School Refusal in Children with ASD

Question

What do you do if your 9 year old with high functioning autism is refusing to go to school ever again? Do I take her kicking and screaming? Home-school? What?

Answer

Some ASD (high-functioning autistic) kids 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 ASD youngster or teen 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. Separation Anxiety 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 an untoward 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 (such as 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, ASD 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 teenager in a shopping mall who feels a lot of distress if they can't always see their parent may be exhibiting a symptom of separation anxiety)
  • have difficulty going to sleep
  • have exaggerated, unrealistic fears of animals, monster, burglars
  • have nightmares about being separated from their parent(s)
  • have severe tantrums when forced to go to school

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 autistic youngster is suffering from school refusal disorder:

• Anxiety or panic attacks
• Depression
• Drug/alcohol use
• Failing grades
• Fatigue
• Frequent physical complaints such as headaches, stomachaches
• 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 a student has school refusal disorder or another psychological or possibly even a physical disorder.

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

Because the anxiety is about separating from the parent (or attachment object), once the youngster or teen gets to school, they usually calm down and are OK. It's getting them there that is the real challenge.

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

When school refusal is anxiety-related, allowing the "special needs" youngster to stay home only worsens the symptoms over time, and getting the youngster back into school as quickly as possible is one of the factors that is associated with more positive outcomes. To do that, however, requires a multimodal approach that involves the student's physician, a mental health professional, the moms and dads, the student, and the school team. 
 
The same therapeutic modalities that are effective with Panic Disorder and Obsessive-Compulsive Disorder are also effective for school refusal, namely, exposure-response prevention (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 their fears and is educated in the differences between fear, anxiety, and phobias. They learn to recognize the physical symptoms that are associated with each of these states and are given information to help them overcome their fears about attending school. 
 
The student is usually asked to keep a daily diary where they record their fears, thoughts (cognitions), strategies, and feelings about going to school. The time of day that they arrived at school is also recorded, and the record is reviewed each morning with the school psychologist. Although it might seem like a good idea to incorporate positive reinforcement for school attendance, that may backfire and merely increase the student's stress levels and anxiety. 
 

Parent training in strategies to work with the 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, accommodating the youngster by letting them stay home is generally contraindicated, unless there are other issues. So what can moms and dads do? Here are some tips:

• A youngster's reluctance to go to school can be irritating to moms and dads. Expressing resentment and anger is counterproductive. And you won't feel the urge to do so if you adopt specific strategies to assist your youngster.

• Be open to hearing about how your youngster feels. However, lengthy discussions about the youngster's 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 your youngster be free of worries and fears.

• Do not deny the youngster's anxiety or worries, but acknowledge them and reassure him/her. For example: "I know you're worried I won't be there to pick you up, but there's no reason to worry. I'll be there."

• Do not quiz your child about why s/he feels scared. The youngster often does not know why. By not being able to provide an explanation, in addition to being anxious, the youngster feels guilty about not making sense of what is happening. Better to acknowledge that the fears make no sense and that the child has to fight them.

• It is most important to tell the Aspergers youngster exactly what s/he is to expect. There should be no "tricks" or surprises. For example, a youngster may be told that he should try to stay in school for only one hour, but after the hour he is encouraged or asked to stay longer either by the school 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?”.

• Punishment does not work, but kind, consistent, rational pressure and encouragement do.

• Try to find ways to enable the Aspergers 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.

 
Resources for parents of children and teens on the autism spectrum:
 

==> Videos for Parents of Children and Teens with ASD
 
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Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

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COMMENTS:

•    Anonymous said… Elizabeth Munoz. Try Wowbutter. It looks and tastes exactly like peanut butter but is 100% soya beans. It was made for school bans. My daughter can't tell the difference. And for me, the best thing ever (I developed an allergy after being pregnant!)
•    Anonymous said… Food is a major issue with kids I packed muly kids much everyday :)) that's what you have to do but depends on school cause he only liked pb and j sandwiches and the school wouldn't aloud penut butter so yes it a very difficult situation with food it sucks ://
•    Anonymous said… Food plays a huge part in upsetting my son and not wanting to go in he is only six of friends run off and don't wait for him to go in for lunch he doesn't go in and it's gone un noticed by dinner ladies !!thats a long time to go without food:( breaks my heart ,if I brought him home for lunch I wouldn't get him back in and he struggles with being different and standing out !difficult situation!!
•    Anonymous said… I had no choice, she wasn't kicking and screaming but her mental health wasn't right, we were abroad, since then I've worked with children and have a better understanding of myself and others with autism. We used to have units attached to schools (Weymouth had one) they were brilliant with good teachers and teaching assistants and environmental was geared to needs. That's what we need, we need to be allowed to decide main stream isn't always the way.
•    Anonymous said… I had this problem with my son, who has HFA, a couple of years ago. In the end I had to make the decision to keep him home, untill a meetting was set up with school and health care professionals, to decide how to proceed for his best interests. The reason being, he has autism related food refusal, and during the time he was do distressed about going to school, his food refusal got so bad that he started losing weight and became iron deficient. It took 2 years to finally get him settled and happy at school.
•    Anonymous said… I spent nearly EVERY day of my sin's first grade year with him refusing to go to school. The school told me he'd have to go to "truancy school", with kids from junior high! I completely freaked out and fought back, but basically we just struggled through the miserable year. Second grade was better--his teacher was AMAZING! Made all the difference.
•    Anonymous said… In my experience, you can only take them 'kicking and screaming' for so long before it takes its toll on the physical and emotional health of everyone involved. It might be helpful to keep in mind that behavior IS communication. Even for kids with this school refusal disorder, they aren't doing this just to make our lives miserable. Sometimes the school setting or routine just doesn't work for every child. Thankfully there are plenty of alternative schooling options these days!
•    Anonymous said… My sons school is great with the food issue. They always make sure he has something for lunch that he will eat. The problem was, he didn't transition very well from daycare to school, (I live in Sweden). When he first started he was fine. But three months in, he could no longer hold it together and the big change took it's toll, and he almost stopped eating all together, and ended up on specially prescribed drinks.
•    Anonymous said… No. Don't take her kicking and screaming. Find out why the child doesn't want to go. Wish I had done this with my older son back about 15 yrs. ago. Now I homeschool my youngest. Something I really wished I had done with my middle son.
•    Anonymous said… There can be all kinds of reasons why children on the spectrum suffer at school, from communication problems (and that covers everything from feeling bullied to not having a clue what is happening in class or what is required of them) to sensory overload. The drip drip of fear, anxiety and confusion may not even come out in meltdowns at school. Schools frequently refuse to understand or make even the simplist of accomodations. Forcing human beings into a situation detrimental to their mental health and ruining educational opportunities is abuse. It's power play on the adult side to never listen and accept childrens feelings.
•    Anonymous said… There isn't enough xaxax in this world for me to try homeschooling.
•    Anonymous said… there's no one fit fix for all. Know your child, hear your child and love your child and you'll know what the kick n scream is about.
•    Anonymous said… Unless the child is being abused, "why" they have problems in school is irrelevant. They are engaged in a power play with you. Do not let them win. Take it from someone on the spectrum who has taught and worked with autistics for years.
•    Anonymous said… We had this with Aspergers son. We insisted he go. We regretted that when he had a big meltdown at school and an altercation with teachers. He must have had a reason for the refusal.
•    Anonymous said… Also the school being proactive and setting up these meetings yourself really helps because alot of times things will go faster and smoother with us really involved, I kinda am learning as I go.
•    Anonymous said… Don't put her through it... she may be losing much more than any wins......homeschool or special learning schools - small size classes small school.....
•    Anonymous said… Homeschool. Works for us.
•    Anonymous said… If you can, you change your life and take them out of school.
•    Anonymous said… In second grade my daughter begs to not have to go. She quit sleeping at night, vomited in the morning, cried getting out of the car at school. Teacher said all is fine. She got back in the car in the afternoon, started crying, vomited all the way home and has massive meltdowns until bedtime and then the cycle started over. She was fine in school according to the school. At six weeks in I pulled her to homeschool. She was evaluated with a high IQ, Aspergers, anxiety and depression. It's been three years and life is much better for her. She is coping successfully educationally, emotionally and with her anxiety.
•    Anonymous said… Is there a reason why the child is refusing? is child being bullied? Is child failing classes? Do you have a school that has a special ed department with small classes? i have a current 7th grader in public school. K-5 he was in regular classes. since 6st grade he has been in a special day class with minimal students. His teachers have taught special ed for years and work very well with him and the other students in the class. We are currently working on getting placement for high school as the public high schools do not seem to have small classes for our sensitive kids. We are mainly looking at charters/magnets that have special ed departments with small classes. While my son attended regular classes in elementary, we tried last year to put him into a regular class for two hours and it was a nightmare. He developed bad ocd which led us to medicate him...a HUGE mistake for us as it made him violent.
•    Anonymous said… My 13 year old has aspergers and high anxiety. She was bullied at school, and I just couldn't send her back. We discovered K12 online schools. We have done it for 2 years now, and it is working for us.  :)
•    Anonymous said… My daughter is 9 and ad the yrs went on it got harder and nearly impossible to get her to school. I had to resort to homeschooling to stabilize the situation get her evaluated, take a break and get proper personalised tools in place to help her feel comfortable going to school. The school referred an aid from a program that would come an hour before school and go with her to school and stay for 2 more hours with her. That helped her atleast try school again but she still was off and on about school. Then we got an IEP and she has daily access to the special education room even though she's super smart. Ever since she has been able to go to the special education room she has been going to school since it's been about a week but she's doing good and that may be the key for her to be calm and go.
•    Anonymous said… My oldest is 14 and we have a 11 yr old too. They both refused to go to school and disliked it. I literally have took them both, carried them, crying and screaming. I had enough. How can they be learning? We have homeschooled for 4 years. Things are so much better. Not worth their anxiety and stress for my "quiet" time.
•    Anonymous said… My son is high functioning autistic.. The beginning of the school year was super rough...The first couple of weeks we had to drive him and take him in kicking and screaming (transitioning is not our strong point) but once he got used to going back he was fine.. Hes in 5th grade we have an IEP in place he eats lunch in the office and if hes having a rough morning he goes into the Deans office and hangs out with him.
•    Anonymous said… Not if you want to maintain a trusting relationship with your child. They aren't mucking up. It seems that this is pretty classic for our special kids (including mine). The school refusal is a cry for help and letting you know the current situation isn't working. Dragging her kicking and screaming will just traumatise her further and fracture the trust she has in your relationship with her. From my perspective no education is worth that. See if you can find another option for her that suits her needs better.
•    Anonymous said… Same issue here but a long time ago now. Oliver didn't see why he had to go to school but I pointed out it was the law and if he didn't go to school I would have to go to prison. He accepted this and went to school because he didn't want me to go to prison. Of course it depends on your relationship. I know some children who would see this as a bonus. He did continue to argue the point on a regular basis but I would remind him that it was the 'rule'.
•    Anonymous said… Same with mine but we had to support this by discussion during periods of calm. This included the odd occasion when we 'agreed' to his having a day off from school BUT he would have to go along with my plans for the day including stuff like shopping (which he hated). Oliver knew I had to go to work to pay for his food and computer stuff etc and essentially learned to rationalise his own thinking to accept the status quo. He continued to hate school but accepted the rules.
•    Anonymous said… Same with my 10yo Asperger's son. We started homeschooling this year. Perfect for our situation:)
•    Anonymous said… She was homeschooled for about 7 months this school yr during the whole process. She has asbergers, anxiety and adult defiant disorder.
•    Anonymous said… This works for some kids and worked with mine for a little while. My sons anxiety was too high to be able to make rational decisions once he was in a heightened state.
•    Anonymous said… You really have to be their advocate. So many untrained individuals that don't really understand our kids. Believe your kids more. My daughter is now in her twenties and out of frustrations of not knowing how to handle the spectrum as a whole a lot of abuse takes place. Which of course comes in many forms so can be very discouraging for our kids. Over the years some were caught and fired. It's really about having a heart to want to work with them with proper training. Stay strong and love and encourage them. They need us.


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