Autistic mothers are more likely to report post-natal depression compared to non-autistic mothers, according to a new study of mothers of autistic children carried out by researchers at the University of Cambridge.
A better understanding of the experiences of autistic mothers during pregnancy and the post-natal period is critical to improving wellbeing. The results are published in Molecular Autism.
The team recruited an advisory panel of autistic mothers with whom they co-developed an anonymous, online survey.
After matching, this was completed by 355 autistic and 132 non-autistic mothers, each of whom had at least one autistic child.
Sixty percent of autistic mothers in the study reported they had experienced post-natal depression. By comparison, only 12% of women in the general population experience post-natal depression. In addition, autistic mothers had more difficulties in multi-tasking, coping with domestic responsibilities, and creating social opportunities for their child.
The study also found that when autistic mothers disclosed their autism diagnosis to a professional, they were not believed the majority of the time.
Autistic women felt misunderstood by professionals more frequently during pre- and post-natal appointments and found motherhood an isolating experience. Despite these challenges, autistic mothers reported they were able to act in the best interest of their child, putting their child’s needs first and seeking opportunities to boost their child’s self-confidence.
Dr Alexa Pohl, who led the study, said: “Autistic mothers face unique challenges during the perinatal period and parenthood. Despite these challenges, an overwhelming majority of autistic mothers reported that parenting overall was a rewarding experience. This research highlights the need for increased awareness of the experiences of motherhood for autistic women and the need for more tailored support.”
The study also found that when autistic mothers disclosed their autism diagnosis to a professional, they were not believed the majority of the time.
Professor Simon Baron-Cohen, Director of the Autism Research Centre at Cambridge, and part of the team, said: “This worryingly high number of autistic mothers who experience post-natal depression means we are failing them and their infants at a critical point in their lives.
We now need more research into why the rates are so much higher, whether they are seeking help and not getting it, or if they are not seeking help and for what reasons. A new research priority is to develop autism-relevant screening tools and interventions for post-natal depression in these mothers.”
Monique Blakemore, an autistic advocate and member of the team, said: “This vital study was initiated by the autistic community, who collaborated as equal partners with researchers in the design, dissemination and interpretation of the survey. This is an excellent example of what can be achieved through such partnership.”
Funding: The study was supported by the National Institute of Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC), East of England, at Cambridgeshire and Peterborough NHS Foundation Trust, the Autism Research Trust, the MRC, the NIHR Cambridge Biomedical Research Centre, and Autistica.
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Autism is a neurodevelopmental condition, diagnosed by difficulties in social-communication alongside a strong preference for repetition, difficulties in adjusting to unexpected change, and a profile of atypical sensory sensitivity.
The prevalence of autism is estimated at 1–2% of the population, diagnosed more often in males than females, with a sex ratio of 3:1 (male:female) [2,3,4]. Little attention has been paid to parenthood in autistic adults, despite autism being a lifelong condition [5].
There are currently no estimates of the number of autistic adults who are parents. Between 17 and 23% of parents of autistic children have the ‘broader autism phenotype’ [6, 7] and autism is partly genetic [8].
Therefore, it is possible that a number of mothers of autistic children may have undiagnosed autism and, because women are on average diagnosed later in life than men [9], some may not receive their diagnosis until they are already parents themselves. Whilst there is some literature on how the presence of an autistic child impacts family dynamics and parents [10, 11], the experience of autistic mothers themselves is relatively unexplored.
To date, only the experience of pregnancy, childbirth and the postpartum period in autistic women have been studied [12, 13]. Using qualitative methods, these studies highlighted themes important to autistic mothers [12, 13]: Heightened sensory experiences during the perinatal period, including breastfeeding; the desire for clear guidance from healthcare professionals and family; stress that follows from the perceived pressure to be a patient and perfect mother; and the stigmatisation of autistic mothers as ‘bad parents’ by healthcare professionals. However, further research of autistic motherhood, beyond the perinatal period, is needed.
The experiences of mothers with intellectual disabilities and psychiatric conditions, which are often co-morbid with autism [14], may inform our understanding of the possible experiences of autistic mothers.
Although not all autistic women have an additional diagnosis of a psychiatric condition or intellectual disability, mothers with these diagnoses may face similar challenges to autistic mothers as these conditions are all neurodevelopmental, psychological or behavioural in nature.
For women with intellectual disabilities and psychiatric conditions, motherhood is often a desirable experience [15, 16], but for mothers with a psychiatric condition, the stigma associated with their condition has a major impact on how they view themselves as mothers.
One study showed they felt as though the concept of the ‘ideal mother’ was incompatible with the negative connotations of their psychiatric condition [15]. Stigma also presents a major barrier to accessing services or seeking support from friends and family. For mothers who fear judgment of their parenting ability and fear potentially losing their child to child protection services, fear of stigmatisation may impede them from accessing services needed by their children.
This may be part of a wider feeling of being stigmatised that autistic adults report [17]. Such fears could be well founded as parents with an intellectual disability often face more scrutiny by social services [18] and are at a higher risk of having their parental rights terminated [19].
Autistic individuals are at increased risk of mental health difficulties, compared to neurotypical individuals [20]. It is unclear how this might affect autistic mothers. Feelings of isolation, fear of judgment and the stigma of autism may have an adverse effect on mental health, especially in the early stages of motherhood where women are still adjusting to their new identity [16].
A history of depression is one the highest risk factors for postpartum depression [21]. Given the co-morbidity of depression and autism [20], we would expect autistic mothers to be at higher risk for postpartum depression than are neurotypical mothers, which could isolate them further.
This may mean that autistic women require additional tailored support to meet their needs. Awareness of rates of depression in autistic mothers could help support services to anticipate their likely needs, leading to earlier identification of depression symptoms.
Difficulties with processing sensory experiences, for example issues with breastfeeding, and communicating with professionals, such as clinicians, midwives and nurses [12, 13] may be unique components of the motherhood experience for autistic women.
Autism is associated with sensory hypersensitivity, often leading to sensory overload [22, 23]. Gardner et al. reported that for some autistic women this made the physical sensation of breastfeeding unpleasant, but that autistic mothers were nevertheless able to successfully breastfeed as they felt it was in the best interest of their child [12].
The ability to overcome difficulties in order to act in the best of interest of the child may play a vital role in the experience of motherhood for autistic women.
The main objective of this study was to provide a preliminary investigation into how autistic women experience the perinatal period and early motherhood, compared to non-autistic mothers. We developed an online survey made widely available to autistic and non-autistic mothers.
We wanted to ensure that a wide range of issues were covered and that these issues were truly reflective of the needs of the autistic community. At the time this survey was developed, there was no peer reviewed, published work on autistic mothers.
For this reason, we chose to cover a broad range of topics which could inform the priorities for future research, provide some guidance for policy-makers and, most importantly, provide autistic mothers with empirical support when advocating for their individual needs.
Discussion
Motherhood in autistic women is a neglected area in autism research. Our findings demonstrate that there are aspects of parenthood which autistic mothers find more difficult than non-autistic mothers (who do not have a formal diagnosis of autism or self-identify as autistic, but who have an autistic child).
Critically, these included difficulties in communicating with professionals, negative perceptions of their mothering, such as fear of judgement of their parenting skills by others, and high rates of postpartum depression. In addition, there are challenges unique to being an autistic parent, such as deciding when not to disclose their autism. We also identified positive aspects of motherhood for autistic women and that, for an overwhelming majority of autistic mothers, parenting was overall a rewarding experience.
It is important to note that there were statistically significant differences between our groups with regard to some of their demographic characteristics, such as age, marital and educational status and average age at first birth. Future studies should aim to match groups on these variables to examine whether these influence the results.
Autistic mothers reported more difficulties interacting with professionals, such as clinicians or social workers throughout their experience of parenting. More non-autistic than autistic mothers felt they had the process of birth explained to them in a way they could understand. Our findings highlight how autistic mothers may be more susceptible to difficulties communicating and interacting with professionals during their pregnancy [13].
Autistic mothers also reported that they were reluctant to disclose they had autism. Indeed, over 80% of mothers worried that disclosing their autism would affect a professional’s attitude towards them and nearly 40% of mothers with a diagnosis reported that they rarely or never disclosed.
For mothers who suspected they were autistic but did not have a diagnosis, this increased to 75%. Previous research has shown how perceived stigma of one’s diagnosis of a disability or mental health condition can affect one’s perception of motherhood [14].
Autistic mothers in our sample reported feeling like motherhood was a more isolating experience than non-autistic mothers and felt as though they were being judged on their parenting skills, a theme also reported by Rogers and colleagues [13]. Autistic mothers were more likely to feel they were not coping as parents and to feel they were unable to turn to others for support. In addition, autistic mothers may fear this negative perception in professionals, such as clinicians or social workers, leading to a fear or unwillingness to disclose their autism.
Fear of judgement from others may be linked to interaction difficulties, where over 40% of autistic mothers found speaking to professionals was so anxiety inducing they were either unable to think clearly, or experienced difficulties in communication.
Furthermore, perceived stigma and fear of being viewed as a ‘bad parent’ might deter autistic mothers from asking for much needed tailored support. If autistic mothers are less likely to approach other parents or professionals for advice and emotional support, this could create a vicious cycle whereby parenting difficulties may become overwhelming, leading, for example, to feelings of isolation.
Our findings highlight the emotional toll motherhood may take on autistic women, which could be further exacerbated by lack of awareness and acceptance, and tailored support services. Therefore, it is important to ensure that there is a broader understanding of the challenges associated with being an autistic mother among professionals.
By furthering professionals’ understanding and awareness, this will hopefully decrease stigma associated with autism, which may be preventing autistic mothers from disclosing their diagnosis. We also hope that it will help ensure that autistic mothers are able to receive the support they require and effectively advocate for their children.
Research on the experiences of pregnancy and early infancy for autistic mothers has highlighted challenges that may be associated with sensory processing and difficulties [12, 13]. However, despite these sensory issues, most mothers in our sample were able to successfully breastfeed their child, with over 80% of autistic mothers attempting to breastfeed their first two children.
It may be that autistic mothers were able to override any unpleasant tactile sensations associated with breast feeding in order to do what they believed was best for their child, and this hypothesis needs to be formally tested in the future.
There were also no significant differences in the proportion of autistic and non-autistic mothers who had difficulties breastfeeding their first child, although an increased number of autistic mothers reported having difficulties with their second child.
It is possible that the tactile unpleasantness of breastfeeding proves too much for autistic women, that by the second child they find it much more difficult to bear. However, it is also reasonable to argue that given the cumulative average age of reported children in our study was 12 years, autistic mothers in our sample had a better recall of their experience breastfeeding their second child in comparison with their first.
If this is true, it would support previous findings that tactile sensations, such as breastfeeding, are unpleasant to autistic mothers, given the heightened processing of sensory information in autism [28]. Further research is necessary to better understand the relationship between autism and breastfeeding. As others have also reported that autistic mothers have a high degree of interest in the benefits of breastfeeding and engagement with breastfeeding [12], lactation consultants and breastfeeding support organisations such as La Leche League might be a key professional group that could benefit from further training about interacting with autistic mothers.
We also asked mothers about their lifelong experiences of parenting, which goes beyond previous research [12, 13, 29] focusing mainly on the early stages of motherhood. Consistent with findings of executive function difficulties in autism, which include poorer performances on measures of planning and mental flexibility than neurotypical adults [28], autistic mothers reported greater difficulty with multi-tasking, organisation and domestic responsibilities.
Difficulties with social-communication and planning, organising, multi-tasking, and a strong need for routine, may be exacerbated when autistic individuals are caring for their family. In a follow-up question on parenting needs, 62% autistic mothers felt that they needed extra support because of their autism.
Although executive function has been extensively researched [30, 31], how difficulties in these domains may influence autistic parenting skills is unknown. Translating interventions targeted at mitigating executive function difficulties in adult life to the specific responsibilities of parenthood may benefit the autistic parenting community.
In terms of positive outcomes, 96% autistic mothers were able to prioritise their child’s needs above their own and seek ways in which they can boost their child’s self-confidence. Findings such as these highlight how, despite the challenges with managing everyday domestic life, autistic mothers can overcome these in order to care for their child.
This was further supported by 86% of autistic mothers who reported they found parenthood rewarding. Similar to the results about breastfeeding, autistic mothers were able to overcome challenges unique to their autism, such as executive function difficulties and sensory issues, to act in the best interest of their child. Although we found a slight decrease in efforts by autistic mothers to provide opportunities for their child to socialise (which could be due to having to socialise themselves with other mothers and/or parents) 73% of autistic mothers still reported that they were capable of doing so.
In addition to autism, over 70% of mothers, both with and without a formal diagnosis of autism, reported having an additional psychiatric condition, in comparison with only 41% of our non-autistic sample.
Autistic mothers also reported being more likely to suffer from both prenatal and postnatal depression, with nearly 60% reporting having experienced postpartum depression.
Autistic individuals were four times more likely to experience depression [19, 32] and have higher co-morbidity rates with other conditions such as anxiety and personality disorders [33].
Given that autistic individuals rated improvements in mental health interventions as a top priority for autism research [34], our findings highlight how more research is needed to understand the implications of postpartum depression for autistic women.
Whilst the high rates of mental health conditions in our sample may reflect a wider issue among the autistic population, postpartum depression is linked exclusively with motherhood. Postpartum depression can have serious consequences for both mother and child, but there are effective treatments for postpartum depression and screening tools to identify those that would benefit [35, 36].
However, given that autistic mothers may withstand higher scrutiny from social services and medical professionals, be more likely to have their parental rights terminated resulting in the loss of their child [19] and fear that their parenting abilities are overall constantly being criticised and judged [13], acknowledging postpartum depression and, in turn, seeking treatment may not feel like a viable option.
Our study shows a higher rate of postpartum depression in autistic mothers than in non-autistic mothers. However, we did not employ a validated measure of postpartum depression or follow-up our questions with further details on the condition. Developing appropriate screening tools and successful interventions that specifically target postpartum depression in autistic mothers should be a new research priority. Untangling the relationships between depression, psychosocial stressors and autism is a pressing issue for autistic mothers.
We stress the importance of using a PPI model in research with autistic individuals. Themes central to autistic mothers were initially brought to our attention by the panel, and those have now also appeared in studies of motherhood in autism [12, 13, 27].
By listening to the autistic community and collaborating with them to design our research, we were able to design a study that was informed by and representative of autistic mothers, with themes about motherhood that are relevant to them.
Limitations
To our knowledge, this is the first study to address the experience of motherhood in autistic women beyond the perinatal period. Our survey did not always explore context-specific issues. Therefore, the data reported here should be viewed as exploratory. We hope that this will provide the foundations for future research and will help autistic mothers to obtain the support they require.
Our non-autistic sample may not be representative of the general population of mothers. Our non-autistic sample only included mothers with at least one autistic child and included a higher than usual proportion of women who had experienced postpartum depression. Whilst average rates in population samples are 10–15% [37, 38], 45% of non-autistic mothers in our sample reported experiencing postnatal depression following the birth of at least one of their children.
Additionally, mothers in our samples were also from predominantly Western countries, suggesting that the themes reported here may not be applicable to women from non-Western countries. Finally, 6% of mothers who reported self-identifying as autistic were not given an autism diagnosis by a clinician. This reflects that our sample of women may not be representative of both the general and autistic population of mothers and therefore may reduce the generalisability of our findings.
Furthermore, given the nature of the study, only mothers who were literate, able to understand our questions and with access to a computer were able to complete the survey, again highlighting that the results from this survey may not be representative of all autistic mothers in the population.
We also deliberately chose to compare autistic mothers with mothers who were not autistic but who had an autistic child, which allowed us to control for the potential additional stress of having an autistic child.
We referred to the non-autistic group throughout this paper as ‘non-autistic mothers’ rather than ‘neurotypical mothers’ because for genetic reasons we should assume that this group included a significant proportion of mothers with the ‘broader autism phenotype’ [7], although the average AQ-10 scores were still within the neurotypical range.
Future studies should include a neurotypical non-autistic group. We would predict that there will be significant differences between autistic mothers and a representative sample of non-autistic mothers.
Finally, the average of age of children and mothers in our study was quite high, with children being adolescents and mothers about 40 years of age at the time of completion of the survey. Responses may therefore be influenced by recall bias, whereby mothers were asked to recollect experiences, e.g. breastfeeding, that may have happened over a decade prior to taking part in this study.
Overall, it is very likely our results are not generalisable to all autistic mothers and do not represent the whole spectrum of experiences, difficulties or issues specific to autistic mothers. However, we hope that this preliminary investigation into the differences in experiences between autistic and non-autistic mothers will provide a platform for discussion and help direct future research.
Conclusions
There is a need for both increased awareness and acceptance of the experiences of motherhood for autistic women and the need for more tailored support services. Many issues that we identified could be attributed to perceived stigma of autism, lack of awareness and unmet support.
Communication difficulties with professionals, feelings of isolation and perceived judgment may create further barriers for autistic mothers to ask for the support they need. Autistic mothers also showed a higher rate of mental health difficulties, with a very high rate (58%) of autistic mothers reporting having suffered from postpartum depression. However, this study also demonstrates that autistic mothers are highly resilient and able to overcome their difficulties to put their child’s needs first.
Further research should explore the experience of parenting for autistic individuals and ensure that these findings are used to significantly improve the everyday life of autistic mothers and fathers.
Source:
University of Cambridge
