Tag: child

Early Intervention in Autism Improves Language, IQ and Social Skills

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Credit: UC Davis Health
Sally Rogers, PhD works with a child.

Breakthrough research demonstrating that children with autism as young as 18 months can vastly improve their language, cognition and social skills with an early intervention developed by UC Davis Professor Sally Rogers has been replicated in a major new study.

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Rogers, a professor of Psychiatry and Behavioral Sciences at the MIND Institute, began work on a novel developmental approach to autism in Denver in 1981, and in partnership with her colleague and co-author Geraldine Dawson developed an approach to improving long-term outcomes for very young children. The Early Start Denver Model has since become a method used throughout the U.S. and around the world.

But until now ESDM had not been tested in the most rigorous fashion − a multi-site randomized trial, comparing the approach with community-based autism interventions. The study, which appears today in Journal of the American Academy of Child and Adolescent Psychiatry, began in 2007 at three university sites around the country. The new research replicates an ESDM study published in 2010. Rogers emphasized that replication studies are rare and costly but critical to validate novel scientific findings.

The new study found that children receiving intensive ESDM in their homes for an average of 15 hours per week made significantly greater language gains than did children in the community interventions, and this was true for both children with more severe delays and those with less.

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In addition to validating the efficacy of ESDM for language development, the study also found that children receiving services in the community settings made large gains in several areas.

“The idea that little children with autism who are getting good treatment can make this much IQ and language gain means we should expect this from quality early-intervention experiences,” Rogers said. “These findings should raise families’ hopes a whole lot.”

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Pioneering autism treatment was a new idea

What distinguishes ESDM from the more traditional, behavioral interventions used with children with autism is that it combines developmental and behavioral approaches and is carried out within in everyday routines. ESDM is built on moment-to-moment interactions that young children typically have with other people, especially their parents, and uses children’s interests and favorite activities to assure that social interaction is interesting and fun.

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“Unlike other approaches popular at the time that the Denver Model began, we used a typical preschool physical environment and focused on the learning opportunities that existed in social interactions between children and adults to accelerate children’s development,” Rogers said. “This was a new idea at the time.”

In 2012, TIME magazine named ESDM one of the top 10 medical breakthroughs because their work demonstrated that brain function among young children with autism can normalize with effective early intervention in profound, enduring ways.

For the current study 118 children with autism, ages 14 months to two years, were enrolled and randomly assigned to either ESDM or community interventions for 27 months. Children assigned to ESDM intervention received three months of weekly parent coaching followed by 24 months of one-on-one treatment about 15 hours per week in homes or daycare settings from supervised therapy assistants. Parents received coaching four hours monthly from a certified ESDM therapist. In the community setting, hours of treatment varied by site.

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What researchers found was that at two of the three sites, children receiving ESDM had significantly more language improvement than the children in the community interventions, and there was no significant difference in language gain at the third site between the two modalities. When results from all three sites were pooled, there was a significant advantage for the children in the ESDM group overall.

“Language is the bridge to learning,” Rogers said. “Language is the door that opens up social communication and education and interactions with people in your community. It’s how you share with people. It’s a main vehicle for social interaction once you pass infancy.”

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Autism treatment in the community greatly improved over time

 The study also found that in terms of cognition and social skills, both the ESDM and community treatment groups made significant gains. Fortunately, Rogers said, laws requiring insurance coverage for early autism intervention and new knowledge about effective treatment have greatly improved community options for families seeking help for young children diagnosed with autism.

Rogers said families with a child diagnosed with autism should take some comfort knowing that the early treatments now widely available do make a difference.

“It says the autism scores at the time of diagnosis are just a starting point,” she said. “It says that the developmental paths and learning capacity of young children with autism are more plastic than we knew, and there are many ways to get learning opportunities to them.”

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In addition to Rogers, UC Davis authors on the study were Marie Rocha, Laurie Vismara and Meagan Talbott. Other co-authors on the study included: Annette Estes and Jessica Greenson of the University of Washington; Catherine Lord and Jamie Winter of Weill Cornell Medicine, Cornell University; Costanza Colombi of University of Michigan; Geraldine Dawson of Duke University, and Gerhard Hellemann of UCLA.

This study was supported by individual Autism Speaks grants to Annette Estes and to Sally Rogers and by NIMH/NICHD award number R01 081757 as part of the Autism Centers of Excellence (ACE) Treatment Network, clinicaltrials.gov identifier NCT 00698997.

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Sex, Lies, and Autism Research

 

How can we get tangible benefit from the millions we spend on autism science?.
Posted Nov 12, 2017

The U.S. government is the world’s biggest funder of autism research.  For the past decade I have had the honor of advising various agencies and committees on how that money should be spent. As an adult with autism, sometimes I’ve been pleased at our government’s choices. Other times I’ve been disappointed. Every now and then I turn to reflect: What have we gotten for our investment?
Autistic people and their parents agree on this: The hundreds of millions we’ve spent on autism research every year has provided precious little benefit to families and individuals living with autism today. Over the past decade the expenditures have run into the billions, yet our quality of life has hardly changed at all.
It would be one thing if massive help was just around the corner, but it’s not. There are no breakthrough medicines or treatments in the pipeline. Autistic people still suffer from GI pain, epilepsy, anxiety, depression, and a host of other issues at the same rates we did before any of this research was funded.
I don’t mean to suggest that nothing has been accomplished.  Scientists have learned a lot. They know more about the biological underpinnings of autism. Researchers have found hundreds of genetic variations that are implicated in autism. We’ve quantified how autistic people are different with thousands of studies of eye gaze, body movement, and more. Scientists are rightly proud of many of their discoveries, which do advance medical and scientific knowledge. What they don’t do is make our lives better today.
Why is that?
In the past I’ve written about the idea that taxpayer-funded research should be refocused on delivering benefit to autistic people. What I have not written about, is why that hasn’t happened, at the most fundamental level.
The answer is simple: Until quite recently, autistic people were not asked what we needed.
There are many reasons for that. Autism was first observed in children and no one expects children to have adult insight and self-reflection. When autism was recognized in adults, they were assumed to be too cognitively impaired to participate in conversations about their condition. Finally, in the spirit of the times, doctors often assumed that they knew best. They were the trained professionals, and we were the patients (or the inmates.)
So doctors studied every question they could imagine, and then some, seldom seeking our opinions except in answer to their research questions. They assumed they knew what “normal” was, and we weren’t it. Countless million$ went down the rabbit hole of causation studies, whether in genetics, vaccines, or other environmental factors. Don’t get me wrong—the knowledge we’ve gotten is valuable for science. It just did not help me, or any autistic person I know.
Millions more have been spent observing us and detailing exactly the ways in which we are abnormal. Only recently have some scientists began to consider a different idea: Perhaps “normal” is different for autistic people, and we are it. Again the studies enhanced the scientists’ knowledge but didn’t do much to help us autistics.
Then there are the educators and psychologists. They observed our “deviations” and then considered therapy to normalize us. That led to ABA and a host of other therapies. Some of those have indeed been beneficial, but the money spent on beneficial therapy is just a drop in the bucket when considering what we taxpayers have funded overall.
Want a different and better outcome? Ask actual autistic people.

We can tell you what our problems are, in many cases very eloquently. I’m not going to re-state all our needs here. I’ll tell you this: Whenever this topic comes up at IACC (the Federal committee that produces the strategic plan for autism for the U.S. government), the priorities of autistic people seem rather different from those of the researchers our government has been funding for so long.
Autistic people have many disparate needs, but they all boil down to one thing: We have major challenges living in American society. Medical problems, communication challenges, learning difficulties, relationship issues, and chronic unemployment are all big deals for us.  The issues are well laid out and many.
Before autistic people began speaking out in great numbers, all we had was parent advocacy. We should not dismiss that, and parents still have a role today, particularly in advocacy for small children and children who are older but unable to effectively advocate for themselves.
Even as we thank parents for their service, it’s time to recognize autistic voices (some of which belong to parents too) should be taking the lead.
As much as parents did for us, they also unwittingly contributed to harm. Parents misinterpreted harmless stimming, and encouraged therapists to suppress it, leaving us scarred in adulthood. Many autistics of my generation remember being placed into programs for troubled children with parental encouragement in hopes we’d become “more normal.” We didn’t. Parents have given us bleach enemas, and some of us have died from misguided chelation and other treatments to “cure” our autism.
I don’t blame parents for any of that. They did their best, given the knowledge of the day. But it’s a different day now. The children who grew up being “normalized” can talk about how it affected them, and parents and clinicians of today would be wise to listen.

Autistic voices are finally speaking in large numbers and it’s time to pay attention. No one else knows life with autism. Parents and nonautistic researchers are sometimes listening. Hard as this may be for them to hear, they are always guessing. With autistics speaking out all over the world, that’s no longer good enough.
For the first time, IACC has recognized this in the 2017 Strategic Plan Update. They say it’s time for a paradigm shift in how we do research. We need to focus on the needs of people living with autism today. That’s a realization that I appreciate, and it’s long overdue.
So what’s the answer to why we’ve gotten so little return on our autism research investment: No one asked the autistic people what we wanted. It’s that simple. Had we been able to articulate our challenges, with the framework of knowledge we have today, and had we been listened to, we’d be in a very different place today.
Today is gone, but tomorrow isn’t here yet, and it can be different.
(c) John Elder Robison
John Elder Robison is an autistic adult and advocate for people with neurological differences. He’s the author of Look Me in the Eye, Be Different, Raising Cubby, and Switched On. He serves on the Interagency Autism Coordinating Committee of the U.S. Dept. of Health and Human Services and many other autism-related boards. He’s co-founder of the TCS Auto Program (a school for teens with developmental challenges), and he’s the Neurodiversity Scholar in Residence at the College of William and Mary in Williamsburg, Virginia, and a visiting professor of practice at Bay Path University in Longmeadow, Massachusetts.
The opinions expressed here are his own. There is no warranty expressed or implied. While reading this essay will give you food for thought, actually printing and eating it may make you sick. 

 John Elder RobisonJohn Elder Robison is the author of Raising CubbyLook Me in the Eye, My Life with Asperger’s, and Be Different – adventures of a free range Aspergian.  John’s books are sold in a dozen languages in over 65 countries. 

No, the Mercury in Vaccines Does Not Cause Autism

 

 By
 Jordan Gaines Lewis, Ph.D.

With the recent news of President-Elect Trump’s talks with Robert F. Kennedy, Jr. to potentially head a new commission on vaccine safety and scientific integrity, many in the scientific and healthcare communities are understandably rattled. Kennedy is a well-known skeptic of vaccine safety, and has previously described the vaccine/autism allegations as such:

 
“They get the shot, that night they have a fever of a hundred and three, they go to sleep, and three months later their brain is gone. This is a holocaust, what this is doing to our country.”

Mercury is toxic to the human body. It’s important, however, to understand how the mercury present in immunizations is different than the mercury in, say, the scary old thermometer in your medicine cabinet.
Thimerosal is a vaccine preservative. Since the early 20th century, small amounts of thimerosal have been used in vaccines to prevent the growth of fungi and bacteria. Thimerosal is mainly composed of ethylmercury. When we hear concerns of mercury toxicity (for example, with the consumption of fish), we are primarily concerned about the compound methylmercury.

Methylmercury (left) and ethylmercury (right) have different chemical structures and are metabolized differently in the body.
Source: Wikimedia Commons

Ethylmercury is metabolized and excreted by the body much faster than methylmercury (half-life of 1 week vs. 6 weeks), meaning methylmercury is more likely to “build up” in the body. You consume higher, longer-lasting, more concerning doses of mercury when you eat a serving of fish than when you get a vaccine.
Many independent epidemiological studies over the last two decades have concluded that the low doses of thimerosal in vaccines are not harmful to infants, and the compound is not present in routine childhood vaccination schedules in the U.S., E.U., and several other countries.
All this said, the current scientific consensus is that there is no compelling evidence linking vaccinations and autism; mercury poisoning does not resemble autism, and rates of autism diagnosis continue to rise despite the removal of thimerosal in many vaccines.
Furthermore, there is no evidence to suggest that the American Academy of Pediatrics’ recommended immunization schedule is harmful, or that young children’s bodies can’t “handle” it. Spacing out vaccines only increases the amount of time by which children are vulnerable to contracting vaccine-preventable diseases. The parents‘ choice to delay their children’s immunizations is what caused the measles outbreak in Disneyland in 2015, with nearly 150 cases.
It’s estimated that the MMR (measles, mumps, and rubella) vaccine has saved 17.1 million lives worldwide since 2000. Herd immunity is important for the health of the entire community, as not all children can be vaccinated or will respond satisfactorily to immunizations.
Further reading:

Child Prodigies and Autism Spectrum Disorder

Stephen Camarata Ph.D.

Stephen Camarata Ph.D.

Intelligence, Genius and High Achievement Are Not “On” the Autism Spectrum

Posted Apr 01, 2016

April is autism awareness month—so autism and autism spectrum disorder (ASD) will be in the news. Although the recent redefinition of autism as a spectrum condition ensures that children whose disabilities were previously unrecognized and left untreated are better served; it is also important to be mindful of the boundaries for the autism spectrum to avoid potentially devastating mistakes. This is especially important as society seeks to identify autism spectrum disorder at earlier and earlier ages.
Because very young children have widely variable abilities and behavior patterns that are quite different from older children, key clinical markers of autism in school-age children are much less reliable for diagnosing toddlers and preschoolers. For example, a primary symptom of autism is disruptive behavior—and severe tantrums. In school-age children these behaviors are a very reliable indicator for autism. In contrast, nearly every two-year-old displays rather severe tantrums—after all it is called the terrible twos for a reason! It is absurd to place all two year olds on the autism spectrum because of tantrums. Skilled clinicians can indeed accurately diagnose autism in two-year-olds, but it is all too easy to mistake a naturally occurring tantrum as a symptom of autism spectrum disorder.
Similarly, it is all too easy to mistake the traits of precious, highly intelligent toddlers and preschoolers as symptoms of autism spectrum disorder. In their recent book “The Prodigy’s Cousin[1]” Joanne Ruthsatz and Kimberly Stephens provide engaging—and intriguing narratives describing prodigies. They also note that many of these children have siblings or other first-order relatives who are clearly on the autism spectrum, which is certainly true for mathematicians, engineers, and physicists[2].
Also, for the children described in The Prodigy’s Cousin, it was not unusual for the prodigies themselves to be initially misidentified as having autism. One potential reason for this is that a child prodigy is quite dedicated to developing the ability that captures her interest—be it music, math, art, dance or scientific thinking. Because of this, prodigies tend to practice these talents over and over again often to the exclusion of activities other children are usually engaged in. Although it may seem simple to distinguish prodigy from autism spectrum disorder, it is noteworthy that children with autism are highly “routine preferring” and often do the same things over and over again rather obsessively. And this is precisely what Ruthsatz and Stephens see in prodigies: these children are very focused on practicing and mastering a particular ability. These authors were very straightforward in stating that prodigy behavior should not be viewed as a form of autism, but it is clear that mistakes were made.
But what if the autism spectrum were actually expanded to include the kind of focused practice required to master talent often seen in child prodigies—and in highly intelligent people? What are the consequences for society if the unique talents of prodigies, geniuses, high achievers—or anyone else with asynchronous child development or an unusual learning style—were to be redefined as symptoms of an autism spectrum disorder and eliminated? There is a very real concern that identifying prodigy as a form of autism spectrum disorder would actually end up derailing the development of extraordinary ability in precocious children. To be sure, some people on the autism spectrum are highly intelligent, but being highly intelligent doesn’t necessarily mean a person is on the autism spectrum.
When autism is diagnosed, a relatively strict intervention program is often provided. One goal of this treatment is to diminish obsessive routines. If a child does indeed have autism, this intervention can be highly effective.
But what if a child does not have autism, and is a prodigy instead?  Could treatment designed for autism prevent a math prodigy from developing her unique talents when she is taught to stop “obsessing” on numbers as a cure for her “autism spectrum disorder?”

Before dismissing this notion, bear in mind that many prodigies, high achievers, and highly intelligent individuals are also notoriously noncompliant in addition to being dedicated to developing their special talents. For example, when piano virtuoso Arthur Rubinstein was a child, he smashed a violin when his parents tried to shift his “obsessive” devotion to the piano to other instruments. Would his amazing abilities as a concert pianist have been derailed if his obsession with playing the piano over and over—and his dramatic refusal to comply with requests to be less obsessive —were viewed as a symptom of autism spectrum disorder rather than natural traits of a child prodigy?
Perhaps even more worrisome are recent articles implying that geniuses (and prodigies) such as Albert Einstein, Isaac Newton,[3, 4] Mozart, Bill Gates and many others display signs of autism.  Many many geniuses were temperamental and, at times, difficult to get along with. In addition, perhaps in part because of their high intelligence, they may not necessarily be highly motivated to please teachers or parents or to complete schoolwork they find uninteresting. In his biography, Winston Churchill recalled that “My teachers saw me at once [as being] backwards and precocious, reading books beyond my years and yet at the bottom of the Form [class ranking]. They were offended. They had large resources of compulsion at their disposal, but I was stubborn. Where [whenever] my reason, imagination or interest were not engaged, I would not or could not learn.” [5]. Because there are reports that Mr. Churchill also talked late, one can not help but wonder whether his collection of precocious traits, challenging behavior, and slowed communication development would have resulted in an Autism Spectrum diagnosis in modern times.
Perhaps the most devastating consequence of misguided efforts to retrospectively view high intelligence, prodigy, and high achievement as manifestations of autism spectrum disorder is the trivializing effect this has on the extensive impact that severe “classic” autism spectrum disorder often has on families. It is cruel to suggest that parents of children with autism could have somehow shaped the pervasive developmental challenges these children display into becoming the next Mozart, Einstein, Newton, or Gates if only the “right” treatment were provided early enough. This view of autism spectrum disorder also trivializes the Herculean efforts these families make to help their child learn to speak, to be in school, and to regularly cope with severe tantrums and meltdowns.

We can all applaud the efforts to identify—and treat—autism spectrum disorders as accurately, effectively, and as early as possible. But it is also vitally important that prodigy and genius not be redefined as disabilities requiring treatment—rather than unusual gifts to be nurtured.