The Speed of Dark

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.

When you’re stuck with a situation that you know from experience is going to cause a family member difficulty–whether it’s a inaccessible location for a family member who’s wheelchair-bound, or a social situation guaranteed to send your autistic kid into total meltdown, you have basically three choices.

You can avoid the situation–just don’t go there, just don’t put your child into a situation he can’t handle, and take whatever heat comes to you as as a result.  Avoidance does work, and is often the best solution when nothing can be done to change the situation, and it’s far outside the parameters your family member can handle.   Great-uncle Jim cannot walk, and is too heavy to carry.  Your child cannot, at present, handle crowds and noise.

You can attack the situation–insist that accommodations be made for your family member.   If the accommodation is within the ability of the people you’re putting the demand on–if there is an elevator for Great-uncle Jim, large enough for his wheelchair–sometimes this is the way to go.  But often it doesn’t work on the spot because no one anticipated the need–and the resources aren’t there at the moment.   Twenty-five excited five-year-old children at a  birthday party are not going to be quiet so your child who can’t handle noise isn’t bothered.

You can manage the situation with preparation–preparation on both ends of the stick.    Parents of an autistic child know exactly what will give him/her trouble–and can think their way through possible situations ahead of time.   Don’t go to Cousins Bob & Mary–they’re very touchy-feelie and insist on tousling hair, pinching cheeks, and hugging every child who comes through the door, while your kid cannot stand to be touched by strangers.   That formal affair, at which he’ll be expected to listen to interminable boring adult-speak and not fidget, your little wiggler that can’t sit still or be quiet for one minute?  Avoid that one, too.    But a quiet family party at Aunt Doris’s house–familiar, a place he likes to go–may work if you give him plenty of warning that there will be other people at the party, rehearse the rules (whatever your rules are for party food, etc.)  and let Aunt Doris know that you will remove your kid from a situation he can’t handle if he starts to have a meltdown.

It’s not fair to anyone–the child or the bystanders–when the child is put in a situation where a meltdown is inevitable.   Autistic kids don’t enjoy meltdowns–they’re in distress–and embarrassed that they are once more the goat of the lamb flock, the designated Problem.   A quick, polite, removal from the intolerable situation before the full meltdown occurs has many benefits for the child, the parents, and the bystanders.

Rehearsing potential trigger situations and ways the child can build tolerance really does work–faster and easier with some than with others–and is always worth trying.   It’s time-consuming, but it pays off when the child who threw a fit in a first restaurant visit because he didn’t know how to hold a stemmed glass and was afraid he might break it (not something he could explain)  practices at home and–next time–has no problems.  Practicing how to handle an unwanted food on the plate or in the sandwich–politely but with respect for the child’s preferences–is a very practical social skill.   “Excuse me–I ordered this with no cheese and it has cheese” is preferable to a scream and food on the floor.   (The nonverbal child can also learn more effective ways to communicate.)

Families with a member (or more) on the spectrum know how tricky holidays can be.  Holidays are not, by definition, the same as other days–and anyone who finds a change in schedule or surroundings stressful will  find holidays stressful on all counts.

The winter holiday season can be the worst–kids are out of school longer, stores are more crowded and noisier and full of sensory-overload inputs–smells, sights, sounds.  Families are expected to gather, including those parts of the family that have not yet come to terms with the reality of Autism-spectrum conditions.   “Why don’t you just make him/her–” eat that food/play with that cousin/talk/behave properly/be quiet….the demands can be harsh at the very time when other  people are (apparently) relaxing and having a good time.

Solutions?   As many as there are creative parents to devise them.  For some, avoiding those who can’t adapt and accept…for others, limiting exposure to them.    Creating a plan ahead of time helps–makes limits clear even to those who will transgress them (“Remember, I said that if you and Dad kept criticizing Joey, we would leave early.   We love you, but we also love our son.”)   Opting for fewer holiday-specific activities helps in some cases (if you have a son with absolute pitch and a love of music, do not take him to a community carol event in which many people will sing off-key until you’re sure he has the social skills not to say so right out loud, right there.)

Evading trouble is not being a wimp–it’s good planning.  Life on the spectrum offers plenty of challenges without walking into a minefield intentionally.

Many people have commented on the amount–and kind–of music in the book.   Lou (the protagonist) listens to music, hears/feels music in his mind even when not outwardly listening to music, and has distinct preferences for which pieces go with what tasks.

When our son was very young, it was clear that he responded emotionally to music, and I often used music to help him stabilize a good mood or manage a bad one.    One particular Etude of Chopin’s could be counted on to calm him; several pieces brought delighted laughter.

Since my husband and I both like classical music, and have sung in church choirs for years, the musical environment was almost exclusively classical–a wide range of periods–with some additional vocal bits aimed at children.

Our son showed an early preference for complicated music as well as responding to the emotional tones.  He wore out cassette tapes of favorites (including some Russian opera, a Bach cantata, a tape of Bach organ music) and now enjoys going to concerts if it’s music he likes.   We knew he had good pitch sense, but did not realize until a friend was tuning her harp with one of those electonic tuning forks that he has absolute pitch…she turned it on and set a tone (without him seeing it) and he said “That’s a D!” in a surprised voice.

I thought of that tonight on the way home from the dress rehearsal for a MESSIAH performance…there’s no sing-along MESSIAH in our area this year, but I’m singing in the chorus for a symphony performance and he and my husband will come.

Is music important to all autistic persons?   I have no idea.   But I know it’s important to more than one because I’ve met several who use music to regulate and manage emotional state, to aid concentration, and so on…just as I do.

This blog begins a discussion of The Speed of Dark and other issues related to the social and political implications of the neuro-typical/neuro-non-typical interface.

In future, I expect to be writing another book–this one non-fiction–which may help families and friends of persons with autism-spectrum neurology find happier ways to relate to one another.