By Jim Sinclair © January 2005
The American Heritage(r) Dictionary of the English Language (2000) defines “community” in part as: A group of people having common interests,” “A group viewed as forming a distinct segment of society,” “Similarity or identity” and “Sharing, participation, and fellowship.”
Its entries for “culture” include “The totality of socially transmitted behavior patterns, arts, beliefs, institutions, and all other products of human work and thought,” “These patterns, traits, and products considered as the expression of a particular period, class, community, or population,” and “The predominating attitudes and behavior that characterize the functioning of a group or organization.”
Nearly all the operative terms in those definitions would seem to be at odds with the traditional view of autism as profound impairment in social functioning. Autistic people are seen as lacking the ability to share common interests with others, disconnected from social participation and fellowship, and inaccessible to social transmission of behaviors and attitudes. How, then, can we speak of autistic community and autistic culture?
This article will describe how one particular group of autistic people joined together on the basis of common interests, and grew into a community. Along the way I will tell you a bit about the culture that has developed within that community.
It is my hope that through this introduction to my community, you will begin to reconsider many of the assumptions you may have about autistic social characteristics. Is it always correct to view differences between the behavior of autistics and NTs as “symptoms” of some “disorder” in autistic people? Is it necessarily helpful to respond to such differences by trying to teach autistic people to emulate NT social behaviors so they can “fit in” with NT culture? What alternatives might there be for addressing social difficulties between autistic and NT people? These are some questions you should ask yourself as you read this article.
A disclaimer: I can only report about the culture that has developed within the Autism Network International community. Other autistic communities may have very different cultures. To the best of my knowledge, ANI was the first autistic community to be created naturalistically by autistic people, and it remains the largest autistic-run organization to have regular physical gatherings of autistic people.
Autism Network International was created by a handful of verbal autistic people who had made contact with each other via a penpal list maintained by a parent-run organization.
A few of us had also met each other in person at autism conferences. But typical autism conferences, run by and for NT parents and professionals, do not tend to be very good places for autistic people to connect meaningfully with each other.
There’s simply too much going on–too many people, too much movement, too much noise, often fluorescent lights, and above all, the overwhelming onslaught of speakers and articles and exhibits all stressing that there’s something terribly wrongwith us, that we’re a horribly defective type of human, and that our very existence is a source of never-ending grief for our families.
Some of us came to autism conferences anyway, because we had no other way to meet others like ourselves. But even if we did happen to find other autistic people there, the environment was very hostile from both a sensory and an emotional standpoint.
At best, meeting at conferences gave us a chance to find out about the existence of someone we might want to get to know better, and to exchange contact information so we could follow up later, usually by means of writing letters. Not many of us were on the Internet at the time.
In February 1992 Donna Williams came to the U.S. to promote her first book, Nobody Nowhere. During her trip, she took a few days away from the book tour to visit with Kathy Lissner (now Kathy Grant) and me, two of the autistic people she had been corresponding with through the penpal list. I drove to St. Louis, Missouri, where Kathy lived, and we all stayed together in Kathy’s apartment.
Donna’s description of that visit can be found on pages 184-187 of her second book, Somebody Somewhere. We spent two or three days together, in a place where everyone was autistic, and where there were only three of us instead of a large crowd.
We were all somewhat familiar with each other through our written correspondence; Kathy and I had also met briefly in person at a conference or two. The combination of these factors produced a new kind of autistic encounter that was vastly different from meeting other autistic people at NT conferences. Donna’s description of the experience reads in part:
Despite thousands of miles, our ‘our world’ concepts, strategies, and experiences even came down to having created the same made-up words to describe them. Together we felt like a lost tribe. ‘Normal’ is to be in the company of one like one’s self.
We all had a sense of belonging, of being understood, of being normal . . . all the things we could not get from others in general. It was so sad to have to leave. ‘Why can’t we alllive together?’ we had each asked at some point or other. (p. 186)
My own recollection of this meeting is of feeling that, after a life spent among aliens, I had met someone who came from the same planet as me. We understood each other. At one point I overheard Donna talking on the phone to someone associated with her book tour. Apparently the caller had asked her something about how the visit was going. I heard Donna’s answer: “We don’t get a lot of cooking done, but we speak the same language.”
It was an amazing and powerful experience to be able to communicate with someone in my own language. I had sometimes been able to establish meaningful communication with people before, but it always involved my having to learn the other person’s language and do constant laborious translating. (Sinclair, 1988) Here, with people who shared my language, meaning flowed freely and easily.
We talked a lot during those two days, and laughed a lot, and played around with each other’s fixations, and sat on the floor stimming a lot.
The first time I had met other autistic people, at a conference nearly three years earlier, I had observed the phenomenon of autistic people using their fixations as a bridge to make connections with other people. Now, with Kathy and Donna, I experienced another form of natural autistic social behavior–interactive stimming:
Even before I met Donna in person I had recognized that she must have some visual fixations, because she would always enclose some shiny or brightly-colored object in each of her letters.
When I was going to meet her, I thought of bringing something shiny as a gift, but I didn’t have enough of a feel for it to know what would be appropriate. Then during the time I spent with her, I watched her go into fits of ecstasy while arranging colorful objects and looking at them through a kaleidoscope…. And while she was engaging in this activity of arranging objects and looking at them through her scope, she kept insisting that Kathy and I look at them too.
Of course, being autistic I’m not supposed to understand things like this, but to me that looked suspiciously like a person wanting to share a pleasurable activity with her friends. And for my part, having seen her reach the peak of rapture over an empty Coke can, and having heard her say that metallic red was her favorite visual stimulus, I knew what would be an appropriate gift for her. I got a red sequins-covered belt from Kmart and sent it to her: pretty tacky from a fashion perspective, but just right for someone with her sensory responses. (Sinclair, 1992)
In the years since that first meeting, I have seen this kind of spontaneous sharing of pleasure in fixations and stimming occur again and again among autistic people. It is an aspect of the autistic culture that has evolved within this autistic community.
Besides communication and fun, we also began to glimpse the possibilities of autistic peer support. It’s true, as Donna said, that we didn’t get a lot of cooking done; but what did get done was usually a result of our reminding each other that it was time to eat or that the soup someone had put in the microwave was ready. All of us had significant difficulties managing the tasks of everyday life. But between the three of us, someone was generally able to remember and to remind about the really necessary things.
We speculated that if we could all live near each other, we could divide up the activities of daily living so that each of us would only need to remember and organize 1/3 of the tasks. We could share the responsibility for reminding each other when it was time to cook, eat, bathe, etc.
Thirteen years later this idea of a permanent physical community, where autistic people could live together and support each other, still gets discussed from time to time on the ANI-L email list and at Autreat conferences. Maybe someday we’ll have the material resources needed to try to make it happen.
Autistic adults as a resource for parents
Another dynamic of autistic community–or of autistic subcommunity within a larger NT community–emerged during that first meeting: interactions between verbally proficient autistic adults and parents of less-communicative autistic people.
Each of us individually had a lot of experience interacting with parents of autistic children. What was new this time was the opportunity to interact meaningfully with other autistic people, and the distinction between that and our interactions with parents.
In this case the parents, Rita and Doyle, were actually foster parents. They were knowingly and voluntarily becoming parents of an autistic child, taking into their family a teenager who was completely nonverbal, not toilet trained, not able to feed herself, and was sometimes self-injurious.
Some time earlier, Doyle had posted a query on an Internet forum I was on, asking for advice about teaching his foster daughter to chew solid food. I had noticed that he lived in St. Louis, and had referred him to Kathy because she lived in the same city. Now, with Donna and me coming to town for this visit, he had asked if he could come over and meet us. We agreed to spend a couple of hours with him one evening.
The dynamic of our first meeting with Doyle and Rita was similar to that of many interactions between autistic adults and parents of autistic children within NT-dominated autism organizations (including online forums): They saw us as a valuable resource, and hoped that we would be able to give them first-hand information that would allow them to understand and help the autistic person in their lives.
We were willing to help them if we could, because we did care about the welfare of their autistic child who couldn’t communicate for herself. The NT world might call her “low-functioning” and us “high-functioning,” but we saw her as part of our world. Donna talked to Rita on the phone during the afternoon, and in the evening Doyle came to Kathy’s apartment to meet with us in person. (We did not meet the autistic foster daughter during that visit, but Kathy and I met her at many of our later gatherings.)
As it turned out, this particular set of parents respected us and liked us for ourselves, not merely as tools to help them understand their child. Kathy and I both formed lasting friendships with them, and in the coming years they often opened their home and gave their support to other gatherings of autistic people. When Doyle and Rita, and many other parents, became our friends, we became comfortable sharing our space with them.
They even became important parts of our community. But on that first evening, during our first creation of “autistic space,” we knew them only as non-autistic people wanting to use us as a resource to help them with their child. And we responded with what has continued to be a characteristic feature of the autistic community that has grown from that first meeting: We set boundaries between the time we gave to them and the time we reserved for ourselves.
We agreed to spend some time answering questions about our experiences of autism, but we set limits on how much time. The non-autistic parent came over, we talked with him for a while, and then he went home and we had our own autistic space again.
MAKING IT HAPPEN: THE NEXT STEPS
So–we spent a couple of days together, and we communicated, and had fun, and helped each other, and we talked to parents in the hope that our experiences might help them help their child.
And we decided that autistic space was a good thing for autistic people to have. We decided to start our own organization, rather than continue to be dependent on NT-run organizations to help us find each other and to provide the only places where we could meet.
Since Kathy and I lived about 300 miles apart, and Donna lived on another continent, we had to settle for distance communication: a printed newsletter, and a penpal list for private person-to-person communication.
This was modeled after the parent-oriented organization whose penpal list had enabled us to make contact with each other. But our newsletter would be written by and for autistic people, not just another “parent” newsletter. I volunteered to edit it. That’s how I became coordinator of Autism Network International.
We called it a “network,” not a “community.” At that time, I really didn’t believe “community” would be a meaningful concept for autistic people. We don’t tend to function very well in groups, let alone as groups.
Autistic connections seem to be made on a person-to-person basis, one person at a time. In our new autistic network, as we envisioned it, the newsletter would be the vehicle for information-sharing among the group as a whole, while the penpal list would allow for contact among people who wished to have person-to-person contact.
Defining membership: Who are “we”?
Right away we had to make some decisions about who could be included in our organization: Autistic people only, or would parents and professionals also be allowed to join?
“High-functioning” autistic people only, or all autistic people?
At that time it was still generally believed that “high-functioning” autistic people were a rarity. The term “Asperger syndrome” was just beginning to be introduced in the United States. Autistic people who could speak fluently, who could read and write, who could demonstrate self-awareness and insight into their own experiences, who could participate in higher education, have jobs, and live independently–these were still viewed as novelties, exceptions to the general rule that autistic people are severely learning disabled.
(The fact that while many of us are capable of doing some of those “high-functioning” things, very few of us are actually capable of doing allof them, is still not widely recognized. The tendency is to assume that those of us with a high degree of verbal ability are “high-functioning” in all other areas as well. The reality is quite different.)
Kathy and Donna and I had found each other through a penpal list maintained by an organization of parents of “high-functioning” or “more able” autistic people. We all communicated using language (both oral and written). We all had university degrees. We all lived on our own.
Notwithstanding our various difficulties with sensory processing, social comprehension, emotional modulation, employment, adequate self-care, household management, and assorted other life skills, we were all considered to be “high-functioning.” We could have kept our focus only on other autistic people who were also “high-functioning.”
But we had all fit descriptions of “low-functioning” autistic people when we were younger. We all recognized commonalities between ourselves and autistic people who were still considered “low-functioning.” We also recognized abilities and strengths in many autistic people who just didn’t happen to share our skills in using language.
We decided that our mission was to advocate for civil rights and self-determination for all autistic people, regardless of whether they were labeled “high-” or “low-functioning,” and regardless of whether they were able to participate independently in our language-based network. To that end, we understood that we really had to make our newsletter available to parents and professionals, because educating parents and professionals was the only way we could hope to affect the lives of autistic people who weren’t able to participate on their own.
But we decided that the penpal list was to be confidential, for autistic people only. Once again, we set boundaries between our public activity and willingness to serve as a resource for non-autistic people, and our private autistic connections.
Spreading the word
Kathy immediately began mailing announcements about ANI to all the (NT-run) autism organizations she could find in the U.S.
Donna worked on spreading the word internationally during her book tours. And I, the only one of us who had Internet access at the time, posted announcements online. I was a member of a new online autism mailing list, and for a while I was the only autistic person in that forum. Most of the other members of the mailing list were parents of young autistic children; a few were professionals who worked with autistic people.
As usual for an autistic person trying to participate in an NT-oriented autism forum, most of my participation consisted of describing my personal experiences of autism, and trying to answer parents’ questions about whether my experiences might shed light on their children’s behavior. It was an autism forum, but it was definitely not “autistic space.”
I printed the first issue of “Our Voice,” the ANI newsletter, in November 1992. We had about fifteen subscribers, most of whom were non-autistic parents of autistic children. It was hard to find other autistic people. In terms of numbers, the initial response was discouraging. Hostile responses from established (NT-run) autism organizations were also unexpected and upsetting.
When I had first started seeking to communicate with other autistic people in the late 1980s, I had approached autism organizations and professionals who worked with autistic people, in the naïve belief that they and I, and other verbal autistic people, had some common purpose.
My purposes in seeking to form a mutual aid-self help group for autistic people were to share first-hand experiences to counter the uniformly gloomy and pessimistic (and often offensive and insulting) portrayals of autism in the existing literature; and to advocate for improved support services for autistic people.
(At the time I began my search, I had lost my job and was homeless, but I was unable to qualify for any assistance because I was considered “too bright to be disabled.”)
It seemed to me that these goals ought to be shared by people who were interested in learning about autism or in helping autistic people. But most of the responses ranged from total indifference to empty encouraging words that were not backed up with any action–people would say it sounded like a good idea, but would not run announcements about the project in their newsletters or put other verbal autistic people in contact with me.
The only two exceptions to this pattern were the organization for parents of “more able” autistic people, which occasionally printed letters from autistic people and maintained the penpal directory through which I eventually contacted Kathy and Donna; and an autism professional who arranged a scholarship for me to attend a conference (the first autism conference I ever attended, in fact), and set aside a room during one of the conference sessions for any autistic people who wanted to meet.
No other newsletters were printing our letters, no other conferences were facilitating contact among autistic people, and no one else was offering any practical support whatsoever to autistic peer contact. (A few professionals, though, did take advantage of my meetings with them to ask me personal questions about my experience of autism.)
Even worse, it seemed that when we did manage to find each other and work together to further our goals, responses from the “autism establishment” escalated from indifference to active subterfuge. By the summer of 1991, several of us had made contact with each other via the penpal directory, and the 1991 Autism Society of America national conference was the first conference I attended where I met autistic people whom I already knew.
Several of us made a point of asking questions or making comments during the question-and-answer portions of as many presentations as possible, always identifying ourselves as autistic people. The presenters seemed pleased with our contributions, and a great many audience members sought us out afterward to talk to us and ask us questions.
Our visible presence at the 1991 conference, and the obvious interest many parents had in meeting us, drew the attention of the ASA Board of Directors. Two of us were approached by a Board member and some other parents, and asked if we would like the Board to help us form a committee that would be advisory to the Board and would have some input into ASA and its future conferences. We accepted on the spot. We were told that our committee would be allowed to have a representative present at ASA Board meetings; would have some input into planning the 1992 national conference (both in the organization of facilities to be accessible to autistic people, and in the selection of presentations); and would be given space in the ASA newsletter. In addition, when we told them that we were already working on forming an organization of our own, they offered us some unspecified amount of financial and/or administrative support for creating our own autistic self-advocacy organization.
None of these promises was honored. The only mention the ASA newsletter carried of our attempts at autistic self-advocacy was an item in the précis of the July 1991 Board meeting, authorizing one of the Board members to take charge of organizing an advisory committee of autistic people–and we never heard from them again about that committee, despite several follow-up phone calls I made. One of the ASA Board members later confirmed my suspicion that these offers were merely empty gestures by a Board that wanted to impress parents of autistic people–who hold most of the voting power in ASA–but who didn’t expect to have to follow through because they never expected autistic people to be capable of organizing ourselves.
When, contrary to expectations, we did begin organizing ourselves and announced the establishment of ANI, ASA continued to ignore the announcements we repeatedly submitted for inclusion in the newsletter. But now there did begin to be some acknowledgment of the existence of autistic people trying to self-advocate, in the form of rumors started by some ASA Board members to the effect that I was not really autistic. (This despite of the fact that my records had been reviewed by two psychologists who were members of the ASA professional advisory board, and both had stated–one of them under oath at a rehabilitation services hearing–that I am indeed autistic.)
In a clear attempt to undermine our group cohesion, Kathy and some other autistic adults were directly “warned” that I was not what I claimed to be. Meanwhile, Donna was encountering similar denunciations as her book began to receive international attention.
Contexts and politics of opposition to self-advocacy
At the time all this was happening, it took me completely by surprise. Nearly all of us who were involved in the earliest period of ANI had met many parents of autistic children, at conferences and local parent support groups.
Almost invariably, the parents were pleased and excited to hear from us. True, their primary interest was in using us as resources for their children rather than supporting us in our own goals; but still, they were not hostile toward us. It seems that one autistic person at a time–and preferably a passive one–might be welcomed as an interesting novelty or an amusing diversion or possibly even a valuable source of information and insight.
But autistic people organizing together, autistic people pursuing our own interests rather than furthering the interests of parents and professionals–suddenly we were perceived as a threat.
Only several years later, while researching the history of self-advocacy by disabled people (Sinclair, 1996), did I learn of the long history of similar opposition to attempts at self-advocacy and self-determination by people with a variety of disabilities (Kugelmass, 1951; Putnam, 1979; Williams & Shoultz, 1982; Van Cleve & Crouch, 1989; Lane, 1992; Shapiro, 1993; Christiansen & Barnartt, 1995; Dybwad & Bersani, 1996; Kennedy, 1996).
Any attempt by a group of disempowered people to challenge the status quo–to dispute the presumption of their incompetence, to redefine themselves as equals of the empowered class, to assert independence and self-determination–has been met by remarkably similar efforts to discredit them. The discrediting tactics used most frequently are:
1) If at all possible, to deny that the persons mounting the challenge are really members of the group to which they claim membership.
This tactic has been used against disability activists with learning disabilities and psychiatric disabilities as well as against autistic people. As people with these disabilities often look “normal” and the disabilities are all defined in terms of behavior rather than empirically measurable physical differences, many of us have been told that the very fact that we are able to express ourselves, object to the ways our freedom has been restricted or our rights violated, and demand change proves that we cannot truly be autistic, or learning disabled, or psychiatrically impaired.
2) If there is incontrovertible evidence that the activists are members of the affected group, to aver that they are rare exceptions who are so unlike typical members of the affected group that what they have to say is irrelevant to the group as a whole.
Michael Kennedy, who obviously and indisputably has cerebral palsy, explains the destructive impact of this tactic:
When people tell me that I am “higher functioning” than the people they are talking about, I feel like they are telling me that I don’t have anything in common with other people with disabilities. It’s like they are putting me in a whole different category and saying that I don’t have any right to speak.
It upsets me because I take it that they don’t want to give anyone else the opportunities I have been given, and that what I say can be ignored because they see me as more capable. It is a way of dividing us and putting down those who have more severe disabilities or who haven’t had the opportunities to experience different situations in life. (Kennedy, 1996)
3) If it is not possible to deny that the activists are authentic representatives of the affected group, to appeal to the very prejudices and stereotypes the activists are seeking to overturn, and use those prejudices and stereotypes to claim that the activists are incapable of fully understanding their situations and knowing what is best for them.
Often this approach incorporates the belief that disabled people need to have their freedom restricted for their own good, to protect them from coming to harm through their inability to act in their own best interests.
These strategies to undermine credibility are not new, nor are they limited to situations involving disability. Frederick Douglass was a nineteenth-century African American who escaped from slavery in 1838 and became a well-known abolitionist writer and speaker. In his 1855 autobiography My Bondage and My Freedom, he recalled that at the beginning of his career speaking to white audiences about the evils of slavery, he was presented as something of a curiosity.
Most anti-slavery lecturers where white; lecturers who were themselves fugitive slaves were a rarity. As the novelty wore off, people began to doubt that he had ever been a slave. He was suspected of being an impostor because he was too educated and too well-spoken to fit prevailing stereotypes about the ignorance of slaves.
He also expressed frustration with white abolitionists’ demand that he confine his speeches to simply recounting his personal experiences of slavery, and allow white people to elaborate on what they meant: “Give us the facts, we will take care of the philosophy.” Eventually Douglass stopped working for white abolitionists and started his own anti-slavery publication.
BECOMING A GROUP, ONE PERSON AT A TIME
In the spring of 1993 I received a telephone call from Katherine, a woman who had just been diagnosed with Asperger syndrome after years of being labeled with an assortment of other “disorders” and “disturbances.”
The clinician who diagnosed her had also given her contact information about ANI. That in itself was a very encouraging development: A newly-diagnosed autistic person had immediately been referred to a network of autistic peers, instead of being given the usual clinical information about all the things that were “wrong” with her. Having finally found out why she had spent her entire life being, in her words, “an alien,” she was interested in meeting other autistic people.
It happened that I was going to be traveling through St. Louis in the near future, so I suggested another meeting there. Katherine came to St. Louis and met with Kathy and me, as well as Kathy’s fiancé Ray, Doyle, Rita, and their family. She wrote of the experience:
For me, this day will become an anniversary that I will celebrate with great joy. It marks the beginning of not being an alien. It will be a day of validation. A day to set aside and remember.
That night [first night after arriving] in my journal I wrote that if nothing else of significance happened during this trip that one experience of being understood was worth all the time and expense of coming to St. Louis. I went to sleep feeling I belonged.
My visit to St. Louis literally changed my life. I now know that there is a group of people I can spend time with who do not expect me to be any certain way.
Not many things surprise them, nor do many things offend them. They do not try to make me like them. They accept my interests and don’t try to change them. I believe all persons with Autism need the opportunity to become friends with other Autistic people.
Without this contact we feel alien to this world. We feel lonely. Feeling like an alien is a slow death. It’s sadness, self-hate, it’s continuously striving to be someone we’re not. It’s waking up each day and functioning in falsehood. (French, 1993)
Katherine’s experience mirrored that of Kathy and Donna and myself when we had first met and created an autistic space. This experience was repeated with more people as ANI expanded. While we were not successful in reaching large numbers of autistic people via announcements in established autism publications, autistic people began to find us, one by one.
(As an aside, I felt a great deal of personal pleasure and satisfaction in watching Katherine have the same kind of magical “first contact” experience that I had had the year before. At a later gathering where we welcomed two additional autistic people for their autistic first contact, Katherine expressed to me that she was happy to be part of creating that experience for them.
Facilitating these kinds of first contact and homecoming experiences for autistic people continues to be one of the most rewarding parts of my work as coordinator of ANI; this sentiment has often been expressed by other ANI members about welcoming newcomers. Where is the famed autistic lack of empathy?)
Looking back at this period of ANI’s history, I think it’s best that it happened the way it did.
A large influx of new members all at once might have made for a larger and (perhaps) more organized political force; but it probably would have precluded our coming together as we did, one person at a time, building the personal connections that allowed us to learn how to share our lives with each other.
Organizations may be built upon goal-oriented or idea-oriented networks. But as ANI has developed, contrary to my own expectations, into a true community, I have come to understand that community is built on intersecting networks of interpersonal relationships.
Autistic people have characteristic difficulties with person-to-group relationships, but many of us are quite capable of establishing and maintaining person-to-person relationships.
Routes to ingathering
During the early years there were two main avenues by which new autistic members made contact with us: online, in the parent-oriented autism forum mentioned earlier; and at conferences.
Online parents’ forum
Sola Shelly (2003) describes the way a typical online contact would begin:
As the only public forum about autism at that time, it was the first place that newly diagnosed HFAs (adults and adolescents) turned to for support. It was neat to watch this: Someone would appear, and either tell about recently being diagnosed, or just learning about autism and finding out how “things fall into place” when many of his or her difficulties and otherwise abnormal characteristics could be accounted for by autism.
Then the person would get replies from other HFAs, comparing notes, offering support. In many cases, the person would express a feeling of finally finding his own kind, as if he or she was an alien who had been stranded on this planet, and now has found other aliens who were from the same planet.
As had been the case when I was the only autistic person there, forum participation by autistic people consisted mostly of posting narrative descriptions about our lives and being questioned by parents seeking to understand their autistic children. But as more autistic people began participating, an increasing number of forum messages began to consist of peer communication between autistic people. Private email correspondences also developed among autistic people who had initially made contact on the forum.
Among the autistic people who learned about ANI and began communicating with other autistics via the Internet forum, a few established personal relationships and eventually became interested in meeting their online friends in person.
Kathy and I, and Rita and Doyle and their children, continued to meet occasionally in St. Louis. After I moved to Syracuse, New York, in 1994, my house became another location for autistic visits. These gatherings were sometimes the occasions for first meetings with new online friends.
Kathy and Ray’s wedding in 1994 featured both the presence of a contingent of autistic friends among the many non-autistic family and community members, and autistic cultural influences on some of the wedding customs: Kathy’s fixation with flags was incorporated into part of the ceremony itself, and several of her autistic friends presented her with decidedly non-traditional gifts (such as a used book in Russian that had been discarded by a library) relating to her special interests and fixations.
Becoming a presence at autism conferences
A growing number of us were attending NT-run autism conferences. Some of us were even being invited to speak at conferences.
But now we weren’t just isolated individuals lost in the chaos of the conference. More of us were already acquainted with each other before attending a conference, and were able to plan in advance to get together at the conference.
At the group level, ANI began to exhibit at conferences. Being a conference exhibitor meant that we had an assigned booth or table in the exhibit hall, where we could set up displays and hand out information about ANI. The ANI exhibit became a kind of home base for autistic people during the conference.
While the exhibit halls were usually noisy and crowded, there was space behind the table (and also under the table) where a few people could sit and not be jostled by the crowd. Despite the difficult sensory conditions and the pervasive negativity of the rest of the conference content, autistic people would gather at the ANI exhibit to talk, laugh, stim, and revel in each other’s company.
We also found places to gather after hours. While NT conference participants were attending banquet dinners or entertainment performances or other large-group activities, autistic people in pairs and small groups were finding quiet spots in hallways and cloakrooms and parking lots.
Most of us couldn’t afford rooms at the expensive hotels where the conferences were held (I often slept in my car while attending conferences), but if someone did have a hotel room, that became another enclave of autistic space.
Finding “home”–or creating it
This kind of live contact was not something that was of interest to every autistic person we encountered online.
Obviously if someone wasn’t interested, he or she did not choose to come to in-person gatherings. But for those of us who did come to them, often driving hundreds of miles and sleeping in our vehicles or on the floors of other people’s rooms, there was a powerful shared will to make contact with others like ourselves.
Our autistic contacts came to be a very important part of our lives. Many of us had never had friends before, and had difficult relationships with our families. Finding people who actually understood us and liked us, and whom we understood and liked in return, was a life-changing experience.
ANI had an exhibit table at one particular conference in St. Louis in early 1994. Doyle was able to arrange for a group of us to camp indoors on an empty upper floor of a large office building near the downtown conference center.
All the interior walls on that floor had been knocked out for a not-yet-completed renovation process (except, fortunately, a restroom remained intact with walls and a door). Naked support beams were exposed throughout the space. Bits of crumbled plaster and other building materials were everywhere.
Piles of debris lurked in corners and against walls. There was no furniture; we brought our own mats and sleeping bags, as well as a couple of floor lamps, and some empty refrigerator boxes for anyone who wanted to sleep in one or needed to retreat alone to a dark enclosed space for a while.
In this huge, dim, dusty, cavernous space, eight adults, along with Doyle and Rita’s young son (who was not disabled), spent the weekend. During the days we went to the conference, took turns staffing the ANI exhibit and talking to curious parents, and listened to presenters talk about all the tragedies of our lives. In the evenings we returned to our “cave,” which, like a legendary faerie hill, was transformed into a magical place of celebration.
During our second day of camping out in this building, Doyle pointed out the window at a radio tower and mentioned that it was for sale. He jokingly asked me if I thought we should buy it. I asked what possible use we might have for a radio tower. Then I looked around the room and, in keeping with our frequently shared experience of having always felt like aliens on Earth, I remarked that we could use the radio tower to send a message to the “mother ship” (a common reference in science fiction stories), telling it that we were all together now and it could come retrieve us and take us home.
But I’m glad there was no spaceship to come get us back then. We’ve found so many more of our people since that day, and there are still many more wishing and searching for a community to come home to. We’ve come a long way toward creating a home for ourselves right here on Earth.
Autistic people, like any other group of people, are not all alike. We don’t all have the same needs and desires for social interaction. Some of us don’t get along with others of us.
There have been misunderstandings and disagreements among us, hurt feelings, lost friendships, and worse. One extremely persistent autistic predator has harassed and terrorized enough members of our community that we stopped publishing our penpal list, developed security procedures to verify the identities of people applying to join our Internet forum, and established a policy of not publicizing the location of our gatherings.
Less dramatically, some autistic people have made contact with some aspect of our community, decided they weren’t interested or didn’t like it, and gone away.
ANI is no longer the only autistic community in existence, and it’s not what every autistic person needs or wants. Some autistic people may find other organizations or communities more to their liking. Some autistic people may not be interested in autistic organizations or communities at all.
The characteristics of our particular autistic community result from the characteristics of the particular people who have become active participants in it. Some of these characteristics are:
- Probably the most central shared value of the ANI community is that it’s okay to be autistic–it’s not “wrong” for us to be the way we are, and it’s not our goal to become (or to learn to emulate) NTs. Autistic people who value “passing for normal,” or who do not want to be associated with people and with behaviors considered to represent “low-functioning” autism, are likely to be uncomfortable with the range of members and the openly, unashamedly autistic behaviors that are welcome in ANI.
- We are not as politically intense as some autistic activist organizations (mostly because we aren’t organized enough to engage in much political activity as a community), but we are firmly aligned with the disability rights movement. Both autistic people who want more organized political activism than ANI engages in, and autistic people who prefer to avoid any political controversy at all, are likely to be unhappy about ANI’s level of involvement with disability politics.
- We have a lot of members who have sensory sensitivities, and who want community norms that protect them from overstimulation. While we have tried hard to accommodate the needs of as many autistic people as possible, those who are very loud, are prone to touching people without invitation, or have other behaviors that create sensory distress for sensitive people may feel uncomfortably constrained by our requests for self-restraint and consideration for the sensitivities of others.
- We are not a separatist community. Autistic people who want contact only with other autistic people, and want no contact at all with NT people (this attitude is usually a reaction to a lifetime of coerced contact and pressure to behave like and socialize with NTs), are likely to be unhappy about the involvement in the ANI community of many NT family members and friends of autistic people.
- We are an autistic-run community. Non-autistic people may participate, but decision-making power and organizational leadership are held by autistic people. Given the nature of autism and the prevalence of difficulties with executive functioning, we are often less organized and less efficient than NT organizations. Despite our best efforts, there’s a certain amount of disorganization and unpredictability that we have not been able to overcome. Autistic people who can’t deal with that are likely to find ANI events very frustrating. (As a matter of fact, I find ANI events very frustrating, because they overtax my organizational skills. But I put up with the inevitable frustrations, because the rewards of participating in this community make it worthwhile to me.)
- Those amazing and powerful experiences of finding kindred spirits, while common, are not universal. When they do happen, they seem to happen to people who were not expecting them. People who come to ANI seeking information about autism so they can better understand themselves, or help with practical solutions to everyday challenges, or simple affirmation that being autistic means more than just having a collection of deficits, tend to be the most satisfied with what they find. If they also happen to find personal friendships or a feeling of belonging in the group, these are most likely to come as surprises.
- In terms of social motivation, we have members who are outgoing and effusive, and members who are reserved and withdrawn, and members who are everywhere in between. As with sensory sensitivities, the community norms that have developed within ANI have mostly been concerned with protecting the more sensitive members from unwanted social pressures. While many people have been fortunate enough to form rewarding friendships with other ANI members, we do not recognize any social obligation on the part of any person to have a personal relationship with any other person. People are likely to be disappointed if they join ANI expecting that all the other members will automatically like them and befriend them and want to socialize with them, or will automatically agree with all their opinions and have the same life experiences they’ve had.
If an autistic person’s needs and expectations are not compatible with what ANI has to offer, then the person might be disappointed in ANI. There are also reasons why ANI might ban some autistic people from participation (e.g., the person who harassed so many of our members).
Autistic people as a group are not all innocent and perfect. ANI as a community is not ideal for every autistic person. It has become the community that it is, in consequence of the people who have come together and stayed together to create it.
Over the years, some people have left and others have arrived. Some long-time members have changed their perspectives or their priorities. These changes have been reflected in the evolution of community customs and the availability of community resources.
FROM “NETWORK” TO “COMMUNITY”
During 1993 and 1994 several critical events occurred in ANI’s development from a network of personal acquaintances into a community.
The International Conference on Autism, a joint conference of the Autism Society of America and Autism Society Canada held in July 1993 in Toronto, was the springboard for these events.
In many ways this conference was similar to other autism conferences that our small group of friends had been involved with. Several of us who had met before, plus a few people who were coming to meet ANI members for the first time, arranged to drive together or to meet at the conference.
A group of us stayed together at a campground on the outskirts of the city, and carpooled daily to the conference hotel. One of our NT-parent members offered the use of her hotel room as a gathering place for evening discussions among autistic people. ANI had a booth in the exhibit hall. All this had become fairly routine to us by now.
“Don’t Mourn For Us”
The first thing that made this conference different from earlier ones was my presentation. I had spoken at conferences before; usually I had been asked to simply describe some aspect of “what it’s like to be autistic” and then answer questions from parents.
This time I had a message of my own that I wanted to present. I had submitted it the previous year for the national Autism Society of America conference, but the ASA president had taken the unusual step of personally instructing the conference planning committee not to accept it.
I submitted it again for the international conference in 1993, and the Canadian host organization accepted it. And so it was at this conference that I presented “Don’t Mourn For Us” (Sinclair, 1993), directly challenging the “autism as tragedy” paradigm upon which the conference–and its sponsoring organizations–were based.
This presentation drew a lot of interest to ANI. While some people strongly disagreed with it (I still get occasional hate mail about it even now), the more common response was (and still is) positive.
Strangers and cousins
The increased attention generated by my presentation drew more people to come to the ANI exhibit for information about us, and many of them became members.
We were reaching the point at which our members no longer all knew each other; individual ANI members could be strangers to each other. For ANI to continue as a meaningful social entity, it had to be an entity that provided a common “home” even for people who did not have personal relationships with each other. I think it is this sense of being a “home”–a context for people’s lives as a whole–that distinguishes a community from a simple organization.
Another development during the 1993 conference was the recognition of a new segment of the ANI community, and the adoption of a new term to refer to it.
One of the people who had been corresponding with ANI members online, and was attending this conference to meet with us in person for the first time, was not autistic. He had hydrocephalus, another congenital neurological abnormality.
In our online discussions he had been noticing many similarities between his experiences and characteristics as a person with hydrocephalus, and the experiences and characteristics of autistic people. At the conference he met Kathy, who was not online at the time and did not know who he was. He introduced himself to her, explaining that he was interested in exploring similarities between himself and autistic people.
He briefly summarized the effects of hydrocephalus in his life. Kathy considered this for a moment, and then warmly exclaimed “Cousin!”
(Cousins, 1993). From that time on, the term “cousin” has been used within ANI to refer to a non-autistic person who has some other significant social and communication abnormalities that render him or her significantly “autistic-like.” The broader term “AC,” meaning “autistics and cousins,” emerged soon afterward.
A further consequence of the 1993 conference was a huge spike in autistic conversation on the Internet autism forum after the conference was over.
By this time there were enough autistic people on the forum that when we all started posting at once, the NT parents (who were still the great majority) noticed a dramatic increase in the amount of message traffic. And this barrage of new messages was from autistic people (and one cousin), excited from having been together at the conference, missing each other now that the conference was over, communicating with each other in some very autistic ways: lots of perseveration on details of things that had happened at the conference, lots of echoing each other’s messages, lots of autistic humor that few of the non-autistic people could understand or appreciate. Before long, even autistic forum members who had not attended the conference were participating in the post-conference message explosion.
Some of the NT members began to post irate replies demanding that we stop “wasting bandwidth” with messages that were not of interest to them. We replied that our conversations were of interest to us, and we were members of the forum too, and autistic people ought to be allowed to communicate with other autistic people on an autism forum.
Several parents supported us. But other parents countered with angry accusations, attributing a variety of sinister motives to our autistic conversations. Some of us responded with angry accusations of our own, expressing frustration that these parents were happy to have us participate in the forum when we served theirpurposes (i.e., when we answered their questions and allowed them to use us as resources), but were not willing to respect our wish to engage with each other on the forum.
The ensuing flame wars became known in ANI as the Snore Wars, because some of the autistic messages the parents first began complaining about were playful perseverative discussions about someone’s snoring at the conference.
A series of similar flame wars occurred over the next year or so: Any time autistic people became particularly active on the forum, or affirmed the sentiment that autism is something other than a devastating tragedy, there would be accusations and attacks from parents. This left most of the autistic members feeling that the forum was now a hostile place for us.
We decided that we wanted our own Internet forum. After having experienced coming together physically to create autistic space, we were now ready to create an autistic cyberspace.
At that time there were not yet any public Internet sites such as yahoogroups to host email forums.
We had to use a listserv on an academic server. One of our autistic members set up ANI-L, the Autism Network International listserv, on a server at his university. We launched our new forum in the fall of 1994.
In 1996 our member’s university announced that it was going to discontinue the server, and we moved ANI-L to its current home on the Syracuse University server under the sponsorship of a university faculty member. (That move represented the first time ANI had ever accepted any kind of sponsorship from a non-autistic source.
“By autistics for autistics” has always been a core value of ANI. We do as much as we can for ourselves, and rely as little as possible on non-autistic people to take care of ANI business for us.)
In many ways, starting our online forum was similar to starting our newsletter in 1992. We had a strong commitment to the concept of autistic space, where content would be determined by the interests of autistic people. We needed to decide once again who would be eligible for membership.
This time, due to the vicious attacks we’d been subjected to by some of the parents on the public autism forum, there were a number of autistic people who felt strongly that our forum should be for autistic people only.
But ANI had always allowed parents to participate in its activities, and some of us felt that it was important to remain open to those parents who supported our values and our goals.
Rules and divisions
In the end, we settled on a decision to allow NT people to join, but only after securing their agreement to abide by a set of forum policies designed to ensure that ANI-L would remain an autistic forum (www.ani.ac/ani-l-info.html).
These detailed rules were developed from within our community to address members’ concerns and to prevent the occurrence in ANI-L of many negative experiences we had had in the NT-dominated public forum. All new members, NT or AC, are required to read them and agree to honor them.
As further compromise, we opened the forum with just autistic people and cousins at first. NT people were allowed to start joining a little later, after the AC members had settled in and gotten some conversations underway. When NT people began joining, we appointed two parents and a professional whom we trusted to be parent moderators. It was their job to make sure parents understood the forum rules, and to respond to parents who got out of line (e.g., by insulting autistic communication styles) so the AC listowners would not have to deal with hostile parents.
Shortly after ANI-L started we instituted another safeguard for the comfort of autistic people who were concerned about dynamics between autistic adults and NT parents of autistic children. We subdivided the forum into an “AC” section for messages of interest to autistic people and cousins, and a “Parents’ Auxiliary” (PA) section for messages about parenting (or otherwise providing care and support for) autistic people. Another set of rules was developed for determining what messages belong in each section (www.ani.ac/ani-l-PA.html). These sections are not meant to segregate people according to their status as AC or NT. Any forum member is permitted to post messages in either section. The sections are to indicate message content:
- Some autistic people are willing to talk with parents about the parents’ concerns regarding their autistic children. Those autistic people who choose to read messages about parenting, and possibly to respond to them, can participate in the Parents’ Auxiliary section. But other autistic people find it very disturbing to be treated as a parent resource when they enter a forum for the purpose of having peer contact with other autistics. This was a particularly sensitive issue at the beginning, because of the recent clashes with parents on the public forum. Those people who do not want to read messages about parenting can stick to the AC section.
- Similarly, some parents and professionals are happy to read, and perhaps participate in, autistic people’s discussions about whatever might happen to interest us. They are welcome to participate in the AC section, where they relate to us as friends. Others do not have the time or the interest to read our sometimes meandering, sometimes perseverative, sometimes just plain weird autistic conversations, but they are interested in talking to other parents (and any autistic people who choose to participate) about raising autistic children in an accepting and supportive manner. They can stick to the PA section.
Sorting the messages by topic allows each member to choose which subset(s) of messages he or she wants to receive. Since the initial decision to subdivide the forum, we have added three more sections: a Disability Rights section for discussion about rights and disability politics; a Conference section for discussions and planning regarding physical gatherings; and a Virtual Party section (which is not used much anymore) for special occasions when a lot of playful messages would get posted in a short period.
Virtual parties were a way for us to communicate in near-realtime, before online chat became widely available. We would set a time, and everyone wanting to attend the virtual party would go online at that time and start posting email messages to the virtual party section. Since we were all online at the same time, we could respond to each other’s emails very quickly.
Space and healing
When we first introduced the division into sections, there was a lot of anxiety especially among parents, some of whom thought they were only allowed to post messages in the PA section even if they were replying to messages posted in the AC section.
There was vigilant turf protection by autistic people, who were quick (though usually not aggressive) to correct parents who posted parenting-related messages in the AC section. There were sometimes complaints by autistic people about feeling uncomfortable with the content of some messages by parents or professionals.
These issues became the subjects of sometimes intense discussion, not just by the listowners and parent moderators, but by the ANI-L membership as a whole. For the most part, our NT members have been respectful of the concept of, and eager to learn how to behave as guests in, autistic space.
For the most part, our AC members have been patient with each other and with NT members, and have tried to be helpful when anyone was confused or uncomfortable. As the listowner who has been most active in responding to policy questions and interpersonal conflicts on ANI-L, I quickly came to appreciate the wonderful way our members have of working things out together.
Very often if someone asks a question about the forum policies, or if someone flagrantly violates forum policies, or if people start having a disagreement that escalates beyond the bounds of civility, other members have already stepped in and started dealing with it by the time I read my email and find out there’s been a problem.
Over time, the use of the AC and PA sections has changed. There is much less concern expressed now about messages being posted in the wrong section. While there are still some messages that clearly belong only in one section and not the other, for the most part the AC and PA sections now function together as the “social” component of the forum, and members very often post conversations about their personal lives and personal interests to both sections.
We introduced the AC/PA division as a way to allow space for some wounds to heal. I think the preponderance of messages now posted to both AC and PA is an indication that healing has taken place.
ANI-L quickly replaced the printed newsletter as the primary vehicle for communication among ANI members. Private correspondences, personal friendships, and visits in person have continued to occur among people who meet first on ANI-L.
For several years after ANI-L was established, some members continued to participate in the parent-dominated public forum, or to monitor it for new autistic arrivals. Many autistic people continued to join the public forum seeking information. ANI-L members would tell them about the existence of ANI-L, and often they would join, especially after becoming disillusioned with the hostile climate on the public forum.
A number of parents of autistic children also came to ANI-L through this route, finding our philosophy more to their liking than the grief-wallowing and cure-seeking that characterized the public forum. It was not uncommon to see posts in which one ANI-L member referred to another member’s having “rescued” him or her from the public forum.
Today, there are many different online autism forums, some primarily for parents and some for autistic people. There is no longer a single forum that most people find first when seeking information about autism.
A NEW LEVEL OF CONFERENCE INVOLVEMENT
In November 1995, an organization for parents of “high-functioning” autistics held its first conference.
During the early stages of planning for that conference, the president of the organization contacted me and asked if I would arrange a separate strand of conference sessions that would be of interest to autistic people. I made this an ANI project, and planning the ANI strand for the conference became another topic of discussion on ANI-L.
We put together a program of sessions, nearly all of them presented by autistic people. The topics of our sessions included school issues for autistic children, autistic family relationships, approaches to supported living (including both ways autistic people can receive support, and ways autistic people can provide support to others), autistic community, political implications of medical research, asexuality, and a panel discussion about what our autism means to us.
Innovations for autistic accessibility
We spent a lot of time planning ways to make this conference more autistic-friendly than most autism conference we had attended. Three things we did for that conference, that have remained parts of our own Autreat conferences, are:
1) We requested that the conference organizers provide a room for autistic people to retreat to during the conference, to take a break from sensory overload and from NT social pressures. We placed a lamp with an incandescent bulb in the room, and kept the overhead fluorescent lights turned off. We put some refrigerator boxes in the room. We originally called this room the “Quiet Room,” but subsequently some ANI members who had experienced institutionalization pointed out that in many psychiatric institutions, “Quiet Room” is a euphemism for a room people are locked into for involuntary seclusion. We now call our Autreat break room the “crash room.”
After we introduced the use of a crash room at this conference in 1995, we were pleased to start noticing that some other autism conferences also began providing crash rooms for autistic attendees.
2) Even verbal autistic people are likely to have difficulty being verbal all the time, especially under conditions of sensory overload such as are likely to occur at a conference. Many of us had found ourselves struggling with speech shutdown at conferences. Non-autistic people would want to talk to us, when we needed to be left alone for a while. Of course we could always leave and go off somewhere by ourselves; but sometimes we were still interested in listening to presentations or being around our friends, even when we weren’t up to having interactions. After discussing these situations on ANI-L, we created color-coded interaction signal badges. These were plastic name badge holders, with a piece of red paper on one side, and a piece of yellow paper on the other side. People needing to restrict interaction could wear a badge with the red side facing out to signify “Nobody should try to interact with me,” or with the yellow side facing out to signify “Only people I already know should interact with me, not strangers.”
The interaction signal badges were easy for autistic people to use, and easy for both autistic and non-autistic people to understand. We still use them at Autreat. In 1997 we added a third color to the badges, in response to a concern expressed by an autistic person who was planning to attend her first Autreat, and said she sometimes wanted to interact with other people but had trouble initiating an interaction. We added a piece of green paper to signify, “I want to interact but am having trouble initiating, so please initiate an interaction with me.”
3) Many of us had had very stressful encounters with non-autistic people at autism conferences. We compared notes, and came up with a list of common unpleasant behaviors that included sensory assaults, persistent and intrusive questioning (some of us who were frequent conference presenters had been followed to our hotel rooms or phoned in our rooms by parents wanting to ask us questions; one person reported having been followed into the restroom by a parent who refused to stop demanding answers to questions), demands for NT-style social interactions, and treating us as parent resource material instead of as people. (I eventually coined the term “self-narrating zoo exhibit” to describe the role we are often expected to play in NT-centered autism forums and conferences.) We drafted a list of guidelines for NTs at the conference, detailing how we wanted them to interact with us. Our guidelines were printed in the conference program book, and we also had copies of them at the ANI exhibit at the conference. These guidelines have since evolved into guidelines for everyone to treat each other considerately at Autreat.
Good news and bad news
It was empowering for us to work together on ways to make the conference experience better for autistic people. It was refreshing to be given an opportunity to decide what topics we wanted to see presentations about, and to have autistic presenters speaking on substantive issues rather than being put on display as self-narrating zoo exhibits. It was exciting to plan for a larger live gathering of ANI members than had ever occurred before (including attendance by at least a couple of people from outside North America).
But this was not “our” conference. A parent-centered organization and a university department were in control of the event. When the organizers first contacted me, they had indicated that ANI would be a full partner with them in conference planning. That was just the first of many promises they failed to honor. During the months of conference planning, they consistently excluded ANI from planning meetings, even from those aspects of planning that directly affected our strand of sessions. Their behavior toward us ranged from condescending to controlling to outright dishonest.
At one point during the conference planning one of the organizers told me that the conference was only for “high-functioning” autistic people and their families, and that I should instruct “low-functioning” ANI members and their families not to attend. I am proud to report that I disregarded this instruction. At least one non-speaking ANI member did come to the conference with his parents. They attended the sessions in the ANI strand, and they later became regular participants at Autreat as well.
Difficulties with the conference organizers continued during the conference. Several of our members were treated rudely or condescendingly by conference organizers. There was more attempted interference with peer support among our members: As usual when ANI members used conferences as occasions to get together, some people who came had very little money, could not afford hotel rooms, and could not afford the high prices of meals in the hotel restaurant. And as has been the case since the founding of ANI, members of our community did their best to look out for each other. Some of our less-impoverished members had donated a supply of crackers, peanut butter, pasta cups, and microwaveable soup cups to make sure nobody starved. The hotel management had no objections to our keeping this box of food behind the ANI exhibit for low-income autistic people to take as needed. But the university conference coordinator (who did not work for the hotel, but for one of the conference co-sponsors) tried to forbid us to give food to hungry people. At one point she was screaming at me that we had to remove the food immediately because the hotel wouldn’t allow it, even as hotel employees were bringing us an extra table to put the food on.
After the conference, the organizers barely acknowledged ANI’s contributions, even though our sessions were well attended and well received (by many parents as well as autistic people). An unhappy discussion occurred on ANI-L. Interestingly, it was mostly parents who expressed indignation over the lack of acknowledgment of ANI. Those autistic people who had been heavily involved in planning our part of the conference had other complaints, about the disrespectful and paternalistic ways we had been treated.
One day the president of the conference organization phoned an ANI member and verbally abused her for sending a post to ANI-L expressing disappointment about how the conference organizers had treated ANI. ANI-L is a private forum. Every member agrees to a confidentiality policy. The conference organizers were not members of ANI-L. We never did find out who leaked the posts, but the entire ANI-L community experienced a loss of trust in the security of our online home.
In many ways our participation in this conference was a horribly unpleasant ordeal. There was no question of our ever agreeing to work with that organization and its conferences again! And yet–the time we got to spend with each other was precious, as always. The presentations in the ANI strand were stimulating, meaningful, and valuable to many people. Our panel presentation on autistic self-understanding drew a standing-room-only crowd. It was one of the most powerful autistic presentations I’ve ever seen–and so many people came and saw it! People took it seriously and let it touch them. Half the audience–and also half the panel–was in tears by the time it was over. The panelists talked about many things that we really wanted parents to understand; and there the parents were, willing and eager to let us teach them. We could be so much more than self-narrating zoo exhibits.
We’ve come a long way
There was one very significant difference between our online community’s reaction to the problems with the conference organizers, and the reaction to the online Snore Wars at the time ANI-L was founded less than two years earlier. The Snore Wars–bitter conflict between autistic people and non-autistic parents and professionals occurring in an NT-dominated forum–had a polarizing effect within ANI. A significant number of the autistic people involved reacted with resentment and distrust toward non-autistic people in general. They argued that the new ANI-L forum would not feel safe to them if NT parents and professionals were allowed to join. This became a source of conflict between autistic people who wanted an autistic-only forum, and those who wanted a more inclusive one. We worked together to respond to those concerns by developing the detailed ANI-L forum rules, thus managing to keep our community from being torn apart by the conflict.
In the negative fallout from the 1995 conference, there was once again bitter conflict and mutual resentment between some autistic people and cousins (ANI members who felt we had been treated badly by the conference organizers) and some non-autistic parents and professionals (conference organizers who were offended by our demands to be respected as equals). But this conflict did not result in an anti-NT backlash among ANI members–most likely because by this time, a number of NT parents and professionals were accepted members of ANI-L. Our NT members supported us, commiserated with us on ANI-L, wrote letters in our support to the conference organizers, tried to comfort the person who received the abusive phone call, and expressed their own feelings of dismay and betrayal at the violation of forum confidentiality. Sometime during our first year online, our NT members had stopped being “guests” and had become part of our community.
There was also a very significant parallel between our response to the Snore Wars and our response to the conference conflict. The Snore Wars occurred because our community had discovered and embraced online mailing lists as a vehicle for making connections, but our ways of connecting were not accepted by the NT-dominated online forum where we were trying to do it. So we created an AC-dominated online forum, giving ourselves our own place to connect in our own ways. The conflicts surrounding the conference occurred because our community was discovering and embracing the possibilities of being active participants in autism conferences, of adapting conference environments and procedures to suit our own needs, of producing conference presentations that addressed our own interests–but our initiatives were not accepted by the organizers of the NT-dominated conference where we tried to advance them. And so we decided that the time had come to create our own autistic conference.
AUTREAT: COMMUNITY IN PHYSICAL SPACE
Finding a space
The idea of “autistic space” remained a guiding theme as we prepared for this new step in autistic community development. We searched for a place that we could have to ourselves, without being surrounded by distracting NT activity. We wanted autistic children to be able to come and meet autistic adults. We liked the idea of complete immersion: having conference activities, meals, and lodging all in the same venue, rather than having to move back and forth every day between our autistic space and the NT world. In the course of our discussions, some members pointed out the importance of having not just a building, but also outdoor space where people could move around. It had to be considerably less expensive than a traditional hotel venue. The concept of an autistic retreat began to take shape: Autreat.
After much searching, we found a children’s summer camp that was available for rentals after the end of the summer season. It was in a rural area, several miles from the nearest city. There were hiking trails and woods, a pond, and a pool for swimming. Staff from the camp provided child care.
The first Autreat took place in late August, 1996, beginning on a Sunday afternoon and lasting two days. About fifty people attended: autistic adults (some on their own, some with family members or caregivers), autistic children with their families, parents of autistic people of all ages, and a professional or two. We met at that same camp every year through 2000. There was no Autreat in 2001 (due to organizational difficulties in the transition from one or two people doing all the work to having a functioning Autreat planning committee). In 2002 and 2003 we met at a different camp, still with features similar to the first camp (rural, rustic, self-contained), but with better physical accessibility for people with mobility impairments. In 2004 we moved again, this time to a university campus that still provides a degree of seclusion from the outside world, and has outdoor space for roaming, but has more comfortable indoor spaces (including residence hall rooms shared by two to four people, instead of cabins for six or more people) and better food service. In response to people’s requests for Autreat to be longer, we added a third day in 1997 and are planning to add a fourth day in 2005.
People who attend
While the majority of Autreat attendees live in the United States or Canada, people have also come to Autreat (some of them year after year) from countries including Australia, Finland, Israel, Japan, New Zealand, Norway, and others. Most Autreat attendees are verbal, though a significant number do not use speech. Wally Wojtowicz Sr., the father of a non-speaking autistic adult, said of the first Autreat in 1996:
Here people who could paint and draw equally shared experiences with those who can’t hold a pencil or a brush. People who are very articulate equally shared experiences and understood those who could only jump or clap their hands or point to letters on a letter board or picture board to respond to a question. (Personal communication)
The first year, other than a workshop introducing concepts of self-advocacy to non-autistic parents (Johnston & Sinclair, 1996), all sessions were presented by non-autistic people. I think this decision was an instance of backlash against the “self-narrating zoo exhibit” phenomenon–the pervasive use of autistic people at conferences as resources to be used for the benefit of parents, and as sources of raw data the meaning of which was to be determined by NTs. (“Give us the facts, we will take care of the philosophy.”) This time, at our conference, we invited non-autistic presenters to provide information for the benefit of autistic people. At subsequent Autreats 50% or more of the presenters have been autistic people. Topics have included disability politics, practical issues in autistic people’s lives, and social/interpersonal issues. The Autreat call for proposals (http://ani.autistics.us/aut05cfp.html) details differences between the kinds of presentations that are accepted at Autreat and the kinds of presentations that are offered at typical parent- and professional-oriented autism conferences:
- Autistic people are the primary audience at Autreat. We expect presenters to be speaking to us, not to speaking to non-autistic people about us.
- We are interested in workshops about positive ways of living with autism, about functioning as autistic people in a neurotypical world, and about the disability movement and its significance for autistic people. We are not interested in workshops about how to cure, prevent, or overcome autism. We do not appreciate having non-autistic people come into our space to talk to each other about how difficult we are to deal with, or how heroic they are for putting up with us.
- We are not interested in “self-narrating zoo exhibit” presentations. Presentations about the presenters’ personal stories are not considered, unless the presenter is able to use his or her story in a way that will help other people share and understand their own experiences in a new way.
Social rules and norms
Every year since its beginning, Autreat has been attended by some people who have been together in person before, some who are acquainted via online contact but have never met in person, and some who have had no prior contact with ANI. Each year we hold an orientation session on the first afternoon, to introduce newcomers to the social features of Autreat; and a written summary of the orientation information is included in the Autreat program book. Orientation information addresses use of the interaction signal badges; other badges to signal that a person does not want to be photographed; accommodating sensory sensitivities (perfume and scented personal care products are not allowed; flash photography is allowed only with permission of everyone who is close enough to be affected by the flash); prosopagnosia (name badges are worn throughout Autreat to help people recognize each other); and acceptable behavior:
We do not expect you to “act normal” or to behave like a neurotypical person at Autreat. It is perfectly acceptable at Autreat to rock, stim, echo, perseverate, and engage in other “autistic” behaviors. The only behaviors that are not acceptable are actions that infringe on the rights of others: by violating their personal boundaries or their property boundaries, or by preventing them from participating in Autreat activities, or by causing undue distress through physical, verbal, or sensory assault. (Autreat orientation materials)
Also included in the live orientation session is information about options in the use of the Autreat space: location of the crash room; warnings about sensory hazards of the space (at both camp venues we had to endure tests of the fire alarm system, so we told people when that would happen and suggested places to go to be as far as possible from the alarm when it went off; in the university residence hall the room doors will slam loudly if not handled carefully, and the halls carry a lot of sound and echoes, so we ask people to be careful with the doors and to be quiet in the halls); options for people who do not want to eat in the dining hall (people may take their meal trays and eat somewhere else, provided they return all trays and utensils to the dining hall).
A basic principle of Autreat social conventions is that social interactions are only desirable if they are voluntary:
For some ANI members, meeting other autistic people and having a chance to socialize with others like ourselves is an exciting and wonderful experience. Others are not interested in social contacts and may come to this event just for the workshops. Some of us are interested in socializing some, but need to be able to take time out from interacting. Autreat is meant to provide opportunity, but not pressure, for social interactions. (ANI web site, www.ani.ac/autreat.html)
“Opportunity but not pressure” is a core principle for all Autreat activities: attendance at presentations, informal discussions that are held in the evenings, swimming and other recreational activities, socializing, meals (people who prefer to make their own meal arrangements are able to register for Autreat without paying for Autreat meals), on-site lodging (people who prefer to stay at an off-site hotel can register for Autreat at a commuter rate)—all participation is purely voluntary.
Freedom from pressures and expectations
For some autistic people attending Autreat, the sudden absence of pressures and expectations to behave in certain ways can be quite disorienting at first. NT people are often disoriented as well, and may experience culture shock. One NT attendee described feeling unsure of how to behave and how to relate to people, confused about how to interpret other people’s behavior, and anxious that he might offend people without realizing it (personal communication). In other words, he was able to experience at Autreat some of the same social confusion and discomfort that autistic people frequently experience in NT society. While this can be somewhat disturbing, a number of NT people have reported that it was a valuable experience that helped them to better understand what autistic people go through on a daily basis.
Many (but, again, not all) autistic people have felt the same sense of homecoming at Autreat that characterized the early meetings of ANI members in small groups. At the first Autreat in 1996, JohnAlexis Viereck stated, “I feel as if I’m home, among my own people, for the first time. I never knew what this was until now” (personal communication). This sentiment is so widespread among regular Autreat attendees that it was addressed in an Autreat workshop comparing the autism community to a diaspora (Schwarz, 1999).
The absence of any expectation or pressure to socialize, and the knowledge that they’re free to withdraw at any time, seem to free many autistic people to want to socialize. People spontaneously get together for hikes or tours of local sites of interest. Sleep deprivation is a common experience at Autreat, as conversations and informal discussion groups go on late into the night. One morning I watched with interest as people came into the dining hall for breakfast. The dining hall was furnished with small tables, about six or eight chairs per table, and was large enough to seat about 200 people. Our group was small, and some people were eating outside to avoid the noise and crowding in the dining hall. There were plenty of empty tables. But at least half the people in the room were clustered around just a few of the tables. As I watched, more and more people brought their trays to tables that already had people sitting at them. As the tables filled up, some people took chairs from unoccupied tables and brought them to squeeze around one of the full ones. In similar settings in NT society, autistic people would be more likely to avoid the occupied tables and to seek out the empty ones.
DECOMPRESSION AND RE-ENTRY
Some of the same phenomena that had occurred in small gatherings of autistic people, and on ANI-L, have also been observed at Autreat. While none of these experiences is universal for all autistic people, these are some of the things that do occur with some frequency in the ANI community:
- Many autistic people need to know ahead of time what they will encounter and what will be expected of them. It’s important to have an opportunity for people to ask questions. I have had extensive email correspondences with online friends about what it would be like to visit my house. People planning to attend Autreat often have a lot of questions about anything from general social conditions to minutiae about the physical space. The detailed rules for ANI-L, and the Autreat orientation information, grew out of both a desire to avoid reoccurrence of past negative experiences, and out of the common need for autistic people to have clear structure in order to feel comfortable. Most early ANI members had this need for structure and for clear explanations of boundaries and expectations. As ANI has grown, we have been joined by more people who have different responses to rules, including some people who resent the concept of having any rules at all. Balancing the needs of different autistic people remains an ongoing challenge.
- While many autistic people do have an immediate positive reaction to being in autistic space, occasionally (at Autreat, approximately one person every year or two) someone finds the sudden absence of NT social expectations so disorienting that it results in a kind of “explosive decompression.” Usually people who have this reaction are people who have been particularly strongly indoctrinated into passing for NT, to the extent that when the NT social pressures are gone, and they don’t have to wear their “NT masks” anymore, they no longer know what to do or even who they are. They may feel panicked, or simply frozen into paralysis. The good news is that when this sort of strong disorientation occurs, it is temporary and is usually a prelude to a personal “blossoming” as the person reconnects with his or her suppressed self, and forms a strong attachment to autistic community.
- Sometimes as autistic people begin to understand autism as their natural way of being, they become angry about the things that have been done to them by people trying make them more ”normal,” or they experience grief reactions over the things they’ve lost through not being allowed to develop self-understanding and self-acceptance earlier.
- In rejecting intolerant NT prejudices that define NT characteristics as “good” and autistic characteristics as “bad,” some autistic people react with anti-NT prejudice and start defining all autistic characteristics and autistic people as “good,” and all NT characteristics and people as “bad.” Fortunately, “NT bashing” on ANI-L or at Autreat is generally met with prompt rebuttals and calls for tolerance by other autistic people.
- Autistic immersion experiences, both at Autreat and in smaller gatherings of friends, are often followed by some degree of sadness, disorientation, and even depression upon returning to the NT world. One person reported suffering from significant post-Autreat depression every year for the first several years she attended Autreat. Eventually she said the depression stopped:
I think that the depression may be caused by the abrupt effect of saying goodbye, and having to go back to “The World” and thus abandon the AC part of the self. The realization that there would be more meetings helps to carry the AC essence inside, even when the other ACs are far away. (Sola Shelly, personal communication)
Some Autreat attendees have eased the separation by arranging to spend a day or two after Autreat with one or more autistic friend(s), sometimes sightseeing together and thereby re-entering the NT world in autistic company.
In the last thirteen years, Autism Network International has grown from a small group of penpals meeting for the first time in a small apartment, to an international community of autistic people who meet online, in small informal meetings in private homes, and in our own communal space at Autreat. We have certain shared values in affirming the validity of our way of being. We have many common experiences both with the experience of autism itself, and with being autistic in a world of neurotypicals. We have a history of significant events experienced by our community. We have a dynamic, constantly-evolving set of customs and rules growing out of our shared experiences and our common needs. We have certain terms, expressions, and in-jokes that are distinct to our community. We have children whose parents are helping them grow up knowing that it’s okay to be autistic, knowing other autistic children and autistic adults, knowing that they’re part of this community. The children who attended the first Autreat are teenagers now; the children whose parents were among the early members of ANI-L are now young adults. It will be interesting to see what this first generation of ANI children will bring to our community, and to the world, as they come into their own.
The American Heritage(r) Dictionary of the English Language, Fourth Edition
(2000) Houghton Mifflin Company.
Christiansen, J. B., & Barnartt, S. N. (1995) Deaf President Now!: The 1988 Revolution at Gallaudet University. Washington, DC: Gallaudet University Press.
Cousins, S. (1993) Neural connections in Toronto. Our Voice, the newsletter of Autism Network International, 1 (3).
Douglass, F. (1855) My Bondage and My Freedom. In Library of America College Editions (1994) Douglass Autobiographies. New York: Penguin Books.
Dybwad, G. & Bersani, H. (1996) New Voices: Self-Advocacy By Persons With Disabilities. Cambridge, MA: Brookline Books.
French K. (1993) My personal holiday. Our Voice, the newsletter of Autism Network International, 1,(3).
Johnston, J. & Sinclair, J. (1996) Orientation to self-advocacy for parents and professionals. Presentation at Autreat, Canandaigua, New York.
Kennedy, M. J. (with Shoultz, B.). (1996, April). Thoughts about self-advocacy. TASH Newsletter, 22_(4), 27-28. Online at http://soeweb.syr.edu/thechp/thoughts.htm
Kugelmass, J.A. (1951) Louis Braille: Windows for the Blind. New York: Julian Messner, Inc.
Lane, H. (1992) The Mask of Benevolence: Disabling the Deaf Community. New York: Alfred A. Knopf.
Putnam, P. (1979) Love in the Lead: The Fifty-Year Miracle of the Seeing Eye Dog. New York: E. P. Durron & Co.
Schwarz, P. (1999) The autism community as a neurological diaspora: Some cultural parallels and some practical responses. Presentation at Autreat, Canandaigua, New York.
Shapiro, J. (1993) No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: Times Books
Shelly, S. (2003) Cousinhood: Who cares and other questions. Presentation at Autreat, Brantingham, New York.
Sinclair, J. (1988) Some thoughts about empathy. www.jimsinclair.org/empathy.htm
Sinclair, J. (1992) Social uses of fixations. Our Voice, the newsletter of Autism Network International, 1,(1).
Sinclair J. (1993) Don’t mourn for us. Our Voice, the newsletter of Autism Network International, 1(3). Online at www.jimsinclair.org/dontmourn.htm
Sinclair, J. (1996) Parent-professional partnerships: Who’s missing in this picture? Presentation at Autism Treatment Services of Canada, Victoria, British Columbia, Canada.
Van Cleve. J.V. & Crouch, B. A. (1989) A Place of Their Own: Creating the Deaf Community in America. Washington, DC: Gallaudet Univesity Press.
Williams, D. (1994) Somebody Somewhere. New York: Random House.
Williams, P. & Shoultz, B. (1982) We Can Speak for Ourselves: Self-Advocacy by Mentally Handicapped People. Bloomington, IN: Indiana University Press.