Putting away my 29 Marbles

I think this has been a long time coming, but it is finally time to retire the blog “29 Marbles.”  There are several reasons behind this decision, but the biggest is that I’m tired of writing about autism separately from everything else, as if it is something apart from the rest of my life.  It’s not.

I’ll still be writing about autism, with the same random frequency as I do here, on a new blog I’ve started called Theoria cum Praxi.  Here is the direct link to the autism category.  If you subscribe to the RSS feed and want to continue to receive updates, you don’t have to do anything.  I’ll be updating the feed info at Feedburner within the next couple of days.  Of course, feel free to subscribe to the full feed at http://feeds.feedburner.com/TheoriaCumPraxi.  This new blog will also fill in for the also retired No Straight Lines, so I will be addressing the life/work topics from there as well.

I hope to see you all there.

Advocates and allies

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:

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

Autistic or introverted? (Or both)?

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?

Brain damage

One of my favorite Pink Floyd songs is Brain Damage from the classic Dark Side of the Moon.  Roger Waters says he wrote it in response to the pressure he felt as a teenager to fit in, to not be so different.

= = == === =====

The lunatic is on the grass.
The lunatic is on the grass.
Remembering games and daisy chains and laughs.
Got to keep the loonies on the path.

The lunatic is in the hall.
The lunatics are in my hall.
The paper holds their folded faces to the floor
And every day the paper boy brings more.

And if the dam breaks open many years too soon
And if there is no room upon the hill
And if your head explodes with dark forebodings too
I’ll see you on the dark side of the moon.

The lunatic is in my head.
The lunatic is in my head
You raise the blade, you make the change
You re-arrange me ’til I’m sane.
You lock the door
And throw away the key
There’s someone in my head but it’s not me.

===== === == = =

As parents we have a responsibility to our children to help shape who they are, but more importantly to help them figure out who they are.   Autistic or not, we are who we are.

So you want to be interviewed about autism…

Over the past couple of months, I’ve noticed many complaints from adults with autism that they are tired of non-autistics speaking for them.  The fact that I’ve only recently really noticed these complaints doesn’t mean the complaints haven’t been around longer than that, nor does it mean that the complaints aren’t valid.  There are many cases of non-autistics trying to say what they think is best for autistics.  (I don’t think I need to go into specifics.)

However, this is a distinct problem from something that has come up more recently:  complaints about the media choosing to interview non-autistics instead of autistics when producing stories about autism.   The most recent example of this is the reaction to Kristina Chew’s interview with Newsweek on the subject of parent’s reactions to “political pandering” to parents of disabled children.

Now I don’t know how Newsweek chose Kristina for the interview, but I have the feeling it had a lot to do with the fact that she blogs about her experiences parenting an autistic child. Not only does she blog, she blogs extensively, prolifically, and very eloquently.  In short, the interviewer already had a pretty good idea of what Kristina would say in response to certain questions, and in those cases where she didn’t she had a pretty high level of confidence that Kristina would come through.   Reporters are like anyone else:  if there is an “easy” way to do their job and a “hard” way, they will choose the easy way.

If you would like for reporters to seek out your opinion on something you care about, the trick is to make them see you as a way to make their job easy.  Blogs are a great tool to achieve this.   If you want to get your word out about being the parent of an autistic child, write about being the parent of an autistic child.  If you want to get your word out about being the autistic parent of an autistic child, write about being the autistic parent of an autistic child.  If you want to get your word out about life as an autistic adult, write about your life as an autistic adult.

It’s as easy as that.

Monday morning lunatics

Another song that brought my experiences with autism to mind, Dream Theater‘s Solitary Shell, from the Six Degrees of Separation CD.

= = == === =====

He seemed no different from the rest
Just a healthy normal boy
His mama always did her best
And he was daddy’s pride and joy

He learned to walk and talk on time
But never cared much to be held
And steadily he would decline
Into his solitary shell

As a boy he was considered somewhat odd
Kept to himself most of the time
He would daydream in and out of his own world
But in every other way he was fine

He’s a monday morning lunatic
Disturbed from time to time
Lost withing himself
In his solitary shell

A temporary catatonic
Madman on occasion
When will he break out
Of his solitary shell

===== === == = =

I have no idea if this song was written to be specifically about autism, but I doubt it.  It could just be about an extremely introverted kid.

The question that pops to mind:  Why does the child in the song need to “break out of his solitary shell” at all?

My del.icio.us autism

Quite often as a I read stories and blogs about autism, I find something that I want to return to later or that I want to note with a short comment but don’t have the time nor inclination to blog.  So I’ve been trying to use Delicious, the social bookmarking site, to help me do that.  Because I thought that the people who subscribe to and read this blog might be interested in what I’m bookmarking, I used the Link Splicer feature in FeedBurner to include my bookmarks in my FeedBurner feed for this blog.  Which worked fine, except….

I had failed to take into account how this would impact my feed’s presence on the Autism Hub‘s own feed.  Apparently,  because the Hub feed is set up as an aggregator and not RSS a simple link to the site I bookmarked – instead of a link that showed the bookmark link along with my comments – is what Hub subscribers saw.  (I must admit, I never click the links for my own posts in the Hub feed ;-)  So, I’ve disabled the Link Splicer feature to alleviate this problem.

If you are interested in my delicious autism feed, there are three ways you can see it:

  1. I have added my delicious autism feed as a widget on the blog site, so you can see it there.
  2. You can visit my delicious autism tag page.
  3. You can subscribe to the my delicious autism RSS feed, and get it in your feed reader of choice.

You may also be interested in the complete set of autism tagged bookmarks, too.