Thursday, September 26, 2013

Never is a Promise

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"


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.



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."



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

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.

Thursday, September 5, 2013

I am a Rock

My son goes through a lot of obsessions (most kids do). A television show, or book, or video game, or song that dominate their life and thoughts.

As Jack gets older, the length of time of these obsessions become shorter and shorter.

Here's a list of a few things, because of my son, I wish I knew less about:

The Incredible Hulk
Harry Potter
Gangam Style
Minecraft parody songs
The Avengers
Collecting Rocks
Collecting garbage
Flipping book pages
Angry birds
Jurassic Park

Those are all in the last year.

Some are healthy, some are not. Some of the more "violent" obsessions had to be taken away (namely the incredible hulk) because aggression and rage became a little too much for us and/or the school to handle. I wrote perhaps my most insightful blog ever about the incredible hulk, my son, and an OT assignment about a year ago... worth a read HERE.

Collecting rocks was an interesting one. Jack really wanted to be a scientist, so he would gather rocks around the schoolyard and bring them home to "study". It became clear to me that this was a coping technique. He gathered the rocks to ground him. If he was nervous, intimidated, scared or anxious, he would find a rock... something that stayed constant over hundreds of years. Something that was unchanged in the face of adversity. Something that was the result of time and pressure.

The tougher the day, the more rocks came home.

But he grew out of that one, too.

Right now, we're on Star Wars (the first trilogy, thank you very much). But ever so briefly, and possibly still around, Jack has taken an interest in My Little Pony.

We have a 3 1/2 year-old daughter, Jade, who is a big time My Little Pony fan. She has a crapload of toys and watches all the videos she can find. Jade idolizes her brother... sure there are a lot of "don't touch my shit!" arguments, and the such, but she adores him. He rarely seeks her out to play... and if so, it's usually through something destructive (Like chasing the cat, or jumping on the couch)... but he does dig her.

We went on a quick family getaway this past weekend to San Diego and paid the extra money for a suite at the hotel... Jack and Jade got their own room! And I came out to find this in the morning.

And Jack asking Jade questions about who was who in "Canterlot" or "The Crystal Empire" (or wherever the hell those ponies live).

The rest of the trip was fine... the expected fighting and meltdowns. The zoo was nice. Dinner was fine. But I wanted to capture this moment. I don't want this moment to end. This is an obsession I hope hangs around a very, very long time.

We're going through some major changes. We're phasing out in-home behavior therapy, moving into social groups, starting a new school, and becoming more and more aware of meeting the attention needs of our daughter.

Jack has been a champ through it all. Few behaviors at the new school. Doing his homework. Even playing with a friend or two. Couldn't be more proud of all his hard work.

I hope Jack can see how much his sister adores him. I hope he is using her as his "rock" to transition. I hope he is trying to find a common ground (My Little Pony) to reach out to her. I have all these high hopes that their relationship can blossom into something mutually beneficial. I hope she can become his "rock"... something unchanging in the face of adversity.


Things are quiet and I'm doing laundry this morning.

And I found this.

A rock in the pocket.

Has he been gathering rocks again? I went to his nightstand (his "treasure chest") of his most favored items.

Yep. He's been collecting rocks again. A few strings, a few bottle caps, his JPL tour nametag... and Pinkie Pie.

Jack, a jade is a kind of rock... and she will be there for you.

Thank you for reading.

*** On a side note... I've spent about 4 days looking for that fucking Pinkie Pie doll to the wailing of my daughter who insisted it was somewhere in the house.