Experiences and perceptions of mothers of young people with and without additional support needs and autistic spectrum disorder in relation to behaviour, maternal stress, access to services and family quality of life

Abstract

This research explores experiences and perceptions of mothers of adolescents and young adults (13-22yrs) with Additional Support Needs (ASN) in relation to stress, service provision and family and individual Quality of Life (QoL). A particular focus is the effect of having a family member with ASN who also has a diagnosis of Autistic Spectrum Disorder (ASD) or where the young person with ASN may have an ASD which has not been diagnosed. Mothers of young people from 4 groups were recruited: i) those with ASN and no ASD (n=41), ii) those with ASN and a diagnosis of ASD (n=18), iii) those with ASN, no diagnosis of ASD but with a positive score on an ASD screening measure (n=17) and iv) typically developing controls (n=17). The mothers of young people with ASN (n=76) completed standardised questionnaires about family and individual QoL, stress, service provision, child behaviour and presence and severity of ASD traits. Twenty two of these mothers also took part in a semi-structured interview about coping with issues identified as most stressful by them in the stress questionnaire. The mothers of typically developing young people (n=17) completed standardised questionnaires on individual and family quality of life and on the behaviour of their similarly aged son or daughter. Data collected via these questionnaires showed that increased severity of ASD was associated with increased maternal stress, which in turn was associated with decreased family and maternal QoL. Mothers of typically developing young people had significantly higher individual and family QoL scores than each of the three other groups. The findings from the interviews supported the questionnaire results and gave further insight into mothers’ life experiences. Mothers identified many perceived barriers to their child’s progress including: lack of support and lack of co-ordinated service provision. The results suggest that mothers of young people with ASN experience lower individual and family quality of life than mothers of typically developing young people. Parenting an adolescent or young adult with ASN is perceived as stressful and that the presence of behaviour associated with ASD is additionally stressful. Possible reasons for differences in quality of life outcomes amongst the study groups are discussed. Implications for adequate services and recommendations for future research are suggested.