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Archive for the ‘autism research’ Category

AUTISM SCIENCE FOUNDATION and DANCE2BFIT

HOST ZUMBA MANIA on APRIL 6, 2013

Get Fit! Feel Fab! Raise Funds!

(April 1, 2013—New York, NY)  The Autism Science Foundation (ASF) and Dance2BFit will host their first annual Zumba Mania, a fun and fun-draising event for families and individuals affected by autism, on April 6, 2013 at Dance2BFit Studios in Mamaroneck.

The event will raise money to fund research to find the causes of autism and develop better treatments for children, teens and adults with autism. 1 in 88 children is currently diagnosed with an autism spectrum disorder, making it more common than childhood cancer, juvenile diabetes and pediatric AIDS combined.

Zumba Mania will run from 12:30pm – 3:30pm at Dance2BFit at 656 Van Ranst Place, Mamaroneck, NY.  Dance2BFit owner/instructor Gustavo Lopez, a Mamaroneck native and MHS graduate, will lead the zumba-ing. Dancers 12 and over, of all developmental and skill levels, are welcome to participate.

“Let’s face it; it’s stressful being the parent of a child with autism and zumba is a fabulous stress reliever,” said Alison Singer, president of the Autism Science Foundation. “Gustavo is the best instructor I’ve ever met. It’s just impossible not to be happy when you’re doing zumba with Gustavo.”

“Everyone can zumba,” said Lopez, who became a certified zumba instructor in 2009 and opened Dance2BFit in 2012. “Whatever your age, fitness level, or developmental level, zumba is a great workout and has great health benefits.”

Tickets are $25 and available online at http://asfzumbamania.eventbrite.com/. All advance ticket buyers will receive a free water bottle or size large t-shirt at the door. Tickets can be purchased at the door, space permitting.

Zumba is a dance fitness program created by Colombian dancer/choreographer Albert Perez. It involves dance and aerobic elements and incorporates hip-hop, samba, salsa, mambo and other dance moves.  According to Wikipedia, approximately 14 million people take weekly Zumba classes in over 140,000 locations across more than 150 countries.

100% of the proceeds from this event will benefit the Autism Science Foundation, a 501(c)(3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism. ASF was founded by Scarsdale resident Alison Singer, who currently serves as president and Chief Zumba Officer.

To learn more about the Autism Science Foundation’s programs visit www.autismsciencefoundation.org.

 

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Contact Information:

Casey Gold
Program Associate
Autism Science Foundation
212 391-3913
cgold@autismsciencefoundation.org

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By Matt Carey

A recent effort supported by the Autism Science Foundation sought to gather information on the status and needs of adult autistics. The UJA Adult with ASD Survey used an online survey as part of the Interactive Autism Network (IAN). The survey collection ended December 31st of 2012, but shortly afterwards the results of another IAN based survey were published by a team from Johns Hopkins and the Kennedy Krieger Institute. The paper, The association between bullying and the psychological functioning of children with autism spectrum disorders, was based on a survey of parents of school aged autistic children. This appears to be the same study whose preliminary results were released last year as IAN Research Report: Bullying and Children with ASD. I’ll work from the abstract (below) and the IAN preliminary report both as they are publicly available. And, since the IAN preliminary report is so accessible, I won’t go into great detail here.

The results are not surprising: autistics are bullied more often. While this may not come as a shock, having this data is the first step to effecting change. And, yes, autistics can play the role of the bully, but often with different motivations than their non-autistic peers. This figure from the preliminary report says a great deal: a much higher (about 3x more) percentage of autistics were bullied.

BulliedPastMonthComparison

Those with Asperger syndrome were reported as being bullied more often than those with other ASD diagnoses. The preliminary report also lists behaviors and traits that increased the likelihood of bullying:

•Clumsiness
•Poor hygiene
•Rigid rule keeping (enforcing adults’ rules when other children would not)
•Continuing to talk about a favorite topic even when others are bored or annoyed
•Frequent meltdowns
•Inflexibility or rigidity

Sadly, one group that was frequently bullied was children with ASD who wanted to interact with other children, but had a hard time making friends. Of these, 57% were bullied, compared to only 25% of children who prefer to play alone and 34% of children who will play, but only if approached. The one slightly bright spot was that children who had learned to make friends successfully were bullied at a lower rate: 34%.

While autistics bully more often than their non-autistic peers, they mostly play the role of “bully-victims”. From the preliminary report: Unlike victims who are more passive, bully-victims insult their tormentors or otherwise try to fight back in a way that only makes the situation worse.

Again, IAN has an excellent discussion of this study. It is worth noting that a study creates awareness in the research community and provides the type of data from which questions can be formed. Just as we can hope that this study will spark further work, we can hope that the UJA Adult with ASD Survey will provide a basis for more work, and some solutions to the issues uncovered.

Here is the abstract for the published paper:

OBJECTIVE: : Bullying has become a major national concern, particularly as it affects children with disabilities. The current study aimed to determine the association between psychiatric comorbid conditions, involvement in bullying (victim, bully, or bully-victim), and the immediate psychological correlates of bullying among children with autism spectrum disorders (ASDs).

METHODS: : A national sample of 1221 parents completed a survey dedicated to the bullying and school experiences of their child with ASD, reporting on the immediate consequences of bullying involvement, including their child’s psychological well-being and any psychiatric comorbidity. Multivariate logistic regressions were performed to determine whether specific psychiatric comorbidities were associated with an increased risk of involvement as victim, bully, or bully-victim. Analyses of variance determined the relationship between bullying frequency and psychological functioning. All models adjusted for child and school covariates.

RESULTS: : Children who were frequently victimized were more likely to present with internalizing symptoms, whereas children who frequently bullied others were more likely to exhibit emotion regulation problems. Children who were identified as frequent bully-victims presented with both internalizing symptoms and emotion regulation problems. Children with attention-deficit hyperactivity disorder (ADHD) and depression were more likely to have been victimized, whereas children with conduct disorder (CD) or oppositional defiant disorder (ODD) were more likely to have bullied other children. Children identified as bully-victims were more likely to have ADHD, CD, or ODD.

CONCLUSIONS: : Children with ASDs who had displayed bullying behaviors in the past month exhibited psychological impairments, including psychiatric comorbidity. The frequency of bullying behaviors was significantly associated with the level of impairment.

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By Kadi Luchsinger

Kadi Luchsinger, selected by Autism Science Foundation as a 2012 IMFAR Travel Grantee, is a parent an 11 year old son with Dup15q Syndrome.

I was so pleased to have the opportunity to attend the International Meeting for Autism Research (IMFAR). I went with a mission: to meet as many people as I could and learn from them, but also to share my knowledge of Dup15q Syndrome. I’m pleased to say I accomplished my mission.

I spent a fair amount of my time at IMFAR reviewing the poster presentations. It was wonderful to see the young researchers’ excitement and to discuss their research. I wanted to know how they developed their hypothesis, how they were funded and what obstacles they encountered. It was enlightening for me to talk to those in the trenches and to gain a better understanding of the research world. As the Executive Director of Dup15q Alliance, gaining this understanding was important because our organization is moving in the direction of funding research. Speaking with some of the top experts in the field who are working on Dup15q related projects was also a priority to me.

As a science junkie, I enjoyed the keynote address by Dr. Feldman, entitled Bio-Behavioral Synchrony and the Development of Social Reciprocity. The details of her work and the videos were fascinating. She provided a great overview of the importance of relationships to children with autism, explaining it on a biochemical level. There were so many outstanding sessions, at times I felt information overload!

My favorite session was called Communicating Autism Science. The presenters focused on media training, working with the press and communicating with families. I learned about the importance of being prepared ahead of time for the press by developing three key points and practicing these points. This was a great session for me to attend as our organization is a volunteer-run parent organization and we do not have a staff to handle media relations.

In addition to research findings, I learned more about other organizations and the resources they offer in order to share resources with our members. Though I learned so much about the latest autism research, the best thing about IMFAR was meeting the leaders in the field of autism research. I made wonderful connections and learned so much from other attendees.

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By Matt Carey

A 2011 study in Pediatrics suggested that autism risk might be higher for siblings born within a few years of an older sibling, with the risk falling as the spacing between pregnancies increased (Closely spaced pregnancies are associated with increased odds of autism in California sibling births). This suggests prenatal environment would be involved in such a risk factor. In a study published on November 30, 2012 in PLoS One, researchers look at the characteristics of autistics born after a first sibling with autism. They look at measures of intelligence (both verbal and nonverbal), repetitive behaviors and social response. In The effects of birth order and birth interval on the phenotypic expression of autism spectrum disorder, researchers found that younger autistic siblings scored lower on these scales than their older autistic siblings. In other words, the challenges associated with autism tend to be higher for autistic younger siblings.

While the sample size for families with three autistic siblings was small, the trend seems to continue with a third sibling.

Here are results for the Ravens Colored Progressive Matrices, a test of nonverbal intelligence:

journal.pone.0051049.g002

The fraction of individuals who the researchers deemed “untestable” increased for younger siblings. Where about 20% of first autistic siblings were “untestable”, this increased to about 40% for second and third autistic siblings.

journal.pone.0051049.t001

Measures of motor skills (Vineland) were mostly the same for older and younger autistic siblings. Social measures (Social Responsiveness Scale) differed, but only when the age difference was under 2 years.

The authors give some discussion to what factors might be involved in these findings. While they acknowledge that social factors cannot be ruled out, this study, and the pediatrics paper before it, point to the prenatal environment as a possible avenue for environmental risk factor research.

Papers in PLoS are free to the public and this one can be found at The Effects of Birth Order and Birth Interval on the Phenotypic Expression of Autism Spectrum Disorder.

A rise in the prevalence of diagnosed cases of autism spectrum disorder (ASD) has been reported in several studies in recent years. While this rise in ASD prevalence is at least partially related to increased awareness and broadened diagnostic criteria, the role of environmental factors cannot be ruled out, especially considering that the cause of most cases of ASD remains unknown. The study of families with multiple affected children can provide clues about ASD etiology. While the majority of research on ASD multiplex families has focused on identifying genetic anomalies that may underlie the disorder, the study of symptom severity across ASD birth order may provide evidence for environmental factors in ASD. We compared social and cognitive measures of behavior between over 300 first and second affected siblings within multiplex autism families obtained from the Autism Genetic Resource Exchange dataset. Measures included nonverbal IQ assessed with the Ravens Colored Progressive Matrices, verbal IQ assessed with the Peabody Picture Vocabulary Test, and autism severity assessed with the Social Responsiveness Scale (SRS), an instrument established as a quantitative measure of autism. The results indicated that females were more severely impacted by ASD than males, especially first affected siblings. When first and second affected siblings were compared, significant declines in nonverbal and verbal IQ scores were observed. In addition, SRS results demonstrated a significant increase in autism severity between first and second affected siblings consistent with an overall decline in function as indicated by the IQ data. These results remained significant after controlling for the age and sex of the siblings. Surprisingly, the SRS scores were found to only be significant when the age difference between siblings was less than 2 years. These results suggest that some cases of ASD are influenced by a dosage effect involving unknown epigenetic, environmental, and/or immunological factors.

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by Jason Ross

Jason Ross is an Autistic adult working for the Autism Science Foundation. He has appeared on PBS’ “This Emotional Life” with Ami Klin. Jason blogs about neurodiversity, autistic rights, fiction, poetry, and artwork at www.drivemomcrazy.com.

As an adult with autism, I am encouraging Autistic people to step up and share their voices as we continue this journey to build a better community of inclusion. Part of building that community is developing and improving services for adults with autism, which is the ultimate goal of ASF and UJA’s Adult with ASD survey. Hopefully this survey will bring us closer to autism acceptance.

I decided to join this initiative and help Autism Science Foundation with this research project because many of my Autistic friends that I have spoken with either lack services or have none at all. Autistic adults need improved services to lead easier and more fulfilled lives.
We need improved services because:

  1. Services can build our strengths- we can use our strengths to build our lives!
  2. Services can help us get jobs- Autistics need jobs too. Better services will better prepare us for employment in the future!
  3. Services can help us communicate- we need improved services in order to communicate our thoughts and feelings especially since some people think we don’t have feelings or thoughts of our own!
  4. Services can help us live inclusively in society- although social skills classes are important, most classes don’t include everything we need to know.

Autistic people face many barriers in society. Please complete the survey to help lift them. You may be eligible for the survey if you are an adult with autism or a parent or caregiver of an adult with autism. If you aren’t eligible, recommend this survey to someone who can take it.  A barrier we have always faced is not being included in helping with research that affects us. The survey being administered now will help researchers understand what works best for us and what does not. Help us help researchers do the right thing. Be heard.

Please email me at jross@autismsciencefoundation.org if you have any questions.

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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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We are pleased to announced a two-year, $600,000 grant from the Simons Foundation to develop a multi-media campaign designed to increase awareness of the importance of brain tissue donation to further autism research.

“No effort is more important than raising awareness among families and scientists about the need for research on human brain tissue,” said Dr. Gerald Fischbach, Director of the Simons Foundation Autism Research Initiative.

Brain tissue research is critical for developing effective prevention and treatment options for autism but research in this area has lagged because of lack of tissue.

“In every area of medicine,” said Dr. Thomas Insel, Director of the National Institute of Mental Health, “new diagnostics and new treatments have come from studying the affected organ.  In autism, we have been challenged by trying to understand a complex neurodevelopmental disorder without having enough brain tissue available for study. In so many ways, our ability to deliver for families with autism depends on the success of this effort.”

ASF President Alison Singer will serve as principal investigator on the project. Prior to founding the Autism Science Foundation, Singer served as Executive Vice President for Communications and Awareness at Autism Speaks, where she developed and co-produced the award-winning “The Odds” autism awareness campaign in conjunction with the Ad Council.

To learn more about this issue, read Alison Singer’s post on the Simons Foundation blog about the case for brain tissue donation.

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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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