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:
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Blackout curtains at the windows to block out light.
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Avoiding bright or strip lighting
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Painting walls in plain colours
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Having minimal furniture and clutter in the home.
Here is a standard procedure to be tried each night:
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Possible bedtime snacks that may aid sleep are milk, fromage frais yoghurt, turkey, wholemeal bread, cherry juice.
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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.
https://justgetflux.com/
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Reading with carer's support
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A warm bath, without toys, for a short period. For relaxation, put in a few drops of Lavender oil ( While this is one of the safest oils, always measure drops carefully and do not exceed 10 drops).
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Stay in the bedroom after the bath with some soothing music,
or audio stories.
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Massage is also a relaxing aid to sleep and sensory regulation.
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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.
The Importance of Sensory and Emotional Regulation
From a very early age a child will learn by experiencing the world through the senses. This could happen by using any of the 33 senses that the body possesses. Examples range from mouthing an object, to feel its shape and texture, to a child who will sniff everyone they meet, or want to touch everything new that they see.
Sensory play is a key factor in all childhood development. The repetition of sensory experiences develop our neural pathways and build the foundations of future learning for everyone.
You may notice your child flap their hands, rock back and forth, or spin. They may be engaged in an activity, feeling excitement or other strong emotions. This is a natural form of sensory self-regulation, in which an autistic person uses movement of the body to release energy caused from a sensory experience. It is also known as 'stimming' in the Autistic community.
Other forms of sensory regulation include pacing, spinning, jumping, fidgeting, foot tapping, chewing and more.
Allowing these behaviours at home, in schools and in the workplace, will let a neurodivergent person release built up stress, take a break, relax and improve the length of their ability to concentrate. Conversely, forcing a person to suppress their sensory behaviours will prevent them releasing stress and can lead to an escalation in the form of more unwanted behaviours. For example,
those that cause harm to themselves or others.
Suppressing natural autistic behaviour and attempting to mimic neurotypical behaviour is known as 'masking' in the autistic community. It is extremely stressful, exhausting, and bad for mental health. It can lead to 'burn out', when a person is totally drained of their physical and mental strength. A person may need long periods of time to recover from this state. Therefore it is not in the best interests of either autistic people, their schools or companies they work for, to perpetuate the causes of burnout. Rather, schools and companies need neurodiversity training to be able to offer support and understanding. In the long run, this would lead to much less lost time, incidents and sick leave. Studies show a marked improvement in academic results and in company productivity when neurodivergent people feel supported and valued.
Sensory engagement is an important part of special education and should be a major part of the curriculum in all SEND Schools. This could be in the form of exploring sensory stimuli in table-top trays, listening to and experiencing sensory stories, or through physical sensory activities such as bouncing on a large yoga ball or on a trampoline. Some schools have sensory rooms which are specially adapted environments to allow sensory learning.
Soft play areas are also incredibly helpful sensory environments that are inducive to physical development through sensory exploration.
Sensory activities should also be enabled and encouraged at home. SEND schools can enable parents and carers to help their child's development through outreach in this area.
For all neurodivergent people the senses offer vital pathways to learning, development and communication. This is particularly important for those who cannot communicate verbally, where sensory activities allow for alternative forms of education and self-expression. For example those with Profound and Multiple Learning Difficulties.
Given the importance of learning through the senses, the right to sensory activity should be a sacrosanct human right and a fundamental plank of Special Education and Autistic Rights.
London Autism Group Charity whole-heartedly supports the unanimous voices of Autistic-led advocacy across the globe, that call for a ban on harmful therapies attempting to force autistic people to adopt neurotypical behaviour or attempts to 'cure' autistic people of their natural coping mechanisms.
It is essential that sensory regulation be allowed by parents, carers and teachers. Some forms of so called 'therapy' attempt to supress the natural bodily need for sensory stimulation. Numerous Research studies and tens of thousands of first hand accounts from autistic people, have found that ABA and its predecessors, which attempt to force an autistic person into neuro-typical (non-autistic) forms of behaviour, are extremely harmful to mental health. They cause long term PTSD which then effects the person for the rest of their life.
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.
Some examples:
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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.
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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.
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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.
What is a meltdown or a shutdown?
When an autistic person is placed in an overwhelming situation, then they can go into an involuntary response to the crisis they are experiencing. When this happens, control of their body and behaviour can be lost. A person may scream to drown out an overwhelming sound, may loose control of their body or completely shut down as if asleep. These are the body's instinctive fight or flight defensive coping mechanisms.
A meltdown is often caused by a build up of many small stressful events over one or several days. Autistic people find security in predictable events that make them feel safe. With their control already wearing thin, it may just take a small change in the scheme of things to push them over the edge.
Here are some examples that could trigger such a crisis:
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Some autistic people are sensitive to sound, touch or certain visual stimuli.
A loud or bright environment can be very difficult and stressful to tolerate.
Being exposed to these can cause sensory overload, an intensely painful and exhausting experience.
Some wearable accessories can block sensory stimuli, which can help a person cope. Sun glasses will help negate visual stimuli and ear defenders are specially designed to dull sound.
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There could be an unplanned occurrence at school or at work. Unexpected change that puts someone out of their routine could be triggering and overwhelming for some. When changes are introduced to a work or school environment, it is the responsibility of teachers and work managers to let people know as much as possible about any planned changes ahead of time. This will limit stress, leading to greater attendance and productivity.
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Social communication can be very draining for autistic people, who often force themselves to mimic the neurotypical style of communication.
This can be exhausting, particularly when eye contact is given, which can be a very painful experience for autistics.
The larger the group in a social setting, then the harder an autistic person has to work in order to cope. Having to follow several conversations at once and being exposed to a room full of talking people can be overwhelming. An autistic person often cannot block out the sounds around them, but is overwhelmed by hearing everything at once.
It is important for people learn their own limits and not to push beyond them. It is helpful for autistics to feel comfortable and able to express when they have had enough. It helps to have caring friends who will understand if it becomes necessary to leave a social situation.
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Anxiety can also overwhelm an autistic person. In a social situation, for instance, a person can be upset and confused to such an extent that they are unable to form thoughts or words.
Further reading
What a meltdown feels like ( by Emma Dalmayne )