An Educator Offers Insights into Families of Kids with Autism

Barbara Firestone is asking some good questions: "What does it mean for a person with an autism spectrum disorder to lead a dignified life? How do parents help their children navigate in a world that isn't always sensitive to individuals with differences?"

Firestone, the author of a new book called "Autism Heroes," is also offering some insights, based on her listening to and learning from a group of 38 families about their experiences coping with with growing up, going to school, participating (or not) in the community—essentially a collection of concerns that sounds like many of the things that Autism Bulletin readers are thinking about. Besides dignity, other chapters in the book discuss themes like hope, opportunity and love.

I emphasize "sounds like" because the book from Jessica Kingsley Publishers just came out and I have only read brief excerpts. Barbara Firestone is making an author tour on the east coast starting November 11 in New York City with stops in New Jersey, Massachusetts, Pennsylvania and Virginia (more information at the author's book site).

For parents and families of kids with autism, there are so many books coming out that it is challenging to keep up. So why focus attention on this one? Well, the author herself is intriguing: Firestone is president and CEO of The Help Group, a non-profit organization based near Los Angeles in Sherman Oaks, Calif., which runs six day schools for students with autism. She also serves on the California Legislative Blue Ribbon Commission on Autism which recently came out with an important set of recommendations for improving the state's autism services, education and awareness. (For more coverage, see this article.) Someone who is involved in both educating students with autism—a key component to helping individuals grow and develop—who also takes the time to get involved in an important public policy mission offers parents seeking answers and insights the chance to learn something.

Below is a brief excerpt. Firestone asks some good questions, and hints that in some respects, conditions for people with autism are improving:

What does it mean to lead a dignified life? How do parents help their children navigate in a world that isn't always sensitive to individuals with differences?

Families recount how insensitive, uninformed, and distancing the community can be. When children, who otherwise look normal, have disruptive or unusual behavioral problems in public, strangers can be very unforgiving. Frequently, onlookers attribute the child's behavioral problems to ineffective parenting or to the child being a "bad seed." They often stand to the side rather than help, their faces full of judgment rather than empathy.

Some parents have told me that, although it's difficult for them to admit, they wished at times that if their child had to be disabled, that the disability had taken a more socially acceptable form. Some parents make the decision to fully participate in activities outside the home no matter what the cost; others modify what they will attempt; while others retreat, saying that it's easier to avoid being ostracized. And of late, parents are beginning to tell me that they sense a greater understanding in the community— a more "How can I help?" rather than "What kind of parent are you and what kind of child do you have?"

History of Autism: An Interesting Timeline

Jayne Lytel, a writer and parent of a child who has been mainstreamed in school, has created an interesting timeline with highlights of the history of autism, from the first recorded use of the term in 1911 to the present day. It's an interesting and easy to read presentation of information you may have picked up in other places that was meant for academic researchers. You can view it here.

Jayne is scheduled to publish a book,
"Act Early Against Autism," in March 2008, which recounts what she has learned as the parent of a child who was diagnosed with an autism spectrum disorder; according to her website, the book will include chapters on therapies her son found beneficial and insights into the financial demands that an autism diagnosis can place on a family.

Unconfirmed Diagnosis in Virginia Tech Tragedy; Related Notes on Autism in Korea

In the landslide of media coverage of the Virginia Tech tragedy in which a gunman murdered 32 people and himself on April 16, there was one line that stood out to parents of kids with autism spectrum disorders: the killer in the case, Seung-hui Cho, had been diagnosed with autism, according to a great aunt.

The Associated Press reported that Cho's great aunt said the family had received the diagnosis sometime after emigrating to the United States in 1992. The news service added in a follow-up report that the great aunt "said the family was told in the U.S. that Cho suffered from autism -- but no records show such a diagnosis." (You can read the dispatches here, via The Age newspaper in Australia, and the later story here via Washingtonpost.com.) A long article in the April 22 edition of The New York Times entitled "Before Deadly Rage, a Life Consumed By a Troubling Silence," made much of Cho's lack of speech, his non-existent or extremely awkward social interactions, and a court's declaration of his mental illness, but the report did not mention autism. (If you have seen more definitive information about this case, please post a comment at the end of this article.)

So what are we to make of this?

The facts of the case are important. One could deduce a diagnosis from assembled pieces of media coverage and compare them to the Diagnostic and Statistical Manual of Mental Disorders (the American Psychiatric Association reference which describes autism spectrum diagnosis criteria). But without medical records or a doctor's testimony one would have an incomplete picture of Cho's case.

That uncertainty does nothing for people like parents who already are worried about the negative associations that an autism connection would have on their children. In this community, there are persistent concerns about a negative stigma. There's already an ongoing fight to gain support from society at large, already a struggle for understanding and acceptance. That's why AutismLink.com, an advocacy group and service center in Pittsburgh, issued a statement urging the public not to blame Cho's actions on autism. It is why, in the wake of a murder at a Boston area high school in January, the Asperger's Association of New England urged the public to avoid generating a sweeping negative stereotype about people with Asperger's (for background on that case, see here.)

In an effort to understand this dynamic swirling around the Virginia Tech tragedy, I wrote to Roy Richard Grinker, professor of anthropology and the human sciences at the George Washington University. He has a daughter with autism and he has studied how different societies -- including South Korea -- are dealing with autism. He published Unstrange Minds: Remapping the World of Autism (New York: Basic Books, 2007) and created an associated website at Unstrange.com.

I am going to post Professor Grinker's note in full below, which emphasizes that he is not a doctor and so is not qualified to talk about medical diagnoses. But as a matter of the societies in which Cho grew up, Grinker notes that: "It is unlikely that he would have been diagnosed in Korea. In the U.S. it is also unlikely, if only because Korean-Americans are on the whole very reluctant to seek mental health care (since it is just so stigmatizing). Doctors I've interviewed (including Korean-American doctors) tell me that by the time a Korean person gets to a mental health professional that person may be acutely mentally ill."

Why is that unlikely? Professor Grinker's note below explains more. It's long, but if you read it you get to understand how the ever-changing societies in which we live influence how that society views a disability like autism. Here's the note:

In my experiences in Korea, South Africa, and India, autism, when defined adequately, has been less stigmatizing than the other categories that are more commonly used, like mental retardation, possession by a demon, or, in India, paagol (Hindi), "mad." But illness categories are meaningful only if there is something one can do with them; thus, for many adults today in the U.S. who require public assistance it makes little sense to carry an autism diagnosis in states where services to adults with autism are provided only under the category of mental retardation. Pediatricians and psychiatrists in India, for example, put it quite simply: “What is the benefit to my patients of an autism diagnosis?” Since autism is not well understood in India, and there are few government services for the category of “autism,” they see little point in making the diagnosis. Instead, they use a category everyone knows – mental retardation – even if it is inaccurate. As one physician in New Delhi told me, “The treatments in India for someone with mental retardation and autism are identical.”

In Korea the situation is a bit more complicated. Autism is less stigmatizing than mental retardation but for autistic kids without mental retardation, autism is more stigmatizing for the family than the preferred diagnosis, Reactive Attachment Disorder (which, in cases where there is no demonstrable pathological care-taking environment, can be construed as a version of the refrigerator mother). Here is why autism is more difficult a category for the family as a whole.

In Korea, children American clinicians might diagnose with autism are often diagnosed with reactive attachment disorder (RAD). RAD is sometimes described pejoratively as “lack of love” (aejong kyolpip), a term that, for Koreans, conjures images of orphans craving affection and care. In Korea, RAD is thought to be a condition mimicking autism, caused by a mother’s absence of attachment to her son (this is the Korean version of the “refrigerator mother”). In fact, some clinicians in Korea even prefer to drop the word “reactive,” because, from their perspective, that word identifies the pathology in the child rather than the parent. By calling RAD simply “attachment disorder” (aechak changae), the blame can be more clearly placed on the mother.

RAD is a diagnosis that many parents prefer, even though it directly indicts the mother as a pathological caretaker. First, unlike autism, RAD or lack of love can be ameliorated by giving love; it’s not a permanent condition. An autism diagnosis, however, is seen as a statement that your child has no future. Autism, at least in Korea, is widely considered to be untreatable and many parents who try various therapies, like speech therapy, vitamin regimens, or herbal medicines, give up after a while if their child is not cured. The Seoul-based psychiatrist Dong-Ho Song, who is one of the best trained and busiest child psychiatrists in Seoul, and who is an important member of our Autism Speaks-funded project, had a patient who had been diagnosed with RAD first at the age 18 months and then subsequently by several other doctors throughout his early childhood. He was almost eleven when he came to Dr. Song and received his first diagnosis of autism.

Second, RAD or lack of love is not a genetic condition so it doesn’t impugn the family and harm family members’ marriage prospects in the same way a genetic disease might. This fear of autism as a genetic disorder is found in India and other countries as well, where parents fear that they will be marginalized from the social networks they feel they are entitled to. Thus, while RAD may stigmatize the mother, autism stigmatizes the whole family, past, present, and future.

Third, and perhaps most importantly, the [RAD] diagnosis makes sense to Koreans. Korea has been undergoing rapid social change for the last fifty years, emerging from the total devastation of the Korean War to becoming one of the richest countries in the world. Conservatism and resistance always accompany social change, and women make easy targets. Mothers are entering the workforce in unparalleled numbers, and Korean sociologists and child health experts are responding. They argue that women no longer know how to care for children. They leave their children with grandmothers or nannies and thus cannot bond with their children. Psychologists and psychiatrists thus ask: “Is it any wonder, then, that the children of working mothers have language and social deficits?”

The result is that many Korean parents are unwilling to put their child at risk for being diagnosed “incorrectly” with autism when they are already comfortable with their child’s existing diagnosis of RAD.

Now, as for the shooter at VTECH, Cho Seung-Hui, first, I am not a clinician, as you know. But second, as far as I know from reading the press, there is not much information on him as a child. It is unlikely he would have been diagnosed in Korea. In the U.S. it is also unlikely, if only because Korean-Americans are on the whole very reluctant to seek mental health care (since it is just so stigmatizing). Doctors I've interviewed (including Korean-American doctors) tell me that by the time someone gets to a mental health professional that person may be acutely mentally ill. Again, I am not a clinician, but I suppose it's possible that some clinician somewhere could have at one time used the word autistic as an adjective to refer to -- remember again that I am not a clinician -- the flat affect and introverted personality of someone who would grow up to have schizophrenia. Remember that in the DSM I and DSM II "autism" was mentioned in the criteria for childhood onset schizophrenia. You can see the criteria on my website at unstrange.com

DSM refers to the Diagnostic and Statistical Manual of Mental Disorders from the American Psychiatric Association. Its criteria for diagnosing autism originated with a childhood schizophrenia and has evolved over the years. You can see the link to the criteria to which Professor Grinker refers by clicking here.

Mother Asks: What About Autistic Teens?

Susan Senator, who has a 17-year-old son with a severe form of autism, published an interesting op-ed piece in The Washington Post on March 18 entitled, "In Autism, Hope At Any Age." In the piece, she describes her frustration with the lack autism services and supports available to teens and adults. Read the piece at The Post's website by clicking here.

Senator is both an advocate for better autism services and the author of the book "Making Peace With Autism," which describes her experience as a parent discovering about autism and learning by many trials and errors how to make a difference in her son's life -- and the lives of her family which include two other sons. See more about the book, which my family has found helpful, by clicking here.

In her op-ed piece, Senator strikes an exciting and hopeful note by recounting the recent event of her son Nat's asking his first question ("where's my pajamas?"). It's a moment understandable for its import -- asking questions is a key building block for interacting with people, for social interactions. But she also expresses frustration with where to take her energy for her autistic teenager. She writes:

Like the parents of young autistic children, I have hopes for my son -- though others may not. I just know -- at least I hope -- that if we strike while the iron is hot we might end up making a huge difference in his future, his independence. We are not alone. The many families of older autistic children have needs, too. We want support such as home-based therapy and job training for our children. We want housing for them. We want to know that they will get the right kind of care when they are adults. And we want educational strategies for them, because often autistic people bloom late, as my boy has.

Read the whole article; it's well-written.

"Strange Son" Recalls Struggle of Autistic Boy Who Gains Words

The New York Times praises Portia Iverson's new book "Strange Son" as an honest, unvarnished account of the struggles she and her family have gone through to help her son, Dov, achieve the ability to communicate. You can read the review here.

For a nonverbal boy, this achievement meant that after years of silence, Dov could reveal his ability to read, could say how he felt about his younger brother, could express desires for certain toys. What makes the account resonate, says reviewer Abigail Zuger, is Iverson's refusal to sugarcoat the ongoing challenges: "Although teenage Dov can now communicate effectively and learn at his grade level, he remains saddled with profound emotional, neurological and behavioral abnormalities" -- a point made in contrast to many media messages that suggest parents should look for miraculous recoveries from autism, Zuger writes.

Iverson also describes her experience bringing from Bangalore, India to southern California Soma Mukhopadhyay and her autistic son Tito, who has learned to write poetry and communicate very well -- as long as his mother is nearby. The book recounts how Soma's style of teaching her son helped Dov.

Iverson probably could write a second book about her experience as an activist and advocate. She co-founded the advocacy group Cure Autism Now (which recently merged with Autism Speaks) and also co-founded the Autism Genetic Resource Exchange, a gene bank for researchers.

To read more about the book, visit StrangeSon.com. The Times posted an excerpt on its website which you can find here (it's a PDF file).

February's Additions to Autism Bulletin Sidebar

Recent additions to Autism Bulletin's sidebar:

U.S. Centers for Disease Control, Feb. 2007 report on prevalence of autism spectrum disorders based on statistics in 14 states, PDF file. This is a state-by-state rundown of the latest study that suggests 1 in 150 children studied have an autism spectrum disorder.

A link to Leo Kanner's 1943 paper, "Autistic Disturbances of Affective Contact," from Pathology. (Courtesy of Neurodiversity.com website.)

The website for "Unstrange Minds: Remapping the World of Autism," by anthropologist Roy Richard Grinker.

P.S. Note to subscribers: I noticed that the poll posted earlier in the week did not get translated to the information from this blog automatically sent to you. If you are interested in seeing it and adding your vote, please see "What Do You Tell E.R. Staff About Your Child's Autism?" by clicking here.

Scientists Raise Voices Against Autism Parents' Vaccinophobia

A series of recent articles shows that scientists and public health advocates are finding their voice in advocating that all children get vaccinated against contagious diseases in spite of the fears of some parents that the shots are dangerous and could cause autism. Not all of the articles mention the fear wrought by one British scientist's theory published in 1998, and later disputed, that the mercury-containing preservative thimerosal in the some vaccines suggested a link between the vaccine and autism, but this "Wakefield study" is a part of the subtext.

"Fact: no link of vaccine, autism" is the headline to an op-ed in The Philadelphia Inquirer this week by Arthur Caplan, professor of bioethics at the University of Pennsylvania, and co-director of the Ethics and Vaccines Project there. Caplan calls the autism-vaccine theory a myth and writes:

This urban legend has had very real - and terrible - consequences. It has led, and continues to lead, many parents to avoid getting their kids and themselves vaccinated against life-threatening diseases. The failure to vaccinate has caused many preventable deaths and avoidable hospitalizations from measles, whooping cough, diphtheria, flu, hepatitis and meningitis. And fear of vaccines puts each one of us at risk that we, our children or grandchildren will become part of a deadly outbreak triggered by someone whose parents avoided getting their child vaccinated for fear of autism.

Recent research on many fronts in medicine and science has nailed the coffin shut on the mercury-in-vaccines-causes-autism hypothesis. The connection is just not there. Perhaps the key fact, which has garnered little attention, is that thimerosal has been removed from vaccines in this and other countries for many years, with no obvious impact on the incidence of autism.

You can read Caplan's article here. It appeared Feb. 6, just two days after The New York Times Book Review assessed the new book "Vaccine: The Controversial Story of Medicine's Greatest Lifesaver," by Arthur Allen. In this review, David Oshinsky, the author of the Pulitzer Prize-winning history work "Polio: An American Story," says that Allen has written a "splendid book" that aptly captures the risk-reward calculus that has always been part of the administration of vaccines since Edward Jenner successfully immunized a child against smallpox in 1796 England.

Allen's book recounts the religious, economic and other arguments against the smallpox vaccine (Napoleon loved it for his troops), the book reviewer says; current anti-vaccination sentiments have their roots in "the general fallout from catastrophes like Watergate and Vietnam, which undermined institutional authority across the board. ... The public's portrait of a medical researcher had turned from the selfless and independent [Jonas] Salk working on behalf of children to that of a lab-coated lackey from a drug giant conspiring to hide the dangers of products that are slickly marketed and wildly overpriced." The reviewer concludes:

To a large extent, says Allen, this antivaccination impulse is fueled by an ignorance of the past. Vaccines have done their job so well that most parents today are blissfully unaware of the diseases their children are being inoculated against. The end result is a culture that has become increasingly risk-averse regarding vaccination because people have greater trouble grasping the reward.

The problem appears to be growing. As more children go unvaccinated in the United States, there has been a rise in vaccine-preventable diseases. Meanwhile, fewer pharmaceutical companies are now producing vaccines, citing the high cost of testing, diminishing markets and a fear of litigation. For Allen, a reversal of these trends will require something long overdue: a frank national discussion about the risks and benefits of vaccination. His splendid book is a smart place to begin.

Autism is not mentioned in the review of this book, but we know it's on the author's mind. Last month, Arthur Allen penned one of several stories that picked up a thread in the book "Unstrange Minds," by anthropologist Roy Richard Grinker, to argue against the idea of an autism epidemic. You can read more about that issue here.

Scientists are doing more than writing histories like Allen and citing studies to argue in favor of the public health benefits of vaccines like Caplan. A team of researchers from the Stanford University Medical School just published a study in the February issue of Nature Reviews Neuroscience on the way the media covered news of scientific research and discoveries about autism. The researchers said they found a disconnect, as Stanford reports on its website:

While 41 percent of research funding and published scientific papers on autism dealt with brain and behavior research, only 11 percent of newspaper stories in the United States, United Kingdom and Canada dealt with those issues. Instead, 48 percent of the media coverage dealt with environmental causes of autism, particularly the childhood MMR vaccine for measles, mumps and rubella that was once linked with autism in a widely refuted study. Only 13 percent of published research was about environmental triggers of autism.

You can read an abstract of the study, "Interacting and paradoxical forces in neuroscience and society," by Judy Illes, Joachim Hallmayer and Jennifer Singh here, and the Stanford press release here.

The researchers suggest is that it's difficult to get the message out when the media doesn't prioritize coverage of issues the same way that scientists do. So it's incumbent on people like Caplan and Allen to bang their drums of scientific and public health advocacy. Illes, Hallmayer and Singh might say that they can't count on the media to do it for them.

(One interesting aside about the Stanford paper: it notes that media coverage about the 1998 paper by Wakefield eventually led to studies that refuted his findings and cited the safety of vaccines. And as Caplan notes in his newspaper column, it also led to the removal of thimerosal from vaccines. If it were not for the media coverage of the autism-vaccine controversy, one could ask, would these things have occurred? Would the drop in vaccinations be even more precipitous?)

Still, even with all the scientific research surrounding this issue, it can be difficult to take one's child to the doctor's office for a shot. Kristina Chew, who is a PhD and blogs about her life as the mother of an autistic son, wrote about this difficulty in her blog Autism Vox on Feb. 6:

Vaccine” and “autism” had become for me—have become in the public psyche—not merely linked. These two words, which have nothing intrinsically to do with each other, have become equated, and because of coincidence, of a correlation that seems to contain a clue to causation: An 18-month-old child receives her or his immunizations. An 18-month-old child is noticed to not be playing in varied ways, or interacting, or speaking. The parents know they have “done everything” to ensure their child’s health and development, have followed the advice of the pediatrician exactingly, and then some, so it must be some external agent, some mysterious force, that has caused this terrible change in a child.

I think, that is, it is possible to understand why so many parents believe in a vaccine-autism link. What I am trying still to understand, is how to dispute such a link; as Professor Caplan’s op-ed suggests, appeals to the evidence of science have yet to be effective.

So earlier in her son's life, she demurred from having him vaccinated. Later, when it came time recently to enroll her son in a new school, she took him for his vaccine shots.

Media Pick Up "Unstrange Minds" As Hook to Debunk Cries of "Autism Epidemic"

Both Time and the online magazine Slate have picked up the main thesis in Roy Richard Grinker's new book, "Unstrange Minds," which as Slate's writer puts it, "makes the case that the rise in autism diagnosis is nothing more than an epidemic of discovery."

It's important to note these articles, along with a U.S. News and World Report piece highlighted here last week, because as more media outlets focus on this book, Grinker's well-regarded work will become grist for arguments in the policy debates over funding for research, and questions about services in schools and other facilities, that eventually affect people with autism and their families. (You can find today's Slate piece, "The Autism Numbers, Why there's no epidemic" here. The Time article, "What Autism Epidemic?" is available here.) This is the kind of media attention that threatens to take the public's focus away from pursuing results -- What causes autism? What can we do about it? -- and instead shines a light on semantics and debates about definitions: What is an epidemic, anyway? Do we need to worry about something that is not "an epidemic"?

The Slate piece, by Arthur Allen, who has a new book about the history of vaccines coming out this month, says people such as quarterback Doug Flutie, Rep. Dan Burton and NBC Chairman Bob Wright (a founder of Autism Speaks) have cried "autism epidemic" as a way to get more research funds. The point the writer makes is that people respond to hyped up language; they rally for funds, pass laws, demand services, boycott immunizations, and so on. The problem, he says, is that Grinker's research shows that there is no evidence of an epidemic. Time's article, by Claudia Wallis, is more succinct in bullet-pointing Grinker's research on why there are more autism cases in the U.S.: broader medical definitions, increased special-education reporting requirements, less social stigma associated with the diagnosis, "financial incentives" to get Medicaid without financial need, and the "relabeling" of kids once called mentally retarded or learning disabled as autistic.

There's nothing wrong with these discussions, of course, unless you buy into the underlying assumption that the Slate and Time writers make: that without a popular belief that the rising incidence of autism cases represent an "epidemic" there would be less urgency about the issue. There would be fewer efforts to raise money, fund research, pass legislation, increase supports for people on the autism spectrum and efforts to help their families. There would be less advocacy for all these things. Maybe there would be no Combating Autism Act.

I look forward to reading "Unstrange Minds" to gain more understanding about the history of autism diagnoses and how different cultures treat their children. (You can find out more about the book, and read an excerpt, by visiting the author's site here.) I also want to understand better the context in which reports like these from Time and Slate pick up Grinker's work as newsworthy. Because I would expect more of these reports to be published.

Anthropologist Casts Light on Austim Views Around the World

Roy Richard Grinker arrives at his research into autism from two vantage points: first as the father of 15-year-old Isabel, who has autism. Second, from his background as an anthropologist and professor at George Washington University. And what he tells U.S. News and World Report is that the society into which an autistic child is born influences greatly whether the child will be diagnosed and have access to important services.

Grinker explains to U.S. News some of the social scientific research he has done for his new book Unstrange Minds: Remapping the World of Autism (Basic Books). You can read the magazine interview from the January 15 issue, by clicking here.

Grinker says he found stories of desperate circumstances, such as families in South Korea who hide children and keep them hidden from neighbors, afraid that an autism diagnosis will affect the whole family's future, such as the marriage prospects of siblings, and the market value of their apartments. He also found families in India who educated themselves, became experts and found ways to help their kids make progress. (Other travels took him to Africa, Appalachia and the National Institutes of Mental Health, according to the book blurb quoted on Amazon.com.)

These research experiences inform Grinker's view that countries like the United States are doing a better job counting autism cases, and so the numbers of diagnoses are rising; it's as if our society's rising ability to confront developmental disabilities has brought on the labeling of more cases.

Grinker's own child is doing well based on his comments -- she played the cello recently in a recent high school concert, for example -- and his latest research appears to have given him some personal solace. He tells the magazine:

There are some people who would say that the use of the term autistic to refer to such a wide range of people impoverishes the term. But speaking as a father, the expansion of the term is wonderful, because my daughter is not treated as an alien who should be institutionalized. If you go to India or South Korea and see how many people with autism are hidden away, you see how far we've come.

Professor Grinker's web page at George Washington University he recently received a $120,000 grant from the National Alliance for Autism Research (now part of Autism Speaks) to conduct the first ever epidemiological study of autism in Korea.

In Praise of Nick Hornby

Nick Hornby is a British writer mainly known in the U.S. for movies based on his books. Films like High Fidelity, About A Boy and Fever Pitch have made him a very successful author. It wasn't until a recent controversy in British politics, in which a leading politician made an insensitive joke about someone having autism, that I learned Hornby is the father of a son with autism whose family helped start a special school for kids on the autism spectrum in London called TreeHouse. During that controversy, Hornby spoke out against the insensitive remarks the politician made; it's not the first time he's done this.

Hornby's introduction to "Speaking With The Angel," a short story collection he edited, dedicated to his son Danny, and for which he donates part of the proceeds to TreeHouse and other autism programs, is one of the more powerful pieces I've read about what it means to be the parent of an autistic child, and just how important education programs and teachers are. You can read an excerpt from the introduction by clicking here. Here's another:

How do you educate severely autistic children? How do you teach those, who, for the most part, have no language, and no particular compulsion to acquire it, who are born without the need to explore the world, who would rather spin round and round in a circle, or do the same jigsaw over and over again, than play games with their peers, who won't make eye contact, or copy, and who fight bitterly (and sometimes literally, with nails and teeth and small fists) for the right to remain sealed in their own world? The answer is that you teach them everything, and the absolute necessity of this first-principles approach makes all other forms of education, the approaches that involve reading and writing and all that, look quite frivolous. Danny has to be shown how to copy, how to look, how to make word-shapes with his mouth, how to play with toys, how to draw, how to have fun, how to live and be, effectively, and TreeHouse utilizes a system that makes these elementary skills possible. Danny's education began with him learning how to bang on a table when prompted to do so, a skill that took him weeks to master. What's the point of that? The point of that is hidden in the phrase "when prompted to do so": only when a way has been found to penetrate the autist's world can any progress can be made, and now Danny listens. He can't understand everything he hears, but at least there is now a sense that for some parts of the day-- and for most of the school day -- he occupies the same world as his teachers and his peers. ...

All parents of autistic children know the terrible cycle of guilt and apathy that comes with the territory: our kids are capable of entertaining themselves for hours at a time if we let them (and sometimes we do, because we're tired, and maybe despondent), but we know that the entertainment of choice -- spinning round and round, lining things up, watching the same videos over and over again -- is not healthy or productive. But few of us have the energy to do what Danny's teachers do. We cannot create scores of different activities each and every day, all of them designed to equip our children to cope better with the lives they are living now, and will live in the future.

Temple Grandin's Voice

Temple Grandin, the best-selling author and animal expert who has autism, broadcast an essay this week as part of National Public Radio's "This I Believe" series of personal statements that guide peoples' lives. Listen to Grandin's essay, "Seeing in Beautiful, Precise Pictures," by clicking here.

If you are just learning about Grandin, you are likely to find her message positive and hopeful (even as her voice sounds a bit flat in her delivery). She explains that she assembles thoughts using sensory impressions -- sights, sounds and feelings from her memory -- rather than abstract concepts like most people. "I believe that doing practical things can make the world a better place," she announces. "And one of the features of being autistic is that I'm good at synthesizing lots of information and creating systems out of it."

In this long conversation Grandin had in 2005 with Terry Gross of NPR's "Fresh Air," the story gets more interesting. Yes, she has a high-functioning spot on the autism spectrum, but she's overcome a number of challenges our children face: emotional estrangement, educational hurdles, anxiety, discomfort with unfamiliar situations and sensations. She's been taking anti-depressants for two decades, and attributes her successful life and career to the calming effects of the medication.

By inviting Grandin to speak about her views on life, NPR puts her in the position of speaking for an entire population of people with autism. That might seem unfair, but it's a position she has cultivated in her books, including Animals in Translation and Thinking in Pictures. And Grandin's "This I Believe" piece and her interview with Terry Gross make her sound like an inspiring figure. She told Gross:

"Another thing about being autistic, there's no magic turning point. It's a gradual emergence. You just keep learning more and more and more. It's like you never really grow up. I didn't feel like I was a really grown up adult until I was 45."