It is perplexing to meet someone with a great deal of language but whose social life is extremely limited. The person knows a great deal but rarely has two-way conversations. He often insists on his ideas and his partners often feel disregarded or just tools for listening to him. Such persons are often diagnosed with Asperger’s syndrome, which refers to a verbal stage on the ‘autistic spectrum’. They often lose many social and employment opportunities, not because of a lack of intelligence but because socially and emotionally they have many limitations. I currently work with persons diagnosed with Asperger’s syndrome. While they differ in many ways, they have some conditions in common.

One, they show impairments in socializing in conventional ways, with problems in social play, modeling and turn taking.

Two, they rarely use language for two-way conversations, preferring monologues and, performances.

Three, they display ‘apparently’ nonfunctional behaviors such as movements and mannerisms that are often distracting.

Four, they may disregard or misunderstand others’ concerns and viewpoints.

Five, they have difficulty being included in society as they often are excluded because of their inappropriate emotional and social skills. In general they can be described as persons who have learned language but not reciprocal communicative relationships. They often know a great deal of information but do not know much about what other people need in relationships.

What is interesting about this profile is that many of us can get into such patterns of communication when we are anxious, rushed or it may just be part of our personality at times. As many are finding, effective conversations, involved highly developed skills that even the most verbal of us still have a lot to learn about.

With such persons, whether diagnosed or not, Communicating Partners often begins focusing on social skills that they may never have learned. We coach them to take turns, to respect and accept others’ ideas, to respond meaningfully to what others say, and to learn the consequences of their behavior on others and on their own well being.

Such persons may have been unintentionally taught to communicate the way they do. The heavy focus in early education and treatment programs is to learn language not conversationally, but in a directive, often rote way, that results in reciting language in monologues, telling everything they know. This academic base of language does not teach the child that language is mainly a two person event and that success requires listening and responding beyond just talking and having the ‘right answer”. Many expect that as long as the child learn a lot of language, he will have conversations automatically. That is simply not the case.

I have found that many parents and professionals assume that conversational skills will be learned in school. Unfortunately, may educational and therapeutic approaches do not usually support conversational skills? In order to have reciprocal relationships, persons with Asperger’s syndrome like Donna Williams (1999, 2000,) have had to struggle learning to take others’ perspective, take turns, and value continued social connections over information with people. Donna’s insightful books tell of a life of learning to have conversations in a world that is very difficult to understand and appreciate.

Communicating Partners teaches persons with Asperger’s syndrome and their life partners to develop genuinely conversational relationships. They learn to emotionally connect and empathize with each other so that neither feels alone nor disregarded. They learn that social connections are, in the long run, more important for successful inclusion than the cognitive knowledge that is usually the focus of education. I find that many persons with Aspergers’ syndrome really do want close relationships but they have never learned that they are possible and can be very enjoyable. My current work with adolescents reveals that they have not learned the value of emotionally attached relationships. And their parents and other adult partners can learn fairly easy strategies that help build conversations with their children

Currently, I am developing and testing a Conversation Learning program that teaches verbal persons, including ones with Aspergers, and their life partners basic skills for using language for authentic conversations rather than self-centered and one-sided talking. The book, Communicating Partners (2004 Jessica Kingsley publishers and Amazon.com)

describes many problems and approaches of this population. I hope to publish a clinical program for this population but for now I am interested in working more with families of persons with Aspergers and offering training workshops for persons responsible for this population. If interested, contact the Communicating Partners Center.

John (W) was four years old. While he had a vocabulary of over 300 words, he mainly talked to himself in rote phrases, rarely communicating with his language. His parents saw him as intelligent since he read at the first grade level, solved many problems creatively, and mastered computer games. They were concerned that he spent his time mainly in isolated and obsessive activities, resisting intrusions violently. When he began an activity he was insistent about continuing it and seemed to get lost in it with little concern with finishing it. John was a boy with substantial cognitive skills and considerable language but very little social communication or motivation to interact with people. He had limited social-emotional skills such as self-regulation and empathy.
As his second year in the program progressed he showed more language, but it was not communicative. He appeared to have his own language, which his family did not understand. Unless he was in control of the situation he showed considerable anxiety, which prevented interaction with others. He received several diagnoses- OCD, bipolar disorder, Attention deficit disorder, Emotional disturbance, Oppositional behavior, mild retardation, schizophrenia, and mild autism. His parents were at their wits end, confused with so many concerns and conflicting recommendations. Videotapes of John between six and 12 months old revealed that he had been interactive, playful and beginning to talk. By age two he was resisting other’s contacts vigorously, insisting on playing.

During the first month, we observed John in the clinic and home for several hours, to assess his cognitive, motivational, communicative and social emotional development since each varied across situations markedly. We identified the situations in which he would interact, and then recreated them to begin the program. The first goal was to help John interact back and forth in ways not totally on his terms. We discussed with the family how to enter his world without threatening him and to read his emotional state to identify when he was open to social contacts. John’s mother recalls an important early breakthrough when she began visualizing John and herself on a development staircase and that the closer she was to his step the more he would learn. She came to realize that she was often acting as if she was on the tenth step and John was on the second step of the staircase. She admitted that she wanted him to have adult conversations, socialize typically, and enjoy others, and come to realize that her expectations were far above what he was ready to do. The program began by teaching Jodi to play in John’s world and to accept anything safe that he did. His first pivotal goal was to tolerate Joint activities with others. We explained that regardless of how much language and knowledge John had by himself, he would fully develop to the degree that he interacted with others. We discussed several topics over two months to understand how critical social interaction is to developing cognition and communication. We practiced several strategies such as balancing to build a reciprocal habit making the interactions stress-free and enjoyable) and matching their behavior to John’s interests and abilities Joining into John’s play took considerable patience on the family’s part. They began by playing parallel to his play without intruding on his activity. He resisted at first but began to enjoy and attend to them when they imitated him with no demands. Jodi realized that she had believed she needed to teach him the “right” way of doing and saying things, which resulted in rage and resistance. Now she saw that when she simply joined in his play side-by-side, he began attending to her more and even imitating the ways she was playing at times. He now occasionally smiled and began showing her things he was doing, which was a first. She was learning to fine-tune herself to his interests, his emotional state and to his current abilities. The more she acted like John, the more he attended to her and invited her into his activities. It appeared that he was more open to her once he was convinced that she was not going to dominate his play with directions to do things that did not interest him or that he might fail. Learning to be safe in social interactions was a first major phase of the program. The family was pleased when he began enjoying their company more, if even only occasionally, and when he began coming to them more to interact and to act and talk in ways they were doing.

In general Jodi was becoming a very responsive partner to John, and she found that when she did less in an interaction with him he did more. It was clear that there was some real basis for an emotional attachment between them when she accepted what he did and responded in ways that helped him succeed. John’s mother no longer worried about whether he was talking or playing in the ways she thought were” appropriate”. Her concern now was for him to accept her into his activities and experience success interacting with others.

The next phase of the program was to develop the pivotal goal of Intentional communication. The family was very concerned that John rarely talked to others. While he did have some language, little was understandable or used with others. When the family focussed on helping him make sounds clearer, he was frustrated and avoided them. We discussed how any behavior can communicate and demonstrated that responding to any of his behaviors without correction would help him communicate more . The family found that when they responded to all of John’s sounds and words without judging them, he began talking more to them and less to himself. His self-talk and insistence on his own topics still predominated, but his mother was enthusiastic that he was beginning to “talk to me at last”.

John interacted more when they had a schedule of predictable routines on a one to one basis. Previously, most of his time had been in groups with considerable distraction. We discovered that John found many kinds of stimulation aversive and he retreated. The home program then focussed on five daily routines that he would allow his parents into and that resulted in little agitation. Avoiding agitating situations became a major issue since once John became anxious, he violently resisted social contact for up to several hours. Jodi was learning when John was ready to learn and when he was not. The daily routines were a computer game, photograph books of the family, car rides, bath-time and quiet bedtime.

In the daily routines, Jodi acted and communicated in ways John did and then occasionally translated his unclear speech into single words that were appropriate to the situation. Gradually, John began to respond more to her and to direct his words to her occasionally. The progress was slow but it was occurring. We needed to reassure the family that John’s habits of not interacting were longstanding and that he would learn that interacting was safe and rewarding only slowly. John’s family learned to ignore his undesirable behavior and focus on responding to the appropriate social contacts and language that were increasing. Jodi learned that, while her prior interactions had been mainly verbal, now she found that when she reduced her talk greatly John began talking more. We also noted that his speech became clearer when he directed it more to others than to himself and when we reduced our language to his level.

A major problem we have found is that children with Down syndrome are usually not suppurated in their sound and speech development long enough. Too often people give up on speech in favor of signs, pictures and augmentative devices when a child is not talking much at 3 or later. Then the child ends up getting far too little sound practice to develop speech.

Our approach is to teach parents to make sure their childish highly interactive first with any behavior he can do. Then the next step is to make sure he becomes a constant social sounder, which means that hear nod his partner spend much time doing sounding conversation together, before pushing the child to use full word than he is not ready for. When a d child with Down syndrome only learns words for needs and for school, he will not become a social speaker. Too many of our children use language to answer questions and to perform scripts but not to have conversations. However we know many children with Down syndrome who, when conversationally trained, become highly interesting and conversational person.

Note: It really saddens me when I meet a children with Down syndrome six and older who have little or no social language. By social language, I mean words used spontaneously to communicate casually in daily interactions. (I do not mean one with words he can imitate or label mainly.) I am particularly angry when I hear, as I recently have for 5 children that therapists and teachers have said that if they do not speak by 5 they probably will not do so. THAT IS ABSOLUTLELY WRONG.

While I do not oppose signing or pictures or machines to get the child started communicating, I am extremely concerned when that is the only treatment given. I strongly encourage you to make sure that you help children with DS communicate with any vocal ways they can do. This may take 2,3 or more years but believe me; your child needs that amount of oral motor practice. Down syndrome means low motor tone and such tone problems are most affected in the fine motor coordination’s in the oral system. Most children with DS can learn to speak fully and conversationally. They may always have some differences in articulation. But if we allow them the time to communicate with sounds without giving up and depending mainly on signs or pictures or communication machines. They will, with frequent interactive and matched practice become effective conversational partners. This definitely requires that you and others have a daily habit of conversing with the chill all the time. Even when you do not understand everything they say.

Please stop thinking of speech that is not adult as a mistake for the child with DS-if a child says ’sa-su’ for ’sunset’, that is NOT a mistake. It simply is not an adult form. Think of this as a ‘developmental step’ for the child and then immediately give the child a clear matched model ’sunset’ to show the child what to do next.

It is much more important to have frequent and long conversation with a child even when you don’t understand much that to stop and correct the child. Correcting discourages the child from interacting more with you. And the key here is that the more a child interacts with people the more he will learn to communicate.

I am currently working with several children with DS who’d did not talk by 5 but who are now talking once their parents began imitating all their sounds and began focusing on playful sounding conversations rather than their prior stance of waiting for words and ignoring the sounds that are the seeds for words. They also pushed the child to produce words that he simply could not do. We constantly see adults try to get children to do impossible communications and then wonder why the chill does not try at all.

You can get more information about Communicating Partners and Down syndrome on our website. Barbara Mitchell’s five-year developmental story with Mark is very interesting and informative. By the way, that Mark is now 19, and having great conversations everywhere. He doesn’t know a stranger and if he’s there, everyone gets to know and enjoy him. A real diplomat and very empathetic.

LEARN

Most of us make sounds with little effort and no awareness. However, for many children ( some adults) making sounds is a very difficult physical activity. These persons may have low motor tone (Down syndrome), weak listening skills, neurological concerns (apraxia), few effective speech models, etc.

If your child is not speaking easily, realize that making sounds may actually be difficult. Many children with delayed speech make more sounds when they are playing alone than when interacting with people. Our research shows that these children often have to compete with speech that is too difficult for him to try to do. Speech does not just come like hair and height, your child’s speech come from you. How you talk, how often you talk with your child, and what you talk about have profound effects and your child’s speech development.
It is understandable that parents are in a hurry for thief child to talk. Parents often assume that if a child has sounds he will communicate with them. That is often not true. Many children do not communicate much with sounds. This happens when his partners do not frequently respond to the little sounds that they may not consider important.
When a child has difficulty making sounds, it is essential that his life partners respond to all his sounds so he learns that sounds are the best way to communicate. Too often adults give up on speech far too soon. Many children can learn to speak as tale as 6,10, 15. But to do that he needs partners who have frequent conversations with any sounds he can do.

SEE

Observe your child several times and ask a few questions: how often does he make sounds? 1-10 1 = never 10 = constantly

1. How often does the child make sounds by himself (not to others)? 1-10
2. How often does the child direct sounds to others?
3. How often do you respond to your child’s sounds (not words)?
4. How often do you keep your child sounding in conversations?
5. How often does your child imitate your sounds/

CONSIDER THIS!

Be fair: If you expect your child to learn your language, you must learn and speak his first.

PRACTICE

Make sounding conversations a daily frequent habit.

Begin by selecting five daily routines a day to practice sounding conversations with your child.
Use these strategies every day. You may want to practice one at a time.

1. Wait for child to initiate sounding
2. Respond to your entire child’s sounds then wait.
3. Take turns with sounds playfully
4. Respond to sounds with a word that fits the situation.
5. Treat your child as his own language-your job is to learn his language then translate it simply to yours.
6. Accept all sounds at first without corrections. -You can give him a new sound but do not consider his a mistake.
7. Match: Half the time: talk in ways your child can talk- the other half talk normally.
8. Make you life one long conversation with sounds your chill can do.

Think of this: If you are learning a foreign language as your children actually are, you will understand the simplest and shortest amount of language at first. In that case the problem is not that you have a receptive language problem but rather your partners are giving you much more stimulation and information than you can handle at the time.

So…if your child is not responding to you, shorten what you say. A rule we use at times is to talk only about one to 3 words longer than you child can say.

Three other strategies have helped me get children understand language.

1. Talk about things your child know and cares about.
2. Use visual cues and physical expressions boot th keep his attention and to act out the meaning.
3. Use real life action words more than concepts or adult words.

Conclusion: Matching is one of the keys to receptive language. You will find your children understand you more and talking more when you follow the general matching rule: “Act and communicate in ways your child can try to do.”

This experience made me think, since taking turns and waiting are so difficult for both adults and children, that a ‘talking stick’ would be a valuable tool to learn to take turns and really listen to a partner.

PRACTICE TIME

Engage your child in a conversation and use a ‘talking stick’– anything easy to hold will do. The rule is that as long as one person has the stick, no one else talks. Just by exchanging the stick after each person has a reasonable turn (less than a monologue but perhaps a full idea) both the adult and child will have a physical ‘motor learning’ experience to cue them into the cadence and back and forth flow of a real conversation.

Try using the taking stick with your child five times a day: It may take a while to get the game of it, but once turntaking is understood, the stick will discipline each of you to have your say then silently listen so you can respond meaningfully and sensitively to his real message not just the partner’s quick interpretation.

Try this and tell us what happens. Taking turns is a very difficult thin to learn for both adults and children. The talking stick gives you a powerful physical cue that helps you wait and allow the child enough time for him to get his message to you.

We have been told that our son needed to be trained to learn cognitive skills like numbers and colors for school and to be reduce his “autistic” habits and become compliant before he will be come social and communicative.

Why does Communicating Partners begin by helping a child become social first?

Answer: First, because that is the way child develop and learn. Most scholars in child development agree that the key to learning in daily life is by socially interacting with people the child is attached with and who act and communicate in ways the child can do.

In fact it is now evident that a child will learn more of what he needs to be included in the social world from frequent daily interactions spontaneously than he will from intensive drilling on facts and skills for school. Making a child a successful student does not make him less autistic in real life and less isolated from society. Early and intensive social relationships are needed for that.

A second critical reason to begin by helping a child be spontaneously social is that the more directive and intensive academic and compliance approaches can have the effect of discouraging the child from being social and learning what he needs at the natural movement. Such a child can easily become dependent on his teacher or trainer and not learn how to socially learn on his own. Then he becomes a student who knows what others think he should learn but he does not learn what he needs to effectively navigate his own interpersonal world. I know children with autism who perform, and answer very well but are at a loss in daily interactions where his real life learning must take place.

A third reason for our focus of social learning first is that we and others have been very successful with many children and families in reducing the time that children are isolated from society. Both our research findings and our clinical reports from families show that many children with autism can become social when their families enter the child’s world responsively and nurture who they are becoming rather than distrusting their social potential and trying to make them into compliant students learning a set curriculum rather than an individualized life.

A fourth reason for our focus on social learning first is that it is something that anyone in the child’s life can do. Treatment is no longer limited to trained and paid persons, but is available to anyone interacting daily with the child. Children clearly can learn in every interaction if it involves two features: one, something the child can do, and something the child is internally motivated to do, and three, something the child can use in daily life.

A fifth reason is that, contrary to the belief and practice of many, most children diagnosed on the autism spectrum can become much more social and genuinely communicative than they are. Observation of many children with autism reveals that very little attention is usually given to seeing if, indeed, the child can socialize with persons who actually enter his world of sensation and action.

THE MORE YOUR CHILD INTERACTS WITH PEOPLE, THE MORE SHE WILL LEARN COGNITIVELY THINGS SHE CAN USE.

SOCIAL LIFE IS COGNITIVE LEARNING.

• First, autism is not a developmental death sentence. I know a great many persons who have been diagnosed with Autism and then they progressed into very social and communicative and productive persons.
• Second, many diagnoses are made very quickly with very little information about the child other than a few minutes observing some “strange’ behaviors. The younger the child is, the less reliable and correct is the diagnosis.
• Third, Autism means the child has three pervasive impairments: problems in interacting with people, problems in effectively using language to socialize with people, and problems in acting in unusual ways and not readily modeling the socially acceptable behavior of his life partners. Consequently, any treatment must address three goals: 1. Helping the child interact and socially play with others, 2. Helping the child use language in social situations for conversation, 3, helping the child to learn to act in ways life partners act and to adapt to the internal and external over stimulation in their lives.
• Fourth. Be aware that the majority of treatments offered for autism, at this time (beyond medical approaches) focus on trying to make the child into a dependent and compliant student. The problem is that autism is not primarily a problem in cognitive, academic or compliance development; it is a problem in failing to socialize and build relationships. So, be very careful assuming that a program that teaches your child mainly to learn for school and to be obedient is what he needs. Many children have succeeded in becoming compliant students, learning for school success and to not bother many people. But these children are just as or even more autistic (socially isolated and inappropriate, non-communicative and unaccepted) than they were before they were trained to be what others wanted them to be.
• Autism is a disorder in socializing—the first and most important treatment approach is to teach the child and his family to build a highly social life with any behaviors the child has available.
• Fifth, the family is the most effective tool for helping a child called autistic to socialize and communicate. Children will not learn to be generally social and communicative with strangers or in groups of over stimulating children. They need one to one relationships with people who are emotionally attached. Expecting a child to learn to socialize and communicate in therapy lessons is like expecting a child to learn piano with weekly lesson and no practice at home. Expecting a child to socialize and communicate by being taught to be a passive student is equally unrealistic. And expecting a child to socialize and communicate in environments that overwhelm and compete with his abilities is also more a fantasy than a reality.
• Sixth, the common view that autism is forever can have very dangerous effects-it can lead families to give-up, and to focus more on the differences than the child’s strengths. And the fact is that the only way any condition can be determined to be permanent is to perform an autopsy. As of today, there are no defining medical signs distinguishing persons with autism with others. The ’soft” neurological signs that do occur are often temporary in children whose nervous systems are very changeable. This is not to say that some persons with autistic features may always have some of them-but even with them, many live very productive lives.

Families are learning all the time how to interact with children in ways that get them to gradually but surely socialize and communicate more and more. The family is the answer. The most effective role of professionals is to learn how to work with parents as mentors and coaches who join the child as closely matched and responsive partners in the child’s own daily life.

Dr. James D. MacDonald, Director Communicating Partners Center

What is it? Children usually begin to speak in ways that are at first understandable to no one but very familiar persons. Such performances are not “mistakes”; they are normal steps in the difficult process of coordinating many muscles. This process is often very difficult for children with language delays or ones with little practice talking. Until the child is a habitual communicator with words, it is very important not to discourage the child from saying words in any ways he can.

Consequently, unclear speech should not be seen as “error’ but rather as natural developmental steps that you can support by showing the child the next step. Unclear speech is an attempt to do what the child physically can do at the moment. Unclear speech is like a missed attempt at a basket in basketball-and as Michael Jackson says, ” I’d never be as good as I am if I had not missed over a million baskets.

Speech clarity takes a great deal of motor practice, more for some children than for others. It is critical to accept any attempts at speech at first and to not discourage a child from speaking with negative feedback or attempts to get him to do things he is not ready to do.

Why is it important? While it is eventually important for a child to speak in ways that most people understand, it is equally important not to expect or pressure the child to speak in ways he is currently not able to do. Children develop speech in three general stages.

First, the child has “self-talk” in which he makes sounds as he plays and practices muscle co ordinations mainly for the sensation value. These sounds may or may not refer to real words and they may or may not be used to communicate with others. It is important for partners to respond to these early sounds so that the child does more of them and so that he learns that sounds will be the most effective way to communicate.

Second, the child has “family or idiosyncratic speech” which includes attempts to communicate that usually only his family understands. This speech can be considered the child’s own “language” and the family’s main job are to translate the child’s language into theirs. This is done by simply giving the child a word in the mother tongue in response to his idiosyncratic production. In this way the child hears a new way to talk without feeling that he had done something wrong.

Third, the child then develops “conventional” speech, which are words that most of the community can understand. For language- delayed children, this stage may take years. The key is to realize that each child speaks as he can at the moment, and if partners want different speech, it is up to them to show the child what to say next and not to respond in ways that often discourage the child from talking.

What can you do? The most important thing to do to help a child develop clear speech is to respond to all of his speech attempts, however unclear, so that he keeps talking. If we make talking work for the child by asking him to repeats or by not responding, he is likely to talk less and then get less of the practice he needs to speak more clearly.

Three strategies are very helpful to improve your child’s speech clarity, responding and translating and making talking playful.

1. Responding. Respond to all of your child’s speech attempts, even if it means imitating unusual productions. Many partners find it awkward at first to imitate a child’s unclear sounds, but many have found that imitation keeps the child talking more so that he has more practice. If a child stops talking all opportunity to improve speech ends. The more a child speaks interactively, regardless of the clarity, the clearer his speech will become.
2. Translating. Regardless of how your child pronounces a word, it is an important accomplishment for him and should be supported with a word that translates his language into yours. If he says “akaba” when entering the bathtub, simply say “bathtub ” clearly.
3. Being playful with sounds. Adults often take talking so seriously with language delayed children that children do not enjoy the process. Consequently, they stay away and talk less when it is seen as failure and work. Many parents have found that children talk more clearly when they treat sounds as the child’s most important toy that can be exchanges back and forth as balls are exchanged when a child wants to play ball. The more you think of sounds and words as playthings, the more the child will participate and practice his speech.

Measurable outcomes: ( for use at home and in intervention plans)

1. The child will make new sounds and combinations of sounds.
2. The child will change his sounds to be closer to his partner’s productions.
3. The child’s speech will be clearer to his family.
4. The child’s speech will be clearer to strangers.
5. The child will imitate the speech of others more closely.

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