The Speed of Dark

M-‘s second week of college was complicated by other medical problems in the family, but he is still happy to be going and engaged in his classes.   He is taking notes in class, and can usually give a moderately coherent report of the class.   He is working diligently on his homework.  He survived his first in-class quiz (pre-algebra) and made a passing grade (78/100.)   That’s higher than I made on my first calculus quiz and higher than he made on his assessment test before entry, so we’re very pleased.   Read the rest of this entry »

If you can’t drive, and probably won’t ever drive, then learning to use public transportation is a necessity.   We’ve worked on this since our son was quite young, and by the time we faced the “how to get him to his classes in the city” he had been on buses, trains, subways, and airplanes (oh, and ferry boats) so we did not expect much difficulty with this. Read the rest of this entry »

One of the things people sometimes complain of with persons on the spectrum is their “rigidity” and their strict interpretation of,  and adherence to, rules.   Rules they’ve internalized, that is.  But the flip side of “rigidity” is “reliability”–a trait prized by employers.    I was strongly reminded of that today, when our son left me an email (at 7:30 am, that I didn’t see until much later) that he was going out with the man who takes him to interview for other jobs–and I knew he needed to be back in the afternoon to work a shift at his current job.

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This evening our son came over to the house around 7 pm.    I was polishing silver.  He said “Hi” and I said “Hi” and he wandered around in a vague sort of way.  I asked if he’d eaten supper yet and he said yes, he’d had spaghetti and meatballs.  I finished the spoons I was working on, put them away, and went back to my study to get some work done until Richard came in from the land, since M- hadn’t said he wanted anything and he often uses Richard’s computer (it has broadband.  His house doesn’t.)

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When our son was just beginning to be verbal, and able to say words with a consonant on each end,  one of his therapists suggested we introduce him to rhyming words as a way of training his ear and his speech…extending the consonants he could say,  and so on.

This certainly helped, and he began to try out combinations himself (which was good) except for one little problem.   If you start rhyming one-syllable words in English…starting from harmless familiar words like for instance “bit” and “pit” and “sit”….you end up with words that are considered inappropriate for small children to say.   The child may never have heard those words, the ones that rhyme with “sit” and “bird” and so on, and have no idea what they mean…but if your larger-than-average, older-than-average-when-learning-to-talk autistic child says them,  social disapproval rains down all over the scene.   And autistic kids don’t need any more social disapproval than they get already.

So the day came when our bright-eyed little guy very proudly (and it was an accomplishment–he had just managed the /sh/ sound the week before)  went through his “–it” words and added “sh*t.”

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The basis of a healthy social contract between individuals is reciprocity.  At root, individuals bond–as family members, friends, lovers–because they give each other pleasure.  The more pleasure–and the more equal the sharing–the closer the bond.

The game starts at birth.   Adults must start it, as they are the more competent partner (or should be.)  Given the average infant, the average advice on child-rearing results in a baby who soon realizes that people make him feel safe and comfortable and happy.  Within weeks, the baby is responding to this with signs of happiness as well as notices of “something’s wrong, fix it!”    Caring adults are then rewarded by the baby’s joy.  They like the smiles, the coos, the wiggly arms and legs, all the signals that the baby is happy and likes having them around.

Adults then intensify their attempts to get these happy reactions from the baby, repeating the ones that work–because they’re enjoying the baby just as the baby is enjoying them.    Before the average baby is a year old, he knows that adults take pleasure in him–some of the time–and can tell when he’s pleased an adult.   Average babies begin consciously seeking to please their adults at least some of the time–more if the adults are also playing fair, not demanding more than the baby can give.  (Adults have longer attention spans, and often want babies to interact longer than the baby can.)

This is the basis of healthy social motivation.

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Whether someone’s autistic or not, being rigid and inflexible make life difficult for everyone else, and a constant stress for the rigid person…because life just does not cooperate.

Helping a child–or adult–or oneself–cope with inflexibility brings lifelong benefits.    Each individual is different, some more rigid than others, but starting early to build in small variations (not chaos)  into routines is one way to encourage flexibility.    Different methods may work for different people, but the unifying idea is to demonstrate that something new/different/nonroutine can be fun.

“Demonstration” is the operative word, because if children with a tendency to rigidity are around rigid adults–especially if routines and schedules and the One Right Way to Do Things is always around them, where would they learn flexibility?   They need to see other people making choices–choosing to change, to try things, and then enjoying it.   So parents need to check their own behavior.   Are they themselves rigid?    If not, do they talk about and make visible the choice-making process?

Giving choices early on allows an individual some autonomy and requires initiative (to make the choice) even if it’s the same choice.   Try giving three choices: A, B, and “other”.    We found that quite often we’d guessed wrong–our guesses (A and B) did not encompass our son’s first choice and made him seem more rigid than he was.  (Of course, then you have to figure out what “other” might be, and that does take time.  But the goal is worth it.)

As mentioned before, familiar routines are comforting, and also make order out of life’s chaos–there’s nothing wrong with familiar routines.  But to build flexibility, try having regular variation within the routine.  Have two routes to the grocery store, and (even if sure the child can’t understand yet) explain why you choose one over another.   When chores can be done a different way, or in a different order (some obviously can’t)  use the other methods.   Do the colored wash first one day, and the white wash first another day….and don’t just do it that way, point it out.

This may provoke concern–definitely will, with some–but by introducing small variations in routine activities, within the shelter of organizing routines, a little flexibility becomes routine as well…and thus less stressful.

Expanding this requires flexible thinking in the person doing the planning, as well as sensitivity to t he tolerance limits of the rigid person–and that includes trying to expand your own flexibility.    When someone is tired, sick, hungry, thirsty, too hot or too cold–this is not the time to push for more flexibility in other things.

It’s also important not to overvalue flexibility–the person who has no stability in their desires, who is suggestible and can be talked/pushed/lured into anything–or who can’t make decisions–is not really better off than the person who can’t stand it if one sock is not as white as the other.   They will both have problems in life–just different ones.     So while moderate flexibility allows for easier coping with life’s crises and smoother interaction with others,  none of us is required to suit someone else’s wishes and convenience all the time.

More on flexibility another time–this is not being a routine day at our household and I need to fix supper now, not half an hour from now.

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.

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.