Aspergers - A Lonely Life

An outline of what Aspergers Syndrome is and how it will affect your child and you as a family in laymans terms.

No-one is really sure what causes Aspergers Syndrome though it is thought to be genetic. It was first described by paediatrician Dr Hans Asperger of Austria in 1944 that the syndrome is named after. It has since been classed as part of the autistic spectrum disorder. Some call it high functioning autism. It affects boys three to four times more often than girls. What is definitely recommended if your child has been diagnosed with Aspergers Syndrome is to read up on it as much as you can. There are many books and programs available (see below for some) but you can't help your child if you don't understand his problem. I was once asked (by my mother) if I really wanted my son to ‘wear a label' for the rest of his life. My answer was, and will always be, if I don't know what's wrong with him I can't help him to manage his condition. Unfortunately there is no cure for Aspergers Syndrome but there is a wealth of help for you and your child.

The earlier you are able to get a definitive diagnosis and start working on helping and supporting your child, the better he will be in the long term. It might not be easy at times, but it will definitely be worth it and will pay you back a thousandfold.

The Pre-School Asperger Child

It is an ‘invisible' disorder in that there are no disfiguring facial or body aspects - it can't be immediately ‘seen' the way for example, a Down's Syndrome child can be. This can make it harder for parents to pick up on when their child is young. Asperger Syndrome children can be and often are very loving towards their family, reaching most of their developmental milestones at the appropriate age. The thing that makes them ‘different' is their social interaction with their peers.

Aspergers Syndrome children will usually be loners, not wanting to join in with and play with others in their age group. This can be noticed at playgroup or any other social situation that they may be taken to. Sometimes they will have one good friend and totally ignore the other children, preferring to play quietly by themselves when the others stop for ‘playlunch'. Speech may be delayed or not easily understood by those outside the immediate family. Co-ordination is often poor so they may be very messy eaters when young, as they can't quite manage getting the fork or spoon to the mouth without spilling some of the food. Catching, kicking and throwing skills may also be poor and/or delayed. Toilet training for the parent of an Asperger child can be very hard as the ‘message' just doesn't seem to ‘sink in'. You may place your three year old child on the potty just after a meal and drink with no ‘result' only to have them wet themselves (or worse) 15 minutes later. It takes a lot of patience and positive reinforcement to toilet train your Asperger toddler.

Most young children will not want to leave something they perceive as being fun (eg playgroup) but the Asperger toddler will continue to complain about it for far longer than normal. They cannot understand that it's time to go. The ‘me' stage seems to last longer with them and explanations must be clear and concise and repetitive. This aspect will sometimes last until the child is in middle primary school.

When giving instructions to your child (up to age 10 or 11), it is necessary that they only be given one instruction at a time. For example, you can't tell them to go to the toilet and then clean their teeth and get ready for bed. This is too much information for them to absorb at once. They will forget some of it and leave out the toilet or teeth and just get ready for bed. It needs to be ‘have you been to the toilet, good, now go and clean your teeth' type of instruction. Eventually the message gets through and the repetitive nature of doing the same things every night makes it a habit, but never get complacent, they are just as likely to start forgetting.

To read the story of a child with Aspergers Syndrome and how his parents dealt with it and helped him, visit The Asperger Syndrome Child and Living With An Aspergers Syndrome Child.




Your Asperger Child at Junior School

Unless you child has the double whammy of Aspergers and ADHD (Attention Deficit Hyperactivity Disorder) with some form of aggression associated with it, be prepared for teasing and bullying. Because the Asperger child doesn't pick up on social clues or read body language, they are liable to invade someone else's personal space, butt in when others are talking, not be able to communicate easily with their peers, not look people in the eye, not understand facial expressions correctly or understand the conventions of the classroom/playground, they are prime candidates for teasing and bullying. School can be, and often is, torture for Aspergers children as they don't understand why they're getting picked on all the time. It is necessary for you, as the parent, to speak to the headmaster and your child's teacher at the beginning of each year and make sure they understand the problems and difficulties your child has. Allowances must be made for your Asperger child. He doesn't need ‘special treatment' as such (although some children will work better with an aide, more on this later), but your child does have specific problems and needs help with them. Some children might excel at reading and maths and need supplementary work to keep them interested, while they may well struggle with social studies and physical education/sports and require extra help. The Asperger child might not understand that this is the ‘science' class and want to do something else like spelling or run around the room. Teachers must also know to give simple one task at a time instructions.

Another annoying aspect for both parents and teachers is that Asperger children have poorly developed organisational and time management skills. They will continually forget to take their pencils or books to the correct class, will spend an inordinate amount of time, for example, after going to get their pencils, sharpening them and sorting them out then run out of time to do the actual lesson. They will forget to bring their homework in for marking and as parents, you have to be on top of making them actually do their homework. They cannot understand that it is important (more so than other junior primary children) and will ‘waste time' and try your patience to the limit.

Because of their poor motor skills and co-ordination, handwriting is usually very poor and is often likened to ‘a fly walking over the page with ink on its legs'. Sporting activities are difficult also but a sympathetic teacher will give your Asperger child something else to do such as keeping score, taking the names of children who came first, second, third etc in a race to the record keepers. There are a multitude of things your child can do that won't embarrass him further in front of his peers which making him play in a team sport might do.

An Asperger child might well become obsessed with one thing - dinosaurs, the history of ‘whatever'. This can be turned into a positive for him if the teacher is sympathetic. He can be assigned the role of collecting and collating the information for a class project. He can have an amazing attention to detail and a prodigious memory for trivial facts.

As your Asperger child grows and develops a larger vocabulary, you will probably notice that his speech is more formal than that of his peers, he speaks as if he were an adult or someone from an earlier age in time. His voice inflection will usually be flat with no ‘highs or lows' of normal speech. It will frequently be repetitive and he will often give a long and convoluted answer instead of a concise one. If he is telling you something and is interrupted, he will start again from where he was, to the sentence, when others have finished talking, even 10 or 15 minutes later when people have forgotten what he was talking about.

Aspergers children are often very naive and trusting with little common sense. This means they are easily and, unfortunately, often taken advantage of by the unscrupulous. Road sense is late in developing and you may find yourself allowing a younger non-Asperger child to cross a road alone before your older Asperger one.

Routine is very important for Aspergers children and if you stop one developing before it reaches the point of obsession, this will help. By this you should often plan surprise outings, visits or change the way things are done in the home. For instance, why not change the seating plan at the table, the order of what's served (sweets before the main course) or anything that you can think of to disrupt the routine while being fun.

You could well have difficulty in introducing new foods to your Asperger child as it is: 1 a change in the routine 2 looks and smells different 3 tastes different and 4 has a different texture (eg smooth soup, lumpy stew) The easiest way around the food problem is to tell them they didn't like ice-cream before they tried it the first time. The same might go for anything with different textures such as gluing something in art or making a collage of leaves and bark for instance. Asperger children don't like experimenting with different tactile experiences. They also are overly sensitive to loud noises and can become distressed with crowds cheering at a school swimming carnival or a car backfiring in the street. Arguments between two or more people can be quite damaging as they don't understand the concept of an argument and the noise is frightening for them.

Aspergers children really have a different way of thinking about things than we do. It is not wrong or bad or flawed, just different. Their priorities are different too, as well as their awareness of different situations and understanding of them. They often prefer to solve a problem and not be concerned about what others may need socially or emotionally. As they are often overly concerned with detail, they can be aware of mistakes that others might miss.

Many Aspergers children have a clear sense of right and wrong and social justice. They usually grow into law abiding citizens can become excellent role models for others in that regard.

As with any disorder, there are varying levels of ‘disability'. Every person is unique and this is even more so with Aspergers children - even twins can have varying degrees of difficulty. As parents, it is imperative to treat all children with unconditional love and understanding, helping and guiding them to becoming responsible, caring adults.

A Letter To Grandparents

I came across this letter to grandparents by Nancy Mucklow when doing some Asperger research yesterday and it made me cry because it was so beautiful and so true. I wish something like this had been around when my son was little and I wish I would have had the courage to send it to my parents. They are no longer with us but they were the ones who missed out with their grandson, not him. He has love to spare from the rest of his family.

Especially for Grandparents of Children With Asperger Syndrome

By Nancy Mucklow

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

For some grandparents, the news seems to come right out of the blue. Sure, there were difficulties at school - but then, school isn't as strict as it used to be. And yes, there were some problems at home, but none of them sounded like anything that "good old-fashioned discipline" couldn't solve. Why, then, do the parents seem to be clinging to this diagnosis as if it were a life-raft in the high seas? And why are counsellors, psychologists, occupational therapists and special education teachers suddenly getting involved? Is this child really so different?

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

I've read articles about Asperger Syndrome. But I still don't understand what it is.

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

You've probably heard the parents complaining about the difficulties they've had with the child in the home - obsessive behavior, irrational outbursts, wild fears, and irritability over the smallest issues. These problems are not misbehaviors, but rather the child's responses to an inability to comprehend what is going on around them and inside them. Some experts have called it a "mind blindness," one that causes the person to stumble and bump into complex social situations that they can't "see." Yet by effectively "blinding" the mind to certain aspects of daily life, Asperger Syndrome enables the child's mind to focus in a way that most of us are incapable of.

They feel their feelings more intensely, experience texture, temperature and taste more powerfully, and think their thoughts more single-mindedly. In many ways, this ability to focus is the great gift of Asperger Syndrome, and is the reason why a great number people with Asperger Syndrome have become gifted scientists, artists and musicians. It is as if the Asperger brain is born speaking a different language. It can learn our language through careful instruction or self-instruction, but it will always retain its accent.While Asperger adults go on to successful careers and interesting lives, they will always be considered unusual people.

I've never heard of it before.

That's not too surprising. Pediatricians don't study it in medical school, teachers don't learn about it in education college, and the mass media rarely covers it. Until the 1980s, the condition didn't even have a name, even though Hans Asperger's original work was done in the 1940s. It is only very recently that the condition has received much attention at all. However, as professionals are becoming more informed about the condition, they are discovering that there is a fair amount of Asperger Syndrome out there. You may remember an "odd" child from your grade-school years - one that had no friends, who was always preoccupied with some obsessive interest that no one else cared about, who said the strangest things at the strangest times. Though the syndrome has only recently been named, these children have been living and growing up alongside other children for centuries.

Some have become successful and happy as adults despite their undiagnosed problems, teaching themselves over time how to navigate around their deficits. Others have gone on to live lives of confusion and frustration, never understanding why the world didn't make much sense to them. With the recognition of Asperger Syndrome, we now can give a new generation of Asperger children a chance at the same kind of life that other children have.

Great. So how do we fix it?

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

Specialized therapies for autism disorders are available, but in most cases, the parents must bear the full cost. This can cause tremendous financial strain on the family. In addition, while most regions require specialized programming for Asperger children, these programs are rarely sufficient for the child's needs. So the parents must fill in the gaps with their own home-made programming. Drug therapies are also sometimes available in cases where extreme behavior needs to be controlled. But these drugs don't treat the cause of Asperger Syndrome. So even if some of the symptoms can be relieved with drugs, the central problems still remain.

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

He is normal. And he has the capacity to grow up to become a wonderful, normal adult - especially now that he has been diagnosed and is receiving special training. But he is normal with a difference. The deficits that comprise Asperger Syndrome are not always readily apparent, especially in milder cases. The child is usually of average intelligence or higher, yet lacks what are essentially instincts for other children.

If your grandchild seems "perfectly normal" despite the diagnosis you've been told about, then he is probably working very hard to make sure he fits in - and it's not as easy as it looks. It is best to treat your grandchild for what he is - normal. But be prepared to take some advice from those closest to him regarding what is the best way to handle certain situations. It may not look like much to you, but Asperger Syndrome is a cause for concern. It's not at all the same thing as the sort of developmental delay that some children experience, and a professional trained in its diagnosis can determine the difference. Certainly misdiagnoses are possible. But in such cases, it's always wiser to err on the side of caution. The wait-and-see method is risky when there is evidence suggesting a neurological problem.

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

Unchildlike behavior doesn't mean that a child is "too smart" for play-dough and playgrounds. Even if she is smart, she still needs to learn the skills of play, because play is how children learn - about things, about life, and about each other. Precociousness is cute and is sometimes a source of pride for grandparents, but it is also often an indication that there is an underlying problem that needs to be addressed - and the earlier the better.

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

You might, or you might not. Usually at least one of the parents has some Asperger qualities to their personality, and so it seems likely that the same might be true of the grandparent generation. But before you get defensive, remember that Asperger Syndrome shouldn't be regarded as a source of family shame. It's a difference more than a disorder. And we know it takes all kinds of people to make the world go around. Many famous people are believed to have had Asperger Syndrome, including Albert Einstein, Thomas Jefferson, Anton Bruckner, and Andy Warhol. It seems a touch of autism often brings out genius. And that's not such a bad thing to have in the family!

What if I don't believe the diagnosis?

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

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

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

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

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

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

Your son and daughter-in-law are now so used to defending their child that it comes as second nature. Give them some time. Once they are more certain of your support, they will be less sensitive. In the meantime, think carefully before you speak. Choose expressions that suggest sympathy and genuine curiosity, and avoid those that convey criticism. For example, instead of saying ‘He looks perfectly normal to me', you can say ‘He's doing really well.' Phrase ideas as questions, not judgments by saying ‘Have you thought about...' rather than ‘It's probably...'. The most destructive things you can say are those that convey your lack of trust in their ability to parent, your disdain for the diagnosis, and your unwillingness to make accommodations.

Here are some real-life examples gathered from the mothers of Asperger children:

* 'Just let him spend more time with us. We'll whip him into shape!'

* ‘She may act that way at home, but she's not going to do that in MY house!' * ‘He wouldn't act this way if you didn't work.' * ‘I managed all by myself with four kids. You've just got two, and you can't handle them!' * 'Don't believe everything those psychologists tell you. He'll grow out of it, wait and see!'

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

* 'He's having all these problems because you took him out of school for that home-schooloing nonsense.'

* ‘Everybody's got to have a problem with a fancy name these days!' * 'All you ever do is complain about how hard your life is.'

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

So then what can I do for them?

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

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

What does my grandchild need from me?

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

Learn to listen to the child when he says he doesn't want to do something. Maybe some children are happy to spend a couple of hours at a flea market, but think very carefully before dragging an Asperger child there.

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

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

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

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

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

One word of caution: watch the emotional levels. Asperger children often have great difficulty sorting out emotions. If you get angry, the child could lose control because she is unable to deal with your anger and her own confusion at the same time. Reign in your temper when the child is clumsy, stubborn, or frustrated. In situations where you feel you really need to be firm, keep your tone calm, your movements slow and even, and tell the child what you're going to do before you do it.

Get advice from the parents how to deal with little meltdowns so that you are prepared in advance, but do your best to avoid triggering them.

Here are some simple DO's and DON'T's to remember when spending time with your grandchild:

• Do praise the child for his strengths.

• Do get involved in the child's interests.

• Do learn what sorts of activities are recommended for the child.

• Do acknowledge the child's expressions of frustration.

• Do respect the child's fears, even if they seem senseless.

• Do control your anger.

• Don't tell the child she will outgrow her difficulties.

• Don't joke, tease, shame, threaten, or demean the child.

• Don't talk to him as if he were stupid.

• Don't compare him with his siblings.

• Don't feel helpless - ask for help.

©Nancy Mucklow The author, Nancy Mucklow, is a journalist and parent of a child who is diagnosed with Asperger Syndrome. She wrote this article in the hopes that it would be shared with grandparents of children diagnosed with AS.

There is only one thing I would add to this letter - DON'T talk about him as if he isn't there.

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Comments 37 comments

roger one profile image

roger one 8 years ago

A well written and informative hub about Asperger Syndrome, thanks Jane.


Jim Springborn 7 years ago

Hello, My name is Jim. I'am a stay at home father of a teenage (13) aspergers young man. I feel he is in grave danger! I need help, I need advice. My # is 610-670-1556. I appreciate all your time...Jim


Jane 7 years ago

Jim.

I strongly suggest you contact your doctor or nearest hospital. I'm not qualified to give medical advice. If your son is in danger from other people, contact the police.

Jane


shamiraash 7 years ago

I am Asperger's autistic, and though I have had my ups and downs in life, I am definitely not lonely. I also have a lot of friends on the autism spectrum who are not lonely.

In the article above, this sentence stuck out to me:

"Aspergers children are often very naïve and trusting with little common sense."

This statement is a bit subjective. All children are naïve and trusting and lacking in common sense. As a child, I may have been especially naïve at times, but I also learned very quickly. When you are a child on the autism spectrum, it is like you are building an internal computer program within a set model framework (to be used as a reference while navigating through life). Young Aspies may have more or less flexibility, but flexibility--and also common sense--is very individual. The environment a child on the spectrum grows up in heavily contributes to how this internal computer system will manifest.

Another statement that stuck out to me above:

"Another annoying aspect for both parents and teachers is that Asperger children have poorly developed organisational and time management skills."

It's hard for me to digest when people say that people on the autism spectrum have "annoying" traits. I am the parent of an autistic child and yes, he has some annoying traits. But so does every other kid I have ever met in my life and this goes for both typical and autistic children.

Oh, and not all Aspies have poor motor skills. This will hopefully be corrected upon and expanded in the DSM V criteria (used to diagnose Asperger's syndrome), which is due out in a few years.

I was, however, glad to see that you mentioned that Autism Spectrum Disorders do not have a cure. And yes, there are definitely beneficial therapies and such to help with support and integration, which you stated.


Jane Adamson profile image

Jane Adamson 7 years ago Author

Shamiraash

Thank you for your comments. Just as every child is different, so is every aspie child different. The statement that aspies are 'often very naïve and trusting with little common sense' is a valid comment. Their poor social skills and lack of understanding of anything abstract will often lead them to believe anything that people say. The 'stranger danger' concept can be very hard to get through to aspies as 90% believe what people say as being fact.

I have researched Aspergers Syndrome thoroughly as not only does my son have it, so does my husband so I live with it daily, like you. Traits such as poorly developed organisational skills and self stim can be annoying. It doesn't mean I love my husband or child any less. I agree that every child has annoying traits but in aspies, it is magnified many times.

I was not aware that DSMV was to be change regarding poor motor skills. Thank you for pointing this out. My husband, son and all other aspergers children I have come into contact with have had poor motor skills, both fine (writing etc) and gross (catching balls etc).

Everyone is an individual. You yourself are 'not typical' in that you are one of the (relatively) few female Aspergers.

It is wonderful to have some debate here. Please comment further if you wish.

Jane


jt 7 years ago

I have a son who is in a class with a child who has aspergers and this child is constantly antagonisizing my son. I have tried to understand from this childs perspective but when he constantly interupts the lessons by singing,swearing, thumping my son and other children, constantly verbally abusing the children and manipulating them and not getting reprimanded or taken out of the situation, I am concernerned that the focus is on this one child and not the rest of the class. How should this be dealt with?


Jane Adamson profile image

Jane Adamson 7 years ago Author

Hi jt

I feel for you and your son's problem. It sounds as though this other child might also have Tourettes - the singing, swearing etc. I would suggest talking to your son's teachers as well as the headmaster of the school. This behavior is not only disrupting the class, it is detrimental to learning as well.

Good luck and let me know what happens.

Jane


jt 7 years ago

I have spoken to the headmistress and the special needs department at the school and am constantly being told that the child is unaware of what he is doing and when he is spoken to that he is sorry. Once they have approached him about one kind of behaviour, he changes to another. I feel that he does have some kind of understanding in order to change from the initial problem, but because the school seems to be only looking at this child they seem to be missing out in the bigger picture. I am going in to the school next week and am not sure how to address the situation and what I should expect from what is deemed as acceptable behaviour.


Jane Adamson profile image

Jane Adamson 7 years ago Author

jt - I feel that there is no easy answer for this. If there is a special needs department at the school then surely this child should be in this type of class. It is too difficult for all conerned, children and teacher, to have this child in a mainstream class. The problems for the other children could be far reaching - not only are they missing out on the education they deserve, they are also 'seeing' bad behavior being rewarded with extra attention from the teacher. I'm a qualified teacher and have taught special needs children but mostly in a class specifically for them. I learned early in my teaching career to ignore the 'class clown' or the one who disrupted the class. If they're not getting 'noticed' for their bad behavior they soon stop it. It's not fun anymore. However this is different for a child like the one you mention. This child needs an aide who can keep him in check. I'm not sure of where you are but I could have had a special aid for my son, paid for by the education department.

Please keep me informed on how everything goes.

Jane


Jane Adamson profile image

Jane Adamson 7 years ago Author

jt - I feel that there is no easy answer for this. If there is a special needs department at the school then surely this child should be in this type of class. It is too difficult for all conerned, children and teacher, to have this child in a mainstream class. The problems for the other children could be far reaching - not only are they missing out on the education they deserve, they are also 'seeing' bad behavior being rewarded with extra attention from the teacher. I'm a qualified teacher and have taught special needs children but mostly in a class specifically for them. I learned early in my teaching career to ignore the 'class clown' or the one who disrupted the class. If they're not getting 'noticed' for their bad behavior they soon stop it. It's not fun anymore. However this is different for a child like the one you mention. This child needs an aide who can keep him in check. I'm not sure of where you are but I could have had a special aid for my son, paid for by the education department.

Please keep me informed on how everything goes.

Jane


jt 7 years ago

Hi Jane

Well not much has been resolved.My son has ben told that if anything occurs again he must report it to a TA. The TA will then report it to the special needs coordinator who will then take appropriate action. Apparently this child is now being teased by other pupils, not my son, and I feel the situation will only get worse. The special needs coordinotor explained that this child is assessed regurarly during lessons by outside assessors and the strategy for his management reviewed constantly. I do not question her management of this child but I question the effect it is having on my sons education. According to the special needs coordinator the child concerned does not understand his behaviour and it cannot be addressed if it is not repoerted. I would have thought that part of the TAs job was to observe the dynamics within the class which is being created by this child.


Jane Adamson profile image

Jane Adamson 7 years ago Author

jt - I truly feel for you, your son, the other pupils and for that poor child. Granted he is disturbing the class on a regular basis but if he is being teased it will only exasperbate the situation. I can understand the need for reporting the behaviors so they can be worked on but I stand by my ealier statement that he should be in a specialist class until he has learned to control his behavior better. Is the TA doing his/her job properly?

My son was teased from the time he started school until he was aged around 15 or so. He was brave enough to study ballet, jazz and tap while living in a small town. He performed in all the concerts, at the local show and at events in the main street. He was showing the bullies that he no longer cared. He was teased of course but put up with it.. He also taught himself to play trombone in the school's big band and started gaining respect from his peers.

I look forward to hearing from you again.

Jane


J Burgraff profile image

J Burgraff 6 years ago

Jane, thank you for your inciteful article about Asberger's Syndrome. Thank goodness your son has a mother who has gone out of her way to understand the syndrome and how to help him navigate its waters. Uum, J.t., Ms. Adamson is not a scapegoat for unmanageable behavior in your son's class. Sounds like there's a whole lot more disruption than just one poor little guy could create. You say that the T.A. should be observing the dynamic that this "child creates." A dynamic is not created by one child. I'm sorry, but it sounds like you are playing the blame game. Rethink, retool. It sounds like an easy answer to a more complex problem. Makes me wonder if you are looking at what you can do for your child instead of who else you can hold accountable. Great article Ms. Adamson. I have a couple of friends who have children with Asbergers and like you they have gone the route of exploring every educational possiblity out there so that they can help their child. Kudos to all of you.


Hikikomori 6 years ago

Thanks for creating this hub.

I have Asperger's.


shazwellyn profile image

shazwellyn 6 years ago from Great Britain

An informative hub. I dont know if it will help, but I have published a couple of hubs on this - as you said, it is important to gather as much information as possible and I hope that I can add a little more?

Do You Think Your Child Has Asperger’s Syndrome? Autistic Spectrum Disorder – Which Way Now? -

http://hubpages.com/health/Do-You-Think-Your-Child...

The Story of Daniel - My Asperger's Autistic Son -

http://hubpages.com/health/The-Story-of-Daniel-My-...

I dont know if this will help but it helped my son!

A Rough Guide to Autism and the Gluten Free and Casein Free Diet -

http://hubpages.com/food/A-Rough-Guide-to-Autism-a...

I hope sharing this information helps! We need to support each other!

Wishing all good things,

Shaz x


shawna 6 years ago

I'm curious how you know all you do about aspergers? do any of your children have it? sorry just learning that advice from someone who does not have personal experience with this disorder does me no good cause they dont know where i'm coming from with my experinces with my son


Teresa 6 years ago

Very well written article. My grandson who has Asperger Syndrome lives with me and this explained him to a T! Of course I read everything I can get my hands on about Asperger syndrome. How can I help my child if I don't know what is going on.


Lynda Gary profile image

Lynda Gary 6 years ago

Glad I found (and read) this. My aspie son is now 19 and is additionally challenged by a brain injury and a neuromuscular disorder. Though your article is written from the perspective of younger children, it all STILL applies to my young adult child, with manifestations that are now more "grown up."

I have to agree with the first comment (I think it was) about aspie kids being "lonely." My son may feel like he's an outsider, but he easily attaches to other "outsiders". Being alone, in fact, is one of his problems: He can't be. His friendships usually don't last for "normal" periods of times, but he makes friends so easily that he replaces the old with new as soon as needed. Part of that has to do with his being naïve, as you mentioned.

I don't agree with everything you wrote (for ex: aspies are not always high functioning; some are mid, like my son), but for the most part it is a very comprehensive view of aspergers. I particularly like the section addressed to grandparents, and as soon as I'm done commenting, I'm forwarding the link to my mother.

I've spent 19 years caring for my son on my own, for the most part. Even his father never seemed to "get it" or "accept it," and this lead to a strain which eventually added to the reasons for our divorce. My son is acutely aware of his father's refusal to accept him as he is, and it is painful for him, as it would be for any child. The extended families' indifference, too, is a cause of significant pain for both of us. We'll be moving out of state soon, away from any family members, and sadly, my son won't miss anyone. They've had 19 years to bond with this unique and special kid, and it is they who have no idea what a great person they've neglected to get to know.

Thanks again for posting this. I have a few autistic-related articles, too, that anyone who is here searching for more info may want to read. (Click on my pic. You'll find all of my articles.)


Jane Adamson profile image

Jane Adamson 6 years ago Author

Lynda,

Thank you for your kind comments. I totally agree that the Asperger spectrum is wide, I am lucky that John is on the mid to upper end of the scale. I have a friend who's 9 year old aspie son won't leave the house to catch the school bus until 8.17am. And he watches the clock for at least 5 minutes so he can leave exactly on time. I'm so happy that your son can find friends easily, even if they are temporary.

I feel for you with your son's added problems and doing this on your own. Are you aware that a growning number of scientific and medical studies state that Aspergers is inherited from the male line? My husband also is also an aspie and while he can be 'social', he doesn't have a best mate he can unwind with. He doesn't really talk to me about his problems and we've been married for 28 years.

John is also an adult now although I haven't updated his story here. He is much better in social situations through practice and ongoing training. He has been studying classical piano at university level but his aspergers is holding him back from going much further. He plays beautifully but has trouble with his written exams.

I will certainly be checking out your articles. Thank you for letting me know about them.

Jane


Nate 6 years ago

Great resource, my only concern is that at this point in time all individuals with an exceptionality are generally referred to as _________ with ________. For instance, 'a boy with Asberger's' or 'a student who has autism'. Maybe this subtlety isn't true where you are, I just thought I'd share what I've been learning. The idea is that these individuals are a girl, boy, student, patient first. They are not defined by their exceptionality.

Thanks again!


Nate 6 years ago

Sorry, a comment like that and I spell Asperger's wrong.


CMCastro profile image

CMCastro 6 years ago from Baltimore,MD USA

I am glad you wrote again about Aspergers Syndrome. Back when I was a child there were no special programs for children like this. I am well informed now and this can also help me in my work life as well as personal( I work with special needs children). It would be great if you can write about the Adult who has Asperger's Syndrome. Thanks again.:)


Jane Adamson profile image

Jane Adamson 6 years ago Author

Writing about the adult Aspie is definitely on my to do list. Thanks for the prod.

Jane


Cathy 6 years ago

How do you suggest telling my son that he has high functioning aspergers without damaging his self esteem further. He deserves to know why he is different but at the same time I need the right words. Thank you for your guidance!


Jane Adamson profile image

Jane Adamson 6 years ago Author

Cathy, this is a hard one. The actual words you need are less important than the way you say them. With John, we made the decision that until we had the diagnosis, we didn't know how to help him and we told him this. He knew that no matter what, we loved him unconditionally. Those were some of the words we spoke.

As for your son's self esteem, your love and acceptance of him as he is will do a lot to keep that from plummeting. If he is aware that he is different, and depending on his age, you can tell him that he is part of a very special group of people, people who have wonderful and different qualities.

Email me at jane.adamson17@gmail.com with your email address if I can help further.

Remember, you will need some support too. Please keep in touch either by email or here.

Jane


Kylyssa Shay 6 years ago

I have to defend the "naïve and trusting" assertion. I am a high-functioning autistic person and I fall for it almost every time someone tries to deceive me. I even KNOW I'm naïve but it doesn't help. I have learned about certain situations but if things deviate too far from the scenario I've been taught (or taught myself) I will likely not "get" it and fall for a new twist on an old deception.

I might learn the hard way that if someone asks me to help him because his child is in the alley choking it's a trap but then I might get caught by the next guy telling me he needs help getting a trapped cat out of a garbage dumpster even though the situations have a degree of similarity. My naivete was responsible for making my period of homelessness truly terrifying and barely survivable.


Jane Adamson profile image

Jane Adamson 6 years ago Author

Hi Kylyssa,

It is a fact of life that many people, not only aspies, learn things the hard way. It is human nature, for most of us, to want to trust people and to help people in need. And it is harder for many aspies to pick the right situation. Unfortunately too often our trust is abused.

I do hope that you have found people you can trust, and that you never have to go through being homeless and at risk like that again.

Jane


ambertoner 5 years ago

I met my husband when we were a young kid 15 years ago i knew he was different i thought that he was just shy i didn't know that he had Aspergers he didn't know he had it either.He mother thought he had ocd she put him up for adoption cause she could not handle him.He had no family that care for him and had time for him they thought he was crazy and didn't know what really was wrong.I lost contact with my husband 15 years then he came to find me on his own cause he remember me as a person that really cared about him and take the time to listen to him.After 15 years not seeing eachother we been together 2 years and now married i have 3 kids and he adore them as his own children.My advise to you is that have patient with your child with Aspergers.they are specil people that deseve the love and care and support like i give my husband Joseph he 34 and now relize he has Aspergers.:-)


Jane Adamson profile image

Jane Adamson 5 years ago Author

I agree. Aspergers truly are special people. Love him and always have a laugh. Laughter keeps us young.


Mrs. Menagerie profile image

Mrs. Menagerie 5 years ago from The Zoo

Wow! Brilliantly written. Very concise and informative. Thank you.


Kristin Halsted profile image

Kristin Halsted 5 years ago

I really enjoyed your hub! I knew a little about Asperger's, but learned a lot more here! I find it interesting that Asperger's has some "symptoms" that are the same as dyslexia, which my daughter has. Although dyslexia is not a behavioral disorder, some of the challenges are the same. I look forward to reading more from you!


Kyle 4 years ago

This reminds me of myself. I'm an Aspergers kid myself, having been diagnosed when I was 5 I think. I'm actually doing a college paper on it.

I think this is a great read for those who do not understand fully the condition. Also not necessarily, does Aspergers have much in common with Dyslexia. Dyslexia involves slow learning. If anything, the parts of the brain that are affected by Aspergers Syndrome make absorption of knowledge quite easier and quicker. It's usually the frontal cortex that has lesser development, resulting in slower social skills. I should know, I'm extremely socially awkward.

But still, nice find.

Speaking at least for myself anyway, since I can't speak entirely for the Aspergers kid community, I am actually proud I'm an Aspergers kid. I don't want a cure, because Aspergers is not a disease. It's a disorder, but in my opinion, there's something to cherish as a value, being an Aspergers kid. Even if a cure were available, I would never use it.

Again, I can't speak for the whole Aspergers kid community. But that's my opinion anyway.


Jane Adamson profile image

Jane Adamson 4 years ago Author

Thank you Kyle. Good luck with your college paper.


nina 3 years ago

Hello Jane,

Please, How do you suggest telling my x-husband about my 30 years old high functional Aspie son SEVER situation.

My son got a lots of speeding tickets and several smaller accidents since he started driving at age 17. Until 5 years ago that with him changing the lane a car hit him from the back, lost control ,hit a pole and an innocent young kid without a seat belt in that car lost her life. The other car driver got a speeding ticket that day.Police spent 9 months of investigation and DA charged my son "reckless driver" , since my son had gotten another speeding ticket three weeks after that accident.

Per his lawyer advice, case did not go for trial.Judge did not accept DA's sever charges. As a partial guilty plea bargain with my son's clean no criminal background, judge ruled three years probation for my son (6 months jail+2.5 years probation.His driver license is suspended for this period(thank god).

I have been caring for my son on my own. His father never seemed to "get it" or "accept it," before or after this unfortunate accident.He is the type of father that had gotten a DUI two weeks before my son's accident and had told our son that the system is stupid, and that his lack of balance in the walking test was because of an inner ear infection he had 27 years ago!!!!

He has asked my son to go live with him in another state that he is living.

My son loves him and so bitter about what the system has done to him, is very much looking forward to that.His probation is up in three more months.

In all honesty , I think it is good for him to go live in another state. My biggest fear is him driving again. How believes what ever dad says.

Every body tells me my problem is not my son but it is the father.

Please help me find the right words to write my ex-husband concerning my son.

I will be so grateful.


Jane 3 years ago

Nina I feel for you and what you have gone through. It's not fun to always be worried when your son is driving. Does he take any medication such as Ritalin? This can certainly help with concentration while driving. Depending on the severity of his Aspergers it could be important that he is on some type of medication.

With regards to your husband and what to tell him, you must tell him the truth. What happened, when it happened and the consequences. The sentence your son was given. As your husband lives in a different state you can call him or write to him. It could be good for your son to live with him for a while so he gets a different style of parenting.

However your husband needs to know what responsibilities he is taking on. That he will need to help your son find a job and possibly drive him to and from work each day. He will need to be a good role model and teach your son self discipline. He will also have to feed and care for him and help him find friends and a support network. I agree that your husband has the problem and has been shirking his duties as a father for too long. Your husband has to love and accept his son for who he is. He must be prepared to help his son become a good citizen.

I worry each time my son drives but I have to let him live his own life.

Tell your husband that it is time he took on his responsibilities as a father. You have been doing on your own for too long and need a break. Your son needs a father and a male role model. Aspergers is often inherited through the male line and your husband may also have Aspergers or this may be a worry of his. Without proper parenting from him your son could end up having more accidents. Is there any chance your son could do an advanced driving course to give him better understanding of driving and how to avoid accidents?

I wish you and your son the best of luck.


nina 3 years ago

Hello Jane,

Thank you very much for the quick response.

I hope you don't mind, below I wrote some more about my life hoping you could help me some more with the letter that I need to write to my x-husband before my son moves there.

We had divorced only eight months prior to the accident. When my husband moved out, I got a place for me and my son. My husband advised my son that he should move out and get his own place. I did not interfere, only told my son that I will always be around if he needs me.

It was two weeks before my son’s accident that my husband got the DUI and three weeks later got laid-off from his job and four months later found a job in the other state and moved out of state.

My husband paid for the lawyer; he could not visit my son or come to the courts because of his own DUI plea situation.

My son’s roommate moved out without notice, my son told me that he was going to be evicted and I offered him to come and live with me. All together my son lived on his own for nine months.

My son works for a small place getting minimum wage, the owner loves him , he believed the sentence was too sever, him and his wife have been very supportive, the next day my son was out ,he was back at work with the owner arranging car-pool with another employee. I believe he is an angel sent.

My husband is aware of all this.

I don’t know how I can get this through him. What are the right words to remind him that this is not about him always trying to be the “nice guy”? That god forbids consequences of his DENIALS will fall on my son.

Please, help me with the statement that you think will get through him.

Thank you


DAVIDOWENS 17 months ago

asberges syn drome yes liverpool asberges syndrome peiople are very isloated nothing to do dureing the day time as well in liverpool trhe livewrpool asberges team are not very happ[y at all and no low sel;f estem as well and its caused me ulcres steess and depresstiuon fopr about 36 yrs with nomrean ful actitives to do \dureing thje day time asi hAd acommnity care assement done in october last year and after commnity care assement i did not qualife for servbces at allnow un der the white papewr evauling pap[ewr evaulng people now 21st century which is all wrong as well thats commnity care for you thess days nothing at all no respite faclites as un der the cmmnty care act they only con centrrate on aduklts who have morew sevre problems thanmy self and its not good at allit use to be for people with a modrate DISABLTYS FROM DAVE OWENS

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