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MY MOM!!!

Summer can be a wonderful time for mothers of children with autism. A mother may have more time to play with her child. Sleeping issues may not be as difficult if a child does not need to be rushed out of bed and off to school in the morning. For us in the midwest, there is the whole wide and wonderfully warm outdoors to play in. Everyone may be getting more physical exercise, which is good for mind and body. Summer trips to new places, while a challenge in some ways, help many young children learn new communication skills, and that is exciting for everyone in the family. Summer is good in so many ways. But, summer can intensify family stress as well. One issue that can overwhelm the family is if a child with autism decides to stake an exclusive claim on mom.

About this time of year, when summer school programs are finished and school is still a month away, I begin to hear from some very stressed mothers who have been "claimed". It can happen at other times of the year, but summers seem like the most common time for a child to become obsessed with mom, staying close to her at all times, even trying to control details of her behavior. I don't want to wear a pony tail all the time but my daughter becomes distraught if I don't, one mother wails. I can't even go to the bathroom alone! another mother says. I just want to get dressed by myself! says another. I can't go anywhere or my child will scream for an hour --and even his dad can't console him! a third mother complains. I have heard these kinds of stories every year since I started working with children who have autism but I heard all of these particular stories just this week!

It is hard enough for mom if there is just too much togetherness, but it is overwhelming if a young child with autism becomes obsessed with telling mommy what to do. Fathers often point out that their son or daughter does not try to tell him what to do. This comment alone is enough to set an overwhelmed mother's teeth on edge. But the follow-up comment is what causes real depression or rage and that is when the father explains that he would never follow any unreasonable demand from a three year old. The implication is that the whole problem is actually mom's fault. Most grandparents and professionals, by-the-way, will side with dad, if consulted. After receiving advice from Dad alone or Grandma and Dad, or Grandma and Dad and a social worker, Mom usually feels much worse. She may try to untangle herself, "set clear boundries", and implement behavioral programs, but more times than not problem continues. Now, her failure seems compounded.

You have to wonder, if you are an observant person and see the same issue come up over and over again, if there isn't something more that could be said or done to help mothers and their children through this. I am certain of one thing and that is that mothers need a lot of compassionate support to get through the Mom is Mine! issue.

Some of the things that I have suggested to mothers over the years have helped, but it is easy to underestimate both the tenacity of a child with autism and the psychological complexity of this issue from the mother's point of view. As a Speech Language Pathologist, I know that I feel ill-prepared to support mothers fully through this issue. Perhaps someone will leave a comment below with some sage advice. I go back to work next week and will pass on any words of wisdom.

Talking to Others and Talking to Ourselves

Andrew is five years old and he has been struggling unsuccessfully to hang on to words for years. Somehow a word just disintegrates in his mind even after Andrew learns a new one and that word may not be heard on his lips again for months or years . It is frustrating for him and for his family because in a situation where he was able to communicate last week, he may not be able to communicate this week.

A few months ago, we started to show Andrew how to use a special computer that can talk for him--a Springboard Lite. He was using PEC's quite well at school, and it has been a wonderful communication system for him, but his mother found it difficult to keep track of all the pictures that he needed at home and he never seemed to have the right pictures to communicate things that he really wanted to communicate anyway. Andrew was most motivated to communicate when something new and interesting happened like when he discovered a stop sign on the Oreo Cookie package. There was no way to talk about this with the PEC symbols that he had. But with the talking computer, because there are thousands of picture symbols already programed into the machine, it was possible for mom to create a page about the stop sign on the cookie package in about five minutes. On occassions like this, Andrew would be running back and forth across the room, touching the stop sign picture and flapping his hands until when his mom could hand Andrew the newly programed computer and he would then start talking with his machine right away saying something like, There is a stop sign on the Oreo Cookies. Awsome! That few minutes of programing would give Andrew something to talk about for two days.

One cool thing is that Andrew seems to be retaining words that he uses often on the talking computer. We don't know if he would truly retain these words over an extended period of time since we are not taking away the talking computer to see, but he does spontaneously speak using words that he previously only said on the talking computer. Where before Andrew might have said one word, cup, at dinner, now Andrew has at least twelve foods that he can spontaneously ask for with or without the talking computer. Andrew is doing a lot of self-therapy to learn new words since he spends time on the page about food pushing the buttons over and over even when he does not want to eat. This is true of the food page and it is true of other pages as well. Preparing him to take a train ride recently, his mom found a YouTube video clip of the train that they would be taking and Andrew and mom watched this clip a few times. Then she made him a page on his computer to talk about the upcoming train ride. Andrew pressed buttons on this page over and over in the days leading up to the train ride day. Andrew did not have his talking computer with him when he actually went on the train ride but he was able to say all the things he had practiced saying about the train ride appropriately. We are going on the train. This is fun! We are going over the bridge. I like trains.

Language is such an important human capacity and even I underestimate how important it is and need to be reminded. Andrew reminds me every week as he uses this machine better and better and for more and more purposes. Here is the story that got me teary today. Andrew has been unwilling to have a bowel movement on the toilet even though he can urinate in the toilet independently. His family has worked hard to convince Andrew that he should consider this option but to no avail. They know that Andrew does things in his own time. A few days ago, Andrew started pushing buttons on the talking machine to say You need to use the toilet. Mom did not program the computer to say this, he just found the buttons on his own to say this phrase. When mom thought he might be communicating a request to go to the bathroom, he made it clear that he did not want to go at all but he persisted in pushing those buttons over and over for two days. She wondered why he was saying this over and over but, after all, he is five. On the third day, Andrew's big brother called his mom excitedly saying, Mom, Andrew is pooping on the toilet! Andrew had independently decided to do this. Apparently he talked himself into using the toilet by telling himself to do so for two days and working up the motivation to do it on his own. He is now out of diapers.

We imagine that a child who can't communicate verbally with others is none-the-less able to communicate with himself or herself. But apparently, not so much for many children with autism. They do not have the language skills to tell others what they need, think, feel, remember, wonder, imagine, plan, wish, consider..... Nor the language skills to tell themselves what they need, think, feel, remember, wonder, imagine, plan, wish, consider....

It seems like a lot of work and money to provide a child like Andrew with a computer that is complicated for everyone to learn and costs about as much as a good used car. But giving Andrew the ability to communicate with others and communicate with himself is proving to be truly beyond price.

Grasping a New Idea

I could not grasp how the system worked I told my husband. I could not wrap my mind around how it all fit together, so all I could do is memorize exactly what to do, telling myself each step over and over, but then when I would forget a step, I would be lost.

It does not matter what the topic was in this conversation. I was talking about a new computer program but it could have been anything. Just note, as you read the paragraph above, that all the words in orange refer, originally, to ways that we interact physically with the world. We learn the meaning of grasp, as we grasp things with our hands and things like blankets are wrapped around our body, we take steps with our feet and are lost when we end up in a physical location that we do not recognize with our eyes--or perhaps when we don't know how to move, with our body, back to a physical place where we feel safe and where we can get our physical needs met. There are literally thousands of words that we learn in a concrete way with our bodies and then we extend the meaning of these words to describe more abstract mental states and situations including feelings, beliefs, and philosophy. We can physically experience things with our bodies and build a set of neurological connections in our brain to handle these physical experiences but with language, we learn to describe these physical experiences with words and then understand each other because we have all had similar physical experiences. Language is so powerful, though, because our we are able to extend the meaning of these words, apparently still making a connection to the neurological structure that we built through sensory experience (the same brain connections). We end up able to think and talk about highly abstract ideas and still understand one another--based upon common physical experiences. Our understanding of these abstract concepts continues to be related, neurologically, to body sensations and body awareness. Of course, one can be blind or deaf or have other physical sensory deficits and come to understand the meaning of words that originated in sensory experiences but the common route to mapping meaning onto these words is clearly through body sensations.

My friend and colleague, Janet Oliver M.A., visited recently and she has been contemplating the relationship between body awareness and language acquisition. A usual explanation for one of the problems that children with autism have when learning language is that these children have difficulty with abstract thinking--that is extending the meaning of all these words from a concrete body in space meaning to increasingly abstract meanings. Janet, a specialist in neurological development, notes that children with autism often show evidence of infant reflexes that should have been inhibited in the first months or years of life. She evaluates children who struggle with coordination and body awareness, with motor planning, with integrating information across the two sides of the brain, with dozens of sensory issues that most of us take for granted because our bodies and brains were wired up pretty well by the time we were six years old. Janet says that she wonders if the trouble that children with autism have with language development might originate with the trouble these children have with body awareness, sensory integration, movement, and coordination. This is an idea, that, if true, could lead to much more specific language interventions for children who have sensory-motor disorders.

If you would like to know more about Janet Oliver M.A. visit her website at: www.planforlearning.com

Reset the Button

After trying several different ways to inspire some cooperation in a child who resisted playing the first few games I brought out, I finally hit upon a game that he loved. He and dad and I then played happily and productively for twenty minutes and the next game went well too. The child’s father, apparently having had a pretty hard day with his son earlier, commented that as a father he just had to hit the reset button more often.

It is relatively easy for me to hit the reset button that this dad was talking about, but I remember when it was not—back when I had only worked with a few children with autism. A parent is in a totally different situation than I am. For one thing, most the time the parent has only worked with one child who has autism--their own. There several reasons why it is easier for me to hit reset emotionally and try something new than it is for a parent. 1) I know a lot of games and strategies and figure that sooner or later something will work 2) I can almost always recall that I was ultimately successful with a child who was equally or more challenging than the one that I am with 3) I don’t take it personally when a child is uncooperative because children with autism all have difficulty with social interaction so I know it is about the autism 4) I only have each child for one hour and then the child leaves so I always see an end point no matter how hard a session gets. None of these things is true for the parent of a child with autism and parents feel the strain. None-the-less, to be successful parenting a child with ASD, a parent needs to know how to hit the reset button.

I mention the factors that make it easier for me, in part because parents can use these factors and others and make it easier on themselves when they need to hit the reset button. They can learn more games and strategies--giving themselves a bigger tool box and confidence. Parents can read about other kids with autism and know that others are equally challenging (or more challenging). They can increase their own patience by reading success stories. That is why I include so many stories on this blog so that parents see a success when it happens and anticipate success when it takes a long time. Parents can decide emphatically not to take their child's behavior personally and reset the button with that thought. Parents can set reasonable time limits for play and activities. Play for a half-an-hour or one hour and then stop and come back to it later after your reset button is naturally reset.

This idea of learning how to hit the reset button extends to children as well. I played with a little boy yesterday who was drumming with me. (Drumming game is demonstrated on this page.) I was following his lead and copying everything that he did. He enjoyed this so much that he sometimes fell over on the floor laughing and at one point, he took the drum sticks and starting hitting me with them! When I redirected him, he tried to follow my lead for a bit, drumming in the same way that I was, but suddenly, he jumped up and went to my window blinds and started rattling them, looking at me with a clear expectation that I would scold and stop him. He was overly excited but not angry or mischievous as he gazed at me expectantly. He did not know how to calm himself down so he went to rattle the blinds, which is a behavior I have seen many children do in order to communicate some need for adult intervention. In this case, he seemed to want me to reset his emotional state button. The excitement he felt was too extreme and did not feel good. I did not react to the blinds behavior since I didn't want it to become the way this little guy communicates with me but I distracted him and helped him move into a more calming activity. With my new and helpful phrase, I told myself we need to find some appropriate reset the button strategies for this little guy.

Bye Bye All Done

We use this song as an ending for every session.  It would be hard to overstate how much easier it is to convince childen to leave than it was pre the Goodbye Song.  It is hard to leave a place where there are great toys, you get one-on-one attention, and the whole session is all about what you like.  Our most successful language teaching strategy is talking about and thinking about a child's affinities and interests--often creating new and exciting interests that a child would like to explore further.  But, we don't have many I am not leaving meltdowns anymore because this song prepares the child to leave in a happy way. 

I posted this particular clip, because the child's wave was both cute and revealing.  We have since convinced this little guy to turn his hand around by singing our goodbye song in front of a mirror.  The first time we did it, he frowned at his own hand reflection for a moment and then turned his hand around. That was that.  We kind of hated to fix his cute little wave though.  It is often hard for kids to understand the perspective of others, even in this concrete way.  I see children put masks on so that the mask faces the child.  I see children become upset if a parent has a different favorite color.  But then, grown-up people get upset because others think or believe differently too.  So, there is a continuum of mental and emotional flexibility around noticing and appreciating the perspective of others.

Tip: Another way to see if a child understands how things look from another person's perspective is to have the child show mommy the picture and see if the child turns the picture he or she is showing mom around or instead shows the back of it to mom.

Song from http://www.supersimplesongs.com/

Watching TV, Movies and Video games—The True Enemy!

Guest Blogger:

Dr. Susan Larson Kidd

Every time I pick up a new study or read a neuroscience journal, I am reminded about how much our culture has changed our attention span. We are constantly bombarded with visual and auditory stimuli-pictures withinpictures, audio with quick changing visuals, and no time left for the imagination to fill in the gaps. We rarely have “quiet time” that is truly quiet. We have cell phones, digital planners and gadgets, music players that travel with us, and we are rarely “unplugged” in any way anymore. This is not helpful for a child with autism.

Watching TV, movies, and playing some computer games trains our brain to be passively attentive. With these activities, we can pay attention easily, but effortlessly. The more we do these activities, the more “wired” our brain becomes for passive attention—these pathways get stronger and stronger. Then, when we want to concentrate on something like listening, reading, thinking, it is more difficult to do these active brain activities. We are unable to focus on something less than interesting, and we are unable to attend fully for longer periods of time. Imagine then how difficult it becomes for children with autism spectrum disorders to pay attention after brain training in passive attention. Many things we ask a child with autism to do are not immediately meaningful. We ask a child with autism to attend and think despite a sensory system that demands a great deal of mental energy. Most of us are not burdened with so much sensory processing difficulty. It takes a lot of mental effort for a child with autism to do this and we may make it impossible if the child’s brain is wired for passive attention through many hours of TV watching, computer game playing, repeated movie watching. If we use movies, tv and computer games to fill the unstructured time for these kids, then we are only making it harder for them to concentrate in the long run. Over-riding the brain patterns created by these passive activities is particularly troublesome with kids on the spectrum because they have visual pathways that are already strong and tend to be the main mode of their processing.

Often, these movies or games become a child’s obsession. These obsessions may tell us something about the child’s creative insights and the child may develop new motivational topics. However, if allowed to participate in these obsessions for too long, the child on the spectrum becomes increasingly disengaged socially and environmentally. The child can re-create the movie or game mentally and “check out” of more demanding social or environmental interaction without even meaning to do so. Too much time on these visual obsessions can increase opiods in the brain, the feel good chemicals, and not only is it easier for the child to obsess on movies or games than on harder real-time interaction, it is it is biologically rewarded.

I have also noticed lately, and discussed with Tahirih, how many children on the spectrum “switch” into their fantasy world of TV or movie when they become cognitively fatigued. This is when we hear the child repeating lines and noise sequences from favorite shows or movies. I have a nine year old boy with high functioning autism that I have the pleasure of working with each week in a social skills group. I often demand much from this child as it occurs after a full school day and includes topics which are uncomfortable to discuss such as bullying, and angry emotions. I can always tell when he has reached his limit as he will begin to talk to me like I am part of his video game or TV show. I give him a few minutes to share that with me, jump a bit on the trampoline, and then I have him back for more instruction. This blog of thoughts on this topic is not written to pass any judgment on kids or families because there is also value to having some down time for you and your child. I write this to encourage you to think about why TV, videos and games are so attractive to children, how they impact learning, and why we want to help your child fill the time differently.

The Early Start Denver Model

My ongoing investigation of various autism approaches brought me to look recently at the Early Start Denver Model. This is a developmental approach which has integrated some aspects of traditional behavioral intervention--including the intensity and the data keeping. Dr. Sally Rogers, who is the founder of this approach described autism as a "disruption of social communicative development" (which) "creates a secondary set of processes, like the exaggerated interest in objects and repetitive patterns" She goes on to say that "if we begin very early to focus on the social communicative processes, we can prevent some of the cascading effects of autism." (see the link to her name above for the full interview with Dr. Rogers) As I was reading about the Denver Model on a Mind Institute Website (click on quote below for full article), there was one sentence in particular that set me to thinking. It was a sentence that describes one of the three main goals of this intervention approach:

• Bringing the child into coordinated, interactive social relations for most of their waking hours, so that social attention, imitation and communication can be developed and learning through social experiences can occur

Consider this. Most preschool and even elementary children are interacting socially almost every waking moment. All children need to interact socially many, many hours and every day in order to learn and grow in a healthy way. Having autism does not constitute an exception to this need for learning that takes place in a social context. In fact, the social isolation experienced by children with autism, in the view of many researchers and not just Dr. Rogers, causes many of the more troubling characteristics that we associate with autism.

But, it may take a lot more effort to make sure that a child with autism has many, many hours of social interaction in a day. I often walk into a classroom, a daycare setting, or a home and see a child with ASD who is essentially alone--even though there are children and adults close by. I see children in settings where the child has almost no social interaction beyond being herded here or there and shushed. Other children on the spectrum have hours of social interaction but it is of such an odd nature (including many of our therapies) that the child cannot possibly be expected to learn to engage in the ordinary back and forth of communication by doing these things. For example, matching tasks seem to make up an inordinate amount of some children's school curriculum and the social conversation around matching things over and over is not very interesting after a while. The adults don't want this to be the case but they find it very difficult to solve the problem of social isolation and may give up trying when instead, they need to find new strategies. If you look over your child's day and week and realize that he or she is socially isolated for many more hours than typical children are, and rarely interacts with anyone about anything he or she cares about, you may want to look over every section of every day and find ways to promote meaningful social interaction in each setting, with each social partner, with new social partners, and with you.


I promote simplified social play activities on Autism Games Website for children with autism because you, as a parent or teacher or caregiver may not know enough ways to socially engage the child in your care. Play is typical social interaction for children and even though these games are simplified they are intended to be playful and fun rather than drills. They are intended to be like the play that any other child engages in spontaneously only at a level that your child can understand. These games, if you find some that work, will help you get started with one important kind of social interaction and what you learn in the laboratory of varied kinds of play will help you engage your child in other social activities as well.
In the game clip on this page, what would otherwise be a repeated sequence of solitary play (running across the floor with a truck which this little guy likes to do often) becomes social play with no more than the addition of an interesting curvy roadway (Goodwill table place mats which now have a higher purpose than uglifying someones house). Even though I was holding a camera, I could narrate the play and engage this very new verbal communicator into a little conversation. Either I or this little guy's dad would make changes to the shape of the roadway (when he was not looking) and this way have something new to talk about every time the roadway changed. Dad was excited to see that his son was trying to stay on the roadway, as prior to this game, he ran the truck back and forth in a straight line across the floor. Blue painter's masking tape would also have created an interesting roadway on the floor and the roadway could go over, under and around things that can all be changed and discussed. Truck crashing is always fun as well.

Hyperlexia Therapy Approach

I recently met with the mother of a little boy and asked her to think about what the next step might be for her son. She said she wanted to focus on reading and writing because her son was so easily engaged and interested when any activity included letters. Given how clearly she articulated her desire to use written language with her son, I got thinking about the Hyperlexia Framework for understanding children who love letters. Some people think of children who have a relative cognitive strength in the area of written language as having a distinct developmental disorder called Hyperlexia. I thought I would go check out some therapy ideas on a Hyperlexia website.

First, I read this set of guidelines from The Syndrome of Hyperlexia: Remediation Techniques by Philips Kupperman and Sally Bligh which are very good guidelines for almost any child that I see at my clinic and a good reminder of many important principles of intervention. But not ideas at the level of a recipe book for therapy games, which is what I wanted. So, I then read an article by Ann M. Osterling, MA, CCC-SLP/L called Facilitating Language Development in Children with Hyperlexia and this was a little more specific. But not yet quite what I had in mind. Rather than continuing to look, though, I started a translation process where I took the ideas that I was reading and tried to turn these ideas into games and activities. I thought perhaps this translation process might be interesting to some readers, so here is an example.

I took the set of intervention strategies that Ms. Osterling so generously offered (I copied three suggestions from her long list below so you can see) and I began to sort out therapy techniques from suggestions that were concrete enough to be worked into a therapy activity--like sorting out cooking techniques from the cooking ingredients in a cook book:

• start where child is at (developmentally, interests), expand from there



• written labels



• be concrete when speaking
  

After sorting all the suggestions, I took one suggestion at a time and began to brainstorm therapy ideas. The first concrete therapy ingredient on the list was written labels. There are many easy ways to add written labels to games and activities that I already do. Here is a game that I modified (which was very successful, by-the-way) using written labels as a key ingredient.

This short video model is good for the purpose of explaining to a child (and a parent) the steps of a puzzle game using written labels. In real life, a much more complex activity was gradually created for our letter loving little guy. Here are some pictures of a Sign Puzzle activity that he did with his mother. Like many kids who enjoy words and letters, he has studied road signs and he liked this puzzle. He was interested in some of the names of the signs. As they played together, he chose what signs to put where on the page and mom traced each sign and wrote on each sign. He read things that she wrote, particularly when she would prompt him by spelling the word and then waiting as in S T O P spells _____. He would pipe in saying stop. He looked each time at what puzzle piece had already been copied and chose each new puzzle piece carefully to insure that all were eventually traced and written on. After doing this game with two puzzles that we brought out, he independently took another puzzle off the shelf and brought it over. His mom took this game home and was prepared and eager to trace and write on puzzle pieces together with her son as they had many inset puzzles at home that he had enjoyed when he was a bit younger. The one idea, written labels, can be turned into many more therapy ideas and since I did not find them online already, I will try to gets some video clips of the games we create around the idea of written labels and other Hyperlexia suggestions as well.

Note: Someone out there might wonder if I think Hyperlexia is a better diagnostic label than autism for some children. My answer is, no, even though, as a parent I would rather have my child called "extra good reader" instead of "self-absorbed person" which is what I think of with these two labels. But emotional preference aside, ASD (and all the variants) has won in the diagnostic label war at this time and it is the more common diagnostic label. In most places it will get a child more services. Most literature that is helpful is written using the diagnostic labels of Autism, Pervasive Developmental Disorder, Autism Spectrum Disorder, and Asperger Syndrome. I am in the business of getting children the services needed and getting parents the information needed. That said, I really like the approach to intervention described in the Hyperlexia literature and think many parents may want to know that this literature is out there.

Understanding Sam and Asperger Syndrome

Guest Post

by Liezl Venter MA CCC

Speech Language Pathologist

Co-author of new children’s book

Sam is not my son but as a speech pathologist I definitely work with a lot of “Sams” and thought that their story was important to tell as school can be extra tough for kids who have Aspergers or who are diagnosed with Autistic Spectrum Disorders.

Understanding Sam was specifically written for little ones and can be used by teachers or counselors as a resource with mainstream students to help children understand their little friend with ASD or Aspergers and for them to also practice being a good friend.

We hear a lot about bullying in general but what about kids with Autism who already have significant difficulty with social skills and who generally have a much more difficult time negotiating their way out of being bullied at school? Let’s talk about it and educate kids about Autism. I co-authored the book with Clarabelle van Niekerk (my Mom) who also works with children with Autism and fully integrates the arts (painting, music, dance and theater) in her workshops to improve social skills and the use of language. I think she captured Sam beautifully as she also did the illustrations. We hope our book will resonate with parents and little ones:-)

Thank you for this wonderful site Tahirih!

Helping Kids Get Unstuck--It Is Rocket Science

Getting a child unstuck when caught in a behavior loop that is dangerous, socially inappropriate, or simply getting in the way of learning, requires specialized thinking, like rocket science. The analogy seemed apt to me because, we always say that doing this or that is not rocket science, implying that it is not hard. But this is hard—not because implementing effective strategies is so hard but because considering them is so hard.

Instead, of accepting that a problem behavior will require more and different knowledge than one presently has, parents and teachers often continue to use strategies that they feel certain should work! Unlearning things that you believe strongly, like what constitutes good parenting behavior, or competent teacher behavior, is, as one mom recently said, like trying to change your DNA. I will provide some specific suggestions in the next post but as a starting point in this discussion, two things must be understood. 1) If a child has autism, this means that the child's brain does not process information in a typical way—and especially social information conveyed by talking. 2) Learning how a child with autism does process information will involve thinking in new ways about communication, reward and punishment, and what child behaviors require active intervention and what behaviors do not.

So, that is the bad news. Here is the good news. When you get the feel for how a child with ASD does learn, it is fascinating, exhilarating, and apt to change your world perspective a bit. There is something quite liberating about understanding behavior in a less socially judgmental way and replacing this with a better understanding of the human brain. All of our brains are subject to glitches and quirks and who among us has not wondered at the strangeness of the brain we carry around ourselves? While learning how to help your child get unstuck may be the rocket science of parenting a child with ASD, it is not beyond your capacity and success feels a lot like launching a rocket into the heavens.

Children of the Stars

Even the trailer for this movie had me in tears....

Children of the Stars

Eddy Lectures

Here in Minnesota, one of the great bargains in continuing education for professionals or parents interested in speech and language intervention topics are the Fall, Spring, and Summer Eddy Lectures. They bring in world-class speakers and charge only $50.00. These lectures are held at the University of Minnesota in Duluth. This month, on May 31st, Susan Norwell will be the presenter. She will be speaking on Emergent Literacy For the Child with Autism: The Building Block Model. It seems rather odd that I should be recommending this workshop, given that I will be presenting a workshop on the same day but she really is a good speaker and has great, clinically useful information to share. Also, my workshop is for a limited audience and so I am not really likely to lose audience to her. Plus, it is easier and more fun to talk to a small crowd so if I did, that would not be all bad. Just kidding. Come see me if you are invited but if you are free that day, go see Susan Norwell in my city, Duluth.

Teaching is not Telling

I have done taped interviews with parents from time to time, asking them after a year or so, what they have learned. I learn a great deal from these interviews. This morning, in our clinic waiting room, I was reminded of a particular interview. It was an interview where a mother told me that the most important thing she had learned was that teaching is not telling. I had not said this, at least not in these words so I was glad she went on to explain what she meant. She said that in her childhood, she saw adults tell kids what to do. She had learned that good kids did what their parents said. Good parents told their kids how to behave. Her intention was to be a good parent and to have good kids and her husband was right on board with this. So, they were nearly in despair when I first met them because their seven year old son ignored, disobeyed, and argued with them about nearly everything. They felt like bad parents with a bad child (whom they adored none-the-less.)

This mom was shocked when she truly began to understand that in order to teach her son to behave more appropriately, she had to show him, step-by-step how to behave. Likewise, she had to show him any new skill because he never learned new skills without visual demonstrations or some kind of visual support. She said her parents had never done this with her, rather they had just told her what to do and she had done it. Spanking might have been mentioned occasionally. She was shocked that she could not parent in the same way with her son and expect the same results. But she came to believe that her son really could not do what she told him to do, simply because she told him. This is the nature of the receptive language disorder most common in Autism Spectrum Disorders and in my experience, it is a very hard thing for parents to believe. It is really hard to believe, this mother said, when your child appears to understand language. Her son could talk, although when you listened closely, he was restricted in what he said, mostly to memorized language from books or movies but also many memorized argument phrases. Their son, like most the kids I see, used his memory to guide his behavior. He did what he had done before or what he saw done, not what he was told to do.

As she looked back on our year together, this mother remembered how hard it was to ignore the arguing routine that their son had perfected and respond to him with, Let me show you, just watch. They learned to move across the room to stand next to their son and demonstrate what they wanted him to do without saying a word in some cases. They also made lists for him (he could read and used written language quite well to guide his own behavior). They wrote stories and showed him pictures of what they wanted. If I had known how well video modeling worked, they would have made videos to teach him new behavior and new skills. These strategies were successful enough to be convincing but nothing was a quick miracle solution. Their son had seven years of coping by refusal under his belt. Over time, their willingness to show as a teaching strategy rather than tell as a teaching strategy resulted in less refusal and less arguments and more and more learning. Their understanding of their son changed dramatically. Their understanding of themselves as inexplicably bad parents changed as well.

As this mom, explained, we learn our parenting strategies early and usually by watching our own parents. In fact, we unconsciously imitate parenting behaviors even if we don't intend to do so, as when I say things that sound exactly like things my mother said--same words, same tone, probably the same knowing look on my face that drove me nuts when I was sixteen. I don't have autism, so I understood social hierarchies as a teenager and waited until I was a mother and had a teenage daughter before I imitated my mother's adult lecturing a teenager tone of voice and words. Kids with autism are much more likely to imitate the dramatic and powerful sounding language as soon as they hear it. Thus explains, the little girl in my clinic this week, who, when her brother told her he'd be right back, replied like a little queen ordering her servant around You will say, I will be right back, ma'am. Her brother grinned and told us that Mom's trying to teach her to be polite. Demonstrating behavior to a child with autism works even when you don't want it to.

The most effective teaching really is demonstrating, showing, modeling. Children, all children, but especially children with Autism Spectrum Disorders, will learn best by watching and imitating. At one level, parents know this but they don't always know how to use this principle. I work in a play-based clinic and parents watch or participate in every session. We play with kids in order to teach them new communication skills and it clearly works. Yet, I watch parents come into our waiting room, where we put out new and interesting toys every week and rarely do they play with their child while waiting for a therapy session. Most parents, if they interact at all with their child and the toys will slip into the role of director or corrector or tester. They do not sit on the floor with the toys and play but rather watch from the side to see that their child does not make too big a mess or get hurt or behave selfishly with another child. They might tell their child a few things about the toys and test vocabulary knowledge by asking things like What is this called? and What color is this? Parents behave this way because they long to be good parents and have good children. Telling is teaching in the minds of many adults because they saw their own parents fulfilling the teaching role in this way.

I was watching a new parent in our clinic interact with her daughter in the waiting room and starting to form an intervention plan this morning. This is when I remembered that parent interview where the mom said Teaching is not Telling. I knew that this would be an important new concept as I watched mother and daughter together. The mother had told me last week that the goals for her daughter were to 1) learn to play with other children 2) not be so bossy with everyone. This morning, the mother was sitting off to the side and asking her daughter questions about each toy or telling her daughter where to put each toy. Her tone was socially appropriate for a mother but would sound very bossy if her daughter imitated the tone with another child. Her daughter, although reluctantly compliant with the activity was not learning to play because what they were doing together was not playful. I knew, as I watched, that I will be gently asking this mom to rethink her role as parent, at least in regard to play and get on the floor and show her daughter how to play, how to be cooperative, how to share control--all the things she wants her daughter to learn. She has been telling her daughter long enough, now it is time for her to teach her daughter. Wish me luck. This is always a hard sell.

Continuing Education for Parents of Children with Autism

Listen to Autism Podcast for great continuing education on Autism Spectrum Disorders.

Parents ought to get a comprehensive manual on the day that any child is born, right? But then, how many would read the manual? I have not read the manual that came with our digital camera, our food processor, our ridiculously complicated alarm clock...

But I did read a great deal before and after my first child was born and luckily, books on parenting and child development are not boring to me like electronic device manuals. My husband did not read any books before our first child was born, nor has he read any on the topic over the 32 intervening years. He does read the manual on stuff like our alarm clock, which is good because I would have thrown that clock out in righteous indignation on the theory that an alarm clock should operate in an intuitively obvious manner. The way I learned to operate the alarm clock was, I let him show me how to use it while maintaining a huffy resentful manner throughout the lesson. My point here is that people are different in what they are willing to learn and how they are willing to learn it.

Some parents are pretty indignant that they have to learn so much to raise a child with ASD--and I don't blame them. Nobody imagines, when they decide to have a baby, that they might need to learn complicated stuff about neurology, communication, social development, sensory systems, intervention methodologies, school systems, insurance policies.... But there is no way around it, so far as I can see. Not much is intuitive about raising a child with ASD and not much goes really well without learning a lot of stuff. You need college level information on at least a dozen topics!

Here is one bit of good news; I have found that most parents become very intrigued with the surprising discoveries and unexpected informational twists and turns that are found on a journey of learning about ASD. Once you get started, learning about autism can become addictive, it is so interesting.

Here is another bit of good news and the point of this post; there are a variety of ways to learn the information that you need to know. Autism Podcast is a good way if you need to combine learning with making dinner or doing laundry (and who doesn't). Found at autismpodcast.org, these discussions are cohosted by a father, Michael Boil, who is doing exactly what anyone who loves a youngster with autism needs to do, learning about autism, but doing it publically in a podcast where he interviews lots of the great teachers and thinkers and researchers and movers and shakers in the world of Autism Spectrum Disorders. The other host is Nicole Sparapani, MA a Speech & Language Pathologist. She brings a very real world practicing therapist perspective to the podcasts. I feel particularly happy when I listen to her--no doubt because she is in my field and at the unsung clinical end of the field. I wash up my dishes as she asks questions and explains concepts and I think to myself "You Go Girl!"