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.

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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.

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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.  

BlogHer 2011: Unpacking the Special Needs Swag

The swag bags of new product samples that I hauled home from BlogHer 2011 were nothing compared to the real takeaway: the powerful sense that disability rights will be at the heart of any 21st century social justice movement.

Don't get me wrong— I'm thrilled about my new Post-It Note sample products, my 3M damage-free wall hooks, the Ziploc lunchtime plasticware with a special compartment for salad dressing, and especially about the Dr. Scholl's arch supports custom-fitted with their new computerized footmapping kiosk. But all this stuff I'm carrying back to New York is nothing compared to the germ of the idea that disability rights will be the social justice and civil rights movement of this century.

The BlogHer 2011 convention, where nearly 4,000 bloggers gathered to learn more about honing their craft and expanding their readership bandwidth, may seem an unlikely place to launch or relaunch a movement for social justice for person of all abilities, but that may be exactly what happened at last Friday's Special Needs Mini-Conference.

Organized by Julia Roberts, founder of Support for Special Needs, and featuring bloggers Shannon Des Roches Rosa, Robert Rummel-Hudson and Aurelia Cotta, the Special Needs Mini-Conference was nestled in the middle of the BlogHer convention, in the middle of the middle day, at lunchtime.  In short, special needs were at the center of the BlogHer schedule.  It was certainly at the center of my schedule, as I'd not have made the trip to San Diego for the convention were it not for the Mini-Conference.

And the trip was well worth it.  Each of the panelists brought a particular perspective to the conversation, but Robert Rummel-Hudson was most outspoken about the need to launch a reinvigorated disabilities rights movement in the face of the coming battles over budget cuts.  Rummel-Hudson, who blogs at Fighting Monsters with Plastic Swords, called on bloggers to step outside of the special needs ghetto (my word, not his) to reach the millions of people who fancy themselves unaffected by disabilities.

The army of advocates and allies that disabilities activists will need in the coming budget battles will have to include those folks who have not yet faced up to the reality of their own human fragility and vulnerability. It may even need to pull in those people who think of our kids as burdens on the system. Bloggers, Rummel-Hudson argued, can contribute to building a disabilities social justice movement by doing what we're already doing, but doing it better: by telling our stories so well that everyone, special needs parent or not, finds themselves embracing our struggles as worthy of their support.

Gathering these political allies for persons with disabilities ought to be the easiest of tasks. As Rummel-Hudson pointed out, disabilities know no political party. Disabilities impact families as politically disparate as the Kennedys and the Palins. But, on the other hand, as I commented from my seat in the audience, disabilities are frightening for people who aren't around them. There, in the person of the wheel-chair-enabled or the cognitively-different is the specter of dependency, of vulnerability, and of deviation from some ideal of a normal life.

Of course we're all on a continuum of abilities. Somewhere in the back of our minds we know that we're all just one serious illness or one accident or one gene deletion from the ranks of the disabled or differently abled. And if we live long enough to become old, frail, incontinent, and infirm, we'll all get to be disabled eventually. The trouble is, that's a hard sell. Who wants to contemplate the reality that disability is a category we may all inhabit at one point or another, especially as rights and services are so paltry already?

Disability civil rights strategy is ever so slightly different than that of other civil rights movements. Other social justice struggles have relied on alliances built across difference. For example, very few of us move readily between racial categories (though some people argue that we do and should). Similarly, very few people, save M2F transgendered folks, go from benefiting from male privilege to living in a world circumscribed by gendered stereotypes. But civil rights built around disability rights are somewhat different in that we can all enter the realm of the disabled.

That's not to say that we can't be othered, or treated as other by persons who imagine themselves superior and invulnerable. There were groans of recognition from the mini-conference audience as people recounted the looks of stricken pity, and the "I don't know how you do it's" that we all hear from people who imagine that our lives are horrendous and our children are some sort of pathetic freaks worthy of a 19th-century sideshow. Usually such expressions of pity, however ingenuous, come without any concrete offers of support. This tendency to make us the distant and undesireable other limits our allies, advocates, and alliances, even if a good pity party may help raise funds at the charity ball or annual telethon.

Disability activism necessarily fractures the American fantasy of the heroic individual who rises from nothing to the pinnacle of success. In its place we foster the ideal of persons supported by, and supporting, each other. Disability activism requires that we all embrace our own limits, our own vulnerabilities, our own profound potential for incapacity. Like the Buddhist meditation on one's death as the path to the fullest possible life, disability activism requires that we all face up to our own finitude, laugh, and get on with it.

I'll be working on that, and telling our story as well as I can, and thanks to Blogher 2011, enjoying a new community of blogging compatriots and some custom arch support from Dr. Scholl's.

An Octopus's Garden By the Sea

Sea Life Aquarium, Carlsbad, California

This summer we were meant to go to a water park. I'd cut a deal with the dear girl: if she attended a couple of computer animation workshops she could go to a water park. Water parks are her idea of summer heaven. I'm much less enthusiastic, especially after the wrenched toe incident of 2007 and a series of online reviews featuring human waste.

But still, a deal is a deal, and I was bracing myself for a day of sliding down inclines of various sorts in all kinds of questionable water.

Happily for me, we didn't wind up at a water park. Our girl, you know the one — the one who is described as inflexible and rigid — changed her plans. 

Here's how that happened.  

When we checked into our hotel in San Diego, our girl caught a glimpse of the siteseeing brochures that lined a case in the lobby.* One of them was for the La Jolla Caves Kayak Tour. We've missed kayaking on the Hudson this summer after the sewage treatment plant fire that leaked untreated waste into the river during the hottest days of July.

I took this hotel-lobby-brochure opportunity to introduce the kayaking possibility.

"Hey Sweet M, what would you think about going on a kayaking tour of underwater caves?

"Underwater caves?" she asked, with mounting excitement.

"Yes, underwater caves."

"Well," she said, "When you're in a new place it is important to see the sites."

"So you'd be game to go to the underwater caves instead of a waterpark?"

"Oh yeah, underwater caves sound good."

And that was that. A plan was changed. A deal was renegotiated. Our girl's longtime inflexibility is giving way to a willingness to try something new.

La Jolla Kayaking Tour at La Jolla Caves
 (photo: courtesy Yelp)

Her dad and I were a bit nervous about the kayaking tour. Her swimming skills are not great, and there was the matter of walking across the sand to the shore line since she still freaks out when her feet hit the sand. And then there was the hurdle of her making her way through the surf line out to the open water.

True to form, our girl started to freak out when her bare feet hit the sand

Ewwwwee.  It's sand.  It's scratchy.  Oh, NOOOO, there's an insect.  Did you see the insect?

Other people on the tour started to stare.

Fortunately, the folks at La Jolla Kayak were awesome. They put our girl in a kayak with Tommy, a seasoned former lifeguard, so she was in incredibly competent hands.

I told our girl to take some slow deep breaths because pretty soon her feet would be in the kayak and there would be no sand.

And that's what she did — she headed right out through the surf line with Tommy.  She was terrified, but she did it.  And once she was safely past the breaking waves, she was full of questions for the guides: what are these pink things on this kelp? (sea anenomes that attached to the kelp because the water has been so cold); are those sand sharks camouflaged? (yes); where are the sea lions? (it's too overcast for them to hang out on the rocks today).

We couldn't have been more proud of our inquisitive seafaring kayaking girl.

Pelly's Mini-Golf Course in Del Mar

The next day we hit Pelly's mini-golf course in Del Mar and the Octopus's Garden by the Sea exhibit at the Sea Life Aquarium in Carlsbad, which has my vote for best aquarium ever because it's just such a perfect scale for kids and families. They have all sorts of multisensory experiences: tide pools for petting starfish, tactile displays of shark skin, whale skin and eel skin, and the huge underwater tunnel with sharks and rays swimming above.

It was a perfect day of mini-golf and underwater creatures, sans water park slides and slimey waters.  Since that afternoon, I haven't been able to get the Beatles tune out of my head  . . .

I'd like to be, under the sea
In an octopus' garden in the shade
[. . .]

Oh what a joy for every girl and boy
Knowing they're happy and they're safe
We would be so happy you and me
No one there to tell us what to do
I'd like to be under the sea
In an octopus' garden with you . . .
In an octopus' garden with you . . .
In an octopus' garden with you . . .

Our world may never be as safe and easygoing as Ringo Starr's Octopus' Garden in the shade, where no one tells us what to do.  And none of us will ever be as flexible as our octopus friends.  But I think I can say we're stretching every day.

*I was in San Diego for the Blogher 2011 Special Needs Mini Conference. More on that soon! 

Goodbye to MMX!

It's goodbye to the year MMX!

Though it was far from fabulous, even 2010 had its highlights: amazing speech therapy focused on language-pragmatics that's gone a long way toward helping the sweet girl with her social interactions, another sleep-over camping adventure with her classmates (this time without us in tow as we had to be in 2009: whoa-hoo!), fun get-togethers with another Pokémon fan, and the amazing big one-three-birthday for the girl, which did leave us asking that most clichéd of questions, the one about where did the time go.

Those are some of the good things that have made it into this narrative.

There are lots of other things that haven't made it into the story: emergency medication changes when frustrated outbursts returned at school; disappointing (even disturbing) experiences with a behavioral consultant whom we had grown to love but who seemed, in the end, to put doctrine and dogma ahead of heart and healing; and plenty of nights lying awake wondering how our girl will be getting along five years from now — when she's exiting her teen years rather than entering them.

What I'm left with at the end of 2010 and the start of 2011 is the reality that even with all of her growth and changes, that even with all her efforts and those of everyone around her, that our girl is quite different than other girls. Very, very different. And she probably always will be.

We've known since 2005 that this was more than a little speech delay and low-frustration tolerance that she would grow out of. And we've known since 2007 that the social challenges that our girl faces are not easy to remediate. And now we know that some things are mutable and some are not. She's learned to read, against the dire predictions of some naysayers. Her social skills, while limited, are evolving. And, with the help of an SSRI medication and lots of behavior interventions, she's developing a somewhat enhanced capacity to think before responding.

And so, looking back at the last five years of this blog, and looking forward to the next five years of our girl's life, I wonder what's the best thing I can be doing for her? Hindsight is a poor substitute for foresight, but hindsight is what we get with this one-way temporality that we humans have. Don't you sometimes really wanna break out your crystal ball? I'd even settle for a friendly visit from the ghost of New Year's future as all these questions continue . . .

Should we send her to a school for kids who have more ASD-type neurology or should be keep her where she is, where she knows everyone and there are lots of neurotypical-ish models and high academic standards?

Should we apply for Social Security Disability since it's hard to know how she'll ever support herself, or should we continue to hold out the belief (which sometimes feels only like a hope) that she will be a fully contributing and self-supporting member in this society?

Should we move out of the city, or stay put because it is familiar and we have great doctors and other resources here?

Hopefully some answers will emerge in 2011. In the meantime, happy new year 2011 to all of you who share our life at Autism's Edges. Here's to year of unfolding answers! Any clues, crystal balls, or prognostications you may have are welcome!