Poetry and AS

Before my diagnosis, one misconception I always have about autism was that people with autism don't know how to express themselves really well.  Since my diagnosis, however, I realized this is not true.  I no need to look further than myself.  I can write very well on topics that I am passionate about.  Heck, I even have several of my Christian articles published in for Christians in my denomination to read.  So, there goes this theory.

Yesterday on the Asperger's online support group I go to regularly, I saw people posting poems about their experiences with Asperger's- whether they are caregivers or individual Aspies.  I am posting poems a few of the folks wrote.

"It's called Asperger's." was all I remember being told.
For weeks after I went on, life as it had always been -
People misconstruing every word;
Family misunderstanding every motive;
Or is it me?

I am told others see me and love me.
I am told others reach out to me and show they care.
I am told others, who are not like me, try to understand.
There are others are all around, everywhere I turn.
I see others. Many, many others.

I don't understand their love.
Their reaching out seems like it's forced.
When they try to understand, I do not understand.
If I am not alone, why do I feel so very lonesome?
Isolated. Forlorn. Detached.

Searching. Needing. Wanting.
Hoping. Praying. Asking.
Emotions? I don't know how to explain them.
But you do. And you explain them to me.
In language I can understand.

Then one day, dawn breaks, BRILLIANTLY.
I have a new way of understanding.
I ask "why?" of all around me.
I hear the reasons and the intent.
Then I understand the motives and the heart.

You say, "I love it when you visit."
I feel something uncomfortable and unsure.
I ask why. You explain that you are uncomfortable,
Not because of me, but because of you. You love me.
You don't like how you feel about yourself when I am near.

I awaken your sense of something more.
I remind you that you are great and must choose.
I speak with you and you feel a desire to change.
I share my thoughts and you desire to be better.
You tell me it makes you feel inferior.

Then you say everything is not my fault.
You tell me your insecurities are not my own.
I feel them, so they feel like my own.
But you are right, they are yours.
Now I hear your words and I understand.

What you feel is different than what you say.
But it is not because you are lying.
It is because you love me so much -
You choose to be uncomfortable WITH me,
Rather than be at ease without me.

Wow. I UNDERSTAND YOUR LOVE.
Your reaching out IS forced - but not because you don't like me.
When you try to understand, I understand your motives.
I AM NOT alone. I understand your heart. You are not alone.
We find mutual affection in the intimacy of our humanity.

We talk.
I feel your heart. You hear the words of my heart.
We find answers and hope.
We find connection and love.
No longer "I" or "me." But "we."

Another one...

What they don't get-
Those parents with
"NORMAL"
children,
Is the shame,
The anger,
The stupid, ridiculous, uninvited envy
That we would turn off...
If only we could.
You have no idea how we love them As much,
Or more
Than you love yours
But we are so very alone.

And so very, very angry-
And it goes against the love-
And we hate it-
As much as the 'special need' that makes our child
'Special.'

We are good parents.
We are strong because we have to be.
We are always so very alone.

And you just don't know how many strong
Natural, human, (negative)(positive) emotions we go through
Every day
So Many times
Every single day
You just don't know.

And here's mine...

"Where am I?
Why am I here?
Is this still a dream?
Hello? Hello?"
- My first words when I realize I am not dreaming.
I am now living in my dream!

I walk around and around,
Trying to find anything that will let me know where I am.
I try to use my compass,
I try to use survival skills from my life skills class,
All I see are miles and miles of nothing,
Aside from knowing that I am walking on land.

I know I got to get out of here
In search of anyone,
Preferably someone I know,
So that I can get out of this miserable place.
In search of a road,
So that I can hitch a ride back to civilization.

Day after day,
I walk without food and water.
I become weak.
I still have a will to live,
But I can only muster enough energy to crawl.
I start to fear if I will die like this.

Just as I am about to pass out,
Some strangers from a caravan offer me food and water.
Being desperate for food and water,
I happily accept and ask where they are going.
They then invite to join them.

I hesitate as I look at their faces as I thought,
"I look nothing like them.
My clothes don't even match their clothes.
I might not speak their language.
How will other people in the caravan judge me?"

Then they scan around what I have as they say to me,
"We are all different.
We all were in your position before.
You might look different from most of us,
But you have something we all dearly want.
Join us and share your wealth.
From now on we are in this forever."

One member of the caravan then takes out her flute,
As another member of the caravan taps on my shoulder,
"We sing this song over and over.
We only stop if we see someone like you.
Singing this song is important,
But helping others in need is more important.
After we get people back on their feet,
We will march on and sing this song again.
The song goes like this-

'Together we are one.
We are one for all,
All for one.
We might have our differences,
But we are all in this together.
This is a song we want all lost travelers to hear.'
Now would you join us?"

I listen to the melody a few times.
I tap my feet,
Clap my hands
Hum along,
After that I am ready to sing.

From then on,
I no longer feel alone.
I share my wealth with members of this caravan-
New and old.
Other members of the caravan share what they have with me,
As the common goal is to make the caravan experience worthwhile for everyone.

Sure, it's not a collection from a poetry convention, but they all capture one thing- the realistic experiences of how Asperger's affect our lives.  These include snapshots of the good, bad, and ugly moments of the illness experience.  This also brings up an important point about how we the OT community work with the autism community.  We shouldn't just care about working on whatever sensory areas these Aspies have deficits in.  We shouldn't just focus on transition to secondary education and/or work Aspies are eligible to be on transition teams.  Rather, we should do all that and also aware of the health and wellness/mental health component of everyone involved.  Writing poetry or blogging can be a great occupation for them- especially for Aspies to engage in.  (If the folks don't like the world to see what they are going through, you can always encourage them to share the entries privately.  Also, they can always work out the terms with you on how regularly they will update the entries.)  They can spend an hour or two to craft up a great entry (like me), or they can just spend 15-20 minutes updating what has been happening.  We then can read these entries to jot some notes, and then we can take a moment to talk about those entries.  As much as the "basic package" we offer as OT's is important, sometimes it's important to take a few minutes to discuss these entries.  Of course, if time doesn't allow, it will be good to work out with the families to discuss these entries.

Yes, it could mean that we do extra work.  But, I think caregivers will appreciate an OT professionals who not only cares about their Aspies, but also them.  After all, this is one of the ways OT can provide interventions with the autism community in a holistic way.

Until next time...