By Susan Wight

“If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.”
- Henry David Thoreau

In many ways Asperger Syndrome seems to be the latest fad. ADD and ADHD were the fashionable diagnosis to explain school difficulties five to ten years ago and now Asperger’s Syndrome (or Asperger’s Disorder as it is sometimes known) seems to be in every magazine and newspaper. There has, even in the words of the experts, been ‘an explosion of cases’ of Asperger’s Syndrome in recent years and one can’t help wondering why. Whilst the expert explanation is that this is simply a case of better diagnosis, you could be excused for wondering whether Asperger’s Syndrome really exists.

“Whoops Wrong Planet Syndrome”

The fact is that Asperger’s Syndrome does exist. Psychologists explain that Asperger’s Syndrome is on the Autistic Spectrum and that it used to be termed ‘highfunctioning autism.’ Stephen Shore of Boston University says, “The challenges faced by people with autism and Asperger’s come from the same place. They just express themselves differently. For example, we see significant delays in communication for autism. There is no significant delay in verbal ability for Asperger’s.” They are not as unaware of other people as autism sufferers are but they are baffled by human interactions and frustrated by their own inability to make friends. Their verbal skills may be impressive causing them to sound like “little professors” but they can have difficulty using language in a social context and be inclined to conduct long-winded monologues on a subject dear to them, which could be something as specific as pop-up sprinklers. They want to interact with people but tend to talk at people rather than with them, not seeming to notice the difference between a conversation and a monologue.

They have difficulties with the subtleties of language, sometimes taking what has been said very literally. Caught daydreaming in school, Luke Jackson suddenly heard the teacher boom, “Jackson, would you care to tell us exactly were you are?” “Class E2″, responded Luke politely and was puzzled to have the teacher snarl, “Are you trying to be smart?” Luke’s response of, “Yes, Sir, of course I’m trying to be smart” was perfectly reasonable as he thought that was what school was all about. The teacher of course had quite a different view of the exchange.

Other characteristics include deficiencies with social skills, difficulties with transitions or changes, repetitive motions, obsessive routines, restricted interests, sensory issues, difficulty determining proper body-space boundaries and difficulty reading body language. They show a strong preference for interaction with adults who they find far more interesting and knowledgable. Adults are also generally more tolerant and accommodating of the child’s lack of social awareness.

They don’t pick up the social cues that seem quite obvious to others. My interpretation is that they are not incapable of picking up these cues but just very slow to do so. The world, in a social sense, just goes too fast for them. One kinder child with Aspergers Syndrome, for example, had another child say, Gee, I like your shirt. The child thanked him but two hours later he hit his forehead with his hand as he realised that the speakers facial expression had not matched his comment and reached the conclusion that he had actually been the butt of a joke.

People with Aspergers Syndrome have a need for predictability in their lives. The world seems so chaotic to them and this chaos causes them a great deal of anxiety. Anxiety is, in fact, the number one problem for sufferers, with unpredictable events causing panic attacks. They seek to bring that chaos and anxiety down to a manageable level by bringing order and predictability to their day. This is why they resort to obsessive routines.

Tony Attwood, author of Asperger Syndrome says that there are some indications that Albert Einstein may have had Aspergers Syndrome, along with Vincent Van Gough, the philosopher Ludwig Wittgenstein and the composer Bela Bartok. He concludes, “Thus the thinking is different, potentially highly original, often misunderstood, but is not defective.”

James Webb, however, cautions, “Unfortunately, wellmeaning – but often uninformed – clinicians too often apply the label to anyone who is socially awkward, has difficulties reading interpersonal cues or simply seems aloof in social situations. In actuality, Aspergers Disorder is a significantly impairing condition for those affected by it, and it is not an appropriate label for those who are simply awkward, eccentric, or uncomfortable in social settings. Yet there is a tendency to leap to the diagnosis of Aspergers Disorder for persons who have difficulty reading and responding to social cues.” He recommends that the diagnosis be reserved for those with severe and sustained impairment in social interaction accompanied by the development of restricted, repetitive patterns of behaviour, interests and activities.

Treatment

The autistic spectrum largely remains a mystery. Researchers still don’t know what causes it, nor do they know how best to treat it. There is no drug that treats the core symptoms of Aspergers Syndrome but drugs are frequently prescribed to ease the associated behavioural problems. The Bulletin concludes that “with no known cause and no clear guidance, parents must navigate a maze of costly therapies, most of which have little hard-core science to prove their effectiveness.” These can involve prescribed medications including anticonvulsants, stimulants, antidepressants and anti-psychotic drugs. Natural treatments include occupational therapy, speech therapy, kineseology and high doses of vitamin B6.

Mercury Poisoning?

One theory given little credence by mainstream medicine is that both Autism and Asperger’s Syndrome may be caused by mercury poisoning following the recommended vaccination schedule. The mercury-based preservative, thimerisol, was in many vaccines. Research by the anti-vaccination groups indicated a strong link between thimerisol and the incidence of both Autism and Asperger’s Syndrome. Pro-vaccination groups, however, dismissed such claims. The claims and counter-claims were made more confusing by the vested interests of companies connected with selling vaccines. Stephen Shore said, “Thimerisol is being strongly scrutinised, perhaps in part due to the overlap in symptomology between mercury poisoning and autism being about 80-90%. But we’re not sure.”

Bernard Rimland, founder and director of the Autism society of America was sure. “I’ve been studying this for over 40 years,” he said. “In my opinion there is very little doubt that the increased rate of vaccinations is responsible for the increase in autism.” Not only the number of vaccines but also the amount of mercury increased. In support of his case, Rimland pointed out that mercury is extraordinarily toxic in small amounts, but some people are amazingly susceptible to minute amounts of mercury and that the symptoms of mercury poisoning are amazingly like the symptoms of autism. Boys are four times more susceptible to mercury toxicity than girls. Autism and Aspergers Syndrome are both four times more common in boys as girls.

The link between vaccines, mercury and autism has now been decisively disproven. Thimerosol was withdrawn from all U.S. vaccines in 2002. If it was the cause of autism, there should have been a corresponding decrease in the incidence of autism spectrum disorders since its withdrawal. This has not been the case but anti-vaccination groups continue to claim a link between autism and vaccinations despite growing evidence to the contrary.

Finding the cause of ASD would be a huge breakthrough but, as the evidence for a vaccination link dwindles, it is important to accept the science in order to enable further investigations into the real cause of autism. Vaccinations have been hugely successful in saving lives and in some cases, eradicating disease. Casting doubt on them puts children’s lives at risk especially in poor countries where combined vaccines containing thimerisol are the only vaccines available. Thimersol-free vaccines are more expensive, single-shot vaccines which third-world countries cannot afford to keep stocks of.

More information on the whole vaccination/autism question, including details of the research involved, is available here.

School Problems
The dificulty that Asperger’s children have understanding social cues makes attending school a daily trial. An adult recalled his school experience and described how he videoed the whole school day in his mind and began playing it back after lunch, analysing each person’s expressions and movements and trying to work it all out. At the same time he was trying to record the afternoon’s activities. School was, consequently, exhausting for him. “Every time someone moved I had to think that through,” he said. “People are not automatic for me, they are manual.”

If there have always been undiagnosed Asperger’s sufferers in schools, school is probably more difficult for them now than ever before. The classroom of the 1950s, for example, would have been nowhere near as stressful for a child with Asperger’s Syndrome as today’s classroom. The routine was more predictable which was comforting for them and there was a set of received wisdom to be memorised and regurgitated at will. There was always a ‘right answer’. Asperger’s children, with their excellent memories for rote information, would have thrived academically in such a classroom but many still recall their school experience as something ‘best forgotten’ due to their playground experiences especially bullying.

School today is even worse for people with Asperger’s Syndrome. Modern schooling not only covers the teenage years but intrudes into the home in the form of homework to a far greater extent than ever before. Today’s heavy emphasis on group-work and open-ended questions both leave Asperger’s children bewildered.

Many, in fact, find school so difficult that they refuse to go and their school refusal often arises from their problems in the schoolyard and leads to their diagnosis. Play-times and lunch-times are not relaxing for them. They are dizzied by the rush of movement, noise and activity. They are easy targets for bullies and are socially isolated. They may survive the playground by playing alone, sometimes talking to themselves, or take refuge in the library to read about their special interest.

An additional school problem arises from their asynchronous development. They may be very advanced academically (typically especially in maths) but their social and emotional age will be much younger. This means that a school starter with Asperger’s Syndrome will be ahead of his classmates academically but socially immature by comparison. Dr Richard Eisenmajer, a clinical psychologist specialising in Asperger’s Syndrome, says that when starting high school, such a child would be like a bright nine-year-old and would be overwhelmed by the organisational demands. Whilst the good news is that they are very rule-orientated and, being unphased by peer pressure, are unlikely to smoke, drink or become involved in drugs, the flip side is that their relative youth will mean they just won’t understand some of the situations they are in, why things happen and why people behave the way they do. He points out that this quality of social unawareness will make them vulnerable as they move through the teen years.

Eisenmajer tells the story of a typical Asperger child’s clash with school authority. Sent to the Principal for classroom misdemeanors, he failed to be intimidated by the Principal’s attempt to assert her authority. Instead, the eight-year-old looked the principal in the eye and asked, “Can you hurt me?” “Of course not,” said the principal. “Then what can you do?” asked the child. “I can suspend you or I can expel you.”

“I learn better at home anyway. I’ve got the Internet, my computer and my books… I don’t want to be here.”

Eisenmajer emphasises that the child was not simply being manipulative, he just couldn’t tolerate the classroom situation and expressed honestly his opinion that he would be better off learning at home.

Home Education – Not an Easy Option

So would home education be a good option for sufferers? Some might argue that keeping them out of school will only worsen their condition but the reality is that school is so stressful that it encourages their ‘oddities’ as they attempt to cope with that stress. Many retreat into repetitive behaviours to calm themselves down.

Eisenmajer suggests that a situation with one teacher and five students is enough for sufferers to cope with. One sufferer says, “Just me and Mum, at home, that’s my ideal world.” This indicates that the smaller learning-communities available through home education are very beneficial to these children. Eisenmajer also emphasises that they need ‘no people’ time – something difficult to organise in the hectic school routine and yet readily available to home-learners.

Home education releases ASD kids from the daily social torment of school and allows them to learn in a more relaxed and self-directed way. The social pressures and anxiety that school causes them will be alleviated.

I think, however, that there is an added dimension of difficulty for their parents compared to home educating other children. Life for their parents would be somewhat claustrophobic as their children’s social difficulties require the parents to be the constant intermediary in social situations. The children can also be very argumentative – determined to split hairs over the most insignificant detail. They are unforgiving in their insistence on precision and their parents will bear the brunt of this. They don’t, or more accurately, can’t, accept a parent’s wisdom and their anxieties will not be easily allayed. Tony Attwood says that for parents, “social contact can be reduced due to repeatedly having to explain and apologise for the child’s unusual behaviour. Conversations become pedantic and dominated by the child’s interruptions and questions, and the household becomes regimented so as not to distress the child by too much change.”

As an additional challenge, home education critics will mistakenly point to the child’s social difficulties as proof of how home education is socially damaging. They will fail to accept that this is just the way this child is and that home education is more likely to aid him socially in the long term by lowering his anxiety level and through the acceptance and understanding of those close to him. His parents will need to feel firm in their own faith in home education to be able to weather this kind of (spoken and unspoken) criticism.

In order to balance a decision on whether to home educate or not it is also worth considering that, as parents, you have the best knowledge and understanding of this particular child and his needs. At school-entry age, you will already have spent five years gaining this knowledge and home will encapsulate your child’s most familar environment and routine. School would be a new and highly stressful experience for him and, as you will already be acutely aware, when his stress level increases so does that of the whole family.

If a decision to home educate is made, I would recommend following the child’s passions in order to assist his learning. He will love to learn in this way and, although it may at first seem narrow, he may be led on to other topics through his interest. He may read and write avidly about them (that’s English), happily produce statistics, calculations and spreadsheets about them (that’s maths). You can also encourage him to investigate their history and the geography of where his interest is relevant and so on. And along the way he will learn a lot of other information almost by osmosis and without the stress which would result from some of these topics in a school setting. There are also numerous email groups available for parents of children with Asperger’s Syndrome (including http://groups.yahoo.com/group/HENASD or search Aspergers Syndrome at http://groups.yahoo.com ) which may offer invaluable assistance, some from parents who are home educating.

When speaking of Asperger’s Syndrome, I think it worthwhile remembering that we live in a society which is very keen on labelling, categorising and diagnosing people. I believe there are genuine cases of Asperger’s Syndrome but we should be wary of over-labelling and, when considering any such label one should ask whether it is likely to be helpful to one’s child. My definition of ‘helpful’ is that it will lead to a better understanding and acceptance of one’s child rather than to attempt to force them to ‘fit in.’

In conclusion, we would do well to remember the words of John Holt…

The human mind, after all, is a mystery, and, in large part, will probably always be so. It takes even the most thoughtful, honest, and introspective person many years to learn even a small part of what goes on in his own head. How, then, can we be sure about what goes on in the mind of another? Yet many people talk as if we could measure and list the contents of another person’s mind as easily, accurately, and fully as the contents of a suitcase. This is not to say that we ought not to try to understand more about other people’s minds, and thoughts, but only that we must be very modest and tentative about what we think we have found out.

References:

Attwood, Tony: Asperger’s Syndrome Jessica Kingsley Publishers Ltd, England 2002 Baron-Cohen, Simon: The Essential Difference: Men, Women and the Extreme Male Brain Eisenmajer, Richard: Understanding Asperger’s Syndrome, Talk given in Bendigo, February 2005
Bradley, Seamus: Inside the Geek Syndrome, The Age, May 2 2002
Kalb,Claudia: When Does Autism Start? TheBulletin, March 8 2005
Worthington, Amy: Mercury: Most Toxic Element Unsafe? Informed Choice Magazine, Spring 2004
USATODAY.COM: http://www.usatoday.com/news/health/spotlighthealth/2003-04-15- schneider_x.htm  
Holt, John: How Children Learn, Pitman Books, 1967
Webb, James T et al: Misdiagnosis and Dual Diagnoses of Gifted Children and Adults. ADHD, Bipolar, OCD, Asperger’s, Depression and Other Disorders. Great Potential Press, 2005.

For an insight into the life of someone with Asperger’s Syndrome and the difficulties faced by themselves and their families , I highly recommend Mark Hammond’s The Curious Incident of the Dog in the Night-time and Luke Jackson’s Freaks, Geek’s and Asperger Syndrome: A user guide to Adolescence.

 This article was originally published in Otherways Issue 105, August 2005. The vaccination information has been updated in November 2008