Tuesday, April 19, 2011

Pooling Our Knowledge: The Hunter College Autism Symposium

This past Saturday I tried an experiment in micro-blogging: I attended the all-day Hunter College Autism Symposium with iPad and iPhone in hand and live-tweeted much of the day. I was on hand as a guest of the folks at Wellsphere and wanted to relay as much of the information as I could in the most immediate way.

The results of the micro-blogging experiment were mixed: I generated quite a few 140-character utterances tracking many of the exciting findings presented. But there were some real problems. My tweets fell victim to the absurdities of auto-correction and my own limited iPad keyboarding accuracy. #asd conference become #ass conference. Not good. Dr. Siller became Dr. Sillier, and then Dr. Duller (and I can assure you that Dr. Siller is neither silly nor dull.) And finally, when reporting on clinical results of a parent-training intervention, one of my tweets incorrectly reported that significant results were found among non-verbal kids younger than 15 months when, in fact, the finding applied to kids who had some language at 15 months.

The experiment revealed for me that micro-blogging is a limited medium. That said, I'd do it all over again to be able to share some of the amazing research that the folks at the Hunter College Autism Center and the Weill Cornell Autism Research Project (WCARP) are working on. Maybe next time I'll be tweeting from a Macbook Air, and thus a real keyboard sans iOS auto-correct, but in the meantime, let me reflect here on some of the highlights of the day:

"Translational science" — Have you ever heard of "translational science"? I hadn't, and was immensely interested to learn about this model that "moves research from the lab bench to the bedside to the community." Okay, so bedside isn't exactly apt for a syndrome like autism, but you get the picture: the folks at the Weill Cornell College of Medicine and the Hunter College Autism Center are building bridges between research scientists, clinicians, interventionists, and families affected by ASD. In the process the experiences of parents and practitioners (which might otherwise be dismissed in a pure science context as "anecdotal" or "n of 1") can be reported and assessed, refracted, and considered through clinical and experimental lenses while, reciprocally, laboratory science is infused with the hands-on experiences of families and practitioners.

Exercise and brain function A fascinating connection regarding the role of exercise in brain function came from Dr. Barbara Hempstead during a Q & A session. Hempstead's work is on alterations in the metabolism of Brained Derived Neurotropic Factor (BDNF), a chemical involved in linking and impairing synaptic connections. Hempstead shared that in laboratory studies (mouse models) one of the fastest ways to increase BDNF in the brain (and blood platelets) is to give the mouse an exercise wheel and let them run. Could the well-documented phenomena of "runners" -- autism kids that run off -- and "wandering" in adults with Alzheimer's disease be in part a self-regulating attempt to generate BDNF? Hard to say, but it makes some sense. I couldn't help but think of Charlie Fisher's marathon bike rides with his dad, and of my own father's epic wandering as his brain function declined.

inclusive education: Dr. Shirley Cohen, co-founder of the Autism Nest Program (with Dorothy Siegel of New York University) and founder of Hunter College's Autism Center, shared how the ASD Nest program is now functioning in 22 New York City schools. Based on the Collaborative Team Teaching model and designed for students who can work at grade-level but need services and supports, Hunter College has been training teachers to serve in the program. The ASD Nest Program is a model for inclusive education for kids on the spectrum.

bridging the ABA/DIR divide: The debates on the merits and shortcomings of ABA and DIR have circulated among parents and interventionist for years, but a presentation by Dr. Michael Siller suggested that there are many overlaps between these interventions when they are put into practice. Siller pointed out that while traditional discrete trial ABA differs from the developmental intervention models, more contemporary, naturalistic uses of ABA have many aspects in common with DIR/Floortime. In a lunchtime expert panel on interventions, Dr. Shirley Cohen remarked that when the key protocols of naturalistic ABA were presented to her trained team of graduate students with the title "Applied Behavioral Analysis" removed, students could not find any substantive difference between the behavioral and the developmental or relational. Dr. John Brown spoke about the use of formal scripts in training kids on the autism spectrum and how protocols are being developed to introduce scripted language and then fade the scripts so that more naturalistic language can occur. The limitations and value of both ABA and DIR/Floortime were highlighted, as was the importance of considering context when dealing with "interfering behaviors." Dr. Jamie Bleweiss made the powerful observation that "problem behaviors come from problem contexts" and demonstrated how an array of variables need to be considered when assessing the triggers of any behavior that interferes with necessary daily activities.

joint attention studies: Joint-attention (between parent/caregiver and infant) is foundational for language development. Dr. Siller's presentation on parental responsive language (the role of parents in fostering joint parent-child attention) was immensely interesting.

My longtime autism parenting ear is keenly attuned to the "blame the parent" modality of many psychological settings, so it was fascinating to hear Siller underscore that autism parents mirror their children's utterances just as do the parents of typically developing kids. Some parents mirror more, some mirror less -- but the lack of joint attention is not a consequence of bad parenting.

That said, given that joint attention deficits for ASD infants and their parents impair language development, Siller has developed a parent training program to boost parental responsive language. Siller reported that this parenting training intervention had positive outcomes for children who had some language at less than fifteen months of age, but showed no results for those who were non-verbal at fifteen months.

neuroplasticity and brain sculpting/pruning: The phenomenon of larger than average head size and brain over-growth in ASD kids (or the lack of typical culling of neural networks during the 12-24 month period) was discussed by neurologist Barry Kosofsky. A question as to whether there is only a short window of neuroplasticity when interventions can work came from the audience. There was a very interesting answer from one of the panelists: fluoxetine (Prozac) has been shown to increase neuroplasticity in animal experiments. What this suggests is that it is at least theoretically possibly to extend (or re-open) the windows for possible biological or behavioral/relational interventions. While scientists once thought that brain development was something that concluded (or slowed so significantly as to be negligible) new work on neurological plasticity suggests that the door for change doesn't shut at age 2 or 3 or 4 or maybe ever. That said, earlier interventions still have the greatest impact, thus there was considerable discussion of early detection.

early detection, diagnosis, and interventions: Identifying kids at risk for developing ASD was discussed across the conference. Dr. Emily Forrest shared how the American Academy of Pediatrics has adopted a protocol for pediatricians to ensure that infants are assessed for ASD in the routine, if hectic, context of the 15-minute well-baby check-up. Can I just say that I so wish that such a protocol had existed when our girl was in her infancy and toddlerhood? Just a little over 10 years ago, our pediatrician was at a loss to explain our girl's screaming for hours on end (so-called colic), her extreme startle response to sudden sounds, her difficulty with feeding, her complete lack of interest in (and even annoyance at) hearing a book read aloud.

When our girl's speech was not developing like that of other babies among our friends and neighbors, our pediatrician dismissed my concern: "Don't worry, she's just late talking." When, at the urging of an experienced pre-school teacher, we finally consulted a speech and audiology clinic and received a report that described our girl as having "perseverative play" and "echolaliac speech," our pediatrician said that she couldn't really comment because she hadn't written the report. She didn't even suggest a referral.

When I think back on this, it seems so, well, cruel and senseless and overdetermined. (Overdetermined is sociology-speak for events that result from many converging factors.) We were first time parents trying to figure out how there could be anything at all "wrong" with our dear girl. Our pediatrician was overworked and underpaid (perhaps because she was in-network). And I was in graduate school, so we really didn't have the resources to go out of network. Part of the long uphill battle for a differential diagnosis for our girl came from the structural convergence of these factors: an ill-equipped pediatrician, a shortage of developmental pediatricians, and the prohibitively high cost of a developmental assessment that would not have been covered by our HMO. Add to that the way that a language delay in a girl does not look as pronounced as it would in a boy. Since girls typically develop language earlier than do boys, our girl's delay may have been really extreme when compared to typically developing girls, but barely noticeable when compared to a normative group that included boys.

Forgive my digression into recollections of the distant past and our girl's diagnosis. I'm so glad things are somewhat better for families faced with these issues now. Autism awareness has come a long way in ten years. Even so, Forrest and others shared that there continues to be a shortage of developmental pediatric specialists. In a sidebar I learned that this is in part because developmental pediatrics is the lowest paid pediatric specialty. Pediatrics is already a poorly paid specialization. Makes one wonder how we as a society actually value the care of our children —and how much less we value the care of the "defective" ones.

As a consequence of this shortage of medical expertise and lack of access to the limited supply of physicians, special educators who work in Early Intervention often find themselves providing informal diagnostic information. In a sense they become the first responders when developmental pediatricians, psychiatrists, neurologists and other professionals who are formally qualified for these roles aren't available. Dr. Jennifer Cross shared information on gaining access to the Early Intervention services that are mandated by state and federal law. Anyone involved in a child's life — from a parent to a pre-school teacher — can request Early Intervention services. This partly mitigates the detection and diagnostic pitfalls of our current system of medical care.

Earlier and more accurate detection and diagnosis was also the topic of Dr. Catherine Lord's keynote presentation on the use of ADOS (the Autism Diagnostic Observational Schedule), the diagnostic tool that she developed with her colleagues in Wisconsin. Lord's presentation was fascinating in many ways, but her clinical videotapes that showed children who were being evaluated for ASD and other developmental issues were particularly fascinating. Lord has been working with some of these children and their families across many years, so videos from toddlerhood to adolescence showed the trajectory of development and the remarkably varied outcomes. I wish I could share these videoclips with you, but I'm fairly certain that they are not cleared for blog distribution. Clinical videos on early detection from Dr. Tricia Striano were also fascinating, and showed early indicators of ASD — subtle clues that might be observed by a trained clinician or an experienced parent knowledgable about typical development. Some of Striano's videoclips —"What Infants Have to Say About Autism" — are online at www.infancyresearch.com.

the pressing need for programs for autistic young adults represents a career opportunity: Dr. John Brown noted, for students in the audience and currently in school, that "if you're looking for job security in a bad economy, work with adults on the autism spectrum." There is a serious unmet need for transitional services for the kids who will be moving out of high school and into adulthood. Families like mine, with kids born in the late 1990s, will be aging out of high school in just four or five years. Our cohort had limited diagnostic, intervention, and educational opportunities available when they were pre-school and school-age. Now that they are in their early teens, the programs to serve them in the next stages of their lives are as radically insufficient as the diagnostic, intervention, and educational programs were just a decade ago.

• • •

My experiment in tweeting the Hunter Autism Symposium was also insufficient. It was akin to trying to feed a fire hose of information into a soda fountain straw: not exactly a total failure, but sputtering and spotty. Even a very long blog post like this one is not really adequate to all that was shared last Saturday.

I hope other parents or professionals who attended the symposium will share what they learned on Saturday — either here in the comments, or cross-posting from their own blogs — so that we can have as many angles on the day as there are ways to think about autism. And I truly hope that the Hunter College Autism Center will post videotapes of the presentations online for others to see. With multiple streams of information flowing into a common pool, our knowledge has a chance to deepen. That sort of pooled knowledge is exactly what the emerging model of translational science has in common with the open access world of autism blogging.


r.b. said...

Thank you for going through so much trouble to put this out there.

MothersVox said...

@r.b. No trouble at all. It was a real pleasure to write about this event. I hope it's helpful to families with kids on the spectrum.

Anonymous said...

Great summary of a great conference! J

MothersVox said...

@anonymous So glad if the summary is helpful. There was so much to report that I may do another post-symposium post. The did a great job on the conference!