Growing Up With Autism: Life Transitions, Part 1

Growing Up With Autism: Life Transitions was the topic of this year's Weill Cornell Autism Research Project Symposium for Families and Professionals. Growing up and facing life transitions is exactly what we've been doing over here at Autism's Edges.

Autism Symposium: Basic Science Panel 
Panelists: Drs. Rajadhyaksha, Casey, Lee,
 Walkup, and Dr. Barry Kosofsky,
who convened the symposium, at podium.

In a month or so our dear girl will be graduating from middle school, and so our attention has turned to the challenges ahead: the upcoming graduation ceremony and navigating the attendant social minefields that are collective celebrations. And then there is the longer look ahead, to the hurdles that may be in store in the next stretch: high stakes standardized tests, proms and the possibility of dating (yes, this seems impossible to me, too), and, depending on how the transitions unfold, planning for college applications or whatever else seems right.

Given this happy convergence of the informational and the intimate, I was delighted to report on the Autism Symposium again. Appropriately enough for a day focused on autism and transitions, anxiety seemed to be the watchword for the  day. As anyone who lives on or near the autism spectrum knows, there is a fundamental autistic axiom that governs our lives: change is bad. Since life is pretty much ever-changing, this creates a whole array of challenges for us. The first panel of the day looked at basic science and generated insights into why anxiety is such a foregrounded feature in our lives on or near the spectrum.

"anxiety anomalies": Although Dr. BJ Casey's presentation focused on adolescence, and how the emotional and regulatory centers of the brain develop at different rates creating the volatility characteristic of teens, the big takeaway for me from her research is that treatments that work for neurotypical individuals may not work at all for autistics. In fact they might be incredibly damaging.

From Dr. Casey: Atypical development is
associated with less emotional regulation.

 Dr. Casey offered the remarkable experimental finding that in persons with ASD, the fear response is not reduced when a particular frightening object, person, or event turns out to be harmless. In a typical, or adaptive response, encountering a threat that winds up causing no harm reduces fear responses.  But in folks with high anxiety — like some of us and our kids — instead of reducing anxiety, encounters with something scary that causes no harm actually increases terror.  Her research used fMRI scans of amygdala activity to uncover this anomaly.
(If you're interested in reading her team's original research on this you can find Casey's publication on this online.)

So let's think about Casey's findings.  Say that you're autistic and you're terrified of dogs, as our girl once was. If we had treated this with exposure therapy (a widely respected treatment for phobias that gradually but repeatedly exposes you to whatever frightens you) then it's highly likely that we would have done a bang-up job of creating a super-phobia in our child.

Just imagine if our girl had been misdiagnosed as having a phobia. Imagine we had pursued exposure therapy. Or worse yet, that we engaged in the non-therapeutic parental version of exposure therapy: "You just have to get over this -- just pet the damn dog!" I shudder to think how that might have worked out. By respecting our girl's terror as genuine, and treating her general anxiety with a pharmacological intervention, we now have a girl who'd love to have her own dog.

"anxiety across diagnoses": The importance of getting the diagnosis right was underscored in Dr. John Walkup's analysis of the various multiple diagnoses (or co-morbidities) that are often assigned to ourselves or our children. Walkup described the diagnostic process as having two opposing tendencies: "lumping" vs. "splitting." "Lumpers" aim to pull together characteristics to form a category while "splitters" tend to look for the specific or distinctive characteristics of a syndrome, disease, disorder or difference. Without accurate diagnoses, Dr. Walkup asserted, one winds up treating symptoms: melatonin may work to treat insomnia, but you might be better off treating the underlying anxiety that's keeping a child awake.

From Dr. Walkup:
Diagnostic trends can create clusters or move
toward greater specificity.

Anxiety is a feature of many different diagnoses.  Consider the alphabet soup of Dx'es that our girl has had related to her anxiety: generalized anxiety disorder (GAD), obsessive compulsive disorder (OCD), oppositional defiance disorder (ODD – my personal favorite because the only thing accurate about it is that she's a little odd, though hardly oppositional), attention deficit disorder (ADD), and finally pervasive-development disorder, not otherwise specified (PDD-NOS).  In this slew of labels – or perhaps we should say "stew" –  the lumper's diagnosis would be PDD-NOS, because it also included her expressive-receptive language disorder.

We were fortunate in that her psychiatrist took the initial decision to go the splitting route: the original three diagnoses he provided (ADD, GAD, and mixed expressive-receptive language disorder) entitled her to insurance coverage that would not have been available had she been cast as developmentally-disabled. Things have changed now that insurance coverage of autism treatment is mandated, but that original split set of diagnoses got our girl the best possible combination of psychopharmacological, behavioral, and educational interventions.

"anxiety in adolescence": We're a long way from our own early diagnostic days, and with adolescence upon us, the work of Dr. Francis S.Y. Lee on anxiety in adolescence was of particular interest.  Dr. Lee's presemtation concerned the ways that in typical adolescent development there seem to be developmental  mechanisms, probably at the molecular level, to repress or mute fear response. Evolutionary biologists think these mechanisms exist to assist adolescents in taking the risks necessary to set out on their own. During such periods of fearlessness (when fearful memories seem to be repressed) the adventures that lead to adulthood can take place. (Or disasters can occur, but let's hold that for another day.)

Extrapolating from mouse models, Lee hypothesizes that there are sensitive periods in adolescence when windows of fear-memory suppression may provide opportunities for pharmacological or behavioral interventions (to re-tune the fear response that is otherwise atypical in individuals with anxiety disorders and ASD). Specifically, interventions that raise BDNF (brain derived neurotropic factor) levels may impart beneficial effects on attenuating the fear memory retrieval, and thus alleviate anxiety among the hyper vigilant.

From Dr. Lee: Adolescence is marked by periods of low
fear response, as shown in this table based on
laboratory work with mice.

You may remember BDNF from the report on last year's Autism Symposium: studies of BDNF hold promise for the treatment of multiple neurological disorders. Deficits of BDNF caused by a single genetic variation (called a single nucleotide polymorphism, or SNP for the Wikipedia readers among us) are implicated in abnormal neuronal development and conditions including autism, depression, anorexia and bulimia, and Alzheimer’s disease. BDNF can be boosted in various ways (for example, exercise has been shown to increase BDNF).

Dr. Lee's research, along with the transitional model for drug discovery described by Dr. Anjali Rajadhyaksha, hold out the possibility of new treatments.  Instead of simply reducing excessive anxiety with ongoing medication, new medications might modify the chemical mechanisms that make anxiety so dominant in autistics and their families.

The big takeaway from the basic science panel is that while anxiety itself may be unpleasant, in itself it is not the problem.  Rather, as Dr. Walkup pointed out, it's the life-limiting avoidance coping behavior that makes anxiety disorders so crippling.

When our girl was dog phobic, we used to cross the street whenever someone was walking a dog. After a while, we didn't even like going out. Lots and lots of people walk dogs in New York City – in fact, they're nearly impossible to avoid. But thanks to interventions that reduced her anxiety, now we have a happier problem: looking for a dog tiny enough for our apartment or an apartment big enough for our a growing girl and a dog.

•   •   •

Check back in the next few days for reporting on the Clinical Panel which featured a surprise guest, Dr. Martha R. Herbert, who has a new book out on autism and its treatments called Autism Revolution: Whole Body Strategies for Making Life All That It Can Be. Other key presenters were:  Dr. Catherine Lord, who recently took on the job of directing the newly-founded (but not yet up and running) Center for Autism and the Developing Brain, a project of the Weill Cornell Medical College and New York Presbyterian Hospital. Dr. Lord's talk offered insights into the upcoming revisions of the DSM that will dramatically alter the checklists for an ASD diagnosis. Dr. Michael Siller shared research on the importance of maternal (or parental) insightfulness in the effectiveness of play therapy; Dr. John Brown reported on training kids to imitate their peers in naturalistic settings, and Dr. Linda Meyer spoke about meeting the needs of adults on the spectrum and the people who care for them.

•   •   •

You can also follow the Weill Cornell Autism Research Group on Facebook. In a month or so they'll be releasing videotapes of the talks so you can listen for yourself, and see what has the most resonance for you and your family.

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.

What Helps

The sweet girl on CCTV at the speech-language clinic.

Lately the sweet girl has been getting the most phenomenal speech therapy through a clinic at a local college. The key to the therapy is that the speech language pathologist who is supervising the student clinician is brilliant, with years of experience dealing with kids who have troubles with language pragmatics, aka social skills or conversational skills.

Sweet M's recent burst of conversational fluency tracks directly to the beginning of this intervention, which started in late January with the beginning of the Winter/Spring semester. I have loved the couple of occasions when I've watch the therapy sessions on CCTV — to see what they do and copy it at home.

This got me thinking about all the things that have worked, or have at least helped, in our adventures at Autism's Edges. This is a partial list . . .

• reading intervention with learning specialist
• excellent psycho-pharmacology
• the support of friends and family
• field trips
  
• reading narratives (books and blogs) from other parents and from adults on the spectrum
• excellent behavioral one-on-one at school for two years
• an equine therapy summer camp
  
• making art, always
• time
  

So much help over so much time. Our gratitude to all the helpful souls.