Research Summary

Information Needs of Individuals With Intellectual Disability and/or Autism and Their Family

Mubashera Kothawala | Pollara Strategic Insights
This research summary discusses a study in which individuals with autism spectrum disorder and/or intellectual disability and their families described areas in which they felt well informed and others in which they felt less informed. They identified areas in which they desired more information and how they would prefer that information to be conveyed. The internet was the most common way to gain information, although information from direct service providers was seen as more reliable.

What you need to know:

Individuals in the autism and/or intellectual disability community, including families, have a need for specialized information and support. While some individuals and families are able to navigate and access the information and support they seek, others find this challenging.

What is this research about?

The delivery of information and support should be closely aligned with, and address, the needs of Canadians who have a developmental disability such as Autism Spectrum Disorder (ASD) and/or Intellectual Disability (ID), and their families.  Autism and Intellectual Developmental Disabilities National Resource and Exchange Network (AIDE) sought to better understand the scope and nature of informational and support needs of this population.

What was done?

Over 4,000 Canadians were contacted and invited to respond to a survey. To qualify, respondents were asked whether they, or a member of their immediate family, had a diagnosis of a  developmental disability such as ASD or ID.  Only those who answered “yes, me” or “yes, someone in my immediate family” for either ASD or ID, proceeded to respond to the rest of the survey.  The final sample consisted of 742 Canadian adults (18 years or older) who either had a developmental disability or had someone in their immediate family with a developmental disability.

What was found?

Of the sample of 742, 33% had been diagnosed with a developmental disability, and 76% had an immediate family diagnosed with a developmental disability.  Eighty one percent of the respondents reported themselves or someone in their immediate family to have ASD (including Asperger’s syndrome), while 52% identified themselves or an immediate family member as having an ID. Self-advocates and family members identified as being very informed about their own or their family member’s developmental disability. Parents tended to be better informed about their child’s developmental disability (54%-56%), while those providing care for a sibling (46%) or a spouse (42%) described themselves as moderately well-informed, and those with a parent who has a disability were less informed (38%).

Respondents were asked to comment on specific information areas (i.e., social skills, communication, diagnosis, health, safety, education, mental health, family support, home living/housing and community support, behavioral supports, self-care, leisure, broader issues in society, self-direction/choice and advocacy, livelihood and employment, aging, legal/tax/finances). They were asked how informed they were about these topic areas. Overall, six to eight-in-ten reported having at least some information on all of these information areas, but only two to three-in-ten said they are very informed. Four-in-ten were very informed about social skills, communication, diagnosis and health. Respondents were least informed about legal/tax/finances, aging, and livelihood and employment.  Participants who identified as self-advocates had more information about topics that related to mental health, social skills, legal and finances, and aging, in comparison to family members.

While most of the respondents had some information about the majority of topic areas, they would like to receive more information on most of the topics. Among those, aging (19%), and legal/tax/finances (19%) were areas about which little information was viewed as available and therefore needed. However, these were among the lesser important information areas. The most prominent topics were mental health, health, social skills, self-care and behavioral supports. Family members were likely to report needing more information than were self-advocates. Respondents within the age of 40-49 years, indicated needing more information for all areas reviewed. About three-quarters of this age group reported needing more information related to livelihood and employment (78%), self-care (76%), and safety (75%).  Although respondents who had received a diagnosis in the past year were more informed, they were likely to desire more information across most topics in comparison to those who had been diagnosed more than a year ago.

To access information about ASD and ID, a majority of respondents used the internet (51%), primary healthcare providers (34%), other healthcare providers (31%), and family and friends with similar experience (29%).  Those who identified as self-advocates with ID were more likely to approach family and friends (29%-31%) for information than those with ASD (23%). Likewise, they were more likely to get information from government agencies (27% vs 22%) and support groups (26% vs 20%).

Despite the internet being the primary source of information, respondents noted that those directly involved in care were more reliable sources of information. Thirty six percent indicated that primary healthcare providers were most reliable, followed by 27% to 32% who respectively indicated caregivers and other healthcare providers. Twenty percent of the respondents said that the internet is a very reliable source. While 64% of respondents found it easy to access information related to developmental disabilities, 23% said it is very easy versus 32% who found it difficult. Though information is available, respondents indicated that it can be confusing to find information and at times, that information is irrelevant and unreliable.

Where information is readily available, 50% of respondents strongly agreed that it is available in their preferred language, and 33% felt that it is easy to understand or available in multiple languages (31%). The language in which information is accessible was reported to be important. Fifty eight percent of the respondents strongly agreed that information should be available in an easy-to-understand language, and 53% advised having information in multiple languages. The findings speak to a need for reliable and up-to-date information to be available on the internet.

Citation: Pollara Strategic Insights (2019, July). AIDE: Priority of Informational Needs. Report.

This summary was written by Mubashera Kothawala, Senior Research Manager, Pollara Strategic Insights.

Photo by Markus Winkler on Unsplash

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