29 Marbles

I had originally planned for this post to be an in-depth look at what it means for a non-autistic person to be an advocate or ally for autistic people.  There has been a lot written on the subject over the past couple of months and I was going to use this as a way to sort it all out in my mind.  Luckily (especially for you, since this post is now much shorter), a recent discussion on this blog helped me understand it all in a nutshell.

In a comment to a recent post, CS had the following to say about the vaccine-autism debate:

The vaccine argument is causing a lot of harm I believe because it is taking our limited time we have in the news and monopolizing it with trivalities (sp?) that aren’t important for inclusion, education, opportunity, independence and safety which is what most autistic people struggle with their entire lives.

This came toward the end of a long comment discussion concerning Kristina Chew’s appearances on Newsweek.com and NBC’s The Today Show last week in which she was asked, as the mother of an autistic son, her opinions about vaccines.  (The media interest was due to the recent release of Autism’s False Prophets.)

In my original concept for this post I had considered using Kristina as an example of a good ally for autistic people, using Phil Schwartz’s list of what makes a good ally as a starting point.  CS disagrees with me, and believes that she is “not being a good ally when she does these things.”  He also uses Phil’s essay as the basis of his opinion.

Read the whole comment discussion for the whole picture, but the gist of CS’s complaint was that Kristina was being self-serving, and not being a good ally for autistics, because she engaged in – and reported on – the interest in the vaccine/autism question instead of reporting on the lack of interest that the mainstream media has for hearing from autistic people about what is important to them.

Here is an excerpt of my response to CS from that comment discussion:

The vaccine argument is causing a lot of harm, but not because those who don’t believe in a link are engaged in the argument. It causes harm because it exists. Those who try to squash the belief in a link between vaccines and autism may not be engaged in the type of activities that directly benefit autistics, but if no one puts down the belief in a link by the general – scientifically illiterate – public then many of those direct actions will likely come to naught.

The non-autistic people, especially parents, who believe in the link are not likely to listen to scientists, non-believing celebrities, or autistics when it comes to arguments against a link. Those with the most chance to sway their opinion are the parents – the non-autistic parents – of autistic children and adults.

What do you think?

And if you are autistic, who among the non-autistic do you see as true advocates, as good allies?  Are there any?  Despite what Phil tries to get across in his essay, is it even possible for a non-autistic to be an “autism advocate” or a good ally?

Update:  As a reference, here are some of the things that have influenced me over the past couple of months.  In some cases it is the post itself, in some cases it is the discussion in the comments:

• What can parents do to help the cause of autism advocacy? (me)
• So you want to be interviewed about autism… (me)
• Disability Awareness Day (NTs Are Weird)
• How To Dismiss An Advocate (NTs Are Weird)
• An Alliance for Autism (Action for Autism)
• Advocatus Autismus Diaboli: Advocacy from Hell (A Photon in the Darkness)
• Autism Hijackers? (Autism Street)

I’m sure there are more, but these are the ones that stand out in my mind.

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.

I originally posted this over two years ago, and like my last post thought it would be worthwhile to reprint it as many parents are preparing for IEPs.

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“Men must attend IEP meetings.”

This advice comes from Charles Fox at the Special Education Law Blog in a Father’s Day post discussing the role of fathers in the advocacy process. A short excerpt:

Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that “men must attend meetings.” [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother or even male co-worker or friend comes to a meeting or mediation.

His list of 16 basic principles of advocacy is well worth reading, printing out, and keeping in IEP file to help you prepare each time you must go through the process.

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I’ve also written about my own experiences as an autism dad with IEPs, and as a dad in general.   I’ve been lucky, but I know this isn’t always the case.  What have your experiences been?

I’ve posted this a couple of times before, but it seems worthwhile to post again as many of us enter IEP season.  (originally posted last August)

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As a young Army officer, I read Sun Tzu’s Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu’s demonstration of leadership ability using the Emperor’s concubines as soldiers.)

The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite:

Know the enemy and know yourself; in a hundred battles you will never be in peril. When you are ignorant of the enemy, but know yourself, your chances of winning or losing are equal. If ignorant both of your enemy and yourself, you are certain in every battle to be in peril.

Of course, this may need some translation* into more relevant wording. Such as:

Know the district administration and their stated (and unstated) goals and resources, and know your rights and what is best for your child; in a hundred IEP meetings you will never fail to get what you need.When you are ignorant of what the district’s goals or resources are, but know your rights and your child’s needs, your chances of getting what you need in the IEP are 50/50.

If you are ignorant of both the district’s goals/resources and your rights and needs of your child, you are certain in every IEP meeting to get what you get, and probably not what you really need.

Of course, this important piece of advice can just as easily be translated into the school district perspective, I’ll leave that exercise to you.

Based on my personal experience, conversations with other parents, and conversations in the blogosphere, my guess is that most people (from both sides) go into IEP meetings knowing themselves, but not their “enemy.” As a result, we often see winners and losers in the outcomes of IEPs, the result of hard fought battles that leave everyone bitter and exhausted.

What would happen if both sides heeded this advice and came in knowing themselves and the “enemy”? According to Sun Tzu, both should expect to win. But both sides can’t “win”, can they?

To that I answer a resounding, “Yes, of course both sides can win.” Wouldn’t that be a nice change?

* (If you are interested in some thoughts on translation within a language, check out my post Knowledge in Translation on my No Straight Lines blog.)

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