The Speed of Dark

A word of hope:  the same kid who, at six, could still not stand the noise and confusion of a typical birthday party, may be able to attend the holiday party at his job and later gleefully announce “We had Chinese food for free!”

There were a lot of years in between and a lot of work, but gradually, step by step, tolerance for noise and confusion and strangers led to where we are now:  he likes parties.  He likes parties here, he likes parties at friends’ houses, he likes parties at restaurants…parties with and without music (including music way too loud for me!)

True, he needed assistance in buying a present for the office party (parent conference with supervisor over what would be best), and some assistance in obtaining/wrapping/presenting it, but he did it, and he’s happy about it, and so are we.

I could grieve about all the parties he missed when he was little…but it seems more useful to be glad that he now thoroughly enjoys them.   The long-term goal trumps short-term disappointments.

Humans all find routines comforting to some degree.    Infants and small children commonly like routines–they want the same food at the same time every day; they want to know what’s next and how long it will last.   Older children and adults build their own routines–it’s easy to get into a rut, walking to school by the same route, driving to work at the same time every day,  meeting friends at the same place on the same day every week for dinner or bridge or a run or a hike.   We put on our clothes in a logical order (instead of putting on jeans, then having to take them off to put on underwear.)   Life without routine is disorganized, and one of the things “SuperNanny” and various “organize your life” experts recommend is setting up routines to ensure that everything that needs to be done gets done as efficiently as possible.   So “routine” by itself is not bad.

Persons with autism are often described as having excessively rigid routines–truer of some autists than others, but the tendency is certainly there.    Children with autism do not like change in a familiar unless they initiate it (and they rarely do so).   The appearance of a substitute teacher…a change in the school schedule…the changes that come with school vacations…a parent taking a different route through a supermarket…someone in the family coming home late from work…any of these can trigger extreme distress.   This need for consistent routines is usually seen as a problem.

But it can also be a strength.   An autistic child readily learns a routine and will usually then stick to it.  First A, then B, then C…no steps will be skipped, and they’ll all be in the right order.   Moreover, if the family can set up useful routines and subroutines to use in emergency/change situations, the familiar routines will  help the child cope with change.   A familiar routine is comforting, calming, to everyone–all of us have some routine that helps us calm down.   Instead of fighting the child’s need to control his/her environment by running through a familiar routine,  use it–understand what that routine accomplishes.  Create routines that accomplish other long-term goals.

Autistic individuals have differences in sensory processing.   They may have perfect vision according to an eye chart…perfect hearing when tested with pure tone audiometry–and yet be unable to “see” and “hear” what others see and hear.   In addition, autistic individuals react to environmental inputs others tend to ignore, and do not react to those others find important.  Thus the autistic child’s near-universal intolerance of tags in the back of shirts, seams in socks,  “floaters” in orange juice, and inability to judge the speed of oncoming traffic when crossing the street.

One of my textbooks on autism dismissed the idea that sensory processing problems could be central to autism because the writer saw no way that these differences could result in the more obvious social and language deficits.    That person clearly had no experience in programming computers, where “garbage in, garbage out” is a common mantra.

If a person is not getting the same sensory information in, they will not experience the world the same–and will not behave the same.   The color blind person does not see that the traffic light is red–and does not stop unless its position warns him.   Normal social interaction rests on the senses–on our ability to extract information from our senses, assign meaning to it, and respond in a way our society approves.

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Famiies with an autistic member are used to the opposite–criticism, ridicule, denial that the individual has a “real” problem, scorn, etc. We often don’t get kindness where we most expect and hope for it–from family, acquaintances, members of a faith community. But we are also occasionally touched with unexpected kindness by strangers, and this seems like a good time to mention it…and learn how to be kinder ourselves.

In a hotel in New Zealand, about ten years ago, our son was sick–had, we discovered, a serious ear problem that required surgery before we could leave (we had to change airline reservations and plans, as well as find a surgeon.) Everyone–the hotel staff, the surgeon, the surgeon’s staff–was patient with us, gentle with our autistic son.

Once when I was buying shoes for our son–at an age where he was very stressed by stores and nonverbal and I was trying very hard to prevent a meltdown while still getting the shoes–the woman who brought out the shoes said ‘You do so well with him–” and I nearly burst into tears. (Mothers of autistic preschoolers don’t get many compliments.)

There was the shy construction worker who said “Don’t worry–I have a co-worker who can’t talk and he’s one of the best, and so kind–your son will do fine.”

The woman at church (when we finally found an autism-friendly church) who called me up to tell me how much she enjoyed having our son in the congregation. (Burst of happy fireworks on that one!)

Every one of the incidents I remember, though not always the faces and names (i have a face-recognition problem that’s only gotten worse with age.) Little sparks of light down the years, wonderful little bursts of hope and joy that made going on seem possible even in the most difficult periods.