Saturday, March 11, 2017

March is Developmental Disabilities Month

Contributing Author: Alice Krueger

March is Developmental Disabilities Awareness Month. Here are some answers to common questions about Developmental Disabilities.

What are Developmental Disabilities?

The term “Developmental Disabilities” is a generic grouping that includes a range of chronic conditions detected before adulthood and which persist throughout life. These conditions cause a variety of cognitive and/or physical symptoms. They limit three or more of the following major life activities:
  • understanding and using language
  • self-care
  • self-direction
  • learning
  • movement
  • economic self-sufficiency
  • capacity for independent living
Such impairments often mean the individual with a Developmental Disability will need some level of sustained support or assistance.

Are Developmental Disabilities the same as Intellectual Disabilities?

Intellectual Disabilities are the most common type of Developmental Disability. Individuals with Intellectual Disabilities have an IQ below 70. They have difficulty with independent living and socialization because they have poor intellectual functioning and limited adaptive behavior. Intellectual functioning includes learning, solving problems and reasoning. Adaptive behavior includes everyday practical life and social skills.

What problems do persons with Intellectual Disabilities face?

Persons with Intellectual Disabilities have trouble learning, processing and remembering new information. This leads to academic difficulties. They have trouble with abstract thought and planning, and function better at the concrete directed level. They also have problems with social interactions; they have difficulty making friends, communicating, and making sound interpersonal judgments. Many have trouble with practical functions, affecting self-care or employment.

Intellectual Disabilities may be mild, moderate or severe, depending on the impact on the person’s daily life. A person with a mild level of Intellectual Disability may be able to learn to read at an elementary level, and may be able to function in social settings. About 85% of persons with Intellectual Disabilities have a mild level of impact.

What are some other types of Developmental Disabilities?

Cerebral palsy impacts a person’s muscular control, affecting movement, balance and posture. It is the most common motor disability identified in children. Cerebral palsy is not an Intellectual Disability.

Individuals with Down syndrome are born with an extra copy of the 21st chromosome in the nuclei of their cells. They have a range of limitations that may be physical or cognitive, and may cause from mild to severe impact on independent living.

Fragile X syndrome is a rare genetic condition usually found in males. It is thought to be a cause of autistic-like behaviors, ADD and other forms of Intellectual Disabilities. Physically, individuals with Fragile X syndrome are distinguished by long faces, prominent foreheads and large ears.

Fetal alcohol spectrum disorders (FASD) are caused by the mother drinking alcohol during pregnancy. In addition to significant learning and behavior problems, persons with FASD have characteristic facial features and low height or weight for their age.

Persons with autism spectrum disorder (ASD) may have significant communication, behavior and social difficulties; their cognitive abilities may range from severely disabled to gifted. Some people with autism spectrum disorder need support in all aspects of their daily lives; others do not.

Spina bifida is a birth defect that occurs when the spinal column fails to develop normally during pregnancy. The impact of spina bifida depends on both the position of the defect and its severity.

What are IDDs?

IDD is the abbreviation of “Intellectual and Developmental Disabilities.” Since many Developmental Disabilities involve multiple body parts and intellectual functioning, the use of the combined term IDD can be appropriate.

However it is important to note that definitions of what constitutes an IDD vary anong different service providers and authorizing legislation.

How common are Developmental Disabilities?

The prevalence of Developmental Disabilities worldwide is unknown. The National Association of Councils of Developmental Disabilities estimates that over five million people have Developmental Disabilities in the US.

The United Nations Development Program estimates that the incidence of Intellectual Disabilities worldwide is between 1-3%. They also indicate that Intellectual Disability is more common in persons living in low-income countries.

What causes Developmental Disabilities?

The different types of Developmental Disabilities have distinct causes, all related to disruptions of normal brain development. For some forms, for example Fragile X Syndrome and Down Syndrome, the cause is known to be genetic. With Fetal Alcohol Spectrum Disorder, the problem occurred during pregnancy. For other types, such as cerebral palsy, the brain damage occurred near or during birth.

Other causes of Developmental Disabilities are diseases of the pregnant mother (such as infection with Zika virus), exposure of the pregnant mother to environmental toxins (such as PCBs), early childhood illness or injury (including abuse), and poverty and cultural deprivation.

In many cases, the cause of a Developmental Disability is unknown. This is true for two-thirds of children with Intellectual Disabilities.

How are Developmental Disabilities diagnosed?

Some Developmental Disabilities can be diagnosed in utero or by physical examination at birth. The existence of a Developmental Disability in other children is suspected when childhood developmental stages, such as sitting up, walking and talking, are missed. This is followed by physical examinations and genetic tests seeking causes for the developmental delays.

What are dual diagnoses?

Many individuals with a Developmental Disability also have other physical and/or mental health issues. Due to these associated health issues, life expectancy for a person with a Developmental Disability is generally about 20 years below the national average.

People with communication difficulties might have problems explaining their health needs. Some persons with Intellectual Disabilities may need assistance recognizing the need for and obtaining health care. This can result in obesity, poor dental health, and impaired vision or hearing. Similarly, mental health issues are more common in people with Developmental Disabilities than in the general population, and are more difficult to treat.

Some specific developmental conditions result in physical health issues; for example, persons with Down syndrome often have poor cardiac function. Some persons with Developmental Disabilities display challenging behaviors such as aggression, self-injury, or stereotyped behaviors that can result in additional diagnoses.

Where can I find out more about Developmental Disabilities?

A display on Virtual Ability’s Healthinfo Island in Second Life provides additional detailed information about Developmental Disabilities. You can visit the display here:

Many support organizations exist at national and local levels. Consult the ones closest to you. Here are a few links to national organizations that may prove helpful:

American Association on Intellectual and Developmental Disabilities:
The ARC:
Easter Seals:
Goodwill Industries:
National Association of Councils on Developmental Disabilities:
National Center on Birth Defects and Developmental Disabilities:
National Association for the Dually Diagnosed:
University Centers for Excellence in Developmental Disabilities:

Contact a Family:
Together Trust:
Clear Helper (list of organizations in England):

Inclusion Australia:
Australia Federation of SPELD Associations:
Australian Advisory Board on Autism Spectrum Disorders:

Canadian Association for Community Living:

Special Olympics:

Image Credits:
Boy with Down Syndrome: Boy with Down Syndrom, Wikimedia Commons
Healthinfo Island Display: iSkye Silverweb

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