April 11th. Autism awareness month continues …
Feeding children is a thankless task for most mothers. During the toddler years many mothers express frustration at their child’s restricted dietary choices and fussy tendencies. Food and feeding issues come with the territory where Autism is concerned. Many children have sensory aversions with food – so that the smell, texture, consistency or even the colour of the food causes them offence and stress. Many children on the spectrum suffer from Gastro Oesophageal Reflux Disease (GORD) and a high proportion suffers from food sensitivities such as gluten, dairy, salicylate or amine sensitivities. Coupled with this, a high number of children on the spectrum also suffer from recurrent ear infections, often requiring grommets and adenoid removal procedures. As you can imagine, these things impact on eating, feeding. Children on the spectrum tend not to enjoy new experiences – food is no different. Feeding a child with ASD is an exhausting, lifelong issue.
I have consulted dieticians and nutritionists; I’ve sought Paediatric help and have explored Natural Therapies in an attempt to help James overcome his issues with food. You know what? It all just leaves you feeling like a failure as a parent. It is so patronising to have people constantly making all these suggestions about what they did with their (typical) children and how basically I need not to be permissive with James. Many times I have suggested that these people take James home and give it a good crack themselves if they’re up for the challenge! If I did what other parents sometimes do and just insist that he eat what’s on his plate or eat nothing at all, he would much prefer to starve and would simply just starve. His aversion is that strong. When he tries something new – even just placing it into his mouth and spitting it out – up to the point when the food is in his mouth the stress upon him is enormous. Often he is crying (even when he really wants to try it!) and once the food is in his mouth he is gagging, sometimes vomiting.
I have tried every diet (gluten free, casein free, salicylate friendly, dairy free); every fussy eater’s strategy; I’ve made every kind of recipe and I’ve thrown so much food away it’s almost sinful! Autism and food issues come hand in hand. James’ eating is the singular most frustrating and overwhelming aspect of his condition. If I could change one thing, this would be it!! But you know what? I can’t change it! No amount of advice, research or direction is going to help us completely overcome this issue. All I can do is what I am doing already which is monitor his iron levels; monitor his vitamin and mineral levels; monitor his general health; supplement where necessary; encourage him to eat as well as he can with the limited choices he has; offer him opportunities to extend his eating vocabulary; and praise him when he tries/accepts something new.
There are parents amongst my friendship circle who devote extraordinary amounts of time and energy into baking and preparing all their foods from scratch. The effort that goes into it is immense. Some parents believe that it’s important to heal the gut. Children on the spectrum are known to have entirely different ecosystems in the gut than the general population. They are vulnerable to antibiotics and are often sensitive to gluten and dairy, unable to properly digest the proteins in these products. There is no length these parents won’t go to in order to help their children. A great example of this occurred the other day when I was discussing almond milk on a forum I administer, and one of the mums said she makes hers from scratch! Can you imagine?
So next time you consider offering platitudes or “helpful” advice to an ASD parent about their children’s eating, perhaps instead you might consider just offering a sympathetic ear and just acknowledge how trying this must be. And don’t forget to remind them that they’re doing an excellent job under very trying circumstances. xxx