Understanding Autism

A slightly edited version of this article first appeared in ‘The Teacher,’ journal of the National Union of Teachers. December 2000

20 years ago I was teaching a class to estimate length to the nearest centimetre and measure to check their answers. Jake was nearly in tears because all his answers were wrong … by one or two millimetres! Later, in a spelling lesson, I thought I would liven it up with some ‘naughty’ words that broke all the phonic rules. Jake was inconsolable. Words that broke the rules? How could that be?

I moved on to teach in a special school and forgot all about Jake. Then, five years ago it was suggested that my ten year old son might have Autism. I knew he was a perfectionist who took things very literally, was obsessed with the rules and prone to temper tantrums. But autism? I had taught children with autism. Many of them could not speak. They flapped and rocked. They showed scant regard for other people. Matthew was too bright, too sociable to be autistic. Or so I thought. I remembered Jake. I started to read. I discovered that these children have always been with us but have only recently been recognised. Now we have a name for their condition: Asperger’s Syndrome.

Once upon a time autism was thought to be very rare, affecting less than 5 in 10,000 people. Those who were diagnosed usually had such severe problems with language and behaviour that they needed specialist care and education. Today the National Autistic Society (NAS) estimates that there are perhaps 500,000 affected by autism in the UK. Included in that figure are over 100,000 children, most of whom lie within the normal range of abilities and attend regular classes in mainstream schools.

This broad range of people with autism is best thought of as a spectrum. Classical Autism, sometimes referred to as Kanner’s Autism after the psychiatrist who first described it in 1943 is at one end of the spectrum. At the other end we have Asperger’s Syndrome. Hans Asperger was a paediatrician who wrote about autism. But his work did not achieve international recognition until after his death in 1980. Children with Asperger’s Syndrome are usually quite able and articulate. But, like all children on the autistic spectrum they share the triad of impairments.

1. Impairment in the social uses of language.
Children with Asperger’s Syndrome struggle with the everyday uses of language. Their tendency to take things literally leads them to misunderstand jokes and slang. They can be very precise to the point of pedantry when answering questions in the classroom but struggle to hold a conversation. As one young man aptly described it, “I learned to speak before I learned to communicate.”
2. Impairment in Social Understanding
The child with classical autism does not understand social interaction and often appears aloof and withdrawn. The child with Asperger’s Syndrome tries to understand and is often very outward going and social in intent. But their social naiveté leads to all sorts of misunderstandings and they can make themselves very unpopular without understanding why.
3. Impairment of Imagination
We all try to make sense of our world and impose cognitive structure. This drive to create coherence often involves a leap of the imagination that is difficult for children with autism. They struggle to predict what might happen next or cope with novel situations on the basis of past experience. Instead they rely on routines which may become elevated to the status of rituals that have to be followed down to the smallest detail. Overwhelmed by the extent of human knowledge children with Asperger’s Syndrome often concentrate on a special interest which can dominate their lives to the exclusion of other activities.

THE PROBLEM WITH SCHOOLS
Our education system is not geared to meet the needs of children with Asperger’s Syndrome. It is a neurological disorder and not a temporary psychological disturbance. People with Asperger’s Syndrome have brains that are differently wired. Experiments have shown that they consistently use logic centres in the brain to work out daily life problems that we cope with automatically using our social instinct. They may become so good at using intelligence to compensate for their lack of social instinct that we may not notice. But life will always be a balancing act for them, requiring immense concentration. It can be like permanently living on the edge of a nervous breakdown and the smallest thing can tip them over the edge and lead to rage or uncontrollable panic attacks.

You cannot use the remedial model to fix autism and then take the support away any more than you can give a pupil glasses then take them off him because he can see now. You have to accommodate their autism if these children are to experience real inclusion. This is easier said than done. The culture of league tables, naming and shaming, payment by results all militate against creating an autism friendly culture. We have a Secretary of State who says he is in favour of inclusion. But inclusion rapidly turns to exclusion if you insist on fitting square pegs into round holes instead of shaping the provision to fit the needs of the pupils.

That is why so many parents of children with Asperger’s Syndrome now choose to home educate. Even when they have favourable experiences in primary schools the transition to secondary education, coinciding as it does with the trauma of adolescence, proves too much for many children. My own son became school phobic and only managed three terms in his first three years at secondary school.

WHAT ARE THE PRACTICAL IMPLICATIONS?
Teachers are under enough pressure already and I do not want to add to the burden. But there are a few things we can all do that will make life easier for our autistic pupils and ourselves.

1 ) Remember that able students with autism still need a lot of help and support in mainstream schools. The effects of their autism may be subtle but they are still far reaching. My own son found all tests and exams traumatic. We told him not to worry and just to try his best. To Matthew ‘best’ meant 100%. In trying to help we had only made things worse. People with Asperger’s Syndrome often experience problems with understanding verbal instructions. Repeating yourself rarely helps. it only adds to the sensory overload and confusion they feel. Sending home written briefs for homework and project assignments would do much to ease these problems.

2 ) The biggest single problem at school reported by people with Asperger’s Syndrome is bullying and teasing. They may not even cope with normal peer group interactions without support. Traditionally, learning support has been placed in the classroom but these children are most vulnerable in the corridors, the canteen and the playground. My own son had to suffer whispered taunts like ‘psycho,’ and ‘schiz.’ He would be jostled or patted on the head. Girls would flirt with him. If he responded he was cruelly rebuffed. If he ignored them he became ‘gay boy.’

This is an equal opportunities issue. Children with Asperger’s Syndrome cannot hide their disability. Nor should they have to. A pupil in a wheelchair or with a white stick is afforded protection and other pupils are made aware of their rights as a disabled person. All too often the person with Asperger’s Syndrome is expected to adjust their behaviour to pre-empt the bullying. We blame the victim.

3) Another problem is our attitude. We should try and understand the world from the pupil’s point of view. They may come across as being disruptive or lazy or wilful when in fact they are struggling to cope with our failure to understand. Too often the pupil comes to us with a problem and our response amounts to this.

“This is only a problem because you have Asperger’s Syndrome. Try to be less autistic and the problem will go away.”

Because children with Asperger’s Syndrome tend to be logical thinkers it is tempting to try and use logic to argue them out of their autism. I know. I have been there with my son. Believe me. It does not work like that! If it did we would have cured Asperger’s Syndrome by now.

THE FUTURE
So, are there any reasons to be cheerful? Well, parents of children with Asperger’s Syndrome know our stuff and we want to help. Sometimes we are dismissed as being fussy or over protective. One reason I wrote my book was so that professionals would listen to me. It worked! I wish they had listened three years ago when Matthew was house bound by fear. Childhood should not be a time of fear. But children with Asperger’s Syndrome have a lot to be afraid of.

• Fear of failure
• Fear of appearing stupid
• Fear of criticism
• Fear of bullying

And all the time there is the pressure to conform from well meaning people who think they know best. But learning to live with autism is a two way street. We have a lot to learn from people with Asperger Syndrome. As Matthew once said,

“My teachers think they know more about autism than me because they have been on a course. But I have been autistic all my life!”