The Autism File

Life With An Asperger Child
Sinnet Webber
Jordan’s Mother

Life with an asperger childLiving with Jordan is a cross between sharing a house with Harry Enfield’s ‘Kevin’, a teenager with depression and mood swings plunging one minute into despair and the next over-excited - and a two-year old with violent temper tantrums. At nine years old his outbursts are extremely hard to handle since he is big, healthy and strong. He argues, he hits, he punches, he kicks, he resists, he screams, he slaps, he bulldozes you, and abuses you, and can cause real physical and verbal damage.

Jordan is so unpredictable that you never know what he is going to do or what will happen next. He is defiant, challenging, stubborn, argumentative, manipulative, pedantic, difficult, aggressive, contrary, oppositional, violent, demanding and inflexible and is extremely adept at attention seeking ploys. He also likes to be the centre of attention and will do anything to gain it whether negative or positive. He uses disruptive behaviour to achieve his objectives.

He is resistant to changes in routine. He seems to be full of anger and frustration yet suffers extreme anxiety. He does not seem to be a content or happy child, suffers with low self-esteem/ no self-worth and has a strong sense of his own failure. In fact he will not try anything new if he feels he cannot cope with it immediately. If he senses he has failed something, he refuses to attempt whatever it was again (I call him ‘a refusenik’). He is very good at pretending to faint if things don’t go his way, e.g. when out shopping and he has been refused something he wants. He can be a danger to himself and to others when he does this, especially tearing across roads without looking.

He does runners if he feels slighted, ignored, crowded, criticised or is annoyed in any way. He will escape from the house in these circumstances if the door is unlocked. He has also been lost in town, in parks, on trips etc on many occasions - even involving the police.

Jordan has been a statemented child since he was five. For more than a couple of years he was initially observed and assessed and all the experts sat on the fence without a concrete reason to explain his erratic behaviour. At first it was mooted that he be suitable for a speech and language facility but, no places were available.

His final diagnosis was ‘high functioning/able’ autistic Asperger Syndrome which I agree with since he has all the behaviour problems and difficulties that this diagnosis entails. I also believe him to be ADHD and suspect possible dyslexia though this is unofficial. He is also a typical Virgoan! Jordan attends a specialist Autistic Spectrum Disorder Integration Unit within a mainstream school, one of the first experimental facilities of this kind in the county.

Life with an asperger child In retrospect all the problems I experienced with Jordan in the baby years were indications that things were not quite as they should be. I was 36 when I had him and he is my only child. Not through choice I was (and still am) a single parent who, at the time, was stressed out with working full time and the lack of support from his father. His father is over twenty years older than me, married with no children and certainly did not want any. Although he and I had been involved for over ten years, he just felt that he wanted nothing to do with a child and walked out. It was five years before I saw him again and Jordan met his Dad. Ironically it was getting a diagnosis that brought us together again as he probably felt guilty and wanted to be of some help.

Life with an asperger child

At first, Jordan didn’t latch on to breast feed. He had early jaundice and was colicky for the first three months. Nothing unusual I thought since I had no one to tell me otherwise and no experience of my own to compare against since my working career as a secretary had never involved children, and there were none in our immediate family. Still, he was a good baby. Tractable, compliant and easy. Between the ages of 1 and 2 he was a delight with a wonderful sense of humour and a gorgeous deep giggle and such alive eyes. He went through all the normal stages of development - sitting up, crawling, weaning, potty training - much on a par with his contemporaries and even had a reasonable vocabulary.

His play consisted of knocking things down, or sweeping things away off tables, or just holding objects but I figured that that was what boisterous boys were probably like. From the ages of one to two he watched the same video again and again and again to the exclusion of all else for a year. It sent me crazy, but he would throw a wobbly if he couldn't watch it so I just endured. He learned at a very early age how to operate the video recorder - including feeding it rice cakes!

Life with an asperger child At just over two years old he had a nasty fall out of his buggy going down a slope and hit his head. I had an ambulance trip and a long wait in Casualty with him going berserk. They used a kind of glue rather than attempt stitches as he was so wild. The following day we flew to Holland to stay with friends for Christmas and it was an extremely fraught visit since these people’s children were now grown up and they couldn’t understand why I couldn’t control my little dynamo. This made for bad blood between us and to this day that friendship has never recovered. That same year I lost a fair number of friends due to Jordan. He was never directly blamed but I felt the vibes.

Luckily I was making new friends too since I was meeting other parents through nursery and his childminder. Years later I met the lady in charge of the crèche he was at and, when told of his diagnosis, she said ‘I always thought there was something wrong with him’. If only she had spoken up earlier it may have saved years of heartbreak. Still, she had enough on her plate I suppose what with all the other children and their respective idiosyncrasies. It was the health visitor, who at his 18 month check said, after testing him, that he wasn’t ‘developing as he should be’. A year went by waiting for an appointment to get his ears tested. He wasn't deaf. If anything, his hearing was super sensitive and he hated loud or sudden noises, crowds and activity. The ‘terrible twos’ were terrible, the threes worse, the fours even harder and so it went on. I felt totally inadequate and out of control of my child. Naturally I worry about what might happen to him in the future - especially in this overcrowded, competitive society we live in.

What will happen if his aggression turns, in later life, into violence? I have visions of him as a delinquent teenager turning to a life of crime, or even a depressive adult; and I also feel he may be easily led by his peers and I dread the kind of influences he will be subjected to. Will he ever fit into society? Will he ever be happy? Who will care for him when I am no longer around? All the usual questions but with the added worry that a handicapped child - even if he isn’t all that severely disabled - can bring.


In issue 1
Autumn 1999 …

Jonathan Tommey reports
Secretin: towards
a clearer picture
Harvey's AIT
Homeopathic secretin: A mother's report
Shunned, brickwalled, tired but hopeful
The homepathic treatment of autism
Protocol for the treatment of autism
Will he or won't he eat it
Life with an Asperger child
Our search for intervention and support
Autism and MMR / Testing for Parasites