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Posts Tagged Autism

A Special Morning at the McDonald’s Playplace

Jul 6

Posted by Matt Wigdahl in Family | No Comments

On our last day of our 4th of July staycation, the whole extended family went out to McDonald’s for breakfast.  We chose this for two reasons:

  1. We’d eaten all the eggs and didn’t have anything prepared for that morning, and
  2. It had been raining constantly for the last 24 hours and we wanted to get out of the house and go somewhere the kids could play.

So we ended up at Mickey D’s.  We deliberately chose the one nearby that doesn’t have video games, so we wouldn’t have to constantly chase the kids away from them.

When we got there, there was only one other family there.  A deaf man was there with two cute little toddler girls.  We couldn’t tell whether they were hearing or not; they just signed to communicate with their dad.  Over the course of breakfast, several other families arrived as well.  Towards the end of the meal, Thomas was walking around with a little Hispanic girl that either couldn’t or didn’t speak, and who looked slightly dysmorphic.  She was hugging him with a huge smile on her face, and wanting to hold hands as they went around the play area.

It was fairly obvious that she was special-needs of some sort; after Thomas and the girl played together for longer, her mother came over and told us how wonderful she thought Thomas was, as he was “the only child that was ever nice to her”.  Even allowing for a bit of maternal exaggeration, we were extremely proud of Thomas for his kindness and tolerance for being hugged and fussed over, even though it was obviously a bit embarrassing for him.

Shortly before we left, another young boy came in with his parent or caregiver.  He was an African-American boy who looked to be about Katherine’s age, and he was also either mostly or completely nonverbal.  He bounced a lot and hooted, and was approximating some sign language.  He had the hugest grin on his face the whole time; it was obvious that he loved being in the Playplace and was having a great time!

So, counting Katherine for our family, there was exactly one couple there who did not have a special-needs child at the Playplace that morning — Robin’s sister and brother-in-law Polly and Rick.

I think before we had Katherine and learned to understand and deal with her autism I would have been really freaked out with that many special-needs kids around.  But given where we’re at and what I’ve learned over the past few years, I just enjoyed the fact that everyone was playing together really nicely and having a great time, whether or not they had any disabilities or differences.

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Flash Photography

Jun 29

Posted by Matt Wigdahl in Family | No Comments

We recently picked up a new toy, pictured at right.  When Robin got her new phone, with the built-in flash video camera feature, we found ourselves taking quite a bit more video.  It’s very convenient to just pull it out and start filming, and it’s very easy to get the resultant video out into a form where you can do something with it.

Robin has also wanted for some time to do some video therapy for Katherine.  She learns very well based on what she sees on video, so Robin wanted to get the therapists and our family on an instructional video they could use to do some of this type of teaching.  If we had gone with our original tape-based camera we’d be sunk; it would be very difficult to get the video off the tape, convert it, and get it edited.

Enter the new Handycam.  We knew we wanted a flash-based camera (no tapes or mini-DVDs), and since we already had what amounts to a flip camera built into Robin’s phone, we figured we go for something with good optics and image stabilization.  We are extremely happy with the new camera.  It’s very light, very easy to work with, holds charge for a long time, and takes great-looking video.  We’ve probably taken more video in the week we’ve had this camera than we used to take in a year with the old one, and it’s incredibly easy to get at the video.

There’s no way we’d ever go back to a tape-based camera — once you use a camera that stores directly to RAM and links via USB to your computer, you’ll never look back!

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Close Dog

Mar 3

Posted by Matt Wigdahl in Family, Humor | No Comments

I’ve already written about Katherine’s reaction to having her four lower teeth extracted (“I want glue teeth“).  Lately she’s been a bit more OCD than usual — it comes and goes, but at the moment she really wants cupboard doors closed and pots centered on their trivets, etc.

Robin was privileged to see the newest manifestation of this yesterday.  Katherine was in the office with one of her teachers, working on programs, while Robin was working on the computer.  Also, Aurora (Rora), our female Sheltie, was in the office as well.  And she was panting — likely due to the fact that with all the floor lamps on in that room as well as the computers it turns into a reasonable facsimile of an Easy Bake oven.

This canine behavior, though, was apparently unacceptable to Katherine, so she expressed her objections forcefully:  “Close dog!”  “I want close dog!”  “Yes close dog!”

I’m not sure whether Robin took the dog out of the room or if Rora just settled down and stopped panting, but apparently the problem was solved without the use of duct tape, so all was once again well.

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Baby Eat Ham

Jan 18

Posted by Matt Wigdahl in Family, Humor | 2 Comments

Katherine has been doing very well verbally lately since Christmas break.  Whether the cause is the reduction in stress from not having school for three weeks or just the increased time at home with people who (mostly) understand her, she is doing substantially more spontaneous commenting and complex requesting.  Rather than just fall back on her stock “I want help” phrase, which can be maddening when she won’t specify what it is that she wants, she’s now using complex and sometimes synthetic terms for things she wants.

For example, the Baby Einstein Meet the Orchestra movie for a long time was “white baby movie”, which is a good description but doesn’t narrow it down from the other Baby Einstein videos, which also come in white cases.  Just recently she further specified it as “orchestra movie” which is much more clear to us.

She also got a new Littlest Pet Shop playset for Christmas, and has been referring to it as “animal playground”, which is a description she’s definitely synthesized herself, since we just recently opened that toy up for her and I’m sure she hasn’t heard it before.  In addition to that, she’s also getting mad if Thomas tries to horn in on her new toys, which is pretty developmentally appropriate even if it does cause more friction between them at times.

Along with this increased verbosity, however, is coming some willfulness when it comes to diet.  She’s almost completely given up orange juice, and she’s balking at certain types of meat that she’s liked just fine in the not-so-distant past.  This last time it was ham.

We had a very nice little boneless ham that we were serving up for supper.  It was very tasty and tender, and Katherine ate the first bite just fine.  After that, however, the response every time we tried to get her to go for a piece was “no ham!”  We tried most of the usual incentives to get her to eat it, such as offering a chocolate chip cookie for dessert if she finished the ham, and then sweetening the deal with potato chips.  Usually that will work to get her started, but not this time.  Every gambit was met with “no ham!” and strong resistance.

Finally, after several rounds of this, Katherine took the fork and held it up to Robin’s lips and said “Mom eat ham!”  So Robin did.  This, of course, caused a light to go on in Katherine’s mind and she tried it again, only to be rebuffed.  Only one “get out of ham free” card per person.  So she turned to me, with “Dad eat ham!”  This was then followed with “Thomas eat ham!”, but that still left several pieces left on her plate.  The dogs would have volunteered to help, but they were disqualified on the grounds of inhumanity, so she got creative.  She scanned the room, and noticed that I was holding Jonathan.  She got a big smile on her face.

“Baby eat ham!”

Unfortunately, we had to make it clear that Jonathan doesn’t eat food yet, and so he was unable to help her dispose of the rest of her meat.  But it was certainly fun watching her use her brain and creativity to solve her “problem”.

We did, by the way, get her to eat the rest of the ham.  I was able to convince her that by coating it in Parmesan cheese, ordinary ham is transubstantiated into a foodstuff known as “cheese ham”, and this was acceptable to her where plain ham was not.  She ate the cheese ham, moved on, and that was the last of it.

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“Facilitated Communication” for Autism — Today’s Snake Oil

Jan 6

Posted by Matt Wigdahl in Family, Politics, Writing and Philosophy | 2 Comments

I’m not going to stomp on any parent of a child with autism seeking out therapies to try to improve their child’s quality of life and long term prognosis.  Robin and I are right there with you.  But how many more devoted parents of autistic children are going to have their lives ruined because of the unjustified belief in “Facilitated Communication”?

This story is typical of several that have come out over the past few years.  An autistic girl “says” through her facilitator that her father is sexually abusing her.  CPS is notified by well-meaning school administrators, and the parents’ lives are systematically destroyed.  The father is jailed, their autistic children are taken away and placed in foster care.  Jobs are lost, reputations are destroyed.  And in the end, when someone actually thinks to perform an actual scientific test to determine whether Facilitated Communication is reliable enough to let the girl testify at trial, the results are pure gibberish:

On Jan. 28 and 29, 2008, Judge Marc Barron held a hearing to determine the accuracy of facilitated communication so that it could be used when Aislinn testified in the coming hearings and her father’s trial. Barron ordered that Scarsella leave the room when Aislinn was asked a question. After the question had been posed, Scarsella could return and facilitate Aislinn’s answer on the keyboard.“Do you have a brother or a sister?” Aislinn was asked.

“3FE65,” she answered.

Could she clarify that answer?

“7BQJVWTTT7YI.”

“What color is your sweater?”

“JIBHJIH.”

Belief is a stubborn thing. There were plenty of signs that Aislinn’s supposed accusations against her father were never valid. In early interviews with police she was unable to name her dog or her grandmother, facts Scarsella didn’t know.

With Aislinn’s FC being the only evidence that abuse had occurred, the charges were dropped. On Feb. 22, 2008, after 80 days in jail, Julian Wendrow was released.

The police said they still feared for the children.

The police said they still feared for the children.

The police said they still feared for the children, yet there was no reliable evidence whatsoever that these accusations had even a shred of truth to them.

Of course this is a sad story.  It’s all too easy to put myself in the position of the father here.  I have an autistic daughter, whose verbal communication is very limited.  Should the school district decide that FC was something to try with Katherine, and some facilitator with an axe to grind decided to make up allegations, I could be lying sprawled out on a urine-covered concrete jail floor just like this man was.  Just like that.

But the real tragedy isn’t that this situation happened.  At least the truth came out, the father is released, and that family can start to work on dealing with the added burdens our wardens of society just heaped on their heads.

No, the real tragedy is that people still buy that FC works for communication with autistic children.  Despite the fact that in simple, blind trials FC has never been shown to work worth a damn, people still believe in it.  These tests are completely simple, folks.  Just like tests disproving ESP, just like they demonstrated above, all you need to do is to ensure the facilitator doesn’t have the knowledge that the autistic person does.  If they don’t know it, they can’t make something up, whether it’s consciously or via some sort of unconscious Ouija board effect.

Take the facilitator out of the room.  Show something to the subject.  Bring them back in and ask them to facilitate a description of the object.  That’s all it takes! If the questions are answered correctly, maybe there’s something to it.  But they aren’t ever answered correctly with autistic children in properly controlled circumstances.  The fact that a man was jailed and arraigned for raping his daughter on the basis of a communication modality that can’t pass this simple test is absolutely insane!

Famed debunker James Randi discusses FC here, specifically referring to the recent claims that a man that was paralyzed in a coma for 23 years was actually conscious the whole time.  He includes links pointing out the fraud, but I think my favorite quote from the article is this (emphasis mine):

My tests of autistic children at the University of Wisconsin-Madison clearly showed that FC was simply a tragic farce.  My findings were totally ignored. The full account of this matter will be discussed in detail in my next book, A Magician in the Laboratory.

They invited  him in to investigate the validity of using FC with autistic children, but when his results didn’t support the theories, they ignored him.

Wegner, Fuller, and Sparrow published a very interesting article tying FC to the “Clever Hans” effect, with a thorough (and damning) survey of scientific test results to date (the article was written in 2001):

The bright hope for FC was soon dimmed by research showing
that many facilitated responses originate with the facilitators themselves
(Felce, 1994; Jacobson, Mulick, & Schwartz, 1995). One
telling study delivered separate questions through headphones to
facilitators and clients, and the resulting answers were found to
match the questions given to the facilitators, not the clients
(Wheeler, Jacobson, Paglieri, & Schwartz, 1993). It turned out that
FC could not uncover facts unknown to the facilitator (Cabay,
1994; Siegel, 1995; Simpson & Myles, 1995). When clients were
given messages or shown objects with their facilitators absent, they
were not able to describe these items in subsequent FC (Crewes et
al., 1995; Hirshoren & Gregory, 1995; Klewe, 1993; Montee,
Miltenberger, & Wittrock, 1995; Regal, Rooney, & Wandas, 1994;
Szempruch & Jacobson, 1993). Although some proponents of FC
attest to its effectiveness even in the face of such evidence (e.g.,
Biklen & Cardinal, 1997), the overwhelming weight of research
indicates that FC consists largely of communication from the
facilitator (Twachtman-Cullen, 1998).

I don’t believe the facilitator in the case I described above acted with conscious malice.  I’m sure something was “facilitated” in the normal course of the daughter’s education that looked incriminating, and the “where there’s smoke there’s fire” effect took off from there.  Certainly the police still smell that smoke, even after it was proven there wasn’t any smoke in the first place.  It’s simply inexcusable that law enforcement personnel would accept what is effectively hearsay evidence without any determination as to the reliability of this communication.

People’s lives are in the balance, folks — people that already carry a heavier burden of duty and responsibility than you likely know.  Don’t let institutional stupidity and wishful thinking — heck, almost every cognitive fallacy in this list, really — drive these parents even further into the dirt.

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A Bit About Katherine

Aug 27

Posted by Matt Wigdahl in Family, Writing and Philosophy | No Comments

A2006 Dec Zoo KI’ve written quite a bit about Thomas in the past, but you haven’t heard me write much about my daughter Katherine, except in passing.  There’s a reason for that.  One of the main reasons I stopped writing this blog several years ago, in fact, was because Katherine was diagnosed with autism in March 2006. We did exhaustive research and learned that there were cases where early intervention seemed to lead to complete or near-complete recovery, and since this was a possibility, we decided we were going to try to keep her condition as close to the vest as we could, in view of her future privacy.  If Katherine was indeed able to overcome her disability, she shouldn’t have to live with a label the rest of her life.

We told few people outside the immediate family and the folks I see at work every day.  I felt I couldn’t write about what we were going through, and since for months, then years, we were focusing all our efforts on research and therapy, that meant I couldn’t really write about the bulk of what was fundamentally important in my life.  So I kept silent, waiting for her to close the developmental gap between her and her peers.

Well, that’s not going to happen.  I love my daughter dearly, and she has made wonderful progress through the diligent efforts of Robin and her Applied Behavioral Analysis team, but it has become obvious over the years that the particular issues Katherine has are not going to go away with time.

One of the problems with “autism” as a diagnostic category is that it is so vague and encompasses so many variations in condition that it tells you almost nothing to know that someone “has autism”.  It tells you nothing other than the basic fact that they have some degree of cognitive issues dealing with social behavior, communication, and sensory input, with other possible deficits tacked on.

Katherine’s autism is atypical in many ways.  She’s actually reasonably accessible socially; her eye contact is good, you can get and keep her attention fairly easily, she has very good physical coordination, and she’s interested in watching and imitating what peers and adults do to at least a moderate degree.  She’s not the life of the party, but she’s not a total wallflower either.  She has a charm all her own and she will melt your heart if you find a way to connect with her.

She’s turning six at the end of October, just starting Kindergarten this year.  She knows her alphabet, numbers to twenty, colors and shapes, and can read sight words and even sound out many basic three-letter words phonetically.  From a skills perspective she’s about where she needs to be for Kindergarten.  The problem is that she just can’t seem to take in more than about 3-4 spoken words at a time.  There is some sort of disconnect between her ears and the language centers in her brain that we don’t think we’ll be able to get around.

Since she doesn’t absorb many words at a time if you speak to her in normal sentences she misses most or all of it. So if we want to effectively communicate with her we need to use “Katherinese” — abbreviated, telegraphic sentences like “First store, then movie”.  As long as she has been taught the appropriate grammatical constructs — an ongoing process — she can understand this and generally responds well.  She’s very sweet-tempered and sanguine as long as she understands what is going on in her life, which is a great blessing.

We have evidence that her eyes are better connected to her language centers and hope to leverage that to increase her communication skill, but without the ability to follow normal conversation, Katherine will never fully blend in.  Spoken language affects pretty much everything in her life to some degree.  When she can’t understand, she can’t respond.  And even when she does understand, her verbal output is also limited, so making her wants and needs known can be very problematic for her.  She can’t express herself with language that she doesn’t know and it is very hard for her to learn language with so little of it getting into her brain in the first place.

Interestingly, like some people who stutter, music seems like an “out of band” channel for her.  She can memorize long songs and sing them on key, and we’ve experimented with seeing whether she can understand more words when they are sung to her than when they are spoken.  It does seem to work a bit better, but it’s not a drastic improvement.

So expect to see some more about what’s going on with Katherine, alongside the other updates on Thomas and Robin and Baby Boy to be Named Later.  Our little girl is not what we expected, and we’re still working as hard as we can to prepare her for her future life, but we’re proud of her — both of who she is and of what she’s accomplished so far — nevertheless.

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