My Autism Insights

Today I am particularly thankful.  It’s a frosty 12 degrees with a windchill of -6.  I despise the cold above all other things, so why am I so grateful today?

1. For starters, the cold and light snow we got last night meant a 2 hour school delay this morning.  Usually, that would make me groan, but not today!  Delay meant that  a) I had to cancel my client and b)  no bus stop.  Both of which translate to me not having to be out in the cold.  I did have to clean & move my car, but it was a small price to pay in order to be able to stay home near a blazing fire.

2. I am thankful that our pellet stove is (knock on wood) in good working order today!  It’s a pain to have to clean every morning, but it is rather toasty in here, and for only the same cost as it would be to run a fan.  Gus loves it too, and he’s gotten pretty good about being near it for warmth without being unsafe.

3. On a more serious note, I am thankful that Gus has never been in a situation where anyone’s felt the need to physically restrain him.  I came across the story of  8 year old Evelyn Towry yesterday, and it tied my stomach in knots for the rest of the night.  There is something seriously wrong when a group of adults can’t think of any other means of handling a situation with a child that young - a child with known disabilities - that don’t involve physically restraining the child.  Clearly the school is in need of some education.  Best wishes to Evelyn and her family.

Chime in and share what you’re thankful for today.

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.

I’m feeling particularly thankful today after reading some distressing things…

First, I’m thankful to be married to a Social Worker who has a clear understanding of the DSM-IV, which is the manual of diagnostic criteria for the mental-health field.   It’s hard enough to explain what it is, let alone follow all the complicated requirements for any diagnosis.

I am thankful for not only the brief time I spent as a teache, but for the environment I taught in.  I worked with incarcerated youth, ages 12-17, and most of them were eitehr functunally illiterate or had learning disabilities.  It made the job challenging, but it also taught me how to teach outside the box.  As I struggle to advocate for Gus, it really comes in handy being able to understand the different challenges facing the teacher, and it is useful to be able to come up with little tricks to help him and those who are working with him.

Finally, and this is the really important one, I am thankful that I am fortunate enough to have both my children living with me, safe and sound.  Niksmom posted about Frankie Macias, who has been institutionalized since 1994 - on a temporary placement.  Frankie has suffered horrible abuses, has been denied access to his family, and even though a community-based placement has finally been obtained for him, the Department for Developmental Disabilitiesin New Jersey has refused to release him!

So, please sign the petition asking Governor Corzine to have Franie released so that he might have a chance at healing and living his life.

Have a great night, and please share your gratitude in a comment.

The Autism Self Advocacy Network has created a public service video in response to the very offensive language used in Ben Stiller’s newest creation, Tropic Thunder. 

I’m surprised that Stiller, who I’ve typically liked as an actor and comedian, would be so blatantly offensive. 

A coalition of disability advocacy organizations are calling for a nationwide boycott of the film, which uses the word “retard” repeatedly in relation to Ben Stiller’s character: an actor who plays a character, Simple Jack (the name itself is pretty self explanatory and insulting), in an attempt to win an Oscar.  Satire is one thing; blatant disrespect and abuse is something entirely different.  And they probably didn’t even intend to be offensive; they probably never even gave the word a second thought, which speaks volumes about how the disabled are disregarded in this country.

Shame on Ben.  I won’t even be watching this one on DVD.

Edit:  Support the boycott

image from the Asperger’s Express

I couldn’t make a post yesterday because, honestly, I was just too disturbed by what I’d been reading in the morning. I needed to take a step away from autism in the news.

Maddy at Whitterer on Autism posted about state agencies in the UK removing children from families, not to provide them better, safer services, but cheaper services. LeftBrainRightBrain discusses as well. And it’s not just in the UK! Remember Nate Tseglin?

Then there was the New York Times article about the increase in restraint usage for autistic students that Kristina Chew talked about. The comments were particularly enlightening and saddening to me.

Take these two trends and you’ve got the makings of almost all my worst nightmares. And people wonder why I am so insanely overprotective of my children. How can I not be when I know that one of the safer places I can send Gus to might really be the most threatening?

And one more link to The Asperger’s Express about ABA (can be useful in tandem with other therapies) with a little blurb about restraint usage at the bottom. Reading this article reminded me of the reasons I had rejected ABA at first, until I found someone who used the theory in a way that wasn’t overly dependent on discrete trials or heavyhanded.

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.