Reflections from IMFAR Travel Grantees: Day 3

The ASF Travel Grantees have been tasked with sharing some of the most interesting tidbits from the 2012 IMFAR Conference. This is the knowledge gained from day 3.

Meagan Thompson – Saturday Keynote: In this morning’s keynote address, Dr. Evans presented data on longitudinal brain imaging data from birth through childhood. His presentation included videos demonstrating the dramatic brain growth in early life. Furthermore, he presented data on the relationships between physical brain measures (cortical thickness) in areas belonging to functional networks (e.g. The dorsal or ventral streams), finding that areas hypothesized to be functionally related were correlated on measures of physical characteristics. Data on individuals with ASD identified changes in regional efficiency and diminished long-range connectivity. Future work focusing on these types of network analyses is needed to better understand the implications of changes to these networks.

More to come…

Reactions from IMFAR Travel Grantees: Day 2

The ASF Travel Grantees have been tasked with sharing some of the most interesting tidbits from the 2012 IMFAR Conference. This is the knowledge gained from day 2.

Marjorie Madfis – Thursday Keynote:

• Geneticist Bernie Devlin said we will see an exponentially increase in genes and more potential drug treatments in the next few years due to pooling data and increase in funding of research. Collaborating and data sharing is critical to speed up research and discoveries.
• Per Tom Insel researchers need to NDAR.

Melissa Shimek – Smooth Sailing Charting Successful Transitions in the Early School Years: Although, I am personally more interested in brain imaging, genetics, and phenotypes – I can not miss a session like this when I am currently moving my two daughters from early intervention in preschool to new interventions in kindergarten. Something almost emotional about the session was the review of STR student teacher relationships. I have had a horrible time with a teacher who either doesn’t know how to teach/relate to a child with ASDs or simply doesn’t want to be bothered. I can see the effect of this in my children. And, I hope it hasn’t caused further delays or damage. All educators need to be informed not just out of regular classrooms.

Meghan Swanson – Oral Session: Brain Imaging: fMRI cognition, motion perception…: Brain responses (in response to viewing biological motion), in conjunction with a relatively simple behavioral measure (SRS), provides very high diagnostic accuracy (sensitivity of 93%).

Deb Dunn – Stakeholder Luncheon: In today’s stakeholder luncheon, Marjorie Solomon discussed friendship in adolescence. She and her colleagues have studied friendship dyads. She compared friendship pairs — a child with ASD and a friend compared to two typically developing children who are friends. Friendships in the dyad with an individual with ASD were less intimate and there was less postive affect/joking around, but these friendships were much more egalitarian. Also, the friends of individuals with ASD ranked the friendship as higher quality than the friends in the typical dyad. Predictors of good friendships with ASD include good theory of mind, language skills, and abstract reasoning ability.

Beth Malow during Stakeholder’s luncheon: If a child is having sleep issues, a medical evaluation should rule out apnea, seizures, and GI problems. Behavioral interventions should always be a first step. Some children may also benefit from melatonin in addition to behavioral treatment. In general, families should make sure the melatonin is indeed melatonin (and doesn’t have Benadryl mixed in!), and should use a small dose (1-3 mg), 30 minutes before bed.

Mark Shen – Thoughts from Friday: David Amaral, Cyndi Schumann, Dan Geschwind, Gene Blatt, and Jill James presented findings from brain tissue studies, and they emphasized the urgent need for more brain donations. While acknowledging the emotional and difficult decision that a parent faces whether to donate their child’s brain who may have passed away unexpectedly, the scientists stressed that examining the cellular and molecular changes in postmortem brain tissue is the only way we will truly understand the brain pathology and its causes in ASD.

Two important luncheons took place today. The INSAR Community Advisory Committee organized speakers for an audience of ASD stakeholders, family members, and individuals with ASD. Beth Malow talked about sleep problems and effective treatments, Marjorie Solomon spoke about the importance of friendships in adolescents with ASD and how to help facilitate them, Sue Swedo gave a compassionate and well-received talk on the new DSM5 diagnostic criteria, and Matthew Goodwin spoke about new technologies that help improve the lives of individuals with ASD. I felt very fortunate to help organize this important event with Peter Bell (Autism Speaks), Alison Singer (ASF), and the rest of the INSAR Community Advisory Committee. It was extremely gratifying to help bring autism science to the stakeholder community, who are the ultimate beneficiaries of the research we conduct.

The INSAR Student Committee, which I am honored to co-Chair, organized the Student Meet-the-Experts Luncheon where 15 senior autism scientists shared insights about their research, shared experiences from their career path, and offered advice on how to build a successful research career. The autism experts included: Simon Baron-Cohen, Bernie Devlin, Eric Fombonne, Daniel Geschwind, Connie Kasari, Ami Klin, David Mandell, Jamie McPartland, Nancy Minshew, Laurent Mottron, Charles Nelson, Laura Schreibman, Bob Schultz, Peter Szatmari, and Lonnie Zwaigenbaum. The luncheon was attended by 150 graduate students and post-doctoral scholars who represent the next generation of autism scientists.”

Meagan Thompson – Early Developmental Processes and Trajectories in ASD: Infant and Toddler Studies: In the Friday afternoon session entitled, “Early Developmental Processes and Trajectories in ASD: Infant and Toddler Studies”, Dr. Todd presented data on some attentional patterns of young children with ASD. Specifically, when watching shapes in the center of the screen, young children with ASD were just as likely as typically developing  children to disengage thir attention from these shapes and look towards a non-social stimulus that appeared on the side of the screen. In contrast to the typically developing children, young children with ASD were less likely to disengage their attention from the shapes in the middle of the screen when the stimuli that appeared on the side of the screen was social in nature.

Meghan Swanson – Thursday Keynote address: The momentum for gene discovery in ASD is high and due to pooling of data and increased funding. But, 5 years from now gene discovery is ASD will be passé: translation will be the key feature of ASD research.

Kadi Luchsinger – Postmortem Human Brain Research on Autism: I learned about the BEARS program at the MIND Institute. They have put together a wonderful video on the importance of brain donation, which is on their website. Very well done.

Meghan Swanson – Invited Educational Symposium 125: Biology-based Classification and Prediction in ASD: Promises and Pitfalls: Difficulty with doing research in high risk infants is that only 1 in 5 will go on to be diagnosed with ASD. So if endophenotypes are identified, the endophenotype may represent a risk for ASD and not ASD itself.

Kadi Luchsinger – Exhibit Hall: I learned about Lineagen, a company that offers cheek swabs for children who may be on the spectrum. They provide a full genetic array and provide support with their genetic counselors on staff.

Meghan Swanson – Oral Session: Stakeholder:

• 1 in 5 high risk sibs from the infant-sib studies went on to have a diagnose with ASD
• high risk children (who did not go on to get a dx) scored higher on the ADOS and lower on the Mullen when compared to low risk children (49% of low risk, and 35% of high risk where in the “class” with high DQ and low ADOS severity).
• 2/3 of high risk siblings appear to be developing typically in terms of DQ and ADOS severity. The other 1/3 have either lower developmental functioning, higher ASD severity, or both.

Deb Dunn – Session 127: Pittsburgh study of children with high functioning ASD: Children are using visual strategies to remember verbal information. Using fMRI, researchers found increased activation in the inferior frontal gyrus, which is associated with visual processing, instead of areas of the brain typically associated with language (angular gyrus and middle temporal gyrus). Using the different region of the brain did not lessen the reaction time or accuracy of the children with HFA compared to typically developing comparison children. This lends to the belief that some children may develop compensatory strategies in verbal conditions.

 

Reactions from IMFAR Travel Grantees: Day 1

The 2012 ASF IMFAR Travel Grantees

The ASF Travel Grantees have been tasked with sharing some of the most interesting tidbits from the 2012 IMFAR Conference. This is the knowledge gained from day 1.

Kadi Luchsinger – Communicating Autism Research: Make sure you develop your communication plan with three key points and three supporting statements in a family friendly context. Remember the rule of threes.

Emily Willingham – Wiggins Phenotypic Profiles: Study comparing various endpoints for children with and without ASD and who had developmental disability and ASD. The bottom line was that they identified a lot of overlap in various parameters–including social responsiveness, co-morbidities, and some screening tool scores, suggesting an overlapping etiology.

Melissa Shimek – Ruth Feldman Presentation: I am interested in the emphasis findings on the effect of oxytocin in persons with ASD. I would like to think eventually therapies could include OT, but I have reservations when I consider the use of dopamine in individuals with Parkinson’s. And, if not dosed correctly individuals may experience psychosis. All considerations with the idea of the least harm is essential.

Eric Hogan – Smaller Trials, Treatment Factors: As a person starting Autistic Advancement, I was exposed to other cutting-edge job placement services for individuals with ASD through this conference.

Debra Dunn – Clinical Phenotype-Assessing Diagnostic Criteria: Predicting Developing Course of ASDs: Study from the Netherlands re-evaluated 170 adolescents who had been diagnosed with “high-functioning” ASD (avg IQ was greater than 90) during childhood. Of these, 26% no longer met DSM-IV criteria at 12-19 years old. The 26% were distinguished from those who remained on spectrum in that, as children, they had less pragmatic language difficulties, more social contact and less orientation problems. However, event though they no longer meet ASD criteria, 34% move to another psychiatric diagnosis.

Eric Hogan – Friendship in ASD through the Life Span: As a person with Asperger’s, I realized the researchers know what they are talking about, based upon my experiences.

Emily Willingham – Simon Baron-Cohen and Fetal Testosterone Levels: Looked at hormone profiles in amniocentesis samples, first from a small cohort and then from a larger collection of samples in a Danish databank. They were expecting to see elevated fetal testosterone levels in pregnancies that resulted in children who later received an autism diagnosis. Instead, they found elevated levels of all four hormones along the pathway from cholesterol to testosterone (starting with progesterone). They say repeatedly that these results will require replication for confirmation.

Melissa Shimek – Awards Ceremony: I felt especially engaged by two things during the awards ceremony. Being a mother of twin girls with ASDs, I definitely will look into more work by Susan Folstein. Also, it was fantastic to hear Temple Grandin call for more research on sensitivity issues. As a woman with ASD, I can personally say to any thoughts of socialization and communication are immediately trumped by something as simple as someone near me wearing too much scented powder or hearing the sound of a rustling paper bag. Any thoughts at all can be interrupted by such sensor issues. I can see the same happening when my daughter freezes, covers her ears, and shuts down in a large noisy crowd. I hope researchers listen.

Mark Shen – Thursday Keynote Dr. Ruth Feldman, Bar Ilan University: This morning’s keynote speaker, Dr. Ruth Feldman from Bar-Ilan University in Israel, demonstrated how administering oxytocin to a parent can increase emotional interactions, touch, gaze synchrony, and promote closer relationships and attachment between a parent and their infant. The infant’s own oxytocin levels increase and, in turn, the infant will reciprocate the positive interaction with the parent. Dr. Feldman discussed the promise of using oxytocin, which is benign and has no side effects, as a potential therapeutic intervention in ASD.

Emily Willingham – Teheri’s Talk Regarding DSM-IV vs V Comparisons: Various results reported in this brief talk, among them that no children currently diagnosed with ASD or PDD-NOS under IV criteria would meet all of DSM-V criteria. Only 20% would meet proposed criteria B2 and B3. Further, only 18% of children with current PDD-NOS diagnosis under DSMIV would receive ASD diagnosis under DSMV criteria. They also found an inverse correlation between IQ and meeting DSMV diagnostic criteria, with 90% of those with IQ less than 30 meeting DSM V but only 21% of those with IQ greater than 70 doing so. Finally, they found that the proposed criteria may “miss autistic symptoms in more capable children” or children with milder severity.

Eric Hogan – Cultural Diversity Networking Luncheon: I made excellent contacts with professionals from other countries who have similar goals, employing individuals with autism.

Marjorie Madfis – Observations from Thursday: Focus on social development of babies through adults. Friendship is a critical development to enable a person to be whole and functioning…from infancy with parents takes place, to school years where coaching can help to adult years where support is in greatest need.

Catherine Blackwell – Thoughts from Thursday -Well-known sex differences in autism call for research on developmental androgenic activity and a potential link to autism spectrum disorders. Fetal testosterone may cause differences in sociability and pattern detection. Baron-Cohen et al found fetal testosterone is inversely correlated with eye contact, social skills, vocabulary size, and empathy in later childhood. Subjects who later developed autism had elevated levels of 4 measured sex steroids compared to controls (Baron-Cohen). Hollier confirmed a negative effect of biologically active testosterone and language in males. Hollier did not find this effect in females, and actually noted the possibility of a protective effect of elevated fetal androgens, but this needs further data. Baron-Cohen noted the possibility that, “autism may be an extreme form of the male developmental profile.”

Better know an IMFAR Grantee – Melissa Shimek and Meagan Thompson

Melissa:

Blog: http://militiapennsylvania.blogspot.com/

Melissa Shimek is a recently diagnosed woman on the autism spectrum. She discovered her diagnosis as she sought information about a possible diagnosis for her twin daughters, who also have been diagnosed. As adjustments are made within her own life, Melissa finds it beneficial to share her experiences through a blog (http://militiapennsylvania.blogspot.com/) and by taking part in community outreach through support groups. She have contributed previously as a panelist during Autism Awareness events. Melissa has become a member of INSAR will share her findings at IMFAR 2012 with her community.

Meagan:

Meagan is a graduate student at Boston University, where she is working on the Infant Sibling Project, a collaborative investigation led by Dr. Helen Tager-Flusberg and Dr. Charles Nelson, which follows the infant siblings of children with autism from 6 through 36 months of age. Her current focus is on understanding the early language and social-communicative development of these infants, particularly in the context of parent-child interactions. Prior to her graduate work at Boston University, Meagan was involved in research at the UC Davis M.I.N.D. Institute, where she worked on several research projects related to early identification and development of infants with autism, primarily under the direction of Dr. Sally Ozonoff.

At IMFAR, Meagan will be presenting work on the relations between parents’ concerns and infants’ early language development. Her attendance at IMFAR will allow her to learn more about important new research, which she will share with other students and colleagues in the ROADD laboratory at Boston University.

Better know an IMFAR Grantee — Marjorie Madfis and Meagan Swanson

Marjorie

Twitter: @marjorie_m

Marjorie Madfis is the parent of a teenage girl with Autism Spectrum Disorder, a VP of the Pleasantville School District SEPTA, a member of Westchester County Advisory Council on Autism, a founder and member of the IBM employee Autism interest community, and a active social networker and advocate.

In 2001 Marjorie joined the inaugural Westchester/Fairfield walk committee for the National Alliance for Autism Research (NAAR) and also became a walk team captain. Isabelle’s Dream Team raised over $50,000 for NAAR.  In 2006 Marjorie was invited to join the NAAR leadership in Washington DC for its annual conference where the merger with Autism Speaks was finalized.  Along with other delegates from NY State, Marjorie met with Senator Clinton, Senator Schumer, and Representative Nita Lowey to lobby for several autism research bills.

Marjorie plans to fully participate in the conference, to blog and “tweet’ during the conference, and to share key findings with my extensive network of parents and professionals interested in understanding the disorder, learning about current research, and encouraging support of further research.

 

Meghan:

Meghan Swanson was recently awarded her Ph.D in Behavioral Neuroscience under the mentorship of Dr. Michael Siller, where she researched endophenotypes for autism spectrum disorder. She created an eye-tracking measure that utilized modern technology to evaluate how individuals allocated their visual attention while watching social video vignettes. Measures of this kind have the potential to inform family-wide genetic linkage studies and contribute to our understanding of the etiology of ASD.

Meghan has previously worked on Dr. Siller’s randomized treatment study testing the efficacy of a novel education program for parents of non-verbal preschoolers with ASD. Last March she has assisted Dr. Siller in planning and hosting a day-long round table hosted by the Hunter College Autism Center that focused on discussing the difficulties of delivering early intervention services to children at risk for autism in NYC.  Meghan looks forward to attending both the Autism Speaks Toddler Treatment Network conference and IMFAR to learn more about the barriers in implementing population wide screening for ASD. She plans on sharing her experiences with the Autism Center and Psychology Department at Hunter College, City University of New York.

Better Know an ASF IMFAR Travel Grantee — Debra Dunn and Jon Shestack

Click here to view a list of the 2012 ASF IMFAR Travel Grantees

 

Deb:

Twitter: @CARautism
Blog: http://www.centerforautismresearch.blogspot.com/.

Debra Dunn is the outreach director at the Center for Autism Research at The Children’s Hospital of Philadelphia, and she is the mother of a 15-year old son with Asperger Syndrome. As outreach director, Deb’s role is to recruit research participants and to translate the research being done at CAR and elsewhere into useable information for families and community providers serving children with ASD

As a litigation attorney turned full-time mom of a son with ASD, Deb initially focused on special education issues and helped other families navigate the special education process. She joined the Right to Education Task Force in my local county, a court-mandated organization designed to ensure special education students receive appropriate services, teachers and support staff have adequate training and resources, and collaborating organizations are utilized effectively. She helped found ASCEND, initially a support group for parents of children diagnosed with Asperger Syndrome, and later an organization which also supports professionals working with individuals with ASD. Deb also served on the board of the Greater Philadelphia Chapter of the Autism Society of America.

Deb plans to present a summary of some of the most interesting advances in autism research presented at IMFAR 2012 to at least one group of parents and professionals, in addition to sharing her experience at IMFAR with the professionals and parents on the autism boards and committees to which she belongs. Through her work and volunteer activities, she anticipate’s multiple opportunities to talk to a variety of stakeholders, including self-advocates, family members, teachers, administrators, and other community providers.

 

Jon:

Jon Shestack is the founder of Cure Autism Now (CAN) and is a board member of Autism Speaks. He has a son, Dov, diagnosed with autism. CAN became a driving force in growing the field autism research and a leader in raising awareness and funding. Soon after founding CAN, Jon helped establish the Autism Genetics Resource Exchange (AGRE), an autism gene bank that was the first to provide open access to the entire scientific community and soon grew to become the world’s largest. Jon also established CAN’s Scientific Review Council (SRC), an advisory council modeled after the NIMH Advisory Council, whose members were made up of scientists and clinicians most of whom were also parents of autistic children. The SRC was responsible for ensuring that the research which CAN funded was relevant and reflected the urgency of those affected by the disorder. Jon has been a tireless advocate for those with autism, and his attendance at IMFAR will only serve to further aid his awareness efforts.

 

Better Know an ASF IMFAR Travel Grantee — Eric Hogan and Karen Blackwell

Click here to view a list of the 2012 ASF IMFAR Travel Grantees

Eric:

Eric Hogan is an autism entrepreneur diagnosed with Asperger’s Syndrome. He has started Autistic Advancement, a self-advocacy organization with goals of promoting a cultural shift in the workplace and changing the rules by which people with autism get good jobs. Their website can be found here: www.autisticadvancement.org/news.

Eric is also setting up an IT staffing agency to employ adults with autism called AutVantage (www.autvantage.com). Eric also hopes to share what he learns with Autism groups such as TEAAM, ASAN, and Specialisterne.

Eric is attending this conference to network with others in the autism community, and to learn different viewpoints about autism.

 

Karen:

Twitter: @GreenOdonata

Karen Blackwell is an an undergraduate student at the University of Maryland, Baltimore County studying neuroscience intending to pursue a dual degree in neuroscience/neurology after a post-baccalaureate fellowship at the National Institutes of Health. Karen’s brother is diagnosed with autism and seizure disorder.

Karen has worked at diverse institutions related to the autism community, including the Howard County Autism Society, a local group that supports families and provides information, advocacy, and special programs for families affected by autism. She has contributed to bio-behavioral research at the Kennedy Krieger Institute, the Maryland Psychiatric Research Center, and the National Institutes of Mental Health. Karen’s mother serves on the Interagency Autism Coordinating Committee as a representative of the Centers for Medicare and Medicaid Services and policy analyst.

Better know an IMFAR Grantee!

Learn more about how ASF’s IMFAR Travel Grantees plan to take advantage of their IMFAR experience. First up, Kadi Luchsinger and Mark Shen:

Click here to view a list of the 2012 ASF IMFAR Travel Grantees

Kadi:

Kadi Luchsinger is the Executive Director of the Dup15q Alliance, which services families all over the world who have a child with Dup15q Syndrome. Duplication 15q Syndrome is the most common cytogenetic cause of autism. Many children with Dup15q have autism, seizures, anxiety, ADHD and global developmental delays.

Dup15q Alliance has recently launched an international registry and plans to use IMFAR  to let the research community know about this registry.

You can learn more about the Dup15q alliance on their website — dup15q.org

Mark:

Mark Shen is a PhD student in Cognitive Neuroscience under the mentorship of David Amaral, where he researches the early brain development and potential brain markers in infants at risk for autism and toddlers who have been diagnosed.  Mark is also an active participant in the autism community as a volunteer coach for the Special Olympics and as a founding member of the INSAR Community Advisory Committee.

Mark is also Chair of the INSAR Student Committee.  The Student Committee represents 400 INSAR student members (graduate students and postdocs), which comprise nearly 40% of  INSAR membership. At IMFAR, Mark plans to write a letter to the 400 INSAR student members and share his impressions of the conference, including: important research that was presented, the progress being made to involve stakeholders at the meeting, and to ultimately communicate to them what junior scientists can do to bridge our research with the autism community in their respective locations.