“Challenging behaviors toolkit” from Autism Speaks

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Despite our struggles with it, Behavior Management is a very useful tool for motivating autistic children. We struggled with it for two reasons:

  1. Rob had so many challenging behaviors we were often overwhelmed

  2. We (mainly my husband and extended family and friends) struggled with the perception that behavior management is not “real” discipline

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Some of the more challenging behaviors we struggled with over the years:

  • aggression
  • destruction
  • wandering, especially in the middle of the night
  • fire-setting
  • obsession with throwing things and dumping liquids
  • obsession with knives and scissors and cutting anything he could get his hand on (we called him Rob scissor-hands)
  • obsession with electrical cords and outlets
  • trying to jump out of moving vehicles, or running into traffic
  • picking his own skin continually
  • refusal to eat or very picky eating
  • insistence on very rigid routines and tantrums if they were broken
  • pica
  • general non-compliance, especially in self-care
  • sleep issues
  • tantrums and verbal threats
  • constant annoying behavior (poking, prodding, pinching, grabbing, obstruction)
  • stealing

Despite all these behaviors, Rob was considered too “high-functioning” by DDD to provide much in the way of habilitation services. Given the number of very challenging behaviors, respite care was also very hard to find. There was no suitable facility for residential treatment.  We had to find our own way for many, many years. We discovered that it was best to focus on the two or three most pressing behaviors at any one time, and ignore the rest as much as possible.  Once those behaviors were more under control, then we could concentrate on others. Rob needed a constant schedule, very strict vigilance, and absolute consistency in a behavior program. We struggled to provide all these in our home.  We couldn’t child-proof the house enough or keep him safe enough. We couldn’t be vigilant enough. The structure of a school setting helped him, fortunately, so we had a little break during the day.

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Many of Rob’s behaviors were obsessive. Medication for obsessive behavior helped. So did providing safe outlets for obsessive behavior, to reduce anxiety. For example, Rob was obsessed with fire, and would start fires in his room or outside, or in the sink, whenever he could get matches or a lighter. We did not keep those things in our home, but Rob managed to find them on the ground often enough.  Once he discovered that he could light paper towels at the stove or the toster oven, there was no stopping him.  Fortunately, he seemed to rotate obsessions; he would be playing with fire for a few weeks, then switch to cutting things obsessively.  Of course, we had smoke detectors in every room of the house. What finally helped was that we told him that whenever he felt a need to play with fire, that he could light a fire (or a candle) in the fireplace, with one of us with him.  The rules were that he could ask anytime, and we would allow him – but only in that safe spot, and only with one of us with him. The knowledge that he could light a fire whenever he wanted to, and be safe, reduced the obsession. This also helped with cutting things and throwing things. We provided him safe places and ways to indulge his obsessions. But he needed to know that he could do those things anytime he wanted, with supervision. At first that was inconvenient, of course; but after a couple of weeks, his need to do those things lessened considerably.

It is a typical schoolday morning at our house. Rob is refusing to leave the house to go to school. Getting him dressed, fed, and ready to go is a battle. Getting him to go to the car and get in (or go out to the bus) is impossible. When he was little, he could be carried by force, but now that he is in third grade, he is too strong for me.  Some days he goes without a problem; other days it is a battle; and  we haven’t been able to figure out what makes the difference. As far as I can tell, he just doesn’t feel like going.

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According to my previous posts, we should have already taken into account sensory issues, comprehension issues, communication issues.  We are addressing his sensory needs on a regular basis, we are sure he understands what is expected (“we go to school every day, whether we feel like it or not”), and we think we are giving him the opportunity to communicate his needs and desires. Clearly he does not want to go. This could be due to a variety of factors. He may be anxious. He is probably tired because he didn’t sleep well (sleep issues are a constant problem).

Some things we do to make sure he understands what is expected:

  1. We keep a calendar that shows him which days are school days and which are holidays or weekends.
  2. We try to keep a regular routine, and  checklist of what he is expected to do each morning.
  3. We narrate the process.
  4. We try not to get frustrated, because that makes him more resistant.

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But despite all these things, there are days when he does not want to go. And he does not have the positive things at school that might motivate him. He does not have friends. He is not interested in most of the class activities. He doesn’t care about grades. I can understand why he would not want to go.

So we try to provide extra motivation, using what we call the carrot-and-stick approach:

  • carrot: give him a reward for doing what he is asked to do
  • stick: make non-compliance less desirable in some way

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This, of course, is basic behavior management. We tried different behavioral approaches over the years. Most were successful to some extent, but then would break down, either because he outgrew them, or because we just were not organized enough.  When he was preschool age, we used a token system (poker chips). If he did something we asked him to do, we put a chip in his bucket. We did not take chips out for non-compliance. At the end of the day he could trade his chips in for something he wanted: TV time, McDonald’s french fries, Pokemon cards. That was the easiest system for us. It was simple, concrete, and visual. We went back to this several times over the years.

In first grade, his teacher used a traffic-light feedback system. There were specific rules, and the lights showed how the child was doing. We found that it worked at home as well.  We made up a system of specific rules: Do not hit or pinch. Ask for what you want. Do what you are told. Green light meant that he was complying. He had all his privileges: he could watch TV, play video games, play Pokemon. Yellow light meant that he had a warning. He had broken one of the rules, once. Red light meant that he was breaking more than one rule , or a rule multiple times. Red light status meant he could not watch TV, play video games, or play with his Pokemon cards. Red light status lasted for an hour, and then he could try again to move to green.

As he got older and we required more complex behaviors for him, the behavior plans got more complicated. We used checklists and point systems. However, these tended to break down because we weren’t good at maintaining them. We found complex behavior management systems to be exhausting and frustrating. My husband struggled with resentment because he felt that Rob should behave just because he was told to.  We worried that we were raising a child that would not do anything unless he were rewarded for doing so. Our daughter felt resentment because we spent so much time and effort on his behavior, yet expected so much more from her.  And we often got into power struggles with Rob.  He was smart and tried to cheat or manipulate the system.

We struggled along on our own pretty much until Rob hit sixth grade. Then it seemed that nothing we did helped. He was aggressive, destructive, defiant, and nothing we did worked. We eventually had to send him to a residential treatment for five months. During that time, they got his behavior under control and worked with us to develop a behavior management system that we could sustain. We worked with a behavioral management specialist, and met with them monthly to assess progress and adjust the plan. That helped for a few years, until he hit puberty (more on that in a future post).

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We felt like failures for having to send him to a residential program. We did family counseling, and there were times when I felt intense shame over my inability to be consistent with a behavior program. I found that issues I had with my growing-up years got in the way of my being effective. I grew up in an physically and emotionally abusive home, and so I was extremely uncomfortable with any expressions of anger.  My husband grew up in a military family where the rule was instant, unquestioning obedience, and he still felt a great deal of anger and frustration that we could not get Rob to comply. He would lose his temper and yell at Rob, and then I would get upset, and we would argue. Although I’m sure this upset Rob, on another level he liked having the power to make us argue, and played us off each other. The counseling helped us become aware of some of these patterns, and make adjustments.

I wish I could tell you that we discovered a magic bullet. We did not. As he got older, money became the chief motivator. We used a points system which he could exchange for money at the end of the week. We focused on only a few behaviors at a time, because a comprehensive system was just too overwhelming for us.

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Raising an autistic child is hard. I learned I should not be ashamed of being inadequate. I learned that we had to have help. So I recommend family counseling for every family with a special needs child. I recommend getting on-going help from an expert in behavior management.  And all I can say is to not give up. We tried, we worked really hard. We failed a lot. We got up and tried again. Now that Rob is eighteen, he is doing so much better than we ever hoped.  Our failures did not doom him to failure. Our hard work was not in vain. Neither will yours be, if you persevere.

MSNBC carried this story yesterday with the subheading: “Recent cases of public disruption reveal complexities to being considerate.” But the article raises a much more fundamental issue than public civility.

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Any parent of an autistic child knows that the question “how will my child behave in public?” is a daily anxiety. How to balance the needs of public civility/safety with the need of your child for socialization? Not to mention your own need to have a life?  Especially if your child has outbursts or can be aggressive, this is a very, very tricky and often distressing issue, and the emotions surrounding it can lead to extreme reactions.  If you do not have an autistic child, you can not understand the agony this issue causes parents. In my experience, public reaction to my child (and the accompanying judgmental attitude) is a daily wounding that eventually leads to either anger, despair, or resignation (and sometimes cycling through those three emotions in the course of a few minutes). This is an issue that I can’t discuss in a coherent fashion, so I’m going to go with a stream-of-consciousness approach here.

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The article discusses a recent, controversial case in which a church barred an autistic family from its doors. In my experience (I am on a very large listserv for autistic parents) this happens frequently.  This happened to us as well – a wounding that caused us much pain and bitterness at the time, and that I have struggled to forgive (even though it happened 8 years ago). Unfortunately, church-goers can often be the least tolerant of child misbehavior (especially because, according to the Bible, the ability to keep your household under control is a criterion for leadership; failure to do so means that you are not a competent parent and therefore not suited for church leadership. This causes a lot of shame – but that is another post). I was the worship leader at this church; every week I was pouring out my heart and soul to lead the worship team (voluntarily, I might add – no pay) and I invested myself deeply in the church.  My husband was playing bass in the worship band. On Sunday mornings, we were there for both services, which meant that Rob was in Sunday school twice.  Rob could be disruptive in class; sometimes aggressive, but more often just verbal disruption, or refusing to participate in some of the class activities. I found that his success greatly depended upon the attitude of the teacher. We were fortunate that for about a year, there were 2 couples that were deeply invested in making sure Rob had the attention he needed to make Sunday School a success. But those couples moved, and no one rose up to take their place. Rob began to flounder, and act out in class.  My husband quit the band to take care of him; but at that time my husband was not dealing well with Rob himself, and there was a lot of friction at home. Sunday mornings became a source of extreme anxiety. The pastor began to get complaints from other members about Rob’s behavior. To do him credit, he tried for quite a while to fend them off, but eventually decided that the needs of the many outweighed the needs of the few. So he told me, rather abruptly after service one day, that Rob was no longer welcome at our church.

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I was devastated. In retrospect, I realize that our church was small, and not every church is willing or able to minister to disabled persons. That takes a lot of time, energy, and commitment, which is often beyond what volunteers are able to do; and the church did not have the budget to hire professional staff. We really did not have the option to leave him at home. Respite care was extremely hard to find, and none of the extended family would watch him. So either he came with us, or we did not go. I left off worship leading, and my husband and I alternated taking Rob to church. But more and more often we simply stayed home. It was too painful.

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What, you ask, did we expect? What would have ministered to us? Here is the cry of my heart (one that I suspect is echoed by many other parents of an autistic child): Listen, church, to the cries of a member of the body that is hurting:

Love us. All of us. Love our child, for Jesus’ sake. We are isolated, exhausted, frightened, discouraged, overwhelmed, and often on the verge of despair. Our marriage is struggling. We are in financial straits because of the many treatments that our insurance does not cover. There is friction with the extended family.  Our constant concern, morning, noon and night, is the welfare of our child.  We feel guilty or ashamed of our incapacity. We worry that we are neglecting our other children. We fear for his future.  We are struggling to hold onto hope. And for sure, we struggle to find God in all of this.  On a Sunday morning, for a few hours, is it too much to ask to have someone else lift that burden? So we can fellowship, worship, and find new strength for the following week?

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We eventually left that church. The church we are at now is much more accepting. I knew we had found the right place when I walked in on a Sunday morning, and there at the back was an autistic boy, sitting at a table with headphones and a portable DVD player, rocking and humming – and no one minded!  This church is even smaller than the one we left, but there is this difference: in this church, everyone looks out for each other.  If a toddler is crying, someone else will come up to the harried mother and take the child to try to distract and calm him, so the mom can continue to worship. If one of the autistic children wanders outside into the courtyard, someone is sure to follow him to keep an eye on him, so the parents can continue to worship. In this church, we bear one another’s burdens. And that has brought renewed hope to our family.

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Ironically,  Rob still wants to go back to our former church, because he knows so many of the kids. Since his behavior is so much improved, we take him on occasion, but we don’t go there ourselves. He is welcome so long as he is not disruptive. But we never told him that he was once barred from attending. Why put a stumbling block in his way?

WHAT do communication issues have to do with discipline?  Because of specific cognitive deficits, even high-functioning or AS kids may not see words or gestures as the natural way to communicate. In our experience, many of Rob’s acting-out behaviors were actually attempts to communicate. Helping him communicate in more socially-appropriate ways became a major goal.

Disclaimer: I am not a communication specialist. Again, I can only speak to our experience with Rob, and to the things we tried that seemed to help. Each autistic/AS child is different. But according to what I have seen and read, some of these strategies may be helpful for children with a range of communication issues.

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Some basic principles to take into account:

  1. Because of “theory of mind issues” (see previous posts), autistic children may not realize they need to communicate: they may assume you already know what they want.
  2. Some autistic children think in images rather than words, and so words are not their natural way of processing information.
  3. Even if your child has a normal vocabulary and expressive language, when he is cognitively or emotionally stressed, his expressive language ability may degrade. Giving him alternative ways to communicate under stress may help.
  4. Unprovoked aggression or annoying behavior may actually be a form of social approach.

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Rob did not speak until he was 24 months. He did not babble much, but it was obvious that he heard and understood what we said to him. He did not point at things he wanted, but he did lead us to what he wanted (or more often, just got it himself, even if it meant climbing up to the top shelf in our kitchen cupboards that went all the way up to the 12-foot ceilings).  Especially odd to us was that, although he did not speak or babble,  when I read to him, he knew and would make the animal sounds in his books. I would point to a cat and say, how does the kitty go? And Rob would say meow.  How does the cow go? Moo.   How do you explain a toddler that could bark, meow, moo, screech,  neigh, oink, growl and roar – but had never said Mama , Dada,  bye-bye, or any other recognizable word?

I worried, but at that point, his speech was the least of our concerns (see previous posts about his incredible hyperactivity and destructiveness).  Our pediatrician said that he was still in the “normal” range until he turned two. And after all, my twin brother didn’t speak until he was three – and he was a genius. And my mother had described similar behavior from him in terms of grunting and hand-leading to indicate what he wanted. I later realized that my twin brother is high-functioning autistic, but when I was growing up there was no such diagnosis: we always just attributed his strange behavior to his brilliance or to laziness.

When Rob did begin to speak, it came all at once. At 23 months, he had no words, but by his second birthday a month later, he had the typical number of words and was using 2-3 word sentences.  LIke most AS kids, his speech was not conventional. His first word was “yellow” (his favorite color). He did not say Mama or Dada, but he did try to say his sister’s name.  He did not reverse pronouns or refer to himself in the third person like many autistic children do.  His speech was mainly functional, but he also repeated phrases over and over, especially ones he heard on TV or the radio. But even though he developed an extensive vocabulary, and could carry on a conversation, he did not tend to use language in a given situation until we prompted him to “use his words.” This continued long into his childhood, and we still need to remind him at times even as an adult.

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Instead of words, Rob often used actions. If he wanted something, he got it himself, or grabbed it from someone else. If he wanted to play, or wanted attention, he would hit, or pinch, or throw something at you.  One of his annoying habits was to come up to me (or his dad or sister) while we were reading or doing something else, and poke, pinch, hit or grab us.  Before he was diagnosed, we regarded this as a discipline problem, and we ended up spanking him or giving him time out, which never helped the situation, or changed his behavior.  But after he was diagnosed, and I started reading about autism, it occurred to me one day that maybe he wanted something.  So when he kept poking his sister and she was whining at him to stop, I asked him, Rob, is there something you want? He smiled and climbed up next to his sister and put her arm around him. He wanted to cuddle, and he showed it by pinching or hitting her! After that, whenever he began to hit or pinch, or poke one of us, instead of disciplining him for the aggression, we started asking him, Rob, is there something you want? Use your words. And if he then asked for what he wanted, we rewarded him (and ignored the previous aggression). After a few weeks Rob was talking more, and using less aggression to initiate social interactions.

From this experience, I started to realize that Rob needed to be reminded that we did not know what he wanted unless he told us. I suspect that he used aggression as a social approach because he felt that we already knew what he wanted, and we were ignoring him, so he would hit or pinch or grab.

If Rob was agitated, upset or frustrated, his ability to use words was noticeably lessened. This often led to tantrums because he couldn’t make himself understood. His first-grade teacher had started to teach Rob sign language. and we noticed he could sign even when he couldn’t speak. We could ask him questions and he would sign yes or no, to help us understand what was bothering him. We also used picture systems, so he could point to what he wanted, or give us a token that showed how he felt.

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By taking into account his sensory issues, comprehension issues, and communication issues, we were able, over time, to encourage Rob to act in more socially appropriate ways. But there were times when Rob just wasn’t motivated to comply. Like any other kid, he just wanted his own way. Motivating autistic children to want to behave will be the subject of the next post in this series.

Next: motivation issues

Rob had many obsessions when he was little – many were destructive, and some were dangerous: throwing things through windows, making “spiderwebs” with string, tying knots in rope, getting knives from the kitchen and hiding them in his closet so he could “look” at them, picking at the electrical outlets. But his most annoying obsession was his insistence upon dumping out the contents of any uncovered drink, and throwing it on me if I was nearby. He did that for 3 years – from age 2 until age 5, until the incident I am about to relate. This particular incident happened when he was five, before we had a diagnosis or knew what we were dealing with. But I think it is instructive about the types of discipline that work with autistic children.

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I have no idea where Rob got the idea that cups needed to be empty if they were uncovered.  He had many such apparently meaningless “rules.” At home, we all learned to drink from sippy cups or plastic lidded cups.  If by chance we forgot to do so, and he saw an uncovered cup, he would dump it upside down. This was inconvenient at home, but downright embarrassing in public.  My MIL insisted on taking us to lunch at a restaurant. I warned her about the dumping, but she didn’t listen – she was still under the impression that the problem was my not disciplining him enough.  She requested a glass of water. Rob went for it immediately.  She caught his hands and told him no – so he darted to the neighboring table and dumped out one of their water glasses on the floor.  My MIL was mortified and I was angry – so I took Rob and left the restaurant. I spanked him outside before we left – but spanking did not deter this behavior. The next time he had the opportunity, he would do it again.

Thank goodness for McDonalds’, where all the drinks were covered!! But even then he would occasionally see someone with an uncovered drink. He had a radar for them. I remember walking into McDonald’s once, and out onto the play place area. I was holding Rob’s hand tightly, scanning the room for any unsuspecting patron with an uncovered drink. But he jerked his hand from mine, darted to a table quick as a flash and dumped a lady’s uncovered drink on the floor.  She looked at me (understandably) as if I were the worst mother in the world. I apologized, explained he was autistic (she didn’t look as if she believed me), and offered to replace her drink. Thank goodness for free refills!

Fortunately, he didn’t throw liquids on anyone else. Just me. In my face. Every time he got the chance. In  public, I learned to not have a cup anywhere near me (or near him); but at home I would forget, or his sister would forget and leave a cup uncovered. His favorite time to throw drinks on me was while we were brushing teeth – mine, his, or his older sister’s. We used a small cup for rinsing, and if I got distracted and put it down for a second, Rob would grab it and throw the water in my face (sometimes he would even grab it out of my hand right after I filled it). The same happened whenever I forgot and left the lid off a cup, or took the lid off my iced tea to add sweetener. It was amazing how fast he was. It only took a nano-second for him to grab the drink and throw it on me. Fortunately he never did this with hot drinks, just cold. But this happened daily, sometimes 2 or 3 times a day, repeatedly, for 3 years!

What didn’t work: I tried spanking him, talking to him, giving him time outs, yelling at him, ignoring him (although ignoring having water thrown on me was hard -I couldn’t help but flinch or make a face). Nothing deterred him. He would throw the drink on me, and then run away laughing, doing his on-his-toes happy dance.

One day it happened one too many times. I was brushing his teeth, and I had filled the cup, when he grabbed it from my hand and threw it on me.  He danced off, laughing, to his room. I had had enough! I filled the cup with cold water, marched into his room, and threw the cup of water in his face.  He screamed (he hated his clothes being wet). When he screamed from shock and anger, I yelled at him – That’s what it feels like to me too, and I don’t like it either! He stared at me for a moment – and I saw comprehension dawn in his face.  Then, I’ll never forget what he said: Oh Mommy, I didn’t know it felt like that for you. I’m sorry, and I’ll never do it again!.

And he never did – to me or anyone else.

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This was one of the many times in my life where I got a glimpse of the “real” Rob – I thought – he’s in there! He does have a conscience – it’s just really hard to get to. I’m not proud I lost my temper. But I learned a valuable lesson that day about understanding Rob, that helped me later on after his diagnosis with autism: He was not being mean. He thought my reaction was funny. When he was able to understand how it made me feel, he felt remorse and sympathy.

P.S. I still have no clue why he did this – how he got the idea, or why he was so focused on it. One thought is that we gave him nesting cups to play with in the bathtub (although not after he started this). If anyone has any experience like this and can shed some insight, let me know.

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A note about Behavior Modification: I am not recommending my approach in this situation to anyone. But I think it demonstrates that immediate, natural consequences for behavior are effective with autistic children; the question is, what does an autistic child consider “natural consequences”?  At that point we were using some elementary forms of behavior mod with Rob.  I knew about extinguishing bad behavior by ignoring it, and I knew about reinforcing positive behavior; but I didn’t know about shaping his behavior through approximate steps, so it didn’t make sense to me to reward him for the times he didn’t throw water on me.  At the time it seemed wrong to reward him for NOT behaving badly – I was afraid it would remind him to act out more often. There are plenty of sites about how to use behavior modification, so I won’t go into it here. But we did move increasingly to a behavior modification approach as he got older, and as we got wiser.

Why Does Chris Do That? Some Suggestions Regarding the Cause and Management of the Unusual Behavior of Children and Adults with Autism and Asperger Syndrome: REVISED 2003 (Paperback)

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I just saw this on Amazon.com. Although I have not read it, I have read other things by Dr. Tony Attwood, and he is an excellent source for up-to-date, practical information and therapies about Asperger’s Syndrome.