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Posts Tagged ‘autism research’

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 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 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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It’s that time of year again! Today we’re thrilled to announce the launch of our annual year end fundraising campaign, Recipe4Hope. Every dollar donated to the campaign will go directly to funding pre- and post-doctoral autism research fellowships to expand our understanding of what causes autism and to develop better treatments.

Each year the Recipe4Hope campaign profiles a family that epitomizes the spirit and teamwork shown by autism families around the globe. This year, the campaign focuses on the Congdon family from Hendersonville, North Carolina.

“When we visited the Congdon family we saw Eric and Marian Congdon and their children, Lydia (17 years), Emily (16 years), who has autism, Eric (15 years), and Sara (12 years) working together to prepare their holiday meal,” said Dawn Crawford, community relations and media manager of the Autism Science Foundation.  “They worked as a great team, just as the whole autism community must work together as a team to fund research and find new solutions for our families.”

“ASF is getting the science done. They are funding the studies we need to really make a difference in our kids’ lives,” Eric Congdon said.

“ASF is a dream come true,” said Marian Congdon. “Science and autism treatments are huge for me and my family. There is so much out there as a parent to read. It’s good to know that ASF cuts through the pseudoscience and shares trusted studies.”

“We know that autism research is a great source of hope for families with autism,” said Alison Singer, president of the Autism Science Foundation. “Through our pre- and post-doctoral fellowship program we are putting bright young scientists to work unlocking the causes of autism and developing effective treatments that will improve people’s lives. We need each member of the autism community to take his or her place at the table in funding research. Everyone has a hand in this.”

The fundraising campaign runs through December 31. Supporters are encouraged to share favorite family recipes and holiday dishes on ASF’s Facebook page and Twitter account. Follow hashtag, #recipe4hope, to keep up with the latest. You can even create your own fundraising page to raise donations! It’s easy and free to set up a personal page and give the gift of hope this holiday season.

The Autism Science Foundation has funded over $700,000 in pre and post-doctoral grants. Ongoing donor support for this program through the Recipe4Hope campaign is critical. ASF’s pre- and post-doctoral grant program encourages bright, energetic young scientists to devote their careers to autism research. These research grants are already having a real impact on the field.

To donate or learn more about the Recipe4Hope campaign, visit recipe4hope.causevox.com. “Like” ASF on Facebook at Facebook.com/autismsciencefd, or follow ASF on at Twitter.com/autismsciencefd, on Pinterest at Pinterest.com/autismsciencefd and on Instagram at statigr.am/autismsciencefd.

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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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