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.

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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.

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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.