What is autism?

 

A summary of the current thinking and issues associated with

Autism Spectrum Disorders for teachers

By Dr Sian Hughes Eastern Health CAMHS

 

We now see autism as a spectrum disorder - it varies from the classic autistic child whom we would all recognise as very disabled to the more subtle cases whom we would not call autistic but who are close to the boundary between normal and autism.  In between there is range of presentations, which depend on the severity of the autism symptoms and the individual's intelligence.

 

The person with an autism spectrum disorder may be classically autistic, high functioning autistic or have Aspergers syndrome.  When they do not have all the features of an autism spectrum disorder but have some symptoms they are said to have a Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS).  The table of autism types gives more information on these categories of autism.

 

Most of us are familiar with the classic autistic child.  There are individual accounts in history, of children, who were probably autistic - the " Wild boy of Averyon " was written in 1801 and describes a classically autistic child.  The first person to connect them together was Leo Kanner in 1943 - a psychiatrist from Vienna who had emigrated to the USA - he called the condition early infantile autism

 

He described children with no awareness of other people, inability to play normally with toys, no language or a kind of language which was not for communication, poor non verbal skills (no use of eye contact or pointing), an obsession with keeping everything the same, odd movements such as arm flapping odd responses to sensory stimuli (staring at fans, smelling everything).

 

At the same time fellow country man Hans Asperger still in Vienna was working with a group of children who also had poor social communication but were odd rather than aloof.  They lacked imagination in their play, they could talk well but lacked an ability to converse preferring a monologue, they had poor facial expression and odd eye contact, they were less insistent on routines but had very narrow interests, they were often ungainly and also showed odd sensory responses.  Intelligence was usually good and in some cases exceptional.

 

They were describing children at opposites end of the same spectrum but for the next 40 years everyone focused on Kanner's description of autism. 

 

In 1981 Uta Frith translated Asperger's work into English and with Lorna Wing (an English psychologist with a daughter who is classically autistic) the term Asperger's syndrome came into being.  It took about 10 years for it to catch on - this idea of high functioning people with autism but it has now caught on and by the late 90s the diagnoses of high functioning autism were soaring.

 


People were looking for explanations - vaccination, mercury, gluten and casein in the diet.  There have been plenty of theories but there is no scientific evidence for any of these and really this increase is simply because we are recognising the condition in children who were previously seen as a bit odd, nerdy or maybe just shy.  Schools are being informed and parents are seeing newspaper articles and TV programs about autism and seeking the diagnosis.

In the 1970 1 in 2500 people were thought to be autistic - that is classical autism.  Recent studies in Sydney are putting it at 1 in 200 and then if we look at all the variants of autism (Asperger's; PDD NOS) it could be as high as 1 in a 100.

 

Autism merges with normality at one end - Lorna Wing says if you take a man and boil away some of the water you can get Aspergers! It is more common in boys than girls (4 boys to every 1 girl) and females do tend to be more verbal and have better social skills than males.

 

Autism is a developmental disorder that begins before birth - it has a strong genetic component and no biological marker so like ADHD it must be diagnosed on the basis of observed and described behaviours - there are no tests you can do - and people have different standards so one may say yes ASD and other disagree  - the same with ADHD  - which makes it very difficult!!

 

All assessments should include the parent’s history, interaction with the child, the child's level of intelligence, their language abilities and a report from their classroom teacher.

 

THE BASIC CRITERIA FOR THE AUTISM SPECTRUM ARE:

 

Language problems

They are often better at speaking words than understanding words

Social behaviour

They see everything from their point of view and do not understand other people

Obsessions and Routines

They get over involved in order, routines, rituals and special interests

Sensory sensitivity

They may have unusual responses to light, sounds, touch, taste, smell, pain.

Motor clumsiness

They may be uncoordinated, walk on their toes or flap their hands

 

These deficits lead to other difficulties

 

Theory of mind

Inability to realise that other people think and feel differently from you

Imagination

Inability to imagine what will happen next and predict outcomes

Anxiety

The above lead to anxiety in an aware child especially if they have an anxious personality type

LANGUAGE

The classic autistic child has very little language.  They may show marked echolalia (repeat things that you have just said), speak in phrases they have heard eg from TV ads or a favourite videos. Even if they have some language they do not use it to communicate.  They have better expressive language skills than receptive language skills so they can talk but have no idea what you have said to them.

 

Children with Aspergers may have good talking skills with lots of vocabulary and grammar and you may think their language is good BUT they have huge problems with the pragmatics of language (see below).

 

Children with high functioning autism or PDD - NOS do not have good language skills for talking and have greater problems with understanding and communication but are better than the children with classical autism because their intelligence is better.  They do not use the language they do have for effective communication. 

 

Pragmatics- this is the functional use of language in social situations - to have a normal conversation you have to be aware of the other person's state of mind and children with autism miss this completely.  Once the conversation has begun there is no off switch.  The child is oblivious to the listener showing distinct signs of embarrassment or desire to end the interaction.  The child is not listening to or does not know how to incorporate the comments of others into the dialogue. 

 

If asked a question they don't understand they get confused but instead of saying  " I don't know " or " I'm confused " they have a tendency to pause for a long time and may then change topics to one they are familiar with. 

 

The dialogue often turns back to the person's favourite interests because they don't want to look stupid and they have plenty of vocabulary and knowledge to use on their favourite topic.   They have an infuriating habit of interrupting. The skill of interrupting without causing offence or disruption is quite complex.

 

Semantics - Literal interpretation - They do not understand implied meanings of words and get very upset by metaphors.  Tell them to " hop onto the bed " and they start hopping on one foot trying to get onto the bed. They need very clear and concise directions or they will get confused.  Sarcasm and humour based on language is very confusing for them.  They cannot generalise statements from one situation to another.  So " don't hit Tom " means that it is still OK to hit James.

 

Prosody - in conversation we change tone and volume to emphasis or indicate emotion - Asperger children may have a monotonous tone or an odd accent.  The meaning of a sentence can depend on the inflection or emphasis given to one word.

 

Talking aloud Young children give a running commentary on their activities most have stopped this by the time they reach school but the child with autism spectrum disorder may keep going.

 

Chat rooms and email conversations are great for these children.  They usually like computers and on email they have time to think of an answer or seek help before they reply. There is need for eye contactor other non-verbal communication.


SOCIAL BEHAVIOUR

 

With the language problems and the failure to appreciate the feelings and thoughts of others social problems are inevitable.

 

At the extreme end they just have solitary play and no interest in anyone else and if they do let you play then there is no joint attention and they use you as a tool.  At the other end some children with autism can want to be sociable and do initiate interaction but go about it the wrong way.

 

There is a sequence in the development of friendship as children mature they change their opinion as to what constitutes a friend, Children with autism are immature in their approach to friendship - they may say they have friends but on investigation it is no more than a casual acquaintance or wishful thinking.

 

 They may try to copy a popular person and feel confused when they try the same activities and tell the same jokes but are just ridiculed.  They misjudge the mood in a group situation.  If they like someone then they assume that the other person has the same level of commitment. But they also make very loyal friends!!

 

The social codes of conduct are very difficult especially in adolescence because there is totally no logic to them. So children who have coped in a nice small primary can hit the wall when they get to high school.

 

They don’t notice or misinterpret all those non-verbal cues that we send out in our body language.  When they try and socialise they are often rebuffed.  They ruminate on what has happened and because they are more aware they often become depressed and anxious.

 

INTERESTS AND ROUTINES

 

The fascination of a special interest and the imposition of routines that must be completed can have biggest impact on the sanity of the family.  Often routines and rituals are more severe in the higher functioning children. 

 

There is a developmental sequence in the nature of the interests and after collecting objects they move onto a topic such as trains, dinosaurs, computers or statistics. 

 

There are several explanations for children having special interests - a special topic can facilitate conversation and indicate intelligence.  It also provides order and symmetry and a means of relaxation as well as something enjoyable.  By controlling access and using the obsession constructively the child can continue to enjoy their interest and not drive others mad.

 

Routines are similar they make a confusing world predictable and safe.

 

BUT increasingly I am seeing kids with the language and the social problems but not the routines and obsessions they are often very disorganised and messy - more like ADHD but still more odd than typical ADHD. These are the ones that fit into the PDD NOS category - not typical autism but still confused by language and social interactions. 

 

COGNITION

 

This is very important in diagnosis.  If a child has an low IQ <75 then they will probably have poor language and social skills and to be diagnosed as autistic they must have more than this and be odd.  If a child has an IQ of 120 and poor social and language skills then you need to look a bit closer for an autism diagnosis.

 

Profile of abilities on Intelligence tests - there is a distinct profile of abilities on intelligence testing - autistic children are good on tests which require a good vocabulary, factual knowledge, arithmetic and block design, they can give the impression of being very intelligent but they are weak on comprehension and problem solving tasks- so their overall IQ can be good but the profile is remarkably uneven. -

 

MOTOR CLUMSINESS

 

Originally this was an important part of diagnosis - Kanner saw the severe autistic children as having good motor skills and Asperger saw the higher functioning kids as having poor motor skills.  In reality it is very variable and not reliable. Anecdotally I would say most children with autism spectrum problems have poor coordination but some are great.  Most have difficulty with handwriting but some are wonderful artists. 

 

Odd movements such as hand flapping, toe walking, running around in circles are more typical in low functioning children but some children with quite high IQs will flap their hands when they are distressed or walk on their toes around the edges of the playground or rock themselves as they work. 

 

SENSORY SENSITIVITY

 

At least 40% of autistic children have a major problem with integration of sensory information more so those with low IQ but the higher functioning children may do as well.

 

They may have sensitivity in one or more of the following areas:

 

Light  - upset by bright lights; look at fans and tops spinning

Sound - hate loud noises, notice odd noises such as a clock ticking

Touch   - stroke surfaces and very fussy about clothes next to their skin

Taste - fussy eaters may only eat one type of food

Smell  - smell objects and sensitive to strange smells

Hair and teeth - hate brushing hair and teeth and visiting the hairdresser and dentist

Pain - cope with severe pain then get hysterical about a mozzie bite.

 

THEORY OF MIND

 

The theory of mind tries to explain why autistic children have these problems. A core symptom of autism is the failure of the child to show creative play.  Mentally retarded non-autistic children with language and social problems show creative play at their developmental level but young autistic children do not.  This led to the realisation of an important difference between the thinking of autistic children and Alan Leslie in 1987 first proposed the theory of mind.

 

From the age of four children understand that other people have thoughts and feelings this allows them to pretend something that is not really the case eg if Mum is using a banana as a telephone they know that she knows it is not really a telephone and so they can also believe something that to them is not true e.g. " Mum really does like my red dress and I think it is hideous ".  So they can manipulate representations of mental states such as pretence and belief.

 

Autistic children fail to appreciate other people's thoughts and feelings so they have problems with pretence and believing things that are not true.  If this part of the brain is faulty then social imagination and communication skills cannot develop normally.

 

There are stories that provide information about a child's capacity for Theory of Mind e.g. Sally has a basket, Anne has a box, Sally puts a marble into her basket, Sally goes out for a walk, when she is out Anne, naughty Anne! takes the marble from the basket and puts it into her own box. Sally comes back in and wants to play with her marble. Where will Sally think her marble is? Where will she look? - The correct answer is in the basket where she put the marble and where she must believe her marble still is. Autistic kids expect Sally to know that the marble has been transferred even though she was not there at the time.  They could not conceive Sally looking anywhere expect where the marble was because they do not understand belief.  As they get older they learn to give the correct answer but have to think much harder than their peers.

 

A whole series of stories like this have been developed to see if a child is able to understand other peoples thoughts at different developmental levels

 

IMAGINATION

 

It is very hard to function day by day when you cannot imagine what other people are thinking or why they are doing things.  Children with high functioning autism have to think much harder than normal children and this can be exhausting for them.  They may figure out what someone had said or done days after the event.  For more aware people with autism, they realise that they are not good at this type of thinking and find social engagement very stressful. Often they hold it together in a structured classroom and then become more difficult at playtimes or at home when there is less structure

 

Most of us are good at anticipating what might happen in the next half an hour, the next day, even the next month or year.  When things do not go the way we anticipated we are surprised but we usually have the skills to reason our way through it.  Children with autism find it hard to imagine the future; this makes life very uncertain and stressful.

 

ANXIETY

 

People with autism have varying levels of anxiety just as is found in the normal population.  There is a continuum of anxiety and this contributes to the variation we see in the autism spectrum.  For example, it is likely that the " passive " children with autism who have few or no rituals and routines have low anxiety levels, whereas, anxious children with autism usually have a greater number of rituals and routines in place. 

 

We also should remind ourselves that the " autistic " need for order and predictability is also observed in the normal population.  Many people try to control their anxiety by becoming a " bit autistic " eg, they tidy up furiously, insist on plans and routines, avoid social groups, answer in monosyllables.  This creates control over one area of their life when they may be out of control in another area.  Anxiety causes insecurity and by sticking to routine or acting repetitively the person feels more secure.

 

BRIBERY NOT PUNISHMENT

 

Children with autism often don't respond to punishment.  The " naughty " behaviour reflects the child's difficulty in understanding the rules and mores of the social world. To be manipulative you need imagine what another person is thinking, and try to change that to your advantage - so they are not manipulative. They do not tell lies when they are younger but as they are older and have learnt to lie they do not do it well!

 

Often the only way to get a child to learn new, subtle social rules is to reward them.   " Bribery and Corruption " as Tony Attwood calls it.  In a sense you are rewarding them for trying something difficult for them, that is, to behave in a way that does not come naturally for them. 

 

THE AUTISM SPECTRUM

 

There are different levels of severity in these behaviours so there is huge individual variation. Some do not meet criteria for a diagnosis of autism and have incomplete manifestations - again those people with marked social and communication deficits but without repetitive behaviours - these deficits can cause life long impairments even though they do not meet the criteria for autism and are helped by the same services and follow the same course as those with autism. 

 

The term PDD NOS was adopted to provide a formal diagnosis for those who shared deficits similar to autism but did not meet the full criteria.  The intention was to emphasis the pervasiveness of impairments in many aspects of life while still differentiating autism from general cognitive disabilities like mental retardation.  I prefer to say that they are on the autism spectrum or have atypical autism than PDD NOS as it is such a mouthful and so meaningless for most people. The question is when does it merge with a normal personality difference and when should it be a diagnosis?

 

As well as having variation in the severity of the autistic symptoms much of how a child presents depends on other issues especially their IQ level, anxiety level, family and school support, other conditions such as ADHD with autism etc etc.

 

The straightforward high functioning child with Aspergers or HFA can be a delight to teach but you have to modify your thinking because they cannot - the ones that are difficult - who totally refuse to cooperate despite setting up wonderful programs are those who have additional problems eg oppositional defiant disorder, severe anxiety because of past events etc. Older children who have been diagnosed late and have not been properly supported can have enormous difficulties trusting the system.  This can make their behaviour even more oppositional. Early intervention is vital.