Temple Grandin

I recently saw Temple Grandin at the CT forum, and I will be writing about the interesting topics they discussed. Overall, it was a very entertaining and enlightening discussion about the wonders of the human brain!

Be back soon...

LUCY: A behavior analyst's perspective

LUCY: A Behavior Analyst’s Perspective

I am not a theater critic by any means. I am on the other hand a behavior analyst (working with children and families affected by autism for over five years), and I wanted to discuss the roles of mother and daughter affected by autism, as well as my opinions of the theater performance of LUCY, written by Damien Atkins, that I had the good fortune of seeing at the the Delaware Theater Company last weekend.

First of all, I would like to start by saying that even though I am not a critic, I DO know when a performance is inspiring and moving, and this performance was just that. All the actors in this performance should be very proud of themselves for playing their part to make the entire show move and inspire us. It depicted honest struggles and true emotions that plague real families affected by autism. There were teary eyed, very intrigued members of the audience around me, praising the performance and all of its actors after the show was finished. A great show gets the audience talking and this show was amazing! It was truly inspiring to have a play be about something important in this culture and bring real issues to the stage.

The Mother/Daughter Characters: As they relate to behavior analysis and autism

The Mother

LUCY brought the parent struggle to the forefront. As stated in the first scene (and the theme of the show supported this), the play wasn’t really about Lucy at all. It was about her mother, Vivian, played by Kate Eastwood Norris. The performance revolved around Vivian’s transformation as a woman and a mom, and her struggle toward acceptance and self-realization. The character covered a wide range of emotions throughout the play. At first, she felt a disconnection with others and was hiding from confronting issues with her own personality. But, her relationship with her daughter made her have to face the truth about herself. She portrayed the social awkwardness and scripted repertoire of a child or parent who is uncomfortable with natural conversation. The writing focused on Vivian’s difficulty with social interaction and with literal language, which are very common areas of misunderstanding in people on the spectrum. The character demonstrated this confusion and awkwardness, insisting people be more specific when relaying information to her. It was very clear she did not know how to read into the subtle social cues people use when “beating around the bush.” It was hard for her to figure out what people meant, and she often asked for clarifications of subtle cues and even jokes. It is interesting that Vivian’s profession was science. This comes back to taking language literally. People with autism are drawn to science because unlike many things in the English language, it uses literal meaning of language—one word has one precise meaning. Emotions are also very hard for people with autism to interpret. Kate portrayed the character with little affect, stating things as a matter of fact. This was ideal for someone hypothesized to be on the spectrum. This lack of affect was probably the main reason Lucy loved her stories. Vivian did not cloud stories with emotion, but told the story directly to get the point of cross, using literal language and clear pictures so all the parts of the story fit together like a puzzle. Kate’s portrayal of the struggle of motherhood was amazing. She allowed the audience to feel awkward, uncomfortable, angry, confused and worried right along with her, as she adjusted to life as a mother and investigated the disorder of autism. It was clear she was a very gifted and expert actress. The mother’s transformation as a character from the beginning to the end of the play demonstrated that by learning more about herself, she was able to become more comfortable in what she could provide her daughter. The character went from shying away from others’ touch, and feeling disappointed in herself for not having natural maternal instincts, to the last scene where she comfortably held her daughter in her arms demonstrating true bond and love.

She searched for answers, pushed people away, and finally found it in herself to be more of the mother she wanted to be. This play was truly about the mother’s struggle and self-discovery when faced to raise her child with autism. It didn’t make sense to her and she raced to find a meaning that was significant to her own life and own experiences. She, like many parents of children on the spectrum, struggled to find a reason and an explanation to the mysteries of autism.

The Daughter, Lucy

For over five years, I have worked with children and families affected by autism. I watched this play to see the portrayal of the child with autism. Therefore, my interest lied in the content and the character of Lucy, played by Andrea Green.

Andrea Green’s portrayal of a teen with autism was both realistic and powerful. Each stereotypy, idiosynchrosy, and protest called to mind dozens of my students with autism that I could picture displaying the same behaviors in similar situations. From my experience, puberty is especially difficult for a child with autism, and menstruation can be very confusing. It was very nice to see a show go into depth during this critical stage of a young girl’s life. Many behaviors displayed by children with autism can be shocking and provocative, one of which being in the category of self-injury. Andrea kept self-injury limited, but when she hit herself, she fully committed to her role to evoke powerful emotions from the audience. Her self-injury accompanied an auditorium full gasps, and people finding the realism of autism difficult to watch. Lucy was the narrator of the story, as well, and broke the fourth wall to talk directly to the audience about what she sees, hears and feels about events in her life. The content of each monologue demonstrated that Lucy sees, hears and thinks much deeper than her character can communicate. The monologues also showed the unique way a child with autism views the world and its events. It explained why she may be doing some of her behaviors, for example discomfort, sensitivity to light, etc. The content of the monologues truly demonstrated to the audience that if we could actually hear what was happening in the mind of a child with autism, we could anticipate her otherwise unpredictable behavior in the scenes ahead. The burden of proof fell on Andrea Green, as she had to take the information verbalized in Lucy’s monologues, and find somehow to communicate those feelings like any other child with autism. She had to present her wants and needs, likes and dislikes, using non-verbal gestures, body language, moans, grimaces, aggression, self-injury, and any other means of primitive communication to allow her family and therapist into her world as she did us. Andrea successfully accomplished this challenge. She transitioned seamlessly from the skilled and self-aware narrator to the introverted and somewhat frightened affected child. She used her talents to tell just as much of her story through narration as she did through the subtle cues and body language of a child with autism.

The Writing: As it relates to autism/behavior

When sitting on the floor with Lucy and asking about her emotions, the therapist asked Lucy how she felt. When Lucy started moaning at him, he sat with Lucy until she was finished before he left her side. It is very important to follow through with a child with autism and not reinforce a maladaptive behavior by giving into it. It was obvious Lucy’s moaning was indicating not only how she felt, but her desire for him to leave her alone. He waited until she was finished yelling to leave her side. If he had left before she was finished yelling, she could learn that screaming at someone would give her what she wanted and she might be more likely to scream in the future. Letting the inappropriate behavior communicate effectively is a common mistake people make with children with autism, and it is important to not give into the behavior and reinforce it. With consistency, Lucy would learn that it is by being cooperative and calm that she gets good things and gets what she wants, not by screaming and acting out.

I liked that the therapist brought up all the recent information about thimerosol, lead poisoning, and other popular theorized contributors of autism. As part of the scientific community, it makes me nervous that the play even brought significant attention to the possibility that vaccines caused her autism when there is no research evidence supporting that. I really appreciated that the therapist demonstrated knowledge in the current research and discussed counter arguments to explain that the environmental factors of autism are still unknown.

Routine is very important for a child with autism, and I loved the organization and structure that the father brought to Lucy’s life. He had schedules upon schedules to follow to keep Lucy’s routine as steady as possible. Consistency is very important in building a predictable day for a child with autism to build trust and make lasting behavior change. It was very beneficial for the audience to see a father as the lead caregiver and expert of his daughter’s life. It defies conventional norms, as does many topics in this show.

My job as a behavior analyst is to analyze the immediate environment for cues related to the occurrence of maladaptive behaviors in children with autism. I appreciated that this play made the audience think about what events in the environment could be eliciting the maladaptive behaviors of the child. This performance called attention to autism characteristics and environmental cues for behavior, such as tactile defensiveness, over-sensitvity to touch, sound, light, smell, and the inability to read others’ emotions among others.

Suggestions from the behavior analyst:

It is important to determine the function of behavior (the reason why the child is acting out) and replace the behavior with something that serves the same function (e.g.: yelling out to get attention from teacher should be replaced by raising hand, an alternate activity that gets attention from teacher more appropriately). The therapist told Vivian, Lucy’s mom, to have Lucy stop spinning because it isolated her. He stated this quickly, without a plan for the mom to follow, as if stopping a behavior was something the mom could easily do on her own. More than that, if an inappropriate behavior is being decreased, a socially acceptable behavior needs to be increased (yelling out in class should be replaced by teaching to raise hand or else the child has no way of getting his/her needs met). If Lucy spun in circles to get the visual sensation of colors going at once, she could get a kalaidscope that gave her the same sensation more appropriately, etc. Having a child with autism stop a behavior isn’t easy first of all, but it also isn’t therapeutic without a replacement activity to fill the time they used to fill with the previous action (and to give them that stimulation or desire in an appropriate way).

It is not uncommon for children with autism to have aversions to clothing. Tags and seams that are unnoticeable to you or me could be extremely painful for a child with autism. However, it is important in behavior analysis to determine the function of behavior scientifically before putting a plan in place. (I believe she was working with a psychologist, but the show refers to him as a therpaist, so that is the term I will use). The therapist in the show determined that corduroy was aversive to Lucy because she pulled her pants down and didn’t want them back on. Aversion to corduroy could have been the reason, but he jumped to that conclusion without asking more questions. Typically, in my own experience, when children in my programs pull down their pants, the first thing we do is take them to the bathroom. In schools and homes, most children are not taught to initiate using the bathroom. Their teachers or parents tell them when it’s time to go, and take them into the bathroom. The first step that children are often required to do independently is to pull their paints down. So, when children get the urge to go to the bathroom, they often start with the first step they are familiar with. I see children pulling down their pants in inappropriate places like the hallway or the classroom because it is the first step in the sequence they have practice doing independently. What the therapist didn’t see that the audience did, was a few minutes after Lucy pulled down her pants, she smeared feces all over the bathroom wall. Knowing every aspect of the situation might have made him investigate further before writing it in her file that she doesn’t like corduroy. It is suggested by this writer to be a detective, and discover and test all possible environment factors to determine the function. I felt the therapist jumped to cordoroy aversion without weighing other valid possibilities. Assuming, rather than testing, the true function of behavior could be detrimental to successful behavior change in children with autism.

Teaching emotional self-awareness and labeling emotions is very important in empathy, communication, and behavior management. The therapist presented Lucy with a list of faces to decide how she felt. I like to use real pictures or video modeling, etc rather than the generic chart of cartoon faces to teach emotions so that children with autism can gain more self-awareness. It is hard for typical people, myself included, to view that generic chart and decipher what each face is supposed to mean. They may be appropriate for more verbal, higher functioning students, but I couldn’t imagine Lucy using it accurately. Lucy’s mother even made a comment that she could not decipher the pictures. If a mother who is much more self-aware could not discriminate between the cartoon faces and label an emotion, how could a child be expected to do so accurately. (Although, I do realize the writer was probably demonstrating by the mom’s statement that she also had difficulties deciphering emotion, that statement also solidified my disdain for those emotion charts).

Summary

Overall, I think this accurately depicts the complexity of mother-daughter relationships, autism, and parenting hardships. I could write so much more about the wonderful performance and the amazing portrayals of children and adults on the spectrum. I feel privileged to have had the opportunity to see this show at Delaware Theater Company, and it brought light to how this terrible condition and its mysteries. This show left me teary eyed and emotionally invested in the characters. The writing and the actors provided a wonderful and emotional perspective of the difficulties parents raising a child with autism. Unfortunately, this play closes this weekend, so readers of this blog will not have the fortune to see this amazing and moving performance about parenting and autism.

Colleen Williams, M.Ed

Further Resources:

Delaware theater Company: http://www.delawaretheatre.org/plays_lucy.php

Documentary Video:

If interested in other heart-wrenching parenting perspectives on raising children with autism, I suggest watching this 13 minute commentary about the difficulties of parenting (presented at Sundance Film Festival) Autism Every Day - produced by Lauren Thierry of October Group and Eric Solomon of Milestone Video.

Warning: Like the play LUCY, this documentary depicts honest and heartbreaking parenting struggles and the reality of autism, and WILL make you cry.

Autism Events

Recently, I saw the play LUCY, about a mother's struggle raising a child with autism (Delaware Theatre Company). I will be writing about this soon. I can tell you already it was amazing and very moving!

Also, Temple Grandin will be coming to Hartford CT to speak about autism and the brain. I will be in the audience and report back!

Practice of Behavior Analysis is in Jeopardy

Issues related to Professional Practice

http://www.babat.org/professionalpractice.html

The practice of behavior analysis in Massachusetts is in jeopardy. The Massachusetts Psychological Association wants to take control of the practice of behavior analysis. They have introduced a bill (to see the bill, click here) that would deny most of the 700 BCBAs the right to practice behavior analysis. Fortunately, behavior analysts have a voice in the Massachusetts legislature in Rep. John Scibak of South Hadley. Rep. Scibak has introduced a bill (to see the bill, click here) that would uphold the right to practice of persons credentialed by the Behavior Analyst Certification Board. For a better understanding of the direct situation our right to practice faces, please read the following press release by the BACB (click here).

Now is the time to call upon our own legislators to urge their support. Your voice on this important issue matters - please contact your legislator to let him or her know how important this issue is to you!

Taken from: http://www.babat.org/professionalpractice.html

This is scary, people. Only behavior analysts are trained, educated, and have experience working in the scientific field of behavior analysis. Psychologists are not necessarily trained in the implementation of behavior analysis. This could be devastating to families affected by autism, who will not get the same help and support they need if this bill is passed. Licensure is not itself a bad idea to tighten which behavior analysts practice. I am behind the idea of licensure because the tighter the requirements, the more professional our field will become. There are people who go to school, train, and gain supervised work experience to work solely with families affected by autism. What will happen to these people, like me, who will no longer be legally allowed to do that, despite their extensive background and education? Licensure should be based on behavior analysis and not psychology. These are two schools of thought, although many think they are similar. I am currently obtaining a PhD in clinical psychology, but I am not learning about autism or behavior analysis in these courses. My affiliation as a someday psychologist does not change my belief that people helping families should be trained in the behavior analysis standards of the BACB (BACB.COM) not psychological associations. I personally know many psychologists who exceed psychological association standards and who are great psychologists, but do not know the first thing about behavior analysis. This scares me that I could be limited from helping families who really could use my help. I am also fearful if this is passed that it will set a precedent for states to follow. We do NOT want people outside of the field, who are not trained in autism or applied behavior analysis, to be working with families as behavior analysts. Children with autism need the scientific and systematic approaches proven through years of applied behavior analysis research.

Function of Behavior

I typically begin my applied behavior analysis and autism trainings with an overview of basic behavior terminology, so that is where I will start today.

Function

Determining the function of behavior is the MOST essential part of my job. The function of the behavior is the reason why the child is engaging in that particular behavior. This information is the basis of behavior plans and lasting behavior change. Knowing the function of the behavior can help create a behavior plan that allows the child to appropriately obtain the function in other ways, and eliminate the need for the maladaptive behavior. The function could be to gain attention, to get a tangible object, to escape or avoid something aversive to them, or it could be due to an internal sensory sensation that the child gets from the behavior.

The function can be determined in a variety of ways. Interviews with parents and staff can give helpful information about when the behavior is most likely and least likely to occur. If a behavior is most likely to occur when the student is ignored by the teacher, then this behavior may function as a means for the student to gain attention. If a behavior occurs when the environment is loud, then this may serve as a means to escape the aversive environment. Sometimes, if a behavior is reported to occur consistently at 11:30am, this may point to a tangible function to express a desire to get lunch. ABC charts determine what the behavior looks like, what happens right before the behavior and what happens directly after a behavior, in order to get a better understanding of when the behavior occurs. Functional assessments like The Motivation Assessment Scale (MAS) or the Functional Analysis Screening Tools (FAST) are other beneficial ways of trying to determine the possible function of the behavior. They include Likert scale of the circumstances in which the behaviors occur so we can get a better understanding of the function.

The most accurate way to determine the function of the behavior is to run controlled experimental conditions called an analog functional analysis. In a functional analysis, conditions are set up in a controlled environment, where each function is tested in isolation to attempt to elicit the behavior. If the behavior occurs most often in one setting, it is likely that the function of the behavior lies in that category. For example, if I was testing an attention condition for screaming, I would stay in the room with the child with my back to them and record each time they screamed. After each scream, I would give them attention. Then, I would repeat the process of ignoring them and provide attention each time they screamed. If they screamed most often in this condition, it would be clear that the function was attention seeking. In a functional analysis, we want to see what makes the behavior occur by withholding what they might want in each condition, and then giving in after the behavior occurs. Screaming served as communication that he needed attention, and we gave it to him right after he screamed, so he learned that screaming was successful in relaying his message to us. Screaming served its function.

Once the function of the behavior is determined, behavior plans are created to decrease the inappropriate behavior and increase appropriate ways of obtaining that function. If screaming is done for attention, we would follow several strategies to decrease or eliminate the maladaptive behavior. We would teach the child appropriate ways to gain attention such as to raise his hand or ask for help. When we teach him the new skill, we would give ample attention when he asks appropriately so he learns that it works in gaining attention. We would provide ample attention when the behavior wasn't occurring,such as providing him extra staff time each hour or enroll him in a big brother program where he can get attention more frequently. We also would change how we react to the behavior. We would no longer give him attention for screaming because we do not want him to learn that screaming serves a function. We would provide attention for appropriate asking and give lots of attention when he’s quiet, so he learns that not exhibiting the behavior, and asking appropriately give him all the attention he could ever need.

4 simple steps to behavior change:

In a nutshell:

• Determine Function of behavior
• Find ways of meeting their needs before the behavior occurs
• Teach ways to gain the function appropriately
• Never let their inappropriate behavior serve the intended function

Cooper, Heron, Heward. (2007). Applied Behavior Analysis.

Virtual Reality Teaching Technology

This is my first entry on my autismtalk blog! I thought this would be a good outlet to get the word out about autism, to talk about what I know and what I see on a daily basis. I work with children on the spectrum and it is a joy and a blessing in my life. I read this article about technology and autism. It is unbelievable to think that technology has gotten so advanced that virtual reality can be considered a feasible option for aiding autism teaching. Children with autism are so sensitive to environmental cues that now experts say computers give an even and consistent teaching opportunity for children with autism to learn without being upset by the external subtle cues of human instruction.

“particularly in a virtual world that’s not moving as quickly and doesn’t have as many cues that might distract you,” - Gary Mesibov, director of the University of North Carolina’s Division TEACCH.

This finding is a stepping stone to getting the best education for these kids. Technology is a wonderful supplement to effective teaching and can obviously aid in the success of children with developmental disabilities.

One wonders, however, when they go back to a regular setting, would children with autism who learned via virtual reality be back where they started, or will they be able to generalize their new skills?

http://www.msnbc.msn.com/id/24100671/