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

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Anxiety-Based Absenteeism and School-Refusal in Kids on the Autism Spectrum

Some youngsters with High Functioning Autism (HFA) and Asperger’s (AS) experience fear or panic when they think about going to school in the morning. These kids may tell their moms and dads that they feel nauseous or have a headache, or may exaggerate minor physical complaints as an excuse not to go to school.

When the HFA and AS youngster exhibits a developmentally inappropriate and excessive anxiety concerning separation from their home or from those to whom they are attached, they may be experiencing a Separation Anxiety Disorder. This disorder is characterized by the youngster exhibiting three or more of the following for a period of more than four weeks: 
  1. persistent and excessive worry about losing, or about possible harm befalling, major attachment figures
  2. persistent and excessive worry that a troublesome event will lead to separation from a major attachment figure (e.g., getting lost or being kidnapped)
  3. persistent reluctance or refusal to go to school or elsewhere because of fear of separation
  4. persistent reluctance or refusal to go to sleep without being near a major attachment figure or to sleep away from home
  5. persistently and excessively fearful or reluctant to be alone or without major attachment figures at home or without significant adults in other settings
  6. recurrent excessive distress when separation from home or major attachment figures occurs or is anticipated
  7. repeated complaints of physical symptoms (e.g., headaches, stomachaches, nausea, or vomiting) when separation from major attachment figures occurs or is anticipated
  8. repeated nightmares involving the theme of separation

In addition to the symptoms described above, HFA and AS kids with an unreasonable fear of school may also:
  • display clinging behavior
  • fear being alone in the dark
  • feel unsafe staying in a room by themselves and frequently go check to find their parent or have a need to be able to see their parent (e.g., a child in a shopping mall who feels a lot of distress if he can't always see his parent may be exhibiting a symptom of separation anxiety)
  • have difficulty going to sleep
  • have exaggerated, unrealistic fears of animals, monsters, burglars, etc.
  • have nightmares about being separated from their parent(s)
  • have severe tantrums when forced to go to school

School-Refusal versus School-Refusal Behavior—

There is a significant difference between “school-refusal” and “school-refusal behavior.” The child who ditches school to hang out with his buddies is exhibiting school refusal behavior. Often, this is nothing more than a phase brought on by a sense of rebellion. On the other hand, the youngster who clings to his mom’s leg, screaming at the thought of having to enter the school building, is showing signs of school refusal (also called "anxiety-based absenteeism"). However, the label doesn't matter nearly as much as getting your youngster back in school. Working with school officials (and in serious cases, a therapist) to create a plan is a necessary step.

Is your child refusing to go to school due to real separation anxiety issues, or is he or she simply being defiant? Answers to the following questions may help to determine the motivation behind school-refusal or school-refusal behavior:
  • Are symptoms of school-refusal evident on weekends and holidays?
  • Are there any non-school situations where anxiety or attention-seeking behavior occurs?
  • Have recent or traumatic home or school events influenced your youngster’s school-refusal?
  • How did your youngster’s school-refusal develop over time?
  • Is your youngster willing to attend school if incentives are provided for attendance?
  • Is your youngster willing to attend school if you accompany him or her?
  • Is your youngster’s refusal to attend school legitimate or understandable in some way (e.g., due to a school-based threat, bullying, inadequate school environment, etc.)?
  • Is your youngster’s school-refusal relatively acute or chronic in nature? 
  • What are your youngster’s specific forms of absenteeism, and how do these forms change daily?
  • What comorbid conditions (e.g., anxiety, depression, sensory sensitivities, etc.) occur with your youngster’s school-refusal?
  • What family disruption or conflict has occurred as a result of your youngster’s school-refusal?
  • What is your youngster’s academic and social status? (This would include a review of academic records, formal evaluation reports, attendance records, and IEP or 504 plans.)
  • What is your youngster’s degree of anxiety or misbehavior upon entering school?
  • What specific problematic behaviors are present in the morning before school?
  • What specific school-related stimuli are provoking your youngster’s concern about going to school?
  • What specific social situations at school are avoided?
  • What specific tangible rewards does your youngster pursue outside of school that cause him or her to miss school?

One way of conceptualizing absenteeism involves reinforcers. For example:
  1. to pursue tangible reinforcers outside of school (e.g., sleeping late, watching television, playing with peers, engaging in delinquent behavior or substance use, etc.)
  2. to pursue attention from significant others (e.g., wanting to stay home or go to work with the parent)
  3. to escape aversive social situations (e.g., conversing or interacting with classmates, performing before others in class presentations, etc.)
  4. to avoid school-based stimuli that creates anxiety, frustration, or despondency (e.g., interactions with educators and/or classmates, bus, cafeteria, classroom, transitions between classes, etc.)

Issues 1 and 2 above are maintained by positive reinforcement, or a desire to pursue rewards outside of school. Issues 3 and 4 above are maintained by negative reinforcement or a desire to leave anxiety-provoking stimuli. AS and HFA students may also refuse school for a combination of these reasons. In the case of one young female with Asperger’s, she was initially anxious about school in general. But, after her parents allowed her to stay home for a few days, she was refusing school to enjoy playing video games.

School-refusal Warning Signs—

While one student may complain of headaches or stomachaches, another may refuse to get out of bed, while a third repeatedly gets "sick" and calls home during the school day. Symptoms can run the gamut and may even include combinations of behaviors. Here are some typical warning signs that an HFA and AS youngster is suffering from Separation Anxiety Disorder:
  • Anxiety or panic attacks
  • Depression
  • Drug/alcohol use
  • Failing grades
  • Fatigue
  • Frequent physical complaints (e.g., headaches, stomachaches, etc.)
  • Physical aggression or threats
  • Risk-taking behavior
  • Social problems

Many symptoms, particularly physical complaints, can mimic other disorders. When these occur in combination with a pattern of not attending school, a complete evaluation should be made by qualified professionals to determine whether the child has Separation Anxiety Disorder or another psychological or physical disorder.

Separation Anxiety Disorder can be exhausting and frustrating for moms and dads to deal with, but it is worse for the HFA or AS youngster who feels such intense fear and discomfort about going to school. If parents are unable to get the youngster to school, he may develop serious educational, emotional, and social problems.

Because the anxiety is about separating from the parent (or attachment object), once the youngster gets to school, he usually calms down and can function. It's getting him there that is the real challenge.

School avoidance may serve different functions in different kids. For some, it may be the avoidance of specific fears or phobias triggered in the school setting (e.g., fear of school bathrooms due to contamination or other fears associated with Obsessive-Compulsive Disorder, fear of noisy and crowed hallways, fear of test-taking, etc.). For other kids, it may serve to help them avoid or escape negative social situations (e.g., being bullied by peers, being teased, having a critical teacher, etc.).

When school-refusal is anxiety-related, allowing the HFA and AS youngster to stay home only worsens the symptoms over time. Getting her back into school as quickly as possible is one of the factors that is associated with more positive outcomes. However, this requires a multimodal approach that involves the student's physician, a mental health professional, the mom and/or dad, the student, and school officials. The same therapeutic modalities that are effective with Panic Disorder and Obsessive-Compulsive Disorder are also effective for school-refusal, namely, “exposure-response prevention” (i.e., a form of cognitive-behavior therapy that may include relaxation training, cognitive alterations, and a graded hierarchy of steps towards the goal).

There is some research that suggests that education support therapy may be as effective as exposure therapy for treating school-refusal. Working with the school psychologist, the student talks about his fears and is educated in the differences between fear, anxiety, and phobias. He learns to recognize the physical symptoms that are associated with each of these states and is given information to help him overcome his fears about attending school. The student is usually asked to keep a daily diary where he records his fears, thoughts, strategies, and feelings about going to school. The time of day that he arrived at school is also recorded, and the record is reviewed each morning with a school psychologist. Although it may seem like a good idea to incorporate positive reinforcement for school attendance, that may backfire and simply increase the student's stress levels and anxiety.

Parent training in strategies to work with the HFA or AS youngster in the home is also an important piece of any school-based plan to deal with the student with school-refusal.

When it comes to school-refusal and school-refusal behavior, accommodating the HFA or AS youngster by letting her stay home is generally contraindicated (unless there are other issues). So, what can moms and dads do to address this dilemma? Here are some tips:

1. Try to find ways to empower the HFA or AS youngster to go to school. For example, a youngster is likely to feel reassured if times are set for him or her to call the mother from school. In extreme cases, mothers may stay with the youngster in school, but for a specified length of time (which is gradually reduced).

2. Punishment does not work. Kind, consistent, rational pressure and encouragement do.

3. Investigate what's going on at school. If it's bullying, parents need to find out who the perpetrator is. Once they know whether their youngster’s complaint is a valid one, it's easier to work with him around the issue, both in and outside of school.

4. It is most important to tell the HFA or AS youngster exactly what she is to expect. There should be no "tricks" or surprises. For example, if the youngster is told that she should try to stay in school for only one hour, but after the hour, she is asked to stay longer either by the teacher or parent, this WILL backfire! The youngster will eventually refuse future arrangements for fear that they will be modified arbitrarily. Part of being anxious is anxiety about the unknown and the “what if?”

5. Prevent “secondary gain.” Some parents frequently – yet unintentionally – reinforce separation anxiety symptoms in their HFA or AS child. For instance, when parents get a divorce and the youngster expresses refusal to leave the custodial parent (who may be distraught or saddened by the divorce), the youngster may not be firmly encouraged to appropriately separate and instead is rewarded either overtly or covertly for refusal to separate (e.g., when the youngster who refuses to attend school is excused by the parent). In this case, the parent does not clearly give the youngster the task of developing strategies to adapt to the divorce.

6. Do not quiz the HFA or AS youngster about why he feels scared. The youngster often does not know why. By not being able to provide an explanation, in addition to being anxious, he may feel guilty about not making sense of what is happening. It’s better to acknowledge that the fears are inflated (e.g., a child’s fear that the parent may die while he is at school) and that the youngster has to fight them.

7. Coordinate with school officials. Parents shouldn’t try to address this situation alone. Whether it's arranging to have someone meet you on the playground to escort your youngster into school, or trying to ease the amount of makeup work due to missed school days, it's critical that the school plays a role in integrating your youngster into the classroom.

8. Do not deny or minimize your youngster's anxiety or worries. Instead, acknowledge them and reassure her (e.g., "I know you're worried that I won't be there to pick you up, but there's no reason to worry. I'll be there.").

9. Set a baseline expectation. Having your youngster in school for any amount of time is better than having her at home. Even though your youngster may only come to school for a couple hours or sit in the library all day, it is much easier to get her back into the regular classroom from that point.

10. Be open to hearing about how your youngster feels. However, lengthy discussions about his problems are not always helpful and can be experienced as a burden by the youngster. The focus must always be that you want to help him be free of worries and fears.

11. Make it less inviting to stay home. If your youngster knows she can sit at home and watch TV during the school day, the incentive to stay home is greater than the incentive to be at school. Create a contract, set some boundaries, and make it more worth her while to go to school.

12. An HFA or AS youngster's reluctance to go to school can be irritating to moms and dads. Expressing resentment and anger is counterproductive though. You won't feel the urge to do so if you adopt specific strategies to assist your youngster.

School-refusal can be viewed along a spectrum of absenteeism, and an HFA or AS youngster may exhibit all forms of absenteeism at one time or another (e.g., the child could be anxious during school on Monday, arrive late to school on Tuesday, skip afternoon classes on Wednesday, and fail to attend school completely on Thursday). When you have identified the issue, make a plan and stick to your guns. Once your youngster has overcome the fear of school, he or she will probably thank you.

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