I've been thinking of giving up the blog for the past couple of months. I have. Mostly because I feel I have little to say, that hasn't already been said before (and often times much more eloquently). Let's be honest, there are hundreds, if not thousands, of autism parent blogs... and we all say the same thing, more or less. Every blogger has the "difficulty transition to a new school", or the "stares in the grocery store", or "My reaction to the diagnosis", or the "I hate insurance companies" post... and some of them are amazing, touching, insightful, or simply beautiful... so, why on Earth would anyone want to read me write about the same old things?
So, to my friends and family who know my family, and to those readers that don't, I offer you a story and thoughts that I've never read about before.
A while ago, I participated in debate about what kind of disorder autism is. Is it a genetic disorder? A behavioral disorder? A Social disorder? A Mental disorder? A processing disorder? etc. And the answer is all or any of the above. My friend asked me what I thought.
"Autism, for my family, is a perspective disorder"
Interesting.
Jack does not have the ability to see the world through another's eyes. He lacks empathy (not to be confused with lacking emotions. He has a great and healthy relationship with his emotions as they relate to him). He does not disregard other's emotions (that would be a psychopath), he truly does not even recognize they exist.
There is a philosophical movement for that - Solipsism - the belief that you are the only true being in the world.
If only there was a diagnosis for that... something that meant "self"-ness... or maybe something from the Greek...
"Autism" - from the Greek. Autos - (Comb. form) for "Self" + ismos suffix of action or state.
Selfness.
***
The ability to recognize that other people have their own lives is an important developmental milestone. The ability to know that Grandma is somewhere doing something even though she is not in front of you comes in a typical developing child around 2. Autonomous Beings are indeed that - Autonomous. Around 3, a typical child develops that, not only are there other Autonomous Beings, but they are also Sentient Beings, they not only exist beyond me, but they think and feel beyond me.
Jack and Jade (3 1/2) are playing with the cat. A tail gets pulled and the cat runs away. The 3 1/2 year-old says, "Don't pull Corky's tail. He doesn't like that". A child picks his nose constantly. "Don't do that in class, the other kids think it's gross". A group of bullies laugh at a child's wardrobe, "They're making fun of you for not having any money, and the other kids think that is funny".
These things mean nothing to the child with perspective processing disorder.
I went to a "parents group" meeting for Jack's social skills therapy group on Monday. The founder of the company gave a presentation on Bullying, and what we as parents should do about it... great presentation, btw. It covered what to do when your child is being bullied, and, consequently is the bully. And I asked...
"What about when your child has no idea they are being bullied? I understand if someone is hitting you or doing something physically irritating the desire for them to stop, but what if you have truly no idea that you're being made fun of. To the point that you have no idea you are even entertaining to these misguided bullies. What if you don't have the ability to take their perspective into account?"
Another parent chimed in... "Yeah, what if your child is a psychopath and just doesn't get it"
And the leader responded: "That wouldn't be a psychopath, because a psychopath recognizes others, but disregards them. What you're describing is something we call autism."
***
2013
Autism - noun - a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment: now considered one of the autism spectrum disorders.
(Courtesy of Dictionary.com)
1912 (when coined by Swiss psychiatrist Paul Bleuler)
Autism - noun - Self-ness.
Did the ancient Greeks and turn of the century Swiss have something figured out?
***
In today's world, autism means so many things. As it works today, autism is not really a diagnosis... it's a collection of presentations of any developmental delays or disorders coupled with poor social skills.
In 1912, it meant self-ness.
***
Jack may never have the ability to take another perspective. He may never understand why he is being bullied. He may never know why a boss or teacher does or doesn't like him. He may never know why a friend likes him or hates him. He will probably never have to endure cattiness or petty arguments or understand passive-aggressive silent treatments.
But he may also never understand how much I love him. He may never understand what I've given up for him. He may never understand how proud I am of him.
And that breaks my fucking heart.
***
On Saturday morning, I took my baby girl to a birthday party and Jack stayed home with mom. I got a phone call from Jack. He needed to tell me about the dream he had. He told a different story of his dream to his mom, but the plot points were the same... the important stuff.
"Daddy, I had a dream where we went on a roller coaster, and then we went on it again, and then you got mad at me so I went on it another time by myself and I fell out and got hurt because you were mad at me and you didn't protect me."
And finally...
"Daddy, are you mad at me?"
***
It's in there. Jack, at least subconsciously in dreams, knows that I can get mad at him. He knows that if I am mad at him, I treat him differently... my perspective, not his.
And he knows that I protect him.
And he knows that I can take that away.
And that breaks my fucking heart.
***
But he knows! Jack has the ability to learn, to develop, to retain information, he has a healthy relationship with his emotions, he is one endearing little fellow. Since Monday, I have drilled perspective taking into this boy. Every conversation is followed with "how does that make him feel?"
And last night...
"Jade, don't bother the cat. He's relaxing and you don't want to make him mad"
Is it a true understanding of perspective taking, or rote repetition?
Does it matter? That's your perspective.
***
They say Jack will never understand perspective taking.
But "Never is a promise, and you can't afford to lie"
We'll keep working on this, my boy. We'll get there. I will never stop fighting for you and, together, we will open the firmament.
And then, you will know how celestially proud I am of you.
If you made it this far... I thank you eternally for reading.
People in general have a perspective taking disorder. Most Non-autistics can recognize the emotions on a person's face, but cannot take into account the processes and feelings that are being expressed. They look at things from their own angle, and cannot directly respond.
ReplyDeleteAutistic people kind of have it worse. This is because their brains can't take on too many topics at the same time. Facial processing at the same time as lingual processing? BAD deal, can be very tiring, very fast. However, their strength is their ability to focus intensely, and thus, to learn more of a given topic when it's interesting, and taught well.
I seriously believe that anybody can develop a great deal of emotional empathy, as well as cognitive empathy. To suggest otherwise... Well, why on earth would you do that?
This was so powerful. Please don't stop writing! I read you and I am affected by what you say. I feel like a drop in the bucket of autism bloggers as well, but I tell myself I write for me and my family, not for the fans. That usually helps me find my center again. I hope you don't give it all up. The world needs your perspective, too!
ReplyDeleteWOW!!!!!!
ReplyDeleteThis is incredible
ReplyDeleteBTW TAWL sent me
ReplyDeletePlease, please keep writing (yes, I know this is an older post). Most autism blogs are for children who are more severe, nonverbal.....and I need more parents and caregivers to speak about this invisible special need that is high functioning autism. Our 10.5 year old with HFA.....we can't figure him out. Well, we can, but we can't. The thing that is missing is that connection between "knowing what to do" and the application. We did the medication route with no success. We are still looking for therapists of all kinds, but the resources are scarce in this area unless we want to drive over 3 hours one way. That's a little impossible with 2 other autistic children. I've been cramming in a ton of your posts lately (thanks to Autism Daddy for linking to you the other day on FB) because they are saying what I've been going through for years. Thank you for your voice. Your perspective. Your son's perspective.
ReplyDeletePlease keep writing.