Intellectual disability
Intellectual disability | |
---|---|
Other names | Intellectual developmental disability (IDD), general learning disability[1] |
Children with intellectual disabilities and other developmental conditions competing in the Special Olympics World Games | |
Specialty | Psychiatry, pediatrics |
Differential diagnosis | Autism, ADHD, down syndrome, Fragile X, Fetal alcohol spectrum disorder, learning disability |
Frequency | 153 million (2015)[2] |
Intellectual disability (ID), also known as general learning disability in the United Kingdom
Intellectual disability is subdivided into syndromic intellectual disability, in which intellectual deficits associated with other medical and behavioral signs and symptoms are present, and non-syndromic intellectual disability, in which intellectual deficits appear without other abnormalities.[7] Down syndrome and fragile X syndrome are examples of syndromic intellectual disabilities.
Intellectual disability affects about 2 to 3% of the general population.
Signs and symptoms
Intellectual disability (ID) becomes apparent during childhood and involves deficits in mental abilities, social skills, and core activities of daily living (ADLs) when compared to same-aged peers.[11] There often are no physical signs of mild forms of ID, although there may be characteristic physical traits when it is associated with a genetic disorder (e.g., Down syndrome).[12]
The level of impairment ranges in severity for each person. Some of the early signs can include:[12]
- Delays in reaching, or failure to achieve milestones in motor skills development (sitting, crawling, walking)
- Slowness learning to talk, or continued difficulties with speech and language skills after starting to talk
- Difficulty with self-help and self-care skills (e.g., getting dressed, washing, and feeding themselves)
- Poor planning or problem-solving abilities
- Behavioral and social problems[13]
- Failure to grow intellectually, or continued infant childlike behavior
- Problems keeping up in school
- Failure to adapt or adjust to new situations
- Difficulty understanding and following social rules[11]
In early childhood, mild ID (IQ 50–69) may not be obvious or identified until children begin school.
Moderate ID (IQ 35–49) is nearly always apparent within the first years of life. Speech delays are particularly common signs of moderate ID. People with moderate intellectual disabilities need considerable support in school, at home, and in the community in order to fully participate. While their academic potential is limited, they can learn simple health and safety skills and to participate in simple activities. As adults, they may live with their parents, in a supportive group home, or even semi-independently with significant supportive services to help them, for example, manage their finances. As adults, they may work in a sheltered workshop.[8] About 10% of persons with ID are likely to have moderate ID.
People with Severe ID (IQ 20–34), accounting for 3.5% of persons with ID, or Profound ID (IQ 19 or below), accounting for 1.5% of persons with ID, need more intensive support and supervision for their entire lives. They may learn some ADLs, but an intellectual disability is considered severe or profound when individuals are unable to independently care for themselves without ongoing significant assistance from a caregiver throughout adulthood.[8] Individuals with profound ID are completely dependent on others for all ADLs and to maintain their physical health and safety. They may be able to learn to participate in some of these activities to a limited degree.[12]
Co-morbidity
Autism and intellectual disability
Intellectual disability and
Defining differences
In a study conducted in 2016 surveying 2816 cases, it was found that the top subsets that help differentiate between those with ID and ASD are, "impaired non-verbal social behavior and lack of social reciprocity, [...] restricted interests, strict adherence to routines, stereotyped and repetitive motor mannerisms, and preoccupation with parts of objects".[16] Those with ASD tend to show more deficits in non-verbal social behavior such as body language and understanding social cues. In a study done in 2008 of 336 individuals with varying levels of ID, it was found that those with ID display fewer instances of repetitive or ritualistic behaviors. It also recognized that those with ASD, when compared to those with ID, were more likely to isolate themselves and make less eye contact.[22] When it comes to classification ID and ASD have very different guidelines. ID has a standardized assessment called the Supports Intensity Scale (SIS); this measures severity on a system built around how much support an individual will need. While ASD also classifies severity by support needed, there is no standard assessment; clinicians are free to diagnose severity at their own judgment.[23]
Causes
Among children, the cause of intellectual disability is unknown for one-third to one-half of cases.[8] About 5% of cases are inherited.[9] Genetic defects that cause intellectual disability, but are not inherited, can be caused by accidents or mutations in genetic development. Examples of such accidents are development of an extra chromosome 18 (trisomy 18) and Down syndrome, which is the most common genetic cause.[9] DiGeorge syndrome and fetal alcohol spectrum disorders are the two next most common causes.[8] However, there are many other causes. The most common are:
- Problems during pregnancy. Intellectual disability can result when the fetus does not develop properly. For example, there may be a problem with the way the fetus's cells divide as it grows. A pregnant woman who drinks alcohol (see fetal alcohol spectrum disorder) or gets an infection like rubella during pregnancy may also have a baby with an intellectual disability.
- Problems at birth. If a baby has problems during labor and birth, such as not getting enough oxygen, they may have a developmental disability due to brain damage.
- The group of proteins known as histones have an essential part in gene regulation, and sometimes these proteins become modified and are prevented from working properly. When the genes responsible for the development of neurons are affected, it affects the brain and behavior in the individual.[30]
- Exposure to certain types of toxins. Diseases like whooping cough, measles, or meningitis can cause intellectual disability if medical care is delayed or inadequate. Exposure to poisons like lead or mercurymay also affect mental ability.
- Malnutrition is a common cause of reduced intelligence in parts of the world affected by famine, such as Ethiopia and nations struggling with extended periods of warfare that disrupt agriculture production and distribution.[32]
- Absence of the arcuate fasciculus.[33]
Diagnosis
According to both the
It is formally diagnosed by an assessment of IQ and adaptive behavior. A third condition requiring onset during the developmental period is used to distinguish intellectual disability from other conditions, such as
Intelligence quotient
The first English-language IQ test, the Stanford–Binet Intelligence Scales, was adapted from a test battery designed for school placement by Alfred Binet in France. Lewis Terman adapted Binet's test and promoted it as a test measuring "general intelligence". Terman's test was the first widely used mental test to report scores in "intelligence quotient" form ("mental age" divided by chronological age, multiplied by 100). Current tests are scored in "deviation IQ" form, with a performance level by a test-taker two standard deviations below the median score for the test-takers age group defined as IQ 70. Until the most recent revision of diagnostic standards, an IQ of 70 or below was a primary factor for intellectual disability diagnosis, and IQ scores were used to categorize degrees of intellectual disability.
Since the current diagnosis of intellectual disability is not based on IQ scores alone, but must also take into consideration a person's adaptive functioning, the diagnosis is not made rigidly. It encompasses intellectual scores, adaptive functioning scores from an adaptive behavior rating scale based on descriptions of known abilities provided by someone familiar with the person, and also the observations of the assessment examiner, who is able to find out directly from the person what they can understand, communicate, and such like. IQ assessment must be based on a current test. This enables a diagnosis to avoid the pitfall of the Flynn effect, which is a consequence of changes in population IQ test performance changing IQ test norms over time.
Distinction from other disabilities
Limitations in more than one area
Adaptive behavior, or adaptive functioning, refers to the skills needed to live independently (or at the minimally acceptable level for age). To assess adaptive behavior, professionals compare the functional abilities of a child to those of other children of similar age. To measure adaptive behavior, professionals use structured interviews, with which they systematically elicit information about persons' functioning in the community from people who know them well. There are many adaptive behavior scales, and accurate assessment of the quality of someone's adaptive behavior requires clinical judgment as well. Certain skills are important to adaptive behavior, such as:
- Daily living skills, such as getting dressed, using the bathroom, and feeding oneself
- Communication skills, such as understanding what is said and being able to answer
- Social skills with peers, family members, spouses, adults, and others
Other specific skills can be critical to an individual's inclusion in the community and to develop appropriate social behaviors, as for example being aware of the different social expectations linked to the principal lifespan stages (i.e., childhood, adulthood, old age). The results of a Swiss study suggest that the performance of adults with ID in recognizing different lifespan stages is related to specific cognitive abilities and to the type of material used to test this performance.[37]
Management
By most definitions, intellectual disability is more accurately considered a disability rather than a disease. Intellectual disability can be distinguished in many ways from
There are thousands of agencies around the world that provide assistance for people with developmental disabilities. They include state-run, for-profit, and non-profit, privately run agencies. Within one agency there could be departments that include fully staffed residential homes, day rehabilitation programs that approximate schools, workshops wherein people with disabilities can obtain jobs, programs that assist people with developmental disabilities in obtaining jobs in the community, programs that provide support for people with developmental disabilities who have their own apartments, programs that assist them with raising their children, and many more. There are also many agencies and programs for parents of children with developmental disabilities.
Beyond that, there are specific programs that people with developmental disabilities can take part in wherein they learn basic life skills. These "goals" may take a much longer amount of time for them to accomplish, but the ultimate goal is independence. This may be anything from independence in tooth brushing to an independent residence. People with developmental disabilities learn throughout their lives and can obtain many new skills even late in life with the help of their families, caregivers, clinicians and the people who coordinate the efforts of all of these people.
There are four broad areas of intervention that allow for active participation from caregivers, community members, clinicians, and of course, the individual(s) with an intellectual disability. These include psychosocial treatments, behavioral treatments, cognitive-behavioral treatments, and family-oriented strategies.[39] Psychosocial treatments are intended primarily for children before and during the preschool years as this is the optimum time for intervention.[40] This early intervention should include encouragement of exploration, mentoring in basic skills, celebration of developmental advances, guided rehearsal and extension of newly acquired skills, protection from harmful displays of disapproval, teasing, or punishment, and exposure to a rich and responsive language environment.[41] A great example of a successful intervention is the Carolina Abecedarian Project that was conducted with over 100 children from low socioeconomic status families beginning in infancy through pre-school years. Results indicated that by age 2, the children provided the intervention had higher test scores than control group children, and they remained approximately 5 points higher 10 years after the end of the program. By young adulthood, children from the intervention group had better educational attainment, employment opportunities, and fewer behavioral problems than their control-group counterparts.[42]
Core components of behavioral treatments include language and social skills acquisition. Typically, one-to-one training is offered in which a therapist uses a shaping procedure in combination with positive reinforcements to help the child pronounce syllables until words are completed. Sometimes involving pictures and visual aids, therapists aim at improving speech capacity so that short sentences about important daily tasks (e.g. bathroom use, eating, etc.) can be effectively communicated by the child.
Although there is no specific medication for intellectual disability, many people with developmental disabilities have further medical complications and may be prescribed several medications. For example, autistic children with developmental delay may be prescribed
Epidemiology
Intellectual disability affects about 2–3% of the general population. 75–90% of the affected people have mild intellectual disability. Non-syndromic or
History
Intellectual disability has been documented under a variety of names throughout history. Throughout much of human history, society was unkind to those with any type of disability, and people with intellectual disability were commonly viewed as burdens on their families.
Caliph Al-Walid (r. 705–715) built one of the first care homes for individuals with intellectual disabilities and built the first hospital which accommodated intellectually disabled individuals as part of its services. In addition, Al-Walid assigned each intellectually disabled individual a caregiver.[58]
Until the Enlightenment in Europe, care and asylum was provided by families and the church (in monasteries and other religious communities), focusing on the provision of basic physical needs such as food, shelter, and clothing. Negative stereotypes were prominent in social attitudes of the time.
In the 13th century, England declared people with intellectual disabilities to be incapable of making decisions or managing their affairs.
In the 17th century, Thomas Willis provided the first description of intellectual disability as a disease.[56] He believed that it was caused by structural problems in the brain. According to Willis, the anatomical problems could be either an inborn condition or acquired later in life.
In the 18th and 19th centuries, housing and care moved away from families and towards an
In the late 19th century, in response to Charles Darwin's
In 1905, Alfred Binet produced the first standardized test for measuring intelligence in children.[56]
Although ancient Roman law had declared people with intellectual disability to be incapable of the deliberate intent to harm that was necessary for a person to commit a crime, during the 1920s, Western society believed they were morally degenerate.[56]
Ignoring the prevailing attitude,
The publication of this book may be regarded as the first move towards the widespread adoption of the social model of disability in regard to these types of disabilities, and was the impetus for the development of government strategies for desegregation. Successful lawsuits against governments and increasing awareness of human rights and self-advocacy also contributed to this process, resulting in the passing in the U.S. of the Civil Rights of Institutionalized Persons Act in 1980.
From the 1960s to the present, most states have moved towards the elimination of segregated institutions.
By the mid-1970s, most governments had committed to de-institutionalization and had started preparing for the wholesale movement of people into the general community, in line with the principles of normalization. In most countries, this was essentially complete by the late 1990s, although the debate over whether or not to close institutions persists in some states, including Massachusetts.[64]
In the past,
Along with the changes in terminology, and the downward drift in acceptability of the old terms, institutions of all kinds have had to repeatedly change their names. This affects the names of schools, hospitals, societies, government departments, and academic journals. For example, the Midlands Institute of Mental Sub-normality became the British Institute of Mental Handicap and is now the British Institute of Learning Disability. This phenomenon is shared with mental health and motor disabilities, and seen to a lesser degree in sensory disabilities.[citation needed]
Terminology
Over the past two decades, the term intellectual disability has become preferred by most advocates and researchers in most English-speaking countries.[5][12] In a 2012 survey of 101 Canadian healthcare professionals, 78% said they would use the term developmental delay with parents over intellectual disability (8%).[65] Expressions like developmentally disabled,[66] special, special needs, or challenged are sometimes used, but have been criticized for "reinforc[ing] the idea that people cannot deal honestly with their disabilities".[67][68]
The term mental retardation, which stemmed from the understanding that such conditions arose as a result of delays or retardation of a child's natural development,
Usage has changed over the years and differed from country to country. For example, mental retardation in some contexts covers the whole field, but it previously applied to people with milder impairments. Feeble-minded used to mean mild impairments in the UK, and once applied in the US to the whole field. "Borderline intellectual functioning" is not currently defined, but the term may be used to apply to people with IQs in the 70s. People with IQs of 70 to 85 used to be eligible for special consideration in the US public education system on grounds of intellectual disability.[citation needed]
United States
- In North America, intellectual disability is subsumed into the broader term developmental disability, which also includes epilepsy, autism, cerebral palsy, and other disorders that develop during the developmental period (birth to age 18). Because service provision is tied to the designation "developmental disability", it is used by many parents, direct support professionals, and physicians. In the United States, however, in school-based settings, the more specific term mental retardation or, more recently (and preferably), intellectual disability, is still typically used, and is one of 13 categories of disability under which children may be identified for special education services under Public Law 108–446.
- The phrase intellectual disability is increasingly being used as a synonym for people with significantly below-average cognitive ability. These terms are sometimes used as a means of separating general intellectual limitations from specific, limited deficits as well as indicating that it is not an emotional or psychological disability. It is not specific to congenital disorders such as Down syndrome.
The American Association on Mental Retardation changed its name to the American Association on Intellectual and Developmental Disabilities (AAIDD) in 2007, and soon thereafter changed the names of its scholarly journals[77] to reflect the term "intellectual disability". In 2010, the AAIDD released its 11th edition of its terminology and classification manual, which also used the term intellectual disability.[78][79]
United Kingdom
In the UK, mental handicap had become the common medical term, replacing mental subnormality in Scotland and mental deficiency in England and Wales, until
In England and Wales between 1983 and 2008, the Mental Health Act 1983 defined "mental impairment" and "severe mental impairment" as "a state of arrested or incomplete development of mind which includes significant/severe impairment of intelligence and social functioning and is associated with abnormally aggressive or seriously irresponsible conduct on the part of the person concerned."[86] As behavior was involved, these were not necessarily permanent conditions: they were defined for the purpose of authorizing detention in hospital or guardianship. The term mental impairment was removed from the Act in November 2008, but the grounds for detention remained. However, English statute law uses mental impairment elsewhere in a less well-defined manner—e.g. to allow exemption from taxes—implying that intellectual disability without any behavioral problems is what is meant.
A 2008
Australia
In the past, Australia has used British and American terms interchangeably, including "mental retardation" and "mental handicap". Today, "intellectual disability" is the preferred and more commonly used descriptor.[89]
Society and culture
People with intellectual disabilities are often not seen as full citizens of society. Person-centered planning and approaches are seen as methods of addressing the continued labeling and exclusion of socially devalued people, such as people with disabilities, encouraging a focus on the person as someone with capacities and gifts as well as support needs. The
Until the middle of the 20th century, people with intellectual disabilities were routinely excluded from public education, or educated away from other typically developing children. Compared to peers who were segregated in
In the United States, the average lifetime cost of a person with an intellectual disability amounts to $223,000 per person, in 2003 US dollars, for direct costs such as medical and educational expenses.
Human rights and legal status
The law treats person with intellectual disabilities differently than those without intellectual disabilities. Their human rights and freedoms, including the right to vote, the right to conduct business, enter into a contract, enter into marriage, right to education, are often limited. The courts have upheld some of these limitations and found discrimination in others. The UN Convention on the Rights of Persons with Disabilities, which sets minimum standards for the rights of persons with disabilities, has been ratified by more than 180 countries. In several U.S. states, and several European Union states, persons with intellectual disabilities are disenfranchised.[92][93] The European Court of Human Rights ruled in Alajos Kiss v. Hungary (2010) that Hungary cannot restrict voting rights only on the basis of guardianship due to a psychosocial disability.[94]
Health disparities
People with intellectual disabilities are usually at a higher risk of living with complex health conditions such as
In the United Kingdom people with intellectual disability live on average 16 years less than the general population. Some of the barriers that exist for people with ID accessing quality healthcare include: communication challenges, service eligibility, lack of training for healthcare providers, diagnostic overshadowing, and absence of targeted health promotion services.[96][97] Key recommendations from the CDC for improving the health status for people with intellectual disabilities include: improve access to health care, improve data collection, strengthen the workforce, include people with ID in public health programs, and prepare for emergencies with people with disabilities in mind.[98]
See also
- Future planning
- History of psychiatric institutions
- IQ classification
- Intermediate Care Facilities for Individuals with Intellectual Disabilities
- Secondary handicap
- Severe mental impairment
- Intellectual disability and higher education in the United States
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Further reading
- Adkins, B.; Summerville, J.; Knox, M.; Brown, A. R.; Dillon, S. (2012). "Digital technologies and musical participation for people with intellectual disabilities". New Media & Society. 15 (4): 501–518. OCLC 829241491.
- Carey C. Allison (2010). On the Margins of Citizenship: Intellectual Disability and Civil Rights in Twentieth-Century America. Temple University Press.
- Rights of People with Intellectual Disabilities: Access to Education and Employment, bilingual reports on 14 European countries
- Dalton, A. J.; Janicki, Matthew P., editors (1999). Dementia, aging, and intellectual disabilities: a handbook. Philadelphia: Brunner/Mazel. p. 12. OCLC 39223703.
- The Definition and Prevalence of Intellectual Disability in Australia. Australian Institute of Health and Welfare paper.
- Harris, James C. (2010). Intellectual Disability: A Guide for Families and Professionals. Oxford University Press.
- 2001 New Zealand Snapshot of Intellectual Disability
- Kovago, Emese (2003). People with Intellectual Disabilities: from Invisible to Visible Citizens of the EU Accession Countries; archived copy.
- Endicott, Orville (1991). Persons with intellectual disability who are incarcerated for criminal offences: A literature review (PDF). Communications and Corporate Development, Research Branch. Correctional Service of Canada. Archived from the original (PDF) on 1 July 2013. Retrieved 30 June 2022.
- "John F. Kennedy and people with intellectual disabilities". Kennedy Presidential Library and Museum. Archived from the original on 21 January 2022.
- Jones, Jessica (December 2007). "Persons with intellectual disabilities in the criminal justice system: Review of issues". International Journal of Offender Therapy and Comparative Criminology. 51 (6). Sage: 723–733. S2CID 27995011.
- Petersilia, Joan (2000). "Invisible Victims Violence against persons with developmental disabilities". Human Rights. 27 (1). American Bar Association: 9–12. Archived from the original on 1 September 2000. Retrieved 12 July 2022.
- Smith, Philip (2010). Whatever Happened to Inclusion?: The Place of Students with Intellectual Disabilities in Education. New York: Peter Lang Publishing. OCLC 460711867.
- Søndenaa, Erik; Linaker, Olav Martin; Nøttestad, Jim Aage (September 2009). "Effects of the changes in legislation governing offenders with intellectual disabilities in Norway: A descriptive study". Journal of Policy and Practice in Intellectual Disabilities. 6 (3). International Association for the Scientific Study of Intellectual Disabilities: 229–235. ISSN 1741-1130.
- Wehmeyer, Michael L. (2013). The Story of Intellectual Disability: An Evolution of Meaning, Understanding, and Public Perception. Brookes Publishing.
External links
- The dictionary definition of intellectual disability at Wiktionary
- Facts about intellectual disabilities from the US Centers for Disease Control's National Center on Birth Defects and Developmental Disabilities