This is a skate across some of the puzzles that arise for many people when trying to understand the common current thinking associated with autism. It is not written with any claim to expertise. It takes the view of the interested bystander. It does not seek to explain everything to do with autism. Nor does it seek to lessen the daily experiences of those living with lives influenced by autism.
It aims to understand how current ways of talking about autism might get in the way of society adapting sufficiently quickly. The aim is to explore rather than pin things down, and to look at things as a set of recurring puzzles. Some of these puzzles stem from there being a variety of descriptions of autism, which lead to a range of understandings and misunderstandings amongst the general population that, in turn, get in the way of society being structured in ways that support people with autism. The article is deliberately rather wordy but, again, that is all part of taking an exploratory approach.
The first part of what follows is an outline drawn from various documents and websites of people and organisations actively involved with autism. The second part lists the many detailed behaviours that organisations and individuals consider as recurringly observable in the range of autistic people. The third part tries to set out some of the difficulties that get in the way of everyday understanding of the issues around autism.
- Overview outline
This thing identified as autism exists as an absolute lived reality in a number of people’s lives. At the same time descriptions and discussions of it rely on fragments of understandings put together in various ways. These understandings have changed over time and may change again in the future.
It is seen as being neurological at root. It is a complex condition that is primarily concerned with the processing of information in the brain. It is better seen as a particular human condition, not as a medical problem or a psychological illness. It is more likely to be connected with the state of a large number of genes, operating in that person’s unique environment, rather than some single ‘switch’ mechanism. It is not specifically brought about by family dynamics, or emotional contexts, or culture. It can be viewed as one example of the many ways in which people can be neurodiverse. Autism is one way in which people think in substantially different ways from the average.
It results in a particular core set of ways in which the brain processes information from self and surroundings. These appear as common observable characteristics, or traits, which – taken together – define a person as being autistic. Whilst these core behaviours are observable in all autistic people, they are individual: a feature of the specific ways each person’s brain neurology develops. They each occur to varying degrees so that each individual can have different intensities across each of the common characteristics.
The sensory processing issues that add up to autism can be summarised in a number of ways. One of the most common (but not necessarily helpful) classifications is in terms of three coexisting sets of impairments. Although some argue that ‘impairment’ is too medical, or too negative, this is a widely accepted approach. These areas of difficulty are in social/emotional relations (difficulties forming friendships, difficulties working cooperatively, difficulties managing unstructured settings etc); use of language and communication in social contexts (difficulties processing and retaining verbal information, misunderstanding the non-literal nature of jokes and sarcasm, misunderstanding body language and gestures); and flexibility of thinking (difficulty coping with changes to routines, difficulties making generalisations). These three are put forward as the things that are necessary and sufficient for a diagnosis of autism. Not only do these three have to exist, they need to occur persistently (over time and across different contexts) and exist all together at the same time. They also need to occur with such strength that they limit everyday functioning.
It has to be remembered that these are distinctions that have been made (largely by neurotypical people) between things that may be far more intertwined than such distinctions might imply. Such categorisations may not be helpful, or may even be misleading.
In the USA a different approach proposes that there are two defining features of autism: (a) Persistent deficits in social communication and interactions in a range of contexts, and (b) restrictive, repetitive patterns of behaviours, interests or activities. These two things, present from the early years of life, affect everyday functioning and are not able to be explained by other disabilities or delays in development.
These kinds of approaches are based on trying to find the minimum description that covers autism as a discrete phenomenon ie the basic conditions that set it apart from everything else. They focus on distilling down to find the basic core.
A different, more exploratory, way into thinking about autism might be to build up from the broader descriptions of what happens to different individuals in everyday situations. For a particular individual this could lead to headlines such as:
- Attempts to minimise the volume of new/unknown information inputs
- Senses being overwhelmed when too much is going on, too quickly or too suddenly
- Struggles to express thoughts and feelings
- Experiences strong reactions because of a lack of awareness of what others may be feeling
There are ongoing debates about the kinds of statements that best answer the question ‘What is autism?’
Various theories have been put forward as lines of understanding. Some have been abandoned (eg that autism is a result of the emotional state of the mother), The two main attempts to explain autism are the psychological and the physiological. Some versions of the psychological explanations – eg that autistic children fail to adequately develop a theory of how other people’s minds work – may be descriptive rather than explanatory, falling back on a need for physiological accounts of what goes on in the human brain. This can be in terms of the structure/architecture of the brain, or in terms of interconnective processes within the brain’s neuro-networks.
Some other things frequently coexist with autism. Some prefer to use the term ‘co-morbidities’ (itself far too morbid a phrase). This is a pathological or medical approach and other terms may be better. Such cross-cutting characteristics may be concerned with learning abilities, ranging from strong learning difficulties to high levels of intellectual performance; or concerned with levels of clumsiness/dexterity – recognising that each of these labelling terms comes with its own set of understandings and misunderstandings.
In whatever way the main features get described, these are not the full totality of each person. The cluster of neurological features, which taken together are seen as defining autism, overlap with a range of other features (with each of these other clusterings having its own degrees of intensity); all within a context where other things, eg gender, may also potentially have some shaping effect. An autistic person is first and foremost a unique individual person.
- How the defining features of autism can show as a range of behaviours
It is possible to accumulate the many, many fragments of behaviour that autism organisations and websites list as being potential features of autism. The sheer extensiveness of this list of, sometimes contradictory, behaviours demonstrates why autism remains something of a mystery to the general population (although it is far less ambiguous to those who themselves, or their relatives, are determined as showing autistic behaviours). What follows is a long-listing of these many and varied observable features that frequently get linked to indicators of autistic behaviour. It is intended as more of a thinking tool around how things may be, rather than a definitive statement of the way things always necessarily are. It is the opposite of some assessment list of minimum requirements. It is a way of opening things up, to explore possibilities rather than to pinpoint precision.
In the listings below, the wordings are loose rather than definitive; some things could be put under various headings; some details can be common to more than one characteristic; other wordings could have been chosen; and so on. The clustering of features under subheadings is not a fixed thing; other combinations are possible.
Many of the details are phrased in negative-sounding terms. This partly reflects the way ‘normality’/’average’ is seen re children’s development; and partly reflects the wording of many of the documents looked at (which in turn reflect ideas around assessment and identification). As a society we seem more driven by establishing what people are not able to do rather than understanding what they are like.
It is certainly not intended to be read that every autistic person will display all of the potential characteristics listed as detail. Each person is different in many ways. Within each of the broad headline features one person might exhibit a particular set of behaviours whereas another person might exhibit some details but not others. Most obviously, each bit of detail (where present at all) can exist to varying degrees of prominence, which can vary over time or in different settings. Whatever the behaviours of individuals, they are more likely to be at the extreme ends of the range. Some of the particular details are contradictory so that a person can appear to be both one thing and its opposite within the fixed overall framework. People are complex beings.
Some of these possible behaviours include:
Likes repetition, pattern and known detail. Dislikes flexibilities:
- Paces in circles; jumps up and down
- Wears the same clothes until almost threadbare, then replaces with something almost identical
- Passes the time through constant little rituals
- Likes repeated actions and sayings
- Panics if small things are out of position
- Likes routines that repeat the same known sequences, rather than being in unstructured settings
- Needs strong preparations for doing things
- Able to hold large or complex known patterns in head
- Takes the same routes to places; doing things in the same order
- Feels the need to fix or rearrange things or put them back where they belong
- Activity patterns or play patterns are often repetitive
- Can be unusually or compulsively attached to insignificant objects
- Experiences difficulties in making the change from one activity to another
- Has expectations that others will comply with what is in own head
Discomfort around others; may prefer to be off to one side of activities; self-absorbed:
- May prefer to have only a few friends, or a very small number of strong friends
- May not respond when others want to interact with them
- May respond to social interactions but rarely initiate these
- Does not share own observations or experiences with others
- Does not respond much to peer pressure
- Rehearses roles from books/films etc and uses these to work out ways of behaving
- Prefers to have some solitary times
- Shows minimal acknowledgement of others
- Has little interest in getting other people’s attentions, except for particular things
- Withdraws into private world
- Can run off if things feel too disturbing
- Resists choices/options if others not acting as expected
- Can appear difficult in a group/in class
- Finds cooperation difficult
- Confused by laughter or facial expressions of others
- Able to amuse self; happy with own company
- Finds others annoying, intrusive, illogical, threatening – which makes cooperative working difficult
- When entering a place, will tend to head for an object rather than focus on a person
- Little idea of how others expect them to behave in public
Issues with speed of verbal processing, language levels, pronunciations:
- Repeats what is said, rather than holding own conversation
- Doesn’t initiate conversation; chooses not to speak (or is unable to speak)
- Replies with minimal answers (yes/no)
- Talks in lists of nouns
- Has difficulties with sequencing (letters into words; words into phrases)
- Can have difficulties memorising texts/stories
- Can have extensive vocabulary yet have intellectual difficulties in constructing longer sentences or texts
- Prefers logical sequences; may not appreciate ambiguous phrases, idioms, metaphors, extended imagery etc
- Can over-focus on accuracy, use of words
- Difficulty comprehending words relating to positions or sequences or directions
- Can have difficulties with orientation of written letters
- May have motor difficulties in holding pencil/pens
- Can have fascination with numbers, letters, stories
- Can use over-flowery, artificial-sounding language constructions
- Can focus on unusual imagery
- May focus on the accuracy, use of words
- Good receptive language skills, but weak productive/expressive language
- Good expressive skills but difficulty in processing things said
- Speaks unusually loudly or unusually quietly
- Makes verbal noises whilst listening
- Repeats the last word or phrase several times
- Uses the person’s name excessively when speaking to them
- Talks excessively about the same few topics
- Overwhelmed by too many verbal directions
- Pulls person’s hand to get them to move in a certain direction, rather than asking
- May have a keen interest in books and reading (or have little interest/ability in reading)
- May hold conversations quite adequately, but maybe slowly or hesitantly because of their processing speed
- May have strong personal memories of people, places, events – strong sense of order and place
- Inability to follow instructions
- Finds it hard to work out the rules of social conversations
- Constantly tuned into conversations of those nearby
Experiences strong reactions because of a lack of awareness of what others may be feeling
- Lack of eye contact; or gazing for long times at same thing
- Not tuned in to body language, gestures, facial expressions – or misreads these
- Assumes that others are thinking same as they are, and have same interests
- Can be empathetic once realise others are feeling hurt
- Sees things from a point of view that is different from many others
- Studies other’s expressions intently (can prefer simplified, cartoon characters – which may be poor role models)
- Refers to self in third person
- Unaware of degree of pressure being used when hugging others; may squeeze too tightly or for too long
- Has little interest in in other people’s opinions or preferences
- Gets too close to others for their comfort
- Aware of self as somehow different from others
Not comfortable with being centre of attention, or lot of questioning, or too much praise:
- Dislikes self-promotion; will hold back on things until sure of own abilities
- Immobilised by anxieties or by feeling that has done wrong
- Other people’s commands seen as being unnecessary intrusions
Over- or under-sensitive to light, noise, touch, strong tastes or smells:
- Everyday world can feel like a sensory assault
- Fascinated by patterns, shapes, lights
- Clothes feel scratchy
- Dislike of sudden loud noises such as sirens, hand-drier, and burst balloon.
- Likes sensations of different textures/objects
- Pressure on skin felt as discomforting; resists being held or touched
- Strong dislikes/likes re food and drinks – intolerance of colours, textures, arrangements on plate etc
- Prefers to have times in own small space (in/under/behind)
- Good sense of hearing
- Reduced sensation of pain
Can like self-generated sensations; likes controlled sensations and getting sense of control over own environment:
- Fidgets; stretches feet against surfaces
- Self-stimulates with familiar actions and objects
- Likes spinning round; likes swinging, and being swung
- Chews nails
- Hums to self; talks to self; sings to self
- Clashes things together to hear sound; pounds things
- Drops things onto hard surfaces
- Squeezes into tight spaces; likes sensation of being held fast (but can also avoid hugs or being stroked)
- Can self-harm eg bangs hands, fists, head
- Applies pressures to own body or to bodies of others
- Listens to, or generates, chosen loud music or noises in order to drown out other, potentially overwhelming, sounds
Emotionally reactive; lack of emotional self-regulation. Can feel out of control, confused, frightened or anxious:
- Reacts physically to situations
- Lashes out; hits; bites
- Has sudden verbal outbursts
- Grabs at things; puts hand (or something being held) in the way of others
- Small things can be triggers for sudden mood-changes
- Emotions can feel illogical and out-of-control: easily overwhelmed to trigger an inconsolable meltdown
- Hard to channel energy that can seem unruly
- Has difficulty self-regulating own levels of anxiety
- Has low levels of control over own impulses when things get too much
- Gets emotionally exhausted and shuts down
- Struggles with own strong feelings
- Has difficulty taking turns or waiting in line
- Has nervous laughter as a quick response to things
- Demolishes things; knocks things over if frustrated
- Can have strong fears and phobias
- Shrieks or screams as defence or release
Difficulties learning from contexts; repeats same mistakes:
- Unaware of consequences
- Finds it hard to predict what will happen next
- Unaware of the danger in situations
- Unable to understand the motives of others; overly trusting or overly suspicious of others
- Repeats the same actions, with the same outcomes
- Difficulties transferring skills from one setting to another
Can be clumsy; has irregular movements; likes large sweeping gestures
- Easily breaks things
- Unaware of reach of body; misjudges some distances
- Slow at developing sport-skills, coordination, fine and gross motor skills
- Low awareness of where body/arms/legs are in relation to other people or things
- Irregular patterns of walking/movement; walks on toes
Likes being imaginative, creative, explaining and researching/questioning
- Seeks out universal principles; fascinated by rules and laws
- Fascinated by number relationships and counting
- Creates an imaginary world; invents fantasy scenarios
- Takes on roles of characters and acts these out
- Sticks to particularities, has difficulty jumping to generalities
- Follows through literally on things
- Can be good at sequencing
- Fascinated by how things work
- Strong sense of relationship between objects; good sense of direction
- Strong visual memory
- Ambitious to success in improbable/impractical things
- Good at observing detail
- Relentlessly curious (stops to look at everything)
- Always listening and observing
- Likes puns and catchphrases
- Relates separate bits to combined wholes
- Can concentrate for long times in focused situations
Autism clearly exists. Yet, overall, if it can appear to be anything and everything in the above lists (drawn from descriptions by autistic people and organisations) then it becomes difficult to get the common understandings and shared conversations necessary if society is to leap forward rapidly in meeting the needs of people with autism.
This is just one of a number of puzzles that get thrown up when an innocent bystander wanders into the field of ‘what is autism?’ Other potential sources of common confusions are explored in the next section.
- Some of the issues and difficulties around perceptions of autism
Numbers, prevalence and persistence
Autism is a condition that shows up in around 1-2% of the population. Even though this is low as a percentage, it represents significant numbers within the total population of a place like the UK. This figure is derived from recorded identifications based on closely observed behaviours. There may be a number of people not identified which would take the number up a bit but, relatively, it is still not very prevalent.
On these figures a classroom teacher, over the average classroom-based span, may have to directly teach only a few children showing autistic characteristics. At the same time we should expect that all teachers are prepared (both in awareness, in attitudes and in teaching skills). Similarly, many employers may never employ autistic adults in sufficient numbers for them to really make permanent organisation-wide adaptations, but we should still expect employers to be prepared for the possibility of making suitable work arrangements around individuals’ particular needs.
In many people’s minds autism is associated with children more than with adults, even though it might be expected that autistic children are likely to grow up to be autistic adults. Certainly, autism is related to the development of the brain and is therefore being set during the first years of life. There is currently a strong emphasis on early intervention, early help and a focus on the early years being seen as important in identifying those patterns of development that result in a lifelong condition.
There is (as yet) no simple laboratory test for autism. However, the observation of different levels of proteins in autistic people has led to a suggestion that a simple blood test might one day be developed. At the moment, autism is identified through close observation by a person (often a doctor) with a good experience of autism, in conjunction with others such as speech and language therapist, neurologist, special education teacher.
Nor is there any simple ‘cure’. Autism is seen as a lifelong condition, those identified as having autism spectrum disorder having those characteristics for the rest of their life. The basis for this gets firmly put in place during the first few months/years of life in ways that make it resistant to any subsequent reshapings of neural networks. At the same time, the brain has an ongoing plasticity and a capacity for change so that some of the associated behaviours can be modified, as well as becoming more manageable through support and self-management. It may be that some traits that might have developed may be able to be left dormant (but not eliminated) by careful control of environmental triggers.
In one report, 30% of those with a childhood identification of autism do not retain this as they get older. This could be because the individual characteristics reduce in effect as the brain continues to develop, or the person manages the internal pressures so that the results of these are less externally observable, or it could be a feature of the availability of ongoing assessment for (and availability of) ongoing support.
Origins and causes
Autism is the natural expressions resulting from a person’s particular brain development. It is not a simple genetic defect. It is more a situation/a condition/a disorder, relying on a mix of multiple genetic influences with the environment – maybe even being sustained over one or two generations. Many of the same gene processes associated with autism also have the potential to affect the rest of the population, as if everyone has some genetic risk but not everyone has the outcomes determining autism.
Research, and explanations, can be explored at three levels: genetic, neurological and cognitive (recognising that these are interconnected levels of activity). It might seem logical to suggest that gene activities determine neurological activities which, in turn, determine cognitive activities. At the same time, things may not be simply linear but may include a variety of feedback mechanisms between the levels of activities as well as within each level.
There is lack of certainty about the specific causes of changes in child brain development. There have been a number of theories put forward (with the usual issues of correlation cf causation; sample size; etc). There are conflicting sets of evidence around some aspects. Things are often indicative rather than definitive. There is also the problem that autistic characteristics vary strongly across individuals and altered brain connectivities can be unique to each individual: so things that correlate with characteristics in one person may not correlate to the same degree with characteristics in another person.
Possible causes have been attributed to many things: the effects of common chemicals (such as pesticides, flame-retardants in furniture and clothing, plasticisers in tubes and bottles … and much else) which may have the potential for interference with brain developments at various key stages (embryo, foetus, infant, teenage). Other potential linkages have been made between an increased risk of autism in children with a family history of those auto-immune diseases (eg hypothyroidism, psoriasis) where is a failure in the body’s ability to recognise ‘self’.
Neurological studies involving ‘brain scanning’ have advanced some understandings of brain developments. Comparison of autistic/non-autistic children has indicated various lines of thought, but can still be ambiguous (eg brain enlargement in some areas/ brain underdevelopment in others? Larger than usual number of neurons? More nerve fibres running from inputs, eg to auditory cortex, and on to two areas of brain associated with processing feelings and monitoring/evaluating emotions?)
Where autism is seen as requiring a small number of developmental impairments all to be in place together (as in the three defining impairments most commonly put forward), this raises the question of whether or not they all stem from the same root cause. In some cases where two of the impairments seem closely related, the third may hardly be affected – or not sufficiently enough to meet the overall conditions for autism to be diagnosed, It appears that the three commonly proposed impairments are relatively independent of each other, emerge at different times, with different trajectories and may have different likelihoods of improvement. This suggests three separate, or loosely linked, causes rather than one single underlying one.
Rather than simple mechanisms there may be chains of relationships eg. Behaviours might get associated with increased levels of serotonin in the developing brain; this can itself get linked to a mother’s exposure to selective serotonin re-uptake inhibitors; with other further linked ‘causes’ being put forward as some form of chain sequence. Other things can be thrown into the mix, in the way that there has been a recent suggestion that excessive uptake of folic acid may play some role (which itself has to sit alongside evidence that intake of folic acid can be a protective factor); or the overdevelopment/underdevelopment of connections across different parts of the brain; or unusual levels of particular immune cells; or a host of other suggestions.
Of course, various suggested causes have been rigorously put forward in the past and widely believed initially only to be later dismissed.
Whatever the origins there may be no single ‘cause’ but a range of ‘development pathways’. We may always be in a ‘best-yet’ position of understandings and explainings that get refined and amended over time.
There is a social-determination aspect as well. The more society becomes fast-moving, complex, making rapid-response demands on people, and inundating people with noise and jagged flows of information from a variety of mechanical and electronic sources then the more any autistic traits will be highlighted. One ‘solution’, if it were only possible, would be to slow society down and make it a quieter, more orderly, place for everyone.
For families experiencing autism there may well be less interest in causes and more interest in practical outcomes. Within all of the above, it has to be remembered that autism remains a lived reality in the lives of many families and individuals whose time and energies get taken up in managing their situation within a wider set of social attitudes and structures.
Identification, diagnosis and assessment
There are varying approaches to autism in different parts of the world, and within different groups. The broad variation in the human condition has been variously viewed through perspectives that can be simplified as ‘medical’ and ‘social’ coupled with differing opinions about the range that constitutes ‘normal and ‘different’. These different perspectives each comes with its own views around identification, diagnosis, assessment and response.
One dominant approach stems from the American Psychiatric Association and its reliance of specifically-defines symptoms, listed in a reference manual etc. In 2013 this approach revised its definitions of autism. Previously separate diagnoses (autistic disorder, Asperger’s disorder and so on) under the single term Autistic Spectrum Disorder. The defining features, for diagnosis, were reduced and more emphasis was put on identifying the needs an individual may have within everyday life, at a number of levels of severity. Whilst this is influential it is not the main approach followed in the UK.
Any listing of the characteristics associated with autism (ie those observable traits looked for in any assessment) are best thought of as a set of behaviours rather than as a checklist of deficits or of special abilities. There are some for whom a ‘can’t do’ list is unnecessarily negative; there are those who see the list as ‘neutral’ statements based on norms and averages for all children; there are those who define some versions of autism in terms of behaviours that can be social assets and would want an assessment to reflect this.
For some the purpose of identification and assessment is (mistakenly) seen as being there to apply a label to something not previously known. For those most closely experiencing autism within their lives, the identification of the particular behaviours associated with autism is important in unlocking the direct individual interventions and supports, varying from person to person, which need to be in place.
Social attitudes and levels of awareness
In the absence of a wider social awareness of autism, children can easily be seen as ‘oversensitive’, ‘overdramatic’, ‘naughty’, ‘spoilt’, ‘slow’ etc. Parents can be seen as ‘overprotective’, ‘over-lenient’, ‘fussy’, ‘difficult’, ‘inadequate’ etc. Adults can be seen as ‘detached’, ‘linear’, ‘literal’, ‘socially awkward’, ‘geeky’ etc.
With more awareness, people with autistic behaviours can be seen as having unique personalities, having a number of difficulties and having a range of positive attributes. Again, with wider awareness and clearer understandings, some of the difficulties that society puts in the way can be reduced or removed.
Labels and language used
There is a degree of clunkiness to the terminologies used. As with all situations, different terminologies have been used over time, across countries, or in different settings. – some of which a proportion of people find helpful; and some of which a proportion of people find unhelpful or offensive.
A person can be said to be autistic, or be affected by autism, or have autism, or have autistic tendencies, or be on the autism spectrum, or exhibit autism spectrum disorder, or have an autistic condition … each of which is open to its own range of interpretations, understandings, misunderstandings and disagreements.
Autism is described as being a ‘spectral’ condition – but this, itself, has been understood (and misunderstood) in different ways:
- There is a spectrum of neurological disorders with autism at its core
- There is a spectrum of autisms ie several autisms rather than a single thing
- There is a variety of things that were once viewed as separate conditions but which are, now, more commonly seen as all being the single spectrum of autistic conditions
- People can be in different positions on a range of types of autism (strongly autistic/mildly autistic; low functioning/high functioning etc).
- Each person has their own profile spectrum of distinctive social communications and behaviours
- Each autistic individual demonstrates the various autism-associated characteristics to different intensities – so each has their personal spectrum of observable behaviours.
Whether correct or not, all of the above regularly appear in various popular articles about autism. Information about autism is becoming much more readily available in magazines, on websites, in books and through TV programmes. One result is that the issue is sometimes not a lack of information but a lack of interpretation of that information.
It is understandable, therefore, that the general public have some difficulties getting to grips with what autism is/is not. The discussions have been particularly clouded around a number of recurring points:
- Because some of the fragmentary behaviours commonly associated with autism can be observed within non-autistic people, there is a belief that ‘we can all be a bit autistic’. This belief is reinforced by talk of there being an autistic spectrum, or of a person being on the autistic spectrum, which leaves room for people to believe that there is a linear gradient from non-autistic to fully-autistic.
- There is a broad range of conditions that are classified as being autism(s) which have recently been gathered under one heading. It is difficult for many people to work with the idea that there is one entity that has a myriad of versions so diverse that we are left with each case being individual yet there being some defining features common to such a broad range.
- Autism is highly individual in how it is developed in each person. This makes it difficult for those people who need to see clear ‘types’ or well-defined ‘symptoms’. For every way in which autistic characteristics are manifested in one individual they may know of examples that run counter to that.
- In popular culture autism has often been linked to being a genius or having special skills even where this is clearly not the universal case.
- Autism, as a label, has taken on the normal collection of strong feelings (by those most closely involved with it) about what are approved ways of describing it. This creates the drives for stronger awareness, for better understanding, for more support. At the same time, if there is an over-fixation of positions and viewpoints, there is likely to be a reduction in people’s willingness to stay open to fresh ideas and insights.
- On the street, in everyday life, it is the observable behaviours that are noticed. There is currently a strong emphasis on young children, parenting, behaviour management, upbringing, relationships etc. It then becomes easiest for bystanders to see children’s behaviour in these terms rather than as potentially being linked to autism.
- Whilst it is simple for people to grasp that there are a few clear things that result from very definite neurological developments, these then lose clarity when attempts are made to describe how these show through in each and every individual.
Does any of this matter?
There is a growing awareness that autism has its complexities. In parallel, there is a need to get some clearer understandings in the way autism gets talked about and portrayed, in order that there is improvement in society’s general awareness of what autism is, is not, or can be.
Has this exploring got anywhere?
Despite its wordiness, this exploration around some of the issues connected to understanding autism can be seen as having some fixed points as pointers for any interested individual wanting to undertake further thinking. These include:
There is an identifiable thing that is defined as autism. Yet every autistic individual is uniquely different; autism can be manifested in a wide variety of different fragments of behaviour; it gets entangled with other conditions (each of which may have its own range of understandings). This then clouds what can be pinned down as being ‘this thing called autism’ as a precise condition that can be so definitely observed and assessed.
One key puzzle is how to strip things back to be clear about those behaviours and characteristics that are absolutely unique to the thing understood as autism and then to build up the variety of individual variations on that base.
Areas of misunderstanding are likely to continue, making broader awareness harder to get to, which then delays any required structural and cultural improvements in society in general.
Awareness is increasing but we are still far from widespread social and environmental changes being undertaken to make the behaviours/triggers associated with autism less formidable to manage.