Popular Topics of discussion
Issues with Sleep
The struggle that autistic children have both to fall asleep and to then stay asleep for long enough to get enough rest is a major issue that comes up in conversations on our Facebook group again and again.
Here are some tips that we give to carers:
Firstly, if you haven't already done so you can ask at the GP to be referred to paediatrician for melatonin, the sleep hormone that many autistic children lack. It does help my son to fall asleep.
It may be helpful to get a referral to an Occupational Therapist, who will do an assessment of your child and their environment, making recomendations of what to change to improve their quality of life.
Many autistics are hyper-sensitive, which means much more sensitive to their environment than the neuro-typical population. This means your child is extra sensitive to sensory stimulation. You may have to adjust your home to make the environment more suitable for your child's needs.
This may include:
Blackout curtains at the windows to block out light.
Avoiding bright or strip lighting
Painting walls in plain colours
Having minimal furniture and clutter in the home.
Here is a standard procedure to be tried each night:
Possible bedtime snacks that may aid sleep are milk, fromage frais yoghurt, turkey, wholemeal bread, cherry juice.
Turn off Television and other devices if possible at 18:00, as the blue light from devices is known to keep the brain active for longer. This is not always possible, depending on the child, so you can also download the flux app, which is timed to reduce blue light on devices at night time.
Reading with carer's support
A warm bath, without toys, for a short period. For relaxation, put in about 10 drops of Lavender oil.
Stay in the bedroom after the bath with some soothing music,
or audio stories.
Massage is also a relaxing aid to sleep and sensory regulation.
Keep lighting low and after a while turn it off.
The above steps may eventually become an effective strategy for sleep in those that are hyper-sensitive.
On the other hand I found that my son was hypo-sensitive. This meant that putting him in a dark quiet room at bedtime only made him anxious and upset, as he was sensory deprived. If the above steps do not work over a reasonable period of time, then a different strategy can be tried.
Realising this has been helpful in allowing my son to relax and eventually asleep. So I allow him to fall asleep in the living room where he is the most comfortable watching some quiet TV.
I now use the method recommended by Cerebra's sleep councillor, and let him sleep for 2 hours before gently waking him by sitting him up and supporting him under the arms, to help lead him into his bed. He then walks half-awake into his bed and falls back to sleep immediately. He sleeps much more using this method than he otherwise would. Its not full-proof, but much better than before.
Apparently adjusting the lights to different levels or even red light also works for some children for an hour or so before bed and through the night.
You could also try a weighed blanket until they fall asleep and then take it away, or white noise in the background.
If you haven't already got one, get a black out blind for the window too.
Here is a link to the Cerebra sleep service just in case you are interested.
The children's sleep charity also do some great workshops on this subject for families.
As part of our activities in the London Autism Group Charity we have recorded several podcast interviews. One such podcast episode focuses on sleep.
In the episode Chris and Kiran speak to Dr Georgia Pavlopoulou, an academic working with sleep experts and the autistic community in order to understand sleeping issues among people, autistic sibling well-being, mental health, participatory research approaches and more. Georgia works at University College London, in particular at the LiLAS Laboratory which is a lifespan learning and sleep laboratory run jointly by UCL and the Institute of Education.
The interview focuses upon the challenges that poor sleep pose to autistic people and their families, including the nature of these challenges, their consequences, what increases the risk of poor sleep, and advice on how to approach these issues.
Eating and Sensory issues
Every parent has the nurturing instinct to want their child to grow and have the best life possible. One of the very first interactions we have with our children as babies is in feeding them. This will lead to heart warming moments, memories, and fulfilment, as we see that our children are cared for and have their bodily needs met. So, when some children do not embrace food or the experience of eating, it is very stressful for parents to watch their child's needs, seeming to go unmet.
The issues around food and eating can be from multiple causes.
Sensory differences are common in autistic people. They can be a huge influence on the way autistic children and adults approach food. The senses can be heightened (or hyper-sensitive), causing foods with strong tastes and smells to be overwhelming. Or the senses may be diminished (hypo-sensitive) so that foods with less taste or smell or texture may be rejected.
Once this is determined, a parent can take the appropriate steps to try to improve the situation and to encourage a wider range of foods.
For hypo-sensitive people, a way to encourage them to enjoy food more, is to give them food that gives more sensory stimulation. Examples are strong tasting foods with big flavours. For instance: Sweet salad cream in sandwiches, baked beans, sweet chilli sauce, garlic in cooking, onion soup, fish, turkey(chicken too bland). Also foods with crunchy textures.
If people want plain foods then it is likely they are hyper-sensitive. If you think this is the case with your child, you can try to introduce small pieces of the more mild tasting fruit and veg for example. Chicken is another bland food that may appeal.
It’s quite important I think to have your child be able to trust you when offering foods and assisting with eating, so I have always avoided hiding or mixing in different foods. If they are sensitive to them they won’t eat them anyway and will be upset by being forced and so not want to experiment with new food in the future.
Other less well known senses may also be involved in issues around food. Interoception is the awareness we have of our interior senses. If this sense is not working properly then it may be why a child does not feel hungry or feels hungry all the time. They may not be able to sense whether their stomach is full or empty. This can lead to under or over-eating. Under-eating is of course dangerous in that the body is not getting the nutrients that it needs. Over-eating may play into the causes of constipation and other problems.
Here is Episode 9 of The Autism Podcast, which deals with the Sensory World. James speaks with Joanna Grace, the founder of The Sensory Projects, Sensory Engagement & Inclusion Specialist, TEDx speaker, trainer, and author. The Sensory Projects is a national and international project aimed at promoting inclusion through focusing on people whose primary experience of the world, and meaning within it, is sensory.
Why is my child's behaviour getting worse, aggressive or challenging?
This is such a complex subject that there is no easy answer, but here are some things to think about.
Firstly, all behaviour is a method of communication. It can be very difficult to express when we are having difficulty or even to understand what the difficulty is, especially at a young age. If there is something that causes us pain or anxiety, then we will try to avoid that situation.
Think of it as something being wrong in what your child is being asked to do. It might not be obvious to others, but there is a reason for what is happening.
It may be that the person is being made to go into an environment that causes them great sensory pain, such as a place like a supermarket, with strip lighting on the ceiling or with machinery (fridge or air conditioner) that emits a low hum, but may be painful for someone with heightened sensitivity.
You may be asking the autistic person to go into a social situation when that person is unable to be around people that they do not know well. This could trigger a fight or flight instinct, as the person seeks to avoid anxiety and stress.
When a child refuses to go to school, then it may not be for a simple reason. They may have had a traumatic encounter, with a teacher who does not understand autistic children, or have experienced bullying from another child.
Whatever it's source, there is a trigger event and then a behavioural response.
If the person's wishes are not respected, then the response will get bigger and more intense, hence more violent responses, until they get the result they want and the traumatic event is avoided.
If the person can communicate, then try to ask them what the reason is that they do not want to do something.
If they are not at that developmental level yet, and cannot communicate or understand the reason, then try to be aware that they are not doing this as a whim, and not being naughty etc.
They have a reason for being avoidant and carers may have to be a detective to try to work out why this is happening. You may have to avoid putting your child in certain situations, to avoid triggering their distress and the resulting violent response.
As a start, stop using the word 'no' to them. Using this sort of language to a neurodiverse person may trigger a response and escalate a situation. You want to de-escalate things, which will mean having a lot of patience and trying to understand the underlying reasons for what is happening.
Stress and anxiety can come from a multitude of sources. It is a question of tracking down the source of the problem and putting it right.
Even being in new situations and new places, and therefore not being in routine which can be anticipated, can be incredibly stressful.
Autistics need predictability and familiarity and routine to have a comfortable environment.
This is why autistic children are more likely to gravitate to familiar adults, but avoid other neuro-typical children. Children are a lot less easy for them to predict and are therefore more scary.