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Autism Science Foundation Partnering with UJA-Federation to Launch Three Surveys Designed to Identify Services and Needs for Adults with Autism

Date Published: 
OCTOBER 11, 2012
Abstract: 

Autism Science Foundation and UJA-Federation of New York announced today the launch of a series of surveys designed to determine which types of services for adults with autism are most needed in the New York metropolitan area. The surveys are being administered by the Autism Science Foundation and the Interactive Autism Network (IAN).

The New Surveys — Conducted on behalf of UJA-Federation by the Autism Science Foundation and the Interactive Autism Network — Aim to Help Service Providers Expand Programs That Support All Those Affected by Autism

(OCTOBER 11, 2012—New York, NY) UJA-Federation of New York announced today the launch of a series of surveys designed to determine which types of services for adults with autism are most needed in the New York metropolitan area. The surveys are being administered by the Autism Science Foundation and the Interactive Autism Network (IAN).

The three surveys target individuals with autism ages 18 to 35; parents of individuals with autism ages 18 to 35 who are independent; and parents of individuals with autism ages 18 to 35 who are under their parents’ guardianship. People fitting one of these three groups are invited to participate by registering at the Interactive Autism Network (IAN) and completing the “UJA-Federation Adult with Autism Spectrum Disorder (ASD) Survey.”

“The goal of this project is to identify the drivers of fulfillment and success for autistic adults in the areas of employment, leisure activities, and spirituality,” said Deborah Hilibrand, a member of UJA-Federation of New York’s Autism Task Force. “We will then use this information to help UJA-Federation and other agencies provide these critical activities by providing financial support for projects that deliver these services.”

“We also want to use the data to enhance public awareness about the critical issues facing adults with autism and their families by broadly disseminating the results of this survey,” said Alison Singer, president of the Autism Science Foundation.

The free survey is designed to be completed entirely online. Surveys must be completed by Friday, November 30, 2012. All responses and data collected will be kept anonymous and confidential. Participants in this survey do not have to be Jewish or receive services from UJA-Federation, and people of all faiths are welcome.

Eligibility to participate in the UJA-Federation Adult with ASD Survey includes:

  • Residency in the five boroughs of New York City, Long Island, or Westchester.
  • An adult with ASD who is independent and is not under anyone’s legal guardianship.
  • The parent of an independent adult with ASD (for example, one’s adult son or daughter with ASD is not under legal guardianship and maintains the right to make their own medical and legal decisions).
  • The legally authorized representative of a dependent adult with ASD (for example, you may have legal guardianship or medical power of attorney for the adult with ASD).

“This project is especially exciting because the information collected will not only have an immediate effect on improving services for adults with autism, but it will also advance autism research involving adults — a group that is sorely underrepresented,” said Dr. Paul Law, director of the Interactive Autism Network at Kennedy Krieger Institute. “I believe that community service providers like UJA-Federation of New York are key to ensuring greater involvement of adults with autism in research.”

Additional funding for this project was provided by the Hilibrand Foundation and the FAR Fund. The survey can be found by visiting http://orca.kennedykrieger.org/index.php?sid=86954&newtest=Y&lang=en

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Contact: Roberta Lee, UJA-Federation, 1.212.836.1800, leer@ujafedny.org

 

To begin registration and the survey, click on the link below:

http://orca.kennedykrieger.org/index.php?sid=86954&newtest=Y&lang=en

Using Large Clinical Data Sets to Infer Pathogenicity for Rare Copy Number Variants in Autism Cohorts

Source: 
Molecular Psychiatry
Date Published: 
October 9, 2012
Abstract: 

Copy number variants (CNVs) have a major role in the etiology of autism spectrum disorders (ASD), and several of these have reached statistical significance in case–control analyses. Nevertheless, current ASD cohorts are not large enough to detect very rare CNVs that may be causative or contributory (that is, risk alleles).

Unreliable Evoked Responses in Autism

Source: 
Neuron
Date Published: 
September 20, 2012
Abstract: 

This imaging study led by Carnegie Mellon researchers suggests adults with autism have unreliable neural responses when presented with basic sensory information.

University says findings could bring us closer to understanding the connection between brain and behavior in autism. See the press release here: http://www.cmu.edu/news/stories/archives/2012/september/sept19_autisticn...

SFARI Reviews Mouse Models Used in Autism Genetics Research

Source: 
Simons Foundation Autism Research Initiative
Date Published: 
September 25, 2012
Abstract: 

New genetic variants that increase susceptibility to autism are emerging at a rapid pace from scans for copy number variants (CNVs) — deletions or duplications of DNA segments — and next-generation sequencing. Given the profusion of data, it seems timely to assess the availability and usefulness of mouse models in which to study these genetic risk factors.

The Development of Referential Communication and Autism Symptomatology in High-Risk Infants

Source: 
Infancy
Date Published: 
October 1, 2012
Abstract: 

This study suggests that non-verbal communication delays in infants with autistic siblings can predict later ASD symptoms.

For a Science Daily article on this paper, click here: http://www.sciencedaily.com/releases/2012/10/121001124802.htm

Immunization Uptake in Younger Siblings of Children with Autism Spectrum Disorder.

Source: 
Autism
Date Published: 
October 8, 2012
Abstract: 

Study finds that parents who already have one child with autism spectrum disorder may delay or decline immunization for their younger children, potentially placing them at increased risk of preventable infectious diseases.

Background: Parental concerns persist that immunization increases the risk of autism spectrum disorder, resulting in the potential for reduced uptake by parents of younger siblings of children with autism spectrum disorder ("younger sibs").Objective: To compare immunization uptake by parents for their younger child relative to their older child with autism spectrum disorder ("proband") and controls.Design: Immunization status was obtained for 98 "younger sibs," 98 "probands," and 65 controls.Results: A significant group difference emerged for overall immunization status (Fisher's exact test = 62.70, p < .001). One or more immunizations in 59/98 younger sibs were delayed (47/98; 48%) or declined (12/98; 12.2%); immunizations were delayed in 16/98 probands (16.3%) and declined in only one. All controls were fully immunized, with only 6 (9.2%) delayed. Within the "younger sibs" group, 25/98 received an autism spectrum disorder diagnosis; 7 of whom (28%) were fully immunized. The rates of autism spectrum disorder diagnosis did not differ between immunized and nonimmunized younger sib groups, although small sample size limits interpretability of this result.Conclusion: Parents who already have one child with autism spectrum disorder may delay or decline immunization for their younger children, potentially placing them at increased risk of preventable infectious diseases.

Nearly Half of All Children with Autism Wander Off - Pediatrics Reports

Abstract: 

"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 ASF.

"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.

Full Study - http://pediatrics.aappublications.org/content/early/2012/10/02/peds.2012-0762.abstract?sid=0ccc0ad5-2fe7-4b75-80ce-7cb4a9011203.

Read coverage in USA Today and the New York Times.

 

View a webinar on wandering by Interactive Autism Network News:
 

Effects of a Brief Early Start Denver Model (ESDM)-Based Parent Intervention on Toddlers at Risk for Autism Spectrum Disorders: A Randomized Controlled Trial

Source: 
Journal of the American Academy of Child & Adolescent Psychiatry
Date Published: 
October 2012
Year Published: 
2012
Abstract: 

Contrary to their hypothesis, Sally Rogers and colleagues found that toddlers with ASD in a brief, parent-delivered ESDM program did not make greater gains or show reduced core ASD symptoms compared to autistic toddlers in a community ESDM program. Study strongly suggests number of intervention hours and younger age at initiation are key to maximizing intervention benefits, even for 1 and 2 year olds. Authors say, “the ‘wait and see’ approach to early ASD must be replaced by an ‘act now’ mentality.”

Application of DSM-5 Criteria for Autism Spectrum Disorder to Three Samples of Children With DSM-IV Diagnoses of Pervasive Developmental Disorders

Source: 
The American Journal of Psychiatry
Date Published: 
October 1, 2012
Year Published: 
2012
Abstract: 

Substantial revisions to the DSM-IV criteria for autism spectrum disorders (ASDs) have been proposed in efforts to increase diagnostic sensitivity and specificity. This study evaluated the proposed DSM-5 criteria for the single diagnostic category of autism spectrum disorder in children with DSM-IV diagnoses of pervasive developmental disorders (PDDs) and non-PDD diagnoses.

ASF's Brain Tissue Donation Awareness Campaign Featured in Disability Scoop

Source: 
Disability Scoop
Date Published: 
October 2, 2012
Abstract: 

After many of the world’s brain samples available for autism research were lost earlier this year, a new effort is underway to increase tissue donation from those with the disorder.