Authors: Anna Kennedy
The more I read about Asperger Syndrome, the more it
seemed I was reading about Patrick. There was his inability to understand a joke; his stilted, exaggerated language and the need to keep sentences clear and concise when speaking to him; the way he excels at learning facts and figures; his lack of social skills or consideration for the feelings of others; and his difficulty in understanding abstract concepts such as religion or literature and nonverbal signals.
People with Asperger Syndrome usually prefer their day to follow a set pattern – they do not react well to change or delays such as a traffic delay or a late train. They tend to be very punctual and, far from being a handicap in later life, these traits can actually prove to be assets when the child grows into adulthood and is seeking employment. Most employers would welcome an employee who is totally focused on their subject, hates being late, and is dedicated and reliable, wouldn’t they? Of course, all this would need to be balanced by the understanding of employers and work colleagues.
As for the causes of Asperger Syndrome and autism, well, these are still under investigation. It seems some experts believe there is no single cause for Asperger Syndrome, that it arises from a variety of physical factors that affect the development of the brain. It is not assumed to be caused by either emotional deprivation or a person’s upbringing.
Autism, it is believed, could be associated with a variety of conditions that affect the development of the brain before, during or soon after birth. Genetic factors are also considered to be relevant.
So now, at last, I was beginning to understand what Patrick, Angelo, Sean and I would have to spend the rest of our lives
dealing with, but one thing common to both conditions was the importance placed on early diagnosis and intervention in order for sufferers to obtain a better chance of appropriate help and support.
Where on earth was that for Patrick?
Now, however, I can better understand why it’s so difficult to diagnose autism as the spectrum is so wide. But at least, armed with more information, Sean and I were now in a position to make informed choices for our sons’ wellbeing.
Of course, so far I have touched on only two aspects of the autistic spectrum’s disorders. There are others, though. The term semantic-pragmatic disorder has been around for nearly 15 years. Originally it was used only to describe children who were not autistic. Features of the condition include delayed language development; learning to talk by memorising phrases instead of putting words together freely; repeating phrases out of context – especially snippets remembered from television programmes; muddling up ‘I’ and ‘you’; problems with understanding questions – particularly those involving ‘how’ and ‘why’; and difficulty in following conversations.
Children with this disorder have problems understanding the meaning of what other people say, and they do not understand how to use speech appropriately themselves. Soon after this condition was recognised, both research and practical experience yielded two important findings: first, that many people who definitely are autistic have this kind of language disorder – Dustin Hoffman’s character Raymond in Rain Man being a typical example – and, second, most of the children diagnosed as having semantic-pragmatic disorder also have
some mild autistic features. For example, they usually have difficulty understanding social situations and expectations; they like to stick fairly rigidly to routines; and they lack imaginative play.
Research has shown that there is probably a single underlying cognitive impairment that produces both the autistic features and the semantic-pragmatic disorder. The fact that children with semantic-pragmatic disorder have problems understanding the meaning and significance of events, as well as the meaning and significance of speech seems to bear this out.
The idea of an autistic continuum has been used to explain the situation. All the children on the continuum have
semantic-pragmatic
difficulties, but the degree of their other autistic impairments can be severe or moderate or mild. This parallels the autistic continuum relating to Asperger Syndrome, where all the children have a marked social impairment but those with Asperger Syndrome have only a relatively mild and subtle language impairment.
Pathological demand-avoidance syndrome (PDA) is a pervasive developmental disorder which, it is believed, is related to, but not the same as, autism or Asperger Syndrome. Individuals with PDA are typically socially manipulative with people, and, therefore, superficially socially skilled, and this sets them apart from those with autism and Asperger Syndrome.
The most central characteristic of people who have PDA is their obvious and obsessional avoidance of the ordinary demands of everyday life. This impacts in a very detrimental way in adult life when it comes to, say, meeting the demands of work. People with PDA lack a clear and defined sense of self,
and, as a result, do not view themselves as being responsible for their actions. This latter characteristic is particularly significant in terms of social conformity.
For this reason, a person with PDA is highly motivated to avoid demands and is so able in this domain that they may even appear manipulative as a variety of strategies are used with such determination towards the desired outcome of escaping demands.
Characteristics are believed to include a continual resistance and avoidance of ordinary demands of life; sufferers may demonstrate surface sociability, but have an apparent lack of sense of social identity, pride or shame; there can be a tendency for rapid mood changes; they might be impulsive or led by a need to control; or they may be comfortable in role play and pretending.
A person with PDA may present a language delay or obsessive behaviour. They may develop ‘illnesses’ to avoid doing something or deliver an endless stream of excuses. Some ‘normal’ people may admit to doing this occasionally in order to get out of doing something they don’t really want to do, but someone with PDA will do this almost all the time.
T
he more I discovered about Asperger Syndrome, the more it dawned on me that Patrick was not my only concern in this field. As I read what I can only describe and recommend as a marvellously helpful and easy-to-understand book – Asperger Syndrome by Tony Attwood – a penny suddenly dropped: Patrick was not the only person in my family presenting the symptoms. So many of the traits Attwood describes in his book also seemed to apply to Sean.
Sean is certainly a little eccentric: he has very specific, pedantic speech; he’s extremely intelligent; he likes structure to his life; he doesn’t like holidays or changes in routine; he tends to relax only when he’s studying; he has very black-and-white thinking patterns with no grey areas… I could go on and on.
I convinced myself I was reading too much into it – my emotions were already all over the place. However, my suspicions were further strengthened when I attended an autism workshop run by Christina Bertolucci.
Christina has a theory that everyone has a little bit of autism in them. As she says, we all like to have a certain amount of routine in their lives, to do things in a certain way – it’s just that autistic people present more extreme examples. Christina actually took me to one side and quietly asked me – after Sean and I had attended three or four of her workshops – whether Sean had ever been diagnosed with Asperger Syndrome.
‘What makes you ask me that?’ I asked.
‘Oh, nothing,’ she replied.
Could Sean really have Asperger Syndrome as well? After all I’d read, it certainly seemed to me as if he might well have the condition; and later, when Sean and I were experiencing some difficulties, Christina, in a private chat, told me she believed that Sean did, indeed, have it.
To be honest, I was absolutely devastated, though it would certainly explain so many things that had happened in the past. For instance, our first meeting: ‘Have you got a rod up your back?’ he’d asked, which seemed a really strange thing to say, even though I’d been sitting bolt upright at the time.
Sometimes I find it difficult to tell what sort of mood Sean is in. He can look as if he is angry even if he’s not at all. He’s often telling me not to read so much into it. Sometimes he says it’s just because he’s really thinking carefully about something.
Sean has always been very independent – even moving down to London at the tender age of 18 on his own to study. In fact, ever since I’ve known him he’s been studying. He’s still studying even now. He has a thirst for knowledge and is always looking out for the next course to take up. He has a degree in economics and management; a Masters in computer science; he’s a
qualified barrister; he has a law diploma; he’s completed loads of Microsoft engineering examinations; and he can read really quickly, just by flicking through books. And there are strong links with superior intelligence: Asperger Syndrome is thought to have affected both Sir Isaac Newton and Albert Einstein.
Then there was the fact that Sean just seemed to handle Patrick’s and Angelo’s conditions in a totally different manner from me: I’d been the emotional one, while Sean had either seemed to bury his head in the sand, or had handled things in a far more practical, matter-of-fact manner.
It would also explain why he never seemed as keen as I was to share a nice cuddle. Sean was never a touchy-feely person like me and, sometimes in the past, I have to admit I’d wondered if I had married the right person – I’d sometimes ask myself whether he loved me as much as I loved him.
Gradually, past experiences were now beginning to become clearer, to fall into place. Sean wasn’t being awkward or inconsiderate at all, it’s just the way he was. Nevertheless, there would be so many times ahead of us when this would prove problematic, particularly when certain emotional situations would arise and I would feel very alone in coping with them.
As for Angelo, as far as I’m concerned, he changed so much after he had his MMR (Measles, Mumps and Rubella) vaccination. Afterwards, he didn’t want me to touch or kiss him; he’d spend a lot of time in the corner of the room and I really had to work hard to get him to accept any form of physical contact from me. We’d experienced nothing like this with Angelo prior to his having the vaccination. Now he was in a world of his own.
I’m not saying having the MMR jab causes autism, but I do believe that, if someone is predisposed to the condition, it may play a part in pushing them over the edge. I firmly believe that if Angelo had not had the MMR jab, he would have been as able as Patrick. He definitely changed for the worse after the vaccination. He had a high temperature, he suffered from measles and a severe ear infection, and so many other conditions.
All the walking, talking and everything he should have been doing – as he had been prior to the jab – had disappeared. When I look at photographs of Angelo taken before he had the jab he looked quite normal, and there was good eye contact. Afterwards, his eyes just had a glazed look about them and all eye contact disappeared. He would have major tantrums, scream and clap hands violently, fixate on the patterns on the wallpaper and play inappropriately with toys.
What’s going on with this boy? I’d wonder. What’s going on in his head? Sometimes when his behaviour got extreme I would become angry with him, then I would get angry with myself because it wasn’t his fault. I just wanted to take away this horrible autism that had taken over my son’s life.
There’s an organisation known as Justice Awareness and Basic Support (JABS), through which parents have collected video evidence of their children prior to and after receiving the MMR vaccinations.
Members of JABS, a self-help group that neither recommends nor advises against vaccinations, has campaigned to sue the British Medical Council. JABS was set up to promote
awareness and understanding about immunisations and to offer basic support to parents whose children have developed problems with their health after receiving vaccinations. The organisation has been battling for justice for vaccine-damaged children and for their rights to receive compensation. I have to say I have some sympathy with it, particularly as its views seem to back up my own doubts about the safety of the triple vaccination.
JABS’ website claims the government accepts that childhood vaccinations could seriously damage a child and that a
vaccine-damage
payment unit has been set up to evaluate parents’ claims on behalf of their injured children. But, according to JABS, the criteria are so strict that most claims are rejected, a child having to be 80 per cent disabled by vaccine with the onus on the parent to provide proof. After listening to some of the parents at JABS, I’m now convinced the MMR vaccination, at the very least, made Angelo’s condition far worse than it might have been, had he been given the injections separately.
The British Medical Council tells us that autism manifests itself if it’s not very severe when a child reaches 18 months, and that’s when Angelo had his MMR jab – though they would probably insist that’s when he would have shown clearer signs of autism in any case. But, to my mind, it’s all to do with saving money. Why can’t they give the measles, mumps and rubella injections separately as they still do in so many other countries?
The rise in confirmed cases of autism has soared in the UK since awareness and detection of the condition have improved. Is that anything to do with the introduction of the multiple
inoculation? I’m convinced the MMR jab pushed Angelo over the edge and into a world of his own.
This argument received high-profile backing when seven medical experts – six of whom were from the Autism Research Centre – monitored 12,000 primary-school children and came to the conclusion that one in 58 of them may be showing signs of the condition. This is a staggering figure that almost doubled the previously believed number – and a figure that two of the experts involved in the study believed may be linked to the MMR jab. The study was conducted over a three-year period between 2001 and 2004. Two of the authors of the report, Dr Fiona Scott and Dr Carol Stott, suggested that the MMR jab could be a factor in this estimate.
Nationally, if the findings of the study are accurate, this could mean that 210,000 children under 16 may have an autistic spectrum disorder, compared with the one in a hundred that had been believed from previous studies.
We have to bear in mind, though, that this research was based on statistics, which is one of the reasons why the leader of the team, Professor Simon Baron-Cohen, rejected this view. Professor Baron-Cohen believed other factors could be behind the condition, such as children’s exposure to hormones in the womb – especially testosterone – and he also believes the rise in figures might partly be attributed to a better diagnosis and a broader definition of the condition.
The medical world has been divided on this issue for years. Back in 1998, Dr Andrew Wakefield, from the Royal Free Hospital in London, voiced his concerns over the MMR vaccine, suggesting it could be the cause of inflammatory bowel
syndrome and autism in children. For his trouble, Dr Wakefield’s claims were derided as bad science and subsequently he found himself, with two former colleagues, hauled up before the General Medical Council to answer charges relating to their claims.
When he was about three years old, Angelo’s tantrums often stemmed from frustration when he could not make anyone understand what he really wanted. It was very tiring being with him, particularly when he continually tried to pull me towards whatever he wanted.
He’d lead me to the fridge.
‘What does Angelo want?’
Gradually I was able to get him to say, ‘I want… ’ and then I’d say, ‘Yoghurt? Does Angelo want a yoghurt?’
Then I’d repeat it again and again until he gradually learned to say it himself.
The best thing the borough did for us was to introduce us to Jocelyn Phillips from Portage, who told me about pictures. She told me to take pictures of all the things Angelo liked, specific toys and clothes, places he liked to go such as a swing in the park. At the time Angelo had very little understanding when I spoke to him about where we were going and why. So, when I intended to take him there, I’d show him a picture of the swing with the word swing written underneath it.
‘Mummy’s going to take you to the park.’
I’d taken a picture of his favourite cup and I wrote the word cup underneath it.
‘Angelo’s going to have a drink now.’
This proved to be a most beneficial method of getting a message across, although at the time we were not sure how much information Angelo was taking in. Was he reading the words and understanding them, or was it more mechanical?
Whatever it was, it certainly helped him along. His vocabulary improved to such a point he would say ‘drink’ or ‘apple’ whenever he wanted one, or ‘I want some’, ‘good night’ or ‘good boy’. Eventually I created a photograph album with a single photo on each page – a bed, a cup, food he likes and pictures of the doctor’s surgery and the hospital, which were both used on an all too frequent basis.
Jocelyn’s support helped to keep me sane and her method of putting pictures into words also helped Patrick, who was always looking for visual clues. Angelo’s speech was still very limited, so a picture of Mum and the word Mum, or a picture of a car and the word car, predictable as they were, proved very helpful, particularly since, with Sean out at work, I was struggling to cope with two children with very specific needs.
Yet, although Angelo’s speech was slow, his intelligence was never in doubt as far as I’m concerned. Using his letter cards he was able to spell difficult words such as dinosaur much earlier than many other children of his age.
Like Patrick, Angelo loves to fast-forward and rewind videos to his favourite sections of his favourite films. Even now, as we lie in bed, we often hear Angelo watching one of his videos with the phrase ‘Disgusting, disgraceful, despicable!’ being played over and over and over again. At three in the morning it’s enough to drive you completely mad!
When he was a small child, his fear of water only made
matters worse. He’d scream blue murder at wash or bath times, and would not use a toilet because he could see the water in the bottom of the pan. Rainy days, needless to say, weren’t easy. Angelo would also carry a blue brick around with him and, whenever he lost that bloody brick, well, woe betide us – he’d go absolutely mad. To save our sanity, I went out and bought a few more, just in case of emergencies. He often formed attachments to certain other toys. One favourite was a tea set and he would spend ages offering cups of tea to his teddy bear. Other particular attachments included a football and a toy hammer.
Like Patrick, Angelo would become most upset if I was out of his sight. The situation got so extreme that I had to reduce my working hours in order to spend more time with him.
Going shopping was a nightmare. When we got out of the car, if a motorbike or lorry went by he’d just scream, kick and throw himself on the ground, which would prompt Patrick to start shouting, ‘Why’s he doing that in the middle of the road?’
I decided we had to practise going to the shops. I would get Angelo out of the car and walk him to the traffic lights. Another day I might try to take him a little further down the road. Like this, I managed, within a two-month period, to get Angelo as far as the local shopping centre. However, when I did manage to achieve this, going around the stores was often problematic, particularly as Patrick had this thing in his mind about straightening boxes of cornflakes and other products on the shelves as we walked down the aisles.
Sometimes, if I was in a hurry, I’d help him straighten things up myself, then I’d realise people were looking at me and
probably thinking what a bloody mad woman I was! After a while, though, I realised this was not good for Patrick. I was letting him control me. I’m the parent, I’m in charge and I have to give him boundaries. I discovered later on that the more autistic people find themselves in control, the more anxious they become. Responsibility provokes anxiety. Looking back, I realise that I was just trying to avoid any tantrums in the middle of a crowded supermarket.