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“Occurrence and Family Impact of Elopement in Children with Autism Spectrum Disorders,” was published today in the November 2012 issue of Pediatrics (published online Oct. 8). The study was conducted by the Interactive Autism Network at Kennedy Krieger Institute and indicates that half of children with autism wander away from safe environments.  The study was funded by a coalition of autism advocacy organizations led by the Autism Science Foundation.

Researchers surveyed 1,367 families with children between the ages of 4 and 17 who had been diagnosed with ASD. Nearly half – 598, or 49 percent – of the families reported that their child had attempted to elope at least once after age 4. Of those, 316 children went missing long enough to cause concern.

Greater autism severity was associated with increased elopement risk. Children eloped most commonly from their home, a store, classroom or school. Nearly half of parents said their child’s elopement was focused on an intent to go somewhere or do something, versus being confused or lost. Close calls with calamities like traffic injury or drowning are frequent, with police called in more than a third of cases.

Of parents whose children had eloped, 43 percent said the issue had prevented family members from getting a good night’s sleep, and 62 percent said their concerns had prevented family from attending or enjoying activities outside the home. For 56 percent of parents, elopement was one of the most stressful behaviors they had to cope with as caregivers of a child with ASD, and half said they received no guidance from anyone on preventing or addressing this behavior.

Read the full study here. 

Read coverage in USA Today and the New York Times.

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By Dr. Paul El-Fishawy

Researchers at Yale and the University of California San Diego have discovered a new, likely rare, recessively inherited form of classic autism with epilepsy.  Simultaneous errors in the genetic code of both the maternally and paternally inherited copies of a single gene, BCKDK, cause the disorder.  The protein created by BCKDK acts as a brake on the body’s degradation of 3 amino acids (the branched chain amino acids).  These nutrients, present in dietary protein, cannot be synthesized by the body but must be ingested.  In patients with this form of autism, blood levels of these amino acids are significantly lower than normal, despite normal levels of other amino acids and adequate nutrition.  Mice with the same genetic abnormality have neurological deficits that can be ameliorated by supplementing their diet with branched chain amino acids.  This suggests the possibility that patients with this specific, likely rare disorder could benefit from supplementation and that autism could be potentially be prevented in infants with this disease.

However, it is critical to note that so far cases of this disorder have only been found in only three, rare families in the Middle East where the parents are related as first cousins.  To date, no cases of autism in out-bred families in the United States or other Western countries have been shown to be attributable to this genetic defect.  Thus, the discovery should not lead to the immediate alteration of current practices of diagnosis and treatment of patients in countries like the United States where cousin marriages are uncommon.  There is no evidence from this study that supplementing autistic patients without this specific disorder with branched chain amino acids would be of any benefit.

We do not know how low levels of branched chain amino acids are causing autism in the patients.  The importance of the finding is that it reveals a new biological pathway and a new biological marker.  The hope is that further scientific exploration of this pathway could lead to improved diagnosis and treatments not only for patients with this specific disorder but also for other autistic patients.

One hypothesis about how low branched chain amino acids could be causing autism in these patients is that they could be leading to altered levels of neurotransmitters in the brain.  The branched chain amino acids and other amino acids that compete with them for entry from the blood into the brain are key building blocks for the neurotransmitters glutamate, GABA, dopamine, and serotonin.

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By Dr. Meghan Swanson
Meghan Swanson is a Postdoctoral Fellow at the Communication & Play Laboratory at Hunter College, City University of New York

Of all the scientific/academic conferences that I’ve attended, the International Meeting for Autism Research is by far my favorite. So I was thrilled when the Autism Science Foundation selected me as an IMFAR Travel Grantee. With ASF’s generous support I traveled to IMFAR 2012 in Toronto from May 17th to 19th and these are my experiences:

The weeks and months prior to IMFAR I had my nose in the books and fingers on the keyboard preparing for my dissertation defense. On April 18th I defended my dissertation and my degree was officially awarded on April 26th. So for many reasons this year’s IMFAR meeting was different for me.  This year I attended as a newly minted Ph.D., attempting to make the transition from student to colleague.

Since I was presenting my own research on Thursday, much of the day was spent preparing and standing by my poster. Presenting posters can be such a valuable learning experience. Every year I have the “why didn’t I think of that?” moment and am so appreciative of everyone’s thoughts and enthusiasm. Recently, the study I presented at IMFAR was accepted for publication in the Journal of Autism and Developmental Delays. Click here if you’d like to read it (email mswanson@gc.cuny.edu if you would like me to email you a PDF): .

On Friday, I found myself inspired by Bernie Devlin’s talk on gene discovery. He masterfully put into picture how far we have come as a field and what the future has in store for us. Friday morning I was also able to catch a talk by the prolific Charles Nelson (Bucharest Early Intervention Project). In his talk he discussed the difficulties of doing research with baby siblings of children with autism. On average 1 in 5 of these baby siblings go on to have ASD, so if we look for endophenotypes (subclinical traits associated with autism) in these populations we may be identifying endophenotypes for “risk” of autism rather than endophenotypes for autism itself. He also spoke about a research study where he showed infants pictures of their mothers and strangers. He found that high risk infants (baby siblings) and low risk infants didn’t show the same brain patterns in response to the pictures.

In the Friday afternoon oral presentations on early developmental processes and trajectories I attended what I think was the “coolest” talk of the conference. This talk by J.D. Jones, Ami Klin, and Warren Jones introduced a new approach to analyzing eye-tracking data. The approach quantifies allocation of visual resources and used “kernel density analysis at each moment in time in TD children to create a continuously changing map of normative salience in relation to movie-content” (from abstract). As an eye-tracking researcher myself, I was fascinated by this new approach and taken aback by the ingenuity and creativity on the part of this research group.

On Saturday I saw a talk by James McPartland during the Electrophysiology oral presentations. He presented a study where he cleverly collected ERP and EEG data in a single paradigm. Participants also completed the Autism Quotient and the Reading the Mind in the Eyes Task (both are measures of the broad autism phenotype). His data analysis utilized Bayesian structural equation modeling and linked traits to behavior to brain!

On Saturday afternoon I found myself in an Educational Symposium presentation by Dr. Cathy Lord. Dr. Lord presented research that highlighted the disparity is services found across different ethnic groups. She noted that a study from 20 years ago found that African American families were receiving 10 times fewer services when compared to white families. There was also an interaction with maternal education, with low-educated African American families receiving fewer services than African American families’ higher education attainment. On a sobering note, she indicated that this gap in services was at its greatest 7 years ago, but then the gap shrank for 2 years, only to remain stable for the last 5 years. For me this talk was the perfect way to wrap up my IMFAR 2012 experience. It served as a worthy reminder that as an autism researcher my number one priority has to be the families that I serve!

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Today we opened our applications process for the 2013 Pre- and Post-doctoral Training Awards for graduate students, medical students and postdoctoral fellows interested in pursuing careers in basic and clinical research relevant to autism spectrum disorders. In the past three years, ASF has funded over $700,000 in pre- and post-doctoral grants.

“Pre- and post-doctoral fellowships not only build our knowledge about what causes autism and how best to treat it, but also build our future by encouraging outstanding young investigators to dedicate their careers to autism research,” said Alison Singer, president of ASF.

“We are so grateful to all our donors and volunteers who have come together to support autism research and who make these grants possible,” said Karen London, co-founder of ASF.

The proposed training must be scientifically linked to autism. ASF will consider for training purposes all areas of related basic and clinical research including but not limited to:

  • Human behavior across the lifespan (language, learning, communication, social function, epilepsy, sleep, repetitive disorders)
  • Neurobiology (anatomy, development, neuro-imaging)
  • Pharmacology
  • Neuropathology
  • Human genetics/genomics
  • Immunology
  • Molecular and cellular mechanisms
  • Studies employing model organisms and systems
  • Studies of treatment and service delivery

Applications must be received by November 16, 2012. Additional information about the RFA can be found at www.autismsciencefoundation.org/ApplyForaGrant.html.

Grant applications will be reviewed by members of ASF’s Science Advisory Board (SAB) and other highly qualified reviewers. Current SAB members include Dr. Joseph Buxbaum (Mt. Sinai School of Medicine); Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School); Dr. Sharon Humiston (University of Rochester); Dr. Bryan King (University of Washington, Seattle); Dr. Ami Klin (Emory University); Dr. Harold Koplewicz (The Child Mind Institute); Dr. Eric London (New York Institute for Basic Research); Dr. Catherine Lord (New York Center for Autism and the Developing Brain); Dr. David Mandell (University of Pennsylvania/CHOP); Dr. Kevin Pelphrey (Yale Child Study Center) and Dr. Matthew State (Yale Medical School).

To learn more about the ASF’s grant programs, and to read about projects funded through this mechanism in prior years, visit www.autismsciencefoundation.org

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This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

Photo Credit: Eddie~S

Bullying is something that has been around as long as adolescents have been in close proximity to each other.  Whether your children are in large schools or small schools, bullying exists.  With the recent report that ASD children are three times more likely to be bullied than their unaffected siblings, the impact of bullying has taken on a special urgency in my home. (more…)

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Today we are pleased to announce an exciting new partnership with UJA-Federation of New York, an organization dedicated to strengthening the Jewish people and inspiring a passion for Jewish life and learning. We will be working together to launch a survey of the services needs of young adults with autism in the New York metropolitan area. The announcement was made by Travis Epes, chair of UJA-Federation’s Autism Committee, at today’s fifth annual UJA-Federation of New York Hilibrand Autism Symposium.

ASF and UJA-Federation will work with the Interactive Autism Network (IAN) at the Kennedy Krieger Institute at Johns Hopkins University to design and implement the survey.

The survey will gather data from three groups; independent adults 18-35 with autism, parents of independent adults with autism, and parents of adults with autism under guardianship. The goal is to learn more about what leads individuals with autism to have a meaningfully engaged day.  The survey will include questions about employment, leisure, and participation in spiritual activities.

“We want to learn specific information about the drivers of success, so that UJA-Federation and other philanthropic organizations can provide financial support to those types of activities, thus ensuring that the programs that lead to success become more widely available” said Epes.

The surveys are expected to be released in September.  To participate or to receive updates about this project, email contactus@autismsciencefoundation.org, indicating which of the three survey groups best describes your family situation.

Additional support for this project has been provided by the FAR Fund (www.farfund.org).

More About UJA-Federation of New York
For more than 90 years, UJA-Federation has been a central force for communal planning and philanthropy in the New York Jewish community. Through UJA-Federation, more than 60,000 donors pool their resources to help people in need, inspire a passion for Jewish life and learning, and strengthen Jewish communities around the world — to address the issues that matter to us most as Jews and as New Yorkers, such as helping those affected by autism. Working with more than 100 network beneficiary agencies, synagogues, and other Jewish organizations, our reach spans from New York to Israel to more than 60 other countries around the world, touching 4.5 million people each year. Because we do the most good when we do it together. For more information, please visit our website at www.ujafedny.org.

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This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

Me: Jared, do you like to be hugged?

Jared: I don’t know.  Kind of.

Me: How does the hug make you feel?

Jared: Pretty happy, bye.

Then he hung up on me.  Such is the life of the mother of an autistic child.  It is so hard to get a conversation out of him, much less a phone conversation with its inherent lack of visual cues and persistently following him around the room.  Jared is also a teenager who wants to do his own thing.

The reason I asked Jared these questions is because a new study out of the Yale Child Study Center by Martha Kaiser (no relation) indicates that individuals with autistic traits may not process hugs as socially rewarding.  Specifically, two areas of the brain, the STS (superior temporal sulcus) and the OFC (orbitofrontal cortex), were found not to be stimulated during slow, light brushes with a watercolor brush.

In my own experience with my son Jared, I remember the day he was born when the nurse placed him in my arms.  I tried to initiate breastfeeding but Jared turned away.  I noticed then that whenever I stroked his cheek like the books said to stimulate the nursing instinct in your baby that my son turned the opposite direction.  I thought I was doing it wrong and I visited with several lactation consultants.  Nothing worked and finally my milk dried up at 12 weeks because Jared just didn’t get the sucking down properly.  I even pumped and used a crooked syringe designed to teach babies how to breastfeed, but nothing worked.  I was so immensely disappointed in myself and felt like a failure as a mother.  The unkind comments of disapproving moms at the mall when I pulled out Jared’s formula bottle added to that pain.  It is amazing how cruel people can be when they don’t know the situation.  To this day I feel like crying when I remember one woman saying “you do know that breast is best” as she shook her head at me.

What I came to realize years later is that not only did Jared have difficulty in the muscle movements needed to suck efficiently, he also did not crave that physical touch that my later born children did.  My three younger children would gently caress my arm, neck or chest area as they nursed and they would squeeze me with their other hand.  It was so enjoyable.  They also curled their body around mine as if we were still attached.  The only time Jared did that as a young infant and child was when he was terrified of something.

In fact, to this day Jared only seems to crave physical contact when he is in distress, such as when he has had a “bad moment” at school or the group home where he now lives or when he has been hospitalized for behavioral problems.  It is bittersweet that I can only get that bonding from him when he is in distress but I tell myself at least he needs me.

Recently Jared called me late at night from his group home, crying hysterically.  He had an altercation with another client at the group home, which is about an hour away from our home, and he wanted me to make him feel better.  I spoke to him in soothing tones over the phone, my heart breaking because I was not beside him to comfort him, and he slowly calmed down.  We did a visualization technique I learned from the book “When My Autism Gets Too Big.”  I guided him through deep breaths and encouraged him to close his eyes and rub his upper legs slowly as we both visualized the creek in Vail, Colorado or the beach at Martha’s Vineyard, two of our favorite vacation stays.

Then Jared asked sadly “Who is going to hug me?”  It was a remarkable thing for him to ask.  My heart was so broken by this point, but I said into the phone “I am, right now.  Wrap your arms around yourself and know that it is me.  I am coming through this phone to hug you right now.”

“Can you read me a story?” he then asked.  “Yes,” I said.  Then I recited “Good Night Moon” from memory and my son fell asleep.  Sometimes a virtual hug is all I can give my son, late at night and so far away.  Our journey with autism is not at all an easy one.  I take comfort in the fact that Jared does now ask for the occasional hug and every now and then tells me he loves me, maybe not always with words but actions.

The research may indicate there is no social reward but personally I feel the results of the study indicate a different way of expressing and processing the social reward.  Scientists just haven’t decoded the autistic brain’s response to social stimuli yet.  Different does not mean absent.

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This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

Photo credit: MNicoleM

Is the rise in the rate of autism primarily a result of successful awareness campaigns?

That was my first thought when I read the Centers for Disease Control’s new prevalence report released last week.  With 1 in 88 children now being diagnosed on the autism spectrum, the urgency to find out why there is a 78% increase in the rise of autism diagnoses from 2002 and 23% since 2006, has never been stronger.

But with increased urgency we must avoid haphazard jumps to conclusion.  This is a 55% increase in diagnoses within only 4 years (from 2002-2006), which to my skeptical eye points to better awareness rather than an acute environmental change. However, it is only through a careful sifting of scientific evidence that we can truly surmise the cause(s) of the dramatic increase – a process which takes time. (more…)

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