Autistic people and people with Intellectual Disability share advice for improving health care and community services. This is based on a Think Tank held in November, 2023 on aging in autism and intellectual disability. Suggestions are offered for improving care to individuals, with a particular focus on those 50 years and over.
CONTENTS:
3 - Challenges In Health and Community Care For Older Adults
4a - Recommendations For Individuals
4b - Recommendations For Health Care and Community Service Providers
1 - INTRODUCTION :
An international Think Tank entitled “Advancing Care Priorities for Health and Quality of Life among Older Autistic Adults and/or Adults with Intellectual Disability” was held in November 2023 in Vancouver, BC. The Think Tank focused on aging within the Autistic and Intellectual Disability communities, with a focus on adults in mid and later years (50 years and over). The Think Tank identified strategies to improve health and community services. Panels included a series of perspectives from self advocates as well as from health care and service providers from Canada and other world regions.
Notably, voices of Autistic people and people with Intellectual Disability were an important part of the process. They discussed a range of issues and recommendations for improving health care and community services. In this brief toolkit, we present ideas offered by presenters with lived experience. To begin to think about autism and intellectual disability in the context of health care and aging, we introduce a hypothetical example:
2 - MEET GENEVIEVE*…
Genevieve is a 69 year-old Autistic woman living independently in her rented apartment. Her sister who had provided companionship and support for many years died three years ago which left Genevieve with very little company and daily support. After months of stomach pain that was not followed up on by her community physician, Genevieve was found by her landlord to be in excruciating discomfort – when he went to her apartment to collect monthly rent. Genevieve was writhing in pain, and unable to easily walk. Her landlord called an ambulance, and then stayed with her in the Emergency Department. With the support of the Emergency Department team but also at the urging of her landlord, Genevieve was referred to a specialist to determine the source of her health issues, and what follow up care would be needed. From the Emergency Department, Genevieve was referred to a specialist due to a tumor that was discovered by a scan.
Genevieve later stated how grateful she was that her landlord had stayed with her in the Emergency Department as she didn’t understand what was going on, and felt overwhelmed and frightened. Her landlord expressed concern that not enough time was taken by her key health care provider to ensure Genevieve was comfortable and to allow Genevieve to convey what she was experiencing. He felt that advocating for more help regarding her health care needs was critically important. He wondered if the absence of this support resulted in some of her health struggles being overlooked. He thought that without him validating and clarifying what Genevieve was saying, the health care provider may not have taken the time to fully understand or address the extent of Genevieve’s pain and health issues.
*PLEASE NOTE THAT THIS IS JUST ONE EXAMPLE OF MANY DIFFERENT SCENARIOS THAT PRESENT SUBSTANTIAL CHALLENGES FOR OLDER AUTISTIC ADULTS AND/OR ADULTS WITH INTELLECTUAL DISABILITY AS THEY NAVIGATE HEALTH CARE AND COMMUNITY SUPPORT SYSTEMS.
3 - CHALLENGES IN HEALTH AND COMMUNITY CARE FOR OLDER ADULTS
As one ages, more involvement with the health care system is likely. Encountering health care providers is described as highly stressful for many Autistic individuals and/or individuals with Intellectual Disability. Panelists described the following concerns:
- Autistic individuals and/or individuals with Intellectual Disability often experience physical and/or mental health issues as they age.
- Many health care providers lack knowledge about autism and/or intellectual disability, and often are unaware of the experiences and care needs of Autistic individuals and/or individuals with Intellectual Disability. This can result in unhelpful support and/or harm.
- It may be difficult for an Autistic individual and/or an individual with Intellectual Disability to convey the symptoms they are experiencing.
- Health care providers often do not understand or sufficiently accommodate diverse ways of communicating and interacting.
- Sensory sensitivities are seldom sufficiently addressed or understood in the health care setting.
- Not listening to the Autistic individual and/or individual with Intellectual Disability on their terms is not being respectful or person-centred.
- Person-centred care requires listening and respecting individual wishes regarding their health and well-being. These commitments are not always addressed as fully as they could or should be.
- When in a stressful moment such as a health care encounter, the Autistic individual and/or individual with Intellectual Disability may need time to consider the information that has been provided. Health care and community service providers must be aware that consideration of this ‘processing time’ is essential. Currently, this is often not sufficiently provided, and this longer time required may be interpreted as lack of cognition or inattention.
- Past experiences of trauma may influence physical and mental health care. It can impact how effectively the person can communicate or understand medical concerns. Individuals described the importance of being supported by caring professionals and being provided relevant follow up resources that are known to be effective in supporting Autistic people and/or people with Intellectual Disability. Unfortunately, these considerations are not commonly offered to the extent that they are needed.
4 - ADVICE IN MOVING FORWARD…
To better care for aging Autistic adults and/or individuals with Intellectual Disability, the following suggestions were shared:
4a - Recommendations for Neurodivergent Autistic Individuals and/or Individuals with Intellectual Disability
- Bring an advocate to the health care encounter. This may help you retain what is said by the health care provider. Your advocate can support you in also asking for needed information or points of clarification.
- Ask for or have an advocate ask for additional time with your health care provider to compensate for processing time, and allow for follow up questions.
- If possible, write out your questions ahead of time and bring your list to the appointment. This may help to get all your questions answered without having to remember all your questions. You could give a copy of the questions to your advocate to ask for you, if you feel unable to communicate.
- Ask if you can have access to other professionals or types of professionals who can help you understand the health information you’ve been given, and can help address your questions and concerns. Health care providers typically work on teams. There may be team members who can take more time to listen and answer questions about your health and care.
- Inquire about community supports (e.g., social worker, community nurse, etc.) to support your health, priorities and needs. If helpful, you could ask for information to be given in written form or sent to you in an email. Consider asking your advocate to list and share your additional needs (housekeeping, grounds maintenance, or self-care, for example) if you are unable to communicate them.
- Recognize that it is your right to have control over your health care. If you need support and advocacy, you can request a Patient Advocate. A Patient Advocate is a person who provides support and helps someone get what they need. This person often is available in health care facilities. If it would be challenging for you to ask for this support, you could ask your advocate to make this request on your behalf.
4b - Recommendations for Health Care and Community Service Providers
- Recognize the importance of patient-centered care and the rights of Autistic individuals and individuals with Intellectual Disability to have control over their health and community care. Health and community care providers must avoid infantilizing Autistic individuals and individuals with Intellectual Disability.
- Address all health and mental health issues being experienced by the individual, including how issues may interact and make challenges more difficult to manage.
- Assistance to Autistic individuals and individuals with Intellectual Disability may require specific supports such as:
- Tailored or individualized assistance with coordinating, scheduling, and organizing care,
- Sufficient time and information so that the individual understands the health and care information being provided (e.g., symptoms, treatments, options),
- Services with potential value to the individual identified by service navigators, and then described to the Autistic and/or Intellectually Disabled person for them to consider.
- Specific training and professional development about autism and intellectual disability are needed. Education should help health care providers understand ways in which Autistic people and people with Intellectual Disability experience their sensory environment; for instance, what it means to be a speaking person with communication struggles, what it means to be a person with higher support needs, what teaching methods may be most effective when sharing health information, and what care approaches are beneficial. With these as a foundation of understanding, training could include effective ways to share health information to ensure understanding, and strategies to correctly glean and address the individual’s wants and needs.
- Health care and service providers are advised to offer enough time with the Autistic individual and/or individual with Intellectual Disability to ensure that they understand health care information (e.g., concerns and treatments), and have their questions answered. This includes offering time for follow up conversations.Foundational education will ensure that the health care provider understands the impact of processing time, and how it creates the need for additional time.
- Invite the Autistic individual and/or individual with Intellectual Disability to bring a support person to appointments, as desired.Offering this suggestion to the person may be the first time that they realize this is possible.
- Ensure routine monitoring and screening for common health issues in mid and older age.
- Ask about and address sensory sensitivities and needs in the health care encounter and setting. ‘Asking’ by way of a checklist may be helpful even for speaking Autistic individuals or individuals with Intellectual Disability. Otherwise, the person may be unable to recount their sensory needs if they don’t understand the topic.
- Routinely ask about, and support the Autistic individual and/or individual with Intellectual Disability in achieving their priorities.This may require referral to resources such as social supports, housing and community resources.
- Let the individual know that they are welcome to “be themself”. Remind them that they do not need to “mask” their authentic ways of being.
- Improved training for health care providers both in professional education and in ongoing professional development is essential to improve support for Autistic individuals and/or individuals with Intellectual Disability. Training curriculum must reflect the most current knowledge. The Autistic and Intellectual Disability community must be an integral part of the process of curriculum development.
- Health/aging and autism and intellectual disability-based research is needed to better understand possible physical and mental health needs of Autistic adults and adults with Intellectual Disability as they age, and how individual concerns can be better supported.
5 - Concluding Reflections
Understanding and intentional effort to address the health needs of older Autistic adults and/or adults with Intellectual Disability are critical to improving their health care and well-being. If Autistic individuals and/or individuals with Intellectual Disability are heard, they likely will gain a greater understanding about their care plan. And they will likely obtain greater access to needed supports, and improved health outcomes and well-being. Quality health and community care requires consistent attention to these priorities by health care and service providers.
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