We cling to it like a lifeboat – “The Routine” – I know a lot of you live the same way. We do things the same way every day. Transitions stay the same – since autism prevents Lila from making sense of the world any other way, those transitions are extremely important to her. What we do, time of day, the songs we sing – it all matters a great deal more than most typical families can understand.
What never ceases to amaze me is how fragile the routine actually is… this has been evidenced through our past experiences, like our bath time troubles. Lila genuinely loves bath time, always has! She loves to stay in there and play for at least 45 minutes on most days. However, a couple of times before (and now once again)…. something negative happens. This particular time she had to let go of “Monkey Blanket” to get into the bath. She was unable to put herself back together, and bath time turned into a full-on sensory meltdown. Instead of that being the anomaly, it instead became the new normal – going on about 6 days now.
Our therapist Janet explained it like this, and I found this metaphor extremely helpful:
“To me (from what I have gathered), it seems like for people with ASD, events run on thousands of tiny movie reels, where each action in real life should connect smoothly and predictably to the next, like it did last time. If not, it’s just too much. If a new unpleasant thing happens, it’s like the bad spot gets “relived” and rewritten at that exact moment when it occurred in the sequence. Then the anticipation of it coming up in the sequence the next time the reel starts infects the whole track back up to beginning. ”
So that’s where we’re at now. The “reel” has been infected all the way back up to the beginning. Now, the sound of the water running sends her anxiety through the roof. Janet also recommended that “the more visual cues are that the old reel is intact (or how a person can handle a glitch), the better it goes”. We will be working on this all week, and formulating ideas and pictures to start using visual picture sequences for other routines as well.
Wish us luck – we will let you know how it goes!