Description and summary of the article.

Autism is the most common disability in children, the symptoms vary in severity. Parents and families can find living with an autistic child very stressful, especially when the symptoms are severe. It's not only the symptoms themselves that create stress, but the difficulties accessing services and attending required therapies. In the past, services for children experiencing severe autism symptoms were provided within institutions, however large state-funded institutions generally no longer exist, and most services are now community-based.

Families have difficulty navigating the system because of the changing rules and eligibility criteria. Although individual therapy is most effective, many children may not be eligible or may be put onto wait lists that can span years. Other services and therapies can also be difficult to obtain with varying eligibility criteria and application requirements

These wait lists and lack of immediate support can result in families seeking acute care when they are in crisis. Families in crisis are more likely to consider sending children to institutional homes.

The Ministry of Child and Youth Services (MCYS) has the mandate to protect these children, however the system is underfunded, and it is not user friendly. The government has recognized these issues and is working towards providing families with a single point of entry into the system, this service would require collaboration between agencies. Non-traditional cross-agency collaborative approaches such as flexible work hours for parents and inclusive daycares could alleviate the burden and reduce the social isolation that many of these families with autistic children feel.

Principles of health promotion and/or community development that can help us better address the issues raised.

Two health promotion/community development principles that can help address the issue of cumulative health impacts to children with autism are applying a life course perspective and increasing the community's empowerment and agency.

A life course perspective acknowledges the importance of different life stages and the importance of potential cumulative disadvantage for those who experience disadvantages at one life stage. Childhood is an important life stage that directly influences health outcomes in adult life. Children with autism who do not receive the services they need will likely experience cumulative disadvantages as they move into adulthood.

Empowerment is also important for health promotion. The current situation includes families who feel powerless in the system. The children, siblings' parents, and health care professionals who provide services to families make up a community.

Empowerment of individuals can result in increased control and self-esteem, but a bigger impact may be found if the community as a whole could take on a broader focus to empower the health promotion of those impacted by autism. This could be accomplished through development of support groups and partnerships that may lead to social change and better outcomes for children and families.

By implementing these ideas, people with autism will not be excluded or alienated because of their condition but they will be accepted and welcomed by society for who they are and what they can become.

Health promotion barriers for addressing the issues raised

From a health promotion perspective there were several barriers facing children with autism including language, socioeconomics, rural access, and long wait times.As mentioned in the case study, language barriers are one among many. Families who are not fluent in English are likely at a disadvantage of receiving the service. Parents of children with autism face language barriers when accessing health services, communicating with their physicians, and interpreting forms (Malik-Soni et al., 2022).

Socioeconomic status is another key determinant of the services a child receives. According to the article, individuals of lower socioeconomic status face difficulty accessing services. Research has shown that socio-economic status contributes to feelings of powerlessness and disadvantage (Popay et al., 2020).

Furthermore, small rural communities are another barrier that was raised in the article. Rural communities have less access to services, due to a shortage of clinicians who have expertise in autism. Families are less likely to seek care due to the additional cost and time commitment associated with long-distance travel (Malik-Soni et al., 2022).

This leads to another barrier which is long wait times for diagnosis and treatment. Despite traveling long distances, lack of funding for services remains to be a barrier across Canada. As the article stated, residential placements for children with autism is limited, if a child was diagnosed with autism at the age of three, treatment will only be available at the age of six (Rayar et al., 2015).

Stakeholders

The stakeholders involved in the case study are the children experiencing autistic symptoms, their parents and siblings, and the health care professionals who are helping them. Bureaucrats and politicians may also be considered stakeholders who contribute to health policies, enable programs, set health targets and annual budgets.

Children are the main stakeholder, those who are experiencing symptoms and not always able to receive appropriate or timely care. These children will eventually become adolescents and adults who continue to have challenges, especially if their symptoms are not addressed at this life stage. The parents and siblings of children experiencing autisms can also be stressed. Parents bear the burden of accessing care for their children. Health care professionals, including family doctors and therapists, are involved in directing families to different services and helping them manage symptoms. The policy makers focus on practical solutions that help families and the public long term.

Health promotion/community development strategies that can be used to address the issues raised

Specific issues addressed in the case study were lack of services being provided to children with autism. If early autism is detected families are put on a waiting list for up to three years. Children make more progress the earlier they're enrolled in these programs. Unfortunately, children who are enrolled in programs may require additional help which requires them to wait long periods to receive the supplementary help. Families that can advocate for their children are served by the system much better thus putting families who are not fluent in English and a part of a lower socioeconomic status at a disadvantage.

Upon looking at all these issues there seems to be a common discrepancy in the number of services being provided and the accessibility and quality of these services. The only suitable solutions to these problems would be to increase funding from the government to create more services for children with autism, so that wait times are decreased and everyone can get the help they require promptly. New services and centers for autism will be open to anyone regardless of their socioeconomic status. If additional help is required for families that need translation or are not fluent in English, it will be provided.

By implementing these changes children will be able to get the help they need at an earlier age thus helping them make more progress. Families will have a peace of mind that their children are being taken care of and are receiving the support needed

Conclusions and lessons learned from this case study with respect to health promotion and community development

This case study showed us how difficult it can be for families to manage health conditions, when combined with other social factors such as age, language, socioeconomics, and rural populations. The key lesson is that early intervention is paramount and removal of barriers to improve access to services, including a streamlined eligibility approach, will result in a healthier population.

The focus on health promotion in children is important from a life course perspective because early intervention can lead to a healthier lifelong term. Early intervention is required on the part of society and the government in terms of helping people with autism.

MCYS stated their goal to provide a one window approach to streamline services and therapies for children with autism. The federal government also needs to provide more funding to the provincial health ministry to reduce wait lists for young children, which will result in a healthier population in the future.

Stigma is an important consideration since social acceptance will encourage people to seek treatment. Schools and universities should teach people about neurodiversity such as autism, so people are not only more aware of these diseases, but are also more sympathetic, and compassionate towards individuals that may need more help than others.

References

Malik-Soni, N., Shaker, A., Luck, H., Mullin, A. E., Wiley, R. E., Lewis, M., Fuentes, J., & Frazier, T. W. (2022). Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatric research, 91(5), 1028-1035. https://doi.org/10.1038/s41390-021-01465-y

Popay, J., Whitehead, M., Ponsford, R., Egan, M., & Mead, R. (2020). Power, control, communities and health inequalities I: Theories, concepts and analytical frameworks. Health promotion international.

Rayar, M., Doig, C., & Petch, J. (2015). Ontario families struggle to find services for children with autism. Retrieved from https://healthydebate.ca/2015/04/topic/community-long-term-care/autism-services/

Discussion Questions

1. What steps would you take to improve empowerment among families in the health care system?
2. Do you have an example of when you felt empowered in health care? Have you ever felt disempowered?
3. What other examples of cumulative health disadvantages have you learned about or experienced?