(Not so) Typical Tuesday: Autism Awareness in Three Examples

What is Autism Awareness?
It is being aware of what Autism really is and knowing that, even on an otherwise ordinary day when a person with Autism would otherwise blend in with all the neurotypical people in the world, Autism is part of the overall picture. Below are three real-life examples that actually happened in my home. All three examples happened earlier today:

1) Trini--who is one month from her 5th birthday--is acting cute and charming. She has counted to 19 (minus 15 of course) and has identified all the letters on a paper on the fridge. She has poured her own juice and has dragged the stepstool over to the fridge to look for lunch. But the doors are very swing-able, and instead she begins swinging on them back and forth.

When I stop her gently and place her feet on the ground, she falls to a heap and starts screaming "HUNGRY!" repeatedly. I offer her several lunch options and get either a "No!" or several shouts of "HUNGRY!" She kicks the wall and begins to dump things onto the ground and fling books out of the shelf.

I have been in this situation many times, so I start the intricate dance of damage control: ignoring and calming all while praying this incident does not last an hour. It doesn’t. This time we are lucky and it lasts only twenty minutes.  Then this same child asks me in a full sentence, “Can I have chiken nuggets?”

If you were not witness to the twenty minute meltdown, you would swear my child is “normal.” And while I could show you many other subtle reasons why my child has legitimate reasons for her diagnosis of Autism, if that is all there was, I might be inclined to agree that her little quirks are no big deal. But the meltdowns from nowhere do exist and raise the Family Emergency Level to Defcon1.

2)Amelia has Aspergers. She thrives with the routine provided by the structure at school where  the rules and consequences are laid out. And though we have done behavior charts and other methods of positive discipline, family life does not always lend to the same type of structure. And at times she does something wrong that was never in her list of infractions.

Today she comes home and begins to color. After she finishes, her sister Kristin realizes Amelia has defaced a picture drawn by Kristin’s best friend as a gift. It cannot be repaired or replaced. Since Amelia’s main offense to her siblings has usually been to call them names, our solution is most often to have her write an apology.  But I feel in this situation something else needs to be done. I feel she should do an act of kindness for her sister. Because I will not accept just a sorry note, she throws a tantrum very similar to the one I describe above with her little sister. The difference is that Amelia uses more damaging words than damaging actions.

She also has other issues related and co-morbid problems. Like her sister, these alone would be minor issues, but when added to the big picture, it becomes a big challenge.

3) My son Josiah is a responsible and courteous eleven year old that is rapidly approaching his twelfth birthday. He is also on the Autism Spectrum. The DSM IV would call it PDD-nos, the DSM V would call it simply Autism Spectrum Disorder. Other than some co-morbid learning disabilities, he appears “perfectly normal.” He has obsessions, but more than just one or two, plus he can be persuaded to talk about other things.  Sometimes he does not get social cues without a bit of explanation, but he understands once that explanation is given and does show empathy.

His issue today is rigidity. As a rule, he cannot eat lunch unless he eats breakfast first. He cannot eat breakfast if he does not get dressed first. He is also very particular about his clothing.  It has to feel right and fit a specific way. Today the day was delayed by a couple of hours because he had no clean clothes, and to get the basket out of the car would require him to re-wear something he wore yesterday.  That idea repulsed him until I told him he could take a shower as soon as he got back inside.

Years ago he would react to more things in more severe ways. Today it is less frequent. But it is still frustrating for both of us.

So what is Autism Awareness?
It is being aware that there are many children like mine. My children are on the Autism Spectrum. Sometimes all the pieces make them appear neurotypical, and sometimes all those pieces fit together in a way that shows they are definitely on the Spectrum. That is what Autism is, an existence of inconsistencies with variables at both extremes.

I love Trini, my Autistic daughter. I even love her Autism. The same is true regarding my other two children on the Spectrum. But I am grieved by people who think that saying, “She looks normal to me,” is a compliment. It isn’t. Being Autistic isn’t what it looks like on the outside, it is how you operate on the inside. And even if my children could blend into a crowd as well as Waldo in his famous books, if you look carefully you will find them: my uniquely challenged, uniquely special children.

So if a parent tells you their child has Autism, don’t deny it or downplay it. It is the same as a parent telling you their child is blond or tall for their age.  And the parent of an Autistic child wants to be able to be open about it. They want to smile with you when those factors make their child endearing and get comfort when those factors are hard to handle. Autism Awareness is understanding that it is not a paradox to say that Autistic people are both normal AND different. Autism Awareness is believing it when people say that they (or their child) is on the spectrum. It is supporting those individuals and their family no matter what it looks like.  In the end, Autism Awareness is loving someone with Autism.