About one out of every 110 children is diagnosedwith autism.

Sixty years after being identified as a disorder, scientists still don't knowwhat causes autism. And, just like snowflakes, no two individuals with autismare alike. On one end of the spectrum is Asperger's Disorder, a highfunctioning sub group of Autistic Spectrum Disorder, and on the other end ofthe spectrum are profoundly disabled individuals.

Watch this Learning for Life as we talk with Dr. Felice Orlich, with Seattle Children's Autism Center, about what autism is, how it's diagnosed and the signs parents should look for. We also explore the issue of whether there are enough resources available to support the increasing numbers of children being diagnosed with an Autism Spectrum Disorder and their families.

Learning for Life airs every Wednesday on KING 5 Morning News on KONG 6/16 TV between 8:15 and 8:30 a.m.

Please send any story ideas about people, programs and work being done to support children from birth to age 5 to molly@thrivebyfivewa.org. 

Learn more and watch past Learning for Life series and specials here.

 

(This is the fourth story in a series on special needs in early education.)

Could autism overwhelm federal programs that support children with disabilities?

Autism appears to be nearly everywhere these days - 1 in 110 children are now diagnosed with the disorder, according to the Centers for Disease Control. It is on “Oprah,” national magazine covers and the minds of parents.

Now there are signs not every child that could have autism is getting diagnosed. Researchers found lower rates of diagnosis among African American and Hispanic families and suggestions that parents’ education may play a role in getting a diagnosis, according to a commentary.

What would happen if every family had access to high-quality autism screening and intensive services, which can total more than 20 hours a week? Would the system fall apart? These are among the questions raised by the commentary “Is Autism the Disability that Breaks Part C?”

We worry, however, that as professionals continue to make recommendations for intensive early intervention for children with ASD (autism spectrum disorders), the programs are going to crumble under the additional burden. – “Is Autism the Disability That Breaks Part C?” Journal of Early Intervention, 3/10.

The fact is the recent spike in autism diagnoses is already straining the system. Parents of autistic children run into waitlists, a shortage of therapists and health insurance that often fails to cover tens of thousands of dollars in therapy a year. This occurs even in cities such as Seattle, which are home to cutting edge research and support.

The commentary wonders whether this increase could strain or break federal support for disabled infants and toddlers, known as Part C.

One of the most important issues it raises is a divide between haves and have nots within the autism community.

We worry, however, that establishing an early and accurate diagnosis may be related more to where a family lives, whether the parents went to college, and what medical insurance they have than to the young children's behavioral profiles. To the extent that our perceptions are valid, something in "the system" is not working. – “Is Autism the Disability That Breaks Part C?”

Schwartz also suggests there is a gap between families who get a diagnosis of autism for their child and those whose children have another type of developmental delay.

“There is also a divide between families who have ASD (autism spectrum disorder) and those who do not,” Schwartz wrote in an email. “…But we need to provide services for all children that are high quality.  Unfortunately… the way schools are funded that is becoming increasingly difficult.”

The co-authors write in their commentary they are far from opposed to intense early intervention for children on the autism spectrum. In fact, they point out they developed one of the models. Instead, they write the system needs to be changed to ensure all families raising a child with a disability get support.

Co-author Ilene Schwartz, who adds in the story she is hopeful the system will not collapse, has ideas to ensure the system doesn’t break.

One of her most interesting proposals is that high quality child care could help manage the burden.

“If all children had access to high quality child care, then we may be able to provide fewer hours of specialized instruction.  High quality child care where children are engaged and have high quality and consistent interactions with caring adults, supported by some specialized intervention and some training for parents and other caregivers may be sufficient and it would certainly be more sustainable and more child friendly,”    Schwartz, director of the University of Washington’s Haring Center for Applied Research and Training in Education, wrote in an email.

Schwartz raises more questions than answers – not surprising given we don’t know what causes autism or how to cure it.

It sounds like we need to start answering some of these questions before the system breaks down even more.

Article: “Is Autism the Disability That Breaks Part C? A Commentary on "Infants and Toddlers With Autism Spectrum Disorder: Early Identification and Early Intervention, “by Boyd, Odom; Humphreys, and Sam.” By Ilene S. Schwartz and Susan R. Sandall, University of Washington, Seattle. Journal on Early Intervention, 3/10.

You notice your child isn't meeting typical childhood development milestones. Or maybe you sense that something isn't quite right with your child. There is help. And children benefit when families access that help as soon as possible. 

Families can reach out to their local pediatrician or the state's Early Support for Infants and Toddlers, an early intervention program that provides services to children birth to age 3 who have disabilities and/or developmental delays.

Watch this Learning for Life, we talk with Dr. Bette Hyde, director of the state Department of Early Learning, which now oversees the Early Support for Infants and Toddlers program, about the supports available to children with special needs and how to access the program as well as how this growing group of children fits into the state's new 10-year early learning plan. This segment is the first in a month-long series Learning for Life – and Thrive’s daily blog Birth to Thrive Online – is doing on children with special needs.

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Learning for Life airs every Wednesday on KING 5 Morning News on KONG 6/16 TV between 8:15 and 8:30 a.m.

Please send any story ideas about people, programs and work being done to support children from birth to age 5 to molly@thrivebyfivewa.org. 

Learn more and watch past Learning for Life series and specials here.

(First in a series on special needs in early learning.)

Special needs families sometimes seem stuck in the back rows of early learning debates, at times overlooked in discussions about building a better child care system. But, the growing ranks of children with autism and other disabilities may move them closer to the front.

The reality is many parents of infants and toddlers with special needs navigate a different and more complex child care world than most families. It is a confusing world of assessments, expensive medical services, therapies and inadequate health insurance. The result is these families work far harder to create an educational experience that other parents of more typical children find in a single classroom.

In the expanding debate over building a better early learning system where do these families fit?

They don’t always fit into public debates.  When politicians discuss the need for higher quality child care and preschool, these families are not always mentioned.  It is not an intentional slight - the special needs population is relatively small – but given potential benefits of inclusive classrooms for disabled and non-disabled children you might think they would have a bigger role.

Sometimes these families are not even in early learning.

One Seattle mother says she doesn’t know any families with special needs children who go to organized child care. Often, one parent stays home, which can work well but takes away income when a family needs it for their child’s medical bills and other services, or they rely on a nanny, Aleksandra Markanovic Radmanovic, wrote during an email interview.

“It's unbelievable how much money it takes to raise a child with special needs. Everything seems to be exponential! Everything - and that includes childcare,” Radmanovic, whose son has multiple disabilities, added.

Even though it is expensive, funding for one of the key programs that helps these families, Part C, has been stagnant in recent years, according to data from The National Early Childhood Technical Assistance Center. Part C is the program of the Individuals with Disabilities Education Act that supports coordination of statewide early intervention systems for infants and toddlers.

“The availability of high quality child care is not anywhere near where people would like,” said Maureen Greer, administrative liaison at the IDEA Infant Toddler Coordinators Association.
These families are not ignored – there are strong networks of federal, state and local programs that help special needs children and their families. Washington State’s Department of Early Learning, for example, took over the Early Support for Infants and Toddlers program last month.

Given their growing numbers, though, do these families deserve a bigger role in the debate over creating a better early learning system?

Diagnosis rates are rising. Today, an estimated 1 in 110 children are diagnosed with autism, up from 3 or 4 in 10,000 about a decade ago and as many as 10 percent of children have attention deficit hyperactivity disorder. Rates of depression and youth bipolar disorder in children also rose.

Overall, the number of infants and toddlers with disabilities who have early intervention plans jumped from 194,000 in 1990 to 343,000 in 2008, according to The National Early Childhood Technical Assistance Center.

The impact is clear: Regardless of your opinion about why these rates are rising, more parents are likely searching for child care centers and preschools that can support their child’s special needs.

One of the problems is there isn’t enough in federal and state budgets to finance popular general improvements in child care and preschool, let alone for changes in special needs programs.

There are signs of progress. Washington State’s draft early learning plan would expand two key services. The plan calls for universal developmental and social-emotional-mental health screening and referrals from birth through third grade. It also would add at-risk children, such as those in foster care and some born prematurely, to those served by the Early Support for Infants and Toddlers program.

Of course, Washington will have to find new funding for some of these changes.

“We know that making these enhancements to screening and accessibility will mean changes in policy and, in some cases, more money. Obviously, there are not many extra dollars to go around in this current budget situation, but we will continue to encourage smart investment in programs like early intervention that we know more than pay for themselves over time,” Amy Blondin, a spokeswoman for the Department of Early Learning, wrote in an  email.

One thing is clear. There are a growing number of families with special needs children and they could become a more powerful force in the early learning debate.

Over the next three weeks each Tuesday we will explore issues special needs families face in early learning:  The tight budget situation and how it could affect support; one family’s effort to find the right child care; and a look at autism’s role in both raising the profile of special needs and straining its resources.

Vaccine fears are back in the news today. Many parents are concerned about negative reactions to vaccines and one-quarter think these shots can cause autism, a new study found.

Overall, 54 percent of surveyed parents said they were concerned about “serious adverse effects of vaccines,” according to a story on the new research published today in Pediatrics, the journal of the American Academy of Pediatrics.  In addition, 25 percent agreed with the statement that “some vaccines cause autism in healthy children.”

That is the bad news. The good news is that the vast majority of parents (90 percent) agreed that vaccines are a good way to protect against disease, and 88 percent said they follow their doctor’s advice on shots, researchers said.

These findings come with a caveat. The work was done before a key study suggesting a link between autism and vaccines was retracted last month. But, widespread worry about vaccines shown in this new report suggests there is a bigger problem than one discounted study.

“Although information is available to address many vaccine safety concerns, such information is not reaching many parents in an effective or convincing manner,” researchers wrote in Parental Vaccine Safety Concerns in 2009. “Continued high childhood immunization rates will be at risk if current safety concerns are not addressed effectively and increase in the future, resulting in more parents’ refusing vaccines.”

Further reading: “1 in 4 Parents Thinks Shots Cause Autism.” Associated Press, via MSNBC.com, 3/1/10.

 

Research News: A expectant mother’s stress can affect a baby’s cognitive development, but a mom’s nurturing can offset the impact, “Good Parenting Triumphs Over Prenatal Stress.” Thanks to Early Childhood Brain Insights for highlighting the story.   

The new draft of the manual for diagnosing mental disorders arrived this week and its changes to the definition of autism and other disorders could affect the early learning world.

For example, the draft would drop the Asperger’s diagnosis and wrap it into an autism spectrum disorder, media outlets are reporting. This revamped diagnosis would cover a range of symptoms for a disorder that is already defined by a wide range of behaviors.

While doctors, experts and advocates are still digesting all of the changes, there already are thoughts about what will happen now. Darrel Regier, vice-chair of the DSM-5 (the manual) task force, suggested it could lower the number of people who are diagnosed with autism, according to USA Today. Last year, the Centers for Disease Control reported that 1 in 91 children are diagnosed with the disorder.

Meanwhile, noted autism author Roy Grinker thinks the changes could help.

The change is welcome, because careful study of people with Asperger’s has demonstrated that the diagnosis is misleading and invalid, and there are clear benefits to understanding autism as one condition that runs along a spectrum.  –Grinker, author of “Unstrange Minds: Remapping the World of Autism.” Op-ed, New York Times, 2/9/10.

What does it mean for early learning? It’s too early to tell, but the increasing number of kids diagnosed with mental illnesses, disorders and behavioral issues, often at younger ages, is a big issue for educators. Hopefully, the final version of this manual will offer some clarity.

We will keep track of what these changes mean and report developments here.

Don’t Waste Obama’s Budget: Amid budget cuts, President Barack Obama created the opportunity for a major investment in early learning in his fiscal 2011 budget. National Institute for Early Education co-director Steven Barnett writes we shouldn’t waste this chance in “Rx for President Obama’s Early Learning Budget: Tie it Firmly to Education Reform.”

Check it out.

 

The debate over a potential link between autism and vaccines has raged for years, but this week a top British medical journal formally retracted one of the key studies that suggested a possible connection, media outlets reported.

Concerns about vaccine safety have risen in recent years as some parents and researchers suggested there could be a link between recommended shots and autism. The now-retracted research, published in The Lancet, was one of the drivers of those fears. The debate continued even as other studies arrived that showed no causal link between the disorder and vaccines.

The fear of vaccines sparked another fear among public health officials about outbreaks of measles and other diseases.  For example, the percentage of kids who started school lacking at least one of the required vaccinations jumped from 2.7 percent to 5.5 percent in King County alone during the last decade, the Seattle Post-Intelligencer reported last year.

"This retraction by the Lancet came far too late," said Paul Offit, chief of infectious diseases at Children's Hospital of Philadelphia and a coinventor of a vaccination for babies against a gastrointestinal virus, Rotateq, that is marketed by Merck & Co. "It's very easy to scare people; it's very hard to unscare them." – “Lancet Retracts Study Tying Vaccine to Autism,”—Wall Street Journal.2/3/10.

The debate is obviously a concern for the early learning community, since children’s health is a key element in creating high quality early education.

The next question is what will happen to vaccination rates now that this study has been formally dismissed?

The debate does not appear likely to go away.

“Certainly the retraction of this paper doesn’t mean that MMR doesn’t cause autism and it’s all a farce,” said Wendy Fournier, president of the National Autism Association. It is “possible” that the MMR vaccine causes autism, she said, but “the science is not there in terms of the mechanism.” The concern is that measles virus has been found in children’s intestines after vaccination, said Ms. Fournier. – WSJ, 2/3/10.

Further reading:

• “Time to regroup on autism,” CNN, 2/3/10
• “Vaccine-Autism Study Is Retracted,” The New York Times, 2/3/10.
• “Lancet Retracts Study Tying Vaccine to Autism,” Wall Street Journal, 2/3/10
• “Meeting a Child’s Special Needs,” The Juggle, 2/3/10.

Washington State News

On Tuesday, Washington state released the first draft of a statewide Early Learning Plan. News stories ran throughout the state. A story from the Associated Press ran in The (Tacoma) News Tribune, The (Longview) Daily News, The Olympian, The Everett Herald, The Seattle Times, The Tri-Cities Herald, Bellingham Herald and SeattlePI.com
Stories also ran in Wenatchee World, the Yakima Herald-Republic and on KPLU Radio.

• Outside View: Idaho must fund early childhood learning first – 11/24/09, The Spokesman-Review
• Some Christmas Bureau gifts signal importance of early reading – 12/2/09, The Spokesman-Review

National News

• First Steps Program educates parents – 12/3/09, Daily Review Atlas (IL)
• Better parenting: Home visits show young mom how to break her family's cycle of violence – 12/3/09, CHICAGO TRIBUNE (IL)
• The mind unchecked: Is a toddler's lack of self-control key to early learning? –12/1/09, Los Angeles Times – Blog: Booster Shots
• Autism treatment works in kids as young as 18 mos. – 11/30/09, The Washington Post
• Kaine pays Grove Park a visit – 11/30/09, Danville News (VA)
• In weighing universal pre-kindergarten, Delaware monitors test model in Md. – 11/28/09, The News Journal (DE)
• Opinion: Provide flexibility in state aid for preschool – 11/27/09, The Detroit News (MI)
• Children showing gains in Jacksonville Journey project – 11/28/09, The Florida Times-Union (FL) Editorial: Help poorest preschoolers – 11/27/09, The Star-Bulletin (HI)
  

Research/Policy

• In 'out of touch,' Idaho, pre-k missing from conversation – 11/30/09, Hechinger Institute: Early Stories on Journalism, Children and Learning

The mysterious and often frustrating world of autism treatment holds a few lessons for the early learning community.

The latest evidence landed this week, when researchers released a study that showed children who were diagnosed with autism at a young age – under 2 ½ years old – and received intensive therapy often made remarkable progress. 

How remarkable? Only 56 percent of the children who received intensive therapy still had their autism diagnosis after two years, compared to 76 percent of the kids who received more typical treatment, according to the article in Pediatrics. Overall, the therapy, known as the Early Start Denver Model, boosted IQ, literacy and social skills.

Another finding showed, “almost 30 percent in the specialized group were re-diagnosed with a less severe form of autism after two years, versus 5 percent of the others,” the Associated Press reported.

The study has limits. The biggest is researchers only studied 48 children, though the work is now being expanded, according to the news service.

The broader message is this study could create waves far beyond those confronting autism because it’s stunning proof of early intervention’s effectiveness. If a child with autism takes major strides towards a more “typical” life with quality care, though this kind often costs tens of thousands of dollars a year, it shows how critical the first three years are and how important quality is.

Now, I don’t want to take this comparison too far. Autism remains a mysterious disorder with its own traits and no known cure, often sadly far removed from mainstream society. But this breakthrough should encourage those working to provide more kids with an excellent early education.

It clearly shows quality matters.

Autism seems to be everywhere today, but a new film suggests not all newly-diagnosed children have the mysterious disorder and that these autistic-like children could help us understand how students learn and improve the first years of education.

“Autistic-Like: Graham’s Story” is about how one family was told their son was autistic, only to learn months later from another doctor that while he had characteristics of the neurological disorder, he was not on the spectrum.

This wasn’t about splitting diagnostic hairs because Graham’s diagnosis would likely shape his education. When teachers hear one of their students carries an autism label, they often brace for a non-communicative student with severe behavioral problems, classic symptoms of autism, Erik Linthorst, Graham’s father and the film’s director, said in an interview.

Graham, however, was sociable and had relatively few outbursts.

“I could just tell by the way she (his teacher) was approaching him. All she did was marvel at how verbal he is,” said Linthorst, whose film shows in Redmond this weekend. “She was prejudging by a label.”

The film’s idea of autistic-like extends far beyond medical and research circles. Linthorst suggests all incoming kindergartners could benefit from a sensory profile test, like the one that found his son was not autistic.

“It is part of this refinement process. We are starting to look at these kids, instead of putting labels on them we are starting to take an individualized approach,” Linthorst, a veteran of the Hollywood movie scene, said. “What is the individual nervous system doing and how can (it) best help them climb up the developmental ladders?”

The test, for example, can help teachers and parents discover if a child is a visual or auditory learner, Linthorst added.

I am not endorsing or rejecting Linthorst’s idea, only suggesting the expanding world of autism – an estimated 1 in 91 children are now diagnosed with the disorder - may increasingly hold lessons for those outside it.

Parents of typically developing children can even learn a few things from autism therapy. As Linthorst was lying on the floor in a therapy session -  where he made big faces and voices with Graham, followed his son’s interests and was basically creative and silly  – he realized a lot of what he was doing was simply good parenting.

“That’s what we’d all love to do with our typical kids, but most parents don’t. We talk down to our kids, try to make every moment a teaching moment (often inappropriate skills like learning colors when we should be encouraging communication and engagement), want them to be interested in what we think they should be interested in, and generally don’t have time to be silly,” Linthorst added in an email.

Seattle-area parents can meet Erik Linthorst and check out his film this Saturday in Redmond.

When: 6 p.m. to 9 p.m.
Where: Sammamish Forest Manor, Redmond, WA
RSVP: carrie@sensoryplanet.com