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Aspergers and HFA Children Who Refuse To Go To School

Question

"My son J___ has been "playing hooky" since he suddenly became afraid of going to school. Before then he attended grammar school (pre-university). He was very young when he went there (11, skipped one class) and failed the 1st year, passed the next 1st year and then failed the 2nd year. He had to leave school. The next 2 efforts at other (lower level) schools failed miserably. I think his self-confidence was shot.

We also experienced an extremely turbulent family life. All sorts of governmental institutions became involved, and after oodles of interviews and tests they concluded that a) I'm a threat to my son, b) he has to be placed outside the home and c) he has to go back to school at all costs. This also included reporting him for a court appearance.

J___ has indicated he only feels safe at home and has recently been diagnosed with Asperger/PDD-NOS. He has, in any case, trouble with adhering to the rules of society. I'm afraid I might be at fault there, as I don't really fit in either.

He wants to learn, I ordered a home school study for him and he went through it like a hot knife through butter until he reached the mandatory literature part. He can't do it, he says. They now want him to go through a day treatment plan and place him in a special school. J___ has indicated he will run away as he doesn't want to be treated as a retard (his words).

Why am I reaching out to you? English is my dominant language and I tend to think in it. I'm also looking for a neutral, objective second opinion as well as support in helping my son. Because despite what the Dutch organisations say, I do want to help my son, just not by making him march to the music and be miserable.

Last week I asked a child psychologist what she would have done with a young Einstein and she told me I was a 'smart allic' (OK, she might have a point there). Basically the intention is to medicate J___ up the kazoo, place him outside the home and take parental rights away from me because I'm the threat. I view this differently (obviously) as I have managed to steer him through 'normal' schools for nearly his complete school period. In my opinion this has benefitted him more, and has exposed him to more opportunities and information then if he had been secluded in special education from an early age. No, I'm not bashing the special education system, but it's just not for J___.

What would I like from you? Maybe some ideas and thoughts on how to teach J___ to deal with his problems and get a handle on things. My partner and I don't think it's a problem if he 'hangs around' for several more years, we always tend to look after vulnerable and defenseless critters (my partner works at a sheltered workshop, and he himself has dyslexia; we know about so-called hurdles).

This will sound very jumbled and it's a lot of information. Sorry about that. Think you might be able to help? At least think along on how to approach matters in order to help J___? I'd appreciate any feedback (and please don't say you can't help me because I'm in The Netherlands)."


Answer

Re: “afraid of going to school…”

There is a big difference between truancy (skipping school to have fun doing other things) and school refusal (fear of circumstances at school). I think you were blamed for your son being “truant” …but he’s not a truant.

Most Aspergers and High-Functioning Autistic (HFA) children, at some time in their school career, are challenged by anxiety. School phobia (known to professionals as school refusal), a complex and extreme form of anxiety about going to school (but not of the school itself as the name suggests), can have many causes and can include related anxiety disorders such as agoraphobia and selective mutism.

Symptoms include:

• a racing heart
• fatigue
• frequent trips to the toilet
• nausea
• shaking
• stomachaches

Young children on the autism spectrum (up to age 7 or 8) with school phobia experience separation anxiety and cannot easily contemplate being parted from their parents, whereas older kids (8 plus) are more likely to have it take the form of social phobia where they are anxious about their performance in school (such as in games or in having to read aloud or answer questions in class).

Aspergers and HFA children with anxieties about going to school may suffer a panic attack if forced which then makes them fear having another panic attack and there is an increasing spiral of worry with which parents often do not know how to deal.

Going to school for the first time is a period of great anxiety for very young kids. Many will be separated from their parents for the first time, or will be separated all day for the first time. This sudden change can make them anxious and they may suffer from separation anxiety. They are also probably unused to having the entire day organized for them and may be very tired by the end of the day – causing further stress and making them feel very vulnerable.

For older children on the spectrum who are not new to the school, who have had a long summer break or have had time off because of illness, returning to school can be quite traumatic. They may no longer feel at home there. Their friendships might have changed. Their teacher and classroom might have changed. They may have got used to being at home and closely looked after by a parent, suddenly feeling insecure when all this attention is removed; and suddenly they are under the scrutiny of their teachers again.

Other children on the spectrum may have felt unwell on the school bus or in school and associate these places with further illness and symptoms of panic, and so want to avoid them in order to avoid panicky symptoms and panic attacks fearing, for example, vomiting, fainting or having diarrhea. Other kids may have experienced stressful events.

Possible triggers for school phobia include:
  1. Being bullied.
  2. Being off school for a long time through illness or because of a holiday.
  3. Being unpopular, being chosen last for teams and feeling a physical failure (in games and gymnastics).
  4. Bereavement (of a person or pet).
  5. Fearing panic attacks when traveling to school or while in school.
  6. Feeling an academic failure.
  7. Feeling threatened by the arrival of a new baby.
  8. Having a traumatic experience such as being abused, being raped, having witnessed a tragic event.
  9. Moving to a new area and having to start at a new school and make new friends or just changing schools.
  10. Not having good friends (or any friends at all).
  11. Problems at home such as a member of the family being very ill.
  12. Problems at home such as marital rows, separation and divorce.
  13. Starting school for the first time.
  14. Violence in the home or any kind of abuse; of the youngster or of another parent.

Children with Asperger Syndrome need to be dealt with differently to kids without the syndrome as, for example, teaching them relaxation techniques can actually make them more anxious.

A common strategy in dealing with school refusal in Aspergers and HFA children is to switch to a home school environment. However, home schooling a child with the disorder is completely different than educating a non-autistic child. 

Here is a summary plan:

The child can only grow to be fully functioning if he first experiences a fully functional home life. Fighting, crying and meltdowns do not positively contribute to a functional home. The child functions best when conflict is removed, so ALWAYS remove conflict and remain flexible.

• Meltdowns are worse for the child than they are for you. Remain calm and use the child's logic, obsessive compulsiveness and anger as a learning experience. Shutting your ears is tantamount to saying you know everything and are a superior person.

• Nobody can accuse you of being a bad mother. By designing education around the need of your child you are being the best mother you can be. Most people will be grateful that their children do not have the disorder.

• Nobody can read your mind. Think abusive thoughts but NEVER say them because they will destroy the child's confidence and reinforce further unacceptable behavior and school refusal.

• Short term goals are not time specific. They can be revisited and strengthened at any stage. Know that the goals can be re-met if you do things differently.

• Teachable moments are everywhere. School does not have to represent that which we know as beneficial for us. School is everywhere and learning occurs best without stress.

• What I value as important is not important to the child or his development. Allow him to explore that which he is highly interested in, even if it has no recognizable educational value to you.

• When you reign in and block outsiders from coming to your home and adding over stimulus, remember that it will only be for a short time while the child reaches emotional and social equilibrium again. Email and on-line support groups produce no over stimulus to the child and are there 24 hours per day. Use them.

• Work through obsessions. On days when the child is focused on issues not included in the home school learning areas, it is acceptable to investigate the child's obsessions. These are teachable moments that will otherwise be lost.

• You are a team, a package, a caring parent. Team work means working together to get the best result. Work with the child, not against him.

• You can only recognize a bad day because you have first had good days to measure against. Things do improve. Hasten improvement by reducing conflict and grabbing whatever teachable moments you can.

Educational Strategies for the Aspergers Student

Children with Aspergers (high functioning autism) can have difficulty in the classroom often because they fit in so well. Many may miss the fact that they have a diagnosis. When these kids display symptoms of their condition, they may be seen as defiant or disruptive.

Learning about Aspergers in general and about the specific characteristics of your "Aspie" student will help you effectively manage his or her behavior in the classroom.

Below are some helpful hints that can guide everyday school life for students with Aspergers. They can be applied to children with Aspergers across the school years and are applicable to almost all environments:

1. A buddy system can be helpful to Aspergers students. In social situations, the buddy can help the Aspie handle these situations.

2. Any changes―unexpected changes, in particular―can increase anxiety in a child with Aspergers; even changes considered to be minor can cause significant stress. Whenever possible, provide consistency in the schedule and avoid sudden changes. Prepare the youngster for changes by discussing them in advance, over-viewing a social narrative on the change, or showing a picture of the change. The environment can also be managed by incorporating child preferences that may serve to decrease his or her stress (e.g., when going on a field trip, the child might be assigned to sit with a group of preferred peers – or if the field trip is going to include lunch, the child has access to the menu the day before so he or she can plan what to eat).

3. Because children with Aspergers cannot predict upcoming events, they are often unsure about what they are to do. Provide information and reassurance frequently so that the child knows he is moving in the right direction or completing the correct task. Use frequent check-ins to monitor child progress and stress.

4. Children with Aspergers have difficulty distinguishing between essential and nonessential information. In addition, they often do not remember information that many of us have learned from past experiences or that to others come as common sense. Thus, it is important to state the obvious. One way to do this is to “live out loud.” Naming what you are doing helps the youngster with Aspergers accurately put together what you are doing with the why and the how. In addition, “living out loud” helps the child to stay on task and anticipate what will happen next.

5. Enforce bullying rules and minimize teasing.

6. Every Aspergers child needs to (a) be evaluated, (b) have a plan established addressing areas of weakness, and (c) have a teacher that believes in the student and expects him to reach appropriate grade level requirements. Teachers who are willing to learn and implement new strategies will provide the best education for all students.

7. Find opportunities throughout the day to tell students with Aspergers what they did right. Compliment attempts as well as successes. Be specific to ensure that the child with Aspergers knows why the educator is providing praise.

8. Frustration can develop from a lack of understanding that Aspergers students are unable to generalize the skills that they learn. For example, a parent or teacher might work at teaching the student how to respectfully address a teacher. Typically this skill would then be generalized to any person in a position of authority. A student with Aspergers is likely to only apply the skill to the person initially used as the target of respect in the learning process. He will probably not apply this behavior to a supervisor, principal, or police officer.

9. If you have a child with Aspergers, adjust your teaching strategies to accommodate the youngster. Many times, kids with this syndrome see things in a very concrete way. If a youngster raises his hand and the educator responds that she will be with him in 5 seconds, he may very well announce when the 5 seconds have passed because of the concrete way he views things. The educator will have to learn to be precise in what she says and use concrete materials rather than abstract ideas whenever possible in her lessons.

10. It is of the utmost importance that the teacher understands what Aspergers is and how it hinders students. Without a clear understanding of this disorder, the teacher will not understand the student. Actions that are clearly a part of the syndrome can be confused with behavioral issues and dealt with inappropriately.

11. It will be extremely important for an educator of an Aspergers child to create a supportive environment where she can thrive. If she is in an integrated classroom, this may mean helping the other children understand her special needs, pairing her with a buddy and having a consistent predictable schedule as part of the daily classroom routine. The educator may also want to create an area where the youngster can go to and calm down if she gets overwhelmed with a given activity.

12. Keep your language concise and simple, and speak at a slow, deliberate pace. Do not expect a child with Aspergers to “read between the lines,” understand abstract concepts like sarcasm, or know what you mean by using facial expression only. Be specific when providing instructions. Ensure that the youngster with Aspergers knows what to do, how to do it, and when to do it. Be clear, and clarify as needed.

13. Kids with Aspergers can have high levels of anxiety, which makes changes in routine and unpredictable events difficult for them to handle. An educator should plan well ahead and give the child plenty of advanced notice if a change in routine will occur or a new subject will be taught.

14. Kids with Aspergers often display what is known as splinter skills. In other words, they may excel in one area, even beyond their age level, and yet severely delayed in other areas. For this reason, it is important for an educator of a child diagnosed with Aspergers to have him tested in all of his skill areas. It should not be taken for granted that a youngster who excels in math will also excel in reading; many times the opposite may occur.

15. Make a visual schedule that includes daily activities for children with Aspergers. It is essential that the demands of the daily schedule or certain classes or activities be monitored and restructured, as needed (e.g., “free time,” which is considered fun for typically developing youth, may be challenging for children with Aspergers because of noise levels, unpredictability of events, and social skills problems). For a youngster with Aspergers, free time may have to be structured with prescribed activities to reduce stress and anxiety.

A good scheduling strategy is to alternate between preferred and non-preferred activities with periods in the schedule for downtime. It is important to distinguish free time from downtime. Free time refers to periods during the school day when children are engaged in unstructured activities that have marked social demands and limited educator supervision. Lunch time, passing time between classes, and time at school before classes actually begin all meet the criteria for free time. These activities are stressful for many children with Aspergers. Downtime, on the other hand, provides an opportunity for the youngster with Aspergers to relax or de-stress. Children’s downtime may include using sensory items, drawing, or listening to music to relieve stress. During downtime, excessive demands are not made on the children.

16. Middle school and high school settings present new social challenges for the Aspergers student. Passing periods are a desirable time of socializing for most students. For the Aspergers student, passing periods are a social zoo. Allow the student to leave 5 minutes early in order to avoid the overwhelming social interaction. Without such options, the Aspie could possibly spend most of the next class trying to recover from the distressing sensory overload experience.

17. Operate on “Aspergers time.” “Asperger time” means, “Twice as much time, half as much done.” Children with Aspergers often need additional time to complete assignments, to gather materials, and to orient themselves during transitions. Provide this time or modify requirements so they can fit in the time allotted and match the child’s pace. Avoid rushing a youngster with Aspergers, as this typically results in the youngster shutting down. When time constraints are added to an already stressful day, the child can become overwhelmed and immobilized.

18. Some peers can be educated about Aspergers and gain some understanding of what to expect from their fellow student.

19. There is an aspect of learning that is not obvious to students with Aspergers. This aspect of learning includes the basic “how to's” of living. These are things that other students seem to just know. The social know-how that tells most people what is inappropriate conversation material may be foreign to an Aspergers student. Teachers should instruct students struggling in this realm through the use of “scope and sequence” (i.e., teaching the student about the basics prior to expecting the generalized rules to be learned), direct instruction, social stories, acting lessons, and self-esteem building. Social stories and acting lessons give examples of proper actions in given public settings.

20. When planning activities, make sure the child with Aspergers is aware that the activities are planned, not guaranteed. These children need to understand that activities can be changed, canceled, or rescheduled. In addition, create backup plans and share them with the youngster with Aspergers. When an unavoidable situation occurs, be flexible and recognize that change is stressful for people with Aspergers; adapt expectations and your language accordingly (e.g., an educator could state, “Our class is scheduled to go to the park tomorrow. If it rains, you can read your favorite book on trains”).

Prepare children for change whenever possible; tell them about assemblies, fire drills, guest speakers, and testing schedules. In addition to changes within the school day, recurring transitions, such as vacations and the beginning and end of the school year, may cause an Aspie to be anxious about the change. Children with Aspergers may require additional time to adjust to the new schedule and/or environment.

==> The Complete Guide to Teaching Students with Aspergers and High-Functioning Autism

Aspergers Adults and Relationship Difficulties

Question

My son and my husband both have an Aspergers diagnosis. My husband and I no longer live together, and the diagnosis came a year after we separated, following my son’s. My husband no longer wants to work at the relationship and has given up (in my opinion). The divorce paperwork has been initiated.

1) How do you handle a spouse who refuses to accept the diagnosis and its impact on the marriage?
2) How do you handle extended family that refuse to accept the diagnoses (of your child/your spouse) - and continue to blame and lash out at the partner for all problems.
3) What do you do in the case of tactile sensitivities and no interest in sex? How can a spouse handle this?

Answer

Re: How do you handle an Aspergers spouse who refuses to accept the diagnosis/ and its impact on the marriage?

Accepting the diagnosis is not all that important really. What is important is that he understands that he has some areas of weakness (as we all do) on his end – regardless of the origin. So the new question could be, “How do you handle a spouse who refuses to see his contribution to the relationship difficulties.”

In that case, you really only have three choices: (1) continue to try to change him (good luck with that one), (2) take more responsibility for the relationship than he does (not recommended), (3) move on.

Re: How do you handle extended family that refuse to accept the diagnoses (of your child/ your spouse) - and continue to blame and lash out at the partner for all problems.

Don’t do the same thing (i.e., don’t blame them for not accepting the diagnosis). The more you try to convince them that it’s the “diagnosis” fault – not yours, the more you will strengthen their conviction that you were (are) the problem.

Let’s say for sake of argument that they ‘came to their senses’ and agreed that “Aspergers traits” have contributed largely to the relationship difficulties. What will they do with that information? If he’s not willing to work on the relationship, that information is rather useless. The Aspergers traits are not really the problem here – rather it is a spouse who is unwilling to work on the relationship.

Re: What do you do in the case of tactile sensitivities/ and no interest in sex? How can a spouse handle this?

To answer the first question, you may be assuming the lack of interest has to do with tactile sensitivities. This is not always the case. Here are some of the reasons men are not interested:

• I am angry at her
• I am depressed
• I am interested in sex with others, but not with my wife
• I am on medication that lowered my libido
• I am too tired
• I am/was having an affair
• I decided I’m gay
• I don't have the time
• I have difficulty achieving orgasm
• I lost interest and I don't know why
• I no longer find her physically attractive
• I prefer to masturbate, but not online
• I prefer to watch pornography online and masturbate
• I suffer from erectile dysfunction
• I suffer from premature ejaculation
• I wasn't interested in sex to begin with
• I'm bored
• She doesn't seem to enjoy sex
• She has gained a significant amount of weight
• She is depressed
• She is/was having an affair
• She isn't sexually adventurous enough for me

So his lack of interest could be any number of things.

Here are some things to consider about sexless marriages (which you may already know):
  • It is often the man who loses his sexual interest – in fact, women complain about sexless marriages far more than men do.
  • Sexless marriage doesn't mean zero sex – it can also mean very infrequent sex.
  • Sexless marriages are very common – it is estimated that in the U.S. alone there are millions of couples who are living in a sexless marriage.
  • Sexless marriages occur for a variety of reasons, and are usually the result of deeper relationship issues between husband and wife.
  • Sexless marriages occur with couples of all ages, not just older couples.
  • This may be common, but it's not something which has to happen – it's up to the couple to make sure it never happens.

Surviving a sexless marriage is very hard. The feelings of rejection are intense and build up over time. Unfortunately, it doesn’t sound like you will be able to “get him in the mood.” (If he were interested in working on the relationship, I would be giving you a bunch of suggestions to “get him interested.”)

So, move on (easier said than done, but you really should move on). Save your time and energy for a relationship worth keeping.

=>  Living With Aspergers: Help for Couples

=> Skype Counseling for Struggling Individuals & Couples Affected by Asperger's and HFA

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

Click here to read the full article…

How to Prevent Meltdowns in Children on the Spectrum

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

Click here for the full article...

Parenting Defiant Teens on the Spectrum

Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

Click here to read the full article…

Older Teens and Young Adult Children with ASD Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

Click here to read the full article…

Parenting Children and Teens with High-Functioning Autism

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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Highly Effective Research-Based Parenting Strategies for Children with Asperger's and HFA

Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

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