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

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Aspergers Children Who Refuse To Go To School

Question

My son J___ has been "playing hooky" as of Oct 2009, when 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 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 Aspergers children (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 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 Aspergers children 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 Aspergers children 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 children is to switch to a home school environment. However, home schooling a child with Aspergers is completely different than educating a non-Aspergers child. Here is a summary plan:

• 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. 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 Aspergers.

• 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 Aspergers 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 Aspergers 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.


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