Taking the Scenic Route

Fee wrote about this a few days ago and I started blogging on her comments and decided I should just blog it on my blog instead.

Can we get a big, collective “DUH?!?” from crowd. This is what I have been trying to say to people for a long time, although they usually look at me like I am crazy and dellusional.

First, the article, then I will make some more comments.

http://www.telegraph.co.uk/news/newstopics/politics/health/2976839/Autism-is-caused-by-a-supercharged-mind-scientists-claim.html

Autism is caused by a ’supercharged’ mind, scientists claim
Children who develop autism have “supercharged” brains that are so clever and sensitive that they make everyday experiences utterly overwhelming, new research claims.

By Richard Alleyne
Last Updated: 10:32PM BST 17 Sep 2008

According to a theory developed by Swiss neuroscientists, the condition is not caused by a brain deficiency but by a system overload which causes the world to seem frightening and overly intense.

Husband and wife team Kamila and Henry Markram of the Swiss Federal Institute of Technology in Lausanne, believe the idea could explain the erratic nature of the condition.

“Our hypothesis is that autistic people perceive, feel and remember too much,” Kamila Markram told the New Scientist.

Faced with this “intense world” , autistic infants withdraw, with serious consequences for their social and linguistic development, she added.

Repetitive behaviours such as rocking and head-banging, meanwhile, can be seen as an attempt to bring order and predictability to a “blaring world”.

Most of the theories surrounding autism involve the idea of an underperforming brain but the Markrams believe the opposite is true with the brain being “supercharged”.

Their research, which included studying their own son who is borderline autistic, is backed up by one of the most replicated findings in autism which is abnormal brain growth.

At birth the brains of autistic children are small or normal sized, but grow unusually quickly.

By age two to three, when symptoms of autism occur, their brain volume is roughly 10 per cent larger than average.

The Markrams believe that autistic children suffer from “hypermemory” which lock them into certain compulsive routines and develop their savant skills.

“They build very strong memories,” said Mrs Markram. “So strong that you establish a routine that you can’t undo: you are stuck on a track.”

Their theory chimes with the depiction of an autistic savant in the film Rain Man, starring Dustin Hoffman and Tom Cruise.

It also rings true with anecdotal evidence from autistic people.

“When I was younger, the school bell was like a dentist’s drill hitting a nerve,” said Temple Grandin, an animal scientist at Colorado State University in Fort Collins well known for being autistic.

“I think it’s difficult for people to imagine a reality where sounds hurt your ears and a fluorescent light is like a discotheque.”

Although I do conceed that this is probably not true for all autistic people, it certainly holds true to what I know about Zane. Instead of “not feeling emotion” (an autistic stereotype), he seems to over-feel them. He is often the embodiement of the emotional charge of the room. I also think that a big problem with eye contact and reading people’s emotions is that he is feeling how they actually feel, and it often conflicts with the social mask people are wearing and it’s confusing.

Zane is also hyperlexic and taught himself to read around two. By Zora’s age, he had been writing the alphabet for a while too. (she isn’t even close to writing the alphabet out). He also knew how to get around anyplace we had ever been before…inside stores, driving around, and made it clear from the backseat when he was unhappy with the route we were taking or if we missed the turn, even as a young toddler.

I know he is brilliant. It actually interferes with ST and OT if the person watching isn’t really sharp. This is why I like his current STs and the OT that I loved (and hope to have the car and the money to go back to soon.) This is also why I like the Clinical Educator so much at WSU… she is able to pick up on when he is just playing with the ST student and when he is actually not getting something…a very subtle thing, and you have to be able to see that he is smart to even be looking for it. I am so glad the next generation of STs are being taught to watch for this so well. It is really neat to see the creative problem solving, but can make planning for an activity to target a specific skill a lot of work. I think that is one of the biggest problems with people trying to educate Autistic kids, in the classroom or in specialized settings like ST and OT; you have to be really smart and good at what you are doing to be able to read these kids and know when they are BSing you. It is exhausting and intense at times. In a lot of classrooms, there are so many other things going on it makes it a lot harder to do this well. This is why it is so difficult to find good SpEd programs and why that is usually the main topic of conversation when two parents meet up.

Honestly, this is a large part of why we were so delayed in getting a diagnosis. I read what “autism” is supposed to be and, although the actions were the same, I interpreted the cause of them being almost exactly opposite of what they were saying and it took a while for me to accept that it was the actions that defined the diagnosis, not the root cause.

I could go on and on with antidotal stories that support this theory, but Zora is making it hard to type (and think), and I need to get back to real life.

Oh…and on a side note…ds’ head size has always been a little large, just like his dad’s. Finding hats that fit, especially as a baby when the sizes are more dramatically different, was always a challenge.

Saturday evening we went to see dre.dance perform “beyond words”, a piece about autism. It was a powerful evening.

The dance told the story of an autistic boy growing up and the experience of autism. It took all of the everyday stims and movements and rhythms and made a beautiful, powerful piece. It was really cool. So much of the focus on autism in the media is so negative and to have somebody show that there is also beauty is really refreshing.

The directors didn’t really have a librato because they wanted you to intrepet the dance on your own terms instead of saying what it was, but I will give my interpretation of the story line:

It starts with the boy, center stage, in a hot spot. He is lining things up (in an abstract dance). The “parents” get upset, try to get him do different things (dance with them), he doesn’t. They argue and are upset. This scene had me doing the ugly cry and trying not to disturb those around me the first time I saw it at the Dance Festival, and I still cried this time…as a parent, it really got to a deep dark place. In the next scene the stage is filled with people and the boy is moved around, pushed, pulled and lifted by the large cast in an attempt to try and get him to dance with them, (which I interpreted as a flurry of interventions you seek after a diagnosis) and at the end, left to his own devices, he is still autistic, still lining things up.

There is a really neat scene in here where the boy and a man mirror each other’s movements and stims, and I interpreted that as the transition of the boy to the man (growing up).

The middle part of the ballet seems to be an exploration of the stims, in dance form. They included rocking, finger flicking, propriorecptive & other kinsetic stims (including Zane’s propensity for being upside down), and vocal and breathing stims. There might have been a story line there, but I was lost in the dance and just facinated seeing the everyday movements turned into dance form, so if there was a story line here, I missed it.

In the last section, there was a man that was clearly the boy grown up, and some of the early movement themes were repeated. Now the stage was filled with dancers, all moving together in whirl of complimentary actions (based on stims) for a while, and suddenly dancers start falling to the floor. The autist goes around trying to make them stand up, but more and more dancers fall to the floor and everything starts falling apart. He then starts moving between the dancers and dancing and clapping and everybody gets in sync again and is dancing beautifully. This last part was interpreted in dramatically different ways by other audience members, but I don’t agree with them. I think the last part was showing that the autist had everything arranged how he liked it and something came in and messed it up, and everything fell apart for a while, but since he is an adult, he has learned how to get everything back together on his own (the parents weren’t there). I found it really inspirational.

I don’t think I can tell you, in words, how incredible this dance is. I have always really enjoyed dance and going to ballets are one of my favorite things to do, but I know I have never been as affected by a dance before. Powerful experience. I hope they are able to get the funding to tour, but it will be coming to New York in the next months.

I noticed today some of the direct affects of being the mom of an autistic child.

It struck me today how much easier it is for me to take pictures, especially in situations where before I wouldn’t have because I would be afraid that people might think me odd. I am able to push past that and just do it anyway because of the skin I have grown having to deal with constantly being judged by people for having a child who doesn’t behave in socially appropriate ways. I just don’t care as much what other people think of me any more. I can’t. I couldn’t cope with life if I let it get to me so I have learned not to let it affect me. There is a freedom with that I might never have experienced if it weren’t for Zane joining our lives.

The other thing that has changed is that I take a lot more pictures in general. I like taking pictures, but I think that I take more because it is the way I communicate with Zane. Where words fail to communicate, pictures step in and tell the story. It is a universal language that he understands.

I am also more aware of patterns and other details. I see the world differently. There are a ton of pictures I haven’t posted yet because I am waiting until it is a more cohesive collection, but it is a series of pictures of just the tiles and patterns of the architecture. I found joy in them and wanted to share it with Zane because I knew he would enjoy it. I see things that I would have passed over before him. It adds a richness to my life that would have been empty before, and I wouldn’t have even realized it was empty.

Just a few musing as I sit here half a world away from the kiddo that has changed me so much. Ah, I miss the kids. It took me a few days, but I miss them now.

Zane made a tie dye shirt his first day. I saw them making them in one of the news videos, it looks like they folded them up and then sprayed them with paint/dye of some kind.

When I picked him up, this is not the shirt he had. He brought home a shirt that said “Zach” on it and he wanted dh to put it on because it was “for daddy”. Zach decreed there would be no more using of his first name in front of the kids. lol. Zora already calls him “Zach” more times than she calls him “Daddy” and now this. (suddenly grandparents referring to each other as “mother” and “father” made a lot more sense). As it turns out, it wasn’t Zane’s shirt, it was another kid’s (named Zach) shirt. We took it back and retrieved the correct one.

the front

the back

He made the flower pot. Don’t know what the tokens are for, but they are important to him.

This was one of my favorite things he brought home. They are “emotion sculptures”. When I picked him up one of the counselors (actually, she was the OT that was the initial person to evaluate him for services years ago) excitedly told me that on the first sculpture he initially had a rather blank/frowny face, but after he finished it he looked at it really hard, then changed the mouth to be smiling. Very Cool!

I asked him what emotion/feeling they were and he told me this one is “Happy”

And a close up of the face he worked so hard on…

This one feels “nothing”. (which could mean, literally, nothing, or it could be that he just didn’t have the words to really describe it how he wanted to)

And this one feels “happy” again.

For those lucky enough to have missed this gem, here is a quote from his show July 16:

Now, you want me to tell you my opinion on autism, since I’m not talking about autism? A fraud, a racket. For a long while, we were hearing that every minority child had asthma. Why did they sudden — why was there an asthma epidemic amongst minority children? Because I’ll tell you why: The children got extra welfare if they were disabled, and they got extra help in school. It was a money racket. Everyone went in and was told [fake cough], “When the nurse looks at you, you go [fake cough], ‘I don’t know, the dust got me.’ ” See, everyone had asthma from the minority community. That was number one.

Now, the illness du jour is autism. You know what autism is ? I’ll tell you what autism is. In 99 percent of the cases, it’s a brat who hasn’t been told to cut the act out. That’s what autism is.
What do you mean they scream and they’re silent? They don’t have a father around to tell them, “Don’t act like a moron. You’ll get nowhere in life. Stop acting like a putz. Straighten up. Act like a man. Don’t sit there crying and screaming, idiot.”

Autism — everybody has an illness. If I behaved like a fool, my father called me a fool. And he said to me, “Don’t behave like a fool.” The worst thing he said — “Don’t behave like a fool. Don’t be anybody’s dummy. Don’t sound like an idiot. Don’t act like a girl. Don’t cry.” That’s what I was raised with. That’s what you should raise your children with. Stop with the sensitivity training. You’re turning your son into a girl, and you’re turning your nation into a nation of losers and beaten men. That’s why we have the politicians we have.

After an uproar, and him claiming that he would never apologize, Low and behold…here is a copy of his defense of his comments:

My comments about autism were meant to boldly awaken parents and children to the medical community’s attempt to label too many children or adults as “autistic.”

Just as some drug companies have overdiagnosed “ADD” and “ADHD” to peddle dangerous speed-like drugs to children as young as 4 years of age, this cartel of doctors and drug companies is now creating a national panic by overdiagnosing “autism, for which there is no definitive medical diagnosis!

Many children are being victimized by being diagnosed with an “illness” which may not exist, in all cases. Just a few weeks ago doctors recommended dangerous anti-cholesterol drugs for children as young as 2 years of age! Without any scientific studies on the possible dangers of such drugs on children, corrupt doctors made this controversial, unscientific recommendation.

Increasingly, our children are being used as profit centers by a greedy, corrupt medical/pharmaceutical establishment. As the brother of a severely disabled person who suffered and died in a New York “snake-pit” of a “mental hospital,” I know first-hand what true disability is.

To permit greedy doctors to include children in medical categories which may not be appropriate is a crime against that child and their family. Let the truly autistic be treated. Let the falsely diagnosed be free.

Michael Savage

 

When I first heard the initial quote I was incensed.  Very upset.  I went to look up his name and discovered that this is probably one of the least offensive things he has said.  The dude is a lunatic.  As much as I passionately hate Rush Limbaugh and Ann Coulter, because they are also assholish idiots, this guy somehow manages to be even just a little bit worse.  I can’t take somebody this stupid seriously.  He is a shock jock who was obviously hit in the head a few too many times by his asshole father. 

There is a part of me that wishes there wasn’t such a response to this guy, even as I add to that response, because it is what feeds him.  I would never have heard of the guy if not for the uproar.  I do wonder if it was a smart thing for him to do though.  Autism crosses all socio-economic and political boundaries, and there are as many conservatives with autistic relatives as liberal, and it might be problematic for him if he ticks off his base audience.  The liberals already know he is a fruit.

http://www.kansas.com/news/story/454961.html

I don’t think we know them.  Nevertheless, I am heartbroken for them and scared that it could be us.

If team members were asked “How many IEP meetings does it take to change a light bulb,” this what I imagine they might say:

Parent – “The light bulb is not the only thing that’s burnt out.”General Education Teacher – “No one said I was going to have to teach changing light bulbs.”

Case Manager – “If you hadn’t wanted so many hours of service in that room, maybe the light bulb wouldn’t have burned out.”

Transition Coordinator – “I think they cover that in life skills.”

Special Education Teacher – “We don’t need a light bulb, it’s not like they’re reading or writing.”

Special Education Director – “We’ll have to just keep changing his placement until we find a room that has a light bulb.”

Resource Teacher – “The side benefit is that we’ll have to bring them up from the basement.”

Teaching Assistant – “We don’t really need a new light bulb, there’s enough light coming off the television.”

School District Attorney – “The regulations don’t require light in the timeout room.”

Dean of Discipline- “Is there supposed to be a light in the time-out room?”

Assistive Technology Team – “First, we have to determine that the light bulb’s really burnt out and then we can trial a flashlight.”

School Nurse – “I don’t know how many it will take to change the light bulb, but all the special ed children will have to go home until we do.”

Secretary at the meeting – “O.K. then, how many minutes of light are we allotting in the IEP?”

Special Education Director – “We are willing to provide nightlights and maybe open the door a crack; we feel this is more than educationally appropriate and all Rowley requires.”

Teacher – (Sobbing) “What do you people expect from us anyway!”

Parent – “I don’t understand why you’re being so difficult, it’s not like we’re asking for a chandelier.”

School Psychologist – “The children are just lazy. If they really wanted to learn they’d study by candle light like Abraham Lincoln.”

Janitorial Custodian – “I’d like to help you, but I’m not a part of the IEP team.”

Dean of Discipline – “I’m just here to make sure we write it as ‘change the light bulb.’ The minute anyone uses the word, ’screw’ this meeting is over.”

Special Education Attorney – “The light bulb is the least important thing that needs to be changed in that classroom.”

I inadvertently created a new obsession in Zane.  Yesterday we were doing a study of “Maps” and I was a bit of a loss as to how to enrich it because he already knows what maps are (the lesson was “What is a Map?”) and knows how to use a basic map (like in games, or at the zoo).  It occurred to me that he might not understand directions, so I added that on to the lesson.  I explained that north is up on a map, drew a compass on the board, then realized I should apply it more concretely, so we headed outside and I drew a directional compass on the patio in chalk.  I tried to direct him to “face north, face south” and he seemed a little confused.  I then went out to the fence and wrote the direction on each fence and stood in the middle and showed him the directions again.   You could see the lightbulb flip on in his eyes.  To help him get it into his brain a little more, I modified the “listening game” we often do (a Simon Says type game that helps him develop his receptive abilities) to include directions.  For instance:  “run to the south fence, jump 3 times”, “jump to the east fence, then to the north fence”, ect.  The only problem was he didn’t want to stop playing it.  He kept begging me to keep playing “Map game” all day.  Later in the day I added “NE, NW,…” to each of the corners, and he seemed to get that right away.

Today, going to ST, I remembered that our truck has a directional indicator on it.  We had gone over the map to go to ST yesterday (he also wanted to know where Dillons, Target, Walmart and church were), and I think the road map clicked in his brain today.  During the drive I heard a blow by blow every time I changed directions, finishing with “go to the east” when he exited the car door to go into the front door of the building (which was, of course, to the east of where we were standing). 

Maybe I shouldn’t have taught him directions.  lol.

Zane at ST today:  one last leap before the semester ends.

It was his last session of the semester today.  Among the activities, they made ice cream and ate it at the end of ST.  Ice Cream is one of Zane’s favorite things, so this was a big hit.  I waited for him to finish his ice cream to ask “what did you do today” (he has a visual schedule that helps him relay what he did to me, and learning to relay information like that is a major point for ST this semester).  When he finally finished, he was not interested in the schedule, but wanted to ask for more ice cream.  We told him there was no more.  After pushing him to tell me what he did (met with mumbles and “MADE ICE CREAM!”), he booked it back down the hallway to the room. 

The Clinical Educator, the ST student teachers and I moved into the observation room to see what he was doing in there.  One of the students suggested he was going to throw away the cup and spoon, which he is a bit compulsive about, but I suspected he was going to try and make more ice cream.  He wandered around the room, the way he does when he is contemplating a plan, and decides to pull the bookcase out where the student had hidden the ingredients “out of reach”.  He stood there with the container in his hands, trying to decide what to do next I guess.  He started looking for either the other ingredients or the recipe, but stopped one time to look at the door.  I suspect he heard a noise and was trying to determine if it was the door opening.  It was suggested that he was hoping somebody was coming to help him make some ice cream.  I doubted that was what it was, but it was certainly possible. 

His student teacher heads down the hall to get him, and we watch him resume looking for ingredients.  We didn’t have to be told when he heard the door handle jiggle though….the kid startled and sprinted across the room, hiding the container, presumably pushing the case back against the wall (out of camera range) and was standing there with that “I’m not doing anything” body posture when she came into the room.   The small group watching in the observation room all cheered and excitedly exclaimed how fantastic that was, how wonderful.  Then we laughed at ourselves because only in the world of autism do people get really, really excited to see a kid be deceptive, sneaky, or lie.  Theory of mind, baby.  Theory of mind.  He is getting it.  One of those unteachable things, but he is getting it.

Along the same lines…earlier in the day

When I told Zach about the ST experience, he relayed a similar event from earlier in the day that he forgot to tell me.  We have the Leapfrog letter whammer on our fridge.  It is Zora’s, but Zane keeps trying to take it over to play with it, and hates it when she is playing with it.  After a battle, he had been banned from the kitchen while she was playing with it.  Every time Zach would get to his computer, Zane would go into the kitchen…Zach would get up, Zane would step back out, after a few times of this, Zane waited until Zach sat down, repeat dance.  Zach told him to go do something else, so Zane went to the computer, Zach went to his computer, and all was quiet for a minute and then Zane got back up and started heading to the kitchen.  When Zach got up to follow him, he stepped back out of the kitchen and ‘decided’ that he was going outside all along, and wasn’t going into the kitchen.  Now Zane is outside, Zora is still in the kitchen, and Zach heads back to the computer.  After a bit he hears a rustle and sees Zane sneaking back inside to the kitchen, gets up, and sends Zane to his room.  lol. The constant back and forth dance of Zane trying to sneak was amazing, and fairly new, especially on this level of sophistication.  It was pretty cool.

For those going Huh?, your happy your child is being deceitful?

Yes, I am.  VERY happy.  In order to employ manipulation and deceit, you have to understand how other’s will react to your actions.  You have to be able to form a theory of how the other person is thinking and plan your actions around that to get the outcome you want.  Autistics, as a whole, are very, very bad at lying, and in some cases, incapable of it.  (nor do they understand that others lie or are being deceptive in any way)  It is one of the core issues with autism…inability to be able to understand how other’s think or recognize that other people have thoughts. 

From a parents POV, the dilemma

I really want him to be able to continue to develop this.  This is one of the key issues of the difference between institutionalization and not, the ability to be able to tell when people are lying, the ability to decide when it is in your best interests to lie, deceive, or manipulate a situation.  It is a HUGE safety issue and I really want him to develop those skills. 

However, trying to find the balance of encouraging the development while teaching him that you should be honest with your parents/loved ones, ect is really going to be tough.  I have no clue how to do this.  With typically developing kids, the hard part is getting them to be honest when they should be (to us, to authority figures we feel are trustworthy)…they figure out long before they speak that deception is a way to get what you want.  (like Zora provoking Zane by hitting him, and then complaining loudly when he retaliated just to get him into trouble..until we figured out what was happening and she started getting into trouble instead of Zane)  There aren’t any books out there that say “How to teach your child when to tell the truth and when to lie” because for most kids “never lie” covers it well enough because they instinctually know that lying is sometime a better choice for their own safety and comfort (and your job is to tell when they are trying to avoid punishment, ect, and try and get them to stop doing it to YOU, just to strangers).

Some days kids make leaps that make you really step up the parenting game.  Today was one of those.

Beautiful, but no, NEVER, really…you could not pay me enough.  *shudder*

You know those foot pads that are supposed to rid your body of toxins?  Interesting discussion of it.

For the frugal:  The Grocery Game  I had been hearing about it but never went to the site.  Looks interesting. 

For those interested in vaccine issues, a huge scandal at Merck, one of the main manufacturers:  http://www.fda.gov/foi/warning_letters/s6756c.pdf

A company I really like (and several of my therapists rely on) is being attacked by Mattel:  Small Special Education Company Battles Mattel Over Right to Use the Words “AND SAY” on Its Products

I thought this was interesting…charts that show what people are spending on groceries, updated monthly.

eta:

I am going to add one more rather than starting a new post:  3-Year-Old Has Never Fallen Asleep.  Wow.  Zane never slept more than 3-4 hours in any given 24-48 hour period until he was between 3 and 4, and I thought that was bad.  I can’t even imagine how sleep deprived those parents are.  I really think that the sleep deprivation affected my ability to really understand what was going on in those early years.  I just felt like I was a terrible parent and stopped sharing how bad it was with people.  I know now that lack of ability to sleep is fairly common in autism, but I didn’t know it then and blamed myself.