My Autism Insights

  image by Andre Koehne

An illuminating conversation this evening reminded me that ‘the system,’ in other words, the school system, is really not to be trusted when it comes to what’s best for your special needs child.  Many parents either believe that their school district has their child’s best interest in mind, or they believe that they can’t reject whatever the district is trying to push at them.  Neither is true as I was reminded tonight.

I called to schedule a visit to the local school’s special needs class (the one I said no to last year) and the teacher called me back to set up a time.  We got into a very interesting dialog.  Actually, I quite liked her and if Gus ended up with her, it would probably be okay.  But I’m glad I spoke with her directly.  For one thing, last year after she’d evaluated Gus, she felt that he would not be a good fit for her class (she has since changed her opinion since the makeup of the group changed).  The district at last year’s annual review told me that the teacher did think he was a good fit.

You’re probably thinking, “That must have been an oversight or a misunderstanding.”  Perhaps, but it gets better.

When they emailed the teacher that I may be calling about paying a visit, they told the teacher that I was unhappy with his current program.  Now, it’s possible that they could have inferred that from, “I don’t want him to change schools,” but I’m not quite sure how.

They also neglected to tell the teacher how often he’s been bounced around over the past 3 years - she said that even if he is a good fit, he should stay put or he would just lose another year in re-adjusting to yet another change.  Did I mention I liked her?

So the moral of the story is: whenever possible, communicate with teachers and service providers directly because school districts might say whatever they have to in order to get you to go along with their agenda.

image from Wikimedia Commons author: CJ

Yesterday, I spent a rare day out with my sister and left Gus and MM at home with my husband.  On my way to pick up Sis, I called the house to check in (not something I should do when on the highway).  First, the phone rang and no one answered; the second time, Gus picked up.  And here’s where the literal thinking took hold.

“Where’s Daddy,” I asked.   Gus was trying his best to have a conversation with me, but wasn’t modulating his voice well enough for me to hear all his words.  (Note to self: don’t try to comprehend the Asperger’s son while driving through an area you haven’t seen in over 5 years - you will waste lots of gas on wrong turns.) In between mumbles, Gus got distracted, but to his credit he kept coming back to me, “Are you still there?”  That I understood, and wow - way to focus, Gus!  Finally, I asked him to bring Daddy the phone.  The line went dead.

I had assumed that Gus was on the cordless.  (Second note to self: why would you assume anything with Gus?)  Guess again!  In an amazing attempt to follow my very vague instructions, he disconnected the receiver from the wall phone and brought it to his dad in the shower!  He did what I asked, quite literally.  Next time, I should be a little more specific.  Gotta love that he’s following directions, though!

Do you have any amusing stories about a literal thinker?

Vitus Bering - the real discoverer of Alaska

A day off from school can be a very enlightening thing.  Gus was home yesterday, and although I always do homework with him after school, it was a different experience doing it earlier in the day.  He absolutely did not want to do the work when I wanted him to and there was a good deal of acting out: rolling on the floor, loud talking, purposely filling in incorrect answers…I was frustrated, he was annoyed - actually this sounds like a typical day, except for what happened next.

Gus was (has been for several days) fixating on geography: who discovered ____; what’s the capital of ___, that sort of thing.  So, instead of doing his reading assignment or his math problems, he was going on about that.  Finally, as he was rolling around on the floor asking about who discovered Alaska, I said, “Well, I think Admiral Perry started out with 3 ships and then 5 more ships followed along.  How many ships got to Alaska?”  Booyah!  Instant transformation!  We got through a sheet of 3 digit addition, 3 digit subtraction, the stupid reading assignment about how to meet a dog (he hates dogs) and then he asked for, DEMANDED, a third math sheet.  He did not want to stop working.  Amazing how such a small shift completely commanded his attention.  Each problem became a made up story about some exploration to some country.  By the way, I stink at geography and I was spouting more crap than a newborn, but he didn’t care - I was working with him on his terms and he loved it!

So this begs the question, “Why can’t his teachers do the same thing?”  First of all, why is what they want to teach more important, more significant than what he wants to learn?  Does he really need to know the proper way to greet a dog?  It’s totally irrelevant to him - he’d be running in the opposite direction.  However, Admiral Perry having to fight off a team of sled dogs because he approached them the wrong way is pretty darned entertaining.

I looked back at some of his assignments, and aside from their irrelevance to his life except for the fact that they were readings about animals and he likes animals (I like chocolate chip cookies, but too many and I will still get sick to my stomach), there was no context.  For example: there was a booklet of geometry questions.  Across the top, he had written, “NOOOOOOOOOOOO!!!”  That was a hint right there that he wasn’t interested in the assignment.  But I wonder, if the teacher had sat him down and said, “Pikachu is battling Paul’s Electabuzz and the only way to make his volt tackle work is if he can bounce off a tree at a right angle.  Find the right angles.”  I bet he would have found them all in a matter of seconds.

I’ve been told on a regular basis that my son can’t or won’t focus.  He’s not the problem here, I’m starting to think.  He can focus just fine - on the things that interest him.  Is it his job to shift his interest to what the educational system thinks is relevant and important, or is it their job to present the information to him in a way that will engage him?  I won’t even dignify that with an answer.

The point is that we have to stop laying blame against people who are just being who they are, and as caregivers (parents, teachers, administrators, therapists, physicians) we need to get over ourselves.  What we think is significant ain’t necessarily so.  If we are going to have any hope of helping individuals on the autism spectrum, or with ADHD, or any kids for that matter, we need to start allowing for some creativity and flexibility in thinking.  We’ve got to think out of the box a little and stop being so draconian - let’s at least meet them halfway.  Can it really be that hard?  I somehow don’t think it is.

P.S. Rear admiral Robert PEARY discovered the North Pole(this is disputed); Vitus Bering discovered Alaska; Henry Hudson did discover Manhattan, but Peter Stuyvesant did not discover New Jersey.  Pikachu did in fact kick Electabuzz’s butt.  Fat lot of good that traditional education did me.  I’m sure Gus will figure out the truth about all these guys, I doubt I’ve done irreparable harm.

Manic Monday by Mo

In which Gus learns some new colorful language…

Last week I mentioned somewhere (I think) that Gus had called me a freak because he didn’t like something I was telling him.  I told him that it wasn’t a nice word and that he wasn’t allowed to call anyone that.  I thought that was the end of that because I didn’t hear it again.

Until this morning.  Gus and MM were doing a puzzle of the United States, a nice colorful one with all the state capitals on it (we’re perseverating on capitals these days).  They got into an argument and Gus let loose the F-word.  “Freak.”  He whispered it so that only she could hear him because he is too smart for his own good sometimes.

Of course she starts crying and yelling; her honor has been impugned, dangit!

I asked him, “Do you even know what that word means?”  And he looked at me - I notice when he is really interested in something, like a new definition, he’ll make eye contact if for only an instant.

“No!  What does it mean?”  The boy was practically quaking with excitement.

So we explained in terms that a 5 year old could understand, and then I asked him if he would like it if someone called him a freak?  I’d lost his interest by then and got the perfunctory negative response.  And MM got the perfunctory apology.

This is a typical problem with pragmatic or social speech deficits.  You can take a kid with a huge vocabulary and ability to retain information, but he won’t necessarily understand the nuances or the impact of those words, when it’s appropriate to use language in different situations, or that people may react differently to the same phrase.  What he said to me that just earned him a verbal correction greatly upset and hurt his little sister.  So it’s an interesting task to try to teach him about not saying hurtful things.  I don’t even want to think how nuts it will get when the words get even more colorful as he ages and is exposed to more advanced children.

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.

I was tagged by Trish of Another Piece of the Puzzle for this photo meme and decided to play along.  As a rule, I don’t post pics of myself or my kids, but I’m making an exception here - and cheating a little.  Also, my digital pics are not incredibly organized (like everything else) so this is my closest approximation of the 6th.

About the picture: A few years ago, we took a camping trip to a wolf preserve.  Here, Gus is having a chat with one of the wolves.  What we discovered was that although he had trouble communicating with us, he was in beautiful sync with these amazing creatures.  Gus was fond of hiking to the back of the wolves’ compound and getting them to all start howling.  If you’ve never heard a pack of wolves howling together, let me tell you, it is a sound that will send chills of awe through you.  And my son was able to get them to sing.  Incredible.  I get chills just recalling it.

One of the things we discovered at the preserve was that wolves are greatly misunderstood creatures.  They’re quite gentle and have their own special structure within their societies.  They are not violent or intentionally harmful, they just need to get their needs met, whether it be eating or self-defense.  No wonder Gus was able to get them to join his song - they were truly kindred spirits.

Thanks Trish, for the reminder of an amazing trip.

Edit:  Forgot to tag someone!  Okay, so I’ll tag (if you should choose to accept): Maddy, Marla,  Hauteness, Angela, and Regina.

Weeks like this, when everyone is feeling awful and communication is essential, make me truly appreciate just how far Gus has come over the last few years. He’s very verbal now with his main speech issue still being pragmatics. But there was a time that I remember quite well when he stopped developing language.

From around 12 to 18 months, he was acquiring words at a fast rate. Then around 18 months, he didn’t exactly regress, he just sort of stopped. And instead of starting to put those words together to communicate, he fell into a pattern of constant tantrums. The winter between 18 months and 2 was the worst we’ve ever had. I was pregnant and home bound with a child that I didn’t understand.

Fast forward five years and we have a child who can tell me exactly how he’s feeling.  Last night, he had a stomach ache, but didn’t feel like he was going to throw up.  This morning, his head was hurting a little bit, and his cough was “50% better.”

All his progress was a direct result of intensive education from the time he was 2 and a half.  Speech therapy, a brief time with PECS  and ABA for 2 years  all helped Gus to be the boy he is today.

It seems that some organizations may be getting the clue that they need to be a bit more understanding about their customers traveling with children on the autism spectrum.  An article in The Morning Call mentions that Delta Airlines is developing travel guidelines for families with a developmentally disabled member.  Disney World, Sea World and Busch Gardens have passes to allow autistic children to the fronts of lines to cut down on those meltdowns that stem from long waits.

USA Today ran a similar story earlier this week.

During this time of year when kids are out of school and families want to enjoy the summer, the most important thing to remember when traveling with a developmentally disabled child is planning.  It may take weeks to build a child up to being able to make a trip that will disrupt his routine and expose him to a host of stimulation that may be overwhelming and scary.  Social stories and role playing to practice some situations are a couple of ways to prepare in advance.  Make sure you have the things that your child finds soothing.  And don’t be afraid to let people know - like the airline you’ll be traveling - that you’re traveling with a child with a disability.  It doesn’t have to be a huge deal, but it might help prevent some situations.

As the saying goes, “An ounce of prevention is worth a pound of cure.”

 Art by Eric Drooker

What an entitled and snooty place the world is turning into!  While following the comments on a thread at Autismvox, this article, about a Canadian restaurant asking a family to leave because their autistic daughter was having a meltdown, came across my radar.  It was blogged about by Renee at Womanist Musings and subsequently by Kev at leftbrainrightbrain.  The comments and reactions to the original story left me feeling angry and ashamed to be part of the same species as some of these people who seem to think the disabled should just sit home and rot so the ‘better behaved’ folk can live in their perfect little bubbles.  The patron who refused to pay until the family was removed from the restaurant just disgusts me; I hold them more at fault than the restaurant manager.

Here are a few things that some people need to get through their thick heads:

1. Many autistic individuals are unable to communicate.  Sometimes meltdowns happen because the individual does not have the means, which neurotypical people often take for granted, to express: fear, discomfort, distress, disappointment, anxiety or dozens of different emotions and sensations.  This creates frustration that heaped on top of the other environmental stressors are the recipe for a full-scale meltdown.

2. When an autistic person gets into the meltdown state, they are not ‘acting out.’  They are experiencing a physiological response that they are most likely unable to control.  This is not a conscious choice or bratty behavior, and to some degree it happens to all of us even if not as intensely.  According to Mary Sheedy Kurcinka in Kids, Parents and Power Struggles, “When confronted with threatening or frustrating situations, stress hormones surge through our bodies, triggering the brain to be ready for ‘fight or flight’…You’ve been emotionally hijacked.  Your stress hormones have created what’s called ‘neural static.’ You can’t think straight…instead you react instinctively and reflexively.” (Kurcinka, 37-38) 

3. When the parents of an autistic individual are faced with a meltdown, it is stressful for them as well, and their focus is naturally going to be, and rightly should be, on helping their child to become calm - not on someone else’s distaste at being confronted with unpleasantness.  Stares, snotty remarks, threats and forced removal do nothing to help the situation, but instead make things much worse and make it that much harder for the parents to do their job.  It creates neural static in the parents and makes it harder for them to think of the best way to defuse the situation.

What would help in these situations can be as simple as six little words: “Can I do anything to help?”  That’s it.  Maybe the parents will say no, but a moment of support and compassion can help soothe the situation enough to bring that stress level down.  And it may take more than thirty seconds, which in the age of instant gratification is, I know, a mortal sin.  But society needs to get a grip.  The disabled have every right to be in public just like everyone else. 

In a similar situation, I may have taken my son out of the restaurant, but he’s only seven.  I can just pick him up (usually) and go.  But when he’s a little bigger, I may not be able to, so should I lock him away so that someone with puerile and unrealistic expectations can go to a family restaurant for a quiet and peaceful meal?  News flash: where there are kids, there will not always be peace and quiet.  Perhaps if that’s what someone needs, they should not go to a ‘family’ restaurant, or be in any public place for that matter.  I hear that bomb shelters are pretty soundproof.

We went to a wedding a couple of weeks ago, and one of the guests was there with her two year old.  He wasn’t autistic, just two.  He cried through most of the ceremony and was all over the place at the reception.  He even tried several times to run into a party in another room (I guess they had better music).  At no point in time did anyone give her a nasty look.  On the contrary, several people (including myself and my husband) actively tried to help out to give her a break so she could at least grab a bite to eat.  If people would just extend that same compassion and kindness across the board, the world would be a much nicer and less stressed out place. 

It’s a pretty cruel irony that the majority of autism diagnoses being made are for little boys.   We live in a world that is generally less tolerant of boys than of girls, yet these poor boys have it even harder.  Think about it.  If a little boy and a little girl were engaging in the same behavior - throwing rocks, for example - the boy might get yelled at, chased, or maybe spanked by his parents.  The little girl would probably be reprimanded more politely and gently, maybe a finger would be shaken at her.  From a fairly young age, boys start to be challenged by their peers much more aggressively than girls (although that is rapidly changing, I’ve noticed).  At my son’s age - seven - boys will already start with shoving and physical intimidation, whereas, I think it starts a little later with girls. 

I remember having a conversation with my brother years ago about how he noticed his reactions to his own children.  He said that he was often more stern with his son because he wanted him to ‘toughen up,’ while his daughter was often handled more gently.  I think it is fairly typical from the earliest ages to want little boys to learn to ’suck it up’ and be strong, so we tend to treat them more harshly.  When you’ve got a large population of boys who don’t understand the rules, well, we all know where that’s going.

I seriously wonder if Jarett Farrell had been an autistic girl if the outcome would have been different.

I don’t mean to say that autistic girls don’t have it hard or that girls in general don’t have their own challenges ( I have a daughter, too) but I think as far as tolerance goes, boys get a bit cheated.

And yes this has everything to do with the kid at the beach the other day and the young woman at the beach who made a gesture like she wanted to hit my son because he was kicking sand too close to her.  The summer has started off pretty rough so far, but I don’t think it’s fair for me to just ban him from the beach either.  We paid our dues and he has just as much right to be there as anyone else, without being threatened or called names because he’s autistic or because he’s a little boy.