Thursday, April 22, 2010
Aspergers Children Being Bullied
Kids with Aspergers are ideal targets for bullying. Aspergers kids tend to be socially isolated and awkward in conversations and physical coordination. An Aspie youngster often has interests that other kids consider odd, or may have unusual verbal or physical habits. Most rewarding, from a bully’s perspective, is how easily many Aspergers kids “meltdown” and lose control when under pressure.
Approximately 90 percent of Aspergers kids are bullied – some sources suggest the number is closer to 100 percent. Adults with Aspergers often relate how helpless, angry and alone schoolyard bullying made them feel, and how the effects of bullying followed them into their adult lives.
Talking about Bullying with Aspergers Kids—
Kids with Aspergers have enough difficulty interacting at school without the added pressure of bullying. Unfortunately their problems understanding social conventions make it difficult for Aspie kids to explain that they are being bullied.
Moms and dads should talk to their kids about bullying, explaining that bullying can include teasing, intimidation, and threats as well as assault. Social stories (educational tales of common social experiences) can help explain what constitutes intimidation and unpleasant teasing. Teasing is especially problematic for Aspergers kids, as they may not differentiate between friendly banter and hurtful teasing.
Aspergers kids need to understand that all forms of bullying are wrong, not just assault and physical intimidation. A “friend” threatening not to be friends in order to manipulate an Aspie youngster into doing something wrong or illegal is bullying just as much as the playground thug who hits and kicks.
Helping Aspergers Kids understand Bullying—
Role-playing can also help Aspie kids identify bullying. If the Aspergers youngster has a neuro-typical sibling he or she may be able to help shed some light on bullying – after all, kids have a closer connection to today’s playground politics than adults.
Scenes from television, movies and video games provide plenty of opportunities to talk about bullying. Moms and dads and kids can discuss how the bullied character handled the situation, and whether he or she handled it appropriately or not. Both parent and youngster can share what they would do in a similar situation.
Kids with Aspergers may stay silent about bullying for a number of reasons, including:
• Threats and intimidation from the bully.
• Thinking that they somehow deserve bullying
• Thinking no one will believe them
• Shame
• Not wanting to worry moms and dads
• Not wanting to be seen as tattletales
• Confusion
Moms and dads and educators should make it quite clear that there is never a good reason to bully, and that the correct and safest thing to do is to tell an adult the youngster trusts – whether a parent, teacher or counselor. The traditional belief that ignoring bullying makes bullies stop is simply not true. Many schools now have no tolerance policies for bullying, but those policies can only be enforced if educators and school staff know bullying is occurring.
Cyber-bullying and “Stealth Bullying”—
Moms and dads should be aware of two other types of bullying that might affect their kids. Cyber-bullying is the use of the Internet, instant messaging and other online venues by school bullies to taunt, threaten or shame kids.
“Stealth bullying” is a common tactic used against Aspergers kids. Classmates quickly learn what buttons they need to press to trigger an outburst from a youngster with Aspergers. The bullies can manipulate the Aspergers youngster into disrupting class, and have the added payoff of watching their victim get into trouble for behavior they triggered.
Educators may need to keep an eye out for stealth bullying in the classroom and on the playground, although it can be difficult to detect. It may help to explain to educators that if an Aspergers youngster has a “meltdown” there is almost always a reason, even if the reason doesn’t make sense to neuro-typical minds.
An email from a mother re: Aspergers daughter being bullied—
Hello Mr. Hutten,
I would like to share with you and you can feel free to share with others something wonderful that happened to our family yesterday. After almost a year and half of being bullied, harassed and assaulted on the school bus, our 13 year old Aspie daughter had her day in court with the perpetrator (another 13 year old bully). My daughter was terrified to testify, but I assured her that her family was there to protect her. We also were blessed to have a witnessed to one of the horrific beatings that my daughter endured come forward. She was terrified as well. The States Atty's office in Upper Marlboro, Maryland brought forth the case. It was a long process, without any assistance from the school system. Anyway, to make a long story short, the bully was found guilty on all three charges of second degree assault. The judge remanded her into custody on the spot. She was taken away in handcuffs. There was high drama in the courtroom. It had been such a long and lonely process, I did not know what to expect, but imagine my daughter witnessing the detention and handcuffing of her tormentor in front of her...it was amazing. While it is not a joyous occasion to see a 13 year old child in handcuffs, I am blinded by the many, many long months of harassment and assaults that my child suffered and continues to suffer. This is a partial victory for my daughter Amina. Please include this in your newsletter for others to see. The Justice System can and does work. Thanks, Kim
My Aspergers Child
Approximately 90 percent of Aspergers kids are bullied – some sources suggest the number is closer to 100 percent. Adults with Aspergers often relate how helpless, angry and alone schoolyard bullying made them feel, and how the effects of bullying followed them into their adult lives.
Talking about Bullying with Aspergers Kids—
Kids with Aspergers have enough difficulty interacting at school without the added pressure of bullying. Unfortunately their problems understanding social conventions make it difficult for Aspie kids to explain that they are being bullied.
Moms and dads should talk to their kids about bullying, explaining that bullying can include teasing, intimidation, and threats as well as assault. Social stories (educational tales of common social experiences) can help explain what constitutes intimidation and unpleasant teasing. Teasing is especially problematic for Aspergers kids, as they may not differentiate between friendly banter and hurtful teasing.
Aspergers kids need to understand that all forms of bullying are wrong, not just assault and physical intimidation. A “friend” threatening not to be friends in order to manipulate an Aspie youngster into doing something wrong or illegal is bullying just as much as the playground thug who hits and kicks.
Helping Aspergers Kids understand Bullying—
Role-playing can also help Aspie kids identify bullying. If the Aspergers youngster has a neuro-typical sibling he or she may be able to help shed some light on bullying – after all, kids have a closer connection to today’s playground politics than adults.
Scenes from television, movies and video games provide plenty of opportunities to talk about bullying. Moms and dads and kids can discuss how the bullied character handled the situation, and whether he or she handled it appropriately or not. Both parent and youngster can share what they would do in a similar situation.
Kids with Aspergers may stay silent about bullying for a number of reasons, including:
• Threats and intimidation from the bully.
• Thinking that they somehow deserve bullying
• Thinking no one will believe them
• Shame
• Not wanting to worry moms and dads
• Not wanting to be seen as tattletales
• Confusion
Moms and dads and educators should make it quite clear that there is never a good reason to bully, and that the correct and safest thing to do is to tell an adult the youngster trusts – whether a parent, teacher or counselor. The traditional belief that ignoring bullying makes bullies stop is simply not true. Many schools now have no tolerance policies for bullying, but those policies can only be enforced if educators and school staff know bullying is occurring.
Cyber-bullying and “Stealth Bullying”—
Moms and dads should be aware of two other types of bullying that might affect their kids. Cyber-bullying is the use of the Internet, instant messaging and other online venues by school bullies to taunt, threaten or shame kids.
“Stealth bullying” is a common tactic used against Aspergers kids. Classmates quickly learn what buttons they need to press to trigger an outburst from a youngster with Aspergers. The bullies can manipulate the Aspergers youngster into disrupting class, and have the added payoff of watching their victim get into trouble for behavior they triggered.
Educators may need to keep an eye out for stealth bullying in the classroom and on the playground, although it can be difficult to detect. It may help to explain to educators that if an Aspergers youngster has a “meltdown” there is almost always a reason, even if the reason doesn’t make sense to neuro-typical minds.
An email from a mother re: Aspergers daughter being bullied—
Hello Mr. Hutten,
I would like to share with you and you can feel free to share with others something wonderful that happened to our family yesterday. After almost a year and half of being bullied, harassed and assaulted on the school bus, our 13 year old Aspie daughter had her day in court with the perpetrator (another 13 year old bully). My daughter was terrified to testify, but I assured her that her family was there to protect her. We also were blessed to have a witnessed to one of the horrific beatings that my daughter endured come forward. She was terrified as well. The States Atty's office in Upper Marlboro, Maryland brought forth the case. It was a long process, without any assistance from the school system. Anyway, to make a long story short, the bully was found guilty on all three charges of second degree assault. The judge remanded her into custody on the spot. She was taken away in handcuffs. There was high drama in the courtroom. It had been such a long and lonely process, I did not know what to expect, but imagine my daughter witnessing the detention and handcuffing of her tormentor in front of her...it was amazing. While it is not a joyous occasion to see a 13 year old child in handcuffs, I am blinded by the many, many long months of harassment and assaults that my child suffered and continues to suffer. This is a partial victory for my daughter Amina. Please include this in your newsletter for others to see. The Justice System can and does work. Thanks, Kim
My Aspergers Child
Monday, April 19, 2010
Love and Aspergers
He's gentle, unworldly, highly attentive and charmingly old-fashioned. The catch? The very things that make John so attractive to Rhonda are symptoms of Aspergers.
Rhonda Hennis and John Newsom sit tilted towards one other, laughing a lot and disappearing down the occasional alley of in-jokes, as couples do when they're still in that early, besotted stage.
John has just arrived at Rhonda's home in Hove and they're clearly delighted by the prospect of the next few days together. As always, John has switched off his mobile phone because, as he puts it, 'my time here is with Rhonda'. They won't see anyone else - John has no friends of his own and doesn't feel comfortable socializing - but plan to eat lots of chocolate, walk and watch television. 'We spend a lot of time feeling smug,' says Rhonda, 'because we see other couples who don't look very happy.'
In a few days, though, John will drive back to Wickham, Hampshire, 50 miles away, where he lives alone and works as a computer programmer. This will always be the case. Despite meeting five years ago, they won't 'progress' as other couples do. They'll neither live together nor have kids. Although there's only a year between them, at 39 John is so gangly, gawky, boyish and cute that he could be ten years younger than he is.
Yet Rhonda - who had a youngster at 19 and has two marriages behind her - is confident that few women could put up with him. 'God, he's so gorgeous he could have anyone - but not for long,' she says, laughing. 'Three or four months max… then, when the conversation turns to homes and babies and bank accounts, he'd be gone!' The two burst into laughter.
It wasn't always like this. The couple met through internet dating and the first stage of their relationship was fiery and fraught. To Rhonda, John was 'a puzzle'. He'd plainly state that their blissful weekends were enough for him, that he'd never live with her or even move nearer. Rhonda frequently found him selfish, cold and distant. John found Rhonda hard work, demanding and 'screechy'.
Ultimately, only one thing allowed them to start again from scratch - they uncovered the reason for John's 'insensitivity', his aloofness, the fact that he could see no future with Rhonda nor seemed to want one: John has Aspergers syndrome (AS).
Such a late diagnosis is not uncommon. Aspergers - a developmental condition that falls within the autism spectrum - was identified more than 60 years ago but became a standard diagnosis only in 1992 when it entered the World Health Organization’s diagnostic manual. As a result, the majority of adults with the syndrome almost certainly grew up without knowing they had it.
Estimates vary enormously as to the prevalence, but one in 100 individuals is thought to be on the autism spectrum, and it is more common in males by a ratio of nine to one. Individuals with AS normally have above-average intelligence but great difficulties with empathy, communication and social interaction.
Individuals with Aspergers struggle to understand the unwritten social rules that help most of us act and speak appropriately. They find it hard to decipher figures of speech, facial expressions and tones of voice, and are frequently (but unintentionally) concise and literal to the point of rudeness. Since the 'real world' becomes an extremely stressful place, many retreat into their own safe haven of routine, solitude and obsessive special interests.
Today Aspergers is likely to be recognized in a youngster, and his school will be told he needs special support. Twenty years ago, however, he'd be the 'geek' who didn't quite fit but was left to get on with it. And that struggle has continued into adulthood. For someone with AS, the minefield of relationships, marriage and parenthood can be the hardest part of all.
Louise Mason manages the National Autistic Society (NAS) helpline and confirms that more calls are coming from couples who have recognized Aspergers in their relationship.
'When I started six years ago most of our calls were made by parents about their kids,' she says. 'Now we get more adult-related calls than youngster-related.' As Aspergers seems to run in families, many women identify it in their husbands - or their husbands see it in themselves - only after their youngster has been diagnosed and they've read the literature. 'They call in absolute shock,' says Mason. 'Often they've been experiencing difficulties for years without knowing why. There's no way around it: Aspergers can be very hard to live with.'
Maxine Smith, the author of Aspergers in Love (Jessica Kingsley, £14.95), is one of the few counselors to work specifically with couples affected by AS. Her surveys and questionnaires from the past decade suggest that 75 per cent of such couples seek counseling. 'I'd almost say AS was a "relationship disorder",' she says. 'It affects communication, interaction and the ability to empathize. Any research will tell you they're the key ingredients for a successful relationship.' In Smith's experience - and desperate clients come from as far as Japan, New Zealand and Canada - Aspergers relationships follow a common pattern.
'A huge number seem to meet on dating websites,' she says. 'For someone with Aspergers it's the perfect route.' Where once many individuals with AS were effectively barred from the dating game, the internet now provides the perfect point of entry (it has, as Smith puts it 'opened the floodgates').
Bypassing the enormous challenges involved in chatting someone up, it allows you to make a checklist and then select according to criteria. Although many individuals with Aspergers are unemployed or underemployed, others are at the top of their profession. 'On paper they look amazing,' says Smith. 'Doctors, IT consultants, engineers, solicitors… They could be in their forties but have never married - so no baggage. The internet also allows them to build a rapport by email,' she continues. 'When they meet, women are often very charmed by this polite, gentle man with an old-fashioned appeal.'
This was certainly true for Rhonda who found John completely different to anyone she had known. 'At the end of our first date he kissed my cheek and shook my hand,' she recalls. 'So different to all the guys that ply you with rioja. John seemed so untouched by needless fashion and peer pressure - I thought he was a Buddhist!'
However, in Smith's experience, this appeal can wear thin. 'Women fall in love and want to nurture this unworldly, slightly vulnerable man and help him grow up. As the relationship settles, though, they often find their own emotional needs aren't being met.
'Someone with Aspergers probably has good intentions,' she goes on. 'He wants to make her happy but can't read the signs. At the beginning of the courtship the woman could become his obsession and she has probably never experienced such attention. Five years down the line, when he has focused on something else and returns from work, yet again forgets to say hello and goes to the garage to take the car apart, things are very different. Women often say to me, "He's either got Aspergers or he's the most selfish man on the planet."'
Another problem can be the isolation. Individuals with Aspergers frequently have sensory difficulties - loud noise, strong smells and bright lights can be almost painful. This coupled with difficulties in social interaction, means that parties, family gatherings and big birthdays drop off the radar.
'I once saw a couple in their eighties who, after 50 years of marriage, realized what the problem was,' says Smith. 'They decided to stay together, but she bought a cottage up the road and he visited for meals. She could have friends and family over and he had space for his routine and interests. Quite a few couples decide to stay together but live apart.'
Jayne Jones, an accountant from Oxford, tried this following the diagnosis of her husband Steven, an IT consultant, six years ago. Steven learnt about Aspergers through a television program while he was off work with stress. He subsequently saw a specialist who placed him high on the Aspergers scale.
'We got together in 1995 and he'd always been very unusual,' says Jayne. 'There are lots of positives about Aspergers. I like its straightforwardness. There's no game-playing. Steven was the first person I had met who just let individuals be themselves. Most men want you to be a bit more like this or more like that. Steven just accepts you. He's also very intelligent - he has an IQ of over 150 - and very funny.'
However, Aspergers was hard to live with. 'He did lock himself in the room with the computer,' she says. 'We were under the same roof but not together. Rarely did we share the preparation and clearing away of meals because Steven couldn't stand the noise of cutlery and crockery.'
When their kids were born - Luke is nine and Beth is seven - Steven found the chaos of family life even more difficult. 'It wasn't predictable and calm enough. Family holidays we gave up on,' she says. 'He would try his best but by day three, without his familiarity, his routine, his computer; you could see all his systems shutting down. Then he'd spend each day with a large crate of beer in front of the television while I took the kids out. Steven drank vast quantities to cope with Aspergers - that was another problem.'
When Steven moved out, the plan had been that they would remain a couple, but in the end this didn't work out. 'He drank far less and was clearly so much happier in his own space,' says Jayne. 'He would spend a few hours with us, then go home to his bolthole and not talk to anyone for 24 hours. In the end, I couldn't cope with the massive periods of time alone.' The couple divorced last year.
Conventional counseling isn't recommended for Aspergers couples - in fact, it frequently makes things worse. 'Counseling works on empathy,' says Maxine Smith, 'helping you understand each other's point of view. That won't happen if you have Aspergers. You might be told to spend ten minutes a day talking about your emotions. Someone with Aspergers can't do it, feels pressurized and disappointment sets in.' For this reason, the NAS has a (small) database of couples counselors who specialize in Aspergers - of which Smith is one.
There are many strategies that can help. One is to write things down instead of saying them. Another is for the non-Aspergers half in the relationship to spell things out in no uncertain terms. ('I am feeling sad and would like a hug'), rather than hope their partner will read the cues. However, the key is understanding the Aspergers label, accepting its limitations and adjusting expectations. 'It's almost like blaming it on the Aspergers,' says Smith.
The diagnosis that saved John and Rhonda almost happened by accident - Rhonda got a job working with ASpire, a charity that supports adults with Aspergers. The more she learnt, the more she recognized in John. 'At first, I thought it was just a mad, crazy Rhonda idea,' he says. 'But as I researched it, the similarities became too great to ignore.'
Learning about Aspergers, he says, was 'life-changing'. Suddenly what Rhonda describes as his 'isolated, biscuit-eating life' made sense. John had been bullied at school and gone through university with no friends at all. He'd had only two jobs in his life doing the same thing and two very short-lived relationships (the first at 31). 'From an early age you try to join the world, but gradually, with rejection and not being able to understand social situations, it becomes too taxing,' he says. 'I wanted relationships with women but didn't have the confidence, the tools or the means.'
In Rhonda, John has found the perfect partner. She works with AS adults for a living and now understands his thought processes and almost speaks his language. She can foresee stressful situations, accepts his frequent need to be alone and rarely asks for more than John can give.
In return, she has a charming, quirky, logical and attentive partner who is still touchingly old-fashioned - he always opens doors for her, carries her shopping and whips off her glasses to clean them if he sees they are dirty. Most importantly, the two clearly love each other's company, share the same sense of humor - and have co-written a book, Asperger Syndrome - A Love Story (Jessica Kingsley, £12.99), to show that happy endings are possible, even if they're not quite the endings originally envisaged.
There are no plans of marriage or moving in, and John certainly doesn't think he could cope with kids. But they seem like soul mates. 'With Rhonda, I get acceptance and understanding,' says John. 'I don't necessarily want to join the rest of the world - but I'd like someone to join me in mine. I'd like to know at the end of my life that there's been one person who got me. That's what Rhonda does for me.'
My Aspergers Child
Rhonda Hennis and John Newsom sit tilted towards one other, laughing a lot and disappearing down the occasional alley of in-jokes, as couples do when they're still in that early, besotted stage.
John has just arrived at Rhonda's home in Hove and they're clearly delighted by the prospect of the next few days together. As always, John has switched off his mobile phone because, as he puts it, 'my time here is with Rhonda'. They won't see anyone else - John has no friends of his own and doesn't feel comfortable socializing - but plan to eat lots of chocolate, walk and watch television. 'We spend a lot of time feeling smug,' says Rhonda, 'because we see other couples who don't look very happy.'
In a few days, though, John will drive back to Wickham, Hampshire, 50 miles away, where he lives alone and works as a computer programmer. This will always be the case. Despite meeting five years ago, they won't 'progress' as other couples do. They'll neither live together nor have kids. Although there's only a year between them, at 39 John is so gangly, gawky, boyish and cute that he could be ten years younger than he is.
Yet Rhonda - who had a youngster at 19 and has two marriages behind her - is confident that few women could put up with him. 'God, he's so gorgeous he could have anyone - but not for long,' she says, laughing. 'Three or four months max… then, when the conversation turns to homes and babies and bank accounts, he'd be gone!' The two burst into laughter.
It wasn't always like this. The couple met through internet dating and the first stage of their relationship was fiery and fraught. To Rhonda, John was 'a puzzle'. He'd plainly state that their blissful weekends were enough for him, that he'd never live with her or even move nearer. Rhonda frequently found him selfish, cold and distant. John found Rhonda hard work, demanding and 'screechy'.
Ultimately, only one thing allowed them to start again from scratch - they uncovered the reason for John's 'insensitivity', his aloofness, the fact that he could see no future with Rhonda nor seemed to want one: John has Aspergers syndrome (AS).
Such a late diagnosis is not uncommon. Aspergers - a developmental condition that falls within the autism spectrum - was identified more than 60 years ago but became a standard diagnosis only in 1992 when it entered the World Health Organization’s diagnostic manual. As a result, the majority of adults with the syndrome almost certainly grew up without knowing they had it.
Estimates vary enormously as to the prevalence, but one in 100 individuals is thought to be on the autism spectrum, and it is more common in males by a ratio of nine to one. Individuals with AS normally have above-average intelligence but great difficulties with empathy, communication and social interaction.
Individuals with Aspergers struggle to understand the unwritten social rules that help most of us act and speak appropriately. They find it hard to decipher figures of speech, facial expressions and tones of voice, and are frequently (but unintentionally) concise and literal to the point of rudeness. Since the 'real world' becomes an extremely stressful place, many retreat into their own safe haven of routine, solitude and obsessive special interests.
Today Aspergers is likely to be recognized in a youngster, and his school will be told he needs special support. Twenty years ago, however, he'd be the 'geek' who didn't quite fit but was left to get on with it. And that struggle has continued into adulthood. For someone with AS, the minefield of relationships, marriage and parenthood can be the hardest part of all.
Louise Mason manages the National Autistic Society (NAS) helpline and confirms that more calls are coming from couples who have recognized Aspergers in their relationship.
'When I started six years ago most of our calls were made by parents about their kids,' she says. 'Now we get more adult-related calls than youngster-related.' As Aspergers seems to run in families, many women identify it in their husbands - or their husbands see it in themselves - only after their youngster has been diagnosed and they've read the literature. 'They call in absolute shock,' says Mason. 'Often they've been experiencing difficulties for years without knowing why. There's no way around it: Aspergers can be very hard to live with.'
Maxine Smith, the author of Aspergers in Love (Jessica Kingsley, £14.95), is one of the few counselors to work specifically with couples affected by AS. Her surveys and questionnaires from the past decade suggest that 75 per cent of such couples seek counseling. 'I'd almost say AS was a "relationship disorder",' she says. 'It affects communication, interaction and the ability to empathize. Any research will tell you they're the key ingredients for a successful relationship.' In Smith's experience - and desperate clients come from as far as Japan, New Zealand and Canada - Aspergers relationships follow a common pattern.
'A huge number seem to meet on dating websites,' she says. 'For someone with Aspergers it's the perfect route.' Where once many individuals with AS were effectively barred from the dating game, the internet now provides the perfect point of entry (it has, as Smith puts it 'opened the floodgates').
Bypassing the enormous challenges involved in chatting someone up, it allows you to make a checklist and then select according to criteria. Although many individuals with Aspergers are unemployed or underemployed, others are at the top of their profession. 'On paper they look amazing,' says Smith. 'Doctors, IT consultants, engineers, solicitors… They could be in their forties but have never married - so no baggage. The internet also allows them to build a rapport by email,' she continues. 'When they meet, women are often very charmed by this polite, gentle man with an old-fashioned appeal.'
This was certainly true for Rhonda who found John completely different to anyone she had known. 'At the end of our first date he kissed my cheek and shook my hand,' she recalls. 'So different to all the guys that ply you with rioja. John seemed so untouched by needless fashion and peer pressure - I thought he was a Buddhist!'
However, in Smith's experience, this appeal can wear thin. 'Women fall in love and want to nurture this unworldly, slightly vulnerable man and help him grow up. As the relationship settles, though, they often find their own emotional needs aren't being met.
'Someone with Aspergers probably has good intentions,' she goes on. 'He wants to make her happy but can't read the signs. At the beginning of the courtship the woman could become his obsession and she has probably never experienced such attention. Five years down the line, when he has focused on something else and returns from work, yet again forgets to say hello and goes to the garage to take the car apart, things are very different. Women often say to me, "He's either got Aspergers or he's the most selfish man on the planet."'
Another problem can be the isolation. Individuals with Aspergers frequently have sensory difficulties - loud noise, strong smells and bright lights can be almost painful. This coupled with difficulties in social interaction, means that parties, family gatherings and big birthdays drop off the radar.
'I once saw a couple in their eighties who, after 50 years of marriage, realized what the problem was,' says Smith. 'They decided to stay together, but she bought a cottage up the road and he visited for meals. She could have friends and family over and he had space for his routine and interests. Quite a few couples decide to stay together but live apart.'
Jayne Jones, an accountant from Oxford, tried this following the diagnosis of her husband Steven, an IT consultant, six years ago. Steven learnt about Aspergers through a television program while he was off work with stress. He subsequently saw a specialist who placed him high on the Aspergers scale.
'We got together in 1995 and he'd always been very unusual,' says Jayne. 'There are lots of positives about Aspergers. I like its straightforwardness. There's no game-playing. Steven was the first person I had met who just let individuals be themselves. Most men want you to be a bit more like this or more like that. Steven just accepts you. He's also very intelligent - he has an IQ of over 150 - and very funny.'
However, Aspergers was hard to live with. 'He did lock himself in the room with the computer,' she says. 'We were under the same roof but not together. Rarely did we share the preparation and clearing away of meals because Steven couldn't stand the noise of cutlery and crockery.'
When their kids were born - Luke is nine and Beth is seven - Steven found the chaos of family life even more difficult. 'It wasn't predictable and calm enough. Family holidays we gave up on,' she says. 'He would try his best but by day three, without his familiarity, his routine, his computer; you could see all his systems shutting down. Then he'd spend each day with a large crate of beer in front of the television while I took the kids out. Steven drank vast quantities to cope with Aspergers - that was another problem.'
When Steven moved out, the plan had been that they would remain a couple, but in the end this didn't work out. 'He drank far less and was clearly so much happier in his own space,' says Jayne. 'He would spend a few hours with us, then go home to his bolthole and not talk to anyone for 24 hours. In the end, I couldn't cope with the massive periods of time alone.' The couple divorced last year.
Conventional counseling isn't recommended for Aspergers couples - in fact, it frequently makes things worse. 'Counseling works on empathy,' says Maxine Smith, 'helping you understand each other's point of view. That won't happen if you have Aspergers. You might be told to spend ten minutes a day talking about your emotions. Someone with Aspergers can't do it, feels pressurized and disappointment sets in.' For this reason, the NAS has a (small) database of couples counselors who specialize in Aspergers - of which Smith is one.
There are many strategies that can help. One is to write things down instead of saying them. Another is for the non-Aspergers half in the relationship to spell things out in no uncertain terms. ('I am feeling sad and would like a hug'), rather than hope their partner will read the cues. However, the key is understanding the Aspergers label, accepting its limitations and adjusting expectations. 'It's almost like blaming it on the Aspergers,' says Smith.
The diagnosis that saved John and Rhonda almost happened by accident - Rhonda got a job working with ASpire, a charity that supports adults with Aspergers. The more she learnt, the more she recognized in John. 'At first, I thought it was just a mad, crazy Rhonda idea,' he says. 'But as I researched it, the similarities became too great to ignore.'
Learning about Aspergers, he says, was 'life-changing'. Suddenly what Rhonda describes as his 'isolated, biscuit-eating life' made sense. John had been bullied at school and gone through university with no friends at all. He'd had only two jobs in his life doing the same thing and two very short-lived relationships (the first at 31). 'From an early age you try to join the world, but gradually, with rejection and not being able to understand social situations, it becomes too taxing,' he says. 'I wanted relationships with women but didn't have the confidence, the tools or the means.'
In Rhonda, John has found the perfect partner. She works with AS adults for a living and now understands his thought processes and almost speaks his language. She can foresee stressful situations, accepts his frequent need to be alone and rarely asks for more than John can give.
In return, she has a charming, quirky, logical and attentive partner who is still touchingly old-fashioned - he always opens doors for her, carries her shopping and whips off her glasses to clean them if he sees they are dirty. Most importantly, the two clearly love each other's company, share the same sense of humor - and have co-written a book, Asperger Syndrome - A Love Story (Jessica Kingsley, £12.99), to show that happy endings are possible, even if they're not quite the endings originally envisaged.
There are no plans of marriage or moving in, and John certainly doesn't think he could cope with kids. But they seem like soul mates. 'With Rhonda, I get acceptance and understanding,' says John. 'I don't necessarily want to join the rest of the world - but I'd like someone to join me in mine. I'd like to know at the end of my life that there's been one person who got me. That's what Rhonda does for me.'
My Aspergers Child
Friday, April 16, 2010
Aspergers Children and Crisis Intervention
Some quick pointers regarding your Aspergers child and crisis intervention. Please keep the following in mind:
1. Allow the youngster, whenever possible, to make choices as you move through crisis intervention steps; however, do not offer choices if they would compromise what you are trying to achieve.
2. Have a calm voice and demeanor, but convey firmness.
3. Help the youngster to see you as a problem solver. Let him know that you are aware of how difficult the situation is for him. Tell him your job is to help with this difficulty. Explain clearly that your help does not mean avoiding the situation or doing it for the youngster, but rather helping him to do it. E.g., "You have a problem and I am here to help you solve it."
4. Ignore or interrupt irrelevant comments. Respond with: "That doesn't make sense, I can't pay attention to that," or "That is off the topic, so I will have to ignore what you are saying," or "I can't help you with your problem while you are talking nonsense."
5. Keep your goal in mind as you go through crisis intervention steps: creating new rules for responding in the future.
6. Make it clear to the youngster that you are in control; don't plead or make second requests.
7. Practice/rehearse what has been decided as the appropriate solution to the problem; this may involve completing an activity or sabotage, accepting a change, or restoring the environment after a meltdown.
8. Say what you mean and mean what you say at all times during the crisis.
9. Stay on topic during the crisis. The youngster may bring up extraneous or unrelated issues to try to justify his behavior.
10. Use the steps in My Aspergers Child eBook for specific crisis intervention strategies.
1. Allow the youngster, whenever possible, to make choices as you move through crisis intervention steps; however, do not offer choices if they would compromise what you are trying to achieve.
2. Have a calm voice and demeanor, but convey firmness.
3. Help the youngster to see you as a problem solver. Let him know that you are aware of how difficult the situation is for him. Tell him your job is to help with this difficulty. Explain clearly that your help does not mean avoiding the situation or doing it for the youngster, but rather helping him to do it. E.g., "You have a problem and I am here to help you solve it."
4. Ignore or interrupt irrelevant comments. Respond with: "That doesn't make sense, I can't pay attention to that," or "That is off the topic, so I will have to ignore what you are saying," or "I can't help you with your problem while you are talking nonsense."
5. Keep your goal in mind as you go through crisis intervention steps: creating new rules for responding in the future.
6. Make it clear to the youngster that you are in control; don't plead or make second requests.
7. Practice/rehearse what has been decided as the appropriate solution to the problem; this may involve completing an activity or sabotage, accepting a change, or restoring the environment after a meltdown.
8. Say what you mean and mean what you say at all times during the crisis.
9. Stay on topic during the crisis. The youngster may bring up extraneous or unrelated issues to try to justify his behavior.
10. Use the steps in My Aspergers Child eBook for specific crisis intervention strategies.
Monday, April 12, 2010
Aspergers Children and Tantrums
Moms and dads expect tantrums from 2-year-olds, but angry outbursts don't necessarily stop after the toddler years. Older Aspergers children sometimes have trouble handling anger and frustration, too.
Some Aspergers children only lose their cool on occasion. But others seem to have a harder time when things don't go their way. Children who tend to have strong reactions by nature will need more help from moms and dads to manage their tempers.
Controlling outbursts can be difficult for Aspergers children — and helping them learn to do so is a tough job for the moms and dads who love them. Try to be patient and positive, and know that these skills take time to develop and that just about every youngster can improve with the right coaching.
Why Aspergers children Have Tantrums—
Tantrums range from whining and crying to screaming, kicking, hitting, and breath holding. They're equally common in boys and girls and usually occur between the ages of 1 to 3.
Children' temperaments vary dramatically — so some children may experience regular tantrums, whereas others have them rarely. They're a normal part of development and don't have to be seen as something negative. Unlike adults, Aspergers children don't have the same inhibitions or control.
Imagine how it feels when you're determined to program your DVD player and aren't able to do it, no matter how hard you try, because you can't understand how. It's pretty frustrating — do you swear, throw the manual, walk away, and slam the door on your way out? That's the adult version of a tantrum. Toddlers are also trying to master their world and when they aren't able to accomplish a task, they turn to one of the only tools at their disposal for venting frustration — a tantrum.
Several basic causes of tantrums are familiar to moms and dads everywhere: The youngster is seeking attention or is tired, hungry, or uncomfortable. In addition, tantrums are often the result of child’s frustration with the world — they can't get something (for example, an object or a parent) to do what they want. Frustration is an unavoidable part of their lives as they learn how people, objects, and their own bodies work.
Tantrums are common during the second year of life, a time when young people are acquiring language. Toddlers generally understand more than they can express. Imagine not being able to communicate your needs to someone — a frustrating experience that may precipitate a tantrum. As language skills improve, tantrums tend to decrease.
Another task toddlers are faced with is an increasing need for autonomy. Toddlers want a sense of independence and control over the environment — more than they may be capable of handling. This creates the perfect condition for power struggles as a youngster thinks "I can do it myself" or "I want it, give it to me." When Aspergers children discover that they can't do it and can't have everything they want, the stage is set for a tantrum.
Avoiding Tantrums—
The best way to deal with tantrums is to avoid them in the first place, whenever possible. Here are some strategies that may help:
• Consider the request carefully when your youngster wants something. Is it outrageous? Maybe it isn't. Choose your battles; accommodate when you can.
• Distract your youngster. Take advantage of your little one's short attention span by offering a replacement for the coveted object or beginning a new activity to replace the frustrating or forbidden one. Or simply change the environment. Take your toddler outside or inside or move to a different room.
• Keep off-limits objects out of sight and out of reach to make struggles less likely to develop over them. Obviously, this isn't always possible, especially outside of the home where the environment can't be controlled.
• Know your youngster's limits. If you know your toddler is tired, it's not the best time to go grocery shopping or try to squeeze in one more errand.
• Make sure your youngster isn't acting up simply because he or she isn't getting enough attention. To a youngster, negative attention (a parent's response to a tantrum) is better than no attention at all. Try to establish a habit of catching your youngster being good ("time in"), which means rewarding your little one with attention for positive behavior.
• Set the stage for success when Aspergers children are playing or trying to master a new task. Offer age-appropriate toys and games. Also, start with something simple before moving on to more challenging tasks.
• Try to give toddlers some control over little things. This may fulfill the need for independence and ward off tantrums. Offer minor choices such as "Do you want orange juice or apple juice?" or "Do you want to brush your teeth before or after taking a bath?" This way, you aren't asking "Do you want to brush your teeth now?" — which inevitably will be answered "no."
If a safety issue is involved and a toddler repeats the forbidden behavior after being told to stop, use a time-out or hold the youngster firmly for several minutes. Be consistent. Aspergers children must understand that you are inflexible on safety issues.
Tantrum Tactics—
The most important thing to keep in mind when you're faced with a youngster in the throes of a tantrum, no matter what the cause, is simple and crucial: Keep cool. Don't complicate the problem with your own frustration. Aspergers children can sense when moms and dads are becoming frustrated. This can just make their frustration worse, and you may have a more exaggerated tantrum on your hands. Instead, take deep breaths and try to think clearly.
Your youngster relies on you to be the example. Hitting and spanking don't help; physical tactics send the message that using force and physical punishment is OK. Instead, have enough self-control for both of you.
First, try to understand what's going on. Tantrums should be handled differently depending on the cause. Try to understand where your youngster is coming from. For example, if your little one has just had a great disappointment, you may need to provide comfort.
It's a different situation when the tantrum stems from a youngster's being refused something. Toddlers have fairly rudimentary reasoning skills, so you aren't likely to get far with explanations. Ignoring the outburst is one way to handle it — if the tantrum poses no threat to your youngster or others. Continue your activities, paying no attention to your youngster but remaining within sight. Don't leave your little one alone, though, otherwise he or she may feel abandoned on top of all of the other uncontrollable emotions.
Aspergers children who are in danger of hurting themselves or others during a tantrum should be taken to a quiet, safe place to calm down. This also applies to tantrums in public places.
Preschoolers and older Aspergers children are more likely to use tantrums to get their way if they've learned that this behavior works. Once children are school age, it's appropriate to send them to their rooms to cool off. Rather than setting a specific time limit, moms and dads can tell them to stay in the room until they've has regained control. The former option is empowering — children can affect the outcome by their own actions, thereby gaining a sense of control that was lost during the tantrum.
After the Storm—
Occasionally a youngster will have a hard time stopping a tantrum. In these cases, it might help to say to say, "I'll help you settle down now."
But do not reward your youngster after a tantrum by giving in. This will only prove to your little one that the tantrum was effective. Instead, verbally praise a youngster for regaining control.
Also, Aspergers children may be especially vulnerable after a tantrum when they know they've been less than adorable. Now is the time for a hug and reassurance that your youngster is loved, no matter what.
When to Call the Doctor—
You should consult your doctor if:
• The tantrums arouse a lot of bad feelings.
• The tantrums increase in frequency, intensity, or duration.
• You have questions about what you're doing or what your youngster is doing.
• You keep giving in.
• Your youngster displays mood disorders such as negativity, low self-esteem, or extreme dependence.
• Your youngster frequently hurts himself or herself or others.
• Your youngster is destructive.
• You're uncomfortable with your responses.
Your doctor can also check for any physical problems that may be contributing to the tantrums, although this is not common. These include hearing or vision problems, a chronic illness, language delays, or a learning disability.
Remember, tantrums usually aren't cause for concern and generally diminish on their own. As children mature developmentally and their grasp of themselves and the world increases, their frustration levels decrease. Less frustration and more control mean fewer tantrums — and happier moms and dads.
A Parent's Role—
Managing Aspergers children can be a challenge. Some days keeping the peace while keeping your cool seems impossible. But whether you're reacting to an occasional temper flare-up or a pattern of outbursts, managing your own anger when things get heated will make it easier to teach children to do the same.
To help tame a temper, try to be your youngster's ally — you're both rooting for your youngster to triumph over the temper that keeps leading to trouble.
While your own patience may be frayed by angry outbursts, opposition, defiance, arguing, and talking back, it's during these episodes that you need your patience most. Of course you feel angry, but what counts is how you handle that.
Reacting to an Aspergers child’s meltdowns with yelling and outbursts of your own will only teach them to do the same. But keeping your cool and calmly working through a frustrating situation lets you show — and teach — appropriate ways to handle anger and frustration.
Let's say you hear your children fighting over a toy in the other room. You have ignored it, hoping that they would work it out themselves. But the arguing turns into screaming, and soon you hear doors slamming, the thump of hitting, and crying. You decide to get involved before someone gets really hurt.
By the time you arrive at the scene of the fight, you may be at the end of your own rope. After all, the sound of screaming is upsetting, and you may be frustrated that your children aren't sharing or trying to get along. (And you know that this toy they're fighting over is going to be lost, broken, or ignored before long anyway!)
So what's the best way for you to react? With your own self-control intact. Teaching by example is your most powerful tool. Speak calmly, clearly, and firmly — not with anger, blame, harsh criticisms, threats, or putdowns. Of course, that's easier said than done. But remember that you're trying to teach your youngster how to handle anger. If you yell or threaten, you'll model and ingrain the exact kinds of behavior you want to discourage. Your children will see that you're so angry and unable to control your own temper that you can't help but scream — and that won't help them learn not to scream.
What You Can Do—
Regulating emotions and managing behavior are skills that develop slowly over time during childhood. Just like any other skills, your children will need to learn and practice them, with your help.
If it's uncharacteristic for your youngster to have a tantrum, on the rare occasion that it happens all you may need to do is clearly but calmly review the rules. "I know you're upset, but no yelling and no name-calling, please" may be all your youngster needs to gain composure. Follow up by clearly, calmly, and patiently giving an instruction like "tell me what you're upset about" or "please apologize to your brother for calling him that name." In this way, you're guiding your youngster back to acceptable behavior and encouraging self-control.
Aspergers children whose temper outbursts are routine may lack the necessary self-control to deal with frustration and anger, and may need more help managing those emotions. These steps may help:
Create clear ground rules and stick to them. Set and maintain clear expectations for what is and what is not acceptable. You can do this without using threats, accusations, or putdowns. Your youngster will get the message if you make clear, simple statements about what's off limits and explain what you want him or her to do. You might say: "There's no yelling in this house. Use your words to tell me what's upsetting you."
Or try these:
• You may not throw things or break things on purpose.
• We don't do that in this family.
• There's no screaming allowed.
• There's no name calling.
• There's no door-slamming in our house.
• In this family, we don't hit or push or shove.
Help Aspergers children put it into words. If your youngster is in the midst of an outburst, find out what's wrong. If necessary, use a time-out to get your youngster to settle down or calmly issue a reminder about house rules and expectations — "There's no yelling or throwing stuff; please stop that right now and cool your jets." Remind your youngster to talk to you without whining, sulking, or yelling. Once your youngster calms down, ask what got him or her so upset. You might say, "Use your words to tell me what's wrong and what you're mad about." By doing this you help your youngster put emotions into words and figure out what, if anything, needs to be done to solve the problem.
Listen and respond. Once your youngster puts the feelings into words, it's up to you to listen and say that you understand. If your youngster is struggling for words, offer some help: "so that made you angry," "you must have felt frustrated," or "that must have hurt your feelings." Offer to help find an answer if there's a problem to be solved, a conflict to be mended, or if an apology is required. Many times, feeling listened to and understood is all children need to regain their composure. But while acknowledging your youngster's feelings, it's important to make it clear that strong emotions aren't an excuse for unacceptable behavior. "I know you're mad, but it's still not OK to hit." Then tell your youngster some things to try instead.
Coping Strategies for Aspergers children—
Children who've learned that it's not OK to yell, hit, and throw stuff when they're upset need other strategies for calming down when they're angry. Offer some ideas to help them learn safe ways to get the anger out or to find other activities that can create a better mood.
Find a way to (safely) get the anger out. There may be no punching walls or even pillows, but you can suggest some good ways for a youngster to vent. Doing a bunch of jumping jacks, dancing around the bedroom, or going outside and doing cartwheels are all good choices. Or your youngster can choose to write about or draw a picture of what is so upsetting.
Learn to shift. This one is tough for Aspergers children — and adults, too. Explain that part of calming down is moving from a really angry mood to a more in-control mood. Instead of thinking of the person or situation that caused the anger, encourage your son or daughter to think of something else to do. Suggest things to think of or do that might bring about a better mood. Your youngster may feel better after a walk around the block, a bike ride, playing a game, reading a favorite book, digging in the garden, or listening to a favorite song. Try one of these things together so you both experience how doing something different can change the way a person feels.
Take a break from the situation. Tell your children that it's OK to walk away from a conflict to avoid an angry outburst. By moving to another part of the house or the backyard, a youngster can get some space and work on calming down.
Building a Strong Foundation—
Fortunately, really angry episodes don't happen too often for most Aspergers children. Those with temper troubles often have an active, strong-willed style and extra energy that needs to be discharged.
Try these steps during the calm times — they can prevent problems before they start by helping Aspergers children learn and practice skills needed to manage the heat of the moment:
Try to be flexible. Parenting can be a tiring experience, but try not to be too rigid. Hearing a constant chorus of "no" can be disheartening for Aspergers children. Sometimes, of course, "no" is absolutely the only answer — "no, you can't ride your bike without your helmet!" But other times, you might let the children win one. For instance, if your youngster wants to keep the wiffle ball game going a little longer, maybe give it 15 more minutes.
See that Aspergers children get a lot of physical activity. Active play can really help children who have big tempers. Encourage outside play and sports your youngster likes. Karate, wrestling, and running can be especially good for children who are trying to get their tempers under control. But any activity that gets the heart pumping can help burn off energy and stress.
Help them label emotions. Help Aspergers children get in the habit of saying what they're feeling and why — for example, "I'm mad because I have to clean my room while my friends are playing." Using words doesn't get a youngster out of doing a chore, but having the discussion can calm the situation. You're having a conversation instead of an argument. Praise your youngster for talking about it instead of slamming the door, for instance.
Encourage your youngster to take control. Compare a temper to a puppy that hasn't yet learned to behave and that's running around all over the place getting into things. Puppies might not mean to be bad — but they need to be trained so that they can learn that there's no eating shoes, no jumping on people or certain furniture, etc. The point is that your youngster's temper — like a puppy — needs to be trained to learn when it's OK to play, how to use all that extra energy, and how to follow rules.
As anyone who's been really angry knows, following sensible advice can be tough when emotions run high. Give your children responsibility for getting under control, but be there to remind them how to do it.
Most Aspergers children can learn to get better at handling anger and frustration. But if your youngster frequently gets into fights and arguments with friends, siblings, and adults, additional help might be needed. Talk with the other adults in your youngster's life — teachers, school counselors, and coaches might be able to help, and your youngster's doctor can recommend a counselor or psychologist.
My Aspergers Child: Preventing Tantrums in Aspergers Children
Some Aspergers children only lose their cool on occasion. But others seem to have a harder time when things don't go their way. Children who tend to have strong reactions by nature will need more help from moms and dads to manage their tempers.
Controlling outbursts can be difficult for Aspergers children — and helping them learn to do so is a tough job for the moms and dads who love them. Try to be patient and positive, and know that these skills take time to develop and that just about every youngster can improve with the right coaching.
Why Aspergers children Have Tantrums—
Tantrums range from whining and crying to screaming, kicking, hitting, and breath holding. They're equally common in boys and girls and usually occur between the ages of 1 to 3.
Children' temperaments vary dramatically — so some children may experience regular tantrums, whereas others have them rarely. They're a normal part of development and don't have to be seen as something negative. Unlike adults, Aspergers children don't have the same inhibitions or control.
Imagine how it feels when you're determined to program your DVD player and aren't able to do it, no matter how hard you try, because you can't understand how. It's pretty frustrating — do you swear, throw the manual, walk away, and slam the door on your way out? That's the adult version of a tantrum. Toddlers are also trying to master their world and when they aren't able to accomplish a task, they turn to one of the only tools at their disposal for venting frustration — a tantrum.
Several basic causes of tantrums are familiar to moms and dads everywhere: The youngster is seeking attention or is tired, hungry, or uncomfortable. In addition, tantrums are often the result of child’s frustration with the world — they can't get something (for example, an object or a parent) to do what they want. Frustration is an unavoidable part of their lives as they learn how people, objects, and their own bodies work.
Tantrums are common during the second year of life, a time when young people are acquiring language. Toddlers generally understand more than they can express. Imagine not being able to communicate your needs to someone — a frustrating experience that may precipitate a tantrum. As language skills improve, tantrums tend to decrease.
Another task toddlers are faced with is an increasing need for autonomy. Toddlers want a sense of independence and control over the environment — more than they may be capable of handling. This creates the perfect condition for power struggles as a youngster thinks "I can do it myself" or "I want it, give it to me." When Aspergers children discover that they can't do it and can't have everything they want, the stage is set for a tantrum.
Avoiding Tantrums—
The best way to deal with tantrums is to avoid them in the first place, whenever possible. Here are some strategies that may help:
• Consider the request carefully when your youngster wants something. Is it outrageous? Maybe it isn't. Choose your battles; accommodate when you can.
• Distract your youngster. Take advantage of your little one's short attention span by offering a replacement for the coveted object or beginning a new activity to replace the frustrating or forbidden one. Or simply change the environment. Take your toddler outside or inside or move to a different room.
• Keep off-limits objects out of sight and out of reach to make struggles less likely to develop over them. Obviously, this isn't always possible, especially outside of the home where the environment can't be controlled.
• Know your youngster's limits. If you know your toddler is tired, it's not the best time to go grocery shopping or try to squeeze in one more errand.
• Make sure your youngster isn't acting up simply because he or she isn't getting enough attention. To a youngster, negative attention (a parent's response to a tantrum) is better than no attention at all. Try to establish a habit of catching your youngster being good ("time in"), which means rewarding your little one with attention for positive behavior.
• Set the stage for success when Aspergers children are playing or trying to master a new task. Offer age-appropriate toys and games. Also, start with something simple before moving on to more challenging tasks.
• Try to give toddlers some control over little things. This may fulfill the need for independence and ward off tantrums. Offer minor choices such as "Do you want orange juice or apple juice?" or "Do you want to brush your teeth before or after taking a bath?" This way, you aren't asking "Do you want to brush your teeth now?" — which inevitably will be answered "no."
If a safety issue is involved and a toddler repeats the forbidden behavior after being told to stop, use a time-out or hold the youngster firmly for several minutes. Be consistent. Aspergers children must understand that you are inflexible on safety issues.
Tantrum Tactics—
The most important thing to keep in mind when you're faced with a youngster in the throes of a tantrum, no matter what the cause, is simple and crucial: Keep cool. Don't complicate the problem with your own frustration. Aspergers children can sense when moms and dads are becoming frustrated. This can just make their frustration worse, and you may have a more exaggerated tantrum on your hands. Instead, take deep breaths and try to think clearly.
Your youngster relies on you to be the example. Hitting and spanking don't help; physical tactics send the message that using force and physical punishment is OK. Instead, have enough self-control for both of you.
First, try to understand what's going on. Tantrums should be handled differently depending on the cause. Try to understand where your youngster is coming from. For example, if your little one has just had a great disappointment, you may need to provide comfort.
It's a different situation when the tantrum stems from a youngster's being refused something. Toddlers have fairly rudimentary reasoning skills, so you aren't likely to get far with explanations. Ignoring the outburst is one way to handle it — if the tantrum poses no threat to your youngster or others. Continue your activities, paying no attention to your youngster but remaining within sight. Don't leave your little one alone, though, otherwise he or she may feel abandoned on top of all of the other uncontrollable emotions.
Aspergers children who are in danger of hurting themselves or others during a tantrum should be taken to a quiet, safe place to calm down. This also applies to tantrums in public places.
Preschoolers and older Aspergers children are more likely to use tantrums to get their way if they've learned that this behavior works. Once children are school age, it's appropriate to send them to their rooms to cool off. Rather than setting a specific time limit, moms and dads can tell them to stay in the room until they've has regained control. The former option is empowering — children can affect the outcome by their own actions, thereby gaining a sense of control that was lost during the tantrum.
After the Storm—
Occasionally a youngster will have a hard time stopping a tantrum. In these cases, it might help to say to say, "I'll help you settle down now."
But do not reward your youngster after a tantrum by giving in. This will only prove to your little one that the tantrum was effective. Instead, verbally praise a youngster for regaining control.
Also, Aspergers children may be especially vulnerable after a tantrum when they know they've been less than adorable. Now is the time for a hug and reassurance that your youngster is loved, no matter what.
When to Call the Doctor—
You should consult your doctor if:
• The tantrums arouse a lot of bad feelings.
• The tantrums increase in frequency, intensity, or duration.
• You have questions about what you're doing or what your youngster is doing.
• You keep giving in.
• Your youngster displays mood disorders such as negativity, low self-esteem, or extreme dependence.
• Your youngster frequently hurts himself or herself or others.
• Your youngster is destructive.
• You're uncomfortable with your responses.
Your doctor can also check for any physical problems that may be contributing to the tantrums, although this is not common. These include hearing or vision problems, a chronic illness, language delays, or a learning disability.
Remember, tantrums usually aren't cause for concern and generally diminish on their own. As children mature developmentally and their grasp of themselves and the world increases, their frustration levels decrease. Less frustration and more control mean fewer tantrums — and happier moms and dads.
A Parent's Role—
Managing Aspergers children can be a challenge. Some days keeping the peace while keeping your cool seems impossible. But whether you're reacting to an occasional temper flare-up or a pattern of outbursts, managing your own anger when things get heated will make it easier to teach children to do the same.
To help tame a temper, try to be your youngster's ally — you're both rooting for your youngster to triumph over the temper that keeps leading to trouble.
While your own patience may be frayed by angry outbursts, opposition, defiance, arguing, and talking back, it's during these episodes that you need your patience most. Of course you feel angry, but what counts is how you handle that.
Reacting to an Aspergers child’s meltdowns with yelling and outbursts of your own will only teach them to do the same. But keeping your cool and calmly working through a frustrating situation lets you show — and teach — appropriate ways to handle anger and frustration.
Let's say you hear your children fighting over a toy in the other room. You have ignored it, hoping that they would work it out themselves. But the arguing turns into screaming, and soon you hear doors slamming, the thump of hitting, and crying. You decide to get involved before someone gets really hurt.
By the time you arrive at the scene of the fight, you may be at the end of your own rope. After all, the sound of screaming is upsetting, and you may be frustrated that your children aren't sharing or trying to get along. (And you know that this toy they're fighting over is going to be lost, broken, or ignored before long anyway!)
So what's the best way for you to react? With your own self-control intact. Teaching by example is your most powerful tool. Speak calmly, clearly, and firmly — not with anger, blame, harsh criticisms, threats, or putdowns. Of course, that's easier said than done. But remember that you're trying to teach your youngster how to handle anger. If you yell or threaten, you'll model and ingrain the exact kinds of behavior you want to discourage. Your children will see that you're so angry and unable to control your own temper that you can't help but scream — and that won't help them learn not to scream.
What You Can Do—
Regulating emotions and managing behavior are skills that develop slowly over time during childhood. Just like any other skills, your children will need to learn and practice them, with your help.
If it's uncharacteristic for your youngster to have a tantrum, on the rare occasion that it happens all you may need to do is clearly but calmly review the rules. "I know you're upset, but no yelling and no name-calling, please" may be all your youngster needs to gain composure. Follow up by clearly, calmly, and patiently giving an instruction like "tell me what you're upset about" or "please apologize to your brother for calling him that name." In this way, you're guiding your youngster back to acceptable behavior and encouraging self-control.
Aspergers children whose temper outbursts are routine may lack the necessary self-control to deal with frustration and anger, and may need more help managing those emotions. These steps may help:
Create clear ground rules and stick to them. Set and maintain clear expectations for what is and what is not acceptable. You can do this without using threats, accusations, or putdowns. Your youngster will get the message if you make clear, simple statements about what's off limits and explain what you want him or her to do. You might say: "There's no yelling in this house. Use your words to tell me what's upsetting you."
Or try these:
• You may not throw things or break things on purpose.
• We don't do that in this family.
• There's no screaming allowed.
• There's no name calling.
• There's no door-slamming in our house.
• In this family, we don't hit or push or shove.
Help Aspergers children put it into words. If your youngster is in the midst of an outburst, find out what's wrong. If necessary, use a time-out to get your youngster to settle down or calmly issue a reminder about house rules and expectations — "There's no yelling or throwing stuff; please stop that right now and cool your jets." Remind your youngster to talk to you without whining, sulking, or yelling. Once your youngster calms down, ask what got him or her so upset. You might say, "Use your words to tell me what's wrong and what you're mad about." By doing this you help your youngster put emotions into words and figure out what, if anything, needs to be done to solve the problem.
Listen and respond. Once your youngster puts the feelings into words, it's up to you to listen and say that you understand. If your youngster is struggling for words, offer some help: "so that made you angry," "you must have felt frustrated," or "that must have hurt your feelings." Offer to help find an answer if there's a problem to be solved, a conflict to be mended, or if an apology is required. Many times, feeling listened to and understood is all children need to regain their composure. But while acknowledging your youngster's feelings, it's important to make it clear that strong emotions aren't an excuse for unacceptable behavior. "I know you're mad, but it's still not OK to hit." Then tell your youngster some things to try instead.
Coping Strategies for Aspergers children—
Children who've learned that it's not OK to yell, hit, and throw stuff when they're upset need other strategies for calming down when they're angry. Offer some ideas to help them learn safe ways to get the anger out or to find other activities that can create a better mood.
Find a way to (safely) get the anger out. There may be no punching walls or even pillows, but you can suggest some good ways for a youngster to vent. Doing a bunch of jumping jacks, dancing around the bedroom, or going outside and doing cartwheels are all good choices. Or your youngster can choose to write about or draw a picture of what is so upsetting.
Learn to shift. This one is tough for Aspergers children — and adults, too. Explain that part of calming down is moving from a really angry mood to a more in-control mood. Instead of thinking of the person or situation that caused the anger, encourage your son or daughter to think of something else to do. Suggest things to think of or do that might bring about a better mood. Your youngster may feel better after a walk around the block, a bike ride, playing a game, reading a favorite book, digging in the garden, or listening to a favorite song. Try one of these things together so you both experience how doing something different can change the way a person feels.
Take a break from the situation. Tell your children that it's OK to walk away from a conflict to avoid an angry outburst. By moving to another part of the house or the backyard, a youngster can get some space and work on calming down.
Building a Strong Foundation—
Fortunately, really angry episodes don't happen too often for most Aspergers children. Those with temper troubles often have an active, strong-willed style and extra energy that needs to be discharged.
Try these steps during the calm times — they can prevent problems before they start by helping Aspergers children learn and practice skills needed to manage the heat of the moment:
Try to be flexible. Parenting can be a tiring experience, but try not to be too rigid. Hearing a constant chorus of "no" can be disheartening for Aspergers children. Sometimes, of course, "no" is absolutely the only answer — "no, you can't ride your bike without your helmet!" But other times, you might let the children win one. For instance, if your youngster wants to keep the wiffle ball game going a little longer, maybe give it 15 more minutes.
See that Aspergers children get a lot of physical activity. Active play can really help children who have big tempers. Encourage outside play and sports your youngster likes. Karate, wrestling, and running can be especially good for children who are trying to get their tempers under control. But any activity that gets the heart pumping can help burn off energy and stress.
Help them label emotions. Help Aspergers children get in the habit of saying what they're feeling and why — for example, "I'm mad because I have to clean my room while my friends are playing." Using words doesn't get a youngster out of doing a chore, but having the discussion can calm the situation. You're having a conversation instead of an argument. Praise your youngster for talking about it instead of slamming the door, for instance.
Encourage your youngster to take control. Compare a temper to a puppy that hasn't yet learned to behave and that's running around all over the place getting into things. Puppies might not mean to be bad — but they need to be trained so that they can learn that there's no eating shoes, no jumping on people or certain furniture, etc. The point is that your youngster's temper — like a puppy — needs to be trained to learn when it's OK to play, how to use all that extra energy, and how to follow rules.
As anyone who's been really angry knows, following sensible advice can be tough when emotions run high. Give your children responsibility for getting under control, but be there to remind them how to do it.
Most Aspergers children can learn to get better at handling anger and frustration. But if your youngster frequently gets into fights and arguments with friends, siblings, and adults, additional help might be needed. Talk with the other adults in your youngster's life — teachers, school counselors, and coaches might be able to help, and your youngster's doctor can recommend a counselor or psychologist.
My Aspergers Child: Preventing Tantrums in Aspergers Children
Friday, April 9, 2010
Strategies to deal with Aspergers behaviors...
Today I want to look at some quick – yet effective – strategies to deal with Aspergers behaviors. Ready? O.K. Let’s go…
Disciplining kids displaying Aspergers characteristic behavior will often require an approach which is somewhat unique to that of other kids. Finding the balance between understanding the needs of a youngster with Aspergers and discipline which is age appropriate and situationally necessary is achievable when applying some simple but effective strategies. These strategies can be implemented both at home and in more public settings.
General Behavior Problems—
Traditional discipline may fail to produce the desired results for kids with Aspergers, primarily because they are unable to appreciate the consequences of their actions. Consequently, punitive measures are apt to exacerbate the type of behavior the punishment is intended to reduce, whilst at the same time giving rise to distress in both the youngster and parent.
At all times the emotional and physical wellbeing of your youngster should take priority. Often this will necessitate removing your youngster from a potentially distressing situation as soon as possible. Consider maintaining a diary of your youngster's behavior with a view to ascertaining patterns or triggers. Recurring behavior may be indicative of a youngster taking some satisfaction in receiving a desired response from peers, moms and dads or teachers.
For example, a youngster with Aspergers may come to understand that hurting another youngster in class will result in his being removed from class, notwithstanding the associated consequence to his peer. The solution may not be most effectively rooted in punishing the youngster for the behavior, or even attempting to explain the situation from the perspective of their injured peer, but by treating the root cause behind the motivation for the misbehavior...for example, can the youngster be made more comfortable in class so that they will not want to leave it?
One of the means to achieve this may be to focus on the positive. Praise for good behavior, and reinforcement by way of something like a Reward Book, can assist. The use of encouraging verbal cues delivered in a calm tone are likely to elicit more beneficial responses than the harsher verbal warnings which might be effective on kids who are not displaying some sort of Aspergers characteristic. If necessary, when giving directions to cease a type of misbehavior, these should also be couched as positives rather than negatives. For example, rather than telling a youngster to stop hitting his brother with the ruler, the youngster should be directed to put the ruler down.
Obsessive or Fixated Behavior—
Almost all kids go through periods of development where they become engrossed in one subject matter or another, but kids with Aspergers often display obsessive and repetitive characteristics, which can have significant implications for behavior.
For example, if an Aspergers youngster becomes fixated upon reading a particular story each night, they may become distressed if this regime is not adhered to, or if the story is interrupted. Again, the use of a behavior diary can assist in identifying fixations for your youngster. Once a fixation is identified, it is important to set appropriate boundaries for your youngster. Providing a structure within which your youngster can explore the obsession can assist in then keeping the obsession within reasonable limits, without the associated angst which might otherwise arise through such limitations. For example, tell your youngster that they may watch their favorite cartoon for half an hour after dinner, and make clear time for that in their routine.
It is appropriate to utilize the obsession to motivate and reward your youngster for good behavior. Always ensure any reward associated with positive behavior is granted immediately to assist the youngster recognizing the nexus between the two.
A particularly useful technique to try to develop social reciprocity is to have your youngster talk for five minutes about a particularly favored topic after they have listened to you talk about an unrelated topic. This serves to help your youngster understand that not everyone shares their enthusiasm for their subject matter.
Bridging the Gap between Aspergers and Discipline and Other Siblings—
For siblings without Aspergers, the differential and what at times no doubt appears to be preferential treatment received by an Aspergers sibling can give rise to feelings of confusion and frustration. Often they will fail to understand why their brother or sister apparently seems free to behave as they please without the normal constraints placed upon them.
It is important to explain to siblings – and encourage open discussion about - the disorder itself. Encouragement should extend to the things siblings can do to assist the Aspergers youngster, and this should be positively reinforced through acknowledgement when it occurs.
Sleep Difficulties—
Aspergers kids are known for experiencing sleep problems. Kids with Aspergers may have lesser sleep requirements, and as such are more likely to become anxious about sleeping, or may find they become anxious when waking during the night or early in the morning.
Combat your youngster's anxiety by making their bedrooms a place of safety and comfort. Remove or store items which might be prone to injure your youngster if they decide to wander at night. Include in the behavioral diary a record of your youngster's sleep patterns. It may assist your youngster if you keep a list of their routine, including dinner, bath time, story and bed, in order to provide structure. Include an image or symbol of them waking in the morning to provide assurance as to what will happen. Social stories have proven to be a particularly successful tactic in decreasing a youngster's anxiety by providing clear instructions on how part of their day is likely to play out.
At School—
Another Asperger characteristic is that kids will often experience difficulty during parts of the school day which lack structure. If left to their own devices their difficulties with social interaction and self management can result in anxiety. The use of a buddy system can assist in providing direction, as can the creation of a timetable for recess and lunch times. These should be raised with class teachers and implemented with their assistance.
Explain the concept of free time to your youngster, or consider providing a separate purpose or goal for your youngster during such time, such as reading a book, or helping to set up paint and brushes for the afternoon tasks.
In Public—
Kids with Aspergers can become overwhelmed to the point of distress by even a short outing in public. The result is that many moms and dads with Aspergers simply seek to avoid as much as possible situations where their youngster is exposed to the public. While expedient, it may not offer the best long term solution to your youngster, and there are strategies to assist with outings.
Consider providing your youngster with an ipod, or have the radio on in the car to block out other sounds and stimuli. Prepare a social story or list explaining to the youngster a trip to the shops, or doctor. Be sure to include on the list your return home. Consider giving your youngster a task to complete during the trip, or having them assist you. At all times, maintain consistency when dealing with the Aspergers youngster. It pays to ensure that others involved in your youngster's care are familiar with your strategies and techniques, such as those outlined above, and are able to apply them.
Most importantly, don't hesitate to seek support networks for moms and dads with Aspergers, and take advantage of the wealth of knowledge those who have dealt with the disorder before you have developed. The assistance you can gain from these and other resources can assist you in developing important strategies to deal with problems with Aspergers in a manner most beneficial to your youngster.
How to Stop Meltdowns and Temper Tantrums in Aspergers Children
Parents’ Strategies A-Z
The Aspergers Comprehensive Handbook is a straightforward and highly practical tool designed to help parents (and teachers) implement comprehensive parenting and educational strategies, providing systems to deal with the physical, mental, emotional and social issues that occur in the day-to-day realities of Aspergers children. ==> Special discount to newsletter subscribers: Enter the following discount code: AEU246 and receive The Aspergers Comprehensive Handbook for only $17.00 (SAVE $32.00).
Teaching Aspergers Students: Free Library for Educators
Disciplining kids displaying Aspergers characteristic behavior will often require an approach which is somewhat unique to that of other kids. Finding the balance between understanding the needs of a youngster with Aspergers and discipline which is age appropriate and situationally necessary is achievable when applying some simple but effective strategies. These strategies can be implemented both at home and in more public settings.
General Behavior Problems—
Traditional discipline may fail to produce the desired results for kids with Aspergers, primarily because they are unable to appreciate the consequences of their actions. Consequently, punitive measures are apt to exacerbate the type of behavior the punishment is intended to reduce, whilst at the same time giving rise to distress in both the youngster and parent.
At all times the emotional and physical wellbeing of your youngster should take priority. Often this will necessitate removing your youngster from a potentially distressing situation as soon as possible. Consider maintaining a diary of your youngster's behavior with a view to ascertaining patterns or triggers. Recurring behavior may be indicative of a youngster taking some satisfaction in receiving a desired response from peers, moms and dads or teachers.
For example, a youngster with Aspergers may come to understand that hurting another youngster in class will result in his being removed from class, notwithstanding the associated consequence to his peer. The solution may not be most effectively rooted in punishing the youngster for the behavior, or even attempting to explain the situation from the perspective of their injured peer, but by treating the root cause behind the motivation for the misbehavior...for example, can the youngster be made more comfortable in class so that they will not want to leave it?
One of the means to achieve this may be to focus on the positive. Praise for good behavior, and reinforcement by way of something like a Reward Book, can assist. The use of encouraging verbal cues delivered in a calm tone are likely to elicit more beneficial responses than the harsher verbal warnings which might be effective on kids who are not displaying some sort of Aspergers characteristic. If necessary, when giving directions to cease a type of misbehavior, these should also be couched as positives rather than negatives. For example, rather than telling a youngster to stop hitting his brother with the ruler, the youngster should be directed to put the ruler down.
Obsessive or Fixated Behavior—
Almost all kids go through periods of development where they become engrossed in one subject matter or another, but kids with Aspergers often display obsessive and repetitive characteristics, which can have significant implications for behavior.
For example, if an Aspergers youngster becomes fixated upon reading a particular story each night, they may become distressed if this regime is not adhered to, or if the story is interrupted. Again, the use of a behavior diary can assist in identifying fixations for your youngster. Once a fixation is identified, it is important to set appropriate boundaries for your youngster. Providing a structure within which your youngster can explore the obsession can assist in then keeping the obsession within reasonable limits, without the associated angst which might otherwise arise through such limitations. For example, tell your youngster that they may watch their favorite cartoon for half an hour after dinner, and make clear time for that in their routine.
It is appropriate to utilize the obsession to motivate and reward your youngster for good behavior. Always ensure any reward associated with positive behavior is granted immediately to assist the youngster recognizing the nexus between the two.
A particularly useful technique to try to develop social reciprocity is to have your youngster talk for five minutes about a particularly favored topic after they have listened to you talk about an unrelated topic. This serves to help your youngster understand that not everyone shares their enthusiasm for their subject matter.
Bridging the Gap between Aspergers and Discipline and Other Siblings—
For siblings without Aspergers, the differential and what at times no doubt appears to be preferential treatment received by an Aspergers sibling can give rise to feelings of confusion and frustration. Often they will fail to understand why their brother or sister apparently seems free to behave as they please without the normal constraints placed upon them.
It is important to explain to siblings – and encourage open discussion about - the disorder itself. Encouragement should extend to the things siblings can do to assist the Aspergers youngster, and this should be positively reinforced through acknowledgement when it occurs.
Sleep Difficulties—
Aspergers kids are known for experiencing sleep problems. Kids with Aspergers may have lesser sleep requirements, and as such are more likely to become anxious about sleeping, or may find they become anxious when waking during the night or early in the morning.
Combat your youngster's anxiety by making their bedrooms a place of safety and comfort. Remove or store items which might be prone to injure your youngster if they decide to wander at night. Include in the behavioral diary a record of your youngster's sleep patterns. It may assist your youngster if you keep a list of their routine, including dinner, bath time, story and bed, in order to provide structure. Include an image or symbol of them waking in the morning to provide assurance as to what will happen. Social stories have proven to be a particularly successful tactic in decreasing a youngster's anxiety by providing clear instructions on how part of their day is likely to play out.
At School—
Another Asperger characteristic is that kids will often experience difficulty during parts of the school day which lack structure. If left to their own devices their difficulties with social interaction and self management can result in anxiety. The use of a buddy system can assist in providing direction, as can the creation of a timetable for recess and lunch times. These should be raised with class teachers and implemented with their assistance.
Explain the concept of free time to your youngster, or consider providing a separate purpose or goal for your youngster during such time, such as reading a book, or helping to set up paint and brushes for the afternoon tasks.
In Public—
Kids with Aspergers can become overwhelmed to the point of distress by even a short outing in public. The result is that many moms and dads with Aspergers simply seek to avoid as much as possible situations where their youngster is exposed to the public. While expedient, it may not offer the best long term solution to your youngster, and there are strategies to assist with outings.
Consider providing your youngster with an ipod, or have the radio on in the car to block out other sounds and stimuli. Prepare a social story or list explaining to the youngster a trip to the shops, or doctor. Be sure to include on the list your return home. Consider giving your youngster a task to complete during the trip, or having them assist you. At all times, maintain consistency when dealing with the Aspergers youngster. It pays to ensure that others involved in your youngster's care are familiar with your strategies and techniques, such as those outlined above, and are able to apply them.
Most importantly, don't hesitate to seek support networks for moms and dads with Aspergers, and take advantage of the wealth of knowledge those who have dealt with the disorder before you have developed. The assistance you can gain from these and other resources can assist you in developing important strategies to deal with problems with Aspergers in a manner most beneficial to your youngster.
How to Stop Meltdowns and Temper Tantrums in Aspergers Children
Parents’ Strategies A-Z
The Aspergers Comprehensive Handbook is a straightforward and highly practical tool designed to help parents (and teachers) implement comprehensive parenting and educational strategies, providing systems to deal with the physical, mental, emotional and social issues that occur in the day-to-day realities of Aspergers children. ==> Special discount to newsletter subscribers: Enter the following discount code: AEU246 and receive The Aspergers Comprehensive Handbook for only $17.00 (SAVE $32.00).
Teaching Aspergers Students: Free Library for Educators
Tuesday, April 6, 2010
Aspergers Children and “Rules”
Much has been made in the literature about the rigidity of the Aspergers child. A good example of this is their "resistance to change". Often the observed behavior isn't a resistance to change, but a binding to a particular rule or rule set.
The Aspergers child is, to a certain extent, controlled by rules. The impact of these invisible rules on their behavior should not be underestimated. It is often a source of conflict and can also be the source of Aspergers depression.
Where do these Rules come from?
The majority of the child's rules come from their own environment. They can be communicated directly or implied. In some cases, the Aspergers child will completely misunderstand directions and create an internal rule that isn't necessarily in their best interests. Changing these rules is difficult, especially when they've been in force for an extended period.
Here’s a story that represents a good example of what I’m talking about sent to me by an adult with Aspergers:
“When I was quite young, a grandparent saw a boy give me a "suck" on his chupa-chop (a lolly on a stick). Obviously, to an adult, this is quite disgusting. I was called inside immediately and lectured at length about germs and sharing food. As a direct result of this discussion, food non-sharing rules came into being and over time they grew in strength.
This caused quite a number of social problems at school. The other children would ask me for food if my mother had given me lunch money. I was unable to even share chips. I would point out to the other children that I never ever asked them for anything but it still caused a lot of problems and I lost quite a few "friends" because of it.
The longer the rule stayed in force and unchallenged, the stronger it got. I quickly got to the point where I couldn't eat food from someone else's plate (I still have great difficulty doing this). Worst of all, it kick-started a period where I couldn't eat my food if it had been "looked at" by a sibling. My mother told my poor sister that she wasn't allowed to look at my food at breakfast.
The worst of these rules disappeared after a couple of years, but I still struggle with the oldest parts of them. I still have difficulty if one of children tries to take something from my plate.”
Rules in Adults with Aspergers—
Adults who are aware of their condition can use their rules to great advantage. For example; if there is a need to lose weight and the adult with Aspergers creates sensible rules about eating, they will not be able to break them easily. Note: This can be dangerous if the rules aren't well thought out and malnutrition could result.
Other rules could include priorities at work. These are the sorts of rules which are seen by practitioners as "resistance to change". Contrary to opinion, they're not a result of the Aspergers individual clinging to the old ways because they want to.
What can moms and dads do?
Recognize the power of rules and help your Aspergers child to recognize them too. Understanding these rules is the key to using them wisely.
Try to figure out what rules are in place. This must usually be done by observation as the younger child probably won't realize that they are following rules. Even adults with Aspergers don't have a list of rules handy.
Foster a belief that rules sometimes need to change.
Watch rules carefully to determine if they are "tightening" and challenge them if they appear to be having any negative impact. If possible, try to redefine the boundaries of the existing rule.
MyAspergersChild.com
The Aspergers child is, to a certain extent, controlled by rules. The impact of these invisible rules on their behavior should not be underestimated. It is often a source of conflict and can also be the source of Aspergers depression.
Where do these Rules come from?
The majority of the child's rules come from their own environment. They can be communicated directly or implied. In some cases, the Aspergers child will completely misunderstand directions and create an internal rule that isn't necessarily in their best interests. Changing these rules is difficult, especially when they've been in force for an extended period.
Here’s a story that represents a good example of what I’m talking about sent to me by an adult with Aspergers:
“When I was quite young, a grandparent saw a boy give me a "suck" on his chupa-chop (a lolly on a stick). Obviously, to an adult, this is quite disgusting. I was called inside immediately and lectured at length about germs and sharing food. As a direct result of this discussion, food non-sharing rules came into being and over time they grew in strength.
This caused quite a number of social problems at school. The other children would ask me for food if my mother had given me lunch money. I was unable to even share chips. I would point out to the other children that I never ever asked them for anything but it still caused a lot of problems and I lost quite a few "friends" because of it.
The longer the rule stayed in force and unchallenged, the stronger it got. I quickly got to the point where I couldn't eat food from someone else's plate (I still have great difficulty doing this). Worst of all, it kick-started a period where I couldn't eat my food if it had been "looked at" by a sibling. My mother told my poor sister that she wasn't allowed to look at my food at breakfast.
The worst of these rules disappeared after a couple of years, but I still struggle with the oldest parts of them. I still have difficulty if one of children tries to take something from my plate.”
Rules in Adults with Aspergers—
Adults who are aware of their condition can use their rules to great advantage. For example; if there is a need to lose weight and the adult with Aspergers creates sensible rules about eating, they will not be able to break them easily. Note: This can be dangerous if the rules aren't well thought out and malnutrition could result.
Other rules could include priorities at work. These are the sorts of rules which are seen by practitioners as "resistance to change". Contrary to opinion, they're not a result of the Aspergers individual clinging to the old ways because they want to.
What can moms and dads do?
Recognize the power of rules and help your Aspergers child to recognize them too. Understanding these rules is the key to using them wisely.
Try to figure out what rules are in place. This must usually be done by observation as the younger child probably won't realize that they are following rules. Even adults with Aspergers don't have a list of rules handy.
Foster a belief that rules sometimes need to change.
Watch rules carefully to determine if they are "tightening" and challenge them if they appear to be having any negative impact. If possible, try to redefine the boundaries of the existing rule.
MyAspergersChild.com
Wednesday, March 31, 2010
Aspergers Children and Teens: Motivation Behind the Behavior
In this week’s newsletter, I want to expose you to some reasons why your Aspergers child behaves the way he or she does. You may be surprised. Ready? O.K. Let’s go…
Motivation Behind the Behavior
You need to understand what your youngster or adolescent is thinking, how he interprets what is going on, and how his deficits cause problems before you can begin any intervention strategy. Do not rush into action until you have collected enough information and analyzed what is going on. If you do not know the reasons behind the behavior, you may very likely do the wrong thing. If you know what is going on, you can help things go better.
Realizing that your youngster will not be a good observer of his behavior is your first step. The Aspergers youngster often does not know what to do in a situation. He does not know the appropriate behavior because he doesn't understand how the world works. Or, if he knows a better solution, he cannot use it because he becomes "stuck."
Not knowing what to do, or being unable to do what is appropriate, results in anxiety that leads to additional ineffective and inappropriate actions. An Aspergers behavior is usually a result of this anxiety, which leads to difficulty moving on and letting go of an issue and "getting stuck" on something. This is rigidity, and it is the most common reason for behavioral problems. See the sidebar for a list of reasons for rigidity. You must deal with rigidity and replace it with flexibility early on in your plan to help your youngster. Flexibility is a skill that can be taught, and you will make this a major part of your efforts to help your youngster.
Reasons for Rigidity—
1. A misunderstanding or misinterpretation of another's action.
2. A violation of a rule or ritual – changing something from the way it is supposed to be. Someone is violating a rule and this is unacceptable to the youngster.
3. Anxiety about a current or upcoming event, no matter how trivial it might appear to you.
4. Immediate gratification of a need.
5. Lack of knowledge about how something is done. By not knowing how the world works with regard to specific situations and events, the youngster will act inappropriately instead.
6. Other internal issues, such as sensory, inattention (ADHD), oppositional tendency (ODD), or other psychiatric issues may also be causes of behavior.
7. The need to avoid or escape from a non-preferred activity, often something difficult or undesirable. Often, if your youngster cannot be perfect, she does not want to engage in an activity.
8. The need to control a situation.
9. The need to engage in or continue a preferred activity, usually an obsessive action or fantasy.
10. Transitioning from one activity to another. This is usually a problem because it may mean ending an activity before he is finished with it.
Note: Attention-getting is very rarely seen. It should not be considered as a reason for rigidity until all of the above reasons have been considered and eliminated.
Understanding your youngster involves knowing the Aspergers characteristics discussed earlier and how they manifest themselves in everyday behaviors. How does your youngster or adolescent see the world, think about matters, and react to what is going on around him? The following reasons will help you understand "why he acts the way he does."
Not Understanding How the World Works—
Your Aspergers youngster has a neuro-cognitive disorder that affects many areas of functioning. This includes a difficulty with the basic understanding of the rules of society, especially if they are not obvious. Life has many of these rules. Some are written, some are spoken, and some are learned through observation and intuition. Your youngster only knows what has been directly taught to him through books, movies, TV shows, the Internet, and explicit instructions. He is not able to sit in a room, observe what is happening, and understand social cues, implied directions, or how to "read between the lines," and as he is growing up, he does not learn how to do this. Instead, he learns facts. He does not "take in" what is happening around him that involves the rest of the world, only what directly impacts him.
Many of the conversations he has had have generally been about knowledge and facts, not about feelings, opinions, and interactions. As a result, he does not really know how the world works and what one is supposed to do in various situations. This can apply to even the smallest situations you might take for granted. Not knowing the unspoken rules of situations causes anxiety and upset. This leads to many of the behavioral issues that appear as the Aspergers youngster tries to impose his own sense of order on a world he doesn't understand.
The Aspergers youngster creates his own set of rules for everyday functioning to keep things from changing and thereby minimize his anxiety. Sometimes, he just makes up the rules when it is convenient. Other times, he attempts to make them up by looking for patterns, rules, or the logic of a situation to make it less chaotic for him and more predictable and understandable. If there are no rules for an event or situation, he will create them from his own experiences based on what he has read, seen, or heard. He will often have a great deal of information to use in reaching his conclusions and forming his opinions and feelings. As a result, some of his conclusions are correct and some are wrong.
He will rarely consider someone else's point of view if he does not consider them to be an "expert." The fewer people he sees as experts, the more behavioral difficulty you will see. He might consider teachers and others to be experts, but his moms and dads will rarely be seen as such. Therefore, he will argue with you about your opinions if different from his own. He thinks that his opinion is as good as yours, so he chooses his. This represents his rigid thinking. He finds it difficult to be flexible and consider alternate views, especially if he has already reached a conclusion. New ideas can be difficult to accept ("I'd rather do it the way I've always done it"). Being forced to think differently can cause a lot of anxiety.
You must never overestimate your Aspergers youngster's understanding of a situation because of his high intellectual ability or his other strengths. He is a boy who needs to figure out how the world works. He needs a road map and the set of instructions, one example at a time.
Frames of Reference—
In trying to understand how the world works, your youngster tries to make sense of your explanations, but sometimes is not able to do this. As a result, your effort at intervening falls short. This can occur because your explanation has no meaning. Each Aspergers youngster can only understand things for which they have a frame of reference, meaning they have a picture or idea about this from other sources or from prior discussions. They cannot understand what you will tell them without this frame of reference. For example, when I asked a teenage boy if he missed his moms and dads when he was at overnight camp for a week, he replied that it was not all that long. When I asked him again if he missed them, he said he could e-mail them whenever he wanted. After my third attempt to get an answer he finally said to me, "I can't answer that question. Since I have never missed anyone before, I have nothing against which I can compare my feelings to know what missing feels like." In the next few chapters we will explain how to give your youngster or adolescent a new frame of reference.
Preferred and Non-preferred Activities—
For all Aspergers individuals, life tends to be divided into two categories – preferred and non-preferred activities. Preferred activities are those things he engages in frequently and with great intensity. He seeks them out without any external motivation. However, not all of his preferred activities are equal. Some are much more highly desired and prized. An activity that is lower on the list can never be used as a motivator for one that is higher. For example, you cannot get him to substitute his video game playing by offering a food reward if the game playing is higher on his list.
Any activity that is not preferred can be considered non-preferred. They are less desirable and many are avoided. The lower they are on the list of desirability, the more he will resist or avoid doing them. Sometimes an activity or task becomes non-preferred because it is made to compete with one that is much more highly valued. For example, taking a bath could be enjoyable, but if your youngster is reading, and reading is higher on his list, he will resist or throw a tantrum.
Preferred and non-preferred activities are always problem areas. Your youngster or teen will always want to engage in preferred activities even when you have something more important for him to do. He does not want to end preferred activities and your attempts to have him end them can produce upset of one kind or another. On the other hand, trying to get him to do non-preferred activities, such as interacting socially, can also be difficult. If many non-preferred elements are combined together, the problem can become a nightmare, such as with homework.
The Aspergers youngster rarely has activities he just likes. He tends to either love or hate an activity. The middle ground is usually missing. Teaching a middle ground or shades of gray can be a goal and will be discussed later. Also, as you try to teach him something new, you will encounter resistance because you are asking him to do something that's not a preferred activity. But, as he outgrows younger interests, he will need to learn new ones in order to have some common interests with his peers. He needs to experience new things to see if he likes them, but may not want to do this just because you're asking him to do something new. He already has his list of preferred interests and will rarely see the need for anything new. Quite often, his preferred list will include computer or video games. However, the more he is on the computer or the more he plays video games, the less available he is to be in the real world and learn something new. Most likely, you will have to control his access to preferred activities if new ones are to be introduced.
Obsessive-Compulsive Behaviors and Anxiety—
Obsessive-compulsive issues, also referred to as rituals, rigidity, perseverations, rules, or black-and-white thinking, originate in the Aspergers person's difficulty understanding the world around him. This creates anxiety, the underlying cause for his obsessive-compulsive behaviors. You will see anxiety in many different ways, depending on how your youngster manifests it. Some kids will show it in obvious ways, such as crying, hiding under furniture, or clinging to you. Others show it by trying to control the situation and bossing people around. Some may hit or throw a tantrum. Some may act silly. No matter how your youngster displays his anxiety, you need to recognize that it is there and not assume it is due to some other cause such as attention seeking or just plain misbehavior.
Anxiety can occur for the smallest reason. Don't judge anxiety-producing situations by your own reaction to an event. Your youngster will be much more sensitive to situations than you will be, and often there will be no logical reason for his anxiety. Something that you would be anxious about causes no anxiety in your youngster, while a small event causes him to be quite anxious. When events change, he never knows what is going to come next and he becomes confused and upset, leading to some form of inappropriate behavior.
Your youngster's first reaction is to try to reduce or eliminate his anxiety. He must do something, and one of the most effective means is to take all changes, uncertainty, and variability out of the equation. This can be accomplished by obsessions. If everything is done a certain way, if there is a definite and unbreakable rule for every event, and if everyone does as he wishes, everything will be fine. Anxiety is then diminished or reduced, and no upset, tantrums, or meltdowns occur.
Unfortunately, it is virtually impossible to do this in the real world. Nevertheless, anxiety needs to be dealt with in some manner. This is the first order of business in planning for many interventions. If you move ahead before this has been settled, it will continue to be a significant interfering factor. Let's look at some examples of this.
Sam, age seventeen, won't leave the house because he wants to have his nails in a certain condition. This condition requires many hours of grooming that interfere with sleeping, eating, and doing just about anything else. This is obsessive-compulsive behavior. Any attempt to get him to leave the house or stop his nail maintenance causes anxiety and is rarely successful.
Anytime Max, age eleven, hears an answer that he does not like, he becomes upset. If he asks a question or makes a request and the other person's response is not what he expected, he starts to argue with them, often acting out physically. He must have certain answers that are to his liking. This is rigidity in thought and it is also obsessive-compulsive.
Each of these cases has a cognitive and a behavioral component, and both must be considered. Each youngster must learn to get "unstuck" or let go of an issue and move on. They also need to learn how to change their thinking so that it doesn't become a problem to begin with.
Behavioral Manifestations of Anxiety—
• Becoming easily overwhelmed and having difficulty calming down.
• Creating their own set of rules for doing something.
• Demanding unrealistic perfection in their handwriting, or wanting to avoid doing any writing.
• Demonstrating unusual fears, anxiety, tantrums, and showing resistance to directions from others.
• Displaying a good deal of silly behaviors because they are anxious or do not know what to do in a situation.
• Eating a narrow range of foods.
• Having a narrow range of interests, and becoming fixated on certain topics and/or routines.
• Having trouble playing and socializing well with peers or avoiding socializing altogether. They prefer to be alone because others do not do things exactly as they do.
• Insisting on having things and/or events occur in a certain way.
• Intensely disliking loud noises and crowds.
• Lecturing others or engaging in a monologue rather than having a reciprocal conversation.
• Preferring to do the same things over and over.
• Reacting poorly to new events, transitions, or changes.
• Remaining in a fantasy world a good deal of the time and appearing unaware of events around them.
• Tending to conserve energy and put forth the least effort they can, except with highly preferred activities.
• Wanting things to go their way, when they want them to, no matter what anyone else may want. They may argue, throw a tantrum, ignore you, growl, refuse to yield, etc.
Black-and-White Thinking and Mind-blindness—
The obsessive-compulsive approach to life results in the narrow range of interests and insistence on set routines typical of an Aspergers youngster. However, it usually starts as a cognitive (thinking) issue before it becomes a behavioral one. Cognitive issues, such as the inability to take someone else's perspective (mind-blindness) and the lack of cognitive flexibility (black-and-white thinking), cause many of the behaviors we see. We know there is a cognitive element by looking at the youngster's behaviors. There is always some distress, anxiety, or obsession manifested in every inappropriate behavior.
As mentioned, your youngster's cognitive difficulties lead to inaccurate interpretations and understanding of the world. How someone interprets a situation determines how he will respond to it. Many times the interpretation of an event is either not an accurate one or not one that leads to positive or pro-social actions. If the event can be reinterpreted for him, it might lead to a more productive outcome. In doing this, we must first try to understand how the individual interprets a situation. All of the individual's behaviors are filtered through his perception of the way the world works.
Try to answer all the questions below to see which explanation fits the situation the best. Each of these questions represents a problematic way of thinking for your youngster. As a result of your questioning, it should become clearer that your youngster is engaging in a nonproductive interpretation and that correcting this faulty thinking with a more positive interpretation could lead to a more positive action. Remember, details are extremely important in trying to understand what is happening and what to do about it. Do not try to intervene until you understand, at least to a small degree, what is happening with your youngster. Changing thinking becomes a paramount issue, but one that is often neglected. However, successful changes in thinking will dramatically increase the success rate of any strategy you use.
Questions to Ask about Your Youngster's Behavior—
To help you determine the reasons why your youngster acts the way he does, you should ask yourself the following questions:
1. Because a situation was one way the first time, does he feel it has to be that way always? (Being rule bound.)
2. Does he need to be taught a better way to deal with a problem? (He does not understand the way the world works.)
3. Does he see only two choices to a situation rather than many options? (Black-and-white thinking.)
4. Has he made a rule that can't be followed? (He sees only one way to solve a problem. He cannot see alternatives.)
5. Is he blaming you for something that is beyond your control? (He feels that you must solve the problem for him even when it involves issues you have no control over.)
6. Is he exaggerating the importance of an event? There are no small events, everything that goes wrong is a catastrophe. (Black-and-white thinking.)
7. Is he expecting perfection in himself? (Black-and-white thinking.)
8. Is he misunderstanding what is happening and assuming something that isn't true? (Misinterpretation.)
9. Is he stuck on an idea and can't let it go? (He does not know how to let go and move on when there is a problem.)
My Aspergers Child: Preventing Meltdowns and Tantrums in Aspergers Children and Teens
Motivation Behind the Behavior
You need to understand what your youngster or adolescent is thinking, how he interprets what is going on, and how his deficits cause problems before you can begin any intervention strategy. Do not rush into action until you have collected enough information and analyzed what is going on. If you do not know the reasons behind the behavior, you may very likely do the wrong thing. If you know what is going on, you can help things go better.
Realizing that your youngster will not be a good observer of his behavior is your first step. The Aspergers youngster often does not know what to do in a situation. He does not know the appropriate behavior because he doesn't understand how the world works. Or, if he knows a better solution, he cannot use it because he becomes "stuck."
Not knowing what to do, or being unable to do what is appropriate, results in anxiety that leads to additional ineffective and inappropriate actions. An Aspergers behavior is usually a result of this anxiety, which leads to difficulty moving on and letting go of an issue and "getting stuck" on something. This is rigidity, and it is the most common reason for behavioral problems. See the sidebar for a list of reasons for rigidity. You must deal with rigidity and replace it with flexibility early on in your plan to help your youngster. Flexibility is a skill that can be taught, and you will make this a major part of your efforts to help your youngster.
Reasons for Rigidity—
1. A misunderstanding or misinterpretation of another's action.
2. A violation of a rule or ritual – changing something from the way it is supposed to be. Someone is violating a rule and this is unacceptable to the youngster.
3. Anxiety about a current or upcoming event, no matter how trivial it might appear to you.
4. Immediate gratification of a need.
5. Lack of knowledge about how something is done. By not knowing how the world works with regard to specific situations and events, the youngster will act inappropriately instead.
6. Other internal issues, such as sensory, inattention (ADHD), oppositional tendency (ODD), or other psychiatric issues may also be causes of behavior.
7. The need to avoid or escape from a non-preferred activity, often something difficult or undesirable. Often, if your youngster cannot be perfect, she does not want to engage in an activity.
8. The need to control a situation.
9. The need to engage in or continue a preferred activity, usually an obsessive action or fantasy.
10. Transitioning from one activity to another. This is usually a problem because it may mean ending an activity before he is finished with it.
Note: Attention-getting is very rarely seen. It should not be considered as a reason for rigidity until all of the above reasons have been considered and eliminated.
Understanding your youngster involves knowing the Aspergers characteristics discussed earlier and how they manifest themselves in everyday behaviors. How does your youngster or adolescent see the world, think about matters, and react to what is going on around him? The following reasons will help you understand "why he acts the way he does."
Not Understanding How the World Works—
Your Aspergers youngster has a neuro-cognitive disorder that affects many areas of functioning. This includes a difficulty with the basic understanding of the rules of society, especially if they are not obvious. Life has many of these rules. Some are written, some are spoken, and some are learned through observation and intuition. Your youngster only knows what has been directly taught to him through books, movies, TV shows, the Internet, and explicit instructions. He is not able to sit in a room, observe what is happening, and understand social cues, implied directions, or how to "read between the lines," and as he is growing up, he does not learn how to do this. Instead, he learns facts. He does not "take in" what is happening around him that involves the rest of the world, only what directly impacts him.
Many of the conversations he has had have generally been about knowledge and facts, not about feelings, opinions, and interactions. As a result, he does not really know how the world works and what one is supposed to do in various situations. This can apply to even the smallest situations you might take for granted. Not knowing the unspoken rules of situations causes anxiety and upset. This leads to many of the behavioral issues that appear as the Aspergers youngster tries to impose his own sense of order on a world he doesn't understand.
The Aspergers youngster creates his own set of rules for everyday functioning to keep things from changing and thereby minimize his anxiety. Sometimes, he just makes up the rules when it is convenient. Other times, he attempts to make them up by looking for patterns, rules, or the logic of a situation to make it less chaotic for him and more predictable and understandable. If there are no rules for an event or situation, he will create them from his own experiences based on what he has read, seen, or heard. He will often have a great deal of information to use in reaching his conclusions and forming his opinions and feelings. As a result, some of his conclusions are correct and some are wrong.
He will rarely consider someone else's point of view if he does not consider them to be an "expert." The fewer people he sees as experts, the more behavioral difficulty you will see. He might consider teachers and others to be experts, but his moms and dads will rarely be seen as such. Therefore, he will argue with you about your opinions if different from his own. He thinks that his opinion is as good as yours, so he chooses his. This represents his rigid thinking. He finds it difficult to be flexible and consider alternate views, especially if he has already reached a conclusion. New ideas can be difficult to accept ("I'd rather do it the way I've always done it"). Being forced to think differently can cause a lot of anxiety.
You must never overestimate your Aspergers youngster's understanding of a situation because of his high intellectual ability or his other strengths. He is a boy who needs to figure out how the world works. He needs a road map and the set of instructions, one example at a time.
Frames of Reference—
In trying to understand how the world works, your youngster tries to make sense of your explanations, but sometimes is not able to do this. As a result, your effort at intervening falls short. This can occur because your explanation has no meaning. Each Aspergers youngster can only understand things for which they have a frame of reference, meaning they have a picture or idea about this from other sources or from prior discussions. They cannot understand what you will tell them without this frame of reference. For example, when I asked a teenage boy if he missed his moms and dads when he was at overnight camp for a week, he replied that it was not all that long. When I asked him again if he missed them, he said he could e-mail them whenever he wanted. After my third attempt to get an answer he finally said to me, "I can't answer that question. Since I have never missed anyone before, I have nothing against which I can compare my feelings to know what missing feels like." In the next few chapters we will explain how to give your youngster or adolescent a new frame of reference.
Preferred and Non-preferred Activities—
For all Aspergers individuals, life tends to be divided into two categories – preferred and non-preferred activities. Preferred activities are those things he engages in frequently and with great intensity. He seeks them out without any external motivation. However, not all of his preferred activities are equal. Some are much more highly desired and prized. An activity that is lower on the list can never be used as a motivator for one that is higher. For example, you cannot get him to substitute his video game playing by offering a food reward if the game playing is higher on his list.
Any activity that is not preferred can be considered non-preferred. They are less desirable and many are avoided. The lower they are on the list of desirability, the more he will resist or avoid doing them. Sometimes an activity or task becomes non-preferred because it is made to compete with one that is much more highly valued. For example, taking a bath could be enjoyable, but if your youngster is reading, and reading is higher on his list, he will resist or throw a tantrum.
Preferred and non-preferred activities are always problem areas. Your youngster or teen will always want to engage in preferred activities even when you have something more important for him to do. He does not want to end preferred activities and your attempts to have him end them can produce upset of one kind or another. On the other hand, trying to get him to do non-preferred activities, such as interacting socially, can also be difficult. If many non-preferred elements are combined together, the problem can become a nightmare, such as with homework.
The Aspergers youngster rarely has activities he just likes. He tends to either love or hate an activity. The middle ground is usually missing. Teaching a middle ground or shades of gray can be a goal and will be discussed later. Also, as you try to teach him something new, you will encounter resistance because you are asking him to do something that's not a preferred activity. But, as he outgrows younger interests, he will need to learn new ones in order to have some common interests with his peers. He needs to experience new things to see if he likes them, but may not want to do this just because you're asking him to do something new. He already has his list of preferred interests and will rarely see the need for anything new. Quite often, his preferred list will include computer or video games. However, the more he is on the computer or the more he plays video games, the less available he is to be in the real world and learn something new. Most likely, you will have to control his access to preferred activities if new ones are to be introduced.
Obsessive-Compulsive Behaviors and Anxiety—
Obsessive-compulsive issues, also referred to as rituals, rigidity, perseverations, rules, or black-and-white thinking, originate in the Aspergers person's difficulty understanding the world around him. This creates anxiety, the underlying cause for his obsessive-compulsive behaviors. You will see anxiety in many different ways, depending on how your youngster manifests it. Some kids will show it in obvious ways, such as crying, hiding under furniture, or clinging to you. Others show it by trying to control the situation and bossing people around. Some may hit or throw a tantrum. Some may act silly. No matter how your youngster displays his anxiety, you need to recognize that it is there and not assume it is due to some other cause such as attention seeking or just plain misbehavior.
Anxiety can occur for the smallest reason. Don't judge anxiety-producing situations by your own reaction to an event. Your youngster will be much more sensitive to situations than you will be, and often there will be no logical reason for his anxiety. Something that you would be anxious about causes no anxiety in your youngster, while a small event causes him to be quite anxious. When events change, he never knows what is going to come next and he becomes confused and upset, leading to some form of inappropriate behavior.
Your youngster's first reaction is to try to reduce or eliminate his anxiety. He must do something, and one of the most effective means is to take all changes, uncertainty, and variability out of the equation. This can be accomplished by obsessions. If everything is done a certain way, if there is a definite and unbreakable rule for every event, and if everyone does as he wishes, everything will be fine. Anxiety is then diminished or reduced, and no upset, tantrums, or meltdowns occur.
Unfortunately, it is virtually impossible to do this in the real world. Nevertheless, anxiety needs to be dealt with in some manner. This is the first order of business in planning for many interventions. If you move ahead before this has been settled, it will continue to be a significant interfering factor. Let's look at some examples of this.
Sam, age seventeen, won't leave the house because he wants to have his nails in a certain condition. This condition requires many hours of grooming that interfere with sleeping, eating, and doing just about anything else. This is obsessive-compulsive behavior. Any attempt to get him to leave the house or stop his nail maintenance causes anxiety and is rarely successful.
Anytime Max, age eleven, hears an answer that he does not like, he becomes upset. If he asks a question or makes a request and the other person's response is not what he expected, he starts to argue with them, often acting out physically. He must have certain answers that are to his liking. This is rigidity in thought and it is also obsessive-compulsive.
Each of these cases has a cognitive and a behavioral component, and both must be considered. Each youngster must learn to get "unstuck" or let go of an issue and move on. They also need to learn how to change their thinking so that it doesn't become a problem to begin with.
Behavioral Manifestations of Anxiety—
• Becoming easily overwhelmed and having difficulty calming down.
• Creating their own set of rules for doing something.
• Demanding unrealistic perfection in their handwriting, or wanting to avoid doing any writing.
• Demonstrating unusual fears, anxiety, tantrums, and showing resistance to directions from others.
• Displaying a good deal of silly behaviors because they are anxious or do not know what to do in a situation.
• Eating a narrow range of foods.
• Having a narrow range of interests, and becoming fixated on certain topics and/or routines.
• Having trouble playing and socializing well with peers or avoiding socializing altogether. They prefer to be alone because others do not do things exactly as they do.
• Insisting on having things and/or events occur in a certain way.
• Intensely disliking loud noises and crowds.
• Lecturing others or engaging in a monologue rather than having a reciprocal conversation.
• Preferring to do the same things over and over.
• Reacting poorly to new events, transitions, or changes.
• Remaining in a fantasy world a good deal of the time and appearing unaware of events around them.
• Tending to conserve energy and put forth the least effort they can, except with highly preferred activities.
• Wanting things to go their way, when they want them to, no matter what anyone else may want. They may argue, throw a tantrum, ignore you, growl, refuse to yield, etc.
Black-and-White Thinking and Mind-blindness—
The obsessive-compulsive approach to life results in the narrow range of interests and insistence on set routines typical of an Aspergers youngster. However, it usually starts as a cognitive (thinking) issue before it becomes a behavioral one. Cognitive issues, such as the inability to take someone else's perspective (mind-blindness) and the lack of cognitive flexibility (black-and-white thinking), cause many of the behaviors we see. We know there is a cognitive element by looking at the youngster's behaviors. There is always some distress, anxiety, or obsession manifested in every inappropriate behavior.
As mentioned, your youngster's cognitive difficulties lead to inaccurate interpretations and understanding of the world. How someone interprets a situation determines how he will respond to it. Many times the interpretation of an event is either not an accurate one or not one that leads to positive or pro-social actions. If the event can be reinterpreted for him, it might lead to a more productive outcome. In doing this, we must first try to understand how the individual interprets a situation. All of the individual's behaviors are filtered through his perception of the way the world works.
Try to answer all the questions below to see which explanation fits the situation the best. Each of these questions represents a problematic way of thinking for your youngster. As a result of your questioning, it should become clearer that your youngster is engaging in a nonproductive interpretation and that correcting this faulty thinking with a more positive interpretation could lead to a more positive action. Remember, details are extremely important in trying to understand what is happening and what to do about it. Do not try to intervene until you understand, at least to a small degree, what is happening with your youngster. Changing thinking becomes a paramount issue, but one that is often neglected. However, successful changes in thinking will dramatically increase the success rate of any strategy you use.
Questions to Ask about Your Youngster's Behavior—
To help you determine the reasons why your youngster acts the way he does, you should ask yourself the following questions:
1. Because a situation was one way the first time, does he feel it has to be that way always? (Being rule bound.)
2. Does he need to be taught a better way to deal with a problem? (He does not understand the way the world works.)
3. Does he see only two choices to a situation rather than many options? (Black-and-white thinking.)
4. Has he made a rule that can't be followed? (He sees only one way to solve a problem. He cannot see alternatives.)
5. Is he blaming you for something that is beyond your control? (He feels that you must solve the problem for him even when it involves issues you have no control over.)
6. Is he exaggerating the importance of an event? There are no small events, everything that goes wrong is a catastrophe. (Black-and-white thinking.)
7. Is he expecting perfection in himself? (Black-and-white thinking.)
8. Is he misunderstanding what is happening and assuming something that isn't true? (Misinterpretation.)
9. Is he stuck on an idea and can't let it go? (He does not know how to let go and move on when there is a problem.)
My Aspergers Child: Preventing Meltdowns and Tantrums in Aspergers Children and Teens
Wednesday, March 24, 2010
Why Aspergers Children Should Meditate
The development of controlled focus by youngsters who are within the autism spectrum, specifically Aspergers, is always a matter of great concern to parents. Without the ability to direct their focus and concentration where they have need of it, our children are effectively disabled. In adult life, we need to be able to remember to pay bills and remember instructions from employers. Without the ability to self-regulate this is extremely difficult. As a father with a son who falls within the spectrum of Aspergers, it’s a subject I have given a great deal of thought and research. He is also approaching his teen years, which are difficult for everyone. I don't want him to lose his originality, either, and it is a tough line to walk.
My concern is not whether he’ll go to college or become President, but whether (once married) he will make his wife miserable with his lack of empathy. I wonder whether anyone will hire him, even at minimum wage, if he can’t stay on task. It’s not that he’s not capable of working or listening, but that he doesn’t start unless constantly and continually prompted to do so. This is a serious handicap.
I meditate myself and have long thought that training the mind in methods of concentration would help him immensely. At first I thought that sitting still would be the biggest problem, but once we started doing it together I discovered that the abstract nature of the instructions were a far more serious barrier.
It should be noted that in this case of using meditation for a specific therapy, it should be practiced as a family ideally or at least with one parent. Making a child with this syndrome sit still for extended periods of time by himself will do little for concentration and will probably increase frustration with the practice. To them, it would be like mild torture.
If you are not a meditator yourself, I recommend practicing meditation yourself for at least a month to understand how it works, preferably without discussing it with the youngster. By doing it first yourself and lending an air of mystery to it by not explaining what you are doing often (as with my son) inspires the youngster to ask questions. By allowing him to participate in a “grownup” activity, it also lent an air of importance and gravity to the activity that helped with the act of sitting. Take some deep relaxing breaths as you settle with a smile on your face- maybe a little exaggerated- within view of where the youngster is to arouse his curiosity. Remember- don’t answer any questions. At most, say something like “I’ll tell you when you’re a little older,” or “You’re not quite ready for this yet.” If you are a teacher, allowing them to see you practicing in this way briefly every day before you teach it to them has the same effect- to inspire curiosity.
There are many meditations, but I recommend beginning with the “concentration meditation”. It is by far the simplest to understand. Start small- ten minutes or so daily, and do it at a time of day when you are least tired and have some privacy. Simply rest your attention on the breath “touch point”- wherever you most feel your breath. For some it is the tip of the nose or the inside of the nostril or the upper lip, etc. Any time your mind wanders, let go of that thought without getting involved with it and come back to the touch point. That’s all there is to it to start.
The Meditation—
Color is the main focus in this meditation. It was recommended to me that you paint a large circle on a paper or a wall. Use white, yellow, black, or red paint, preferably oils or watercolor. Red indicates beauty, yellow is energy, black is relaxation, and white is peace. Use pure colors, red like a shiny bright apple, yellow like the sun, black or dark midnight blue, or pure white. No mixed colors - let them be bright and clear. The outside of the circle should be white or black for contrast, and the outer rim should be smooth and uniform, and brush strokes should be as invisible as possible to that one is not distracted by imperfections. I wondered for a moment if I couldn't get a printed circle, but it would feel different than one you made yourself. In a pinch, though, I’m sure a circle cut out or printed will do, if you don’t have time or money to do it the other way.
Hang it on the wall and assume meditation posture or sit on a chair in front of it- not too far to be able to easily observe other things, not too close to be uncomfortable- just close enough to have one's vision mostly dominated by it. Gaze into the middle of the circle for a few minutes and then close your eyes. Try and bring up as clearly as you can the circle. As your concentration improves, the color will appear in your mind more and more brilliant, eventually (with the red) appearing like a sparkling ruby alive with light. This also helps to increase the desire to practice because it is so incredibly beautiful. It does take time for this phenomenon to develop, but I have seen it firsthand. Don't tell the children this, though- they will think they are doing something wrong if they don't see it immediately. Allow it to arise on its own, and congratulate them if they see it. It can come startlingly clear, very suddenly, into focus. The first time I saw it, I gasped.
Communication on what, exactly, I wanted him to do in his mind was a bit of a problem. Every youngster is different, but this is what worked with my son. I got him to picture a cartoon character with his imagination, doing something silly. Saying “make it appear in your mind” only confused him. Make sure you use language the youngster can already understand, as new terms and concepts are going to get in the way of the meditation. Then, I told him to replace that picture in his imagination with the circle, and to just work on bringing that object clearly into his mind, make that red as bright as possible. Don’t use imagery the youngster usually obsesses about, like trains in many cases, because they will likely stay on that image instead of the meditation object (color circle).
Start for one minute and add a minute or two a week, no more, even if they ask for more time (my son did). Use a timer. Allow the youngster earn the extra time with compliance. After the first few weeks, they look forward to the time meditating as the most relaxing time of the day. Some results in more skillfully directed focus should be apparent, if you are doing it correctly, in a few weeks. This is not a replacement for speech therapy or occupational therapy, just an extra tool that will hopefully make it easier for your youngster to gain control of his or her mind, and skillfully use their most valuable tool.
Consistency is key! Make the time to do it every day (or night) or the youngster will see it as a game instead as a serious mental training. This can’t be equated with the “Quiet Game” that my parents used to play with me on long car trips. Allow the youngster to slowly realize that he is responsible for his own mind- no one can train it for him. This is, without a doubt, the best medicine.
Introducing: The Aspergers Comprehensive Handbook: Help for Parents with Aspergers Children
My concern is not whether he’ll go to college or become President, but whether (once married) he will make his wife miserable with his lack of empathy. I wonder whether anyone will hire him, even at minimum wage, if he can’t stay on task. It’s not that he’s not capable of working or listening, but that he doesn’t start unless constantly and continually prompted to do so. This is a serious handicap.
I meditate myself and have long thought that training the mind in methods of concentration would help him immensely. At first I thought that sitting still would be the biggest problem, but once we started doing it together I discovered that the abstract nature of the instructions were a far more serious barrier.
It should be noted that in this case of using meditation for a specific therapy, it should be practiced as a family ideally or at least with one parent. Making a child with this syndrome sit still for extended periods of time by himself will do little for concentration and will probably increase frustration with the practice. To them, it would be like mild torture.
If you are not a meditator yourself, I recommend practicing meditation yourself for at least a month to understand how it works, preferably without discussing it with the youngster. By doing it first yourself and lending an air of mystery to it by not explaining what you are doing often (as with my son) inspires the youngster to ask questions. By allowing him to participate in a “grownup” activity, it also lent an air of importance and gravity to the activity that helped with the act of sitting. Take some deep relaxing breaths as you settle with a smile on your face- maybe a little exaggerated- within view of where the youngster is to arouse his curiosity. Remember- don’t answer any questions. At most, say something like “I’ll tell you when you’re a little older,” or “You’re not quite ready for this yet.” If you are a teacher, allowing them to see you practicing in this way briefly every day before you teach it to them has the same effect- to inspire curiosity.
There are many meditations, but I recommend beginning with the “concentration meditation”. It is by far the simplest to understand. Start small- ten minutes or so daily, and do it at a time of day when you are least tired and have some privacy. Simply rest your attention on the breath “touch point”- wherever you most feel your breath. For some it is the tip of the nose or the inside of the nostril or the upper lip, etc. Any time your mind wanders, let go of that thought without getting involved with it and come back to the touch point. That’s all there is to it to start.
The Meditation—
Color is the main focus in this meditation. It was recommended to me that you paint a large circle on a paper or a wall. Use white, yellow, black, or red paint, preferably oils or watercolor. Red indicates beauty, yellow is energy, black is relaxation, and white is peace. Use pure colors, red like a shiny bright apple, yellow like the sun, black or dark midnight blue, or pure white. No mixed colors - let them be bright and clear. The outside of the circle should be white or black for contrast, and the outer rim should be smooth and uniform, and brush strokes should be as invisible as possible to that one is not distracted by imperfections. I wondered for a moment if I couldn't get a printed circle, but it would feel different than one you made yourself. In a pinch, though, I’m sure a circle cut out or printed will do, if you don’t have time or money to do it the other way.
Hang it on the wall and assume meditation posture or sit on a chair in front of it- not too far to be able to easily observe other things, not too close to be uncomfortable- just close enough to have one's vision mostly dominated by it. Gaze into the middle of the circle for a few minutes and then close your eyes. Try and bring up as clearly as you can the circle. As your concentration improves, the color will appear in your mind more and more brilliant, eventually (with the red) appearing like a sparkling ruby alive with light. This also helps to increase the desire to practice because it is so incredibly beautiful. It does take time for this phenomenon to develop, but I have seen it firsthand. Don't tell the children this, though- they will think they are doing something wrong if they don't see it immediately. Allow it to arise on its own, and congratulate them if they see it. It can come startlingly clear, very suddenly, into focus. The first time I saw it, I gasped.
Communication on what, exactly, I wanted him to do in his mind was a bit of a problem. Every youngster is different, but this is what worked with my son. I got him to picture a cartoon character with his imagination, doing something silly. Saying “make it appear in your mind” only confused him. Make sure you use language the youngster can already understand, as new terms and concepts are going to get in the way of the meditation. Then, I told him to replace that picture in his imagination with the circle, and to just work on bringing that object clearly into his mind, make that red as bright as possible. Don’t use imagery the youngster usually obsesses about, like trains in many cases, because they will likely stay on that image instead of the meditation object (color circle).
Start for one minute and add a minute or two a week, no more, even if they ask for more time (my son did). Use a timer. Allow the youngster earn the extra time with compliance. After the first few weeks, they look forward to the time meditating as the most relaxing time of the day. Some results in more skillfully directed focus should be apparent, if you are doing it correctly, in a few weeks. This is not a replacement for speech therapy or occupational therapy, just an extra tool that will hopefully make it easier for your youngster to gain control of his or her mind, and skillfully use their most valuable tool.
Consistency is key! Make the time to do it every day (or night) or the youngster will see it as a game instead as a serious mental training. This can’t be equated with the “Quiet Game” that my parents used to play with me on long car trips. Allow the youngster to slowly realize that he is responsible for his own mind- no one can train it for him. This is, without a doubt, the best medicine.
Introducing: The Aspergers Comprehensive Handbook: Help for Parents with Aspergers Children
Parenting Aspergers Children: Newsletter - 3/22/10
In today’s newsletter, I want to share with you the text version of a recent “phone-in” question- and-answer session. Also, I’ve included a great article about The Education System by Matthew Readman (a talented young writer who has Aspergers).
Ready? O.K. Let’s go…
What are some common signs or symptoms?
The most distinguishing symptom of AS is a youngster’s obsessive interest in a single object or topic to the exclusion of any other. Some kids with AS have become experts on vacuum cleaners, makes and models of cars, even objects as odd as deep fat fryers. Kids with AS want to know everything about their topic of interest and their conversations with others will be about little else. Their expertise, high level of vocabulary, and formal speech patterns make them seem like little professors.
Kids with AS will gather enormous amounts of factual information about their favorite subject and will talk incessantly about it, but the conversation may seem like a random collection of facts or statistics, with no point or conclusion.
Their speech may be marked by a lack of rhythm, an odd inflection, or a monotone pitch. Kids with AS often lack the ability to modulate the volume of their voice to match their surroundings. For example, they will have to be reminded to talk softly every time they enter a library or a movie theatre.
Unlike the severe withdrawal from the rest of the world that is characteristic of autism, kids with AS are isolated because of their poor social skills and narrow interests. In fact, they may approach other people, but make normal conversation impossible by inappropriate or eccentric behavior, or by wanting only to talk about their singular interest.
Kids with AS usually have a history of developmental delays in motor skills such as pedaling a bike, catching a ball, or climbing outdoor play equipment. They are often awkward and poorly coordinated with a walk that can appear either stilted or bouncy.
Many kids with AS are highly active in early youngsterhood, and then develop anxiety or depression in young adulthood. Other conditions that often co-exist with AS are ADHD, tic disorders (such as Tourette syndrome), depression, anxiety disorders, and OCD.
What causes AS? Is it genetic?
Current research points to brain abnormalities as the cause of AS. Using advanced brain imaging techniques, scientists have revealed structural and functional differences in specific regions of the brains of normal versus AS kids. These defects are most likely caused by the abnormal migration of embryonic cells during fetal development that affects brain structure and “wiring” and then goes on to affect the neural circuits that control thought and behavior.
For example, one study found a reduction of brain activity in the frontal lobe of AS kids when they were asked to respond to tasks that required them to use their judgment. Another study found differences in activity when kids were asked to respond to facial expressions. A different study investigating brain function in adults with AS revealed abnormal levels of specific proteins that correlate with obsessive and repetitive behaviors.
Scientists have always known that there had to be a genetic component to AS and the other ASDs because of their tendency to run in families. Additional evidence for the link between inherited genetic mutations and AS was observed in the higher incidence of family members who have behavioral symptoms similar to AS but in a more limited form. For example, they had slight difficulties with social interaction, language, or reading.
A specific gene for AS, however, has never been identified. Instead, the most recent research indicates that there are most likely a common group of genes whose variations or deletions make an individual vulnerable to developing AS. This combination of genetic variations or deletions will determine the severity and symptoms for each individual with AS.
How is it diagnosed?
The diagnosis of AS is complicated by the lack of a standardized diagnostic screen or schedule. In fact, because there are several screening instruments in current use, each with different criteria, the same youngster could receive different diagnoses, depending on the screening tool the doctor uses.
To further complicate the issue, some doctors believe that AS is not a separate and distinct disorder. Instead, they call it high-functioning autism (HFA), and view it as being on the mild end of the ASD spectrum with symptoms that differ -- only in degree -- from classic autism. Some clinicians use the two diagnoses, AS or HFA, interchangeably. This makes gathering data about the incidence of AS difficult, since some kids will be diagnosed with HFA instead of AS, and vice versa.
Most doctors rely on the presence of a core group of behaviors to alert them to the possibility of a diagnosis of AS. These are:
• a lack of interactive play
• a lack of interest in peers
• abnormal eye contact
• aloofness
• the failure to turn when called by name
• the failure to use gestures to point or show
Some of these behaviors may be apparent in the first few months of a youngster’s life, or they may appear later. Problems in at least one of the areas of communication and socialization or repetitive, restricted behavior must be present before the age of 3.
The diagnosis of AS is a two-stage process. The first stage begins with developmental screening during a “well-youngster” check-up with a family doctor or pediatrician. The second stage is a comprehensive team evaluation to either rule in or rule out AS. This team generally includes a psychologist, neurologist, psychiatrist, speech therapist, and additional professionals who have expertise in diagnosing kids with AS.
The comprehensive evaluation includes neurologic and genetic assessment, with in-depth cognitive and language testing to establish IQ and evaluate psychomotor function, verbal and non-verbal strengths and weaknesses, style of learning, and independent living skills. An assessment of communication strengths and weaknesses includes evaluating non-verbal forms of communication (gaze and gestures); the use of non-literal language (metaphor, irony, absurdities, and humor); patterns of inflection, stress and volume modulation; pragmatics (turn-taking and sensitivity to verbal cues); and the content, clarity, and coherence of conversation. The physician will look at the testing results and combine them with the youngster’s developmental history and current symptoms to make a diagnosis.
Are there treatments available?
The ideal treatment for AS coordinates therapies that address the three core symptoms of the disorder: poor communication skills, obsessive or repetitive routines, and physical clumsiness. There is no single best treatment package for all kids with AS, but most professionals agree that the earlier the intervention, the better.
An effective treatment program builds on the youngster’s interests, offers a predictable schedule, teaches tasks as a series of simple steps, actively engages the youngster’s attention in highly structured activities, and provides regular reinforcement of behavior. This kind of program generally includes:
• cognitive behavioral therapy, a type of “talk” therapy that can help the more explosive or anxious kids to manage their emotions better and cut back on obsessive interests and repetitive routines
• medication, for co-existing conditions such as depression and anxiety
• occupational or physical therapy, for kids with sensory integration problems or poor motor coordination
• parent training and support, to teach moms and dads behavioral techniques to use at home
• social skills training, a form of group therapy that teaches kids with AS the skills they need to interact more successfully with other kids
• specialized speech/language therapy, to help kids who have trouble with the pragmatics of speech – the give and take of normal conversation
Do kids with AS get better? What happens when they become adults?
With effective treatment, kids with AS can learn to cope with their disabilities, but they may still find social situations and personal relationships challenging. Many adults with AS are able to work successfully in mainstream jobs, although they may continue to need encouragement and moral support to maintain an independent life.
Since there are so many different forms of ASD, understanding the genetic basis of each opens the door to opportunities for more precise diagnosis and treatment. Knowing the genetic profile of a particular disorder could mean early identification of those at risk, and early intervention when treatments and therapies are likely to be the most successful.
Where can I get more information?
For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:
MAAP Services for Autism, Asperger Syndrome, and PDD
P.O. Box 524
Crown Point, IN 46307
info@maapservices.org
http://www.maapservices.org
Tel: 219-662-1311
Fax: 219-662-0638
Autism Network International (ANI)
P.O. Box 35448
Syracuse, NY 13235-5448
jisincla@syr.edu
http://www.ani.ac
Autism Society of America
7910 Woodmont Ave.
Suite 300
Bethesda, MD 20814-3067
http://www.autism-society.org
Tel: 301-657-0881 800-3AUTISM (328-8476)
Fax: 301-657-0869
Autism Research Institute (ARI)
4182 Adams Avenue
San Diego, CA 92116
director@autism.com
http://www.autismresearchinstitute.com
Tel: 866-366-3361
Fax: 619-563-6840
National Institute of Mental Health (NIMH)
National Institutes of Health, DHHS
6001 Executive Blvd. Rm. 8184, MSC 9663
Bethesda, MD 20892-9663
nimhinfo@nih.gov
http://www.nimh.nih.gov
Tel: 301-443-4513/866-415-8051 301-443-8431 (TTY)
Fax: 301-443-4279
National Institute on Deafness and Other Communication Disorders Information Clearinghouse
1 Communication Avenue
Bethesda, MD 20892-3456
nidcdinfo@nidcd.nih.gov
http://www.nidcd.nih.gov
Tel: 800-241-1044 800-241-1055 (TTD/TTY)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here’s a great article about The Education System by Matthew Readman (a talented young writer who has Aspergers):
This article is on our education system. I do not understand how our school system works. I have been told that every child has the right to an education. I believe in this fully. What I do not understand is why some children are treated differently than others. This year I started in a new school for enrichment studies. Almost everyone in my class has an Individual Evaluation Plan (IEP). This is a piece of paper you sit down with your parents and teachers to explain the problems you have and how your needs and difficulties are suppose to handled in the classroom. i.e. I need a safe place to go so I can calm down when I am angry. What gets me real mad is we have a student in our class who yells and disrespects the teacher. This student is thrown out of class almost every day. Does this upset me YES!!!! I guess you can say one of my “needs” is to follow orders, and it gets me mad when this child disrupts the class all the time.
As you would have guessed this kid and I are arch enemies. We believe in total opposite things. I believe you listen to the teacher, do your work and be quiet, as for him, the complete opposite. This kid also has a violence problem. When he gets mad he hits people. He has hit me quite a few times, and after the 5th time I finally hit him back. But who gets in trouble me!!!! Why, because I should have known better not to hit, because the kid who hit me has a “violent problem”.
This is what I don’t understand when does one child’s disability more important than someone else’s?
Why do teachers and principals allow so such misconduct in the school over one child? What about the rights of all the other children with IEP’s. Basically it comes down to in my mind is a school will attend to the needs of children who are violent (bullies), before a child who actually needs coaching. My mom always says “a squeaky wheel always gets heard” Does this mean you have to be a total jerk in class so you can get the teachers full attention?
I know for a fact that my IEP and other students in our class are not being met. We are put in the back burner to this child. So what options do we have? If we complain I think our teacher will have nervous breakdown. She is getting close because she cannot control this child. Write a letter to the principal? We did this and explained that this child is ruining our learning environment. Again, the principal states very clearly every child has a right to an education. What I am hoping is if my readers can maybe give us some other suggestions how kids can fight the school system on their own without getting parents involved. We want to fight this on our own. Please add any comments or ideas on: MyAspergersChild.com.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hope this newsletter was helpful!
Also - If you haven’t downloaded my eBook on preventing meltdowns, you may to consider doing so – especially if your Asperger youngster has frequent and/or severe temper tantrums.
See you in a few days…
God bless you and your family,
Mark Hutten, M.A.
Ready? O.K. Let’s go…
What are some common signs or symptoms?
The most distinguishing symptom of AS is a youngster’s obsessive interest in a single object or topic to the exclusion of any other. Some kids with AS have become experts on vacuum cleaners, makes and models of cars, even objects as odd as deep fat fryers. Kids with AS want to know everything about their topic of interest and their conversations with others will be about little else. Their expertise, high level of vocabulary, and formal speech patterns make them seem like little professors.
Kids with AS will gather enormous amounts of factual information about their favorite subject and will talk incessantly about it, but the conversation may seem like a random collection of facts or statistics, with no point or conclusion.
Their speech may be marked by a lack of rhythm, an odd inflection, or a monotone pitch. Kids with AS often lack the ability to modulate the volume of their voice to match their surroundings. For example, they will have to be reminded to talk softly every time they enter a library or a movie theatre.
Unlike the severe withdrawal from the rest of the world that is characteristic of autism, kids with AS are isolated because of their poor social skills and narrow interests. In fact, they may approach other people, but make normal conversation impossible by inappropriate or eccentric behavior, or by wanting only to talk about their singular interest.
Kids with AS usually have a history of developmental delays in motor skills such as pedaling a bike, catching a ball, or climbing outdoor play equipment. They are often awkward and poorly coordinated with a walk that can appear either stilted or bouncy.
Many kids with AS are highly active in early youngsterhood, and then develop anxiety or depression in young adulthood. Other conditions that often co-exist with AS are ADHD, tic disorders (such as Tourette syndrome), depression, anxiety disorders, and OCD.
What causes AS? Is it genetic?
Current research points to brain abnormalities as the cause of AS. Using advanced brain imaging techniques, scientists have revealed structural and functional differences in specific regions of the brains of normal versus AS kids. These defects are most likely caused by the abnormal migration of embryonic cells during fetal development that affects brain structure and “wiring” and then goes on to affect the neural circuits that control thought and behavior.
For example, one study found a reduction of brain activity in the frontal lobe of AS kids when they were asked to respond to tasks that required them to use their judgment. Another study found differences in activity when kids were asked to respond to facial expressions. A different study investigating brain function in adults with AS revealed abnormal levels of specific proteins that correlate with obsessive and repetitive behaviors.
Scientists have always known that there had to be a genetic component to AS and the other ASDs because of their tendency to run in families. Additional evidence for the link between inherited genetic mutations and AS was observed in the higher incidence of family members who have behavioral symptoms similar to AS but in a more limited form. For example, they had slight difficulties with social interaction, language, or reading.
A specific gene for AS, however, has never been identified. Instead, the most recent research indicates that there are most likely a common group of genes whose variations or deletions make an individual vulnerable to developing AS. This combination of genetic variations or deletions will determine the severity and symptoms for each individual with AS.
How is it diagnosed?
The diagnosis of AS is complicated by the lack of a standardized diagnostic screen or schedule. In fact, because there are several screening instruments in current use, each with different criteria, the same youngster could receive different diagnoses, depending on the screening tool the doctor uses.
To further complicate the issue, some doctors believe that AS is not a separate and distinct disorder. Instead, they call it high-functioning autism (HFA), and view it as being on the mild end of the ASD spectrum with symptoms that differ -- only in degree -- from classic autism. Some clinicians use the two diagnoses, AS or HFA, interchangeably. This makes gathering data about the incidence of AS difficult, since some kids will be diagnosed with HFA instead of AS, and vice versa.
Most doctors rely on the presence of a core group of behaviors to alert them to the possibility of a diagnosis of AS. These are:
• a lack of interactive play
• a lack of interest in peers
• abnormal eye contact
• aloofness
• the failure to turn when called by name
• the failure to use gestures to point or show
Some of these behaviors may be apparent in the first few months of a youngster’s life, or they may appear later. Problems in at least one of the areas of communication and socialization or repetitive, restricted behavior must be present before the age of 3.
The diagnosis of AS is a two-stage process. The first stage begins with developmental screening during a “well-youngster” check-up with a family doctor or pediatrician. The second stage is a comprehensive team evaluation to either rule in or rule out AS. This team generally includes a psychologist, neurologist, psychiatrist, speech therapist, and additional professionals who have expertise in diagnosing kids with AS.
The comprehensive evaluation includes neurologic and genetic assessment, with in-depth cognitive and language testing to establish IQ and evaluate psychomotor function, verbal and non-verbal strengths and weaknesses, style of learning, and independent living skills. An assessment of communication strengths and weaknesses includes evaluating non-verbal forms of communication (gaze and gestures); the use of non-literal language (metaphor, irony, absurdities, and humor); patterns of inflection, stress and volume modulation; pragmatics (turn-taking and sensitivity to verbal cues); and the content, clarity, and coherence of conversation. The physician will look at the testing results and combine them with the youngster’s developmental history and current symptoms to make a diagnosis.
Are there treatments available?
The ideal treatment for AS coordinates therapies that address the three core symptoms of the disorder: poor communication skills, obsessive or repetitive routines, and physical clumsiness. There is no single best treatment package for all kids with AS, but most professionals agree that the earlier the intervention, the better.
An effective treatment program builds on the youngster’s interests, offers a predictable schedule, teaches tasks as a series of simple steps, actively engages the youngster’s attention in highly structured activities, and provides regular reinforcement of behavior. This kind of program generally includes:
• cognitive behavioral therapy, a type of “talk” therapy that can help the more explosive or anxious kids to manage their emotions better and cut back on obsessive interests and repetitive routines
• medication, for co-existing conditions such as depression and anxiety
• occupational or physical therapy, for kids with sensory integration problems or poor motor coordination
• parent training and support, to teach moms and dads behavioral techniques to use at home
• social skills training, a form of group therapy that teaches kids with AS the skills they need to interact more successfully with other kids
• specialized speech/language therapy, to help kids who have trouble with the pragmatics of speech – the give and take of normal conversation
Do kids with AS get better? What happens when they become adults?
With effective treatment, kids with AS can learn to cope with their disabilities, but they may still find social situations and personal relationships challenging. Many adults with AS are able to work successfully in mainstream jobs, although they may continue to need encouragement and moral support to maintain an independent life.
Since there are so many different forms of ASD, understanding the genetic basis of each opens the door to opportunities for more precise diagnosis and treatment. Knowing the genetic profile of a particular disorder could mean early identification of those at risk, and early intervention when treatments and therapies are likely to be the most successful.
Where can I get more information?
For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:
MAAP Services for Autism, Asperger Syndrome, and PDD
P.O. Box 524
Crown Point, IN 46307
info@maapservices.org
http://www.maapservices.org
Tel: 219-662-1311
Fax: 219-662-0638
Autism Network International (ANI)
P.O. Box 35448
Syracuse, NY 13235-5448
jisincla@syr.edu
http://www.ani.ac
Autism Society of America
7910 Woodmont Ave.
Suite 300
Bethesda, MD 20814-3067
http://www.autism-society.org
Tel: 301-657-0881 800-3AUTISM (328-8476)
Fax: 301-657-0869
Autism Research Institute (ARI)
4182 Adams Avenue
San Diego, CA 92116
director@autism.com
http://www.autismresearchinstitute.com
Tel: 866-366-3361
Fax: 619-563-6840
National Institute of Mental Health (NIMH)
National Institutes of Health, DHHS
6001 Executive Blvd. Rm. 8184, MSC 9663
Bethesda, MD 20892-9663
nimhinfo@nih.gov
http://www.nimh.nih.gov
Tel: 301-443-4513/866-415-8051 301-443-8431 (TTY)
Fax: 301-443-4279
National Institute on Deafness and Other Communication Disorders Information Clearinghouse
1 Communication Avenue
Bethesda, MD 20892-3456
nidcdinfo@nidcd.nih.gov
http://www.nidcd.nih.gov
Tel: 800-241-1044 800-241-1055 (TTD/TTY)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here’s a great article about The Education System by Matthew Readman (a talented young writer who has Aspergers):
This article is on our education system. I do not understand how our school system works. I have been told that every child has the right to an education. I believe in this fully. What I do not understand is why some children are treated differently than others. This year I started in a new school for enrichment studies. Almost everyone in my class has an Individual Evaluation Plan (IEP). This is a piece of paper you sit down with your parents and teachers to explain the problems you have and how your needs and difficulties are suppose to handled in the classroom. i.e. I need a safe place to go so I can calm down when I am angry. What gets me real mad is we have a student in our class who yells and disrespects the teacher. This student is thrown out of class almost every day. Does this upset me YES!!!! I guess you can say one of my “needs” is to follow orders, and it gets me mad when this child disrupts the class all the time.
As you would have guessed this kid and I are arch enemies. We believe in total opposite things. I believe you listen to the teacher, do your work and be quiet, as for him, the complete opposite. This kid also has a violence problem. When he gets mad he hits people. He has hit me quite a few times, and after the 5th time I finally hit him back. But who gets in trouble me!!!! Why, because I should have known better not to hit, because the kid who hit me has a “violent problem”.
This is what I don’t understand when does one child’s disability more important than someone else’s?
Why do teachers and principals allow so such misconduct in the school over one child? What about the rights of all the other children with IEP’s. Basically it comes down to in my mind is a school will attend to the needs of children who are violent (bullies), before a child who actually needs coaching. My mom always says “a squeaky wheel always gets heard” Does this mean you have to be a total jerk in class so you can get the teachers full attention?
I know for a fact that my IEP and other students in our class are not being met. We are put in the back burner to this child. So what options do we have? If we complain I think our teacher will have nervous breakdown. She is getting close because she cannot control this child. Write a letter to the principal? We did this and explained that this child is ruining our learning environment. Again, the principal states very clearly every child has a right to an education. What I am hoping is if my readers can maybe give us some other suggestions how kids can fight the school system on their own without getting parents involved. We want to fight this on our own. Please add any comments or ideas on: MyAspergersChild.com.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Hope this newsletter was helpful!
Also - If you haven’t downloaded my eBook on preventing meltdowns, you may to consider doing so – especially if your Asperger youngster has frequent and/or severe temper tantrums.
See you in a few days…
God bless you and your family,
Mark Hutten, M.A.
Parenting Aspergers Children: Newsletter - 3/18/10
Question from the parent—
Hi, J is 9 and recently diagnosed ASD, TS, Visual Impairment.
We are having extreme meltdowns right now. I just don't know what is real and what is not anymore. Before the diagnosis I was kind of sure what was just bad behaviour and what might be ASD related and I felt he was pushing the limits and most of the time felt he knew what he was doing.
I'll give the scenario of tonights meltdown (bear with me):
J goes to kitchen to make a milkshake, there is enough for one more only, so he shots out to his 3 yr old sister (who he bullies dawn to dusk) that he is having the last one and there will be no more left. Not happy with that he brings the empty pot in and shows her its empty. I tell him to go out of the room and stop winding his sister up. He returns with his milkshake and sits on arm of sofa and starts rocking his legs and I can sense he is looking at me whilst i'm trying to ignore it waiting for me to react. In the end I did and asked him to move to the other sofa which he did and then started blowing bubbles.
His dad asks him to stop and he throws his head back and in a baby voice shouts back No, Make me, i'm not doing, shut up punk. Then he hides himself behind the curtain and I get up and physically take him out of the room and shut the door behind him.
He then loses control, kicks, punches everything and anything on his way up the stairs then stands at the top banging his head against the wall, kicking the walls and biting the bannisters. Recently he said he doesn't want to be left alone when he is like that so I go to him and try to comfort him but he is too far gone and it needs to runs its course. His whole body is stiff and he can't scream any louder he is so angry.
Eventually, after about 30 mins he is calm enough to talk to and comfort.
This seems to start with such a trivial thing, and I could ignore the bad behaviour and then there would be no meltdown but I don't feel that is the right thing to do. I end up looking at him and haven't a clue what to do for him, everything I try just doesn't make any difference and all the time thinking my god if I dont get control here soon it will be too late to make any impact.
Is this just bad behaviour or is this ASD/TS related. I can't find any useful book which will help me with this. I am being referred to my local CAMHS, will they be able to help with this? If I knew it was just plain bad behaviour I can be tougher but what are the meltdowns doing to J, surely it can't be a good thing for him?
Any help at all would be greatly appreciated.
XX
Answer from an adult with Aspergers—
A meltdown is a condition where the Aspie temporarily loses control due to emotional responses to environmental factors.
It generally appears that the aspie has lost control over a single and specific issue however this is very rarely the case. Usually, the problem is the cumulation of a number of irritations which could span a fairly long period of time, particularly given the strong long-term memory facilities of the aspie.
Aspies don't tend to give a lot of clues that they are very irritated;
* their facial expressions very often will not convey the irritation
* their vocal tones will often remain flat even when they are fairly annoyed.
* Some things which annoy aspies would not be considered annoying to neurotypicals. This makes NT's less likely to pick up on a potential problem.
* Often Aspie grievances are aired as part of their normal conversation and may even be interpreted by NTs as part of their standard whinge.
The meltdown appears to most people as a tantrum or dummy spit. There are marked differences between adults and children.
Children tend to flop onto the ground and shout, scream or cry. Quite often, they will display violent behaviour such as hitting or kicking.
In adults, due to social pressures, violent behaviour in public is less common. Shouting outbursts or emotional displays however can occur. More often though, it leads to depression and the aspie simply retreats into themselves and abandons social contact.
Some aspies describe the meltdown as a red or grey band across the eyes. I've certainly experienced this. There is a loss of control and a feeling of being a powerless observer outside the body. This can be dangerous as the aspie may strike out, particularly if the instigator is nearby or if they are taunted during a meltdown.
Sometimes, depression is the only outward visible sign of a meltdown. At other times, depression results when the aspie leaves their meltdown state and confronts the results of the meltdown. The depression is a result of guilt over abusive, shouting or violent behaviour. I will cover depression in a different post.
There's not a great deal of that you can do when a meltdown occurs in a very young child. Probably the very best thing that you can do at their youngest ages is to train yourself to recognize a meltdown before it happens and take steps to avoid it.
Example: Aspies are quite possessive about their food and my youngest will sometimes decide that he does not want his meat to be cut up for him. When this happens, taking his plate from him and cutting his meat could cause a tantrum. The best way to deal with this is to avoid touching it for the first part of the meal until he starts to want your involvement. When this occurs, instead of taking his plate from him, it is more effective to lean over and help him to cut the first piece. Once he has cut the first piece with help, he will often allow the remaining pieces to be cut for him though I would still recommend that his plate not be moved.
Once the child reaches an age where they can understand, probably around seven years give or take a few. You can work on explaining the situation. One way you could do this would be to discreetly videotape a meltdown and allow them to watch it at a later date. You could then discuss the incident, explain why it isn't socially acceptable and give them some alternatives.
When I was little, I remember that the single best motivation for keeping control was once, when my mother called me in after play and talked about the day. In particular, she highlighted an incident where I had fallen over and hurt myself. She said, "did you see how your friend started to go home as soon as you fell over because they were scared that you were going to have a tantrum". She went on to say, "When you got up and laughed, they were so happy that they came racing back. I'm proud of you for not losing your temper".
I carried this with me for years later and would always strive to contain myself. I wouldn't always succeed but at least I was trying.
One of the most important things to realize is that Meltdowns are part of the Aspergers condition. They can't avoid them, merely try to reduce the damage. Punishing an aspie for a meltdown is like punishing someone for swearing when they hit their thumb with a hammer. It won't do any good whatsoever and can only serve to increase the distance between you and your child.
In addition, meltdowns aren't wholly caused by the current scenario but are usually the result of an overwhelming number of other issues. The one which "causes" the meltdown is the "straw that breaks the camels back". Unless you're a mind reader, you won't necessarily know what the other factors are and your aspie child may not be able to fully communicate the problem.
Meltdowns are part and parcel of Aspergers - they are NOT the result of poor parenting.
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See ya next week with another newsletter,
Mark Hutten, M.A.
P.S. Have you checked out The Aspergers Comprehensive Handbook? I think you’ll be really pleased with it – give it a try! :)
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