Module 10: Lesson 3

In our last lesson, we learned about different models of disability. In this lesson, we are going to look at intellectual and developmental disabilities (IDD).

The term IDD is used to refer to a variety of biological conditions that affect a person?s development.

Some examples of IDDs include:

  • Cerebral palsy
  • Autism
  • Fragile X syndrome
  • Down syndrome
  • Intellectual Disability

A person with IDD can come from any racial, ethnic, educational or socioeconomic backgrounds.  The impairments they experience may be physical, cognitive or both. These impairments emerge before the age of 18 ? though they may be diagnosed later.

Approximately, 1 in 3 people with an IDD will also have a diagnosis of a mental health disorder. This is likely related to factors such as: 

  • Poverty and Unemployment
  • Low levels of Social Support
  • Co-occurring physical conditions (e.g. epilepsy)
  • Heightened Family Stress
  • Increased likelihood of experiencing trauma and abuse
  • Decreased opportunities to learn adaptive skills

A complete overview of all of the various conditions that fall into the category of IDD goes beyond the scope of this course, however, we will briefly look at two of the most common conditions ? autism and intellectual disability.

Intellectual Disability

An intellectual disability is diagnosed if somebody experiences significant problems with regard to intellectual functioning and adaptive behaviour before the age of 18. In the UK, an intellectual disability is often called a learning disability.

When we talk about problems with ?intellectual functioning?, we are referring to problems with learning, reasoning and problem solving.  During diagnosis, this is often measured using an IQ test where scores of up to 75 can be taken as evidence of limitations with intellectual functioning.

When we talk about problems with ?adaptive behaviour?, we are talking about more conceptual, social and practical skills. Conceptual skills include skills related to language, money or time. Social skills can relate to things like understanding relationships, self-esteem or obeying social rules or laws. Practical skills can include things like hygiene skills, vocational skills and travel skills. If should be noted that these skills deficits often co-exist with strengths and that many people with intellectual disabilities are able in other respects or talented.

An intellectual disability may be categorised as mild, moderate, severe or profound. It can sometimes be difficult to diagnose a mild intellectual disability as the person might be quite sociable and capable in many circumstances, but may require support with other matters such as managing finances.  People with severe or profound intellectual disabilities may be easier to recognise as they may require support to communicate their basic needs and wants and complete everyday tasks related to self-care and hygiene.

This history people with intellectual disabilities is complicated. During the 18th century, historical records indicate people with intellectual disabilities were expected to live within their communities. While they were often treated differently, they lived in families, often worked and were supported by largely protective community networks.

During the 19th century, attitudes towards people with intellectual disabilities changed. As their non-disabled peers started to gain more rights, people with intellectual disabilities were often denied an education or expected to live in asylums or other residential institutions.

Today, in many jurisdictions legislation and policy encourages community living and full participation within education and the workplace. However, communities often struggle to support people with intellectual disabilities. Housing, education, medical and care services that are supposed to meet the needs of people with intellectual disabilities often struggle to do so.

Autism

Autism is viewed as a spectrum disorder. It is a lifelong developmental disability which affects how people communicate, experience and interact with the world. Like people with intellectual disability, autistic people have always been a part of humanity and prior to the 19th century were part of everyday life in many communities.

Diagnosis of autism is based on the presence of challenges related to social communication and restricted repetitive behaviors.

Common characteristics of autism include:

  • Difficulties with verbal and non-verbal communication
  • Difficulties with social relationships
  • Difficulties with changes in routines
  • Sensory Impairments
  • Highly repetitive behaviors
  • Low levels of imaginary play during childhood
     

Autistic people can have abilities ranging from significant cognitive and language impairments to above-average cognitive and language abilities. However, regardless of these differences, the core characteristics and challenges associated with ASD will have an impact on the development of critical social communication skills.

Other conditions frequently overlap with autism. These can include:

  • Medical Problems (e.g. Epilepsy, gastrointestinal issues and sleep disorders)
  • Mental Health Conditions (obsessive-compulsive disorder or depression)
  • Genetic Conditions (e.g. Tuberous sclerosis complex)
  • Other IDDs (e.g. Fragile X, Intellectual Disability)

Doctors often divide autism into three separate levels based on functioning.

Level 1 means that somebody requires support. A person who receives a Level 1 diagnosis is often able to communicate using full sentences, but may experience difficulties with social aspects of communication.? They find it difficult to understand ?tone, body language or social cues. As a result, they are sometimes perceived as rude or awkward by neurotypical peers making it difficult to form friendships or relationships. In addition, they may have trouble with planning and organisation in a way that impacts independence.

Level 2 means that somebody requires substantial support. This level is associated with more obvious issues with communication and socialisation than those seen at level 1.? People at this level often communicate using relatively simple sentences and may struggle to understand instructions. Organisation and planning are also difficult and a person with Level 2 autism may become very upset when transitioning between different activities.

Level 3 means that somebody requires very substantial support. Those in this category may have very limited communication abilities and initiate infrequently. They may also engage in highly repetitive behaviors. Those diagnosed as being in this category will tend to experience the difficulties associated with levels 1 and 2 but to a more extreme degree.

Life outcomes for autistic people vary significantly. This can be greatly impacted by the level of autism, the presence of other conditions and the way in which services and society treat them.  It is estimated that 22% of autistic adults work in full time employment and 75% live with their parents (as opposed to 16% of adults with disabilities more generally). Estimates also indicate that 70-80% of autistic people will experience a mental health problem at some point in their lives.


Summary

Intellectual and Developmental disabilities are diagnosed when somebody experiences challenges. These challenges arise from the interaction of biological and social factors. These interactions also mean that people with intellectual and developmental disabilities are often vulnerable. However it is important to remember that people are not defined by their impairments or the challenges they face. People have IDD have more abilities than disabilities. When working with people with IDDs, remember that your role is to work with the person and not with their diagnostic label.

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