A Peck

“I want to kiss you like that!” said my seven year old Isabel to a dear friend of mine.

My friend must’ve looked up at the movie screen, at the two young lovers passionately exploring the backs of each others' throats, and been horrified, for a moment at least, until she could get the dots connected.  Autism (Asperger’s or “high functioning” Autism in Isabel’s case) equals deficiencies in social communication equals “doesn’t have a flipping clue (and probably doesn’t care, actually) what’s appropriate or not in certain social situations.”

This doesn’t mean that Isabel is inappropriate in every social situation.  Sometimes, when you give her something, she says, “Oohhh, thank you!  I appreciate it (she tries to use big words) sooo much!!!  And I love you.  Do you know that?  I love you SOOO much.  I love you with my WHOLE, ENTIRE heart!”

But she isn’t saying this because it’s appropriate for the situation.  She’s saying it because she actually is thankful, and because she truly loves you that much.  Sometimes she says something along these lines that is actually rather inappropriate, such as, “I love you SO MUCH that if you died, I would kill myself and go to heaven to be with you.”

My daughter couldn’t actually care less (nor is she likely to fully understand) what’s appropriate from what’s not.  So if she says she thinks you’re beautiful, it’s not because she’s trying to get something out of you.  It’s because she has spent some time staring at your gorgeous face, has felt the warmth that exudes from your eyes, and has thought (probably out loud), “God, you are really beautiful.”  If she says it, she means it.  If she says it, then it’s the pure, unadulterated truth in her worldview.  If she wants something from you, she’ll ask you for it directly.  There’s nothing disingenuous about my daughter.

Isabel still tends to ooze love onto people.  In fact, since we’ve moved here to Montana, I have found all of these little notes that she’s written to these little friends of hers that still live in Arizona.  Here’s one of them, “Dear Savanna.  I will miss you a lot.  I like you more than me.  I love you Savanna.  Good-bye.  Good-bye.  Your friend, Isabel.” 

“I like you more than me,” oh, this kid tugs on my insides with her gorgeous little words.  And I think the reason she still oozes love uncontrollably onto other people is because she’s still little, and because she hasn’t yet experienced the inevitable consequences that come from doing so.  She’s starting to though.

Just yesterday, Isabel looked at her big brother, Alden, who’s nine years old now and is, unfortunately, becoming “cool.”  And she said to him, “I don’t like you Alden, I LOOOVE you!”

And Alden responded with, “I don’t LOOOVE you Isabel, I like you.”

And that’s it, in a nutshell.  That's what Isabel will get, most of the time, throughout her whole, entire life.

Her mother is a little bit like this too, if you haven’t guessed this yet (for those of you who know me well).  I’ve learned, of course, over the years, all of the unspoken social rules of the society in which we live (for the most part anyway, I hope).  But sometimes I forget, or I don’t think about it first, and I do something insensitive.  I once text ed Shane’s best friend, who’s also my best friend’s husband, who’s also MY friend (thank you very much) of over fifteen years, who saved my life once, and whom I love with my whole heart, that I love him.  Nothing else, just, “I LOVE YOU.” 

He called me up on the phone right away, and asked, “Did you text me that you LOVE me?”

“Oh,” I answered, “Yes, I did.”

“Umm, for any particular reason?” he asked somewhat sarcastically, calling me on the inappropriate nature of my action without being so unkind as to actually say, “I’m married, and you’re married, and we’re married to each other’s best friends, and you just don’t fucking DO that, you weirdo.”

“No reason,” I said, rolling my eyes as I remembered the stupid, unspoken rule about not telling married men that you love them, “I was just thinking about you, and I figured that since I text your wife that I love her on a fairly regular basis, that I should send you an “I LOVE YOU” once in awhile too.  That’s all.”

“Oh, okay,” he said, and we hung up.

I told Shane (who knows me better than anyone) about it as soon as he got home from work that day.  He actually laughed out loud and said, “Wow sweetie, you really are the “Isabel” in our group of friends, aren’t you?”

“Fuck you!” I pouted in embarrassment, as he put his arms around me and continued chuckling.

I once got an email from a very old friend, who asked me, “How are you all doing?”

Well, I wasn’t sure how to respond, exactly, because not only do I tend to overdo it sometimes, but I also tend to make people that don’t know me very well nervous when I do.  You see, this guy is married too (basically).  And the only way to talk to somebody that you don’t know very well anymore, who’s married (basically:), “appropriately,” is to small talk.  And I’m not very good at small talk.  So I asked Shane if he could help me respond to this person, whom it was important to me that I didn’t make nervous.  And Shane said, “Sure, just write out the email, and then I’ll look at it before you send it.”

So I sat down and answered the question.  Cale, at the time, was having some medical problems, so I wrote out a two and a half page long email detailing Cale’s problems, and I’m so glad that I had Shane look at it before I sent it.

“Oh no, sweetie,” he said.

“What?  What’s wrong with it?  You didn’t even read it!” I said.

“I don’t have to, it’s too long,” he said, “This guy’s not interested in the details of Cale’s medical problems.”

“Why not?” I asked.

“Well, he’s a guy.  Right?” he asked. 

“Last time I saw him, yeah,” I answered.

“Then he probably just doesn’t care that much,” he answered.

So I deleted the whole email and wrote, “Fine.  How are you?”

Shane laughed and said, “You don’t have to lie to him.”

By this point I was getting frustrated, “Well, then what the hell am I supposed to say?”

 “Just write a sentence for how each member of the family is doing.  ONE sentence for each member.  You can be honest with him and say that Cale is having some medical problems, but write two paragraphs, TOPS, for the whole email,” he said.

I’m not actually stupid.  I just tend to misjudge a little bit, occasionally, what’s appropriate from what’s not, and I know from my own past experiences that this can cause problems.  But the cool thing about being an adult is that I just don’t have to care about these things all that much anymore.  Isabel, on the other hand, still cares about these things deeply.  It’s not so much that she cares about what’s appropriate or not, it’s that she cares intensely for her relationships.  And this is hard for me to watch.

It makes me kind of crazy when I hear the stereotype that people with Autism don’t love, or that people with Autism don’t like people.  This stereotype is erroneous and completely ignorant by the way.  Autism isn’t a “social” problem at all, in my opinion (although it may cause social problems:).  It’s a communication problem (one that can shine quite brightly in social situations).

You can sort of see how this stereotype came into being.  People with Autism aren’t necessarily able to communicate their love in the usual ways for a variety of reasons (reasons which may include lack of receptive/expressive verbal communication, lack of receptive/expressive non-verbal communication, behaviors, sensory issues, a combination of the above named, etc.).  They might not make much eye contact, for example, either because they don’t comprehend what it means, or because eye contact may actually be physically or spiritually painful for them.   

Touch is another big one for expressing love, and if a person with Autism has that particular sensory issue (where touch is physically painful for them) then they can’t communicate their love using touch.  It doesn’t mean that they don’t love.  It means that they don’t touch, which YOU may interpret to mean that they don’t love.

Another stereotype that makes me crazy is that people with Autism don’t like to be touched.  Only the people with Autism who have that particular sensory issue avoid touch, but there are many people with Autism that don’t have that particular sensory issue.

In the case of Asperger’s or “high-functioning” Autism, love (amongst other things) may be expressed in inappropriate ways, because the person might not immediately comprehend the full meaning (every single, tiny little nuance of all of these rather silly, unspoken rules that we’re all supposed to follow) of expressing something in a particular way. 

There’s a scene in the T.V. show, Doc Martin (on PBS), that comes to mind here – where Dr. Martin and Louisa had spent the evening rushing a friend’s child to the hospital, had waited at the hospital all night long to see if the child would survive (the child did survive and had stabilized), and had just gotten into a cab to go home when, both feeling relieved, happy, and incredibly exhausted, they savored a long, and very emotional, first kiss.  Afterwards, Dr. Martin (who, it’s implied, has Asperger’s) looks deep into Louisa’s eyes and says, “Louisa?  Do you have a regular oral hygiene regimen?”

I laughed so hard I almost peed in my pants.  And it’s not that Dr. Martin doesn’t love Louisa.  He does love her, so much so that he’s concerned about her teeth.  But she, of course, doesn’t take it that way.  So, you see?  It’s a communication problem.  Not a love problem.

My daughter has been blessed with the gift of knowing how to express love (we’ll see what happens as she gets older, however, if she still tries to express it in the same ways).  When Isabel loves somebody, that person knows it (unless she has to suppress it in order to be “appropriate”).  And this usually has something to do with that person loving her.  And if she doesn’t love somebody, well, I’m afraid that person usually knows that too.  And this always has something to do that person not loving her. 

Isabel knows it, to the very bottoms of her toes, when somebody doesn’t love her.  She can read a fake smile (or anything else that isn’t genuine) like the back of her own hand.  And this, I think, is why people with Asperger’s sometimes grow to dislike people in general (my brother, for example, has become a bit of a recluse).  It isn’t actually people that my brother dislikes (although this is what he might tell you).  It’s the fact that people aren’t always genuine (motivated by what’s fundamentally good or “right”), and his resulting perception that they're unsafe, that he dislikes.  He also doesn’t have a lot of patience for all of the silly little social games that we all have to play.

There’s a fundamental honesty to my daughter.  You can count on it, in fact, because it isn’t motivated by what's appropriate or not (or even by love, for that matter).  It’s motivated only by what, for her, is true.  I think that my daughter might actually be incapable of lying.

A friend of mine once had a small, decorated box full of little pieces of paper.  And Isabel asked her, 

“What’s on those pieces of paper?”

“Words,” my friends answered, “Pick one of them out of the box, and whichever word you get is the word that describes you the best.”

Isabel picked out a piece of paper and opened it up.  And her word was honesty.

“That’s a good word for her,” I said to my friend, “because Isabel can’t lie.”

“Oh, I lie sometimes,” Isabel said.

I laughed out loud, because this confirmed my theory.  She does, in fact, try to lie sometimes, and then she immediately follows it up with, “Okay, that was a lie.”

My daughter is motivated, first and foremost, by what’s true or “right” for her, according to her own view of the world, regardless of how she or anyone else feels about it.  So if you want Isabel to do something (or stop doing something), and you communicate it to her clearly, and it makes logical sense to her why she should do so (if it’s actually "right," and not just a “do it because I said so”), then she will do it.  But if you have to get her to do something (or stop doing something) that isn’t necessarily "right" for her (sit quietly in class, for example, while the teacher is talking), then she will do that too (with some sensory supports in place), but only if the teacher loves her and she loves the teacher.  

At this point, her motivation becomes, “I have to follow this silly routine because my teacher, whom I genuinely love and who genuinely loves me, needs me to.”  This can be “right” for her as well.  But if this component isn’t there, and the thing you need her to do doesn’t make perfect sense to her, then good luck trying to get her to do, or stop doing, whatever it is.

I think this is why Isabel struggles at school.  Because people at school (people everywhere, actually) are motivated by a lot of different things, but “what’s actually right” isn’t always one of them (school tends to be about following rules that don’t always make sense to Isabel).  

This is why social stories about how following the routines/rules at school helps everybody to get their needs met, are invaluable for kids with Autism/Asperger’s.  You have to play the love card with Isabel a lot (Isabel has to know that she's loved, and has to be shown exactly how to behave, and has to know that this "behaving" is an expression of her love to everyone around her, with the reasoning being that she's helping everyone to get their needs met by behaving).  It's the only way to get her to do things that she doesn't want to do.  It's the only way (that I've found anyway) to make the routines/rules at school "right" for her.  Then I just have to hope like hell that they actually do love her at school.    

Being motivated by what’s true or “right” (for the person, according to their own worldview) makes me think of the Girl With The Dragon Tattoo (yes, I finally saw the movie, anytime there’s a character with suspected Asperger’s in a story, I get harassed by friends to experience the story – I didn’t read it though, I only watched the movie).

My dad and I were having a little discussion about Lisbeth.  And he admitted that he was worried, for awhile, because of the things that she’s capable of, that Lisbeth would eventually turn on the journalist.  “She won’t,” I told him.

“How do you know?  You haven’t even read the books,” he said.

Good point.  And I only know the first story.  But I know that she won’t turn on the journalist.  And this isn’t just because she loves him.  It’s because he’s good.  Human, yes, but fundamentally good.  So she won’t be able to bring herself to damage him, no matter which direction her emotions go (not if the author has done his homework and has created a believable character anyway, and I believe that he has).  Sorry if this spoils the suspense for anyone.

So why all of this talk about Isabel?  Well, it’s because I’m looking for therapists for her now, and I’m trying to figure out the kinds of things we need to be working on with her.

At the exact moment that I was publishing the last piece of my previous blog post series, my husband got a phone call from the state.  It seems that Isabel has been selected for a Medicaid waiver.  Baffled as hell, we called the state and asked them why.  And it seems that I was wrong about how the whole thing works.  Well, not ALL of it actually.  Only part of it.

Apparently, children with disabilities who are applying for Medicaid waivers here in Montana are put into different categories depending upon the cost of their needs.  If a child needs $15,000-$25,000 per year worth of therapy, they’re put into one category.  If a child needs $25,000 - $40,000 per year worth of therapy, they’re put into another.  If a child needs $40,000 - $60,000 per year worth of therapy, they’re put into another, etc.  And I’m not sure that I have the numbers exactly right here, but you get the idea.  Cale, obviously, was placed in the highest category.  Isabel, however, was placed in the lowest.

There are fifty waivers total (for the entire state) available to children in the highest cost category.  More waivers are available, however, to children in the lower cost categories.  I assume that this is because for same price as one high cost child, they can give multiple lower cost children assistance.  And they don’t tell you about any of this when you apply for the waiver.  “Whatever help we can get for Cale, even a little bit, is absolutely vital,” doesn’t cut it.  Instead they ask for the list of therapies prescribed by your child’s doctor, which you trustingly and naively supply in full.  Then they place your child into one of these categories based on this information alone. 

So my daughter, who speaks functionally and is in a regular classroom at school, is going to be getting therapy, and my son, who is still non-verbal and in diapers and breaking things and attacking people every day, isn’t.  I’m certainly not complaining, as Isabel still needs speech therapy to address her regressing social communication skills, and physical therapy to address the fact that she still can’t balance herself on one foot, ride a bike, or tie her own shoe (and she’s nearly 8 years old now).  But compared to Cale, Isabel is very functional.  Yet she’s the one who’s going to be getting therapy.

I suppose that I should feel grateful for the help for Isabel.  I mean, when I think about it, Isabel is the one who has the potential to go pretty far in life with proper assistance.  She’s very smart.  And I think that therapy, for her, could be the difference between her becoming a doctor or an attorney some day, or becoming a watered down version of Lisbeth.  So the gratitude is settling in slowly.  I’m just having trouble wrapping my brain around it all, that’s all.

Oh, how was it that Isabel was at a movie, watching a big, French kiss?  That was my fault actually.  I sent Isabel to the movie Mirror-Mirror (the Snow White movie) with a couple of friends of mine, thinking that it was a kid’s show.  But it turned out to be more of a lightly-rated adult show instead.

When Isabel asked my friend if she could French kiss her, my friend, being a rather good sport, set the boundary beautifully, “I will not kiss you like that.  I will give you a peck (and then she showed her what a closed mouth peck looks like).  And that’s all.  A peck.  Do you understand?”

“Oh... alright,” Isabel said, and Isabel gave her a peck.