Discussion was dominated by two stories, that of 13-year-old Adam Race, against whose parents a priest filed a restraining order, and of 5-year-old Alex Barton, who was voted out of his kindergarden class by his classmates, at the suggestion of his teacher, Wendy Portillo. These two incidents sparked some very heated and often acrimonious exchanges and remind me of why there’s a need to think about autistic persons and the community, in faith communities and all others.

Also: It was reported that there had been 72 cases of measles so far in the US, the highest number since 2001—-and the number would only go up, while misinformation about vaccines continued.

Sometimes it seems that everything, if not anything, could be said to cause autism (and that everything, and anything, has been offered as a “potential treatment for autism”). New tests to detect signs of autism in younger and younger children and, indeed, in babies were reported.

A New Yorker article on neurodiversity provided a simple answer to the question of where are the autistic adults?

And in May of the year when I started learning more and more about employment and housing for autistic adults, Charlie celebrated his 11th birthday–and am I always glad to be Charlie’s mother.

Lately hormones have been on my mind a lot. “It’s those hormones,” someone seems to say at least once a day in reference to Charlie. Not only has he grown some six inches this year (that’s what Jim and I have been estimating). Physically, he is really growing up: For the past few weeks, it’s become very apparent that his voice is changing (though I still hear, mixed in with new, lower tone, the familiar light voice that is Charlie’s). At times his moods seem to change in a split second or less. I’ve been remembering back to my own adolescence and to how waves of feelings seemed to arise in me with no warning, and how these weren’t always expressed in the best of ways, as I didn’t know how to express what I was experiencing—–and if that’s what Charlie is feeling, it’s compounded by his minimal language, and especially language to describe feelings; to communicate.

It’s the hormone—or rather, a hormone—that some are pointing to as providing a way to enhance and even improve social ability in autistic persons. The hormone oxytocin is referred to both as the “trust” hormone, as it plays a role in bonding between parents and babies and between adults. It’s also called the “love” hormone, and seems to play a role in social and repetitive behaviors. The November 29th Australian reports on oxytocin as a treatment of potential promise:

….research, funded by the federal Government’s National Health and Medical Research Council to the tune of $180,000 over two years, is testing the ability of a naturally-occurring human hormone, oxytocin, to improve the ability of people with autism to recognise and react to emotions and to interact socially.

Currently, there are no effective treatments that directly tackle the complex and still mysterious disorder, although various drugs (such as antidepressants) and behavioural therapies are available to ameliorate its symptoms.

40 males aged 12-20 with an autistic disorder are being recruited; they will be given a nasal spray to use at home (This mother tried the nasal spray for her 21-year-old son with Asperger’s, with these not expected results.)

Stewart Einfeld, co-director of Centre for Autism Research, Education and Service (CARES), is quoted as saying:

“It’s one thing to say that the capacity to understand emotions is improved in an experimental setting…….It’s another thing to say that as a consequence, they are functioning better and are able to get better jobs or are living more independently. You can’t be predicting too many long-term benefits until you have done the work.”

If I may say so, regardless of whether or not “it’s those hormones,” love and trust—-love for Charlie, the love among him and Jim and me, and the trust (and faith) that we have in him and hope he has in us: These have had plenty of benefits (and more) for Charlie, and for us.

h/t to Kathy!

I never got around to making a list of last week’s top posts last week so here’s two weeks of “top posts” about autism. Rather than arrange them in chronological order, I’ve arranged them by topic:

My son Charlie turned 11 last Thursday, on May 15th. Life on the road with Charlie is my constant theme here and these posts are about his sensory sensitivities, his beloved bike rides with his beloved dad, and other things I’ve been learning on our journey. (In the photo, he’s enjoying a birthday dinner of sushi and cake on Jim’s desk.)

• Too High-Pitched to Hear
  It was a couple of months ago that my son Charlie started—for the first time in his life—to show sensitivity to sound by putting both hands over his ears.
• The Final (Bike Riding) Frontier
  Learning to use the gears is—as Jim proclaimed when he and Charlie came home after bike ride #2—the “final frontier.” Who knows what hills and mountains await?
• Back in the Swim
  Charlie goes for a swim in the pool at Saint Peter’s College in Jersey City.
• Parenting Isn’t Easy, Period—and I’m Very Glad to Be a Mother
  On Mother’s Day, an essay by Robert Hughes in today’s Chicago Tribune is entitled What Autism Means to a Father.
• Statements to the IACC (and what happened on Monday)
  Statements to the Interagency Autism Coordinating Committee by Paula Durbin-Westby and myself.
• The Ides of May
  Happy Birthday to Charlie on his 11th birthday!

Several posts about science and research, causes and treatments:

• Biomed, Anecdotal Evidence, and Thoughtful House
  Whether or not to try biomedical treatments is a question that’s perhaps unavoidable for parents with an autistic child today.
• Autism and Parents with Psychiatric Disorders
  The risk of having an autistic child is doubled if a parent has schizophrenia or if a mother has psychiatric problems (depression, personality disorders), according to a study published in Pediatrics.
• The Puzzling Spectrum of Autism Causes
  What do TV, ultrasounds, insufficient vitamin D, air pollution, a mother having the flu while pregnant, mercury, have to do with each other?
• Just When You Thought You’d Heard Every Possible Treatment for Autism…
  …..here’s another one to add to the list.
• Charges Dropped Against Dr. Roy Kerry
  Charges have been dropped against Dr. Roy Kerry, the Pittsburgh-area doctor who was accused of causing the death of 5-year-old Abubakar Tariq Nadama.
• The Gluten Free Frenzy
  How many people have been telling you that they may be intolerant to gluten?
• Antipsychotics in Kids, Weight Gain, and Parental Worries
  A new study on the use of antipsychotic medications in children indicates that taking these drugs results in an almost immediate increases in body mass index (BMI) and triglyceride levels.
• Everything Causes Autism (Or So it Seems)
  What hasn’t been cited as a cause of autism?
• Genes Linked to Social Impairments
  A new study in the May 15th Biological Psychiatry has found genetic links to the “impaired social behaviors”; of autistic children.
• Regressive Autism and a Test for Babies
  Researchers at McMaster University in Canada have developed a new test that can, it is said, detect signs of autism in babies as young as 9 months old and I suspect that this test might have detected “something” in Charlie when he was that age.

Some posts about autistic adults and employment, services, and places to live.

• Symposium on Employment for ASD Adults
  Some great advice in this comment from a job developer/job coach for adults with disabilities, and the father of an autistic son.
• Where Are All the Autistic Adults?
  The British government has announced that it is planning to calculate the number of autistic adults in England, but the tools for diagnosing autism in adults are neither as valid nor as reliable as those used for children.

The vaccine issue, inevitably:

• Yes, the Vaccine Question Again
  Another round of “vaccine court” begins on Monday, May 12, with the case of William Mead and Jordan King.
• “Open Questions” about Autism, and Vaccines, and Much More
  CBS News correspondent Sharyl Attkisson interviews Dr. Bernardine Healy, a former head of the National Institutes of Health and a member of the Institute of Medicine.
• Paul Offit on Hannah Poling and the VICP
  In the May 15th New England Journal of Medicine, Dr. Offit revisits the case of Hannah Poling in light of the recent history of the Vaccine Injury Compensation Program (VICP).

Some recurring issues: Is there a real increase in autism—what do you if your child stomps and jumps and you live in a second-floor apartment—how do you take an autistic child to church—do you still feel any shame and stigma when people learn that your child, or you yourself, is/are different?

• The So-Called Autism Pandemic
  The term “autism pandemic” strikes me as a not exactly subtle attempt to make the rise in the prevalence rate of autism seem to be much more extreme, and scary,
• Stigma and Pride
  More people with severe forms of mental illness such as schizophrenia and bipolar disorders are now speaking out about their “demons” as part of “Mad Pride.”
• Oregon Family Wins Discrimination Case
  An Oregon family has won a $40,000 settlement from a Portland, Oregon apartment owner and management company.
• Autism and Faith: A Journey into Community
  Autism and Faith: A Journey into Community is a new resource for clergy, religious educators, and families of autistic children to develop “inclusive spiritual supports” for autistic individuals in religious settings.

Autism and Faith: A Journey into Community is a new resource for clergy, religious educators, and families of autistic children to develop “inclusive spiritual supports” for autistic individuals in religious settings. The 52-page guide was developed by the Autism and Faith Task Force of COSAC, New Jersey’s main autism organization, and the Elizabeth M. Boggs Center on Developmental Disabilities, which is in the Department of Pediatrics at UMDNJ-Robert Wood Johnson Medical School. More about the guide:

The Task Force worked for more than two years collecting stories and experiences from families, best practices and strategies from clergy and human service professionals, and resources from around the country.

The guide features more than fifteen short articles written by clergy, parents, professional experts on autism, religious educators and people with autism, illustrated by numerous sidebar stories and examples from families who shared their experiences, both positive and negative, with their own faith communities in New Jersey. It is interfaith, including examples from Christian, Jewish, Hindu, and Muslim communities.

There’s also some first-person accounts by autistic individuals.

The guide was edited by Mary Beth Walsh, PhD, and Alice Walsh, MDiv (both of whom are parents of autistic children) and Bill Gaventa, MDiv. Mary Beth Walsh and Bill Gaventa also spoke at the 2006 conference on Autism and Advocacy at Fordham University that my husband, Jim Fisher, put together. (Video clips of the conference can be seen here and provide more insights into the work of “inclusive spiritual supports.”)

A number of the guide’s sections feature practical suggestions for including autistic children and adults in religious settings, such as seeking out a family-oriented service where a little noise is not uncommon; familiarize your child with the physical space of the sanctuary; use concrete language and visual aides when instructing a child; make a point of introducing yourself and your child to your religious leader before attending a service.

Jim and I contributed an essay to the guide, “Autism: Presence & Justice.” The essay is mostly Jim (he’s a cultural historian of religion) and much less of me. (As in, much, much less.) Here’s the last paragraph of the essay, which puts the issue of including autistic individuals in religious settings into a broader framework:

……the inequality of educational opportunities for persons with autism is not simply a matter of public policy, but social justice. This disparity closely mirrors inequalities of economic status, which in turn are often grounded in legacies of racial inequality and de facto residential segregation that relegates persons who are cognitively disabled and poor to substandard educational programs. Everyone in the autism community knows just how unequally distributed are these vital and indispensable educational services, from early intervention to classroom teaching to vocational training. These inequalities are further evident from delayed diagnoses to inadequate services that can lead to physical harm done to autistic persons or members of their families. The fundamental inequality of autism services—and the demeaning competitive scramble into which most families are driven—call for action grounded in moral and religious convictions on the dignity of all human persons.

The guide can be ordered via the Boggs Center (the first copy is free for residents of New Jersey); theDaniel Jordan Fiddle Foundation provided support for the project.

“…there might be a deeper meaning to the series as a whole. This is something I touched upon on my own post for today (autism and spirituality–maybe they’ll get that angle right).

wrote one commenter after watching ABC’s new legal TV drama, Eli Stone: In reading responses and commentary on the show, I’ve been struck at how often people have talked about faith—a New York Times editorial about the show is entitled Eli Stone’s Overleap of Faith—and stating that they appreciate the show because it brings other topics into the discussion about autism. While the court case that Stone successfully argues involves vaccines and “mercuritol,” a stand-in for thimerasol that is claimed to have caused a child to become autistic, it is matters of faith and spirituality that people seem particularly to be eager to hear about in regard to autism.

It does seem to me that people—certainly parents of autistic children—want to make sense of their experience; they want, they need, some kind of support to get through each day. Some focus themselves on uprooting why their child became autistic, and the belief that vaccines or something in vaccines directly caused a child to become autistic provides a straightforward answer, a simple answer such as can be explained within the time frame of a one-hour TV show. But life raising an autistic child is—like child-rearing as a whole—a 24/7 matter and a real representation of what it’s really like, and real explanations of what causes autism, are perhaps too large, too messy.

That’s why my preferred metaphors for describing what life with Charlie is like are those of the journey and the long and winding, rocky, road, around whose bends who knows what adventure awaits; it’s why I also think of our life with Charlie as an epic, as a long narrative full of exploits and travels not altogether unlike, if you will, the stories in the ancient epic poems of Homer, the Iliad—-the story of Achilles in the Trojan War—and the Odyssey—-the story of Odysseus’ long journey back home to Ithaca. I do think of my son as the hero of such an epic (and have written of him as such): Certainly the courage, bravery, determination, sheer will he displays in trying to write the /s/ of his last name, to pedal over a few more streets with Jim, to wear a stiff new pair of basketball shoes, are equal (in this mother’s eyes) to Achilles standing before the walls of Troy or Odysseus facing the Cyclops. Certainly I feel myself to sometimes be in the role of Achilles’ mother, the sea nymph Thetis who tried to make Achilles invincible by dipping him, while a baby, into the waters of the River Styx: I feel I’ve done everything I could to help and protect him, but sometimes things just don’t work out and I become a witness to the suffering. Certainly I sometimes feel I’m standing up for Charlie and my belief in him just as Antigone stood before King Creon in Sophocles’ tragedy, and tells him that is it the laws of the gods she following in breaking the king’s law and burying her dead brother, who was Creon’s enemy.

I don’t know what it is about life with Charlie. Somehow, so often, things seem to be in sharper focus, small things become the stuff of great concern and of celebration. Casual conversations begin not with pleasantries about the weather, but with “he’s been up since 3.30am and I have to.” Trips to buy a basket of groceries become the stuff of household legend, not to mention visits to the dentist and in the barber’s chair. The other evening Charlie and I went out for a pre-dinner walk. Though it was to rain the next day, the sky was so clear that I could see a full zodiac of constellations: I sighted the Big Dipper, Cygnus the Swan, the hunter Orion, all duly pointed out to Charlie who was happily sloshing through some dead and muddy leaves. The ancient Greeks used those same stars to navigate their ships, I thought, rather grandiosely, and here Charlie and I are, looking as ever for a way to chart our meandering course, seeded with surprises.

I am not at all sure if Charlie will ever be able to read any ancient literature; simple, single words are a challenge enough for now. He never gives up, we never give up, and sometimes it’s just a dogged faith that keeps us going on—last and first, a simple faith in Charlie, that he can.

And to me, that’s why Charlie’s story is a part of a much bigger, and (just to sound a grandiose note again) a timeless, story.

According to Access Hollywood, an autistic boy plays the autistic child in ABC’s comedic legal drama “Eli Stone,” scheduled to premier tonight. This is an interesting development, to have an autistic child playing an autistic child: People have often questioned and criticized the accuracy and authenticity of actors and actresses playing autistic characters, as Dustin Hoffman in Rain Man and Sigourney Weaver in Snow Cake.

It is, though, all the more unfortunate that a vaccine—via a fictional substance called “mercuritol“—is said to be why William, in the child in “Eli Stone,” has autism. Will a future episode make mention of,or even show the child undergoing chelation—-in which medications are given to a child to remove heavy metals from the blood and so to “detoxify” the body—or other “alternative, biomedical treatments“? Will the autistic child on this TV show be allowed to remain autistic?

Julie Deardorff who writes Julie’s Health Club for the Chicago Tribune suggests (after seeing the pilot of “Eli Stone”) that the show is not about autism:

….., the autism in the story line is almost incidental given all the other loopy things that are packed into the pilot. The show is not about whether vaccines cause autism. It’s about the redemptive powers of faith. What the episode’s conclusion really asks is: Which is the greater force in life: science or faith

Deardorff writes that the “autism-vaccine debate” is about what people, and specifically parents of autistic children, believe, the scientific evidence that there is no link between vaccines and autism, or their own faith that one day their child was “normal” and the next, post-vaccination, autistic. “It won’t matter how many studies show there is no link between vaccines and autism,” writes Deardorff. “We all believe our own truths.” We do indeed: Last June, during the Cedillo trial in which the parents of 12-year-old Michelle Cedillo claimed that she became autistic after receiving a vaccine, essays by journalist Arthur Allen and anthropologist Roy Richard Grinker both discussed why there is no dispelling an autism-vaccine link. Writes Grinker:

Two distinct communities have emerged, and though they both employ the language of science, their ideas are simply incommensurable. The two groups co-exist, like creationism and evolutionary biology, but they operate on such different premises that a true dialogue is nearly impossible.

The idea behind “Eli Stone,” as revealed in media reports, is that a highly successful, seemingly selfish lawyer who has—with little apparent regard for ethical concerns—-fought on the side of corporate America, undergoes a sort of conversion experience and decides instead to fight for the “little guy”—the “vaccine-damaged” child of a single mother, in the first episode. Why this conversion occurs is a matter of science or faith, as Deardroff writes: When Stone starts to hear George Michael singing, is this the result of a brain aneurysm or because Stone is some sort of 21st-century prophet?

Some will continue to believe that a vaccine or something in a vaccine caused their child to become autistic, even as yet another study disproves a link between autism and mercury and/or vaccines—-perhaps it all depends on what script you’ve decided to follow, and who’s playing what part.