The Asperger Syndrome Child

Our son John was a beautiful baby. He was 8 days late then arrived within three hours of contractions starting. He had voided in the womb and didn't breathe or cry immediately, which was very worrying for us. He had low blood sugar and was transferred to a larger hospital as our small town hospital didn't have the required facilities. He had initial trouble feeding but soon thrived. I breast fed him for 15 months and loved every moment.

His speech was delayed although we didn't realise this until after the birth of his sister when the clinic sister picked up on it. We, as his parents, could understand him perfectly. He worked with a speech therapist for about 12 months.

He also needed help with dealing with the fact that he had a sibling. He loved her to bits (and still does) but had difficulty understanding that she was there and where she'd come from.

By this time I was aware that 'something wasn't right' but didn't know what it was. He had great difficulty in sequencing anything (pictures showing a story for example) and absolutely could not do, and wouldn't even try, any form of jigsaw puzzle, no matter how simple. At playgroup he never joined in with the others at fruit and drink time, preferring to play by himself in the sandpit. He had one friend at that time as he had trouble interacting with the other children.

At school he blossomed academically. By October of year one he was reading at a year 4 level and his teacher soon learned that John needed extra maths sheets as he had finished everything correctly way ahead of the rest of the class.

However, once John started year one he was teased to the point of cruelty. His bag would be thrown into the bushes daily, his lunch thrown away and his clothes torn. The bullying became physical and he was hurt many times. Back in those days the teachers didn't do much about bullying and our complaints fell on deaf ears. As we lived in a small country town there was no other school we could transfer him to. These children who bullied him were the same children he had gone to playgroup and kindergarten with. They had known him for as long as any of them could remember.

Life was horrible for John and it took a lot of love and explanations from us to keep him going. He didn't understand why everyone picked on him all the time. He was devastated when his only friend moved away as he lost the only person who would talk to him and understood him and stood by him and protected him from the worst of the bullying at school.

We were struggling as parents as well as at that stage we had no diagnosis for John, just the facts that he was teased and bullied daily, was academically very bright and didn't mix in well with his peers.

We did the round of psychologists and psychiatrists and they ruled out OCD and Tourettes but couldn't offer any further ideas or help for John or us.

It ended up being a chance conversation with an acquaintance that gave us the diagnosis of Asperger Syndrome. I was discussing John's problems at school and Steve picked it up immediately. His son had exactly the same mannerisms and problems that John did.

By this time we had shifted to another country town, one closer to the capital city. We were hoping that a fresh start would help John, we needed to be near a 5 year high school to avoid him having to leave us and go to boarding school after year 10 and we wanted to be closer to a greater range of specialists to obtain the best help and resources possible. An interesting side note is that John's year 7 teacher (his first year in the new town) felt there was some form of autism problem with him. (This was before his formal diagnosis.) She had observed behaviors that were 'normal' for John such as him suddenly doing star jumps or wandering around the class during lessons.

Changing schools hadn't helped, he was still bullied and physically injured (two broken teeth), but the teachers at his new school took a strong stance on bullying and the offenders were suspended. This didn't really help John as these kids then blamed him for their suspensions. The bus ride to school was terrible until the bus driver put the worst offenders off the bus and made their parents take them too and from school - a huge inconvenience no doubt. But at least he wasn't getting hit with rulers or poked with compass points when the driver wasn't looking.

The formal diagnosis at age 12 was both a shock and a relief. A shock that our beloved son really had a disability (there were many tears shed) but a huge relief that now we knew what was wrong we could work on finding the correct ways to help him.

Please also see Living With An Asperger Syndrome Child for more on John and Aspergers - A Lonely Life for a description of what Aspergers Syndrome is in layman's terms.

These resources are also invaluable for the parents of Asperger children.
The Essential Guide to Aspergers Syndrome and Parenting Aspergers Resource Guide





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John has had some interesting 'foibles' during his life. Parents of other Asperger Syndrome children will no doubt recognise some of them. They all took a lot of time, enouragement, patience and above all love, to get him through them.

There was the time he started collecting paper rolls. Mostly empty toilet rolls but there were the occasional paper towel ones in there as well. Of course he needed somewhere to store them so he took his clothes out of his chest of drawers and put them (the clothes) under his bed so he had plenty of room for his paper rolls. No matter how often I put his clothes back where they should be, I'd find them under the bed again and his beloved paper rolls back where he wanted them. We solved that one by leaving his clothes where he'd put them and letting him sort them out each day when he needed his school clothes.

He was (and still can be) a time waster. He could find any excuse possible as to why he hadn't put his shoes on ready to go catch the school bus. That one was cured in one easy step - we made him walk to the bus in his socks on a cold frosty morning. Cruel you might ask? No, just pragmatic. After weeks of running the school bus late why John procrastinated, something had to be done.

Ask John a question and we got a book in reply. He could go on for ages about his answer with incredible detail. I'm not sure how his teachers coped with this one but we just used to ask for 'the page, not the book'. One of my favourites was after he came back from a scout camp (I was on tenderhooks until he was back safely) and he related the story of the scout master who was apparently amused at the antics of some of the boys on camp. John's comment: 'Blaze (the scout master), with a wry smile on his face, said to the others...'

One of the symptoms of children with Aspergers Syndrome is that they love their routine and get very upset if it is not followed. Before John's diagnosis we were unaware of this and did the best possible thing for him unknowingly. We would often bundle both kids in the car and tell them we were 'going there and back to see how far it is'. It could have been a trip to the beach, to see a new foal, to speedway or anything else that we knew the kids would love. This helped stop John forming his set routine as he never knew when we'd up and go somewhere.

Another symptom is a total aversion to loud noise, something else we were not aware of. A surprise trip to watch the dragster cars showed us that he couldn't handle the noise. Even with earmuffs on John got as far away as he possibly could from the sound. He loved the cars and watching the flames shoot out the back, he just couldn't handle the noise. We slowly introduced him to loud noises through listening to different types of music and slowly increasing the volume until he was able to handle most loud sounds. He does have an overactive 'startle factor' when he hears something he's not expecting.

Back in 1995 when John was diagnosed, there wasn't much information on Aspergers available anywhere. Certainly nothing on the internet and when we mentioned his condition to most psychologists they'd never heard of it. The only resource available in our capital city was a centre for the purely autistic and they had a waiting list of 18 months just for evaluation and the cost was fairly steep. We were lucky enough to be told of a psychologist who specialized in Aspergers and took John there monthly. He seemed to understand what was discussed and the plans that were being laid out for him to better 'fit in' with his classmates etc but after a while, once we got home, the plans were thrown out the window and forgotten. I'm not sure how much this was due to his Aspergers and how much was 12yo rebellion but after about 15 months of this we decided to stop seeing the psych and try working with him ourselves. Mostly what was being taught was pure commonsense and we couldn't really afford the 3 hours of travel plus the hour of the session (at $140/hour) when he wasn't taking any notice.

We were able to get him to sessions with other Asperger teenagers where they learned social skills of communicating, taking turns, holding a conversation, handling criticism, and assertiveness. Again I'm not sure how much was retained as things at sporting events etc didn't seem to improve. By this time I was teaching him 1st year high school at home as school had become too damaging for him. The bullying had got to the point where he was being physically attacked and ended up with two chipped teeth. The attackers were suspended from school but they blamed John for their suspension instead of their own behaviour.

We were given the option of having a part time teacher's aide in the classroom specifically for John but felt he was coping with the work intellectually and having an aide would have singled him out for more teasing and ridicule. He didn't really have much trouble coping with the content of the lessons at primary school but he had huge problems managing himself and the social aspects. Time management is not a skill many Aspergers have, no matter what age they are. They have great difficulty prioritizing what needs to be done and will spend hours working on something that's not due for two weeks instead of finishing the assignment that's due the next day.

John, and many other Asperger children (and adults), have very poor organizational skills and will often turn up to class (or work) without their 'tools'. In the case of children it will be no pencils and rulers, the wrong book for the lesson and homework left at home. Handwriting is often extremely poor due to underdeveloped motor skills. Some Asperger children will continue to print (instead of using cursive writing) for many years and this slows down the speed they write. John is one who always prints. I'm not sure if I've ever seen him using cursive writing. Parents have to draw their own line as to how long they are willing to keep reminding their child about pencil case, homework etc. Each child is different but at some stage they need to start taking responsibility for themselves. If not, they will never learn to cope in an adult world.

John has a prodigious memory for trivia. Even now he can remember the final score of a basketball game he was taken to 15 years ago. He can do complicated (for me) maths in his head and have the correct answer. He has his 'obsessions' and can recite facts and dates of birth and death of people in his specific area of interest. He can, and does, spend hours researching these people and what they have done. But he can't remember to feed the dog each night. Even after 18 years he still needs to be reminded though not as often. As a child he could recite a complete 30 minute episode (all characters) from an Inspector Gadget video verbatim, but he couldn't remember to feed the dog. It all comes down to your child's personal interests and priorities and as parents we need to understand this. It's not easy and we need to keep reminding them of the other things in life that must be done, but that's part of being a parent to any child, Aspergers or not.

As John grew, we found other challenging aspects of Aspergers behavior. It took him ages (often days or weeks) to 'get the joke'. He would suddenly start laughing and repeat the joke he'd heard however long ago. At least we knew his mind was still working on it till he found the answer. He hadn't given up. He would laugh at things inappropriately such as a fight during a football match. It wasn't that he found it funny, he was just using the 'wrong' response. Again it was a matter of gently explaining what a better response could be. Don't tell your child that his response is wrong, just let him know of a better alternative and keep reinforcing it.

Aspergers have terrible trouble with any abstract concept. John hit a brick wall in high school when he was introduced to algebra. I also had trouble with algebra at high school! Because it wasn't 'concrete' he couldn't 'lay it out' like he could with other math exercises, and he had great difficulty. One way we used to help him with abstract concepts was to talk about old fashioned 'proverbs' when we were traveling to the city, a 45 minute drive. Proverbs like 'a stitch in time saves nine' and 'a rolling stone gathers no moss' or 'great oaks from little acorns grow'. Some of the answers were hilarious and John saw the joke as well. Over a period of several months we were able to get him to look at these proverbs from different angles and he came up with some truly unique answers that made us adults think again. By doing this we were able to introduce abstract concepts in a fun way and this has helped him enormously.

Whatever age or level your Asperger child is at, get involved in his interests. If he loves airplanes, buy him books or magazines about them. Build a model airplane together. Give him paper or an art book so he can draw them. Display his drawings on the fridge and give them to his grandparents. If possible, organize a trip to a local airport so he can see real planes flying.

Spend as much time as you have available learning about Aspergers. I wish there was this amount of information available when John was diagnosed back in 1995. Be understanding of and respect his inabilities and fears. The fears are very real for him. Above all, be flexible and patient. I read an article about 'special parents for special children' in the doctor's office where John was diagnosed. I wish I'd taken a copy of it but the gist was that God only chooses special people to be the parents of special children. I certainly don't feel' special' or 'more knowledgeable' than any other parent, whether their child is 'special' or not. To me every child is special in their own way and I will continue to love and help both my children in any way I can. Every parent of a special needs child I've spoken to feels the same. There's nothing different about us. We're just ordinary people with extraordinary children.