Now for something complete Gary Numan

I forgot that sometimes I just like to post things I love. Like Gary Numan. 

IMFAR: day one lecture notes transcribed (1/5)

These are just SOME of my notes as I am transcribing them. I am posting them straight without commentary for two reasons:  maybe someone can connect their own dots and I will not have to type everything twice. This is just a block from the first quarter of day one at IMFAR! I will process and comment with some additional information I gather after I figure out what the heck I wrote in the first place. Enjoy this appetiser.


DAY ONE

IMFAR conference purpose: identify questions, methodology, and collaboration




Geri Dawson (Chapel Hill) Autism Speaks


• Improve lives: detect, translate, treatment, disseminate


• PREVENTION? “INVESTMENT”?


• $170million in research support


• Top –bottom research


• Discover risk factors


• Method detection


• Quality of life for adults


• Drugs (for profit and non-profit)


• Novel treatments


• Dissemination to community esp. “underserved”


• AGRE genome project


• Use of rat models


• Outcome measures


• Toddler Treatment Network (17 medical centers serving 22,000)


• 34 countries


• DSM V funding two studies effects on prevalence and diagnostics






Alan Parker Simons Foundation SFARI


• Many areas: math, computers, physical science


• Check website for news stories


• Simons Simplex Collection


• De Novo gene disruption: 7q11.23


• Simons VIP


• Making bio-collections available to others


• List of over 200 implicated genes


• Identifies variant sequences


• Protein interactions


• Strength of research on risk factors


• ??animal models??


• sfari.org




Keynote Speaker: Ruth Feldman (Yale, Israel)
Bio-behavioral Synchrony and the Development of Social Reciprocity- Implications of Clinical Practice OXYTOCIN


• OXTR oxytocin receptor gene


• Martin Cooper “Face Menu”


• Bonding is selective and enduring for survival of species


• Types: peer, parietal, filial


• Rules of social exchange are learned


• Capacity for empathy


• Studies are emerging and intensifying BEHAVIORAL


• Synchrony- collaborate and build societies like ants, schools of fish, and sharks


• 4-channel


• Behavior to biology


• Mother/parent provide bio-cues and social cues building bonds to eventual social bonds (w/in time limit early pregnancy to 1st year of life)


• Post-partum behavior essential


• Mother’s body is a bio-regulator/ function to regulate


• Grooming- relaying heavily on tactile contact translates to “social” touch


• Gaze, motherease, affect, affectionate touch, social contingency program newborns


• Infant scanning used to detect


• Mothers provide stimulation


• Looking for phenotypes- gaze synchrony, parental touch


• At 3mo active with face to face “dance-like”


• 3-9mo CRITICAL to maintain gaze and tolerance, synchrony remains (affect and rhythm)


• Basic quality of interaction set in first few months


• fathers stimulate with novelty


• Mother framed w/ gaze


• OXYTOCIN in hypothalamus: social interaction, theory of mind, stress reduction (interacts with dopamine)


• Works in loop: more oxytocin = more touch = more oxytocin etc.


• Doesn’t readily cross blood/brain


• PNS CNS


• Early studies using plasma samples not brain


• Amounts varied but stable within individuals


• Tells about “openness”


• NO difference in levels of men and women (parents)


• Increased during bond formation of pregnancy and immediately after birth


• Also seen in the first 3mo of “falling in love”


• Not significant after 3yrs (in parent interactions)


• Types: parental, best friend, romantic


• CNS PNS coordinate (effect one and or both)


• Use oxytocin nasally in studies


• ASD related to oxytocin function (reciprocity and pathways CNS PNS)


• CD38/OXTR/rs3796863/rs2254298/rs1042778 (co-morbidity w/ depression)


• ASD levels markedly lower


• When parents low, children low


• Does it effect girls consistently?


• What happens when genetic risk is identified???


• Birth – 5yrs


• Double blind research- administered to parents not children b/c of parallel effect of oxytocin (high risk infants), co-evaluation of mother and father care


• Longer gaze


• Synchrony uses mirror neuron NOT rt. amygdala, longer duration, more organized activation


• intrusiveness and gaze aversion uses amygdala not mirror neurons “choppy”


• coherent vs. disorganized anxiety


• temporal, parietal


• studies in post-partum depression

Dibble Dibble Dop!

These are just SOME of my notes as I am transcribing them. I am posting them straight without commentary for two reasons:  maybe someone can connect their own dots and I will not have to type everything twice. This is just a block from the first quarter of day one at IMFAR! I will process and comment with some additional information I gather after I figure out what the heck I wrote in the first place. Enjoy this appetiser. Also, I had the privilege of taking all my notes in a beautiful little journal made by one of my bestest best, Nonna Clancy (psst, that's a nickname). She is a very talented book conservator and binder. And, she is generous. I am the proud owner of her work as are The Dumplings.


DAY ONE


IMFAR conference purpose: identify questions, methodology, and collaboration




Geri Dawson (Chapel Hill) Autism Speaks


• Improve lives: detect, translate, treatment, disseminate


• PREVENTION? “INVESTMENT”?


• $170million in research support


• Top –bottom research


• Discover risk factors


• Method detection


• Quality of life for adults


• Drugs (for profit and non-profit)


• Novel treatments


• Dissemination to community esp. “underserved”


• AGRE genome project


• Use of rat models


• Outcome measures


• Toddler Treatment Network (17 medical centers serving 22,000)


• 34 countries


• DSM V funding two studies effects on prevalence and diagnostics






Alan Parker Simons Foundation SFARI


• Many areas: math, computers, physical science


• Check website for news stories


• Simons Simplex Collection


• De Novo gene disruption: 7q11.23


• Simons VIP


• Making bio-collections available to others


• List of over 200 implicated genes


• Identifies variant sequences


• Protein interactions


• Strength of research on risk factors


• ??animal models??


• sfari.org




Keynote Speaker: Ruth Feldman (Yale, Israel)
Bio-behavioral Synchrony and the Development of Social Reciprocity- Implications of Clinical Practice OXYTOCIN

Paraphrased overview from program book: Cconceptual model of bio-behavioral synchrony (the coordination of psychological and behavioral response between attachment partners during social contact), theoretical and empirical framework for the study of attachment bonds and origins of social reciprocity. Study of hormonal response in the form of gaze, vocal, affective, and touch modalities. OT oxytocin provides the neurohormonal substrate for parental, romantic, and filial attachments. Various forms of close relationships express similar synchronized behavior and OT increase and is mutual-influencing among close partners. OT is linked to distinct patterns of brain activation and genetic markers. The use of OT and behavioral interventions for social disorders in early childhood are implicated in increased human affiliation, social reciprocity through the matrix of biological attunement and close behavioral synchrony.


• OXTR oxytocin receptor gene


• Martin Cooper “Face Menu”


• Bonding is selective and enduring for survival of species


• Types: peer, parietal, filial


• Rules of social exchange are learned


• Capacity for empathy


• Studies are emerging and intensifying BEHAVIORAL


• Synchrony- collaborate and build societies like ants, schools of fish, and sharks


• 4-channel


• Behavior to biology


• Mother/parent provide bio-cues and social cues building bonds to eventual social bonds (w/in time limit early pregnancy to 1st year of life)


• Post-partum behavior essential


• Mother’s body is a bio-regulator/ function to regulate


• Grooming- relaying heavily on tactile contact translates to “social” touch


• Gaze, motherease, affect, affectionate touch, social contingency program newborns


• Infant scanning used to detect


• Mothers provide stimulation


• Looking for phenotypes- gaze synchrony, parental touch


• At 3mo active with face to face “dance-like”


• 3-9mo CRITICAL to maintain gaze and tolerance, synchrony remains (affect and rhythm)


• Basic quality of interaction set in first few months


• fathers stimulate with novelty


• Mother framed w/ gaze


• OXYTOCIN in hypothalamus: social interaction, theory of mind, stress reduction (interacts with dopamine)


• Works in loop: more oxytocin = more touch = more oxytocin etc.


• Doesn’t readily cross blood/brain


• PNS CNS


• Early studies using plasma samples not brain


• Amounts varied but stable within individuals


• Tells about “openness”


• NO difference in levels of men and women (parents)


• Increased during bond formation of pregnancy and immediately after birth


• Also seen in the first 3mo of “falling in love”


• Not significant after 3yrs (in parent interactions)


• Types: parental, best friend, romantic


• CNS PNS coordinate (effect one and or both)


• Use oxytocin nasally in studies


• ASD related to oxytocin function (reciprocity and pathways CNS PNS)


• CD38/OXTR/rs3796863/rs2254298/rs1042778 (co-morbidity w/ depression)


• ASD levels markedly lower


• When parents low, children low


• Does it effect girls consistently?


• What happens when genetic risk is identified???


• Birth – 5yrs


• Double blind research- administered to parents not children b/c of parallel effect of oxytocin (high risk infants), co-evaluation of mother and father care


• Longer gaze


• Synchrony uses mirror neuron NOT rt. amygdala, longer duration, more organized activation


• intrusiveness and gaze aversion uses amygdala not mirror neurons “choppy”


• coherent vs. disorganized anxiety


• temporal, parietal


• studies in post-partum depression

When it rears it ugly head or great last day!

This morning I woke up early to attend a group focusing on the female profile within ASD. Can't imagine getting a more perfect and pertinent topic for a woman on the spectrum with twin girls on the spectrum. So, I made my way through the deserted Saturday morning streets of Toronto's financial district . It reminded me of the possible beginning of a George Romero movie. All is quiet, and then ZOMBIES! I made it to the Sheraton without a single bite mark by 7am. I figured it was going to be one of the most personally rewarding seminars of the weekend. But... then... when we were all streaming into the conference room someone suggested group circles. I froze. I could suddenly recall every group circle I'd had been in since about second graded streaming by my eyelids like a high speed slide show. And, then I left. I couldn't handle the butterflies that started or the tension rising in my shoulders. What if someone asked me a question? Were we going to take turns? I didn't want to play. Those are the times I feel disappointment in myself. Did I just miss a great opportunity simply because ten other people might ask me to say my name? Yes. However, I waited until after its completion to go back,  taking a moment to briefly explain the structure made me uncomfortable. It is NEVER my intention to insult anyone by turning away from them while they are talking. I wanted to make that clear to the VERY nice people directing the group. I did put my name on an email list. And, I hope more information can be found online after the fact. It is one of my main directives to work more with young girls on the spectrum in my community. Lending my positive experiences and mistakes up as life lessons to them. More research on my part will only strength any programs created in conjunction with others here in Erie, like Janet Pawlowski.

The keynote speaker of the day was Alan Evans discussing the Structural Connectivity in Neurodevelopment. Now, this is my kind of brain candy. When working on my degree in Liberal Arts with two minors at Penn State, one of the minors was psychology. While studying psychology, I realized most facets are still too closely rooted in its philosophical origins and loosely subjective. Then came neuropsychology and neuroscience to save the day. I still have a soft spot in my heart for those subjects. Plus, working in a surgical intensive care unit now makes me very familiar with many of the tools used in the research like MRIs and EEGs. Studies like these put into words the feeling I have that my brain is functioning differently. I am seeing, hearing, deducting differently. Is it the more gray, less white? Less calories with better taste? Is that possible? Yes, and show me! Please. Again, once I go over my notes (translate my handwriting which is ridiculous to even me, the stenographer), I will break down each session, retelling with my opinions inserted here and there. Can you see my brain was like an open bottle of vinegar duct taped to an open box of baking soda? I do wish I would have extended myself more to the other grantees.

The ride home was a labor. It is Victoria Day weekend in Canada, which apparently means everyone hits the road to go open up their cottages sprinkled along the Lakes. Stop and go for the first half. Then an hour at the border. I tried to remain patient, but the idling use of gas kills me. The border guard was rude, but he didn't hassle us. I had the wherewithall to realize he probably wasn't in the mood for jokes about tropical birds, ash beetles, zebra muscles, or illegal immigrants. I am surprised Kristy Korea didn't haul off and punch me a few times this weekend, especially while driving with me. This is a shocker, but traveling with me or spending more than eight consecutive hours with me can be a bit trying. I'll admit I can come across as argumentative and less than patient... often.

I arrived home to find two little mermaids in the bathtub. The two main reason why I went to IMFAR in Toronto this weekend. Sine greeted me with a song. A complete song. And, even thinking about that now chokes me up a little. It doesn't sound like a big deal, but Sine usually can't maintain an interpersonal exchange like that long enough to complete even half a song. She was telling me she missed me. Cosine showed me her digger bee "bite". At bedtime, I took the girls up separately-- reading to each of them alone. They rarely get to spend time with me one on one, letting me get to know them each better. I am thinking it needs to happen more to help Sine with her reading/phonetics delay without slowing Cosine's second grade reading level down. But, it lets them each talk to me uninterrupted. And, the three of us all need some communication skills practice!

When we were finally all in bed saying our good nights (Daddy needed a motorcycle ride after three days with the girls alone), I was reminded again of why I do EVERYTHING I do. Cosine rested in the crook of my arm while asking me whether or not Sisyphus died, what the peak of the mountain looked like, and how big was the boulder. Oh, and did he wear a toga like Greeks and Romans. I tried my best to fully answer them all. Sine, as she lay draped across my belly, asked me if the Earth would exist in the future and what color the Sun would be as it started dying. We discussed how Earth would burn up as the Sun expanded and how new planet & suns could form from the dust and gases let over. Then we talked about things most five and a half year old girls talk about-- princesses. More specifically Ethiopian princesses as we listened to the aria of Aida by Verdi. I may not be a typical mother, but I am a good mother. One glad to be home with her Dumplings.

IMFAR so far

We arrived in Toronto on Wednesday... late. As I expected, I started talking about something on the 401 and completely forgot to get off on the 427. But, now, I know a guy who knows a guy on the Westside of Toronto who makes a great falafel. Thank goodness, Kristy Korea was able to keep me sane. And, force me to laugh now and then. The best jokes are born out of increasingly stressful situations. Just ask Groucho Marx. We managed to get checked into the hotel by 9:30pm. Feeling hungry and deserving of a beverage, we went to a place called Jack Aster's. We chose that bar, because nowhere else near by seemed open. Geeesh, there were at least five TVs in every square foot in the place. Thumping music blaring. And, all I wanted was a sandwich. I ordered a basket of bread. We left, returning to the hotel. The Strathcona, built in the 1940s, has been refurbished to look kind like an Ikea showroom. The room is simple, but that is all we need. By the time I fell asleep, I was already missing my daughters. However, not as bad as when I went across the country to San Francisco.

On Thursday, I woke up early. Showered and hit the pavement (after dressing, Canada is liberal but not THAT liberal). I made a promise to myself I would utilize this conference to upmost. I got to see the introductions by the IMFAR, Autism Speaks, and the Simons Foundation representatives. Then I was able to catch the keynote speaker, Ruth Feldman speak on Bio-behavioral Synchrony and the Development of Social Reciprocity.  Then I sat in on an Invited Educational Symposium about Friendship in ASD throughout the Lifespan. That cluster of discussions included: The Beginning of Friendship- Friendship in Preschoolers with HFASD, Using Parent Supervised Play Dates to Improve Peer Relationships for Elementary School Children with HFASD, Friendships in Adolescence: Developmental Challenges in Those with ASD, and Friendships and Social Activities in Individuals with ASD in Adulthood. After, I had my photo taken with the other grantees. The representatives for Autism Science Foundation have been very friendly throughout these couple of days. Again, I would like to express my gratitude for the opportunity this granted provided. And, John Elder Robison for posting the link which motivated me enough to apply.

After a pizza break, I went back for the award ceremony. I would like to say I snuck Kristy in so she could have somewhat of an idea as to how I am spending while she had the opportunity to explore Toronto-- but I would never do that. I found Susan Folstein to be someone I would like to know more about.  Her work with twin studies and ASD parents with ASD children are very close to home. I absolutely LOVE that Temple Grandin took the time to emphasize more work be done on sensitivity issues. Mostly, because that is THE main thing I feel is most important to the person with ASD themselves. Sure, in a social world one has to learn to socialize and communicate. But, that is difficult to even consider when you are being bombarded by sensory issues. And, if more research is to be done on sensory issues, we have to move a little further out of the nursery with our test subjects.

We returned to the hotel for some pub food and an early bedtime.

I woke up this morning early enough to see Susan Daniels from the NIH. That was informative. Tracking the data and the funding. Something more concrete to soak in. How much are they spending on autism research? Now I know where to look, www. iacc.hhs.gov.  Michael Lake from the Canadian Parliament then gave a few words of encouragement to the field of research. After that, I got to listen to Bernie Devlin speak about the Common and Rare Genetic Variants in the Etiology of ASD. Even when I was studying the basics of neuropsychology, I always found myself drawn to the biology of the codes animo acids to build the enzymes needed to regulate EVERYTHING in our body. He was pretty engaging. Next I sat on a symposium focusing on Biology-based Classifications and Predication in ASD: Promises and Pitfalls.  It included: Critical Clinical Needs in Classification and Prediction in Older Children, Adolescents, & Adults with ASD, Analysis of Imagining Patterns Using Pattern Recognition Methods, and Cognitive Neuroscience Approach to Early Identification of Autism. I, unfortunately, didn't stay for the last presentation. I needed some lunch.

After lunch I bopped around a little between conference rooms to catch a bit of things all happening at the same time under the catchalls of Core Symptoms and Early Developmental Processes and Trajectories in ASD: Infant and Toddler studies. The presentations I saw were as follows: Developmental Course of Symptom Severity in Preschool Children with ASD, Assessment of Social Communication in Infants a High Risk for ASD, "Sticky Attention" in Autism, Developmental Trajectories of Attention to Social & Non-social Events as a Function of Chronological & Mental Age in Children with ASD, ASD Toddlers Present Deficits in Their Ability to Track Social Cues of Others, Measuring Interactive Developmental Pathways in ASD, Unique Acoustic Characteristics of Children with ASD, and Motor Development and Its Relation to Cognitive and Language Development in Children at High Risk. Next, I attended an update on the DSM-5 recommendations. Packed! With all the controversy surrounding the changes that was what you could consider the peek of drama at a research conference. Everyone handled themselves well, though. The final block of presentations for the evening were a scientific panel focusing on the Challenges for Children with ASD in School. The first focused on transitions into school age after early interventions and on teacher/student relationships. I found this timely considering the issues I have been having with the girls preschool teacher AND that I am in the process of setting up meetings to choreograph the girls' transition into kindergarten. Next in the line up was a presentation on Academic Engagement of Minimally Verbal Children with ASD in School. I wanted to get a little insight into other ends of the spectrum, especially if I plan on doing more work within my community. After that? DINNER.

I am now listening to Kristy Korea tell me about her trip to the Toronto Art Museum, trying not to be too jealous. We'll go to dinner now, maybe heading out for more pub food and early bed. I plan on going to  one Special Interest Group at 7am tomorrow morning focusing on the female profile in ASD. Then, time to head home.

I have been taking copious notes. I will share more information and opinions once I am home. I think the drive back will be better, now I have the route in my head and just need to flip it. I can't wait to see the girls, and give them the little dresses I bought them. I have spent little money, which is good. I have been able to focus on the conference without too much distraction. But, I will have to come back to Toronto again soon. I feel like I should have extended myself to more people here. But, I didn't. I was able to navigate all the baby powder, banana, and coffee breath odors. I let people bump into me without completely losing it. All in all, good trip.

I apologize for any typos or sentence fragments. I am writing this on a foreign laptop in a foreign room in a foreign (but western) city. More later.

Great grants

Here's the link to the Autism Science Foundation website, listing me as a grant recipient. I suppose if you follow this link and then their link and then my link, etc-- it will be like holding a mirror up to a mirror.
http://autismsciencefoundation.wordpress.com/2012/05/14/better-know-an-imfar-grantee-melissa-shimek-and-meagan-thompson/

If I leave here tomorrow... oops, TODAY!

If I leave here tomorrow... oops, TODAY!

My trip to Toronto for the IMFAR - International Meeting for Autism Research is approaching quickly. I feel like I am missing something. I have had my car serviced for the drive: oil change, new fuel filter, alignment, a new spark plug for good measure, and other fluids checked as well. I have my hotel reservations, and will call to confirm shortly. I visited the hotel website many times, looking at pictures of their rooms. I looked up numerous public parking options around the hotel. I have reviewed maps of Toronto and my travel routes NUMEROUS times.  I researched rail stops, bus stops, and possible walking options. I glanced through the schedule for the Toronto opera for the weekend. I made a list of stores selling vinyl in the area.  I have a mental check list of all the items I will be taking in my bag. I've investigated the exchange rate. I researched the average temperatures for the week. This is how I prepare.

Whenever I travel, even if it is to a new place in my hometown, I look at maps. I visual the roads, the nearby landmarks, and traffic flow. I have to do this because if I don't, I will find myself in the middle of my journey freaking out. Not only will I be trying to read street signs while trying to maintain the speed limit, but the sun could possibly be too bright, a song I don't like could possible be in the radio, or I could potentially spill my coffee. It is times like those which make me realize how stressed out I can be over "normal, every day" things. I take it for granted now, after forty years. But, what appears to others as obsessive over-preparation or not "going with the flow" is simply a security blanket in the making for me. I train myself ahead of time. I make myself familiar with will happen or what could happen. However, sometimes, this translates into a rigidity once the ball starts rolling. I know there will always be unplanned events. Detours, shortcuts, delays, surprises, etc.  I try to stay flexible enough to jump over those hurtles. Although, I might look like a giraffe leaping over a mole hill, I can still do it. I can do it best when I slow eliminate the background stimulus. Focus on the change necessary and integrate it. This is where I usually get a "relax" or "what's the big deal?" from neurotypical folks.  I won't get into the quelling of rage that occurs when someone tells me to "relax".

So, hopefully, you'll have gleaned from this that I am REALLY anxious about this trip. I guess it is a big deal that I received the travel grant. I should be and am happy about it. I will try to be gracious about having my photo taken, although I don't like having my photo taken. I figure I should be receptive to other's questions. Yet answering someone's questions usually leads to them answering questions, and me having to listen. So, do me a favor people, BE INTERESTING so I can look INTERESTED! Just kidding! Yet, I am so interested in what this conference potentially holds, I've reviewed the schedule for days- trying to pick and choose between many presentations I would love to see. Some happening at the same time!