Intellectual Disabilities

Severe and profound

By
Sofia Khaliq
Naseem Fozia
 DSM chart
Neurodevelopment
Disorders

Attention- Other
Intellectual Communication Autism Spectrum Specific Learning
Deficit/Hyperactivi Motor Disorders Neurodevelopmen
Disabilities Disorder Disorder Disorder
ty Disorder tal Disorders

Intellectual
Developmental
Disorder

Global
Developmental
Delay

Unspecified
Intellectual
Disability
 Intellectual Disability

(Intellectual Developmental Disorder) is a disorder with onset

during the developmental period that includes both intellectual and
adaptive functioning deficits in conceptual, social, and practical
domains
DSM-5 : Intellectual disability
• Severity level • Domains
• Mild • Conceptual domain
• Moderate • Social domain
• Severe • Practical domain
• Profound
Conceptual domain Social domain Practical domain

Language and literacy Interaction Dressing

Self-direction Communication Bathing
Value/meanings Expending friend circle Washing
Money Gathering Eating
Abstract thinking Communicating and interacting Arranging thing
Imagination and relating (W.r.t situation) House chores
Orientation of time and place Taking responsibilities Cooking
Intellectual Disabilities
(Severe)
Severity Conceptual domain Social domain Practical domain
Mild - - -
Moderate - - -
Severe • Attainment of conceptual • Spoken language is quite limited • Required support for all
skills is limited • single words or phrases activities of daily life
• Generally has little • Only . • All the time supervision
understanding of written • Concept of present, needed
language or of concepts • Language is used for • Can not make responsible
involving communication more than for decisions regarding well-
• Numbers, explanation. being of self or others.
• Time • Simple speech and gestural • Adults: participation in tasks
• Money communication and at home, recreation, and
• Need extensive supports for understanding. work requires ongoing
problem solving throughout • Relationships with family support and assistance.
life members and significant others • Long-term teaching and
are a source of pleasure and ongoing support
help. • Maladaptive behavior,
including self-injury is present
in a significant minority.

Profound - - -
 Case example
Article: Case study: identification of anxiety and subsequent intervention in
an adolescent male with autism, Severe Intellectual Disability and self-
injurious behavior
Journal: Journal of Intellectual & Developmental Disability (Taylor & Francis)
Case No.: XYZ
Age: 16 years
Gender: male
Problem: Severe Intellectual Disability and Autism Spectrum Disorder
Case example (ASD and ID)
• 37-45% of individuals with ASD are estimated to have a co-occurring ID
• Self injury behavior
• Challenging behavior
• Daily life impacted
• Only two studies reporting prevalence of anxiety disorders in individuals with co-
occurring ASD and ID
• The DSM-specified anxiety disorders were more common in children with average or
higher IQs, while the ASD-specific anxieties were not related to intellectual abilities.
• Severe/profound ID the published case studies have primarily focused on
• Behavioral treatment of problematic avoidance
• Targeting phobic avoidance of specific situations or stimuli
Case example
Diagnosis
• problematic behaviors and impulsivity
• High anxiety
• a previous, depressive episode, during which his anxiety problems
had worsened
• previously reported that behavioral management practices involving
use of physical restraint may lead to development of post-traumatic
stress disorder
 Case example
Severity Conceptual domain
Severe • limited verbal language
skills
• using single- or two-word
utterances
• echolalia, repeating
phrases
• he did not have the
verbal language skills to
disclose his mental state
during these episodes,
Social domain
• attempting to kick, bite or hit
caregivers
• preschool years with frequent
wrist biting, hitting his face with
his fist
• he had an episode of passivity
and social withdrawal
• he mostly stayed inside his
apartment
Practical domain
• full-time care when he was 10
and into a new care home at
14.
• caregivers lacking other options
to limit physical injury
• referral, episodes of SIB had
reached a level of severity that
limited Philip’s activities
Management plan
• 7 goals -intervention:
• (1) changed management of SIB episodes to encompass the contribution of
anxiety in these episodes and focusing on reducing anxiety throughout episodes,
• (2) adapting his care to his assumed levels of anxiety at any time to aid him in
reducing his experienced anxiety,
• (3) facilitate development of alternative behavioral strategies for Philip when he
experienced anxiety,
• (4) aiding all staff involved in Philip’s care to maintain low arousal throughout
and outside of episodes involving SIB,
• (5) reinforce and validate any verbal communication from Philip,
• (6) facilitate positive activities,
• (7) reduce uncertainty by aiding Philip in experiencing his days as structured and
predictable
Intellectual Disabilities
(profound)
Profound Intellectual Disability
• Having a profound ID means that it is difficult for the person to
learn new things. It means it is extremely difficult for them to
concentrate, plan, problem solve, and remember
 Example of profound
intellectual disability
• The definition of profound is being deep, having intellectual depth or
being intensely felt. An example of profound is a scientific equation
proving God's existence.
 Behavioral issues of profound intellectual
disability
• aggression
• dependency
• withdrawal from social activities
• attention-seeking behavior
• depression during adolescent and teen years
• lack of impulse control
• passivity
• tendency toward self-injury
• stubbornness
• low self-esteem
• low tolerance for frustration
• psychotic disorders
• difficulty paying attention
Profound intellectual disability
• Symptoms of profound ID include:
• Inability to understand or comply with requests or instructions
• possible immobility
• incontinence
• very basic nonverbal communication
• inability to care for their own needs independently
• the need of constant help and supervision
• having an IQ of less than 20
Conceptual domain
• The conceptual domain includes skills in language, reading,
writing, math, reasoning,
• Knowledge, and memory.
Social domain
• The social domain refers to empathy, social judgment,
interpersonal communication skills, the
• ability to make and retain friendships, and similar capacities.
Practical domain
• The practical domain centers on self-management in areas such as
personal care, job
• responsibilities, money management, recreation, and organizing
school and work tasks.
For example, children with intellectual disability may not:

• sit up, crawl, or walk later than other children.

• learn to talk later, or have trouble speaking.
• find it hard to remember things.
• have trouble understanding social rules.
• have trouble seeing the results of their actions.
• have trouble solving problems.
Example case study
People with intellectual disability are infrequently involved in end of
life decisions, and people with severe or profound intellectual disability
even less so. Supported decision making (SDM) is one process that has
potential to assist in end of life decisions for these groups. . One case
study focused on supporting the
decisions of a person at their end of life and provides insights into the
application of SDM to this context
• The role of a person with severe or profound intellectual disability in
this supported decision-making dynamic is to express will and
preference, intentionally and unintentionally, using a range of
modalities
(e.g. behaviour, vocalization, vocal pitch, muscle tone, facial expression,
eye movement, self-harm, breath, unintentional physiological
functions). The role of supporters within this dynamic is to respond to
this expression of will and preference by acknowledging, interpreting
Example case study
Profound intellectual disable adults: 5
1 woman 4men
Problems: non verbal behavior
Such as facial expressions . Gesture. Vocalization and eye gaze to
express themselves.

They have difficulty understanding formal Communication such as

sign language speech pictures photographs Or written text
Decision making
• It is important for those providing support with decision making
to understand that knowledge regarding a person’s history and life
story is not just acquired through relationship longevity. Within the
context of this study, the sharing of historical stories, images and
video about the person being supported, by those who had known
them for a long time, across multiple areas of their life, was found
to enhance other supporters’ knowledge of the person.
Study aim
• Firstly, the researchers aimed to characterize supported decision
making for people with profound intellectual disability.
• Secondly, focusing on the role of supporter, the researchers aimed
to identify the processes, enablers and barriers to supported
decision making for people With profound intellectual disability to
understand how it can be fostered in practice.
Result
• An analysis of the study’s data evidenced that supporter
responsiveness to the expression of will and
preference of those they support is a multifaceted activity, made up
of a number of tasks. These tasks include acknowledging,
interpreting and acting on the expression of will and preference of
those they
Support.