Breastfeeding, Autism, Sensory Processing Disorder, and Oral Phase Dysphagia

This guest post shares a look from the perspective of a mother with a 5 year old son with neurological disorders.  Jeanie decided to share her story after seeing a thread on The Leaky Boob Facebook page asking about breastfeeding issues as potential early signs of neurological issues in an infant.   Whether you recognize yourself and/or your child in

autism and breastfeeding

My name is Jeanie and I am the author/page admin for a blog and Facebook page called Reinventing Mommy, which is all about raising my 5 year old son with Autism and multiple neurological disorders. I want to share my story in hopes that others will learn that feeding difficulties can be an early red flag for developmental concerns…

My son Jack was born on March 23, 2009 after 28 hours of labor which resulted in an emergency c-section. I had preeclampsia during the last 4 weeks of my pregnancy, so Jack was born at exactly 37 weeks. Due to the nature of my delivery, I wasn’t given the opportunity to nurse my son in the recovery room. No one even suggested it. I didn’t know it was even an option. 

The first time I nursed Jack was in our postpartum room. One of the floor nurses tried to assist me in latching the baby on and – for all I knew – it was going great. The nurse mentioned that she would be sending lactation in to see me ASAP the following day (it was nearing 11:00 PM); her reasoning was that babies born prior to 38 weeks got an automatic referral to lactation. She suggested that I send the baby to the nursery that night so I could recover a bit further, and that the baby would be brought to me to nurse. I agreed. 

The next day a lactation consultant came in. I was planning to show her just how great I was doing nursing my baby – clearly I didn’t need her at all! – but instead I was told that not only was my son not latching on at all, he wasn’t sucking properly. This began a journey of using a nipple shield, suck training, and an every 3 hour schedule of nursing Jack for 15 minutes per side then feeding him a supplemental bottle then pumping for 15 minutes. All this while recovering from major abdominal surgery. Every day I was hospitalized, lactation consultants were in and out trying to assist me. 

When I was discharged, lactation continued with phone consults. Jack’s pediatrician was of little help. No one ever said that Jack wasn’t eating normally. I just thought that this was what everyone went through. I was constantly assured that all babies can breastfeed and that I just needed to work harder. The pressure on me was enormous. I felt like a failure. 

Then came the day that Jack refused to take to the breast at all. He simply would not open his mouth for the nipple shield at all. My milk was drying up from the lack of stimulation and Jack wasn’t gaining weight, so we finally gave up and moved to a bottle and formula. 

The problem was that Jack’s feeding issues didn’t resolve with the bottle. Now that he was actually taking in liquid, he began to vomit his entire meal about 5-6 times a day. When I mentioned how much he would “spit up”, I was told that the amount really was probably no more than a couple of tablespoons. What no one truly understood was that he could fill a bowl when he spit up. No one listened when I voiced my concerns that Jack’s eating behaviors didn’t seem typical. Again, I felt like a failure as a mother, because I couldn’t do something as simple as feed my own child. 

At the age of 24 months, Jack was only able to eat purées. He couldn’t self-feed. He was nonverbal. He couldn’t climb stairs or jump. The only sounds he produced where grunts. He spent his days pacing the room and flapping his hands. He was diagnosed with Autism and – finally – someone was willing to listen to our feeding concerns. 

Jack’s developmental pediatrician and his therapy team listened to us, and we got names for what we were seeing – Oral Phase Dysphagia, which is a neurologically-based lack of coordination of the chewing and swallowing mechanisms, and Sensory Processing Disorder. Jack literally didn’t have the muscle tone in his facial muscles to chew foods, he couldn’t manipulate foods in his mouth, he couldn’t coordinate his chewing with his swallowing, but this was all assuming that we could get the food in his mouth in the first place because he was so defensive. In many ways, it was vindication in that I was not a failure as a mother, but my heart sank at knowing that my little boy had such a long road ahead of him. 

Fast forward to now…I just gave birth to my second son 8 weeks ago. My one fear – even more than him having Autism as well – was that he would have similar feeding problems as his brother. That has not happened. My new baby Andrew nurses like a champ. 

As for my sweet Jack, he works harder than any person I’ve ever known. He is an inspiration to me each day. He now speaks, though he still has a significant speech delay. He can eat foods that are either very crisp, like crackers, or bready foods. He eats about 6 foods consistently and several others intermittently. He will continue to require feeding therapy for years, but he is making slow yet steady progress. 

If there is one thing I could pass on to others about feeding concerns, it would be this – go with your gut and trust your instincts. If you feel like you child is truly struggling with feeding, don’t let doctors or anyone deter you from looking into it further. Contact Early Intervention services in your county for an evaluation, or get your child evaluated by a feeding therapist. With therapy, many children with feeding issues can expand their food repertoires, learn to enjoy eating, and become more proficient eaters.

 

Editor’s note: Does your child have a sensory processing or neurological challenges? Do you feel that has that impacted your feeding experiences? Sometimes breastfeeding problems aren’t breastfeeding problems but actually indicators of something else. I’ve heard from several moms of the last 4 years that have tried everything in addressing their breastfeeding struggles only to discover years later that there was (seemingly unrelated) neurological issues. From somewhere on the autism spectrum to high sensitivity, they have wondered if there is a connection. Maybe baby refuses to latch or latches all the time and overwhelms mom with constant breastfeeding. While it may be something else entirely, some moms do see there is a connection later on when their child is older.

I would love to hear from you if this has been a part of your journey, please comment below, share your thoughts, and if you’d like your story to be included on the website, please email content@theleakyboob.com. Thank you all so much!

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Comments

  1. Thanks for sharing your story! It is so important to tell mums to listen to their instincts – so many medical professionals are in a rush, and if it isn’t obvious, will brush you off as an ‘over anxious new mum’. The truth is though, that they don’t have exposure to these types of issues. The babies that they deal with are all ‘just’ babies, and they don’t see the more subtle medical diagnosis that may occur later in life. Very frustrating, and depressing for new mums who really need the support.

  2. Eve Laos says:

    Thanks so much for sharing your story. I have two sons as well, my oldest has SPD and ADHD . Both of my sons also had speech delays. My youngest is showing signs of SPD too. Although we didn’t have any issues with nursing we do have issues with eating now. My oldest likes things to be either crunchy like chips and popcorn, firm pears and apples or super soft like pasta. It has been a challenge especially around others who say to stop spoiling him and make him eat what the rest of us eat. I’m so overjoyed to hear others share their stories. I feel like with nip the more others talk about neurological disorders and eating issues the more others will be aware and stop with stupid and hurtful comments.

  3. Halleluja! Someone who believes me! My son is now 7, and although he breastfed till he was 4 (round about the time of his ASD diagnosis actually), the first 11 months were HELL – insufficient milk supply, very regular nursing strikes, silent reflux, only feeding in one position (lying down, in bed), and difficulties even syringe or bottle feeding (whether EBM or formula). I very strongly believe his feeding difficulties were at least partly due to his autism-related sensory difficulties, and that he *hated* being held to be fed (hence the only position he’d feed in being me flat on my back, him draping himself across me – ie no touching from me).

    I was continually told that his latch was fine – despite being in agony and having the classic “lipstick” shaped nipple when he unlatched, and being very slow to gain weight.

  4. My daughter Becca was born at 39 weeks with no complications during a repeat section. I had issues with breast feeding my first so I was ready to try again. Started off with some of the same problems with my son. Not gaining weight and having to supplement with formula. Only she hated the bottle too. It would take over an hour to feed 2 Oz and this lasted a long time as well. I couldn’t pump more then a few mls in 24 hours and stopped by 6 weeks, by 3 weeks she refused the breast. She also would not allow me to use a supplemental nursing system, as soon I put the tube in her mouth she would unlatch. She started pureed food at 9 months and want able to eat solid till after 2. She will be turning 6 at the end of this month and has Mowat-Wilson syndrome, Gerd, a g-tube for supplementation, seizures, non verbal, gastroparisis. And we are still having a hard time keeping weight on her.

  5. Kristy Gregory says:

    You have just described what we have be going through with my now 6 year son that was 9 weeks premature. He has been in so many different types of therapy all of his life. He was on baby food at 3 years old when his pediatrician told me to take him off of which scared me because I had no idea what I would get him to eat. 6 months later his endocrinologist said he was fine with him being on baby food. Well at that point I did not feel I could go backwards. When he was 4 we found this awesome feeding therapist that pointed out the first day that my son had no idea how to use his tongue nor did he have the strength. I was upset that it took over 10 therapist and 4 years including an inpaitent facility to tell us that. No one had ever said anything about that and once she pointed it out it was so obvious. I’ve been told once they reach 8 it is almost impossible to make any progress. Right now we are trying vital stem. My son is so week his 1 year old sister is stronger than him. We have started him in gymnastic hoping that will help build his core muscles that will in turn also help with his oral muscles. We have been told they are all related. About every 6 month I want to give up and a month later I get on board again. I hate that he has to live like this. He see his other friends eating all sorts of things and will try it but then gags. His 3 year old brother and 1 year old sister are always telling him to eat and take a bit because they hear us telling him that all the time.

  6. I have believed this since my son’s SPD diagnosis (He now also falls into the ASD). He never latched on. He had a vaginal but long pushing phase of delivery and he was delivered “sunny side up.” I was told I had flat nipples, used the cups, nothing improved. I had milk falling into his mouth and he still wouldn’t suck. He also was jaundiced, which apparently is from not getting enough fluids. I had a lactation consultant in and she also told me all babies can nurse you just have to work at it. I did everything. Wanting to clear his ever-worsening jaundice we went to bottle and formula. I pumped for 3 months. He was mostly bottle fed and occasionally nursed only at middle of the night feedings. Even bottle feeding wasn’t great. I called him the prince of puke, because he spit up so much. He was happy to switch a cup and gave up the bottle completely by 9 months. Solids went well, but he continued to have reflux, spitting up even after eating solids. Fortunately is generally a good eater now (we go through phases where he will eat only thing for a long period and then he won’t touch it for a year). His sister however, latched on immediately but she is my fussy eater.

  7. Heather says:

    Your story is almost identical to mine. My six year old daughter, Annie, was diagnosed with SPD at nine months and autism, generalized anxiety disorder, ADHD, OCD, ODD, speech articulation disorder, pragmatic speech disorder, and, sleep disorder at the age of 5. I am currently at student working on my masters in Intervention Services and Autism Spectrum Disorders and I would love to talk sometime about how our two stories parallel. Please feel free to get in touch with me.

  8. Valentina says:

    Jeanie,
    My 7 year old was diagnosed with SPD and Generalized Anxiety Disorder just after turning 5. This year he was also diagnosed with Developmental Coordination Disorder. He has gone through OT and feeding therapy. However, I realized there was something going on with him a few months after he was born.

    I had an awful time trying to breast feed and was made to feel like it was my fault as well. In the first few days of birth, not even the lactation consultants were able to get him to latch. He aggressively refused my breast as a newborn. I felt horrible, and eventual gave up and pumped since he wasn’t eating for days.

    He also refused new foods and textures and I was giving him puréed food way past his 1st birthday. He’d swallow mouthfuls of food whole or spit them out all together. At one point, around his 5th birthday, his diet consisted of nothing but plain pasta noddles, nuggets, crackers and Kraft Cheese Slices. Anything else caused a gag reflex. That’s when I sought the help of a feeding therapist.

    I am also convinced that his aversion and difficulty with breast feeding was a red flag for his sensory issues. I am happy others like you have made this issue public. Thank you for sharing your story! I’d be glad to discuss this with you further.

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