May 17, 2012

When I started fundraising for National Alliance for Autism Research (NAAR) in 2001, I thought: a few years of research and they will have a cause and a cure.  So, here it is, 11 years later and I am attending IMFAR, my first conference on autism research, as a grantee from Autism Science foundation.  After one day,  I don’t think identifying a cause or causes let alone a “cure” is a few years a way.    However, there has been a huge amount of research that has lead to greater understanding of the disorder and all its attributes.

The IMFAR morning keynote presentation by Ruth Feldman, Bio-behavioral Synchrony and the Development of Social Reciprocity, reviewed several studies that focused on bonding, social exchanges and rules, and the back and forth (synchronicity) between mother and child. She said that during the first 3 months of a child’s life the bond is physiological.  Oxytocin is crucial in this bonding and low levels in the mom result in low levels of touch and gazing, which impact attachment.

She also talked about mothers who seem to have more instinctual synchronicity compared to mothers who are intrusive.  I figured I was an intrusive mother – that is, not falling into the rhythm of the baby.  Intrusive mothering results in anxiety and vigilance and a disorganized brain in the child.  Conclusion: optimal levels of oxytocin in both mom and dad  and child are a significant component to development of social reciprocity.   And here is a report from Yale. After that I was hoping there would be free samples of oxytocin to take home.  (Note to IBMers – this conference is nothing like Lotusphere or SXSW.)

Before the lunch break Autism Science Foundation gathered the grantees for a group photo and posted on their ASF blog.

I then attended the session on friendship through the life span.   The presenters reviewed research that confirmed my own belief in how important friendships are to the quality of life.  Friends are not companions, acquaintances, or classmates.  Friends are people with whom you have intimacy, trust, and shared emotional experiences.  They are people with whom you have stable and durable relationships.  (I remember a parent of a middle school aged boy said her son declared: “I have 23 friends and none of them like me” . Probably his teacher told him his classmates were his friends.  Don’t you just hate that condescension?)

Research showed the value of “mixed” friendships where one child had ASD and the other was DT (developmentally typical), but they don’t happen without assistance. The researchers recommend that friendship should be a mission in early intervention and throughout a child’s education (it should be in your child’s IEP).

Researchers reported that teaching and coaching for friendship proved successful.  But that friendship could note be forced.  Friends had to consider each other their equal, that they have affection and commitment towards each other, and that they shared interests.  So, my conclusion is that “volunteer” friends don’t qualify as true friends.  I personally can attest to that as my daughter knows that the volunteers in Friendship Circle are not very committed or engaged with her.

One of the researchers reported on the effectiveness of play coaching, and for example, how to join an ongoing group, and understanding that winning is not as important as being liked.  The best indicator of potential in friendship was the cognitive ability for abstract reasoning.

They talked about quality of friendship.  Since my daughter enjoys the company of her girlfriends but still engages in parallel play, this did not seem to be considered “quality” but I still think she values it.  So the question is, what is quality?  I would like to see more interactive conversations but I know that is hard for her.

Finally they talked about friendships for adults with ASD.  Here is when I needed a tissue.  The social life of people with ASD and ID is horrible (not a scientific term) and yet adults yearn for friendships.  Even people in group homes said they did not have friends.  Just because you live together and are required to all go bowling together does not mean you are friends with your housemates.

In the afternoon I attended a session on cognition and behavior across the lifespan.  I probably understood 33% of what was said.  The researchers reported on auditory and visual processing, on multisensory processing, posture and balance and implications for socialization, and motor impairments and social impact.  The net is that there is a correlation with the sensory system and social skills.

It takes a lot of work to understand what is being presented, to take notes, and to Tweet.  Parents are not the target audience and we may make up probably less than 5% of the audience.  But some of the researchers came to me during the cocktail reception to tell me they appreciated that I asked questions during the Q&A session.   Well this was a big effort for me to come to this and I feel I need to get something out of it – and besides my dad told me my whole life:  “there is no such thing as a stupid question; if you don’t know, ask.”  Thanks Dad.  You must have had the right amount of oxytocin.