Leelo Progress: The Official Version

The bulk of what follows is excerpts from Supervisor M's progress report dated 1/20/09. Much of this data was collected when Leelo was still in his terrifying November/December 2008 Abilify phase -- a phase from which we are still recovering despite the fact that Risperdol has had such a generally lovely affect on Leelo's behavior and contentment, a phase that has left me in suspended animation and leached out any interest in writing or indeed most things. Though I did recently send the following email to a local parents' group, prefacing a summary of advice I'd been given re: autism, aggression, and antipsychotics:

It has taken me four months to write this summary because I wanted to add our own experience, and I wanted it to be positive or at least hopeful. That was unfortunately not the case with Abilify; even at a low dose it increased my son's aggression to the point where we stopped taking him anywhere or having friends over [though we made exceptions for my entire family during the holidays, obviously, and also for out of town friends], made him unable to sit still or focus on/complete simple tasks, made him so hungry that we had two choices: feed him all day or be assaulted (he gained a lot of weight), and disrupted his sleep patterns so that he was waking between 3:30 and 5:30 AM daily. Obviously, Abilify was not the right drug for him, despite the reports ... as to how other children benefitted.

I am happy to report that we have seen only positive results since we switched to 5 mg of Risperdol 2x/day (it has been eight weeks so far). My son has become focused, happy, sweet, affectionate, chatty, connected, and the star of his SDC. He has simultaneously started trying new foods while losing five pounds of his Abilify weight. For the first time *in his life*, he goes to sleep without a fight and on time, yet gets a full night's sleep. I am considering putting a small shrine to Risperdol in our entryway. And I am yet again fascinated by how very differently our children with autism respond to identical treatments.
Wouldn't you know, almost within 24 hours of writing that email, Leelo spiraled into another aggressive episode, directed mostly towards Mali, and me. We've resumed Claritin after a hiatus of several months, and are crossing our fingers. Anyhow.

Emphasis for consultation this quarter has been on reducing aggressive behaviors, and reducing stereotypic use of straws during recess by increasing engagement.

Incidence of aggressive behavior: hitting self, hitting others
At school, Leelo’s aggressive behaviors [decreased] from last quarter. However, staff and family reports and observations suggest that the intensity of Leelo’s hitting has increased, as he is growing larger and stronger.

At school, hitting self and others continues to function most often to escape demands which cause frustration and confusion, and to gain access to preferred tangibles and activities (usually a straw, or outside time). Leelo may also hit other people to gain attention from staff and peers. He hits specific peers more often than others. These peers sometimes are screaming when he hits them (screaming can be a trigger for hitting); other times there is not clear antecedent other than the peer is present and nearby. Typically, hitting peers results in sudden and dramatic activity, as adults rush to the scene, suggesting an attention function, or perhaps that Leelo is bored and seeking change or activity.

In consultation with a developmental psychiatrist Dr. R, Leelo started on a trial of Abilify 5mg 1x daily on 11/20/08. The dose was increased to 2x daily on 12/14/08. Leelo’s school staff were not informed of the medication trial. Hitting self and others appeared to continue at similar rates as before, and with similar, if not greater intensity. For example, in December, Leelo began pushing people and furniture (room area dividers) intensely enough to knock them over. [...] Leelo appeared less focused during independent work. [...] he was more obsessed with straws, throwing them away and requesting fresh ones. Parents reported similar behavior at home with Abilify.

Staff consistently use name cards to prompt Leelo to refer to his visual schedule when he transitions between activities. Staff also use simple, clear language when giving Leelo directions. Staff are familiar with Leelo’s high risk times, including circle time, when other children are screaming, and waiting for computer. Next steps: increase use of praise and reinforcement for appropriate replacement and coping behaviors (e.g. waiting, hands down, etc); increase use of visual supports when giving routine less-preferred directions (walk together, put on shoes, wait), increase learning opportunities for practicing requesting breaks and help, waiting.

Leelo is learning more appropriate behaviors to meet his needs:

Getting attention by tapping and/or calling someone by name. Staff provide daily opportunities for Leo to tap and/or call them by name. Leo consistently uses this replacement skill throughout the day when making requests. He does not yet use this when he wants to play or interact. He does approach adults and hug them. He also approaches both adults and peers and hits or pushes them. It is unclear if this type of hitting/pushing is an attempt to interact socially, or to create excitement/change in the environment.
Next steps: Teach Leelo to invite someone to play by giving a play suggestion e.g. “Let’s play ball”, or “Let’s play swings”.

Requesting a break: Currently Leelo practices requesting a break 1-3x daily, usually in context of circle time, and/or work with teacher.
Next steps: practice more frequently, or Leelo will lose this skill; staff should consistently honor Leelo’s request for break during circle time.

These continue to wax and wane. In general, they are best treated by blocking him from completing them, if possible, and redirecting Leelo to the task at hand. Currently, Leelo is requesting [others] to repeat words or phrases before he performs a skills e.g., ... “one at a time” during snack.

During the summer, ... Leelo’s stereotypic use of straws [was identified] as a problem behavior which interfered with learning, was associated with aggression, and posed health risk (he takes used or dirty straws). Leelo hits himself and others when his request for a straw is denied, and prolonged use of straws is a risk factor for aggression. An assessment in September of straw use throughout the school day showed 3 general patterns for straw use:

  1. No straw access: Leelo does not use straws during work station, puzzles, and snack, and generally does not ask for straws during these times
  2. Straw as reinforcer: During work with teacher and OT, straws may be used briefly (up to 10 seconds at a time, for a total of less than 1 minute) as a reinforcer for completing a task; Leelo also receives a straw for a few seconds when he completes all of his independent work station tasks.
  3. Unlimited straw access: During recess, motor room, walks, and circle time, Leelo has prolonged access to straws, for more than 5 minutes at time. Often, during these activities, Leelo may hold the straw for the entire duration of the activity
... Focus on reducing straw use [during leisure/unstructured time] by implementing a visual choice board of activities from which Leelo [will] select and participate in .... Straws were used as a reinforcer following participation in the activity.

The intervention was effective immediately with straw use reduced from 100% ... to an average of 54% .... Straw use continued to be high on days when [routine was irregular], and when [demands were reduced] due to aggressive behavior. When the choice board is used, 2 positive outcomes follow: Leelo is more engaged with the activities and equipment available during [leisure/unstructured time], and straw use is reduced.

Next steps:
  • Provide more variety of materials, and choices [during unstructured/leisure time]; consider bringing large trikes out during [this] time, as well as motor time; sensory table; large playground balls and basket hoop; bean bag activities; balloons; cones for tricycle obstacle course;
  • Continue to increase Leelo’s engaged time with recess materials, and reduce straw time further.
  • Explore this and other intervention strategies (e.g. noncontingent access) for reducing straw use at home
  • Consider putting straws on Leelo’s schedule, so that he knows when he can get a new one.
Family and staff are working to increase his tolerance of new and less-preferred healthful foods. In November, Squid worked intensively and successfully with him on eating apples. Currently, Leelo can eat a large slice of apple (about 4-5 bites), before receiving a handful of preferred snack (veggie booty) [Currently Leelo will eat an entire apple's worth of slices with no reinforcer]. His family is now working with him on eating orange slices [Discontinued; he loathes oranges. Via Sage and during speech/feeding therapy, we are having some success with freeze-dried mango, soy nuts, etc.]. Next steps: continue with apples, gradually increasing the size of the slice prior to receiving the reinforcing snack; begin to introduce next target food at home, in intensive session. Select food that was previously eaten by Leelo.

In addition to being critical for learning new skills, engagement in learning and activities is related to reduced aggression for Leelo. The more engaged Leelo is in purposeful, varied, and motivating activities, the less likely he is to hit himself and others.

This quarter, Leo’s home ABA program continued to emphasize self-care and behavior, leisure, and communication skills.

This quarter, Leelo’s family worked hard to produce materials for Leelo’s home schedule.
Next Steps: begin to implement the schedule, beginning at a convenient time (e.g. one where parent can attend relatively uninterrupted to Leelo and the schedule use)

Leelo’s family now keeps four visual cues in the car, which help Leelo when given directions, including “shoes on,” “seat belt on,” and “wait.”
Next Steps: keep these and/or other visual cues on person when spending time with Leelo in any location (store, around house, etc). Options include a key chain, small book, mini velcro board, etc.

Check schedule: Continue to use visual schedule throughout ABA session
Next steps: begin using visual schedule with family during designated 1-hour periods each day (e.g. morning prep for school, evening routine, etc).

Use text and icons to support routine, less-preferred directions (e.g. wait, shoes on, stop,etc).

  • Leo has mastered working on 5 tasks independently for between 15 and 30 minutes in his room.
  • Next steps: do independent work at kitchen counter, or in living room. [implemented]
  • Community Outings: Continue working on following the directions “stop”, “walk together” using visual supports. Increase independence by using visual cues on schedule e.g. “put on shoes” to prepare for walk.
  • Setting table: Continue working on setting multiple places at the table in the kitchen or dining room.
  • Laundry: Leelo has mastered putting clothes in correct drawers. Continue working on sorting and folding clothes.
  • Make a snack: continue working with Leelo to make a simple snack, such as sandwich or apple.
  • Food Tolerance: Leelo is beginning to request apples spontaneously when he is hungry. Continue working on newly introduced food (orange).
  • Toileting: continue work to increase Leo’s independent initiations, reduce accidents.
  • Getting attention: Leelo has mastered calling people and/or tapping them to get their attention.
  • Next steps: Leelo should learn to give a play idea or direction following getting the person’s attention.
  • Help: continue work on requesting help; introduce text prompt (e.g. yellow card with word “help” on it);
  • Wait: continue work on waiting, using text prompt;
  • Taking/requesting break: continue; teach Leelo how to take a break by leaving a less-preferred activity/area, doing something relaxing, and then returning to the area/activity.
  • Computer: Continue new games; continue keyboarding
  • Reading: read stories with Leelo; do reading-related puzzle (e.g. matching word to picture, putting letters together to spell sight words);
  • Games: continue learning new table games; begin playing with sister at table;
  • Gross motor activities and exercise: swim, trampoline, walk/hike, bike, other.
  • Craft or project: Continue working with Leelo on a multiple step (e.g. cut and paste) art or science project; Use visual cues and a finished product along with verbal directions
COMMUNICATION AND ATTENTION [if you know Leelo IRL feel free to jump in and reinforce]
  • Leelo is fluent at requesting, giving directions related to tangible things he wants; he occasionally comments to others about the current activity; his articulation and eye contact are inconsistent
  • Continue to require eye contact and clear articulation, and only reinforce those communications.
  • NLP: continue 5 words; emphasize giving play ideas (see above in behavior- attention);
  • Talking in past tense about day at school: continue working with Leelo, using school day folder with photos. Increase the variety of questions Leelo is answering (e.g. what did you do, who did you play/work with, what did you eat). Begin teaching Leelo to ask a reciprocal question following his answer.
  • Asking and answering social questions: continue. Have Leelo practice with family, others.
  • Taking conversation turns: work with Leelo to increase the length of his conversations from 1 turn each to 2 turns each. Include social and reciprocal questions and comments.

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