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Doctor: Why we’re making changes to autism diagnosis – CNN.com.

Part of the anxiety over the new DSM-V definition is the way it may affect the ability of families to get services. The way our health system currently works,  diagnosis restricts or expands the type and frequency of services offered. Autism is a very expensive disorder to treat, and it has significant impact upon the finances of the family. This is one reason why I personally support health care reform, so that every child has equal access to treatment.

Well, not long after my last post, Rob lost the job at the print shop. The owner seemed like a nice guy and one that really wanted his employees to succeed; so I did what I have not done until now: I called him to get his story on why Rob was fired. Rob said he had no idea, except that he had been late a few times. I try really hard not to be a “helicopter parent” but I really wanted to get to the bottom of what was going on. What I learned is that the problem was mainly with communication. Lateness was an issue, but that was also fueled by bad communication. He felt that he could just not “get through” to Rob. He was sad and puzzled because he thought that Rob’s technical skills were excellent.

I asked him if he knew that Rob has AS. He said he did not, but that knowing made certain things more understandable. Here is an example he gave me that helped me understand the communication struggles they were having:

Rob was coming to work in wrinkled t-shirts. The boss wanted him to look more professional, but rather than say so directly, he tried to be indirect. The print shop had polo shirts as well as t-shirts, so the boss had Rob make a polo shirt with his name on it and put it on, and then told him how much better and more professional he looked. The next day, Rob showed up again in a wrinkled t-shirt. When his boss asked, “What happened to the polo shirt?” Rob replied, “I don’t like polo shirts.”

Rob totally missed the point: which he tends to do if it is not spelled out directly. This also had ramifications for the issue of being late. The shop opened at 9. The boss wanted Rob there by 8:45. Rob was getting there consistently right at 9. Rob didn’t really believe that it was that important to get there early, since the shop opened at nine, and it only took a minute or so to open the store. The boss felt that it was an issue of trust. This is an issue we have had with Rob as well; he has his own way of doing things, and if he doesn’t agree with our logic or reasons for something he tends to disregard them.

The lateness is what finally got to his boss. He wanted to be able to call the store at 8:45 and know that someone was there getting ready. It was his way of feeling like things were in control. It was important enough to him that he fired Rob over it. 

I suspected it was this type of issue that was at the root of his troubles, because it is the type of thing we have with Rob all the time. And we have told him repeatedly that part of building trust is knowing that he will respect our reasoning and way of doing things even if he doesn’t agree with them, that he will learn to value what we value (truthfulness, honesty, promptness, reliability).

I did not ask the boss to give Rob another chance, nor did he offer to. So Rob went back on the job market. He found a job almost immediately in another graphic design shop, but that job also ended after a few months. We really aren’t sure about what happened with that one. The work environment was pretty dysfunctional so it may not have had anything at all to do with Rob. But that’s a story for another post.

 

In case you are wondering why I changed the name of the blog, I decided that In Medias Res didn’t really describe the function of the blog as it has become: a blog about raising my autistic son. Those posts are the ones that consistently get the most hits, far and away above any other topic on this blog. I thought changing the name to better reflect the content might help others to find the information they need. If you are interested in my continuing travails as a Ph.D. student, you should check out my new wordpress blog My Academic Career. Or I also have a blog on the digital humanities, called DigIn’ the Humanities, as I am also pursuing a certificate in digital information management along with my Ph.D.

This blog will continue to be about Rob and autism, as I have time and energy to post.

The NYTimes is noting the age of many of the celebrants last night: young adults who were children when 9/11 happened. It was the defining moment of their generation; and now they finally get some closure. Indeed, my children are both jubilant; My daughter (age 25) had to suppress a sob when she heard the news; my son (age 20) thinks the news rocks. While those of us who are older may have more mixed feelings about Bin Laden’s death, it is important to also view this event through the eyes of the generation most traumatized by Bin Laden’s actions. Nothing in my life made me more angry than 9/11, in part because I saw the fear and confusion in my children’s faces. It is the role of the government to protect its citizens, and today I think many young people finally feel some safety and release. Yes they realize it’s symbolic; yes they realize that terrorism doesn’t end with the death of Bin Laden. But on a very core level, they may finally feel that an imbalance in the universe has been corrected.

Rob is continuing to do pretty well. He is still at the same job, still a shift leader; that job has had some bumps in it, though. He has an immediate supervisor that tends to say catastrophic things when she is angry, and leave catastrophic phone mail (as in, “call me in the next 10 minutes or you’re fired”). At first he (and we) would panic when he would get one of these messages. But since the situation seems to always get worked out, I am beginning to conclude that that is just her management style. It stresses Rob out, though. And I don’t like what it is doing to his morals, because he has started to say whatever he has to in order to get through the immediate crisis. He is not a particularly good liar, but he is getting practice in this job. I suppose you could call it a life skill, but I really dislike it. He says he wants to look for another job; but in this economy another job will be hard to find.

Autistic people are not supposed to be good liars; some are even incapable of lying. Rob is smart and his theory of mind has developed to where he can (and does) lie on occasion. When he was a child he was a terrible liar because he just had no idea what would sound plausible to other people. He mainly tried to lie to get out of trouble. He soon learned that he was not very good at it.  He actually went through a phase a few years ago where he was lying constantly at work (telling tall tales about his life) just to see if he could get away with it. He thought he was pulling the wool over his coworkers’ eyes, until his sister stopped by to see him one day at work. He wasn’t there, but one of his coworkers asked her, “What is with your brother? He tells all these stories and thinks we believe him. He’s just full of BS.” She passed this on to Rob, which enlightened him that he wasn’t as good a liar as he thought. This was good feedback for him to hear. He is not particularly good at gauging other people’s thoughts and reactions, of course; but he is getting better.

There tends to be all sorts of discussion about social lying on websites run by Aspies; most don’t see the point of social lying. I dislike it myself; and we have had many, many discussions about the difference between being “polite” and lying. Rob also tends to not understand the difference between an unintentionally broken promise and a lie; the idea of intention has been a hard distinction for him to grasp.

It is hard to believe, but yesterday Rob got on a plane and flew off to Japan for six weeks. He – of course – is ecstatic.  I, on the other hand, am scared to death.

While I am SO grateful that he has progressed to the point that we could even consider something like this trip, I am dreadfully afraid that it will be too much stress for him.  But he worked hard and saved the money to go,  and he was insistent that he can do it. He needs to test his own powers and find his own limits. It was the dream of a lifetime to go – how could we say no? And his kendo sensei told us that Japan is probably the safest country in the world for a young man to wander in on his own.

The first month he will not be wandering. He is in a small Japanese language program – he will be there with 12 other American students, living with Japanese host families and studying the language and the culture, with field trips and other planned activities.

The last two weeks of his trip, he will be staying with a friend of his sensei, and they will go and hike Mt. Fuji among other things. But he will be taking train trips to other parts of Japan, including attending an anime conference in Tokyo.

I asked him to send us regular updates either via email or phone. But he seemed disinclined to do that. I think in his mind, this 6 weeks is about putting his life here behind him and starting to invent a new person.  So all I can do is pray for his safety and his choices, and that he will discover new strengths and competencies in himself, and come home a more confident, mature adult.

Vital Signs – Regimens – Bleach in Bath Can Ease Child’s Eczema – NYTimes.com.

Oftentimes autistic children suffer from eczema. My son Rob did when he was young, and occasionally still gets it. We will have to try this.

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