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.  

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! 

At Last We Are Muggles

At last we are Muggles.

Well, I suppose we have been Muggles ever since J.K. Rowling came up with the term, but we just didn't know it.

And at Autism's Edges, it's just begun.

For years our girl had too much anxiety to watch the Harry Potter films.  What with their slithering snakes, creeping giant arachnids, and swirling Dementors, they were simply too terrifying. Imagine you have a photographic, or rather videographic, memory and you're never going to be able to erase that scene of the spiders marching off by the thousands into the cavern from the Chamber of Secrets. Or that you'd be haunted by the undead who emerge from the gray waters in Voldemort's cave in the Half-Blood Prince. It was too much.

Just to keep somewhat in step with popular culture, I'd wait for the DVDs to come out and watch at night when our girl was sleeping.

I'll admit that seeing our girl so out of sync sometimes made me sad. I wanted our girl to be in step with other kids, eager to see the films, read the books, and enjoy the fantasy adventure. With the arrival of each film, it was clear that we were not even normal Muggles.

But this year, everything is different. This year, as the final film of the series was released, our girl was ready to get started with it. We've been catching up, DVD by DVD. Last night we watched the Half-Blood Prince and our girl reminded me of her amazing memory, as well as her moral sensibility.

Why do you suppose he'd do that? she asked after Draco had knocked Harry unconscious.

I don't know, I said. What do you think?

Actually, she said, I blame his father.

Why do you blame his father?

Don't you remember?  His father worked for the darkkkk lorrrd, she said, modulating her voice to reflect the creepiness of Voldemort.

Actually I hadn't remembered.  I don't remember that much from movie to movie.  The details of the world of Hogwarts elude me as I focus on other things that require my finite neural networks. But I can relax, because our girl is keeping track with her rather magical memory.  I can carry on with my muggle mind because there's some kind of magic in hers.

Summmmertime, and the livin' . . . (Part 2)

For the most part, our summertime this year been easy. But there's a final verse to Gershwin and Heyward's tune that has resonated mournfully across the season:

One of these mornings
You're going to rise up singing
Then you'll spread your wings
And you'll take to the sky.

But until that morning
There's a'nothing can harm you
With daddy and mammy standing by.

This summer has been marked by that excruciating reality that no matter how watchfully we stand by, there is still the chance that something will go horribly wrong before our kids take to the sky.

Every week there seems to be a new version of every parent's nightmare: losing a child because you allowed him walk a few blocks alone in one of the safest neighborhoods in the city, or sent her to summer leadership camp on an idyllic island in one of the safest countries in the world, or let your adult child exercise his right to live independently, even if that meant living on the street. The names that accompany these losses are specific: Leiby Kletzky, Utoya, and Kelly Thomas.  But the loss in every case has in it something mythic: the theft of a child, the slaughter of the innocents, the parent who outlives their progeny.

Our girl wants so desperately to be able to go out on her own, down the block to the corner store or around the corner to the newsstand to buy her favorite spearmint gum. This summer we have taken the small step of letting her go on her own from a cab into the building where her summer technology class is, but we are far from letting her head out onto the streets alone.

Last week a colleague and I were talking about how I was spending my summer — camped out on the Upper West Side having meetings or working on my laptop while our girl takes her technology workshops. We live just far enough away that it doesn't make sense for me to drop her off, go home or to my office, and come back to get her later. When my colleague asked how old our girl is, I shared that she's thirteen.

Without a pause, he went on to tell me about how years ago he let his seven-year-old walk to the bus on her own in the East Village, and take the bus across town to her school.  He said he would trail her down the street far enough away that she didn't notice him, but that he had to let her go on her own.  That, he told me, was the same year that six-year-old Etan Patz disappeared in our neighborhood. His daughter, now forty, was a schoolmate of Etan's. As with Leiby Kletzky, Etan had begged to go out on his own, and the day he went missing was his first time out alone. Unlike Leiby, Etan has never been found.

I took my colleague's comment to suggest that the world is a scary place but that perhaps I should be giving a thirteen-year-old more freedom.  Perhaps, as with the super-safe playgrounds that seem to promote anxiety disorders, that there is more danger in our levels of caution than there would be in having more faith in our kids and in our neighbors.

But somehow we're not there yet.  We're still daddy and mammy standing by.


The copyright for the lyrics to "Summertime" is held by © Warner/Chappell Music, Inc., EMI Music Publishing. Used here under the fair use provision of U.S. copyright law.

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.