Intensive Therapy: Out of the Starting Gate

Finally, finally! Yesterday morning Joy had her very first session of state-funded intensive autism therapy, almost nineteen months to the day after receiving the diagnosis of autism (just before Christmas, December 2006).

The first time we visited her primary care pediatrician after the developmental pediatrician made the pronouncement, she told us that we were fortunate that Wisconsin has such a fine program for intensive autism therapy.

Well, yes and no.

There's indeed a fine program in Wisconsin, funded in part by a special federal waiver that allows Medicaid funding to be spent for early autism therapy, without requiring that the families be in poverty to qualify. Each qualifying child can get up to three years of intensive therapy, with ongoing "post-intensive" dollars to follow. The problem is that the funding has not kept pace with the demand, and the waiting list is growing to frustrating proportions.

There's a fair amount of agreement that the gold-standard in inter-personal therapy for autism treatment involves 30+ hours of therapy per week, and the earlier you get started, the better. There are a number of intensive-level therapy programs & approaches out there, and our county offers a choice between two agencies that operate with the Medicaid waiver funding. More about the choices and their content later! What seems to be the commonality across the various philosophies is the many many hours of one-on-one face time, with lots of interactions and lots of documentation. And ideally, the therapist should be the most interesting and engaging thing in the room.

As you can imagine, this sort of intensity isn't cheap. Out-of-pocket, it's up to $60,000 per year, out of reach for most middle-class families unless you double-mortgage your home and drain your retirement funding and fundraise like crazy. We chose not to do so, instead continuing to pursue what therapy we could get for Joy through the Birth-to-Three early childhood program, and more recently through the school district.

I started making calls on the very day Joy got that autism diagnosis, knowing that the wait was long and getting longer. It was nearly two months before we waded through the initial paperwork and got a visit from a county worker to make sure that Joy looked like intensive-therapy material, and then two months more before they got all that paperwork processed and got her officially onto the waiting list, April of 2007. And then the months started clicking by. When she'd been on the list for a YEAR, the county sent someone out to "re-screen" her and make sure that we hadn't had some sort of magical recovery...

In the meantime, we've gotten involved in advocacy, both for Joy's sake and for others coming down the pike onto that awful waiting list. One of the ways that Wisconsin has attempted to rescue the intensive-therapy program without directly ponying up the money it would take to get everyone off the waiting list and into the program, is to require insurance providers to pick up some of the therapy. Currently, insurance providers in Wisconsin are NOT required to cover anything autism-related, so they don't. This year's attempt to make the insurance companies do the right thing went down in flames at the end of the legislative session, when the leadership of the Wisconsin Assembly used a weaselly substitute amendment to keep the autism insurance bill from coming to the floor (where it probably would have had the votes to pass!)

November's elections are very important...

Anyway, we're very happy to have the therapy available, and very happy to have two fully-funded choices. Not everybody has that advantage, and we're well aware of it. We're cranky beyond belief, however, about that waiting list. Talk about wasting public funds, letting the precious optimal months slip by!

We'll continue with the advocacy, of course. But now it's our turn for the therapy, and we're going to do our best to make sure that it's as helpful for Joy as it can possibly be.

What Is Happening in Her Head?

The following is an excerpt from a diary I wrote on Daily Kos about a year ago, July 2007. Most of it still applies!

========================

Not long after we received the autism diagnosis, I attended a program called "Autism 101" that was sponsored by our local Autism Society chapter. One of the presenters was an autism consultant who has autism herself, a professionally successful woman with a master's degree who wasn't diagnosed with autism until adulthood.

As part of the program, the attendees went around the circle and spoke a little bit about why we were there. I introduced myself and reflected on my daughter and her recent autism diagnosis, and what the diagnosis helped us explain and what it made even more confusing. One of the confusing things for me, I shared, was how to deal with boundary-testing: negative behaviors like swiping things off counters and flinging them, and dashing away at the least opportunity, that she never pulled at daycare but only with her parents. Such "trying it on" behavior felt like something a "normal" kid would pull, and yet we were having no success with setting those boundaries and getting her to respect them.

The autism consultant, I'll call her E., rocked me on my heels with her flat response. "I feel sorry for her," she said.

Ouch. Try being told in front of a public forum that the local expert feels sorry for your child due to your parenting!

And then E. told this story.

====

E. remembered very clearly one occasion where, as a child, she was being cared for by an adult other than her parents. One of the things that she did that day was that she kicked her caregiver in the legs, a good hard punt. Her caregiver was, quite naturally, furious. "No! Don't kick, you don't kick people! Don't kick! Now, what did I just tell you?"

"Don't kick," E. repeated promptly.

And then she smiled up at her caregiver and gave another good solid kick to the legs.

You can imagine what the caregiver said when E's parents returned. "She knew EXACTLY what she was doing. She knew she wasn't supposed to kick, she even said 'Don't kick,' then she smiled up in my face and hauled off and KICKED ME AGAIN!"

====

What was happening in her head?

E. couldn't articulate it then, but these many years later, there's a lot she has to tell about the incident.

First, it felt GOOD to kick. Many (most, all?) people with autism have a sensory component to their condition, in which their sensory systems are differently wired. Sometimes they become overwhelmed by too many noises or too much to see and can't sort out what's important. Sometimes they can't stand particular kinds of touch. Sometimes, on the other hand, they crave intense touch or pressure, and literally need that kind of stimulation to be able to focus. Kicking creates pressure. It felt good.

Second, E's repetition of "Don't kick" didn't mean what the caregiver thought it meant. Many people with autism have echolalia, a twist on communication which allows them to repeat quite precisely what they hear, either immediately or some time later, without necessarily understanding it. People with autism can produce strange results on speech evaluations; neurotypical language-learners generally understand more than they say, but with autism and echolalia, it's entirely possible to say more than one understands. So, when E. repeated "Don't kick," she didn't actually "get" it.

Third, people with autism (many, most, all?) tend to think in pictures. The author and livestock handling equipment designer Temple Grandin, who also has autism, is perhaps the most famous voice on this subject. In fact, she wrote an autobiographical work called Thinking in Pictures: My Life With Autism. To Grandin, words are like a second language. Pictures are the primary means that she experiences what is happening in her head. E. thinks in pictures as well. And when you think in pictures, E. explained, the words that make the most sense are the words that can most easily be expressed in pictures. "Kick," for example, is a nice easy one. "Don't," on the other hand, is not. (Quick, everybody, think up a picture in your mind of what "don't" looks like...) So when she heard and said "Don't kick," the important part of the instruction was the "kick." And kicking felt so good, and how nice it was to be invited to kick again! So she kicked.

====

I'll add yet a fourth aspect to the frame of the story, and that is that many (most, all?) people with autism have challenges interpreting social situations. So when E. publicly declared her sympathy for my poor misunderstood and mis-parented child, I had to take a huge deep breath and remind myself that from her autistic context, perhaps she was not able to project how her brutally-honest words might make a neurotypical mama feel.


What is happening in her head?

There are several parts of E's story that make a great deal of sense in my daughter's context. My daughter definitely has sensory issues, and is in general a sensory-seeker. Running feels good, and jumping, and crashing into things, and splashing in water, and climbing, and teetering on the edges of things -- one of her therapists suggested that the teetering helps her "feel" where her body is in space. She loves activities that provide deep pressure, and she seems to be more focused immediately after such experiences. My daughter also keeps testing higher for expressive language than for receptive language, which puzzled the heck out of us until the autism diagnosis. Not that she repeats long strings of things clearly or accurately, but she does say things that we're not sure she understands, including the word "no." (Her expressive vocabulary, just for context, is about 80 individual words, mostly nouns, not used in combination, and mostly poorly articulated.) [NOTE: this has changed; Joy is now down to 15 words or so, but clearly understands much, much more than she says.]

I'm still floundering around somewhat with the idea that all people with autism necessarily think in pictures. Autism is such a combination-platter diagnosis. There's no blood test or anything that definitive. Instead it's a clinical judgment call, based on psychological criteria in the DSM IV. There are three categories of criteria for autism: social, communication, and behaviors/interests. Each category has four criteria, which one might call symptoms. To receive a diagnosis of autism, one must fit two of the social symptoms, at least one each of the communication and behaviors symptoms, and a total of six symptoms across the board. (Here are the categories and criteria for the autism diagnosis.) I don't have the mathematical chops to figure out how many potential combinations that is, but it's pretty clear that people with different levels of different combinations of different symptoms can "present" very, very differently and still receive the same diagnosis. Neither I nor my husband nor any of my daughter's therapists were expecting a diagnosis of autism when we took her to the developmentalist who diagnosed her. Our daughter is affectionate, loves peek-a-boo games, has a sense of humor, and just didn't fit what little we knew of autism. And yet the doctor pegged her for nine of the twelve criteria. The combinations can be that subtle.

What generalizations are fair to make under those circumstances? Ooo, I wish I knew!

Linear Nevus Sebaceous Syndrome, or, another order of noticing things

Update! I'm pleased to announce a new resource for linear nevus sebaceous syndrome, called LNSS Connections. The site introduces linear nevus sebaceous syndrome & related neurocutaneous syndromes, and links to a new support group for people dealing with LNSS. Please come check it out!

=======

There's another layer to what we noticed when.

Joy was born with a visible sign of things to come, a blotch on her scalp -- that's a newborn photo at right.

On the first day, it was written off as maybe a scrape. On the second day, the word was linear nevus sebaceous. It was, we learned, a fairly common blip, a blotch of inappropriate dermal tissue packed full of oily glands -- hence the "sebaceous" -- on which no hair would grow.

JoyDad went online and found some rather scary pages about linear nevus sebaceous syndrome, accounts of kids born with nevi all over their faces who ended up with various combinations of other symptoms involved: blind, deaf, serious cognitive impairments, severe epilepsy. However, I don't remember him making a big deal of those findings to me, because the message we got from the doctors was that most such nevi have no further implications, beyond the cosmetic issue and a somewhat elevated chance of pre-cancerous changes further on down the road. The nevus wasn't even expected to grow, beyond just keeping up with her head. (Nine-months photo above left; the blotch was peach-colored most of the time, turning bright pink when the rest of her face went red, as in a crying jag or the like.)

We consulted with a pediatric plastic surgeon, who ended up doing three outpatient surgeries over the course of a year, the first when Joy had just turned one. No complications from the surgeries, other than a scar that her hair grew to cover, with a promise of potential scar reduction surgery some years later.

The seizures started between the second and third surgeries, at age 15 months, summer of '05. They deserve a post on their own, so I won't go into a lot of detail except that we have an excellent pediatric neurologist, who even happens to be a fine Boggle player! He first floated the idea that the epilepsy and nevus might be related in summer of '06, but in such a low-key way that we didn't really glom onto it and press him for more details and a definitive diagnosis of linear nevus sebaceous syndrome (LNSS) until November of that year.

LNSS is a rare congenital disorder that was first identified in 1957 and then independently in 1962, and is also known as Feuerstein-Mims-Schimmelpenning Syndrome. My understanding is that it's rare to the point that the number of cases in the US numbers in the 100s. It's a genetic disorder but a mosaic one, so it's only happening in the affected areas rather than systemwide and there's no blood test for it. The classic triad of symptoms are the nevus (check), epilepsy (check), and cognitive issues (check). It can also, however, include a whole slew of other systems such as eyes, ears, skeletal, and genito-urinary, and sometimes a diagnosis will be made if one of the triad is missing but some of the others are present.

We are fortunate that Joy seems to have the classic triad, and nothing else. She's seen a geneticist, had her eyes checked (one of the most stressful doctor visits we've ever had, but that's another story), and had her hearing checked (inconclusive because she has the attention span of a gnat, but we don't have any evidence for being concerned).

For Joy, LNSS makes sense as an umbrella diagnosis that more or less explains all the rest, including the autism. However, it doesn't give us much guidance as to what to DO about any of it...

I'd link to a good summary site, except I haven't found one that I liked recently! There isn't even a Wikipedia entry, for cryin' out loud. I haven't found an online support group specific to LNSS either, though there is an Epidermal Nevus YahooGroup that gets sporadic traffic, where a variety of kinds of nevi are included and only a few of the participants are dealing with the syndrome beyond just the nevus. Maybe there's a mission for me in that lack of information, at some point.

When did you first notice...?

Autism takes so many forms, so many paths. (Perhaps you've heard the phrase "if you've met one person with autism... you've met ONE person with autism.")

Each family has a different answer to the question "When did you first notice that something was unusual about your child?" That question came up repeatedly as we went down the path of seeking a comprehensive diagnosis for Joy.

So here's my answer:

We had two big measuring sticks for Joy's development. The first was her older sister Rose, born 28 months earlier. The second was Joy's daycare buddy, a little guy just two days older. Our families did a daycare swap for the first two years of their lives, so she had an exact age-mate who was always there.

Physically, Joy did some things before her daycare buddy, such as rolling over and crawling (and maybe walking too, if I'm remembering right). Those were all things she did at an earlier age than her sister too.

On the other hand, her sister was a verbal whiz, with 75 words by 14 months. Joy wasn't doing that. She seemed to have some babble, and I kept trying to count words, but they just weren't coming. Plus I'd think I was hearing a word, write it down, and then it would disappear. Elvis sightings! but we didn't know it then. Her daycare buddy wasn't as verbally precocious as her sister, but he eventually started to pull ahead with words too.

Those weren't immediately definitive, though. After all, there's a wide range of normal, and we kept reminding ourselves that comparisons can be less than helpful.

The first unmistakable red flag was a certain CD-player toy that we brought out at the age of about 10 months. If you pushed the yellow button on top, the "CD" would spin, colored lights would flash, a song would play. Then there was also a little noise-making barrel to spin, and a couple of noise-making buttons to push.

All Joy wanted to do was spin that barrel. She had a toy in her crib with a similar barrel, which in that case was the correct trigger to light the lights and play the music. But the CD toy required the push of the yellow button.

We showed it to her daycare buddy, and he "got it" right away. Showed it to him once, he was making it go again and again. Joy, on the other hand, took two weeks to get the idea, full of demonstration and hand-over-hand.

Another memory that really sticks out for me was some time later, age 18 months maybe, when we were embarking on early childhood Birth-to-Three evaluation. I commented to the first caseworker that when Joy and her sister and her buddy were at our front window, and I'd be pointing out something like a squirrel or rabbit, Rose and daycare buddy would take an interested look and Joy generally would not. I remember a bit of self-deprecation as I said that, qualifying it with a "maybe I'm imagining things-- might not be important anyway."

I wasn't imagining things, and it's important.