As part of World Autism Acceptance Week, BfN and National Breastfeeding Helpline Helper Katrona draws on her own experiences to share some information about breastfeeding when you are on the autistic spectrum.
The term autistic will be used here instead of a person with autism because many people with autism (including the author) see it as part of who they are and not just something they have and therefore is their preferred term.
Thanks to the media, when people think of autism, they often think of stereotypical autism – male, non-verbal, rocking back and forth or stimming (repetitive movement) or being a savant (having special skills, like Dustin Hoffman in the film Rain Man).
Autism is not an illness, it just means that your brain works in a different way from the general population. It can mean that you have difficulty with social interactions and communication – it is said that up to 93% of communication is through body language, so it can be hard when you are depending on the 7% verbal component to understand what people are meaning when they speak. Sensory issues – your senses are too high or dulled meaning you experience touch, sight, sound too intensely or have trouble recognising and feeling changes in them. Autistic people often like order and certainty in life, have black and white thinking and can find comfort when the world follows logical rules.
Like myself, many females who are diagnosed with autism are diagnosed at a later stage of life instead of childhood, usually after they have had their own children.
So what has this to do with breastfeeding?
Well first of all females can be autistic, have children and breastfeed. Due to diagnosis criteria and the fact that from an early age girls learn to mask (changing your behaviour to fit in to what society deem socially acceptable) instead of a diagnosis of autism they are misdiagnosed with anxiety or depression. This may mean any challenges faced when breastfeeding are not addressed
The challenges faced by autistic breastfeeding mothers vary and can include:
Sensory issues
Feeling “touched out” and “touch overload” being misinterpreted as a feeding aversion.
Interpreting touch as pain or having less sensation of pain and not realising damage is being done to the nipples.
Communication
Phrases like “you are looking for three dirty nappies a day and five wet nappies” – does this mean if my baby is peeing ten times a day or pooping after every feed is it a problem? Vague terms like “some mums may find” and “heavy nappies” can be confusing and cause over worry and anxiety.
Trouble taking in large amounts of instructions at one time or focusing on breastfeeding and reading detailed studies and both cause confusion.
Changes
There is a lot of uncertainly with babies, they don’t do what the books say they will, they change their routines and when your life is easier if there is an order to it and predictability, dealing with a new born can be very overwhelming. The lack of sleep and uncertainty can disrupt coping methods and exasperate the effects that autism can have on your life.
These can all be negative when breastfeeding with autism but there are plenty of positives as well. Breastfeeding can cut down on anxiety and worry – there is no need to measure formula out, make sure bottles are properly sterilised. Can help with mother/baby bonding by bringing a sense of normality to the mother, being able to do what neurotypical mothers do, and not feeling so different. Cuts down on sensory overload – the easiest way to settle a crying baby is to stick it on your breast, stops crying instantly, no need to wait for a bottle to be prepared.
Most of the challenges can be overcome or lessened by good communication with health care providers and supporters, thinking about the individual problems and finding new strategies and coping methods to address them. Many autistic women can be very determined, some may say stubborn but they know how much they can deal with and put up with. Understanding this and remembering if goals need to change, like the introduction of formula top ups, can be really upsetting to autistic mums but having research which they can read and study further can really help.
Some simple things like checking communication is going both ways, and finding strategies for coping, no matter how unusual they are can make a big difference to an autistic person’s breastfeeding journey.
Some links for more information and support:
The National Breastfeeding Helpline
Breastfeeding mums on the Autistic Spectrum Facebook page
Breastfeeding with a disability Facebook page
The Curly Hair Project
National Autistic Society – Autistic Women & Girls
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