In 11th grade I took a computer programming class - computers were brand new technology at the time and the teacher knew little more than the students so it was definitely a wide open frontier. The computer was an excellent tool in that programming forced my adolescent brain into a type of linear and logical thinking pattern that I still find useful today.
The teacher often had us work in pairs on larger projects and I had an excellent programming partner. We regularly challenged ourselves with writing complex programs and we were sometimes over-ambitious. One particularly complex program we attempted was to write a 'Blackjack" program. I remember how excited we were when we got the cards to print correctly on the screen. This was high-end stuff for a couple of high school kids hacking away on a TRS-80 Model III computer!
Our Blackjack program became increasingly complex, and as we attempted to make accommodation for ever increasing complexities the programming code became more and more jumbled. What began as a linear progression of thought devolved into endless subroutines of special-case if-then propositions. It became classic "spaghetti programming" and it was a mess.
Eventually the project became so large and so confusing that it couldn't hold the interest of our adolescent minds - and so we moved on to easier programs.
I re-experienced all of these frustrations this morning when a parent walked into my office with her 7 year old child and asked, "Do you think that my child has a sensory integration problem?"
In my linear programming-oriented mind I have learned not to bias myself when I hear this kind of question. Sometimes when you are posed with a clinical problem you can start off by taking the individual strands of uncooked spaghetti and neatly ordering them as you tick off questions and answers. Eventually, you can sometimes reach a perfunctory conclusion based upon the obvious pattern that is evident on the differently ordered and arranged piles of uncooked spaghetti. AHA!! The problem is XXX! I like when the world is ordered and things make easy sense.
I was not so lucky today because I heard the parent say, "My child has congenital adrenal hyperplasia." My hope of neatly ordered piles of uncooked spaghetti disappeared as I imagined the water boiling and having to dump all that pasta into the pot for cooking.
Congenital adrenal hyperplasia, in general, is a condition where there is a problem with the body not producing enough corticosteroids. As a result, many children with this condition have to take replacement hormones. Additionally, there is the issue of impact from long term increased exposure to higher levels of androgens.
The parent described auditory defensiveness problems, difficulties with high activity level, and some behavioral rigidity. His 'symptoms' reportedly vary in intensity and are intermittently problematic. Here is where I felt stuck with the parent's report - is it possible, or even likely that the symptoms are nothing more than a reflection of his fluctuating ability to maintain a functional physiologic coping mechanism because of a complex psychoneuroendocrine disorder? I know enough about cortisol and stress responses to understand that this child has no physiologic basis for stability - and indeed is dependent on Cortef and Fludrocortisone to maintain as much of a steady state as possible. At the same time, I am also aware that most research says that although young girls with this disorder demonstrate more 'masculine' play behaviors and agression that this is not the case for young boys.
Now - does this represent a fundamental gender difference between the way that adrenal hyperplasia can be phenotypically or behaviorally expressed??? Or does this represent something odd about our cultural tolerance for varying levels of so-called 'agresssive' or 'hyperactive' behaviors in boys?
The reason why these questions matter is because we can then have a context for developing some kind of intervention plan. Certainly, if a child has an underlying endocrine problem it is not likely that we will fundamentally alter that condition with external stimuli. However, we might introduce calming activities for parents or teachers to try in case they see that behaviorally things are 'ramping up.' Listening to calm music, petting your cat, etc. all can contribute to lower cortisol levels - these are activities to consider because cortisol level may not be optimal at any time for someone who has adrenal hyperplasia. Conversely, caregivers (including teachers) need to understand what the behavioral markers are for impending adrenal crisis and how to obtain medical intervention when needed. The problems can be bidirectional, and the response from caregivers has to be dependent on the fluctuating signs.
What complicates this is that psychoneuroendocrine responses don't occur in a vacuum - they are also influenced by behavioral patterns and habits that are established following a lifetime of sucessive responses and reinforcers. And sometimes - kids are just kids and don't listen to adults.
Now we have fully-cooked spaghetti, ready to be heaped in a mass onto a plate for consumption. I couldn't even try to answer this parent's question about whether or not the child had a sensory integration problem. That is frustrating.
In the end, I am able to recommend a home program of calming activities and signs to watch for that are indicative of arousal and fight-or-flight responses that are out of balance. I am able to provide some common sense suggestions for activity pacing - and considering ways to make environmental and contextual modifications to limit sensory overload. I am able to encourage an activity configuration that balances structure, goal-setting, and positive socialization in addition to allowing for pedal-to-the-metal raw energy release. I am able to promote what I call high-intensity parenting because their need for educating other caregivers is critical. I am able to express that behavioral expectations can't be tossed out of the window and it is STILL important to maintain some measure of expectation and standard for appropriate contextual behavior. Also, in the long run we need to provide a cognitive-behavioral program where the child is able to increasingly learn how to attune to their own regulatory state and make activity choices to address changing needs.
I am not sure where this spaghetti mess begins or ends, and I do not know that it is a sensory integration problem - whatever that is - but whatever it is the child and family clearly needs some help. From a programming and logical-order perspective the problem represents an epic failure in our ability to 'name' and 'plan' interventions.
I am hopeful, at the least, that understanding the complexity will prevent me from introducing special-case if-then propositions. I learned in 11th grade that these methods don't contribute to a good final product.