One of my favorite online discoveries this year has been the guys at Asperger's Experts. They are Danny Raede & Hayden Mears, two young men who were diagnosed with Asperger's (an autism spectrum classification) early on and now have a business offering dvd's and online consultation to people on the autism spectrum and their families. They also have a number of helpful videos that are free online. I love their insights. Of course, a lot of the information they share is what parents of children with Aspergers/Autism instinctively know and practice every day. But as teachers, we don't live with the students and don't always have insights into their behavior. In fact, there is a whole lot of misunderstandng and invalid assumption out there. So, without plagiarizing any of their material, I will share a few of their ideas:
1. Too often, people who work with a child on the spectrum focus first on social skills, communication and academic achievement because those are the most obvious issues. According to AE, however, the child is not receptive to learning these things because he is "deep in defense mode." The focus needs to be on getting him out of defense mode first. Then the learning will follow.
2. Defense mode begins as a sensory overload. A child on the spectrum has way more going on in his head than it may appear-- his senses are amplified and can bombard him like a hurricane when people around him feel only a gentle mist. Too much noise, odor, visual stimulation, touch, tastes... things that a neurotypical person might not even notice can cause the affected child extreme distress. The AE's "Sensory Funnel" at left shows how this overwhelming sensory input can be the bottleneck for the child's growth. Carly Fleishmann, a teen with autism, describes the overwhelming visual input: "I take over a thousand pictures of a person's face when I look at them." She also explains that her shrieking and hand-flapping is often a response to the sensation of ants crawling all over her body. Imagine how hard it would be to focus on social skills when your brain is under that kind of attack!
The distress can be neurological, but it can also be due to physical issues; the AE guys note that gastrointestinal tract problems are common to children on the spectrum, and suggest that the vagus nerve may play a role. (I'm not sure whether gastrointestinal issues trigger the vagus nerve or the other way around... chicken/egg... all I know about the vagus nerve is that I was told mine was "overactive" because it causes me to faint under certain conditions, but that's another story.) This may be why dietary changes help some affected children. A child with both autism and food sensitivities will likely feel the effects of the food reactions more keenly than a neurotypical child. Removing the offending foods can cause great relief.
3. The key to teaching a child on the spectrum, according to AE, is to get them out of defense mode. AE estimates that 95% of an affected child's energy is spent defending from perceived threats-- initially from sensory overload, but as the child gets older some of the threats become anxiety-based-- more on that later. But that leaves only about 5% of the child's energy left for daily functioning-- everything from getting dressed to doing homework. No wonder meltdowns are so common!
4. For younger children, getting them out of defense mode means you try to reduce sensory issues as much as possible. So you have to identify what the issues are, and accommodate them. Noise-blocking headphones, soft tagless clothing, fragrance-free detergent, dependable routines-- whatever can be done, avoiding triggers in every way possible is the basic game plan. Some families find that homeschooling provides a more controllable environment for their children. Brick-and-mortar school does provide a dependable routine, but this advantage can be offset by the sensory overstimulation of a bright, noisy classroom with all its bells and smells.
5. A child in defense mode needs a "safe place" of his own. This is a physical place with as few sensations as possible, or at least controllable sensations. AE recommends including an item in this place that makes them feel safe-- a flashlight, stuffed animal, etc.-- and perhaps something weighted. (One of the AE guys used to use a beanbag chair that he would place on top of himself.) So maybe the child has a room that he has decorated himself (controllable visual sensation), with headphones to block noise and a flashlight to keep him safe, and a beanbag chair to lie under.
6. The child in defense mode needs to increase his trust in the world around him. Routines develop trust. He also needs to develop trust in relationships, beginning with the people in his life. "Frequent, personal, positive, low-risk" interactions will build the kind of relationship a child needs. Not surprisingly, those kinds of interactions will build trust in ANY relationship with ANYBODY, but, to be honest, the child in defense mode may not naturally inspire this kind of treatment. It is easy as a parent to become overwhelmed, or as a teacher to focus on unwanted behaviors, and forget that there is a child in there.
7. Not all threats are sensory. AE explains that as some children with Asperger's/Autism grow, they may begin to spend a lot of energy on defending against all the "what if"'s they can possibly imagine, making endless "contingency plans." This is Murphy's law on steroids; the Boy Scout motto gone horribly wrong. As they fixate on worst case scenarios, their anxiety builds. Because a lot of this anxiety is based on their lack of trust in their own ability to cope, it can be combatted by helping the child document evidence to the contrary-- recognizing his own successes, maybe even running an experiment to see, for example, just how many times he spells a word correctly vs incorrectly.
8. As the child matures, Raede and Mears recommend building up his tolerance for sensory or situational triggers with "purposeful, voluntary exposure." Voluntary means the child agrees to it-- whether to earn a reward or prepare for the unpleasant certainties of the family trip to Disneyland-- and purposeful, of course, means there's a goal in mind or a reason for it. So Mom and child agree ahead of time that every time he handles an unexpected event without a meltdown, he earns ten points (toward a reward), and then on the way to the park she purposely but unexpectedly stops by the grocery store instead of going straight to the park. No meltdown = ten points.
9. Anger is often an issue. AE describes the formula for anger as "What should be is not what is." In other words, the child has expectations, assumptions, or rules that are not met, and a meltdown occurs. As the child develops trust in you, you may discuss with him whether his "rules" are fair or valid. Is it valid to make a rule that you only get ten math problems for homework, or might there be days when there's more to practice and review? Of course, such a discussion is not possible when the child is stuck in defense mode, so trying to argue with a child in the middle of a meltdown, as parents will attest, is counterproductive. As you would when communicating with anyone, discuss the issue when everyone is calm and relaxed.
10. Avoidance is another topic they cover. Avoidance, according to AE, is the main motivation for playing video games obsessively. It can also lead to isolation and refusal to participate in certain activities. For younger children, you may just have to "play their game." Allowing a child to avoid interacting with noisy people at the family reunion by letting him sit in a corner playing on his tablet or reading a book may give Aunt Susie conniptions, but it will preserve your child's sanity. As he matures and grows in trust, he can build his tolerance for unpleasant social situations at his own pace. Other avoidance issues may be connected to past traumas-- a scary dog, perhaps-- or based on imagined contingencies. Sometimes calculating statistics can help relieve the anxiety-- how many times have we been to the store without being attacked by ninjas? And sometimes logic just gets in the way: one of the AE guys relates how he relieves his fear of flying by imagining a solid support under the airplane as it flies.
The Aspergers Experts have a lot more detail on their website and videos, including personal examples and stories. They are definitely worth a look for any teacher who has a student with an autism spectrum personality.
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