The availability of services for children with autism spectrum disorder in a Saudi population

Discussion

Raising a child with ASD puts a tremendous strain on families due to competing commitments, often leading to initial social withdrawal with later reintegration into social networks.9 Providing adequate autism services is therefore critical for supporting these children and their families. Our study documented significant deficiencies in the availability of autism services in our region with limited access to outside referrals for deficient services, as perceived by the professionals working in these centers. Up to 57% of the study participants identified important and needed services that were not available at their center. A recent study from a developing country identified similar limitations in service availability with difficulties in community-based services and in the provision of ASD specific interventions.10 In our study, major defects were recognized in providing programs for home care and outreach, family recognition incentives and rewards, integrative educational programs, and occupational therapy. Another study documented that evidence-based practices for students with autism are rarely incorporated into community settings, and little is known about the quality of implementation.11 Starting to integrate these children with public school systems is urgently needed in our region. Teachers in public school special education classrooms can learn to implement evidence-based strategies; however they require extensive training, coaching, and time to reach and maintain moderate procedural implementation fidelity.11

Another important deficiency that was identified by our study is the lack of provision of adequate sources of financial counseling and support for families of children with ASD. This may be related to the nature of the included autism centers that were mainly private (10 out of 12), however, other studies documented similar problems.12,13 The most common out-of-pocket expenditure types, even with private medical insurance, were medications, outpatient services, and dental care.12 These families are frequently faced with significant financial and employment difficulties resulting from the increased demands for services required for their autistic children.13 Caregivers of children with ASD were more likely to report financial difficulty, cutting work hours, and stopping work. This area needs urgent attention in our region as there is no doubt that having a child with ASD carries a negative impact with a significant financial and employment burden on the family. In addition, professionals in these centers cited several obstacles to providing adequate services, particularly related to parental involvement, child’s behavior, and hygiene. This may be related to the cultural, educational, and socioeconomic backgrounds of the affected families. Focused educational campaigns and parental training should be developed to target this area.

There are some limitations to our study. Our sample was not large enough, and with female predominance. However, it was representative of the autism workforce as it involved a wide range of governmental and private centers with variable ages, training, and experience. Reporting bias may have affected the results since the questions on the availability of services are predisposed to subjective judgments and recall bias. Finally, our questionnaire was not previously used or validated in other studies. We conclude that significant deficiencies exist in the availability of autism services in our region. Access for referrals for important services is also limited, as perceived by the professionals working in these centers. We identified several areas that can be targeted to help develop, promote, and improve the provided services to children with ASD. Future research is needed to address autism services across the whole country and try to identify barriers to the availability of deficient services. Such efforts should focus on confirming the availability of such services through means other than employee inquiry, and also examining the utilization and efficiency of the available services.