Wednesday, December 15, 2010

Mother with Aspergers shares insight into autistic behaviors

An Article Found at: "Autistic Self-Advocacy Network"
"Melody is not only raising two sons with Autism Spectrum Disorders (ASD), she also lives with one herself. Like my 7-year-old son Ethan, Melody lives with Asperger's Syndrome. Thanks to her unique point of view, Melody often has very helpful ideas and suggestions for other parents raising kids living with ASD.

Click "read more" to complete the article 

With the summer months now upon us and many of our children home from school every day all day long - which is a big change in routine and environment -Melody addresses the subject of whether or not to focus on "non-harmful behaviors." One example of a non-harmful behavior often seen in children living with ASD would be "hand flapping."
For readers not raising a child with ASD, this particular behavior is often called a "stim" because it is considered to be a self-stimulatory behavior. Children can have many "stims" or they may only have a few.
Ethan does not have a great many "stims" but he does have a few. It really seems to bother my husband when Ethan twists his own hair around his finger at the top of his skull. (I find it interesting that Clay Marzo, a professional surfer living with Asperger's Syndrome whom I find extremely inspirational and profoundly gifted, often exhibits this same "stim" in some of his surfing videos and interviews.)
Honestly, sometimes my husband and I disagree about which of Ethan's actions justify focus and which others should be ignored; Melody's perspective and examples are extremely helpful. You can bet that I'll be sharing this guest blog with my husband as it is a great conversation starter on the subject, one which I hope will help us find more common ground and help us determine how to handle certain "non-harmful behaviors."

Let's Meet 'Eye to Eye'
By Melody Latimer
In the past, I've tried to understand, as a parent, why other parents feel the need to change non-harmful 'behaviors.' I've questioned others during Q&A sessions, in support groups, and on internet lists. I've tried so desperately to understand this need; I still don't fully understand it.
However, I realized something. Most parents don't understand why 'we' don't see it as a priority. As I understand it, most parents don't want their children to be picked on and bullied because of their 'behaviors.' I'm choosing to use the quotations because to those of us on the Autism Spectrum, they aren't really behaviors, but automatic responses to our senses. An example that most normal people can understand is shivering because it's cold.
I thought perhaps though, I can explain the logic behind keeping these 'behaviors' on a low priority may be beneficial to your child. I'm going to use both myself and my children as examples throughout, so I do apologize if this goes a little long.
As I sit here, at 10pm, I have several senses being affected as I type. There is the noise from the refrigerator and freezer running. There's a ceiling fan and a small box fan running. My husband is playing a game. Periodically, he will speak. There's noise from my typing as well. These are all the sounds I process constantly. They aren't background noise, and each one affects my ability to keep my mind on what I'm doing and saying.
This doesn't put into effect any visuals or physical sensations. There's a list of those as well, but due to length, I will not go into full explanation of those. For most people, they may have a heightened state for one of their senses, but rarely all their senses. Some Autistic adults joke that most normal people would not be able to handle all the constant sensations we do.
When you realize all of these sensations, it's hard to imagine why it'd be important to make someone keep eye contact, stop flapping their hands or rocking their body. There's more to it than that though. For this next example, I'm going to show you a part of my 6-year-old's world.
His name is Daniel and he attends a mainstream class in Plano ISD. He is verbal, but it doesn't come easy. He started making complete sentences around 2 months ago. To learn to say new words, he has to break them up into individual sounds. Once he has the sounds together, to make a phrase, he has to break them up into individual sound-words. To make those phrases into sentences, he once again has to break them up into their sound-word-phrase.
When he first started to say sentences, it took him up to a minute to complete a 6-word sentence. It was absolutely beautiful, and he was able to restate that sentence completely without having to place the words together like he did the first time. For each new sentence with new words, he still has to pause and put it together slowly. How would he have time to notice he's standing on his toes?
Finally, we are to Stephen, my 5-year-old who is also mainstreamed. He can talk circles around any kid his age. Often he literally will "talk circles" around kids as he needs to stay in constant motion. That's for another day though. My little Stephen has, like many other young children on the Spectrum, poor fine motor skills. "Pointer finger-thumb, pointer finger-thumb, pinch your pencil." "Keep your paper still." He'll draw a circle here, write his name there. He tries really hard to use his fork and spoon as well. You can see the intensity in his eyes as he tries to do it. How is he supposed to also remember to not move or squirm in his seat?
I know these are only small pieces. I know many of these stories are not new. What I want each parent to remember is that often all of these things are going on at once. We must hear what our 'superiors' say, while we're writing on our work, respond, as well as keep all these thoughts together while taking in and trying to filter all the other 'background noise' in the room. If you were doing all of that, do you think you could remember to not shiver when the temperature drops below freezing?
Of special note: Melody runs a support group for adults living with Autism Spectrum Disorders (ASD) and also hosts a website dedicated to helping other parents who live with ASD. Anyone interested in joining the support group should visit Melody's website and feel encouraged to contact her. Further, Melody suggests that anyone interested in learning more about self advocacy should visit The Autistic Self Advocacy Network website."
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