Asperger’s Syndrome – Understanding and Educating
by:(name withheld by request)
Asperger’s Syndrome so named after the Austrian researcher Hans Asperger, who first described this condition in a paper he wrote, publishing it in German in Vienna in 1944. The paper and others he wrote were not accessible in English until Uta Frith had the original paper translated and published in 1988.
Lorna Wing 1981 first used the term Asperger Syndrome and in1991 realised that Asperger’s Syndrome was part of a spectrum nowadays referred to as the Autism Spectrum Disorders (ASD). ASD, includes; Damp (Gilberg 1991), Aspergers Syndrome (Asperger 1944), and Autism (Kanner 1943 Blueler 1911).
Today we will briefly consider:
1.Asperger’s syndrome what it actually is,
2.How to recognise the condition, and deal with it
3.Positive aspects of Asperger’s Syndrome
4.Advantages of home schooling a child with Asperger’s Syndrome
5.Frequently asked questions
6.Adults living with AS
Web sites and Bookmarks about Aspergers – by Author
Aspergers Syndrome is experienced three different ways by those who are on the spectrum, those who experience someone who is on the AS spectrum, and those are cognitive theorists who deal with AS and people associated with them. A number of aspects have been selected and expanded to allow the reader a fuller understanding of those aspects that their individual or themselves manifest. The topics selected below are by no means exhaustive and others exist.
Social Relationship Problems
From my perspective, many AS people try hard to be social when we become aware of that need but often much effort results in frustration and alienation. Essentially we are not programmed to be social and each type of interaction must be learned by rote and cannot be transacted by instinct, as everyone else is able to.
At other times we have no idea of how to respond even being totally unaware that we should. Some friends tried hard to be friends I was totally unaware of their efforts, failing to apprehend nonverbal signals. At other times facial expressions or etiquette are at best a totally foreign language no matter who is enacting the dialog. Some of us dislike social contact due to exposure anxiety not wanting to be different but not knowing what to do. Even after fifty years practise social relationships are very difficult with non-AS people.
The development of peer relations contiguous with age development appears out of sync where a lack of reciprocity results in a lack of sharing, bringing or reciprocation. Some AS people will however bond more successfully with adults than peers, similarly they may also develop friendships with children who are much younger than themselves, yet another group may try to connect with their cohort particularly at school often being me with a lack of success alienation teasing and so on, a more noticeable group has no contact with anyone and isolates to cope. Occasionally the later group has people in it that are prone to running off not aware of danger, fear, strangers, or different surroundings.
A lack of social or emotional reciprocity often characterises people with AS and may cause nonspectrum people to think the AS person is actively snubbing them rather it often is that the AS person is unable to respond as they either don’t know how to, are not aware that this is the time to say something etc, or choses not to as they see no need. Many AS find it hard to locate a gap in conversation and then be able to immediately respond.
AS people often experience great bother with communication of any sort. Sometimes some AS people are unable to speak or do so much later, than nonspectrum people, i.e. after 3-5years of age. Problems are many fold either it is difficult to communicate in linear thought and or we fail to interpret nonverbal signals, or that what we communicates is out of kilter with the audience expectations. Also we are often extremely literal in our interpretation of others conversations, on many occasions we can become confused when ambiguous communication appears. Thus we may check that cats and dogs are raining down and announce they are not here yet, or understand there are two suns when someone talked about two sons.
Socially imaginative Play Deficits
Many AS children are unable to play pretend games often indulging in repetitive behaviours, seriation, tearing up paper, rocking, ant tracking, and other actions. Symmetrical patterns, colour grouping and repetitive activities are nearly always preferred to joining others in their activities. Some AS children may be attracted to wheels and perseverate over activities that involve them, as a child the bike turned upside down was a most excellent toy for as long as I could be allowed to indulge I could ignore all. Preferring to play alone AS children may play parallel to other children or perchance with others try to dominate the activity.
Poor Coordination and Motor Clumsiness.
AS people may have cerebellum developmental delays resulting in poor balance, poor hand to eye coordination, or poor spatial awareness. Some may have motor clumsiness that results in difficulties with sequencing a task correctly, catching a ball, handwriting, cleaning teeth, shoelace tying, and other such like activities. These bothers make the person appear uncoordinated prone to fall and stand out when the person tries to run with other people, simple ball handling skills appear almost impossible. Some of these bothers if untreated will remain for life, others learned slowly later. Poor coordination may result in avoidance of some or all activities by the AS person as they aim for perfection not pleasure when completing some sports tasks.
As with other AS bothers this problem area tends to manifest as a spectrum ranging from no sensitivity to extreme sensitivity. Although some AS have under sensitised systems the majority are more highly sensitised to their environment than nonspectrum people. The most noticeable response to a stimulus would be light or sound. Briefly we have included aspects of the stimulus that causes bother
Too much light, the wrong sort of light i.e. blue light, movement, synesthesia where sound appears in the brain as light
Too much sound, too much of one frequency of sound, and or the brain focussing on one sound and ignoring all other sounds i.e. a computer fan, cause AS people great discomfort and distraction. Unable to filter extraneous sounds a melange of sound overloads the AS who often has bother discerning which they should be hearing or ignoring individual peaks of sensitivity aggravate an already troublesome condition
Often referred to as tactile sensitivity, Asperger people are highly sensitive to certain fabrics; sometimes these cannot be tolerated i.e. wool, wearing shoes, hats sunscreen application and the like. Seams labels joins in the fabrics are also sources of often-intense irritation. Others cannot tolerate; hugs, light caress like touch that is perceived as painful, certain types of food in the mouth or even full stomachs
Some AS people are able to detect certain chemicals or tastes to micro molar amounts whereas others totally lack taste discernment. When medication, for the AS person, is administered via drink or food the AS person is often able to detect the presence of medication via taste even in very small doses. Other people have extreme bother in consuming certain types of food for the taste they perceive overpowers them greatly to cope they often limit themselves to what they eat opting for bland or foods of a certain taste only at the expense of everything else.
As with food smells and fragrances affect different AS in different ways. Some perfumes over power others do not, the response to the overpowering may be avoidance, anger, windup due to overload, or inability to cooperate with the person who has the perfume, ditto other odours and smells but a number of AS people prefer some odours and try to smell them more regularly.
Smell may trigger outbursts when the fragrance smell whatever is linked to an event thus when experience at a latter date the same feelings or replay of the event takes place.
Attwood, Pers. com. 1998 has stated if an AS person has sensitivities to light sound etc then the AS person may have an ability to detect things in the spiritual realm, to certain areas or sites, people’s houses, even certain people themselves. Instinctively able to sum up a person results in their perception taking place before the other person has even spoken to them.
Right and wrong
Many AS people seem pre-programmed to detect right and wrong and often will bluntly announce what is wrong. Other times will note others short comings but not their own.
Some AS people are unable to detect pain, others do but have a high pain threshold. On the other hand some are more sensitised and respond to only very small pain incidents out of proportion to the incident, still others may respond to minor pain incidents but fail to do so in more severe events.
Need For Routine
As a train or tram needs tracks so to do ASD people need routine and predictability. Change can cause ASD to become stressed and too much change can lead to meltdowns. Changes like a different teacher at school, a new routine, doing things in a different order are some of the more obvious more subtle might include putting pants on before the shirt, going to the toilet at someone else’s place, changing a bedroom curtain can contribute to stress.
ASD people often develop unusual interests some of whom will be suitable for employment; an interest in busses allowed my brother a bus-driving career. Other interests may not be so useful and when one inappropriate interest is extinguished another usually takes its place.
Encouragement should be given early to foster suitable special interests so that the ASD person has something to be interested in which would allow teachers to utilise in an educational setting as well as preparing the person for employment. It may be useful to encourage the ASD persons memory so that what has been loaded is useful but prepares the ASD on learning more rather than letting the world drift by.
A number of AS people show special abilities these would include, painting /drawing, logic /computer skills, able to load the brain with facts, detail specific, early reader, hyperlexia, mathematical abilities, engineering tendencies, logic and argument. While these in themselves are useful when nurtured the individual can achieve ha high level of competency in a chosen field, this could be in sciences eg chemistry, physics, geology or IT where computer work requires ability and learning rather than training alone. Others may excel in music performance, composition or teaching. A number of gifted people of high achievement are / were AS this would include Grandin, Einstein, Wittgenstein, Gates, Mozart and Bella Bartok to list but a few. By supporting and promoting the AS person’s skills early in life greater achievement is possible in that person’s life.
AS people are often unable to protect themselves at school or in various social settings they find themselves in. In later life they are may be regarded as eccentric odd or different, some unable to work as supervisors but capable of high work out put and ethics when in suitable employment. Some ASA people are extremely trusting others suspicious of all.
Detail vs the Big Picture
As AS people are often skilled at noticing details problems invariably arise. The importance of the detail prevents the AS person from understanding the bigger picture as the context of that detail is only a detail. The context often requires social understanding to be able to process the whole picture this would require theory of mind, flexibility, where in the whole the detail may fit and its size to the end result.
AS people not able to access their frontal cortex or prefrontal lobe efficiently if at all, they must transact their social transactions from the realm of memory being prevented from accessing instinct or social areas of the brain. Consequently some tasks are difficult; turn taking, hypothetical scenarios, and other’s points of view cause AS people great difficulty, and bother in thought. Thus often the AS person aims for closure unable to realise the real consequences outside the AS mindset or time frame. Some as a result fall foul of the law not apprehending the full ramifications of their actions in the big picture.
Anger and frustration
Anger in AS people needs to be understood as an over stimulation where a little or a lot will cause the same effects, and that many AS people irrespective of age have a one size fits all response. Anger management presents problems for some AS people. Their ability to see things in black and white results in tantrums when they don’t get their exact own way, or per chance they are used to getting their own way and now cannot. Anger expressed may be a childish way to cope the person needing to be trained early on what is socially appropriate.
Still others have an extremely short fuse blow up then wonder what all the fuss is about, conversely sone AS bottle up anger and turn it inward and hit or bite themselves, never revealing once where the bother is. As many AS people are perfectionists it is prudent to train the AS person in how to cope with the mistake without the fuss anger whatever this may take time. The AS person often is expected to grow out of this behaviour but does not as they need to be helped out.
AS people not only experience bother understanding time they often are unable to utilise time effectively. Organisational skills in some AS people are non existent chaos characterises interactions their lives and homes. Deadlines are ignored, as they may not be understood.
As the twenty-first century proceeds many interactions are becoming more socially oriented the employment available away from town decreases and many AS people find they are forced to be schooled in large groups, seek employment as part of the team and the like. Being required to function in the intensely social realm contributes to the alienation AS feel. When the alienation commences differs person-to-person the higher functioning people probably feel this earlier than others. Not being able to relate on the wave length, not aware of social issues, correct ways of responding, preferring to delve deeply into a subject, not being admitted to social groups, ostracism, bullying, teasing have all contributed to we the AS people understanding that we are from a different planet, cultural aliens at best shunned and actively excluded at the worst. To sum; the advise given by an AS person don’t worry about them worry about yourself.
Some AS people have learned to act to use social coping strategies to mask their AS mannerisms thus AS is concealed, others become reclusive, however no one AS person will ever be exactly like another each responding differently to another.
As AS people lack social capacity or awareness even, they find that despite sincere efforts and hard work they are unable to; connect rationally, understand body language, obtain friendships, employment, trust and or relationships. Many AS can and do work hard to be employed, marry as well as having at least one friend however there are some who find themselves isolated or worse alienated.
Isolation can be due to; exposure anxiety, over stimulation in the environment, teasing, inability to enjoy social experiences like sport, talking about social things or enjoying others company, but mostly its because we are not programmed as nonspectrum people are. The alienation may be due in part to an inability to organise simple everyday experiences, eating, dressing appropriately, catching public transport, waking up in time, many things others take for granted, but we find extremely difficult to enact successfully alone or with other people. The alienation may also be due to criticism and teasing which has lead to a very poor self-image. These above listed points in turn have discouraged the AS to pursue relevant goals. As AS people are dereistic goal centeredness is not what he/she are programmed or interested in, thus the AS finds themselves an island of self marooned in a sea of sociality.
When Asperger’s Syndrome is suspected preliminary checks can be made via T Attwood’s Australian checklist, consulting the DSMIV, perusing various checklists and diagnostic tools present on the net. The next step would be to arrange a consultation with a competent child psychologist, paediatrician or child psychiatrist. You will need to consult resources in your area or discuss with a school how to access relevant authorities.
Diagnosis is important for it allows parents teachers, and carers to realise that this individual responds due to different programming of their brain rather than deliberate malice. It is important to realise that extra discipline may not be useful or blaming the parent or event whichever is chosen. ASD often runs in families but can be brought on in other ways, foetal alcohol, mercury damage, vaccinations are possible causes but other factors may also contribute but have not been isolated.
Diagnosis will often reveal if other conditions coexist said to be comorbid these may include; Tourette’s, ADD, ADHD, Fragile X, OCD, epilepsy, semantic pragmatic disorder, hyperlexia, and many other less well known conditions. Coexisting are three other bothers not every AS person will have but when stressed may manifest instead of the AS condition these would be schizophrenia, Anorexia nervosa, and some form of depression. Depression is often an ever-present shadow but under stress becomes pronounced.
How to deal with Aspergers Syndrome
How to deal with Aspergers Syndrome is a book in itself. We have selected a number of strategies to allow choice to ascertain what works with the individual you deal with.
AS people whether autistic or Aspergers need a low energy environment. This means that light, sound, smells, heat, change are all kept low. This allows the AS person to exist in their environment without becoming wound up by it. Another word to use here would be predictable.
Attempts should be made to check if diet is causing bother as many AS people are affected by gluten and casein intolerances predominantly and sea food i.e. prawns, or soy or peanut sensitivities. Various web sites will advise on how to enact the diet Sue Dengates book is particularly useful. Additives, 282 often found in bread, in particular often contribute to anger outbursts. If ADD or ADHD is also present then colourings and additives will need to be investigated very thoroughly.
When one or both parents are compassionate people, that is their motivational gifting is compassion, the AS person who is primarily a perceiver, will always be in a position to manipulate instinctively knowing where the weakness are. The compassionate person seemingly unable or reluctant to deal with the problem lets things slide. Once the AS person establishes a precedent the pattern is set and the AS child can and does become a tyrant expecting to get his or her own way, this can produce life long bother and can be dangerous when puberty manifests. Compassionate people deal in feelings, generally want peace at any price and give in easily, all this the perceiver AS person has worked out and exploits unmercifully. The maxim is always firm but fair for if allowed to continue the person will be very difficult to live with and may not be able to obtain work, as they have not learned to fit in.
From time to time some AS people experience great anxiety and can become very wound up. As a result it takes very little to make them angry and meltdowns can and do occur. It is prudent here to outline the windup cyclicity and what to do. First we need to say events can wind AS up, but the body does as well and this we refer to now.
When the AS person leaves the last day of their windup there passes about 30+ days of windup free time then for five days the person feels wound up. During this time the person experiences their environment more strongly as their body is inversely less able to cope with it. The five days pass 30+ days then comes the next windup and this time it generally more severe. Another 30+ days next windup is moderate: thus the pattern is moderate severe, moderate, severe.
Some variations exist: instead of moderate severe, moderate the AS person may have severe, 70+ days of windup free time then severe where the moderate windup is not experienced, or as some autistic people experience there is bother every seven days 7, 14, 21, 28, 35 and into windup proper.
Contrasting this completely are the lunar affected people who experience bother in their heads usually as extra pressure. To gain relief these people often try to compress their scalps to gain relief. The lunar person will always be affected by a specific phase of the moon, be it new moon or full moon. Occasionally other lunar affected people might cause the AS person to be affected at other times, the rule being if there AS person is affected by new moon then they will always be influenced by a new moon.
As many AS people are very literal sarcasm has little relevance, and may contribute to misunderstandings that they experience.
When the AS person gets angry they either simmer or blow-up immediately, however if your blow-up they will watch your response and model that, this may cause problems as the swear words, mannerisms may be accurately copied. When situations of anger arise and undesirable out bursts are experienced remember the sequence to check for reasons i.e. triggers, then when the AS person is calm demonstrate what the episode looked like, next announce that adult behaviours are like this, model the acceptable behaviour to demonstrate how grownups deal with the bother. When the AS person has a relapse ask are you growing up or down always stressing good adult behaviour is what is expected. One question posed would be would Mr.?? Or Mrs ?? behave like that, similarly say lets go to investigate how many people behave like this, eventually work out that little people do and as the AS person is growing up to behave like adults needs to be learned now so they can train their children in the future. Consult Carol Grey Social Stories for a Social story approach to use a different approach to change attitudes or responses.
One way positive outcomes for people with Asperger’s Syndrome are possible is to obtain early diagnosis. Early diagnosis rules out bad parenting, deliberately wrong teaching strategies and alerts people to the need of different strategies which will help the AS child understand academic, social content of the work that they undertake.
Another positive aspect of Asperger diagnosis is that many AS people have very high personal expectations and standards, some of course don’t, these high standards can be utilised in many areas where trust, ability to work unsupervised, reliability are mandatory. Early on many AS people focus on the task and aim for completion when they understand the topic.
Some AS people have unusual abilities and interests which can become an employment asset, my brother was passionately interested in busses at an extremely young age and ever only played or was a bus today he still drives buses. Other people have become world authorities on various topics, some having vast repositories of knowledge at their disposal.
Some AS people are able to work where others would not in distal locations, or prefer working at night, or at very tedious plain or boring tasks without complaint. More than a few AS people are successfully associated with the law as police, lawyers, army personnel, or night watchmen. These people have an inbuilt right and wrong ability where shades of grey may cloud the issue. One famous example is a whistle blower who recognised crime within the police department and alerted appropriate authorities to the bother.
Some AS people who have learned to cover their ASD ways by acting have made it to holly wood, like Dustin Hoffman. Others with musical ability have become successful musicians and or composers who are able to perform then go back to their own world. Mozart was probably one the most successful musicians of his time and one of the most talented musically.
Some AS people are not academic but work steadily at their allotted tasks loyally and long after the social butterflies have departed still toil at the task. An AS friend never advertised his painting ability he was never short of work as his high standard reputation spread far and wide. Often he worked at night and was not bothered by it.
Some AS people are engineers these people are able to envisage complicated diagrams through to completed working whatever. Attwood many times states that the engineers at university are AS and it was easy to spot the nonspectrum person, as often there were none. Grandin is on record Wellington 1999 stating many people at NASA were AS she could even tell whom by their cars in the parking lot.
In many areas other AS are busy; accountants offices, IT personnel, Artists, Carers, Teachers even and in Physics departments, Attwood understands some AS people seek out universities as sanctuaries that would include the libraries also.
Most AS people shun sport absolutely yet one AS person was in demand for his ability to score cricket games. Sports trivia would also be the domain of the AS person as would any other specialised knowledge area.
There are a number of parents and some grand parents who have realised their AS child needs to be home schooled. Some people are scared that their AS child may miss important aspects of their education when commencing home schooling not aware that home schooling advantages outweigh supposed disadvantages.
Briefly advantages would be;
1.Low energy environment exists at home, where stress is at a minimum ensures the AS person is more able to work to potential. Stress can and does prevent many AS reaching their full potential. Stress can be generated by: travelling on public transport, bullying, environmental overload factors; of too much light or sound or smell or too many people or a combination of some or all of these factors, frequent change, exposure anxiety, personality clashes, ignorance of AS needs, windups, travel on either private or public transport, being out of sync with the cohort, obsessions, being overwhelmed by too much to take in, tiredness, heat, and disease.
2.The Jeckle and Hyde behaviour that some AS people exhibit in response to an extreme stress load at school does not generally exist in home schooling situations. This allows AS people to become less tired, defensive, or antisocial as trust and peace replace overload, fear, or disconnectedness AS people are subjected to in a system hostile to AS requirements.
3.The AS person can work at their level of maturity, comprehension and or understanding. As outlined earlier AS people experience about a five year lag in these areas when compared to their own contemporaries. As a result many AS reject their contemporaries to associating preferentially with older and or younger people.
4.A one to one relationship established in home schooling enables the AS person to have routine, predictability, support as well as a non-judgemental parental input when problems are experienced in set work or work load. Parents are able to contribute more time to help the AS problem solve, understand the concepts covered, where the parent is able to realise when the AS is experiencing bother as they understand nonverbal as well as verbal mannerisms of their own child more efficiently.
5.The one to one relationship ensures the AS child is able to have an undivided attention of the parent who acts as teacher and teacher aide. Having a teacher aide causes some AS stress and anxiety as they are seen to be different and or there may be a clash with the non-AS savvy aide. Home schooling therefore allows the AS person to obtain education with out being limited by anxiety ridicule or difference.
6.Bullying, teasing, disrespect, behaviours all may be experienced at any age in the state system where the AS person learns to copy this behaviour by initially experiencing then displaying learned responses either immediately or later when during puberty growth has taken place the learned behavioural response is displayed often detrimentally. Home schooling removes this deleterious aspect of public education.
7.When windups, down days or sickness affects the AS crisis situations that can and do take place at school are less severe in impact if occurring at all. Time lost can and is made up later when the situation improves.
8.Home schooling allows the parent control over the progress of the child’s development. Some AS people drift in state systems, others due to supposed financial constraints have little or no in put other than the teachers lesson the rest is lost due to inability to start, inability to filter distractions, no incentive to progress, being ignored as the hours are whiled away.
9.As children are internally programmed to function alone. While some may want a friend or want to play sport all to often when able to others reject then when an attempt is made to become involved. The working majority of AS people prefer to be alone and must be alone to function to potential. Autism means self-interest, because we lack social skills, school and social issues are a distraction. Put another way at school there are three issues the academic programme, the social programme and sensory overloading, with home schooling the academic programme predominates, the social issues are in house and sensory issues are mild instead of severe.
10.When asked AS home schooled children prefer the non-contact with school to allow them to reduce the stress load especially when the school pupils are younger. When year eleven and twelve is involved a significant number of AS return to school refreshed as it were the pupils now much more mature and less inclined to harass and more helpful. Some AS will be home schooled to the end of year twelve with out ever wanting to return to school usually because of the high energy environment or teasing, or the lax morality and poor work ethic present in many schools public or private.
Where to go for help
The Internet is a great place to browse and explore for help recourses and practical ideas. Various chat rooms allow parents to realise they are not the only ones suffering bother of this kind.
Some people may contact local support groups and the like to gain information if web work causes angst. Discussion boards and Internet sites allow people to be anonymous and form worldwide links and friendships. These links not only help frazzled parents but also allow AS people to make cyber friendships with other AS people ANI is but one site that can help in this area parental discretion is advised.
Web sites and Bookmarks
The following by no means exhaustive list was prepared by someone else and we acknowledge our gratitude to that nameless person for their due diligence in collating this most extensive and comprehensive resource.
As you surf the web, chat to others more resources in your part of the world will be revealed, perhaps you could organise a recourse in your area.
A considerable number of adults with ASD live productive useful lives contributing much in their field of endeavour. A number of adults have come together to organise their own support groups, web sites, or chat rooms. Others have become married and been able to raise children and survive being AS adults. While many AS people experience some bother in their lives a few have ongoing bother with the social aspects of their lives and need help from time to time. An AS diagnosis even for an adult allows that person to realise its not their fault but and aspect of Asperger’s Syndrome. A diagnosis is not a curse but a description of that type of behaviour and behaviouralresponse.
This article was donated to Roland Munyard at Homeschool.co.uk by (name withheld by request)
Roland Munyard © Copyright 2006