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Posts Tagged ‘IMFAR’

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 Marjorie Madfis

Marjorie Madfis, selected by Autism Science Foundation as a 2012 IMFAR Travel Grantee, is a parent. Additional posts by Marjorie from IMFAR can be found at her blog.

I am the mother of a 16 year old girl who was diagnosed with PDD-NOS, an Autism Spectrum Disorder, when she was two and a half. Before she was born, I never knew anyone with autism. By the time my daughter was 12 months old, I had a suspicion. By the time she was 18 months old, I knew something was out of the ordinary, though my pediatrician did not. I sat down in a friend’s office and cried. For several years, I thought, “Oh, one more speech therapy session and she’ll be all better.” Since then, I’ve undergone a continual process of learning. I found that being a mother of a child with autism is an all-consuming job and life, yet I have to juggle full-time employment with parenting.

When I started fundraising for National Alliance for Autism Research (NAAR) in 2001, I thought that within a few years, we would have identified a cause and a cure. Eleven years later, as I attended various sessions at IMFAR, it seemed to me that identifying the cause or causes — let alone a “cure” — is still at least a few years away.  However, I was reminded that scientists have undertaken a vast amount of research, which has led to greater understanding of the disorder and its attributes.

At IMFAR, I attended an interest group session about autism in females and learned that females make up only about 20-25% of children diagnosed with ASD. This session left me with many questions about why fewer females are diagnosed. Is it because they are not identified until they are older? Are females better able to compensate?

I also attended a session about cognition and behavior across the lifespan. I understood roughly 33% of what was said. The researchers reported on auditory and visual processing, multisensory processing, motor impairments, posture, balance and the implications of each for socialization. This session helped me understand that there is a correlation between the sensory system and social skills.

It was taxing to comprehend the data and findings from the researchers’ sessions. Parents are not the primary audience at IMFAR. In fact, I would guess we made up less than 5% of the audience. However, several researchers approached me during the cocktail reception to tell me they appreciated my questions during the Q&A sessions. I told them I wanted to make sure I got the most out of it. My dad always said, “There is no such thing as a stupid question; if you don’t know, ask.”

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By Eric Hogan

Eric Hogan, selected by Autism Science Foundation as a 2012 IMFAR Travel Grantee, is a self-identified individual with autism. This post was also featured on his blog.

In May, I attended International Meeting for Autism Research (IMFAR) 2012 in Toronto, Canada. There were about 2,000 professionals from the autism field, and many autism stakeholders in attendance. International Society for Autism Research  (INSAR), the organization that put this event together, had a room with hundreds of posters on display.

Each poster represented a unique research project on a particular facet of autism. There was an autism expert in front of each poster available to answer any questions. In my opinion, the best thing about the event was the accessibility to a wide range of people from parents of people with autism to medical doctors, and persons with autism such as myself.

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By Deb Dunn

Deb Dunn, selected by Autism Science Foundation as a 2012 IMFAR Travel Grantee, is a parent of two children with ASD and Outreach Director at Center for Autism Research at CHOP.

I am honored to have been selected as a recipient of a travel grant from the Autism Science Foundation to attend the International Meeting for Autism Research (IMFAR), held this May in Toronto, Canada. As both a professional working in the field of autism and the parent of two children diagnosed on the autism spectrum, I know of no other conference that packs so much in-depth, meaningful information into just a few days.

I’ve had the good fortune to attend IMFAR in the past. Thus I know firsthand how overwhelming the conference can seem – with new presentations every 15-30 minutes and competing topics of interest being presented at the same time in different rooms. To attempt to convey how IMFAR feels to someone who has never attended, I recorded the Parent’s Guide to IMFAR video post, which is posted on the YouTube channel for the Center for Autism Research (CAR):  and on CAR’s blog.

I also created a YouTube video following a presentation I attended on adolescents who “outgrow” their autism diagnosis. The study found that 26% of children moved off the autism spectrum as they aged. However, a large percentage of these individuals moved into other diagnostic categories.  My video discusses the potential implications of “optimal outcome,” including how having this mindset might be a disservice to individuals with autism as they enter adulthood.

A number of other presentations piqued my curiosity over the three days of the conference. The first morning, I attended Dr. Ruth Feldman’s keynote presentation, Bio-behavioral Synchrony and the Development of Social Reciprocity, which discussed the benefits of oxytocin, a naturally occurring hormone that is currently being tested in some individuals with autism spectrum disorder (ASD). Oxytocin has been used to increase social bonding. Unlike the majority of oxytocin studies, however, Dr. Feldman discussed using oxytocin in parents of children with ASD as opposed to in the children themselves. When parents of very young children were administered oxytocin intranasally, oxytocin levels increased not only in the parents who were administered the hormone, but also in their children. This mimicking response showed promise as a prophylactic intervention for children at risk for developing ASD. One concern I had with Dr. Feldman’s presentation, however, was the potential for her research to be misconstrued. For too long, parents – particularly “Refrigerator Mothers” – were considered at fault for their children’s autism. I don’t think Dr. Feldman intended to imply that parents are not capable of bonding with their children and thus are responsible for their children’s autism, but several parents I spoke with in the room came away with a feeling that once again parents were being blamed.

Throughout the conference, there was much discussion of the proposed revisions to the definition of pervasive developmental disorders/autism spectrum disorders in the Diagnostic and Statistical Manual of Mental Disorders – DSM-5. Presentations discussing the changes were particularly popular at the conference, especially the special session on Friday afternoon, presented by the members of the DSM-5 Neurodevelopmental Disorders Workgroup. In this session, I learned much about the process of making the changes as well as their substance. I took this information and created, with input from two of my co-workers who attended the conference, a handout for parents to help them understand what the changes are and the potential implications. This handout has been distributed at many conferences in Pennsylvania and New Jersey and is available on in PDF form on CAR’s website.  It is also on the website for autismMatch, a registry for families interested in participating in autism research, and was sent to over 10,000 subscribers of CAR’s email newsletter. Additionally, I presented on DSM-5 changes as part of a presentation to parents of adolescents with ASD in September and have been asked to do another presentation in 2013.

On Friday of the conference, I had the good fortune to attend the Autism Stakeholders Luncheon. Dr. Beth Malow discussed sleep issues in children with ASD, Dr. Marjorie Solomon talked about a topic of special interest to many stakeholders in the room – friendship during adolescence, Dr. Susan Swedo discussed DSM-5 changes and communicated her own distress at the way media stories had sensationalized the changes and vilified her committee, and Dr. Matthew Goodwin discussed new ways to measure distress in children with ASD by monitoring physical symptoms of stress.

Saturday of the conference continued to be full of information and insight. I attended Dr. Alan Evan’s keynote address that morning, Structural Connectivity in Neurodevelopment, in which he described brain connections using the analogy of roads. Brains should be globally efficient, with clusters of local roads, connector hubs, and highways for traveling long distance.  As someone who frequently speaks to parents about autism neuroimaging research, I found Dr. Evan’s presentation a good model to follow in simplifying difficult concepts for a lay audience. (For me, this presentation was a nice complement to the Invited Educational Symposium on Communicating Autism Science, which was held Thursday afternoon.)

In addition to the dozens of presentations I attended at IMFAR, I also made several tours through the poster sessions. Frequently the poster session presenters are young students, research assistants, or autism fellows still in training. The enthusiasm and dedication I witnessed in all that I spoke to is encouraging for the future of autism research. I videotaped several of poster presentations and posted them to CAR’s YouTube channel.

I am honored to have been given a grant by the Autism Science Foundation to attend IMFAR 2012. The knowledge I gained from attending continues to permeate my work at the Center for Autism Research and, I hope, informs my discussions with parents of children with ASD. Thank you for the opportunity.

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By Melissa Shimek
Melissa Shimek, selected by Autism Science Foundation as a 2012 IMFAR Travel Grantee, is a  self-identified individual with autism.
Since attending IMFAR, I have concentrated on some ongoing activities and have taken on some new projects. Firstly, I  continue writing in my blog (as time allows) which I began before the 2012 conference. My writing has benefited from the additional information gained at IMFAR. My viewpoint is enriched and my knowledge base is expanded. I also discovered new topics for exploration. As before the conference, I am still considering continuing my education in the field of neuropsychology at a local university.
This past summer, I had the privilege of addressing a group of college-age individuals on the autism spectrum by participating in the AIM program at Mercyhurst University in Erie, PA. During the session, I was able to elaborate on many of my own experiences with newly acquired insight. Also, using what I learned at IMFAR 2012 as a resource, I kept many in attendance engaged and inquisitive. I have since been approached to be involved with the group annually and to begin work with other currently enrolled AS students at the university.
Recently, I was contacted by a local private non-profit, KaleidAScope, to assist with high school aged support group meetings. The extent of which my services will be utilized is still becoming clear and will undergo continuous change. Eventually, it may encompass more activities with individuals of all ages affiliated with this group.
Seeing a need in my community for more available supports to women on the autism spectrum, I have begun working with another local woman towards structuring reoccurring group meetings. These meetings would be open to women teenage years through adulthood looking for disclosure and understanding not available within the general public or within mixed gender meetings. We have secured a location. We are currently looking for an agreeable time and framework. By reaching out to service providers within the community, a small population of potential participants with interest/need has been expressed.
I have communicated interest as a potential participant in ongoing autism spectrum research at the University of Pittsburgh. I have submitted the initially requested documentation. Also, my family and I have completed preliminary interviews. I am hoping I will be able to volunteer my time to this project, adding an underrepresented (adult) female component to autism research. My time at IMFAR definitely energized my perception of current research in this field.
Finally and most importantly, my acquired knowledge from attending IMFAR 2012 has given me added confidence while advocating for my daughter during the drafting and implementing of her first 504 plan. I was able to clearly express my concerns and actively aid in constructing necessary accommodations and additional instructions.
The opportunity the Autism Science Foundation provided to me with a travel grant to IMFAR 2012 has unending possibilities. It was a once in a life-time experience which I am so grateful to have witnessed.

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By Emily Willingham

Emily Willingham, selected by Autism Science Foundation as a 2012 IMFAR Travel Grantee, is a parent and writer for The Thinking Person’s Guide to Autism Blog.

My overall experience at IMFAR was one of dizzying confusion. The conference is huge, with hundreds of posters to view, presentations of interest to me scheduled in conflict with one another, and many comments that left me wanting researchers to talk more to autistic people and less about them and their parents. Some presentations were quite enlightening–one regarding the CDC numbers was in particular rather alarming to me. Others felt like duds, in part because I felt that some presenters lacked empathy when talking about autistic people.

In other words, it was just like any other large scientific conference I’ve attended except that this time, it was personal, and I took some things personally. But I was there as the science editor for the Thinking Person’s Guide to Autism (TPGA), so I channeled the science part of me and left the personal part to other members of our TPGA team.
I wrote two posts, both representative of my scientific interests, about IMFAR 2012, which appeared at TPGA. The first is related to the potential role of androgens in autism and begins:
“Much of what I saw at IMFAR (self-selected, obviously) focused on assessing sex hormone differences or the presumed outcomes of such differences in autistic vs non-autistic populations. As the Father of the Extreme Male Brain Hypothesis that androgen levels relate to autism, Simon Baron-Cohen appeared as senior author on several posters in this subject area and also gave a talk on the same topic. While he is possibly best known in a negative light in autism circles for his tautological “autistic people do poorly on my empathy test ergo autistic people lack empathy” ideas, what I discuss below is not related to that, at all. It’s all about the steroid hormones during development in the womb, and I found it fascinating …”
My second post is a discussion of the relevance of mouse models of autism and the science associated with them. What I ended up writing was both a primer and a commentary. The core of it was as follows:
“But I’m feeling a little jaded about animal models in autism because of the genetics and genomics data I saw presented at the conference. With a few exceptions, nothing seems to have emerged as a clear new contender for knocking out or otherwise manipulating in mice. Some of the usual suspects, like SHANK, were there. But the genome-wide association studies, intended to examine a genome for changes associated with a disorder or other condition, are not kicking out a lot of obvious single candidates for genes associated with autism. It’s almost looking like we’d have to make about a thousand animal models of autism to tease out various associations between a gene change and a specific autism-related endpoint.”
Because autism is as much a social human construct as it is a genetic or neurobiological construct, using mouse models and mice with “autistic-like” behaviors will get us only so far. I think that the best use of these models is to target candidate genes–which is what mouse models in general are for. But when every story about a mouse model of autism gets trumpeted as the be-all and end-all of autism gene studies, autism behavioral studies or autism cure studies, I start to feel a little jaded.
IMFAR 2012 was a worthwhile conference to attend, and I thank Autism Science Foundation for providing travel funding for my attendance. I spent the entire day every day in sessions and viewed, I believe, every single poster at the conference, talking with many investigators. It was a full immersion in autism research, with views that were interesting and not so interesting. The commentary I heard tells me that we have some work to do so in terms of how some researchers, at least, view the autistic people who are the focus of their work.

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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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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.

 

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