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.