Bedwetting: Teenage Rebellion, Autistic Style

Adolescence, a period of transition, can pose a tremendous challenge for caregivers as their teenagers teeter between the innocence of childhood and the looming reality of adulthood. Buffeted by hormones, adolescents exhibit challenging attitudes ranging from inexplicable moodiness to rebelliousness assertiveness. This in itself can be sufficiently nightmarish for most parents. However, being a caregiver of an adolescent with autism can bring with it a unique set of challenges that can make you feel like you have once again ventured into uncharted territory, even though you should be feeling like a seasoned veteran.

Sebastien, my 13-year-old son, is moderately autistic with significant language delays. Thus, at the beginning of this phase, his teenage rebelliousness was imperceptible at first, camouflaged by language delays (“Maybe he didn’t understand me”), sensory deficits (“Maybe he was tuning me out because the surroundings were too noisy”) or perseverative behaviours (“He really can’t help himself”).

Then I began to see unmistakable patterns emerging:

A simple “Yes” answer that typically took 5 seconds to elicit now took almost 30 seconds, along with prompts and threats.
I needed to make my request to turn off the light three or four times before he would do it.
When I gave him his special treat, he blatantly enjoyed it without betraying a tinge of gratitude; instead of his former radiant smile, all I got was his steely disregard.

With a deep breath, I braced myself for my entry into the wonderful world of teenage rebelliousness, autistic style. Here we go…

Having dealt with Sebastien’s behavioural problems in the form of tantrums and aggression for most of his life, none of his defiant behaviours was particularly new to me. I increased my vigilance in overseeing his behaviour and tightened the use of my customised combination of carrots and sticks (the provision and removal of his privileges) to “persuade” him to adopt the right course of action. Though the implementation was tiring, it was largely business-as-usual.

Then Sebastien did something that really stopped me in my tracks and caught my attention:

He bedwetted!

As I often prided myself on my ability to anticipate Sebastien’s moves like a consummate chess player, I was taken completely aback by this unexpected development. Plunging headlong into my “crisis” mode – my hypervigilant state when I am confronted with a “Sebastien” problem, I sought answers to the questions that exploded in my head: Why was a boy who had not bedwetted since he was toilet-trained doing so at 13? Could he be “regressing” – the most dreaded word for any caregivers of autistic children? Was he having wet dreams? Was he sick?

Before my panic escalated any further, my mind drifted over the bedwetting landscape that had been morphing for the past week. I also took into consideration the larger picture of Sebastien’s overall development in other areas. I arrived at the following conclusions:

First of all, he bedwetted on the days in which there would be a deviation from the routine. (I typically informed Sebastien of our activities for the next day the night before.) When there was no change in the routine, he did not bedwet at all.
His bedwetting ranged from flooding the entire bed to simply wetting a patch on his underwear: this indicated a considerable amount of control on his part.
Considering the fact that Sebastien had been showing tremendous initiative and taking pride in skating, arts and crafts activities and even household chores, I ruled out regression as an explanation.

For a few moments, I still could not put my finger on it, but there was something suspiciously calculated and controlled about Sebastien’s bedwetting behaviour. And then it hit me: Teenage rebellion has reared its ugly head in the form of deliberate bedwetting!

Here was the autistic version of a typical adolescent screaming “I hate you!” to his parents as he bangs his bedroom door shut; or gelling his hair into porcupine spikes and coming home with scary piercings. For an autistic adolescent of few words and limited resources, bedwetting is a sufficiently obnoxious act to make it a perfect instrument of protest and defiance!

On the outside, I rose to the challenge by instituting a zero-tolerance bedwetting policy. I implemented a harsh behavioural management approach of making him wash up his bedsheets and clothes, as well as stripped away virtually all of his privileges such as the removal of an entire wall of his beloved colourings that he displays with tremendous pride all over the apartment.

Though this concise summary of my behavioural management approach sounded crisp and clean like a military drill, it really took a heavy toll on me. Each morning, throughout this bedwetting saga, I woke up with a knot of fear and anxiety, a cocoon holding the butterflies just waiting to burst forth in my stomach. I dreaded the prospect of being greeted by a room reeking of the pungent, ammonia-tainted aroma of urine.

As though my roles that accompanied my job as a homeschooling mother of an autistic child (such as teacher, body guard, banker, drill sergeant, discipline master, etc.) were not enough, I took on a new and interesting fusion role of an interrogator-cum-pee-sniffing hound. My daily procedure began with my stern interrogation of Sebastien with my stern “you-are-presumed-guilty-till- proven-innocent” voice:

“Did you pee in your underwear?”
“Did you pee in your pajamas?”
“Did you pee in your bed?”

Then we proceeded to his bedroom. With my heart pumping hard and the knot in the pit of my stomach tightening, I would swing the door open with a dramatic flourish. At the first whiff, I would know how the rest of my day would be – one when I either get to be a homeschooling mother or a Guantanamo Bay warden. Worse still was the sinking feeling that I had not resolved the crisis, which meant that the prospect of this nightmare dragging on interminably into the uncertain future was still very real.

In short, my well-being for that day was held hostage by whether Sebastien had bedwetted or not; the choice he made would essentially “make” or “break” my day. It got to the point that the smell of pee seemed to have taken pride of place in my olfactory system. I found myself straining to catch the whiff of pee at all times of the day.

The daily practical inconveniences and my growing paranoia aside, I was also troubled at a deeper level, on the inside. Something in my gut told me that there was so much more to Sebastien’s bedwetting than met the eye. Amidst much chest-thumping about my needless sacrifices of homeschooling to bring up a bedwetting blackmailer, I did some serious soul-searching. Had I done the right thing in homeschooling Sebastien? Was Sebastien’s bedwetting an indicator of the failure of my homeschooling journey? If not, how could I support Sebastien in asserting his independence and initiative in more constructive ways?

During this period, I read up on autism and adolescence, talked with trusted friends to gain insights and ideas, cried copiously and reflected even more. It was a difficult time in which the temptation to just pack my bags and abandon Sebastien to his own devices lurked ominously. Of course, it was quickly dismissed by my self-castigation for having such negative thoughts about my son whom I love more than life itself.

Then, one fine day, I emerged from my gut-wrenching reflections with some answers. First, I was certain that I had done the right thing in homeschooling Sebastien. The fact that Sebastien, at the age of 13, is asserting his independence from me and engaging in age-appropriate teenage rebellion, testifies to his growth and development. Although he possesses considerable communication deficits, Sebastien exhibits self-assurance and confidence in his interactions with the world. He has even risen to challenges such as cooking and slogging through his grueling workouts with a fitness trainer.

Even more significantly, I also realised that Sebastien’s assertiveness of his independence had raised the terrifying spectre of the day, in the increasingly less distant horizon, when I would have to “let go” of Sebastien. “Letting go” is a rite of passage for all parents, but one that is made all the more terrifying when the child has special needs.

Yet, there is no question that even though Sebastien is only 13 and is affected by his delays, he will still go to tremendous lengths to register his protest against me. While I may not like the method of his protest, I cannot ignore his fierce assertion of his desire for a life in which his voice could somehow matter. He has become a young man who is striving to grow up in the face of his deficits that can often make me forget that he has progressed significantly from the fearful and miserable boy he once was.

Ultimately, I concluded that this bedwetting episode was a wake-up call for me to prepare for the “letting go” phase of my homeschooling journey of Sebastien. To help Sebastien to grow up, I need to give him the opportunity to make choices, enable him to display initiative and expand his sphere of activities. I should also be more respectful of his rigid preferences by acknowledging the imposition my request for change has on him.

At the same time, I will continue to mete out consequences firmly in response to his poor choices. However, the chief difference this time round is that I will not cling on to the tacit hope that he would make the right choices. While I can do all that I can to motivate him to make the right decision, I have to accept that Sebastien, the young man, in his need to find his own way, would often make the wrong decisions. If I were to get upset every time he defies me, I would be a basket case in no time at all.

Since my “awakening”, I feel as though an awesome weight has been lifted from my shoulders. I have come to terms with the fact that I have to go through this phase in order to help Sebastien in the challenging transition into adulthood. I look forward to the day when he would be stepping forth into the world to face the tough lessons of life without my constant supervision and my protective shelter.