Jason Ross is an Autistic adult working for the Autism Science Foundation. He has appeared on PBS’ “This Emotional Life” with Ami Klin. Jason blogs about neurodiversity, autistic rights, fiction, poetry, and artwork at www.drivemomcrazy.com.
As an adult with autism, I am encouraging Autistic people to step up and share their voices as we continue this journey to build a better community of inclusion. Part of building that community is developing and improving services for adults with autism, which is the ultimate goal of ASF and UJA’s Adult with ASD survey. Hopefully this survey will bring us closer to autism acceptance.
I decided to join this initiative and help Autism Science Foundation with this research project because many of my Autistic friends that I have spoken with either lack services or have none at all. Autistic adults need improved services to lead easier and more fulfilled lives.
We need improved services because:
Services can build our strengths- we can use our strengths to build our lives!
Services can help us get jobs- Autistics need jobs too. Better services will better prepare us for employment in the future!
Services can help us communicate- we need improved services in order to communicate our thoughts and feelings especially since some people think we don’t have feelings or thoughts of our own!
Services can help us live inclusively in society- although social skills classes are important, most classes don’t include everything we need to know.
Autistic people face many barriers in society. Please complete the survey to help lift them. You may be eligible for the survey if you are an adult with autism or a parent or caregiver of an adult with autism. If you aren’t eligible, recommend this survey to someone who can take it. A barrier we have always faced is not being included in helping with research that affects us. The survey being administered now will help researchers understand what works best for us and what does not. Help us help researchers do the right thing. Be heard.
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.
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.
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.
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.
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.
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.
Instructions:
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.
