Autistic spectrum disorder

What is an autistic spectrum disorder?

The word autism comes from two Greek words – ‘aut’ (meaning self) and ‘ism’ (meaning state) – and is used to define a person who is unusually absorbed in himself. Children with autistic spectrum disorder (often called ASD) have, in one form or another, difficulties in developing and retaining relationships with others.

The word ‘spectrum’ indicates that there is a wide variation in autistic behaviour along a spectrum from mild to severe. Autistic spectrum disorder is often described, by medical professionals, as a pervasive developmental disorder. This means that it affects every area of the child’s everyday life.

Compared with this, a disorder such as dyslexia, although serious, tends to influence a child primarily in specific areas of everyday life such as reading, writing and spelling.

There are three elements to a diagnosis of autism and a child.

The national media commonly mention two types: classic autism and Asperger’s syndrome.

Classic autism

Classic autism is present when a child shows all three of the characteristics in the box above: the child has little or no language, does not seem to want to socialise with others and does not play like other children. The child also often has global learning difficulties which, in combination with his other difficulties, clearly and obviously impact on all aspects of his life.

Classic autism is considered to be at the more severe end of the autistic spectrum.

Asperger’s syndrome

Asperger’s syndrome is present when a child, at least in the first two or three years of childhood, appears to develop language relatively normally.

However, as the child’s language develops, his speech shows unusual characteristics. He may develop an excellent vocabulary and can use speech to convey meaning accurately and well, but the flow and rhythm of his speech may sound robotic, stilted and unusually formal.

He also develops significant difficulties with the social aspects of language, which seriously affects the child’s ability to form effective social relationships with adults or other children.

For example, during a conversation on a topic of interest to him, he may not recognise when others become bored or uninterested and persist with the conversation. He also may not realise that the truth may sometimes be hurtful, for instance, at a supermarket checkout, he might innocently point to the woman behind the till and say to his mother, ‘She’s very fat, isn’t she?’.

To a child with Asperger’s syndrome, such a comment is merely a statement of fact; he is not being deliberately rude, and will be completely unaware that the comment will be hurtful. He may also have difficulty appreciating humour.

Although the symptoms present in Asperger’s syndrome influence almost all aspects of the life of the individual concerned, it is often considered to be at the milder end of the autistic spectrum.

The following two case studies illustrate the differences between classic autism and Asperger’s syndrome.

Case study: classic autism

I remember the day that John was born; it was a home birth, just my husband Len and the midwife. My sister was downstairs looking after our other two children.

Everything was normal, John popped out no problem, and I still remember the midwife saying, ‘He’s a lovely little boy’, as she cleaned him up and wrapped him in a sheet. The kids came up to see him, really excited they were, and we made a big fuss making sure they held him properly.

Things got back to as near normal as they can be in the next few weeks but when he was about two months old I noticed that John did not seem to act like his brother and sister had as babies.

He tended to lie motionless in his cot and his eyes didn’t follow other people’s movements yet some ordinary household noises, such as the vacuum cleaner, would cause him to scream and scream until they were switched off. He even cried when the woman next door used her vacuum cleaner which could only just be heard through the adjoining wall.

Although he learned to walk at the same time as my other kids he never learned to talk. He rarely made eye contact with anybody, not me, his father, his brother or his sister. He never reached out to be cuddled and when he was cuddled he seemed to dislike it and often tried to squirm away.

As he got older, he never asked for food or a drink or even pointed at what he wanted. When he cried, which he did a lot, I had to guess what he wanted.

He never pointed at things of interest, like when he first saw a horse or a cow in a field, he’d just looked at it. His brother and sister would have looked at it, then looked at me, then pointed to the horse, drawing my attention to it, making sure I saw it as well. John never did that, never seemed to want to share an interest in anything.

John would do simple things endlessly. All children learn that they can drop things but when John learned to drop things he did it over and over again. He would pick up one of his toy cars, drop it on the carpet, pick it up again, drop it again, and this could go on for hours.

At other times, he would hold the car in front of his eyes and spin one of the wheels, always the same wheel, always looking at it intently. Most children do things like this, but John would do it hour after hour, day after day.

He never seemed to want to play with his brother or sister, and ignored what they were doing. When I took him to nursery school he just curled up in a ball in a corner with his head on the floor, hands over his ears. Nobody could persuade him to join in any of the activities and, after four days, they asked me to take him away and he never went back.

He would often wake up in the night screaming for no apparent reason, and be inconsolable until he fell back into an exhausted sleep. He always woke up at dawn, as soon as the room got light, and would lie in his bed staring fixedly at the small changes of light on the curtains.

As he got older, before going to infant school, he became very upset if any member of the family did not sit in exactly the same place at the table during meal times. At the table, he would eat only yoghurt, custard and jelly, nothing else. When normal foods like chips or meat were placed in John’s mouth he immediately spat it all out as if just the ‘feel’ of some foods actually caused him pain.

He’d often try to eat things that other children would know were just plain wrong. Like when we took him to the seaside when he was six, he tried to drink

‘At seven, he became fascinated by electric switches and fittings. Once I found him, fingers bleeding, fiddling with the bare wires of a bulb he had broken.’

the seawater and eat the sand. He’d try to eat things like newspapers and once tried to eat chunks of plastic he’d bitten off a DVD video disk.

At seven, he became fascinated by electric switches and fittings: if left alone he’d switch lights on and off for hours at a time. Even when light bulbs were hot he’d want to touch them, and often be crying with pain at the heat, moving his hand away but then almost immediately putting it back.

If his hand was moved from the bulb he’d often grab at it again, so fast that on one occasion he shattered the glass and cut himself. Another time I found him, fingers bleeding, fiddling with the bare wires of a bulb he had broken on a bedside lamp.

By the time he was seven, I knew something was seriously wrong, but I didn’t want to believe it. I wanted to believe what everybody said, ‘Be patient, he’s just a bit slow that’s all, he’ll grow out of it’.

The school couldn’t cope any more, even though he had a classroom assistant with him virtually all the time. They suggested that he be assessed and he now attends a special unit for children with autism attached to a junior school.

Going to the unit has made a big difference. The way they treat him at school we try to do at home and although it’s slow it seems to be working.

He’s nine now and just the other day, when his father came in the room, he looked up and for the first time said, ‘Daddy back’. Not a big deal for most children, but a giant step for us.

Case study: ‘Asperger’s syndrome’

James is my only child; he was born in Germany when my husband was in the forces. We came back to the UK when James was five and he started at the local primary school. After the first few days the first thing his teacher said to me was, ‘He’s got a fantastic vocabulary hasn’t he?’, and he had.

The trouble was he just didn’t seem to get on with other children, or rather they did not get on with him. The problem was that, although he really wanted to mix, he always needed to take charge, almost like he thought he was the teacher.

James tended to speak to the other children in an ‘adult way’, telling them off when he thought they were being naughty, and when he told them off he’d use words and a tone of voice that was just like the head teacher.

If you didn’t know him, you’d sometimes think he was ‘taking the Mick’ out of the head teacher, but he wasn’t, it was just the way James talked. He didn’t seem to realise the other kids didn’t like it.

There’s a lot of things about James that make him different. For example, he’s always been, and still is, very fussy about how he dresses and what he wears. He always insists on the same clothes, and always puts them on in exactly the same order.

Dressing in the morning is like following a ritual; he gets very upset if things aren’t exactly right. If, for some reason, we can’t find his school shoes he won’t wear a substitute pair, because James will just say ‘they’re not the right colour black’, and he means it.

In junior school, there were times when the way he spoke caused teachers to think he was rude, the joker of the class. On one occasion, at the end of an art lesson, a teacher said, ‘OK class, shall we clear up now?’.

The teacher used a tone of voice that all the other children recognised as an instruction, not a question. But James had simply shouted out ‘No’ and carried on painting. When the teacher spoke to him later James just couldn’t understand that he’d done anything wrong; as far as he was concerned he’d just answered the question.

On another occasion, when a teacher asked him, ‘Do you know the time?’ James simply looked at his wristwatch and answered the question accurately with a ‘Yes’. James had no idea why the teacher then accused him of being ‘a rude boy’.

Although James understands the literal meaning of words and sentences, he does not seem to understand that sometimes the literal meaning is not what is actually meant.

I remember, when he was very young, he repeated a swear word he’d heard on television when he was talking to his Granny. James really likes her, and will do anything for her, so when she’d innocently snapped, ‘Bite your tongue young man’, that’s exactly what he did. He bit his tongue so hard that it actually bled.

If he’s being a bit slow at some task and we say, ‘Come on James, pull your socks up’, the likely result is that James will actually reach down and pull up his socks.

He never seems to understand that ‘the truth’ can really upset others. On one occasion, at a school assembly a teacher had put his hand to his ear and shouted above the noise, ‘Can I hear somebody talking?’.

Everybody, even the infants, knew what the teacher meant; it was simply a way of asking for everybody to quieten down. But not James; above the slowly reducing noise he’d instantly yelled back, ‘Yes, sir, it’s Jonathan, Simon and Mark’.

As a result of the way he talks, and what he says, James has always been bullied; it’s a major problem, but even I can understand how the other children feel, and why they pick on him, but James, he hasn’t got a clue.

When he was seven, he became interested in ‘Thomas the Tank Engine’, but it went beyond interest and became an obsession. Everywhere he went James insisted on taking all of his Thomas the Tank Engine books and DVDs with him, to school, visiting relatives, even going shopping. They were so bulky he had them in a small rucksack.

And if he couldn’t find one of them he wouldn’t leave the house, even if he was just going swimming. He would, if unchecked, keep a Thomas the Tank Engine monologue going for an hour or more. Adults frequently had to ask him to stop talking, whereas his classmates simply made fun of him or avoided his company.

When he began collecting car numbers life literally became unbearable. For months and months, every evening in the summer and at weekends, he’d go down to the corner of our street and sit on the pavement writing down the registration number of every vehicle that passed.

He even had different books for cars, lorries, vans, buses and motorbikes. He’d fill in book after book, for no apparent purpose other than collecting the numbers. And if you’d let him, he’d talk about them for hours, pointing out interesting numbers.

At the age of 12 years, James was diagnosed with Asperger’s syndrome and a special teacher now visits the school to work with him and give advice to his teachers. I must say things have improved.

The teachers now seem to accept him more and there are fewer misunderstandings about some of the things he says, and how he says things. They’ve also got to grips with the bullying and James now quite likes going to school.

What are the everyday signs of an autistic spectrum disorder?

As mentioned earlier, children with autistic spectrum disorders experience difficulty in one or more of three areas of behaviour.

If your child shows the behaviours in two of these areas, then it is worth visiting your family doctor to discuss possible referral to a paediatrician for a more comprehensive assessment.

Causes, incidence and long-term consequences of autism

Causes

The exact causes of autism are not fully understood. Medical evidence suggests that children are born with autism rather than developing it during childhood.

It is generally accepted that autism has a biological basis but it is not yet clear whether it results from a chemical imbalance, or an anatomical or physiological brain difference. There is, however, compelling evidence of a strong genetic component.

It is important to stress that there is no research evidence to indicate that autism is in any way linked to inappropriate or inadequate parenting.

There is also no substantive evidence that environmental factors, such as fetal development in the womb, difficulties at birth, childhood diet, immunisation, infantile injury and pollution, are primary factors in the cause of autism.

However, almost all of these factors have been suggested as possible causes and each has periodically attracted huge media attention, but with very little research evidence to back up the claims.

Incidence

Autism is present in all social classes, races and cultures. Although it is possible to diagnose autism by about the age of 18 months, in practice the diagnosis is rarely made until after 24 months and the average age of diagnosis is 5 years.

The actual incidence of autism is hotly debated. This is mainly because some surveys attempt to identify only cases of classic (severe) autism and consequently come up with relatively low estimates. Other surveys have used less strict criteria and include children who show some of the signs of autism – for example, including children with Asperger’s syndrome – and so the numbers of children said to be autistic will be higher.

The Medical Research Council published a review of autism in children aged up to eight years in the UK. The report found that approximately:

• 1 to 3 children per 1,000 show ‘severe autism’

• 6 children in 1,000 show ‘some signs of autism’

• more boys than girls show autism, in the ratio of approximately 4 to 1.

On the basis of the above findings it can be expected that most mainstream infant and junior schools in the UK will have one or more pupils with some degree of autism.

In terms of whether autism is occurring more frequently nowadays, it is difficult to be sure for two main reasons:

1 Over the last 10 years autism has become better known than in the previous 50 years. Parents, medical professionals and teachers are now far more aware of autism and so much more likely to suspect or diagnose it. This has probably contributed, over the last two decades, to the steady increase in the number of children diagnosed as showing autism. However, this does not mean there has been a real increase in autism; it may just be more frequently diagnosed.

2 Symptoms of autism are often ‘fuzzy’. For example, the judgement of one clinician varies from another, so a symptom such as ‘lack of eye contact’ may be attributed to autism or to something else, such as ‘extreme shyness’. The same applies to many of the other symptoms of autism – for example, ‘prefers to play alone’, ‘does not engage in make believe play’. There is no exact point at which such symptoms move from the low end of the average range of personality characteristics to clinical dysfunction.

Long-term consequences

There is general consensus that autism is a life-long condition and, to date, there is no credible research evidence that autism can be cured. Long-term studies indicate that those diagnosed with autism will continue to experience the features associated with it throughout their lives.

However, there is good evidence to indicate that the symptoms can be lessened, in the sense that the child with autism and the family can be helped to cope.

Some children with autism (particularly those diagnosed as having Asperger’s syndrome) may go on to live independent adult lives and may themselves have partners and their own children. Others may live semi-independently, with support from their families and Social Services. A minority will live in specialist accommodation for those with autistic spectrum disorders.

What does it feel like to be a child with autism?

In cases of severe or classic autism, it is not possible for such a child (or adult) to explain how he feels so we can’t know what it is like for him.

In their own world

Many professionals think that these individuals see and experience the world in such a unique way that it is incomprehensible to the non-autistic person.

According to this view, children who are autistic should be cared for rather than educated. This means that, if a child with autism seems happy in his world, it would be unethical to force him to accept the non-autistic view of the world as in some way correct and better.

Unhappy

There is a wealth of anecdotal or autobiographical accounts of what it feels like to be ‘autistic’ from those able to communicate – mainly those who have Asperger’s syndrome. These accounts generally catalogue unhappy childhoods full of misunderstandings caused largely by their persistent difficulties with social communication.

It helps to find a niche

Those who have the condition and who claim to have overcome their unhappiness have generally successfully channelled their obsessive behaviour into some form of career. For example, one famous modern artist, Lucien Freud, was recently diagnosed as having Asperger’s syndrome. He acknowledges that, as an obsessive painter who rarely engages in any other activity, he is highly successful.

Some very famous scientists may also have shown signs of relatively mild autism or Asperger’s syndrome – for example, Isaac Newton, Albert Einstein and Marie Curie. The painter J.M.W. Turner is now thought to have shown signs of Asperger’s syndrome as did the composer Bela Bartok and the philosopher Ludwig Wittgenstein. All these individuals experienced difficulties in socialising with others and had obsessional interests.

Strengths

It is worth noting that children with mild autism and/or Asperger’s syndrome often have particular strengths in terms of their ability to:

• learn by rote

• develop a very wide vocabulary

• focus extensively (and sometimes exclusively) on a particular hobby or interest which is often more technical or scientifically based than the hobbies of his peer group.

It is sometimes whimsically noted that many of our universities are filled with academics who display mild autistic traits in terms of their ‘obsessional’ interest in a specific subject area!

What is it like for parents?

No discussion of autism would be complete without mentioning the feelings of parents who are charged with the responsibility of raising a child with autism. This is a particularly difficult task, especially if the child appears to behave in ways indicating that he is unaware of the care that the parent is persistently offering. Living with a child with autism is not easy.

KEY POINTS

n  The exact causes of autism are unknown but children are born with autism; it is not caused by poor parenting

n  It is helpful to distinguish between at least two types of autistic spectrum disorder: classic autism and Asperger’s syndrome

n  The child with ‘classic’ autism displays all three of the major signs of autism and has difficulties with language and communication, social relationships and imaginative play, and often has obsessive interests and/or indulges in repetitive behaviours

n  The child with Asperger’s syndrome may have difficulties in the social aspects of language such as appreciation of humour, and tends to use rather more formal or pedantic speech than other children of his own age

n  These difficulties pervade every aspect of the child’s everyday life