"She'll be just fine...."

I am fully aware that this post may come off as offensive to some people.  I have been thinking about it for days on how to word what I am trying to say without coming off like some lunatic or rabid Mom with a bone to pick.  But there are a few things that have been bugging me for awhile.

When I'm bugged, I'm supposed to write.  After 20 years of trying to get in touch with some sort of creativity (which I believed I had none), I have learned how to listen to that "nag."

So in preparation, if you've noticed some things in my post that perhaps you recognize as something you may have said, please do NOT take any of it personal.  Over the course of the past few weeks, I'm able to pull together a picture based on comments and conversations that I've had.  

You should also be aware that I'm not angry or upset.   In fact, I've really been just confused.  And so as I move through some of these thoughts I believe that I am ready to put them into words.


As more and more people have come to understand Nea's recent diagnosis of Autism, I've had a variety of responses and reactions.  I'm going to go through them one by one and share my thoughts.

"Autism?  Really?  Are you sure?  How can anyone be sure when she's 2?"

At first, this one really hurt my feelings.  Would I give my child this diagnosis for the ease and notoriety of it all?  (I know, sarcasm isn't helpful.)  But once I moved past that initial thought I realized that there is still a lot of education that needs to be done out there about Autism.  It's hard to fathom that a meltdown in a 2 y/o would be 1 clue that puts her on the ASD (Autism Spectrum Disorder) spectrum.  Let me see if I can give you an example.

When Nea has a drink with a straw, and the straw goes out of alignment with the liquid in the bottom ( that part where you start sucking air), this sends her into what I call DefCon 5.  DefCon 5 is the 22 second warning that occurs before total meltdown.  She will scream, she will kick, she will arch and many times she will hit herself in the head over and over again.  If I can't move her from that place quickly I'm going to have a full blown Hell-Raisin' meltdown to contend with.  Instead of asking me for help, or handing me the cup to help her.  She loses it.  Even when I try to explain to her that we have to do A, then B, then C and Mamma will fix it....she can't follow that process.  Can neurotypical 2 y/o's?  Yes, they can follow a two-step process easily.  Nea can't.  At least right now.  It's one piece of the puzzle for her Autism.

I say HER Autism.  Because each kid has their own version of what Autism looks like.  If I've learned anything....it certainly is that!

And for the record, she was evaluated by a team of specialists in their field of development.  And in short, we all need to understand what the definition of Autism means.


"But she's high functioning.  She'll be fine."

Now I'm never sure if they are saying that to help ME feel better or to help themselves feel better.

First, terminologies are changing.  "High functioning" "severe autism" "mild autism" "Ausberger's" are all terms we have used that are going away in 2013.  Why?  Because the fact of the matter is you have Autism, or you do not.  And ADHD is another term that is going to get included in the ASD diagnosis.  There is a lot more to this and maybe I will discuss later in another post.

Think about it for a second.  When a person has asthma, they can have varying degrees of the disease.  Some asthmatics require daily medication, some only seasonal.  Some need a breathing treatment at the sign of a first cough and some can wheeze for an hour before a neb treatment is needed.  They all have the same disease, but it manifests itself differently in each person.

The same is true for Autism.  Nea does bring a strong skill set to the table.   But her skill set lacks many things as well, that other children her age have.  The one that comes to mind is in regards to social skills.  That brings me to the last thing......

" But she is social.  I've seen her laugh. She giggles! She seems so happy."  

Social skills and emotions are different.  I think that's the first thing to keep in mind.  And helping her to understand emotions plays into social skills.  Let me see if I can come up with a scenario......

Let's say there is a kid on the playground who is crying and upset because he fell off the monkey bars.  He's got big tears, a loud cry and holds his head down in sadness.  It would be socially inappropriate for another kid to come up to that kid and say, "Hi, lets play ball!" A kid who has Autism is probably not going to understand that social nuance of "when someone is sad you do not ignore it."  A kiddo with Autism may or may not recognize the emotion.  And then he has to figure out the "underlying social rule" that goes along with it.

It seems like a silly example, but probably most of us don't realize how we learn social behavior.  It's catching the eye of someone, watching them with regard to your own behavior.  Most of us do it and don't realize we are doing it because it's just ingrained in how we function day to day.

I think this scene in the Temple Grandin movie explains it the best.  In this part, Temple has just completed her Masters of Science and is at her mother's for a holiday event.  The scene shows a conversation at the event, the stress it caused, the meltdown afterwards and a conversation with her mother.

The line where her mother says, "I don't want you to avoid people" sticks with me.  But that is the thing that many autistic people want to do the most.  Those social nuances that we all take for granted, are lost on a person who is on the spectrum. They are very literal thinkers, so puns and innuendos are really difficult to navigate.  I have to remind myself of this a lot as I try to teach my child communication.

We practice recognizing emotion by saying what it is as she's experiencing...."You are really sad." or "Mama is very angry." or "Poppa is happy!"  and point out facial expressions.  When we are at the grocery store and I hear a kid across the store crying, I make a beeline for that kid....  "See, Nea, the boy is very sad.  He's crying."  (I'm sure those parents think I'm a bit off my rocker!).  Sometimes she really watches, sometimes she doesn't.  Until proven otherwise, I have to remain acutely aware that Nea's social skills require constant attention.

Nea has Autism.  It's okay to say it.  It's okay for her to say it.  I want her to be able to embrace it and understand that it is and always will be a part of her.  If we "qualify" it for her, I feel like we do a dis-service to her and quite frankly offend many others.

And, I don't know the definition of "fine" just yet.  At least not what "fine" means for Nea.  I don't think that part of her story has been written just yet.