Assessment of Mental Health
Problems in Children and
Adolescents with Intellectual
Disability
Dr Alison Dunkerley
The Children and Their Families
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Be boys
Have poor general health
Been exposed to a greater variety of adverse life events
Brought up by a single parent
Live in poverty
Live in a poorly functioning family
Have mother who is in poorer health
Have mother who has mental health needs
Family less educational attainments/more unemployment
Have fewer friends
Problems of Families
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Coming to terms
Sleep
Insecure attachment patterns – relationships
Appropriate strategies
Cultural attitude to disability
Excluded from mainstream services
Epidemiology
• Emotional & behavioural disorders more
common (Rutter et al, 1970)
• Emerson & Hatton, 2007, demonstrated
higher rates of social disadvantage &
increased risk of all psychiatric disorders
• A third experience MH problems compared
with 11%who have only physical disability/
chronic illness & 8% in general population
Risk Factors for MI
• Demographic Factors
– Male gender, increasing age, low socio-economic
status, reduced household income, living with one
biological parent, living in an institution
• Adaptive Skills
– Poor social/daily living/communication skills
• Biological Factors
– Decreasing IQ, epilepsy, specific genetic syndrome
Prevalence of MI
• Dekker & Koot (2003), 474 children, 25.1%
disruptive behaviour, 21.9% anxiety disorder,
4.4% mood disorder
• Emerson & Hatton (2007), 18,415 children,
‘children with ID accounted for 14% of all
British children with a diagnosable psychiatric
disorder’, 36% with LD have diagnosable
psychiatric disorder
The Children’s Mental Health
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33 times more likely to have an ASD
8 times more likely to have ADHD
6 times more likely to have conduct disorder
4 times more likely to have emotional disorder
1.7 times more likely to have depressive
disorder
Common Genetic Disorders
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Prader-Willi syndrome – mood lability, sleep
Williams syndrome – superficial language
Fragile X syndrome – aggression, anxiety
Rett syndrome – hyperventilation, anxiety
Down syndrome – humorous, behaviour
Foetal Alcohol syndrome – executive function
Velo-cardio-facial syndrome – psychosis
History Taking
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Information collected from different sources
Onset of behaviour ? Related to ppt events
Elicit details to support (or refute) diagnosis
Family history – Ld, epilepsy, psychiatric dx
Developmental history – birth, milestones
Personal history – housing, education, EHCP
Risk & forensic history – self & others
Mental State Examination
• Child-friendly setting with toys, books etc
• School visits are important
– level of support, number in class, ability
• Enquire about emotionally neutral topics
• Sufficient time allowed, longer to understand
• Observe child
– Distractible, poor attention span, impulsivity
– Impaired social communication, hypersociability
Standarised Assessment
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WISC-IV generates profile of performance
ADI-R is structured interview for carers
ADOS is play-based, DISCO, 3Di, CARS
ABC (Aberrant Behaviour Checklist)
BPI (Behaviour Problems Inventory)
DBC (Developmental Behaviour Checklist)
SALT & OT assessment
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Part of general delay or particular condition
Interactions with behaviour, social skills etc
Pragmatic skills, semantics, syntax, speech
Atypical sensory processing to self-stimulate
Tactile sensitivity/poor tactile discrimination
Difficulties generating strategies for learning
Family, School & Social
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Impact on siblings is important to assess
Stress on carers may adversely effect child
Processes by which families come to terms
Significant life experiences – medical, trauma
Parental support groups and Contact a Family
Attendance at school helps child meet people
Appropriate to needs of child
CAUSES OF MENTAL ILLNESS:1) Biological
2) Psychological
3) Social
Biological Aetiology
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Genetic
Epilepsy
Sensory Impairment
Prescribed Medication
Communication skills
Autism
Psychological Aetiology
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Family dynamics
Low self-esteem
Limited range of coping behaviours
Consistent parenting
Exploitation/neglect/abuse
Bullying/harrassment
Social Aetiology
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Ability to live independently
Limited choices/opportunities
Problems accessing transport
Limited social networks
Broken relationships
Sexuality
ADHD
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Movement partly dependent on environment
Most common association is with conduct
ID, ASD & ADHD often co-exist together
Make allowance for developmental level
Stimulant medication reduces symptoms
Short half-life and duration of action
Appetite suppression can be a problem
Attempts can be made to stop when stable
Behavioural Problems
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Aggression, property destruction, deceit
Commonly occur with other conditions
Adolescence – truancy, stealing, fire-setting
Long-term problems in adult life
Lower income households, lone parents
Aggression main reason for residential care
Contact with CJS
NICE Challenging Behaviour
• RCPsych defn (2007):– ‘Behaviour of such an intensity, frequency or
duration as to threaten the quality of life and/or
the physical safety of the individual or others and
is likely to lead to responses that are restrictive,
aversive or result in exclusion.’
• Work with person & carers
• Understand function of behaviour
• Work in least restrictive way possible
General Principles of Care
• Clear focus on person, family & carers
• Interventions delivered in least restrictive setting
• Prompt & co-ordinated access to specialist
services
• Staff training in strategies to reduce risk &
manage behaviour
• Recognise impact on family/carers & consider
support/groups etc
• Strategies for early identification
• Annual physical health checks
Vulnerabilities
Biological –
sensory/physical
health/genetic
Maintaining
Processes
Pain
Challenging Behaviour
Psychosocial – life
events,
communication,
social networks,
meaningful
activity,
psychiatric
Impact
Other people’s behaviour
Exclusion, harm
to self, harm to
others
Assessment of Challenging Behaviour
• Person-centred with focus on outcomes &
improving quality of life (resilience/resources)
• Regular review of self-harm/harm to others/
breakdown of family/abuse/escalation
• Functional assessment varied in complexity &
intensity in line with behaviour that challenge
• Initial screening using MH assessment tools if
MH problem might underlie behaviour
Interventions for Ch. Behaviour
• Parent training programmes for under 12yo
• Functional assessment of behaviour
• Antipsychotic drugs only in combination with
other interventions & only if
– Psychological interventions don’t produce change
– Treatment for coexisting problems not reduced
behaviour
– Risk to person or others is severe
Positive Behaviour Support
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applied behaviour analysis
the normalisation/inclusion movement
person-centred values.
Integrates a comprehensive lifestyle change, a
lifespan perspective, ecological validity,
stakeholder participation, social validity, systems
change, multi-component intervention, emphasis
on prevention, flexibility in scientific practices
and multiple theoretical perspectives
Key Components of PBS (Gore et al)
Values
Prevention and reduction of challenging behaviour occurs within the context of
increased quality of life, inclusion, participation, and the defence and support of
valued social roles
Constructional approaches to intervention design build stakeholder skills and
opportunities and eschew aversive and restrictive practices
Stakeholder participation informs, implements and validates assessment and
intervention practices
Theory and
Evidence-base
An understanding that challenging behaviour develops to serve important
functions for people
The primary use of applied behaviour analysis to assess and support behaviour
change
The secondary use of other complementary, evidence-based approaches to
support behaviour change at multiple levels of a system
Process
A data-driven approach to decision making at every stage
Functional assessment to inform function-based intervention
Multicomponent interventions to change behaviour (proactively) and manage
behaviour (reactively)
Implementation support, monitoring and evaluation of interventions over the long
term
Reading on Challenging Behaviour
• Challenging behaviour and learning
disabilities: prevention and interventions for
people with learning disabilities whose
behaviour challenge; NICE guidelines [NG11]
• Emerson E, Bromley J. The form and function
of challenging behaviours. Journal of
Intellectual Disability Research. 1995;39:38898.
Aggressive Behaviour
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Treatment of underlying cause, environment
Antipsychotics used for many years
Risperidone has largest amount of evidence
Low-dosages associated with low risk of sideeffects
• Aripiprazole used if weight gain – efficacious
• Informed consent from carers
Self-injurious Behaviour
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Predisposing, precipitating, maintaining factor
Adequate treatment of comorbid conditions
Treatment targets should be realistic
Historically, antipsychotic drugs widely used
Risperidone can be tried
SSRIs can be used esp if depression/anxiety
Naltrexone trial justified in severe cases
Anxiety Disorders
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Anxiety disorders in 10-12% of C&A with ID
GAD, phobia and sepn anxiety more common
Generally do not require psychopharmacology
Antidepressants, anxiolytics, antipsychotics
US FDA review suggests small risk of suicide
Most side-effects usually resolve in weeks
Administer CBT & sertraline to C&A with OCD
Additional studies needed in YP with ASD
Depression
Criteria for diagnosis?
Depressed mood
Decreased interest/pleasure
Decrease/increase appetite/weight loss
Insomnia/hypersomnia
Psychomotor activity/retardation
Fatigue
Worthlessness/inappropriate guilt
Decreased concentration/inability to think
Thoughts of death/suicidal ideation
How might these symptoms
present in person with
learning disability?
Observed mood e.g. Apathetic facial expression with
lack of emotional reactivity
Withdrawal
Change in total sleep time
Agitation may present as self-injurious behaviour or
aggression
Decreased energy/passivity
Statements such as ‘I’m no use’
Change in performance
Perseveration on the deaths of family members or
friends, pre-occupation with funerals
Mood Disorders
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Medication can be beneficial
SSRIs have most desirable SE profile
Treat for 6-12months to prevent relapses
Bipolar disorder under recognised in LD (adult
literature)
• Anticonvulsants alternative to lithium
• BMI, FBC, LFTs before starting Na Valproate
• U&Es, TFTs, FBC before commencing lithium
Tics
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Tics common in young people with ID
Involuntary tics or stereotyped behaviour
Associated with OCD & hyperactivity
Interference with daily functioning, pain
Occasionally individuals benefit from clonidine
Antipsychotics most commonly used
Mph & clonidine effective for ADHD with tics
Schizophrenia & other Psychoses
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Auditory hallucinations, delusions, withdrawal
Difficult to diagnose in severe ID
Based on information from carers & observatn
Important differential is ‘self-talk’ seen in ID
Increase in soft neurological signs & epilepsy
Good therapeutic responses to antipsychotics
Risk of extrapyramidal symptoms & TD
Hyperprolactinaemia: amenorrhoea, hirsutism
Weight gain is greater in C&A than in adults
Metabolic syndrome – dyslipidaemia, glucose
Autism
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Common in ID affecting up to 50% of YP
May be difficult to diagnose in severe ID
Comprehensive medical work-up required
Difficulties describing emotions/symptoms
Increase in maladaptive behaviours
Depression & anxiety common in older
adolescence/adults
Sleep Disorders
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Common in children with learning disabilities
Sleep hygiene measures, bedtime routines
Melatonin is useful to promote sleep
Rectification of sleep-wake cycle interference
Melatonin given 30mins before bedtime
Duration of treatment is variable
Pharmacological Interventions
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Often don’t meet formal diagnostic criteria
Focus on observable behaviours/activity
Used in combination with other approaches
Rates of response poorer, frequent S-es
Close monitoring, demonstrable benefits
Extrapolation from the generic evidence-base
Off-license prescribing (Medicines Act, 1968)
Psychological Interventions
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Adapting standard, evidence-based approach
Parents/teachers expectations/support
Carers are co-therapists to generalise
Evidence-base for C&YP with LD limited
Carer’s emotional & social circumstances
YP’s emotional & intellectual development
Adopt a stance that avoids blame of parents
Psychological Approaches
• Helping parents/YP understand their diagnosis
• Inability to come to terms with disability
• Minimisation by parent can provokes
protection by other
• Supervision appropriate to chronological age
• Origin of parent’s beliefs/patterns of response
• Accept need to change thinking/behaviour
• See each other in constructive light
Teach Skills
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Emotional literacy/social skills/relationships
Individual/group level, with/without autism
Direct instruction/modelling/coaching
Role-play to practice strategies may be useful
Sexual exploration in adolescence
Awareness of consent
Make implicit social rules explicit
Behavioural Approaches
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Physical/verbal aggression, oppositionality etc
Mild/moderate/severe/profound LD
Group interventions aiming to train parents
Generic or modified interventions
Techniques such as selective ignoring, praise
Individual approach based on FA of behaviours
Constructional, functional & socially valid
Preventative Interventions
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Improving sleep patterns
Use graded exposure to improve coping ability
Introduce a structured activity schedule
Increase level of preferred activities
Increase interaction non-contingent to
behaviour
• Teach independent living skills e.g. make drink
• Modify level of stimulation in environment
Functional Communication Training
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Teach PECS, Makaton etc
Introduce flashcards - allow someone to leave
Introduce technology to aid requests
Safe objects to chew to replace other items
Alternative ways to meet sensory needs
Manipulate reinforcement contingencies
– Eliminate behaviour & acceptable alternative
Cognitive Behavioural Approaches
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Shorter sessions & repeat information
Use follow-up probes to clarify understanding
Make abstract concepts more concrete
Suggest possibilities if YP struggles to generate
Make use of visual cues e.g. traffic lights
Visually record sessions so YP can review
Involve parents in homework
Autism Specific Approaches
• Aim to remediate core communication (ABA)
• Starts before 3yo & 40hrs home-based ix
– Wide range of results & difficulty replicating
• Less intensive interventions target specific skills
• Social stories (Gray, 1995) teach responses
– Case studies support effectiveness
• Research remains scarce
• Draw on skills in generic CAMHS
Transition & Social Networks
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Difficulties in smooth transitions to adult life
Limited opportunities & choices offered
Lack of suitable provision for young people
Lack of YP & family’s input in planning process
Lack of m-a working to support transition
Gulf between child & adult services in health
Timing of preparation for transition
Service Models
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Development of Specialist CAMHS for LD
Increased propensity to develop MH problems
MH support for children with LD differs
Inclusion agenda – all able to access facilities
MH needs of YP: Count Us In (2002)
– Referred to range of services (CAMHS, specialist)
• Person-centred planning & circles of support
Which professionals (or what skills
may be needed) may play a role in a
mental health assessment?
Psychiatrist – history, mental state, diagnosis
Psychologist- neuropyschological testing, behavioural analysis
Social Worker- living arrangements, activities, education,
finances, vulnerability issues
Nurses/MHPs- gather information, different roles
Occupational Therapist- everyday functioning, skills and
abilities, co-ordination, sensory profile
Speech and Language Therapist- assess
communication skills
Multidisciplinary Assessment
• Biological, psychological, educational,
developmental and social perspectives
• Succinct yet informative formulation
• Alternative explanations
• Predisposing, precipitating & perpetuating
• Profile of useful, cost-effective & evidencebased biopsychosocial interventions
Multi-agency Working
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Different professional cultures
Inappropriate expectations
Learning from different skills & perspectives
Complementing each other’s practice
Joining up packages of care & support
Policy Context
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Winterbourne View (DoH, 2012)
Challenging Behaviour & LD (NICE, 2015)
Paving The Way (CBF, 2015)
Aiming High for Disabled Children (DfES, 2007)
Transition: Moving on well (DoH, 2008)
Healthy Lives, Brighter Futures (DoH, 2009)
CAMHS Review (DoH, 2010)
Features of a Good Service
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Holistic. Emotional, physical, social etc
Child-centred planning.
Developmental framework.
Multi-agency commissioning. Health/social
Inclusion & equality of access.
Proactive & problem-solving. Work flexibly.
Collaborative practice & consent. Feedback.
Views of Children & Families
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Take into account cultural/ethnic backgrounds
Having a single referral route
Time to listen to YP & provide opportunities
Support for families & carers
Practicalities e.g. where services situated
Different philosophies of child & adult services
Several gaps in provision – inpatient/outreach
In-patient Facilities
• Assessment/diagnosis/treatment
• Outreach work can shorten/eliminate
admission
• Close liaison between in-patient/local teams
• Clear, integrated pathway of care incl.
discharge
• Hard to achieve if geographically distant
Changing Organisational Contexts
• Absence of sufficient capability and capacity in systems
to support people with challenging behaviour has been
shown to be a key organisational determinant of
family/service breakdown and subsequent out of area
placement (Goodman et al, 2006; Phillips and Rose,
2010)
• Carr et al’s (1999) meta-analysis of PBS interventions
found that the success rate associated with natural
carers was higher than that obtained by external
intervention agents and that interventions conducted
in natural settings were as effective as those in more
controlled ones.
Safeguarding Children
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Nature of LD may present additional needs
Children Act says consider in relation to needs
Prof differences should not obscure focus
13% ‘children in need’ due to disability
Abuse & Disabled Children
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May be more socially isolated in community
Targeted by sexual predators because access
More dependent on parents/carers
More vulnerable to bullying – ‘different’
Living in situation assoc with poor outcomes
Professionals lack knowledge about LD
Over-identify with parents/carers
Mental Health Act
• LD & no other form of mental disorder: may not
be detained unless accompanied by abnormally
aggressive or seriously irresponsible conduct
• Possible for ASD without mental disorder or
behaviour (unlikely)
• LD defn:- ‘a state of arrested or incomplete
development of the mind which includes
significant impairment of intelligence & social
functioning’
Use of MHA
• Capacity to agree to admission?
• Parent can consent to admission, under 16yo
• Lack capacity, admitted in ‘best interests’ and
not Deprivation of Liberty (use MHA under 18)
• Risk to patient or public
• History of non-compliance with treatment
• Consent/capacity fluctuating
Mental Capacity Act
• Is there an impairment of mind/brain?
• Does impairment mean person unable to
make decision?
• What decision they need to make and why
• Consequences of making (or not) decision
• Understand, retain, use & weigh up relevant
info
• Communicate decision
Equality Act & Reasonable
Adjustments
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Communication support
Information in an accessible format
Sufficient time for preparation before meeting
Adapted treatment programmes
Adapted therapeutic environment
Risk assessment of personal safety
Prioritised access/involvement of carers
Equality Act
• Difficulty managing queueing, arrange
different meal times
• Reduced ability/confidence, access activities
which are on ‘first come first served’ basis