“We were on our own”: Mothers' experiences navigating the fragmented system of professional care for autism

Fragmented health and well-being services as contributing barriers in overcoming the unmet needs of a population with special needs

“…Earlier studies identified several factors affecting parents’ care of their children with special needs, such as inflexibilities around work time and inadequate welfare assistance 4. However, Brewer recognises a previously unheeded concern — the decentralisation of healthcare delivery and how it affects the parents of autistic children 3. This article also supports the findings of other studies that the parents most affected in these instances are women, especially single, and low-income mothers 5…”

“…However, information on how decentralisation or fragmentation affects healthcare receivers and their caregivers requiring multidisciplinary approach is limited. Brewer’s study examines how the subdivisions of professional jurisdictions of childhood disabilities between and within medical and educational institutions potentially creates more work for parents and increases the possible compromises they have to make to manage their time and workforce participation 3…”

“…However, the lack of coordination and navigation between these multiple service providers causes parents to lose their valuable work-time. Consequently, affluent parents start to depend on spouse’s income that may provoke gender inequalities and destabilise the marriage 3 6. Low-income and single parents turn to social welfare that barely meets their needs and wastes their potential merits, education and skills to the available workforce 3 6.…”

“…Consequently, affluent parents start to depend on spouse’s income that may provoke gender inequalities and destabilise the marriage 3 6. Low-income and single parents turn to social welfare that barely meets their needs and wastes their potential merits, education and skills to the available workforce 3 6. Evaluation of the fragmented healthcare and educational services for children with autism and other disabilities and the ongoing trend of super-specialisation and sub-specialisation of the medical professions should be prioritised.…”

L’autisme à Marseille Nord : inégalités territoriales, précarité et pénurie de services publics

“…Élever un enfant qui présente des troubles du spectre de l'autisme (TSA) a un impact considérable sur la vie familiale en termes de stress parental, de qualité de vie, d'activité professionnelle, de retentissement sur la fratrie, d'isolement et de conséquences financières [1][2][3][4][5][6][7]. Le rôle de la famille, et en particulier des mères est central.…”