According to the CDC, recent estimates in the United States show that about one in six, or about 17% of children aged 3 through 17 years old have one or more developmental disabilities. This vulnerable community also experiences mental health conditions on a disproportionate scale compared to the general population – in fact, it is estimated that around 30% of all individuals with an IDD will experience a mental health condition at some point in their lifetime.
As of 2016, 7.37 million people in the United States had intellectual or developmental disabilities. Disability impacts all of us – indeed, many of us may have a loved one or friend who has an intellectual or developmental disability, but the term ‘IDD’ still remains deeply misunderstood. Many people conflate developmental and intellectual disabilities, and make the mistake of referring to individuals with developmental disabilities as (I/DD). In fact, IDD is a shorthand for intellectual/ developmental disabilities.
Intellectual and developmental disabilities refer to two disability groupings: “Developmental Disability” is a broader umbrella term, and includes (but is not limited to) “Intellectual disabilities.” Indeed, a lot of individuals have both intellectual and developmental disabilities, but they are distinct categories of diagnosis.
Typically, the acronym IDD stands for intellectual and developmental disabilities in individuals. IDDs are deficits in intellectual functioning and adaptive functioning that are usually present at birth up to the age of 18 and uniquely impact the trajectory of an individual’s physical, intellectual, or emotional development. Many of these conditions affect multiple body parts or systems.
Diagnosing an Intellectual Disability
Diagnosis of an intellectual disability is typically made through individually administered, psychometrically valid, and culturally appropriate tests of intelligence or cognition, often assessed by the range of scores on an Intelligence Quotient (IQ) test. A full-scale IQ score of around 70 to 75 indicates a significant limitation in intellectual functioning.
The following characteristics of adaptive functioning are considered:
- Conceptual – language, reading, writing, math, reasoning, knowledge, memory.
- Social – empathy, social judgment, communication skills, the ability to follow rules and the ability to make and keep friendships.
- Practical – independence in areas such as personal care, job responsibilities, managing money, recreation, and organizing school and work tasks.
Intellectual disabilities typically involve problems with general mental abilities that impact functioning in two areas:
- Intellectual functioning (such as learning, problem solving, judgment)
- Adaptive Functioning (activities of daily life such as communication and independent living)
What is the difference between an intellectual and developmental disability?
A developmental disability is a delay or impairment in cognitive ability, physical functioning, or both that begin during the developmental period (in utero until end of adolescence) and will likely last through a person’s lifetime. These delays in cognitive development can impact the ability to reason, learn, problem-solve, and other everyday social and life skills. People with developmental disabilities can experience problems with major life skills such as
- Self-help skills
- Independent living
Some developmental disabilities include: Autism, Behavior Disorders, Brain Injury, Cerebral Palsy, Down Syndrome, Fetal Alcohol Syndrome, Intellectual Disability, and Spina Bifida.
Autism Spectrum Disorder (ASD) or Autism is a “developmental disability caused by differences in the brain,” according to the CDC. People with ASD struggle with different ways of learning, moving, or paying attention. Social interaction and communication can be very challenging for individuals on the Autism spectrum.
Cerebral Palsy is a non-progressive pathologic lesion in the developing infant or child’s brain causing permanent motor and/or sensory impairment. It is the most common motor disability in childhood, and affects a person’s mobility, posture, and balance.
Down Syndrome is a condition in which a person has an extra chromosome. These chromosomes determine how a baby’s body forms and functions as it grows during pregnancy and after birth. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.
People with Down syndrome usually have an IQ (a measure of intelligence) in the mildly-to-moderately low range and are slower to speak than other children.
Fetal Alcohol Syndrome
Fetal alcohol syndrome is a condition in a child that results from alcohol exposure during the mother’s pregnancy. Alcohol in the mother’s blood passes to the baby through the umbilical cord. It causes brain damage and growth problems associated with learning disorders, poor memory, trouble with attention and processing information, and other social and behavioral issues.
An intellectual disability is a condition characterized by significant cognitive and adaptive limitations that originates before the age of 22. Intellectual functioning generally refers to skills surrounding communication, mental capacity,social capability and ability to complete self care skills.
One way to measure intellectual functioning is an IQ test. Generally, an IQ test score of around 70 or as high as 75 indicates a significant limitation in intellectual functioning. The American Association of Intellectual and Developmental Disabilities issues an intellectual disability diagnosis if an individual meets three criteria:
- IQ is below 70-75.
- There are significant limitations in two or more adaptive areas (skills that are needed to live, work, and play in the community, such as communication or self-care).
- The condition manifests itself before the age of 18.
Intellectual disability can be caused by injury, disease, or a problem in the brain. For many children, the cause of their intellectual disability is unknown.
Some causes of intellectual disability—such as Down syndrome, Fetal Alcohol Syndrome, Fragile X syndrome, birth defects, and infections—can happen before birth. Some happen while a baby is being born or soon after birth.
Other causes of intellectual disability do not occur until a child is older; these might include severe head injury, infections or stroke.
Spina bifida is a physical birth defect that impacts the spine and affects the development of the spinal cord and vertebrae. It is a type of neural tube defect (NTD) and can happen anywhere along the spine if the neural tube doesn’t close all the way. This defect in the development of the neural tube leads to damage to the spinal cord and nerves, and might cause physical and intellectual disabilities that range from mild to severe.
Metabolic developmental disabilities are conditions that develop because of an impediment in the way that the body’s metabolism functions, often as a result of genetic defects inherited from both parents.
Genetic metabolic diseases are congenital errors of the body’s chemistry that impact the way food is assimilated, energy is generated, and tissue growth is enabled. Some metabolic disorders can cause an intellectual disability, such as phenylketonuria, which is a deficiency of the enzyme PAH that results in high levels of phenylalanine in the blood.
Each metabolic disability looks a little different, but they’re all the result of as little as one chemical disruption that completely changes the way that the body and/or brain work. This makes developmental milestones slow to appear or interfere with normal function.
Degenerative disorders appear later in life, characterized by an initial appearance of normalcy followed by a period of decline in function or ability. Years might pass by before the degenerative disorder appears in a person’s development. Childhood disintegrative disorder (CDD), or Heller’s syndrome, is a characteristic degenerative disorder and sometimes described as a rare form of autism.
How can we better support the IDD community?
Those with intellectual or developmental disabilities require special care, attention, and support. Members of this community have also faced years of stigma in our society, a result of lack of education around the IDD population and their unique experiences.
In 2007, AAIDD officially replaced the “Mental Retardation” portion of its name to “Intellectual and Developmental Disabilities.” The term “mental retardation” has negative connotations and often results in misunderstandings about the nature of the disorder and those who have it. Experts and advocates in the field urged for a more person-centric term than the poisoned word, leading to the passage of Rosa’s Law in 2010, which removed the phrase ‘MR’ from federal health, education and labor policy and included other “person-first” linguistic shifts.
This linguistic change is a first step to inclusion and acceptance of people with intellectual disabilities in society, but much more can be done to support this marginalized community.
Emphasize Strengths, not Weaknesses.
We all must do the work necessary to redirect societal attitudes toward people with developmental disabilities. All their lives, adults with developmental disabilities have been told (both directly and indirectly) that the way they look, act, think, and exist is not ‘normal.’ This can lead to deteriorating mental health, depression, ability to participate in social activity, and other negative outcomes, just as it would with any population who was told they don’t fit into society.
Instead of focusing on weaknesses, we can focus on the strengths and positive attributes your loved one or client has, and help them discover how they can meaningfully contribute. Of course, it is impossible for one person to undo years of internalized negative stereotypes, but we can make steps to increase intentional inclusion of individuals with developmental disabilities to help us overcome institutionalized societal stigmas.
At Helpers Inc., we are committed to enriching the lives of individuals with developmental disabilities every day through meaningful inclusion and supportive programs that emphasize self-empowerment. Please visit our website to learn more about how you can enrich a life today!