Blog by Beth Weiner, Camp Director of Camp Good Times in Charleston, South Carolina, which received a grant last year:
The 2011 session of Camp Good Times of Charleston, a recipient of an Autism Speaks Baker Summer Camp Scholarship Fund, was activity oriented, fun, child centered, and safe for the 130 children who attended this past June. Our camp includes not only children on the autism spectrum, but neurotypical peers who come to camp, have fun, be campers and friends with everyone.
The highlights from our 12 days include…swimming everyday, field trips to area water parks, malls and movies, a visit from a Therapy Dog group, Spray Play with the local firefighters(which was really cool!), The OT class from The Medical University of South Carolina joined our staff for a day, a “Valentines Day” party, summer solstice party for our younger campers and parents, Yo-Music, a blend of Yoga and Music, art, sports, computers, singing and dancing, piñata party, pizza and the campers favorite part of the day…SNO_CONES!
Below are some of the individual campers who benefited from the Autism Speaks Baker Summer Camp Program grant:
Four of the children who attended live in a group home. The three girls, Jen, Dee Dee, and Monique have been in a residential group home for girls with ASD for as long as I have known them. Ahmad has been a camper for many years, and has only recently been placed in a group home run by the same organization. I was fortunate to be able to offer the Baker Summer Camp Scholarship opportunity to these children, since other public funding was not available and they would not have come to camp with out it.
Two of the campers who attended through the generosity of Autism Speaks had to have their own personal assistant due to medical needs. These families were able to get financial assistance for the medically necessary aides, but there was no funding left for the camp fees. I know these families want their child to have a typical summer camp experience and the respite provided them was much needed. The Baker Summer Camp Scholarship was able to provide that.
The other campers and families also have challenges throughout the school year. I have gotten to know these families very well, all of the camp families, and the fun experience that Camp Good Times provides their child and the respite provided the families is what they value. For more info and pics…visit www.campgoodtimesofcharleston.org!
Today we launched a consolidated grant search engine on autismspeaks.org that contains all of the research and community grants that we have funded since 2006. This comprehensive search gives our community and staff a complete picture of the impact that Autism Speaks has on the community and around the world.
Here are the top 6 features that this updated site includes:
- Both Science and Family Services grants, with icons to distinguish them
- Attachments! Contributors to the database can now add attachments describing the outcomes of the grants. This will include research papers and/or links to publications available online.
- Advanced search that allows for multiple terms and criteria.
- Customized search and export for offline and presentation use
- Behind the scenes goodness: Including a “data bridge” to keep the grants up to date
You can find all this goodness here.
Thank you to all our supporters, whose funding made the following discoveries possible in November. Explore more of the studies we’re funding with our Grant Search.
* Empathic Responding in Toddlers at Risk for an Autism Spectrum Disorder. McDonald NM and Messinger DS. J Autism Dev Disord. 2011 Nov 1. [Epub ahead of print]
* Association of GTF2i in the Williams-Beuren Syndrome Critical Region with Autism Spectrum Disorders. Malenfant P, Liu X, Hudson ML, Qiao Y, Hrynchak M, Riendeau N, Hildebrand MJ, Cohen IL, Chudley AE, Forster-Gibson C, Mickelson EC, Rajcan-Separovic E, Lewis ME, Holden JJ. J Autism Dev Disord. 2011 Nov 3. [Epub ahead of print]
* An X chromosome-wide association study in autism families identifies TBL1X as a novel autism spectrum disorder candidate gene in males. Chung RH, Ma D, Wang K, Hedges DJ, Jaworski JM, Gilbert JR, Cuccaro ML, Wright HH, Abramson RK, Konidari I, Whitehead PL, Schellenberg GD, Hakonarson H, Haines JL, Pericak-Vance MA, Martin ER. Mol Autism. 2011 Nov 4;2(1):18.
* Epigenetic Signatures of Autism: Trimethylated H3K4 Landscapes in Prefrontal Neurons. Shulha HP, Cheung I, Whittle C, Wang J, Virgil D, Lin CL, Guo Y, Lessard A, Akbarian S, Weng Z. Arch Gen Psychiatry. 2011 Nov 7. [Epub ahead of print]
* Risperidone-Related Improvement of Irritability in Children with Autism Is not Associated with Changes in Serum of Epidermal Growth Factor and Interleukin-13. Tobiasova Z, Lingen KH, Scahill L, Leckman JF, Zhang Y, Chae W, McCracken JT, McDougle CJ, Vitiello B, Tierney E, Aman MG, Arnold LE, Katsovich L, Hoekstra PJ, Volkmar F, Bothwell AL, Kawikova I. J Child Adolesc Psychopharmacol. 2011 Nov 9. [Epub ahead of print]
* Neuron Number and Size in Prefrontal Cortex of Children with Autism. Courchesne E, Mouton PR, Calhoun ME, et al. JAMA.2011;306(18):2001-10.
* Behavioral and Physiological Responses to Child-Directed Speech of Children with Autism Spectrum Disorders or Typical Development. Watson LR, Roberts JE, Baranek GT, Mandulak KC, and Dalton JC. J Autism Dev Disord. 2011 Nov 10. [Epub ahead of print]
* Sex differences in repetitive stereotyped behaviors in autism: Implications for genetic liability. Szatmari P, Liu XQ, Goldberg J, Zwaigenbaum L, Paterson AD, Woodbury-Smith M, Georgiades S, Duku E, Thompson A. Am J Med Genet B Neuropsychiatr Genet. 2011 Nov 16. [Epub ahead of print]
* Diagnostic Yield of Chromosomal Microarray Analysis in an Autism Primary Care Practice: Which Guidelines to Implement? McGrew SG, Peters BR, Crittendon JA and Veenstra-Vanderweele J. J Autism Dev Disord. 2011 Nov 17. [Epub ahead of print]
* Participation in Social Activities among Adolescents with an Autism Spectrum Disorder. Shattuck PT, Orsmond GI, Wagner M, Cooper BP. PLoS One. 2011;6(11):e27176. Epub 2011 Nov 14.
* Exploring the Relationship Between Autism Spectrum Disorder and Epilepsy Using Latent Class Cluster Analysis. Cuccaro ML, Tuchman RF, Hamilton KL, Wright HH, Abramson RK, Haines JL, Gilbert JR, Pericak-Vance M. J Autism Dev Disord. 2011 Nov 22. [Epub ahead of print]
* Normal Rates of Neuroradiological Findings in Children with High Functioning Autism. Vasa RA, Ranta M, Huisman TA, Pinto PS, Tillman RM, Mostofsky SH. J Autism Dev Disord. 2011 Nov 22. [Epub ahead of print]
* QTL replication and targeted association highlight the nerve growth factor gene for nonverbal communication deficits in autism spectrum disorders. Lu AT, Yoon J, Geschwind DH, Cantor RM. Mol Psychiatry. 2011 Nov 22. [Epub ahead of print]
* Very Little High-quality Evidence to Support Most Medications for Children with Autism Spectrum Disorders. Coury D. J Pediatr. 2011 Nov;159(5):872-3.
Autism Speaks recently awarded 16 new autism research grants, totaling over five million dollars. You can learn more about them here.
This guest post is by John Elder Robison. John Elder Robison is a free range Aspergian male, having grown up in the 1960s before the Asperger’s diagnosis had come into common use. After dropping out of high school, John worked in the music business and the electronics industry before founding Robison Service, a specialty automobile company in Springfield, Massachusetts. Today, John serves as an adjunct professor in the department of Communication Sciences and Disorders at Elms College in Chicopee, Massachusetts. He has also served on the public review board for the National Institutes of Mental Health, and he is currently involved in TMS autism research at Harvard Medical School and Beth Israel Deaconess Medical Center. John is the author of Look Me in the Eye, my life with Asperger’s. John’s writing has been translated into 18 languages and is sold in 60+ countries. John’s next book, Be Different!, will be published in the spring of 2011. In addition to his autism advocacy work, John is a lifelong car enthusiast, an avid hiker, a photographer, a music lover, and a world-class champion eater. He lives in Amherst, Massachusetts.
Readers of my blog know that I’ve been concerned about the direction of autism research for a long time. I am also troubled by the way we allocate dollars in general in the autism world. I’m a fairly action oriented guy, and I don’t like to sit around and worry. I want to do something; I want to take action. If this were a political issue, I’d have to run for office. Even the thought of that makes me cringe. Luckily, I now have the opportunity to make a difference without taking such an extreme step.
Last year, I was invited to join the Public Review Board for the National Institutes of Mental Health. Today I have agreed to join the Scientific and Treatment Advisory Boards of Autism Speaks. Founded in 2005, Autism Speaks quickly became the largest non-government source of autism funding in this country. Last year, they allocated 37 million dollars for autism research.
In the past, Autism Speaks has been criticized for not having any autistic people in its organization. They do have autism parents and grandparents, of course, but the views of parents are often at odds with those of their autistic offspring. People on the spectrum rightly feel that we – the affected individuals – should be at the heart of any funding decisions that may affect us. I agree with that, so I decided to take an active role.
I’ll be joining a board made up of thirty-some scientists and two parents. Each of us will have the opportunity to read, consider, and discuss proposals. The Autism Speaks review process is familiar to me; since it’s modeled on the system developed the NIH. I feel it’s a fair way to allocate limited resources and I’ll surely make the most of my opportunity.
I believe it’s a great honor to be selected for this role, first by the government and now by Autism Speaks. I will certainly do my best to live up to everyone’s expectations. I’m aware that my vote is only one among thirty, but the fact that I myself am on the spectrum will make a difference, and I certainly believe in speaking up for whatever I support. So I’m off and running!
One of my principal areas of concern will be identifying and funding studies that have a high likelihood of improving the lives of autistic people today. Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability. The TMS work I’m involved with at Harvard/Beth Israel is a good example of work that can lead to better lives for today’s autistic population.
There is also a lot of potential in behavioral therapy. Therapies like ABA and RDI have been successful for some on the spectrum, but they’ve totally failed for others. Are there new cognitive therapies with promise? That too is something that could make lives better today.
In addition to my work on the science side, I hope to work more closely with the Wrights and Autism Speaks management to help the organization appreciate the needs of autistic people at all points on the spectrum. That’s going to be a real challenge because the views of different people on the spectrum are so widely divergent.
When the Wrights founded Autism Speaks their focus was on children with significant autistic disability. While that remains important, I hope to broaden the organization’s focus to welcome and support less impaired people too. I also want to bring some attention to the plight of adults on the spectrum, many of whom grew up with no awareness of autism at all.
At one end of the spectrum autism may seem like a total disability. At the other end, autism can enable us in some ways while crippling us in others. It may seem like less impaired people need fewer services and less support, but it’s more correct to say their needs are just different. For that, they are no less real. I hope people everywhere can learn and share from one another and in doing so, all our lives may be enriched.
Jonathan Mitchell made an excellent point in one of his blog essays. A while back, I said I wanted to be accepted for who I am, and I want to live my life like any other person, in peace. He said he wants the same thing, but his autism prevents him from “living like anyone else.” To do that, he needs help remediating some of the disabling aspects of his own autism. However, at this moment, the help he needs does not exist because science has not yet found the answers. As a member of Autism Speaks, I will do my best to advocate for research that can help people like Jonathan live better lives.
I believe each of us should be free to choose therapies or treatments – nothing should be forced upon us. After all, what works for me may do nothing for you. But before we can make those choices, viable therapies must exist. In today’s world, the workable solutions for autistic disability are far too few. I believe Autism Speaks is committed to funding research to find the answers we need.
At the same time, we want and need greater public awareness of autism. Autism Speaks has done a great job raising awareness but there’s a lot more to be done.
There may not seem to be much common ground between the extremes of neurodiversity and those who seek a cure, but I’ll find what there is and try to build more. I hope everyone can see the potential if we can all rally together in pursuit of a common goal.
Whatever our differences, there are many things we can all agree on, such as the need for greater acceptance and opportunity for people with autism. We have issues with schools, jobs, and even the way the law treats people on the spectrum.
As always, I am here to respond to your questions and comments. I look forward to a new level of interaction with this community and the larger community Autism Speaks has built.