Overview of Intellectual Disabilities

Names matter. In disability services, the proper identification and naming of a disability provides the gateway to remove physical and social barriers that prevent individuals from expressing their capabilities (Melrose et al., 2015). Naming empowers individuals, but it also can have negative consequences. As described in the disability work by Melrose et al. (2015), history has had its share of discrimination towards those with disability. They note that before the 1900s, the word idiot was used throughout much of the world to describe a generally vague class of individuals who were not considered to be “normal.” Membership in this class was often assigned simply because individuals were thought to deviate from “normative” abilities.

Terminology shifted over the years, highlighting a social construction of the notion of intellectual disability. The term “feeble minded” became common and then divided into three categories: moron, imbecile, and idiot (Melrose et al., 2015). These predated the categories of mild, moderate, and severe/profound mental retardation, and, after the development of IQ, became the categories of disability in that system (Kastner & Walsh, 2009; Melrose et al., 2015). This term fell out of favor as the field began to view these challenges through a developmental lens, specifically that those with intellectual disabilities were developmentally arrested or had a slow developmental rate (Melrose et al., 2015). The idea of “slowness” then gave way to the term mental retardation.

The American Association on Mental Deficiency (now the American Association on Intellectual and Developmental Disabilities or AAIDD) issued its new diagnostic and classification manual in 1961 (Melrose et al., 2015), and this manual replaced the terms moron, imbecile, and idiot with mild, moderate, severe, and profound mental retardation (Melrose et al., 2015). Additionally, the manual included the category borderline mental retardation for those whose IQ test scores lay between one and two standard deviations below the average IQ of 100 (Melrose et al., 2015). IQ standards changed 20 years later to articulate that people with IQs from 70 to 85 were no longer considered to have mental retardation (Melrose et al., 2015). These changes of criteria and categorization further demonstrate that intellectual disability is largely influenced by social constructs of ableism.

The term mental retardation is no longer used because of the pejorative nature of that label and because it does not capture the real phenomena experienced by the individual. Current terminology that attempts to be more representative include developmental disability, which is an umbrella term to include physical disability like epilepsy, cerebral palsy, autism and intellectual disability (Melrose et al., 2015); however, this term can be confusing because it lacks specificity. Mental disability is another term; however, it can lead to confusion between the ideas of mental illness and intellectual impairment (Melrose et al., 2015). Learning disability refers to the specific learning disabilities that impact learning but do not denote intellectual impairment (e.g., dyslexia) (Melrose et al., 2015). The term developmental delay has been used when discussing intellectual impairment. However, while individuals with intellectual impairment commonly experience developmental delays, not all individuals with developmental delays experience intellectual impairment. In summary, naming the experiences of the child should be specific and support their self-determination. (Melrose et al., 2015).

For the behavioral health practitioner, the DSM-5/DSM-5-TR (APA, 2013; APA 2022) can pose to be a stumbling block. This diagnostic manual requires deficits in intellectual functioning and limitations in adapting to environmental demands prior to age 18. According to the DSM-5-TR, a person with an Intellectual Developmental Disorder must be determined to have deficits in intellectual functions confirmed by both clinical assessment and individualized standardized intelligence testing with onset of intellectual and adaptive deficits occurring during the developmental period before the chronological age of 18. There are several well-known cognitive assessments which are discussed later in this chapter. IQ score alone is not sufficient to make the diagnosis of IDD. The youth must also have significant deficits in adaptive functioning that result in failure to meet developmental and sociocultural standards for personal independence and social responsibility. Ideally, adaptive functioning should be formally tested, and there are several well-known standardized measures of adaptive functioning that are discussed later in this chapter. Considerations of cultural and community or environmental context must also be part of a valid assessment.

For behavioral health practitioners in school settings, the Individuals with Disabilities Education Act (2004) is a federal law that provides funding to local educational agencies to educate students with disabilities. Intellectual Disability is one of 13 disability categories recognized by this law. “Child Find” is a component of the law that requires states to have a comprehensive system to locate, identify, and refer as early as possible all children (birth to 21) with disabilities, for early intervention or special education services. Part C of IDEA pertains to children birth to two years of age. Part B of IDEA pertains to children through age 21. The criteria for Intellectual Disability under IDEA is nearly identical to the DSM-5-TR criteria. To be eligible as a child with an Intellectual Disability, there must be evidence of each of the following criteria (Individuals with Disabilities Education Act, 2004): “means significantly subaverage functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period that adversely affects a child’s educational performance.” According to the ECEA 2.08 (4), a child with an Intellectual Disability “shall have reduced general intellectual functioning, existing concurrently with deficits in adaptive behavior and manifested during the developmental period, which prevents the child from receiving reasonable educational benefit from general education.”

State regulations further specify the process of identifying IDEA. For example, the Colorado Department of Education (2013) specifies the following criteria:

To be eligible as a child with an Intellectual Disability, there must be evidence of each of the following criteria: (1) A full-scale score of 2.0 or more standard deviations (SD) below the mean on individually administered measures of cognition; and (2) A comprehensive adaptive skills assessment based on a body of evidence that reflects the child’s social, linguistic and cultural background. The level of independent adaptive behavior is significantly below the culturally imposed expectations of personal and social responsibility. The body of evidence shall include results from each of the following: a. A full-scale score of 2.0 or more SD below the mean on a standard or nationally normed assessment of adaptive behavior; b. An interview of parents; and c. Observations of the child’s adaptive behavior that must occur in more than one educational setting. A discrepancy must occur in two or more domains related to adaptive behavior in more than one educational setting. (3) An Intellectual Disability as described above, prevents the child from receiving reasonable educational benefit from general education, as evidenced by the following criteria: a. A deficiency in academic achievement, either as indicated by scores of 2.0 or more SD below the mean in a formal measure of language, reading, and math, or a body of evidence on informal measures when it is determined that reliable and valid assessment results are not possible due to the student’s functioning level.

An Intellectual Disability as described above, prevents the child from receiving reasonable educational benefit from general education due to the student’s functioning level (Individuals with Disabilities Education Act, 2004). At times individuals with IDD may be served under other special education categories, with Multiple Disabilities being most often:

Multiple disabilities means concomitant impairments (such as intellectual disability-blindness or intellectual disability-orthopedic impairment), the combination of which causes such severe educational needs that they cannot be accommodated in special education programs solely for one of the impairments. Multiple disabilities does not include deaf-blindness (Individuals with Disabilities Education Act, 2004).

Prevalence of Intellectual Disabilities 

Consistent with the bell curve, about 2% of the population falls into this category. Of those who do meet criteria for IDD, the vast majority (85%) would fall into the mild severity level for each domain (Alim et al., 2014; Emerson & Hatton, 2007; Wallender, Dekker & Koot, 2006): have the potential to reach 3rd to 6th grade skill level in reading, writing, and math and may be employed and live independently. About 10% would be considered to have a moderate intellectual disability, being able to master basic reading, writing and self-care with some supervision (Alim et al., 2014; Emerson & Hatton, 2007; Wallender, Dekker & Koot, 2006). About 5% would be considered at the severe level of IDD, with limited functional self-care skills and requiring oversight of daily environment and activities. Less than 1% are profoundly disabled, needing intensive support (Alim et al., 2014; Emerson & Hatton, 2007; Wallender, Dekker & Koot, 2006).

Although the majority of children and adolescents who meet criteria for IDD do not meet criteria for another mental health disorder, a disproportionate percentage (35 to 49%) of children with IDD do (Emerson & Hatton, 2007; Wallender, Dekker & Koot, 2006). Emerson and Hatton (2007) found in a large sample of British children a higher likelihood of autism spectrum disorder, ADHD and conduct disorders occurring among children with IDD compared to those not diagnosed with IDD. This is similar to what has been found in other studies.

Prevalence of co-occurring mental health disorders is significantly higher than among children without IDD. Several studies have shown that the prevalence rate of other mental health disorders is about 40% among children and adolescents with an IDD diagnosis. Emerson and Hatton (2007) found a 36% prevalence rate among a large sample (N= 7977) of British children and adolescents with IDD compared to those without an IDD diagnosis. Any conduct disorder was at 20% compared to 4% for children with no IDD diagnosis in the sample. Any anxiety disorder was at 11% among the children with IDD compared to 3% among children with no IDD diagnosis.

How Intellectual Disability Develops in Youth

Intellectual Developmental Disorder/Intellectual Disability is not a single or isolated disorder; the overall causes of intellectual disability are most often attributed to genetic or chromosomal conditions or prenatal teratogens or other insults. There are several hundred genetic causes of IDD. IDD is noted in a wide range of neurodevelopmental conditions including autism spectrum disorders (ASD), Fragile X syndrome (FXS), Rett syndrome, tuberous sclerosis, and a spectrum of non-identified etiologies (idiopathic IDD), as is the case for Javier. The most common single gene cause of IDD is FXS; the most common chromosomally caused disorder is Down Syndrome. Fetal Alcohol Spectrum accounts for the most cases of IDD due to prenatal exposure (Siegal et al., 2020; Toth et al., 2021). A review of etiology of intellectual disability by Toth et al (2021) present genetic and chromosomal influence numbers: Down Syndrome (1 in 800 newborns); Fragile X syndrome (1 per 4000 males; 1 per 8,000 females); phenylketonuria PKU (1 in 13,500 to 1 in 19,000 newborns). They also note environmental influences such as exposure to teratogens during fetal development; Fetal Alcohol Spectrum Disorders (1% of live births); FAS (.5 to 2 per 1000 births); prenatal and perinatal infections such as toxoplasmosis, herpes; difficulty during labor and delivery, asphyxia are the most common causes of IDD. Postnatal up through adolescence including accidents that result in head injury or loss of consciousness and illnesses such as meningitis (Toth et al., 2021). The primary risk factor was equally distributed across prenatal (including genetic), perinatal, and postnatal causes, although it was unknown in almost half of the cases (Siegel et al., 2020, p. 471).

Developmental Systems Considerations for These Disorders

Children with IDD are often identified as having delays in core areas of functioning and receive support services through local agencies between birth and age two. Indeed, early identification of IDD offers the opportunity for intervention. Funding for early intervention is provided by IDEA Part C, which covers Early Intervention to Infants and Toddlers with Disabilities. Part C requires states to establish “A comprehensive child find system . . . including a system for making referrals to service providers . . . that ensures rigorous standards for appropriately identifying infants and toddlers with disabilities for services…”(IDEA, 2004). Research suggests a relationship between motor skills in early childhood and cognitive development (Piek, Dawson, Smith, & Gasson, 2008) and a relationship between motor and language skills in early childhood and cognitive development among children with typical and atypical development (Houwen et al., 2016).

Children with IDD often experience delays in the acquisition of language abilities in early childhood; such delays are heterogenous. Some researchers posit that language and motor differences in early childhood often contribute to social challenges of children with IDD (Piek et al.; Houwen et al.). With consideration to Javier’s childhood history, he began getting support with his speech and language development needs at age two when his parents noticed that he did not speak much and rarely used words to communicate, outside of calling for his mother or father. Javier’s parents did notice that his development was slower than the children in their family. After speaking with his pediatrician, Javier’s parents explored early intervention services to support his developmental delays, centered on support from a speech and language pathologist.

Javier’s parents noticed progress in his speech and language development. Javier entered pre-K with his neighborhood public school. Javier’s teachers noticed that he often stayed to himself and had some difficulties with gripping pencils and crayons. Javier’s teachers noticed that he got upset often when taken away from an interest activity. The educators in his school noticed that it took him longer than many other students to gather himself during these episodes. At age 6, Javier was able to show some mastery of toileting. Javier entered kindergarten at age 6. He enjoyed being at school with other students. In kindergarten, his social interaction with his peers did not significantly change from his time in pre-K. His kindergarten teacher recommended that he seek additional support at a local outpatient mental health provider due to his anger outburst. He was later identified, by an outpatient mental health provider, with Intermittent Explosive Disorder (IED). This was based on his home life and his frequency of fighting with his younger siblings or breaking his toys when he was upset. At age 9, Javier was given his diagnosis of IDD based on the continued delays in milestones when compared to his peers, like his inability to tie his shoes, his naïveté towards social engagement with peers and adults, challenges with task completion at home, and difficulties completing classwork and homework assignments at school. His diagnosis was given by his pediatrician.

Javier’s parents faced communication challenges in his care with both school and medical professionals, due to the language barrier and the fact that the family was still trying to navigate living in an urban environment in the mainland part of the United States. Support for family members is critical throughout this process. Raising a child is not easy, let alone those with more adaptive needs in a world that may not be as accessible as it needs to be. As Javier progressed through middle school and high school, he showed uneven learning patterns, limited problem-solving skills orthopedic impairments (hand formation and fine motor skills) and sensory preferences for tight clothing and dim lighting.

In addition to a developmental understanding of IDD it is prudent for practitioners and researchers to consider intersecting identities. A complete review is beyond the scope of this chapter. That said, a brief introduction to experiences across race and ethnicity and LGBTQIA+ youth is considered. Regarding experiences across race and ethnicity, health disparities in BIPOC individuals with IDD exist, as well as an oppressive history of weaponizing IQ tests for the purposes of segregating BIPOC youth in schools. Health disparities are particularly apparent when youth transition to adult service systems (Lotstein et al., 2010), and this holds true with youth with IDD. Scott & Havercamp (2014) report that racial/ethnic minority adults experience disparities in healthcare utilization. In particular, Hispanic American adults with IDD are most underserved in health care. Lotsein et al., (2010) suggest that these disparities emerge as a result of insurance-related problems, living in low-income/low-resource communities, or other sociocultural factors. Additionally, considerations of sexuality and provision of sex education is often missing in discussions and services for youth with IDD. A common myth about youth with IDD is that they are “asexual” or do not have a sexuality. This is a harmful assumption for all youth with IDD, and especially so for LGBTQ youth with IDD. This oversight can lead to exclusion from sex education or HIV prevention programs, placing these youth at greater risk for contracting HIV (Duke, 2011; Wilson et al., 2016).

Assessment of Intellectual Disabilities

The American Association of Intellectual Disability (2021) defines intellectual disability as a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 22 (AAID, 2021). The following guidelines are presented to identify intellectual disability:

1. Intellectual functioning, also called intelligence, refers to general mental capacity, such as learning, reasoning, problem solving, planning, judgment, and academic and experiential learning. One way to measure intellectual functioning is an IQ test. Generally, an IQ test score of around 70 to 75 indicates a limitation in intellectual functioning.

2. Adaptive behavior is the collection of conceptual, social, and practical skills that are learned and performed by people in their everyday lives.

3. Conceptual skills include language and literacy; money, time, and number concepts; and self-direction.

4. Social skills include interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, the ability to follow rules/obey laws, and the ability to avoid being victimized.

5. Practical skills include activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, and use of the telephone.

Standardized tests can also determine limitations in adaptive behavior. But in defining and assessing intellectual disability, the AAIDD stresses that additional factors must be taken into account, such as the community environment typical of the individual’s peers and culture. Professionals should also consider linguistic diversity and cultural differences in the way people communicate, move, and behave. Finally, assessments must also assume that limitations in individuals often coexist with strengths and that a person’s level of life functioning will improve if appropriate personalized supports are provided over a sustained period.

AAIDD (2021) has created a four-tier level of need that should match what the person needs to live most independently. The level of need suggests the level of support needed to function fully. Levels of need range from intermittent assistance only during transitions or larger stressful events to pervasive. Some research exists suggesting that with appropriately matched and sustainable personalized supports, the life function of the persons with intellectual disability generally will improve (Luckasson et al., 2002, as cited in Schalock, Luckasson, & Shogren, 2007, p. 118). This moves us from a deficit understanding of disability to a normative understanding that disability is part of the human condition, and every human being needs support. See Table 5-1 for AAID definitions of each level.

The present authors advocate for a comprehensive review of records, multiple interviews, observations, and standardized testing when assessing for intellectual disabilities. Assessment of intellectual disabilities relies on formal testing for intelligence and adaptive functioning. Common symptoms of IDD include presentation of language, problem solving, decision making and reasoning abilities that are well below other children of the same chronological age. Alim and Hearn (2014) point out that there is a wide range of cognitive profiles and etiologies presented among children who meet criteria for IDD. Traditionally, a formal IQ score below 70 had been considered a threshold score that resulted in the diagnosis of earlier DSM labels of mental retardation. This cutoff score is no longer listed in the criteria of DSM-5, which also changed the name to intellectual disability disorder. DSM-5 places more emphasis on the child’s adaptive functioning in addition to IQ scores and a more comprehensive assessment (American Psychiatric Association, 2013).

Three specific criteria must be met for a DSM diagnosis of intellectual disability: 1) deficits in intellectual functioning, 2) deficits of adaptive functioning, and 3) onset before age 18. The DSM-5 no longer specifies a specific IQ score as in the past, although diagnosis requires clinical assessment and individualized standardized intelligence testing that demonstrates “deficits in intellectual functions, such as reasoning, problem solving, planning, abstract thinking, judgment, academic learning and learning from experience…[and] deficits in adaptive functioning that result in failure to meet developmental and sociocultural standards for personal independence and social responsibility” (APA, 2013) The criteria further specify that limits in adaptive functioning must exist in one or more daily activity.

Child/Client Interview Questions

Practitioners are encouraged to modify and adjust questions in culturally responsive and developmentally appropriate ways.

• What are your strengths? What do you do well?

• What do you do for fun?

• Passions?

• Tell me about your friends.

• Tell me about things that are easy at school?

• Tell me about things that are hard?

• Tell me about things that are hard at school?

• What do you like to do with your friends/siblings?

• What do you like to do alone?

• How can you tell if you feel happy? Mad? Sad?

• How can you tell if someone else is mad? Happy?

• What are your mornings like before you go to school?

• What is your favorite thing about school? Least favorite?

Family/Caregiver Interview Questions

This interview is designed to obtain a comprehensive history of development and current functioning. When exploring adaptive functioning, the focus should be on what the client can do independently.

• Child strengths/challenges?

• Developmental history? (emphasis on developmental milestones and pre-natal, birth, and post-natal info)

• Social skills ages 2-4?

• Family history of disabilities?

• Medications?

• Interactions with others, such as siblings, caregivers, family members, friends?

• Feeding/Eating?

• Sleeping?

• Toileting?

• Navigating the community?

• Extra-curriculars?

• Group activities vs. individual?

• Can your child follow social conversation and/or directions?

• Are there any aspects of daily living that your child requires more support with compared to others?

• What’s a typical morning like for your family?

• What’s a typical afternoon/night like for your family?

• What are your hopes for your child?

School Personnel Interview 

Information about the child’s physical problems, peer interactions, social skills, and emotional state can be productively used in conjunction with more formal assessment methods.

• Student strengths in conceptual, practical, and social domains?

• Student weaknesses in conceptual, practical, and social domains?

• Academic performance

• Student interests? Passions?

• How do they interact with peers in specials and on the playground?

• Does the child behave differently in group work than in individual work?

• Can the child follow social conversation and/or directions?

• How independent is the child in different situations compared to their peers? (Snack-time/lunch, toileting, in-class tasks)

Suggested Observations in Naturalistic Settings

The focus of observations is to determine how the client navigates their world and what they can do independently and what requires support. It is recommended to complete observations across multiple settings, including home, school, and community environments, looking for the presence or absence of age-appropriate adaptive behaviors:

• 3-5 years: communication, self-care, social skills, and physical development

• 6-13 years: communication, self-care, social skills, home living, community use, self-direction, health and safety, functional academics, and leisure

• 14-21 years: communication, self-care, social skills, home living, community use, self-direction, health and safety, functional academics, leisure, and work

Suggested Rating Scales and Measurement

A comprehensive adaptive skills assessment is based on a body of evidence that reflects the child’s social, linguistic, and cultural background. The measurement of adaptive behavior typically includes surveys of the child’s behavior and skills by trained personnel in a variety of settings, including his or her classroom, school, home, and neighborhood or community. Because it is not possible for one person to observe a child in all of the key environments, measurement of adaptive behavior should depend on feedback from a number of people. Areas of focus include the following:

• Communication: Interacting with others, using expressive and receptive language, writing, and listening, etc.

• Self-Care: Eating, dressing, hygiene, toileting, grooming, etc.

• Home Living: Caring for clothes, housekeeping, performing property maintenance, preparing food, cooking, budgeting, etc.

• Social: Getting along with others, being aware of other people’s feelings, forming relationships.

• Motor: Fine motor, gross motor, sensory motor, etc.

• Practical Academics: Literacy and numeracy, etc.

• Community: Accessing the community, transportation, shopping, safety, medical, etc.

Parents have many chances to observe their child in a variety of settings; thus, they are usually the best sources of information about adaptive behavior. In addition to parents, teachers and other educators are well poised to provide valuable information on activities of daily living. The most common method for gathering information about a child’s adaptive behavior skills in the home environment is to have a school social worker, psychologist, counselor, or someone trained to use the assessment interview the parent using a formal adaptive behavior assessment rating scale.

Adaptive Skills. The follow are common assessments of adaptive skills, all with different requirements and specifications for administration:

• Adaptive Behavior Assessment System®-Second Edition (ABAS®-Second Edition) is a complete assessment of adaptive skills functioning and assesses all 10 specific adaptive skills areas specified in the DSM-IV (ages 0-89).

• Adaptive Behavior Evaluation Scale-Revised-Second Edition (ABES-R2) provides a measure of adaptive behaviors that are necessary for success Diagnostic Adaptive Behavior Scale released (2013) and provides a comprehensive standardized assessment of adaptive behavior (ages 4-21).

• Scales of Independent Behavior-Revised (SIB-R) is a comprehensive, norm-referenced assessment of adaptive and maladaptive behavior (ages infancy-80+).

• Vineland Adaptive Behavior Scales-Third Edition (Vineland-III) is a measure of personal and social skills needed for everyday living (ages birth-90+).

Cognitive Abilities. Cognitive abilities are generally measured using standardized intelligence tests or cognitive ability tests. Although the use and misuse of intelligence tests has come under scrutiny over the years (Gould, 1996), intelligence or that said, “IQ tests” are thought to be predictive of IQ stable around ages 7 to 8. There are many different concerns about how intelligence tests, also known as cognitive abilities tests, obtain participants used for normative data. Historically, we know that IQ tests exclude people with intellectual disabilities among the participants; thus, the representation among the participants can be a concern (Sansone et al., 2014). Despite the limitations, IQ tests among those with IDD do present a significant floor effect of the scores. This stratification of IQ testing is used to the exclusion of those with intellectual disabilities for the standardization of IQ test. It can be argued that generalizability of the IQ test is not present since all members of the population are not representative. For this reason, the assessment of IQ among those with IDD is constantly an area of exploration for researchers. Mungkhetklang et al. (2016) explored the non-verbal cognitive abilities of those with IDD along with typically abled (TA) people, where there were not any significant differences among in test scores on non-verbal cognitive abilities in the areas of working memory when verbal language is not required. Mungkhetkland et al. (2016) found that there are clear differences between IDD and TA individuals in task completion in the test where IDD individuals relied on visual memory and TD individuals relied on their vocabulary knowledge. This finding is important as we consider the design of an IQ test, specifically if test administration relies on verbal instructions. The goal of an IQ test is to measure cognitive abilities among participants; if the test does not account for the disparities between verbal instructions and non-verbal instructions, it can be argued the test cannot be representative of the true cognitive abilities.

Common assessments of cognitive skills include the following:

• Bayley Scales of Infant and Toddler Development, 4th Edition (Bayley-4) is a comprehensive assessment tool for determining developmental delays in children. The test may be administered to young children across a broad range of developmental levels (ages 16 days to 42 months).

• Comprehensive Test of Nonverbal Intelligence, 2nd Edition (CTONI-II) is a nonverbal measure of general intelligence among children and adults. The test is designed to evaluate a full range of cognitive abilities without the use of verbal language and is used for those who may have significantly lowered scores on other tests that rely on oral and written language. It also accounts for any impairment of language or motor abilities (ages 6 years to 89 years, 11 months).

• Differential Ability Scales, 2nd Edition–Early Years Form (DAS-II) is a comprehensive, individually administered, clinical instrument for assessing the cognitive abilities that are important to learning (ages 2 years, 6 months to 17 years, 11 months).

• Kaufman Assessment Battery for Children, 2nd Edition (KABC-II) is a norm-referenced, individually administered measure of cognitive ability, appropriate for children and adolescents (ages 3 to 18 years).

• Mullen Scales of Early Learning (Mullens) provides a complete picture of motor development and cognitive ability in infants and toddlers. This assessment pinpoints strengths and weaknesses, assessing school readiness and understanding overall abilities (ages birth to 68 months).

• National Institutes of Health Toolbox Cognitive Battery (NIH-TCB) is a battery of validated computer-administered cognitive tests with utility across childhood, adolescence, and adulthood.

• Stanford Binet, 5th Edition (SB-5) is a standardized assessment of cognitive abilities across the life span (ages 2 to 85+ years).

• Wechsler Intelligence Scale for Children®, 5th Edition (WISC-V) identifies key cognitive strengths and weaknesses related to learning disabilities, executive function, attention disorders, TBI, intellectual disabilities, and giftedness (ages 6 years -16 years, 11 months).

• Wechsler Preschool and Primary Scale of Intelligence, 4th Edition (WPPSI-IV) is a measure of cognitive development for preschoolers and young children (ages 2 years, 6 months to 7 years, 7 months).

• Wechsler Adult Intelligence Scale, 4th Edition (WAIS-IV) is an individually administered and standardized measure of cognitive ability for adults (ages 16 years to 90 years, 11 months).

• Universal Nonverbal Intelligence Test, 2nd Edition (UNIT-II) is a norm-referenced, individually administered, non-verbal test of intelligence for individuals who have speech, language, or hearing impairments; have different cultural or language backgrounds; or are verbally uncommunicative (ages 5 to 21 years).

• Woodcock-Johnson Tests of Cognitive Abilities, 4th Edition (WJ IV, COG) is an individually administered, norm-referenced assessment of intellectual ability (ages 2 to 90+ years). 

There is a lack of consensus in both clinical and research practices on which assessment of cognitive abilities is best for identifying and progress monitoring children with IDD. There are well known issues with many of these tests in differentiating in the lower ability ranges. These are commonly known as “flooring effects.” Recent efforts have been made to utilize a transformation of z-scores termed “deviation scores” on the SB-5 to provide clinically meaningful information about variations in cognitive abilities of individuals with significant IDD (Sansone et al., 2016). The ongoing research on the NIH Toolkit is in validation phases and is designed to improve its utility for progress monitoring (Hessl et al., 2016). The severity of the DSM IDD diagnosis is to be specified as mild, moderate, severe, or profound for each of three domains: conceptual, social, and practical. The DSM-5 lists narrative criteria for each domain and a clinical determination of which level for conceptual, social, and practical functioning is to be specified as part of the diagnosis.

Intervention

Early and ongoing intervention is critical in relation to the severity of IDD. There is consensus that intervention that is intensive and multi-dimensional in the first five years increases the potential intellectual developmental trajectory over the lifetime of the individual. In addition, continued intensive intervention working directly with clients with IDD has the best outcomes for continued independent functioning and productivity over the lifetime of persons with IDD. There is great disparity in who receives effective interventions with low-income families less likely to receive early and ongoing intervention. Clinical work with children with an intellectual disability and another disorder should be similar to clinical work with any child or adolescent with this disorder. As always, we will need to match our evidence-based approach to the additional disorder (e.g., anxiety or depressive disorders or disruptive behavior disorder) with the needs and capacities of the child or adolescent. A functional behavioral analysis can be very useful as it will reveal the antecedents and existing reinforcers or negative consequences that the child experiences in relation to the behaviors and emotions associated with the mental health issue. If we scaffold desired behaviors that we wish to teach, we can help our client learn more complex skills.

An integrative approach is most helpful when working with children and adolescents who meet criteria for IDD and another mental health disorder. Including the family and school or other service contexts in ensuring that positive behaviors get reinforced consistently across contexts will increase the likelihood that newly acquired desirable behaviors will be maintained. A simplified approach to psychoeducation and skill building associated with cognitive behavioral approaches to anxiety, depression, PTSD, or disruptive behavior disorders will allow us to use the same techniques with the child or adolescent in a way that accommodates their level of intellectual and adaptive functioning.

Lawton and Aman (2014) point out that Labov’s research during the 1970s on effectiveness of intensive early intervention using Applied Behavioral Analysis demonstrated an increase in IQ scores, and, for some children, IQ and adaptive functioning moved into the normal range. Witwer, et al. observe that this degree of change has not been shown among children with IDD who are not on the autism spectrum. Limited research exists on the effectiveness of clinical practice, with 30 to 40% of children with IDD also meeting criteria for another mental health disorder (Soltau et al., 2015; Toth et al., 2021). One study of a large sample of parents found that only a small percentage got helpful treatment. Parents found clinicians not well prepared to work with their children (Soltau et al., 2015). Werner and Stawski (2012) conducted a comprehensive literature review of research from 1995 that examined training of professionals including social workers and counselors in regard to working with children and adolescents who are dually diagnosed with both IDD and another mental health disorder. Their review revealed that little specific attention to this population is given in the education of professionals who work with children in behavioral health. In the UK, mental health services for individuals with IDD are chiefly provided through specialist IDD services; this is not true in the U.S.

Due to the heterogenous nature of IDD treatments, interventions are best selected to match the unique needs of the individual. The authors encourage a focus on self-determination in all aspects of intervention. Ryan and Deci (2017) coined self-determination theory, an idea that explores motivation, autonomy, rewards for oneself, and interpersonal and intrapersonal interactions among families, schools, and societal groups and cultures. Differences among social norms, cultural beliefs, and access to resources based on societal constructs are considerations when taking a self-determination theory approach, especially with those who live with intellectual disabilities. Shogren et al. (2017) explore the value of using self-determination theory for those living with intellectual and developmental disabilities, related to the basic psychological needs of autonomy, competence, and relatedness as applied to educational, vocational, and social interactions. Below is a non-exhaustive list of common interventions and practices:

• Center-based educational programming

• Alternate educational assessments

• Functional academics

• Adaptive skill instruction

• Safety skill instruction

• Social skill instruction

• Mental health services

• Comprehensive sexual education

• Speech therapy

• Occupational therapy

• Physical therapy

• Reverse inclusion

• Transition services

• Vocational training

Intellectual Disabilities are a heterogonous group of conditions characterized by challenges in adaptive functioning and IQ two standard deviations below the mean. Individuals with ID benefit from school and community supports and can and do live happy and fulfilled lives. Assessment and intervention practices should center self-determination.

Clinical Dialogues: Intellectual Disability and Self-Determination in Practice

Sean E. Snyder, LCSW: We have three psychologists who work in different capacities related to intellectual disability service. Considering our topic of intellectual disability, what is it like to engage with families, who oftentimes come in with some concerns about school performance or activities of daily living? How do they even get to you?

Jessica Reinhardt, PhD: Lots to unpack in that question. To start, I think when we’re talking about any psychopathology, in particular developmental psychopathology, there is an element of grief that comes with the process for families, to have a child being identified for getting services. And for parents, very often there’s a shift in the entire life expectancy for their child, not the vision they had during pregnancy or during their adoption process or however they came to be parents. I think one of the first things that comes to mind on engagement is really the importance of family-school partnership or family condition partnership. Let the parents and caregivers and guardians have spaces to have a voice in the process. Equally of importance is having the individual with IDD have a voice, and that is something that we know historically has been taken away from that population, more so often than other populations. For me, one of the biggest themes with engagement would be absolutely honoring the lived experience of the client and the family.

Pete Gladstone, PhD: By the time we’re seeing a lot of children with concerns of intellectual disability in our clinic, it’s often because other answers haven’t worked out, or attempts with intervention haven’t really been successful. So, parents are really wondering what’s going on and by the time they get to us, we’re seeing parents who are kind of hoping for intellectual disability diagnosis. It might actually provide some answers and help them out. So, on the one hand, we might be seeing them changing their expectations and feeling very disappointed, and on the other hand, we also have to remember that a lot of times these kinds of diagnoses can be really helpful for them in providing answers. That’s something that I’ve been really trying to balance, not trying to sugarcoat anything for them and really helping them understand exactly what’s going on, so that they can get the best services possible.

Katey Burke, PhD: I always try to start from a place, especially when considering education, that disability is a natural part of the human experience. That’s what’s written into the Individuals with Disabilities Education Act and really that’s what underpins my view on special education, support and disability as a whole. Most, if not all of us, will experience some form of disability at some point in our lives. And we recognize that often there have been and continue to be stigmas and lower expectations placed for people with disabilities, especially those who have more significant support needs. It’s an understanding to not approach from a deficit-based model, but instead focusing on a strength-based model that is focused on individualized supports. From the beginning that would be my biggest piece with engagement: really valuing the input of the family and the person themselves. Understand, too, that as a partner, you’re there to look at the whole child and support the whole child, and that support is natural.

Snyder: I love that, going beyond the ableism bias. Children get to providers via different ways. It could be through primary care, it can be through the school, or, as Pete said, sometimes they’ve been through so much already, and they’re looking for answers. So how do you prepare families for this process where there can be a lot of evaluation that might go on, a lot of school observation?

Burke: Always take ourselves back to a place of plain language and communicating like humans, instead of in our practitioner or clinician speak. We’ve developed all of these acronyms; we talk about a lot of terminology and categorization. Understand that when you start throwing all of these terms at families, that can already put up a wall and a barrier, and it can also create a power dynamic where the family then feels less comfortable communicating and sharing openly. With that aside, I would say, starting with plain language is a core tenet that we should all be sure to focus on. Two other pieces I would add. One would be an overview of the process, deciding what detail is necessary to go into at the time, because the reality is that there is going to be a lot of detail. There’s going to be a lot of paperwork, and that can be overwhelming. Start with what’s the high-level overview that will help them understand the process as a whole, before going into the nuances that will be part of each step. The second piece, I would say, would be to consider connecting them with people who are trained to support families, especially parents and guardians, as they go through this process. So, IDEA (there I go with my acronyms!) provides funding for parent training and a technical assistance center. It would be possible to connect families and parents or guardians either virtually or in person at a place that they can talk with people who have materials and resources on exactly this stage in the process of a potential disability identification.

Reinhardt: When I think about having initial conversations with families, I believe that your feedback begins with your first conversation, so use counseling micro skills. When a parent says something, I will reflect it back to them using some of the clinical language, connecting to plain language. Perhaps they’re describing some things where the child’s having trouble with some self-care and orienting in the neighborhood, and I’d say “I’m hearing you talk about that some of the bedtime routine around hygiene is really hard, and it’s different than your other kid. And you worry about them waiting for the bus. We refer to those things as adaptive skills or activities of daily living.”

Snyder: A lot of clinical practice is reminding yourself that you have these micro skills, and they are so powerful. I love that, about getting feedback and making sure our biases aren’t coming in and that we’re actually accurately representing what they’re saying.

Ok, now the technical stuff. How do you prepare yourself for doing assessments and meeting the family where they are?

Reinhardt: So, I’m going to start with a controversial statement on this topic. Sometimes depending how old the child and purpose of the evaluation, I change what I’m going to do a little bit. Sometimes I will choose something that potentially could be harder for the child with testing, so the worse their scores look, the more services and funding their family gets to support their life. That’s a controversial statement, but that’s a reality. Even though I’m all about strengths-based work, and I care about that so much, sometimes we’re really trying to highlight deficits to get services that the child needs. Normally, though, I want to get a very robust whole picture, where there’s a profile of strengths and challenges.

Burke: There’s a difference of the evaluation and the opportunities for a child. The student’s interests and preferences may not always be evident through more standardized assessments; interviewing the child about specific topics or those who are close to the child is an important piece. It can be a powerful tool when planning what’s the appropriate path to take with supports and interventions and those types of things.

Snyder: So, let’s say I’ve picked up an evaluation report. How do I even start to read it?

Reinhardt: My first recommendation is to look to see if there were any strengths in the standardized scores and connecting those with interests because you’re going to use those to springboard those areas of challenge. I keep an eye out for weaknesses around toileting, eating, sleeping, and eloping because they present safety risks. Those are more adaptive skills, and the adaptive skills can be most salient for day-to-day activities. I would look to see if the report has had multiple informants, does it have the teacher, family, other influential folks. This gives a broad understanding across domains and then getting a multidimensional picture of their preferences.

The people on the report are people that I’m going to want to keep in touch with, that I’m going to want to check in with to make sure we were taking a team approach. Family school partnership is so important. Knowing the providers in the child’s world is helpful because you probably have crossover in what you are working on, and if all those people have a shared vocabulary, think about what that does for reinforcement if they hear the same thing in two places. The other part that underscores this: cultural humility and cultural relevance is essential. Whatever you are reading and planning for intervention, view through the lens of culture.

Snyder: What would you say are foundational approaches you take with intervention then, knowing that you are going to get lots of feedback along the way?

Burke: Pete and I both have interest in research on self-determination, and we know that supporting self-determination has strong impacts on a student’s experience and their academic outcomes, while they’re in school. It also has enormous impacts on post school outcomes, and that includes both likelihood of enrolling in higher education, employment, and living in their desired location in the community. The self-determined learning model of instruction is one of the few areas that has been promoted as an evidence-based practice for supporting self-determination, and we’ve seen these huge impacts on outcomes especially with students with intellectual disability.

I would say the two areas that I would strongly encourage clinicians to have in mind as they think about how this process goes from engagement to assessment to intervention and support would be 1) strengths-based approach and 2) an inclusive approach. I think we’re seeing that shift happen more across education; we see it in psychology with the emergence of positive psychology. I think coming from that place and seeing disability as something that’s a natural part of the human experience is an approach that will have an enormous impact on what this child’s life looks like in terms of the support they receive. The opportunities that they have to live the life of their choosing is going to look different at different ages, so I think that strengths based and inclusive approach has to adapt with the child’s development. While we don’t include self-determination as part of diagnostic testing, it is a wonderful consideration because of that strong correlation we’ve seen between self-determination and outcomes across someone’s quality of life.

Snyder: Right, how do we empower folks to show self-determination? Pete, any last thoughts?

Gladstone: I would say to remind everyone that we’re all susceptible to socialization and we’ve all been socialized to believe that every person with intellectual disability has a profound intellectual disability. We think that they can’t do anything right, and so I would encourage folks to continually challenge themselves and their clients to aim higher because the higher expectations that we have for clients that we have with IDD, the more likely they are to reach them. If we have low expectations that’s where they’re going to settle at. So have a growth mindset: it will break their stereotypes and surprise the people that you are working with.

References

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Appendix: Lived Experiences

Finding community is a significant part of the lived experience for us all; it connects us, helps us, and shapes our experiences, especially when we find common experiences. Verdonschot et al. (2009) relate social domain theory to how people with intellectual disabilities connect to domestic life, interpersonal life, major life activities, and community, civic and social life and found that people with IDD who live in community settings versus institutional settings engage more in social domains. However, in research we find a limitation in the inclusion of people living with IDD in general social settings. Understanding this, we can explore the ways that people living with IDD continue to fight for inclusion in our general community—as our society continues to recognize the value of inclusion to reduce social exclusivity and shifting the narrative for those living with disabilities in education (Moriña et al., 2020; Naraian (2019) Sauer & Lalvani (2017). We do see that education does take the lead with inclusion for those with disabilities; however, we do understand that community and social life activities are valuable to the human experience. Kampert & Goreczny (2002) defined the desire of those who live with intellectual disabilities to have a variety of community inclusion, based on the voices gathered in IM4Q program, which uses a 98-question interview to assess quality of life experiences for those living with intellectual disabilities. We know that people living with IDD experience this world beyond their medical condition, as we have examples of lived experiences that can support and guide our ability to better support the needs of people who do have voice despite adversities our society can place to people living with IDD. We see that people with IDD can develop their own narrative and have voice beyond the expectations of medical providers, as seen by the lives of Roland Johnson, Lia Lee, and several others now leading the charge in lived experience in social media.

Lost in a Desert World: An autobiography (Johnson & Williams, 1994)

Roland Johnson, born in Philadelphia, PA in 1945, is well-known for the changes to “deinstitutionalize” the lives of those who live with disabilities, specifically those living with neuroatypical conditions. When entering school, Roland received notes from teachers concerned with his academic performance and was identified by the family physician with mental retardation (what we now call intellectual disability). Roland grew up in the 1950’s, before legislation like the Developmental Disabilities Assistance and Bill of Rights of 1984 and the Americans with Disabilities Act of 1990, were created to protect people living with disabilities and provide equitable rights to those living with all disabilities. Johnson was removed from his family home in South Philadelphia and placed at Pennhurst State School and Hospital, a residential facility in suburban Philadelphia, created to house and educated people living with mental and physical disabilities. Roland’s account of his abuse and the abuse of others in the facility, along with his opportunity to fight to live outside of this facility in boarding homes, to his work to promote community living for those living with intellectual disabilities, as a political activist. Johnson’s own lived experiences and self-determination lead to several invitations as a public speaker, numerous awards for social activism for those living with disabilities, and leading the charge to change how people living with intellectual disabilities (even his platform helped society use this term, instead of mental retardation). This account of his life shows that people living with intellectual disabilities can have a voice; aptly the social ice organization Johnson was affiliated within Philadelphia is called “Speaking for Ourselves”. This story shows that people living with intellectual disabilities can live independently with supports, have meaningful work experiences (Johnson worked as a janitor, when he first left Pennhurst), have a sexual identity and desires, and participate in society as any of us are able to despite our challenges.

The Spirit Catches You and You Fall Down (Fadiman, 1997; Fadiman 2012)

Although not an auto-ethnographic account, The Spirit Catches You and You Fall Down provides an excellent account of the challenges faced by families of individuals with low incidence disabilities and co-occurring intellectual abilities. Journalist, Anne Fadiman accounts the life of Lia Lee and her Laotian family- of Hmong decent, forced from their home in Thailand to the U.S. during the Vietnam War. Upon arrival, Lia is diagnosed in her early life with epilepsy, and one of her seizures leads her to have an intellectual disability. Faidman chronicles the many obstacles that are created by significant cultural difference between Hmong and American culture and how the use of cultural awareness with quality of life care for a person living with an intellectual disability does not fit into the definitions of Western traditions and the lived experiences of the Hmong people, who do not even identify epilepsy or intellectual disability as disease in their culture, are able to support and give care using their own traditions in accordance to their belief system. This biographical account of the care for a person with an intellectual disability shows the value of social supports, especially in domestic life, as Lia’s family are her sole providers and most of her abilities are set to the domestic domain of socialization. Lia values her family, as the story accounts, and this support is integral in her continued defiance of medical odds and becomes a significant factor with her living beyond the expectations of her medical providers.

Studies that speak about the limitations of social skills development, like deBildt et al., (2005) and Djordjevica et al., (2020) often miss the value of social media in the realm of socialization. As we continue to see the influence of social media and birth of micro-celebrity (Marwich and Boyd, 2010; Page, 2012; Khamis et al., 2017), having representation from those living with intellectual disabilities is an important step to an inclusive society. As we see in a World Today News (2021) article about five influencers in social media living with disabilities, each use social media platforms like Instagram, TikTok and YouTube, along with their own personal blogs and vlogs, to give representation to people with intellectual disabilities and their families, access to social domains that historically lack representation of people with disabilities, like fashion and beauty. Their lived experiences can help those who give services to those with intellectual disabilities as lens to understand that an intellectual disability cannot limit a person’s ability to participate in society.

Popular Social Media accounts of individuals with IDD:

• SuperChloe

• Tank Schottle (Special Olympics Athlete)

• Madeline Stuart (Model with DS)

• Patrifashion (Fashion influencer with DS)

• Marian Avila (Model with DS)

• Zack Gottsagen (Actor with DS)

• Working with an intellectual disability (2019)

• We Have Choices (2018)

Understanding more young people living with intellectual disabilities are engaging in social media platforms Borgstrom et al. (2019) pointed out, that young people living with intellectual disabilities can use social media to connect with others and develop their identity, however, they are as vulnerable to the negative aspects of social media, such as communication barriers, cyberbullying, sexual exploitation, safety, and security risk. To address communication barriers, Martins et al. (2021) suggested a solution to make the experience of social media for those living with intellectual disabilities an easier platform.