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Personal Style and Interaction Tips for Working With Individuals Affected by Autism Spectrum Disorders

The following is to be used for informational purposes only

by Barbara T. Doyle

Here are some ideas that staff and family can implement that can have a positive effect on personal interaction style and interpersonal communication.

1. BE SENSITIVE. Try to be sensitive in your use of language to describe individuals (children, young adults, adults and older adults) with autism spectrum disorders (ASD) and related disorders such as Hyperlexia or non-verbal language disorders. Avoid saying things like, "Jamie is a hyperlexic." or "Julia is an autistic." (Do you notice we never say, "Bob is a cerebral palsy" or "Susan is a blind".) People with ASD autism are people, not "autistics". Autism or Asperger Syndrome, for example, is the special learning difference that they have, not who they are. Every person with ASD is unique and is much more than a label could ever describe. It may be both more accurate and more sensitive to say, "Jamie is a boy with Hyperlexia." or "Susan has autism." Parents really appreciate sensitive language use. So may the individual who has the special learning need!

2. AVOID PSYCHIATRIC TERMINOLOGY. Avoid psychiatric terminology such as obsessive, compulsive or ritualistic, or delusional unless you are a physician or diagnostician and you are describing behavior for the purpose of psychiatric or medical analysis. Instead of obsessions and compulsions, describe behavior in terms related to ASD such as restricted, repetitive interests, highly liked activity or intensely focused interests. When possible, use language to describe what you observe rather than terms that could be misunderstood. For example, instead of saying that Paul "perseverates" you could say, "We have observed Paul tearing paper for more than three minutes without stopping." or "Paul will ask the same question up to six times."

Avoid words that overstate what you mean like aggression. Aggression implies the intent to do harm to another person. Some individuals with ASD have dangerous or unsafe behavior. Sometimes they hurt themselves or others. It may be difficult to prove that an individual intended to hurt someone and is therefore aggressive.

If the individual is more than two years old, avoid describing the person as having a tantrum. Tantrum implies a spoiled child just trying to get her/his own way. A more accurate label might be an emotional outburst, an expression of extreme emotion or a time of communicating intense emotion. (In our family, we call it a melt down which describes the event without judging the person to be intentionally manipulating the situation.)

Avoiding psychiatric labels for behavior and describing behavior with rational, accurate labels increases good communication among all team members and prevents individuals from appearing worse "on paper" and in discussion than they are in real life. Be cautious about what is written and said about every individual and be sure it is accurate, non-judgmental and defensible.

3. DISCUSS THEM WHEN THEY ARE NOT PRESENT. Individuals with ASD may not respond visibly to the conversations of people around them. We do not always know how much they understand about what is said or how they feel when other people discuss them. The least dangerous assumption is that individuals may be uncomfortable when others talk about them in front of them.

ASD are disabilities that cause the individual to be "separate". If we talk about people in front of them as if they are not there, are we not separating them more? You will notice that we do NOT talk about children and adults without disabilities in front of them as if they were not there. (Imagine the reactions of your colleagues or family members if you did!)

When people have information to share about an individual with an Autism Spectrum Disorder (ASD), they should share this information when the individual is not present or when s/he is unable to hear. If this is not possible, then be sure to INCLUDE the person in the conversation, even if s/he does not appear to understand. You can say things like, "Ahmed, let's tell Mrs. Smith how math went this morning".

Positive and complementary statements should be made TO the individual, not to someone else in her/his presence. For example, instead of talking to someone else and saying that Dustin handled a situation well and you are proud of him, say it TO Dustin when the other person is listening too.

4. DON'T ASK, TELL. When an individual with ASD is having difficulty understanding, working or complying, resist the temptation to ask a series of questions about what he should be doing, what the other people are doing, where he is supposed to be, etc. Instead, TELL him directly using concise, concrete language what to do.

Instead of saying, "Joshua where are you supposed to be right now? What do you see the other people doing? What is it time to do?" you could say, "Joshua, it is time for music. Come to the table." If Joshua seems to be bothered by someone making a loud noise, resist the urge to say, "Joshua, what is the matter? What should you tell Mike to do? What is bothering you?" Instead, you could TELL Joshua what he can do. You could say, "Joshua, tell Mike, 'Please be quiet.' " TELLING is more likely to result in an individual knowing what to do than ASKING.

5. WAIT. Individuals with ASD often demonstrate a delay in processing. Individuals often need an additional few seconds after being spoken to before they can respond. This means that we need to learn to quietly wait a few seconds after speaking or showing something so that the individual can think, react, recall and respond. Be careful not to add quick additional verbal information while the individual is processing what you have already said.

If the person has difficulty in processing what is said, non-verbal additional cues may delay understanding and responding as well. Gestures, facial expression, eye contact or moving towards the individual may "distract" and slow down processing. Additional information delivered without giving the individual some processing time can result in confusion/frustration for the individual, and the loss of the information the individual was trying to process.

6. DON'T ADD MORE INFORMATION: WAIT FOR A RESPONSE. When working with individuals with ASD, resist the urge to ask multiple questions or add more information until the individual has responded to you in some way. If you make a statement to them or ask a question, wait quietly without adding additional information for at least 10-15 seconds to give the individual an opportunity to think, process, retrieve information and respond. Over time you may be able to determine how much time each individual needs to formulate and communicate a response.

Any time you speak, try to wait for some response (not necessarily verbal) before repeating yourself. We want to teach individuals to be alert to our speech whenever it is directed at them. We want to give them plenty of time to think, process and respond without feeling rushed or stressed-out (as described above). AND we want to teach them that when someone talks to them, they need to give some outward response to let us know that they heard us.

7. FOLLOW UP. Do not make verbal requests of an individual unless you are in a position to follow up and help her/him respond, comply, refuse or negotiate. If you want Christopher to come to you, and you say, "Christopher, come here please" and he does not come, you need to be in a position to get up, go to him and find out what is needed.

The idea is to teach him that when we make a verbal request, we expect him to respond to us in some way and that if he needs help, we will provide it. When you repeat what you say and he gives no response, it teaches him to ignore others when they speak. The individual with ASD may learn to "tune us out". The responses to commonly used instructional cues can and should be taught systematically in therapies such as speech/language, social skills training and occupational therapy.

8. MAKE QUESTIONS AND STATEMENTS SOUND DIFFERENT. Be sure to use a different tone of voice and communication affect when asking a question vs. giving an instruction. Avoid statements that go "up" in tone like a question at the end. If you ask a question, stand quietly and wait for an answer with a look of anticipation on your face.

9. IF YOU ASK AN OPEN ENDED QUESTION, THEN ACCEPT ANY ANSWER. Do not ask a question unless you are willing to accept any answer. If it is time to do something, don't ask if the child or adult is ready to do it or wants to do it. Instead, say, "Time to....." Or "Next we will...." or "Check your schedule". You may be trying to be polite and not too pushy, but individuals can be confused about when a choice is offered and when it is not being offered unless we use clear language. Make times when you are offering options sound and look very different from times when you are informing individuals about what needs to happen next.

10. ONLY ONE VOICE AT A TIME. Do not create situations in which individuals with ASD have to try to divide attention between two speakers. For example, if a child is supposed to be attending to what the classroom teacher is saying, other staff (including individual assistants) should resist the urge to repeat what the teacher said or rephrase it until the teacher is no longer talking.

It is probably very difficult for individuals with ASD to pay attention to two people who are speaking at the same time, one closer and one farther away. Instead of talking at the same time or repeating or rephrasing, support staff/family can use physical prompts, within-stimulus prompts, visual cues, written cues or gestures to help individuals understand and respond appropriately.

11. STAY OUT OF COMMUNICATION DIRECTED AT THE INDIVIDUAL. When a child or adult speaks to the individual with ASD, resist the urge to get into the "middle" of the interaction by talking, too. Support the individual with ASD to learn to respond to whoever spoke.

Here is a sample scenario to illustrate this point: Joey has ASD. Steve (Joey's classmate) asks Joey what Joey has in his lunch today. When Joey does not answer, Mary (Joey's aide) says to Joey, "Joey, Steve is talking to you. Why don't you tell him what you have for lunch today?" Joey does not respond. Steve begins talking to Mary.

What has happened is that Joey has learned that when someone speaks to him, Mary will speak or respond for him. In this way, Joey does not get the idea that when someone speaks to him, Joey needs to give some response himself. At the same time, Steve may have learned not to expect a response from Joey. In the future, Steve may talk only to Mary.

Instead of using a verbal prompt (as above) Mary could encourage Joey to respond, use a physical prompt, such as turning his shoulders towards the speaker, help him point to something, shape him to open his lunch box to show the contents to Steve, etc. Eventually the physical and visual prompts could be faded as Joey learns what he should do in response to the communication initiation of another.

If physical shaping is not possible, staff/family can quietly wait to give the individual a chance to respond and then model what the individual might have said or done. In the example case above, Mary might answer the question, saying, "Steve, I think Joey would like you to know....." or something else that includes Joey in the response or Mary may open the lunch box to show the contents.

This technique cannot be used every time an interaction occurs with an individual with ASD and their typical or more social peers. Do try to implement it whenever possible.

12. PHYSICALLY PROMPT A RESPONSE. When someone initiates communication with an individual with ASD, and the individual does not react visibly, gently turn the individual towards the person who spoke to him/her. If children and adults receive NO response for their initiations, eventually these initiations could decrease or stop completely. Try to prompt some kind of physical response from the individual.

This can become a goal for speech/language therapy or social skills training. It could be worded like, "When someone speaks directly to Kaitlin, Kaitlin will turn her body (orient her body) towards the speaker." or "Robin will hold out his hand to take a paper offered by another person."

Avoid turning the head and face of another person. To do so is VERY intrusive and can result in problematic responses. Avoid constantly saying, "Look at (the speaker)" because we do not know if the individual is actually able to control where his eyes go in every social situation or if the use of eye contact decreases his auditory understanding.

Turning towards the speaker is a "shape-able" communicative response. Other responses that can be quickly and gently shaped are extending a hand for a handshake, pointing, moving towards or away from a person or thing, handing an object to another, taking an object offered by another, etc.

If the individual is uncomfortable with or resists physical shaping, do not use force. Instead, create short, simple video tapes that the individual can watch. In the tapes, various children and adults can slowly model how to turn towards someone who is speaking to them or use other responses. Drawings, cartoons, dolls or puppets can get these points across to the individual as well.

It is essential that individual with ASD learn to respond to others as early as possible so that peers and others will know that the individual is "listening" to them. This is an important goal for speech/language therapy. Otherwise, over time, the individual with ASD will experience further isolation from the family, peer group, instructional staff and members of the community. This applies to individuals who are considered "higher functioning" as well.

13. DO NOT PUT THE CHILD OR ADULT'S NAME AT THE BEGINNING OF EVERY INSTRUCTIONAL CUE. Be careful not to put the individual's name at the beginning of each instructional cue. Gain the individual's attention, pause, and then give the instructional cue. If we begin each instructional cue with a name, the individual may only attend to the name and not the content of the instructional cue. They may not attend to instructions given to a group by someone who is not speaking directly to the individual and saying the individual's name first.

14. Be sure to work on two essential skills when you are communicating. One essential skill is "Listen and Do" and the other is "Read and Do." Everyone needs practice in responding to spoken information and printed information quickly and accurately. These skills can be taught in a game format and systematically practiced in multiple environments. These skills increase the child or adult's ability to interact effectively with others.

About the author

Barbara T. Doyle, MS is a clinical consultant and co-author with her sister Emily Doyle Iland of ASD from A to Z (a Spanish language edition of the book is also available). For more information about the book, go to http://www.asdatoz.com.

You may contact Barbara by email: btdoyle00@insightbb.com or by writing to #1 Forest Green Drive, Springfield, Illinois 62711. Barbara's website is http://www.barbaradoyle.com.

Copyright ©2003

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