Comments on ‘The Association between Bullying and the Psychological Functioning of Children with Autism Spectrum Disorders’

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.

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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IMFAR gave me confidence to advocate for more support for women with ASD

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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IMFAR reminded me we still have work to do

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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New Study Confirms Autistic Wandering is Widespread

“Occurrence and Family Impact of Elopement in Children with Autism Spectrum Disorders,” was published today in the November 2012 issue of Pediatrics (published online Oct. 8). The study was conducted by the Interactive Autism Network at Kennedy Krieger Institute and indicates that half of children with autism wander away from safe environments.  The study was funded by a coalition of autism advocacy organizations led by the Autism Science Foundation.

Researchers surveyed 1,367 families with children between the ages of 4 and 17 who had been diagnosed with ASD. Nearly half – 598, or 49 percent – of the families reported that their child had attempted to elope at least once after age 4. Of those, 316 children went missing long enough to cause concern.

Greater autism severity was associated with increased elopement risk. Children eloped most commonly from their home, a store, classroom or school. Nearly half of parents said their child’s elopement was focused on an intent to go somewhere or do something, versus being confused or lost. Close calls with calamities like traffic injury or drowning are frequent, with police called in more than a third of cases.

Of parents whose children had eloped, 43 percent said the issue had prevented family members from getting a good night’s sleep, and 62 percent said their concerns had prevented family from attending or enjoying activities outside the home. For 56 percent of parents, elopement was one of the most stressful behaviors they had to cope with as caregivers of a child with ASD, and half said they received no guidance from anyone on preventing or addressing this behavior.

Read the full study here. 

Read coverage in USA Today and the New York Times.

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Grants will fund pre- and post-doctoral autism research fellowships

Today we opened our applications process for the 2013 Pre- and Post-doctoral Training Awards for graduate students, medical students and postdoctoral fellows interested in pursuing careers in basic and clinical research relevant to autism spectrum disorders. In the past three years, ASF has funded over $700,000 in pre- and post-doctoral grants.

“Pre- and post-doctoral fellowships not only build our knowledge about what causes autism and how best to treat it, but also build our future by encouraging outstanding young investigators to dedicate their careers to autism research,” said Alison Singer, president of ASF.

“We are so grateful to all our donors and volunteers who have come together to support autism research and who make these grants possible,” said Karen London, co-founder of ASF.

The proposed training must be scientifically linked to autism. ASF will consider for training purposes all areas of related basic and clinical research including but not limited to:

• Human behavior across the lifespan (language, learning, communication, social function, epilepsy, sleep, repetitive disorders)
• Neurobiology (anatomy, development, neuro-imaging)
• Pharmacology
• Neuropathology
• Human genetics/genomics
• Immunology
• Molecular and cellular mechanisms
• Studies employing model organisms and systems
• Studies of treatment and service delivery

Applications must be received by November 16, 2012. Additional information about the RFA can be found at www.autismsciencefoundation.org/ApplyForaGrant.html.

Grant applications will be reviewed by members of ASF’s Science Advisory Board (SAB) and other highly qualified reviewers. Current SAB members include Dr. Joseph Buxbaum (Mt. Sinai School of Medicine); Dr. Emanuel DiCicco-Bloom (UMDNJ-Robert Wood Johnson Medical School); Dr. Sharon Humiston (University of Rochester); Dr. Bryan King (University of Washington, Seattle); Dr. Ami Klin (Emory University); Dr. Harold Koplewicz (The Child Mind Institute); Dr. Eric London (New York Institute for Basic Research); Dr. Catherine Lord (New York Center for Autism and the Developing Brain); Dr. David Mandell (University of Pennsylvania/CHOP); Dr. Kevin Pelphrey (Yale Child Study Center) and Dr. Matthew State (Yale Medical School).

To learn more about the ASF’s grant programs, and to read about projects funded through this mechanism in prior years, visit www.autismsciencefoundation.org

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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.

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Prevent Bullying and Shape the Future

This is a guest post from ASF Science Writer Jerri Sparks Kaiser. Jerri, a parent of four children, one of whom has autism, blogs for ASF from a parent’s perspective about the latest autism research. A former Congressional Press Secretary, Jerri is an experienced science writer and has written specifically about autism for many years. Before her life in PR, she was a trained researcher having earned her B.A. in Psychology at UCLA. She currently lives with her family in New York.

Photo Credit: Eddie~S

Bullying is something that has been around as long as adolescents have been in close proximity to each other.  Whether your children are in large schools or small schools, bullying exists.  With the recent report that ASD children are three times more likely to be bullied than their unaffected siblings, the impact of bullying has taken on a special urgency in my home.

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