'I-28Sfuuy-WR10okMSia3VYeZTm2RHA2LZDel59TlF8' name='google-site-verification'/>www ghs.google.com 6dseurqgapmn gv-v6egtfduggmq3k.dv.googlehosted.com Autismwarriormama: Behavioral Therapy Across Settings

Living with Autism


April 9, 2011

Behavioral Therapy Across Settings

1999. For months, the After School Program had issued dozens of reports to San Diego Regional center documenting Jamey’s need for a one to one aide, “Jamey continues to require 1:1 staff assistance due to self-injurious behavior.”

“During the Recreation Program Jamey needs constant supervision because of his controversial medically prescribed skin shock therapy.” It took forever for Regional to fund the one to one aide in the after school program. At a long meeting with Jamey’s Regional Center staff, I said: “I’m confused. You don’t support the skin shock therapy, but you haven’t provided one to one support for Jamey in order to protect him from hitting himself.”

“Approving the one to one aide takes time,” muttered a case manager, if indeed there was any management outside of a episodic phone update.

 "Look,” I said, breathing out and shaking my head as I felt angry tears rising.“It’s been over a year! Aren’t you’re the one who said one to one support is an alternative to skin shock therapy???!” None of these people made any sense.  And they liked it that way.
Not applying Jamey’s therapy across settings violated every behavioral principle the specialists opposing skin shock claimed to honor. This illuminated the worst kind of hypocrisy and narrow-minded thinking. The kind that leaves you pinching your nasal bridge and eyebrows, as you lay awake, skin tingling, plugging your ears and blinking— praying these people would just quit their jobs and find another place to abuse their authority and be ineffective.

I glanced around the house. Where were the experts now? Why hadn’t they called to inquire of Jamey? Amazingly, the fact Jamey regularly beat himself and non-aversive or conventional therapies didn’t stop him—didn’t matter to ideologists. To persons opposing aversive therapy, Jamey wasn’t a person—he was a threat—a tangle in their tightly woven ideology.

There was a desperate air of unreality the days when Mark worked and respite hours expired. “The request for the one time only respite of 12 hours, for the rest of month was denied,” said a letter I received the previous week. Yes, Regional Center had denied the extra respite I requested months before I would have my tonsils taken out. Hence, Melanie, who by this time had absorbed responsibilities beyond her years, helped the best she could. More than once, she slipped a movie into the VCR, rolled out a sleeping bag, got Mike a drink of water or found Matt’s kaleidoscope while I tended Jamey. Just like she had all the other times Regional denied extra respite hours. Funny thing is, I discovered families with mildly disabled children who had more respite than we had. So, clearly the denials were personal. Retaliation, you might say. Retaliation didn’t stop me from pushing Regional Center to provide more respite and the one to one aide for Jamey in his Regional funded Recreation program I had requested. A request repeatedly diverted and forgotten. 
Around this time, a school OT wrote: “Jamey communicates his wants and needs by walking toward or taking a desired item…Jamey will smile, laugh, and may demonstrate a skip in his gait when he is in a happy mood, and will communicate displeasure through crying, resistance to task, and will occasionally display self-injurious behavior when angry. Jamey’s self-abuse includes hits to head, mainly to ears and sides of face. Self-injurious behavior has decreased significantly during his Occupational Therapy sessions, primarily due to Jamey using his medically prescribed SIBIS protocol at home and during his day school program. Jamey likes to swing on platform swing, bounce on large trampoline and enjoys deep pressure massage. He understands difference between rough and smooth, hot and cold by moving his hands either away or toward the stimulus. He visually tracks horizontally and diagonally with maximal head rotation and vertically with minimal head rotation. Eye convergence is normal. Can relocate item when it’s in his direct line of vision otherwise won’t seek out the item.

Another scheduled IEP meeting. Another report: “The SIBIS has been used successfully with James at school.” With the success came plans of fading the device. “I don’t understand,” I asked. “Why fade it if it’s working?” “The Hughes Bill is still in effect,” said Ms. Bowen. She wrote: “The IEP team agrees the behavior plan to address James self-injurious behavior is as follows: The skin shock will be administered after one hit to the head. The SIBIS will be worn for 30 minutes after each head hit.” I accepted the new plan, half-hoping Jamey would respond to alternative methods of controlling the self-injury without wearing the device.

1999 Another behavioral specialist hired by Regional evaluated Jamey’s case wrote: “The general family situation is extremely stressful. Since 1992, 13 attempts have been made at professional behavioral assessment and intervention for Jamey. Antecedents associated with the behavior include periods of inactivity, environmental over stimulation, task avoidance, frustration related to inability to communicate needs or desires, and when physically ill. A number of self-injurious behaviors have occurred without obvious antecedents. Over the years, numerous consequences have been attempted to intervene upon Jamey’s self-injurious behaviors. These include: sensory stimulation, redirection, and differential reinforcement of other behaviors, pharmaceutical interventions, extinction, close supervision, arm restraints, protective head equipment, physical restraint, and use of SIBIS…When the SIBIS was first permitted in the home setting, school personnel were legally prohibited from utilizing it. When I became involved in case (1997), frequency and intensity of the self-injury was significantly higher in the school than at home. Between 1995 and 1998, non-aversive techniques were utilized at school with minimal success…The etiology of Jamey’s self-injurious behavior is rooted in the autistic syndrome. In 1995, the hospital bio-ethics committee approved the use of skin shock. In [1997 and 1998], the state board of education granted a special waiver for Jamey’s skin shock device. Jamey appears to be one of the rare individuals who are driven to engage in self-injury because of a compulsive drive…while the use of skin shock has greatly reduced the frequency and intensity of behavior, it has not been eliminated; a condition commonly found if aversive procedures are not used in conjunction with a consistent plan, across settings, to teach more adaptive behaviors…Because Jamey has demonstrated a good ability to come under stimulus control of environments where SIBIS is used, it is possible to fade the skin shock in a short time. However, due to the spontaneous recovery phenomenon, it will be to retain the option to use the SIBIS or rare occasions…In Jamey’s case, skin shock appears to be the most critical part of treatment to prevent severe physical damage.”
Years later, skin shock therapy still radically reducing his SIB where SIBIS device was allowed, Jamey was still attending the After School Program. No skin shock allowed. This must have been confusing for Jamey. Nevertheless, a March, 2000 report written by the After School Director and submitted to Regional, said: “Jamey is an eleven year old boy…During leisure time Jamey requires 1:1 supervision. Kim states someone must know where he is at all times. At home, Jamey walks up and down the halls looking at pictures. He loves baths and bouncing on his bed. Specific skills that Kim would like to see Jamey work on in the Recreation Program include: exercise and exposure to different people, places, sounds, tastes and smells…Though Jamey is in his own world, he grabs food and drinks off the table. This is a big change from his pre-SIBIS days when all he wanted was to isolate himself and hit himself in the head…Jamey is a very enjoyable and challenging young boy, but responds to staff that learn to anticipate his needs. Jamey is unable to use neighborhood care providers for several reasons. The threat of self-injurious behavior is the biggest concern. Jamey is safest where people know him and have extensive experience with self-injurious behavior…Jamey doesn’t use signs or talk, but makes vocal sounds and communicates through non verbal behavior, such as seeking items with his eyes or grabbing object…Because Jamey communicates visually, all items of interest should be in his field of vision…Jamey doesn’t like crowds unless he’s wearing his earphones. Noise may upset him. Occasionally, Jamey will bite staff if they try and stop him from hitting himself. The SIBIS therapy is used at school and home. The SIBIS device is not used in the Recreation Program.”

1 comment:

Chris said...

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