DIFFERENT SENSORY EXPERIENCES - DIFFERENT SENSORY WORLDS
By Olga Bogdashina
Bio: Olga Bogdashina received her Ph.D. in Linguistics from Moscow
Linguistics University and her MA Ed. Autism from Sheffield Hallam University.
Olga’s son, aged 13, is autistic. She has worked extensively in the field of
autism as teacher, lecturer and researcher, with a particular interest in
sensory-perceptual and communication problems in autism.
For 10 years
Olga Bogdashina lived in Gorlovka in Ukraine. Autism has limited recognition in
the countries of the former USSR. In 1994 Olga established and became President
of the first Autism Society in Ukraine - “From Despair to Hope”. She is Director
of a voluntary day school in Gorlovka for children on the autistic
spectrum.
Olga has had several articles and leaflets published in
Ukraine, Belgium, Poland and the USA. She is the author of two books - “Autism:
Definitions and Diagnoses”, Ukraine and “A Reconstruction of the Sensory World
of Autism”, SHU Press, UK.
She is an active conference presenter and is
presently conducting research on sensory and communication issues in autism in
the UK.
‘Learning how each individual autistic person’s senses function is one
crucial key to understanding that person.’ (O’Neill, 1999, 31)
Everything we know about the world and ourselves has come through our senses.
All our knowledge therefore is the product of what we have seen, heard, smelt,
etc.
Though autistic people live in the same physical world and deal with the
same ‘raw material’, their perceptual world turns out to be strikingly different
from that of non-autistic people.
It is widely reported that autistic
people have unusual (from non-autistic point of view) sensory-perceptual
experiences. These experiences may involve hyper- or hyposensitivity,
fluctuation between different ‘volumes’ of perception, difficulty interpreting a
sense, etc. All these experiences are based on real experiences, like those of
non-autistic people, but these experiences may look/sound/feel, etc. different,
or they may be interpreted differently. We think about the world in a way we
experience it and perceive it to be. Differences in perception lead to a
different perceptual world that inevitably is interpreted differently. So can we
be sure that we are moving in the same perceptual/social, etc. world if our
reconstructions of it are so different? Can we be sure that we see, hear, feel
etc. the exactly same things? How can we know that only our ‘perceptual version’
of the world is correct and theirs is wrong? Whatever the answers to these
questions are, it is worth remembering that autistic people can’t help seeing
and hearing the ‘wrong thing’, and they do not even know that they see or hear
the wrong thing (Brad Rand).“Normal” connections between things and events do
not make sense for them, but may be overwhelming, confusing and scary.
Since the first identification of autism in 1943 (Kanner) a lot of
research has been carried out to study this condition from different
perspectives. What has not been taken into account by the experts in the field,
however, is the opinion of the ‘native experts’ - autistic individuals
themselves. Despite the fact that many people with autism have tried to
communicate their views and insights, these attempts have mostly passed without
much professional notice, one of the reasons being, their views and insights are
unconventional to the majority of people (so-called ‘normal’
people).
Here we try to show that ‘different’ does not mean ‘abnormal’ or
‘defective’, and ‘normalcy’ is a very relative term, as the ‘norm’ is often
applied to the performance of majority, and it is more justifiable to term it
‘typical’. To avoid having to use the term ‘normal’, autistic people at Autism
Network International have introduce a new term - ‘Neurologically Typical’ (NT)
to describe non-autistic people.
Here I deliberately use the term
‘autistic people’ rather than ‘people with autism’ because autism is not
something that is just attached to them and cannot be easily removed. I am aware
of the ‘people first, then disability’ approach. However, without autism they
would be different people as being autistic means being different. If people
with autism themselves prefer to name themselves autistic why should we be so
shy to call them that? Just to show them our respect? But there are other ways
to do it. Why should we be ashamed to call them autistic? Autism is not
something to be ashamed of.
For autistic people, autism is a way of
being. It is pervasive, it colours every experience, every sensation,
perception, thought, emotion, in sort, every aspect of existence (Sinclair,
1993). They do not respond in a way we expect them to, because they have
different systems of perception and communication. Bob Morris (1999) calls it a
different set of SPATS - Senses, Perceptions, Abilities and Thinking Systems,
that are not in the same spectral range as NT individuals. Of course, it is very
difficult to communicate with someone who uses a different ‘language’ (and
autistic people are ‘foreigners’ in any culture). But it is equally wrong to use
non-autistic methods to teach and treat autistic children. It is sure to fail
and sometimes even to damage their life.
We have to give up our conventional
non-autistic assumptions and let them teach us how their SPATS work in order to
build bridges between the two worlds. Our approach should be to listen to
autistic individuals who are willing to communicate and explain how they
experience the world and not to assume that only our views are right because we
are specialists/parents. It is the same as if I said to you: “Sorry, but you
speak English (French) with an accent. Let me teach you English (French)
pronunciation. It doesn’t matter that I am Russian. I am a linguist so I know
better than you how to speak your language properly.”
Although in the
1960s-70s the idea of possible sensory-perceptual abnormalities as one of the
core features of the disorder was put forward (Rimland, 1964) and theory of
sensory dysfunction was formulated (Delacato, 1974) till recently it has been
ignored by the researchers. What makes one wonder, is that, though unusual
sensory experiences have been observed in autistic people for many years and are
confirmed by autistic individuals themselves, they are still listed as an
associated (and not essential) feature of autism in the main diagnostic
classifications - DSM-IV (APA, 1994) and ICD-10 (WHO, 1992).
It is worth
learning how autistic individuals themselves consider the role of
sensory-perceptual difficulties they experience.
The personal accounts of
autistic individuals reveal that one of the main problems they experience is
their abnormal perception and many autistic authors consider autism as largely a
condition relating to sensory processing.
Temple Grandin suggests that
there is a continuum of sensory processing problems for most autistic people,
which goes from fractured disjointed images at one end to a slight abnormality
at the other. Nonverbal individuals usually have more severe distortions and
sensitivities. As the systems work differently their responses to sensory
stimuli are ‘normal’ (from autistic point of view), though different and
unconventional, and not abnormal or defective.
What makes the matter even
more complicated is that no two autistic people appear to have the exactly same
patterns of sensory-perceptual experiences.
It is vital to understand the way
autistic people experience the world, as often very well-meaning specialists are
“failing people with autism… (and) most (autistic people) have not been helped
at all, many have felt degraded and some have been harmed” (Gerland, 1998)
because of the misunderstanding and misinterpretation of the condition.
Understanding of the way autistic people experience the world will bring
respect to people with autism in their attempts to survive and live a productive
life in our world instead of unacceptance often exhibited by the general
public.
When a child is diagnosed autistic, educational priorities focus
on behavioural interventions aimed at development of social and communicative
skills, while the child’s ‘sensory needs’ are often ignored. Paradoxical as it
may seem, sometimes autistic children benefit from being misdiagnosed as having
visual and/or auditory impairments. It especially applies to the so-called
low-functioning (or ‘severely autistic’) children whose sensory perceptual
problems are usually very severe. Being placed into the environment where their
sensory difficulties are addressed these children might respond to social and
communication interventions better than if they were placed into autistic
units/schools where the main emphasis is only on training in
social/communicative behaviours.
In the case of such disabilities as
blindness/deafness the main emphasis is on providing sensory substitution in
order to replace one sensory input the person lacks (vision/hearing) by another
(e.g., tactile aids: Braille alphabet, etc.) and adjusting the environment to
facilitate functioning of people with visual/auditory impairments. The problem
with autism specific sensory perceptual difficulties is that they are often
‘invisible’ and undetected. The matter is complicated by the fact that autistic
individuals are very different in their sensory perceptual profile. Treatment
programmes that are appropriate and beneficial for one child may be painful and
harmful for the other. Thus, if the ‘right problem’ is addressed, the child gets
more chances to benefit from the treatment.
Likewise, we never blame a
blind child when he cannot name the colours of the pictures we show him, or
never expect a deaf child to come when we call him from 2 rooms away, we should
not demand from a child whose disability is not straightforwardly visible to
‘behave himself’, but we’d better try to find out the reason for his
‘misbehaviour’. We accept that we cannot cure blindness and we do not waste time
and effort to teach a visually impaired child to recognize the colours while
using a bar of chocolate as a reward. We see our task to help a blind child
function using different ways and compensatory strategies, and adjusting the
environment to make it easier for him to orient in space. We accept and respect
his disability that, if appropriately addressed, does not interfere with the
quality of life.
While people with ‘visible’ disabilities, such as, e.g.,
visual/hearing impairments or cerebral palsy, are provided with special tools to
lessen their problems (glasses, hearing aids, wheelchairs, etc.) autistic
children with ‘invisible’ sensory processing problems are often denied any
support to accommodate their difficulties.
Whatever educational approach is
implemented (TEACCH, Applied Behaviour Analysis, etc.) sensory interventions are
vital in order for the child to benefit from it. To effectively teach and treat
autistic children it is necessary to understand how the qualitative differences
of sensory perception associated with autism affect each particular child. Often
it is not the treatment and the number of hours you work with your child, but in
‘what perceptual world’ you both are, i.e., whether you are in one and the same
perceptual world or in two different ones.
The first step to make in the
direction of addressing these problems is to recognize that they do exist. We
must understand how the child experiences the world through each of the channels
and how he interprets what he sees, hears, feels, etc. in order to design
treatment programmes in accordance with his perceptual abilities and deficits.
Understanding each particular person’s specific difficulties and how they may
affect this person’s functioning is vital in order to adopt methods and
strategies to help the person function in the community.
We can distinguish some features of ‘autistic perception’ of the world, based
on the testimonies of high-functioning autistic individuals and close
observation of autistic children. Below we will discuss just a few of many
commonly reported perceptual phenomena experienced by autistic individuals.
These experiences are not unique. We all may ‘feel strange’ sometimes
and have similar experiences now and then, especially when tired or drugged.
What is unique about these experiences in autism is their intensity and
continuity: these experiences are ‘normal’ for them.
'Literal
perception': Autistic people seem to perceive everything as it is. It is sort of
‘literal perception’, e.g., they may see things without interpretation and
understanding (literal vision).
Inability to distinguish between
foreground and background (‘Gestalt perception’):
There is much evidence that
one of the problems many autistic people experience is their inability to
distinguish between foreground and background stimuli (inability to filter
foreground and background information). They are often unable to discriminate
relevant and irrelevant stimuli. What is background to others may be equally
foreground to them; they perceive everything without filtration or selection.
As Donna Williams (1996) describes it, they seem to have no sieve in
their brain to select the information that is worth being attended. It can be
described as ‘gestalt perception’, i.e. perception of the whole scene as a
single entity with all the details perceived (not processed!) simultaneously.
They may be aware of the information others miss, but the processing of
‘holistic situations’ can be overwhelming.
Their difficulty to filter
background and foreground information caused by gestalt perception leads to
rigidity of thinking and lack of generalization. They can perform in the exactly
same situation with the exactly same prompts but fail to apply the skill if
anything in the environment, routine, prompt, etc. has been even slightly
changed. For example, the child can perform the task if he is being touched on
the shoulder and fails if he has not been given the prompt. Or a familiar room
may seem different and threatening if the furniture has been slightly
rearranged, etc. These children need sameness and predictability to feel safe in
their environment. If something is not the same, it changes the whole gestalt of
the situation and they do not know what they are expected to do. It brings
confusion and frustration. The strategy is to always communicate to the child
beforehand, in a way he can understand (i.e., visual, tactile, etc.) what and
why will be changed. Changes should be gradual, with his active participation.
Paradoxically, autistic people have much more trouble with slight changes than
with big ones. For example, they can cope with going somewhere unfamiliar much
better than with changes in the arrangement of the furniture in their room. The
explanation of this phenomenon lies in the gestalt perception. Their encounter
with new information is a new gestalt, which will be stored, while any changes
in the ‘familiar gestalt’ bring confusion: on the one hand, it becomes a
completely ‘new picture’, on the other hand, in the familiar situation they are
confronted with an unfamiliar environment.
On perceptual level the
inability to filter foreground and background information may bring sensory
overload. Children are bombarded with the sensory stimuli. They are ‘drowned’ in
them. For individuals with ‘auditory gestalt’ perception, e.g., a lot of effort
should be made to understand what is being said if there is more than one
conversation going on in the room or more than one person speaking at a time.
They are bombarded with noises from all directions. If they try to screen out
the background noise they also screen out the voice of the person they try to
listen to.
The task should be to find out which modality does not filter the
information and then to make the environment ‘visually/auditorily, etc. simple’.
The next step would be to teach the person ‘to break the
(visual/auditory/tactile/olfactory/gustatory) picture’ into meaningful units.
Here arises the question: Does the explanation of ‘gestalt perception’
contradict the ‘weak central coherence theory’ (Frith, 1989) in autism? No, it
does not. The theory of weak central coherence ‘starts working’ at the next
stage of the process of perception when gestalt perception inevitably leads to
distortions and fragmentation, in order to limit the amount of information to be
processed.
Gestalt perception is often overwhelming and may lead to all sorts
of distortions during the processing of information, such as fragmented
perception, hypersensitivity, delayed processing, etc.
Hypersensitivity
and/or hyposensitivity:
In the case of hypersensitivities, even
‘visually/auditorily, etc.’ quiet environment may cause overstimulation and
challenges for the child. Autistic people must be protected from painful
stimuli. For example, in the case of visual/auditory hypersensitivity) visual
and auditory distraction should be kept to a minimum. Tactile hypersensitivities
should be addressed by choosing the clothes and fabrics the child can tolerate.
Wearing tight clothes that apply pressure helps to reduce self-stimulatory
behaviours. It is important to remember, that if you cannot hear/see/smell, etc.
some stimuli, it does not mean that the child ‘is being stupid’ if distressed by
‘nothing at sight’. It is vital to consider the level of ‘sensory pollution’. If
there are several conversations in the same room, plus fans working plus people
moving around plus fan working two rooms away… the child with sensory
hypersensitivities is sure to be overwhelmed. There are many challenging
behaviours (self-injury, tantrums, aggression, etc.) that can be dealt with
effectively by simply changing the environment.
However, if a child is
hyposensitive, extra stimulation through the channels that do not get enough
information from the environment should be provided.
As each child is
unique, very often we can find children with different hyper- or
hyposensitivities in one and the same classroom. It is often very difficult to
adjust the environment to satisfy needs of several children as the same stimuli
may cause pain in some children and bring pleasurable experiences in others. The
knowledge about each child’s sensitivities can help the teacher to plan the
activities and address each child’s particular needs.
We can get a lot of
information from watching repetitive behaviours. These behaviours are the key to
understanding the way the child experiences the world, the problems he faces and
the strategies he has acquired to cope with his difficulties.
Consciously or
unconsciously the child tries to regulate the environment and his responses to
it and acquires defensive strategies and compensations for his deficits. The
child shows us his way to cope with his problems. That’s why, no matter how
irritating and meaningless these behaviours may seem to us, it is unwise to stop
them without learning the function they serve and introducing experiences with
the same function.
Repetitive behaviours in autism are multi-functional.
They may be:
defensive: in order to reduce the pain caused by
hypersensitivities;
self-stimulatory: to improve the input in the case of
hypersensitivity;
compensatory: to interpret the environment in the case of
‘unreliable’ channels;
just pleasurable experiences that help to withdraw
from confusing environment.
These behaviours will change with the child's
changing abilities. As deficits in one area interact and affect other areas,
improving functioning in one sensory modality may bring improvements in the
others. For instance, reducing visual hypersensitivities (with the help of
tinted glasses, e.g.) may make auditory and tactile stimuli less overwhelming.
By looking at how the child reacts, it is possible to reconstruct and
assess the child’s problems in various sensory channels. The child’s
‘self-prescribed’ movements (rocking, flapping hands, jumping, etc.) give a very
clear idea of what the child needs.
For example, if a child frequently covers
his ears (even if you do not hear any disturbing sounds) it means his hearing is
hypersensitive, and it is your job to find out which sounds/noises disturb him.
If a child flicks his fingers in front of his eyes, he might have problems with
hypersensitive or hyposensitive vision. Children who like crowds, noisy places
have either mild sensory problems or are hyposensitive.
If we interpret
these behaviours, we will be able to imagine (if not fully comprehend) how the
child perceives the world and help the child develop strategies to cope with
these (often painful) sensitivities.
However, one of the difficulties in
interpreting the child’s behaviour caused by sensory processing differences is
our own ‘non-autistic’ sensory function. We have to train ourselves to perceive
and understand the world from the individual’s perspective. Only then will we
join the person ‘on his territory’, in his perceptual world and will not have to
live in two parallel ones.
Inconsistency of perception (Fluctuation
between hyper- and hyposensitivity):
One of the baffling features of autistic
people is their inconsistent perception of sensory stimuli. A child who appears
to be deaf on one occasion may react to an everyday sound on another occasion as
if it is causing acute pain; visual stimuli that may appear so bright on one
occasion will on another occasion appear very dim. Similarly, reaction to pain
may vary from complete insensitivity to apparent “over-reaction” to the
slightest knock (Jordan & Powell, 1990). At times it may appear that
everything goes well, at other times the child may exhibit challenging
behaviours under similar environmental conditions.
Fragmented perception
(Perception “in bits”, stimulus overselectivity):
Because of gestalt
perception, when too much information needs to be processed simultaneously, very
often people with autism are not able to ‘break’ the whole picture into
meaningful units and to interpret objects, people, and surroundings as
constituents of a whole situation. Instead they process ‘bits’ that happen to
get their attention.
This fragmented perception can affect all the
senses.
One of the theories attempting to explain this phenomenon is the
Central coherence theory formulated by Uta Frith (1989) and developed by
Francesca Happe (1994). According to this theory people with autism lack the
‘built-in form of coherence’ (Frith, 1989) and, as a result, they see the world
as less integrated, i.e., analytically rather than holistically.
In
contrast to weak central coherence hypothesis in autism, one may hypothesize
that people with autism possess a very strong drive for coherence (i.e.,
holistic perception of the world) with the main difficulty being to break the
gestalt into meaningful units in order to analyze them separately. Without
perceiving separate units as integrated parts of a whole, it is impossible to
interpret the situation. Fragmented perception caused by inability to ‘break
gestalt’ into integrated and meaningful parts fits into the definition of weak
central coherence. Thus, we may conclude, that weak central coherence theory may
be applied at later stages of sensory perceptual processing.
In the
state of fragmented perception, the person has a great difficulty to deal with
people as not only they seem to consist of many unconnected pieces but also the
movements of these ‘bits of people’ are unpredictable. The strategy to cope with
the problem is to avoid people and never look at them. It does not mean that
they cannot see an entire person (perceptual level). They seem to be unable to
process the meaning of an entire person but process them bit by bit instead. As
a result the mental image of a ‘collection of bits’ is often meaningless and
often frightening. Fragmentation complicates the interpretation of facial
expressions and body language and thus hinders or even blocks the development of
non-verbal communication.
Fragmentation may be felt in all sensory
modalities. For example, Alex, an autistic boy, is sure that he (like everybody
else) has two foreheads and always asks his mother to kiss ‘both’ - ‘this one
and that one’.
Perception ‘in bits’ results in that autistic individuals
define people and places and things by these bits. They can suddenly find once
familiar things to be strikingly unfamiliar if slight components are changed,
such as when the furniture has been moved or someone does not wear the same coat
as usual (Williams, 1996). As they process what they perceive piece by piece and
not as a whole, they recognize things and people by the ‘sensory pieces’ they
store as their definitions. E.g., they may ‘recognize’ their mother by the
colour of her dress and may not ‘recognize’ her if she wears a dress of
different colour, or they may know people and objects by smell, sound,
intonation, the way they move, etc.
Routine and rituals help to
facilitate understanding of what is going on and what is going to happen.
Introduce any change very slowly and always explain beforehand what and why is
going differently. Structure and routines make the environment predictable and
easier to control.
Delayed perception (delayed processing):
It is not
uncommon for autistic children to exhibit delayed responses to stimuli:
A
person can be delayed on every sensory channel.
In the most extreme cases, it
can take years to process what has been said. Sometimes it takes days, weeks or
months. The words, phrases, sentences, sometimes the whole situations, are
stored and they can be triggered at anytime. In less extreme cases, to process
something takes seconds or minutes. They may be able to repeat back what has
been said without comprehension that will come later.
Due to delayed
processing autistic individuals may need some time to process the question and
their response. (Immediate responses are often given on ‘autopilot’, triggered
by memories). Before proper response autistic people must go through a number of
separate stages in perception, and if this long decision-chain is interrupted by
the outside world, the autistic person must start all over again because
overselectivity has changed the scene completely (VanDalen, 1995). In other
words, an interruption effectively wipes away any intermediate result,
confronting the autistic person literally “for the first time” with the same
object/event/situation”.
Vulnerability to sensory overload:
Many
autistic people are very vulnerable to sensory overload. They may become
overloaded in situations that would not bother other people. A child vulnerable
to sensory overload needs to be in control of his environment. Learning to
recognize sensory overload is very important. It is better to prevent it. A
child may need a quiet place (the ‘isle of safety’) where he can go to ‘recharge
his batteries’ from time to time. ‘First Aid Kit’ (for sensory overload) should
be always at hand. Possible contents are sunglasses, ear plugs, squeezy toys,
favourite toys, ‘I need help’ card, etc.
Autistic children seem to develop
(voluntarily or involuntarily) the ability to control their awareness of
incoming sensory stimuli in order to survive in the world bombarding them with
extraneous information. These compensatory or defensive strategies are reflected
in acquired perceptual styles.
Mono-processing:
To avoid overload of
sensory information, only one modality is processed consciously by the brain.
The person might focus on one sense, for example, sight, and might see every
minute detail of the object. However, while his vision is on, the person might
lose the awareness of any information coming through other senses. Thus, while
the person sees something, he does not hear anything, and does not feel touch,
etc. When the visual stimulus fades out, the sound could be processed, but then
the sound is the only information the person is dealing with (i.e., disconnected
from sight). As the person focuses on only one modality at a time, the sound may
be experienced louder because it is all the person focuses on
(hypersensitivity).
The individuals with autism define this ‘mono’-processing
(monotropism) as one of their involuntary adaptations to avoid sensory overload
or hypersensitivity:
We should be aware of this style of perception in order
to give the child information in a way he will be able to process it. The matter
is complicated by the fact, that they could switch channels and our task is to
find out which channel ‘is open’ to get the information.
Peripheral
perception (Avoidance of direct perception):
One of the characteristics of
autism is avoidance of eye contact. It is an example of peripheral perception,
as it turns out that avoidance of direct perception is not restricted only to
vision but also includes other sensory systems. Direct perception in autism is
often hyper. It can cause sensory overload resulted in switching to ‘mono’.
Autistic children often seem to look past things and are completely ‘absent’
from the scene. However, it could be their attempt to avoid experiencing a
visual/auditory stimulus directly. This strategy gives them the ability to take
in sensory information with meaning.
Perceiving sound, visual stimuli, etc.
directly and consciously may often result in fragmentation: the person can
interpret the part but lose the whole, and incoming information is interpreted
piece by piece. Donna Williams (1996) explains that when taking things
indirectly, peripherally, the fragmentation did not happen; things were more
cohesive, they retained context, whereas the mind-jolting senses of direct
vision and direct hearing could not be consistently relied upon as meaningful
primary senses.
Some autistic people seem to be hypersensitive when they are
approached directly by other people. For some, if they are looked at directly,
they may feel it as ‘a touch’ - sort of ‘distance touching’ with actual tactile
experience.
Avoidance of direct perception for them is another involuntary
adaptation that helps them to survive in a sensory distorted world by avoiding
(or decreasing) information overload.
Systems shutdowns:
When the
person cannot cope with sensory information, he may shut down some or all
sensory channels. Many autistic children are suspected to be deaf, as they
sometimes do not react to sounds. Their hearing, however, is often even more
acute than average, but they learn to ‘switch it off’ when they experience
information overload.
A child with sensory overload learns to avoid
overwhelming sensory bombardment early in life. When sensory input becomes too
intense and often painful a child learns to shut off his sensory channels and
withdraw into his own world.
Systems shutdowns may be considered as an
involuntary adaptation (compensation) when the brain shuts certain systems off
to improve the level of functioning in others (Williams, 1996).
Compensating for unreliable sense by other senses:
Because of
hypersensitivity, fragmented, distorted perception, delayed processing, sensory
agnosia, one sense is never enough for autistic people to make sense of their
environment. Thus, in the case of visual distortions and meaning-blindness, they
use their ears, nose, tongue or hand to ‘see’, i.e., they compensate their
temporary ‘blindness’ through other senses. For example, a child can tap objects
to produce the sound in order to recognize what it is, because visual
recognition can be fragmented and meaningless. Some children smell people and
objects to identify them. To many autistic people the senses of touch and smell
are reported to be more reliable. Many autistic children touch and smell things,
some constantly tap everything to figure out where the boundaries are in their
environment, like a blind person tapping with a cane. Their eyes and ears
function, but they are not able to process incoming visual and auditory
information (Grandin, 1996). Those who experience visual and auditory
distortions prefer using touch to learn about their environment - they ‘see’ the
world mostly through their fingers.
The ability to perceive accurately stimuli in the environment is basic to
many areas of academic, communicative and social functioning. As autistic people
do have ‘differences’ in this area, it is important for those who work and/or
live with autistic children to be able to identify these and to understand how
these differences might relate to the problems autistic individuals experience
in learning and in general functioning. This will enable the provision of more
effective programmes of learning and treatment.
The sensory problems in
autism are often overlooked. As children are unable to cope with the demands of
the world they are not equipped to deal with, they are likely to display
behavioural problems, such as self-stimulation, self-injury, aggression,
avoidance, rigidity, high anxiety, panic attacks, etc. It is important to
remember that these children have no control over their problems, as they are
caused by some neurological differences.
The unique characteristics of
each child will require unique individual strategies, techniques and
environmental adjustments to be implemented. There is no single strategy for all
autistic children as each of them exhibits a very individual sensory profile.
Moreover, with age the strategy that was very useful for this particular child
may not work any more and should be replaced by another one to reflect the
changes in the child’s abilities to function.
As some sensory dysfunction
is present in all individuals with autism it would benefit parents of autistic
children and professionals working with them to become more knowledgeable about
sensory perceptual problems they experience and possible ways to help
them.
However, we need to stop trying to change them into ‘normals’. The
aim of any intervention should be to help autistic individuals to cope with
their problems and to learn to function in the community. Whatever treatment
programme or therapy is used, it does not make them “less autistic”. However,
increased self-knowledge can lead to better compensations for one’s
difficulties, which in turn may decrease symptoms and make the autism less
disabling (Gerland, 1996).
Whatever approach/treatment is chosen the
person working with the child should make the environment ‘sensorily safe’ for
the child and try to ‘move in the same sensory world’. Many behaviours that
interfere with learning and social interaction are in fact protective or sensory
defensive responses of the child to ‘sensory pollution’ in the environment.
Autistic people are vulnerable to being abused. They have to live in the
world which is not designed for them, and they have to deal with people who,
while being aware of the difficulties they experience, often overlook the effort
they are making trying to survive in the world, which is not designed for them.
If we look at their ‘bizarre’ behaviours and responses through their eyes, they
make sense. Our behaviours may equally seem ‘bizarre’ to autistic persons. For
example, how could one enjoy fireworks if your eyes are hit with ‘bunches of
bright arrows’ and the sound in your ears ‘tears them raw’?
We often do
not understand the ‘autistic perspective’, the problems they experience. And
sometimes our ‘treatment’ does more harm than good. Let us take some
examples.
The family was struggling to find the solution to a challenging
behaviour of an 8-year-old autistic boy. The boy removed his clothes at any
opportunity no matter where he was. The mother asked for advice from a
‘specialist’. And the advice was to encourage (?) the boy to keep his clothes on
and reward him (with a chocolate biscuit) when he complies. If we look at this
situation from the ‘autistic perspective’, tactile processing problems are
obvious. The boy himself was aware of which fabric would ‘hurt’ him and tried to
protect himself. His ‘clues’ were not recognized by the people involved. We
could interpret the intervention as follows: A person with broken legs is
encourage to run and promised to be rewarded with a chocolate biscuit. Would you
run?
Another situation: At one of the autistic provisions a teaching
support assistant is happily whistling and singing. Josh, an 11-year-old
autistic boy with hyperhearing, is rocking back and forth. He covers his ears
with his hands, but it does not seem to work and he pushes his index fingers
inside his ears. No effect. Then he pleads with his ‘helper’: “Loraine, stop
singing please. Stop it!” The reaction of the support worker? “Why should I?
Don’t be stupid, Josh.”
If we look at the same situation from Josh’s
perspective we could interpret it as a sensory assault of the child. For this
boy ‘the singing’ (whether it was the pitch of the voice or the sounds of
whistling he could not tolerate) physically hurt his ears, as if the helper
threw stones or litter at him. So why should she stop?
The sensory
environment is very important for autistic people. They lack the ability to
adjust to sensory assaults other people accept as normal. If we accommodate the
environment and try to ‘keep it clean’ in order to meet their very special
needs, the world could become more comfortable for them. With sensory needs met,
problem behaviour becomes less of an issue. If there were no danger to be
attacked, you would not need defense. To make the world safer for autistic
individuals the price would not be very high - ‘just stop singing’ when they ask
you to. And if they cannot ask because of their communication problems, use your
knowledge and imagination to find out what they need.
References
Delacato, C. (1974) The Ultimate Stranger: The autistic child.
Noveto, CA: Academic Therapy Publications.
Frith, U. (1989) Autism:
Explaining the Enigma. Oxford: Basil Blackwell.
Gerland, G. (1998) ‘Now is
the time! Autism and psychoanalysis.’ Code of Good Practice on Prevention of
Violence against Persons with Autism. (Pp. 31-33) Autism-Europe
publication.
Grandin, T. (1996). Thinking in Pictures and Other Reports from
My Life with Autism. New York: Vintage Books.
Happe, F. (1994) Autism: An
Introduction to Psychological Theory. London: UCL Press.
Jordan, R. &
Powell, S. (1990) The Special Curricular Needs of Autistic Children: Learning
and Thinking Skills. London: The Association of Heads and Teachers of Adults and
Children with autism.
Morris, B. (1999) ‘New light and insight, on an old
matter.’ Autism99 Internet Conference papers www.autism99.org
O’Neill, J. L.
(1999) Through the Eyes of Aliens: A book about autistic people. Jessica
Kingsley Publishers.
Rimland, B. (1964) Infantile Autism: The Syndrome and
Its Implications for a Neural Therapy of Behavior. New York: Appleton Century
Crofts.
Sinclair, J. (1993) ‘Don’t mourn for us.’ Our Voice, Vol. 1, No.
3.
VanDalen, J. G. T. (1995) ‘Autism from within: Looking through the eyes of
a mildly afflicted autistic person.’ Link, 17, 11-16.
Williams, D. (1996)
Autism. An Inside-Out Approach. London: Jessica Kingsley Publishers.
Sem comentários:
Enviar um comentário