Intense connection and love: The experiences of autistic mothers.

LAY ABSTRACT: For many women, adulthood involves becoming a mother. Knowledge of how motherhood is experienced by autistic women is currently poor. Poor knowledge has a range of negative consequences and can lead to inappropriate support. In this study, nine autistic women were interviewed about their experiences of motherhood. Seven of the nine mothers had an officially diagnosed autistic child, the final two mothers also suspected at least one of their children to be autistic. Systematic in-depth analysis of interview transcripts identified a range of common themes. Participants largely experienced motherhood as joyful, rewarding, and enjoyable, though managing children's needs had a profound personal impact. Participants reflected on the need for self-care and self-acceptance, resulting in personal growth and adaptation. Participants also spoke of strong bonds, feelings of intense connection, and a range of shared experiences with their children. It was also clear that autistic motherhood is associated with a series of challenges unlikely to be experienced by non-autistic mothers, including the necessity of negotiating misunderstandings from others. The findings demonstrate that, generally, professionals need to be better educated on how autism presents in adulthood, including the fact that autistic women often engage in behaviour to mask their true self. Professionals need to know that there is potential for mismatching between emotional experience and facial expression, that autistic women have sensory needs (especially in pregnancy). Professionals frequently struggle to effectively take the needs and perspectives of autistic mothers into account, resulting in profoundly negative consequences for the mother.

'I was exhausted trying to figure it out': The experiences of females receiving an autism diagnosis in middle to late adulthood.

Females often receive autism spectrum condition diagnoses later than males, leaving needs misunderstood. This study aimed to explore the lived experiences of female adults diagnosed with an autism spectrum condition in middle to late adulthood. Eleven autistic females diagnosed over the age of 40 years completed semi-structured interviews, analysed using Interpretative Phenomenological Analysis. Four superordinate themes emerged: A hidden condition (pretending to be normal and fitting in; mental health and mislabelling), The process of acceptance (initial reactions and search for understanding; re-living life through a new lens), The impact of others post-diagnosis (initial reactions; stereotyped assumptions), and A new identity on the autism spectrum (negotiating relationships, connections and community; changing well-being and views of the self; the meaning of diagnosis). Findings highlight several factors not previously identified that affect late diagnosis in females, including widespread limited understandings of others. Diagnosis was experienced by several participants as facilitating transition from being self-critical to self-compassionate, coupled with an increased sense of agency. Participants experienced a change in identity that enabled greater acceptance and understanding of the self. However, this was painful to adjust to at such a late stage.

A thematic synthesis of siblings' lived experiences of autism: Distress, responsibilities, compassion and connection.

BACKGROUND: Despite increased understandings that the whole family system is influenced by a family member being diagnosed with an Autism Spectrum Condition (ASC), the experiences of siblings can be overlooked. However, recently understanding of siblings' experiences has begun to develop via qualitative studies. AIMS: This review aimed to systematically identify, appraise and review the qualitative literature investigating the lived experience of siblings of autistic people. METHODS AND PROCEDURES: Six databases were systematically searched for studies reporting empirical qualitative data on the lived experience of neurotypical siblings of autistic people. Eighteen studies met inclusion criteria and were analysed using Thematic Synthesis. OUTCOMES AND RESULTS: Data synthesis revealed four superordinate themes; Roles and responsibilities, different to what may be expected typically; Impact of behaviours, particularly aggressive behaviours; Process of adjustment, including learning and developing empathy and acceptance; Interpersonal experiences with others and between siblings. CONCLUSIONS AND IMPLICATIONS: A narrative of love and empathy was present throughout. However, several participants also experienced significant difficulties affecting their mental health. Findings suggest a sense of agency, understanding ASC, time spent alone with parents, supportive environments and the chance to relate to other siblings as protective factors in facilitating positive psychological wellbeing for siblings of autistic people.