About intellectual disabilities, autism, and dual diagnosis
For those looking to better understand the people who benefit from LiveWorkPlay support in a more technical sense, the information below is an attempt to offer such a description. Please note that although many of the people we support have common needs, each person is unique, and individualized plans (and thinking) are a critical aspect of the LiveWorkPlay approach. You can view our Just Enough Support video series to learn more about our person-centred approach.
Diagnostic definitions of disability are by their nature focused on deficits and “what is wrong” with the individual. While diagnostic criteria are unavoidably used for managing access to government-funded programs and services, and can be useful as part of a much deeper processing for getting to know an individual and supporting them in their life pursuits, the definitions below are generally not relevant to how LiveWorkPlay speaks to people with disabilities, their family, and friends. For internal discussions as well as public communications, are language is typically focused on assets – their capabilities – not what they cannot do (or have been told they cannot do).
An intellectual disability (also known as a developmental disability or intellectual developmental disorder, and formerly known as mental retardation) is a life-long condition, usually present at birth or originating in the early years of childhood, which interferes with one’s ability to learn at the same pace or to the same extent as others.
Having an intellectual disability does not mean that a person cannot lead a life that would be familiar to most other citizens (apartment, job, friends, spouse, etc). Exclusion from community life is frequently experienced by people with intellectual disabilities as a result of any or all of stigma, bias, ignorance, and discrimination. These barriers may be systemic or attitudinal, and most often, support is required to address them (exclusion is not the fault of the individual with a disability).
An excluded group can only become included when other citizens (and the environments where they gather) change their thinking and practices. This is true even when the exclusion is not “deliberate” – when we are not intentionally including, we are likely unintentionally excluding.
The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) defines intellectual disabilities as neurodevelopmental disorders that begin in childhood and are characterized by intellectual difficulties as well as difficulties in conceptual, social, and practical areas of living. The DSM-5 diagnosis of ID requires the satisfaction of three criteria:
- Deficits in intellectual functioning—“reasoning, problem solving, planning, abstract thinking, judgment, academic learning, and learning from experience”—confirmed by clinical evaluation and individualized standard IQ testing (APA, 2013, p. 33);
- Deficits in adaptive functioning that significantly hamper conforming to developmental and sociocultural standards for the individual’s independence and ability to meet their social responsibility; and
- The onset of these deficits during childhood.
Although the general public tends to be familiar with a small number of diagnoses related to intellectual disabilities (such as Down syndrome) there are more than 200 known causes of intellectual disability. The nature and extent vary greatly between individuals, and may or may not be accompanied by physical disabilities and/or autism (see below) and/or mental health issues (see below, dual diagnosis).
What about autism?
The DSM-5 defines Autism Spectrum Disorders (ASD) as follows:
Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history :
- Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
- Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
- Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
Note: not all persons with an ASD diagnosis meet the criteria for an intellectual disability. That is why the LiveWorkPlay mission statement (updated 2019) includes both terms (people with intellectual disabilities and autistic persons).
What about dual diagnosis?
Dual diagnosis refers to an individual with an intellectual disabilities and/or autism and a mental health issue. For example, a person who has Down syndrome might also have a post-traumatic stress disorder (PTSD). This is an example of a dual diagnosis. A significant percentage of individuals we support have a dual diagnosis, and this includes in some cases serious mental illnesses.
Why use the term intellectual disability?
LiveWorkPlay started using the term “intellectual disability” in 2003. This decision came out of discussions with people with intellectual disabilities supported by LiveWorkPlay who were struggling with the challenge of communicating the nature of their disability to other people, as well as decisions made by other organizations such as the Canadian Association for Community Living.
Many other terms have been commonly used to refer to intellectual disability, including cognitive impairment, developmental disability, mental challenge, mental handicap, mental retardation, and more. In the United Kingdom, the term “learning disability” typically refers to intellectual disability, but in North America, the term is used differently: as defined by the Learning Disabilities Association of Canada, learning disabilities occur only in individuals who otherwise demonstrate at least average abilities essential for thinking and/or reasoning. As such, learning disabilities (as the term is used in Canada) are totally distinct from intellectual disability.
The term developmental disability is sometimes used interchangeably with intellectual disability. The term is being replaced in most jurisdictions by intellectual disability, because the word “developmental” can lead to confusion about the nature of the disability and its lifelong effects. It may also contribute to the mistaken association of adults with intellectual disabilities as being “like children.”
What does it all mean?
All that being said, this doesn’t really tell you much about the people in the LiveWorkPlay community, what their lives are like, and what they have to offer. They are as unique as any other humans. Some can read very well. Some find reading very difficult. Some can socialize very well. Some find socializing very difficult. Some are quick with a smile and a handshake. Others are quiet around those they don’t know well. Some love to communicate in traditional ways, e.g. talking. Others have a lot to say, but need to use or prefer to use augmentative and alternative communication (such as an iPad and a text to speech application). Some might enjoy rock concerts, others might have a severe aversion to loud noises. You get the idea.
What all the members in the LiveWorkPlay community have in common is that society, in general, often does not always have time for them – whether it is being impatient because they are actually thinking or moving more slowly, or because they do not want to make the effort to accommodate and include them (even though it is often easy to do so).
This means people with intellectual disabilities and/or autism often find themselves on everyone else’s schedule, playing by everyone else’s rules, and it doesn’t work very well. Have you ever had the experience of working with someone who always wanted to go faster than you? Have you ever struggled to learn a new computer program while the person showing you how to use it was clicking buttons and typing on keys so fast that you had no idea what was happening?
That’s often what life is like – every day – for a person with an intellectual disability and/or autism. It doesn’t come as a big surprise that self-confidence and self-esteem are common problems, does it? Or that “making a decision” can provoke extreme anxiety? Why believe in yourself when what you think and feel never seems to matter?
Unless some of the people around you slow down. And listen. And give you the support you need to make your own decisions, gain confidence, and take greater control over your own life. This is a brief explanation of how challenging life with an intellectual disability and/or autism can be, and also touches on what the LiveWorkPlay mission is all about – it is not about changing the person or their disability, it is about evolving the attitudes and actions of others and the cultures of the places where they gather (workplaces, schools, community venues) needing to change so as to respect and value people with disabilities.