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:
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.
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.
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.
Breastfeeding a baby with Down syndrome can sometimes present challenges, but with the right information and support, many can breastfeed successfully. As part of World Down Syndrome Day, here we present two pieces from mothers of children with Down syndrome. First, Sarah gives her tips on successfully breastfeeding a baby with Down syndrome. Then Alice gives some pointers to those supporting families of children with Down syndrome.
Sarah is a BfN peer supporter and mother to Zephaniah. Here she gives her ten top tips for breastfeeding a baby with Down syndrome. You can read more of Sarah and Zephaniah’s story on Sarah’s blog, Chromosomes and Curls.
So you have decided you would like to breastfeed your baby. There are so many benefits in breastfeeding and these can apply even more so to babies with Down Syndrome. Breast milk can boost your babies immune system and provide protection against numerous auto-immune disorders such as celiac disease, allergies and asthma to name a few. The act of breastfeeding itself will strengthen your babies tongue, lips and face which helps with future speech development.
Sadly there is a myth that babies with Down Syndrome cannot breastfeed and I’ve heard many stories of mums not being supported or being told their baby won’t breastfeed so not to bother trying by various healthcare professionals.
Whilst it’s absolutely possible for many babies with Down Syndrome to breastfeed efficiently and successfully, there are some factors that may arise which can impact on establishing feeding. Medical complexities, low muscle tone and lack of suck, swallow, breathe co-ordination are some of the additional challenges facing babies with Down Syndrome. As a result some mums will breastfeed with expressed breastmilk from a bottle/tube and others will move onto formula milk.
I have been a breastfeeding helper with the BFN (the Breastfeeding Network) for around 5 years and Zephaniah, my baby with Down syndrome, is my second breastfed baby. I had a pre natal diagnosis and one of my major fears and concerns was whether I would be able to breastfeed. Thankfully I was surrounded by wonderfully supportive people who reassured me that it would be hopefully be possible! We had a slightly rocky start and I had to express almost exclusively for the first 3 weeks whilst bottle feeding and using an ng tube whilst we were in the special care unit and in the first week or so at home. Zephaniah is now four years old and breastfed until he was 2.5.
Here are my top tips! I would love for any other breastfeeding mums (or dads) to share any of their top tips in the comments.
1. Find your support during pregnancy This is so important when pregnant with any baby. It’s something I learnt in hindsight after I had my first baby. The immediate post partum period can leave a woman feeling vulnerable, emotional, hormonal, physically in pain and sometimes the thought of trying to seek out where you can get support from can feel overwhelming. During pregnancy pop along to your local breastfeeding support group or La Leche League meeting and have a chat. Ask what support is available in hospital in the immediate post natal period. Have the breastfeeding helpline numbers to hand.
2. Colostrum Harvesting Speak to your midwife about harvesting some colostrum in the last few weeks of pregnancy. This is expressing and collecting colostrum. They can show you a correct technique and provide you with syringes to collect the drops in. This will be beneficial in the early hours/days if your baby struggles to latch straight away or needs expressed milk/supplementation.
3. Donor Milk Policies Talk to your hospital about their policies and availability of donor milk/milk bank if this is something you would prefer your baby to have over formula should you be required to supplement your baby with milk. Hospitals have different guideline that they follow so if you have something in place with them it will make things easier when the time comes.
4. Be prepared to pump There are many reasons you may need to express breastmilk for your baby. It could be that your baby is struggling to latch or it could be due to a nicu/scbu stay, or baby being too sleepy to feed. If you baby has a heart condition or other medical issues going on then they might tire easily. Whilst you are in hospital you should be able to access a good hospital grade double pump. There are some companies that hire out hospital grade pumps at home or you can use a high street brand electric or manual pump. Some babies with Down Syndrome will breastfeed with no problems from the beginning, others, like any baby, may take longer to establish effective, successful feeding. Some mums will decide to pump exclusively for their babies for whatever timeframe they choose to. I pumped for around 3 weeks with Zephaniah before he was effectively feeding at the breast. I know a mum who pumped for 5 months before getting her son to feed directly at the breast.
5. Be wary of the phrase ‘It’s a Down Syndrome issue’ Don’t assume or allow anyone to dismiss problems you are facing as being ‘a Down Syndrome issue’. As a breastfeeding helper I have seen many women with typical babies facing all sorts of difficulties when establishing breastfeeding. Position and attachment, tongue tie, sleepy babies, being pushed into formula top ups, and mis information and awareness of typical newborn behaviour patterns are common reasons for struggling and all of these same things can apply to you and your baby with Down Syndrome as well as some additional challenges your babies may face. The main additional challenges your baby may face is difficulty latching and feeding due to low muscle tone, taking longer to establish a breathe, suck, swallow routine, being more sleepy or tiring easily. If your baby has complex medical issues such as a heart defect or anything else requiring surgery then there may be pressure for your baby to gain a certain amount of weight in a specific timeframe and sometimes this can make establishing breastfeeding a challenge.
6. Comfort and support Low muscle tone in a baby can often make the baby feel heavier or floppy and more of a challenge to hold whilst breastfeeding. It’s important for your comfort, and your baby’s, that you are both well supported with good position and attachment. A suitable chair, a supportive breastfeeding pillow or your own cushions can help with this. Babies with low muscle tone will often brace their feet against something such as the arm of the chair to stabilise themselves and this can lead to arching which can impact on the positioning of the feeding. You may also want to give additional support to the babies head whilst making sure you aren’t restricting their movement.
7. Dancer Hand Position. This is a technique that can assist when a baby has low muscle tone. You start by holding the breast in the C-hold (thumb on top and 4 fingers underneath) but support the breast with only 3 fingers leaving your index finger and thumb free to hold the baby’s cheek on either side, forming a U shape with the baby’s chin in the bottom of the U. This keeps the weight of the breast off the baby’s chin and helps keep the head steady. This can really help your baby to maintain a good latch. In the early days of feeding Zephaniah he really struggled to maintain a latch and without adequate chin support he would slip off the latch frequently. I would always have to feed him with a muslin cloth underneath as he leaked so much milk out of his mouth. As he got bigger and stronger so did his latch.
8. Skin to skin. Make lots of time for skin to skin contact with your baby. This will help establish your milk supply and raise oxytocin levels. Whether you have a prenatal or post natal diagnosis, the immediate time after birth can often be traumatic and confusing. Your baby may be in the nicu or scbu where it can sometimes be more of a challenge to easily have skin to skin with your baby so it will need to be intentional. You may be feeling a variety of emotions and some mums may struggle to initially bond with their baby after having a surprise diagnosis. It’s normal to go through a range of emotions from sadness,to grief, to guilt, to anger and everything else in between. It’s also normal to not feel any negative emotions and have no issues with bonding, everyone is different and all feelings are normal.
9. Weight chart and red book. In the UK all babies are issued with a red book at the hospital which contains medical information and growth charts/developmental information. Make sure you are given the green Down Syndrome insert which contains specific weight/growth charts as babies with Down syndrome can grow at a different/slower rate to typical children. Your baby may seem to be on a lower centile on the typical graph which can lead to some health care professionals recommending top ups of either expressed breast milk or formula when it’s unnecessary.
10. Go easy on yourself and enjoy your baby Having a baby is a major event in anyone’s life and having a baby with additional needs adds an entirely different dimension on to that. Do what is best for you and your baby. Make informed choices. If you want to breastfeed and are struggling, try and find the right support and be patient as it can take time to establish.
If you are a mum who desperately wanted to breastfeed and have been unable to, know that you did your absolute best for your baby and you are amazing for giving it a go!
Alice works for the Portsmouth Down Syndrome Association, and is mother to Teddy. Here she writes about their experience, and gives some information on how best to sensitively support the families of children with Down syndrome on their breastfeeding journey.
I feel it’s important to start by explaining that I am not an expert in breastfeeding! I am a Social Worker and had chosen to specialise my career in working with people with Learning Disabilities. It wasn’t until my second son, Teddy was born, and then diagnosed with Down syndrome that I realised just how important and powerful language and knowledge is for everyone involved in supporting a family. I reached out to my local support group Portsmouth Down Syndrome Association (PDSA) when Teddy was diagnosed, and they supported my family from his diagnosis and throughout our journey to the cheeky 4-year-old he is now. I started to volunteer with PDSA and now provide education and training for Health and Social Care practitioners on all aspects of Down syndrome. It is important that families of people with Down syndrome have access to the support that they need and that this is delivered holistically.
Teddy was born by an elective c-section due to being breech. We had a blissful hour of skin to skin and Teddy was great at feeding, he latched straight away and ‘just got it’. After 24 hours in hospital recovering, both Teddy and I were discharged home (his diagnosis was missed) and we were eager to start life as a family of four. Teddy was brilliant at feeding and on day 3, we were rewarded with the fantastic news that he had gained 40g! However, Teddy’s subsequent weight gains were ‘static’, and he only gained 20g a day. Due to extended jaundice at 2-weeks-old we were seen in hospital by a doctor and consultant who suggested some screening and tests. I was grateful as had some feelings that all was not as expected with Teddy. One of these tests diagnosed Teddy as having polycythaemia (a high concentration of red blood cells in your blood). We were admitted to hospital the next day for ‘failure to thrive’. There was a suggestion that Teddy may be having difficulties getting milk, and that he may not manage with a bottle so would need a Nasogastric tube (NG). I was clear with the team that I wanted to continue breastfeeding, and so would express the ‘bottle top ups’ that they felt Teddy needed. As I had fed Teddy’s older brother successfully, I was quite confident in my ability to provide milk for him. I didn’t know what a NG tube was – but they weren’t doing that to my baby if we could avoid it!! We started the gruelling 3-hour cycle of alarms, feeding, expressing, and topping up. One nursery nurse was incredibly supportive. She sat next to me on the bed late in the evening and told me to ‘stand by my guns, and that if I wanted to feed, that I could and should’.
Slowly but surely, Teddy continued to gain weight, and so we were discharged 4 days later. At 3 weeks old, Teddy’s genetic bloodwork came back, and he was diagnosed with Down syndrome.
A few days later at a baby weigh clinic, I asked for support from a breastfeeding volunteer, I wanted to see if there was anything more I could do to help Teddy. I remember the volunteer asking my husband and I ‘how she could help’. It was the first time, that I had to tell anybody outside of our family, and health professionals that Teddy had Down syndrome. I was so very aware of the other mothers feeding their babies close by and found it difficult to speak. The volunteer was lovely and tried to support me but referred to Teddy as a ‘Downs baby’. I didn’t know how to tell her that Teddy’s diagnosis was only part of him – it didn’t define him. He was (and is) so much more than his diagnosis.
At home, we continued to ‘top’ Teddy up with expressed bottles of milk, but Teddy gained weight rapidly and so we limited these. Teddy was able to switch effortlessly between breastfeeding and bottle feeding – he wasn’t particularly bothered where his milk came from – as long as he had milk!
Breastfeeding was especially important to me. It gave Teddy and I a ‘closeness’, it helped me feel that despite a world of unfamiliar health appointments, invaded by complex health professionals and new medical language that I was doing something ‘important and normal’. Breastfeeding helped remind me that first and foremost, Teddy just needed love and milk- like all babies.
My tips to anyone supporting a family of a child with Down syndrome:
See the child first. Use positive, person first language, Teddy has Down syndrome rather than Down syndrome baby/child.
Congratulate that family on their newborn, as you would any baby – all babies deserve a warm welcome!
Signpost a family to resources like Julia’s way and their local Down syndrome support group for more guidance.
Encourage a family to advocate for how they wish to feed their child.
Many mothers of children with Down syndrome who had early issues report that their baby was breastfeeding successfully by 3-4 months of age.
Be aware that health conditions, a child’s tone or coordination may impact on their feeding, but different feeding positions may support baby better. For babies which may tire easily, it may help if milk let down happens before the baby latches. Ensure liaison with SLT if there are any concerns regarding aspiration.
Ensure that the family have a PCHR insert in their red book and so the baby is being plotted on a graph for children with Down syndrome.
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