Monday, October 23, 2017

A Change in Direction for the Federal Autism Committee

I am pleased to see that our government’s understanding of autism is changing.  For the first time, the IACC’s Strategic Plan recognizes that the needs of people living with autism today are paramount.  This portion of the introduction to the 2016-17 Update speaks for itself:

The IACC has moved toward a paradigm shift in how we approach autism. A few years ago, scientists saw autism as a disorder to be detected, treated, prevented and cured. The majority of research was directed at understanding the genetic and biological foundations of autism, and toward early detection and intervention.

Today, our understanding of autism is more nuanced. We realize that there are many different “autisms” – some severe, and some comparatively mild – and that ASD affects several distinct domains of functioning differently in each individual. We have come to understand that autism is far more common than previously suspected and there are most likely many undiagnosed children, adolescents, and adults in the population, as well as under-identified and underserved individuals and groups, such as girls/women with ASD, people in poorly resourced settings, members of underserved minority communities, and individuals on the autism spectrum with language and/or intellectual disabilities.

Most importantly, individuals on the autism spectrum have become leading voices in the conversation about autism, spurring acknowledgment of the unique qualities that people on the autism spectrum contribute to society and promoting self-direction, awareness, acceptance and inclusion as important societal goals.

Research on genetic risk and the underlying basic biology of ASD remains a primary focus of the research portfolio and does play an important long-term role in the potential to develop new and broadly beneficial therapies and interventions. These advances may one day mitigate or even eliminate some of the most disabling aspects of autism, especially for those on the spectrum who are most severely impacted.

However, balanced with the potential for long term efforts to lead to significant future advance and opportunities, is the importance of efforts that can have a more immediate impact. Individuals on the autism spectrum today will remain autistic for the foreseeable future; most of them have significant unmet needs. To help those people – who range in age from infants to senior citizens – we must in the short-term translate existing research to develop effective tools and strategies to maximize quality of life, and minimize disability, while also ensuring that individuals on the autism spectrum are accepted, included, and integrated in all aspects of community life.


The community has been very clear in its calls for more research into adult issues and better services and supports for the millions of Americans living with autism today. Recent studies of adult mortality have indicated that people with ASD are at higher risk of premature death than people in the general population, painting a very disturbing picture that bears investigation. In light of data and insights from the community, the IACC proposes a comprehensive research agenda that addresses the needs of autistic people across the spectrum and across the lifespan, including improvements to services, supports, and policies. The IACC also believes that, as many in the autism community have indicated, efforts to address the many co-occurring conditions that accompany autism should be made a greater priority.

Saturday, August 19, 2017

A Death in the Night, and Pause for Thought

This morning I arrived work to a disturbing piece of news.  “A pedestrian got killed by a car last night in . . . .”  Our complex is home to a fleet of emergency ambulances and we hear lots of things, but deaths still stand out.

“She used to live at the State School,” and “I remember seeing her cross the street with her cat on a leash.  Inside a cat carrier box.  Just pulling it along behind her.”   “She would just walk out in front of cars, and I guess one finally got her.” Later, comments following a newspaper article would describe her as eccentric, and “Our town’s most famous pedestrian.”

I perked my ears up at that, because the Belchertown State School was where teachers threatened to send me, forty years earlier, when I failed to meet their behavioral expectations.  The State School was a nasty place, a school in name only; a nasty warehouse for autistic and intellectually disabled people. 

That reflection and the news story made me wonder . . . was the person who was killed autistic?  I have no idea, but the way her story was presented gave me pause for thought. When a young autistic person is hit by a car, parents furnish the headlines, which usually read something like this:  “Autistic teen killed by car in terrible accident.”  The danger of wandering is often cited.

When researchers gather statistics on wandering deaths they look for headlines like that, and tally them up.  But what happens to the autistic people who get old, and have no parents to tell their story when they step in front of traffic?   People in the community shake their heads, and remember their eccentricity.  Some remember the institution where they used to live.  The headlines are noncommittal; “Pedestrian killed in late night crash.”

The cause could be anything.  

That story made me realize two things:

The role of autism and developmental difference in deaths of adults with disabilities is almost certainly significantly underreported when older people don’t have parents or others to present that part of the story.  Children "die from wandering."  Older people are just one more casualty, "hit by a car."

Parents who are concerned that their autistic child will walk in front of a car someday are right to be worried about what may happen when they are gone.  Many of us remain oblivious to cars and other dangers our whole lives, and for some, life is cut short as a result. Yet our freedom is precious, and not likely taken away or constrained, even when it leads us into danger.

Wandering presents the autism community with a difficult moral dilemma.  Autistic advocates argue that the “wandering” some parents call out is really an effort to satisfy curiosity or escape a stressful situation.  While that is surely true some of the time, what if the person’s escape takes them into the path of an oncoming car?

We’ve discussed this more than once at IACC, without seeing any good solutions.  Tracking devices don’t prevent people from falling in water or dying in roadways.  Locks present a whole host of problems as a type of restraint.  Supervision sounds like a good answer, but very expensive and frankly impractical on a 24/7 basis.

At some point, most cognitively disabled people are either left unsupervised in the community, or they end up in a group home, jail or some other form of institutionalization.  Many die early from accident or neglect.  And of those deaths, the contribution of cognitive disability to the premature mortality (for whatever reason) surely often goes overlooked.

In the case that caught my eye, the headline simply said, “Woman struck and killed by car.”

Would you – as a reader – have felt different if the headline had said, Intellectually disabled woman . . ., or, Autistic woman . . .?    

I think the addition of either of those words would have implied a connection between cognitive disability and the death.  They would give readers pause for thought, and perhaps make people think that some of the folks wandering the streets are more vulnerable to unwittingly step in front of a car than others.

But who would add the words?  The sad truth is, many cognitively disabled people live lonely lives, and at the end, there may be no one to tell our story.

I believe we have a duty to protect the vulnerable members of our society.  At the same time, I understand the feelings of those who say we should not have a duty to protect against stupidity.  It’s a matter of context.  People rightly object when our Coast Guard spends thousands to rescue drunken boaters.  The rescue of children and cognitively disabled people is a very different story because they do not “know better,” and often cannot help themselves.

If you agree with me, give some thought to the question.   Where do you think people with cognitive disabilities should live as adults?  If you agree the community is best, how might we protect people while still respecting free choice and self determination?  Can we, and should we even try?  Does the protection we extend to children just run out at some point in adulthood?

These are difficult ethical questions and they don’t have easy answers.


John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick. 


Thursday, August 17, 2017

More Questions About the Reliquary


The later Anglican church at Jamestown (as reconstructed at the turn of the 20th century)

It’s always hard to put ourselves in someone else’s shoes.  It’s particularly tough when four hundred years and vast cultural differences separate us.  Assumptions about how we think today, in a society informed by modern morality and a foundation of present-day science may be very far afield when set in the context of 1600 England or Virginia.

Today, when a new Catholic church is built, the bishop will oversee the installation of the relics in the altar.  In most new churches the relics are installed in a niche made for that purpose and the installation is part of a ceremony.  Things were very different in the Virginia colony in 1609.

There were no bishops in Virginia, nor were there any recognized Catholic clergy, though it’s possible Archer was a secret priest or deacon.  Nothing at all is known of the person who set the reliquary atop his casket.  All we can say for certain is that a traditional Catholic ceremony around the installation of relics would not have been possible in Virginia, in that day.

Catholics may have been tolerated in the Virginia settlement, but a Catholic church would not have been allowed.  The only place of worship would have been the first Anglican church and its successors.  Given that situation, did Catholics think of that as “their church” too?

If so, did one of them seize an opportunity to put the reliquary under the altar for that reason?  We don’t know.

Imagine that Archer brought the reliquary and its contents to America intending to place them in a place of Catholic worship.  But before he could do that, he died.   We don’t know if he died suddenly or after a period of sickness.  That means we have no idea if he had any opportunity to express a deathbed wish, and if so, if the reliquary was involved.

The reliquary was buried about 70 years after the Church of England broke with Rome.  While they had adopted some elements of the Protestant Reformation, there was still much similarity between Anglican and Roman rites.  Even today there is considerable similarity.  How might that have affected Catholics who attended services? 

Today we would expect a bishop or a priest to keep custody of a church’s relics.  The situation was very different in 1609 Virginia.  The colonists had come from an England where Catholicism had been outlawed and the many Catholic relics had found their way to safekeeping underground in Catholic homes. 

Consequently we could expect relics to be in the custody of leading Catholics in English communities, recognizing that “leading Catholics” had a different meaning in that day because almost all Catholics were underground due to persecution.

If Archer’s parents were such people, it would not be any surprise that they may have entrusted him with relics with which to establish a Catholic outpost in Virginia.  The fact that there was no bishop in Virginia may not have mattered, from the spiritual perspective of the settlers.  Life itself was enough of a struggle that they were forced to be practical and do the best they could.

While there is no evidence (as yet) that Archer was a secret priest we do know he was an educated man and he studied the law.  Today we would not be surprised to find a person of that description as a Catholic deacon, and that was likely true in 1600 as well.  Deacons and Vestrymen tended to be community leaders, and education is often a part of that. So, while we may never know if he was a priest, he may well have been a deacon and for purposes of Catholicism in Virginia, that may have served the same purpose.

Finally, I have a question about the meaning of the reliquary in that time and place.  I see its presence as a sign that Catholics were more tolerated at the colony’s founding than many scholars thought.  Yet the fact that it remained buried and lost for 400 years speaks to the fact that mortality and turnover was so high that knowledge of the original church – let alone the reliquary beneath it – could not be maintained.  Was Catholic tolerance – if real - indicative of broader toleration?  And who was tolerant, and who tolerated?


I will be interested in thoughts from the Anglican and Catholic community on this and welcome any discussion.

Saturday, August 12, 2017

The Reliquary, and burials in the Jamestown church

The Reliquary
It’s been several years since the discovery of a reliquary in a 1609 grave in the chancel of the first church in Jamestown Virginia.  The grave was that of Gabriel Archer, one of the founders of the Jamestown colony.  I’ve been surprised how little discussion this has stirred in the Anglican and Catholic communities, given the location in the oldest church in British North America.  The reliquary is the first clear evidence that saints, and the material culture of the Catholic Church, accompanied Protestant colonists to the New World.

The Jamestown settlement was established at a time when Catholicism had been driven underground in England.  After Henry VIII broke with Rome, Catholics – Papists, as they were called – were presumed loyal to Spain, and therefore seen as potential traitors to the English king.  The faith was outlawed, and churches sacked and shuttered.  That was a very divisive thing for many Britons, as so many of them were Catholic.

Some followed their King into the new Anglican faith, which was part of the Protestant Reformation sweeping Europe, while others preserved Catholic traditions underground.  Hidden faiths were dangerous, and many were executed in the spirit of religious fervor.  Henry’s successors veered back and forth between Catholicism and Protestantism, which tore the country apart with religious civil war.

Gabriel Archer was born into an English Catholic family in 1575.  Not much is known of his parents but parish records do show they were fined for being “recusants;” the name given to people who refused to attend and support the Anglican Church.

By the turn of the seventeenth century Catholics were more than simple religious dissidents because they owed their allegiance to the Pope, and not the King.  It could be very dangerous to be openly Catholic in England or its colonies back then.  Catholic churches were demolished but most often their relics, icons, and valuables were preserved at great risk by the faithful, to resurface at some future date.

That was environment within which Archer attended Cambridge University, and then studied law at Gray’s, one of the English Inns of Court.  It was probably there that he made the acquaintance of Bartholomew Gosnold.  The two of them traveled on expeditions to New England in 1602 and Virginia in 1607.

Gosnold and Archer arrived at Chesapeake Bay in late April 1607 and chose the site for James Fort the following month. The settlement of Jamestown would grow from the fort, which was carved out of forest near the James river. Archer was wounded in a skirmish with Indians shortly after, but he recovered and became the colony’s first secretary.  He's believed to be the author of several early accounts of life in Jamestown and exploration inland.  Archer returned to England with Christopher Newport in 1608, and went back to Virginia the following spring. He arrived in good health, only to die later that winter.  Later settlers would refer to one's first year in the colony as the “seasoning time,” and those who survived it counted themselves lucky, or blessed.

Disease was the biggest killer, with bad food and water a major contributor.  Accidents and injuries killed many more and finally there was the ever present danger of other humans.  Indians killed quite a few colonists, and colonists killed each other.  The winter of 1609 brought another killer - starvation.

Visitors to Jamestown today get no sense of what the original settlers faced when they disembarked from ships that had carried them from England.  Colonists arrived exhausted, often staving and sick, after a sea voyage that frequently lasted a month and a half.  Ships of that day were small, cramped, dank, and unheated.  The food the men ate (there were seldom any women) would not be fit for animals by modern standards, and the water was tainted and spoiled.  Disease often ran rampant in the confined space below decks, and there were voyages where the whole crew was decimated.

When the survivors arrived they found a swampy island that was home to poisonous snakes, malaria-carrying mosquitoes, and a suspicious native population.  The land of plenty they’d expected was nowhere to be seen.

From the beginning the colonists fought with the native population.  The English had better weapons but were vastly outnumbered, and to make things worse they were much less adept at living in that land. The survivors found themselves penned up in a fort at the tip of Jamestown Island.   As the winter of 1609 arrived the colonists were trapped.  Their crops had failed, and they could not venture outside to hunt or fish, for fear of attack. Behind the palisade walls colonists were reduced to eating snakes, rats, and ultimately, human corpses.

Evidence of the "starving time" and life in early James Fort can be seen today in the exhibits of the Nathalie and Alan M. Voorhees Archaearium at the Jamestown historic site.  A replica of the reliquary and its contents is also on display.

Back in the colony, as winter 1609 settled in, the colonists wondered if any of them would survive till the spring.  More than a fourth of them didn’t, and that was the setting in which Gabriel Archer died.  People were dying every day by that point, and most were buried naked, in shallow graves.   Archer must have been a very respected leader to have been buried in a coffin in the chancel of the church.  After the coffin was set in the ground, his captain’s ceremonial staff was laid beside his left arm, and a small silver box was set atop the casket above his feet.

Four hundred years passed, and in that time, the site of James Fort was lost.  Then the fort was found, and the walls reconstructed.  In 2013 the original church was located, and four graves were discovered in the chancel.  After much careful detective work each of the burials was identified, and the news was released in 2015. The graves contained the remains of Reverend Robert Hunt, the colony’s original Anglican minister, Captain Gabriel Archer, Sir Ferdinando Wainman, and Captain William West. 

Church burials of that day followed strict customs, one of which was that priests were buried to face the congregation, and congregants faced the priest.  Rev. Hunt had been the first to be buried in this church, having died in 1608.  He was interred facing the congregation, as would be expected.  Archaeologists were surprised to find Archer buried the same way.  Some speculated that Archer had  served as a minister after Hunt’s death, though no evidence of that has surfaced.  Others opined that he was buried that way out of ignorance as the colony’s only minister had died the year before, and not been replaced.  Finally, some believed he was a secret Catholic priest and his burial reflects that. 

So far, no evidence has come to light to support any of those theories.

Then there is the reliquary.  After Archer’s body was set in the grave, someone leaned down and set a small silver box atop the casket, at his feet.  The box was a reliquary holding human bone fragments and holy water.  The reliquary is traditionally a Catholic object that may have come from a church in England or Europe.  Analysis would reveal that the silver of the box was continental European in origin.

The identity of the saint whose bones are in the reliquary is unknown. The only markings on the reliquary are a letter M and some symbols that do not match any known Catholic graffiti.  One scholar (Christopher Allison) has made a case that the bones may be those of Cuthbert Mayne, a Catholic priest who was martyred in 1577.  

The actual reliquary next to a reproduction. The actual piece cannot be opened

Relics and reliquaries have no place in the Anglican church, and no other reliquary has ever been found buried in early Virginia. It’s a mystery why this one was set on Archer’s casket.

Even though the Anglican church dismissed the idea of relics, many people believed in their power, and the power of being close to Godly people.  That was the original reason people sought to be buried in monasteries and why in 1600 leading citizens continued to seek burial in church chancels – to be forever in proximity to ministers and their prayers.  Some Protestants and many Catholics also still believed in the eternal benefit of burial in proximity to saints.

In view of that, the reliquary’s position atop Archer’s casket, and Archer’s position within the church chancel may be signs of the great respect colonists felt for him, even in death.  There is also another possible explanation.  The Second Council of Nicaea had decreed that all Catholic churches have relics of a saint in their altars.  Some churches had relics embedded in or below the altar rail, but other churches buried the relics below the altar instead.

The position of this reliquary at Archer’s feet would have placed it in close proximity to the altar, and that might mean that the church was viewed as consecrated ground by both Anglican Protestant settlers and by Catholic colonists. That's particularly likely if Archer was a secret Catholic priest or deacon.  The historical record does show that there were Catholics among the first settlers, and there were surely others whose faith was kept hidden.

The reliquary's placement atop the casket may have been meant for the good of Archer's soul, or the benefits it would confer upon the altar above, or both.  We cannot know what anyone was thinking as they stood at his grave but it seems likely that whoever placed it there had one of those purposes in mind.  The most we can do is interpret the find in light of what's know of religious tradition and the times.

Some scholars ask how we know the reliquary belonged to Archer.  The fact is, we don't.  All we can say is that the reliquary was carefully placed atop the casket with an east-west orientation, and the dirt filled around it so as not to disturb that orientation.  From that evidence, and the evidence of the reliquary itself we can say the object had great significance.  It was probably Archer's, but we cannot be certain.

That leads to another question - what was a Catholic reliquary doing in the Virginia colony? The construction of this particular reliquary was fragile - a sliding door that could easily open and spill the contents. The reliquary was pocket sized, but too big to be carried like a locket.  That suggests the reliquary had been stored in a protected place, and not carried.  The most likely reason it was in Virginia was that it was carried there in hope of consecrating Catholic ground if and when the opportunity arose.  The number of relics in the box suggest it came from a church, as opposed to the smaller or more ephemeral personal relics some Catholics maintained.

With that interpretation, it's tempting to jump to the conclusion that the reliquary is evidence Archer was a secret priest, since only an ordained member of the clergy could have consecrated a church.  However, the Anglican church had similar rules about what lay people and clergy could do, and what required a bishop, and those rules were commonly ignored for practicality in the Virginia colony.  Archer might just as well have been a devoted lay person who was entrusted to bring the relics and establish a church in Virginia.  Many of the later Virginia churches would be established by lay vestries, who sought out ministers, contrary to the practice in England or Europe, where churches were established by the bishops.

Whoever carried the reliquary to Virginia was almost certainly a person of stature in the Catholic community they came from in England, to have had the object in the first place.  They brought it here with a purpose, which may well have been accomplished when it was buried beneath the altar rail.  However, the church was abandoned within a few years, and the reliquary remained untouched; buried for the next four centuries.

Earlier excavations in basements and trash middens at Jamestown have revealed a number of Catholic crosses and rosary beads.  In earlier interpretations, the Jamestown colony was a strictly Anglican place where relics and crosses had no place.  Consequently those items were dismissed as trade goods; junk that might have been bartered to natives.  Discovery of the reliquary on Archer’s casket casts doubt on that interpretation.

A cross recovered from a Jamestown site circa 1609
Rosary beads from Jamestown, circa 1610


The reliquary and captain’s staff were carefully placed into the grave, begging another question: was the reliquary a sign of religious tolerance in the colony?  It may be that Catholicism was more openly accepted that historians believed, but the fact is such views must have varied greatly from one individual to another.  All the men buried in the chancel died before their 40th birthdays, evidence of the great mortality in early Virginia.  A tolerant leader was just as likely to have an intolerant successor, as the records show.  

One consequence of this high mortality was that things were often lost in early Virginia.  One would think that a church building would be central to a community, and the burials within would be respected and maintained.  Yet the evidence shows that this church burned down or fell down within ten years of Archer’s burial, and knowledge of it was lost after a larger brick church was erected about fifty feet away.   Even that was forgotten when the original Jamestown settlement was abandoned in the following century. 


The original church outline, as reconstructed by Jamestown Rediscovery

The chancel of the first church in relation to the later brick replacement.  

The chancel burials, from Jamestown display

Traditions of religious tolerance did not develop in Virginia until the arrival of women in large numbers, and the birth and survival of children. That allowed for the development and maintenance of a continuing culture.  Prior to that Virginia was essentially a military garrison, and such places are not known for tolerant views.

Jamestown archaeologist Merry Outlaw among some of the many objects they have  conserved

Scholars continue to study the reliquary and the context in which it was found.  My own interest in it is rather tangential, and bears explaining.  My area of study is autism, and how autistic people fit into the context of history.  I am autistic myself, as was my father and as is my son.  There is considerable evidence that autism like mine has been woven into the human genome for thousands of years, maybe considerably longer.  When I was born, my father was a Protestant minister, and we have many clergy in our family tree reaching back to Roland Jones, who held the pulpit in Jamestown and nearby Middle Plantation in the 1670s. My ancestor was buried beneath the chancel of the Middle Plantation church (known as Bruton Parish today) in 1688.  That give me a personal connection to the story, though I have no connection to Archer or anyone else mentioned here, nor do I have any reason to suspect they were autistic.


That said, I believe autistic people have long found a home in the church, and that is the context in which I study history of the early Anglican Church in America and England.

John Elder Robison

Thanks to Merry Outlaw, Jim Kelso, Jim Horn and the staff at Jamestown Rediscovery for graciously sharing their time, knowledge, and discoveries, and my William & Mary colleague Karin Wulf, head of the University's Omohundro Institute of Early American History, for making the connection.

John Elder Robison is an autistic adult and advocate for people with neurological differences.  He's the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the US Dept of Health and Human Services and many other autism-related boards. He's co-founder of the TCS Auto Program (A school for teens with developmental challenges) and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.  

The opinions expressed here are his own.  There is no warranty expressed or implied.  While reading this essay will give you food for thought, actually printing and eating it may make you sick.