The UK ASD+ Study: Co-Existing Conditions of Children with ASD, Unmet Needs for Services and Impact on the Family

Background:  

Children with autism spectrum disorder (ASD) have multiple co-existing emotional and behavioural conditions ranging from disorders of sensory perception to psychiatric co-morbidities. These co-existing conditions add a significant burden to the care of children with ASD.

Objectives:  

• To identify the prevalence of parent/carer–reported unmet needs regarding support for co-existing conditions in children with ASD

• To understand the interactions between co-existing emotional and behavioural conditions, parents’ unmet needs regarding the services received and the impact on family.

Methods:  

Parents were recruited from either the population-based Database of children with ASD living in the North East of England (Daslⁿe), or a research register - the Autism Spectrum Database – UK (ASD-UK). 630 families responded to a postal survey that included parent report questionnaires about co-morbid psychopathology (ASD-CC – Autism Spectrum Disorder Comorbidity – Child Version) and problem behaviour (ASD-PBC – Autism Spectrum Disorder Problem Behaviour – Child Version) in children. Questionnaires about parents’ unmet needs, and Impact on Family (IOF) were also completed. ASD-CC and ASD-PBC were used to define co-existing emotional and behavioural conditions. The parent questionnaire on unmet needs was developed with the help of parents of children with ASD and covered services received in relation to feeding, sleep, anxiety, hyperactivity, other behavioural problems and sensory issues.

Results:  

More than two-thirds of families had at least one unmet need; only 30% of families had their needs for support for managing co-existing conditions fully met. Parents of children with moderate to severe impairment in co-existing emotional and behavioural conditions (as defined in the ASD-CC), had greater unmet needs than parents of children with no/minimal impairment (2.96 vs. 1.51; p=.000); they also reported greater impact on the family (45.45 vs. 35.39; p=.000).

Two linear regression models were built with total unmet needs and impact on the families as the criterion variables. For unmet service needs, total co-existing emotional and behavioural conditions (β=.440; p=.000) and younger age (β=.132;p=.003) contributed significantly to the model while type of diagnosis, gender, language level, school type and sibling/s with ASD did not make a significant contribution.

For impact on the family, total co-existing emotional and behavioural conditions (β=.513; p=.000), total unmet needs (β=.155; p=.000), siblings with ASD (β=.089; p=.015) and type of ASD diagnosis (β= -.082; p=.033) contributed significantly to the model while age, language level and type of school made no significant contribution.

Conclusions:

Co-existing emotional and behavioural conditions had a direct significant impact on the family. Unmet service needs had an amplifying effect on this relationship. Improving support/intervention services for parents of children with ASD and co-existing emotional and behavioural conditions is necessary in an attempt to reduce the impact of these conditions on family life.