be born with dark hair of the selchie, and they be good fisherfolk.

There are more stories, stories told by Hugh and Tess.    Hugh tells of another dark-haired ancestor, this one three generations back, saved in a shipwreck, or so he said, by the seals.   Later on, in answer to one of the many questions Fiona asks about her family, Tess tells how her mother met her father.   "She grew to love the island, our Brigid. They were the last to be married on the island. And she, the last to be buried on it. He always blamed himself for bringing her into the life of the sea."

There is a wistfulness in Hugh and Tess, for the island they have left behind, but a finality about not returning there: the loss of Jamie, and one might presume, of Brigid, still too painful.

Eamon takes (current-day) Fiona to the island for a second visit - and from a hilltop she sees a little naked boy down by the shore who sees her and jumps into a tiny cradle-like boat and paddles off!   Subsequent sightings end the same way.

A later exchange between Fiona and Tadgh: she asks him "Why must he (Jamie) always run from me?" Tadgh replies "Why do you chase him?"   Fiona: "He's lost out there." Tadgh: "He's just with another branch of the family." Fiona: "I don't know whether to believe you. Have you seen him?" And Tadgh replies: "I may be daft, but I'm not blind."

Fiona becomes determined to reclaim Jamie by getting her grandparents and Eamon to move with her back to the island.   Initially they scoff at the idea - "I'll bet the houses are dirty", says Tess.   But also: "I couldn't think about it. I keep seeing your brother, floating away", to which Hugh chimes in: "Only real tragedy is the young ones who die before their time."

But Eamon - who at one point says "I'm moving back. I'll have a wife" - is game for helping Fiona turn them around.   Together, they fix up the cottages on the island.

And when Hugh and Tess learn that their landlord wants to evict them to rent their home for lucrative rent to summer tourists, Fiona and Eamon get more of a chance to convince them.   Something has been working to soften their resistance... because when Hugh looks at the weather and says there is a nasty storm coming, and Fiona blurts out "Hope Jamie comes in, out of the storm... I saw him, Grandmother. I'm not imagining it. It's the seals been looking after him", Tess tells Hugh to gather supplies for all of them to go out to the island.   And on the island, they find the cottages Fiona and Eamon have restored.   And then there is a climactic reunion as the seals gather to back Jamie away from his cradle-boat and into the arms of his (own branch of the ;-)) family.

Yes, it's a fairy-tale.   But it is told matter-of-factly, with no extraordinary magic, and with the stories of Fiona's family and ancestors as a backdrop.   The suspension of disbelief is not hard at all to accomplish.

The film's story is actually a point of confluence between two genres of folk story that seem to have served through the ages as explanations for the existence and behavior of children we nowadays would suspect are autistic: changeling lore, and feral-child stories. 31

The feral-child angle is simple: Jamie has been raised by the seals on the island.

The changeling angle is a bit more convoluted.   The usual premise of changeling stories that served as explanations for autism is that a human child is stolen away from its parents by the fairies, and a fairy child that is unresponsive and "inhuman" in characterization is substituted in the human child's place.

In the Selchie stories, this is reversed: the human man gains power over the Selchie and steals her away from her seal family and home in the sea.   But the Selchie tale woven into Roan Inish has additional chapters - Nuala the Selchie has children with her human captor Liam Coneelly, and Selchie blood travels down the generations of the Coneelly family.   And finally the seals bear the infant Jamie away - dark-haired Jamie, with the Selchie blood in him - as the humans are about to leave the island for good (or so they intend).   And they only return him when the humans come back to stay.

With the film's descriptions of the "dark-haired ones" as different - especially Tadgh, whom we meet - it struck me that it would be interesting to see what would resonate if one posited "Selchie blood" as a metaphor for the genetics of autism.   Autism tends to run in families, and along with the cases that come under clinical purview in each family, there are generally other family members with some scattering of autistic traits - a little like the "dark ones" among the Coneellys.   The "dark ones" are a diverse lot, but stand out in one way or another, and share characteristics in common.   Some are brilliant.   Some are "daft, but not blind", as Tadgh says of himself.   Some are wild and given up for lost, like Jamie.

The language that many families use in regard to their autistic children is indeed of having "lost" them, and - these days - wanting to do anything to "get them back".

In past decades, so many families were told there was no hope for their autistic child;   even after the era of Bruno Bettelheim and blaming (and "therapeutically intervening" with) "refrigerator mothers" started to recede, families continued to be advised to institutionalize their autistic children, to forget about them and go on and have another child.   A bit like Hugh and Tess putting the island behind them and resigning themselves to the conclusion that Jamie is gone.

Fiona challenges this by discovering evidence that Jamie is not gone - that he's never in fact left.   But he is elusive and flees anyone and anything that might be threatening, that might disrupt the life he is living and thrust him into the unknown.   She makes the critical leap of reasoning that he can't be yanked out of his world into the family's world: the family is going to have to move into his world.   But the irony here is that his world is theirs - just a part of it that they have abandoned.

So the family reunites with him by moving back onto the island - into his world, that erstwhile abandoned part of their own world in and through which they reconnect with their own roots and traditional way of living, which will now pass on to the next generation.

They learned to recognize and work with the forces that kept Jamie on the island, rather than against them.

Would that we similarly gain more of an ability to recognize how we can work with our kids' autism - recognize those aspects of it which might lead us to motivators and alternative ways of learning and doing.

Sometimes that might involve returning to places we've left behind ourselves in the name of "growth" and "progress".   Sometimes it might involve examining whether society is right to devalue all of the things it devalues about autistic ways of being, and deciding that it's wrong.   Would that we find a way to get the traits of autism that are not intrinsically debilitating destigmatized, so that the fair-haired Coneellys among us can allow themselves to live on the island comfortably and confidently along with the "dark ones" - comfortable in their own skins, and comfortable fully embracing a lineage and family history that includes that which makes the "dark ones" who they are.   As Fiona did. 32

Roan Inish was a homecoming of sorts for the film series: the idea of doing the film series originally came several years ago from a prior experience with this very film.   At Autreat 1999, an autistic woman from Canada named Kim Duff led a workshop on changeling lore.   I had serendipitously packed Roan Inish to watch with the kids on the trip to and from Autreat, and because it seemed to fit in so well after Kim's workshop, I suggested that a bunch of us get together that evening to watch the film.   We did, and interesting conversation ensued about the film as, among other things, a metaphor for constructive family responses to autism.   And that was the germination of the idea that led to the film series.

Epilogue: Ideas for Next Season and Beyond

Jamie (Freed, of AANE, not Coneelly of Roan Inish :-)) and I have begun to put together the set of films we want to screen this coming year, or beyond that in the future.   We solicited suggestions from our audience; some of the ideas that follow come from the responses we got to that solicitation.   Our thoughts so far include:

•  The Australian film Malcolm , directed by Nadia Tass, screenplay by David Parker, about an AS man with a knack for creating practical inventions, who loses his job and must take in boarders.   The boarders he takes in are a pair of criminal types - and they lead him into helping them pull off a bank robbery.   This film was recommended to me by two people coming from quite different places and perspectives, which has me intrigued: one is a psychologist on the AANE board (Barbara Rosenn, Dan Rosenn's wife), and the other is Jane Meyerding, a wonderful writer and activist within the autistic self-advocacy movement, some of whose work is referenced in the footnotes of this paper. 33

•  I Am Sam , directed by Jessie Nelson, screenplay by Kristine Johnson and Jessie Nelson.   Nelson's director's commentary is an interesting transition point on the journey to greater constructive awareness and comfort with diversity that includes folks who are socially and in some cases cognitively disabled.   There is increasing awareness and engagement yet still some receding vestiges of stereotyping and patronization.

•  Some set of accessible films by and/or about Andy Warhol; I'd love to get Val Paradiz to help select/arrange, and perhaps to come introduce and participate in the discussion.

•  A Beautiful Mind , directed by Ron Howard, screenplay by Akiva Goldsman, based on Sylvia Nasar's biography by the same name of the mathematician John Nash.   Nash was diagnosed with schizophrenia, not autism, but there are parallels worth exploring and there is a historical intertwining: of autistic people having been misdiagnosed schizophrenic, 34 and of autism long ago having been considered "childhood schizophrenia".   It is also interesting how much of a departure from biography Goldsman's screenplay represents: he says that his goal was to convey how people with schizophrenia experience delusions. 35  Goldsman said that he "threw biography out the window": that "John Nash doesn't remember his delusions", so Goldsman had to build his own "construct of delusions" in order to illustrate the experience of having them.

•  American Splendor, direction and screenplay by Shari Springer Berman and Robert Pulcini.

We're looking forward to another year of interesting viewing and discussion, and we hope to stimulate more minds and open more eyes in the process.

Appendix: On Person-First Language and "Autistic" vs. "AS"

"Person-first" language - "person with autism", rather than "autistic person" - is favored by other disability groups (and apparently by the arbiters of the politically correct).   But it is not favored, and not used, by the majority of autistic self-advocates.

For one thing, autism is nothing to be ashamed of; "people first" language implicitly connotes devaluation of the condition the individual is "with".  It is just another running away from dealing with underlying attitudes on the part of the majority - the attitudes truly in need of correction - by throwing up euphemistic language as a diversion.

For another thing, autism is pervasive .   It is not just a collection of deficits; it informs   personality, temperament, processing of emotions, sensory preferences, aesthetic sensibilities, and cognitive style.   It is not something we have that somehow can be removed, resulting in a "normal", non-autistic person.   It is as much a determinant of identity as gender, race, ethnicity, religion, or sexual orientation.   So "person-first" language simply makes no sense with respect to autism.   It makes no more sense to refer to an autistic person as a "person with autism" than it does to refer to a man as a "person with masculinity" or a Catholic as a "person with Catholicism".

See also [Sinclair 1999], the "note on terminology" in [Sainsbury 2000] (p. 11), and the glossary entry for "autistic" (verb and noun) in [Miller 2003].

That said, there is a question that arises regarding AS (Asperger Syndrome).   The reasoning above about "autistic" applies just the same to AS.   The problem is, there isn't a good adjectival form to go along with the noun form "Asperger Syndrome".   I have decided in this paper to employ the acronym "AS" as an adjective.   Shaky ground, syntactically, I know, but there isn't really an alternative, and I will not agree to being forced to adopt "person with" terminology that is just plain wrong for the reasons delineated above, on the basis of syntactic purism. 36

What I would really like to be able to do is simply not to use the term AS, or Asperger Syndrome, at all, unless a distinction between AS and the rest of the spectrum is specifically germane to the matter at hand.   Then I could simply refer to myself and everybody else on the spectrum as an "autistic person" and be done with it.   In fact, that happens a great deal in the UK and Australia.   But for some reason, here in the US and apparently as well in Canada, too many people have a terrible cognitive-dissonance hangup about calling someone so "high-functioning" or "mildly affected" as to be diagnosed AS, "autistic".   Non-autistic people who claim to be acting in the interests of so-called "low functioning" autistics scream at AS folks who refer to themselves as "autistic" that they are not really autistic , that real autism is so-called "low-functioning" autism.   Other, less rabidly turf-protective people shake their heads and say "but why call yourself autistic when you don't have to?" - implying that autism is, in the final analysis, something to be ashamed of.   It's symptomatic of a persistent, pernicious devaluation of autism itself, that every one of us who is in disagreement with ought to be doing all they 37 can to counteract it.

Simply stated, one of my goals as an autistic self-advocate, is to work for the day when all people on the spectrum can be called "autistic", and no devaluation occurs or is implied.

Appendix: Theory of Mind Issues - Not a Level Playing Field

One of the major theories about autism that arose in the 1990s was the theory of mind hypothesis - the idea that one of the central deficits in autism, if not the central deficit, was in so-called "theory of mind" skills.

This is the ability to represent in one's own mind, aspects of the state of another person's mind.   Basic theory of mind involves representing facts that it is possible to deduce that another person knows, or does not know.   Non-autistic children begin naturally to develop this basic theory of mind skill at about age 4.

There is a classic experiment that tests this, often referred to as the "Sally-Anne" test, because the question involved is formulated in terms of a story about two girls named Sally and Anne.   Anne puts a basket and a box in front of Sally, both of which are opaque and have covers.   Inside the basket, Anne puts a seashell, and then she closes the covers of both the basket and the box.   She sends Sally out of the room.   While Sally is out of the room, Anne moves the shell from the basket to the box, and closes the covers of both again.   The question is: when Sally returns, where will she look for the shell, if asked?

Non-autistic people over the age of about 4 will respond that Sally will look for the shell in the basket - because they have deduced that that is the last place Sally saw the shell being put.   Non-autistic children under the age of about 4, and most autistic children for some number of years older than that, will respond that Sally will look for the shell in the box - because that's where the shell really is, as far as they know, and they aren't constructing a representation of what Sally might know in their own minds.

The original formulation of the theory of mind hypothesis about autism was that deficits in this basic level of theory of mind were permanent.   But in the time since, it has become clear that most autistic people will eventually, one way or another, develop the ability to make such representations of what other people can be deductively assumed to know, or not know.

There are higher-order levels of theory of mind skill as well - the ability to infer what sort of reaction or emotion another person is likely to have in a given situation.   This requires a much richer representation of the other person's internal state and past experiences.   Many autistic people are said to take quite a bit longer to develop this kind of skill, or perhaps are said never to develop it well at all.

But I don't think that's correct.   I think that much of the mainstream population is relatively lousy at that skill, not just autistic people.   What lets them succeed at tests of that skill is that they are in a vast majority that is likely to have roughly the same sorts of reactions and emotions in everyday situations.   If they guess that others will react the way they do, the odds are overwhelmingly in favor of their getting it right.   Now contrast that with autistic people, many of whom do not have (close enough to) the same sorts of reactions and emotions in everyday situations.   In order for them to get test questions of this skill right, they're going to have to be adept at predicting how a population dissimilar to themselves is going to react or emote.   That is a much harder thing to do than to guess that others will react or emote the same way one does oneself.

So higher-order theory of mind assessment, at least the way it appears to be generally done, is not a level playing field.

And this explains why I carefully chose phrasing like "reasoning about the social behavior of dissimilar others" when discussing Alan Turing and the predicaments he faced.   Succeeding at that task, when the emotional calculus of the "dissimilar others" is really quite alien to one's own, requires a level of social adeptness that we normally expect to find in salesmen, politicians, trial lawyers, con artists, and so on - people who make it their business to succeed at getting into heads significantly different from their own.

And of course, Turing was in a different line of business.   And definitely in a minority, from which vantage point the reactions and emotions of the majority are, in fact, quite alien.

This characterization of the majority, if you are part of it, may engender some degree of discomfort.   I am trying to come up with an accurate yet sound-bite-capable name for the sensibility that is being violated, which in turn produces the discomfort.   The best I have been able to do so far is probably OK for use in academic contexts, but would probably not work very well on the 6:00 news: "hegemony of the majority".   It's the sense that a large majority has - and that many members of that large majority get very psychologically uncomfortable when stripped of   - that its values, experience, or way of being is normative.

A step beyond that - a notion on the part of a vast (particularly a vast powerful ) majority that its values, experience, or way of being is not only normative but universal , particularly when minorities exist that disprove that notion - is the root and recipe for all kinds of oppression of minorities.   And it is very easy for that sort of thing to happen to invisible or nearly invisible minorities.

But even just the notion of normativeness , and discomfort at apparently being stripped of it and the psychological protection-in-numbers that it confers, is significant here.

A frequent term used in the autistic community for non-autistic people is "neurologically typical", or NT.   Some NTs get quite uncomfortable at being called "NT" rather than "normal".   I think this psychological need around "hegemony of the majority" is the reason why.

One would of necessity lose that need pretty quickly, in order to survive and function, if one became part of a non-normative minority.   Some of us live that way from day one.  

Part of the aim of the film series is to get people to think and ask questions that lead them towards living that way constructively and in robust psychological health about it.

References and Further Reading

[Antonetta 2005] Antonetta, Susanne.   A Mind Apart .   New York: Tarcher/Penguin (forthcoming)

[Autism99 1999] Autism99.   "What Is Autism?" from proceedings of the Autism99 online conference.   http://trainland.tripod.com/aut99whatis.htm

[Brottman 2005] Brottman, Mikita.   "Nutty Professors".   In the Chronicle Review, Chronicle of Higher Education , September 16, 2005.   http://www.chronicle.com/free/v52/i04/04b00701.htm

[Canku Ota 2000] Canku Ota.   "Sherman Alexie".   In Canku Ota, A Newsletter Celebrating Native America , Issue 12, June 17, 2000.   http://www.turtletrack.org/Issues00/Co06172000/CO_06172000_Alexie.htm

[Dekker 1999] Dekker, Martijn.   "On Our Own Terms: Emerging Autistic Culture" from proceedings of the Autism99 online conference.   http://trainland.tripod.com/martijn.htm

[Faherty 2002] Faherty, Catherine.   "Asperger's Syndrome in Women: A Different Set of Challenges?"   Autism Asperger's Digest , July-August 2002.   http://www.autismtoday.com/articles/Aspergers_in_Women.htm

[Fournier 2002] Fournier, Barbara.   "Inside the mind of an Oscar Wilde of computer science".   Polyrama 116, November 17, 2003.   http://www.teuscher.ch/christof/documents/polyrama_e.pdf

[Frith 1992/2003] Frith, Uta.   Autism: Explaining the Enigma .   Second Edition.   Oxford: Blackwell Publishers.

[GTTO 2005] "Getting The Truth Out". http://www.gettingthetruthout.org

[Harjo 2005] Harjo, Suzan Shown. "My New Year's resolution: No more fat 'Indian' food".   In Indian Country Today, January 20, 2005. http://www.indiancountry.com/content.cfm?id=1096410209

[Hodges 1995] Hodges, Andrew.   Alan Turing website.   http://www.turing.org.uk

[Hodges 1995a] Hodges, Andrew.   "Alan Turing at VE Day".   London Sunday Times , May 7, 1995.   http://www.turing.org.uk/publications/stimes.html

[Hodges 2004] Hodges, Andrew.   "Alan Turing - An Enigma After Fifty Years".   Gay and Lesbian Humanist , Summer 2004.   http://www.galha.org/glh/234/turing1.html

[Klein 2001/2005] Klein, Frank.   Autistic Advocacy website.   http://home.att.net/~ascaris1

[Leask 2005] Leask J, Leask A, Silove N.   "Evidence for autism in folklore?"   Arch Dis Child. 2005;90(3):271

[Ledgin 1998/2000] Ledgin, Norm.   Diagnosing Jefferson .   Arlington, TX: Future Horizons.

[Ledgin 2002] Ledgin, Norm.   Asperger's and Self-Esteem .   Arlington, TX: Future Horizons.

[Levine 2002] Levine, Bettijane.   "A Beautiful Journey to Professional Nirvana".   Los Angeles Times , March 10, 2002.   http://www.hws.edu/news/update/showwebclip.asp?webclipid=353

[Meyerding 1998/2002] Meyerding, Jane.   "Thoughts On Finding Myself Differently Brained".   http://mjane.zolaweb.com/diff.html

[Meyerding 1998/2005] Meyerding, Jane.   Website.   http://mjane.zolaweb.com

[Miller 2003] Miller, Jean Kearns, ed. Women From Another Planet?   Bloomington, IN: 1stBooks Library.

[Montgomery 2005] Montgomery, Cal.   "Defining Autistic Lives", in Ragged Edge Online , June 30, 2005.   http://www.raggededgemagazine.com/reviews/ckmontrubin0605.html

[Murray 2005] Murray, Dinah, ed.   Coming Out Asperger: Diagnosis, Disclosure and Self-Confidence .   London: Jessica Kingsley Publishers (forthcoming)

[Paradiz 2000] Paradiz, Valerie.   "Outing Andy Warhol".   In Disclosure and Asperger's Syndrome: Our Own Stories , proceedings of the Asperger's Association of New England Conference on Disclosure, March 2000.

[Paradiz 2002/2005] Paradiz, Valerie.   Elijah's Cup .   Revised Edition: London: Jessica Kingsley Publishers, 2005.   (Original Edition: New York: Simon and Schuster Free Press, 2002.)

[Pollard 2005] Pollard, Jonathan deBoyne.   ""xe", "xem", and "xyr" are sex-neutral pronouns and adjectives".   http://homepages.tesco.net/~J.deBoynePollard/FGA/sex-neutral-pronouns.html

[Prince-Hughes 2002] Prince-Hughes, Dawn, ed. Aquamarine Blue 5 .   Athens, OH: Swallow Press / Ohio University Press.

[Prince-Hughes 2003] Prince-Hughes, Dawn.   "Understanding College Students With Autism".   In Chronicle of Higher Education , January 3, 2003.   http://www.ohiou.edu/oupress/aquarticle2.htm

[Purcell 2005] Purcell, Catriona.   "Fairytales Tell of Autistic Children".   In News in Science , ABC Online, February 25, 2005, Australian Broadcasting Commission.   http://www.abc.net.au/science/news/stories/s1309455.htm

[Rubin 1995] Rubin, Sue.   "Killing Autism Is A Constant Battle".   In Facilitated Communication Digest , Vol.4 No. 1, November, 1995.   http://soeweb.syr.edu/thefci/4-1rub2.htm

[Rubin 2005] Rubin, Sue.   "Acceptance versus cure". CNN Presents. http://www.cnn.com/CNN/Programs/presents/shows/autism.world/notebooks/sue/notebook.html

[Sainsbury 2000] Sainsbury, Clare. Martian in the Playground .   Bristol, UK: Lucky Duck Publishing Ltd.

[Schwarz 1996] Schwarz, Phil.   Personal account of being a university student with HFA/AS.   On University Students With Autism And Asperger's Syndrome (autuniv-l) website.   http://www.users.dircon.co.uk/~cns/phil.html

[Schwarz 2004] Schwarz, Phil.   "Identifying, Educating, and Empowering Allies".   Proceedings of Autreat 2004, Philadelphia PA, June 28 - July 1, 2004.   http://www.autistics.org/library/allies.html

[Seidel 2005] Seidel, Kathleen.   "Autopsy of a Violent Diagnosis".   In neurodiversity.com weblog, October 1, 2005.   http://neurodiversity.com/weblog/article/53/autopsy-of-a-violent-diagnosis

[Shore 2004] Schwarz, Phil.   "Building Alliances: Community Identity and the Role of Allies in Autistic Self-Advocacy".   In Shore, Stephen, ed. Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum .   Shawnee Mission, KS: Autism Asperger Publishing Co.

[Sinclair 1999] Sinclair, Jim.   "Why I dislike 'person first' language".   http://web.syr.edu/~jisincla/person_first.htm

[Sinclair 2005] Sinclair, Jim.   "Autism Network International: The Development Of A Community And Its Culture".   http://web.syr.edu/~jisincla/History_of_ANI.html

[Weekes 1996] Weekes, Lindsay.   "The Autism Picture Page".   http://www.picturepage.net

[West 1998] West, Dennis, and Joan M. West.   "Sending Cinematic Smoke Signals:

An Interview with Sherman Alexie".   In Cineaste v23, n4 (Fall, 1998):28.   http://www.lib.berkeley.edu/MRC/alexie.html

[Whitemore 2001] Whitemore, Hugh.   "Adapting history to drama: a dramatist's experience".   Niels Bohr Archive Symposium, September 2001. http://www.nbi.dk/NBA/files/sem/symp/whitemore.html

[Windling 2003] Windling, Terri.   "Changelings".   In The Endicott Studio Journal of Mythic Arts , Spring 2003.   http://www.endicott-studio.com/jMA0301/changelings.html

1. AS = Asperger's Syndrome.   I choose the term "AS individual", rather than "individual with AS", for several reasons (however shaky the syntactic ground may be, among philological purists, upon which I appropriate the use of the acronym "AS" as an adjective).   Please see the appendix on "person-first" language for an explanation of those reasons.

2. I wrote more about this in the introduction to the chapter on collective self-advocacy that I contributed to [Shore 2004].   Many years earlier, about a year and a half after my diagnosis, I wrote [Schwarz 1996], as a contribution to the website of autuniv-l, a listserv for current, prospective, and past university students on the autism spectrum and their families - a resource I wholeheartedly recommend to that population within the AANE community and elsewhere.   [Sainsbury 2000] and [Prince-Hughes 2002] both consist of writing by autistic student members of autuniv-l.

3. In [Schwarz 2004], the proceedings article for a workshop on ally education and empowerment I led at Autreat 2004, the annual conference/retreat of Autism Network International (http://www.ani.ac), another organization - in this case, an autistic-run self-advocacy organization - which my family and I have belonged to since Jeremy and I were diagnosed.

4. Sue Rubin, author of the film Autism Is A World , writes of "killing autism" ([Rubin 1995], [Rubin 2005]).   Her handicaps obviously loom large.   If there are any skies in which the stars are drowned out, hers is one such.   But it is also clear that she has internalized the equation of autism with deficit and individual impairment, and moreover, the false dichotomy that exists in the mainstream "conventional wisdom" about low-functioning and high-functioning autism and a supposed discontinuity between them.   I know too many people whose very existence and developmental histories refute that dichotomy.   See [Montgomery 2005] for one such person's eloquent thoughts on the matter, and follow the links in that article for more.   Also see [GTTO 2005], and follow its links at the end - they comprise a pretty good syllabus of writing in the autistic self-advocacy movement.

5. [Paradiz 2002/2005] and especially [Paradiz 2000], deal with the problems of "outing" historical figures who may have been on the autism spectrum.   [Ledgin 2002] takes up the idea of famous people who might have been on the autism spectrum as potential role models for those of us on the spectrum, making the assumption that such role models are a good thing and welcome among autistic folks - an assumption with which a sizeable fraction of folks on the spectrum appear to disagree.   And inclusion of some of the historical figures it profiles on the autism spectrum seems to be somewhat far-fetched, though [Ledgin 1998/2000] appears to be a solidly researched work of amateur history-writing.

6. [Shore 2004], [Schwarz 2004]

7. When I started writing this paper, I used the term "Native American" rather than "Indian".   But then I ran into Sherman Alexie's preference for "Indian" and his reasoning about it in [Canku Ota 2000], which resonated so strongly with the position I and most of the autistic self-advocates I know take regarding "person-first language", that I simply had to change the terminology I use in this paper to "Indian".   See the appendix on "person-first language" at the end of the paper.

8. See [Windling 2003] for a general overview of changeling legends.

9. Lorna Wing, the British autism researcher who brought Hans Asperger's work to the attention of the West in the early 1980s, makes this suggestion in her writing and speaking on the history of autism, as noted in [Autism99 1999]; see also [Purcell 2005], which makes reference to [Leask 2005].

10. Jean Kearns Miller is the author of "Mommy Wyrdest" and other segments of [Miller 2003], and also its editor.   Her observations on autistic and mainstream cognitive styles as "bottom-up" and "top-down", respectively, were made to me in private e-mail and in posts to ANI-L, the Autism Network International listserv, and to InLv, the Independent Living on the Autism Spectrum listserv run by Martijn Dekker, an AS man from the Netherlands, and sparked recognition and further thought on my part.   The "bottom-up" style amasses detail - often, in order to extend the reach of limited sensory processing bandwidth, amasses specifically variations from a previously known baseline - in order to generate a gestalt; the "top-down" style searches for and recognizes gestalt first - and then (often optionally) fills in detail.   The "top-down" search for gestalt should not be confused with searching for and matching against a set of known patterns, or against variations on known patterns - that is really a bandwidth-parsimonious coping technique for "bottom-up" minds in contexts in which "top-down" approaches have to be approximated or emulated.

11. We are a far-flung and very sparse population - much more so than the gay or Deaf population.   Many of us are in fact still isolated from one another - by geography, by lack of modes of communication, by lack of awareness of the very existence of fellow-travelers, by a dominant view that defines autism only in terms of deficits so that those who can "get by" without a diagnosis but who still share the subtler traits do not get identified as such, and for that matter are inhibited by social stigma from identifying.   Nevertheless, the Internet has served as a vehicle for communication, spanning both geography and handicaps; in fact, Martijn Dekker observed, in [Dekker 1999], that the Internet has served as the same sort of community cohesion for autism spectrum folks with access to it, that sign language has for the Deaf community.

12. Regarding puns: when Jeremy was 4 years old, one day amid the eleventy-third repetition of his favorite Raffi tape, which featured a song lyric "I love to ate, ate, ate, ayples and banaynays" that cycles through the long vowel sounds ("eat, eat, eat, eeples and baneenees"...), Jeremy sang along with "I love to ate, ate, ate, ayples and banaynays" - and then grinned slyly at me and sang "I love to seven, seven, seven..."
Note also that repetition is another common thread in the autistic aesthetic- consider the work of Andy Warhol.   As Valerie Paradiz writes about in [Paradiz 2002/2005], it is no accident that there are arrays of soup cans, Marilyn Monroes, auto wrecks, electric chairs, and so on.

13. Lindsay Weekes, original creator of The Autism Picture Page [Weekes 1996], maintains that the one emotional experience common to all people on the autism spectrum is fear.   In my case, the fears were definitely sensory - fears of loud noises, sudden flashes of light, anything that would flood me with adrenaline.   This was most intense in early childhood though still palpable into preadolescence.    The world gradually stopped being a frequently terrifying place for me by age 5 or so, but at age 10 I still caused a public scene when my 5 th grade class went for group pictures, because of all the flash equipment.   By adolescence I had learned to carefully watch the photographer's shutter finger, which would give me the split-second of cognitive preparation I needed for when the flash came.

14. An adjective I gratefully borrow from the title of Jane Meyerding's wonderful essay, "Thoughts On Finding Myself Differently Brained" [Meyerding 1998/2002] (and apply in the other direction: "different" is a symmetric relation).

15. [West 1998] "It's all based on the basic theme, for me, that storytellers are essentially liars... I think that line ["I want both"] is what reveals most about Thomas's character and the nature of his storytelling and the nature, in my opinion, of storytelling in general, which is that fiction blurs and nobody knows what the truth is. And within the movie itself, nobody knows what the truth is."

16. Elsewhere [Canku Ota 2000], I learned that Alexie was born hydrocephalic.   Hydrocephalus produces symptoms of nonverbal learning disability and hyperverbalism that widely overlap those of AS.   In other words, he is what folks in Autism Network International and elsewhere across the autistic community call a Cousin - someone who may have a "milder" set of autistic traits, or another condition that has a significant overlap in traits with the autism spectrum. Given the nature of Thomas, I was not surprised.    See [Sinclair 2005] for the story (truth, not lies :-)) of the origin of the term Cousin.   Also, forthcoming, is [Antonetta 2005], written by a Cousin about the commonalities of experience shared by autism and various Cousin conditions.

17. In [West 1998], Alexie is said to have noted that the storyteller/shaman role and the warrior role are the two Indian archetypes at all recognized by American popular culture.

18. Yet another voice in the autistic self-advocacy community.   Frank maintains a website [Klein 2001/2005] and moderates a listserv ( http://www.yahoogroups.com/group/AutAdvo ) devoted to autism self-advocacy issues.

19. The joke is sometimes made that academia is a "sheltered workshop for people like us".   But I think that the politics of career advancement in academia, and numerous other barriers large and small, put the lie to that notion when tested against reality.   Not to mention overt bigotry from some quarters within academia: [Seidel 2005] is an entry in the blog of Kathleen Seidel's wonderful neurodiversity.com website that documents the publication of, and reaction to, a particularly vicious recent instance of such bigotry - an opinion piece in the Chronicle of Higher Education Review by Mikita Brottman titled "Nutty Professors" [Brottman 2005] subsequently revised by the author and republished in the Los Angeles Times and now the Tallahassee Democrat.   It is all too easy to paint an entire population with the same brush, and all too easily damaging when it is done on the basis of bad experience with the individual characteristics of a few members of that population.   A similar characterization of a racial, ethnic, or religious minority on such a basis would be immediately and justifiably condemned as bigotry.   As is too often the case with those who seek to dismiss us on ad-hominem grounds, Brottman wraps her argument in the medical model of autism as entirely a disorder, a collection of deficits - and on that basis implicitly claiming that what she is doing is categorically different from racial, ethnic, or religious bigotry.   Such tactics underscore the need for increased emphasis on social-model-of-disability approaches to autism, to provide balance and to make sure that the positive aspects of autism get the mindshare they are due, that autism gets more widely seen as the simultaneous duality of disability issues and diversity issues that it is, and that it is not so easy to write us off as "damaged goods".   What is particularly frustrating about the appearance of Brottman's piece in the Chronicle of Higher Education is that two years ago, it published Dawn Prince-Hughes's groundbreaking, positive article about identifying and accommodating university students on the spectrum [Prince-Hughes 2003].

20. Turing's intellectual curiosity also went beyond mathematics into other disciplines in which his mathematical ideas or training gave him insight.   As described in various sections of [Hodges 1995], Turing's interests ranged from pioneering conjectures about neural networks and the organization of brain-like (rather than computer-like) intelligent systems, to inquiries into the basis for the occurrence of certain mathematical proportions in the morphology of living things.   Part of the tragedy of his loss is that we can only wonder what he might have led us all to accomplish, had he lived into the present day and had access to the computing hardware and infrastructure which we now take for granted.

21. Whitemore writes in [Whitemore 2001] about the difficulty of conveying a full-enough sense of work and insights as complex and unfamiliar to the lay public as Turing's, without losing or overwhelming his   audience.

22. See the opening paragraph of [Hodges 1995a], for example.

23. Jung's axes and categories of personality type, at least as applied by Myers and Briggs, and as popularized by Keirsey and others, are organized in fours.   I like to think of us folks on the spectrum as a "fifth column" in that context ;-), challenging the field to examine the bases upon which it sets the boundaries between "ill" and "well", between what it considers simply extremes within dimensional variation of psychological characteristics, and what it considers beyond-the-pale disorder.

24. Been there, done that.   Took me most of my twenties to work this out.   Many a mainstream adolescent boy goes through an abbreviated situation like this (boys much more so than girls, for whom libido tends to accelerate more smoothly and peak at about 30; for more on how gender differences play out in the diagnosis and expression of AS, see [Faherty 2002] and [Miller 2003]) - but in mainstream adolescent development the equilibration between physical drive and a developing social interaction framework that can successfully integrate the physical drive happens much sooner than it does for many AS folks.

25. [Hodges 2004].   Interestingly, Hodges describes Turing's personality as "awkward, uncompromising, and manic-depressive".   Unipolar depression - and episodic unipolar depression that in a creative individual capable of marshalling intense energy in pursuit of his or her creative fixations could be mistaken for the troughs of bipolar (manic-) depression - are common, oh so common, sequelae of AS.   Been there, done that; paid several shrinks enough to buy many t-shirts, before Jeremy's arrival and developmental trajectory led us to the framework in which my own situation all made so much sense.   With Turing, as with Gould, Thomas Jefferson, Einstein, and many others, there are existing explanations for all the singularities, but nothing truly makes the singularities make sense as a whole the way AS does.

26. [Fournier 2002]

27. Flourished 1 st century BCE; one of the great early voices of Rabbinic Judaism - perhaps the most influential upon centuries of thought to follow in the development of the Talmud and hence the Judaism we know today, two thousand years later.   But more than that: the ethical teachings of Jesus borrow heavily from those of Hillel and the school of Hillel within early rabbinic thought.

28. Goedel's theorem, which both Whitemore's Turing, and Turing in real life, refer to: a logical system cannot be both complete and consistent.

29. We also get into trouble where a nuanced reading of the Golden Rule is required: "do unto others as you would have them do unto you" works for a majority that generally considers the same sorts of things desirable and undesirable.   But if you are part of a divergent minority, then in order to succeed in navigating a world in which you are in the minority, you must become a student of what a dissimilar majority considers desirable and undesirable, even when it is alien to your own instincts.   The Golden Rule refines to " figure out and do unto others what they would have you do unto them, as you would have them figure out and do what you would have them do unto you".   See the appendix on theory of mind issues for related thoughts on this.

30. There is a book forthcoming from Jessica Kingsley Press, [Murray 2005], titled Coming Out Asperger , which includes a chapter by Jane Meyerding on disclosure in the workplace.   Given the quality of her previous writing, this is something I'm eagerly anticipating.   Workplace disclosure issues remain among the trickiest challenges facing adults on the spectrum.

31. See footnote 8 for references to changeling lore.   [Frith 1992/2003] has a chapter on feral children.

32. My son Jeremy at about age 4 was the spitting image of Jamie as played by Cillian Byrne in the film.   Ten years later, he is growing in his own way, at his own speed, but ever forward.   He is as drawn to computers as strongly as the "dark ones" were drawn to the sea.   Like Tadgh, he may be "daft" about some things his mind has not yet set to figuring out, but he is not blind.   My daughter Rachel is a modern-day Fiona: she understands Jeremy and kids like him better than any others I know who are not on the spectrum themselves.   This past summer she was one of two highschoolers hired on as counselors, the rest of whom were college and graduate students, in the summer day camp program for autism spectrum kids that Jeremy attends.   She really "gets it" about identifying and working with strengths and interests to address handicaps; she really "gets it" about establishing respect and value for autistic ways that are not intrinsically debilitating.   She is going to be one hell of an ally to autistic self-advocacy as she grows up.   On Roan Inish, there were more seals than people.   In our household, there are more cats than people - and Rachel is the one of us they hang out with and relate to the most.   My wife Susan, like Tess, recognized when the time had come to pack supplies and move to the island; she has been flexible living with a family that is the way hers has turned out - flexible in ways many in the mainstream could not be.   As Hugh says at the end of the film: "Would you look at us, back in Roan Inish!"

33. Jane was, in addition to her other writings cited, a contributing editor for [Miller 2003].   For more of Jane's writing, I highly recommend her website [Meyerding 1998/2005], especially her short essays she calls "Snippets".

34. At Autreat 1999, I attended a workshop on autistic forms of humor.   The four people closest to me in the room were all survivors of the inpatient mental health system - all of them autistic women who had been misdiagnosed with schizophrenia or other psychoses, mismedicated (in several cases almost with fatal results), and mistreated with "disciplinary" measures while locked up.   The fact that they could all be in that room, participating in a workshop on humor, says something important about the resiliency of the human spirit.

35. [Levine 2002]

36. Compare this to the dilemma regarding the absence in English of gender-neutral pronouns semantically suitable for use with sentient beings (a requirement which disqualifies "it/it/its").   There have been numerous coinages of proposed pronouns for the purpose, including one set adopted by Jim Sinclair, xe (nominative) / xem (objective) / xyr (possessive), which has gained currency in the autistic self-advocacy community - see [Pollard 2005] for further explanation.   It gained currency in our community because there is a need for it there.

37. See what I mean about needing gender-neutral pronouns?

 

 

 

 


 

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