My Autism Insights

image from MacawRescue.org

The universe has a sense of humor and sends us reminders in some odd ways.  This morning I came across some baby macaw parrots in my travels. The babies are about the strangest looking birds I’ve ever seen.  They were gawky and falling all over themselves, a bit pitiful, actually.  I had no idea what they were at first glance, I actually thought they were turkeys.

It occurred to me that some people may look at Gus that way: odd.

As I watched the little 3-week-old creatures, they grew on me.  They were actually cute and even just in the short time I was watching them, they had distinct personalities.  One was pretty smart and kept out of the way of the other two who seemed to be wrestling.  It was fascinating.  And the best part - this is what they become:

image from Wikimedia Commons

If the macaw parrot can transform into such a beautiful and graceful creature, I have no need to worry about Gus.  He’s already beautiful and he’ll grow into himself eventually.  He’s already starting at an advantage - he’s way cuter than those little guys were!

“Stimming” or self-stimulating behavior is a very common quirk among autistic children.   Gus is no different.  As we were eating dinner last night, I noticed something that he does all the time, especially when eating, and that I usually tune out: he hums.  It’s not the only stimming behavior he has, and honestly one of the least disruptive for me, but for the first time in a long time I paid attention to it and started thinking about stimming in general.

Stimming is often a means of self-soothing and/or a means of getting a sensory need met.  Some common behaviors that are often mentioned in the media are hand-flapping, spinning, or crashing into things.  Humming can be another.  I think, for Gus, when he’s tired and less able to filter out noises that disturb him, the humming seems to act as a white noise.  He also carries on an endless chatter at times, and I think this is another stimming behavior that doesn’t quiet the noises around him, but helps to quiet some of his internal noise.

Many times, these behaviors are discouraged and in some cases all but forced out of the individual, and as I was listening to Gus’s little ‘food tune,’  I had to ask myself: why?  I suppose if we were in public, it might annoy someone, but at the same time, he might get annoyed by people talking too loudly, but I can’t tell them to stop.  I can certainly understand the need to teach him appropriate times and places for certain behaviors, but I don’t see how just stamping them out completely is useful to him.  Sure he can’t talk to himself in class, but when he’s home, why not?

Should we remove these behaviors or simply provide alternate means of soothing/sensory input at certain times and just let our kids be at other times?  I know my own answer to that - I’m perfectly fine with the ‘food tune,’ but what do you think?

For more information on sensory seeking behavior, see my post on Proprioception and Sensory Integration.

With Sensory Integration Disorder, there is typically either an oversensitivity to an environmental stimulus like noise, texture, smells, etc.  But there can also be an undersensitivity to stimulus as well, which we see when an individual with Sensory Integration Disorder is seeking sensory input, for example, crashing into things.

I’ve written about Gus’s oversensitivity to certain things, but today he reminded us of one of his undersensitivities - high tolerance for certain physical sensations.   He took a bit of a spill on a treadmill today and hit his back leaving a nasty bruise.  Now if I had done that to myself, I’d probably still be in tears.  When I asked him about it though, his response was a very impatient, “It will heal!”  If we hadn’t asked about the bruise at bath time, he never would have even mentioned it.

It’s pretty amazing, like his noise sensitivity only seems to pertain to certain noises, his pain threshold only seems relevant to certain types of pain.   He can’t have his toenails cut without howling that it hurts, but today’s event was completely ignored.

The boy fascinates me to no end!

Hope you all enjoyed/are enjoying your holidays!  We spent Christmas day visiting family.  Although it was a long day involving a good bit of travel, it was lower-key than usual, which was a good thing.  The last leg of our journey was to my husband’s aunt’s house.

They have a collection of singing plushies: singing Christmas trees, snowmen and penguins, dancing Santas…the works.  There was even a tree that danced and walked toward you.  Gus is always fascinated by them.  He especially enjoys making them all sing at the same time!  So apparently, his noise sensitivity does not extend to lots of different toys singing different songs all at once!  But when his sister cries it’s like the end of the world as we know it.  As irritating as all the mixed songs were to me, the unabashed bliss on his face eventually made me keep my mouth shut and just let him have his fun.

Always interesting to note all the little nuances of Gus’s Asperger’s and Sensory Integration Disorder.

Did you notice anything new or interesting over this holiday?

Yesterday, I had the brilliant idea that I would take both kids to see Wall-E by myself.  I got over that little moment of crazy.  Instead, I traded for a slightly different crazy.  We tried chocolate today.

Gus has never reacted well to chocolate.  It tends to make him a little ‘nutty.’  But earlier this week the kids helped make brownies for their dad’s birthday, so it seemed wrong to not let him have any.  At least I wasn’t dim enough to give it to him when he had school the next day.  It will be interesting to see if I actually get a full night’s sleep…

I figured earlier would be better, so I let them have brownies for their morning snack.  This may seem irresponsible, but considering we were up at 5 and they’d had breakfast hours before, it wasn’t such a big deal.   He was okay for about 2 hours.

By noon, I turned to look at him and asked myself, “What have you done?”  Jumping on the sofa, racing through the house…typical behaviors for Gus, but with an extra manic glint in his eyes.  It was a little scary.  By two o’clock, I couldn’t take any more, especially since he kept insisting on having Charlie Rose on.  I told the kids to go play in their rooms and we were taking a break from TV.  I spent the next hour wondering if I should call an exorcist.  Holy cow, the meltdown!  Defiance, anger, tears, calling names (mostly toward his sister, not me)…At one point I had to carry him up to his room and got an elbow to the lip (I think that was an accident though).  All that for shutting the TV off for 45 minutes.

We did get outside for a little while and he’s going through bouts of calm and crazy, alternating.

Why did I bother since I could have predicted all these things?  Well, I figured that he’s older now and maybe his body chemistry has changed enough that he can have it once in a while.  Clearly I was wrong.  If I get lucky, it won’t corrupt his system for the usual 48 hours and I might have my boy back by tomorrow.

Thanksgiving Thursday Thankfulness tomorrow!

Autism is all over the media these days.  I don’t think a day goes by now that someone, somewhere isn’t talking or writing about it.  It wasn’t always this way; remember when you barely even heard the word?  Yet now there are those who seem to think it’s okay to capitalize on others’ hardships (that’s always been the way, maybe), using the rise in autism awareness as an excuse to ridicule/chastise/insult…I recall the stories over the summer of kids with autism and families being treated horribly.  I remember reading the comments on Internet articles that made me wand to go around the country smacking people for their ignorance.  But it has dawned on me that they really have no clue.

These people seem to think that if you are a parent of a child with autism, you must fall into one of two categories.  If you are still at the point of anger/sadness/fear, then you must just be seeing attention? money? a foundation to send your family on a Parisian vacation?  If you’ve come to the point of acceptance where you can acknowledge the challenges of autism but can also appreciate the awesomeness of your child, then you must be - I don’t know - Pro-Autism? (Which is probably something akin to Pro-Abortion - and an equally ridiculous label.)

What it comes down to, I think, is simply that these (many) ignorant people just have no frame of reference and can’t even begin to understand autism.  You might be thinking, ‘there’s no excuse for ignorance these days.’ But, isn’t there?  Come on, we all know how accurate the Internet can be, right?

Anyway, I’ve come to realize just how easily I could have been one of those people.  Some days, life with Gus has been like a Parisian vacation: traveling around a beautiful country where I don’t speak the language.  With some guidance it can still work out all right, but without it…could be pretty awful.

Let’s look at one scenario: Take a person who had very little experience with babies and small children (like me). This person had a child and knew from the beginning that her son was very sensitive, but didn’t think much of it.  And he was awfully cute, so she just adapted and made sure everything was quiet and not upsetting to him.  Anyway, newborns weren’t supposed to sleep, right?  Mother and son grew very close and developed their own internal communication.  It didn’t seem strange that he never asked for things; he had lots of small words; he was acquiring language.  Didn’t all kids repeat those words over and over?  What else were they supposed to say?  And she knew what he wanted most times, so he didn’t have to ask.  It did seem a little odd that he rolled instead of crawled, but everyone develops in different ways, so no big deal, right?  She thought it disconcerting that when his entire daycare class was at one end of the play yard, he’d be at the other end - alone.  But then again, she often liked to be alone; maybe he was just like her.  It was all good for about eighteen months.  Then when the ‘meltdowns‘ - hitting, screaming, kicking (not great for a pregnant belly), wailing inconsolably - started, this mother found herself at a crossroads.

She could head down the path marked, ‘Bad Bratty Kid - Discipline,’ or the road marked, ‘Normal Terrible Two’s - Proceed as Usual,’ or the way marked, ‘Get Help.’

Do you see how easy it is to end up down a negative path?  With no direction, no frame of reference, or even worse, bad guidance, anyone could end up down that mean, intolerant, bad road.  I had no frame of reference, but I was fortunate to have people around me who did.  They were my compass.

Unless they are scouts, how many people always have a compass with them?

I guess my point is that I’m feeling less angry at the ignorant, intolerant people of the world who say such awful, judgmental, hurtful things about people on the autism spectrum.  I’m feeling a tiny bit more tolerant, a little more empathetic.  The behavior is not right, but more worthy than pity than a beat-down.  At least that’s where I am today.

Four things I’m thankful for this morning:

1. I am thankful for babies.  Not mine, but friends’ babies (not to say I’m not thankful for my own, they’re just not babies anymore).  There’s nothing like a newborn to bring back those old feelings of overwhelming love that you felt for your child when he was born (or she).  We had three solid weeks of hell when Gus was born (typical of new parents perhaps), but after we learned what he needed, he was an absolute dream baby.  MM was awesome from the minute she came home - how ironic that she’s the tough one now!

2. I am thankful that Casdok at Mother of Shrek has created a new blog called Faces of Autism that features some really beautiful people.  It’s a wonderful idea and wordlessly silences so much of the negative autism talk.

3. I am thankful that Congress hasn’t yet rushed to bail out the banks because any more rash and stupid behavior by our government might just make my head explode, and who would clean up the mess?

And not a digression…

I’ve been haunted by a thought for a few days now about the DSMIV and how it needs to be updated.  I think a new category needs to be added: MADD - Maternal Attention Deficit Disorder.  I’m only half kidding.  Here is some of the criteria:

• Can’t complete a task like folding laundry without becoming distracted and consumed by no less then 3 others, one of which should take the rest of the day.  Leaves a minimum of 4 tasks incomplete for at least 2 years time at any given time.
• Can’t carry on adult conversations without losing the thread.  Easily distracted by the child hanging from pants leg or skirt.
• Forgetful about daily needs like breakfast, lunch and/or dinner.  Readily remembers and often exists on snack foods.
• Routinely stares off into space similar to someone having a petit mal seizure, but in reality is just falling asleep with eyes open.  This is one of the first symptoms of upcoming MADD and usually presents in new mothers; however, any level of sleep deprivation can trigger it.
• Sends kids to school with no lunch, backpack, jacket, shoes, or any other essential item.
• Often leaves the home in house slippers, forgetting to change into shoes.  Roaming the neighborhood in plaid pajama bottoms is a sign of advanced MADD.

These are just some of the symptoms I see on a regular basis; there are loads more.  MADD seems to be completely environmental, caused by a deadening of brain cells after extended periods of multitasking.

There is probably no medication or cure for this disorder, but perhaps, since the fed is feeling so generous these days, there could be some sort of social service agency set up for people (there are probably some dads suffering from PADD) suffering with this dreadful condition.  Respite services, regular distributions of chocolate and coffee, massages covered by health insurance, and nationwide mandatory nap times would all be good starting points.

Do you or anyone you know suffer with MADD or PADD?   How do you cope with it?  And, what are you thankful for today?

4. I am thankful that my bizarre sense of humor still helps me get through a day.

“Your assignment is to read up to page 3975…Your assignment is to read up to page 2885…Your assignment is to read up to page 5930…Your assignment is to read up to page 24…”

All night I was being given assignments that I could never possibly complete.  This is Gus’s manner of perseveration.  He repeats part of an idea and then differentiates the last bit.  He does this with questions, with knock-knock jokes, with complaints, with Pokemon speak…with just about anything.  It is one of the harder aspects of his condition for me to cope with.

I have trouble absorbing information or thinking clearly when there’s too much noise.  When the noise is the same repetitive, very loud sound over and over again, it’s all I can do some days to keep from beating my head against a wall.  When that repetition is interfering with something that needs to get done in a timely fashion, homework for instance, occasionally I do pound my head a few times, much to my head’s great annoyance.

When he starts to perseverate, I usually try to get him to stop by saying, “OK, we’re finished with that,” but it doesn’t always work.  On a day like yesterday when he gets completely consumed with the giggles over his fixation, there’s no getting through to him.  Or when he’s upset and perseverating on whatever upset him, all that can be done is to sit him in my lap, rub his back, and rock him until he calms down.

It’s certainly not the worst thing in the world.  Some days I just have less patience than others (I’m in danger of getting kicked out of the Supermom League with that admission, but the truth will out as they say).  How do you handle perseveration?

Everyone has their own standards and routines for their household and their children.  I don’t question the people who load their kids up on soda and cookies, who let their kids run amok, or who end up jumping through hoops because they can’t or won’t discipline their kids.  It’s generally not my business what goes on in other people’s houses, and if that works for them, fine by me.  But I wish people wouldn’t question what goes on in mine.  I have good reasons for what my kids are or aren’t allowed to eat.  I have reasons for why they have to keep to a certain routine.  I don’t see why I should have to justify or explain to anyone.  I’m not even talking about the people who are downright rude and nasty - they’ll get their own post one day.  I mean the people who don’t even realize that their incredulous air of disbelief can be a little offensive.  I often want to grab a megaphone and yell, “I live with a whole set of circumstances that you don’t understand!  Butt out!”

I don’t mind questions of curiosity, asked with a real interest in understanding.  But the funny looks, the expressions that say, “You need to lighten up,” are what annoy me.  I need to do what will allow my children to be at peace in their home.  And last I checked there was no law stating that just because someone wants to raise their kids one way, I have to follow suit.  I’m not a sheep.

I heard an interesting quote the other day: “If everyone kept their own front yard clean, the world would be a much cleaner place.”

I’m all for the concept of loving thy neighbor, and people should certainly look out for one another.  I don’t see how judgment comes into the picture though.

I’m a little prickly today - I’ll have something more positive to write tomorrow.

my feet look so much smaller than they are in real life!

I was tagged for this by Mandy at Texas Medical Freak .

“Now I am supposed to list either six boring or quirky things about me. Then pick some other bloggers to continue the circle.”  I try to keep any memes that I do on topic, so I will try to find six things that are by some stretch on-topic (some of my own sensory quirks).  When I run out of those things, I guess I’ll just be a little off topic - please don’t sue me.

1. I hate to wear outdoor shoes indoors because they make the floors dirty, but I almost always wear socks or slippers around the house.

2. I get very confused and irritable if I have to listen to too many voices at once or too much noise. Good thing my kids are so quiet (*sarcasm)

3. I have been relatively sleep deprived for the past seven years, which is partly due to motherhood, but I never slept that well to begin with.

4. I drink tea almost to the exclusion of everything else.  I do have the occasional juice or soda, but not that often.  I even take a travel mug of tea on my bike rides instead of water.  I should really stop that.

5. I love books and words, and I regularly obsess over the ones I like.  I’ve read Harry Potter more time than I can count, and am deeply embroiled in the HP fandom.  In my defense, the fandom won’t allow me to leave - it’s not my fault at this point.

6.  Windows without curtains or blinds make me paranoid.

Those seem fairly boring to me, but please don’t make fun.  My super-strong ears will hear your laughter halfway around the globe, and I’m very sensitive.

I’m tagging some of my favorite bloggers for this: Maddy at Whitterer on Autism (because I know she’ll come up with something fantastic), Angela at Memoirs of a Chaotic Mommy , and Jessie at Speakup: An Adult Autistic Perspective  on Growing Up on the Autism Spectrum .  Have a blast, ladies.