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

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.

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

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?

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.

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.

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?

Emperors uphold censorship,
But extreme repression leads to extreme reaction.
Individualists believe in freedom,
But extreme expression leads to extreme reaction.

To answer the question I posed in my last post, “No, I don’t believe the creators of pop-culture have a responsibility for limiting their content to what is ‘acceptable’.” The nature of art is individual expression, and in that the ‘artist’ is responsible only to himself.

As the meditation above states, though, this unlimited expression might result in “extreme reaction.” Artists must accept the consequences of their expression. If they offend or anger a group of people, or even individuals, they should expect those people to express their own feelings. This could be a blog post, a letter to the editor, or a boycott.

In the case of Tropic Thunder, I don’t agree with calls for the film to be changed or for it to not be shown. That is an extreme on the “censorship” end of the spectrum. I do, however, support those who call for a boycott or other action against by individuals or groups about the film. That is an acceptable reaction to the individual expression of the film-makers.

As much as we may wish it were not so, we can’t ignore the power of pop-culture and the influence it has had, and will continue to have, on the public perception of autism.

(You may have also seen a version of this post earlier this year, when I reposted it in the wake of the ABC Eli Stone story. And, no, I’m going to repost the whole thing again ;-)

In the article Film comedy courts controversy; mental disabilities heart of issue, Jenny Goode, chief executive officer of the Betty Hardwick Center, has the following to say about pop culture::

“What we need to consider as responsible adults is that things that occur in pop culture, movies, television and books are things that people do use in some sort of layman’s way to educate themselves or to learn from or emulate in their own lives,” she said. “These things are repeated by young people and adults alike.”

These two quotes together brought to mind those immortal words of wisdom from Peter Parker’s Uncle Ben (yes, another somewhat gratuitous pop culture reference): “With great power comes great responsibility.”

Do the creators of pop culture – or any kind of “culture” – have a responsibility to wield their power responsibly?

Or is it our responsibility as consumers of pop culture to understand what it is that we are consuming and put it into the proper perspective for our own lives?