More catching up...
Greetings from Cold Spring Harbor, New York--
I have started to post a series of “catch-up” blog entries. Please forgive me for being away from the community for so long. I’ve been checking in regularly but haven’t been able to post on my blog again until a couple days ago. I have been traveling constantly ever since the CAN/Autism Speaks merger became final in February. I have been going to meetings, work shops, grant reviews, etc., in an attempt to insert myself into heart of the new hybrid organization to ensure that the passion and urgency of parents is just as much of a driving force as it was at CAN.
During the past few months I’ve been in Cleveland, Philadelphia , Houston, Chicago, Seattle, and San Francisco – some places for a week at a time. Right now I am in Cold Spring Harbor, New York. Cold Spring Harbor lab is a place where specialized research workshops are given and attended by invitation only. This year there is an autism workshop and I am a speaker but I am also attending the workshop to get up to speed on the latest research. There are 23 students attending the workshop and all have made the decision to make autism their life’s work. The workshop goes from 8:30AM to 9:30PM daily for 8 days. Tonight we heard a lecture by Isaac Pessah from the MIND institute, telling us about the toxins that are allowed in our environment (pesticides, etc) that can have an effect on neurodevelopment.
While I have been traveling, I have been working on the “how-to get started pointing” document and I have recently finished writing it. I have submitted the manuscript to a number of parents, therapists and teachers to get feedback.
Our web master Stephan has been busy creating a feature that will allow us to upload video directly on to the community site. Please start taping your baseline videos as soon as possible. I will be posting an announcement calling for baseline videos but feel free to start taping any time. I am really looking forward to posting the “how-to” in the next few weeks, as soon as I’ve gotten the feedback I have requested and incorporated it. Also by then the video feature should be up and running.
I am going to be continuing to catch up on my blog and will add more in the coming days.
Giving a talk at UCLA:
In April I gave a talk to the class taught by Olga Solomon, a linguistic anthropologist. I met Olga a few years back and was astonished to learn that she and her mentor MacArthur Award recipient, Elinore Oches has collecting hundreds of hours of video data of children with autism and their families. The project consisted of several studies, the two which I first became aware of were one that was the collection of video-tape data of children with ASD who were mainstreamed in school, looking at their attempts to communicate and socialize in the school setting. And second a similar project looking at the family dinner at home and the children’s attempts to communicate and socialize within the home setting. These studies showed that children with ASD made many MORE attempts at communication and socializing than their typically developing peers and siblings but that most of these attempts went undetected by those around them. I was shocked to discover it going on right in my own back yard at UCLA. Why hadn’t I heard of this work before? It was because Solomon and Oche’s research articles appeared in anthropology journals and I was searching in medical and scientific journals that appear in the National Library of Medicine online archives, also called PubMed. Pubmed is a very useful resource for keeping up with the latest autism research. PubMed:
The fact that such a valuable body of research as Olga and Elinore’s is not at least cross-referenced with medical and scientific journals that publish autism research speaks to the fractionated nature of the many fields which are relevant to autism research. Even the language used to speak about autism within different disciplines such as neurology, psychology, psychiatry, behavioral neurosciences, etc. is not consistent or even in agreement. For example ‘joint attention’ has different meaning in the context of different disciplines. There is even less consistency of language when you get into the clinical realms, ie speech and language therapy, occupational therapy, sensory integration therapy, applied behavioral analysis, etc. I think it would help the whole field of autism research there was an agreed upon common language used by all the different disciplines and interventions.
And what does anthropology have to do with autism, you might ask? Anthropology is from the Greek: anthropos, "human being"; and logos, "knowledge". It is the study of humanity. Autism is one form of humanity that in my opinion needs much more study!
I see autism as this: some time between the ages of 6 and say 24 months of age (on average) the child’s brain goes off track of being able to synchronize with other people, and the child in effect becomes socially isolated. What is culture but the product of socialization? Therefore I think anthropology, the study of culture, or social adaptation within groups is a perfect glass through which to try to understand autism. You can read some of Olga and Elinore’s autism related papers in ‘Interviews & Video Clips’ on the Strange Son web site.
After my talk at UCLA I received very touching and impassioned e-mails from some of the students who indicated they wish to make autism their life’s work. More catching up in the next few daysĂ˘â‚¬Â¦
Best wishes to all, -Portia