Monday, April 30, 2012

Study Finds Smoking-Autism Linking

MILWAUKEE -- Children of women who smoked during pregnancy were more likely to have high-functioning autism, such as Asperger's Disorder, U.S. researchers say.
Lead author Amy Kalkbrenner, assistant professor in the University of Wisconsin-Milwaukee's Joseph J. Zilber School of Public Health, said those with Asperger's Disorder display significant difficulties in social interaction and repetitive patterns of behavior and interests, but they have linguistic ability.


Divorce and Autism: Avoidable or Inevitable

From Huffington Post's Elaine Hall.

My first marriage was in trouble long before we adopted our 23-month-old son, Neal, from a Russian orphanage. That Neal was diagnosed with autism shortly before his 3rd birthday, only put Miracle-Gro on an already fragile family system.
Sure, the stresses of autism were undeniable: Neal didn't sleep (which, of course, meant our sleep was compromised). He spun around in circles, opened and closed cabinet doors, pulled pictures off walls and could tantrum for hours. Autism isn't pretty

Billy Joel Praises Child's 'Piano Man' Performance

It turns out Billy Joel has seen Ethan Walmark’s “Piano Man” performance, which went viral over the weekend, and the recording artist is impressed. Joel issued the following statement through a spokesperson Sunday: “I think I like his intro to “Piano Man” better than mine. And this kid plays with a lot more energy than me. Maybe he could teach me a few things.”

'Firm Is Better Off with Him Than Without Him'

Kevin Gibson, right, talks with
Martin Geissler, founding member of
law firm Muncy, Geissler, Olds & Lowe
in Fairfax.
FAIRFAX, Va. -- On any given work week in the quiet halls of the Muncy, Geissler, Olds & Lowe intellectual property law firm in Fairfax, 26-year-old Kevin Gibson carries stacks of stuffed manila folders in and out of a file room containing some 7,000 active cases.
To most high school students, it might be just another boring summer job, but for Gibson, the work is defying a medical prognosis.

Bullying and Children with Special Needs

 Note from YAI: Must apologize for delay in posting news today. We're hosting our International Conference this week. This story ties so well into what Carol Gray, one of our keynote presenters was discussing this morning. Here is a link to our looking forward conference site -- where you can read and listen to what people from the field are saying and thinking about.

Special-needs youth with chronic medical conditions or developmental disabilities are at risk for anxiety and depression if they're excluded, ignored or bullied by other young people, a new small study says.
It included 109 youngsters, ages 8 to 17, who were recruited during routine visits to a U.S. children's hospital. The patients and their parents completed questionnaires that screen for symptoms of anxiety and depression, and the youngsters also completed a questionnaire that asked them about bullying or exclusion by their peers.

Sunday, April 29, 2012

Mom Demands a Voice in Daughter's Education

TAMPA -- For months, Veleria Fabiszak has pleaded with the Hillsborough County School Board to help her daughter, Chelsea.
The 20-year-old high school student has Rett syndrome, a neurological disorder that causes seizures and developmental delays.
Sometimes, Fabiszak shares a heart-wrenching story about how Chelsea's disease has stolen her ability to walk and talk, but not her desire to learn. Lately, the discussion has dissolved into a showdown between Fabiszak and district administrators.

After Months of Preparation, Child with Autism Has Open-Heart Surgery

GILBERT, Australia -- Preparing a child for surgery is difficult enough. Imagine preparing an autistic Gilbert 3-year-old who can't talk -- for open-heart surgery.
Tristan Pastrano this week underwent the surgery to correct his atrial septal defect, commonly caused by a hole between the two upper chambers in the heart. The hole can close up on its own in infants, but surgery is in order if it still exists at 2 or 3 years old.
While the surgery is a common procedure, there were complexities in Tristan's case.

Verbal Abuse of Student Prompts Reform Calls

CHERRY HILL, N.J. -- When harsh words flew in a classroom for autistic children here, the school employees who spoke them likely thought no one in authority would ever hear.
“Shut up,” shouted one staffer, unaware that a digital recorder was hidden in the pocket of 10-year-old Akian Chaifetz.
“Go ahead and scream because guess what? You’re going to get nothing until your mouth is shut.”
“Oh Akian, you are a bastard.”
But after the boy’s father, Stuart Chaifetz, released excerpts of the tape in an online video last week, millions of people learned what was said at the Horace Mann Elementary School.
Now, educators and others are trying to figure out what the incident means.

Saturday, April 28, 2012

Respite Care on Chopping Block

Interesting item from Kaiser Health News.

Family caregivers provide 80 percent of long-term care needs in the U.S., but many need time away from that job so they can continue to care for their loved ones. Respite can provide short-term relief through several options, including a paid home care worker or providing temporary stays for patients at a residential care facility or adult day care center. Some families pick up the cost of such care out-of-pocket, but many must rely on state and community programs.
However, as states face tough budget decisions, such programs are increasingly on the chopping block.

A Theater Class Where All Are Able

Children with and without development
disabilities at the Paper Mill Playhouse
MILLBURN, N.J. —   “I’m a little scared,” confessed one of the children in the black-box theater at the Paper Mill Playhouse here on a recent Friday.
The admission, made by a 10-year-old latecomer in a Lion King T-shirt who occasionally buried his head in his mother’s lap, hardly fazed the drama teacher, Leslie Fanelli, 54, of New Providence.
“Just relax,” she said, momentarily pausing in her demonstration of improvisation, which involved a lot of arm-waving and singing. “Then maybe you’ll feel like joining in.”

Challenges and Rewards of Autism

Add caption
IOWA CITY -- Eight-year-old Tommy Giel has another word for what makes him unique.
“He calls it ‘awesome’ instead of ‘autism,’” said his mother, Marie. “He asks me, ‘Why do I have awesome?’ I say, ‘You have autism; you look at things differently; you act differently. It’s not wrong; it’s just different.’”

Friday, April 27, 2012

Young Pianist with Autism Becomes Online Star

You must watch this video -- it's fantastic!!! Can't wait to hear more from Ethan.
A six-year-old autistic boy from the United States is becoming an online star for his stirring piano rendition of Billy Joel's hit song 'Piano Man'.
Posted online yesterday, Ethan Walmark's rendition of 'Piano Man' has drawn thousands upon thousands of views.
The Connecticut boy first attracted attention for his musical talent at the age of five, when he began playing the piano after years of his father singing to him.

Students with Autism Prepare for Life After High School

TOWNSHEND, Vt. -- Before Lora Barrows' son received his diagnosis of autism spectrum disorder, the family's life was filled with confusion, frustration and uncertainty.
Barrows' son, Ben Davis, now 17, stopped talking at about 18 months, and over the next few months Barrows noticed her son withdrawing, and becoming less responsive and advanced at a time when he should have been learning and growing.
It would take another two years before a specialist finally determined that Ben had an autism spectrum disorder.

Thursday, April 26, 2012

Parents' Journey to Autism Diagnosis

By Amy Markoff Johnson on Huffington Post.

Some parents have baby books documenting the early years of their children's lives. My husband and I have manila file folders with labels like "Developmental Delays: Tests and Evaluations," "Speech Therapy Research" and "Early Intervention IFSP." These were the keepsakes we carefully preserved, our own special needs version of bronzed baby shoes: enough medical evaluations, referrals, notes and diagnostic information to fill half a file drawer. But rather than encasing the memory of a baby's first faltering steps, they are the record of a two-year-long journey stumbling toward an autism diagnosis.
Near the front of the drawer, in a folder labeled "Developmental Delays: Notes," is a sheet of paper with a list of words printed in black ballpoint pen: Cookie (ka), Stick (ka), Fish (ka), Car (ka), Dark (ka), Light (ka), Bunny (buh), Book (buh), Banana (buh)... The list of words goes on, a handful of mysterious single-syllables in parentheses next to each one. These are the words my son could say when we first began to worry enough to start taking notes, along with his pronunciation of each.

Autism and the Hypothetical Child

From Huffingtonn Post's Todd Drezner.

Given how many autistic people there are in the world, it's odd how much of the conversation about autism revolves around children who don't exist. The most common such child is the one who is "indistinguishable from his peers." This is the child who will supposedly emerge after successful therapies or treatments for autism leave the child essentially "normal."
This hypothetical normal child is closely related to another, younger one--the 1- or 2-year-old who was typically developing before the signs of autism became apparent. These two types of hypothetical children are linked by the assumption that their autism obscures their "real" selves. The hope for parents is that if the autism can somehow be removed, the real child will re-emerge.

Defying the Odds

Hal and Lisa in their apartment.
LAWRENCE, Kan. -- Hal Schultz and Lisa Barcus sit patiently in their apartment. Hal has a big smile on his face as he answers every question with ease, jumping at the chance to elaborate on a story that comes to mind. Lisa sits across from him, reserved and shy. When I ask her a question, Hal encourages her to answer by gently saying, “You’ve got this one honey.” As Hal speaks with pride about how they met, Lisa sits back in her chair, carefully listening as he explains how their love blossomed.
Although Lisa and Hal’s love story is comparable to any couple, something sets them apart. Lisa, 31, was born with Down syndrome, a genetic disorder that affects the body and brain’s normal development, while Hal, 36, was born with the congenital disorder cerebral palsy, which impacts how the brain and nervous system function.

Wednesday, April 25, 2012

Legislation Calls for Cameras in Group Homes

ALBANY, N.Y. -- A bill was reintroduced Wednesday that would require the installation of surveillance cameras at all entrances and exits of state-run group homes.The measure would require facilities run by the state Office of People with Developmental Disabilities to install and operate surveillance cameras on the premises to curtail criminal activity. The bill is sponsored by Assemblywoman Aileen Gunther, D-Forestburgh, Sullivan County, and Sen. David Carlucci, D-Rockland County.

Autism Around Us: Before Commenting, Try Walking in Our Shoes

EDITOR'S NOTE: The following is a copy of a letter sent to a Boston radio station on which a topic of conversation was related to children on “leashes.” In response to the exchange, the mother of an autistic child writes, “Most of us need them because we are good parents ... Hopefully if you feel the way this man did, I can change your perspective a little.”

Jimmy Harrington
I don’t usually write emails to radio stations, in fact I think this is the first time that I have done so. I also try not to let what I hear on the radio bother me. But this morning I did hear something and it just wouldn’t be right if I didn’t comment on it.
I am referring to one of the listeners’ comment about parents with kids on leashes and that they should be able to control their children without them.

Editorial: KanCare Reprieve Is Only First Step

It’s good news that an agreement apparently has been reached to delay coverage of Kansans with developmental disabilities under KanCare, the state’s new managed care plan. Perhaps the delay will give members of the Brownback administration time to truly consider and take actions to address the concerns of the families and care providers of this fragile population.

Opinion: Time to Re-Engage on Autism Epidemic

From The Hill blog, an item by Rep. Dan Burton (R-IN), who has chaired the House Committee on Oversight and Government Reform from 1997-2002.

On March 30, 2012, the Centers for Disease Control and Prevention (CDC) released their latest figures on the number of autistic kids in America. The numbers are sobering. Thirty years ago it was estimated that autism affected only 1 out of every 10,000 individuals. The latest CDC figures put the number at 1 in 88 American children (one in 54 boys); a 550 percent jump in cases since 2000. We are literally in the midst of a nationwide epidemic.

A Dad Fights Back for His Son with Autism

I confess, I hesitated before posting this piece. I do believe there are two sides to every story. I also don't usually post or watch 17 minutes video clips, but this definitely caught my interest. This is a sad commentary that a parent felt it was necessary to wire his son.

CHERRY HILL, N.J. -- With the statistics that nearly 13 million children suffer in schools and their community every year, we know that bullying happens to children frequently. But a recent NPR story discussed a recent survey, which found that nearly two-thirds of children with autism spectrum disorders have been bullied at some point. And it found that these kids are three times as likely as typical kids to have been bullied in the past month.

Aging Out: 'Like Falling Off a Cliff'

Sad but powerful story focusing on the lack of adult services. It's not just Michigan. All states need to address this and the numbers demonstrate the need.

TROY, Mich. -- Nick Gammicchia knows exactly what he's going to do in the future.
Nick Gammicchia uses a driver
simulator at a driving school.
"I'm going to Hollywood to help out movie producers, storyboard artists," Gammicchia said.
He already has drawn several storyboards and even sent a storyboard and screenplay to director Steven Spielberg.
"He's got big dreams," his mother, Carolyn Gammicchia, said with a smile.

Tuesday, April 24, 2012

Grandin on CDC Stats: Relief and Concern

In the last few weeks, new autism figures have created widespread controversy among American parents. In early April,  the CDC released its latest, shocking report on the disorder, which showed a massive uptick in the number of diagnoses — according to the numbers, one in 88 children and one in 54 boys are now on the autism spectrum. That’s an astonishing 78 percent increase since 2002. In the weeks since, pundits and doctors have spent a lot of time debating what these changes actually mean: Are they due to increased detection, loosened definitions of autism or are we in the middle of a genuine upsurge in autism among American children? As Dr. Thomas Frieden, the director of the CDC, told reporters, this change may “entirely the result of better detection. We don’t know whether or not that is the case.”
For Temple Grandin, the country’s most high-profile autistic person, this news is a source of both relief and concern.

Evidence-Based Autism Drugs May Be Biased

NEW YORK -- Doctors' belief that certain antidepressants can help to treat repetitive behaviors in kids with autism may be based on incomplete information, according to a new review of published and unpublished research
The drugs, which include popular selective serotonin reuptake inhibitors (SSRIs), are sometimes used to treat repetitive behaviors in people with obsessive-compulsive disorder (OCD).

Study: Why Children with Autism Are Bullied More

Despite the growing awareness, bullying is still common in schools these days. Some kids are bullied and some bully others. But, as a new study finds, kids with autism spectrum disorder (ASD) may have an even harder time with bullying, being many times more likely than their neurotypical siblings to have experienced it in their lifetimes. Even more disturbing, autistic kids may be intentionally triggered into having meltdowns by bullies who know how to push the right buttons.
The new study, from Kennedy Krieger’s Interactive Autism Network, surveyed families with autistic and non-autistic siblings from all over the country, asking about their experience with bullying in the past and present.

Three Generations of Autism

In our family, we have now experienced 3 generations of autism related disorders. Three generations have tried to figure out why their child, brother, sister, niece, or grandchild seemed to miss things that came naturally to other children their age. Three generations have struggled to connect with those children, worked with a shifting knowledge base and resources, and shared the frustrations and joys that come with special needs parenting.

The current generation is the luckiest, both in terms of resources and in being the most mildly impacted. There is so much hope.

Opinion: America's False Autism Epidemic

Post by Dr. Allen Frances, now a professor emeritus at Duke University’s department of psychology, chaired the DSM IV task force.

The apparent epidemic of autism is in fact the latest instance of the fads that litter the history of psychiatry.
We have a strong urge to find labels for disturbing behaviors; naming things gives us an (often false) feeling that we control them. So, time and again, an obscure diagnosis suddenly comes out of nowhere to achieve great popularity. It seems temporarily to explain a lot of previously confusing behavior — but then suddenly and mysteriously returns to obscurity.

Fairfax County Wrestles with Budget Trade-Offs

Elena Escota brings a human touch
to Fairfax County budget cuts.
FAIRFAX, Va. -- Lisa Arlt Escoto is not a political activist. But she felt so strongly about a government program that provided therapy for her daughter that she had to speak out.
So, on a day when nearly 70 speakers signed up to address the Fairfax County Board of Supervisors, Escoto was No. 37.
With daughter Elena, 6, at her side, Escoto asked that the supervisors increase funding for the Infant and Toddler Connection program, a federally created, locally managed program that helps children who have intellectual and developmental disabilities.

Limits and Possibilities

Post by Christine Cangiano, MS, is a counselor for families raising children with special needs and is actively involved in the special needs community in Northwest Indiana.

As with any child, it is important for me to set limits on my son's behavior while encouraging him to do his best.
Sam Cangiano
Just because he has Down syndrome doesn't mean he shouldn't be taught appropriate social skills and be able to wonder about the possibilities of his future. It is never okay for me to say, "My son can't do that because he has Down syndrome." Children with special needs are capable of so much and more.

Obesity Study Focuses on Group Home Residents

PHILADELPHIA -- For people with developmental disabilities, particularly those who live in a community group home, the prevalence of obesity can be significantly higher than in the general population. That’s why researchers from Temple’s Center for Obesity Research (CORE), together with United Cerebral Palsy of Central Pennsylvania (UCP Central PA), are exploring whether simple education focusing on healthy nutrition can aid these residents in losing weight.

Monday, April 23, 2012

When Autism Hits Home and Shatters Dreams

Powerful piece by a mother from Staten Island, N.Y.

STATEN ISLAND, N.Y. -- Our life may not be quite like yours. We are the Marks — Aaron and Jacqueline — parents of the Jacob, Dylan, and Tyler Marks. Our boys have autism. Autism has touched many families, but ours is different as our 10-year-old triplets have all been diagnosed with autism. When we learned that we were having triplets, we knew that our lives would be different from other families. Although, we could never have imagined just how different

Study Identifies Genes Tied to Autism

A new approach to investigating hard-to-find chromosomal abnormalities has identified 33 genes associated with autism and related disorders, 22 for the first time.
 Several of these genes also appear to be altered in different ways in individuals with psychiatric disorders such as schizophrenia, symptoms of which may begin in adolescence or adulthood. Results of the study by a multi-institutional research team will appear in the April 27 issue of Cell and have been released online.
"By sequencing the genomes of a group of children with neurodevelopmental abnormalities, including autism, who were also known to have abnormal chromosomes, we identified the precise points where the DNA strands are disrupted and segments exchanged within or between chromosomes. As a result, we were able to discover a series of genes that have a strong individual impact on these disorders," says James Gusella, PhD, director of the Massachusetts General Hospital Center for Human Genetic Research (MGH CHGR) and senior author of the Cell paper. "We also found that many of these genes play a role in diverse clinical situations -- from severe intellectual disability to adult-onset schizophrenia -- leading to the conclusion that these genes are very sensitive to even subtle perturbations."

Documentary Tells a Story of Courage

EUGENE, Ore. -- The main reason the Lane County District Attorney’s Office was able to prosecute three young men who assaulted Riley Campbell behind a Eugene shopping center on May 9, 2007, is because of Campbell’s grand jury testimony.
That would not be remarkable in a typical criminal case, in which the victim is often a key witness.
But Riley, now 35, is developmentally disabled and autistic, and communicating is not exactly his strong point.
He is, however, a whiz with facts, reads piles of novels and comprehends the world around him. But he has difficulty expressing himself, especially when distressed.

N.J. Aims to Build Better System of Care

New Jersey is looking to extend the concept of Patient-Centered Medical Homes (PCMH) to serve the developmentally disabled, which includes individuals with Down's syndrome and autism.
The coordinated care offered by a PCMH should be a natural asset for this vulnerable population, which is typically served by numerous professionals, from speech and physical therapists to psychiatrists and cardiologists.
Now the Arc of New Jersey and other organizations serving the developmentally disabled are looking to formalize their efforts at care coordination by getting recognized as PCMHs by national standards-setting bodies whose goal is improving quality and patient outcomes.

Sunday, April 22, 2012

Special Ed Changes and the Impact on Children

Special education as you knew it 50 years ago — or even 15 years ago — is long gone.
Over the past few decades, schools in Florida and across the nation have gradually begun "mainstreaming" students with disabilities into regular classrooms.
And — with the ushering in of new state rules that put most disabled children in the general education curriculum — we're about to see more and more mainstreaming.

Finding Their Inner Artist

Cassandra Clark, left, paints
a spool cap with help from
Janice Cashel.
TOLEDO, Calif. -- Walk into the Shared Lives Studio across from Fifth Third Field in downtown Toledo and you’ll be greeted by colorful dragonflies, funky coffee mugs, eclectic jewelry, striking photography, and original paintings — both whimsical and serious.
You can also see the artists at work — drawing, painting, and creating as music plays in the background.
The scene is much the same at the aptly named Kan Du Studio on South Main Street in downtown Findlay, where artists such as Taryn Bregel find inspiration and a market for their artwork.

Editorial: Kansas Ignores People with Disabilities

Kansas is allowing the plight of its disabled citizens to fester like a neglected bedsore.
Whereas four years ago all physically disabled Kansans who met income guidelines received services to help them remain in their homes and recover from strokes and other debilitating conditions, more than 3,500 people are now on a waiting list.
The number of developmentally disabled Kansans waiting for service such as in-home care and vocational opportunities is around 4,000.
If there is a plan for whittling down the lists, no one seems to know what it is.

Read more here:

Candidate Has Personal Reason to Run

Elizabeth Emken and her son, Alex.
DANVILLE, Calif. -- Elizabeth Emken lives on a leafy cul-de-sac in Danville with her husband of 26 years, their two daughters, their English springer spaniel, and their son, Alex.
"What's your birthday?" Alex asked. I gave him the date. He thought for an instant and put it into context that has meaning to him: " 'Mickey Mouse Club, Circus Day.' 'Up a Tree.' 'Davy Crockett, King of the Wild Frontier.' "
They're all Walt Disney productions, vintage 1955, the year I was born. Done with me, he asked two other visitors for the dates of their birth. "Old Yeller," he said of one. "Sign of Zorro," he said of the other.
He is why Elizabeth Emken has embarked on a quixotic campaign to unseat U.S. Sen. Dianne Feinstein. Many of Emken's positions come from the Republican playbook, and that places her at odds with other parents who similarly are enmeshed in the issue. On this point, they agree: "We're not addressing autism as the public health emergency it is."

Read more here:

Read more here:

Kennedy Center Provides Sensory Friendly Theater

SILVER SPRING, Md. -- For young people with autism, attending a live theater performance can be all but impossible. There are dozens of obstacles, which vary depending on each individual's challenges.
Managing the darkness, lines, loud and unexpected sounds, an unfamiliar environment, pressure to behave in the same manner as the rest of theater-going public, and any number of other societal requirements can be overwhelming.

Friday, April 20, 2012

Why Should a Disability Limit High School Choices?

Just like thousands of other students across New York City, I spent the fall of my eighth grade year preparing for the Specialized High School Admissions Test.
The test score determines whether a student is admitted to one of eight specialized high schools. Students prepare for this test in various ways; I chose to use a thick purple study guide that was filled with tips and practice tests.
When test day finally arrived, I gathered an abundance of pencils and headed downtown on the No. 4 train to Stuyvesant High School with my family. My anxiety began to build.

Changes to Medicaid Enrollment Changes Cut Care for Children with Special Needs

Physical therapist Carol Collica,
of Pediatric Services of America,
stretches Mackenzie Williams.
AUGUSTA, Ga. -- Five tiny fingers unfurled from a tight fist. Then, 23-month-old Mackenzie Williams rotated her shoulders and stretched her arms into the air.
Mackenzie needed a physical therapist to perform the exercises vital to her health and growth because she has a condition that causes developmental delays, reduced muscle tones and seizures.
The loving persistence of her mother, Morcy Morrell, ensures that Mackenzie receives daily therapy sessions and specialized care at Pediatric Services of America, a physician-prescribed extended-care center for medically fragile children and infants in Grovetown.
Other children aren’t receiving such care after changes were made to Medicaid enrollment.

Christie Plans to Expand Job Opportunities for New Jersey Residents with Disabilities

 Gov. Chris Christie announces
new initiative.
NEWARK, N.J. -- Gov. Chris Christie is taking action to expand job opportunities for New Jersey residents with developmental disabilities.
New Jersey is the 14th state to adopt the "Employment First" initiative that encourages employers to hire people with disabilities.

Teen's Winning Battle with Autism Inspires Others

Liam and Shelly Hendrix
BATON ROUGE, La. -- Like most 16-year-olds, Liam doesn't mind spending some time on the couch watching TV. He  also loves learning about sea creatures. I asked him, "What's your favorite sea mammal?" "Dolphins. " Liam is a poster child for how far a child who has been diagnosed with autism can come. He loves to cook.  Like many 16-year-olds, Liam has a job at McDonalds. Just like when he's cooking at home, it requires him to interact and perform specific tasks.

Virtual World Helps Individiuals with Autism Adjust to the Real World

Marcus Morris
BILLINGS, Mont. -- Autism affects on in 54 boys . . . and one out of every 254 girls.
The Centers for Disease Control says autism spectrum disorders are a group of developmental disabilities that can cause significant social, communication and behavioral challenges.
A new organization, Guardian Spirit, will soon start to help autism patients.
The group's executive Marcus Morris has autism and designed a program for Guardian Spirit's virtual world on Second Light.

Opinion: Maryland Again Fails Autism Community

Commentary from The Baltimore Sun by Ian Paregol, the executive director of Community Services for Autistic Adults and Children (, a Montgomery County-based nonprofit that operates an Intensive Early Intervention program for ages 18 months to 7 years, two non-public schools, 52 community residences for children and adults and a supported employment program for adults.

BALTIMORE -- This week, Michigan became the 30th state to require insurance coverage for autism therapies. Meanwhile, here in Maryland, the General Assembly has for the fourth consecutive year failed families of children diagnosed with autism spectrum disorders — one of our most significant national health emergencies.
Autism is a complex neurological disorder that typically impacts an individual throughout his or her lifetime. It is found in all ethnic, racial and social groups, affecting a person's ability to communicate and relate to others. Perhaps most disconcerting, the prevalence of autism is growing, up 78 percent over the last decade

Thursday, April 19, 2012

Family Urges Pennsylvania to Increase Funding

Brenda McCarthy with her
brother, Robbie, left, and son
Justin Shaffer.
LERAYSVILLE, Pa. -- Justin Shaffer is a tall, strong boy. He wears a nice class ring and will graduate from high school next year. His life is just starting.
But Justin and his family don't know what the future holds. The young man has intellectual challenges and attends special education classes at Northeast Bradford. A few years ago, Justin could have been confident government programs would help him after graduation. Today, he can't.
And Justin isn't alone.

The Voice for an Entire Community

Carly Fleischmann and her
father Arthur Fleschmann.

Carly Fleischmann's parents knew something was off about their daughter almost immediately after she was born.
She looked a little different than her twin sister and she wasn't reaching the same milestones, such as flipping over, sitting up or crawling.
She would eventually reach those goals, but there was one hurdle she couldn't overcome: learning to talk.
While she still can't communicate verbally she has become the voice for an entire community, and her new book, "Carly's Voice: Breaking Through Autism" (Touchstone), which she helped write alongside her father, Arthur Fleischmann, helps explain their journey.

Autism Coverage Signed into Law in Michigan

LANSING, Mich. -- With Gov. Rick Snyder out of the country, Michigan's Lt. Gov. signed a bill he had a strong hand in pushing through the Legislature.
The Michigan Public Radio Network's Rick Pluta reports on the signing of the autism coverage bill:

Few Answers in California Abuse Probe

A memorial to Van Ingraham in his
brother Larry Ingraham's home.
Fairview Developmental Center in Costa Mesa, Calif., is a sprawling facility of offices, residential buildings and therapy rooms set between a noisy boulevard and a golf course.
Some 400 people with developmental disabilities live at Fairview. And while minor scratches and bruises are not uncommon for these patients, over the years, the center has seen scores of serious injuries and even deaths.
Fairview is one of five state-run developmental centers in California — homes for people with developmental disabilities who are unable to care for themselves.
An investigation by member station KQED and the nonprofit group California Watch has uncovered patterns of abuse at a number of these institutions, including Fairview.

Intelligence Insults Should Insult Our Intelligence

Came across a Raise the Hammer, a website run by a group of Hamilton, Ontario, citizens who believe in their city's potential and are willing to get involved in making the city a more vibrant, livable, and attractive place to live and work. 

Moron. Idiot. Imbecile. Feebleminded.
No, I'm not quoting a Python skit. I'm listing some clinical classifications, no longer in use, except as socially acceptable descriptors of individuals with whom we may disagree, or whose expertise we doubt.
As in, "That's retarded."
Socially acceptable? That depends. If you're a comedy host for the CBC (Clash of Comedy website in Canada), apparently it is.

Wednesday, April 18, 2012

Kansas May File Medicaid Waiver Application Soon

, Kans. — The waiver application needed for Gov. Sam Brownback's proposed Medicaid makeover is nearly complete and could be filed with federal officials before the month is up, Brownback administration officials said yesterday.
Still unclear, an administration source said, was whether public hearings on the waiver application would be required in order to satisfy new federal regulations governing so-called Medicaid 1115 waiver applications.

After Clash with State, Son with Autism Finally Allowed to Move Out of Parents' Home

Cindy Burke and her son Casey
 unpack personal belongings in
 Casey's new bedroom in a group home.
BANGOR, Maine — A Hermon couple who clashed with the state over moving their autistic son into an assisted-living facility finally has an empty nest.
Gary and Cindy Burke spent this week lugging boxes to The Getchell Agency in Bangor, their 24-year-old son Casey’s new home. The move marks the end of months of frustration in the couple’s dealings with the Department of Health and Human Services and the beginning of a home life free of Casey’s increasingly violent outbursts.
“Casey left home this morning and we were both pretty emotional because we know he’s not coming home tonight,” Gary said Wednesday. “We know it’s the right thing to do, we know it’s right for him and for us, but it’s hard to let go of 25 years of 24/7 care.”

Pleading for Restoring Human Service Funds

ALEXANDRIA, Va. -- After three years of deep budget cuts and declining revenue, Fairfax County is showing signs of fiscal equilibrium as property values and revenues begin a slow uphill climb.
But human service agencies in the county are still feeling pinched by three years of cumulative cuts to their budgets, shrinking state and federal dollars, and increased demand on services.

Administration on Community Living Formed to Support Seniors with Disabilities

A doctor makes a house call.
WASHINGTON, D.C. -- The U.S. Department of Health & Human Services (HHS) announced Monday that it has established a new Administration on Community Living under HHS, which will be dedicated to “enhancing and improving the broad range of supports that individuals with disabilities and seniors may need to live with respect and dignity as full members of their communities” — rather than in nursing homes or other institutions.

Group Home Raises Concerns

This home on Salisbury Street
will be razed.
This story is just a sad reflection that the public's view of individuals with disabilities really hasn't changed at all. Read the comments when you link to the story. It's time people start seeing beyond disability and embrace diversity.

WORCESTER, Mass. --  A Brockton-based human services agency intends to operate a residential program for people with developmental disabilities at a Salisbury Street property where the existing home will be razed and replaced with a new building.

Autism, Parents and Teachers: Bridging the Communication Gap autism advocate blogger Laura Shumaker touches another critical issue.

I was talking to a group of teachers last week, something I do frequently, about my experience raising a child with autism. My favorite part of these talks is the Q and A. “You can ask me anything,” I say, “and I will answer to the best of my ability.”
I get a lot of juicy questions, but there is one that I am asked most frequently:
I could do a better job if I could communicate more with parents. How can I get them to talk to me?
I flash back to the year that I was that parent, and how his teacher bridged the communication gap.

Tuesday, April 17, 2012

Autism Demands Attention in the Emergency Dept.

Add caption

When a child with autism arrives at the emergency department, the approach to care should be as individualized as the treatment itself.
The ED itself is almost a caricature of everything that can tip the delicate behavioral balance for children on the autism spectrum: bright lights, loud noises, and scurrying strangers who want to get close with dangerous-looking implements. Combine that sensory onslaught with the pain of an injury or illness, and the result can be a bomb that threatens the child’s optimal care at least, and the safety of staff at worst.

Taking Nothing for Granted with Autism

Watching a child take his first steps is one of the biggest milestones for a parent.
Reed Williamson
He was a month shy of his third birthday, and the family had spent months in autism evaluations that Reed wouldn't participate in.

On Love and Autism: The Couple Speaks Up

In mid-March, we announced the latest installment of our Reading Club, on “Navigating Love and Autism” by Amy Harmon. While we’ve addressed love and intimacy before, and offered readers the opportunity to chat with a Reading Club article’s writer, this time, the young couple who are the subject of the article kicked off our comments.
Jack Robison and Kirsten Lindsmith are both living with Asperger’s syndrome. The article, which appeared on the front page of The New York Times in December, is a candid account of their struggles with the disorder, with social situations and even with each other.
In having them open the discussion, and holding readers to the rules of the Reading Club, a great conversation developed.

College Life for Some Who Never Thought Possible

Maurice Olayinka, 21, works in the
student union food court at the
University of North Florida.

JACKSONVILLE, Fla. -- The crashing piano notes of Henry Cowell's "The Tides of Manaunaun" — parts of it played with the flat of the hand, the fist and the forearm — rings out through the University of North Florida classroom, majestic and brooding.
The students remain straight-faced throughout the 100-year-old experimental piece. It's a music appreciation class, but they give few signs of appreciating the composition, at least not openly.
Except for Joel Reeves, that is. He leans forward. He smiles. He really listens. He's eating it up.
That's what this time of life is about, what college is for, right? And Reeves, 23, is loving his college experience — though at one point in his life few might have thought it likely he would have one.

Monday, April 16, 2012

A Heart Shattered By Glimpse Into Autism

Post from by Rob Gorski, who writes for "Lost and Tired," where he blogs about the reality of raising three boys on the autism spectrum. He and his wife, Lizze, have three boys, Gavin,12, Elliott, 6, and Emmett John, 3. 

CANTON, Ohio -- As the snow started falling, I drove to Giant Eagle to pick up some groceries. With a storm on the way, I needed to stock up on supplies in case we got snowed in.
I pulled into the parking lot of the store and found a spot right in front of the entrance. I sat there for a few minutes, collecting what I needed to take in.
As I reached over to the passenger seat to grab my wallet, I glanced over at the car next to me through the passenger window and saw three people who were loading their groceries into their car. I also saw a large man standing there, reaching over the hood of their car. He was wiping the snow and ice off the car's windshield with his bare hands.
The owner of the vehicle looked at him with an icy stare that seemed to say, "How dare you touch my car?"

Variety Provides Opportunites for Adults with Developmental Disabilities

HOLLYWOOD, Calif. -- Variety has teamed with Pasadena-based Foothill Vocational Opportunities and other partners for an internship program designed to create job opportunities for adults with developmental disabilities.
Coinciding with Autism Awareness Month, six interns recently began a nine-month immersion course that will give them hands-on experience working in Variety's marketing, sales, administrative and editorial departments. Participants will also spend part of each day learning about showbiz in a classroom-like setting.

Sunday, April 15, 2012

Holly Peete Relishes role as Autism Poster Parent

Holly Peete with her husband
Rodney and their children.
DETROIT -- Actress Holly Robinson Peete wants what any mother wants for her kids -- a future in which they're safe and genuinely loved long after she is gone.
Most parents can assume their children will find that, one way or another. For Peete and her 14-year-old son, R.J., who has autism, that's no guarantee.
"As a mom, you worry about protecting your kid," Peete says. "But there are extra added layers of fears when you're talking about a kid with autism or who has some special needs issue. You worry about him being bullied, about being treated unfairly. You worry about him doing the wrong thing in public and it being misconstrued."

Seahawks GM Knows Autism Affects Whole Family

John Schneider
RENTON, Wash. -- The 10-year-old son of Seahawks general manager John Schneider was diagnosed with autism when he was a year-and-a-half old. Schneider and his wife Traci got help for their son, Ben, who is doing well. Now the Schneiders are launching Ben's Fund, which in partnership with Families for Effective Autism Treatment of Washington will provide grants to families to help them cover the cost of medical bills and therapies.

Virginia Families Oppose Deinstitutionalization

I don't understand this . . . but then again I am not a parent of a child who has been in an institution for years. But I have seen how individuals can thrive in community-based programs in New York State. Hope others will share their thoughts on this from either side. 

RICHMOND, Va. -- A years-long plan that would shift Virginia's developmentally and intellectually disabled population from institutions to community settings is creating a furious reaction from some families who say the agreement will threaten the safety of their profoundly disabled loved ones.
Pushed by a federal-state consent decree and a four-year Justice Department investigation of state training facilities for the disabled, the proposal is awaiting final approval from a federal judge and would set in motion one of the most profound shifts in decades of the state's institutionalized, disabled population.

Friday, April 13, 2012

Military Parents With Special Needs Kids: Who Makes The Real Sacrifice?

Quite the post by Anne Woods, Public Relations Director at Hope for the Warriors on Huffington Post.

"This is the best place for you to live. There is an amazing center here that works with autistic kids."
Encouraging words. No one could have known that these words were the last thing I wanted to hear.
It was 2004 and I was living in Sacramento. My 3-year-old son had just been diagnosed with autism. The MIND Institute at the University of California, Davis was hailed as one of the world's premiere autism research institutes. Everyone I met conveyed the same sentiment -- the MIND Institute could single-handedly heal my son.

California Senate Approves Bill to Remove 'R Word' from Books

The use of the "R word" could soon be expelled from California laws.
The California Senate today unanimously approved a bill today that would strip the phrase "mentally retarded" from existing statutes, replacing that and related terms with "intellectual disability."
"Words do matter and the 'R word' is outdated and offensive to people with intellectual disabilities and their families," bill author Sen. Fran Pavley, D-Agoura Hills, said today.

Read more here:

Film Festival Opens Window into Lives of the Disabled

GRAND JUNCTION, Colo. — The Sprout Film Festival will make its Grand Junction debut Friday, April 20, at Avalon Theatre.
The New York City-based Sprout Film Festival was founded in 2003 to break down stereotypes and misconceptions surrounding people with developmental disabilities by using the power of film.
Ten short films will provide insight into the lives of the intellectually disabled, some of whom star in films or work behind the camera. The festival chooses films of “artistry and intellect from around the world specifically related to the lives, performances and accomplishments of people with developmental disabilities” collected by the nonprofit Sproutflix.

When People See a Situation that Cries Out for Action, Do They Step in, Back Away or Just Walk on by?

Using hidden cameras, “What Would You Do?” establishes everyday scenarios and then captures people’s reactions. Whether people are compelled to act or mind their own business, John QuiƱones reports on their split-second and often surprising decision-making process. “Primetime: What Would You Do?” airs FRIDAY, APRIL 13 (9:00-10:00 p.m., ET) on ABC.
Tonight's scenarios include Autistic Kids (in conjunction with Autism Awareness Month):  When an autistic child has a meltdown at a restaurant, and a fellow patron complains, how will others react?
“Primetime: What Would You Do?” has won awards from the Chicago International Television Festival, and the Avon Foundation’s 2006 Voice of Change award for exposing “injustice and wrongdoing against women and bringing the message of domestic violence to the mainstream.”

'I'm More Than Just a Dancer'

Alex Gumm performs a musical theater
tap dance with Lauren George
called “Goodbye Joe.”
CARSON VALLEY, Nev. -- To watch 15-year-old Alex Gumm dance one would never know he was diagnosed with autism.
The disorder was discovered in 1998 when he was 22 months old. Alex was soon enrolled in the early childhood autism program at UNR where doctors and tutors worked closely with him for four years.
“They basically saved Alex,” his mother, Toni, said. “If he didn't have them he wouldn't be functioning as well as he is today. I'm very grateful to them.”

Thursday, April 12, 2012

Kansas County Urges Governor to Reconsider Medicaid Managed Care Plan

TOPEKA, Kan. -- The Shawnee County Commission is throwing in its two cents on the state’s Medicaid managed care debate.
The three-member commission passed a resolution Thursday encouraging Gov. Sam Brownback to reconsider his KanCare plan. The governor's office is examining bids from five private managed care companies for three contracts to administer state Medicaid services worth $2.8 billion.
The plan is expected to save the state $850 million over five years without cutting eligibility or services

Crusader Against 'Dental Crisis'

Dr. Gregory Folse making his
rounds at a nursing home.
LAFAYETTE, La. -- Not many people are overjoyed when they see a dentist walk in to check them out. But that's exactly what happens when Dr. Gregory Folse walks into a room.
Renella Jackson, 59, is a resident of the Courtyard Manor Nursing home in Lafayette. She lit up and could not seem to stop laughing when she saw Folse for her appointment to get fitted for a new bridge.
On Monday, Folse paid a visit to her and other residents of the home as part of his routine practice providing much-needed dental services to the elderly and homebound. Much of his time is spent traveling from one nursing home to another, taking care of some of the most forgotten patients who have some of the worst dental problems.

3 Guardians Drop Idaho Medicaid Lawsuit

BOISE, Idaho -- Three guardians for developmentally disabled Idaho residents have dropped their lawsuit against the state over Medicaid changes.
Russell and Sandra Knapp and Jana Shultz last year sued Idaho Department of Health and Welfare Director Richard Armstrong and Medicaid Administrator Leslie Clement, saying the department's plan to consolidate some Medicaid-covered services would violate their wards' right to freely choose their own health care providers.
But the Knapps and Shultz decided to drop the lawsuit last week, because the consolidation was being implemented faster than the lawsuit could work its way through the court system.

Wednesday, April 11, 2012

Can Autism Really Be Diagnosed in Minutes?

A Harvard researcher says he's achieved exceptional accuracy in identifying autism by using just seven online questions and an evaluation of a short home video of the child, instead of conventional, face-to-face exams that can take hours.

Living with Autism

This week we’ve been talking about autism, what we know about it, and how autism coverage is changing in Michigan.
Twenty-two-year-old twin sisters Michelle and Nicole Bouchard both have Asperger’s syndrome. It’s commonly thought to be at the milder end of the autism spectrum. 
Michelle says school wasn't easy. "There was a list of things they told me I couldn't do. I couldn't go to college, I couldn't find a was a big struggle for me," she says.
Nicole's experience in school was a bit different. "I tested a little bit higher than Michelle did and I was put in mainstream classes, but pulled out."

Opinion: New York's Role in Treating Autism

From The Albany Times Union, a column by Dr. Terry Hamlin, chief of staff at The Center for Discovery in Harris, Sullivan County, and head of the Discovery School for children with autism.

The numbers released late last month by the Centers for Disease Control showing a significant increase in the prevalence of autism among children are sure to cause alarm and controversy. With 1 in every 88 children now being diagnosed with autism, we are confronted with what amounts to an epidemic and the greatest public health threat to our children, outpacing obesity and diabetes.
However, with obesity and diabetes, at least we know the general causes, we have good medical diagnostics and measures and we can formulate viable solutions. But with autism, we are mostly in the dark. We have yet to ascertain its origins. There there is no real consensus as to whether autism is one of nature versus nurture — genetic or environmental — or a combination of both.
The only thing that educators and service providers agree on is that there is a growing population of very different children in our schools and in our communities who require very different supports from what we have available, especially for the more severely affected.

N.J. Moves Toward More Community Homes

Paul Salavatore with state Human
Services Commissioner Jennifer
Velez in Closter
on Tuesday. Salavatore
lives in a group home in Haworth
CLOSTER — At least 16 New Jersey municipalities have committed to using affordable housing trust funds to provide supported homes for adults with developmental disabilities, Human Services Commissioner Jennifer Velez said Tuesday.
Combined with state matching funds, the money is expected to help open at least a couple dozen community homes for the disabled, each of which would house several people with disabilities ranging from severe intellectual disabilities to cerebral palsy and autism.

Tuesday, April 10, 2012

Improv Comedy and Better Parenting

Written by Katie Anderson for

Seriously, I can't bitch. I've gotten everything I asked for. As a kid, I had only one prayer: "Jesus Christ (for, that was my God) please make my life not so boring."
Action was what I expected out of suburban Ohio and I got it. In Ohio, yes even in Ohio, freaks abide, my friends, freaks do abide. In the early '90s I spent most of my free time in bars and comedy clubs performing improv. I worked with MC2, the home team of the more famous and yet still mostly unknown comedy troupe of Midwest Comedy, Tool and Die (ask Drew Carey, he knew them). Those days revolved around comp tickets to shows, radio spots and hosting karaoke in exchange for free beer. Back then I shuddered at the thought of getting saddled with anything normative like marriage or "safe" neighborhoods or driving a fully functioning car. I had intended to have the type of life that involved lots of last-minute dinner reservations and waxing appointments.

States Work to Shrink Reliance on Long-Term Care

CLARKSDALE, Miss. (AP) — The aneurysm that blew out the lights in J.B. Rushing's head left him momentarily blind, his left side numb, his mouth twisted and unable to form words.
It left him without a life of his own.
He was in his 40s when he entered a nursing home, the whippersnapper among mostly elderly folks, some of whom lay in bed by the hour, their lives ticking down with each stroke of the clock.
"I would watch them," said Rushing, now 50, of Clarksdale, "and it seemed like there was no hope for them; I didn't want that to be me."