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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ASF and UJA-Federation of New York to Launch Survey of Services Needs of Young Adults with Autism

Today we are pleased to announce an exciting new partnership with UJA-Federation of New York, an organization dedicated to strengthening the Jewish people and inspiring a passion for Jewish life and learning. We will be working together to launch a survey of the services needs of young adults with autism in the New York metropolitan area. The announcement was made by Travis Epes, chair of UJA-Federation’s Autism Committee, at today’s fifth annual UJA-Federation of New York Hilibrand Autism Symposium.

ASF and UJA-Federation will work with the Interactive Autism Network (IAN) at the Kennedy Krieger Institute at Johns Hopkins University to design and implement the survey.

The survey will gather data from three groups; independent adults 18-35 with autism, parents of independent adults with autism, and parents of adults with autism under guardianship. The goal is to learn more about what leads individuals with autism to have a meaningfully engaged day.  The survey will include questions about employment, leisure, and participation in spiritual activities.

“We want to learn specific information about the drivers of success, so that UJA-Federation and other philanthropic organizations can provide financial support to those types of activities, thus ensuring that the programs that lead to success become more widely available” said Epes.

The surveys are expected to be released in September.  To participate or to receive updates about this project, email contactus@autismsciencefoundation.org, indicating which of the three survey groups best describes your family situation.

Additional support for this project has been provided by the FAR Fund (www.farfund.org).

More About UJA-Federation of New York
For more than 90 years, UJA-Federation has been a central force for communal planning and philanthropy in the New York Jewish community. Through UJA-Federation, more than 60,000 donors pool their resources to help people in need, inspire a passion for Jewish life and learning, and strengthen Jewish communities around the world — to address the issues that matter to us most as Jews and as New Yorkers, such as helping those affected by autism. Working with more than 100 network beneficiary agencies, synagogues, and other Jewish organizations, our reach spans from New York to Israel to more than 60 other countries around the world, touching 4.5 million people each year. Because we do the most good when we do it together. For more information, please visit our website at www.ujafedny.org.

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Unraveling the Mystery of Touch in the Autistic Brain

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.

Me: Jared, do you like to be hugged?

Jared: I don’t know.  Kind of.

Me: How does the hug make you feel?

Jared: Pretty happy, bye.

Then he hung up on me.  Such is the life of the mother of an autistic child.  It is so hard to get a conversation out of him, much less a phone conversation with its inherent lack of visual cues and persistently following him around the room.  Jared is also a teenager who wants to do his own thing.

The reason I asked Jared these questions is because a new study out of the Yale Child Study Center by Martha Kaiser (no relation) indicates that individuals with autistic traits may not process hugs as socially rewarding.  Specifically, two areas of the brain, the STS (superior temporal sulcus) and the OFC (orbitofrontal cortex), were found not to be stimulated during slow, light brushes with a watercolor brush.

In my own experience with my son Jared, I remember the day he was born when the nurse placed him in my arms.  I tried to initiate breastfeeding but Jared turned away.  I noticed then that whenever I stroked his cheek like the books said to stimulate the nursing instinct in your baby that my son turned the opposite direction.  I thought I was doing it wrong and I visited with several lactation consultants.  Nothing worked and finally my milk dried up at 12 weeks because Jared just didn’t get the sucking down properly.  I even pumped and used a crooked syringe designed to teach babies how to breastfeed, but nothing worked.  I was so immensely disappointed in myself and felt like a failure as a mother.  The unkind comments of disapproving moms at the mall when I pulled out Jared’s formula bottle added to that pain.  It is amazing how cruel people can be when they don’t know the situation.  To this day I feel like crying when I remember one woman saying “you do know that breast is best” as she shook her head at me.

What I came to realize years later is that not only did Jared have difficulty in the muscle movements needed to suck efficiently, he also did not crave that physical touch that my later born children did.  My three younger children would gently caress my arm, neck or chest area as they nursed and they would squeeze me with their other hand.  It was so enjoyable.  They also curled their body around mine as if we were still attached.  The only time Jared did that as a young infant and child was when he was terrified of something.

In fact, to this day Jared only seems to crave physical contact when he is in distress, such as when he has had a “bad moment” at school or the group home where he now lives or when he has been hospitalized for behavioral problems.  It is bittersweet that I can only get that bonding from him when he is in distress but I tell myself at least he needs me.

Recently Jared called me late at night from his group home, crying hysterically.  He had an altercation with another client at the group home, which is about an hour away from our home, and he wanted me to make him feel better.  I spoke to him in soothing tones over the phone, my heart breaking because I was not beside him to comfort him, and he slowly calmed down.  We did a visualization technique I learned from the book “When My Autism Gets Too Big.”  I guided him through deep breaths and encouraged him to close his eyes and rub his upper legs slowly as we both visualized the creek in Vail, Colorado or the beach at Martha’s Vineyard, two of our favorite vacation stays.

Then Jared asked sadly “Who is going to hug me?”  It was a remarkable thing for him to ask.  My heart was so broken by this point, but I said into the phone “I am, right now.  Wrap your arms around yourself and know that it is me.  I am coming through this phone to hug you right now.”

“Can you read me a story?” he then asked.  “Yes,” I said.  Then I recited “Good Night Moon” from memory and my son fell asleep.  Sometimes a virtual hug is all I can give my son, late at night and so far away.  Our journey with autism is not at all an easy one.  I take comfort in the fact that Jared does now ask for the occasional hug and every now and then tells me he loves me, maybe not always with words but actions.

The research may indicate there is no social reward but personally I feel the results of the study indicate a different way of expressing and processing the social reward.  Scientists just haven’t decoded the autistic brain’s response to social stimuli yet.  Different does not mean absent.

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