LIVING WITH AUTISM.. THOUGHTS ON THE SENSORY WORLD - Richard Mills Research Autism July 2015
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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 problematicAN 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 childrenABOUT 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 differencesABOUT 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 designNORMAL DISTRIBUTION AND THE SENSORY PROFILE
DUNN 1999
General population
2% 14% 68% 14% 2%
Much less than most less than most similar to most more than most much more than most
Low registration (high threshold) sensory sensitivity (low threshold)SENSORY PROFILE OF RESEARCH GROUP (N 40)
48% 0% 52%
less or much less than most 2 + similar to most - 1 more or much more than most 2+
Low registration (high threshold) sensory sensitivity (low threshold)
McCreadie M and Mills R 2004SD SENSORY PROFILE
Research (Autistic) group
General population
less or much less than most 2 + similar to most - 1 more or much more than most 2+
Low registration (high threshold) sensory sensitivity (low threshold)
McCreadie M and Mills R 2004RESEARCH GROUP;
STANDARD DEVIATION IN POINTS : DUNN SENSORY PROFILE :
SENSORY DOMAINS (N 40)
Cut off ----
SD pts
McCreadie M and Mills R 2004RESEARCH 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)Outer and inner senses
(Shore 2004)
sight
hearing Vestibular touch
(Inner ear)
Balance
Proprioceptive
(Muscles and joints)
Sense of body
in space
smell tasteTHE 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 Observable behaviours
(olfactory system)
Hyper • Overwhelmed
(Sensory sensitivity) • Panic
Sensation avoiding • Refuses to enter particular
environments e.g. toilets/
workplaces (air fresheners)
• Intolerance to people (perfumes-
cigarette odours)
Hypo • Ignores bad smells
(Low registration) • Eats inedible stuff
Sensation seekingTHE SENSES
Sight Observable behaviours
(visual system)
Hyper • Things appear brighter/ distorted
• Highly sensitive to light (particularly
(Sensory sensitivity)
fluorescent light)
Sensation avoiding
• Reacts violently to light
• Objects appear to jump around
• Insistence on gloom
Hypo • Things appear darker
• Relies on peripheral vision
(Low registration)
• Blurred vision
Sensation seeking
• Clumsiness
• Terror in dimly lit placesTHE SENSES
Touch Observable behaviours
(tactile system)
Hyper • Overwhelmed
• Avoids certain fabrics (e.g. wool)
(Sensory sensitivity)
Sensation avoiding • 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 response to pain
• At risk of harm (burns)
(Low registration)
Sensation seeking • Clumsy/ Cannot handle tools
• Weak grasp
• Self-injuryTHE SENSES
Sound Observable behaviours
(auditory system)
Hyper • Sound distorted or magnified
• Inability to filter/ discriminate/
(Sensory sensitivity)
habituate
Sensation avoiding
• Acute painful hearing
• Overwhelmed/ Reacts violently
• Holds hands over/fingers in ears
• Disturbed or distracted by background
(e.g. fridge)
• ‘Tunes out’
Hypo • Sounds partially heard/ muffled
• No response to sound (may appear
(Low registration)
deaf)
Sensation seeking
• Enjoys/seeks loud noiseTHE SENSES
Balance Observable behaviours
(vestibular system)
Hyper • Excitability
• Fear of being moved
(Sensory sensitivity)
Sensation avoiding • 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 • Hyperactivity/ Restlessness
• Rocking - Spinning –Twirling- Swinging
(Low registration)
Sensation seeking Jumping
• Hitting selfTHE SENSES
Body position Behaviours
(proprioceptive
system)
• Fidgety
Hyper
• Difficulty with fine motor control/
(Sensory sensitivity)
manipulation of objects e g Laces, buttons
Sensation avoiding
• Rigid body posture and movement- will turn
whole body around to look at something
• Poor or erratic sleep
• Poor body awareness -Crashes into things -
Hypo
Falls over a lot
(Low registration)
• Tires easily
Sensation seeking
• Props self up during activity
• Clumsy
• Chews clothingOTHER RELATED FACTORS
Body temperature Observable behaviours
• Active
Hyper
• Thirsty
(Sensory sensitivity)
Sensation avoiding • Distractible
• Prefers light or no clothing
• Regardless of temperature /weather
• Feels cold
Hypo
• Insists on warm or heavy clothing
(Low registration)
Sensation seeking • Regardless of temperature /weatherOTHER RELATED FACTORS
Sensory processing Observable behaviours
(central auditory
processing disorder)
Hyper • Thoughts jumbled - Excitable
(Sensory sensitivity) • Poor concentration
Sensation avoiding • Unable to process language unless written down
• Unable to discriminate foreground from
background
• Interrupting/ speaking over people
• ‘ADHD type problems’
Hypo • Slow processing of language
(Low registration) • Getting stuck/ Repetitive thoughts
Sensation seeking • If interrupted - having to go back to beginning
• Need for prompting
• Catatonic type statesOTHER RELATED FACTORS
Sensory integration Observable behaviours
Hyper • Too many inputs at once
(Sensory sensitivity)
• Unable to regulate
Sensation avoiding
• Sensory overload ….‘meltdown’
• Problems with sequencing and
discrimination
• Over arousal
Hypo • No response to stimulation
(Low registration)
• Unable to orient
Sensation seeking
• Variable response to different stimuliOTHER 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 What it feels like Common reaction
sensitivity
sight Fluorescent lights The 60 Hz of the lights is Child may try to escape
visible. Feels like sitting in a or have a tantrum
room with a strobe light
sound Birds tweeting Feels like birds beaks Child may cover his ears
scraping the eardrum
taste Avoidance of strong Tastes like acid or other Child spits food out
tasting food unpleasant strong taste
smell perfume Feels like taking a deep Sneezing, burning eyes,
breath from a Clorox bottle other reactions, child
tries to escape
touch Light touch Feels like touching an open Sensory defensiveness,
wound or electric shock brushing away light
touch, jumping
excessively at
unexpected touch,
seeking deep pressureA PERSONAL VIEW FROM STEPHEN SHORE
COMMON SENSORY REACTIONS (CONTINUED)
Sense Possible What it feels like Common reaction
sensitivity
Vestibular Low tolerance for How most people Avoidance of any
activities would feel after movement involving
involving spinning around at sharp changes in
movement high speeds for a direction or the feet
while. Dizziness or leaving the ground
light headed feel Clumsy at team
sports
Seeking Losing oneself in Attracted to roller
vestibular space-loss of co coasters and similar
stimulation ordination rides
Proprioceptive Clumsy Body made of Child appears
movements molasses- movement fatigued-difficulty in
Child like bull in a is tiring modulating muscular
china shop force in everyday
activitiesTHOUGHTS 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 lifeWORKSHOP Sensory issues in autism - ideas around intervention
5 types of intervention Establish/restore Adapt/modify Alter Prevent Create
Intervention Focus of Definition Example
intervention
Establish/ Skills and abilities of Interventions that Expand individual
restore the individual develop or improve engagement in taste /smell
skills seeking behaviours –
cookery class
Adapt/modify Task and Interventions that Reduce clutter in work area
environment change context or task of person with sensory
demands sensitivity
Alter Task and Making best match Select stores that match a
environment between subject and persons sensory processing
context/task preferences- e.g. large busy
stores for sensory seeker
Well labelled for low
registration
Quite organised – sensory
sensitivity
Prevent Skills and abilities of Interventions that Clear itinerary for low
the individual -Task avert a potential registration – forward
and environment problem planning
Create Skills and abilities of Interventions that In party or activity planning
the individual -Task enhance task ensure spaces and activities
and environment performance in the that will meet a wide variety
absence of an of sensory processing
identified problem preferencesproblem specifically factors possible
intervention
Eating Picky eater Sensitive • Soft food
mouth? • Wooden or familiar
Sensory eating utensils
avoiding
Eating Eats clothes/ Sensory •Incorporate strong
rubbish seeking? tasting foods in diet
e.g.
• Marmite
• Hard Pastillesproblem specifically factors Possible intervention
Smearing Handles and Low Introduce similar
smears faeces registration materials e.g.
Smell • Clay
Touch • Aromadough
Sensory • Paste
seeking? • Pungent aromas
e.g. ‘LUSH’problem specifically factors possible intervention
Refuses Strips off Sensory • Exclude irritant
clothes sensitivity fabrics e.g. wool,
nylon
Sensory • Use silk or very light
avoiding cotton next to skin
• Remove labels from
Other factors clothing
Body temp • Check seams
Sensory Wilbarger
brushingproblem specifically factors possible intervention
Sleep Problem in Sensory • Blackout blinds
falling asleep sensitivity • Sound insulation
Sensory • Bedding material
Disturbed or avoiding Avoid duvets
erratic sleep Weighted blankets?
pattern
‘Bed tent’problem specifically factors possible intervention
Self injury Punches head Low • Pressure on head
registration • e.g. Tight baseball
cap or headscarf
Sensory • Bandana
seeking • 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
END RICHARD.MILLS@RESEARCHAUTISM.NET
Notice
This presentation may not be reproduced in whole or in
part without permissionAcknowledgements 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
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