrum disorder, and none of them will fit every single case or thelifestyle choices of the families, which is probably why there is so much confusion andmystery surrounding autism spectrum disorder. While this can help to explain the“let’s-see-how-things-turn-out” message we got initially in Nagoya, it is important thatfamilies are exposed to a variety of options, which is what we experienced in Hawai‘i.
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, in an environment where we felt comfortable and knew
more people.
While I am not going to go into arguments about the different interpretations ofautism spectrum disorder, I will explain what it meant for us with Lenny. I have come toview his autism as being defined by challenges he faces with social interaction.
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Specifically, there are 4 key elements that the Son-Rise Program® focuses on. This
program views autism as a social relational disorder rather than a behavioral disorder.
They are:
1. Interactive attention span;
2. Verbal communication;
3. Eye contact and non-verbal communication;
4. flexibility.
In the Son-Rise Program® these are called the four fundamentals of socialization andare divided into 5 stages, stage 1 being the level where the child has the most challenges.
When we began the program, Lenny was basically at stage 1. He is now somewhere
between stages 3 to 4 for most of them.
Before I discuss community development, I will briefly describe what we do, or rather
what we started to do, in order to help with his social relational challenges.
When we first began running our program with Lenny, he had virtually no eye contact.
He had some words but was unable to connect his words in ways that we could
understand. He had great difficulty with social interaction and we had great difficultycommunicating even the simplest requests, such as “put on your shirt.” When we spoke
to him, he did not show “normal” signs of comprehension—no nodding, no physical orverbal response.
So how do we encourage social interaction? I will just consider eye contact. Eyecontact is one of the crucial elements of communication—to neurotypical people thiscomes “naturally” but to many people on the spectrum like Lenny, it is a real challenge.
In 2014, his eye contact was fleeting at best. In fact, he would actually avoid eye contact.
These days, he has great eye contact—in fact, that is no longer a program goal for us.
How did we get to this point? The key in the Son-Rise Program® is to celebrate every
moment of eye contact he gives. Through celebrating eye contact, we show him that not
only is eye contact a good thing when communicating with others, when he gives us eye
contact it shows that he is communicating with us. So, for example, we will start bysaying “thanks for looking at me!” Then, when he began to see that we had a positive
reaction to that, he started to say words while looking at us. He would look at us andsay “ball”—so the celebration point was “thanks for looking at me and for using thatword—you are so great!”
Another element of the Son-Rise Program® that I will mention is “joining.” People on
the spectrum often engage in repetitive behaviors. It is generally considered that thesekinds of behaviors are caused by sensory needs that are not met; in fact, just because
someone might engage in these behaviors does not mean they are on the autism
spectrum. However, some forms of autism therapy to try and redirect and stop the
behaviors. We tried redirecting and stopping Lenny’s behaviors, such as when he wouldroll trains on the floor—they made me feel very uncomfortable because each time he didthem, I felt like he was moving further away from the world and going more into his158Autism, Community Building, and Volunteeringown. One of his favorite ones when he was during our time in Hawai‘i was to repeat
phrases from Apple Inc.’s virtual assistant for iOS, Siri, with phrases (English andJapanese versions) like “I’m sorry, I didn’t quite get that” or “I don’t understand.”The Son-Rise approach does not judge these behaviors in a negative way. As opposed
to other approaches, which view repetitive behaviors (often called “stims”) as sociallyinappropriate and requiring redirection or suppression, Son-Rise sees repetitive
behaviors (which Son-Rise terms “isms”) as ways in which people on the spectrum takecare of themselves. Furthermore, it views these behaviors as windows into their world.
So we learned that when Lenny engages in repetitive behavior, we participate with deep
interest and acceptance without trying to change or redirect the behavior. The purposeof this is to develop a relationship of trust.
At one stage, Lenny was often lying on the floor rolling trains up and down andstaring at them. So that is what we did too. If he gave us some eye contact, wecelebrated. If he did not show signs of communication, we joined. The first time we hada real breakthrough with Lenny was in Hawai‘i. We had received some information
about the Son-Rise Program® on joining. One day, Lenny was in the bathroom with
Tomoko, happily chatting to himself in Siri-speak—“I’m sorry, I didn’t get that.” Tomoko
decided to join him by repeating the phrase. He turned to her and smiled, giving her
extended and meaningful eye contact. His action showed him that she accepted what he
was doing, and that it was OK. This was a major breakthrough for us because he had
not given us such powerful eye contact for so long.
This was the point where our family was in early 2015, which is when Tomoko and I
began to think about building a team and creating a community of support for us andLenny.
５．Building a Team, Creating a Community
Why would I discuss about building a community in this context, which is related tothe personal lives of members of my family? In Japan, it has been said that raising achild with “developmental disability” (hattatsu shōgai) such as autism spectrum
disorder requires parents and a support network of at least 8 adults per child. The
reason for building a team was to develop a community of care around Lenny to help
him with his communication challenges, but also to help us as parents. But I also want
to discuss the dynamics of building community in this context.
Our return to Japan highlighted some significant differences that exist with theUnited States. Teruyama Junko, in her PhD dissertation entitled “Japan’s New
Minority: Persons with Hattatsu Shōgai (Developmental Disability)” notes thatJapanese media describe the special education and legal support systems in the US in
relation to hattatsu shōgai as being the ideal model to be emulated (16).
I would say that the chief difference I found is that the onus on the US government to159

『人類学研究所 研究論集』第 7 号（2019）
Research Papers of the Anthropological Institute Vol.7 (2019)provide services; parents have a right to access services. It surprised us in Hawai‘i, forexample, 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 ourrights—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 anddemanding services, particularly when it came to education.
What happened in Nagoya when we got back? Although Lenny received a diagnosis in
Hawai‘i we considered getting one here in Japan. The doctor at our local welfare center
told us that there was no point in her giving a diagnosis because there were no services
available for someone like Lenny. She also noted that Japan was “primitive” (her words)
in its approach to developmental disability. In Japan we decided to apply for day careservices, which involves placing your son under the care of an organization in a house or
facility for a few hours a week. We came across a woman who had two children withspecial needs and ran one of these facilities. The advice she gave Tomoko was this: go to
the local ward office with no makeup on and, if possible, take your child when he is tiredor hungry. He may scream and moan—and that’s how you will get approval for theservices. Sad, but true.
Another fundamental difference between the countries was how parents are involved.
There were a range of options available to parents, apart from those provided by thegovernment. There were parent-run NPOs that obtained significant funding to help
other parents in Hawai‘i, and active engagement to support other parents, particularly
those with relatively new diagnoses. We found quite a lot of activity through social
media among parents and support groups.
There are three aspects of community development in our case that I will mention.
The first is “creating and maintaining a community of volunteers and supporters” whoactually work with us in our home-based program with Lenny. This is a process that
continually develops as we are now running a full-time home-schooling program for him
and we constantly seek support. When we started this in mid-2015, we used Facebook
and the Japanese volunteer recruitment site Boramimi, to recruit a team of volunteers,
and we put up posters at Nagoya University, which is close to our home.
The second aspect of community development is related to “seeking specific support
through the broader community,” which we have done by connecting to the communityof musicians in Nagoya and holding a live event, writing about our journey andappearing on a local podcast, and finally, perhaps most significantly as I mentioned,
running two crowdfunding campaigns in order to support our program, which is costly.
We decided to conduct outreaches, which involve bringing over a senior Son-Riseteacher from the US into our home for intensive short visits and gain insights into how
our program with Lenny was going, which is why we ran the public crowdfunding
campaigns.

One

was

with

the

Japanese160

crowdfunding

platform,

ReadyFor

Autism, Community Building, and Volunteering(https://readyfor.jp/projects/teamlenny); the other was with Generosity (which is nolonger online; Generosity is now part of GoFundMe). Seeking support in this way, in myopinion, also serves an educational function as well—presenting our journey in a publicmanner may help people understand something about autism but it also may support orencourage others going through similar experiences.
The ReadyFor crowdfunding campaign was significant for us because it was the firsttime we managed to connect to people we did not know through social media. One of therequirements of a ReadyFor campaign was to launch a public Facebook page, which we
still have running (although we are not as active as we were in 2016). This was used, in
conjunction with our ReadyFor site, to spread our message. It was through ReadyFor
that I learned of the range of activities being conducted in Japan by other parents,organizations, businesses, even zoos to raise awareness for their cause through theextensive use of social media.
In addition to raising money to fund our program, another aspect of fundraising
activities through social media has been education. One of the outcomes of the
ReadyFor campaign we set was to hold a public lecture regarding our program to those
who had contributed a certain amount of money. This lecture led to Tomoko being
employed by a day care center in the town of Chita in Aichi Prefecture, as mentioned
above, to share with some of the staff aspects of her experience with the Son-Rise
Program®, including her insights into the philosophy of the program. I should stressthat in this work, and in other public lectures we have given, we make sure to tell theaudience that we are not Son-Rise Program® professionals but parents who are runningthe program. The staff of this center have applied the principles to children under theircare and have found them to be effective. Tomoko 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 Ministry of
Education, Culture, Sports etc. in 2007.
When Lenny became of school age in 2018, we began a new phase of our journey. We
approached our local school and mentioned the variety of needs he has—dietaryconcerns, sensory issues, difficulty communicating in groups, amongst others. From ourperspective, 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 workwith age-appropriate materials. To our surprise (and joy, I might add), the school agreed
with this request after we showed them what we have been doing with the Son-Rise
Program® at home.
What I have presented so far may be questioned or criticized for not meeting the“academic” standards such as validity, generalizability, and reliability. And I fully
acknowledge that Delamont’s critique of “lacking in analytic outcome” applies in thiscase. I have described part of my personal experience. Also, we are a bicultural,bilingual family; we can access funds and information from overseas relatively easily
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compared to others. So what kind of contribution can our experience make for families
in Japan?
The more we discuss our story, the more I hear of families experiencing severe
difficulties just living with day-to-day chores as a result of autism spectrum disorder orother developmental disabilities. I understand this issue intimately, from spending
hours and hours trying to understand how to communicate with my son. So not being a“specialist” but rather someone who experiences autism every day has given me someinsight into this.
I do not wish to claim that community building is something everyone who is touchedwith autism will want to aim for. Some people do not want to have their personal
struggles on display and they prefer to try and keep them to themselves. They may notwant to seek others’ support.
What I would like to suggest, and what I would hope for, is that greater awareness of
the kinds of issues that I have presented lead to enhancing and enriching communities
of support for people living with someone with autism spectrum disorder.
What I have learned from this journey is the importance of seeing the lessons that
Lenny can teach me, both about him and his world, and my responses to that. Although
I mentioned “diagnosis and despair,” I can also point to “awareness and hope,” asimportant factors in my experience. What I once saw as crises in my life can actually
become opportunities—and a lot of this depends on my perspectives and attitudes. And,
as a parent, I am finding more and more that rather than clinging on to images of how I
want my son to act, behave, and communicate, it is far more effective to observe what heis doing, listen to what he is saying, and respond to his cues. Once again, this is not a“one-size-fits-all” approach—these are just the lessons that I take away at this point in
my journey.

References
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“The only honest thing: autoethnography, reflexivity and small crises in162

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