I know, sorry, that’s a fairly confusing title for this post. But what it boils down to is my daughter Carrie’s routine. She was diagnosed very early, and I mean, “unheard of” early. She was only 13mos old when we officially knew there was some kind of issue at work, and by 15mos had already started Early Intervention and were working on a formal diagnosis of autism. One of the things I knew would be the kiss of death for any kind of “normal” future for her would be if we let Carrie live within some kind of strict routine.
It’s weird, I got ripped apart by some of the reviewers of my first book, Autism By Hand, for this very topic. And truly, I do understand that the need for routine in people with autism can stem from a complete fear of what’s going to happen next. No, I don’t want my daughter to live in the grip of absolute terror (as some people suggested in the reviews), but at the same time, I’m not doing her any favors if I let her believe that this routine will remain in place for the rest of her life.
Although I hate the comparisons to Rain Man, think back to the problems he faced outside his institution. It’s Thursday, it’s fish stick day, I have to have six fish sticks which I eat while facing north and watching television. Who can live like that? What kind of life is Carrie going to have if I let her believe that it’s realistic? There’s a reason Raymond was in an institution…it’s the only place where routines like that are even remotely possible. And I fully believe that letting Carrie slip into the comfort of a rigid routine would mean making her destined for life in some kind of facility when she’s older.
Fortunately, it didn’t take too many years for Carrie to not only NEED a strict routine, but also to even be excited about some of the new possibilities each day presented. Now, she eagerly asks what we’re going to do today. Sure, there might still be some level of fear behind her question, but at least she can put on the persona of excitement about getting to do something different.
One place her lack of routine has come in very handy is her diet. She is on the GFCF diet for autism, so of course, her list of acceptable foods is very limited. And while this is another aspect that reviewers wanted to crucify me for, we never let Carrie have food routines either. She has to at least try new foods. Sometimes that new food is cotton candy, other times it’s a vegetable. As a result of our views on food routines, (and as a non-fish eater myself) it’s mind-boggling that Carrie now LOVES salmon, catfish, shrimp, and crab legs, but screams if you come near her with a banana. Last night’s dinner of steak tips, carrots, and potatoes went really well until it was time to eat four bites of the potato. Seriously? You can eat steak tips in marinade, but not potato?! But she ate her four bites, declared that she still didn’t like it, and happily went off in search of her dessert.
By preparing her now for this kind of flexibility, we’re helping her to have a fuller life and one that will be less upsetting in the future. Sure, the day will come when she’s an adult and says, “I don’t ever have to eat broccoli again,” but now the day will never come when she’s sitting in a hospital-style cafeteria for her meals because she simply can’t adjust to not eating fish sticks every Thursday.