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.

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.

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.

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!”

6 thoughts on “Understanding Autism

  1. Asperger’s is not and will never be the same as Autism. Label it what you want. Most kids have fear of failure, are bullied or teased, don’t like criticism and hate to appear stupid.
    Hey, I’ve had to adapt and change when I could not learn as well as others-but-thank goodness-that was before all this asperger’s paranoia.

  2. Asperger’s IS Autism in pure form, without mental retardation/learning difficulties. Anyone who’s trying to minimise what the Autistic person is going through (i.e. proposed “Asperger’s paranoia”) or calling Asperger’s a MILDER form of Autism is being ignorant or deliberately harmful and even malicious. Why are some people so jealous of our gifts yet scornful of our difficulties? It’s the fear of the “unknown” talking again, isn’t it? The perceived threat on a genetic level. because we meet others like ourselves, get married, have other Autistic children. We’re spreading so maybe one day we won’t be such a minority any more. Why would that be so bad? Can’t the world cope with the truth-speaking (society calls us “rude” but we’re just saying it “how it is”) literal-minded, creative, harmless, naive, drawn to learning and discovering, exact human? If the world wasn’t so obsessed with poking fun at anyone who’s different or troubled and sensationalising the trivial crap yet ignoring the important (but boring to the media) issues, we wouldn’t have Britney Spears shaving off her head and self-medicating to “cope”. If we had more Autistics walking among us, their voices would be listened to instead of being ignored and laughed at for being “different” and the world’s values would change. We’d be accepting of others so that she wouldn’t feel the need to rebel. We’d be all writing songs, poetry, plays, making scientific discoveries because we’d have the time to do all that, because we won’t be killing ourselves to have enough money to buy into all the artificial crap that’s being made irresistible by the commercial advertisers. We’d be putting the knowledge we already have to use to change the way process the natural resources. The life would shoot up in value and the cost of living would be affordable for anyone. Utopia this might be but it’s not impossible.

    I’m not calling for Communism (that was a big Red Lie!) But if we don’t stop and look now, there will be another Atlantis all over again, we will destroy ourselves.

    I’m Autistic (Asperger’s) – not crazy or retarded or less than the “normal”. I’m a valuable human, just like any other human and I demand to be treated as an equal and treated with respect I was brought up to give others. But I do have my many processing difficulties and I don’t believe they warrant for my destruction. I’m a hard worker, I’m more dedicated than anyone I know and I never give up anything. I always complete the project and do things thoroughly. I don’t know how to bitch – I’d rather tell you to your face. But there’s no need to attack me for it. I never lie. I just don’t want to. And no, most kids are NOT bullied or teased or hate to appear stupid or dislike criticism. Most kids will comply with the adults without a slightest opposition – I’ve always insisted that I was treated as an equal and got into trouble for it. “Do as I say – no as I do” is a nasty way of treating children in my opinion. But having been through so much rubbish in life, at least I can empathise with others who are downtrodden, bullied or rejected and I DO CARE! I’m very good at art (I’m told by those who buy it) and I’m proud to be Autistic.

    I say, give us a break!!!! There’s room on this Earth for every kind of human.

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

    Seen as a list like that, it does seem pretty innocuous. Haven’t we all felt that way.

    There’s a difference tho. And I’m finding it difficult to find words which will give meaning to it.

    The difference is the difference! These matters are BIOLOGICAL, not psychological.

    They are made to appear stupid when they are intelligent. Perhaps we subconsciously equate IQ with a certain level of skill at communication. How confusing that makes the world! We’re on a completely different dimension here.

    They are criticised for being who they are, because they are ‘different’. We’ve learned not to slander by race or by gender. We will in time learn not to slander by…neurocality. (Yes, I just made that up).

    There are no easy words to explain the difference. Our lexicon (born out of the development of neurotypical communication and the limits of a Freudian understanding of psychological processes) fails our autistic friends.

  4. I have all but given up on getting people to understand that autism is neurological and not just an “attitude”. I worked with one guy who thought that since I knew what my problems were, I could then solve them and overcome autism. I get infuriated just thinking about all the times when people say that we all have some problem (and your autism is not that big a deal). People evidently suppose that my brain works just like theirs, even if their actions indicate they think I am totally whacked out. And it really burns me up to have people tell me they think I’m so smart, when their actions tell me that this is not really what they’re thinking. Actually, they’re thinking something like “this guy is ‘book smart’ and does not have any common sense and is therefore retarded.” If you have autism, it is best to be alone as much as you possibly can and interact only when you have to.

  5. Dear Sir/madam
    My name is Sara Jane Gorman. I understand where you are coming from because I suffer from autism myself. People tend to read you wrong not like you because you tend to misunderstand them and they can misunderstand you. What you show isn’t you intensionly. I realise now that I have lost a lot of people because of my disability which isn’t their fault or mine. I think more education should be given about disabilities to non disabled people. Disabilties should more education to feel part of society rather than feeling as if they are problems to society.
    For eg my relationship has ended because I have found it hard to show love for him. It proves that no one understand but yourself.
    Yours Faithfully
    Miss Sara Jane Gorman

  6. I’m an Australian lady who has Aspergers syndrome. Because the condition wasn’t well understood and treatment didn’t exist even 26 years ago, I had a horrific childhood and adolescence. The teasing and abuse were indescribable. I’m now 33 and have literally had to pull myself up by the bootstraps to get to where I am now. Few people helped me. I’m going to study psychology with the intent to go into a career where I can help others to handle their problems and can hopefully make a difference. I attend a Clubhouse in my city and this has improved my confidence,vhelped me make many friends and develop compassion for others who have had mental illness and forms of autism. The bravery and spirit of some people in the face of adversity is amazing.

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