Thursday, February 25, 2010

Very Busy News Day

It wasn't really my plan today to spend all day on the computer. But you know how it goes, some days the mailbox is overflowing with messages and links. Somehow, all those mundane household tasks don't have much appeal.

I won't write much this time; instead will hope you are able to pursue any of the following stories that appeal to you personally.

I will make a brief, POSITIVE, comment on each topic and will deliberately not include the current story about some politician who is saying that having a child born with a disability is a punishment from God. YIKES! What is he thinking????

Time Magazine: "Who's Afraid of Jenny McCarthy?"

I am certainly NOT afraid of Jenny McCarthy, although I usually choose not to watch when she is on one of the many TV shows where she is a regular. I have known so many parents like her - amazingly strong advocates for their children AND convinced that autism is caused by vaccinations and/or curable by dietary changes or supplements. What I like is that she is always positive about her son's autism and his potential. We need more of that optimism. I see autism as so much more complex, and as a lifelong condition, so the "cure" idea doesn't really resonate with me personally, nor the overly simple explanation of a single cause.

New York Times: "Do Toxins Cause Autism?" by Nicholas Kristof

Be sure to read the comments that follow this article. I happen to be a serious follower of Nicholas Kristof, and very impressed by the causes he takes on. He might be surprised at the hornets' nest he stirs up on this one. But I give him tons of credit for entering the fray. I do think we are dealing with a condition that is essentially genetic in origin, but triggered by environmental factors. But our environment is so full of poisons -- how will we ever sort it out? Again, autism is a complex condition; simple answers are unlikely.

Temple Grandin and TED: "The World Needs All Kinds of Minds"

Don't miss this one. Temple Grandin has taught all of us SO MUCH about autism. I love her emphasis on making the most of a person's strong interests and talents. I agree totally that the world NEEDS autism

National and state legislation regarding the use of restraints and seclusion:

My state (Wisconsin) is one of the many that is currently dealing with this issue. It is not surprising at all that people become very emotional when discussing this topic. Having been a teacher for about 30 years, I have some empathy for the stand of teachers and admininstrators that they have to provide a safe environment for everyone in their buildings. But I know that far too little is done to help teachers understand autism and act proactively to support students with serious differences in sensory processing, poor communication skills, and extremely high social anxiety. Restraint and seclusion are invariably over-used once they are introduced as acceptable policy. I am all for modifying the environment rather than focusing on modifying behavior. We must do more to educate everyone!

New Book from Amazon: "Autism and Talent" by Fransesca Happe and Uta Frith, eds.

This sounds wonderful. What is it about autism and genius/talent, anyhow? It's about time we recognize the rich resources of people with autism. Can't wait to see this book. But it is VERY expensive. I wonder if my local library will order it???

Disability Studies Quarterly/"Autism and the Concept of Neurodiversity" edited by Ralph and Emily Savarese:

Lots of great reading here. I will need more than a full day to absorb all this. Mark it as a favorite!

NPR interview (Ralph and Emily Savarese, Jamie Burke and others):

This is my personal favorite, but so far I have been unable to find it online. If anyone finds a link, PLEASE let me know!

Happy reading, listening, viewing

Thursday, February 18, 2010

Those Repetitive (OCD?) Things That Drive Us Crazy

Kids with autism and other sensory impairments often develop repetitive behaviors. Some of these activities can become problematic in the home, school, or community setting. Some can even be dangerous to the child or those around him.

I could draw up a rather extensive list of the types of activities I have encountered over the years: lining up toys, sifting small objects through the fingers, looking at things at odd angles out of the corner of their eyes, spitting (and/or flicking spit - ugh!), screaming, eating non-edible items, and on and on.

Or I could ask those of you who live with a person who has autism to add to the list. I think we'd find a very, very long list with many commonalities and also many chosen behaviors or activities that are highly unique in nature. How many of you know a child who LOVES water play? What about a fascination with trains, doors, light switches, mirrors, Disney movies or Sesame Street?

I work with a young man now who has an intense fascination with bar code stickers and can't resist soda vending machines. I have heard recently about another young man who is repeatedly tearing his clothes. I am sure you get the idea.

What tends to happen is someone (other than the person with autism) decides the activity or behavior is interfering with "normal" functioning. But let's be careful. It might be that the behavior is different or not exactly socially appropriate, but unless it is truly dangerous in some way - such as jumping from a moving vehicle when it passes a vending machine or convenience store that is likely to have such a machine - I no longer am in such a hurry to remove these activities from the person's repertoire.

An example from my personal past: "J" was a cute, pleasant boy who was highly verbal and full of energy, almost always smiling and completely charming. He had gone through quite a few "obsessions" in his young life - including Matchbox cars, lightswitch boxes, laundry baskets, and clocks, among others. His family had been very tolerant and accepting, tending to add to his vast collection of all these items on a regular basis. As we gradually increased his level of inclusion in regular classes during his early elementary years, we (the IEP team of teachers, therapists, administrators and parents) decided that his newest fascination with jumpropes had to be eliminated. It is embarrassing to me now, but we were all in agreement that his habit of carrying a jumprope with him from room to room was somehow interfering with his learning, or maybe his social acceptance, or what????

Believe me, in looking back after all these years, this boy was learning ALL the time and everyone loved him. If those jumpropes were a problem, I am afraid it was the IEP team that owned the problem! But we didn't look at things that way back then, and the jumpropes became a major issue.

We came up with an ingenious plan to ever so slowly make that jumprope grow smaller, cutting a few inches from one end each day till there was nothing left. "J" played along with us, and seemed quite content, happily carrying the shrinking rope through the halls at school until it became so small that waving it in front of him no longer gave him the same pleasure or sense of security that it had in the beginning. And at just about that same time, his success in the school mainstream took a serious turn for the worse.

You see, "J" - whose autism is relatively mild - was living with a tremendouse amount of anxiety, and that jumprope was working better than any medication the pharmaceutical or psychiatric community might have come up with. We took it away, and he fell apart. Waving a jumprope might not be what other kids in the school were doing, but with the right intervention on our part as professionals, we surely could have helped his classmates accept that "J" needed that extra comfort item in order to be happy in school. After all, the kids loved "J" and wanted him to be happy; the rope was bothering US, not them!

Ripping up clothing or throwing a TV to the ground would fall in another category and would need attention before the added costs get out of control. Same for those behaviors that might hurt someone. We can't just ignore, or accommodate ALL preferred activities. I will attempt to address these more serious behaviors in a future posting.

Adding a meaningful communication system to the picture can make a huge difference. If we can find a way for the person with autism to give us some input and insight, maybe we can find a way to work together to choose which behaviors can be tolerated and which need to be replaced. If the child starts to sense that we are sincere in our desire to help and not just imposing the desires of the adults in his life, we can move forward in a spirit of cooperation and respect.

A reliable way of asking and answering yes/no questions is a good place to start: "Do you REALLY need that rope with you right now?" "Do you understand why we don't want you ripping your clothes?" Or maybe pointing to answers from a choice of two, three or four possible options might be possible. The idea is to involve the child in making the plan before changes. "J" was very young, but very wise, and should have been consulted before we took away his jumprope.

I visited "J" in his home several years later. He was thrilled to see me, and happily showed me his vast collection of clocks and other things. He never stopped smiling as he waved his newest jumprope and said to me, "Remember when we tried to get rid of my jumpropes? That sure was silly!" I had to agree.

Thanks for being one of my best teachers ever, "J!"