Editor’s note: The following information is not meant to diagnose or treat and should not take the place of personal consultation, as appropriate, with a qualified healthcare professional and/or behavioral therapist.
Guest post by pediatrician and feeding-disorder specialist Marguerite Dunitz-Scheer. Dr. Dunitz-Scheer works for NoTube, an organisation specialising in helping families wean children from feeding tubes.
For a variety of medical or developmental reasons, the early or temporary use of a feeding tube is relatively common among young children who have autism. Tube feeding provides essential nutrition when your child is unable to chew or swallow safely.
Once an evaluation determines that your child can begin to safely drink and eat orally, the removal of the tube is in your child’s best for development and health.
Embarking on any tube-weaning program can feel daunting. The challenge may feel particularly great if your child has autism-related sensory and behavioral issues. Based on our years of experience in this field, here are a few things we feel are important for you to know when you begin this journey.
1. Will it be difficult?
We don’t need to tell you that raising a child with autistic has its challenges. No doubt, you’ve already faced and surmounted many hurdles. Weaning from tube feeding will take some effort and patience on your part. It would be unfair to pretend you can snap your fingers and your child will wean overnight. However with an experienced support team, you and your child can expect a positive experience and success. As a positive challenge, this task will help your child advance in development and independence.
2. Why is it important?
Understandably, it can be hard to break out of the routine use of a feeding tube. I can be easy to delay and avoid its removal. So why should you not delay? Feeding orally helps your child to develop both language and fine motor skills. Being able to eat and drink without a feeding tube is also important to your child’s social life – as well as that of your whole family.
Tube feeding can also worsen acid reflux and, occasionally, contributes to nutrient imbalances.
We also find weaning helps the whole family regain a sense of control over their lives, reduces the need for hospital visits and saves money. There is a huge feeling of satisfaction seeing your child enjoying a range of food and being able to ditch the tube feeding equipment.
So, yes, I would say that the sooner your child can be safely weaned from the tube, the better so long as there is no medical reason to continue.
3. Will my child have to be admitted to hospital and/or need more tests?
It used to be the case that weaning a child from a feeding tube included an in-patient program that lasted weeks or even months. Thankfully this is no longer the norm. In a few weeks, feeding specialists can work with your child on an out-patient basis while teaching you and other caregivers how to work with your child at home.
It’s not always necessary to have further testing done. However, some clinics will ask your child to undertake a swallowing assessment to ensure that it’s safe to leave the feeding tube behind. This may involve either having a fiberoptic camera inserted or swallowing a liquid that shows up on X-rays. Either of these tests can be inaccurate when a child is stressed or the physicians involved are not experienced with working with children. So we strongly recommend working with a healthcare team experienced with children – including those who have autism.
Our organization has a web-based program that even allows remote assessments that are followed by a team visit in your home for guidance and support. This is much less unsettling for your child, allows a much more individualized timing and duration and is easier for the whole family.
5. How can I help my child prepare?
As you no doubt know from experience, transitions can be difficult for children with autism. So calm, advance preparation is important. If possible this will include oral stimulation that includes exposure to good tastes.
Depending on your child’s age, abilities and developmental stage, you can also start talking about how great it will be to eat. I also encourage having your child sit down with you at mealtimes. Seeing you enjoying your meals can be a great example.
Involve your child in food preparation. Remember to make it fun. And take your child grocery shopping. Explore the wonderful colors and textures of the produce aisle – and the colourful packaging of prepared foods.
Have room for a garden in your backyard – or perhaps a nearby community garden? Growing fruits and vegetables is yet another great way to welcome your child to the world of eating.
6. Will my child really manage a balanced diet?
As readers of this advice column know well, a great many children with autism have highly selective or restricted diets. They can be highly sensitive to textures, smells and flavors. They may be very reluctant to try new foods or even usual foods if they are presented differently. It’s common for children with autism to prefer bland, starchy or crunchy foods – not the ideal basis for a balanced healthful diet.
Fortunately, autism-savvy feeding therapists and occupational therapists know how to introduce new foods – and can work with you on doing so at home with your child. When selecting a team to wean your child from a feeding tube, I highly recommend that you look for therapists who can offer this type of autism-specific feeding therapy.
Any kind of force-feeding will not help your child!
I recommend a highly individualized step by step approach that introduces different types of food slowly and gradually through family meal time, play therapy, attractive presentation and positive encouragement. This is the best way to help your child overcome reluctance and begin to enjoy a healthy, balanced diet.
Before this can happen, we want to ensure that your child’s tube feeds are reduced in a systematic and medically supervised that ensures his or her safety and well being. I firmly believe that this medical support should continue for a minimum a month after your child’s last tube feed.
The right time for tube weaning is “as early as possible and as late as necessary.” We would welcome further questions at www.notube.com. We will be glad to help!