The Speed of Dark

When an autistic child, on the first day in a special needs school, gets upset and crawls out a third floor window and won’t come in, you hope for someone like this Thai fireman.

Some points to consider:  the boy’s mother (not the teachers) knew that his favorite superhero was  Spiderman.   (When in doubt about what to do with an autistic child in some situation, ask the parents–they really do know more about that child than anyone else.)   Mr. Somchai, the fireman, had the costume and clearly didn’t worry about the possibility that some adults might find a fireman in a Spiderman costume a little…silly.

Sometimes, working with children with autism, we need to be willing to risk our dignity (one of the hardest things for adults to give up–we worked so hard to get it!)    But to make that contact–to make the social, human linkage work–it’s worth the risk.

In another venue someone asked if anyone else’s child on the autism spectrum hated to hear their mother sing.

My answer was yes: when our son was pre-verbal, he didn’t much like singing at all (with the exception of a lullaby I’d made up for him early on) but he did like music…until the 18 months when he didn’t.   For about two years I was choir director for a very small church’s very small choir, and I could not have him in the church while we rehearsed–he’d scream the whole time.

Once he began to talk (a process that took years to achieve) he complained about singing.  He liked music–he liked to have me play the piano, and began playing himself very early–but singing, especially in groups, seemed almost to hurt him.   (His early ability on the piano, combined with being nonverbal, made us consider if he might be a musical savant.  Not many preschoolers will start playing along with very complex difficult classical music.)

Though he gradually came to accept some vocal music, with a single (very good) singer,  things changed again for an 18 month period.   Suddenly (as in, within one week) he could not stand any music at all, even music he had enjoyed before.   Music in the mall, music in a restaurant, music on the radio or TV–none of it.   His language  at this stage was what is called “right-brain”–the way people speak who have had damage to their left-brain auditory processor,  the main language center (Broca’s area.)  Stilted and downright peculiar syntax, little emotional expression, etc.    And music is processed (for most people) mostly in the right-brain auditory processor.  Were the two interfering when both words and music came in together?

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This was originally a post over at my LiveJournal, but generated so many comments that I thought it might be of even more interest here.  I copied & pasted, which seems to have preserved the LJ font size (and I haven’t a clue what to do about it…or why, when I posted this and then looked at it, only one paragraph is “that” size…)  Over there (for anyone who wants to go look and read the comments) the title is Language and Autism.   I have invited the people commenting there to consider coming here and continuing the discussion.

Our son did not learn to talk early, and for years after he said his first word (many years) his syntax was odd enough to make his speech barely intelligible to most people.   Though it has improved a lot, he still gets “tangled’ sometimes, and often “mazes” (repeating parts of a sentence several times.)   It’s clear to me that he’s constructing the sentences in chunks, and has to repeat every chunk to get the whole thing out at the end (like those songs where you have to repeat a key part of previous verses–Old MacDonald’s Farm, for instance.)

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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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Dates and other details about my appearances this year, including links to the institutions,  are here.   I’ll be posting any additional news about these on the same site.

However,  here’s the outline:

March 31, 2009.  Teleconference with Howard Community College in Maryland.

August 18, 2009.   Visiting Clemson University,  Clemson, SC.

September 21, 2009.  Visiting Schreiner University,  Kerrville, TX

Schreiner University in Kerrville, Texas invited me to come speak to them in September.  No firm date yet.

Reminder that I’ll be doing a teleconference appearance at Howard Community College in Maryland because I couldn’t make that trip (and that turned out to be lucky, as the pneumonia I had upset everything and I’m even more in crunch mode now.)   That’s March 31.   I did the equipment compatibility test yesterday.  I don’t have the right stuff at home, so Central Texas College is handling things on this end.   They have a large telecommunications program and run the local PBS station from the campus.

There’s another probable appearance in August, but I have not heard back from the organizers that it’s “for sure” yet.

It’s understandable that parents of children with autism, like parents of children with any developmental problem, want to know what caused  it–and often want to know who’s to blame.    Unfortunately, in the case of autism and childhood immunizations, a combination of greed, bad logic, and outright lying by some unscrupulous  “investigators” has created a situation in which innocent parents have come to believe that evil vaccines caused their children’s autism.

It’s not true.   Yet, like many errors, it’s become ingrained in some peoples’ minds–largely because of three factors.  First, it gives parents someone to blame and gets them off the hook with relatives.   If it’s caused by vaccines, they don’t  have to consider the known causes, including genetics.  Second, it makes a huge profit for those who promote the vaccine hypothesis and offer goods and services to ameliorate the supposed damage done by the vaccine.  And third, there’s the profit motive: if autism were caused by vaccines, then suing vaccine manufacturers (and now, the government because it’s taken over the liability) could make a lot of money for lawyers and parents alike.

To understand why the vaccine hypothesis is wrong requires some history as well as good science.

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Uneven development across various cognitive domains is more common than most people realize, but people with autism usually show extreme unevenness.    Anyone working with autistic children needs to be aware of these extremes–and mapping developmental levels in each domain can help target interventions to that particular child’s actual needs.    These interventions should not be aimed at raising the child’s gaps to equal his talents–or stifling the talents to the level of the gaps.  Instead, the goal should be to scaffold progress in each domain from where the child actually is, at the best rate that the child can manage in each.

I learned this first as a tutor, coming in to rescue a child who had started failing in a subject or had some other problem.   To do my job, I needed to find out what the child knew, what the child thought he/she knew, and what had gone wrong–as fast as possible and while building a working relationship with that child.

How do you approach this problem?   It starts with careful, precise observation of the child’s current behaviors in each domain.  Big sheets of graph paper help both the mapping and charting progress.   An ordinary “baby book” that gives general information about normal development allows parents to do at least a rough approximation themselves.

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Thirty years ago,  children with disabilities were not guaranteed education in public schools.    My state had residential schools in the state capital for deaf children and for blind children, but nothing for children who had other disabilities.     I remember the mother of a childhood friend fighting with the school board so her daughter–with severe hearing impairment–could attend regular classes.   (Her daughter is now a professor of chemistry.)    If they weren’t institutionalized,  disabled children were home-schooled, usually by tutors, like Helen Keller.

But now that federal law requires schools to educate all children, why would a parent choose homeschooling?  And why are the advantages–and challenges–of doing so?    Here are some things to think about, from someone who did it.

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My agent has reported two “spikes” in sales of The Speed of Dark in the past month–so of course I’m happy about that.   The most recent was 92 copies in Portland, Maine.  WOW!

For anyone who’s contemplating using this book in a book club, class, or other reading group, please be aware that my publisher, Del Rey, may  have some special materials available, and I will be happy to do an email interview for your group.

Travel time is limited, but technology’s getting better every day–now that I have broadband, I might even be able to manage an online chat session.

(And now, back to the Happy Dance of  “People are reading my book, my book!  People are reading my book!!!”)