HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Cognitive and Behavioral Inflexibility in Kids on the Spectrum

“Why are transitions so difficult for my autistic child (high functioning)? It’s impossible to get him to stop what he’s doing at the time without a huge row. What are some strategies which can help when moving from one thing to the next?”

One frequently observed feature of High-Functioning Autism (HFA) and Asperger’s is inflexibility in thought and behavior. Inflexibility seems to pervade so many areas of the lives of children on the autism spectrum. Novel situations often produce anxiety. These kids may be uncomfortable with change in general, which can result in behavior that may be viewed as oppositional and can lead to emotional meltdowns. This general inflexibility is what parents and teachers often label as “rebellion.”

There are two types of inflexibility:
  1. Cognitive inflexibility occurs when the child is unable to consider alternatives to the current situation, alternative viewpoints, or innovative solutions to a problem. The child with inflexible thinking tends to view things in “either-or” terms (e.g., things are either right or wrong, good or bad). He or she wants concrete, black and white answers. The “gray areas” of life are very uncomfortable (e.g., the child often has an exact way of doing things with no variations). 
  2. Behavioral inflexibility refers to a child’s difficulty maintaining appropriate behavior in new and unfamiliar situations. Flexibility enables children to shift effortlessly from task to task in the classroom, from topic to topic in conversation, from one role to another in games, etc.

Children with HFA may have many fears in addition to those related to unexpected changes in schedules. Large groups of people and busy/noisy environments (e.g., school hallways, cafeterias, playgrounds, bus stations, etc.) tend to overwhelm children with HFA. They may also be overwhelmed by unexpected academic challenge or by having too many things to remember or too many tasks to perform.

They often have limited frustration-tolerance and may display tantrums when thwarted. Routines and rules are very important to kids with HFA in providing a sense of needed order and structure, and thus, predictability about the world.

Another form or inflexibility is moralism, a kind of self-righteous and strict adherence to nonnegotiable moral principles that is often out of context with practical reality. An example may be a youngster who criticizes a parent who has run a yellow traffic light when the parent is on the way to the emergency room for treatment of a severe injury.

Inflexibility is also found in the rigidity over matters that are of little consequence, such as arguing about whether the route to the emergency room was the quickest when it might be the difference between a few hundred yards by choosing to take one turn over another. In the classroom, this may be found when an HFA student fixates on a perception that a teacher has not enforced a rule consistently. Such fixations on moral correctness can escalate and interfere with availability for instruction.

Reasons for Inflexibility—
  1. Transitioning from one activity to another. This is usually a problem because it may mean ending an activity before the HFA child is finished with it.
  2. The need to engage in - or continue - a preferred activity (usually an obsessive action or fantasy). 
  3. The need to control a situation. 
  4. The need to avoid or escape from a non-preferred activity (often something difficult or undesirable). Often, if the child can’t be perfect, she does not want to engage in the activity.
  5. Other internal issues (e.g., sensory, inattention (ADHD), oppositional tendency (ODD), or other psychiatric issues may also be causes of behavior. 
  6. Lack of knowledge about how something is done. By not knowing how the world works with regard to specific situations and events, the child will act inappropriately instead. 
  7. Immediate gratification of a need. 
  8. Anxiety about a current or upcoming event (no matter how trivial it may appear to the parent or teacher). 
  9. A violation of a rule or ritual (i.e., changing something from the way it is “supposed” to be). When someone violates a rule, this may be unacceptable to the HFA youngster. 
  10. A misunderstanding or misinterpretation of another's action.

Inflexibility is often the result of anxiety. The cause of anxiety in the HFA child has a lot to do with the fact that she does not have the ability to understand the world like “typical” kids do.

Because of the neuro-cognitive disorder, the child:
  • will have difficulty understanding rules of society
  • needs explicit instructions
  • does not understand social cues
  • does not understand implied directions
  • does not know how to “read between the lines”
  • does not “take in” what is going on around her

“Facts” are what kids with HFA learn and feel less anxious about. Since these “special needs” kids have a hard time with all the normal rules of society, having “rules” has a calming effect on them. They think, “This is the rule. I can handle it o.k.”

Facts also have to be from someone they think is an “expert” in their eyes. Teachers and doctors may have this leverage with them, but moms and dads are, for the most part, not considered “experts.”

Understanding what causes so much anxiety, tantrums, meltdowns, shutdowns, and out-of-control behavior helps parents to know where their HFA child is coming from, and with that, parents will be able to help their kids less stressed-out.

Parenting Strategies—

Here are some strategies for dealing with an inflexible-thinking youngster:

1. While helping your HFA child to deal with change, be prepared to weather the storm. There will be sadness, tears and tantrums – followed by parental guilt. It’s all part of the process. Remain calm, and accept your youngster for who and what she is.

2. Turn the “change” into an adventure. For example, turn “Are you ready to start a new school year” into “Wow, just think. You’ll get to see all your classmates again.” Since any change can seem frightening to children on the spectrum, the language you use can turn the change into a fun adventure. Changing the tone to one of excitement can make a world of difference in your child’s attitude.

3. Read articles and books about the change in question. Almost any change that your child is going through has been written about (e.g., new siblings, moving to a new neighborhood, starting a new school year, etc.). Go to the library and get as many books as you can on the topic and read together. Reading helps open the lines of communication to talk about the difficulties of the change that is coming.

4. Prepare your HFA youngster for what may happen – and be honest. Voice your plans in a reassuring tone. Explain to him in concrete terms where you will be going, or what may happen along the way, so that he is prepared well before and ready for the change. Also, answer your child’s questions, and tell him the truth (i.e., don’t sugar-coat the situation) so that trust develops. Many tantrums and meltdowns can be avoided, because you keep reminding him throughout the day of what’s going to happen. In this way, there are no unwanted surprises.

5. Many kids on the spectrum have difficulty with the concept of time. But, you can provide your child with simple strategies to measure time (e.g., use an alarm clock or kitchen timer for task transitions, clean up times, or evening rituals). Let your child place a calendar centrally, and help her keep track of important dates (e.g., birthdays, holidays, vacations, the first day of school, etc.). Signal your child verbally or set countdowns for when she must leave an activity that she is enjoying (e.g., “I’m going to turn off the computer in 10 minutes because we are getting close to lunch time”).

6. Let your HFA youngster know of some changes in life YOU have undergone – and how you managed them. Your examples are a way of helping your child cope with change in the future. Relate to his situation. Tell stories about when you have had to weather the storms of change. Also, you can talk about what you might have done differently – something that could have facilitated a better outcome. Alternatively, you can talk about the changes within the other family members and how they changed with circumstances.

7. Kids on the autism spectrum love to follow a routine. Anything away from that worries them. They feel best when they are able to predict things. They feel safe when they know what is on the agenda for the day or what they have to do next. They want to know how other people are likely to behave or react, and what will happen from day to day. So, if you and your youngster are undergoing a significant period of change, try to keep most of his routine the same.

8. Help create sameness by repeating a similar “comfort phrase” (e.g., “Sometimes we have to change our plans, and we will be O.K. when that happens”). Use this exact phrase (or something similar) every time flexibility is needed. This helps to bring a sense of control and predictability during chaos. Your youngster will remember that you said that the last time a change was needed – and everything eventually turned out just fine.

9. Focus on just a few areas where flexibility is needed most. For example, if your youngster is constantly distressed when you’re out running errands, this is the place to start. If he is upset over having a babysitter, start there. If he won’t leave the grandparents’ house without a tantrum, focus on that issue.

10. Encourage your HFA youngster to explore and engage in new activities and interests. In this way, you help her cope with change that will come later in life. When she goes through various new experiences, it provides a fundamental base that strengthens her emotional muscles. It helps her feel good about herself and develops self-confidence.

11. Don’t unintentionally reward your youngster for acting-out due to an unwanted routine change. Uncontrolled anger warrants a predictable, swift consequence. Losing a particular privilege may be the best consequence for HFA children. Be firm. Don’t underestimate your youngster’s ability to manipulate you. Even severely autistic kids can be master manipulators.

12. Create behavior incentives using something that is the same each time (e.g., tokens, tickets, stickers, etc.). Let the sameness of the identical token be the familiar thing during the unfamiliar situation. You can also use marbles dropped into a jar (the smooth texture and “clicks” when they drop is satisfying to most autistic kids). For example, explain to your youngster, “When we leave the park today, if you don’t cry, you’ll get a marble to put in the jar when we get home.” Let her cash in the marbles for a reward at the end of the day.

13. Change itself can come quickly or slowly, but adjusting to the new state of affairs takes time. Make sure you give your youngster – and yourself – the luxury of having time to adjust. Try not to expect too much too soon. Some changes are easy to adjust to, others aren’t. Some HFA children adapt quickly to change, some don’t. As the parent, simply keep doing what you are doing, and know that most changes eventually leave everyone in better places than where they began.

14. Attempt to see things from your child’s point of view. Ask her how she perceives a particular change. A child who airs her misgivings about unwanted changes is more likely to cope better. Talk about the details of what will happen, where she will be, and what she will have to do. Doing so repeatedly helps your child feel prepared.

15. Lastly, always demonstrate love and appreciation when your child “tries” to accept a new situation with courage – even if he is unsuccessful. In other words, be sure to reward “effort” with acknowledgment and praise, regardless of whether or not the desired outcome occurred.

Treatment—

An effective treatment program for inflexibility and “insistence on sameness” actively engages the HFA youngster’s attention in highly structured activities, builds on his interests, offers a predictable schedule, provides regular reinforcement of behavior, and teaches tasks as a series of simple steps. This type of program generally includes the following:
  • specialized speech/language therapy to help kids who have trouble with the pragmatics of speech (i.e., the give-and-take of normal conversation)
  • social skills training, a form of group therapy that teaches HFA kids the skills they need to interact more successfully with their peers
  • parent-training and support to teach moms and dads behavioral techniques to use at home
  • occupational or physical therapy for kids with sensory integration problems or poor motor coordination
  • medication for co-existing conditions (e.g., depression and anxiety)
  • cognitive behavioral therapy, a type of “talk” therapy that can help the more explosive or anxious kids on the spectrum to manage their emotions better and cut back on obsessive interests and repetitive routines

In summary, due to the fact that change causes anxiety in young people with HFA, they will want to live by inflexible rules that they construct for themselves. One of their main rules goes something like this:  “My routine must NOT be disrupted, and involves X, Y and Z. Each time I can do X, Y and Z – in that order – my life has some predictability. When I don’t have this predictability, I feel anxious, which is a very painful emotion that needs to be avoided at all costs!”

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