Thursday, July 24, 2008

How can you possibly choose?

Joy's big sister Rose, age 6, had to visit the doctor the other day. I took her because her teacher had been concerned about frequent urination -- Rose had been visiting the potty some 15 or 20 times a day. After ruling out infection, the pediatrician said, "Well, I could send you to a pediatric urologist, but I know the first thing that they're going to do, and so I may as well just prescribe it for her if you want." The automatic first-line therapy turned out to be a laxative, on the theory that an emptied bowel can't put as much pressure on the bladder.

Part of me would very much have liked things to be that simple when Joy's autism diagnosis came down!

But there is very little that is automatically recommendable when it comes to autism therapy. Autism comes in so many darn flavors, and it seems there's an argument about practically everything related to autism:
  • What causes it
  • Whether or not it's curable
  • Whether or not one should even approach it in terms of a cure
  • What therapies are useful
  • Who should pay for what
  • and on and on.

The therapies themselves are a stew of acronyms and fancy monikers: DAN, ABA, DIR/Floortime, RDI, Sonrise, GFCF diet, nutraceuticals and more. And our doctors were willing to provide information sources and opinions, but we didn't get prescriptions. The legwork and the decisions were to be ours.

The answer to what therapies are useful depends to a great extent on what you believe you're treating. In Joy's case, we had a genetic explanation ready to hand (the linear nevus sebaceous syndrome), and since there's no miracle fix for that one, our focus from the beginning has been on support and education and quality of life all around.

The decision-making was helped only somewhat by the intensive therapy options approved by the state of Wisconsin and offered in our county. As I mentioned in my last post, there are two options for going down that road: Agency 1 offering Applied Behavior Analysis (ABA)., and Agency 2 offering a house blend of relationship-based therapy, heavily reliant on DIR/Floortime and the Communicating Partners work of Dr. James MacDonald.

Agency 1's offering, ABA, is the therapy with the longest history and the richest publication history. ABA practitioners use positive reinforcements to elicit and reward behaviors (verbal, social, motor) step by step toward specific instructional goals. Enthusiasts claim a high success rate, raised IQs, and improved abilities to function in society. Critics say that if you're all about training behaviors, you get... a bunch of trained behaviors, and not much else.

Agency 2's offering puts the focus on relationships as the context for learning. The theory goes that first you work on eliciting an engaged, persistent, interactive relationship partner, and then you can work on specific content. Enthusiasts say that it only makes sense to start with relationships, because so much of autism has to do with relationship challenges, and point to great outcomes too. Critics say that it's a lot of money to pay for gussied-up playtime.

Even between these two very different approaches, I was feeling indecisive. (Think Tevye in Fiddler on the Roof: "On the one hand... on the other hand... on the OTHER hand...") In the Autism 101 session I attended in February 2007, one of the questions I asked was how in the world one decided between even those two options. The moderator of the session, president of the local Autism Society chapter, reassured me, "You'll know." She said that after reading up and then visiting both agencies, most families find it quite clear.

I didn't believe her, but she was right.

We did an initial intake visit to Agency 1 first. I was very impressed with the intake coordinator I had spoken with on the phone. But the expert who did the evaluation and modeled bits of the ABA therapy didn't get much joy out of Joy. She didn't "light up" for the little requested behaviors, just wanted the treats without the work. Plus when we mentioned the centrality of her sensory issues (all sensory-seeking, all the time!), the response was, "We don't believe in sensory integration disorder." Hmm.

Then came Agency 2. I hadn't had such a good phone experience with the intake coordinator, who was subbing for someone on maternity leave. But the expert who did the evaluation was able to elicit a very different Joy than the one who showed up at Agency 1. Joy seemed comfortable and happy, and ready to interact. Furthermore, we learned that sensory support was integral to their approach, on the theory that a child whose sensory needs aren't being met isn't going to be in the zone for much of any learning at all.


So Agency 2 is the outfit that we're now starting with. We had an initial workshop meeting at the beginning of the week, and have had several in-home sessions as our team members get to know Joy and the family. Joy has been receptive and charming so far; no surprise, as the initial sessions are structured to be very much child-led, so nobody's explicitly asking her to depart from her own agenda so far (though they are getting her to do a lot of interaction and game-playing that is very much their idea of how to expand on her agenda!)

The dilemmas about what kind of treatments to pursue weren't all said and done in this one decision, of course. We've still got the annual dance with the school district, and the whole epilepsy side of things, and more. But this is a big step and a big directional choice.

Meanwhile, about Rose and her potty trips. The laxative had an immediate and pronounced effect, at the lowest dose, and it's not the one you're thinking! It was a placebo effect. The very first day Rose took the medicine and started having to keep track of her potty trips, the number of trips dropped down to something like four or five.

Who knows what therapies are going to produce what results?!


Maddy said...

I think the 'key' for me, wasn't really in the 'experts' qualifications, experience or approach, it was more whether they could form a relationship with either of the boys. If there was chemistry there was magic, otherwise, without it, there was no spark at all.
Best wishes

Anonymous said...

Fortunately for us, Joy is a people person. We've only had one therapist crash and burn where Joy just did not connect with the therapist at all. Given the number of therapists we've cycled through (Birth-to-Three, school district, other miscellaneous therapy, and now the intensive services) that's a pretty amazing record. We'd like to take credit for it (really!), but it's all on Joy. She is something else...

Hopefully, being a people person will help Joy not just with therapy but with life in general.

JoyMama said...

Re JoyDad: And yet -- lest anyone should think "why is such a people-person in need of autism therapy?" -- Joy definitely has plenty of the social deficits that characterize autism. The biggies are: "failure to develop peer relationships appropriate to developmental level" (her peer interactions are minimal, though she likes to be around other kids); and, "a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)." Joy doesn't share her interests with us like that. She pulls us by the hand when she wants us to come somewhere, but doesn't ever express an equivalent of "hey, this is cool, check it out!" Abnormal eye-contact figured into her diagnosis as well, though she's gotten a lot better about eye-contact.

Being a people-person is a big asset though, I agree. (Maybe she inherited that from her daddy?)

Tahirih said...

Maddy left a comment on my blog which took me to her blog which took me to your blog--and often it is the case that I could not identify my route so easily! Anyway, I very much like this post. It summarizes the issue of all the choices parents must quickly make so well. I am an SLP and work in a very parent involved way with children who have ASD. I am bias toward a play/relationship based intervention but, like Maddy, I believe that the "just right" therapist looks just right pretty fast and parents should trust their own judgement.

Trish said...

I usually boil it down to "follow your gut" when making these kinds of choices. For my son, he did respond very well to a Floortime/sensory integration approach. We did Dynamic Listening with an OT who was qualified in both of those areas and it made a big difference for him.

PA just passed a law requiring regular insurance to cover up to $36,000 per year related to autism dx; not sure how it is going to affect our Medical Assistance coverage or whether my husband's insurance will follow along (they are self-funded and not required to do so).

It's so nice to meet you, followed you here from Maddy's blog.

Casdok said...

Yes i always follow my gut, and so far it has proved to be right (thankfully!)

Anonymous said...

As usual, JM, you are both succinct and cogent. Wish I could be more like you - esp in the succinct part - thus my nickname BRatK - Run-at-the-Keyboard. In looking at that again, might require further explanation...I leave long comments....sigh. But the JoyFamily tolerates me, and the nickname makes me feel like a member of the family. Smile.

JM's lead-off with the diagnosis and treatment of Rose's symptoms is helpful to make a point - autism is not a diagnosis with physiological underpinnings. It is a behavioral diagnosis. My opinion is that this fact is the source for the many questions JM poses.

Today (18 Jan 09) there is a relevant post at 5 Minutes for Special Needs. A mother of two children on the spectrum gives succinct advise in how to make decisions for your child(ren).