Open access article: https://doi.org/10.1007/s40489-023-00420-3

Abstract

Background

Individuals with autism are more likely to suffer from various physical and mental health problems and experience disparities in effectively accessing healthcare services. This review aims to identify studies that report on the experiences of autistic children, their parents/carers, and the healthcare professionals treating them; to develop an understanding of the facilitators and barriers to healthcare access in order to inform policies and practice to improve access to healthcare for autistic children in the UK.

Methods

A total of 3069 records were screened, and 24 studies were included; six quantitative, four qualitative, and fourteen mixed-methodology studies.

Results

Professional and parental knowledge about autism, sensory issues, challenging behaviour, system-level barriers, patient-provider-parent communication issues, lack of person-centred care, stigma, and culture emerged as significant barriers to accessing healthcare for autistic children.

Conclusions

Families of autistic children experience several barriers to accessing healthcare. Recommendations for those planning services and clinicians are discussed.

Citation: Babalola, T., Sanguedolce, G., Dipper, L. et al. Barriers and Facilitators of
Healthcare Access for Autistic Children in the UK: a Systematic Review. Rev J
Autism Dev Disord (2024).

https://link.springer.com/article/10.1007/s10803-024-06556-3

Abstract

To assess caregiver-reported barriers and facilitators to receiving a diagnosis of Autism Spectrum Disorder (ASD) and accessing services as well as the influence of personal and cultural factors.Participants included 29 parents whose children had been diagnosed with ASD between January 2019 and November 2021 while receiving primary care at one of two urban, hospital-affiliated clinics. Semi-structured interviews and surveys were conducted between May 2022 and June 2023 in both English and Spanish. Transcripts were coded and themes developed using thematic content analysis. In the survey portion of the study, 80% of parents said the experience of getting the diagnosis was “very easy/somewhat easy,” while 28% of parents said the process of accessing autism services was “very difficult.” Four general categories emerged from the qualitative analysis: (1) experience getting the diagnosis, (2) service navigation after diagnosis, (3) need for parent advocacy, and (4) perception of condition by others. Parents generally reported positive experiences with their pediatricians, but some felt their concerns were discounted due to personal factors. The most common frustration expressed was difficulty accessing Applied Behavior Analysis therapy after a diagnosis due to long waiting lists, staff turnover and poor quality. Many parents felt that it would be helpful to have a family navigator to assist with paperwork, insurance complexities, and service access. Parents reported many challenges obtaining an autism diagnosis as well as accessing services. Widespread system change will be required to meet the needs of families equitably and effectively.

Citation: Rea, C.J., Lesch, K., Hernandez, B. et al. “I’m His Voice”: Parent Perspectives on Obtaining an Autism Diagnosis and Services and the Influence of
Personal and Cultural Factors. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06556-3

https://pubmed.ncbi.nlm.nih.gov/36409392/

Abstract
This study aimed to explore experiences of support after adulthood autism diagnosis. In this mixed-methods survey study of 137 adults, we found that most common formal supports received were counselling and mental health. Common unmet support needs were sensory sensitivities and accessing other services. Cost, lack of information, and fear of not being taken seriously were common barriers. Informal support was mainly helpful for self-understanding and emotions toward diagnosis. Qualitative findings included difficulties accessing formal support, need for practical quality-of-life supports and support from autistic peers and online communities. Based on these findings, future development of supportive interventions should address unmet needs, improve access, and explore the integration of autistic peer support and online support into formal services.

Citation: Huang, Y., Arnold, S.R.C., Foley, KR. et al. Experiences of Support
Following Autism Diagnosis in Adulthood. J Autism Dev Disord 54, 518–531 (2024).
https://doi.org/10.1007/s10803-022-05811-9

Open access article: (https://journals.sagepub.com/doi/full/10.1177/13623613231196084)

Abstract

Autistic individuals with intellectual disability are at greater risk of experiencing anxiety than their non-autistic peers without intellectual disability. Anxiety in this group may present as behaviour that challenges, often leading families to reach out to healthcare or support services. However, many families experience difficulties accessing services and, due to the lack of research into evidence-based anxiety interventions for people with intellectual disability, may not receive individualised support once in a service. This study explored caregivers’ experiences of accessing services for autistic individuals with intellectual disability, and their considerations when developing new interventions for this population. Interviews and focus groups were completed with 16 caregivers of autistic people with intellectual disability. Reflexive thematic analysis was used to develop five themes about service access experiences, and three themes about caregiver considerations for anxiety interventions. Caregivers reported that their experiences of accessing services did not meet their expectations, and considerations for future anxiety interventions were often reflective of this. Interventions being flexible to family circumstances to aid accessibility, the embedding of peer support in services, and skills that can be generalised across the lifespan could be applied when aiming to improve outcomes and develop interventions for this under-served population.

Citation: Hughes, J., Roberts, R., Tarver, J., Warters-Louth, C., Zhang, B.,
Southward, E., Shaw, R., Edwards, G., Waite, J., & Pearson, E. (2024). ‘It wasn’t
the strategies on their own’: Exploring caregivers’ experiences of accessing
services in the development of interventions for autistic people with intellectual
disability. Autism, 28(5), 1231-1244. https://doi.org/10.1177/13623613231196084

Open access article: (https://journals.sagepub.com/doi/full/10.1177/13623613211028000)

Abstract
Despite the high prevalence of co-occurring autism spectrum disorders and mental health condition(s), there exist substantial barriers to mental health treatment for autistic individuals. These barriers are exacerbated by a lack of mental health provider training and self-efficacy in providing adapted services to autistic individuals. One method which has been effective in mitigating similar service gaps is the Extension for Community Healthcare Outcomes (Project ECHO) Autism model, a tele-mentoring platform that connects primary care physicians to autism spectrum disorder experts to improve physicians’ knowledge, self-efficacy, and practice. This study developed and implemented a pilot mental health version of Project ECHO Autism designed to increase mental health provider knowledge, self-efficacy, and problem-solving. Community mental health providers (N = 51) participated in the 6-month Project ECHO Autism including mental health–focused didactics and provider case presentations. Analysis of pre- and post-measures revealed improvements in all domains, including significant increases in provider knowledge of autism spectrum disorders, self-efficacy, and problem-solving. Participants additionally reported high satisfaction with their experience. Taken together, preliminary results indicate that Project ECHO Autism may be a feasible, accessible, and effective method for increasing mental health provider competence and ultimately increasing access to services for autistic individuals who have co-occurring mental health diagnoses.

Citation: Dreiling, N. G., Cook, M. L., Lamarche, E., & Klinger, L. G. (2022). Mental
health Project ECHO Autism: Increasing access to community mental health services
for autistic individuals. Autism, 26(2), 434-445.