Breastfeeding is a profound experience for every family, but the difficulties and rewards can be different or more pronounced for families with young children who go on to be diagnosed with Autism Spectrum Disorder (ASD).  “There are currently more people diagnosed with ASD than at any other time, making ASD the fastest-growing developmental disability, yet diagnosis often does not occur until a child is 4 years old” Read more. This presents a unique challenge for parents of young children who present symptoms of Autism Spectrum Disorder and has many effects, not all of which are clearly understood, on human milk feeding and the breastfeeding relationship. In an effort to help provide support and assistance, we have compiled anecdotes and resources from families in these situations. You are not alone!

Breastfeeding might be impacted by ASD – Testimonials and Quotes from Parents

Parents of babies later diagnosed with an autism spectrum disorder report more difficulties with breastfeeding, even though the causes aren’t always clear until later on. 

• “What I didn’t notice at the time was that she used breastfeeding to escape anything that made her uncomfortable- like people, eye contact, whatever.”
• “In terms of early days, I could have used more training about sensory sensitivities — having the comparison now of the typically developing child that came next, looking back I see so much of my older son’s newborn experience through a different light. He was so miserable, and I didn’t understand why — now I see the beginnings of the sensory sensitivities that I didn’t fully understand until he had the words to tell me about them!”
• “My ASD son who is 18 now had a very difficult time with breastfeeding. He had sensory issues with being touched and low muscle tone in his jaw. So his latch and sucking wasn’t strong enough to stimulate my milk production. I had no idea he wasn’t getting enough milk until he wasn’t gaining weight and even started losing it. Breastfeeding is supposed to be an amazing bonding experience with mother and baby but because of his ASD and sensory problems, bonding with my son was almost nonexistent on his part (it was very sad) and of course to no fault of his own. To this day he is not very accepting of any type of physical affection. I think lactation nurses need to be educated on failure to thrive babies (like my son). When I tried to reach out for help on ways to help my milk production and why he was always so limp and unresponsive to touch during breastfeeding, the lactation nurses always made me feel guilty and bad, like there was something wrong with me. When my son started losing weight, I had to start supplementing him with a bottle after breastfeeding and honestly I felt like a failure but I think mainly because the lactation nurses made me feel that way. I think lactation nurses need to let moms know that it’s OK, sometimes things happen beyond our control and if you need to start supplementing the baby with a bottle or formula, it’s OK you haven’t failed as a mom. I guess I could have really used more emotional support from my nurses. But this was also 18 years ago so I’m sure training and support is a lot better now.”

Difficulties can start right away, and support in the early days is crucial. 

• “I had a lot of difficulty breastfeeding. I had to have a lot of help from the lactation people in the hospital. He couldn’t “find” and latch on to the nipple. And a few years later when my son had so much trouble swallowing a liquid from a sippy cup (it would just dribble out of his mouth until a friend advised me to thicken it with cornstarch.) And then he couldn’t transition from a sippy cup to regular cup – he could only drink from a straw for a long time. And he didn’t start talking until about his 3rd birthday. He’s 10 now & still gets speech therapy. For a long time now I’ve thought that the early difficulty with breastfeeding must be connected to all his oral motor difficulties since then.” 
• “My son had a tongue tie and that made it difficult at first. He was also a big baby and I struggled to meet his demand. Other moms were very surprised I kept at it after the tongue tie had caused so much pain. We made it to 13 months and he self-weaned. In those early months, he had a thing about sleeping, though. [He] hated for us to leave the room and hated to sleep alone. That was the most challenging in our case. Along with his autism, he is also a sweet, happy temperament and that was obvious as a baby. I did struggle to BF but also enjoyed the bond.”
• “A  lactation consultant that helped me tremendously. I did not live here at the time but I’ve heard from other moms that help isn’t as easy to access here. The downside to that was they then refused to ever take a bottle. Which now looking back, I’m sure had to be related to the ASD. I’m happy to share my experiences in order to help your advocacy group.”

Breastfeeding can be soothing for a child and can facilitate bonding for parent and child, but that bond may be more difficult to achieve.

• “Part of the issue I think was it was soothing and we had so few techniques that actually helped her calm.” 
• “She was a high-needs baby and very challenging to settle.”
• “My son nursed night and day, I think as a major soothing mechanism. (I have mostly positive feelings about that — it is really helpful to be able to soothe him that way.) He finally weaned when he was 2.5 while I was pregnant with his younger brother but didn’t sleep through the night until 4.5. Now at age 5, he still occasionally nurses — I’m still nursing his (typically developing) younger brother (who is not yet 2), so there is still milk available. Nursing remains a significant source of calm during his most challenging moments of overwhelming big feelings.”
• “My son nursed constantly until I started weaning at 2 years. I also found we didn’t share the connection and reciprocity during nursing that many parents of NT infants experience.”

Some parents of children with ASD find that weaning, and especially night weaning, is difficult and comes later than expected.

• “He nursed until he was 2 and nursed all the time – day and night. It made for tough nights but it was also so useful to soothe him. I had to wean him as another child was weeks from being born but it was tough. He also had trouble chewing and swallowing and gagged a lot more than my other children. I have no idea if that related to ASD since I wasn’t aware and didn’t have a diagnosis at the time. It would have been useful to have a resource about ASD and nursing and introducing foods etc. he still won’t eat food of certain textures colors and if they touch etc.”
• “Not being able to sleep without a nipple in her mouth so I tried night weaning (in arms). She screamed all night, night after night. Then we tried the no-cry sleep solution. That worked. But she continued to rely on nursing to cope with every feeling and I weaned her completely around her 4th birthday.” 
• “My child on the spectrum was so challenging to wean. She nursed until almost 3 and night nursed until over 2. I had to initiate every drop in the number of nursing sessions and the weaning. Because I was so touched out. She nursed frequently like a newborn well into her second year.” 
• “She also nursed all night long for.so.dang.long.”
• “I’m not saying that nursing to 3 is too long. Just that she showed absolutely no signs of dropping sessions or lessening frequency and I had to do all of that initiating. Versus my other child who gradually dropped feeds into favor of solids on their own.”
• “My daughter had difficulty weaning – she nursed until 2 and stopped once I became pregnant again. I believe she used it as a way to self soothe often, and needed it to fall asleep. Her aversion to many foods started very young and she had a limited diet, which I think was a factor in her hanging on for a while.”

Feeding difficulties can continue with the introduction of solid food, and parents may continue to worry about the child’s calorie intake and weight. For some, supplementation with formula or bottles of pumped milk is required. 

• “And she didn’t tolerate purées (I wish I had known about baby-led weaning) but she continued to nurse like a newborn baby until she was three years old.” 
• “Always sleepy from lack of nutrients. The formula was a lifesaver. My son has struggled with weight his whole life. And I do believe it all stems from his disabilities. He’s 18 now and he is 5’6” and weighs 87lbs. He gets tired of eating. The low muscle tone makes it hard for him to constantly chew his food. He’s on different high-calorie drinks throughout the day. I just know it’s going to be a constant struggle for the rest of his life.”
• “While my supply was fine, my son’s muscle tone was so low and he was so sleepy all of the time that he wasn’t getting any nutrition and was dropping weight at an alarming level. As soon as we started formula, he brightened and my mama’s instinct told me it was the right thing. He also needed the bottle nipples intended for much older babies as a newborn because his sucking muscles were so weak. Interestingly, I felt totally shamed by many women in my life, including 3-4 lactation consultants I worked with during that super short period. Our pediatrician was so reassuring about my decision and I remember an immediate change in my mood when I stopped. My son’s physical delays continue to be a hallmark of his autism and widely dismissed by providers but as we know, the diagnosis is really just an umbrella term for probably thousands of yet to be ID genetic disorders. Our amazingly attuned pediatrician in Boston(herself a nursing mom) said to me, “the reality of the benefits of breastfeeding are really only realized in the third world.” It definitely isn’t something that many people would like to hear or should hear when they’re struggling with nursing but it was exactly what I needed at that time and I really do think that my son would not have made it if we hadn’t had access to formula.”

Support that could be helpful

• Lack of sleep is normal
• Nursing more than others is normal
• Difficulty weaning is normal
• Wish I had known about baby led weaning and other feeding options
• Check out reddit and social media groups for support
• Work with a lactation consultant and a peer to peer support provider
• A group which aims to help autistic parents with specific issues they have that are related to breastfeeding as an autistic person

Beyond Breastfeeding

• This first link provides a general overview of a child’s right to various services as well as different programs and resources available in Durham.  This information is not specific to autism, but would include an autism diagnosis. Resource Guide for Parents and Families of Children with Special Health Care
• A recommended website is Autism Speaks. They have a wonderful informational “100 Day Kit for Young Children” which is helpful for parents with a child that is newly diagnosed with autism. 100 Day Kit for Young Children
• The National Autism Association has lots of great information and links and will send a Big Red Safety Box to families new to the organization. NAA’s Big Red Safety Boxes® Now Available!
• NC Help Line for Children & Youth with Special Health Care Needs (CYSHCN): A free service offering information and referrals for caregivers and professionals working with children and youth facing health challenges, including autism.
  • Helpline: 1-800-737-3028
  • Email: CYSHCN.Helpline@dhhs.nc.gov
• More information can be found on their CYSHCN Website and the Help Line Website.
• NC Help Line for Children & Youth with Special Health Care Needs: 1-800-737-3028 or Email: CYSHCN.Helpline@dhhs.nc.gov. The Help Line is a free service that provides information and referrals for caregivers and professionals who work with children and youth facing health challenges. These challenges may include chronic physical, developmental, behavioral, or emotional conditions.
• This organization is also a very good starting point and you can email any questions you might have. Find Help
• TEACCH (Teaching / Expanding / Appreciating / Collaborating / Cooperating / Holistic) is a great organization in Chapel Hill / Carrboro that provides “Parent-Child Training” classes. These classes are not free, but they have a Medicaid policy to help out with the cost. There is a waitlist, approximately 1 year, so try to sign up soon. This organization is also sponsoring a study about siblings of autistic children. TEACCH® Autism Program: Home
• You can find information and resources at the Duke Center for Autism and Brain Development. This may have a shorter waitlist than TEACCH. Duke Center for Autism and Brain Development |
• Call Alliance Behavioral Healthcare at 800-510-9132. Tell them you have a child recently diagnosed with autism and you would like to get on the waitlist for Medicaid waver services. It has an extensive waitlist (approximately 10 years), but vouchers may eventually become available.
• Durham Public Schools offers a Child Find / Preschool program. Contact Leslie Green for information and an assessment. 919-560-3933
• And lastly, there is a Developmental Pediatrician at Duke named Jeff Baker. He is working out of the Duke Peds / Southpoint office. He can provide wellness and autism checks. He is well connected and informed about the services available in Durham for autistic children.  Appt: 919-620-5333