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LIVING WITH AUTISM..
THOUGHTS ON THE
SENSORY WORLD
Richard Mills
Research Autism
July 2015
Donna Williams
Somebody Somewhere
On anxiety and sensory response
“You must escape because you hear the roar of ‘tidal’ waves (it is the sound of blood rushing through the contracting muscles in your own ears”)
KEY POINTS
• Sensory differences very common in autism- up to 80%?
• Across the whole spectrum
• Affect all sensory modalities
• Now recognised in diagnostic criteria (DSM 5)
• In autism – particular problems in habituation and adaptation
• Offer a plausible explanation for some ‘challenging behaviours’
• Hypo as well as hyper sensitivity
• Could behaviours be an attempt at self regulation – achieve
balance-equilibrium?
• Important implications for programme and environment
BOUBA / KIKI TEST
which is which?
SOME BEHAVIOURS WHICH MAY BE LINKED TO SENSORY ISSUES IN AUTISM
Anxiety/outbursts in crowded environments/ groups
Appears distracted
Discomfort or restless in bright light / dimness preferred
Disorientated in cluttered environments – or rich visual /auditory
stimulation
Fascination – plays with lights and shiny stuff
Repetitive humming or loud outbursts
Discomfort /extreme distress at loud or low frequency noise
Delayed response /distress or over reaction to sudden noise(s)
Extreme reaction to smells – (may be undetected by others)
SOME BEHAVIOURS WHICH MAY BE LINKED TO SENSORY ISSUES IN AUTISM
Preference for -or insistence on (same) bland food
Fascination with the way people smell
Strong aversion to perfumes and air fresheners
Strong preference for gentle or firm touch or pressure
Unusually high or low response to pain
Unusually high or low response to temperature-highly sensitive
Unhappy in new clothes, sensitive to how clothes/ bedding
feels- labels in clothing problematic
AN OVERVIEW OF SENSORY PROCESSING
…..AND SOME POINTS FROM RESEARCH
ABOUT SENSORY ISSUES IN AUTISM
Sensory issues long recognised as significant in autism
• Complex – nature of the issue oversimplified?
• May vary across domains in the same person at different
times /relationship to stress ?
• Noted in clinical observations and early studies
• e.g. Kanner 1943, Hermelin and O’Connor (1965), Rutter et
al (1977); Wing (1969, 1971); Schopler 1977
• Research confirms sensory differences in autistic subjects
• Most research in children
ABOUT SENSORY ISSUES IN AUTISM
Context
• Sensory problems almost universally reported but
until recently not part of diagnostic criteria
• Not included in ICD10 or DSM 4- but now in DSM V
Association with other problems
• Anxiety, Sensory Over -Responsivity and
Gastrointestinal problems (Mazurek et al 2013)
Related to the organisation of the brain
• Structural and functional brain differences
ABOUT SENSORY ISSUES IN AUTISM
• in practice, surprisingly little attention in terms of;
Assessment of sensory profile
recognition of difficulties e.g.
Sensory Processing Disorder
individual education and care plans
programme design and intervention
Environmental design
2% 14% 68% 14% 2%
Much less than most less than most similar to most more than most much more than most
NORMAL DISTRIBUTION AND THE SENSORY PROFILE
DUNN 1999
Low registration (high threshold) sensory sensitivity (low threshold)
General population
48% 0 % 52%
less or much less than most 2 + similar to most - 1 more or much more than most 2+
SENSORY PROFILE OF RESEARCH GROUP (N 40)
Low registration (high threshold) sensory sensitivity (low threshold)
McCreadie M and Mills R 2004
less or much less than most 2 + similar to most - 1 more or much more than most 2+
SD SENSORY PROFILE
Low registration (high threshold) sensory sensitivity (low threshold)
General population
Research (Autistic) group
McCreadie M and Mills R 2004
RESEARCH GROUP;
STANDARD DEVIATION IN POINTS : DUNN SENSORY PROFILE :
SENSORY DOMAINS (N 40)
SD pts
Cut off ----
McCreadie M and Mills R 2004
RESEARCH
Kern et al (2006) found that sensory abnormalities
• Differ markedly between autistic subjects and controls
• Are global in nature (affecting several modalities)
• Change with age (except for low threshold touch) - younger
subjects more severely affected
• Numerous studies have shown association with high levels of anxiety
and fear and sensory over -responsivity e.g. Goldsmith et al 2006;
Ben-Sasson et al 2009; Kinnealy and Fuiek 1999; Mazurek et al 2013;
Sharpley et al 2015
CONTEXT
About sensory issues
• In autism the presence of sensory problems should always be considered a
plausible explanation for
• Stress and anxiety
• Attentional problems (ADHD type symptoms)
• Repetitive behaviours
• Tiredness (due to sensory processing overload and sleep problems)
• Sleep problems (due to sensory overload)
• ‘challenging behaviour’ (in particular self -injury related to low
registration sensory profile)
• Require modifications to programme and environment
• Implications for application of physical interventions (Harris et al 2008)
sight
touch hearing
smell taste
Vestibular
(Inner ear)
Balance
Proprioceptive
(Muscles and joints)
Sense of body
in space
Outer and inner senses
(Shore 2004)
THE SENSES
Other related factors
Control of body temperature
Scotopic sensitivity
Relates to visual cortex
Light sensitivity
Problems with depth and distance perception
Synaesthesia
Input from one sense interrupted by another e.g. seeing
sound, tasting colour, hearing light etc.
THE SENSES
Smell
(olfactory system)
Observable behaviours
Hyper (Sensory sensitivity)
Sensation avoiding
• Overwhelmed
• Panic
• Refuses to enter particular environments e.g. toilets/ workplaces (air fresheners)
• Intolerance to people (perfumes- cigarette odours)
Hypo (Low registration)
Sensation seeking
• Ignores bad smells
• Eats inedible stuff
THE SENSES
Sight
(visual system)
Observable behaviours
Hyper (Sensory sensitivity)
Sensation avoiding
• Things appear brighter/ distorted
• Highly sensitive to light (particularly fluorescent light)
• Reacts violently to light
• Objects appear to jump around
• Insistence on gloom
Hypo (Low registration)
Sensation seeking
• Things appear darker
• Relies on peripheral vision
• Blurred vision
• Clumsiness
• Terror in dimly lit places
THE SENSES Touch
(tactile system)
Observable behaviours
Hyper (Sensory sensitivity)
Sensation avoiding
• Overwhelmed
• Avoids certain fabrics (e.g. wool)
• Refusal to wear clothes
• Avoids hair/nail cutting
• Reacts violently to touch - Even light touch may be painful
• BUT
• May enjoy and seek out firm consistent
• pressure/ touch
Hypo (Low registration)
Sensation seeking
• Low response to pain
• At risk of harm (burns)
• Clumsy/ Cannot handle tools
• Weak grasp
• Self-injury
THE SENSES
Sound
(auditory system)
Observable behaviours
Hyper (Sensory sensitivity)
Sensation avoiding
• Sound distorted or magnified
• Inability to filter/ discriminate/ habituate
• Acute painful hearing
• Overwhelmed/ Reacts violently
• Holds hands over/fingers in ears
• Disturbed or distracted by background (e.g. fridge)
• ‘Tunes out’
Hypo (Low registration)
Sensation seeking
• Sounds partially heard/ muffled
• No response to sound (may appear deaf)
• Enjoys/seeks loud noise
THE SENSES
Balance (vestibular system)
Observable behaviours
Hyper (Sensory sensitivity)
Sensation avoiding
• Excitability
• Fear of being moved
• Panic if feet leave floor
• Refusal to travel in vehicles
• Preference for sitting or lying
• Avoidance of all physical activity
• Marked reaction to movement (vomiting)
Hypo (Low registration)
Sensation seeking
• Hyperactivity/ Restlessness
• Rocking - Spinning –Twirling- Swinging
Jumping
• Hitting self
THE SENSES Body position
(proprioceptive system)
Behaviours
Hyper
(Sensory sensitivity)
Sensation avoiding
• Fidgety
• Difficulty with fine motor control/
manipulation of objects e g Laces, buttons
• Rigid body posture and movement- will turn
whole body around to look at something
• Poor or erratic sleep
Hypo
(Low registration)
Sensation seeking
• Poor body awareness -Crashes into things -
Falls over a lot
• Tires easily
• Props self up during activity
• Clumsy
• Chews clothing
OTHER RELATED FACTORS
Body temperature Observable behaviours
Hyper (Sensory sensitivity)
Sensation avoiding
• Active
• Thirsty
• Distractible
• Prefers light or no clothing
• Regardless of temperature /weather
Hypo (Low registration)
Sensation seeking
• Feels cold
• Insists on warm or heavy clothing
• Regardless of temperature /weather
OTHER RELATED FACTORS
Sensory processing (central auditory processing disorder)
Observable behaviours
Hyper
(Sensory sensitivity)
Sensation avoiding
• Thoughts jumbled - Excitable
• Poor concentration
• Unable to process language unless written down
• Unable to discriminate foreground from
background
• Interrupting/ speaking over people
• ‘ADHD type problems’
Hypo
(Low registration)
Sensation seeking
• Slow processing of language
• Getting stuck/ Repetitive thoughts
• If interrupted - having to go back to beginning
• Need for prompting
• Catatonic type states
OTHER RELATED FACTORS
Sensory integration Observable behaviours
Hyper
(Sensory sensitivity)
Sensation avoiding
• Too many inputs at once
• Unable to regulate
• Sensory overload ….‘meltdown’
• Problems with sequencing and
discrimination
• Over arousal
Hypo
(Low registration)
Sensation seeking
• No response to stimulation
• Unable to orient
• Variable response to different stimuli
OTHER RELATED FACTORS
Agnosia
• Not recognising objects
Prosopagnosis
• Not recognising faces
A view from the inside 1
Stephen Shore
Author of :
Beyond the Wall
Personal experiences
with
Autism and Asperger
Syndrome’
A PERSONAL VIEW FROM STEPHEN SHORE COMMON SENSORY REACTIONS
Sense Possible sensitivity
What it feels like Common reaction
sight Fluorescent lights The 60 Hz of the lights is visible. Feels like sitting in a room with a strobe light
Child may try to escape or have a tantrum
sound Birds tweeting Feels like birds beaks scraping the eardrum
Child may cover his ears
taste Avoidance of strong tasting food
Tastes like acid or other unpleasant strong taste
Child spits food out
smell perfume Feels like taking a deep breath from a Clorox bottle
Sneezing, burning eyes, other reactions, child tries to escape
touch Light touch Feels like touching an open wound or electric shock
Sensory defensiveness, brushing away light touch, jumping excessively at unexpected touch, seeking deep pressure
A PERSONAL VIEW FROM STEPHEN SHORE COMMON SENSORY REACTIONS (CONTINUED)
Sense Possible sensitivity
What it feels like Common reaction
Vestibular Low tolerance for activities involving movement
How most people would feel after spinning around at high speeds for a while. Dizziness or light headed feel
Avoidance of any movement involving sharp changes in direction or the feet leaving the ground
Clumsy at team sports
Seeking vestibular stimulation
Losing oneself in space-loss of co ordination
Attracted to roller coasters and similar rides
Proprioceptive Clumsy movements
Child like bull in a china shop
Body made of molasses- movement is tiring
Child appears fatigued-difficulty in modulating muscular force in everyday activities
THOUGHTS ON ASSESSMENT AND INTERVENTION
Poor evidence for sensory therapies as ‘curative’
e.g. AIT, Sensory integration
BUT
Emerging evidence in support of specific interventions (involving
changes to the environment and programme) to reduce
stressful or problematic behaviours and improve adaptation
and quality of life
WORKSHOP
Sensory issues in autism
- ideas around intervention
5 types of intervention
Establish/restore
Adapt/modify
Alter
Prevent
Create
Intervention Focus of intervention
Definition Example
Establish/ restore
Skills and abilities of the individual
Interventions that develop or improve skills
Expand individual engagement in taste /smell seeking behaviours – cookery class
Adapt/modify Task and environment
Interventions that change context or task demands
Reduce clutter in work area of person with sensory sensitivity
Alter Task and environment
Making best match between subject and context/task
Select stores that match a persons sensory processing preferences- e.g. large busy stores for sensory seeker
Well labelled for low registration
Quite organised – sensory sensitivity
Prevent Skills and abilities of the individual -Task and environment
Interventions that avert a potential problem
Clear itinerary for low registration – forward planning
Create Skills and abilities of the individual -Task and environment
Interventions that enhance task performance in the absence of an identified problem
In party or activity planning ensure spaces and activities that will meet a wide variety of sensory processing preferences
problem specifically factors possible intervention
Eating
Eating
Picky eater
Eats clothes/
rubbish
Sensitive
mouth?
Sensory
avoiding
Sensory
seeking?
• Soft food
• Wooden or familiar
eating utensils
•Incorporate strong
tasting foods in diet
e.g.
• Marmite
• Hard Pastilles
problem specifically factors Possible intervention
Smearing Handles and
smears faeces
Low
registration
Smell
Touch
Sensory
seeking?
Introduce similar
materials e.g.
• Clay
• Aromadough
• Paste
• Pungent aromas
e.g. ‘LUSH’
problem specifically factors possible intervention
Refuses
clothes
Strips off
Sensory
sensitivity
Sensory
avoiding
Other factors
Body temp
• Exclude irritant
fabrics e.g. wool,
nylon
• Use silk or very light
cotton next to skin
• Remove labels from
clothing
• Check seams
Sensory Wilbarger
brushing
problem specifically factors possible intervention
Sleep Problem in
falling asleep
Disturbed or
erratic sleep
pattern
Sensory
sensitivity
Sensory
avoiding
• Blackout blinds
• Sound insulation
• Bedding material
Avoid duvets
Weighted blankets?
‘Bed tent’
problem specifically factors possible intervention
Self injury Punches head Low
registration
Sensory
seeking
• Pressure on head
• e.g. Tight baseball
cap or headscarf
• Bandana
• Tight arm splints-
(not restraints)
• ‘Sensory diet’
Other approaches
Sensory diet
Routine activities designed to aid the regulation of the nervous
system to lower levels of arousal and serve as calming e.g.
• Horse riding
• Brushing (Wilbarger brush))
• Walking on rough terrain
• Carrying heavy rucksack
• Weighted body warmer
• Carpentry
• Bread making
• Housework - use of vacuum cleaner etc
CONCLUSION
Sensory issues
• Common in ASD but often ignored
• Across the spectrum
• Represent a significant barrier to learning and quality of life
Sensory ‘type’ important
• but individuals may exhibit different aspects of sensory processing at any
given time (e.g. seeking and avoidance)
‘Seen’ behaviours may be an attempt to regulate sensory imbalances
“I didn't eat tomatoes for over a year after a
cherry tomato had burst in my mouth while I
was eating it.
The sensory stimulation of having that small
piece of fruit explode in my mouth was too much
to bear and I was not going to take any chances
of it happening again”
Stephen Shore
Notice
This presentation may not be reproduced in whole or in
part without permission
Acknowledgements and thanks
Mary Coleman
Winnie Dunn
Gunilla Gerland
Christopher Gillberg
Jacqui Jackson
Janet Kern
Catherine Lord
Michael McCreadie
Nicci Paine
Chris Sharpley
Stephen Shore
The rockinautismmom
Donna Williams
Lorna Wing
