End of Year Project

Abstract

Despite parents of kids with Autism’s primary role in managing their child’s needs, parents often have difficulties in navigating service systems, finding relevant information about their child’s diagnosis on the Spectrum, and accessing proper health care and community resources. This can lead to higher levels of stress and an emotional toll on the parents. Caregivers and parents have a multitude of information and resources that it can be overwhelming to determine which sites are credible and which ones are not effective. The literary review I am conducting is a preliminary search for a bigger project the lab will be conducting in the future. The information I find will be used to create a crisis ready parallel pathway to accessing services in instances where in person services are not an option due to COVID-19, expense, or location. This pathway will make it easier for Parents of kids with Autism to access credible resources that can be relevant to them. We would be building an alternative platform that could be used at a lower cost than the traditional interventions.

Objectives

• Learn the types of resources parents use when they have a child with Autism

• See if the resources change throughout their child’s lifespan and find out if they search for more support after diagnosis.

• Learn the functions of support of social supports, social media, and formal supports

• Satisfaction and effectiveness of support used

• Learn if research shows telehealth as a lower cost, effective means of intervention

• Learn what can be improved in telehealth that is better in person

• Have knowledge to build an effective crisis ready parallel pathway to accessing services

Background

Autism spectrum disorder (ASD) is a neurodevelopmental condition characterized by pervasive social communication deficits and restricted, repetitive, and inflexible patterns of behavior, interests, and activities.¹ Intensity of presentation, verbal and cognitive abilities, and adaptive functioning vary significantly across individuals with ASD and even within an individual over time. Persons with ASD are highly likely to experience co-occurring physical and mental health conditions (e.g., gastrointestinal and sleep problems, ADHD, anxiety, depression, severe behavior problems) across the lifespan.^2,3 All those affected with ASD and their families require some forms of support and have care needs.⁴ Therefore, being able to access services and resources considered best practice for those with ASD broadly and on an individualized or family-based level is of absolute importance to improve quality of life.

The coronavirus disease (COVID-19) pandemic has changed how our local community and global society run, affecting persons with ASD and their families.^5,6 An early analysis of globally-federated electronic medical record data indicates that individuals with intellectual and developmental disabilities (IDD, including ASD) have a higher prevalence of physical and medical comorbidities associated with poorer COVID-19 outcomes, and younger persons with IDD (≤ 17 years old) have a higher infection risk and a higher fatality rate than non-IDD peers.⁷ There have been policies rapidly enacted to protect the physical health of persons with ASD and other vulnerable populations. However, such societal mitigation strategies have inadvertently affected the mental health and well-being of those with ASD and their families, resulting in high stress, increased mental health challenges, and disrupted services and supports.⁸

Since the start of the pandemic, use of video-based telehealth medical and mental health services have rapidly increased. While ideal when in-person visits are a safety risk, virtual service provision is not always amenable to those with ASD and their families. Individuals with ASD who are minimally verbal, have co-occurring IDD, have difficulties adapting to virtual platforms, or have behavioral problems are less likely to be successful during virtual visits.⁶ Further, families where English is not the primary household language; parents who are elderly or less educated, of lower socioeconomic status, have inflexible work hours, or belong to other disadvantaged groups are disproportionally less likely to initiate and continue to access services provided in virtual formats. Thus, finding alternative methods to video-based telehealth services during times where social distancing is critical to one’s health is of immediate necessity for those with ASD and their families. Long-term benefits of a tailored, responsive service choice addresses health and digital disparities for those with ASD and their families via developing a crisis ready, and adaptable service model for future use.

Caring for a child with Autism can increase levels of stress on the parents which can affect their mental health which can negatively impact the quality of care a child receives which can lead to further stress on the parent creating a cycle of increasingly harmful parent-child and parent-parent relationships. Parents of lower socioeconomic status and education have higher parenting stress, but coping resources and social support can act as a buffer to protect against stress. Parents of a child with ASD utilize different types of support to serve different types of needs. Functions are categorized as emotional, tangible, or informational support.⁹

Materials and Methods

Results

Based on the articles that are delivering telehealth programs parents felt it should be made available to families right at the time of an ASD diagnosis or even earlier such as when “red flags” are raised for a child to empower them and provide them with direction during this difficult time.¹⁰ Telehealth interventions are deemed successful as a source of motivation, a reminder for them to take action, and as a source of social support.¹¹ Parents indicated that a hybrid delivery model (i.e. self-directed internet-based instruction with remote coaching) was acceptable, useable, and effective. Video-based instructional components were rated most favorably.¹² Barriers to telehealth include lack of internet access, poor internet skills, preference towards face to-face interaction, the fear of not being able to communicate effectively with the clinician, and the expectation that distance interaction would be lacking in warmth.¹³

Besides telehealth interventions, Parents of a child with ASD may utilize different types of support, and the subtypes found within both informal and formal social supports likely serve different needs.¹² Emotional, Tangible, and Informational support were identified as types of support parents of children with Autism utilize. Emotional support boosts may serve to boost self-esteem and feelings of belonging through the presence of encouragement, comfort, interest, and concern such as ASD Facebook groups. Tangible support or “‘instrumental support” refers to assistance in managing barriers or challenges and is usually focused on provision of financial or transport assistance. Informational support helps with coping with stress or solving issues through information provided on resources or coping strategies.¹⁶

Websites play a central role for coping, social support, and education. The Internet can forge virtual support groups that enable parents to extricate themselves from their isolation and become instrumental in combating feelings of futility that isolation can bring.¹⁵ Parents indicated that informal social supports (i.e. physical and emotional assistance provided by non-professionals) and social media were perceived as more helpful than formal supports (i.e. professional services offered by organizations or agencies), which were typically perceived in a neutral manner by parents.¹⁶ Survey data showed that parent selection of information sources followed similar patterns over the range of child ages, with an overall reduction in total information source selection as children aged into adulthood. Therapists, and other parents of individuals with ASD were the most popular local sources of information, followed by local organizations and doctors.

Overall, parents were ambivalent about the internet, and wavered among appreciation, distrust, and overload when describing information seeking on the web. For parents of individuals with ASD and other disabilities, the information landscape is particularly complex, and parents who seek and manage information on behalf of their children sometimes face webs of disconnected, difficult to access information. For these parents, lack of access to quality information has meant reduced well-being and quality of life for their children, themselves, and their families.¹⁷ The main themes that emerged in the parents’ responses about the positive aspects of using the internet for support included receiving access to information and services, connecting with others, and increasing advocacy. At the same time, the disadvantages of accessing support through the internet were that it provided inaccurate, confusing, or overly negative information. Many parents reported that the most useful aspect of the group was the opportunity to connect with other parents and to gain information about resources. ¹⁸

Conclusion

Telehealth is becoming more prevalent now more than ever due to the COVID-19 pandemic. Telehealth and parent training can provide timely and competent support to parents of children with Autism. Parents feel telehealth programs should be available to families at diagnosis or when seeing red flags that may point to ASD. This is due to parents feeling overwhelmed, anxious, and isolated after hearing their child’s diagnosis. Telehealth, parent training, and online support can be the keys to raising a happy, healthy child, and maintaining family well-being and emotional resilience.

What's Next

Dr. Fodstad and the rest of the research team will review my findings and possibly expand the search if we feel we need more information. The findings from this literary review will be used as a basis to build an effective and lower cost alternative platform to access services.

Works Cited/References

1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: Author.

2. Lai, M. C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., ... & Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis. The Lancet Psychiatry, 6(10), 819-829.

3. Muskens, J. B., Velders, F. P., & Staal, W. G. (2017). Medical comorbidities in children and adolescents with autism spectrum disorders and attention deficit hyperactivity disorders: A systematic review. European Child & Adolescent Psychiatry, 26(9), 1093-1103.

4. Lai, M. C., Anagnostou, E., Wiznitzer, M., Allison, C., & Baron-Cohen, S. (2020). Evidence-based support for autistic people across the lifespan: Maximising potential, minimising barriers, and optimising the person–environment fit. The Lancet Neurology.

5. Amaral, D. G., & de Vries, P. J. (2020). COVID‐19 and Autism Research: Perspectives from Around the Globe. Autism Research, 13(6), 844.

6. Ameis, S. H., Lai, M. C., Mulsant, B. H., & Szatmari, P. (2020). Coping, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond. Molecular Autism, 11(1), 1-9.

7. Turk, M. A., Landes, S. D., Formica, M. K., & Goss, K. D. (2020). Intellectual and developmental disability and COVID-19 case-fatality trends: TriNetX analysis. Disability and Health Journal, 100942.

8. Colizzi, M., Sironi, E., Antonini, F., Ciceri, M. L., Bovo, C., & Zoccante, L. (2020). Psychosocial and behavioral Impact of COVID-19 in Autism Spectrum Disorder: An online parent survey. Brain Sciences, 10(6), 341.

9. Shepherd, D., Goedeke, S., Landon, J. et al. The Types and Functions of Social Supports Used by Parents Caring for a Child With Autism Spectrum Disorder. J Autism Dev Disord 50, 1337–1352 (2020). https://doi.org/10.1007/s10803-019-04359-5

10. Pickard KE, Wainer AL, Bailey KM, Ingersoll BR. A mixed-method evaluation of the feasibility and acceptability of a telehealth-based parent-mediated intervention for children with autism spectrum disorder. Autism. 2016 Oct;20(7):845-55. doi: 10.1177/1362361315614496. Epub 2016 Feb 9. PMID: 26862084.

11. Healy S, Marchand G, Williams E. "I'm not in this alone" the perspective of parents mediating a physical activity intervention for their children with autism spectrum disorder. Res Dev Disabil. 2018 Dec;83:160-167. doi: 10.1016/j.ridd.2018.08.014. Epub 2018 Sep 13. PMID: 30218986.

12. Wainer AL, Ingersoll BR. Increasing Access to an ASD Imitation Intervention Via a Telehealth Parent Training Program. J Autism Dev Disord. 2015 Dec;45(12):3877-90. doi: 10.1007/s10803-014-2186-7. PMID: 25035089.

13. Salomone E, Maurizio Arduino G. Parental attitudes to a telehealth parent coaching intervention for autism spectrum disorder. J Telemed Telecare. 2017 Apr;23(3):416-420. doi: 10.1177/1357633X16642067. Epub 2016 Apr 6. PMID: 27056906.

14. Ingersoll B, Shannon K, Berger N, Pickard K, Holtz B. Self-Directed Telehealth Parent-Mediated Intervention for Children With Autism Spectrum Disorder: Examination of the Potential Reach and Utilization in Community Settings. J Med Internet Res. 2017 Jul 12;19(7):e248. doi: 10.2196/jmir.7484. PMID: 28701294; PMCID: PMC5529736.

15. Fleischmann A. The hero’s story and autism: Grounded theory study of websites for parents of children with autism. Autism. 2005;9(3):299-316. doi:10.1177/1362361305054410

16. Shepherd D, Goedeke S, Landon J, Meads J. The Types and Functions of Social Supports Used by Parents Caring for a Child With Autism Spectrum Disorder. J Autism Dev Disord. 2020 Apr;50(4):1337-1352. doi: 10.1007/s10803-019-04359-5. PMID: 31919701.

17. Gibson AN, Kaplan S, Vardell E. A Survey of Information Source Preferences of Parents of Individuals with Autism Spectrum Disorder. J Autism Dev Disord. 2017 Jul;47(7):2189-2204. doi: 10.1007/s10803-017-3127-z. PMID: 28451948.

18. Clifford T, Minnes P. Logging on: evaluating an online support group for parents of children with autism spectrum disorders. J Autism Dev Disord. 2013 Jul;43(7):1662-75. doi: 10.1007/s10803-012-1714-6. PMID: 23143075.

Acknowledgements

I'd like to give a heartfelt thank you to Dr. Fodstad, Justin Carpenter, and Jadon Mehringer. It has been a pleasure to work with you this year and I look forward to continue working with you all in the summer!

IUSM Department of Psychiatry Jay W. Hammer MD and Jean K. Hammer Research Fund for the Study and Treatment of Autism (PI: Fodstad)

Organization for Autism Research Applied Research Award (PI: Fodstad)

1R61AG066543-01; Sub-award 125534953 Raffi (PI); Apostolova (Site Sub-I) Alzheimer’s Clinical Trial Consortium for Down Syndrome (TRC-DS)