What life skills do autistic children need to be independent? What do you really need as a parent for your children to be able to do themselves? Can you be considered independent if you follow a beige diet?
For parents of young children (we’re not talking babies here, but young children), sleep, eating and toileting are three skills that occur every day. If one of them doesn’t work well for a neuro-typical child, it can cause huge stress and anxiety for a family. If all three life skills are underdeveloped, you’ve got exhausting, long days caring for your autistic child. Welcome to parenting children with autism zombie-land.
Life Skill #1 – sleep independently with autism
Sleep is incredibly important. Your brain needs it to remember what it’s learnt and to solve problems. Your body needs sleep to grow and heal muscles, bones and skin and fight sickness. Yet so many children with autism struggle with getting to sleep and staying asleep. A study of preschoolers in 2019 found that sleep problems are more than twice as common in children with autism. This study also reported that almost 80% of children with autism had disrupted sleep, compared to around 30% of neuro-typical children.
We sleep because when we have full and busy days our body is driven to sleep at the end of the day. Like an electric car with a full battery in the morning, and empty in the evening, your body needs to ‘re-charge’ overnight while you sleep.
Sunlight triggers you to wake up and switches off production of melatonin. Melatonin is a chemical made by the brain that makes you sleepy. However, low melatonin levels have been found in people with autism, possibly due to variations in the ASMT gene which encodes the last enzyme of melatonin synthesis.
Problems with sleep might also occur more frequently for autistic children because of sensory issues, difficulty with transitions, obsessions that interfere with relaxation, or high levels of anxiety.
Sleep hygiene
Sleep hygiene is similar for everyone.
- Make sure your bedroom is cool, dark and quiet. Most of the time this suits autistic sensory needs. However a night light might help alleviate anxiety around the dark. Similarly, relaxing music or white noise might be preferred to quiet. Our son finds that he needs background white noise (like the ceiling fan on) otherwise he gets distracted by his ears ringing.
- Exercise during the day. We use fitness watches to track steps and make sure our kids get 10,000 steps or at least an active hour.
- Go to bed at the same time every night. Schedules are great for the body, and we also use alarms on the watches to remind kids that it’s bedtime coming up.
- Don’t drink caffeine or use screens close to bed time.
- Have a bedtime routine. You can read about our sleep-time routines as well as our journey to independent sleeping as life skill #1.
Life Skill #2 – toilet independently with autism
Learning how to toilet independently is an important life skill and many neuro-typical children may successfully toilet train from 18 months old. However, reaching toileting as an independent life skill is often delayed for autistic children. In fact, children with autism are more likely to have incontinence compared to typically developing children of the same age.
Toileting as an activity relates to sensory stimulation and can be a loud (think hand dryers and the flush), smelly (goes without saying), visually unappealing and boring activity. This can make it challenging for children with autism for a number of reasons.
Towards independent toileting
- Have a toileting schedule for Timed Toileting. Give each time names like “morning wee” to make it official. Use a timer to to schedule toilet breaks at regular intervals rather than relying on interoception. Times might include on waking, after morning tea, after lunch, after school, before dinner, before bed.
- Make the toilet room engaging. Who wants to quit gaming to go to a boring tiny room? Sounds like a punishment. Put books, magazines or toys, in the bathroom. Give little rewards like a piece of sweet cereal if the toilet break was successful.
- Seek medical help. If you have continued troubles or suspect constipation, seek medical help. There may be underlying physical or medical issues. If not, at least that’s been ruled out.
- Talk it through. Use social stories or videos like Tom’s Toilet Triumph to talk through the steps. Put yourself in your child’s shoes and see if anything is a barrier. Is it too bright or loud? Do they not know how to pull their pants up or down? Do they know what it feels like inside when they need to go (interoception)? Draw pictures of what it feels like inside when they need to go. Talk about healthy toileting with a Bristol stool chart (aim for a 3-4) and a Urine Colour Chart (aim for a 1-3). These help educate your child on their body and how to look after it.
- Stay calm and keep toileting. Be positive and don’t make toilet time fearful, anxiety-inducing or about punishments. You can read about our toileting struggles as well as our journey to independent toileting as life skill #2.
Life Skill #3 – eat a healthy and varied diet with autism
Eating a balanced diet is important for health and nutrition. Healthy balanced diets help you from getting sick from many diseases such as heart disease, diabetes and cancer. A 2013 meta-analysis study found that children with autism experienced significantly more feeding problems. In fact, children with autism are more likely to refuse foods, have a limited repertoire of foods and have nutritional deficiencies.
Putting that into perspective, a recent study found that fewer than one in ten adults in Australia eat enough vegetables. While the Australian Healthy Eating Guidelines no longer specify a particular number of serves, they do place an emphasis on eating vegetables daily. So, eating a balanced diet is a common problem.
Beyond the beige food diet
Eating a balanced nutritional diet is trickier than it sounds. Texture, taste, smell and look are all potential sensory barriers to eating different foods. The consistent textures of packaged and processed food are often more comforting and safe than variable and colourful foods. Fruit and vegetables can be squishy, variable ripeness and sweetness, bitter in taste. But processed food is consistently crunchy, sweet, salty, fatty and tasty!
- Include kids in shopping, growing and preparing food. They say some kids need to be exposed to food 10+ times before they get used to it. Look at, touch, and smell foods to get exposed and desensitised to it. Although, they may just run away screaming “eww compost” like ours.
- Buffet-style family meals. Sit down and eat together with deconstructed meals. Put all the components of dinner on the table and allow kids to serve their own. For example, for spaghetti bolognese, put a the pot of pasta, pan of sauce and toppings separately on the table.
- Parents provide, kids decide. Alternatively, put a little bit of everything on a big plate (or a segmented plate). Follow the “parents provide, kids decide” saying. Parents decide what and when is put on the table, and kids decide what they will eat from it. Just hope the plate doesn’t get up-ended when something disliked is on it.
- Do the sneaky hide of vegetables. Process vegetables super finely and add to sauces, burger patties or chocolate cake. Hopefully the flavour and colour of the dish hides the taste of the vegetables. Alternatively, change the texture to crunchy by wrapping foods in puff pastry and baking, or covering in batter like tempura and frying.
- Keep trying and exposing new foods. Get take away, eat at different places that aren’t home. You never know what kids might be happy to eat at a friend’s house. You can read about our beige diet struggles as well as our journey to healthy eating as life skill #3.
References
Sharp, W.G., Berry, R.C., McCracken, C. et al. Feeding Problems and Nutrient Intake in Children with Autism Spectrum Disorders: A Meta-analysis and Comprehensive Review of the Literature. J Autism Dev Disord 43, 2159–2173 (2013). https://doi.org/10.1007/s10803-013-1771-5