16 months ago, Olivia Agbonlahor and her 7-year-old twins, Great and Melissa, were deported from Clonakilty, County Cork, in Ireland, to Nigeria. Great is autistic and, as reported in the Irish Indepedent, he is considered “wicked” and “possessed by voodoo” in Africa.

Great’s autism is simply not recognised due to the common stigma in Africa against autism. “I have to do my best, but it is not easy,” said Olivia.

“His behaviour is getting worse every day — that is the problem. He cannot play with other children. People ask ‘what is wrong with this boy’ all the time,” she said from her home in Ghana.

While the teachers that helped the family when they lived in Clonakilty and Killarney have sent over computer learning aids for Great, there is little else to occupy him.

“The only thing that keeps him calm, that he can stay with when you leave him is the computer — there are some CDs that they burned from Ireland, the special needs assistants for him, to be practising,” said Olivia.

“He can do that for hours but he cannot be doing that all the time, it is not good.

“In Africa they believe that there is something which is wicked about him — that is the problem. It is always the case, there is a lot of stigma. That is Africa, everywhere.”

The Irish Independent notes that there is only a “slim chance” that the Agbonlahors will be able to return to Ireland, after they were ordered to deport by the High Court. The family currently lives on money sent by Olivia Agbonlahor’s husband, who is in Italy.

The Global Autism Project exists to “to address the needs of children with Autism in developing countries, to address the fear that plagues parents of children with Autism where there are few resources, and little or no understanding of Autism.” I am trying to contact them to find out how we might help the Agbonlahors—-and if you have any ideas, please leave them in the comments below.

Back in July, it was reported that the rate of autism in Somali children in Minnapolis was notably high. According to the Minnesota Department of Education:

in the Minneapolis’ early childhood and kindergarten programs, more than 12 percent of the students with autism reported speaking Somali at home. According to Minneapolis school officials, more than 17 percent of the children in the district’s early childhood special education autism program are Somali speaking.

Almost 6 percent of the district’s total enrollment is made up of Somali-speaking students, and about 6 percent of the children in the district’s overall early childhood and kindergarten special education programs are Somali.

Speculation about what could be causing this “cluster” of autism cases in so specific a population immediately started up, especially among proponents of environmental causes of autism such as journalist David Kirby. Mike Stanton at Action for Autism gives an overview of all this, and notes how Kirby and others sought to connect the Somali autism rate—or, more precisely, the rate of autism among children born in the Minneapolis area to immigrant parents from Somalia—to vaccinations, and also to a theory that a Vitamin D deficiency can be linked to autism. Dr. Steve Novella at the Neurologica blog writes specifically about the notion of a “cluster” of autism cases being found:

apparent clusters of diseases are reported all the time. Most of the time the clusters are not real, meaning they are just statistical flukes. So the first question to answer with any apparent cluster is - does this represent a real epidemiological phenomenon.

……….

One problem with the cluster hypothesis is that other immigrant Somali communities have not experienced increased autism rates. If there is an environmental trigger causing the two identified clusters, why are there not clusters in these other communities?

If it turns out to be true that autism rates have significantly increased in some Somali immigrant communities, above what is seen in Somalia or in non-Somali in the same communities, then we can conclude that something is going on and a potential trigger should be sought.

It also has to be noted that autism is really a collection of diseases, not a specific disease. So we may be seeing a new entity that has clinical overlap in features and symptoms with recognized forms of autism.

Dr. Novella writes that more investigation is indeed needed about the Somali “cluster” and if it is real, and what factors might be playing a role, whether genetic or environmental. He references an article from the Simons Foundation Autism Research Initiative that cites Judy Punyko, an epidemiologist at the Minnesota Department of Health. I August, Punyko formed a study group of 12 experts (including epidemiologists, physicians, school administrators and special education teachers) to study the rate of autism in Somali children in Minneapolis with “age-matched controls.”

Even then, she adds, educational data may be incomplete or inaccurate. The 13 special education categories reported to the state and federal government are intended to help provide a child with the best available educational services. If a child has two conditions, such as autism and developmental delay, they can only be assigned to one primary category; Minnesota does not require a medical diagnosis of autism to be included in the category. Finally, some schools, especially those in poorer districts, often overlook mild forms of autism.

Population data used for the analysis also comes from the 2000 census, which may be vastly different than current numbers. “The population of Somalis is a fluid number in Minnesota,” says Punyko.

Mike Stanton also notes that “in Minnesota there is no reliable epidemiological data for autism”—because, as he points out, the “administrative data for children in receipt of autism services” is based on “teacher assessment,” with a diagnosis from a “trained clinician” not required.

I know this from experience: My son was first evaluated for “delays” in Minnesota, by a Child Study Team from the St. Paul Public Schools. That was in the spring of 1999 (he wasn’t 2 years old yet) and he immediately started to receive services (speech, OT, and special ed, only a few hours each week). He wasn’t actually diagnosed with autism until July of 1999 (and the only change in the services was that he qualified for more hours of special education, which we were urged to have him receive in a school setting, rather than at home—that classroom was not appropriate for Charlie—but this is another story, and a whole ‘nother post). Also (and this is completely anecdotal), a number of Somali families lived in a high-rise apartment that was right next to the building where Charlie’s pediatrician had his office, and there were many Somali mothers with strollers and young children waiting beside us among the little tables and fish tanks in the waiting room). (And, also really anecdotally, no Somali children in Charlie’s special ed program in St. Paul, back in the summer of 1999.)

One question that (following on today’s earlier DSM-V post) needs to be addressed is how cultural factors might be at work here. And Dr. Novella writes that

Somali parents certainly believe they are experiencing something new, and some pediatric neurologists in these areas have had their suspicions also. But this is not enough to form a scientific conclusion - only to justify further research.

The true autism rate in Somalia needs to be investigated also. We should not assume that because the culture does not recognize autism it does not exist.

Besides keeping in mind the particular conditions that a child is said to be “autistic” in Minnesota—again, a child can receive autism services through assessment by a teacher (as my son did) and without receiving an official diagnosis from a “trained clinician”—we need to get a better sense of how autism is understood in Somalia, and what the numbers there are, and how these are determined.

So as you may not, or may, have noticed, there is still some wonkiness going up with this blog. The good folks who handle are matters technological, software-related, and the like, have been working hard to migrate b5media’s blogs over to a new server and all should be well, webpages should load and updates occur, very soon. One (”adverse effect?“) of the server migration has been that the sidebar (to your right) has not been updating with recent posts and recent comments. So if a comment is left on a post written a couple weeks or months ago, unless you’ve decided to sit down and read every single post (which I don’t recommend; some posts are more post-worthy than others), some good comments will go missed. I’ve rounded up a few of them below, with a bit of my own responses, and many many thanks for everyone who reads Autism Vox and lets me know what you think.

Anatasia Hulke was found on Monday afternoon, after she’d been missing from her home since Thursday.Regan commented on a bulletin about educational policy from the National Down Syndrome Society and pointed out a Nova video about autism, genes, and a tale of two mice.

A post about late talking written in July continues to draw comments, including this one from John which argues that autism and other disabilities like dyslexia are currently over-diagnosed.

I would counter, they are being diagnosed more because we understand them more and can better identify them, and this notion of better diagnosis needs to be considered in investigating why the rates of autism in Somali children in Minneapolis have increased (here is a commenter, Ali, on this topic).

A commenter, Mindy, asked another commented about seizure medications, Sensory Processing Disorder in a post on sensible accommodations for sensory issues. A couple of friends have been talking on and off about the possibility of using medication for their children. My son’s been on medication since he was 7 and the decision to use it was not lightly made; the medications’ effects are carefully, continually scrutinized. (We’re going to visit Charlie’s pediatric neurologist on Friday to talk about this and some other things.)

The father of a teenage boy asked this question in a post on talking to oneself:

I’ve noticed my 16 yr old boy pace and talk to himself a few times. He is still a bit uncoordinated and has a tendency to walk looking down instead of his head up or stragit ahead. He has above average grades and excels in Japenese but he is a bit sluggish with physical acitivities. I’m a bit concerned becasue his mother (the ex) suffers from schizophrenia and his older brother devleoped a psychois at about 20 yrs of age but had bad grades and drug use may have contributed. Should I be concerned?

Some things I’d ask: Are the pacing and the looking down and the sluggishness long-time behaviors, or relatively new? Are these things affecting him in school or otherwise; does he generally seem happy and all right with things? If he only talking to himself, or also talking to others? Just some thoughts……

Another commenter, Jim Blair, asked me a question in the midst of a comment, quoted here in full; the original post was on prenatal testing (a topic of particular now because of whose youngest son, Trig, has Down Syndrome:

Kristina Chew says:

“And a life without Charlie is a life that neither I nor my husband Jim can imagine, nor would we want to.”

Hi,

Follow me in a hypothetical thought experiment. Imagine that your Charlie had been born a “perfect child” as seen by most people. Suppose he were to grow up to be–depending on your preference, an all star New York Yankee shortstop or Nobel Prize winning scientist. Call him Charlie II.

Would you then make the above quoted claim?

Now suppose that as the result of prenatal genetic testing Charlie I had been aborted and 6 month later Charlie II conceived. Think you would still choose the Charlie I that was never born to the Charlie II that was never conceived?

Of course not. Because we only know the things that ARE and not the things that might have been had we made different decisions.

I thank Jim Blair for taking the time to write out this thought experiment, though I find him to be a bit presumptive about how I would respond to his question. According to him, had I known via prenatal testing that Charlie (”Charlie I,” in the thought experiment) had autism, I would have chosen to abort him, thus making it possible for the conception and eventual birth of a most hypothetical “Charlie II” who would grow up to be an “all star New York Yankee shortstop or Nobel Prize winning scientist” and who, endowed with such an impressive future, would be a child that people would wish to have, and would indeed even consider to be a, if not the, perfect child.

I hope that Jim Blair keeps reading this blog (especially once the software issues gets resolved), as he will then find out why I know that Charlie is perfect and why there was no never any doubt in anyone’s mind that he, once conceived, would be born, and that whatever prior information Jim and I might have from prenatal genetic testing or other testing, we have always chosen to have him.

Always have, always will.

Why is the rate of autism in Somali children in Minnesota so high?

A few weeks ago, the Minnesota Post addressed this question. The August 24th Star-Tribune also reported on this “cluster of affected kids”; state and federal officials are investigating.

In Minneapolis, fears have been fueled by some puzzling statistics. Last year, Somali children made up just under 6 percent of the school population, but 17 percent of those in the early childhood autism programs (14 of 81 children). The numbers have been creeping up for several years, especially among young children.

“People are worried,” said Saeed Fahia, who heads a Somali community group. “Nobody remembers any autistic children in Somalia. I’m sure there must have been some, but there were not that many.”

The Star-Tribune also notes the “cultural stigma” of autism in Somail culture. One Somali-born women was “so alarmed by the number of Somali children in her son’s autism class that she started calling politicians, news organizations and state officials to call attention to the issue,” but still kept her son’s being autistic a “secret from relatives.”

“Not only is it high among us here, but we Somalis don’t accept this disorder,” said the woman, who asked not to be identified.

Before rushing to suspect “something about America” (or something in the lake water) as linked to autism, consider: A commenter who’s an autism researcher, lives in Minnesota, and is autistic made a number of observations about the rate of autism among Somali children; he notes that, according to the WHO, there are officially 16,000 cases of autism in Somalia (a rate of 1 in 2000), but no full-scale study has been conducted. It’s also of interest to consider a 2003 study by Gurney, et al., on Analysis of Prevalence Trends of Autism Spectrum Disorder in Minnesota .

Couple of weeks ago the Minnesota Post did an article on rates of autism in Somali children in Minneapolis, with the suggestion that “something” about being in the US was causing higher rates of autism. Today’s Raleigh News-Observer also reports on autism in the children of recent immigrants to the US, but with an emphasis on the additional difficulties of getting services for a disabled child when you’re new to a country, a culture, a language. It’s pointed out that the more “open-minded mentality” here can lead to immigrant parents to seek a diagnosis, services, and education for their children:

Esmeralda Garcia feels more supported and informed about autism in Charlotte than she ever felt in her native Mexico. When her 6-year-old daughter, Marianea, was diagnosed four years ago in Garcia’s hometown of San Luis Potosi, Garcia, 30, had never heard of autism.

After a year of treatments, Marianea hadn’t improved. Garcia decided to move back to Charlotte, where she had emigrated with her husband some years before, so Marianea could get better health care.

Garcia saw an ad for Boujlil’s group in a Spanish-language newspaper and called Boujlil, who took her to the doctor and later helped enroll Marianea in school.

My grandparents on both sides immigrated to the US from southern China at the beginning of the 20th century. None of their children had disabilities, but if they had, or if any of the families in the immigrant Chinese community had disabilities, it was not talked about and there were certainly no services, not at all. The Raleigh News-Observer highlights the work of a group, the World Alliance for Families and Children, which was founded by Mariame Boujlil, a native of Morocco who now lives in Charlotte and whose now 5-year-old son Zachary is autistic. The World Alliance for Families and Children helps families to navigate the US health care system, get diagnoses, figure out treatments, and also runs a summer school: Important work that makes a real difference.

Much happened over the past two weeks but I want most of all to think about Evan Kamida, who passed away on July 24, just a few days shy of his eighth birthday. Please keep his mother Vicki Forman and Evan’s family in your thoughts and prayers—-and to honor his memory, here’s a small and lovely thing to do: Please take a photo of flowers at a swingset and post it to this Flickr pool. Shannon Des Roches Rosa and Jennifer Graf Gronenberg have posted more information.

Thinking of Evan.

• Not a Team Player in the Office?—-Not Necessarily
  The difficulties that autistic individuals face in the workplace.
• Use of Restraints Increasing in Public Schools?
  Kids coming home with bruises on their wrists, arms, legs: That’s not supposed to happen in public school, and not at the hands of teachers—well, it does.
• Mouth or Eyes: How do you look at someone’s face?
  Researchers studied 42 parents of autistic children and found that some of the parents evaluated facial expressions in ways similar to autistic individuals.
• The Latest Players in the Vaccine Drama
  Hollywood meets science……
• The Perils of French Fries
  On a ubiquitous staple of American kids’ cuisine.
• 4-year-old shown the door at Georgia restaurant
  A Georgia mother and her daughters are kicked out of a Jackson restaurant because one daughter, 4-year-old Alyssa, who is autistic, was crying.
• Savage Language, To What End I Do Not Know
  Talk show host Michael Savage mouths off on autism and starts a media maelstrom.
• “He’s Just a Late Talker—He’ll Grow Out of It”
  Late talking child or child on the autism spectrum?
• About a “grossly misinformed actress” and a certain doctor
  Jenny McCarthy, a certain doctor, and……
• Back in Jersey Where There’s “Looming Dread of Autism”
  Has autism become this generation’s polio?
• Remembering BART, BlogHer, and Some Books
  Reflections on BlogHer and being in the Bay Area.
• A Little Autism Education for Michael Savage
  What Michael Savage needs to know.
• The R Word and Not So Nice Language
  Is it time to retire the word “retarded”?
• Here’s the Autistic Adults
  The Vancouver Sun doesn’t quite know what to say about autistic adults.
• 9 Years Ago Charlie Was Diagnosed
  9 years ago, we received Charlie’s formal diagnosis of autism.
• Rates of Autism in Somali Children in Minneapolis
  Why are first generation U.S.-born Somali-speaking children in Minneapolis schools disproportionately identified as having autism?
• Network Defends Dr. Savage
  Talk Radio Network has announced that it will not be firing Michael Savage in the wake of his incendiary comments about autism.
• False Controversy: Autism and Vaccines
  On science, medicine, doctors, scientists, and the mommy gambit.

Today’s MinnPost.com reports that “First generation U.S.-born Somali-speaking children in Minneapolis schools are disproportionately identified as having autism.” There are 15,000 to 40,000 Somalis living in Minnesota, a 2001 state health department study reports. According to the Minnesota Department of Education:

in the Minneapolis’ early childhood and kindergarten programs, more than 12 percent of the students with autism reported speaking Somali at home. According to Minneapolis school officials, more than 17 percent of the children in the district’s early childhood special education autism program are Somali speaking.

Almost 6 percent of the district’s total enrollment is made up of Somali-speaking students, and about 6 percent of the children in the district’s overall early childhood and kindergarten special education programs are Somali.

Anne Harrington, early childhood special education coordinator for the Minneapolis district, notes that it’s the “‘more severe forms of autism that we’re seeing in our Somali babies that are born here,’” and that more than a few families have two autistic children. She also notes that the Somali community is struggling to find health services and understand autism.

According to Huda Farah, a Somali advocate who collaborates with the health department and trains childcare providers who work with autistic Somali children, language barriers and a lack of understanding of the complex U.S. medical system are key reasons why many Somali parents don’t seek medical help for their autistic children.

Cultural barriers also impede: Unlike in the United States, children in Somalia aren’t taken to a doctor for developmental disorders.

It’s precisely the cultural issues—the understanding of autism in Somali culture and in Somalis who now reside in the US—that the MinnPost.com article needs to further address. A July 15th article in The Local, a Swedish newspaper written in English, is cited as describing “that country’s Somali population and its high prevalence of autism.” The Local article, though, is actually about a theory about a lack of vitamin D causing autism. Neither article considers how autism is understood, identified, or diagnosed in Somalia; both immediately invoke theories of environmental causes, leading David Kirby to make a number of speculations about autism in the children of immigrants to the US:

It would be very interesting, I believe, to look at autism rates in high and low immigration states. Not to implicate vaccines, but to find out if children of immigrants are more at risk than our native born population — and why.

And one suspects that his “and why” is not going to rush to take into account the numerous socio-cultural, economic, legal, language and other obstacles that immigrants face.

We were living in St. Paul when my son was diagnosed. I’m third-generation Chinese American, overly educated and a professor of Latin and Greek, all duly noted on the forms I filled out for the school district who evaluated Charlie. One of the first questions the Child Study Team asked:

“Is English the primary language spoken in the house?”

This is the final paragraph of an article in the July 6th Scotland on Sunday about 20-year-old Dale Gardner, who was severely autistic as a child, and his mother, Nuala Gardner.

His mother is bursting with pride. When she first found out about Dale, part of her grieving process was to wonder if it would have been better if he had never been born. “But just look,” she says, “at the son I’ve got now.”

I’ve always been so glad I had Charlie, to hold in my arms when he was little, on tough days and glorious ones; to walk side by side at Columbus Circle in Manhattan yesterday afternoon, en route to meeting Jim in his office.

• Associated Press Says “Mentally Retarded” Is Outdated Term
  The latest update of the Associated Press Stylebook says, no more using “mentally retarded” (”mentally disabled” is preferred).
• Autism is Global, Autism is Local
  About the Global Autism Project and some concerns—insurance in PA—closer to home.
• More Research on Mitochondrial Disorders?
  On reporting about a meeting last Sunday on mitochondrial disorders and vaccines (and autism).
• Mirror Neurons, Motor Ability, and Empathy
  And also imitation, which has been an essential skill for my son Charlie to learn.
• More Thoughts on Recovery After an Interview
  Reflecting on Charlie’s life so far after an interview for Loving Lampposts .
• Not a Nice Thing to Say
  A doctor says “‘If he was a dog you would put him down’”—what the????
• Lost For 4 Hours
  A minivan driver is lost for 4 hours taking an autistic child to summer camp—-I’d be queasy if this happened to Charlie.
• Why I Don’t Hold Charlie’s Hand All the Time Now (But Still Sometimes)
  And why it sure feels nice to hear him say “Hold my hand please!”
• The Meaning of Independence
  What is independence, anyways? Why not make more of our interdependence on each other?
• Watch Your Words When the Subject is Autism, and Vaccines
  And any suggestion of a link between them……
• First (and Big) Impressions
  A new study published in Current Biology suggests that what we “see”internally—in the mind’s eye—can directly influence our visual perception.

Autism is a global phenomenon: The Global Autism Project was started five years ago by Molly Ola Pinney of Dublin (NH), after she moved to Ghana to continue caring for a Ghanaian boy she’d met in Seattle while on assignment with the AmeriCorps. According to today’s Sentinel-Source:

“There were only 30 pediatricians and only one was diagnosing autism,” Pinney said. “The others believed the autistic were possessed. … Within months of coming to Ghana, I was being sought out by people with autistic family members. They said they were alone, that they needed help but didn’t know where to find it.”

After launching the Global Autism Project, Pinney partnered with Serway Quaynor, a Ghanaian who’d been teaching her autistic adult son at home because he had nowhere else to go.

In 1998, Quaynor founded the Autism Awareness Care & Training Centre, which filled in a huge gap in Ghana by providing training and educational services to help children with autism function in society.

I met Pinney a couple of years ago (we had both been asked to speak on a panel about autism following a drama festival on neurodiversity). Her Global Autism Project is an example of how, when it comes to assisting autistic individuals, one person’s efforts can make a big difference. We’ve found this out again and again through the many, many teachers, therapists, college students, and others who have spent time with Charlie and who he never forgets.

The Sentinel-Source notes that Pinney was “recently featured in a promotional video for Autism Speaks, the nation’s top private funder for autism research” and an organization that seems to be seeking to, indeed, be a sort of global autism organization, in additional to a national one. You may have heard of the recent disagreement/brouhaha between Autism Speaks and AutismLink, a Pennsylvania autism organization, as noted in a press release:

AutismLink, the largest autism advocacy organization in the State of Pennsylvania, is standing with Governor Edward G. Rendell and Speaker of the House Dennis M. O’Brien in their denouncement of the Senate Autism Bill. The Bill, HB1150, is scheduled for vote today. (The bill passed.) The bill requires insurance companies to cover up to $36,000 of autism-related treatment for individuals less than 21 years old, but was gutted of all useful language by the Senate’s Banking and Insurance Committee, headed byIndiana Senator Don White, a former insurance broker.

“This bill was carefully crafted to end insurance discrimination of children with autism in Pennsylvania,” said Cindy Waeltermann, President of AutismLink and parent of two children with autism. “Those who carefully crafted the bill understand the system inPennsylvania. Although the bill has been endorsed by Autism Speaks,Pennsylvania families of children with autism by and large reject the bill.”

“Make no mistake,” said AutismLink Executive Director and parent of a child with autism, Rick Bryant, “The Autism Speaks team working on this bill is comprised of individuals from New York, California and Maryland and they are completely ignoring the advice and information given to them from Pennsylvania advocates and/or clinicians.”

This particular disagreement points to something that might be noted about autism advocacy and organizations. There’s mission statements and goals, but—for me—autism is, when you get down to it, local. It’s about one person knocking on our door and maintaining the same compassion and composure to teach Charlie to build with legos or put on his socks. It’s about the clerk in the store who says “he sure likes his sushi” and smiles at Charlie, as I tried to pack too many groceries into one bag and hang onto my wallet. It’s about the email his teacher sent me exclaiming over the great time he had at a field trip to a beading shop: Charlie not only made his creation with “speed and accuracy” but “blew everyone away” with its beauty.

Yes, autism is all around the globe and many have needs everywhere, and all the more reason to listen as carefully as one can to what the locals are saying.

Very late on Monday, Charlie and I took a red eye flight back to New Jersey from San Francisco. He set his mouth, clutched my dad’s blue jacket to his chest and handed it back just as we got into the line for the security check. No crying or painful encounters with airport security personnel. Charlie grabbed a plastic bin as I told him and took off his shoes and put them and his backpack in it (I slowed us up, with a bag, a backpack, and a laptop). The plane was slightly delayed—storms on the East Coast—-and I decided that, though Charlie was years beyond the 4-year-old age limit for pre-boarding, that we would get on early, so he’d know, we’re going home, just like I said we would, just believe me…..

After a last-minute request for a drink of water, Charlie was yawning. I helped him put his seat back and then I heard it.

A soft meowing.

I had seen a passenger with a white cat in a carrier in the boarding area and he, and his feline charge, were apparently a few rows behind us. Charlie’s past, sometimes intense, fears of four-footed animals entered my mind and as quickly faded. The meows continued and Charlie, seatbelt fastened and an airplane blanket over his lap, fell soundly asleep.

I needed to sleep too—I had to be in Jersey City at 11am Tuesday morning—but I found myself glancing on and off at the in-flight movie, The Spiderwick Chronicles. I didn’t listen via my headphones; I could tell what the plot was after reading fantasy book after fantasy book after fantasy book (those are only a few titles) in my childhood. Children, often with one parent missing, arrive at mysterious old Victorian sort of house—one, younger, curious child finds a dusty old book with old-fashioned writing and pictures of fantastic beings, elves and goblins and all the rest.

Charlie doesn’t listen too long to these sorts of stories; I’ve been thinking his interests in stories and books are more aligned with those of Jim, a historian who prefers non-fiction, biographies, accounts of actual stuff that actually happened. I tried to close my eyes, but couldn’t resist opening them to see what was going on and watched enough to note there was a magic round glass that the main character learned to look through, and suddenly he could see so much more than the average human: He could see that what appeared to be an empty tree was populated with small winged beings, or that strange monstrous troll-creatures (the mythic, not the spamming, type) were dragging his brother across the grass. He could see a whole other world of beings that were there but unknown to the naked eye, until that eye was taught to see.

Sort of how, once you know what autism is, and how to look for autism, you start to see autistic persons everywhere. In old friends with endless record collections and a collection of their paintings in the basement;  who lived with their mothers until they died, and work a string of odd jobs (caddying, sexton for the local Episcopal church, lounge piano player, airport limo driver). You start to realize, your not so typical little boy is not the “only one” on the block or on the beach. You start to understand why the post office clerk never makes eye contact and almost goes to pieces when you fill out the label wrong; you stop feeling mad, you feel a deep patience. (Just to clarify: I do not mean to in anyway equate autistic persons with the types of beings—elves, fairies—-that are only visible to the eye thanks to the magic glass that the boy in The Spiderwick Chronicles finds.)

Until I knew Charlie’s diagnosis of autism, I did not—could not?—see autism and I often think that prior to Charlie’s diagnosis, my world was shades of gray, and now it’s got every color in their fullest glory. I thought back to those tough moments last Friday morning in the Newark airport, when I knew Charlie was crying and calling for his dad and expressing those deep feelings that it was once thought an autistic child did not have. To some, it looked like Charlie was being bad, annoying, and without disregard for another people. Frankly, I love him all the more for communicating what he felt, and for his love of others, and for how hard he was trying to stop crying and to stay in control of himself. Mr Ojugbuna, the father of an autistic girl, Wendy, says this in the June 16th All Africa.com:

“socially people see [autism] as a stigma, but I don’t. I have had occasions where I go out with her to supermarket, church and social gathering and you notice people looking at you in a particular way, but I don’t care because she is my daughter. I give her all my love and I display it publicly. I want her to know that she is one of the must loved children in the world. I think people react the way they do because they are not enlightened and instead of getting angry, I pity them because it can happen to anybody.”

Mr Ojugbuna continued, Children with autism or Down syndrome are part of the society. They are not mad as people think. Autism is confused with mental illness due to our culture. In the United Kingdom, you see people who are not physically endowed, as you and I, but they excel in art, sports and some vocational skill, because the society accepts them. I think people should be educated about it. Because autistic children and children with Down syndrome can contribute significantly to the society ,if only they are accepted. When we are at home for instance, we help her with her school work by showing her what to do and what behaviour is proper. Of course, like any other child she may go off the track but we help her to do the right things. She is very warm, pleasant and outspoken such that when she is not at home you miss her. I’m not supposed to say this as a parent, but sometimes I miss her more than the other children. When my friends come around everyone asks of Wendy. I think there is something glowing about her. I see her becoming someone great in future,” he said, beaming with smiles. “I place no limitations on her. She has shown enough traits to me and her mum, to make us believe she can get to great heights. For instance, she loves music. If you play any song on radio or on CD and ask who sang it, whether American or Nigerian, she will tell you the name of the artiste. How she knows the name of the artiste and their songs, I don’t know. So if she wants to take that line, I will encourage her all the way. Wendy to me, is one in a million and for me she is a normal child.” From this discussion with Mr Ojugbuna I saw the picture of a father who believes in his child and that was reflected in the behavior of Wendy [my emphasis].

(There’s discussion of the All Africa.com article over at Left Brain/Right Brain, too.)

Charlie slept for the whole transcontinental flight and was not awakened even when a flight attendant issued an urgent message: Would the passenger who brought on the cat wake up immediately, your cat is roaming the aisles. I could hear the cat’s soft purrs until she or he was found and brought back safe, and Charlie’s even breathing.

The plane had left late but landed on time. Charlie got up slowly, then—backpack gripped in his left hand—followed me to the baggage claim area and he hoisted it tightly all the way until Jim drove up in the black car and, with a big smile, Charlie got into the back seat and said “Dad!”

Just like the Unicorn said to Alice:

“‘if you’ll believe in me, I’ll believe in you. Is that a bargain?’”