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.

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.

As I was all geared up to start ranting about Dennis Leary’s disgusting comments in his new book, Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid, my husband made a point that completely defused me, “Why is anyone surprised?  He’s a twit.  He’s always been a twit.”

Well…yeah.  Can’t argue with that logic.   The offensive material:

“There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a [bleep] what these crackerjack whack jobs tell you - yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.”

Some links to a few of my favorite blogs discussing the matter:

Autismvox , A Life Less Ordinary , Memoirs of a Chaotic Mommy , and Marla Baltes.

In fairness, here is a link to E!Online in which Leary feebly attempts to defend his words.

You know, I had gained a little respect for Leary when I watched a few episodes of Rescue Me.  I thought that maybe he’d grown up.  Apparently not - he still goes for the cheap shot and the easy target.  I may not be surprised, but I am still offended that he would call so many moms “inattentive” who are really giving their all to help their children, and that he would refer to so many awesome kids as “stupid.lazy or both,” who have to work infinitely harder to get through a day than their typically developed peers.  I mean really, how much more attentive could we be?  If I was any more attentive to Gus, the poor kid would get a hernia from lugging me around like a backpack.

I think this moron got his C’s mixed up.  A comedian is someone who makes people laugh with things that are actually funny.  A coward is a loser who would take a cheap shot at someone, turn tail, and then hide.  Don’t hide behind your lame excuses and justifications, dude.  Just admit that you were wrong, recognize that you weren’t funny, and let’s all move on - without my, or probably any autistic child’s parent’s, money in your pocket.  I prefer not to deal with people who “suck” as you so clearly do.

I read about this yesterday: ADAPT , an advocacy organization working to get better support for people with disabilities to have better housing instead of being relegated to institutions or nursing homes, had an interesting experience with the presidential nominees’ campaigns.

ADAPT took a delegation to Washington in order to meet with HUD (Housing and Urban Development), the Obama campaign, and the McCain campaign.  These meetings occurred separately.  In a nutshell, HUD was unable to help and politely communicated as such, the Obama campaign people listened respectfully.  The McCain campaign, well, they were not quite so nice.  They had more than 15 ADAPT members arrested because of their non-violent protest.

So just to be clear, there was a group of about 100 people peacefully protesting for better living conditions for people with special needs.  And the McCain campaign not only refused to even accept materials for proposals, but had the  protesters arrested.  Oh, and there was at least one injury as a result.  This is the same campaign that Sarah Palin became part of when she pledged her friendship to families of people with special needs.  I guess the same pledge doesn’t include the actual PEOPLE with said special needs.

Yep, thanks, Sarah.  You’re a real pal.

 image by Linda Bucklin 

Last week I posted about Michael Savage and his idiotic comments about children with autism.  AFLAC led the way for sponsors to drop his show.  Well here’s what followed:

Sponsors who have dropped Savage:

Home Depot

Sears

Direct Buy

Cisco

Radio Shack

His show has also been terminated from radio stations in Mississippi, Virginia and Ohio.  There was a protest last Friday on Wall Street organized by Autism United whose president, Evelyn Ain, has stated they will be protesting and doing what they can to convince his sponsors to withdraw their support from his show.

Do you think Mr. Savage, if he survives this debacle, might think twice about the beehives he’s poking from now on?  Can’t say I feel sympathy for him though.

  image from USAToday.com

I purposely avoided this controversy for two reasons.  First, because I know what my son is and what he is not.  He is a very bright child who happens to need extra support in several areas in order to function in the world.  He is not by any means a fool, moron, idiot, or fake as Michael Savage described most autistic children last week.

My second reason for not discussing it was because I didn’t want to add to the Savage getting what he really wanted from making such nasty statements: attention.  He certainly did that, got attention.  So much in fact that one of his big advertisers, Aflac, is pulling their funding from his show.  They spent about $90 million last year.  Oops!

He tried to do some damage control, but I sincerely doubt the sincerity of his stated intentions.  So I’ll just be happy that all the attention has come back to smack him right in his big mouth.

A few days ago, I posted about the Seymour family in Canada who was asked to leave a family style restaurant when their autistic daughter succumbed to a meltdown.  I put a link to the post in my private journal, and my good friend left a comment that moved me so much, I felt it should be seen by a larger audience.  So here are the words of Spindlewand:

“There are places where I can understand patrons expecting a level of silence and others where I would not. A family restaurant is no place to expect silence.

DH and I, when we had the chance, would frequently go to Applebee’s on a Friday night. We were usually the oldest people there, unless a grandparent showed up after a dance recital or something, and while I was occassionally annoyed by loud patrons, they were clearly the kind of loud patrons who are just - loud. No particular “reason” for it other than inconsideration. Even so, we never complained. Some people are going to speak loudly. The local Soccer/Track/Wrestling team is not going to be subdued unless for some bizarre reason they are out celebrating a loss. It goes with the territory. Any restaurant airing sports events on a TV patrons can see is going to be a noisy place.

One of the most impressive things I have ever seen happened at a wedding rehearsal dinner. It was an informal affair, with a lot of people who did not really know each other very well, and the bride’s aunt went into an epileptic seizure. One of the Groom’s friends looked up, said something like “Do you need us to do anything?” and when she was told no, everyone went back to their previous conversation and ignored it - not because they were insensitive, but because they felt that the person involved would prefer not to be the center of attention, and they were perfectly correct. It was a perfect handling of a difficult situation.

I don’t think most people really know that much about Autism. Eveything I really know about it I’ve learned from you. People in general may not realize that what they are witnessing is to a larger or smaller degree involuntary. However, once they are aware of that, they should understand that involuntary means you can’t help it and either politely ignore it or politely and quietly ask if any help is needed.

One would hope that the days of hiding the disabled away behind closed doors is long behind us, although so many things we wish were long behind us aren’t quite yet. Some people who are not disabled assume that they will always be young, healthy, in control of their lives and actions, etc. But you know what? I have been in at least four car accidents that you would have thought might have left me physically disabled. I have been blessed by God to walk away from all of them, one way or another. That can happen to anyone at any time. Maybe Autism can’t, but a number of other things that affect mind/body connection can.

I suppose it comes down, like everything else, to two simple things - your view of what people are and therefore what they are entitled to, and how close to that ideal you manage to keep yourself. I suppose these people feel that the “unhindered” are more deserving of the opportunity to eat outside the house than those who are in some way “impaired.” If not, they are not just inconsiderate, they are also hypocrites.

Yes, there are places I don’t take my own kids, who are each totally capable of wrecking a high Mass in their own way. We did not go to the tea shop I’ve been dieing to go to for Mother’s day because one look at the interior on the website alerted DH to the number of things the baby would be in danger of breaking, never mind whatever general mayhem he might set in motion. I can’t afford to eat in the kind of restaurant BH’s occasional loudness might really disturb, but if I could I might ask for a very early sitting, or a very late lunch - timing it when the fewest people would be around to be disturbed, if I thought it was a good idea at all. That said, those places are few. He goes everywhere with me and if anyone doesn’t like it the only reason I would not ask them to kiss my *ss is that they would not be good enough to.”

I read another comment on a similar issue that suggested parents of autistic children were too personally involved to see how these companies (airlines, restaurants) could be justified in their decisionmaking.  Well, Spindlewand doesn’t have an autistic child, and she seems to have a very clear understanding of the heart of the matter.

 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 seems like it should be second nature for a big brother to come to his little sister’s defense, especially when someone of his peer group is the offender.  Except in the case of a child who normally does not take notice of said peers, it’s pretty extraordinary to see him stick up for his sister.  Even if the attempt was unsuccessful.

Gus had just woken from a nap when we arrived at the playground, and the oppressive heat and humidity only served to make him a big ball of mush.  He slumped over the steering wheel of a toy tractor and just lazed around watching the other kids play.  Meanwhile, M. decided she wanted to play with one of the puzzle toys under the canopy part of the jungle gym.  The six year old who had staked his claim to the territory ruled differently.

“You have to be six to play in here,” he said.  M. tried to stand her ground, she’s a tough little cookie, but he wouldn’t cow to her demands or her tears.  She came running to me.  Before I could finish giving her the appropriate words to use, I heard Gus over at the jungle gym interrogating the little bully.

“What did you say to M?” he demanded.  Wow!  Great going! I thought.  I listened closer.

“Did you tell her you were going to eat her up?”  Okay, that’s a little tangential, but he’s seven; they do that.  “Did you tell her to do the laundry?” 

Er…

Yeah, that wasn’t remotely an effective intimidation tactic.  When he started perseverating on the laundry question, the little bully pretty much just ignored Gus.  M. had calmed down by then, confronted the boy very politely (with a couple of nudges from me) and the boy’s father stepped in.  She got to play with the puzzles.  Gus, had long since gotten distracted by something else.

But he noticed, and he tried.  He’s getting it!  HOO-rah!  Now that’s what I call progress.  I better watch what I ask her to do around here from now on, or I may find myself on his bad side.

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.