Young Children With Autism Benefit Regardless of Treatment Model

Researchers at the University of North Carolina at Chapel Hill have found that preschoolers with Autism Spectrum Disorder (ASD) who receive high-quality early intervention benefit developmentally regardless of the treatment model used — a surprising result that may have important implications for special-education programs and school classrooms across the country.

autism-treatment“This is the first study designed to compare long-standing comprehensive treatment models for young children with ASD,” said Brian Boyd, a fellow at UNC’s Frank Porter Graham Child Development Institute (FPG) and one of the study’s co-principal investigators. Boyd also is an assistant professor in occupational science and occupational therapy in UNC’s School of Medicine.

“We know that more children are being diagnosed with ASD each year, and that it can cost an estimated $3.2 million to treat each child over a lifetime. Understanding that a child can benefit from a high-quality program, rather than a specialized program, may help reduce those costs by decreasing the need for teachers and other school practitioners to be trained to deliver multiple specialized services,” Boyd said. He stressed it remains important to ensure educators are trained to provide high-quality programs that meet the special behavioral, communication and other needs of children with ASD.

Previous research has shown that when children with ASD have access to early intervention via treatment programs, they improve developmentally. Until now, however, debate has persisted over which approach to use, said Boyd. The study appeared in the June issue of Journal of Autism and Developmental Disorders.

Two frequently used comprehensive treatment models have a long history: LEAP (Learning Experiences and Alternative Program for Preschoolers and their Parents) and TEACCH (now known only by its acronym).

FPG’s study examined the relative effects of the LEAP and TEACCH school-based comprehensive treatment models when compared to each other and to special-education programs that do not use a specific model. The multisite study took place only in high-quality classrooms and enrolled 74 teachers and 198 3- to 5-year-olds in public school districts.

The study found that children made gains over the school year regardless of the classroom’s use of LEAP, TEACCH or no specific comprehensive treatment model. “Each group of children showed significant positive change in autism severity, communication and fine- motor skills,” said Kara Hume, FPG scientist and co-author. “No statistically significant differences were found among models, which challenged our initial expectations — and likely the field’s.”

“This study may shift the field’s thinking about comprehensive treatment models designed for young children with ASD,” said co-author Samuel L. Odom, FPG’s director and the study’s principal investigator. “Perhaps it’s not the unique features of the models that most contribute to child gains but the common features of the models that most influence child growth.”

Researchers from East Tennessee State University, the University of Miami, Florida International University, University of Minnesota and Griffith University also participated in the study.




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Scientists Link Gene Mutation to Autism Risk


Scientists Link Gene Mutation to Autism RiskTeams of scientists working independently have for the first time identified several gene mutations that they agree sharply increase the chances that a child will develop autism. They have found further evidence that the risk increases with the age of the parents, particularly in fathers over age 35.

The gene mutations are extremely rare and together account for a tiny fraction of autism cases — in these studies, only a handful of children. Experts said the new research gave scientists something they had not had: a clear strategy for building some understanding of the disease’s biological basis.

Scientists have been debating the relative influence of inherited risk and environmental factors in autism for decades, and few today doubt that there is a strong genetic component.

But biologists have groped in vain for a reliable way to clarify the underlying genetics of these so-called autism spectrum disorders, including Asperger syndrome and related social difficulties that are being diagnosed at alarmingly high rates — on average, in one in 88 children, according to a government estimate released last week.

Previous studies have produced a scattering of gene findings but little consensus or confidence in how to proceed.

The new research — reported in three papers posted online on Wednesday in the journal Nature — provides some measure of both, some experts said. There are probably hundreds, perhaps more than a thousand, gene variations that could disrupt brain development enough to result in social delays.

An intensified search for rare mutations could turn up enough of these to account for 15 percent to 20 percent of all autism cases, some experts say, and allow researchers a chance to see patterns and some possible mechanisms to explain what goes awry.

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10 Things Not to Say to Parents of Children with Autism

By May Institute

10 Things Not to Say to Parents of Children with AutismPeople can be cruel even when they don’t mean to be. A disapproving look, careless reference, or impatient gesture directed at an individual with an autism spectrum disorder (ASD) or a member of their family can be as painful emotionally as any physical injury sustained. Yet, despite the explosion of information on the Internet about autism, the disorder is still often misunderstood by many outside the autism community. New and sobering statistics from the Centers for Disease Control and Prevention (CDC) indicate that one in every 88 children in the U.S. has an autism diagnosis.

Autism is a developmental disability that typically appears during the first three years of life. It is a neurological disorder causing difficulty with communication, learning, and social interaction. There is no known cause of autism and there is no cure.

To help inform the public during National Autism Awareness Month in April, parents of children with autism enrolled at May Institute’s special education schools were asked to identify hurtful or insensitive remarks that have been directed at them and their families. They also shared suggestions for how the community can be more supportive.

What Not to Say:

  1. “What’s wrong with her?”
  2. “Why do you let him do that? He is scaring my child.”
  3. “You know, there is no cure.”
  4. “Have you tried ……? If you did, she would be more normal.”
  5. “I don’t know how you do it.”
  6. “Is she getting any better?”
  7. “Why don’t you just leave your kid at home? It would be so much easier for everyone.”
  8. “My child doesn’t know how to play with your autistic child.”
  9. “Funding would be better spent on normal children.”
  10. “Don’t worry – he’ll be okay.”

“Autism is a very complex disorder. These comments typically come from having a limited understanding of what autism is and what it isn’t,” says Hanna C. Rue, Ph.D., BCBA-D, Vice President of Autism Services at May Institute and Director of Evidence-based Practice at the National Autism Center. “Take opportunities to learn more about autism and other developmental disabilities. Reserve judgment of parents and caregivers who are trying to raise their child on the spectrum in the best way they know how. And remember that individuals with autism have the capacity to feel joy and sadness, and share the need for emotional bonds and connection to others.”

What families want you to know: May Institute also polled respondents about what they believe most people “don’t get” about autism. Here are facts that families of children with autism want you to know about the disorder:

  • Autism is a spectrum disorder – each child is uniquely affected.
  • Autism is not the result of bad parenting or lack of discipline.
  • Autism can “look” like your daughter, son, niece, or grandchild.
  • Parents of children on the spectrum are not paranoid or always overwhelmed with grief.
  • Just because a child with autism is non-verbal or does not make eye contact, it does not mean he or she doesn’t notice the looks or feel pain from being ignored, bullied, or disregarded.
  • Don’t treat kids with autism as if their diagnosis is contagious.
  • Many people with autism are social and want to interact but don’t know how.
  • Please don’t reference anyone – be it an individual with an autism diagnosis or any other diagnosis – as “retarded.”
  • Be kinder than you need to be, because just about everyone is battling something you know nothing about.
  • Parenting a child with autism is difficult and rewarding, just like it is for parents of typical children. It just takes a little more patience and understanding.

People can make a difference when they know how. In the words of one parent, “We need our community to support us. Help us not to feel isolated. Everyone can help in their own way, and everybody’s contribution is appreciated.”

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Biomarker for Autism May Be On the Horizon

By Rick Nauert, PhD

Biomarker for Autism May Be On the HorizonCurrently, physicians and medical scientists diagnose a child as possessing an autism spectrum disorder (ASD) by observing behavior patterns over the child’s first three years of life.

New research from a Swedish University suggests advanced mass spectrometry can provide a rapid, inexpensive diagnostic method for ASD.

Investigators from Uppsala University have published their study, suggesting particular protein patterns or biomarkers can be used to detect ASD, in the journal Nature Translational Psychiatry.

These would be the first acknowledged biomarkers for autism.

Many diseases are caused by protein alterations inside and outside the body’s cells. By studying protein patterns in tissue and body fluids, these alterations can be mapped to provide important information about underlying causes of disease.

Sometimes protein patterns can also be used as biomarkers to enable diagnosis or as a prognosticating tool to monitor the development of a disease. In the current study, disruptions of the nervous system were in focus when the scientists studied protein patterns in autism spectrum disorder (ASD).

Researchers performed a detailed protein analysis of blood plasma from children with ASD compared with a control group. Using advanced mass spectrometric methods, they succeeded in identifying peptides consisting of fragments of a protein whose natural function is in the immune system, the complement factor C3 protein.

The study is based on blood samples from a relatively limited group of children, but the results indicate the potential of the methodological strategy, said researcher Jonas Bergquist, Ph.D. There is already a known connection between this protein and ASD, which further reinforces the findings, he said.

The hope is that this new set of biomarkers ultimately will lead to a reliable blood-based diagnostic tool.


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Brain Imaging Could Detect Autism Risk in Infants as Young as 6 Months

By ALICE PARK | @aliceparkny

Early intervention may help curb some of the more severe symptoms of autism. The question is, How do we identify at-risk children early enough?

Researchers say they may soon be able to identify babies at high risk of autism as early as 6 months old.

Currently, clinicians can’t diagnose autism until toddlers are about 2, when the first behavioral and language symptoms of the developmental disorder become noticeable. There is a push to identify at-risk babies earlier, though, since early intervention may be critical for halting abnormal development and preventing the most troublesome behavioral outcomes associated with autism. But while scientists are developing more sophisticated screening tests that rely on brain-imaging techniques or eye-tracking technologies that monitor an infant’s gaze to pick up early autistic signs, there is still no reliable way to diagnose the condition in younger infants.

Brain Imaging Could Detect Autism Risk in Infants as Young as 6 MonthsNow, reporting in the American Journal of Psychiatry, researchers say that they may finally have a tool that will select out the highest-risk infants at just 6 months old. The innovative test, known as fractional anisotropy, measures the density of white matter, the part of brain that is rich in nerve fibers and makes up the major neural pathways that connect various regions of the brain. Specifically, the technology measures the diffusion of water through nerve-fiber tracts to gauge the density of myelin, the substance that insulates the sometimes long fibers that connect one nerve cell to another; the density of myelin serves as a rough stand-in for the density of neural connections in the brain.

The scientists, recruited 92 children from the Infant Brain Imaging Study Network, which includes four clinical sites around the country. All the infants were considered to be at higher risk of developing autism because they each had at least one older sibling affected by the disorder.

The researchers monitored the children’s brain and behavior development. At 6, 12 and 24 months, the scientists measured the density of the babies’ nerve fibers in the brain, and then tracked them to see who would end up being diagnosed with an autism spectrum disorder (ASD) by age 2 and who did not.

Children who were eventually diagnosed with ASDs were more likely to show thicker, denser nerve-fiber readings at 6 months, compared with normally developing children. But by the time the infants were 2, the situation was reversed: the ASD toddlers had thinner white matter than those who did not develop autism.

“The findings suggest that early on, there is something different going on in children who develop ASDs,” says Geraldine Dawson, chief science officer of Autism Speaks who is also a professor of psychiatry at University of North Carolina Chapel Hill and a co-author of the paper. “Very early on, before the emergence of behavioral symptoms, these neural networks that connect different brain regions are not developing normally.”

Among the 15 nerve-fiber tracts in the brain that linked various regions together, 12 showed aberrant growth patterns in the 6-month old babies who developed ASDs compared with those who didn’t. This suggests, says Dawson, that “there is a more global change in development of these tracts implicated in autism, and that functional connectivity, or the establishment of neural networks is clearly implicated in these findings.”

That means that whatever biological processes are driving autism, they aren’t limited to one region of the brain. And that makes sense, since the disorder’s hallmark behavioral symptoms involve language and social interactions, which require exquisite coordination of several different brain areas.

Dawson and her colleagues stress, however, that their results do not necessarily suggest that the explosion of white matter at 6 months and its subsequent drop-off cause the abnormal development that leads to autism. For now, it’s just an intriguing potential marker for the disorder, one that may help doctors identify infants at highest risk of developing autism early on. Because the study involved only children with a family history of ASD, the next step will be to compare these infants with those whose families are not affected. (There is evidence that even unaffected siblings of autistic children have similar brain changes to those of their autistic brothers and sisters, and may even exhibit subtle symptoms of the disorder.)

A better understanding of how the autistic brain works could, of course, help scientists develop better therapies to treat the disorder. Better interventions could even help prevent ASDs from progressing to more advanced stages that keep children and adults from becoming functioning members of society.

Detecting the first signs of autism, perhaps even in infants younger than 6 months, may be an important part of that effort as well. Studies show, for example, that toddlers on the road to autism who are engaged in language and social-skills therapy can improve their cognitive development and IQ score by as much as 17 points. “One can imagine a day [when], if a baby is suspected of being at risk of developing autism, one could use a biomarker test like this one to identify infants who should perhaps receive early stimulation in language and social development so they can improve their outcomes,” says Dawson. That’s the goal, and tests like these can bring us one step closer toward achieving it.


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The Joint Statement of the Autism Society and Autistic Self Advocacy Network on the DSM-5 and Autism

The Joint Statement of the Autism Society and Autistic Self Advocacy Network on the DSM-5 and Autism  As two national organizations committed to working to empower the autism and Autistic communities today and into the future, the Autism Society of America and the Autistic Self Advocacy Network issue the following joint statement regarding the definition of Autism Spectrum Disorder within the DSM-5.

The autism spectrum is broad and diverse, including individuals with a wide range of functional needs, strengths and challenges. The DSM-5’s criteria for the new, unified autism spectrum disorder diagnosis must be able to reflect that diversity and range of experience.

Over the course of the last 60 years, the definition of autism has evolved and expanded to reflect growing scientific and societal understanding of the condition. That expansion has resulted in improved societal understanding of the experiences of individuals on the autism spectrum and their family members. It has also led to the development of innovative service-provision, treatment and support strategies whose continued existence is imperative to improving the life experiences of individuals and families. As the DSM-5’s final release approaches and the autism and Autistic communities prepare for a unified diagnosis of ASD encompassing the broad range of different autism experiences, it is important for us to keep a few basic priorities in mind.

One of the key principles of the medical profession has always been, “First, do no harm.” As such, it is essential that the DSM-5’s criteria are structured in such a way as to ensure that those who have or would have qualified for a diagnosis under the DSM-IV maintain access to an ASD diagnosis. Contrary to assertions that ASD is over diagnosed, evidence suggests that the opposite is the case – namely, that racial and ethnic minorities, women and girls, adults and individuals from rural and low-income communities face challenges in accessing diagnosis, even where they clearly fit criteria under the DSM-IV. Furthermore, additional effort is needed to ensure that the criteria for ASD in the DSM-5 are culturally competent and accessible to under-represented groups. Addressing the needs of marginalized communities has been a consistent problem with the DSM-IV.

Individuals receive a diagnosis for a wide variety of reasons. Evidence from research and practice supports the idea that enhancing access to diagnosis can result in substantial improvements in quality of life and more competent forms of service-provision and mental health treatment. This is particularly true for individuals receiving diagnosis later in life, who may have managed to discover coping strategies and other adaptive mechanisms which serve to mask traits of ASD prior to a diagnosis. Frequently, individuals who are diagnosed in adolescence or adulthood report that receiving a diagnosis results in improvements in the provision of existing services and mental health treatment, a conceptual framework that helps explain past experiences, greater self-understanding and informal support as well as an awareness of additional, previously unknown service options.

Some have criticized the idea of maintaining the existing, broad autism spectrum, stating that doing so takes limited resources away from those most in need. We contend that this is a misleading argument – no publicly funded resource is accessible to autistic adults and children solely on the basis of a diagnosis. Furthermore, while the fact that an individual has a diagnosis of autism spectrum disorder does not in and of itself provide access to any type of service-provision or funding, a diagnosis can be a useful contributing factor in assisting those who meet other functional eligibility criteria in accessing necessary supports, reasonable accommodations and legal protections. As such, we encourage the DSM-5 Neurodevelopmental Disorders Working Group to interpret the definition of autism spectrum disorder broadly, so as to ensure that all of those who can benefit from an ASD diagnosis have the ability to do so.

The Autism Society and Autistic Self Advocacy Network encourage other organizations and groups to join with us in forming a national coalition aimed at working on issues related to definition of the autism spectrum within the DSM-5. Community engagement and representation within the DSM-5 process itself is a critical component of ensuring accurate, scientific and research-validated diagnostic criteria. Furthermore, our community must work both before and after the finalization of the DSM-5 to conduct effective outreach and training on how to appropriately identify and diagnose all those on the autism spectrum, regardless of age, background or status in other under-represented groups.

P.S. The Autism Society will continue to share its thoughts and feelings about keeping the community inclusive as more information about the revisions is known. In the meantime, we strongly encourage people to get involved in the discussion.

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