My Autism Insights

Mary at Bon Bon Gazette and the NJ Moms Blog did a couple of posts on this on this topic that I saw last week, and then I read this comment from a reader to my weekend post:

“I also have a son with aspergers syndrome. Justin is 12 yrs old a very quiet pre-teen.  Who is a 7th grader in Jr. High. My main concern is that the kids at his school has started seeing him as an “easy target”. Justin won’t tell on these kids because he doesn’t want to get people in trouble. He is such a kind hearted boy and wouldn’t even hurt a fly. How can I get him to understand that what these kids are doing to him is very wrong and he needs to get help from an adult to put a stop to this once and for all? Please somebody help me and tell me what I should do as a parent!”

It’s disturbing that bullying is such a prevalent reality for so many students with special needs.  With most kids on the autism spectrum, they may not look any different from their peers, but they often exhibit behaviors or a lack of social savvy that makes them easy targets for bullies.  The harassment typically becomes a serious issue around middle school age and can last through high school.  A conversation with Gus’s counselor revealed that students on the autism spectrum often don’t understand that they are being mistreated; they can think the abusers are their friends and that must be the way friends act.  She mentioned a high school Aspie who would do some pretty outlandish things at the urging of other students because he didn’t realize they were mocking him.  Another child began to view the physical abuse he was receiving at school as a ‘ritual’ and it fed into his perseverative tendencies.  He would actually seek out the bullies because the abuse became his pattern until he was hurt and the school nurse intervened.  The victims will usually not speak up for themselves, and the bullying may not go unchecked until there is some severe incident or the victim’s behavior begins to change and a parent, teacher or counselor takes notice.

Schools are becoming more responsive to these incidents because the situation has gotten so bad.  Although there are federal laws (Rehabilitation Act of 1973, Americans with Disabilities Act of 1990) protecting the disabled against harassment in any educational facility that received public funding, on a practical level, it doesn’t offer much in the way of prevention.  So what can parents do to protect their children from being tormented by their peers?

Be Aware

You can’t be with your child all the time, but you can be aware of any changes in your child’s behavior or appearance.  Notice if your child is coming home dirty, with torn clothing or with bruises.  Changes in behavior may include reluctance to go to school, an increase in behaviors that indicate distress (like stimming), changes in sleeping or eating, flinching, aggression or out-of-the-ordinary withdrawal.  Also, don’t be afraid to ask questions of teachers and classroom aides to stay on top of what goes on during the school day.

Your IEP as a Tool

While you can’t directly have antibullying written into your child’s IEP, there are goals that can be written in to help reduce the risk of bullying.  Goals that specifically work to increase social skills like recognizing social cues, assertiveness, or avoiding and handling bullying can be helpful.  In addition, it may be possible to request services to prevent bullying such as staff monitoring in areas where bullying is likely to occur.  If bullying has or is occurring, counseling support should be made available.

Educate the Peers

Emily at A Life Less Ordinary has had to deal with bullying and came up with a fantastic idea to educate her son’s peers about her son so that they would have a better understanding of some of his behavior.  If Bullying Prevention programs at schools took a similar approach and educated their students about autism and other special needs, it might help reduce the ‘otherness’ of the special needs students.  See what your child’s school or district might have in place for conducting this kind of diversity training.  If nothing’s available, be proactive and try to get something started.  And remember that kids who are neither bullies nor victims can play a role in bullying prevention as well by being encouraged to take a stand against it, as noted in the Autism Asperger Publishing Company’s Winter 2006 Newsletter, which was devoted to the issue of bullying.

Who Should You Take the Issue Up With?

As much as parents want to protect their child’s well being, it is possible to make the matter worse if you address the bully directly – it can just cause the situation to escalate.  But you can’t ignore it either.  Likewise, contacting the bully’s parents might have an adverse effect.  If the incidents occur in school, start with your child’s teacher.  If that doesn’t help, try the school principal.  In severe cases, or situations where the school administration can’t control the situation to keep your child safe, remember that the law is on your side if you have to contact local authorities.  If you still don’t feel that your child is safe, home schooling may be an option to consider, at least for a while.

Other reading

Some available resources:

Preventing Bullying of Children and Youth on the Autism Spectrum

Bullying (and Asperger’s Syndrome)

Bullying Among Children and Youth with Disabilities and Special Needs

NAS: Bullying: A Guide for Parents

And The Gray Center has several books and a DVD available on the topic of bullying as well.

If you have anything to add, or if I’ve misstated something, by all means, add to the discussion of this very important topic.

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.

“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?