Aspergers and the Issue of Labels

Posting about Asperger’s in any manner brings out a variety of responses. Luckily none of my readers take the Dennis Leary approach of using broadside humor to obscure the reality of what kids who meet the criteria are living with. Unlike many other people I don’t have an issue with Leary. He is using Asperger’s the same way other comics use obesity, i.e. it is merely fodder for cheap shot visceral gags. Not all obesity is the result of a failure of will or personal character either. However, I am glad that the people who respond to me are thoughtful and offer measured commentary.

In that regards I got an e-mail in response to my posting on Parenthood. I have edited it just a little so that the author is not readily identifiable. But I think her e-mail merited more that just a hidden interchange between she and I. The issues she raised are some of the key aspects of the debate on Asperger’s. Here is the e-mail and also my response.


Dear G,

I wanted to respond to your blog but I didn't want to sign up for a Google account, so since I know the author personally I thought I'd just share my thoughts with you. I hope nothing I say will offend you as I do not have any first hand knowledge of Asperger's Syndrome except that I am a teacher familiar with a range of conditions. My own child had an IEP all throughout her school years. She was/is a stutterer and while it is dramatically different than what you are dealing with, I know the heartache a parent can have when their child is not "like everyone else."

Since this blog entry was related to a TV show, I was reminded of another show I recently watched, some doctor show where the dad was in denial about his 11 year old daughter’s schizophrenia. He felt like he caused it. I immediately go there whenever my children have any kind of flaw. I assume they must have gotten it from me.

I wonder if there has ever been any studies on the parents of Asperger Syndrome kids and any connection to high intelligence. I always suspected you were pretty smart. (They told us in our teacher classes that Bill Gates had Aspergers).

Aspergers Syndrome was never even a diagnosis back when we were kids was it? And if it wasn't and kids still had it but it wasn't diagnosed as such, didn't the kids simply grow up and get on with life the best they could. Wasn’t it kind of like before ADD/ADHD kids were diagnosed and put on meds?

I'm not trying to minimize your son's condition in anyway but sometimes I think that maybe labeling kids with these diagnoses might make the parents and the kids feel worse. These names are so powerful. As a teacher I see kids with psychological and physical limitations but I can tell you that I have always tried to see the child as a person and not as their condition and hopefully your son's teachers can do that as well.

Bea,


Dear B,

I would not be offended by anything you might say in a considered discussion. I understand the label issue you have raised and it is one we considered long and hard before getting involved with the whole machine of psychologists/ASD consultants, diagnoses, etc.

In a way we were forced to make the choice we did due to the strains on public education here in Michigan. Without a diagnosis the chances were quite strong that Primus would simply be considered a troubled child and shunted to the edge of the mainstream. It was already happening when we took action. We know and his SAT scores show (he scored median for college bound high school seniors when he took that test in seventh grade) he is a bright kid.

I make the above comment about being shunted aside without reservations as to the accuracy of the statement. Primus had begun demonstrating very clear and evident ASD traits in the second grade. However despite what was supposed to be an intervention with a school social worker (who I have since been told had been trained on ASD issues) not a word was said to us about larger issues beyond shyness that might exist for him.

The intervention which was ostensibly to try and aid him building social connections, something it was evident he did not care about. The intervention brought out no referral or suggestion for an evaluation for a condition like ASD. Other issues tied to the disorder were clearly evident at that time. A review of our notes from past parent teacher conferences show that symptoms were being referenced by his teachers that nobody in the school social work/psychologists office thought to tie together.

Every one in the system was more than happy to leave him to fend for himself despite problems with auditory stimulus, limitations with fine motor skill function, extreme clumsiness and grand scale social ineptness. I have since had contact with others in the district that have alerted me that become of economics involved in working with disabilities the schools do not want to find a diagnosis of Aspergers if it can at all be avoided; it is costly.

The way we became aware of ASD was though my wife. One day as my spouse who works at Michigan State University for the Dean of one of the colleges was sorting through prof-net queries (queries seeking thoughts on scientific questions sent out to universities all over the place) to forward on to different faculty she came upon one researcher who was seeking learned comments on why the Aspergers syndrome in boys was growing at such a rapid rate. Wondering what Aspergers was she then looked up the parameters of the diagnosis and brought it to me. Looking at what she found and how closely it aligned with our son’s behaviors I agreed we should get him evaluated. The psychologist we eventually found told us he hit the diagnosis on all measures.

We then called the school and asked to set up an evaluation for an IEP. There response was that they would contact us at a later time. We waited and we waited. At that point I did my legal research and figured out that without a written demand the school would not have to act. Post haste I sent the demand letter that sets the time limits for conducting the review. It is reasonably certain he school would not have moved forward without that little certified letter. When they did the review not a single drafter of the seven reports the school district created did anything other than acknowledge the condition.

Since the IEP has been in place we have been able to deal with issues that would have caused Primus endless grief and bad grades in the past. One teacher last year insisted on giving him assignments that repeatedly called for him to place himself in the shoes of another and write about their emotions. Duh, we kept writing her e-mails indicating that Aspergers kids are not tied into this level of emotion so as to be able to write at length on issues of sympathy and empathy. Without the intervention of the advocate the teacher was hell bent on flunking him because he would not do this kind of work. We asked the teacher if he could do technical reports or more straightforward book reviews before getting the advocate involved. We were rebuffed and she was having none of it. The advocate then stepped in and took over and created the writing assignments.

In our day in school, in our more rural than not environment, a good caring teacher could read these differences in children and work out a way to bring along a kid who had special needs and unique talents to a point that their life would matter. In a urban environment where the curriculum is driven by the no test not taken standard there is no margin that will allow a teacher to do that kind of thing. Without the club that the label is and without the sanctions that follow from not following an IEP my child would have been written off as a troubled and troublesome ass.

Forgive me if I sound a little hostile toward my district the experience has truly been a mixed bag. I have worked with some very good people in our system here. However I think the state of education in Michigan is such that economics drive decisions about child welfare. It is in every administrator’s best interest to avoid the costs associated with IEPs.

You mention the comment I have heard often about why there is such prevalence now of this disorder as opposed to when we were in school. Two or three things come to mind. One is that with the growth of psychological and the empirical studies of behavior we have broken down that much larger class of behaviors that we used to define as “different” behaviors. We can separate things out that used to be lumped together. Second I believe that our environment has impacted us in ways that with the more concentrated toxicity manifests more readily. Hey I have heard you say in our posts, that you believe there is something in the Delaware Valley that causes physiological issues. You had the onset of your illness in your twenties. I had prostate cancer at 50 which is really young for that malady to show up. Do I blame the DuPont stench, well maybe. Could the crap we inhaled as teens have impacted our genes and cells so that it has altered the next generation, well definitely maybe.

I am not an advocate here for anyone but my son. But what I know is that in our case the label has helped more than hurt.

There is a point to your comments. It is clear that you care for kids in your charge and other kids dealing with the academic process. I am sure every single day you are engaged in a balancing act with regard to each child you interact with. With all the labels and programs and requirements sometimes you wish it could be resolved in a simpler more holistic way. Me too. But our world is not the world we lived in as kids when a look from a seasoned gym teacher would stop a kid dead in his tracks or a caring history teacher would pull you aside and work with you.

Our society as a whole outside of engineering doesn't have places for the socially inept but technically skilled anymore. We are too wired a world for that. With Facebook and cameras on every phone the awkward are at risk. I digress.


Sincerely,


G

Light

Light fades on the worn brick of the chimney I see out my window.
The weathering of the blocks does not matter
Nor does aging peeling paint
Nor the bird perched atop the flue cap
A wing flaps now and now again
Fading light golden and warm
Fading light the glorious crown of a premature spring day
Fading light golden and precious
Light now fading is what matters in this narrow view
I hold of spring’s reality

TV and Aspergers Syndrome, Some Hope for Reality

To my one most loyal reader, the ABU got straight 1s at Festival. The only glitch was during sight reading when 50% of the ABU and several of the second violins just couldn’t figure out the time signature. Primus swears it wasn’t him that befouled the ABU’s stellar reputation.

More will be posted on the whole experience soon. I have to say that showing up on a Friday as a man normally beholden to a 8-5 job to do volunteer work at Festival really pissed off the Muffy crowd. Oh you know who I mean. These women are the epitome of attitude. I could hear them thinking as they stared me down, ‘I am still imbued with the values of the 1960s and I have a husband who makes enough for me to stay home and raise my kids right as opposed to the negligent job you and your working wife are doing loser. Oh by the way my husband also makes enough to pay for the augmentation to keep these puppies perky enough to wear these overly tight sweaters I opt to wear no matter what the season.’ But like I said, more on the social dynamics of volunteering at the land of social economic stratification will come at a later time.

But on to my real topic today, sometimes you see a bit of television that just nails your personal experience perfectly. This past Saturday I watched an episode of Parenthood and it was dead on, really dead on. My beloved spouse who watched the episode with me repeated the comments that she usually saves for Arlo and Janis comic strips, “Hey they have a microphone in our bedroom” and “where is our royalty check?”

How dead on was it you ask? Well there was the possum thing. The one guy who seems to be the center of this television series Adam Braverman (Peter Krause) is lying in bed at night when he hears a sound outside. The sound is slight but obviously animal. The hero he wants to be makes Adam jump out of bed and grab a tennis racket. He then goes outside to face the wilderness threat. I have not tried the tennis racket as a tool of animal control yet but I have observed others do this.

In my family’s case our wilderness noise was the killer squirrel that rampaged back and forth in our attic. Demon squirrel as I came to call it somehow got into the attic via a rotted soffit. The red eyed black furred beast while in the attic got into a box of toys and chewed up my security pillow that my aunt had made me as an infant. The pillow was a blue dog with my name in script on it. I miss my lovey puppy dog. Damn demon squirrel.

Anyway the squirrel by this act of malicious destruction of a forty plus year old pillow so pissed me off so much that it required a trip to ACE to get a squirrel trap. Nota Bene, I looked at other options. However, most animal specialists in the Mid-Michigan area don’t kill squirrels or opossums or other varmints. What they do is live trap the critter and transport. For this they bill by the hour. This paradigm is sort of the INS approach to illegal aliens applied to squirrels, I mean you know the little buggers will just keep coming back. The trap made economic sense because the animal specialists’ hourly rate ain’t cheap.

Facing the choice between sanity and economic ruin it was as I said it was a trip to the hardware store for a consultation with the old guy who seemed to be dean of the place. Most hardware stores have old guys that offer impliedly sage advice. Usually there are hard of hearing, missing a digit or two and wear an eye patch from where that tire they overinflated blew. My guru old guy recommended the Squirrelinator 3000 trap. His next suggestion was to use peanut butter as bait.

Up until Rocket J. Squirrel gave in to his legume lust we had to listen to him scurry up and down the attic from one end to the other. You would have thought the beast was playing ten pins and had to manually re-rack after each frame.
Dad Adam in Parenthood was facing the same thing and his nerves were frayed. I got it; I mean I really felt his pain. The hissing opossum which he inadvertently trapped scarred the pee right out of him much like the very po’d captured squirrel rocking the Squirrelinator 3000 back and forth in my attic did me.

But the similarities did not end there. This Dad character has a son who is “different”. The son has fascination with narrow topic areas. He insists on eating only certain favorite foods and is very rule driven. Finally the son insists on wearing a pirate costume to school. Hmmmh. I have seen most of this stuff (save the pirate costume) before. Then the A word is then mentioned.

Like every impacted parent who sees a reference to Asperger’s coming I cringed. I don’t know if it was the CSI episode where the kid with Aspergers was taken advantage of and made part of a murderous plot that made me sensitive to this or if maybe it was the never stated but very evidently Asperger’s guy who was the rule driven methodical killer on Criminal Minds.

Or maybe it was Sheldon on the Big Bang. Sheldon is a tough one though. He is so ASD that he can be used as a teaching tool for our son. Often I find myself standing there at the end of a Big Bang episode saying, “What could Sheldon have done that would have brought about a better response/result?” This is a regular game we play here. I note that it very hard to keep a straight face when Primus is laughing his ass off at Sheldon because I am thinking something like, son you are Sheldon.

Anyway back to the show at hand Parenthood. The parents hear from someone that these quirky behaviors of there child seem like symptoms of Aspergers. They scratch their heads and try and think of someone they know with a kid with that diagnosis. They shudder when they realize who the other family is. They are worried because the parents of the child seem a bit off themselves.

Next the father begins researching for “Aspergers cure” on Google. Next while still online he hits a faith based site for dealing with Asperger’s. Next he is firing between sites looking overwhelmed and thoroughly confused. I have so been there, so done that. Do I need mention that I am still overwhelmed and confused?

The Bravermans again trying to be the good parents, then tries to get their son in to see a specialist. However the specialist is booked out for 18 months. Via a weird and obviously TV reality only turn they get their son in to see the Bob Dylan of Asperger’s specialists. Hell just to find someone in Mid-Michgian that works with Asperger’s was a Herculean task.

My wife and I had to deal with the vagaries of insurance and filled panels. Blue Care Network of Mid-Michigan had text in their benefit description indicating we had to get a primary care doctor’s authorization to see a specialist. We did that and then we called the insurer. As soon as we got through the endless prompts on the 1-800 number we were informed no that wasn’t how it worked. Instead we were told by this particular clerical we had to get the insurer’s okay on who to see. Oh and by the way she stated in a casual aside there were only five doctors/psychologists in our area (read a 100 mile radius) that are potentially qualified.

Mom dutifully called each of them. Two said they no longer participated with the plan, one dealt only with children with criminal involvement, one was a gerontology focused practice and another had a full panel. Health care even with good insurance is just a bowl of jollies now isn’t it?

It was only when we were breaking down while in contact with one of the “no longer participating” that we found they had one person in the practice who still worked with the insurer and focused on ASD kids. We set up the appointment and much like the parents sat with baited breath at the end of the session. When the diagnosis came our conversation played out almost exactly as it did in the television series. I sat there hoping ASD was a phase and saying something stupid like we’ll get through this, like ASD is something that is anything other that a permanent set of characteristics. Afterwards as God is my witness I told my wife it was my fault and my families fault, just as Adam Braverman does in the series.

The feeling in the episode seemed true to reality. It seems as if the writer who is crafting this plot line has been there/done that. In a later episode there is an incident at school which results in the couple’s child being thrown out of school. In my experience you aren’t really the parent of an ASD kid until you have this or a very similar moment.

The call from the school usually begins with a euphemistically termed phrase like, “there has been an incident”. In the series the incident was the destruction of a fish tank. As the parents noted standing among the shards of glass and the dispersed pretty stones that had lined the bottom of the tank there were no survivors. Yeah I have stood among that rubble a number of times.

In my life the most recent incident occurred when I was going to school to do my parental volunteerism duty i.e, I was going to watch coats for the band festival as noted above. It was there when I was just entering the school that I found myself meeting my son and the social worker in the hallway kibitzing in soft tones with heads down. Hey I knew what this was I have been there many, many times in the past. Before I could get to my assigned task I was pulled aside by the social worker and told “there was an incident”.

The most recent incident for us was that Primus was being taunted by kids in his math class over a pencil having gone missing on a substitute teacher’s desk. Instead of hurting the child (and at six foot 170 pounds at 14 years of age this was theoretically possible) Primus stood up and to quote the social worker called the harasser a child rapist in a very loud voice and walked out of the room because he could not take the harassment any more.

Really what child at 14 unless they are fairly intelligent would go for the heinous “child rapist” term over something straightforward like numb nuts or useless fucker? After stomping out of the room Primus went down to the vice principal’s office. No sanctions followed but the vice principal’s office has now been designated as my son’s cooling down place on an as needed basis. Getting that space so designated is actually a victory because the school resisted a suggestion that it was needed at last year’s IEP plan meeting. (Each year we plan an educational and support track for my son, it is called an Individualized Education Plan).

Yeah, so far the writers of Parenthood are getting this issue right. I hope it continues. ASD is a growing disorder. What the cause is I don’t know. I know the statistics are upward trending for diagnoses of the disorder. I also know scientists have really been arguing the postulated vaccine correlation does not hold true. One thread of inquiry that seems logical to me and which intrigues me is the thought that common chemicals now widely dispersed in our environment, everything from cleaning products to the staples of manufacturing (stuff that is in everything from couches to sippy cups) may impact pregnant women in the early weeks of fetal development. It is not for this series to be a documentary on ASD impacted life or a white paper on causation or treatment. Still it would be nice if the story line keeps the issue of the how a family impacted with Asperger’s copes real.

Here is the link to the initial episode of Parenthood regarding Asperger’s http://www.hulu.com/watch/133234/parenthood-man-versus-possum

Boring Monday

Tuesday, March 16, 2010

Last night I spent the evening being a couch potato mostly. In reality I lay on the living room floor with a pillow and watched a trashy spy comedy and followed it up with a police procedural.

Oh I did get off the flow. For about 45 minutes I worked on a blog post about a TV show I had seen over the weekend. It required more time and I felt too tired so it is still in draft. After I stopped writing I did a little poking around on the internet looking at various sites to see what might catch my interest. About the most intriguing thing I saw was a truck that an animator had crafted a flashing series of illustrations around that looked like neon lights. Such a little thing, but it made me giggle.

The evening was not a total waste. Francie and I went to the nearest coffee shop to use the free latte coupon that everyone, and I mean everyone, in the community was taking advantage of. The nearest store in the chain refused to honor it. However the second nearest did accept it. A butter latte was had and it was good.

Also accomplished was a trip to the local service station. Secundus and I filled our bike tires with air. We then on bikes with inflated tires went to the library to pick up some music to transfer onto the laptop. I rather enjoyed the Vampire Weekend: Contra disk we found. It is a little hard to explain why the music caught my ear but mostly it is because of the CD’s infectious up beat pop.

Today’s meditation is:

Divine grace is working; therefore I am on my way to being healed.

It is comforting, whether true or not, to think that grace an elegant gift of love is working to make us whole. Really I kind of throw in with Norman Vincent Peale, if you believe in the positive and act in a positive manner there is a better than average chance that things will improve. Grace doesn’t necessary have to flow from without, it can flow from within.

More on the Weekend. The ABU is up next

Saturday, March 06, 2010

A note on what is upcoming next with the orchestra experience. The local high school freshman orchestra has a variety of talented and gifted players. Violins, cellos and all sorts of other little instruments will play their hearts out. But the driving beat, the force for our chamber orchestra is the ABU (the Aspergers Bass Unit).

Both of the bass players in the chamber orchestra have ASD (Autism Spectrum Disorder) that meets the current criteria for Aspergers. Both of the bass players are big and blond. Really when they take the stage they look like two Nordic brothers with wild hair on bass. Sometimes I think they give this group better grades than they deserve because the bass players look like that might wreak havoc if they were unhappy with the judges scoring. More often think how much of a challenge it must be for the orchestra director to handle two guys that are 6 foot plus tall, 170 pounds plus who are quiet and somewhat intransigent (euphemism) as he is working up an arrangement. Still for whatever reason the ABU works.

The performance is in about an hour. I will post afterward how things have gone. It is important as least for me personally to remember a diagnosis of ASD is not something that stops the world. Primus plays hockey, is in an orchestra and has a devilish sense of humor. It is just navigating the shoals of interpersonal relationships such as misinterpretation and intolerance that make ASD the challenge it is.

Just Checking In

Saturday, March 06, 2010

The weekend is already swirling about with all sorts of activity.

Last night we met some of our friends downtown. Very quickly they jettisoned my wife and me for an invite only event. Fedoras in place they were off to a meeting of the purportedly 600 coolest people in Lansing, MI. Hmmmh could there even be 600 cool people in Lansing, MI.? Me I have never been cool. Might have seen that elusive state from a distance once, but there is no point in chasing the smoke of a vanishing train at this point in my life.

Well anyway when our friends bolted we found ourselves sitting at the bar next to a young man who does risk assessment. He remember us but not we him. He was our new next door neighbor. Pat was his name and he has moved into the house right across the street from us. We have spoken a couple of times but nothing significant. As we talked last evening we did the ritual dance of asking where do you work, what do you do when you are not working and any surprises about the new home? It was at this point the conversation became attention-grabbing.

In response to the last question our neighbor pulled out his cell phone and said something like, “Interesting you should ask that.” He then indicated he was doing interior remodeling stuff. He continued stating he had pulled some paneling down to replace it with dry wall when he found this. Could we have a drum roll please? The image on the phone was of an actual human skull. Per Pat he pulled a panel off and found an old brown paper bag tucked into a crevice. When he pulled the A&P sack open out he recoiled. (This is my term because expressions about explosive bodily expulsions just cheapen the blog experience.)

Pat explained that once he stopped hyperventilating he had called the ELPD over to look at it. According to Pat the police believe it may be from a medical school based on the precision with which the skull was “prepared.” I am not sure prepared it the right world, but the cranium was absent of any brain matter or its residue so unless he prior owners had very odd ingredients for stone soup...well you get my drift. The police had talked to the guy next to Pat who has lived in his house about 35 years. He gave them a list of every person who had been there in the past 3 ½ decades. (This should stand as another cautionary point-you neighbors are watching you.)

Thanking Pat for the tales of dismembered heads we heading out for the night. For the record I had two beers. One was a high alcohol Imperial Russian Stout so in reality I had about 2 2/3rds beers. I was living large and on the edge for me. Okay this means I cannot drink again until April 15th or so. Remember the gmanitou rule, 2 beers per months whether I need them or not.

This morning I got up and went with Secundus to the Mid-Michigan Band and Orchestra Festival. This is a big deal for band weenies and orch-a-dorks. They are all striving to get ones in the performance categories. Right off the bat things took a sideways turn. Secundus as is his habit spilled orange juice on his freshly laundered shirt where we had stopped to grab a breakfast bagel. Into the washroom we dashed seeking running water. At a distance it was okay. It is back to the laundry for that frilly poufy orchestra shirt.

With moist shirt Secundus cranked out his performance before the judges. His horn sounded solid. His work at sight reading also sounded pretty good. We will get the scores when we go back this afternoon. You see Primus has his performance with the chamber orchestra at about 2:40.

Allow divine love to remake me.

Taking a footstep is automatic. We do not think of how one of our feet will fall in front of the other. Our gait is virtually automatic adjusting to weather and pavement conditions. In so many aspects of our lives we try to live the entire day like this, one step following another without thought. Times are such we should indeed think before we act.

Every choice we take whether conscious or not has a consequence. Opting to really listen as opposed to using a mental flow chart to evaluate a conversation can make the world a different place for someone, maybe a better place. A little bit of thought can turn the drone into sense. A little bit of focus can make a real difference. Slow down and listen, what is the hurry? There is only one today.