29 Marbles

My thoughts about introversion in my post Monday morning lunatics got me thinking about a possible relationship between introversion and Asperger’s Syndrome.  That, and a thread at Computerworld discussing Asperger’s in the field of Information Technology.

Not long after starting my first post-college job, I took the Myers-Briggs Type Indicator and discovered that I was introverted.  (INTP, to be exact.)  Discovered is probably too strong a word, though, since I already knew I was introverted, as described in this definition:

I like getting my energy from dealing with the ideas, pictures, memories, and reactions that are inside my head, in my inner world. I often prefer doing things alone or with one or two people I feel comfortable with. I take time to reflect so that I have a clear idea of what I’ll be doing when I decide to act. Ideas are almost solid things for me. Sometimes I like the idea of something better than the real thing.

The following statements generally apply to me:

• I am seen as “reflective” or “reserved.”
• I feel comfortable being alone and like things I can do on my own.
• I prefer to know just a few people well.
• I sometimes spend too much time reflecting and don’t move into action quickly enough.
• I sometimes forget to check with the outside world to see if my ideas really fit the experience.

To someone not familiar with all the intricacies of an Asperger’s diagnosis, this looks a lot like Asperger’s.  But consider this definition:

Basically, an introvert is a person who is energized by being alone and whose energy is drained by being around other people.

Introverts are more concerned with the inner world of the mind. They enjoy thinking, exploring their thoughts and feelings. They often avoid social situations because being around people drains their energy. This is true even if they have good social skills. After being with people for any length of time, such as at a party, they need time alone to “recharge.”

When introverts want to be alone, it is not, by itself, a sign of depression. It means that they either need to regain their energy from being around people or that they simply want the time to be with their own thoughts. Being with people, even people they like and are comfortable with, can prevent them from their desire to be quietly introspective.

Being introspective, though, does not mean that an introvert never has conversations. However, those conversations are generally about ideas and concepts, not about what they consider the trivial matters of social small talk.

So my question is: Are introversion and Asperger’s related, or is the similarity of  the outward presentations of the two just a coincidence?  If they are related, is Asperger’s simply (I know nothing it simple) an extreme form of introversion?

Another way to look at it:  Are all people diagnosed with Asperger’s introverted, or are there some extroverted Aspies out there?

It is that time of year for military recruiters to canvas high school campuses for potential recruits.  I originally posted the following in May 06.  This article applies to those who live in the U.S.

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If your autistic child is in an inclusion setting in high school, attending as a “regular” student, you will eventually encounter military recruiters. As part of No Child Left Behind, public schools are obligated to provide student information to the local recruiters. A recent story in the Oregonian (excerpted below) shows the problems that can occur.

To help prevent this kind of problem, you can take the following steps:

• Have appropriate documents of diagnosis, treatment, IEPs, etc. for your child
• If possible, obtain a letter from the school district case manager, pediatrician and others
• Be proactive, and find out who the local recruiters are, for all services
• Be even more proactive, find out the chain of command for your local recruiters, all the way up to the first field grade officer (usually a Lieutenant Colonel, Battalion Commander)
• Send a letter to the local recruiter, with a courtesy copy to the chain of command, stating your child’s situation and that you would appreciate having your child excluded from their recruiting activities
• If needed, send the documentation you’ve gathered to the local recruiters.

Of course, you may want to ask your son or daughter what they would like to do before acting on the latter two options. They may want to, and be able to, serve in the military and it would be wrong to try to stop them (beyond the efforts many parents already make to keep their “typical” kids out of the military). On a related note, registration for Selective Service registration is still mandatory for all men on their 18th birthday. As far as I know, there are no exceptions.

Excerpt from the Oregonian:

“When Jared first started talking about joining the Army, I thought, ‘Well, that isn’t going to happen,’ ” said Paul Guinther, Jared’s father. “I told my wife not to worry about it. They’re not going to take anybody in the service who’s autistic.”

But they did. Last month, Jared came home with papers showing that he not only had enlisted, but also had signed up for the Army’s most dangerous job: cavalry scout. He is scheduled to leave for basic training Aug. 16.

Officials are now investigating whether recruiters at the U.S. Army Recruiting Station in Southeast Portland improperly concealed Jared’s disability, which should have made him ineligible for service.

…

Jared didn’t speak until he was almost 4 and could not tolerate the feel of grass on his feet.

Doctors diagnosed him with moderate to severe autism, a developmental disorder that strikes when children are toddlers. It causes problems with social interaction, language and intelligence. No one knows its cause or cure.

School and medical records show that Jared, whose recent verbal IQ tested very low, spent years in special education classes. It was only when he was a high school senior that Brenda pushed for Jared to take regular classes because she wanted him to get a normal rather than a modified diploma.

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More info about the US military services for US parents:

• Army
• Navy
• Marine Corps
• Air Force
• Coast Guard

[Go Army!!] [sorry, couldn't resist]

Last summer, I put Cooperation and the tragedy of the commons, from the Anecdote blog,  in my “to blog” pile.  It seemed relevant, but I just couldn’t quite figure out how.  In his post about an Alliance for Autism, Mike Stanton raises the problem of reconciling the individual wishes and desires of parents and adults with autism with the long term goals of autism advocacy, which has helped me better understand the relevance.

The problem Mike raises shows up in many different domains and is known as the tragedy of the commons.  Simply stated, tragedy of the commons is:

a dilemma in which multiple individuals acting independently in their own self-interest can ultimately destroy a shared resource even where it is clear that it is not in anyone’s long term interest for this to happen.

The anecdote post references a story on washingtonpost.com discussing the Democratic primary race between Barack Obama and Hillary Clinton and the results of a study done by social psychologist W. Keith Campbell.  From the study:

… because the volunteers did not know whether their kindness would be reciprocated by others or exploited by competitors, people raced to cut as much timber as they could and quickly razed the forests to the ground. Groups with volunteers more willing to think about the collective good preserved their forests longer. But selfish people within these groups had a field day exploiting the altruists — and the forests perished anyway.

Campbell’s experiment is particularly relevant to politics, because he found that groups with a larger number of narcissists — people with an inflated sense of their own importance — tended to raze the forests much faster than groups in which people felt less self-important. Politics, unfortunately, happens to be a domain that self-selects people with an inflated sense of their own importance.

Political scientist Edella Schlager offers the following as a solution:

… the only way to prevent tragedies of the commons is to set up structures in advance that reward long-term thinking and punish short-term selfishness. This happens mostly among competitors who share long-term interests and have social relationships of trust: If you and I are Maine lobstermen, we are likely to agree to set up limits on the overall catch each year because we see our future, and our children’s future, inextricably linked. In the absence of trust and long-term relationships, the only way to prevent these tragedies is to have an outside regulatory agency step in to establish — and enforce — limits.

Sadly, many of the “competitors” in the autism community (communities?) don’t seem to think we share any long term interests, despite the fact that I’m sure we probably do.  Nor are there too many “social relationships of trust”; even here on the Hub there is a general undercurrent of mistrust between adults with autism and non-autistic parents, stemming I think from the lack of shared long term interests mentioned above.

On the other hand, it is easy for the Hub’s “competitors”, as exemplified by the folks at Age of Autism, to avoid the TOTC:  they speak with a single voice (”Vaccines are bad”, “Vaccines caused my kid’s autism”, “Neurodiversity believers are deluded and in denial”) and trust that everyone on “their side” will stay on message.  There are, of course, some more reasonable voices among the bio-med group, but it is the vocal (apparent) majority that makes the most noise.

Mike is on the right track with his proposed Alliance for Autism.  The first step is to figure out what our shared long term interests are, and from there work to build the trusting social relationships that we need to move forward.  Who knows, we might even find that we have some common ground with our “competitors” in what we want for our kids when they become adults.  Wouldn’t that be something.

I’ll kick it off with a couple of my own long term interests and goals:

• My son receives an education (from me, the schools, his peers) that allows him to participate in the world around him to the extent that he chooses to participate.
• The general public becomes more aware that adults with autism are adults first, that they have dreams, desires, and interests just like everyone else, and should be allowed and empowered to pursue those dreams, desires, and interests.
• A legal environment that enforces the above, when necessary, in the workplace and other areas where autism, and other disabilities, are treated with disdain and disrespect.

As the folks at Age of Autism have pointed out, Rep. Carolyn Maloney (D-NY) is hosting a special briefing next Wednesday (24 September 2008) for Members of Congress and their Staff to update them on recent developments in the vaccine-autism debate.  I took their advice (kind of) and sent my Senators and Congressman a quick note about the meeting:

Dear …  ,

On Wednesday 24 September, Rep. Carolyn Maloney (D-NY) is hosting a special briefing for Members of Congress and their Staff to update them on recent developments in the vaccine-autism debate.  As the parent of an autistic son, now 17, I’m asking that you not spend the valuable time of you or your staff at this meeting.

As you may have guessed, I don’t subscribe to the belief that vaccines, or anything in them, cause autism. All of the science to date has found no causal link between the two, and my own personal experience does not lead me to think otherwise.  (My other son, age 15, is not autistic.)

I do encourage you and your staff to become involved in the discussion about autism.  I believe that the most effective use of your time and influence would be in the areas of improving availability of services for children with autism, education and support for parents of autistic children, and – perhaps most importantly – improvement of services and support for adults with autism.

Thank you for your consideration of this matter.

Sincerely,

Or in other words:  Don’t waste your time on this, there are other more productive things you could – SHOULD – be doing for children with autism, their parents, and adults with autism.

PLEASE CONTACT YOUR US SENATORS (HERE) AND MEMBERS OF CONGRESS (HERE) AND URGE THEM TO NOT ATTEND OR SEND A STAFF MEMBER TO THIS MEETING ON CAPITOL HILL.

In a recent post suggesting the formation of an Alliance for Autism, Mike Stanton raised a few issues on which parents and adults with autism as a group may need to come to some sort of agreement.  One of those issues are the questions:  Is autism a disability or a difference? Can it be both?

More than just an academic debate, the answers to these questions have very definite real world consequences.  Disabilities are covered by various laws, policies, etc. etc..  Differences, on the other hand, are not.  This was brought home to me when I read the aspie:talk post an adult trying to get accomodations. Although his her issues were more related to not having an official diagnosis, the situation presents a good point of comparison.

If treated as a disability, supported by the proper diagnosis, then the company needs to provide appropriate accommodations to allow the employee to work.  If, however, autism is seen as a difference, then the company is under no obligation to provide this employee any unique accommodation.

In a comment to the post, Al had this to say:

i would lay out what accommodations you need in the workplace without referring to the medical issue… which is unsolvable at this point. just state what you need item by item as matters of personal preference, in terms of “developing a comfortable working environment” and “ways they can help you be happier and more productive.” many of the social problems you have are probably going to exist at any workplace, i would guess, i’m not sure to what extent a diagnosis would alleviate the “micro-social” situation.

Obviously, this is an area where parents and adults with autism may have some differing opinions.

Difference, or disability?  What do you think?  Me, I’m still trying to figure out what I think.

I am not grieving, despite the concern (?) from CS in a comment on my most recent post.  (Nor am I simply in denial as I’m sure some will tell me about my thoughts on autism and raising an autistic child.)  I have written about grief and autism before, though, and this seemed like a good time to dust that post off and repost it.

From April 2006, Autism and the 5 Stages of Grief:

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For many families, a diagnosis of autism in a child brings about a profound sense of loss. Since most people don’t actively educate themselves about autism before the diagnosis – let’s face it, no one thinks it can happen to them – most of what they know comes from what they may see, hear, or read in the media. Unfortunately, the vast majority of stories about autism in the media are about the ‘devastation’ of autism, of how kids are ‘lost’ in a strange and terrible world away from society.

As a result, I think that many people who find themselves facing an unexpected diagnosis slip into the 5 stages of grief. The link provides some details on the 5 stages, including some discussion of why some think they are not valid, but here are the 5 stages themselves:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

These are the stages, as I understand it, that a person will go through if left on their own, if they don’t receive any support or gain any understanding beyond the feeling of loss. One of my goals with Autism for Parents [ed: an unfortunately now defunct site] is to present an alternative to these ‘default’ stages that treat an autism diagnosis as a devastating loss with a series of steps that parents can take to fully understand their situation and go beyond mere acceptance.

Here are the steps I’ve come up with.

• Denial – unfortunately, unavoidable [ed: at least until everyone accepts that it could happen to them and/or that it is not a bad thing to have happen]
• Confusion – again, unavoidable
• Understanding – the process a parent takes to understand the situation. In this step, will answer the questions that come from the confusion stage.
• Plan – based on understanding gained in previous step, make a plan for your life ahead (something parents do with all kids)
• Act – live life to the fullest, adjusting the plan as your understanding grows.

I’m interested in any feedback to help refine the individual steps, or the overall concept itself. I’ll explore each of the steps in a bit more detail in subsequent posts and will consider all comments/suggestions.

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Another comment, this one from Phil Schwarz, talks about the real need for grief in some situations, but also reminds us of what it is we are really grieving.  Phil references Jim Sinclair’s Don’t Mourn For Us, which I discovered, and wrote about, along with Phil’s Cure, Recovery, Prevention of Autism? not long after writing the “5 Stages” post.

To me, the most important stage for parents is Stage 5 – ACT.  In this context I don’t mean act in a “big” way, trying to change the world while all but ignoring your child.  I mean act in a “small” way, as a parent, doing your best with what you’ve got and raising a happy, confident, and self-assured child that becomes a happy, confident, and self-assured adult.

Or, as Phil so eloquently put it in his comment:  It’s what you do beyond the grief that matters.

This is the fourth of three posts of excerpts from Elizabeth Moon’s novel The Speed of Dark. (Part one – How normal are normal people?,  part two – What does it meant to be “me”?, and part three – Do I need to be healed?)

Like any good story, The Speed of Dark has an antagonist that provides the main character his dilemma and challenge.  I thought it might be worthwhile to share some of Mr. Crenshaw’s thoughts on Lou and his co-workers.

“Your guys are fossils, Pete.  Face it.  The auties older than them were throwaways, nine out of ten.  And don’t recite that woman, whatever her name was, that designed slaughterhouses or something —.

“One in a million, and I have the highest respect for someone who pulls themselves up by their bootstraps the way she did.  But she was the exception.  Most of those poor bastards were hopeless. Not their fault, all right? But still, no good to themselves or anyone else, no matter how much money was spent on them. And if the damned shrinks had kept hold of the category, your guys would be just as bad. Lucky for them the neurologists and behaviorists got some influence. But still…they’re not normal, whatever you say.

…

“The law does not require a company to bankrupt itself. That notion went overboard early this century. We’d lose the tax break, but that’s such a tiny part of our budget that it’s worthless, really. Now if they’d agree to dispense with their so-called support measures and act like regular employees, I wouldn’t push the treatment – though why they wouldn’t want it I can’t fathom.”

As you might be able to gather, Mr. Crenshaw’s motives for pushing a cure are somewhat less than altruistic.  But it is quite obvious what he thinks of autistics.  Not all that different from how many view autism, and autistics, today.