Who makes these rules?

My 5 year old has a plan.  

You see, she knows that she is a bit different than most.  In fact, she expresses a “tortured” feeling because she already feels that she has to spend so much effort to explain herself to peers. It is “tiresome.”  

So, of course, she has a plan to figure out if you are her friend or not.  Have no fear, it is a simple craft project. You have probably already done it.  Your supplies are paper, glue and cotton balls.  Your charge: make a snowman. 

Go ahead, visualize it. We will wait.  Yes, this is the test.  I’m going to guess you came up with something like this:

That’s OK. I did too.  Let’s call it years of conditioning. We've all seen and probably made this craft.  This is how it is done.  Not for my 5 year old.  She made hers like this:

Not only is it the cutest (mom brag), but  she can’t understand why on earth you all think it is OK to do it the other way. As she sees it, the quick "will we get along" test is if you made your snow man like hers w/o influence of instructions or her creation.  After all, snowmen don’t lay on the ground.  They are vertical objects. They all are.  Simple right?  It is likely that you can now see why her way might be the most logical way, the most realistic representation. You build a snowman by stacking one ball on top of the other. Concise. Precise.

These are the types of mis-cues that happen all of the time with some kids.  I want to say with kids with ASD, or PDD-NOS, or Autism, or whatever… but I’m not actually an expert, I just play one at home. But, it does help explain why some kid in your child’s play group may unexpectedly get frustrated. 

As a child, you are given a task.  You take the supplies, and create your vision of the task with great attention to detail and realism.  You look up, and suddenly, everyone else has done it the same way.  Not only have they done it the same way, they all seem to have done it the wrong way.  You want to tell them, you want to fix it. You want them to do it “right”, just like you did it “right.” How strange. You are all alone in your snowman creation, but you are SURE that you made the most realistic one.

It feels so confusing.  I have been there.  In travel, in class, in many situations where I have done something and it seems like the record scratches, the entire room looks at you and there you are, fully confused at why the world has taken this moment to stare at you.

This happens to my 5yo day after day.  She is creative, kind, well meaning, curious and energetic.  But she runs into things like this.  We intentionally practice interactions like these at home, at school and with professionals. To practice, she needs to engage in daily life, find the moment where she is doing something outside of the social norm and pick it apart, discuss it and come up with a response that fits the situation.  Makes sense.  You have heard of many social skills training opportunities for kids with ASD.  The problem? Insurance isn’t so convinced it is a good idea.

Wait, how did we go from snowmen to insurance?  Well, when the snowman disconnect happens at my house, there is kicking, screaming, melting down.  All kinds of activities that can't happen in a classroom, in a job, in life really.  So we are trying to get help, learn while the brain is young and flexible (well, as flexible as it is going to be for a girl with ASD).   So we are in a class with many other kids, doing day to day activities and addressing miscues as they come up.  It is fantastic, she is making friends and is sad to miss the class if there is a Monday off. 

And then I got a billl.  For $594.50.  That was for one month, or 6 hours of class.  Insurance had rejected it. They didn’t actually comment on the intent, need, or success.  They have simply said they would not pay for “those type of Autism treatments.”  The weird part is that my insurance will cover a professional working one on one with B doing essentially the same thing.  Talking through what to do in a situation if and when they come up.  This is fine and good, but my little lady has a substantial verbal IQ, she is logical and reasonable and can make any plan in the world with you, especially if you are an adult and follow a prescriptive set of behaviors.  

As an adult, in the snowman project, you would naturally watch the child get started on the project, and play along, but their project would just be part of your focus, you could divide your attention.  You would notice the vertical building and probably think wow, ok, I’m adaptable – let’s do it this way.  This would all happen naturally, and without words.  And suddenly, without thinking about it, you missed the discord, the point at which the teaching would begin. In context, with the kids doing what they do is where the learning happens.  Heck, it is where her life needs to happen.  But, according to the insurance company, that is just “play time” and they won’t pay the $100/hour the class costs.  Again, they will pay it in a 1:1 context.

Take another example.  B was playing with her sisters.  She was explaining to the 3yo why the blonde girl was going to sit in the pink chair.  The three year old, being 3 said no way.  Well, B had been setting this scene up for hours. Each person had a chair that matched their outfit. They each had dishes that matched their shoes.  It wasn’t just a silly proclamation. But three year olds don’t understand that.  She tried to explain. She tried to say wait, look at the other girls, look at the plan.  B tried to say have patience, the scene is set. Please don’t knock down my diorama. This all sounds like gobbledygook to a 3 year old. It sounds like a foreign language that translates to “give me your toy you baby.” I’m sure of it.  So the three year old held her ground.  And the 5 year old? She tried words, she tried patience and now the 3 year old just kicked over an hour worth of work.  So she bit her.

I was so furious. HOW CAN I STILL BE DEALING WITH BITING AT 5 YEARS OLD?! I came over. Fuming.  I took a breath.  I separated the parties and then took a breath.  B was crying.  She was hitting her head.  She said “R, I’m so sorry, will you ever forgive me. Please don’t make me play alone forever. I just don’t… I just cant… Please!”

I sat B down and explained that I can’t have biting in the house.  That I wanted to take away privilege (we were going to Costco that day, big deal), toys, give her a time out.  I explained that that is what happened when I was a kid and that I so wanted to do that now, and it would make me feel better.  I acknowledged that I didn't think it would help her to stop biting. She said: “you are right, what does that have to do with biting?”  So we sat. We talked.  I asked what she needed in those moments.  What came out was… amazing I think.

I asked her what to do to get her to stop biting. 

She said: “waive a Nürnberger sausage in front of my face. I want to bite. I want satisfaction, I want the feeling of flesh in my teeth.”  Weird. Right? I explained that I would love to stop her in the moment, but I am not always there and she has to be in charge of herself. 

She said: “Then leave meat around the house. Stacks of it in various places.” 

Me: (confused) “B. We can’t just leave meat around, it would rot. Plus, you aren't a lion.”

B: “But that’s it. I feel like a lion.  My thinking brain doesn't work at all. All I can think or feel is to close up. 

To get tight muscles, to bite.  If I could have something, something firm but squishy. Something satisfying to bite, I would bite it.  You told me that my number one job in this world is to take care of me, so I can’t hurt me.  I have to close up on something. Biting my sister makes the conversation stop. I know what will happen next. It makes the situation stop. It feels good to get that release.”

What do you say? It makes a lot of sense.  I do get that tense feeling in my neck when things aren't going my way.  My body does take over.  I flush really easily.  I cry very easily. I tense my jaw.  I can totally empathize with the physiological response to stress.  Obviously, I don’t think I am a lion, but I’m not so sure it wouldn't feel like that with the world view of a 5 year old.  What else does she know? What other people/places or things does she have to compare it to? Not much. 

I am 99 percent sure that the behavior therapist cannot get my 5yo to a place where she will feel like a lion.  B has just enough skills to navigate low level pushing and aggravation.  For an adult to get her to the place where she feels tight muscles and no thinking brain, they would have to push her in a way I would feel uncomfortable with their methodology.  It has to be a peer.  It has to be a real life situation.  So this is where I am confused: why would I, or insurance for that matter, pay for an adult to put her in scenarios that aren't true to life?  She doesn't bite adults now. She doesn't lose control with them.  It isn't the therapy she needs.

It is despicable that we live in a situation where insurance companies get to determine appropriate care. This is the third time I have had to fight to get something covered.  Mental health, diagnosis, and therapy have all been challenged because they relate to Autism.  For some reason, we allow a system where the insurance company gets to dictate that those treatments are outside of their purview.  I disagree.  I will continue to disagree.  Feel free to join me.  Is your neck tingling?  You just might be a lion.  Go get yourself a sausage.