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Coping With Difficult Child-Behavior: Tips for Parents of Children on the Spectrum

"My child’s behavior is often very difficult to understand. And since I don’t really understand a lot of his behavior, it makes it difficult to think of an intervention to change it. Why does he over-react to certain things (e.g., flipping into an intense temper tantrum when asked to put his Legos away -- even when I ask him nicely), and what can I do to help?"

There is a range of reasons why kids with Aspergers and High-Functioning Autism have difficulties with behavior. The world can be a confusing, isolating and daunting place for your youngster, and it is his fundamental difficulties with communication and social interaction that are often the root cause of difficult behavior. There are some other possible reasons, too.

It's important to say that your youngster's behavior is not caused by bad parenting – and is not your fault. It may seem as though your youngster's difficult behavior is only directed at you - especially if it tends to happen at home, not at school. You are not the only parent in this situation, although sometimes it can feel that way.



Reasons for behavior:

1. Bullying— Unfortunately, kids with Aspergers and High-Functioning Autism can be at more risk of being bullied than their peers. If you notice a sudden change in your youngster’s behavior, see if there has been any reported bullying or teasing in school. Your youngster may find it difficult to tell you if they have been bullied (not all kids with High-Functioning Autism even recognize what bullying is) so you might need to play detective.

2. Change— Children with Aspergers and High-Functioning Autism can find it difficult to cope with change, whether a temporary change to their timetable at school, or a more permanent change such as moving house. You may find that your youngster's behavior alters at times of change, but settles as he/she becomes used to a new environment or routine.

3. Communication— Kids with High-Functioning Autism can experience a number of difficulties with communication: (a) understanding what's being said to them (i.e., receptive language), (b) understanding non-verbal communication (e.g., facial expressions, body language), and (c) communicating with others (i.e., expressive language). Because of these difficulties, ASD kids can find it hard to communicate their needs or to understand what other people are saying to them, or asking them to do. This can cause considerable frustration and anxiety which, if it can't be expressed any other way, may result in challenging behavior.

4. Medical reasons— If your youngster's behavior suddenly changes for the worse, check that there isn't a medical reason for the distress. Kids can find it difficult to tell parents how they're feeling or where something hurts, even if their verbal communication is generally good. Some kids have seizures that can cause irritability and confusion, or gastrointestinal problems which may be painful. Parents can try using a pain chart to help the youngster indicate where he/she is feeling discomfort. Alternatively, some moms and dads use symbols to help their youngster indicate where the pain is.

5. Sensory processing difficulties— Many kids with ASD have difficulties processing sensory information. For example, kids may not be able to manage some tastes or food textures, or find that someone touching them - even lightly - is painful. Certain smells, lights or sounds can be distressing. Some kids may find it difficult to block-out background noise and what they experience as excessive visual information. Instead, sounds, lights and other sights are all processed at the same level of intensity and lead to sensory overload. You may find that your youngster starts a repetitive behavior in stressful environments (e.g., hand-flapping, spinning) to try and block-out external sensory information. Children with Aspergers and High-Functioning Autism can be very sensitive to subtle changes in their environment. If there's a sudden change in behavior, think about whether there has been a recent change in the environment.

6. Social situations— Communication difficulties can impact on how these kids deal with social situations. They may find social situations very demanding or stressful because they have to work hard to communicate with other people. Not all kids with High-Functioning Autism will understand that other people hold different views from theirs. This may also make social situations difficult. Kids with Aspergers and High-Functioning Autism may not understand 'social rules' (i.e., unwritten rules that govern social situations), such as how close to stand to other people or how to take a turn in conversation. This is especially true if kids find themselves in a new, unfamiliar situation. Therefore, social situations can be daunting and unpredictable. Some kids may engage in a particular behavior to try and avoid social contact.

7. Unstructured time— Kids with Aspergers and High-Functioning Autism can find 'sequencing' difficult (i.e., putting what is going to happen in a day in a logical order in their mind). Many kids have timetables so they can see what is going to happen, when, and plan for it. However, unstructured time (e.g., break times at school), which can be noisy and chaotic, may be difficult to deal with. This is because it's difficult for kids to predict what will happen and how they are expected to behave. You may find that behavioral difficulties occur more in transition times between lessons or activities. Abstract concepts such as time aren't easy to understand, and kids with Aspergers and High-Functioning Autism may find it hard to wait. It helps if you can be clear about why and for how long you are waiting (e.g., “We have to wait for five minutes, until 10.30. This is because the doctor can see us at 10.30.”).

Your child behaves the way he does for a particular reason...

In other words, he is trying to accomplish something (or avoid something). Here are two questions to ask yourself when looking at a particular aspect of your youngster's behavior:
  • What is the function of this behavior?
  • What is my youngster trying to tell me by his behavior?

Think of your child’s behavior as an iceberg. The behavior you are actually seeing is the tip of the iceberg, but there's a lot more going on under the surface. Children with Aspergers and High-Functioning Autism can't always express their feelings through facial expressions, body language or speech. Instead, they may be expressed through other behaviors. Your youngster might be trying to tell you she is tired, stressed, annoyed by something that happened earlier, or in need of some time alone.

It can be useful to use a behavior diary to try and find out what triggers a particular behavior. This helps you to monitor the behavior over time and see what the possible causes are (e.g., if always happens at the end of the day when your youngster is tired after school). One way of recording behavior is an ABC chart. On this, you record the Antecedent (i.e., what happened beforehand, who was there, where your youngster was), the Behavior itself, and the Consequence (i.e., what happened following the behavior). By identifying potential triggers for the behavior, it can be easier to come up with ways of preventing it from happening in the future. Interventions are more likely to be successful if they address either the cause or the function of the behavior.

When trying to tackle behavioral difficulties, select at the most two behaviors to focus on at a time. Using too many new strategies with your youngster at once may result in none of them working. You could write down all the behaviors you're concerned about then prioritize them, choosing the two most important ones to concentrate on first. Don't worry if things get worse before they get better. Your youngster might at first resist change. This is a normal reaction when kids want things to stay the same and try hard to see that they do. It's important to continue with the strategies you are using and be consistent.


Ways to deal with behavior problems:

1. Be patient. Your youngster's behavior generally won't change overnight. You may find it useful to track your youngster's behavior in a diary; then it may be easier to notice small, positive changes.

2. Check that skills have not been forgotten. If you have used strategies successfully in the past, it might help to revisit them from time to time so that your youngster remembers how to use them. You may also need to use them at periods of stress, illness or change when old behaviors can return. Visual supports can help with this.

3. Consistency is of the utmost importance. Whatever strategies you decide to use to help your youngster should be used by everyone involved with him, including other family members, teachers, babysitters, etc. Inconsistent reactions to behavior by different adults can cause confusion, stress and frustration for a child with Aspergers and High-Functioning Autism, and can make the behavior more difficult to tackle.

4. Exercise can help to relieve stress and frustration. Some studies have shown that regular exercise throughout the day can have a positive effect on general behavior. Many kids with High-Functioning Autism enjoy exercise like jumping on a trampoline.

5. Give praise where praise is due. As your youngster learns a new skill or coping strategy, give him/her as much praise as possible. Some kids like verbal praise. Others might prefer to get another kind of reward, like sticker on a star chart, or five minutes with their favorite activity or DVD. Try to give your youngster praise in a way that is meaningful. Try also to offer praise immediately after your youngster has demonstrated a skill. Your youngster will hopefully learn to make an association between the skill and the reward and start to use the skill more often.

6. Learn to identify emotions. Many children with High-Functioning Autism find it difficult not only to understand how others are feeling, but also how they feel themselves. Emotions are abstract concepts, and we need a degree of imagination to understand them (we can't simply 'see' anger, for example). There are ways to turn emotions into more 'concrete' concepts, though. For example, stress scales are a good way of helping kids with ASD to identify how they're feeling. You can use a traffic light system, visual thermometer, or a scale of 1-5 to present emotions as colors or numbers. For example, a green traffic light or a number 1 can mean 'I am calm' …a red traffic light or a number 5 can mean 'I am angry'. You need to help your youngster understand what 'angry' means. One way to do this is to refer to physical changes in the body (e.g., “When I'm angry, my tummy hurts/my face gets red/I want to cry”). When your youngster has begun to understand the extremes of angry and calm, you can start helping him/her to understand the feelings in between. If your youngster sees that he is getting angry, he can try to do something to calm himself down, or he can remove himself from the situation. Alternatively, other adults can see what is happening and take action.

7. Learn to relax. It can be very difficult for kids with High-Functioning Autism to relax. Some have a particular interest or activity they like to do because it helps them to relax. It is, of course, worth being aware of these. Can time doing their favorite activity be built into their daily routine? However, special interests or activities can sometimes be the cause of behavioral difficulties if a youngster can't do them when he wants to. Other ways to relax include having time alone for short periods of the day to unwind, playing soothing music, or using homeopathic remedies. Some children may find lights soothing, especially things like spinning lights or bubble tubes which are repetitive.

8. Modify the environment. Kids with High-Functioning Autism can have difficulties processing sensory information. Some things in their environment can act as severe irritants. If this is the case, it can be easier to remove the thing that might be irritating your youngster rather than trying to change a behavior pattern. Flickering fluorescent lights, humming noises, certain smells, etc., may be causing distress. It may be something you have hardly noticed at all, while your youngster experiences it much more intensely.

9. Children with ASD can find it difficult to transfer or generalize new skills they've learned from one situation to another. Encourage your youngster to use new skills or coping strategies in different situations (e.g., at school as well as at home).

10. Punishment for ASD-related symptoms (versus true misbehavior) rarely works, because many of these kids  don't understand the connection between their behavior and a punishment they have received. Also, punishment won't explain what you want from your youngster or help to teach him any new skills.

11. Speak clearly and precisely. Some behavioral difficulties arise from kids’ frustration at not being able to communicate what they want. Some kids with High-Functioning Autism have a good grasp of language and speak quite fluently. However, they may struggle to tell you something when they are anxious or upset, or find it difficult to understand what you are saying to them. As a general rule, use short sentences, with your youngster's name at the beginning so that they know you're speaking to them. If you use short, clear sentences, your youngster won’t have to try to filter-out the less important information. If your youngster finds spoken communication difficult, consider using alternative ways of communicating (e.g., visual supports).

12. 'Time-outs' are a way for your youngster to calm down, especially if environmental factors are causing distress. Whatever location your youngster goes to should be a calm, safe environment where she can be observed. This should only last a few minutes, and your youngster should then be directed to an activity she finds relaxing. Some kids have time-out at home, perhaps time alone in their bedroom, or the chance to do a favorite activity.

13. Use visual supports. Children with Aspergers and High-Functioning Autism often find it easier to process visual information. Some kids use picture symbols or photos to communicate what they want, while others use sign language. Using a visual timetable can make it easier for a youngster to understand what's going to happen throughout the day. It also gives a sense of routine, which kids with Aspergers and High-Functioning Autism usually like, and removes feelings of uncertainty.

14. When tackling any behavior, be realistic and set achievable goals. You don't want to cause yourself more frustration by feeling you've failed to meet unachievable goals.

15. Write a social story. Social stories are short descriptions of situations, events or activities, often with pictures, which include information about what to expect in that situation and why. They can give a youngster with Aspergers and High-Functioning Autism some idea of how others might behave, and therefore be a guide for appropriate behavior.


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Single-Parenting Children With Aspergers/High-Functioning Autism

One of the most difficult roles a mother or father will ever assume is that of the single parent. It doesn't matter how you arrived at that point – divorced, widowed, or single by choice – it is a daily challenge. When a mother or father is a single parent and there is a youngster with Aspergers or High-Functioning Autism (HFA) to care for, the challenges can make life feel like a true test of endurance, but it can be done. It does take more effort and organization, however.

Although raising children always has challenges, single parenting a child with Aspergers or HFA can be extremely stressful – as well as rewarding. Finding solutions to most of the problems is the first step toward keeping the parent from feeling overwhelmed. Almost every problem has a solution. The real trick to success as a single parent is not losing yourself in the parenting process. There are some issues that every single parent needs to be aware. Working on the solutions before they become problems can greatly reduce parental stress.

Tips for single parents with Aspergers and HFA children:

1. Arm yourself with information. Read everything you can about your youngster’s disorder. Most libraries have a parenting section with books on raising kids with special needs. The Internet also offers a broad spectrum of information on nearly every type of disorder. Websites, chat rooms, and the like are tremendous sources of information about conditions, treatments, and medications that are up-to-the-minute. Also, many of the websites that focus on childhood disorders will mail information to parents for free or for a very nominal charge. Be sure to consult your youngster’s doctor regarding the information you find. Being informed is the best offense in managing the daily and long-term challenges of parenting a youngster with Aspergers. Know what you need and pursue it.

2. Avoid being competitive with your ex. It won’t get you anywhere. You may not be able to compete with taking the children to Disney World. But children don’t necessarily love the one who gives the bigger presents more.

3. Be your youngster’s best advocate. No one can - or will ever - care more about a youngster and his/her well-being than the parent(s). As such, it is squarely on the parents’ shoulders to fight for the best information, treatment, doctors, and options that exist. Familiarize yourself with the law. Every parent has to be his/her own researcher.

4. Consider a pet. If you don’t have one, think of getting one. It takes the focus away and puts it on something else. Animals spread love around.

5. Control your reactions. Your Aspergers youngster may push your buttons, but giving big reactions to bad behavior may send the wrong message. Showing that you can control your feelings and avoid meltdowns yourself models appropriate behavior for your Aspie, and leaves you feeling better, too.

6. Don’t block your feelings. Recognize that ALL your feelings are normal. Be sad. Be mad. It’s only natural.

7. Don’t play the blame game. Your youngster’s disorder is not your fault, nor is your spouse to blame. It does no good to look for someone to focus your anger on. Pointing your finger at your spouse or his medical or family history is not productive and can be extremely hurtful. You will need to lean on one another for support, and blame can only damage your relationship.

8. Everyone needs a social life, and a single parent of a youngster with Aspergers is no exception. In addition to caring for your son or daughter, you may be working full time, meeting the needs of your other kids, and taking care of the home, which leaves you little free time. You may have other obligations, too (e.g., school, church, community activities, etc.). Fatigue takes on a new meaning, and having social interaction outside the home is so far on the back-burner it is hard to remember what it was like to “have a life.” Nonetheless, it is important to carve-out some time in your schedule for fun social activities (e.g., hiking, biking, dancing, card games, movies, eating out, etc.). The key is having fun interaction with other adults. Grown-ups who do not spend time with their “buddies” begin to resent their schedule, their lives, and possibly their kids. It is normal to feel that way, and the best way to avoid the problem is to schedule time to socialize.

9. Find some kind of support group. If you can’t find it in your community, you can find one online. You have to make a concerted effort to start to build your new family based on reciprocity and support. It can also help to start building self-esteem. You realize you are not the only one.

10. Focus on personal growth. So much of being a parent takes an emotional and physical toll on you that you have to get out and do something for yourself on an ongoing basis. Try an activity that you never did or go back to something you gave up in your marriage (e.g., rediscovered the love of hiking, or learn how to play a musical instrument). Put yourself out there. Try anything creative.

11. Focus on stress management. When harried and stressed, single parents often find themselves less able to connect with their kids or focus at work, which may lead to acting-out behavior by the children, time-consuming mistakes at work, and other things that increase stress for the parent and his/her family. Therefore, taking a proactive stance on stress management is quite important. Having several quick stress relievers on hand (e.g., breathing exercises, reframing techniques, having different/positive ways of looking at a stressful situation, etc.), as well as long-term stress management strategies in place (e.g., regular exercise, meditation, a hobby, a supportive social circle, etc.) can relieve significant stress for single parents.

12. Hopefully you have been able to create a good working relationship with your ex for the benefit of your youngster. If not, and the sparks fly very time you see each other, it would be wise to consult a counselor. Even if the relationship with your ex has no chance in the world of being civil, there needs to be a peaceful environment for the youngster.

13. Kids with Aspergers may seem to be unaware of the environment around them, but they usually are much more in tune with the emotions of others than it appears. If the moms and dads are arguing or fighting, the youngster is apt to act-out with defiant behaviors. The grown-ups in the situation, by keeping their own tempers, can prevent this. Remember that although your relationship may be over, the relationship both of you have with your youngster is not.

14. Know that you are not alone. Having an Aspergers or HFA youngster can feel very isolating. It’s easy to stay home and think that you are the only one dealing with that situation. Seek out support groups. Form your own groups, if none exist.

15. Learn to enjoy your own company. It may have never occurred to you when you were married that you could actually enjoy your own company. You can do that. Don’t date too soon. You can fall in love too quickly. You can’t be a great parent unless you are a great person.

16. Minimize the tough times. Holidays are hard when you don’t have your special needs child because he or she is visiting the other parent, so make a plan. Know you will feel bad – and know it will end.

17. Move your bedroom to a different room in your house. Make the old one a study or kid’s play room. Redecorate to reflect your individual tastes and make the house more of your home.

18. One major advantage that married couples have is companionship. There’s nothing like being with a spouse who knows and understands the daily problems you encounter. Having someone you can vent your frustrations to keeps one mentally healthy. It is human nature to want to share. If you don't have anyone in your life that you can share your feelings with on a daily basis, work at developing friendships that are true give-and-take relationships. A local support group that includes single parents might be helpful. Some support groups have a network of parents who are on “phone duty” that you can call at any time when you need to talk or vent your emotions.

19. Sometimes, ex in-laws can become a problem for you. A direct approach to the grandparents may not be welcome. If you find yourself in this situation, begin by bringing the matter to the attention of your ex, who may be willing to intervene on your behalf. If your ex refuses to support you in this matter, limit your interaction with the grandparents as much as possible. While they have every right to see their grandchild, you can and should limit your own time with them for your own sanity.

20. You can never take a day off from being a parent, and you may not be able to take a day off from work whenever you like, but there are things you can give yourself a day off from. Next time you're feeling particularly stressed, messed up, tired out or done in, declare a day off from:
  • Being behavior cop
  • Being SuperMom or SuperDad
  • Caring what other people think
  • Doing research
  • Fighting battles
  • Filling out forms
  • Handling details
  • Holding it in
  • Knowing it all
  • Making appointments
  • Making phone calls
  • Multitasking
  • Planning ahead
  • Saying the right thing
  • Serving as case manager
  • Solving problems
  • Working out
  • Worrying

Special Offer for Single Parents of Kids on the Autism Spectrum


COMMENTS:

•    Anonymous said… Thanks for the reminders. So easy to forget to take time for yourself with everything going on and being the only parent holding things together.
•    Anonymous said… I wouldn't wish single parenthood on my worst enemy because it is so hard. However, I think it's far more important to be the most positive, most enthusiastic cheerleader and champion for my son to help him be the best that he can be. No role model is better in my mind than a bad role model. It's difficult enough being a parent, but having a child on the spectrum is an added challenge. I can't be a basket case because of being the mom my son needs and trying to juggle a relationship that doesn't support or promote my abilities as a mother for my children.
•    Anonymous said… I know what you mean. A child with asbergers requires so much attention because they aren't able to socialize Knowing that a parent is always there for them makes them feel more secure. I'm the same. I've been divorced for 12 years and haven't had a relationship since. Because I've made my son feel so secure growing up at 21 he is thriving in his 3rd year of universtiy away from home. He has his twin sister nearby for companionship, he speaks to me on the phone for an hour each day and he comes home every five to six weeks for a week. He hasn't made any friends at university because he's just not able to but he knows we are always there for him. It's extremely important for kids/adults with asbergers to know you've got their back 100%.
•    Anonymous said… I am the single parent to two children on the spectrum. I find being a single parent far easier than when I was married. I am utterly focused on the boys. There is no, and there will be no, relationship to try and juggle alongside. I'm mum. I'm not wife. Everything is about the boys. Our relationship is so much stronger and it's the three of us. I much prefer single parenthood.

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Place-Blindness in Individuals with ASD

Some children and teens – and even adults – with High-Functioning Autism and Aspergers frequently become lost because they can't remember previously seen places. An estimated 33% of people with Aspergers suffer from “place-blindness” (also called topographic agnosia), which causes them to become lost easily. This can happen even in areas they know very well if a familiar landmark has changed.

Place-blindness is a form of “visual agnosia” in which the individual can’t rely on visual cues to guide him directionally. However, he may still have an excellent capacity to describe the visual layout of the same place or location. People with place-blindness may have the ability to read maps, but often become lost in familiar environments.

A person with place-blindness could live in a neighborhood for years and not recognize local houses if he sees them out of context (e.g., a photo featuring the house on its own). When out on a hike, the place-blind child or teen may remember certain landmarks (e.g., a bridge, waterfalls, fallen tree, etc.), but otherwise be unable to find his way around the woods even on a route he has traveled many times.

Place-blindness can be extremely maddening. Even some adults with Aspergers may frequently take wrong turns and arrive late for appointments and social engagements, which cause them to appear inconsiderate or forgetful. In addition, they don’t have the option of changing their usual routes or trying new shortcuts without the risk of getting lost. Place-blind people tend to rely on specific landmarks (e.g., a billboard, telephone booth, a tall tree, etc.), but they may become lost even on a familiar route that has been traveled many times.

Place-blindness may occur in conjunction with “face-blindness” (also called prosopagnosia), but many Aspies with place-blindness have very good face recognition skills, thus, having one condition doesn’t necessarily mean that the person will have the other. Both conditions run in families, suggesting a genetic component. While many place-blind individuals have a poor directional sense or impaired map reading ability, some are strong in these skills and have only impaired place or landmark recognition.



Coping techniques for place-blindness:

1. Alternate cues may be particularly useful to a person with place-blindness. Alternate cues may include color cues or tactile markers to symbolize a new room or to remember an area by.

2. Check out any new areas that you will be traveling to beforehand to see if there is a nearby cafe or other place you can wait if you don’t get lost and end up arriving early.

3. If you have strong map-reading skills, bring a map everywhere you go.

4. If you will need to travel a new route in the near future and it is very important to arrive on time, do a dry run beforehand and commit as many landmarks to memory as possible to lower the risk of getting lost.

5. Leave early for appointments whenever possible so that time for getting lost is factored in.

6. Make a point of actively memorizing landmarks that are unlikely to change or be removed.

7. Memorize route directions (north, south, east, and west) and numbers of blocks, and carry a compass to assist with navigation.

8. Naming landmarks out loud or thinking about their features verbally may help in committing them to memory.

9. Use a global positioning system (GPS) device to obtain directions.

10. Using verbal descriptions of routes.
 
 

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