"Seven, eight, nine,
still nothing is solved
Ten, eleven, twelve
Waiting for the fly to land
And a spoonful of porridge"
José Barata Moura, in Joana come a papa
Many of you have heard this song, right? Whether they're called Jane or John, right? And others are old enough to have sung it too, right? Although the issue of food restrictions is a very present subject in autism, that's not what I'm going to talk about. So why choose this image and this song? Probably because the issue of breastfeeding is a sensitive subject and the social media algorithm does not always let images with a woman's breasts through, even if she is breastfeeding.
How are you? asked the doctor who accompanied Anabela's (fictitious name) pregnancy. I didn't know how to answer him, says Anabela. Anabela is 28 years old and a first-time mother. Her son John (not his real name) was born a fortnight ago and Anabela went to the clinic to find out how to start her paediatric consultations. It is all new information and in astronomical amounts. Although Anabela's partner wants to do whatever it takes, the fact that Rogerio (fictitious name) has been diagnosed with Attention Deficit Hyperactivity Disorder brings some extra challenges. And on top of that there's the fact that Anabela has been diagnosed with Autism Spectrum Disorder. It's not our diagnoses that are the problem, says Anabela. We have known them long enough to be able to deal with them, she continues. The greatest difficulty is the unpreparedness of health services for neurodivergent people, she says. And even more so in such sensitive situations, she says. And totally new to me, she concludes. The birth of our son brought me back to square one in my knowledge about autism. No one ever prepared me for this. And apparently no one is prepared for us, she adds.
Low breastfeeding rates are driven by multiple bio-psycho-social factors. The breastfeeding experience is known to differ by maternal demographic factors (i.e. age, education and ethnicity), but there is less recognition of factors such as neurodivergence.
Health services, especially those within the mental health field, are beginning to be more and better prepared for autism. Apart from the assessment and intervention process, there are many other aspects to be taken into account in the responses of health services to be adapted to neurodivergent people. In the case of other health services, things are a bit different, because it is not considered that different people with different needs can benefit from them. This is the case of maternity and infant feeding, which seem to have been built on a lack of understanding of the needs of the autistic person. And there are many times when autistic puerperal women feel a loss of control and lack of social support. And more specifically related to breastfeeding, knowledge and determination there are very few autistic mothers who report a positive experience regarding breastfeeding.
Whether it be sensory challenges, pain and interoceptive differences (exacerbated by a lack of support), all these situations make breastfeeding impossible for some. And as such there is an urgent need for maternity and infant feeding services to accommodate the needs of autistic mothers, including service design and training of the health and social services person.
Around 1%-2% of the world's population is autistic, and diagnosis in adulthood is common for "the lost generation" of autistic women, with almost a quarter of mothers of autistic children identified as having autistic traits.
Autistic mothers are more likely than non-autistic peers to feel stigmatised and misunderstood by health professionals. Whether it is through the existence of situations of selective mutism, not knowing what details are important to share with health professionals or how to seek advice. There are several issues that autistic puerperal women feel throughout this period.
Breastfeeding is a highly embodied and sensory experience, requiring significant work with mothers. Sensory processing sensations have been one of the most frequently highlighted issues, creating an aversion to breastfeeding and a desire to abandon this possibility.
However, although breastfeeding is a fundamental stage, it is not the only aspect to be taken into account in this period of the puerperium. I have heard of an autistic mother whose child was taken away from her and taken to social services because they thought the mother lacked emotional skills, says Anabela. This did not happen to me, but the days I spent in the maternity ward were several times when I felt judged by various health professionals, she says.
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