29 Marbles

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:

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

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.

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

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.

It’s been a busy week or so, and I am still pulling together a review of The Speed of Dark, but I jotted a note to myself to blog this last weekend following the Republican National Convention and all the furor surrounding Alaska Governor Sarah Palin and her newborn son with Down’s Syndrome.

Over the weekend, and with the news about Gov. Palin still fresh and in rotation, my iPod mix shuffled itself to Sinead O’Connor’s version of Phil Coulter’s  “Scorn Not His Simplicity”, written about his young son with Down’s Syndrome.

= = == === =====
See the child
With the golden hair
Yet eyes that show the emptiness inside
Do we know
Can we understand just how he feels
Or have we really tried

See him now
As he stands alone
And watches children play a children’s game
Simple child
He looks almost like the others
Yet they know he’s not the same

Scorn not his simplicity
But rather try to love him all the more
Scorn not his simplicity
Oh no
Oh no

See him stare
Not recognizing the kind face
That only yesterday he loved
The loving face
Of a mother who can’t understand what she’s been guilty of

How she cried, tears of happiness
the day the doctor told her it’s a boy
Now she cries tears of helplessness
and thinks of all the things he can’t enjoy

Scorn not his simplicity
But rather try to love him all the more
Scorn not his simplicity
Oh no
Oh no

Only he knows how to face the future hopefully
Surrounded by despair
He won’t ask for your pity or your sympathy
But surely you should care

Scorn not his simplicity
But rather try to love him all the more
Scorn not his simplicity
Oh no
Oh no
Oh no
===== === == = =

I first heard the song many years ago when O’Connor first released it, and if you are a parent of an autistic child hearing it for the first time you can imagine my reaction.   I’d love to hear yours.

Frequent readers of this blog know that in my attempt to understand autism better, I have a tendency to see connections in things that aren’t always directly related to autism.  A lot of times this will come in the form of a song, a TV show, or a main- or sub-theme in a movie (like the X-Men trilogy).

My post yesterday brought to mind Bruce Hornsby‘s (excellent) song, The Way It Is (from the album of the same name).

They say, “Hey little boy you can’t go
Where the others go
‘Cause you don’t look like they do”
Said, “Hey old man
How can you stand to think that way
Did you really think about it
Before you made the rules”
He said, son

That’s just the way it is
Some things will never change
That’s just the way it is
Ah, but don’t you believe them

“Don’t you believe them.”  Don’t listen when someone tells you that you can’t change things, that this is how it was meant to be.  Nothing is “meant to be”, that is the wonder of being human, that we determine what is for ourselves.

Well they passed a law in ’64
To give those who ain’t got a little more
But it only goes so far
Because the law don’t change in another’s mind
When all it sees AT the hiring time
Is the line on the color bar

That’s just the way it is
Some things will never change
That’s just the way it is
That’s just the way it is, it is, it is, it is

Note that in the chorus after the last verse, Hornsby never says “don’t you believe them”.  I don’t know if this was intentional or not, but it is definitely true.  You can make a law, you can tell people what they have to do, but you can’t tell them how to think about others.  That takes education, persistence, and persuasion.

And that, I believe, is the challenge we all face in gaining more understanding and acceptance for autistics, indeed for all people who are different.

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.

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

In this excerpt, Lou is considering what it might mean to be “healed”:

If my self definition is limited and rule-dictated, at least it is my self-definition, and not someone else’s. I like peppers on pizza and I do not like anchovies on pizza. If someone changes me, will I still like peppers and not anchovies on pizza? What if the someone who changes me wants me to want anchovies…can they change that?

…

Asking if I want to be healed is like asking if I want to like anchovies. I cannot imagine what liking anchovies would feel like, what taste they would have in my mouth. People who like anchovies tell me they taste good; people who are normal tell me being normal feels good. They cannot describe the taste or the feeling in a way that makes sense to me.

Do I need to be healed? Who does it hurt if I am not healed? Myself, but only if I feel bad the way i am, and I do not feel bad except when people say that I am not one of them, not normal. Supposedly autistic persons do not care what others think of them, but this is not true. I do care, and it hurts when people do not like me because I am autistic.

As I finished up my initial draft of this, I came across Estee’s post What do we think we know? We know what it is like to be us, we know how to do things, we just can’t always explain it.

Hopefully I’ll have my full review done by the end of this (thankfully long) weekend.

One of the key sub-plots in Elizabeth Moon’s book The Speed of Dark involves some corporate intrigue and an almost stereotypical management vs. labor conflict.   At the heart of the issue is a question of the efficiency vs. effectiveness of the autistic workforce.   It’s probably because of my recent reading of the book that Jack Vinson’s post People still say these things? caught my attention.  (Attention, what attention?)

In that post, Jack references a quote that “amazes me every time I see it used in real life”:

Regrettably far too many executives remain firmly convinced that the only way to increase productivity is for their employees to work harder or faster. A chief executive in Northern Ireland was quoted in his company magazine as saying; “Any employee not producing value-added work all the time is a waste”. This attitude stems from the continued misunderstanding of productivity…

As I read this quote, what occurred in parallel in my thinking was the following:

Regrettably far too many people remain firmly convinced that the only way to be of value to society is to do more faster. A ‘normal’ person might say; “Any autistic (or other disabled person) not keeping up with me and everyone else all the time is a waste”. This attitude stems from the continued misunderstanding of an individual’s value to society.

If you are different, your difference has to be accounted for.  Doing that takes time, throws a proverbial wrench in the works.   And people with a plan to follow and schedule to keep don’t like those wrenches.

I don’t know where this attitude has come from, but I’d guess it has its deep roots in the Industrial Revolution and nourishment from the teachings of Scientific Management, Business Process Re-engineering, Total Quality Management, etc ad infinitum.

The mentality of work in our society has permeated our mentality of community.

This is the second of three posts of excerpts from Elizabeth Moon‘s novel The Speed of Dark. (Part one – How normal are normal people?)

In this excerpt, Lou is considering what it means to be “Lou”, and how he would be different as an adult if he had been different when he was younger.

If I had not been what I am, what would I have been? I have thought about that at times. If I had found it easy to understand what people were saying, would I have wanted to listen more? Would I have learned to talk more easily? And from that, would I have had more friends, even been popular? I try to imagine myself as a child, a normal child, chattering away with family and teachers and classmates. If I had been that child, instead of myself, would I have learned math so easily? Would the great complicated construction of classical music have been so obvious to me at first hearing? I remember the first time I heard Bach’s Toccata and Fugue in D Minor … the intensity of joy I felt. Would I have been able to do the work I do? And what other work might I have been able to do?

It is harder to imagine a different self now that i am an adult.

This particular scene resonated with me as I have had these same thoughts, from a parent’s point of view, as I’ve watched my son grow from a toddler to a 17-year old. (For examples, see Thoughts on curing autism and Whose decision is it?)

For some similar thoughts from a current day, real person with Asperger’s check out Steve’s post Marching to her own drum.

Next:  Do I need to be healed?