The Northeast Pennsylvania Regional Autism Acceptance Project was established by Dr. Dan L. Edmunds, Ed.D. in the Scranton and Wilkes-Barre, Pennsylvania area to help autistic, Asperger's and other developmentally different persons based on autonomy, understanding, tolerance, inclusion, self-determination, and meaning as well as providing educational and other advocacy for persons with special needs. Please contact us at DoctorEdmunds@DrDanEdmunds.com or visit www.DrDanEdmunds.com
Tuesday, July 21, 2009
DAN L. EDMUNDS, ED.D.
NORTHEAST PENNSYLVANIA REGIONAL AUTISM ACCEPTANCE PROJECT
Saturday, July 18, 2009
For more information, please see http://geocities.com/voice4autism
Tuesday, July 14, 2009
In dealing with children with autism spectrum disorders, its all about relationship. These children are within a realm where they feel and respond much differently than others. There has been much focus on trying to eliminate certain behaviors or to evoke particular responses in children which actually become rote and repetitive for them without context. One of the goals in aiding these children should be in helping them find meaning. In order to do this we must be willing to not look at the child as broken, unable to respond, or even unable to communicate. These children DO communicate, however they are not always able to manipulate their senses to communicate in the typical ways of other children. As a result, they can become easily frustrated and trapped. The therapist must enter their imaginative world and learn to communicate in their language.
Dr. Stanley Greenspan gives an example of a child who initially went to a psychologist who engaged the child in repetitively placing pegs in a board or trying to find beads hidden under various cups. This was supposed to be a measure of the child’s intelligence and abilities but it proved ineffective. The child constantly hurled the pegs to the floor. A different psychologist took a unique approach in having the mother participate with the child in a series of interactions. First, the child began grabbing the nose of the mother. Rather than redirecting the child and seeking to have her refrain from the grabbing, the mother responded with a ‘toot toot’ noise and then allowed her to do it again responding with a new noise. The mother then gently touched the nose of the child and the child to the amazement of the mother smiled and let out a noise, “mo mo”. The child had indeed communicated but in her own language. The mother and child had made a real connection. This showed to the psychologist that this child’s cognitive development was within a normal range and here was a child who wanted to exert some control over her surroundings. Over time, the communication increased, and the mother was able to have ‘pleasurable’ discussions with her child that prior had never existed (Greenspan, The Growth of the Mind, 1997, pg. 8-9)
Children with language difficulties need to have emotional and social supports. Unless these are more fully developed, the language will be fragmented and lack meaning (Greenspan, pg. 32). Before language development can come, improving the understanding of non-literal and non-verbal communications need to be worked upon. There are 6 main milestones for children: self regulation and interest in their surrounding world; intimacy; two way communication; complex communication; emotional ideas; and emotional thinking. In Greenspan’s floor time model the first goal is to encourage attention and intimacy which helps in the further development of the first two milestones. The parent will actively participate in a period of play therapy engaging their child in creative play allowing the child some direction over the course of the session and taking interest in their activities as well as providing encouraging feedback. Self-regulation becomes difficult for some children because sensory stimulation can be so overwhelming or their attention may wander (Greenspan, Essential Partnership, pg. 8). Difficulties in intimacy occur because the child is not able to effectively read the cues being given. Often times the children will have an easier time with adult relationships because adults are more able to adjust their cues to the level of understanding of the child whereas this does not always occur with peers. A part of reaching out to these children and guiding them in the intimacy milestone is to provide them opportunities to interact with peers and to have them be able to relate back what the other person is stating and feeling. Making use of social stories and role plays can be helpful in aiding the child in understanding the feelings of others as well as their own feelings. A social story is a device used where a make believe dialogue is constructed and the child is asked to fill in the gaps. “A social story is a story written to specific guidelines to describe a situation in terms of relevant cues and common responses (Gray & Granard, 1993). The use of comic strip conversations can also be employed. “A comic strip conversation is the genuine ‘art of conversation’. This approach incorporates the use of simple drawings and color to illustrate an ongoing communication. This provides additional support to (children) who struggle to understand the quick exchange of information in a conversation (Gray, 1994). An advanced form of the social story is what is termed the ‘thinking story’. “Thinking stories demonstrate the variety of possibilities as to what people may be thinking when they make certain statements, or when they display certain behaviors…Thinking stories follow a specific, structured format, using picture symbols from Comic Strip Conversations to define and illustrate the abstract concepts covered in the story (Baron-Cohen, 1990, Dawson &Fernald, 1987). The person or therapist using the social story can help guide the child through and the use of feelings charts can also be a beneficial aid. To reach the milestones of two way communication and complex communication, it is important within the sessions that the parents have that they utilize a dialogue with the child, help guide them to use their face, emotions, hands, to convey their needs and desires. Encouraging the child’s imagination and creativity will help in the development of the complex communication as they begin to move towards problem solving. Lastly, it is important to work on logical thought, being able to take the things they have learned from the parent’s coaching and to actually be able to convey some insight and understanding of the world.
In the play therapy sessions, it is important for the parent and/or therapist to actively participate. The purpose should not be to entertain the child, but to interact with the child. Seek to draw near to the child, but this should not be forced, allow the child to express themselves at their particular pace. Use lots of gesturing and cueing and become a part of their imaginative play, allow them to show and teach you something about their world. It is important to not just tolerate their feelings and certainly not be dismissive of them, but allow the child to express their feelings openly being able to distinguish feelings from behavior. Don’t be afraid to challenge the child in new skills, they will be eager to learn as long as the challenge is not forced. From time to time, you will notice that these children will become obsessed with routines or repetition, so in the play do something to break the routine or repetition. If a child is repeating a certain topic or action, do something entirely different that will focus their attention elsewhere. Do not be repetitive in your directives and follow a plan of rote learning, allow the child to explore and display what they do know. It is important to ask open ended questions, let the children explain to you. Find out what these children find meaning in, and seek to have them tell you why. Don’t judge or evaluate their answers, but be a listener. Help the child to brainstorm new ideas, and particularly when conflict arises, let them be able to perform some self assessment, sit as a partner as they develop adaptive responses and utilize them. Don’t be afraid to allow the child to fail from time to time, they will learn and gain insight from their trial and error. When the child is expressing certain thoughts and feelings, help them to be able to label what it is they are expressing (Greenspan, Essential Partnership, pg. 20)
There are key social behaviors as they relate to relationship building that should be addressed with the child who has been diagnosed with Asperger’s syndrome. The first is entry skills. This refers to how the child joins a group of children and whether or not they seek to include other children into their play. The therapist can help serve as a coach for entry skills and encourage scenarios where the child will have opportunities to exercise the skill (Atwood, 1999) Next is assistance, whether the child recognizes when to seek help from others or to provide help to others. Social stories can certainly be utilized in this situation. An example of a social story as given by Dr. Tony Attwood (1999) that applies to this skill is as follows: Sometimes children help me. They do this to be friendly. Yesterday, I missed three math problems. Amy put her arm around me and said, “Okay, Juanita” She was trying to help me feel better. On my first day of school, Billy showed me my desk. That was helpful. Children have helped me in other ways. Here is my list: I will try to say, Thank you! when children help me. Another example of a social story is: My name is Juanita. Sometimes, children help me. Being helpful is a friendly thing to do. Many children like to be helped. I can learn to help other children. Sometimes, children will ask for help. Someone may ask, ‘Do you what day it is today?’ or ‘Which page are we on?’ or maybe something else. Answering that question is helpful. If I know the answer, I can answer their question. If I do not know the answer, I may try to help that child find the answer. Sometimes, a child will move and look all around, either under their desk, in their desk, around their desk. They may be looking for something. I may help. I may say, “Can I help you find something?” There are other ways I can help. This is my list of ways I can help other children: Children like to be helpful (Atwood, 1999). For younger children the use of the Mr. Men stories (such as Mr. Nosy, Mr. Grumpy) by Roger Hargreaves can prove useful.
The other skills which need development include receiving and accepting compliments, accepting and receiving criticism, accepting suggestions, reciprocity and sharing, conflict resolution, monitoring and listening, empathy, and learning to ending meaning how to provide closure to an interaction. For conflict resolution skills I recommend the use of Weeks’s 8 fold model. In this model one first provides and effective atmosphere for the discussion and resolution of the conflict, clarify perceptions, focus on needs, build shared positive power, look to the future and learn from the past, generate options, develop doables, and make mutual benefit agreements (Weeks, 1992). The child diagnosed with Asperger’s Syndrome will need particular coaching and support in going through these steps.
Within the education system is a great misunderstanding of Asperger’s Syndrome. These children cannot be placed in an autism classroom as they are too high functioning. These children can be challenging and some teachers and school administrators are afraid of taking the necessary steps to insure these children’s success. Partial hospitalization becomes an easy out for the school districts. Teachers need to be able to build a relationship with the child and recognize their strengths, being respectful of the child’s personal space and boundaries and always speaking to the child in a calm and collected manner. “Teachers need to have a calm disposition, be predictable in their emotional reactions, flexible with their curriculum, and see the positive side of the child (Atwood, pg. 173) Some teachers see that these children will rock in their seats or move their hands or feet and look at these children as being disruptive in the class. The rocking behavior is a way that the child ‘grounds’ themselves, it is comforting for them, and is not a behavior to condemn the child for nor one that can or should be eradicated. If it appears to be a disruption, the teacher can provide a place for the child to be able to have a break until they feel they are more calm. School administration must understand that for the Asperger’s child that sensory stimuli can be very frustrating, and sometimes these children may need brief periods away from school that allow them to regain some emotional stability. Such absences should be written as allowable in the IEP and should not be treated as truancy situations. The size of the classroom is paramount for these children. “Open plan and noisy classrooms are best avoided. The children respond well to a quiet, well-ordered class with an atmosphere of encouragement rather than criticism. Parents find that with some teachers the child thrives, while with others the year was a disaster for both parties. If the teacher and child are compatible, then this will be reflected in the attitude of other children in the class. If the teacher is supportive then the other children will amplify this approach. If they are critical and would prefer the child were excluded, other children will adopt and express this attitude (Atwood, pg. 174). Once a child is in an appropriate environment with the necessary resources, this environment should be maintained. “Once parents have located a school that provides the necessary resources, then it is important to maintain consistency. Going to a new school means changing friends and the school not being aware of the child’s abilities and history of successful and unsuccessful strategies.” Children with Asperger’s syndrome may display an unsual gait and difficulties with motor skills and coordination. They may also have difficulty with sensory stimuli so it is important for the therapist to take note of distressing stimuli and help to limit these things within their environment as much as possible. Activities designed to work on motor skills and coordination can prove beneficial but consideration should be taken as to not force a child or cause undue frustration if the child’s abilities are impaired. Emotional coaching can prove effective for parents of the child with Asperger’s syndrome. Emotional coaching involves seeking to see the expression of emotions as a time for intimacy and teaching, providing validation to the child’s emotions, and helping the child to be able to label their emotions. The parent who is an emotion coach values the child’s negative emotions as opportunities for intimacy; can be patient with the child when they are sad, angry or fearful; can identify triggers; does not tell the child how to feel; does not expect to have all the answers (Gottman, 1999). There has been some discussion of a link between gastrointestinal disorders and children with autism spectrum disorders (Wakefield, 1997) Some children with autism spectrum disorders may exhibit encopresis. The child should be regularly seen by a physician if any problem arises. The child should not be punished for occasions of encopresis or be made to feel embarrassed. As pediatric neurologist Fred A. Baughman has stated, autism is a blanket term as is cerebral palsy identifying a developmental condition rather than a psychiatric issue. While those considered within the autism spectrum may display similar traits, there are diverse etiologies (Baughman, 2001). Some children with traumatic brain injury or epilepsy may display autistic traits. However, there can also be psychosocial reasons for the development of autistic traits. The term itself is very loosely used and at present the exact etiology is not fully known. I tend to look at autism as a variation in perception, yet a normal variation. These children are not defective. As individuals may be left handed or right handed, this is a variation, but does not state that a left handed individual who is in the minority is somehow defective or 'abnormal'. Rather, because children with autism have a variance in their perception, this causes them to come into conflict with the general functoning and perceptions of society as a whole. They have unique strengths but may need dome extra assistance in being able to navigate through what the rest of society typically perceives and how it interacts.
There are no medications that will cure autism and Asperger’s syndrome. Some individuals have used various medications in an attempt to control behaviors, however it must be realized that this is all that the medications are capable of doing is controlling a certain aspect of behavior by blunting certain brain functions. These medications all have serious risks. “Neuroleptics have their main impact by blunting the highest functions of the brain in the frontal lobes and the closely connected basal ganglia. They can also impair the reticular activating or energizing system of the brain. These impairments result in relative degrees of apathy, indifference, emotional blandness, conformity, and submissiveness, as well as a reduction in all verbalizations, including complaints or protests. It is no exaggeration to call this effect a chemical lobotomy…contrary to claims, neuroleptics have no specific effects on irrational ideas (delusions) or perceptions (hallucinations)." (Breggin, 1999) These medications also carry the risk of causing tardive dyskinesia or neuroleptic malignant syndrome. Tardive dyskinesia is permanent abnormal movements of the voluntary muscles. “NMS is characterized by severe abnormal movements, fever, sweating, unstable blood pressure and pulse, and impaired mental functioning. Delirium and coma can develop. NMS can be fatal…(Breggin, 1999) Common side effects of neuroleptic medications as reported by the Physicians Desk Reference are abdominal pain, abnormal walk, agitation, aggression, anxiety, chest pain, constipation, coughing, decreased activity, diarrhea, dizziness, fever, headache, inability to sleep, increased dreaming, indigestion, involuntary movements, joint pain, lack of coordination, nasal inflammation, nausea, overactivity, rapid heartbeat, rash, reduced salivation, respiratory infection, sore throat, tremor, vomiting. The SSRI antidepressants’ are also a common prescribed medication. These drugs can produce akathisia, mania, worsening of depression, obsessive compulsive like behaviors, and severe anxiety and agitation (International Center for the Study of Psychiatry and Psychology Newsletter, Summer 2002, pg. 15) The use of responsible psychosocial and relationship based approaches are far better than any short term benefit that neuroleptics may provide.
Scenarios to reflect upon- Evaluate each choice, what seems most appropriate? Joe is in class and his teacher is explaining a math assignment, Joe sits in his chair rocking back and forth incessantly. The teacher finds this disruptive.
The TSS intervenes by: A.verbally redirecting Joe to sit still and pay attention to what the teacher is saying
B.find a place within the room where Joe will not be a distraction to the teacher, allow him to rock if necessary, ask Joe to explain to you what instructions the teacher gave and insure his comprehension.
C.Place Joe in a time out until he agrees to stop rocking
Margaret has a particular interest in rock music and can give detailed descriptions of bands, songs, etc. Margaret is having an important conversation with her mother, but Margaret keeps getting side tracked wanting to talk about rock music. The TSS intervenes by: A. telling Margaret that later in the day they can listen to rock music together and discuss but presently she needs to listen to what her mother is stating
B.give Margaret a time out for not listening to her mother
C. allow Margaret to continue discussing rock music and have her mother continue the conversation later
John is changing classrooms which often can be frustrating for him. There is a lot of noise and distraction in the hall and someone accidentally bumps John in the hall. John becomes aggressive and begins pounding the lockers and cursing. He lunges at a boy who comes near him. The TSS intervenes by:
A.grabbing John’s arms and instructing him verbally that he needs to stop
B. retaining some distance from John, dialogue with him about what is frustrating him, ask him if you can accompany him to a quiet place to sit, offer him a drink, proceed to the classroom once hall is clear and John is more calm.
C. Tell John he will be sent to principal’s office if he continues to be disruptive. Lead him to classroom
D. Allow John to continue to pound on lockers until he de-escalates himself
Eric goes to a store and sees a man buying a toy. Eric gets very close to the man and loudly exclaims, “What are you doing? Who are you buying that for?” The man appears startled and walks away. Eric appears hurt that the man would not respond to him. The TSS intervenes by:
A. explaining to Eric that his interaction was inappropriate and he needs to have proper boundaries.
B. Explaining that the man probably misunderstood Eric and not to feel bad, and coach Eric on how he could interact better in social situations Tell the man that Eric has Asperger’s syndrome and that he hurt Eric’s feelings.
Valanti is frustrated and rather than speaking he clinches his fists, turns red, and begins stomping his feet. The TSS intervenes by:
A. giving Valanti a time out
B. take Valanti aside, allow him to vent, and discuss the feelings and why they were there, using a feelings chart if necessary.
C.Explain to Valanti that his outburst is inappropriate and he will receive a consequence.
SAMPLE FLOOR TIME SESSION (adapted from information provided by Dr. Stanley Greenspan, MD and Dr. Serena Wieder PhD
Preparation: 1 to 5 minutes
*What is your child’s mood and energy level? *What is your mood and energy level? *Remind yourself of your child’s sensory preferences to help him find his sensory “comfort zone” during your floor time session. *Is she more attentive to high or low pitched noises? *What kinds of textures does he like to touch and be touched by? *What kind of visual experiences attract her? *What kind of movement is stimulating, soothing? *What kinds of oral-motor activity organize his behavior? *What is the child doing? * How can I join in?
Interaction: 20 to 25 minutes
*Position yourself in front of your child.
*Use gestures, tone of voice, and body language to accentuate the emotion in what you say and do. Be animated.
*Talk less. Find ways to play that don't require words.
*When you do talk during play sessions, use language that is at your child's developmental level. If your child speaks in 2-3 word utterances, limit your own speech to 3-4 word utterances.
* Do less. To avoid overwhelming the child or dominating the activity, do only as much as the child is doing.
* Imitate the child’s actions.
* Follow the child’s lead regarding the “topic” for play. You can choose the topic at other times, but during floor time, let the child choose.
Fostering attention, engagement, intimacy
Follow the child’s lead and join him. It does not matter what you do together as long as he initiates the move.
Treat everything your child does as intentional and purposeful. Attach meaning to (seemingly) meaningless behavior.
Join in perseverative play.
Do not interrupt or change the subject as long as child is interacting
Pursue pleasure over other behaviors; do not interrupt any pleasurable experience.
Creating and sustaining interaction in the face of avoidance Do not treat avoidance or “no” as rejection; persist in your pursuit. Insist on a response—ANY response (not just the one you are hoping for). Play dumb or make the wrong move to provoke or sustain an interaction. Playfully interfere with what the child is doing. Block escape routes, and turn the child’s escape efforts into an interaction.
In aiding children with developmental challenges, we must first realize that this requires a team effort and a strengths based approach. It is necessary to not focus on what the child cannot do but look at what the child can accomplish and build upon this. Parents can enlist the support of professionals but must realize that it is they who are the most important persons in the child's life and that furthering the development of their child is not just the work of professionals but is a collaborative effort from everyone involved with the child. It is necessary that for any interventions to truly be effective and helpful, that they must be consistent and constant. The interventions must be the same throughout all domains that the child is present in.
It is crucial for us to understand the environmental responses that children have, whether they have developmental concerns or even if they do not. If a teacher, parent, or other person has a hostile tone, a poor demeanor, a loud voice, etc. All of these things can be overwhelming to the child and can provoke a behavioral response. All behavior is purposeful and should be looked upon as so, even negative behaviors. Behaviors are a way of the child speaking to us about a distressing situation or an apparent need or desire when they may not be able to convey this to us verbally. Light, sound, and other sensory stimuli can also produce distress for a child. We need to create awareness of what in the environment may serve as triggers to distress and seek to modify the environment to make it a more comfortable and safe place for the child. We must also be cautious in how we view children. If we look at a child displaying negative behavior as a 'monster' or feel that because a child may be rambunctious at times that we must automatically resort to medicating them, then we have taken a negativistic attitude that will surely be passed on to the child. Children are keenly aware, even those with communication struggles, of adult's perceptions of them. We should look at our children through the eyes of delight and address behavioral difficulties not in terms of how we can subdue, but rather how we can meet needs and resolve conflict and remove distress.
The floor time model is of particular usefulness in working with children with communication and social struggles. For those children who are non-verbal, we can begin to introduce hand signals, moving to use of pictures, and then gradually encouraging the child to make use of words or phrases to indicate desires. It is not important initially whether the verbalizations are correct but rather that a verbal attempt was made. When a child displays such a behavior as spinning objects, in the floor time model, we would not be aversive, but rather gently introduce a new toy or object and seek to divert the child to a more productive activity. In situations of echolalia, we can say such things as 'that's TV talk', and provide means to divert this to a different means of conversing. It is important to provide the child with understandable signals and meaningful statements and phrases when we are desiring them to behave in a different way.
In order for children with developmental concerns to be able to integrate more into the social sphere, it is necessary that they not be isolated into situations where they are labeled and shuffled away from typical peers. Rather, they should be included as much as possible with typical peers. They may need additional support and accommodations, but how will they begin to learn important skills unless they have frequent and continuous exposure to the world around them. I have developed the use of what I term 'real life rehearsals', where we may set up a particular social scenario for a child. It may be such a thing as being able to make a purchase at the grocery store. The therapist and parents guide and coach the child ahead of time in how to go about such an activity and then have them actually demonstrate it. Social stories and comic strip conversations are very useful in conveying information as these children tend to be visual learners. Social stories can be simply made booklets that the child helps to create where a particular task or scenario is outlined with what behaviors are expected. The comic strip conversation is helpful in building empathic skills as well as reflective thinking as we ask the child to develop captions for what different individuals may state and think in various situations.
Lastly, I think it is crucial, though it may appear controversial to some, to state that children with developmental concerns can and will be benefited from a psycho-social and relationship based approach alone. Some have decided to resort to medications, and I am placing no blame or condemnation on those who have made this decision, however making a suggestion that there are alternatives and informing of these alternatives as well as the hazards of psychotropic medication usage. First, I will not argue that medications can 'work' in the sense of subduing behavior. However, strapping a child to a chair would also work in regards to subduing behavior. This would be aversive and quite possible illegal. I see little difference between such an approach and that of using psychiatric medication. The difference is that one is a physical restraint, the other a chemical restraint. When we say that something 'works', often we are not looking at the mechanism by which it works. Dr. Peter R. Breggin, MD compared the use of anti psychotic medications in children to 'chemical lobotomy' as it blunts the functions of the frontal lobes. The risk of tardive dyskinesia, a permanent disfiguring neurological impairment exists with these drugs. In addition, such drugs as Risperdal are prescribed off label and are not indicated for anyone below the age of 18 but continue to be prescribed.
It may require more diligence, effort, and patience, but I remain convinced after working with over 40 children with developmental challenges, that relationship based approaches, rather than chemical restraint, prove to be a true means to teach our children skills, to focus on their strengths, to build on their development, and to help address challenging behaviors and to address the real source of conflict and distress rather than just blunting it.
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- Northeast Pennsylvania Regional Autism Acceptance Project- Scranton/Wilkes-Barre, PA
- Dr. Dan L. Edmunds is a noted psychotherapist and child/adolescent developmental specialist in private practice in Northeastern Pennsylvania. His background and experience can be obtained at http://www.DrDanEdmunds.com To arrange a consult, please contact DoctorEdmunds@DrDanEdmunds.com