Intellectual Disability

and Positive Behaviour

Support
Rachel Hughes.
Psychologist, Minda Inc

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Overview
Intellectual Disability vs. Mental
Illness vs. Autism Spectrum Disorder
Behaviours of Concern
Case Formulation
Assessing the underlying reasons and
functions for Behaviours of Concern

Generic Preventative Strategies

Generic Reactive Strategies: Stress
Behaviour Cycle
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What is Intellectual Disability

(intellectual developmental disorder)?

Intellectual Disability
(intellectual developmental disorder)

A neurodevelopmental disorder where the essential

features are impairments in both
intellectual functioning, and
in adaptive behaviour as expressed in conceptual,
social, and practical adaptive skills.

This disability originates during the developmental

period.
(The various levels of severity are defined on the basis of adaptive
functioning, and not on IQ scores, because it is adaptive functioning
that determines the level of supports required.)

(DSM-5;

Distribution Curve

(Intellectual functioning)

Adaptive Behaviour
Adaptive Behaviour includes the age, gender, and
socioculturally appropriate behaviours necessary for people
to live independently and to function safely and
appropriately in daily life.
Adaptive behaviours include;
Conceptual skills:
language and literacy; money, time, and number concepts;
and selfdirection, learning from experience, judgement, etc.
Social skills:
interpersonal skills, social responsibility, self-esteem, social
problem solving, and the ability to follow rules/obey laws
and to avoid being victimized.
Practical skills:
activities of daily living (personal care), occupational skills,
healthcare, travel/transportation, schedules/routines, safety,
use of money, use of the telephone, academic learning.

What is Mental Illness (mental health issues)?

Differences MI & ID
Mental Illness

Intellectual Disability

General term referring to a

group of illnesses which cause
disruption of a persons
behaviour, emotions or thinking

Impairment in intellectual and

adaptive functioning global

Onset commonly late

adolescence/ early adulthood

Onset during developmental

period

Episodic

Lifelong

Treatable as an illness

Not an illness

Full range of IQ

IQ < 70
Can an individual have both?

Dual Disability
Dual Disability is the term used to
describe the coexistence of
intellectual disability and mental
illness.

Other terms include;

Dual Diagnosis
Co occurring MI-ID
Co existing disorders

What is Autism Spectrum Disorder (ASD)?

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Autism Spectrum Disorder (ASD)

A neurodevelopmental disorder where the
essential features are impairments in1)Social communication and social interaction
across multiple contexts
2)Restrictive, repetitive patterns of behaviour,
interests, or activities.
Symptoms originate during the developmental
period and limit or impair everyday functioning.

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Can an individual have

ASD, Intellectual Disability,
Mental Illness, and?

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What is Behaviour?

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What is Behaviour?
Behaviour is
a person
does that is observable
and measurable.

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Behaviour of Concern
Culturally abnormal behaviours of such intensity,
frequency or duration that the physical safety of the
person or others is placed in serious jeopardy or
behaviour which is likely to seriously limit or deny access
to the use of ordinary community facilities.

(Emerson et al 2001).

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Behaviour Continuum

not of

of concern

concern

behaviour

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Behaviours of Concern
It is crucial to investigate the underlying reasons behind a
behaviour of concern as;
There is always a reason.
We are more likely to end up with long-term, sustainable,
helpful behaviour change rather than a band-aid solution
or symptom substitution.
Focusing on the reasons helps to separate the person from
their behaviour.
It helps to direct the focus to the potential build-up of
multiple long and short-term reasons- not just the straw
that broke the camels back.
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Iceberg Model for Reasons

Underlying Behaviour

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Individual, Social and

Environmental influences

Individ
ual

Socia
l

Environme
ntal
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Social Factors

Relationships (family, extended family, friends, support workers,

teachers, persons involved with any extra curricular activities/
sports, employment, etc)

Grief and Loss / Separation Anxiety

Lack of Opportunity / Choice

Negative Stereotyping/ Stigma

Social media

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Environmental Factors

Levels of Stimulation

(i.e., temperature, noise level, crowding, etc)

Physical Aspects
(building size, location, access to community facilities/
open spaces, natural light, privacy, clutter)

Predictability and Consistency

Teacher/ Staff Expectation
Access to Support
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Individual Factors
Physiological
Pain, infections, pre-existing illness, new illness, discomfort,
hungry, tired, headache*
Communication
Preverbal*, nonverbal or verbal usage of assistive communication
tools. While verbal information (speech) disappears as soon as it
is said, visuals have staying power and can be available as long
as the person requires it.
Medication
Side-effects, interaction with other medication, tolerance, noncompliance, not at therapeutic dose
Language and Culture

Individual Factors

Level of Intellectual Disability

Mild: Live relatively independently with support in some areas (i.e.,

budgeting)
Moderate: Live in supported accommodation, attended special schools
Severe: Support with all aspects of daily living and self-care.
Profound : Tend to have multiple disabilities, non-verbal

Mental Illness

(Anxiety, Depression, Bi-polar, Schizophrenia)

Sensory Needs

Differences in interpreting, processing and responding to information from our 7

senses (touch, movement, deep pressure, smell, taste, vision, hearing)

Life History
Disordered Attachment
Complex Childhood Trauma
Trauma: An emotional or psychological injury, usually resulting from
an extremely stressful or upsetting life experience.

Individual Factors

The image on the left shows a CT scan of a healthy three year old with
an average head size. The image on the right is also a CT scan of a
three year old but not developed to age expected norms. What could
explain such a severe difference between the two children?

Individual Factors- Trauma and Failure to

Thrive

This shows the major impact that experience and interpersonal

interaction
(or lack of interactions), on a childs developing brain.*

Individual Factors-Complex Childhood

Small amounts of regular predictable stress is necessary in childhoodTrauma
to build
resilience.

Overactive Stress Response System:

Trauma Symptoms often start as an
adaptive response to a highly stressful
situation (i.e., it enables the child to
survive) but over time they become
maladaptive and unhelpful.
For example, aggressive behaviors may
have originally started to help the child
protect themselves. Although the child
may now be safe, their overactive stress
response system has been turned on for
such a prolonged period of time, it is now
difficult to turn off.

Children remain in a prolonged Fight, Flight or Freeze survival response.

States become Traits*

Individual Factors- Trauma

Like all of us, children and adults with history of complex trauma feel safe
and reassured when people behave in predictable and expected ways.
As they expect caregivers to be angry and threatening, or un-dependent
and rejecting, they often behave in a manner (i.e., display behaviours of
concern) that precipitates similar behaviour in their new caregivers, thus
confirming their belief systems and reinforcing the cycle.

Functions of Behaviour
Whenever a behaviour occurs, it is
important to consider its purpose, or what
is most often called its Function.
Behaviour generally serves one of several
functions.

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Functions of Behaviour
What may be the functions behind
the following?

Communication Function
ALL behaviour has a communicative function for the person.
People with difficulties with communication, are much more likely to
rely on their behaviour to communicate.
One parent of child with ASD stated;

I remember how he would throw himself to the floor when he was

thirsty. The speech pathologist taught me how to take his little hand and
shape his fingers as a point, then lead his hand to touch the cupWhen
he pointed, he got what he wanted. He started pointing. He was learning
to ask. (www.autismspeaks.org)

Visual supports are another communication alternative to behaviour of

concerns and can include Schedules, Calendars, Social Stories or
Visual rules.

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Activity
The Premise of Positive Behaviour Support is determining the
underlying reasons/function of a behaviour.
Think of a child you are currently working with or have worked
with in the past.
Individual
Write down a behavior of concern they have/had
Needs
List some of the factors you are
aware of that might influence
their behaviour;

Environmental factors
Social factors
Individual factors, and
Functions of the behaviour

Environmental
Needs

Social
Needs

FUNCTIONS
Please de-identify child to protect confidentiality

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Positive and Preventive Approaches

Even though I will be discussing some general approaches. It is
important to keep in mind that every Individual is Different. Do not
use a blanket approach.
If youve met one person with ASD, youve met one
person with ASD (Anon.)
The term Autism Spectrum Disorder (ASD) reflects the fact that no
two people with ASD are alike. Even though each individual with
ASD has difficulties in the areas of communication, socialisation and
flexibility of thought, each has a unique combination of
characteristics and so may seem quite different.

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When behaviour meets a need

(function) it is unlikely to change
unless the person learns a different way to
meet that need.
Positive Behaviour Support aims to assist a person to reduce behaviours of
concern and to increase the person's quality of life through teaching a person
new skills and adjusting their environment to meet the underlying function of
the behaviour in a more helpful way.

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Validate Emotion, not Behaviour

Essentially the child is seeking emotional
support in an unconstructive way.
There is always a solution. Lets calm and we can
work it out.
Maybe youre hurt he said no - its normal to feel that
way. Lets talk about it and what we can do about it
Its okay to feel frustrated but its not okay to hit.
Lets work out what would be a more helpful way
of responding next time.

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Positive & Preventative Strategies

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Positive & Preventative Strategies

Name and Tame Emotions: Learning to identify emotions is the first
step towards learning to regulate emotions (i.e., name and tame).
Identify, name and teach child their emotions. Even when child is in a
good place, reflect Thomas is calm, Thomas is happy, or
Thomas is relaxing.

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Positive & Preventative Strategies

Meeting peoples needs by increasing their abilities and options can result
in the person having pride in what they can do and a decrease in
behaviours of concern.
Strategies include:
Celebrate success:
Give specific positive feedback.
Descriptive Praise: Ensure positive feedback is given with more
emotion than negative feedback.
Listen:
Where possible, work out what the person is telling you from their
choices and actions.
Validate the persons concerns and emotions.

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Managing Change
Transitions and changes to people with ASD are
like kryptonite to Superman.
It is neither possible nor productive to avoid change
completely. Fortunately, it is unpredictable change that
is likely to cause the most distress. As such, the child
should continue to be informed of what is going to
happen at any time, have changes explained, make
changes on daily schedule, and be provided with
plenty of reassurance.

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Teaching self-regulation

Self-regulation only arises once co-regulation occurs.

Remember learning through the developmental stages
occurs via;
1) DO FOR
2) DO WITH (co-regulate)
3) DO BY SELF (self-regulate)

Cognition (Top Down Processing) accounts for only a small

amount of regulation. Most of regulation occurs outside of
consciousness.
Top Down processing (Brain then Body)
Bottom Up processing (Body then Brain)
Exercise/Movement based
Deep Pressure-Sensory based. OTs are the vehicle for change
Mindfulness/Relaxation
RELATIONSHIPS/CONNECTEDNESS
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Positive & Preventative Strategies

Provide clear, consistent and continuous expectations:
How could you help the person understand the expectations?
First [this] then [that] FIRST spelling, THEN hometime
FIRSTTHEN strategy can also help to not reinforce
bad behaviour (i.e., giving Thomas iPad to stop him
pinching, etc). Instead, be firm and calm (i.e., Thomas
STOP - no pinching ). Prompt Thomas FIRST calm,
THEN iPad. This will increase likelihood of calm
behaviours being reinforced.
First [this]next [this]then [that]
Safe hands (rather than no, hands down etc) it also
tells the person what you want.
We talk about that at Dinner can lead into When do we
talk about that? (onus on the person).
Person may also adopt these phrases to regulate their own
behaviour in future.
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Positive & Preventative Strategies

Set the person up for success:
Make tasks and activities easy to succeed
Provide small challenges that build on the
persons strengths.
Assist the person to understand what you want to
communicate to them by using:
Communication aids such as gestures, photos,
DVDs and experience.
Photos are particularly helpful for people with ASD who
can have deficit in imaginative play

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Positive & Preventative Strategies

Social Stories

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Positive & Preventative

Strategies
Diversion, Redirection and Distractions:
Avoid saying NO and DONT:
Dont go in other rooms etc into the positive Ask before
entering other rooms.
If just say No, you can leave an information vacuum (which the
child is likely to fill with their own strategy). Need to also fill the
Vacuum with what child could being doing instead.
Can mean no but say yes. For example, Yes, and first well
do this or Yes, lets look at the schedule and see when this is
going to happen.
Divert the persons attention, engage them in another task, how
else can you help that person meet their need or ask for
something?
Model appropriate behaviour:
Actions speak louder than words
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Difficulties asking for help

Joe sometimes becomes upset when he is asked to do things. He is very

sensitive to losing face and asking for help is currently not within his
repertoire of skills.
Communication with Joe is less likely to be distressing if it is respectful and
collaborative. As Joe questions like What can we do about this?
Give choices. Joe is much more likely to carry out a request if it is in the form of a twoway request Joe, would you like to do a or b?
Joe responds well to praise and has often reacted badly to even gentle admonishment
(correction) or what he perceives as criticism. Each day, there should be at least 3
times more incidents of praise than correction (i.e., compliment sandwich).
Speak slowly and use concrete language. Joe is not likely to indicate if he does not
understand, and his confusion often adds to the perceived pressure he is under. Pause
after each sentence to allow him time for processing.

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Punishment
Punishment refers to something that happens after a behaviour that reduces
(or attempts to reduce) the likelihood of that behaviour occurring again in
the future.
In addition to being difficult to implement effectively, punishment more
importantly also results in the following;
Any behaviour changes that result from punishment are often temporary
and the behaviour is likely to reappear after the punishment is withdrawn!
Punishment does not offer any information about more appropriate or
desired behaviours.
While people might be learning to not perform certain actions, they are
not learning anything about what they should be doing.
Punishment can invoke unintended and undesirable consequences such
as other behaviours of concern, or negative responses such as fear, anger
and resentment.
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Activity
Refer back to the previous activity and
answer the following questions:
1. What was the behaviour of concern?
2. What was the underlying function/reasons/purpose
of the behaviour of concern?
3. How can the environment be improved to prevent
the behaviour of concern?
4. What replacement skills and alternatives to problem
behaviour can be taught?
5. How can the contingencies be adjusted (increase
reinforcement for desired behaviours and reduce pay
offs for problem behaviour)?
Again, please de-identify child to protect confidentiality

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Responding to Aggressive Behaviour

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However well staff anticipate the needs of a

person, and plan positive strategies, there
is always a possibility of behaviours of
concern escalating.
At times, even when preventive and positive
approaches based on good assessments
are used, there are occasions
when behaviour intensifies
and people are put at
risk of injury.

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The Stress Behaviour Cycle

Crisis

Escalation

Recovery

Trigger/s

Optimal
Functioning

Optimal
Functioning

Post Crisis
Depression

After an incident, it is important that staff debrief and evaluate their

actions, including reflection on what you did, what worked, what didnt, and
what you could do next time.
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The Stress Behaviour Cycle

Optimal
Functioning

Opportunities to implement positive and preventative strategies.

More receptive to information and ability to process this information.
Opportunities for learning and engagement.
Implement Positive and Preventative strategies at this stage

Trigger/s

Perceived threat by the person.

It is not the experience that matters, but the meaning behind the
experience for that person.
Antecedent management: Be aware of narrowing of world by
avoiding all triggers.
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The Stress Behaviour Cycle

Escalation

Fight, flight or freeze response initiating.

Adrenaline increasing.
Tunnel vision.
Crisis

Fight, Flight, or Freeze (survival response)

Meltdown in ASD
This level of energy cannot be maintained indefinitely.
Staff focus on safety and minimising harm to self and others.
Brain shuts down higher, more complex areas defer to instinct
(basic/ regulatory areas) to effectively respond to threat.
Reactive not a reachable or teachable moment.
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The Stress Behaviour Cycle

Crisis

Crisis Communication
Keep in mind that during periods of extreme stress (crisis) very little of what is
said will be processed.
Use self control and remain calm.
Use the persons name reassuringly.
Offer to help - ask what is wrong.
Use easy to understand language and short, simple sentences.
Use a calm yet confident tone of voice.

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The Stress Behaviour Cycle

Crisis

Starting sentences with I is less threatening and

confrontational that starting with YOU
(e.g., I need the knife down rather than You need to stop).
Rule of 5
No more than 5 words, and
Words should be limited to 5 letters or less
(e.g., Sam, put the chair down).

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The Stress Behaviour Cycle

Recovery

De- escalation
Calming, using less energy
Brain decreasing vigilance.
Post Crisis
Depression

Attempts may be made by the person to repair the relationship.

Person may become apologetic.
Using less energy than optimal functioning.
Exhaustion Crisis is physically and emotionally draining
Optimal
Functioning

Return to optimal functioning; positive and preventative strategies,

receptive to information, engaging, learning.
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Basic Responses
Refer to Positive Behaviour Support Plan (PBSP)
Become familiar with childs PBSP for individualised strategies

Intervene Early
Respond as quickly as possible to any increase in agitation. Preventing
an incident from escalating is preferred than managing the
situation afterwards. Be aware of situations which are likely to
trigger a behaviour of concern.

Remain Calm and Exercise self-control

Try to appear calm and confident even if you do not feel it.

Call for Assistance

Call for help from a other staff or someone who knows the person well
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If prevention has not

worked
Protect yourself and then others
Remove everyone out of the area
Call for assistance

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