Kyle’s Story: Parents Share Their Experience in Raising a Youngster with Asperger’s

From birth to 12 years—

Raising our wonderful son Kyle wasn't an easy task, especially for a first time mother. We lived on a farm a fair distance from town and I didn't know many people at first.

Kyle had a difficult birth; he was eight days late (in summer) and then decided to arrive in a rush. From first contraction to birth was approximately three hours and I was having two minute contractions on the 25km trip to hospital. He voided just before birth and needed his mouth and airways cleared so it was fairly scary waiting for that first cry.

As Kyle had low blood sugar he was transferred to a major hospital for more intensive care. His poor tiny feet were pricked every two hours to test his blood sugar and after a while, when they squeezed to get the drop of blood, all the other pricks would ooze too. Horrible for Kyle and terrible thing for me to watch.

He walked at 12 months and started talking at about the right time; however we didn't realize that we were the only ones who could understand him. At playgroup he always stayed by himself or with his only friend Shawn, never joining in with group activities. The clinic sister was the one who picked up on Kyle's speech difficulties when I started taking his baby sister for her weekly check-ups.

We did 12 months of speech therapy which helped enormously though he had no idea of how to sequence picture card stories. He has always been very intelligent with a vocabulary way above his chronological age so this inability to sequence stories was a mystery.

I wasn't too worried that he didn't join in at playgroup. Living on a farm meant we didn't have too many visitors with young kids for him to learn to interact with.

Pre-primay was good for him. I even enrolled him in 4 year old pre-primary as intellectually he was ready and he needed that interaction with his peers. He loved pre-primary and seemed to blossom.

However, when he started year one, the same kids he had gone to playgroup and pre-primary with turned on him and started teasing and bullying him. We were at a loss to explain this and unfortunately the school had no bullying policy at that time. Our requests for action fell on deaf ears and I spent nearly every afternoon after school calming Kyle down, telling him that perhaps Jacob had a fight with his sister and took it out on Kyle, or maybe Bobby was upset because his moms and dads were fighting and Julie didn't like any boys, not just him.

We couldn't take him out of school as there was only one school in town and home schooling was barely in its infancy then. He managed to survive primary school (not without physical and huge mental scars) but with a lot of love and encouragement from us and his one friend, he did graduate.

We shifted to a different country town in time for Kyle to start year 7. We mainly wanted access to a 5 year high school so he wouldn't have to go to boarding school, and we also wanted to be closer to a greater range of medical facilities. By this time we realized he had some sort of major problem, but the psychiatrists and psychologists we had seen in our nearest major centre were mystified. This move to a new town was a huge deal for us. My husband and kids had been born there and the family had been farming on our property for nearly 60 years. We still have extended family farming there.

However, when it came to what was going to be best for Kyle, it was no contest and we've never looked back. Sure, there were problems, especially with our 8 year old daughter Maggie who was leaving all her friends, but we got through that.

Kyle still had problems in his new school; he had lost his only friend and had trouble making new ones, as did our daughter. The only friends they did make were the ones whose moms and dads had bought up with old fashioned values - being kind, being helpful to someone less fortunate, respect for someone different, being genuine in what they said or did. Unfortunately there were very few kids like that in the new school and a lot of what I consider the 'skin deep only' ones who change friends on a daily or weekly basis and don't care who they hurt.

Through a friend in our new town, we were finally able to get an accurate diagnosis of Kyle's problem – Asperger’s Syndrome. It fit him to a tee. The diagnosis could have been written about Kyle - everything was there. I cried buckets when the diagnosis came, tears of sadness that my beautiful boy was 'handicapped', that there was not a cure for Asperger’s Syndrome, but there were also tears of relief as now we had something to work with, some way of learning how to help him. I remember my mother asking me if I wanted Kyle to 'be labeled' for the rest of his life. My answer was that if I didn't know what the problem was, I couldn't help him in any way.

It has taken a lot of love, patience, understanding, research and sheer hard work to get Kyle to where he is now but I wouldn't trade any of it for a so-called 'normal' youngster. I do wish I could have shielded him more at primary school, but back then the options were limited and I now know that those hard years have given him resilience, much more than his 'skin deep' peers might have developed.

Asperger’s Syndrome, the teen years—

High school was not going to be easy for Kyle. This is a time when students are asked to become more responsible for themselves, to move from classroom to classroom, subject to subject. And they are expected to be prepared for that subject with the correct books and any other necessary equipment. Planning ahead is not something that Asperger’s Syndrome kids do well and Kyle was unable to do this. He could not remember or work out which books he needed to take or which room to go to. Which made him frequently unprepared and late for class, something which disrupted the others and didn't endear him to his teachers or peers.

Time management is another skill that takes a long time to acquire (I'm not sure Asperger’s Syndrome people ever do). Therefore, Kyle would always do the fun things before the work related or harder stuff. If I had a dollar for every time I've said "Do the things you have to do before the things you want to do" I'd have plenty put away for a rainy day. I'm sure most teenagers are like that but with Kyle, it is something that needed reinforcing on a daily basis.

Kyle was bullied and teased very badly at school and after his formal diagnosis; we were advised by his psychologist to remove him immediately and to teach him at home. This entailed getting permission from the relevant government departments to take him out of mainstream school and into Distance Education.

Kyle's work was sent to him each week and I was responsible for making sure he did it, helping him where necessary. Kyle had a direct line to ring his teachers if he was stuck on anything and they would ring him at least weekly to check on his progress. Completed work had to be posted back to them for marking.

Even though I am a trained teacher, teaching Kyle at home put considerable strain on our relationship. He had trouble distinguishing between the ‘mother' relationship and the ‘teacher' relationship and that they were different. It was necessary for me to be very strict with Kyle during ‘school hours' to make sure his work was done. This was not the way we'd brought our kids up; we'd always used love and encouragement and friendship rather than strict rules. Kyle didn't like the ‘strict mother' and rebelled which made it doubly hard for me. On the one hand I was trying to let him have some independence and acknowledge the fact that he was a teenager in high school, but it was still necessary to keep a very close eye on him to make sure he was working. Once ‘school time' was over I would need to give Kyle a lot of extra ‘mom' time to make up for the strictness.

Kyle's sister Maggie wasn't happy with the arrangement either. From her point of view Kyle was getting all the attention while she got very little. He had me to himself all day while she had to sit on a hot bus to and from school and she still had to share me with him when she got home and to her nine year old mind it wasn't fair. I don't blame her for thinking that, it wasn't an ideal situation.

By second year high school, we had managed to find a wonderful Christian school for Kyle with caring teachers and staff. It was down in the city but we were able to find home accommodation with a compassionate family and he came home each weekend. He blossomed at this school. The kids were of a completely different mindset to what he had had at his previous school. They accepted him with his Asperger’s Syndrome and made him part of their larger ‘family'.

Unfortunately for Kyle though, the mother where he was staying became ill and couldn't keep Kyle there any longer. We were able to get him accommodation with another family but that was only short term as the travelling conditions were too confusing for him - he needed to catch a bus, a train and then another bus to get to school. We ended up bringing him home and re-enrolling him in his previous school till we could work something else out.

It was a surprise to find that the kids who had teased and bullied him eighteen months previously had matured and grown out of that sort of behavior. He was able to finish junior high living at home.

We re-enrolled him at the Christian school for senior high and he was able to get transport to and from school each day. It made for a long day for him having to leave at 6.30am and get home at 7pm but the advantages of him being at that school far outweighed the disadvantages.

Senior high was a wonderful time for Kyle as the school had a ‘big band' and this rekindled Kyle's love of music. He taught himself to play trumpet and played in all band productions, even going on tour with them to rural areas. He also started playing the piano again, something he had done extremely well as a young youngster. We hadn't been able to find a music teacher in our new town but with Kyle's love of music now giving him so much enjoyment; we were able to find one in the next town. Music became Kyle's life.

Aspects of Asperger’s Syndrome—

We've had some interesting times with Kyle. When he was aged about 8 or 9 he would twist his fingers. I'm not sure how he managed to get them into the shapes he did without injuring himself, but he'd just keep twisting these fantastic shapes. This was cured over many months by just saying quietly 'Kyle, fingers'. Eventually he slowed down the twisting then stopped it completely but soon replaced it with grinding his teeth. Again, it was 'Kyle, teeth'. It got awfully hard at times to keep the voice quiet and calm when we'd hear this grating sound every couple of minutes.

As one 'twitch' was eliminated, another would take its place. There was fork twisting and juggling (how did he get through that without losing an eye), collecting old bones from around the farm and keeping them in his room and my least favorite of all, flapping. Thank goodness that one was stopped in its tracks immediately when I showed him how he looked in the mirror. He had enough troubles as school without adding flapping his arms to the mix.

We've also had frustrating times such as when we'd taken the kids somewhere special and Kyle couldn't understand when it was time to leave. He was having fun and didn't understand that the aquarium (or shop or museum or whatever) was about to close. I'd nearly be in tears listening to him go on and on about wanting to stay. Patience might be a virtue but at times it's pretty hard to be virtuous. One day, out of the blue, it just 'clicked' for him and there were no more problems, just a 'thank you for taking me there, it was fun'. I don't know what trigger went off in his brain but I wished I knew where the switch was.

If it had not been for the Online Parent Support program and all the support from Mark Hutten, we would not be where we are today. “My Aspergers child” has come a long way – and so have we.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

Home-Schooling Aspergers Children

If you choose to home school your youngster with Aspergers, you might run across some extra issues in finding the right curriculum. This article will help you get started.

More and more moms and dads are making the choice to home school their kids with Aspergers. There are countless resources available for choosing the curriculum that best meets their needs.

If you will be purchasing curriculum, as opposed to creating your own, it is best to consider several packages before making a final decision. There are many wonderful companies which offer special needs curriculum. If you make a purchase before researching thoroughly, you may overlook a program that would have been more suited to your youngster’s needs.

Visit your local library or bookstore. Many informative books have been written on this subject. Read the recommendations of other moms and dads. Find out what worked well for them and what didn’t.

Join a home school group, either locally or online. Moms and dads are always willing to share their thoughts on curriculum they have used and how their kids benefited from it.

Although joining an online home school group may not be as ‘hands on’ as joining one in your area, it may be more advantageous, in this particular situation. Chances are, if you do a search, you will be able to locate a home school group that caters to kids with Aspergers.

Some local Autism organizations may lend out or help families purchase educational materials, if cost is a factor.

Visit websites geared toward teachers and lesson planning. They are easily located by performing a simple search, using your favorite search engine. Many have forums that you can join, where you can get answers to all of your curriculum-related questions.

There are many websites that provide printable worksheets and teaching aids, for kids. You will find that a large number of these sites have been created by Moms (and sometimes Dads) who have special needs kids, themselves. These moms and dads are usually more than happy to suggest curriculum options that have worked well, in their situation.

By doing a bit of preliminary research, you will have no problem finding teaching material for your youngster with Aspergers.


==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

Aspergers Children in the Classroom

Like any youngster, kids with Aspergers (high-functioning autism) bring a unique set of problems and benefits to the classroom. Several key characteristics of the Aspergers youngster are presented here as they relate to the classroom setting.

Because of their ability to focus in on one area of interest, Aspergers kids can make good students. Their ability to focus, however, can also be their weakness. The Aspergers youngster may, for instance, be expert at history, but will study that subject to the detriment of all other subjects. It is up to the educator to help the Aspergers youngster to broaden his interests. It helps if the educator can find a tie-in from the subject of the youngster’s interest to the subject at hand. For example, if the child is a history buff and you need to get him on board with math, it might help to give him some historical information related to math. Introduce him to some of the greatest mathematical minds of all time like Pythagoras, or Sir Isaac Newton and go from there to some of the mathematical concepts that they used or invented.

If you have a classroom situation where your students are conspiring against you, or are trying to cover for the misbehavior of a particular child, and you have a youngster with Aspergers in your room, consider yourself blessed! Because of their strong sense of fair play, you can very often count on the Aspergers child to tell you exactly what is going on. If Suzie has hidden all the erasers, and you ask the class, “Who took my erasers?” Your Aspergers child will tell you that Suzie took them, where she hid them, and who served as her co-conspirators. (The Aspergers youngster’s limited understanding of social interactions makes him unable to fully appreciate the social consequences of exposing a plot.)

If it becomes necessary for you to discipline an Aspergers youngster, be prepared to explain in logical fashion why a particular disciplinary action is being meted out. The Aspergers youngster’s strong sense of fair play and his limited ability to see beyond himself may work together to keep him from understanding the reasons behind the consequences of his behavior. He may even become very angry at the whole situation. If this happens, allow the youngster some alone time. The Aspergers youngster needs this in order to “decompress.” Then, after he has had some time to cool down, explain to him step-by-step what his behavior was, why discipline needs to be meted out, what the terms of the discipline are, and what he can do in the future to avoid similar consequences.

Substitute educators will learn to appreciate the Aspergers youngster in their classroom. While everyone else is working hard to throw the substitute off, the Aspergers child will be working hard to remind the class of the usual routine. On the downside, the Aspergers youngster’s strong desire for routine can make change very difficult. Help the Aspergers youngster by giving him as much advance warning as possible. If a field trip is coming up, take time to explain to the class when it will happen, how they will get there, when they will return, how they should behave on the bus and at the event, and so on. If you know a fire drill is coming up, explain the escape route, what the alarm will sound like – and be prepared for a potential panic attack on the day of the drill. Children with Aspergers are sensitive to certain sounds and a loud alarm may actually cause them physical pain or discomfort. It may even confuse their thinking. If they need to cover their ears, let them. If they need someone to take them by the hand and lead them out of the building, do that, or assign someone in the class to do it for you.

When it comes to communication, children with Aspergers tend to talk at children rather than to children. Because of this, they come across as rude or blunt when that is not their intent at all. Being factually minded, a person with Aspergers uses words to state facts. The ambiance of language is largely lost on them. As their educator or parent, it is up to you not to take it personally if your Aspergers youngster says something plainly without regard for the fallout that may be attached to his word choice. Moms and dads and educators need to take on the role of “social coach.” If the words were genuinely unkind, you need to tell the youngster they were unkind, why they were unkind, and what they must do or say to make things right. If the words were innocent but blunt, you need to inform the youngster of this as well, and perhaps give him different words to convey the same idea in a kinder way.

Kids with Aspergers often have an excellent capacity for memorization. On the positive side, this makes Aspergers kids very good at rote memorization and recitation of fact. On the negative side, they are not as good at application or understanding why certain things are so. For example, if you have an Aspergers youngster in a literature class, he can tell you all about what is happening in the story, but may be hard pressed to explain why the characters are acting and reacting the way they are. In your role as social coach, you can help your Aspergers child by explaining the reasons behind the behaviors of the characters in a story.

Oddly enough, children with Aspergers can be very good at role-playing. Many children with Aspergers say they study human behavior and do their best to mimic it in order to fit in. As a result, some of them make excellent actors and impressionists. So if you have an Aspergers child in your speech class, don’t write them off because they cannot interact well in normal social situations. Use their memorization skills to their advantage. Beyond just memorizing the words, help them to memorize gestures and vocal inflections to bring a role to life.

The biggest obstacle for children with Aspergers is what has been described as “social blindness,” an inability, or limited ability, to perceive and respond to social situations. This social blindness manifests itself in a number of ways. Aspergers children…

• do not understand personal space and social distance and may either stand too close to someone or too far away
• do not understand the give-and-take of language
• fail to read their audience and therefore do not see when their listeners are becoming bored or irritated
• talk at children rather than to children because they use language primarily as a means of communicating fact

It is often during play that a youngster learns how to interact socially. For the parent or educator of a youngster with Aspergers, play time can be very instructive both for parent or educator and for the youngster with Aspergers. The playground offers many opportunities for social coaching.

As a general rule, most children with Aspergers do not like participating in team sports. There are too many activities going on at once for them to process. That’s not to say that all children with Aspergers avoid team sports. Of the five Aspergers students I had one year, two of them played team games at recess quite regularly. One was only mildly affected with Aspergers, and the other had all the classic characteristics of Aspergers. It just goes to show that Aspergers does not affect everyone in exactly the same way. In fact, the affects of Aspergers can vary from time to time within in the individual.

When kids with Aspergers do participate in a team activity, they are very much “by the book.” They will cite every infraction they witness and be adamant that all the rules be strictly enforced. While this can be trying for you as the parent or educator, it is also an opportunity to teach the youngster about…

• Diplomacy: “Yes, so-and-so did go out of bounds, but screaming about it at the top of your lungs and demanding like the Queen of Hearts that their heads be removed, might not be the best way to enforce the rules.”
• Flexibility: “Remember, we’re not playing for the championship here. We’re just playing for fun. Just enjoy the game.”
• Seeing things from other perspectives: “I know you think so-and-so broke that rule, but just because you saw it that way doesn’t mean the referee saw it that way, or that he saw it all.”

At play, kids with Aspergers will play ‘with’ other kids, but not in the fluid and interactive way typical of most kids. If the Aspergers youngster is playing with other kids, it is often in the role of director, and the Aspergers youngster expects the other kids to play according to his interests. So, for example, if the youngster happens to have an interest in The Hobbit, someone will have to play Gandalf, someone else must play Samwise Gangee, and the Aspergers youngster himself will, of course, play Frodo Baggins. Everything is fine until the other kids grow weary of being directed, and decide to go and play something else. It is not at all uncommon to find the Aspergers youngster in a crowded playground playing by himself, or announcing that there is no one to play with, or that no one will play with them.

All of these playground scenarios are opportunities for moms and dads and educators to help the youngster with Aspergers deal with similar social situations. The youngster may not fully overcome all of his social hurdles, but the playground can help to build his social repertoire.

When our son Jake was diagnosed with Aspergers, my wife and I were devastated at first. We didn’t know what it was, or what it would mean for his future. All we knew was that our son Jake would have Aspergers all of his life. We couldn’t kiss it and make it better. We couldn’t make it go away. And many of the struggles associated with Aspergers, Jake would have to face alone. For a parent, nothing could be more heart rending. But as we have come to understand Aspergers, and as we have come into contact with others who have it, we have also come to understand that while Aspergers does have its limitations, within those ‘limitations’ is the potential for great achievement.

Is There A Cure For Aspergers?

If you know of a youngster who is having a greater degree of language impairment than other kids or has diminished communication skills and also exhibits a restrictive pattern of thought and behavior, he may have Aspergers. This condition is more or less similar to that of classic autism. The main difference between autism and Aspergers is that the youngster suffering from Aspergers retains his early language skills.

The peculiar symptom of Aspergers is a youngster’s obsessive interest in a single object or topic to the exclusion of any other. The youngster suffering from Aspergers wants to know all about this one topic.

Sometimes their speech patterns and vocabulary may resemble that of a little professor. Other Aspergers symptoms include the inability to interact successfully with peers, clumsy and uncoordinated motor movements, repetitive routines or rituals, socially and emotionally inappropriate behavior, and last, but not least, problems with non-verbal communication.

Aspergers kids find difficulty mingling with the general public. Even if they converse with others, they exhibit inappropriate and eccentric behavior. The Aspergers patient may always want to talk about his singular interest.

Developmental delays in motor skills such as catching a ball, climbing outdoor play equipment or pedaling a bike may also appear in the youngster with Aspergers. Kids with Aspergers often show a stilted or bouncy walk, which appears awkward.

The therapy for the Aspergers mainly concentrates on three-core symptoms: physical clumsiness, obsessive or repetitive routines, and poor communication skills. It is unfortunate that there is no single treatment for the kids suffering from the entire three-core symptoms. But professionals do agree that the disorder can be cured when the intervention is carried out at the earliest possible time.

The treatment package of Aspergers for kids involves medication for co-existing conditions, cognitive behavioral therapy, and social skills training. The Aspergers treatment mainly helps to build on the youngster’s interests and teaches the task as a series of simple steps and offers a predictable schedule.

Is There A Cure For Aspergers?

Although kids suffering from Aspergers can mange themselves with their disabilities, the personal relationships and social situations are challenging for them. In order to maintain an independent life, Aspergers kids require moral support and encouragement to work successfully in mainstream jobs.

Studies are on the way to discover the best treatment for Aspergers, which includes the use of functional magnetic resonance imaging (MRI) to identify the abnormalities in the brain which causes malfunction of the same, which in turn result in Aspergers. Clinical trials are being conducted to identify the effectiveness of an anti-depressant in Aspergers kids. Even the analysis of the DNA of the Aspergers kids and their families may cause a breakthrough in the treatment of the Aspergers.

Should I tell my child that he has Aspergers?

We struggled with this issue for some time, and eventually sat our son down and told him. In our case, he kept asking why the other kids called him "weird". To tell or not tell your youngster or others of their diagnosis of Aspergers (high functioning autism)? It’s really a personal decision that has pros and cons on either side. Some parents may struggle with telling a 3 year old they have Aspergers, fearing they may not understand; that it could frighten them.

While saying directly “The doctor says you have Aspergers,” may be unnecessary, talking about the characteristics of Autistic Spectrum Disorder in a way the youngster can relate to is vital in helping the youngster towards self-acceptance as they mature.

Being open about your youngster’s different way of thinking and processing, and connecting those traits to Aspergers characteristics is the key to success in helping your youngster towards self-acceptance. The earlier they become comfortable with Aspergers ‘shop-talk’ the easier it will be when they are pre-teen and adolescent age. Kids with Aspergers need to be able to focus on their strengths more than ever at this age when their social-skill deficits can seem more prominent.

Remembering though that people on the Autistic Spectrum do not always ‘connect the dots’ in the correct order, it may be necessary at some point to say “You have Aspergers” for clarification.

So should you tell your youngster’s part-time employer about Aspergers…and if so, when? When they are applying for a job? When they get the job? Or never?

This also comes down to personal choice. However, sometimes it can be helpful to have an employer support contributing to the success of your youngster’s employment experience.

Our son, Jon, doesn’t like to mention it when he’s applying for a position or when he initially begins work. He doesn’t want it to influence the employers’ decision to hire him, one way or another. Then he doesn’t like to tell them of his Aspergers too soon, because he doesn’t want to “freak them out”. But ultimately he likes to tell them of his diagnosis, and explain to them what that means, because he feels like he’s hiding a secret if he doesn’t. As he says, “It’s a part of me, and they can’t know who I really am unless they know of my Aspergers.” (Sometimes I swear he’s a 44 year old inside a 14 year old body!)

So far we’ve been very fortunate in the employer’s who have given our son a job. They’ve been very understanding, and have helped by finding out about Aspergers, and matching the strengths of Aspergers with the duties/tasks assigned to him. They’ve praised his work ethic, his efficiency, his enthusiasm and manners. They’ve been understanding and compassionate when his anxiety or depression has caused him to miss work, and not held it against him the next time he’s there. Just as someone may miss work due to asthma, or the flu they understand that depression/anxiety is part of Aspergers.

The members of our family have reached the stage where telling about Aspergers is just like saying “my eyes are blue” – a comment that helps the listener come to know you (or your son or brother) a little better. After all, life is a never-ending quest to make connections with others, whether fleeting or lasting!