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Aspergers Teens and Video Game Addiction

"I have a partner and many family members with an autism spectrum disorder, but the worst affected is our 19 year old son. He has very limited social skills, isolates in his bedroom for hours on end, his eating pattern is poor, and so is his sleeping pattern. But he is addicted to a game on his computer. How do we as parents encourage him to spend less time on the computer, be a bit more social with the family, eat better, and sleep more?"

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Educating Your Child's Teachers About High-Functioning Autism {Aspergers}

Educators can be great allies in keeping your youngster with Aspergers (AS) or High-Functioning Autism safe and successful in school, but you'll need to make sure they have all the knowledge they need to help. Use the suggestions below to create an information packet to bring educators up to speed...

The Five Main Things Educators Need to Know—

1. If there will be any sort of change in my youngster's classroom or routine, please notify me as far in advance as possible so that we can all work together in preparing her for it.

2. My youngster is an individual, not a diagnosis; please be alert and receptive to the things that make her unique and special.

3. My youngster needs structure and routine in order to function. Please try to keep his world as predictable as possible.

4. My youngster's difficulty with social cues, nonverbal communication, figurative language and eye contact are part of his neurological makeup -- he is not being deliberately rude or disrespectful.

5. Please keep the lines of communication open between our home and the school. My youngster needs all the adults in his life working together.

General Behaviors—

· At times, our youngster may experience "meltdowns" when nothing may help behavior. At times like this, please allow a "safe and quiet spot" where our youngster will be allowed to "cool off" Try to take note of what occurred before the meltdown (was it an unexpected change in routine, for example) and it's best to talk "after" the situation has calmed down.

· Foster a classroom atmosphere that supports the acceptance of differences and diversity.

· Generally speaking an adult speaking in a calm voice will reap many benefits.

· It is important to remember that just because the youngster learns something in one situation this doesn't automatically mean that they remember or are able to generalize the learning to new situations.

· Note strengths often and visually. This will give our youngster the courage to keep on plugging.

· Our youngster may have vocal outbursts or shriek. Be prepared for them, especially when having a difficult time. Also, please let the other kids know that this is a way of dealing with stress or fear.

· Our youngster may need help with problem-solving situations. Please be willing to take the time to help with this.

· Our youngster reacts well to positive and patient styles of teaching.
 

· This syndrome is characterized by a sort of "swiss cheese" type of development: that is, some things are learned age-appropriately, while other things may lag behind or be absent. Furthermore, kids may have skills years ahead of normal development (for example, a youngster may understand complex mathematics principles, yet not be able to remember to bring their homework home).

· When dividing up assignments, please ASSIGN teams rather than have the other kids "choose members", because this increases the chances that our youngster will be left out or teased.

· When it reaches a point that things in the classroom are going well, it means that we've gotten it RIGHT. It doesn't mean that our youngster is "cured", "never had a problem" or that "it's time to remove support". Increase demands gradually.

· When you see anger or other outbursts, our youngster is not being deliberately difficult. Instead, this is in a "fight/fright/flight" reaction. Think of this as an "electrical circuit overload" (Prevention can sometimes head off situations if you see the warning signs coming).

Perseverations—

· Allowing our youngster to write down the question or thought and providing a response in writing may break the stresses/cycle.

· It is more helpful if you avoid being pulled into this by answering the same thing over and over or raising your voice or pointing out that the question is being repeated. Instead, try to redirect our youngster's attention or find an alternative way so he/she can save face.

· Our youngster may repeat the same thing over and over again, and you may find this increases as stress increases.

Transitions—

· Giving one or two warnings before a change of activity or schedule may be helpful.

· Our youngster may have a great deal of difficulty with transitions. Having a picture or word schedule may be helpful.

· Please try to give as much advance notice as possible if there is going to be a change or disruption in the schedule.

Sensory Motor Skills/Auditory Processing—

· Using picture cures or directions my also help.

· Speaking slower and in smaller phrases can help.

· Our youngster may act in a very clumsy way; she may also react very strongly to certain tastes, textures, smells and sounds.

· Our youngster has difficulty understanding a string of directions or too many words at one time.

· Directions are more easily understood if they are repeated clearly, simply and in a variety of ways.

· Breaking directions down into simple steps is quite helpful.

Stimuli—

· Allow him to "move about" as sitting still for long periods of time can be very difficult (even a 5 minute walk around, with a friend or aide can help a lot).

· He may get overstimulated by loud noises, lights, strong tastes or textures, because of the hightened sensitivity to these things.

· Unstructured times (such as lunch, break and PE) may prove to be the most difficult for him. Please try to help provide some guidance and extra adults help during these more difficult times.

· With lots of other kids, chaos and noise, please try to help him find a quiet spot to which he can go for some "solace".

Visual Cues—

· Hand signals may be helpful, especially to reinforce certain messages, such as "wait your turn", "stop talking" (out of turn), or "speak more slowly or softly".

· Some AS kids learn best with visual aides, such as picture schedules, written directions or drawings (other kids may do better with verbal instruction).
 

Interruptions—

· At times, it may take more than few seconds for my youngster to respond to questions. He needs to stop what he's thinking, put that somewhere, formulate an answer and then respond. Please wait patiently for the answer and encourage others to do the same. Otherwise, he will will have to start over again.

· When someone tries to help by finishing his sentences or interrupting, he often has to go back and start over to get the train of thought back.

Eye Contact—

· At times, it looks as if my youngster is not listening to you when he really is. Don't assume that because he is not looking at you that he is not hearing you.

· She may actually hear and understand you better if not forced to look directly at your eyes.

· Unlike most of us, sometimes forcing eye contact BREAKS her concentration

Social Skills and Friendships—

· Talking with the other members of the class may help, if done in a positive way and with the permission of the family. For example, talking about the fact that many or most of us have challenges and that the AS youngster’s challenge is that he cannot read social situations well, just as others may need glasses or hearing aides.

· Identifying 1 or 2 empathetic children who can serve as "buddies" will help the youngster feel as though the world is a friendlier place.

· Herein lies one of the biggest challenges for AS kids. They may want to make friends very badly, yet not have a clue as to how to go about it.


· Young people with ASD may be at greater risk for becoming "victims" of bullying behavior by other children. This is caused by a couple of factors:
  1. There is a great likelihood that the response or "rise" that the "bully" gets from the Asperger youngster reinforces this kind of behavior.
  2. Asperger kids want to be included and/or liked so badly that they are reluctant to "tell" on the bully, fearing rejection from the perpetrator or other children.

Routine—

· Let him know, if possible, when there will be a substitute teacher or a field trip occurring during regular school hours.

· Please let our youngster know of any anticipated changes as soon as you know them, especially with picture or word schedules.

· This is very important to most AS kids, but can be very difficult to attain on a regular basis in our world.

Language—

· Sarcasm and some forums of humor are often not understood by my youngster. Even explanations of what is meant may not clarify, because the perspectives of AS youngster can be unique and, at times, immovable.

· Although his vocabulary and use of language may seem high, AS kids may not know the meaning of what they are saying even though the words sound correct.

Organizational Skills—

· If necessary allow her to copy the notes of other kids or provide her with a copy. Many AS kids are also dysgraphic and they are unable to listen to you talk, read the board and take notes at the same time.

· It may be helpful to develop schedules (picture or written) for him.

· Our youngster lacks the ability of remember a lot of information or how to retrieve that information for its use.

· Please post schedules and homework assignments on the board and make a copy for him. Please make sure that these assignments get put into his backpack because he can't always be counted on to get everything home with out some help.

At times, some of my youngster's behaviors may be aggravating and annoying to you and to members of his class. Please know that this is normal and expected. Try not to let the difficult days color the fact that YOU are a wonderful teacher with a challenging situation and that nothing works all of the time (and some things don't even work most of the time). You will also be treated to a new and very unique view of the world that will entertain and fascinate you at times. Please feel free to share with us whatever you would like. We have heard it before. It will not shock us or make us think poorly of you.

Communication is the key and by working together as a team we can provide the best for our youngster.
 


MORE TIPS for EDUCATORS:

Kids diagnosed with ASD present a special challenge in the educational milieu. This article provides educators with descriptions of seven defining characteristics of ASD, in addition to suggestions and strategies for addressing these symptoms in the classroom. Behavioral and academic interventions based on the author's teaching experiences with kids with ASD are offered.

Kids diagnosed with ASD present a special challenge in the educational milieu. Typically viewed as eccentric and peculiar by classmates, their inept social skills often cause them to be made victims of scapegoating. Clumsiness and an obsessive interest in obscure subjects add to their "odd" presentation. Kids with AS lack understanding of human relationships and the rules of social convention; they are naive and conspicuously lacking in common sense. Their inflexibility and inability to cope with change causes these individuals to be easily stressed and emotionally vulnerable. At the same time, kids with AS (the majority of whom are boys) are often of average to above-average intelligence and have superior rote memories. Their single-minded pursuit of their interests can lead to great achievements later in life.

ASD level 1 is considered a disorder at the higher end of the autistic continuum. Comparing individuals within this continuum, Van Krevelen (cited in Wing, l99l) noted that the low-functioning youngster with autism "lives in a world of his own," whereas the higher functioning youngster with autism "lives in our world but in his own way" (p.99).

Naturally, not all kids with AS are alike. Just as each youngster with AS has his or her own unique personality, "typical" AS symptoms are manifested in ways specific to each individual. As a result, there is no exact recipe for classroom approaches that can be provided for every youngster with AS, just as no one educational method fits the needs of all kids not afflicted with AS.

Following are descriptions of seven defining characteristics of ASD, followed by suggestions and classroom strategies for addressing these symptoms. (Classroom interventions are illustrated with examples from my own teaching experiences at the University of Michigan Medical Center Youngster and Adolescent Psychiatric Hospital School.) These suggestions are offered only in the broadest sense and should be tailored to the unique needs of the individual student with AS.

Insistence on Sameness—

Kids with AS are easily overwhelmed by minimal change, are highly sensitive to environmental stressors, and sometimes engage in rituals. They are anxious and tend to worry obsessively when they do not know what to expect; stress, fatigue and sensory overload easily throw them off balance.

Programming Suggestions—

· Allay fears of the unknown by exposing the youngster to the new activity, teacher, class, school, camp and so forth beforehand, and as soon as possible after he or she is informed of the change, to prevent obsessive worrying. For instance, when the youngster with AS must change schools, he or she should meet the new teacher, tour the new school and be apprised of his or her routine in advance of actual attendance. School assignments from the old school might be provided the first few days so that the routine is familiar to the youngster in the new environment. The receiving teacher might find out the youngster's special areas of interest and have related books or activities available on the youngster's first day.

· Avoid surprises: Prepare the youngster thoroughly and in advance for special activities, altered schedules, or any other change in routine, regardless of how minimal.

· Minimize transitions.

· Offer consistent daily routine: The youngster with AS must understand each day's routine and know what to expect in order to be able to concentrate on the task at hand.

· Provide a predictable and safe environment.

Impairment in Social Interaction—

Kids with AS show an inability to understand complex rules of social interaction; are naive; are extremely egocentric; may not like physical contact; talk at people instead of to them; do not understand jokes, irony or metaphors; use monotone or stilted, unnatural tone of voice; use inappropriate gaze and body language; are insensitive and lack tact; misinterpret social cues; cannot judge "social distance;" exhibit poor ability to initiate and sustain conversation; have well-developed speech but poor communication; are sometimes labeled "little professor" because speaking style is so adult-like and pedantic; are easily taken advantage of (do not perceive that others sometimes lie or trick them); and usually have a desire to be part of the social world.
 

Programming Suggestions—

· Although they lack personal understanding of the emotions of others, kids with AS can learn the correct way to respond. When they have been unintentionally insulting, tactless or insensitive, it must be explained to them why the response was inappropriate and what response would have been correct. Individuals with AS must learn social skills intellectually: They lack social instinct and intuition.

· Kids with AS tend to be reclusive; thus the teacher must foster involvement with others. Encourage active socialization and limit time spent in isolated pursuit of interests. For instance, a teacher's aide seated at the lunch table could actively encourage the youngster with AS to participate in the conversation of his or her peers not only by soliciting his or her opinions and asking him questions, but also by subtly reinforcing other kids who do the same.

· Emphasize the proficient academic skills of the youngster with AS by creating cooperative learning situations in which his or her reading skills, vocabulary, memory and so forth will be viewed as an asset by peers, thereby engendering acceptance.

· In the higher age groups, attempt to educate peers about the youngster with AS when social ineptness is severe by describing his or her social problems as a true disability. Praise classmates when they treat him or her with compassion. This task may prevent scape-goating, while promoting empathy and tolerance in the other kids.

· Most kids with AS want friends but simply do not know how to interact. They should be taught how to react to social cues and be given repertoires of responses to use in various social situations. Teach the kids what to say and how to say it. Model two-way interactions and let them role-play. These kids's social judgment improves only after they have been taught rules that others pick up intuitively. One adult with AS noted that he had learned to "ape human behavior." A college professor with AS remarked that her quest to understand human interactions made her "feel like an anthropologist from Mars" (Sacks, l993, p.112).

· Older children with AS might benefit from a "buddy system." The teacher can educate a sensitive non-disabled classmate about the situation of the youngster with AS and seat them next to each other. The classmate could look out for the youngster with AS on the bus, during recess, in the hallways and so forth, and attempt to include him or her in school activities.

· Protect the youngster from bullying and teasing.

Restricted Range of Interests—

Kids with AS have eccentric preoccupations or odd, intense fixations (sometimes obsessively collecting unusual things). They tend to relentlessly "lecture" on areas of interest; ask repetitive questions about interests; have trouble letting go of ideas; follow own inclinations regardless of external demands; and sometimes refuse to learn about anything outside their limited field of interest.

Programming Suggestions—

· Use the youngster's fixation as a way to broaden his or her repertoire of interests. For instance, during a unit on rain forests, the student with AS who was obsessed with animals was led to not only study rain forest animals but to also study the forest itself, as this was the animals' home. He was then motivated to learn about the local people who were forced to chop down the animals' forest habitat in order to survive.

· Use of positive reinforcement selectively directed to shape a desired behavior is the critical strategy for helping the youngster with AS (Dewey, 1991). These kids respond to compliments (e.g., in the case of a relentless question-asker, the teacher might consistently praise him as soon as he pauses and congratulate him for allowing others to speak). These kids should also be praised for simple, expected social behavior that is taken for granted in other kids.

· Children can be given assignments that link their interest to the subject being studied. For example, during a social studies unit about a specific country, a youngster obsessed with trains might be assigned to research the modes of transportation used by people in that country.

· Some kids with AS will not want to do assignments outside their area of interest. Firm expectations must be set for completion of classwork. It must be made very clear to the youngster with AS that he is not in control and that he must follow specific rules. At the same time, however, meet the kids halfway by giving them opportunities to pursue their own interests.

· For particularly recalcitrant kids, it may be necessary to initially individualize all assignments around their interest area (e.g., if the interest is dinosaurs, then offer grammar sentences, math word problems and reading and spelling tasks about dinosaurs). Gradually introduce other topics into assignments.

· Do not allow the youngster with AS to perseveratively discuss or ask questions about isolated interests. Limit this behavior by designating a specific time during the day when the youngster can talk about this. For example: A youngster with AS who was fixated on animals and had innumerable questions about a class pet turtle knew that he was allowed to ask these questions only during recesses. This was part of his daily routine and he quickly learned to stop himself when he began asking these kinds of questions at other times of the day.

Poor Concentration—

Kids with AS are often off task, distracted by internal stimuli; are very disorganized; have difficulty sustaining focus on classroom activities (often it is not that the attention is poor but, rather, that the focus is "odd" ; the individual with AS cannot figure out what is relevant [Happe, 1991], so attention is focused on irrelevant stimuli); tend to withdraw into complex inner worlds in a manner much more intense than is typical of daydreaming and have difficulty learning in a group situation.
 

Programming Suggestions—

· Work out a nonverbal signal with the youngster (e.g., a gentle pat on the shoulder) for times when he or she is not attending.

· The teacher must actively encourage the youngster with AS to leave his or her inner thoughts/ fantasies behind and refocus on the real world. This is a constant battle, as the comfort of that inner world is believed to be much more attractive than anything in real life. For young kids, even free play needs to be structured, because they can become so immersed in solitary, ritualized fantasy play that they lose touch with reality. Encouraging a youngster with AS to play a board game with one or two others under close supervision not only structures play but offers an opportunity to practice social skills.

· Seat the youngster with AS at the front of the class and direct frequent questions to him or her to help him or her attend to the lesson.

· In the case of mainstreamed children with AS, poor concentration, slow clerical speed and severe disorganization may make it necessary to lessen his or her homework/classwork load and/or provide time in a resource room where a special education teacher can provide the additional structure the youngster needs to complete classwork and homework (some kids with AS are so unable to concentrate that it places undue stress on moms & dads to expect that they spend hours each night trying to get through homework with their youngster).

· If a buddy system is used, sit the youngster's buddy next to him or her so the buddy can remind the youngster with AS to return to task or listen to the lesson.

· Kids with severe concentration problems benefit from timed work sessions. This helps them organize themselves. Classwork that is not completed within the time limit (or that is done carelessly) within the time limit must be made up during the youngster's own time (i.e., during recess or during the time used for pursuit of special interests). Kids with AS can sometimes be stubborn; they need firm expectations and a structured program that teaches them that compliance with rules leads to positive reinforcement (this kind of program motivates the youngster with AS to be productive, thus enhancing self-esteem and lowering stress levels, because the youngster sees himself as competent).

· A tremendous amount of regimented external structure must be provided if the youngster with AS is to be productive in the classroom. Assignments should be broken down into small units, and frequent teacher feedback and redirection should be offered.

Poor Motor Coordination—

Kids with AS are physically clumsy and awkward; have stiff, awkward gaits; are unsuccessful in games involving motor skills; and experience fine-motor deficits that can cause penmanship problems, slow clerical speed and affect their ability to draw.


Programming Suggestions—

· Kids with AS may require a highly individualized cursive program that entails tracing and copying on paper, coupled with motor patterning on the blackboard. The teacher guides the youngster's hand repeatedly through the formation of letters and letter connections and also uses a verbal script. Once the youngster commits the script to memory, he or she can talk himself or herself through letter formations independently.

· Do not push the youngster to participate in competitive sports, as his or her poor motor coordination may only invite frustration and the teasing of team members. The youngster with AS lacks the social understanding of coordinating one's own actions with those of others on a team.

· Individuals with AS may need more than their peers to complete exams (taking exams in the resource room not only offer more time but would also provide the added structure and teacher redirection these kids need to focus on the task at hand).

· Involve the youngster with AS in a health/fitness curriculum in physical education, rather than in a competitive sports program.

· Refer the youngster with AS for adaptive physical education program if gross motor problems are severe.

· When assigning timed units of work, make sure the youngster's slower writing speed is taken into account.

· Younger kids with AS benefit from guidelines drawn on paper that help them control the size and uniformity of the letters they write. This also forces them to take the time to write carefully.

Academic Difficulties—

Kids with AS usually have average to above-average intelligence (especially in the verbal sphere) but lack high level thinking and comprehension skills. They tend to be very literal: Their images are concrete, and abstraction is poor. Their pedantic speaking style and impressive vocabularies give the false impression that they understand what they are talking about, when in reality they are merely parroting what they have heard or read. The youngster with AS frequently has an excellent rote memory, but it is mechanical in nature; that is, the youngster may respond like a video that plays in set sequence. Problem-solving skills are poor.

Programming Suggestions—

· Academic work may be of poor quality because the youngster with AS is not motivated to exert effort in areas in which he or she is not interested. Very firm expectations must be set for the quality of work produced. Work executed within timed periods must be not only complete but done carefully. The youngster with AS should be expected to correct poorly executed classwork during recess or during the time he or she usually pursues his or her own interests.

· Capitalize on these individuals' exceptional memory: Retaining factual information is frequently their forte.

· Kids with AS often have excellent reading recognition skills, but language comprehension is weak. Do not assume they understand what they so fluently read.

· Do not assume that kids with AS understand something just because they parrot back what they have heard.

· Emotional nuances, multiple levels of meaning, and relationship issues as presented in novels will often not be understood.

· Offer added explanation and try to simplify when lesson concepts are abstract.

· Provide a highly individualized academic program engineered to offer consistent successes. The youngster with AS needs great motivation to not follow his or her own impulses. Learning must be rewarding and not anxiety-provoking.

· The writing assignments of individuals with AS are often repetitious, flit from one subject to the next, and contain incorrect word connotations. These kids frequently do not know the difference between general knowledge and personal ideas and therefore assume the teacher will understand their sometimes abstruse expressions.
 

Emotional Vulnerability—

Kids with ASD have the intelligence to compete in regular education but they often do not have the emotional resources to cope with the demands of the classroom. These kids are easily stressed due to their inflexibility. Self-esteem is low, and they are often very self-critical and unable to tolerate making mistakes. Individuals with AS, especially adolescents, may be prone to depression (a high percentage of depression in adults with AS has been documented). Rage reactions/temper outbursts are common in response to stress/frustration. Kids with AS rarely seem relaxed and are easily overwhelmed when things are not as their rigid views dictate they should be. Interacting with people and coping with the ordinary demands of everyday life take continual Herculean effort.

Programming Suggestions—

· Affect as reflected in the teacher's voice should be kept to a minimum. Be calm, predictable, and matter-of-fact in interactions with the youngster with AS, while clearly indicating compassion and patience. Hans Asperger (1991), the psychiatrist for whom this syndrome is named, remarked that "the teacher who does not understand that it is necessary to teach kids [with AS] seemingly obvious things will feel impatient and irritated" (p.57); Do not expect the youngster with AS to acknowledge that he or she is sad/ depressed. In the same way that they cannot perceive the feelings of others, these kids can also be unaware of their own feelings. They often cover up their depression and deny its symptoms.

· Prevent outbursts by offering a high level of consistency. Prepare these kids for changes in daily routine, to lower stress (see "Resistance to Change" section). Kids with AS frequently become fearful, angry, and upset in the face of forced or unexpected changes.

· Report symptoms to the youngster's therapist or make a mental health referral so that the youngster can be evaluated for depression and receive treatment if this is needed. Because these kids are often unable to assess their own emotions and cannot seek comfort from others, it is critical that depression be diagnosed quickly.

· Teach the kids how to cope when stress overwhelms him or her, to prevent outbursts. Help the youngster write a list of very concrete steps that can be followed when he or she becomes upset (e.g., 1-Breathe deeply three times; 2-Count the fingers on your right hand slowly three times; 3-Ask to see the special education teacher, etc.). Include a ritualized behavior that the youngster finds comforting on the list. Write these steps on a card that is placed in the youngster's pocket so that they are always readily available.

· Educators must be alert to changes in behavior that may indicate depression, such as even greater levels of disorganization, inattentiveness, and isolation; decreased stress threshold; chronic fatigue; crying; suicidal remarks; and so on. Do not accept the youngster's assessment in these cases that he or she is "OK".

· It is critical that adolescents with AS who are mainstreamed have an identified support staff member with whom they can check in at least once daily. This person can assess how well he or she is coping by meeting with him or her daily and gathering observations from other educators.

· Kids with AS who are very fragile emotionally may need placement in a highly structured special education classroom that can offer individualized academic program. These kids require a learning environment in which they see themselves as competent and productive. Accordingly, keeping them in the mainstream, where they cannot grasp concepts or complete assignments, serves only to lower their self-concept, increase their withdrawal, and set the stage for a depressive disorder. In some situations, a personal aide can be assigned to the youngster with AS rather than special education placement. The aide offers affective support, structure and consistent feedback.

· Kids with AS must receive academic assistance as soon as difficulties in a particular area are noted. These kids are quickly overwhelmed and react much more severely to failure than do other kids.

· Be aware that adolescents with AS are especially prone to depression. Social skills are highly valued in adolescence and the student with AS realizes he or she is different and has difficulty forming normal relationships. Academic work often becomes more abstract, and the adolescent with AS finds assignments more difficult and complex. In one case, educators noted that an adolescent with AS was no longer crying over math assignments and therefore believed that he was coping much better. In reality, his subsequent decreased organization and productivity in math was believed to be function of his escaping further into his inner world to avoid the math, and thus he was not coping well at all.

Kids with ASD are so easily overwhelmed by environmental stressors, and have such profound impairment in the ability to form interpersonal relationships, that it is no wonder they give the impression of "fragile vulnerability and a pathetic childishness" (Wing, 1981, p. 117). Everard (1976)wrote that when these youngsters are compared with their non-disabled peers, "one is instantly aware of how different they are and the enormous effort they have to make to live in a world where no concessions are made and where they are expected to conform" (p.2).

Educators can play a vital role in helping kids with AS learn to negotiate the world around them. Because kids with AS are frequently unable to express their fears and anxieties, it is up to significant adults to make it worthwhile for them to leave their safe inner fantasy lives for the uncertainties of the external world. Professionals who work with these youngsters in schools must provide the external structure, organization, and stability that they lack. Using creative teaching strategies with individuals suffering from ASD is critical, not only to facilitate academic success, but also to help them feel less alienated from other human beings and less overwhelmed by the ordinary demands of everyday life.


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

==> Videos for Parents of Children and Teens with ASD
 
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COMMENTS:

Anonymous said...
My son had a bad day yesterday. His worst yet at school. His teacher had them play math bingo. I told her the day before that it would be too stressful for him but he played yesterday. He could not hear her and the kids would not be quiet as he was trying to solve the problem. He had a meltdown and begin threatening people and the class and throwing paper. Today we have a 504 meeting for him. What ideas can I give his teacher to help him in these situations. They are very high stress for him. I was thinking ear plugs and her getting eye to eye with him and giving him the problem or her writing it down and giving it to him as she gives it to the class. He enjoys the game so I dont want to take it away all together.

Anonymous said...
My daughter, 15, had to give a speech in class and this counts a lot to final marks. The first time she tried she started to cry (she was sitting in the front of the class and so hardly anyone saw this) and had to leave the class. She tried to explain to her (new) teacher but was given no help. How do I approach the teacher/school - read somewhere that a good idea would be for my daughter to do her speech in front of 2 classmates she doesn't mind. Thanks.
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By

Help for Grandparents of Aspergers Grandchildren

Q & A with a grandmother of an Aspergers granddaughter:

If your granddaughter has been newly diagnosed, then welcome to the world of Aspergers (high functioning autism). It is a mysterious and sometimes overwhelming world, but it is not one to be afraid of. Even if you are saddened, disappointed or angry about the diagnosis, keep in mind that it’s for the best. The earlier the diagnosis, the earlier the intervention, and the better the prognosis in the long run.

For some grandmothers, the news seems to come right out of the blue. Sure, there were difficulties at school - but then, school isn’t as strict as it used to be. And yes, there were some problems at home, but none of them sounded like anything that “good old-fashioned discipline” couldn’t solve. Why, then, do the mom & dad seem to be clinging to this diagnosis as if it were a life-raft in the high seas? And why are counselors, psychologists, occupational therapists and special education teachers suddenly getting involved?

As a grandmother, you have a lot of questions to sort out. But along with the confusion comes an opportunity to get involved where you are really needed. Kids with Aspergers have a special need in their lives for ‘safe’ people who won’t criticize them or put them down for their differences. They need loving, non-judgmental grandmothers who accept them as they are and make a place for them in their lives. If you can reach out to them, they will treasure your relationship with them for the rest of their lives.

I’ve read articles about Aspergers. But I still don’t understand what it is.

Aspergers is a type of autism, and autism is a neurological disorder that affects the way a person interacts with others and his or her world. It’s not a mental illness, and it is not caused by weak parenting. In its more severe forms, it’s a disorder because it causes disorder in the life of the kid. In its milder forms, it is more of a marked difference from the norm. In our culture, which judges people on the way they interact with others, these disorder-differences can have a profound impact on a person’s life.

You’ve probably heard the mom & dad complaining about the difficulties they’ve had with the kid in the home - obsessive behavior, irrational outbursts, wild fears, and irritability over the smallest issues. These problems are not misbehaviors, but rather the kid’s responses to an inability to comprehend what is going on around them and inside them. Some experts have called it a “mind blindness,” one that causes the person to stumble and bump into complex social situations that they can’t “see.”

Yet by effectively “blinding” the mind to certain aspects of daily life, Aspergers enables the kid’s mind to focus in a way that most of us are incapable of. They feel their feelings more intensely, experience texture, temperature and taste more powerfully, and think their thoughts more single-mindedly. In many ways, this ability to focus is the great gift of Aspergers, and is the reason why a great number people with Aspergers have become gifted scientists, artists and musicians.

It is as if the Asperger brain is born speaking a different language. It can learn our language through careful instruction or self-instruction, but it will always retain its accent. While Asperger adults go on to successful careers and interesting lives, they will always be considered unusual people.

I’ve never heard of it before.

That’s not too surprising. Pediatricians don’t study it in medical school, teachers don’t learn about it in education college, and the mass media rarely covers it. Until the 1980s, the condition didn’t even have a name, even though Hans Asperger’s original work was done in the 1940s. It is only very recently that the condition has received much attention at all. However, as professionals are becoming more informed about the condition, they are discovering that there is a fair amount of Aspergers out there.

You may remember an “odd” kid from your grade-school years - one that had no friends, who was always preoccupied with some obsessive interest that no one else cared about, who said the strangest things at the strangest times. Though the syndrome has only recently been named, these kids have been living and growing up alongside other kids for centuries. Some have become successful and happy as adults despite their undiagnosed problems, teaching themselves over time how to navigate around their deficits. Others have gone on to live lives of confusion and frustration, never understanding why the world didn’t make much sense to them.

With the recognition of Aspergers, we now can give a new generation of Asperger kids a chance at the same kind of life that other kids have.

Great. So how do we fix it?

We can’t fix it. Despite all the marvels of modern science, there are still some problems that can’t be cured. Nobody knows what causes Aspergers, though most scientists acknowledge a genetic factor. So the deficits your grand daughter has can only be understood, minimized and worked around. They will require accommodating on everyone’s part. But in time, with proper programming, the kid’s behavior and understanding of the world should improve.

Specialized therapies for autism disorders are available, but in most cases, the mom & dad must bear the full cost. This can cause tremendous financial strain on the family. In addition, while most regions require specialized programming for Asperger kids, these programs are rarely sufficient for the kid’s needs. So the mom & dad must fill in the gaps with their own home-made programming.

Drug therapies are also sometimes available in cases where extreme behavior needs to be controlled. But these drugs don’t treat the cause of Aspergers. So even if some of the symptoms can be relieved with drugs, the central problems still remain.

A lot of kids have these sorts of difficulties. It’s just a part of growing up, isn’t it? After all, he looks perfectly normal to me.

She is normal. And she has the capacity to grow up to become a wonderful, normal adult - especially now that he has been diagnosed and is receiving special training. But he is normal with a difference.

The deficits that comprise Aspergers are not always readily apparent, especially in milder cases. The kid is usually of average intelligence or higher, yet lacks what are essentially instincts for other kids. If your grand daughter seems “perfectly normal” despite the diagnosis you’ve been told about, then he is probably working very hard to make sure he fits in - and it’s not as easy as it looks.

It is best to treat your granddaughter for what she is - normal. But be prepared to take some advice from those closest to him regarding what is the best way to handle certain situations.

It may not look like much to you, but Aspergers is a cause for concern. It’s not at all the same thing as the sort of developmental delay that some kids experience, and a professional trained in its diagnosis can determine the difference. Certainly misdiagnoses are possible. But in such cases, it’s always wiser to err on the side of caution. The wait-and-see method is risky when there is evidence suggesting a neurological problem.

So what if she doesn’t do what other kids do? She’s advanced for her age.

Un-kidlike behavior doesn’t mean that a kid is “too smart” for play-dough and playgrounds. Even if she is smart, she still needs to learn the skills of play, because play is how kids learn - about things, about life, and about each other. Precociousness is cute and is sometimes a source of pride for grandmothers, but it is also often an indication that there is an underlying problem that needs to be addressed - and the earlier the better.

If Aspergers is genetic, then does that mean we have it too?

You might, or you might not. Usually at least one of the parents has some Asperger qualities to their personality, and so it seems likely that the same might be true of the grandmother generation.

But before you get defensive, remember that Aspergers shouldn’t be regarded as a source of family shame. It’s a difference more than a disorder. And we know it takes all kinds of people to make the world go around. Many famous people are believed to have had Aspergers, including Albert Einstein, Thomas Jefferson, Anton Bruckner, and Andy Warhol. It seems a touch of autism often brings out genius.

And that’s not such a bad thing to have in the family!

What if I don’t believe the diagnosis?

That’s your privilege. But keep in mind that the kid’s mom & dad believe it. They live and work with the kid daily and are in a unique position to notice the deficits. Because they care deeply about that kid’s future, they aren’t concerned about the stigma of a label, as long as it means the kid is eligible for the specialized programming she needs. They have put their pride aside for the sake of the kid and expect the same from the rest of the family.

Consider carefully what could possibly be gained by refusing to believe the diagnosis. Then consider what could be lost. The mom & dad are already living with a great deal more stress than other parents, and they don’t need the added strain of skeptical or judgmental grandmothers. Otherwise you may suddenly be faced with the pain of being unwelcome in your granddaughter’s home.

The child’s mother looks exhausted all the time. Could that be a cause?

It’s more likely an effect. Consider what her life is like: she has to constantly monitor what is going on regarding her Asperger kid, thwart anything that might trigger a meltdown, predict the kid’s reactions in all situations and respond immediately, look for opportunities to teach the kid social behavior without creating a scene, and so on - every minute, every day. So it’s not surprising that she doesn’t feel like sitting down for a cup of tea with you and making small talk!

The truth is that the majority of mothers of Asperger kids struggle with depression. While the special services she will receive over the next few years should help in some ways, she will still be the one to deal with the day-to-day difficulties of raising an unusual kid. For many mothers, this means ceaseless work, often to the exclusion of their own needs. Their physical, mental and emotional exhaustion can have a profound effect on the health and happiness of the entire family.

For this reason, mothers of Asperger kids need those closest to them to give their full, unconditional support, both in words and in action.

I’d like to help out and get involved. But my son and his wife always get defensive no matter what I say.

Your son and daughter-in-law are now so used to defending their kid that it comes as second nature. Give them some time. Once they are more certain of your support, they will be less sensitive.

In the meantime, think carefully before you speak. Choose expressions that suggest sympathy and genuine curiosity, and avoid those that convey criticism. For example, instead of saying ‘He looks perfectly normal to me’, you can say ‘He’s doing really well.’ Phrase ideas as questions, not judgments by saying ‘Have you thought about…’ rather than ‘It’s probably…’.

The most destructive things you can say are those that convey your lack of trust in their ability to parent, your disdain for the diagnosis, and your unwillingness to make accommodations. Here are some real-life examples gathered from mothers of Asperger kids:

‘All you ever do is complain about how hard your life is.’

‘Don’t believe everything those psychologists tell you. He’ll just grow out of it, wait and see!’

‘Everybody’s got to have a problem with a fancy name these days!’

‘He wouldn’t act this way if you didn’t work.’

‘He’s having all these problems because you took him out of school for that home-schooling nonsense.’

‘I managed all by myself with four kids. You’ve just got two, and you can’t handle them!’

‘Just let him spend more time with us. We’ll whip him into shape!’

‘She may act that way at home, but she’s not going to do that in MY house!’

‘There’s nothing wrong with her. You’re making a mountain out of a molehill. Are you sure you’re not the one that needs to see a psychologist?’

Keep in mind that parents of Asperger kids face these hurtful, humiliating attitudes every day - from bus drivers to teachers, doctors to neighbors. Their tolerance level for such opinionated criticism is low, especially since they spend every bit of their energy raising their difficult kid. So avoid insensitive comments at all costs. And if you unwittingly blurt out something the wrong way, be sure to apologize.

So then what can I do for them?

Look for ways to be supportive. Let them know that there is another heart tugging at the load - and it’s yours. Keep on the lookout for articles about Aspergers and send them copies. This shows that you are interested. Ask lots of questions about the special programs the kid is in. Be enthusiastic and optimistic. Let them know you think they’re doing a great job. At other times, be a sympathetic sounding board when they have difficult decisions to make, or when they just need to tell someone what an awful day they’ve had.

If you live close by, consider how much you can help by giving the mom & dad an evening out. If you’re not certain how to handle the kid on your own, then spend some time shadowing the mom & dad to learn how to do it - or offer to babysit after the kid is in bed. Whatever you can do to help will be appreciated.

What does my granddaughter need from me?

She needs to know that you are a safe haven in a bewildering world. It may seem a lot to ask to be flexible with a kid who appears to be misbehaving, but inflexibility will only put distance between you and the kid. If the kid’s manners and mannerisms drive you crazy, ask the mom & dad for suggestions on how to set expectations for your house.

Learn to listen to the kid when she says she doesn’t want to do something. Maybe some kids are happy to spend a couple of hours at a flea market, but think very carefully before dragging an Asperger kid there. Accommodate to her needs, or you run the risk of ruining your time together.

When in doubt, ask the mom & dad for advice.

But in general, just make the decision now that you will spend your time enjoying the kid for what he is - a unique and unusual person. That annoying stubborn streak you see in him is going to be his greatest survival skill. And even though he seems to be afraid of just about anything, recognize that he is like a blind person - it takes tremendous courage for him just to walk through each day. Celebrate his courage and tenacity.

To tell the truth, sometimes I don’t feel comfortable around my granddaughter. I have no idea what to do when she acts in her odd ways.

No one said it would be easy. But most Asperger kids are easiest to handle in one-on-one situations, so look for opportunities to go for walks or spend time in the workshed puttering around together. Tell your granddaughter your stories, especially those that touch on aspects of his life affected by Aspergers. She will love hearing about the time when you were a girl that you blurted out the secret, or how difficult it was for you to learn to tie your shoes. You might tell her about times you wished you knew how to say something, or times when you wanted to be alone. Stories like these can create a powerful bond between you and your grand daughter.

You may discover that all she wants to talk about is his pet subject. Don’t despair. If it’s something you know nothing about, then this is an opportunity to learn something. Search for some magazine articles on the topic so that you always have something new to share together. In time, you may find that you have ideas for helping her expand her interests into other subjects. But even if you do nothing more than listen and share her enthusiasm for her favorite topic in the whole world, your grand daughter will learn that Grandma cares.

When you spend time with her with other people or in public places, it might be helpful to think of yourself as a seeing-eye dog. Remember, she is “blind” in certain ways. Point out trouble-spots and guide her around them, explain social situations that she can’t “see,” and narrate what you are doing as you do it. By doing so, you’ll help her to feel more secure with you, and you’ll be actively participating in her special programming.

One word of caution: watch the emotional levels. Asperger kids often have great difficulty sorting out emotions. If you get angry, the kid could lose control because she is unable to deal with your anger and her own confusion at the same time. Reign in your temper when the kid is clumsy, stubborn, or frustrated. In situations where you feel you really need to be firm, keep your tone calm, your movements slow and even, and tell the kid what you’re going to do before you do it. Get advice from the mom & dad how to deal with little meltdowns so that you are prepared in advance, but do your best to avoid triggering them.

Here are some simple DO’s and DON’T’s to remember when spending time with your granddaughter:
  • Do acknowledge the kid’s expressions of frustration.
  • Do control your anger.
  • Do get involved in the kid’s interests.
  • Do learn what sorts of activities are recommended for the kid.
  • Do praise the kid for his strengths.
  • Do respect the kid’s fears, even if they seem senseless.
  • Don’t compare him with his siblings.
  • Don’t feel helpless - ask for help.
  • Don’t joke, tease, shame, threaten, or demean the kid.
  • Don’t talk to him as if he were stupid.
  • Don’t tell the kid she will outgrow her difficulties.



COMMENTS:

Anonymous said...
I plan to print it out and mail it. THANK YOU, THANK YOU! This is perhaps the most important article I have read on your site. You put into words, exactly why I am going thru with my family, and so desperately what I need for them to understand. This is all too much to go thru alone. And not only is my relationship with some family members broken, but they are missing out on getting to know a really great kid.

Anonymous said...
It is like you step into our life and know exactly what it is like. Do you have any idea how helpful you are? Thank you for yet another amazing article!

Anonymous said...
i feel like this article was written with my concerns, i have been the helicopter mom, helping her daughter for almost 3 years now with all of her therapies and I feel like no one ever gets what I am trying to say, so thanks for such a great article.

Anonymous said...
Thank you so much for the wonderful articles you share. So often the outside world just doesn't "get it". Thank you for making it easier to help them understand.

Anonymous said...
This is very interesting & I put in a comment before but don't see it with the other comments. I know that my son & grandson both have this & all of this helps me understand them better! Lord bless you!

Anonymous said...
If you ever need a volunteer or someone to help at one of your lectures/seminars I would love to do that. I want to get more involved with Aspergers/Autism. I just don't know how or what to do. I have worked 35 years in the healthcare field and now at 53 I am retired. YEA!!!! Aspergers is my passion now. Thank you so much for all your help and great you-tube videos and newsletters. I think I am about done with your you-tube videos. I think I will be an expert when I'm done with all your info. Thanks again for all you do for the kids, parents and GRANDPARENTS (me) struggling to make sense of all this. You are amazing. Someday if it would ever be possible I would pay you an office visit to just meet Kinser. I know you are very busy but for some reason I would just love for you to meet him. I think there is just something unique and special about him. I know you said you are not at this time taking new patients so I'm not asking for that at all. Although if you ever do accept new patients please let me know. Thanks again for everything.

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