Thursday, March 8, 2012

There Are Worse Answers

Many people we know are quite surprised to hear that Maya is on the autism spectrum.  Largely I think this is because these people have little to no experience with autism and they have a preconceived notion in their mind about it and Maya doesn't quite fit the mold.

Still, she exhibits many classic behaviors attributed to autism.

For the majority of people out there, they associate autism with the inability to speak or repetitive behaviors or savant-like abilities.  Maya does exhibit repetitive behaviors, she is a stimmer (the name given for self stimulating activities like arm flapping or other repetitive movements).  She is an arm flapper but she doesn't do it all the time,  although she still flaps regularly most evenings when she is tired or when she needs to decompress.  And while she may do it once or twice or even three times, she has never been the type to flap her arms for 45 minutes straight.

Maya also scripts, scripting, another common behavior attributed to the autistic spectrum is the use of  uses repetitive dialogue, some from movies, television or songs but mostly from her pretend play.  Maya uses this technique when she is in situations where she is nervous or uncomfortable as a way to soothe herself.  Her scripting is often based not in movies or television but in her pretend play and she intersperses it with real conversation so even we sometimes have a hard time recognizing when she is scripting.  For a very long time I didn't recognize her doing this as scripting since she did not repeat whole patches of dialogue from a movie or cartoon, as I have seen with other kids that script.  For a long time I just considered this as her  "not being in the moment" with us as she would retreat back to some other dialogue or conversation.  Now that she is a bit older and a bit more secure, she relies on scripting less and she comes out of it easier but very often she prattles on and on in a kind of nonsensical conversation with herself where, even though you understand what she is saying, you don't get at all what she is trying to say.  Many people, including us try to engage her during scripting by offering suggestions or asking questions or trying to join in her rhetorical conversation.  Often this upsets her and she will get angry really easily.  Because it is all a coping mechanism.

And she also regularly lines up her toys and still, much of the time colors with one color in a coloring book.  For a long time she would color everything in a picture or even in a whole coloring book the same color.  Now she uses different colors but still often will color now with the green marker, and color everything she wants, going from picture to picture in green and then repeat the same thing with yellow or red.

Maya has always had sensory integration issues since toddlerhood, where she would often choose to play in sand, water and mud, she has been hypersensitive about certain fabrics, to this day, no matter what, she staunchly refuses to wear denim and balks about things that are not 100% cotton.  She also will not eat certain types of foods, not because she is a picky eater (although you also see that in a lot of kids, and not just the autistic ones), but because the textures of certain foods really bother her.   Maya loves tomatoes but cannot eat a tomato because she cannot tolerate the texture and the seeds.  But she will eat a small can of tomato paste like a yogurt or when I make spaghetti sauce I always save a bit for her because it is pureed and it doesn't have the same slimy, seedy texture as eating a tomato would.  It was weird at first when Maya would ask me to eat tomato paste but after I got past my kookiness of it, I remembered tomatoes are packed full of vitamins, especially A and C and since Maya is not a huge fruit eater, tomato paste is a great source of these vitamins for her.

Yep, I am the mom that lets her kid eat tomato paste.

And in the last year I have noticed that chewing is another way she decompresses.      When she was a toddler, Maya would often put he mouth up against the window when it was cold outside and she would lick the window or sometimes she would put her mouth up against the monkey bars.  I wrote it off as just toddlerhood and just prayed she wouldn't do it when too many people were around and when she hit the age of 4 or 5 it completely stopped so I didn't think anything of it.

I did notice that when we went to unfamiliar places together Maya would often hold my hand and kiss it repetitively (say 50 times in a row), at first I just thought it was her sweet and loving nature, as she is a total love bug.  I am such a great mom, my kid can't help but kiss me spontaneously!  But I started to realize it was coping mechanism and an extension of window licking.  Last summer at an amusement park, we were waiting to board a ride and the line wove through a lot of dark tunnels.  There were some rowdy teens in front of us screaming and scaring each other around every dark turn or when the lights would flicker.  Maya held my hand close to her mouth, kissing, kissing, kissing and at one point when one of the girls screamed, she bit my hand, hard enough to draw blood.  I,  in turn screamed in pain and Maya ended up crying the whole rest of the way in line and for days afterward she would come and ask me if my hand was healed.  Now I am the mother who yelled at the kissing kid in public.  At the beginning of the school year she was chewing on the end of her sleeves quite regularly and although I scolded her for doing it, I started to realize that this was a sensory issue all along.

She does all of these autistic behaviors but not so repetitively or rigidly that they define her.  So in turn, if people not accustomed to recognizing autistic behaviors see her, they see these things but they don't immediately recognize them as autism.

Because let's face it, if you are not personally dealing with autism a lot of these behaviors might make you go hmmmm once in a while when you see them, but you would never put it together that these things add up to autism.

As time has gone on Maya's language deficits have become more obvious to me.  When we first had her speech evaluated we were completely shocked that she was not age appropriate in language.  How can that be,  we asked?  She speaks two languages.  We just couldn't get our minds around it.  They told us that Maya's language production was far further developed than her comprehension.  For a long time I didn't quite buy this explanation and even wrote it off, that when you have your kid evaluated they are literally put under a microscope and of course under a microscope you invariably always find something.  Ok, speech deficts, blah, blah, blah.  And yes, when I looked back my mind went back to times before we realized anything was wrong and I could remember times when it seemed like Maya didn't understand what was expected of her.

I remember that distinctly with potty training, spending days, hours, trying to get her to go to the potty.  I would run around after her for 15 minutes when the timer went off each hour to go and sit on the potty, after getting her to listen and come with me to the bathroom, she would often resist sitting on the potty but sometimes she would, and when I would try to coax her with promises of stickers, stories, a car, Maya would give me this blank look.  I described this look to Leo several times as her looking like she had no idea what I was talking about.  But never in a million years did I think this was true, even after the speech therapist told us it was.

But over the years more and more I recognize it.

Maya has a very difficult time talking on the phone, she will avoid it if possible.  Often when talking on the phone she whispers which I recognize as her being uncomfortable with it.  It's natural, Maya is a visual thinker and she just has a hard time conceiving the sound of someone talking to her without having the visual cue of it.

As I have mentioned before and in many other posts our Maya is a total love bug.  She is a snuggly kid, she showers us with kisses and hugs and loves nothing more than an evening or morning snuggle with us.  As the mom of an 8 year old I relish this, and treasure that Maya's autism lets us enjoy the small child stage a little longer than we probably would if Maya was a typically developing 8 year old. She also tells us she loves us an awful lot.  But she also uses I love you as a way "out" of something she doesn't understand.  If I ask her something she doesn't understand or something which is a little too complicated for her, she will answer with "I love you."  For years I have felt all gooey inside having a daughter who so freely expresses her love for us.  But for Maya, I love you does mean I love you, but  sometimes it also means, "I don't know what the hell you are talking about, lady."

So, I love you is a defense mechanism.  Sigh.  But still, considering what language she could use to put me off, by age 8 I had already perfected the eye roll to Olympic precision, using I love you is not the worst thing in the world.

I'll take it.

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