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.
“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.
Matthew de La Tour is a talented artist with autism who has been producing art since he was a child. His technique involves applying molten glue (from a hot glue gun, for instance) to a surface, painting the surface, and peeling off the glue to reveal a work of art that he calls an ‘autistic expression’.
When we asked what motivated him to create, he told us that creating art allows him to channel his emotions into something and overcome the challenges and hostility he faces in life. The world he creates through his art, he explained, is his own–with his own standards.
Matthew wants to share his art and techniques in order to help and inspire other people on the spectrum. To this end, he wrote the following post outlining each step of his method. Stunning photographs of his work are also shown below.
Step 1. Using a glue gun and mini glue sticks 4″ x .27″ put glue sticks in gun and apply glue to surface- example would be an art canvas.
Step2. Start with drawing shapes- like circles- triangles- and squares to get a feel of how the molten glue moves when you pull the glue gun trigger- remember molten glue will be very hot.
Step 3. Allow the glue to cool to your surface- then using spray paint in a vented area… or acrylic paint- lightly cover the glue on the surface- most paints dries in minutes.
Step 4. After paint is dry- pull the glue gently off the canvas and allow your creation to come forth. You can repeat the process or add more paint. You can gradually start making complex designs and create a technique of your own.
Molten glue can be used to rebind old books and create new covers for those books. Other examples of recommended surfaces are: bottles, picture frames, high-heeled shoes and anything you can imagine. Remember nothing is impossible you have the ability- just imagine.
Today we announced the launch of a series of surveys designed to determine which types of services for adults with autism are most needed in the New York metropolitan area. We are delighted to partner with UJA-Federation of New York and the Interactive Autism Network on this initiative. Read more below to see whether you are eligible to participate in the survey!
“The goal of this project is to identify the drivers of fulfillment and success for autistic adults in the areas of employment, leisure activities, and spirituality,” said Deborah Hilibrand, a member of UJA-Federation of New York’s Autism Task Force. “We will then use this information to help UJA-Federation and other agencies provide these critical activities by providing financial support for projects that deliver these services.”
“We also want to use the data to enhance public awareness about the critical issues facing adults with autism and their families by broadly disseminating the results of this survey,” said Alison Singer, president the Autism Science Foundation.
The free survey is designed to be completed entirely online. Surveys must be completed by Friday, November 30, 2012. All responses and data collected will be kept anonymous and confidential. Participants in this survey do not have to be Jewish or receive services from UJA-Federation, and people of all faiths are welcome.
Eligibility to participate in the UJA-Federation Adult with ASD Survey includes:
Residency in the five boroughs of New York City, Long Island, or Westchester.
An adult with ASD who is independent and is not under anyone’s legal guardianship.
The parent of an independent adult with ASD (for example, one’s adult son or daughter with ASD is not under legal guardianship and maintains the right to make their own medical and legal decisions).
The legally authorized representative of a dependent adult with ASD (for example, you may have legal guardianship or medical power of attorney for the adult with ASD).
If you are a member of one of these three groups we invite you to participate by joining the Interactive Autism Network – the world’s largest online autism research project — and then completing the “UJA-Federation Adult with ASD Survey.”
Additional funding for this project was provided by the Hilibrand Foundation and the FAR Fund.
“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.
Paul Morris, an adult with autism, gave a compelling and inspiring account of his journey from childhood to adulthood at ASF’s Science & Sandwiches event last night. Paul asked his psychiatrist, Dr. Andres Martin, Psychiatrist at the Yale Child Study Center, to help him share his story. In a candid discussion, Paul asked Dr. Martin a series of questions about what he was like when he first became his patient, and how he was different as an adult.
During the discussion, Paul explained that he used to be non-verbal and faced significant challenges as a result of his autism. As he grew older, his determination to achieve independence and lead a life comparable to his neurotypical siblings motivated him to become the self-sufficient, happily employed member of society he is today. Remarking on Paul’s growth, tenacity, confidence, and passion for autism advocacy, Dr. Martin called Paul a source of inspiration for families affected by autism.
This is a transcript of the speech Paul gave at the event:
My name is Paul Morris. Many of you know me from the past. Some of you worked with me. I was non-verbal until age 5. I had to be taught how to speak, how to listen and how to think. The years were hard. Sometimes I just didn’t understand. But look at me now. I graduated from the College Internship Program at the Berkshire Center in Lee, MA.
I have always wanted to do public speaking at various colleges for people who major in psychology and special education. I want to talk about my life with autism.
Autism is a genetic disorder that affects the brain and communication. When I was a little boy I did not know that I was different. When I became an older person, I wanted to do my own things, like hang out with friends, like my brothers Jesse, and Tyler, and my sister Sabrina. I did not know how to hang out with friends.
My parents wanted me to learn how to speak and communicate. It is not only about words, it is about behavior. It took me a long time to learn how to socialize with people. I am still learning what that means.
When I went to Middle School, the kids didn’t understand me. I think they were afraid of me because of my autism. It also took a long time for people to know how to socialize with someone like me. I didn’t understand when kids told me to do wrongdoings. Sometimes kids are rude.
Then there were the kids that were nice to me. They were kind and they sat next to me in the cafeteria but I did not go to recess because they said it wasn’t good for me. Today, I would suggest that special ed kids should go to recess and have an aide help them.
I learned that language is not only about speaking. It is about relationships. I was taught relationship development intervention. It was very hard for me. Eye contact was hard for me to do in the beginning but “Look me in the eye”, I am good at it now.
I met Dr. Martin in 1999. I couldn’t control myself. I would explode. I would obsess. I would cry in pain. He tried to help me with medicine.
The best things about High School were small classes in English and Math. I also enjoyed lunch groups in the guidance office. We made a friendship blanket and everyone signed it. Some of those kids were very nice to me and still contact me by phone, email and Facebook.
I started the College Internship Program in Lee, Massachusetts on July 3, 2006. The program was called ASPIRE. I looked up the definition of aspire. It means to dream, to pursue, to try, to wish, to struggle. I struggled in the beginning. Living on my own, I learned about hygiene, cooking, cleaning, how to get a job, self-awareness, taking care of money and figure out my problems.
Classes like theory of mind, realizing about how others talk to you and hidden curriculum were challenging. The C-STEP (Career Skills Training Employment Program) is very important for people who don’t go to college. I took classes in Self -awareness, critical thinking, English, Math, Working with people, Office procedures, Succeeding in the world of work, Business correspondence, and Internships. My best internship was at the Norman Rockwell Museum doing data entry and mailings to colleges for Art History Programs.
Advising sessions were very important at CIP. We did self -assessment forms. I rated my performance every week, and my advisor did it too. The ratings are listed as Under-performing, Average, Honors & Mentor.
One day freshman year my parents invited me to a Brewers/Mets game. My Mom gave me an option A: Do you want to go and find a way to get yourself home? Or B: Do you want to stay at school? I picked A. I researched Peter Pan Bus on the Internet and learned that I could take a bus from Lee, Massachusetts to Danbury, Connecticut. I bought the ticket and traveled by myself. When I stepped off the bus I said “The mentor has arrived!”
When I graduated in May, I was on Mentor status for 26 weeks in a row. At our graduation convocation ceremony I won the award for Most Improved Student. I also earned a certificate for 44 hours of community service, because I performed in a puppet show for children and sent toiletries to Africa. My favorite award, which I won 3 years in a row, was for Recreational Excellence. I never missed a meeting on Monday nights, where I made suggestions for weekend activities. I researched directions on map quest, how much it cost and assisted the Residential Coordinator in planning. I also was an officer in student senate.
It has been a very long way for me. I have worked very hard to achieve.
I now live in New York. I work at New York Medical College as a human resource assistant. I do data entry, scanning, shredding, copying, filing, and mailings. My supervisor, Tom is my mentor and friend. I wrote a letter to President Obama in 2009:
Dear President Obama,
My name is Paul Morris and I am a 21 year old guy who is high-functioning autistic. I was non-verbal until the age of 5. Now that I am looking for work and living with roommates, I am worried about my life. It’s going poorly for autistic adults because the funding is over. I want you to create programs for autism spectrum disorders. Today, you donate lots of money to autism.
From, Paul Morris
I want new interventions to help with autistic people. I want good education for them to learn. I want jobs and help with living. I want to do great things.
We are pleased to announced a two-year, $600,000 grant from the Simons Foundation to develop a multi-media campaign designed to increase awareness of the importance of brain tissue donation to further autism research.
“No effort is more important than raising awareness among families and scientists about the need for research on human brain tissue,” said Dr. Gerald Fischbach, Director of the Simons Foundation Autism Research Initiative.
Brain tissue research is critical for developing effective prevention and treatment options for autism but research in this area has lagged because of lack of tissue.
“In every area of medicine,” said Dr. Thomas Insel, Director of the National Institute of Mental Health, “new diagnostics and new treatments have come from studying the affected organ. In autism, we have been challenged by trying to understand a complex neurodevelopmental disorder without having enough brain tissue available for study. In so many ways, our ability to deliver for families with autism depends on the success of this effort.”
ASF President Alison Singer will serve as principal investigator on the project. Prior to founding the Autism Science Foundation, Singer served as Executive Vice President for Communications and Awareness at Autism Speaks, where she developed and co-produced the award-winning “The Odds” autism awareness campaign in conjunction with the Ad Council.