“After reading this and realizing that I'm not alone, I'm literally crying because I carried the burden of thinking that I did something wrong with my 4 year old daughter who is on the spectrum and will only have liquids. I tortured myself thinking I was a bad mom even though I've been doing everything possible … you have no idea how much you have all just helped me." – from Facebook comment thread on the launch of the Autism Speaks ATN/AIR-P Feeding Behaviors Tool Kit, 10 Jan 2014
Today’s “Food for Thought” response is by pediatric psychologist Jayne Bellando, co-author of the Autism Speaks ATN/AIR-P tool kit Exploring Feeding Behavior in Autism: A Parent’s Guide. Dr. Bellando practices within the Autism Speaks Autism Treatment Network (AS-ATN) at Arkansas Children’s Hospital and the University of Arkansas for Medical Sciences, in Little Rock.
In its first month, Autism Speaks’ new feeding guide has generated more than 10,000 Facebook “shares” and been downloaded from the Autism Speaks website more than 5,500 times. We knew this tool kit would be helpful. But we had little idea of how powerfully it would resonate with the autism community.
One of the most important messages you all have conveyed to us is the profound relief of knowing that you’re not the only family working on feeding issues. Clearly, there’s something powerful about knowing “I’m not alone!”
Why is this so important? And why do we urge you to go beyond reading our tool kit to connect with families and professionals who understand?
Feeding issues are hard. Feeding a child – or older loved one with autism-related eating issues – can be a daily challenge. Many of you tell us that it’s been among the most difficult aspects of your family life.
When you’re so focused on your child’s health – making sure he or she is getting adequate nutrition, trying to ease the anxiety around eating, finding ways to expand food choices – it can take over your life.
So many parents have told me “My other friends don’t understand.” And of course, there’s “My relatives tell me to just make him eat.” Even when advice is well intended, it can make you feel isolated when others can’t fathom your experience.
The importance of community support
And when we feel there’s no one with whom we can discuss our own anxieties, our thoughts can start spinning inside of our heads. Instead of constructively working through our challenges, we can become trapped in an endless worry- loop.
We’re pleased to see that the comment section of the feeding tool kit’s original Facebook post provided a wonderful forum for many of you. You’ve been offering each other support, suggestions and, sometimes, just a simple “I understand.”
Feeling part of a community, even if it is virtual, can help you feel less isolated and more understood. It can “normalize” your experiences around feeding issues. For some of you, it has even brought relief from guilt and the feeling that you had somehow failed your child.
We hope that each of you have at least one other person in your life that can be a support and sounding board around feeding issues. If you haven’t already, we also encourage you to reach out to members of your local autism community. This can be through your local “Walk Now for Autism Speaks” or through your region’s AS-ATN center. Perhaps you’ll even feel inspired to start your own support group using these and other ways to connect with other families.
Creating a long-term plan
Establishing a support group around autism-related feeding challenges is particularly important because eating behaviors can take a long time to change. Occasionally a child or even an adult on the spectrum will have a sudden breakthrough. Far more often, changes happen ever so gradually. Temporary setbacks are to be expected.
But while the long-term approach is the right one, it can take a toll on all those involved. Your support group becomes so important for helping you through the difficult times. And there will be times when you’re ready to make another person’s journey a bit easier.
Tapping your child’s medical and therapy team
Beyond emotional support and general tips, many of you will have specific and personal issues. That’s where you or your child’s medical and therapy team can help. Your child’s primary care provider should be at the center of this team and “medical home.”
At a specialty autism clinic – like those within the AS-ATN – you can find a range of professionals who can help you address eating issues and develop a feeding plan. Physicians with specialized training in this area include developmental behavioral pediatricians, gastroenterologists, and child psychiatrists. Many psychologists, speech therapists and occupational therapists likewise have training and experience in addressing feeding issues among children with developmental disorders such as autism. Teachers, school counselors and nurses can provide valuable input as well.
I hear from many parents that they feel hesitant to contact their child’s doctor or therapists about dinner table woes. “They are so busy!” or “They won’t remember us.” If this sounds familiar, I strongly encourage you to take a deep breath and call them anyway.
Members of your child’s treatment team might even be able to help you find other parents interested in forming a feeding support group. My experience is that when you start looking for resources and asking for help, something good will come of it. The perfect situation may not appear overnight, but you will have taken a courageous first step towards some long-term solutions.
And please let us know how you’re doing in the comment section below. Thanks and be well!
Need more help with issues around food, eating or special diets? Send them to FoodForThought@AutismSpeaks.org.
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