Exploring the experiences of postnatal support for autistic mothers
Research type
Research Study
Full title
The experiences of Autistic mothers and maternity staff in both seeking and offering postnatal support.
IRAS ID
332210
Contact name
Barbara Mezes
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
1 years, 9 months, 0 days
Research summary
Summary of Research
Aim: To identify:
1. What psychosocial barriers and facilitators do Autistic mothers experience and perceive in accessing and using postnatal support?
2. What psychosocial barriers and facilitators do maternity staff experience and perceive in offering and providing postnatal support to Autistic mothers?
Objectives
The objectives of this study include exploring Autistic mothers’:
- Experiences and perceptions of the postnatal support being offered.
- Perceived and experienced psychosocial barriers and facilitators to accessing and using postnatal support, including mental health support.
- Perceived and experienced psychosocial barriers and facilitators to engagement with professionals involved in postnatal support.
And maternity staff’s:
- Experiences and perceptions of Autistic mothers accessing postnatal support.
- Barriers and facilitators experienced during offering or providing postnatal and/or mental health support.
- Perceived and experienced facilitators and barriers to making reasonable adjustments during the postnatal period for mothers to cater for specific challenges related to Autism.Summary of Results
Theme's identified summarised below:
Seeking help within a complex system.
Sub theme's of this were:
Asking for help: It was found that mums often didn’t know what support was available, what support was for and how to access it. When reaching out they could find it hard to be listened to. Mothers would sometimes avoid reaching out because it was difficult or there were worries about being judged. They also found navigating healthcare systems hard. Staff found that they needed to reach out more assertively instead of waiting for mothers to ask for help. They noticed that processes, like initial phone calls made access more difficult and that there were fewer autistic clients known to them in their services.Bad experience as a barrier: A majority of mothers reported previous bad experiences in healthcare (both in the perinatal period and generally), which led to increased anxiety and withdrawal from support for themselves and feeling more anxious in accessing support for their baby. There were worries about being misunderstood by professionals and seen negatively. Staff spoke about working with autistic clients who’d had bad experiences and needing to repair the relationship. They also shared how important they felt offering autistic mums good support was.
Becoming my own expert: Both groups recognised that autistic mothers were really dedicated to being knowledgeable about their child and parenting. However, mothers found that their research was often motivated by not getting the right or clear information from staff. Experiences with less knowledgeable staff negatively impacted their trust of the professional. Staff who were less experienced were less confident in supporting autistic mothers, and were worried about getting it wrong, and not providing what is needed. Some mothers could notice when staff felt this way. With experience this seemed to improve.
Training - an unsafe gap: Most participants identified a need for staff to be better trained in autism and supporting autistics. Mother’s found staff who did not have a good understanding invalidating, and felt misunderstood. Additionally, they found experiences with knowledgeable or compassionate staff supportive and validating. Staff acknowledged a knowledge gap across healthcare, and current training being unfit for purpose. In place of training staff spoke about peer support, supervision and linking in with their teams as how they filled this gap and sought support. However, there is an increased risk of stereotyped or untrue information being taken as fact.
Addressing Practical needs: which spoke to the subthemes below:
Reducing practical demands: Mothers spoke about a big increase in demands in the early postnatal period, and needing time to adjust and adapt. This also impacted on some of their autistic needs such as routine, preferences and sensory experiences. Having family and a support system who could help manage practical demands helped in this period. It allowed mothers to adjust to their new normal. Staff also recognised the adaptations in this period could be tricky for autistic mothers and spoke about trying to adapt their support to help mitigate this.Adaptations to practice: Adaptations were identified by all to be important, and the absence of adaptations were experienced by mums as restrictive or dismissive. Adaptations to the environment, need for concrete examples in recommendations and reassurance, extra time, flexibility and exact appointment times were all identified. These allowed mothers to feel more in control and less anxious in what is already a tricky period. However, mothers who received a bed off the ward this was often not related to her autism but a mental health need or luck. Suggesting more needs to be done to implement adaptations. Adaptations were often not considered or put in place. Staff who were interviewed discussed adaptations they put in place and appeared to be champions in neuro affirmative practices. Staff and some mums felt that support needs to be offered and begin before birth so mothers know what to expect postnatally.
A need for direct communication: Autistic participants identified challenges with unclear communication and conflicting advice from professionals. Both groups felt clear, unambiguous and direct communication was key for good support. This also meant adapting communication where needed for autistic clients who are better able to communicate using alternative methods. Including written communication, or an advocate/family member to speak up.
Diagnosis as a ticket to support: Professionals spoke about being aware of a diagnosis helped them feel more confident in having proactive conversations about making adaptations to their support. Mothers recognised not having a diagnosis as a barrier to support and felt this reflected a wider issue regarding women receiving a diagnosis. Staff also noted recognising autism in clients and sometimes being unsure what do, some would put adaptations in place without discussion and others felt it wasn’t their place to bring it up. They recognised for some this is the most prolonged contact with health services mothers would have.
Relationships helping or hindering, which spoke to the below subthemes:
Attuned to baby: A strong connection between some mothers and their baby was recognised by most participants. Mothers spoke about the love they had for their baby, and staff noted the commitment and resilience mothers had. Some participant from both groups identified that there could sometimes be challenges for autistic mothers to recognise needs a baby had that were different to her own, i.e. for social interaction or physical touch. Both groups spoke about the challenges of balancing mothers autistic needs with the babies needs, and mothers often pushing their needs aside for baby’s.
Professionals knowing me: The relationship between mothers and professionals was identified as a significant factor in the outcome of support. Mothers spoke about masking needs and not wanting to be seen poorly by professionals, which could mean missed opportunities for support. Staff recognised knowing a mother meant they could pick up on signs when things were not okay and offer help. Both groups spoke about scrutiny of autistic mothers and the risk of mums being misunderstood leading to an escalation to safeguarding, the mental health act or children being removed. Professionals felt having a relationship and knowing a mother helped them challenge this, contain any perceived risk to avoid escalation and instead trying other things first. Professionals could contextualise a mother if they know her, instead of unhelpful/untrue narratives being adopted, like ‘shes a bad mum’. Continuity of care was key to build a relationship, and meant professionals could create a safe space for mothers and mothers could better understand and trust motives of professionals.
Ups and downs of family support: Family support for most mothers was key. They were found to act as advocates and encourage mothers to speak up about difficulties she might be having. They could be seen as a ‘middle man’ to reduce the social demand from professionals. Staff agreed family were good for advocates, however one noted this could sometimes impact the autonomy a mother could have and be ‘over supportive’ and impact psychotherapeutic work. Mothers also recognised a “pressure” from family in this period, to see baby and to take parenting advice. Leading to some additional challenges at times. For mothers without family support it was a felt loss, and it was seen that healthcare support became more important to meet emotional and mental health needs. Staff also recognised in therapeutic work that an absence of family support sometimes limited the work.
REC name
East of Scotland Research Ethics Service REC 1
REC reference
24/ES/0019
Date of REC Opinion
22 Mar 2024
REC opinion
Further Information Favourable Opinion