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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.
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