Tracing History and Politics of Autism

We worked with John Donvan and Caren Zucker years ago for a piece on autism and love. They came to follow one of the individuals we support at our National Institute for People with Disabilities of New Jersey. 
In their book published this month, In a Different Key: The Story Of Autism, journalists John Donvan and Caren Zucker delve into the history of the good and bad intentions, sometimes wrong-headed science, and shifting definitions that can cloud our understanding of what has come to be called the autism spectrum.

In their Tuesday conversation with NPR's Robert Siegel, host of All Things Considered, Donvan and Zucker tell of a particularly dark period in the 1940s when psychiatrists blamed autistic behavior on "refrigerator mothers" — emotionally distant women who, supposedly, didn't love their children enough. "This was a very, very poisonous idea," says Donvan. And it wasn't the last flawed notion about autism's roots.

Opinion: Students Need More Options

My wife, Liz, and I have a 5-year-old son named Sam who, along with his little brother, Pete, is our pride and joy. Sam was diagnosed with autism-spectrum disorder at age 4. The symptoms of ASD vary but are characterized by social deficits and repetitive behavior. His doctor says he is high-functioning, which means that with the right schooling, therapies, teachers and family support Sam could be “mainstreamed” into a regular classroom with his peers in the future.But getting from here to there is going to take enormous effort, and our local public school has already shown an unwillingness to help. Sam is old enough to attend kindergarten in the fall, but after reading his progress reports and listening to his therapists, Liz and I agreed he was not ready to tackle the added challenges of kindergarten. His language skills are still delayed and he has sensory and social issues that could use another year of work.

Opinion: Why I Despise Autism Awareness Month

Thoughtful opinion piece by Kim Stagliano has authored a novel and two books on parenting daughters with autism. She is managing editor of Age of Autism. Anyone else feel this way? 

Today, you’ll be seeing a lot of blue: World monuments will be cast in blue lights, your co-workers will be wearing blue clothes, and companies will be hawking blue products. Why? April 2 is World

Autism Awareness Day, when advocacy group Autism Speaks “celebrates” its international Light It Up Blue Campaign. But while you’ll be seeing blue everywhere, I’ll be seeing RED. The feel-good frippery of Light It Up Blue cloaks an often debilitating disorder in an air of festivity, with balloons, sparkling lights and pep rallies. The campaign implies autism is a party, rather than a crisis. For families living with autism, reality is far more sober, and their needs extend far beyond “awareness.”

When Caregivers Need Healing

“This has happened before,” she tells herself. “It’s nowhere near as bad as before, and it will pass.”Robbie Pinter’s 21-year-old son, Nicholas, is upset again. He yells. He obsesses about something that can’t be changed. Even good news may throw him off.

Dr. Robbie Pinter and her
son, Nicholas.

So Dr. Pinter breathes deeply, as she was taught, focusing on each intake and release. She talks herself through the crisis, reminding herself that this is how Nicholas copes with his autism and bipolar disorder.

Lifetime Cost of Autism Tops $2 Million

U.S. and U.K. scientists have completed the most comprehensive analysis of the costs associated with supporting a child with an autism-spectrum disorder (ASD) over a lifetime and found that those whose ASD is linked with intellectual disability can accrue up to $2.4 million while those without intellectual disability require about $1.4 million in medical, nonmedical and indirect costs. And that’s on top of the average $241,000 that it takes to raise a child to age 18 in the U.S.

Busting Autism's Myths with a Camera

From across the pond.

Since her young son was diagnosed as autistic, Sara Dunn has been attempting to help "challenge the myths surrounding autism" with a camera.

The photographer has been documenting her experiences with her son and other families affected by autism through photography.Ms Dunn, 27, from Chester, stays with families for 48 hours to take images and wants to stage a public exhibition of her work, Admiring Autism.

Making Sense of Diagnostic Tools

As anyone who has struggled to get clear answers for their child knows, there is no single medical test to detect autism. And because autism spectrum disorders are so complex and varied, they often require a team of physicians or psychiatrists to diagnose them -- a process that can extend months or years after a parent first spots red flags.Since 2007, the American Academy of Pediatrics has called for all children to be screened for autism at 18 and 24 months, using tools such as the Modified Checklist of Autism in Toddlers, or "M-CHAT" -- a simple questionnaire that asks parents about their children's playtime behavior, responses to social cues and motor skills. The test has been studied for well over a decade and has been shown to be very effective in signaling which children should have further observation and evaluation.But, as the Academy itself states outright, none of the screening tools currently available are perfect, and newer tools are under development so that children can be diagnosed more efficiently, and with greater accuracy. 

The Boy Who Ran Away: In-Depth Look at Life and Death of Avonte Oquendo

The doctor told the mother not to worry, that the baby was only a little developmentally delayed. Some kids just do it on their own time, he said. So she brought him home and waited.

Vanessa Fontaine had the background, as a nurse and an experienced mother, to understand that something was different about Avonte. He was one year old and still not making eye contact. He’d started talking, saying “Mommy” and “Daddy,” but then just as suddenly he’d stopped saying anything at all. There were other symptoms, too. “He’d watch TV, but he wouldn’t play with toys,” she remembers. “He didn’t like any toy that I would buy him, no toy at all.”

Study: Autism Begins In the Womb

The symptoms of autism may not be obvious until a child is a toddler, but the disorder itself appears to begin well before birth.

Brain tissue taken from children who died and also happened to have autism revealed patches of disorganization in the cortex, a thin sheet of cells that's critical for learning and memory, researchers report in the New England Journal of Medicine. Tissue samples from children without autism didn't have those characteristic patches.

Don't Keep Sports Off Limits

Michael John Carley is the Founder of GRASP, and the author of "Asperger's From the Inside-Out" (Penguin/Perigee), "The Last Memoir of Asperger Syndrome" (TBD), and numerous articles. In 2000, he and one of his two sons were diagnosed with Asperger's Syndrome. 

When you grow up with any kind of developmental disability it means that you do not grow as everyone else does. Shut out of the rituals of your peers -- the "developmentally-appropriate" experiences others refer to -- you will grow in different, often unseen ways. We positive types like to mention that there are some areas where you might find yourself surprisingly ahead of your peers. But, as we all know, not only will the areas where we are behind get the most notice (as that is what others will more clearly see), being in any kind of minority makes life harder, not just "different."

For autism spectrum kids who are better able to navigate greater society, sports are one of those rituals. But unlike fellow proponents of "more athletics for spectrum kids," my concerns don't rest solely with the exercise benefit. In 10 years of running the world's largest membership organization for adults (GRASP), I saw inestimable damage because people had grown up terrified of competition. In some cases, with folks whose ages range from the 20s to the 80s, I even saw a commitment -- rather than a conditioning -- towards avoiding rivalry. They were so determined to avoid creating, or engaging in any kind of battle with their fellow humans that they wouldn't even utter the words, "I can do better," which, as we all know, is wherein we compete against ourselves.

Open Letter to Journalists on Eve of Autism Awareness Month

From Age of Autism's Media Editor Anne Dachel.

Dear Fellow Members of the Media: (That includes all of you at CBS, NBC, CNN, Forbes, New York Times, Chicago Trib, LA Times, et al.)

April is coming up and I wanted to say a few words about the month dedicated to autism awareness.  Many of us in the autism community are tired of stories about lighting the world up in blue and celebrating autism as if parents should be happy about a diagnosis.  We've endured years of feel-good coverage about awareness, fund-raising walks, and no explanation for the mystery of autism.  

Most of all, we want you to do your jobs. 

Study Puts Annual Cost of Care for Child with Autism at Over $17,000

Substantial costs come along with an autism diagnosis, researchers say in a new study that attempts to put a price tag on the care needed by children with the developmental disorder.When factoring expenses for health care, schooling, caregiving, therapy and similar family-coordinated services, a study published online Monday in the journal Pediatrics suggests that an autism diagnosis brings an annual cost of $17,081 per child.

Opinion: Do We Really Need Cure for Autism?

Does autism need to be cured? I am forever reading articles, mainly on American sites, that claim they have found a 'cure' for autism. These are observed when scrolling down my Twitter feed or conducting online autism research, I mainly look for interesting news stories and new interventions, ways in which I can help my child. I use the word 'help' rather than 'cure' as this word sits uneasy with me.

A Visit with Santa Minus Fanfare

There was little fanfare at this meeting with Santa Claus.

There was no music playing, no lights twinkling and, perhaps most importantly, no crowds gathering. But the sober staging belied the excitement felt by the parents who brought their children, hoping this visit with St. Nick would be a successful one.

Autistic Young Adults Less Likely to Have Jobs or Live Independently, Studies Find

Young adults with autism are less likely to find work or live on their own than their peers with other kinds of disabilities, two new studies show.
The studies detailed the fates of a national sample of 20-somethings who had received special-education services in high school.

Defining 'Play' for Children with Autism

When free to choose, kids with autism pick games that engage their senses and avoid games that ask them to pretend, a new study finds.Experts said the results are not surprising. It's known, for instance, that when children do not show an interest in pretend play, such as "feeding" a doll, by about age 2, that is a potential sign of an autism spectrum disorder.

Family Finds 'Light at End of Tunnel' at Michigan Autism Center

PORTAGE, MI – It was a year ago when Allan Macaulay left a family camping trip early after another one of his son’s violent outbursts, only to sit on Hiawatha Behavioral Health’s crisis hotline for an hour.

His family of five, then living in Engadine in the Upper Peninsula, was falling apart.

John Anthony with his parents
Allan and Jessica Macaulay. 

“I called the crisis line because I want to know where the director lived so I could bring him to her house,” said Macaulay, 43. “I was so frustrated ... The aides were trying their best, but they didn’t have training. We wanted some professional help or someone who knew more than we did.”

John Anthony, 11, was diagnosed with severe autism when he was about 3 years old, and the help the family had been receiving just wasn't enough.

Former NFL Star Curt Warner Understands Challenges of Autism

UNIVERSITY PARK, Pa.— Legendary Penn State running back Curt Warner and his wife struggle with their twin sons’ autism diagnosis.

Curt Warner with his wife, Ana,
and oldest son, Jonathan.

One son started a fire that burned down their house in 2008. They’ve felt discrimination among other parents and teachers. And now that the twins are 19, the Warners are facing the reality that their sons aren’t going to do the typical young adult things, such as go to college.

Read more here: http://www.centredaily.com/2013/08/02/3716872/warners-relate-challenges-of-autism.html#storylink=cpy

Read more here: http://www.centredaily.com/2013/08/02/3716872/warners-relate-challenges-of-autism.html#storylink=cpOne son started a fire that burned down their house in 2008. They’ve felt discrimination among other parents and teachers. And now that the twins are 19, the Warners are facing the reality that their sons aren’t going to do the typical young adult things, such as go to college.

Read more here: http://www.centredaily.com/2013/08/02/3716872/warners-relate-challenges-of-autism.html#storylink=cpy

Opinion: Will Government Restrict Autism Housing Options?

From Age of Autism, post by Nancy Bernotaitis, parent of three children, her youngest, 15, diagnosed on the autism spectrum.  Nancy has been involved in the autism community for over 13 years serving as president of the Autism Society of America-Dayton Chapter, Goodwill/Easter Seals Assistive Technology Specialist, and webinar moderator for Moms Fighting Autism.  She is the Executive Director of Good Works Farm, Inc., a future farm community for adults with autism. 

As is typical of our government, a ruling meant to protect Americans with disabilities (Olmstead v. L.C. 1999) is being misconstrued to the detriment of this population.  In Olmstead v. L.C., a ruling requires states to “eliminate unnecessary segregation of persons with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate for their needs.” 

In 2009, President Obama issued a proclamation launching the “Year of Community Living” and directed his Administration to redouble enforcement efforts.

The U.S. Senate committee on Health, Education, Labor, & Pensions (HELP) lead by Senator Tom Harkin (D-IA) is charged with this enforcement. 

In May of 2013, Jeff Rosen, Chairperson of the National Council on Disability (NCD), an independent federal agency charged with advising Congress and the executive branch on disability policy, wrote a letter to Shaun Donovan, Secretary of the U.S. Department of Housing and Urban Development (HUD), interpreted the ruling to mean that individuals with disabilities move from provider-owned housing into their own homes or scattered-site housing and apartments, and urged HUD to issue “guidance to recipients of HUD funds on meeting the obligations of Olmstead and the integration mandate of the ADA.”  In his letter, Mr. Rosen seeks to define community living as “utilizing a definition that excludes gated communities, segregated farmsteads, clusters of group homes, settings that restrict personal choice and control, and other settings with the characteristics of an institution.”

A Mother's Anguish Over Autism

SAN JOSE, Calif. – Jill Escher, a dark-haired dynamo of smarts and stamina, was gently stopping her son, Jonny, 14, from ripping up the mail. He had just emptied spice bottles on the table to make finger paints.Upstairs, her daughter, Sophie, 7, was sending out incomprehensible cries. It could mean that Sophie had opened a box of crayons, eaten some and rubbed the rest into the carpet, or smeared a tube of toothpaste on the mirror. And while Escher tried to calm Sophie, Jonny could be tossing his iPad over the fence, tearing all the ivories off the piano, chewing the furniture, or wandering out into traffic.

For Escher, the anguish of autism is doubled. Both Jonny and Sophie have been diagnosed with autism, the fast-growing category of neurological disease afflicting one in every 88 U.S. children. The Escher children's intellectual development is stalled at an early pre-school level, and they need constant care and protection.For years, Escher and her husband, Christopher, agonized over what could have gone wrong. Why would two of their three children wind up autistic, defying the odds? Was it their genes? Their environment? Their food? The couple tried to hunt down any health problems in their lineage but found none. A glass of wine while pregnant? Paint fumes? Pollution from freeways?