People with intellectual disabilities and their parents are at risk of being undervalued and stigmatized.

Mary Lindsey (UK)

Most parents aspire to having intelligent and able children who will achieve in relation to the expectations of a society in which intelligence is highly valued. Therefore, people with intellectual disabilities and their parents are at risk of being undervalued and stigmatized. Furthermore, many people internalize these values and may feel that they have failed in their own eyes as well as in those of others. Children with intellectual disabilities and their parents have to come to terms with this situation and will ideally adopt a different set of values, based on the inherent worth of every individual, that focuses on strengths rather than weaknesses. This should lead to young people with intellectual disabilities, with the support of their parents, enjoying their childhood, growing up with good self-esteem and making a contribution to society. To some extent this aspiration has already been accepted in many countries and is demonstrated through human rights legislation and policies of social inclusion.

Professionals working with people with intellectual disabilities should be aware of these issues and consider their own values and attitudes to ensure that they respond appropriately to the people with intellectual disabilities that they meet and to their families.

Diagnosing intellectual disability in childhood
Intellectual disability may be recognized at any time in childhood or adolescence, but generally the more severe the disability, the earlier it will be noticed. Children with Down's syndrome are usually diagnosed soon after birth because of their physical characteristics, whereas those with a mild intellectual disability and no physical differences may not be diagnosed until they start to experience difficulties in adolescence.

Many people with very mild intellectual disabilities are not identified, and function well in society. Factors associated with mild and moderate intellectual disabilities include poorer socio­economic status and psychosocial adversity; in such circumstances, identification of intellectual disability may be delayed.
The diagnosis of moderate or severe intellectual disability is usually made by a paediatrician, but children with mild intellectual disabilities may be referred to child and adolescent mental health services (CAMHS) because of their behaviour, mood changes or other concerns. Their learning difficulties may have been recognized educationally without a diagnosis of intellectual disability having been made. There are good practice guidelines (Leonard, 1994) for professionals about communicating with parents at the time of diagnosis.

When assessing older children and adolescents it is important to identify the nature and extent of any learning difficulties and to refer for psychometric assessment if necessary. If the extent of the intellectual disability has not been recognized, the child can be put under pressure to achieve and even blamed for not cooperating or trying hard enough. It is important that the family's and teachers' expectations are at the right level; they should understand that the child will continue to learn and progress, albeit at a slower rate than peers, and will still be able to achieve a great deal. It should be explained that, because of the slower rate of learning, the gap between the child and peers will widen in terms of intellectual ability although in other areas of life the young person will have similar aspirations and will want a similar lifestyle.

Causes of intellectual disability
It is important for a number of reasons to try to identify the cause of the intellectual disability:

  • it may lead to identification of physical or behavioural pheno­types and possible therapeutic intervention
  • it provides an explanation of the problems for the family
  • genetic counselling for the parents may be necessary.
    In about 80% of children with severe intellectual disability, a contributory organic factor can be identified, of which about 70% are prenatal.
  • Prenatally, chromosome and single gene errors (such as Down's syndrome), disorders of development (such as neural tube defects) and intrauterine factors (such as toxins or infections) are the most common causes of intellectual disability
  • Perinatal factors include complications of birth, particularly cerebral hypoxia and haemorrhage
  • Postnatal causes include infections, accidents and abuse.

Comorbid conditions
Other problems are frequently comorbid with intellectual disability (Figure 1). When assessing behaviour it is important to consider:

  • physical factors, particularly those that might be causing pain, discomfort or frustration
  • sensory impairments - these are common and should be screened for
  • epilepsy - the more complex and subtle presentations of this condition are much more common in young people with intellectual disabilities and are often missed
  • the effects of any medication
  • other developmental disorders that are often present, such as autistic spectrum disorders, attention deficit hyperactivity disorder (ADHD), dyspraxia (developmental coordination disorder), tic disorders, specific learning difficulties in communication/reading/writing
  • that mental illness occurs at a higher rate in adolescents and adults with intellectual disabilities.

A multiaxial approach to diagnosis is usually recommended, particularly in children with more severe and complex problems.

Potential causes of mental health problems in children and adolescents with intellectual disabilities

The learning disability

  • Inappropriate expectations and pressures from others or self
  • The pain of difference and defensive responses
  • Poor self-esteem and lack of self-worth

The cause of the intellectual disability

  • Behavioural phenotypes
  • Vulnerability to mental illness

Other developmental disorders

  • Autistic spectrum disorders
  • Attention deficit hyperactivity disorders
  • Tic disorders

Physical problems

  • Pain, discomfort or frustration
  • Sensory impairments
  • Epilepsy and anti-epileptic drugs
  • Poor sleep pattern, resulting in tiredness by day

Family attitudes and skills

  • Reactions to having a child with an intellectual disability
  • Inappropriate or poor parenting
  • Inappropriate coping strategies
  • Inadequate support, respite, etc.

Life events, particularly where good support is lacking

  • Bereavement and loss
  • Abuse - physical, emotional or sexual
  • Rejection, bullying and scapegoating
  • Major changes such as changes of school, family,
  • Transitions - into school, puberty, adolescence, adulthood

The rate of emotional and behavioural problems is much higher in children and adolescents with intellectual disability than in the general population. Most studies have found prevalence rates of 40-50%, although there is very poor access to and use of mental health services. Between 5% and 15% of children with intellectual disabilities have behavioural problems that present a significant challenge to those caring for them. In many cases these problems cannot be adequately described by current diagnostic classification systems (ICD-10 and DSM-IV).

The family and wider networks
Family reactions to intellectual disability are very variable but tend to follow a similar pattern. It is usual for the family to grieve the loss of the 'normal' child while at the same time having to come to terms with disability, both emotionally and practically (see Jacques 2003; p.39 and Banks 2003; p.63). The bereavement reaction follows the usual stages of initial numbness and shock, followed by overt grief and then the development of coping strategies. The extent and pace of this can vary, and the way that family members react will depend on the following factors:

  • the child's age when the diagnosis is made
  • previous experience and knowledge of disability
  • family values and beliefs
  • family structure, including extended family
  • mental and physical health of parents
  • parental age and marital relationship
  • other stressors, such as housing and finance
  • their usual way of coping with crises and stress.

Most families show resilience and common sense as well as experiencing emotional pain and stress. There are many ways of successfully adapting (see Jacques 2003; p. 41), helped by resources within the family network or from outside agencies, such as social services and child health services. Most families will recognize if a coping strategy is unsuccessful and change their approach. However, a minority will adapt in ways that can lead to problems, such as conflict with external agencies or inappropriate care of their child. Other examples include prolonged and excessive denial, blame, anger, rejection or seeking of 'miracle cures'. The impact on siblings must also be borne in mind.
When working with the family it is essential for professionals to know:

  • the composition of the family
  • the way that they understand their child's disability
  • how they have come to terms with it
  • their attitudes, aspirations and fears
  • their resourcefulness
  • their parenting style
  • their sources of external help.

It is also important to understand the way they function, both in relation to the child with disabilities and also with other family members, in wider networks and when in crisis. Changes occur at different stages of the life-cycle. For example, starting school and the onset of puberty, adolescence and adulthood may have a destabilizing effect on the family system.
A minority of children will be cared for outside their birth family and will be with adoptive or foster families or in residential settings. Nearly all will be in an educational setting for much of their childhood and many will receive respite care. Carers will also have their own beliefs, expectations and coping strategies. It is impossible to intervene effectively without understanding the systems and factors that will have a major impact on the day-to-day care of the child.

Impact of intellectual disability on the young person
Awareness of being different from peers and siblings, particularly if associated with poor self-esteem, can have a major impact on an individual's emotional development. In addition, young people with intellectual disabilities are more vulnerable to abuse, rejection, scapegoating and exclusion from social settings. Emotional needs and mental health promotion are often less important to the family and other networks because they are more concerned with overcoming intellectual difficulties and other health problems. Times of change, particularly the transition to adult services, can be particularly stressful. Therefore, it is important for professionals to:

  • focus and develop strengths as well as weaknesses
  • be alert to the possibility of abuse
  • encourage realism, valuing young people as they are, not as they might be
  • recognize the impact of adverse life events
  • facilitate the usual adjustment processes, such as coming to terms with limitations and developing self-esteem
  • recognize the emotional pain and defensiveness experienced by many young people.

There are many ways of assisting and supporting developmental progress and promoting good health. Although much of the input is through educational and social services, health service professionals are likely to be involved at various times in the life of the young person. It is important that those involved understand the role of the various agencies and their potential contribution.

Skill development: early intervention programmes, such as Portage (Cameron, 1986), involve intensive work with parents to teach them how best to facilitate children's development. Most research on these has shown short-term improvements in academic achievement and adjustment, but the longer-term benefits are less certain and may depend on the characteristics of the child and family and the duration, intensity and timing of the intervention.
There have been many advances in the educational and behavioural technologies that enable people with intellectual disabilities to develop skills. Behavioural strategies are now a standard feature of most joint clinical and educational programmes. Detailed methods for assisting parents to become trainers of their own children are part of very structured individual programmes such as the Lovaas approach for autism (Lovaas, 1987).

Mental health promotion: activities and interventions should be challenging but within the current level of ability of the child. All children need a range of opportunities to ensure both learning and emotional development through secure attachments, and stable relationships with adults and peers.
There is no evidence that the emotional needs of children with intellectual disabilities are different from those of other children. Early institutionalization and failure to attach to parental figures is harmful to psychological development, and all children need to feel valued and to develop self-esteem. Social and environmental factors have a major impact on the adjustment and functioning of any child and there is evidence that children with intellectual disabilities are particularly at risk from, and vulnerable to, such factors.

Problem behaviours: the problems that can arise for children with intellectual disabilities and their carers are often related to associated physical or physiological problems; if behavioural problems develop, a thorough assessment is required. Disturbances of feeding, elimination or sleep are common and may arise as a primary problem or as a symptom of underlying disturbance or illness. Behaviours that present a challenge to families or services will evoke different types of response according to:

  • the way the child behaves
  • the physical and social impact of these behaviours at home and elsewhere
  • the meaning given to the behaviour by those caring for the child
  • the resources available to cope with the behaviour
  • the services available.

Often it is the interaction of these factors that makes interventions difficult and complex. Such behaviours vary from non-compliance to extremes of harm to self or others and may significantly impair the health and/or quality of life of the child or others. They also cause a great deal of stress to carers and can provoke inappropriate and harmful responses such as abuse, exclusion, neglect and deprivation (see pages 62-6). Those at increased risk of challenging behaviour are:

  • boys
  • children with specific syndromes, e.g. fragile-X syndrome (see Sabaratnam 2003; pp.29-33)
  • children with more severe disabilities
  • children with additional disabilities such as sensory impairments, autism and communication disorders
  • children who have been abused.

Many of these behaviours are thought to be a functional response to a challenging situation (see Joyce 2003; pp. 17-20) and represent the child's attempt to interact with and to control the behaviour of others. Some behaviours, particularly self-stimulatory behaviours, such as self-harm, may reduce internal levels of arousal and stress; others may be linked to psychiatric disorders. Many challenging behaviours begin in childhood and are likely to persist, particularly if inappropriate interventions are used.

Managing problem behaviours - modern behavioural approaches can be effective in reducing the severity of behaviour in the short and medium term. Some forms of psychoactive medication are useful in the treatment of certain types of challenging behaviour (see Deb, 2003; pp.66-8), e.g. opioid blockers for self-injurious behaviour. There is emerging evidence that some antipsychotics, such as risperidone, can be effective with some disruptive behaviours. However, there is concern that such medication is over-used, with insufficient evidence of its effectiveness, while positive behavioural support, which is known to be effective, is often not available. Effective behaviour-modification programmes require detailed analysis of the behaviour, its antecedents and consequences and need to be followed by consistent, carefully planned interventions.

Comorbid psychiatric disorders: identifying and treating psychiatric disorders in children with intellectual disabilities can be difficult and requires specialist training and skills (see Figure 2). Interventions from specialist services need to take place in conjunction with education and social services and will involve the family and the child. They may include:

  • diagnosis
  • counselling for parents
  • systemic interventions with family and other networks
  • specialized individual psychological therapies, including art therapies
  • pharmacological therapy
  • cognitive-behavioural therapy.

Assessment of mental health problems

Interview with parents and/or other carers

  • Nature and extent of presenting and any other problem(s)
  • Family structure, history and functioning
  • Present level of functioning, including social skills or difficulties
  • Developmental history
  • Nature and extent of intellectual disability
  • Cause of intellectual disability and associated physical or
    behavioural phenotypes
  • Physical health and possible impact on behaviour
  • Medical history, including present and past medication
  • Comorbid developmental disorders
  • Significant and potentially stressful life events
  • Educational provision and progress and problems in school or
  • Informal and formal support networks for child and family
  • Previous interventions and their effect

Interview with child

  • Mental state examination and/or observation of behaviour, play
    and interactive skills
  • Physical/ neurological examination

Other information (as indicated)

  • Interview with school staff or school reports
  • Psychological and cognitive assessments
  • Information from other professionals working with the child
    and family

Medical investigations (as indicated)

  • EEG
  • Brain scans
  • Chromosome studies

The shift of service provision in the UK from health provision (mainly in long-stay hospitals) to community care in the last 30 years has not led to all young people with intellectual disabilities living in the community. There has been a growth in residential homes and residential schools, not always with good access to healthcare.

The Children Act 1989 identified children with disabilities as 'children in need', and conceptualized 'children-first', better-integrated services. The Education Act 1996 encouraged a broad and balanced education, and the introduction of the National Curriculum has made additional demands on pupils and schools. The promotion of educational integration has led to fewer local specialized settings, less tolerance of aberrant behaviour in mainstream settings and an increase in demand for treatment services.

Disorders of mental health requiring more specialist intervention

Developmental disorders

  • Autistic spectrum disorders
  • Attention deficit hyperactivity disorders
  • Coordination disorders (dyspraxia)
  • Tic disorders

Mental illnesses

  • Schizophrenia
  • Depression and bipolar disorders
  • Obsessive-compulsive disorders
  • Severe anxiety and phobic disorders
  • Severe adjustment reactions
  • Severe somatization and conversion reactions

Disturbances of normal physiological patterns

  • Sleep disorders
  • Eating disorders

Challenging behaviours

  • Aggression
  • Self-injurious behaviour
  • Avoidant behaviours

Severe reactions to adverse life experiences

  • Post-traumatic stress reactions
  • Reactions to abuse and bullying
  • Adjustment reactions

Offending and forensic psychiatric problems

  • Theft
  • Sexual offences
  • Aggression

Substance misuse

  • Alcohol
  • Drugs

Health services
In addition to the services available from education and social services departments, health services have an important part to play in the lives of children with intellectual disabilities. They should provide:

  • early diagnosis, counselling and support to parents
  • primary healthcare that is sensitive to the particular needs of children with intellectual disabilities and their families
  • specialist community and general hospital services that take the disabilities and family issues into account and have particular expertise in the physical conditions that are associated with particular syndromes and comorbidities
  • child and adolescent mental health services (CAMHS) that have the resources and competencies to respond to the full range of mental health needs of children and adolescents with disabilities (including a wide range of multidisciplinary expertise available in both community and in-patient settings) (Figure 3).

It is important that the referral criteria for specialist services are clearly defined but allow a degree of flexibility in provision to avoid gaps being created.

  • The quality of care for people with intellectual disabilities and their families will be fundamentally affected by the attitudes and values of the professionals working with them. The availability and quality of services will be likewise affected by the attitudes and values of the commissioners
  • Mental health problems in children and adolescents with intellectual disabilities can be multifaceted and require a very comprehensive assessment from professionals who have had training and experience in this work
  • Interventions are usually multidisciplinary and staff from other statutory agencies, particularly education and social services, are also likely to need to be involved
  • The availability and quality of mental health services for this important and vulnerable group is very variable throughout the UK. Changes in education, social and health services, coupled with raised expectations of potential service users, have led to considerable gaps in service provision in some areas


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Jacques R (2003) Family Issues. Psychiatry 2:9, 39-42.

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(A non-clinical book looking at the broader issues relating to learning disability and its impact on the child and family and with a focus on multi-agency practice.)

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(A thorough review of neuropsychiatric disorders, their epidemiology, comorbidities, presentation, assessment and management; it is clinical in orientation.)

Lindsey M. Emotional, behavioural and psychiatric disorders in children. In: Russell O, ed. The Psychiatry of Learning Disabilities. London: Gaskell, 1997.
(A clinically orientated overview, including epidemiology, causes, assessment, presentation and management; contains some case examples.)

Tonge B. Psychopathology of children with developmental disabilities. In: Bouras N, ed. Psychiatric and Behavioural Disorders in Developmental Disabilities and Mental Retardation. Cambridge: Cambridge University Press, 1999.
(A brief review particularly of phenomenology, assessment, multiple disabilities and medical issues and management principles. It includes good case examples.)

This article was first published in Psychiatry; Volume 2:9, September 2003 and reprinted with the kind permission of The Medicine Publishing Company.

Article published in 2003. Reviewed in 2019, content continues to be relevant.