To the Woman Who Rolled Her Eyes When My Daughter Asked a Tour Guide If She Would Speak More Slowly

To the Woman Who Rolled Her Eyes When My Daughter Asked a Tour Guide If She Would Speak More Slowly:

You know who you are. You're the one on the college tour with your handsome son and tall husband. You're the one with the perfect salon-blonde hair, the Louis Vuitton shoulder tote, and the 1.5 carat heart-shaped diamond earrings. I saw you. I took you in. I thought about you for so much longer than you ever thought about my girl. I carried you along with us. I could not leave you behind on the tour, though my girl seemed to not even notice you.

It happened in a micro-second – your disdain and dismissal of my girl.

All of us were on a college tour (yes, dear readers, we are going on college tours – more on that soon!)

We were in the long echoey hallway of a major university in our city and the student tour guide was showing us the university's library from the corridor just outside – not from the quiet zone just behind the glass doors. A custodial worker began pushing a noisy cart through the hallway – it echoed and rattled off the long tile and cinderblock walls of the hall.

As the tour guide described the two million volumes available to students, my girl said, "Excuse me, could you speak a little slower, I'm having trouble hearing." This was a polite request for an accommodation. She spoke softly, clearly, with good tone and no urgency (however urgent it may have felt to her). Trust me, we've worked on this.

And that's when it happened. You rolled your eyes and then you looked around to find someone with whom to share this moment of superiority and dismissal. But no one returned your look. It's possible no one even saw you except me. My girl didn't seem to see you, for which I'm grateful.

The student tour guide graciously adjusted her pace and we continued on the college tour.

But from that moment forward, I could not stop thinking of you. Honestly, I was furious with you. Who could you be? Who are you that you would dismiss my girl's calm and polite self-advocacy?

I tried (and failed) to be generous: Could you be terrified about the road ahead for the handsome young man you have raised? Could you be often considered stupid and slow yourself, as pretty blonde women generally are? Could you be scared and alone behind the branded bag and bobbles, next to the perfect-looking son and husband?

I couldn't take your side. No, I wanted to take you aside and ask you how you could do that? How could you roll your eyes at my girl's request for a little slower speech?

I wanted to tell you a thing or two about my girl. I wanted to tell you how she has worked harder than you have likely ever worked on anything just to learn to talk. I wanted to tell you that she was told that she'd never learn to read and is now passing her high school exams and looking at colleges. I wanted to tell her how she hard it is for her to process language, especially in noisy rooms or corridors like this one. I wanted to tell you that your contempt makes the world a smaller place for my girl, but for you as well, for you most of all.

But I didn't. I didn't take you aside because, well, I didn't want to upset my girl. She didn't seem to notice you and I didn't want her to. She's the point, you aren't.

But still, you were there, and you changed my day. You made me wince at the realization of how much farther we have to go. I thank you for that realization. I won't soon forget you in the heart-shaped diamond earrings. I hope that some day you'll have a heart that's made of something other than stones.

Yours in college searching,

m.

The Unfriendly Skies, Or Post-Traumatic Airlines Syndrome

Reading the comments on the New York Times online in response to the distressing story of United Airlines re-routing a plane to remove a family traveling with an autistic teen from a domestic flight has left me with post-traumatic airlines syndrome.

We've had our share of airline and airport meltdowns, and the comments on this Times article have left me with flashbacks of the judgmental comments and snide asides of people who seemed to only have experience in drive-by parenting.

My comment on the New York Times site isn't yet posted (they moderate their comments), but here's what I wrote (with links added to the fuller details on this blog):

As the parent of a 17-year-old on the autism spectrum, many of these comments break my heart. Our girl also has challenging food requirements; we have to carry food with us on almost all flights. We need to keep the food from spoiling, so we have tried to use ice packs. Try getting ice packs through a TSA check point. Have a go at that. 

One airline – which had promised us (a family of 3) seats together – decided, on the morning of the flight, that we could all sit separately. This took 45 tense minutes prior to the flight to almost solve. And this was after we had already arrived 3 hours early (at 4am) to ensure we'd get disability seating. We were all already exhausted before we even boarded.

We do as much as possible to plan ahead. Sometimes it's just not possible. 

But it is distressing to read all these comments second-guessing the mom:

• Keep a hot meal ready at hand? Sure thing. 

• Always speak with total courtesy to dismissive flight attendants. Check. 

• Walk 1,000 miles rather than take a commercial flight. Got it. 

• Pony up for first class at $1000+ per seat. Whatever you say. Will do that right after our health insurance reimburses us for the therapy we have to fight about every month or agrees to cover the medication our daughter needs for her gastrointestinal issues. 

• Call the airline ahead. Sometimes works, sometimes doesn't.

Stay home and lock your kid in a closet seems to be what you're recommending. That was fashionable in the 19th and early 20th centuries. Sorry, I'm just not down with that solution. 

Thankfully things have changed a little. But obviously not enough.

•  •  • 

Do I sound angry and snarky? I think I might. I'm sorry. Sometimes I am angry and snarky. Sometimes I'm not diplomatic. Sometimes I'm tired. Sometimes I wonder what happened to human kindness. Sometimes I find myself humming a Grateful Dead tune: "Oh, oh what I waaaannnt to know is are you kind?" Seems an increasingly rare quality.

Be kind. Do better. Walk a mile. All that.

Hello Kitty Magic

We were looking for something special to do in LA that would give our girl a break from the challenges of Dementiaville (aka helping take care of grandma).

Of course our girl Sweet M would always go for Disneyland. But the Magic Kingdom with holiday crowds and a new and not-so-great disability access program didn't sound too magical to me.

Where would we find our magic? Turns out it was at the Japanese American National Museum in Little Tokyo where the current show is Hello! Exploring the Supercute World of Hello Kitty. Our girl was watching the evening news one night and heard about the exhibition, told me about it, and we got organized to go. I'm so glad we did.

Gown for Lady Gaga made from
Hello Kitty plush toys.

Sweet M was enchanted — she was in what I can only call an aesthetic rapture. Part way through the exhibition she was just exploding with joy: "It's just *so* beautiful!" she exclaimed. If an anesthetic is supposed to make you feel nothing, an aesthetic should make you feel something. And feeling she was: just thrilled at the scope and scale of the Hello! exhibition — at the massive, fantastic kawaii cuteness of it all.

As we turned the corner into the second to last room of the exhibition, slipping passed the gown for Lady Gaga made of Hello Kitty plush toys, I came upon signage that read:

SOCIAL COMMUNICATION 

One of Mr. Tsuji's* passions has always been products that foster "social communication." Thus the "hello" of Hello Kitty carries the meaning of reaching out in friendship. Sanrio's early goods focused on the means of communication— such as stationery, pens, and erasers — each with the cheery visage of Hello Kitty. . . . 

And then, on the very next wall:

For some Western critics, Hello Kitty's mouthlessness symbolized powerlessness.
But Japanese people understand things differently. They assume Hello Kitty's design to be an abstraction. A typical Japanese comment: "Hello Kitty has no mouth? I never noticed."

I had never noticed either, so it's not just a Japanese thing. No mouth! And social communication as the emphasis of the earliest product lines . . .  How perfect is it that the Kitty is one of the characters my communication-challenged girl loves most?

And the fact that there was a dress worn by Lady Gaga in the show made this outing even cool enough for her to talk about today, the first day back to school. As you may know from earlier posts here, finding a way to love what she loves and still be cool isn't the easiest thing for this seventeen-year-old Kitty fan. But Hello Kitty works some magic, making her developmentally atypical tastes a moment of cool.

Thank you Kitty-creator Mr. Shintaro Tsuji and exhibition curators Christine Yano and Jamie Rivadeneira! You've made one autie-Kitty-lover and her mom ever so happy.

* Mr. Tsuji is Hello Kitty's creator and the CEO of Sanrio that markets the Kitty's product line.

Growing Up with Autism: Life Transitions, Part 3

Note: This is the third of three posts reporting on the Weill Cornell Autism Research Project (WCARP) Autism Symposium 2012 held at Weill Cornel Medical College in New York City on Friday, May 11, 2012. Usually I aim to report on events within a week or so, but May and June have been crazy busy with graduations at the college where I teach, summer session intensive classes, and our girl's upcoming graduation from middle school that this post has been postpone and postponed!  More on the girl's upcoming graduation soon, but today, the WCARP wrap up!

•    •    •

Although anxiety was the leitmotif of the Autism Symposium 2012, there were moments of hope on the horizon as well.

In the world of autism, hope comes in at least two very different flavors.  The first is the hope for cures or interventions to mitigate the aspects of autism that can create profound limitations on an individual's quality of life. And the second is the hope for a world that can embrace, support and honor autistic individuals regardless of their degree of capacity.

Of course the two are not mutually exclusive: one can hope for interventions to improve a family member's quality of life and work for a world where an autism spectrum disorder does not limit a person's opportunities for a full, rich, and rewarding quality of life.  

Dr. Martha Herbert's
new book on
autism interventions

One speaker at the Autism Symposium 2012 who wove these two threads of the autism discourse together was Martha R. Herbert, a professor of neurology at Harvard University whose new book The Autism Revolution: Whole Body Strategies for Making Life All It Can Be offers parents of children on the spectrum some of the latest science on autism interventions.  Herbert observes that studies of identical twins, one with autism and the other without, make clear that autism is a condition of both genetics and environment.  That is, autism is an epigenetic condition.  

Dr. Herbert's presentation underscored that autistics are not "broken for life," and, that in fact, there are numerous cases of individuals who lose their diagnoses (and not simply because the diagnostic criteria are in flux).  One of the most interesting aspects of Herbert's presentation was her reporting on the research of Ananth Narayanan and his colleagues, whose pilot study using propranolol (an old-fashioned blood pressure medication) suggests that this beta-blocker can increase neural connectivity in the brains of autistic individuals.  

Propanolol has also recently been used in the treatment of post-traumatic stress disorder with considerable success. This, of course, made me reflect on the huge language-acquistion gains that our girl made when her anxiety was first treated with Paxil. Perhaps reducing the anxiety that comes with autism helps increase the signal to noise ratio in the brain, and therefore alleviates other life-impairing aspects of autism. The less anxiety is being transmitted over the neural networks of the brain, the more opportunity there is for other meaningful connections being made.

Along with reporting on these research developments, Herbert also underscored that autistic individuals are often mis-assessed in terms of their intelligence. Citing the work of Michelle Dawson and her colleagues, Herbert noted that cognitive impairment in persons on the spectrum is over-reported because intelligence tests that rely almost exclusively on language processing (such as the Weschler IQ test) are typically administered. A more appropriate test for assessing intelligence in autistic persons is the Raven’s Progressive Matrices. So not only are autistics not "broken for life," perhaps they are not broken at all.  Rather, many are simply be working with a very different perceptual system that heightens anxiety and affects other neurological processes.

Whether or not one imagines one child or one's self as in need of repair, interventions, healing, or cures, nearly everyone agrees that there is much more to be done in the work of creating contexts and communities where persons on the spectrum can realize their full potential and live rich and rewarding lives.  The afternoon sessions of the Autism Symposium took up these questions, but regrettably ran concurrently, so participants had to choose a session based on the age group that held the most interest for them.  I wanted to go to the 18 and above group (where our girl will be headed and for which Michael John Carley of GRASP was a speaker), but opted for 14-18 year old group that we're currently navigating and where speakers presented on resources for parents and kids on the spectrum.
breakout

Dr. Carole Gothelf of AHRC on aspirations for
persons with developmental differences 

Ronni Miller, who chairs the WCARP Parents Committee reported on inclusive programs to assist with social skills (check back at the WCARP site for slides of her presentation and the enormous list of resources she shared);  Dr. Carole Gothelf discussed planning for life after high school, and Catherine Jones and Valencia Small discussed issues of adolescence and sex education for teens on the spectrum.  As this was a small group, there was also time for parents and professionals to discuss confounding problems.

An issue that emerged from the discussion is that fact (a shocking one to me) is that there are no – zero, none, not a one – inpatient psychiatric facilities for adolescents in the city of New York.  One parent reported the crisis of navigating a medication change in her adolescent son and finding him committed to an adult psychiatric ward after she called 911 for assistance. Another breakout group participant mentioned the widely reported tragedy of a boy in late adolescence (a 19-year-old college student) whose epilepsy medication had been increasing his aggression and who wound up pummeling his mother to death. These stories underscored the on-going need to insist on better services to keep our kids, ourselves, and the many people who care for them, safe and well.

Ensuring that our kids on the spectrum have access to all aspects of a full life – work, friends, health, safety, and homes of their choice – is the underlying goal that remains constant amidst transitions across a lifetime. Programs like the WCARP Autism Symposium, focused this year on lifte transitions, help to support and facilitate this constant and ongoing work.

Growing Up with Autism: Life Transitions, Part 2

Note: This is the second of three posts reporting on the Weill Cornell Autism Research Project (WCARP) Autism Symposium 2012 held at Weill Cornel Medical College in New York City on Friday, May 11, 2012.

•   •   •

Anxiety animates autism spectrum disorders, both for autistic persons, and for their familes. For parents of kids on the spectrum a great deal of anxiety revolves around a single question: Who will take care of my beloved autistic child (or children) after I'm gone?  

Dr. Linda Meyer, the Executive Director of Autism New Jersey, raised this wakes-you-up-in-the-middle-of-the-night question when she presented during the second panel of the Weill Cornell Autism Research Project (WCARP) Autism Symposium earlier this month.

Meyer: Facing the unpredictability of the ASD
developmental trajectory.

Answers to this question are often complicated by the unpredictable developmental trajectories of kids on spectrum.  Meyer cited research that notes that about 47% of children who presented with autism resolved into some sort of passing version of normalcy, while the others, more than half, showed little or no improvement.

At the heart of the problem for the parents of autistic individuals is a model (some would say "fantasy") of individuality that imagines that we are all self-sufficient and will grow up into an adulthood where we'll make it "on our own" and even make it well enough on our own (albeit typically with a partner) to reproduce others who can make it "own their own."

To a great extent the American fantasy of individualism and its companion (paired romantic happiness) haunts those of us with kids who may or may not "make it after all."

"advocacy as anxiety's antidote": Organizations like Autism New Jersey work to mitigate this flawed version of adulthood by advocating for adults on the spectrum, for their families, and for others who care for them.  Meyer cited the work of COSAC (Center for Outreach and Services for the Autism Community) in their 2006 report "Meeting the Needs of Adults with Autism: A Blueprint for the Future"and the more recent National Autism Center's "National Standards Report" as part of the critically-important planning and advocacy work that may help to pave the way to services for enormous cohort of autistic children who will grow into adulthood in the coming years.

Advocacy work of this kind helps me sleep a little better at night, but what if your child (or you, as an adult on the spectrum) are at risk of losing an autism diagnosis as the American Psychiatric Association revamps their Diagnostic and Statistical Manual?  Fears of diagnostic exclusion have animated discussions of the DSM-5 since the New York Times reported on this earlier this year.

Lord: When ASD is seen as an array of symptoms

Dr. Catherine Lord, who serves on the DSM-5 Committee on Neurodevelopmental Disorders (the group that is re-writing the diagnostic criteria for autism), attempted to allay such concerns with a presentation that articulated the goals for the DSM revision.

"anxiety about access": First on Lord's list of goals in the revision was "do not change who is included."  Although one could almost feel a wave of relief spread through the packed auditorium of conference attendees, there was a more troubling item further down in Lord's list: "make sure that the [diagnostic] criteria do describe ASD and don't describe people who do not have ASD."

And there's the pinch: having an ASD diagnosis is, like most psychiatric diagnoses, as much a function of social norms as it is of any objective features or characteristics of an individual. Describing something as a disease or a disorder is a matter of social convention.

Take, for example, homosexuality. For quite some time (specifically in the middle of the 20th century) being sexually attracted to persons of the same sex was considered a mental illness. But in 1974, in response to the gay rights movement, homosexuality was stripped of its status as a disease (though it lingered on in another diagnostic category -- "sexual orientation disturbance" -- all the way through 1987). But today, "curing homosexuality" has gone out of fashion among all but a few fringe practitioners of conversion therapy, and the APA currently considers such therapy unethical.

Conversely, consider the case of Abraham Lincoln, whose dark moods and brooding affect lent him the gravitas to lead the nation through the grief-stricken days of the Civil War. Some people argue that Lincoln would have no chance of being elected today since he would qualify for a diagnosis of major depressive disorder. In our positive-thinking, pursuit-of-happiness contemporary culture, anything beyond the most fleeting sadness has become a pathology. Indeed, other DSM revisions currently under consideration include shortening the length of the normal period of bereavement (over the loss of a life partner!) to as little as two months.

Unlike gay activists, who were delighted to lose the stigma of mental illness, autistic individuals and their families often need to maintain their diagnoses because, at least for the moment, access to support services and medications that alleviate some of the challenges of coping in a neurotypical world depend on such a classification.

In fact, access to services for autistic individuals (for example, insurance coverage) has increased over the past decade because of the work of activists and advocates.  In the days when my girl was receiving her first diagnoses, a PDD-NOS diagnosis would have hindered her access to pharmacological therapies, hence her psychiatrist's care to provide an array of diagnoses that would facilitate treatment that I mentioned in the first part of this series.

Lord and the DSM-5 team recognize that
care needs to be taken to not exclude people
from access to services

Diagnoses shift across time as social norms change. And those social norms are shaped, in large measure, by the institutional decisions of powerful, if well-intentioned, groups of professionals.

I don't envy Dr. Lord and the DSM-5 committee the task of revising the volume's developmental disorders section. It's a sobering prospect to imagine that your decisions could cut or eliminate vital services for thousands of individuals who are currently diagnosed with autism. But short of grandfathering in everyone who currently has a ASD diagnosis (which would expose the vagaries of the construction of these categories), it is hard to imagine how enough care can be taken that no one loses their diagnosis.

Lord's presentation made clear that the committee working on the revisions of the DSM-5 has heard the concerns of the autism community. How, or to what extent, they can respond to these concerns remains to be seen, but her arguments for revisions to the diagnosis were elegant and eloquent:

• currently autism diagnoses vary depending on the place where the individual is evaluated, which should not happen with functioning framework. 

• changes in the presentation of autism since the DSM-IV was devised have been so dramatic that the new framework must account for many more referrals of: 1) toddlers and two-year-olds (due to better early identification), 2) older and younger children without intellectual disabilities, and 3) adolescents and adults with other psychiatric co-morbidities. 

• increased early intervention and the accompanying positive results make autism a far more mutable condition than it has previously been, and finally, 

• there has been (and needs to be) greater attention to the special issues of girls and women on the spectrum. 

These changes, Lord argued, make the process of accurate diagnosis more complicated, and more important, than ever. The diagnostic framework for autism, she asserted, ought to be robust enough to be useful for all ages, all development levels, any gender, and "all degrees of severity where there is impairment."

Lord: Deficits and capacities inside the spectrum

All of this makes sense, though there are lingering concerns.  For example, what if requiring repetitive behavior as one of the two primary symptoms of autism (a proposal being considered by the DSM-5 team) eliminated a whole swath of people from the ASD classification? They might well be pushed off into a newly minted diagnosis, Social Communication Disorder. Thus just as advocates for folks on the spectrum have achieved the hard-won fight for insurance coverage, some may be rolled off into this new diagnostic category for which no coverage is mandated.

Recognizing how very much is at stake in the entire enterprise of revamping the DSM may be a first step toward advocating for accommodations and services that are not based on a deficit model that requires psychiatric categories for access to assistance. Instead, in a more just and equitable world, support and assistance would be based on the shared social goal of developing the greatest capacity for each and everyone of us, on the spectrum or not.

I know it has an utopian ring to it, but in that world the parents of kids on the autism spectrum could sleep more soundly each and every night.

•   •   •

This is the second of three posts reporting on the WCARP Autism Symposium 2012.  Check back in the next day or two for more on the clinical panel and a report on the breakout group that looked at services for adolescents.  

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.

An American (School) Girl: The Autism Edition

One of the worst things about eighth grade for our girl is the ringing of the bells between periods. Every time the alarm sounds, it jangles her keenly sensitive auditory neural pathways, and sets off a cascade of neurotransmitters to generate a flood of adrenaline. Instead of shrugging and heading from class to class, she races through the hallways as though pursued by a saber tooth tiger or a pack of wolves (not to mention the threat of detention for tardiness). When she hears a bell she'll plough right through any obstacle — inanimate or animate — to ensure that she's on time to her next class.

The excruciating (for our girl) sound of the school bell is, according to educator Cathy N. Davidson, one of the many remnants of an educational infrastructure designed to create the compliant and synchronized industrial workforce needed to populate the factories and offices of 20th century America. The bells, the desks in rows, the proscenium stage set of chalkboard with teachers at lecterns, the out-of-date textbooks, the separate vocational and college tracks, and the standardized multiple choice tests (the results of which can shape the course of a life) are the educational dead weight of the industrial age that could keep our country from realizing the genius needed to succeed in the current century and the future it holds.

Twice in the past month I've had the pleasure of hearing Davidson talk about her new book, Now You See It: How the Science of Attention Will Transform the Way We Live, Work and Learn, which takes up these and other problems (and possibilities) created by the disjunction between our neurobiology and the structures of our schools and workplaces. Along the way, Davidson's research on neuroscience has led her to consider the anomalies found among kids like ours.

In a particularly evocative section of Now You See It, Davidson writes about the fate of children with Williams Syndrome across cultural contexts. In the United States, where happiness and effusiveness are considered virtues, the ebullient and embracing nature of Williams Syndrome kids make them more lovable and socially acceptable.  However in the context of Japan, where a reserved demeanor is valued, Williams Syndrome children are more likely to be institutionalized — possibly because of their (perceived) rude and intrusive behavior.

Reading this passage had me thinking about the social deficits that our girl has. She's on the other end of the emotional continuum from the Williams Syndrome kids. Our sweet girl is by no means warm and cuddly. She rarely engages in the back and forth of tween girlhood. She's not what anyone who'd just met her would call friendly or welcoming. Smiling is just not a default facial expression for her. In short, she lacks those social skills that are so highly rewarded in the "how to win friends and influence people" American context. Her reserved nature would be a problem for any kid, but it's especially a problem for a girl. While good cheer and an affable nature are valued in middle class American boys and men, they are all but required among the girls and women of this group.

Our girl's social reticence is a very real phenomenon, but it is the social requirement of female friendliness that transforms her particular affect from a simple fact to a significant handicap. 

As our girl shoves her way through the hallway to get to class on time she is not just frantic and rude, she's also unladylike, ungracious, and simply less lovable. She's violating the social norms of her nation, as well as for her gender and her class. I am painfully aware of how she seems to others -- remote, rude, awkward, pushy.

Sometimes I wonder if things would be better for our girl in Tokyo, home of the Pokémon and Yu-Gi-Oh she loves. There she would be strange, but her strangeness would be chalked up to being a foreigner, to being gaijin as I once was. Sometimes she even asks when we can go to Tokyo, or what it was like when I lived there. I'd like to tell her that it was strange and wonderful — a lot like she is. But instead I tell her about coffee shops that serve pasta topped with mashed potatoes and gravy or sushi bars that make sashimi so fresh it's still quivering on your plate. Our girl recoils in horror at the thought of either, and in that moment I know that however much of a neurological foreigner she may be, in so many other ways she's still an American girl.

Now there is only the small task of making over an America in which she can thrive, and, in the meantime, an eighth grade class where she can more than survive. 

Autism and Airlines: How Can Airlines Make Travel Easier?

Now that we're done getting ready for the impending arrival of Hurricane Irene, I'm catching up some blogging that didn't happen this week. We had to lay in some provisions – bottled water, some food, flash lights, sheet plastic and gaffer's tape. And we had to move our garden off the fire escape.  And we had to recharge everything that has batteries. And now I guess we're about as set as we can be and I can get back to things that were meant to happen Thursday, including blogging about the rest of our experience with Virgin America.

You might have read about our awful experience with Virgin America last week.  Once we were back in New York their customer service department contacted us, expressed their apologies, and credited us for the cost of our flight.

But they did something even more important than that.

They asked us how their airline could make traveling for people on the spectrum and their families easier.

I said that I had my own ideas, but that the spectrum is broad and that we should hear from adults on the spectrum as well as parents.  So I said I would post their question to the autism and nuerodiversity community.

What would you like airlines to do to make your travel with them easier?

Please post your comments and @virginamerica will use your suggestions in upcoming employee training.  Thanks, everyone.

Inclusion: The Wedding Edition

Not long ago our girl was a junior bridesmaid at my brother's wedding. Originally she was meant to be a flower girl, but she's just been growing too fast to fit the flower girl role. In the weeks leading up to the big day, there were many adjustments and alterations, not only to our plans, but also to the glorious and very grown-up (strapless!) bridesmaid's dress that his fiancé had chosen for Sweet M to wear.

My brother and his fiancé went out of their way to include our girl in the bridal party and we were very touched by their consideration. And so, together, we navigated the complicated terrain of our girl's sensory issues (no scratchy fabrics, dress can't be too tight), her language impairments, and her potential for some sort of emotional dysregulation. I think at some points they may have thought we were probably just coddling her. Sometimes it's just hard to remember that for all of her progress, our girl remains very much on spectrum. It's just hard to understand that someone can look so, well, normal, and yet be so very, very different.

When the big day arrived we were in California, driving to the Wayfarer's Chapel where the wedding service would be held. Our girl had been coiffed and coached: the job of the bridesmaid is to walk slowly up the aisle, the job of the bridesmaid is to hold flowers in front of her waist, the job of a bridesmaid is to smile a lot of the time, and look happy and serene. The job of the bridesmaid is to remain calm even if the pantyhose are a little tight and the weather is a little chilly for a strapless gown. Sweet M did it all, with grace and aplomb, and we couldn't have been more proud of her.

After the ceremony there was a sizeable reception party. My own family of origin is not an especially celebratory crew. A mix of Irish stoicism and Pennsylvania Dutch austerity, we're not given to big ceremonies or lavish celebrations. I can't remember the last time I've been to a big wedding party.

Fortunately for us, and perhaps for my brother most of all, he's married into an enormous, joyous Filipino family who know how to have a good time. I'm not usually one for ethnic characterizations, but cultural differences exist, and this one definitely works for us. His new in-laws' joie de vivre is contagious. There was a beautiful ceremony followed by a reception with dancing, and speeches, and all of the usual wedding party antics.

And that is, of course, where things got just a little complicated for our girl. We'd scripted and coached every aspect of the bridesmaid's job that we could think of, but we'd forgotten to explain the rules of the bouquet toss.

So picture the scene: it's been along day. We'd started at 9am with a salon visit to get our girl and her grandmother coiffed for their roles. Then we'd driven quite some distance to move into the hotel near the wedding venue, where we dressed for the wedding. Our girl had done well with the various unfamiliar items of clothing -- the pantyhose, the strapless bra, the dress tape and safety pins to ensure that dress stayed put throughout the afternoon and evening. Then we drove to the wedding, where Sweet M did a brilliant rendition of bridesmaid's behavior. Then onto to the reception with cocktails and a long dinner with lots of new foods, new aromas, new people, surrounded by loud disco and techno-pop music, people dancing, and joking, and having a wonderful time.

Our girl was handling it all well. Then, towards the end of the evening, the master of ceremonies called all the single women out to dance floor for the big moment of the bouquet toss. The dance floor filled with the hopeful gals, our girl among them. The lovely bride turned away from the hopefuls to toss the bouquet over her shoulder. Our girl was, with all the other single gals, arms up, waving, hoping to catch the prized flowers. The bride did one teasing decoy toss that threw them all off-guard, and then tossed the flowers high into the air.

From the edge of the dance floor I was calculating the arc of the falling object in my mind's eye. I was hopeful as it looked as though it was going to land, remarkably, right in our girl's outstretched hands. The fact that I hadn't coached her on this part of the festivities, with its social demand of being a good sport, wasn't going to matter. It looked as though it was going to be okay.

But then, in a fraction of a second, it wasn't. A tall beautiful woman next to Sweet M caught the bouquet.

What happened next is a bit of a blur in my mind. It happened fast. Our girl lunged for the bouquet and grabbed it from the hands of the lucky winner, wrestling it away from her. In the process her beautiful strapless gown slipped down over her little strapless bra, the shimmering aqua décolleté settling somewhere near her waist.

In the throws of a social catastrophe in the making, you make choices in nanoseconds. Priority one: get the dress back up over the bra. Priority two: deal with the inappropriate social behavior as quietly and as well as you possibly can. Priority three: Minimize embarrassment for the girl (and for ourselves -- "Who are that girl's parents?"), and ease any unhappiness amongst others that the gaffe may have caused.

By the time I'd gotten over to the girl and pulled the dress back into place, the single gals had dispersed and I couldn't find the real winner of the bouquet. In my dismay at the turn of events, I couldn't actually even remember who had caught the roses.

Once back at our table, I talked quietly with our girl about the bouquet toss. She was so pleased and proud to have the white rose buds with the rhinestone studs pinned into their centers.

"Hey sweet girl, you didn't exactly catch the bouquet, did you?"

"Well, not exactly," she paused to consider her words. "Technically I fought for it."

"Yes, that is what you did. If you play this game again in the future, you can't fight for it, you have to just let whoever catches it keep it."

"Okay, I get it. But I wanted to get the diamonds."

"Yes, the diamonds in the flowers are beautiful, but you still can't tackle people to get the bouquet."

"Okay."

With wardrobe malfunction and teaching moment behind us, now we just needed to find the woman who actually caught the bouquet and apologize. But our social reparations were interrupted as the evening's festivities weren't done yet: now it was time for the single men to come up to catch the garter.

The unmarried gents gathered around. The beautiful bride was installed on a chair in the middle of the dance floor, her leg lifted in playful provocation, as the groom engaged in the somewhat ribald ritual of retrieving the garter from under her voluminous gown.

Moments later the groom tossed out a garter. The men scrambled to catch the prize and then our girl, sitting on the sidelines, bolted up and joined the men in the scramble. My heart dropped. Now what should I do: haul her off the dance floor screaming, or let her wrest the garter out of some fellow's hand?

Then, in a moment of pure grace, my brother tossed out another garter. And another. And another. The scrambling continued, as he tossed out garter after garter. There were garters a-plenty for the guys and for our odd-ball girl, who emerged from the fray with a black and white satin treasure with a small white bow.

"Hey, look what I got!" she exclaimed.

"Yes, you got a garter."

"What's a garter?" she asked.

"Women used to use them to keep up their stockings."

"Oh."

"You know, sweet girl, when you're at a wedding again, remember that the garter catching is something that the guys do. It's just for the guys. The bouquet is for the girls and the garter is for the guys. Weddings are about making it really clear that guys are guys and girls are girls."*

"Okay," she replied, brightly.

"By the way, dear girl, why was it so important for you to get a garter?"

"Well, I never heard of a garter before -- I just had to see what it was."

And that's our girl: on her own personal quest for gems and knowledge. And she got them a-plenty, thanks to grace and goodwill. We're so grateful to have enjoyed this occasion with our girl held close in everyone's hearts. This is inclusion: the wedding edition.

• • •

*Note to my more politically engaged readers: A more nuanced analysis of weddings and gender will have to wait for another day. Here we're just trying to get to an understanding of gendered norms. Later we can deconstruct them with our girl.

Autism and PTSD: Reflections on What May Be the Most Important Autism Parenting Post You Ever Read

MOM-NOS has written a must-read post about Post-Traumatic Stress Disorder and Autism Spectrum Disorders at Hopeful Parents. The takeaway from MOM-NOS's post -- one that is indescribably important -- is that it does get better.

I know that might be hard to believe. I know that for families in the first months following a diagnosis, or in the throws of battles with the schools and school boards, or with family members who think it's just a case of poor parenting, that it will be hard to believe that it gets better. But it does. I am living proof of that . . . the low volume of posts here at Autism's Edges in recent years is silent testimony not only to how much easier our lives are these days, but also to how much easier I am with our girl's challenges.

Back in the days when I before I started this blog we were living a life of constant hysteria -- we did not know when the next explosive moment would be. We did not know when the phone rang if the sound in the background would be our girl screaming as though she was being tormented by demons because there had been some minor (minor for typically developing folks) disruption in her routine. We did not know if we'd be able to make it through a grocery store visit, or a walk to the corner, or a trip to the swings at the playground without an episode. We did not know if our girl would ever learn to talk or to read. We did not know how we would pay for therapies and interventions and lawyers. We did not know how we would crawl out of the years of sleep deprivation. We did not know how we would get from point A to point B without a crisis. If you've read this far, you probably know what I'm talking about.

Every single day was like a personal battlefield with obsessiveness, explosiveness, and rigidity -- not just that born of our daughter's neurological difference, but that of educators, doctors, therapists, and family members. We were embattled and angry and weary.

At one point, I gave up. It was October 2002.

We were still reeling from the impact of the 9/11 attacks on our lives and livelihoods. We live not far from the site of the former World Trade Center and all of us, including our then three-year-old girl, had seen things that no one should ever see.

But on the other hand, it was more than a year after 9/11 and nearly two years after our girl's first of many diagnoses. And things were not getting better. Not even a little better. There were therapies (OT and speech and a para) and there were constant trips to specialists, and things were not getting better.

I was sinking. Not fast, but steadily. Sinking, sinking, sinking.

Most people think of me as pretty sturdy. I look sturdy. I act sturdy. Resilient is a word people use to describe me. So no one really knew that I was sinking. Even the people I told that I was sinking didn't think that I could sink as low as I was going.

To say that I wished to end my life would be to understate what was feeling. I wanted to end my life and end the world. In those days, when I watched apocalyptic films like Armageddon or Independence Day or War of the Worlds, I was rooting for the other side. The space aliens and the errant asteroid were just getting the job done. Three cheers for the space invaders. Bring on the asteroids. I understood, in a visceral way, why the fantasy of global annihilation has such popular appeal.

One Saturday afternoon I just gave up.

I am not particularly proud of this moment -- who would be? But it did happen. And for reasons that remain mysterious to me, the enemy did not accept my white flag. I went on. The world went on. I crawled off the floor of my bedroom and vomited and went on.

And we got help. Real help. Helpful help. A pediatric psychiatrist that we adore. One of those doctors you would go to the end of the earth for, as Jess of Diary of a Mom aptly puts it.

Slowly, and sometimes quickly, things changed. Our girl's anxiety was finally treated. Within days we were able to stop walking around our apartment as though there were land mines under the rug or the sink or the stack of books about autism at the bedside. She smiled and laughed again. My depression was treated and I started to see some light coming in through the cracks in our craggy lives.

Psycho-pharmacology saved our lives. Speech therapy, and talk therapy, and EMDR, and all the other therapies helped, but without the medication, we would have died. This is not an exaggeration, it is just a fact.

The medications were not perfect -- we had problems with dosing, and problems with the Paxil suspension, and ultimately the anxiety came back and we had problems until we got her on another medication. And the medications didn't and don't solve everything. Her speech and language improved exponentially, but she still needed speech therapy. She still needed OT. And she still needed a para-professional in the classroom. But they gave us the space to help her, and to dig our way out of the depths of despair that had become everyday life for us.

In the process of getting the help we needed, we lost some people in our lives. In a particularly painful moment, one close friend suggested that we had failed as parents and were drugging our girl into compliance. We love this person, but we couldn't listen to this. We could see with our own eyes that our girl was feeling better, learning, growing, and developing in ways that would have been impossible when she was in the thrall of obsessions.

You may lose some people along the way, no matter what you do. Please don't make the mistake I made and risk losing it all. There are lots of people out here and there is help out here. Lots and lots of help. If you are feeling anywhere nearly as badly as I was feeling in 2002, get help.

You'll be glad you did. Let the space aliens lose this round.

Illustration: from the National Institute of Mental Health web page on PTSD.

Pervasive Hopeless Syndrome-Not Otherwise Specified

On Saturday I heard Temple Grandin speak at the New York Chapter of the National Autism Association conference. Grandin is an impressive speaker. She stood at a podium in a packed school gymnasium for more than two hours offering advice and inspiration to parents and grandparents and teachers who were looking for answers. She was wearing her trademark Western shirt, one with elaborate embroidery across the yoke, and kept the audience mesmerized with stories of cattle and ranchers, autism and learning, brain anomalies and neurological plasticity. She attributed her own formidable public speaking skills to years of experience and practice, not to some innate talent or gift.

I'd gone to Grandin's talk less for answers than for a strong dose of hope. Two shots of hope, straight up, with a chaser of muted ambition.

Last week we had the sweet girl's parent-teacher conference. I had been looking forward to the parent-teacher conference. After all, I'd seen the head teacher the week before and she had been raving about how wonderfully Sweet M has been doing -- how she's enjoying the reading for English class (a book about two boys with disabilities who team up to support each other) and about what an amazing time she'd had on the overnight field trip.

But as soon as we walked into the classroom, I could feel something wasn't right. If we were about to get a terminal diagnosis with a one-month life expectancy the affect in the room would not have been more grave.

The homeroom teacher started off by saying that Sweet M is so organized, hardworking, and focused on succeeding with her studies. That she is so eager to please -- such a great student. That in reading that she has great decoding and fluency skills -- better than some of her classmates. And that she is so far ahead in terms of her organizational skills that she's able to get herself packed up at the end of the day and get started on her homework while she is still at school.

The way that this information was conveyed -- rote and joyless without any details -- I could feel myself waiting for the "but"-- for the sucker punch. It came quickly.

The trouble is, said the head teacher, that when she's doing her homework she asks them for homework help.

And that's a problem because?

Because it's a busy, hectic time since we have to help the other kids get their backpacks ready and make sure they have their homework.

That's understandable. So is the problem how she's asking? Is she inappropriate . . . insistent and demanding?

No, when we tell her that she has to wait she is okay with that, but she is anxious.

So what does the anxiety look like?

Well, she jiggles her leg and her body gets tense.

Yes, we see her jiggle her leg when she's concentrating at home. Is there a problem with her jiggling her leg?

Well, she's anxious. And we'd like her to be more independent with her homework.

This is the part where, if I were in a cartoon, the air bubble over my head would read "WTF?" Let me get this straight: she is organized, ready to go, working on her homework, asking you questions, compliant when you are unavailable, and that is a problem? The other kids can't get their backpacks organized to go home, but you need Sweet M to be more independent? WTF?

So what was it they were saying? She's too much work? We can't figure out what to do? She makes us feel like we're failing?

We like to team build with the school. We like to coordinate our efforts, so we don't always say what we are thinking. But really, WTF?

At the end of the conference, the assistant teacher who had sat throughout with arms folded across her chest and smirked her way through the conference said to the head teacher, "Phew, only two more [parent conferences] to go." While we were in the room. Standing right there. She said this when we were right there.

The next day I spoke with the principal. She told me that the teachers had already told her that the conference had not gone well. Well, they got that right. We can definitely agree about that, which is a place to start.

So what were these educators trying (and failing) to communicate to us with all of this gravitas and hand wringing and the mysterious but incongruent claim that they want our girl to be more "independent"?

The principal said that apparently Sweet M isn't understanding what is going on in class. After five minutes she is, in their words, lost -- completely spaced out. Daydreaming. In another world. She doesn't understand what is going on in the class discussion. And she doesn't look like she's paying attention.

In other words, she has limited auditory and linguistic attention. This is not late-breaking news in the Vox household, so why the gravitas? Why no problem solving? Why no strategies from the reading specialist? Why no ideas for interventions? After years, nearly five years of writing this blog and dealing with these educators, I am so weary of the long faces and hand wringing, and the looks of pity that are sometimes peppered with glances of contempt when one is seen as the parent in denial -- the person pathetically grasping at unrealistic hopes for their child's future.

I have grown incredibly weary of Pervasive Hopelessness Syndrome-Not Otherwise Specified.

Unlike PDD-NOS, very little is known about Pervasive Hopelessness Syndrome, other than that it is highly contagious. Although there is thought to be a genetic basis for PHS-NOS as there is a frequent co-morbidity of depressive disorders, most cases of PHS seem to be brought on environmental factors. For those with a genetic risk, for example, with first degree relatives with a history of depression, exposure to educators who have thrown up their hands can be particularly dangerous. The onset of the condition can be sudden, but there are antidotes available, including:

• inspiration from autism activists like Temple Grandin, Donna Williams, Valerie Paradiz, or Daniel Tammet.

• hanging out, online or in-person, with parents of kids on the spectrum who haven't given up hope. Here the list is awfully long, so I won't list them all. If you've been reading this blog, you know who I've been reading over the years.

• memoirs by the really pioneering parents of kids on the spectrum, like the late Clara Claiborne Park or Grandin's mother, Eustacia Cutler.

• one's own experience -- knowing that with skilled instruction and interventions and loads of patience one's child does grow and change and learn and develop.

But this last antidote can be in short supply. These experiences take time to develop.

It's easy to forget that five years back, back in November 2005 when I started this blog, that the reading specialists at M's school had told us that she was not learning to read, and that they did not expect that she would.

So last weekend, reeling from the debacle of the parent-teacher conference -- I went to see Temple Grandin and got one serious dose of hope. For the moment I am immunized against this most recent contagion of PHS-NOS. Now I have only to figure out how to stop the contagion at her school — how to get this posse of teachers to rally around my girl instead of circling their wagons and leaving her to the elements.

Miles to Go (1.242 Miles, to be Exact)

We are hoping the humidity will break and the weather will cool down because tomorrow morning Sweet M is set to run a 2K.

A 2K.

It's another "who'd have thought it possible" moment over here at Autism's Edges.

First there is the general lack of athleticism of her parents. Both of us were the type of kids who had no interest in competitive sports.

Secondarily, Sweet M has had her share of what I call round years . . . years when her otherwise mesomorphic physique grew round and endomorphic with the side effects of one medication that is known to pack on the pounds.

But things changed when she switched medications last year and since early spring she's been doing a girls' afterschool running and self-esteem program.

Tomorrow's the big day of the 2K. Go M go.

The Greatest Problem in the World

I have the greatest — as in absolutely best — problem in the world.

Sweet M wants a dog.

The same sweet girl who just a few years ago screamed in terror at the sight of any dog now wants a dog of her own.

Do any of you remember the days when we had to cross the street when we came across someone walking a dog? I sure do. But those days seem to be far, far behind us now. And it's not even been five years.

The canine-phobia is gone.

Now, when she sees a dog, first she'll ask the dog owner if it's okay to pet their little guy. She's learned to let the dog sniff her hand, then she gives them a little scratch behind the ears.

Sometimes she goes for the baby talk as she pets the little ones — "Who's a cutey wootey?" I'm supposed to be discouraging the baby talk, but I'm so stunned by her shift, that I just haven't been able to step up on that front.

So I have greatest, absolutely best, problem in the world: how to keep up with her success. How to manage our lives so I can to rise to support her progress.

We are in a tiny apartment. I have allergies. And Fathersvox has sworn that he will never take any dog for a walk under any circumstances.

It's all a bit of a problem. And I'm thrilled to have it.

Does anyone have any teeny-tiny hypo-allergenic dog breeds to recommend?

Blue Angels

For months and months Sweet M has wanted to go to the Intrepid Museum "to see the kind of boat grandpa lived on."

I had demurred, having spent more hours than I care to remember of my own childhood summers at airshows, visiting aircraft carriers, or wandering the halls of air and space museums. I remember in particular the airshows, where the Blue Angels would soar in formation overhead, doing loop to loops and other acrobatic aeronautics.

For some people, like my father, who was a retired naval aviator, these shows were simply thrilling, and he wanted to share his excitement with his family. What I remember from these shows was the noise, the crowds, the heat — it was always on the hottest or second hottest day of the summer. There would be the burning sun, the smell of jet fuel and exhaust, the dropped sno-cones melting on the bleachers, the horrifying roar of the jets overhead. And afterward, there would be the sunburn, red and blistering. Sunscreen was a prescription-only product in those days. On such outings I often wept, or screamed, or quarreled with my siblings, or shutdown and stared at single object in an effort to maintain my equilibrium.

Now, parenting a child on the spectrum, I understand that I had been experiencing sensory dysregulation. It was just all too much for me. But then I just understood summer and these outings as something to be dreaded and endured.

So the idea of visiting the Intrepid, docked on the Hudson River, in the heat of the summer and the Memorial weekend crowds had, as you might anticipate, almost no appeal.

But Sweet M had wanted to do this for so long. She wanted to honor her grandfather's memory by visiting the aircraft carrier and seeing the airplanes. And so we went.

We had sunscreen.
And hats.
And water bottles.
And it was fun.

Neither of us could believe that her grandfather had lived on a boat like this — sweltering in the South Pacific heat. At the Intrepid Museum the bridge of the ship has an air conditioner so that the museum docents don't pass out, but there were no air conditioners in the aircraft carriers of 1940s. And no sunscreen for the sailors or naval aviators. And the noise and heat and commotion of jets taking off and landing was accompanied by the anxiety of the impending war with China (that became, instead, the Korean War.)

I wonder how they did it.

Which makes me wonder how the young women and men serving in Afghanistan and Iraq do what they do. They do have sunscreen, and there are internet connections to family and friends. But as far as I can tell those are they only improvements. There is still the heat. To which one can add the sandstorms. And the constant anxiety of the improvised explosive devices, coupled with the military commands' failure to supply them with adequate equipment like armored jeeps and flack jackets. They work alongside highly paid mercenaries who complicate and undermine their missions. And the mercenary's huge salaries make the the gift of the troop's military service look like a fools' errand. Finally they contend with public support that is muted by the fact that the invasion of Iraq was premised on trumped up intelligence.

I am thinking of them today. And of my father, who served at the close the Second World War, through the Occupation and the Korean crisis, twenty years in all.

And I am thinking of the military families, especially those with kids on the spectrum. How to they get by, faced as they are with the limited resources of military salaries and with single parent families imposed by stop-gap re-deployments?

These are the people I'm remembering today. Memorial Day, 2010.