A practical and evolving guide offering support, insights, and resources for autistic individuals, parents, and caregivers to navigate autism and create a more inclusive environment.
“It’s OK to ask for help!”
DISCLAIMER:
This guide is provided for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. We strongly encourage readers to seek the guidance of qualified healthcare professionals for any medical concerns.
Additionally, while every effort has been made to ensure the accuracy of the information, the authors and publishers are not responsible for any errors or omissions, nor any consequences arising from the use of this material.
Please also note that terminology evolves over time. What is considered acceptable today may not be tomorrow. The terms used in this document were accurate at the time of editing and are not intended to cause any offence.
Welcome
Navigating the world of autism can be challenging for individuals and their families. This guide, “Neurodivergent Me,” is designed to provide practical support, insights, and resources to help you on this journey.
Whether you are an autistic individual, a parent, or a caregiver, this document offers valuable information on understanding autism, managing sensory issues, and accessing the right support.
Our goal is to foster a more inclusive and understanding environment where neurodivergent individuals can thrive.
We hope this guide serves as a helpful companion in your daily life and advocacy efforts. However, This guide will never be completed. It will evolve as we learn more about how to help and support neurodivergent individuals.
Lizeta Fellows and Lesley Higgs
This book was written to assist autistic individuals, as well as their parents, carers, and others who need support.
Sometimes the strength within isn’t a big fiery flame for all to see.
Sometimes, it’s just a tiny spark that whispers ever so softly ‘keep going,you got this!
55. Do you require an Education, Health and Care plan (EHCP)?
56. Benefits and additional financial support
58. Useful links & books
60. About us
What is neurodiversity?
What is Neurodiversity?
Neurodiversity is the concept that there are a variety of ways that people’s brains process information, function, and present behaviourally. Rather than thinking there is something wrong or problematic when some people don’t operate similarly to others, neurodiversity embraces all differences. The concept of neurodiversity recognises that both brain function and behavioural traits are simply indicators of how diverse the human population is.
Neurotypical is a descriptor that refers to someone who has the brain functions, behaviours, and processing considered standard or typical. Neurotypical people may have no idea they are because the subject has likely never come up for them before. These people usually hit all of their developmental and behavioural milestones at the same times and ages that are considered standard for most people. Once grown, they generally move through life without having to wonder if their brains function in the same way as others do.
Neurodivergence is the term for people whose brains function differently in one or more ways than is considered standard or typical. There are many different ways that neurodivergence manifests, ranging from very mild ways that most people would never notice to more obvious ways that lead to a person behaving differently than is standard in our society. We’ll examine the most common types of neurodivergence and the ways they manifest ahead.
Autism Spectrum disorder (ASD) is a clinical term, the community preferred use is Autism or Autistic.
Importance of inclusion
The neurodiversity movement has worked to change the way the world sees neurodivergent people. According to researchers, the neurodiverse community can see an improvement with neurodivergenceinformed therapies. These therapies can focus on a person’s ability rather than inability to perform tasks. This has been a major push of neurodiversity advocates.
Experts have long found neurodivergent children can thrive with appropriate support and inclusion. These can include behavioural therapy, occupational therapy, or speech therapy. Dr. Julia Barnes identified neurodiversity as a form of human diversity, saying, “Just like there’s no normal, correct or superior race, gender, ethnicity or culture, there’s no one normal, right or superior type of brain.”
Treatments, whether they be improving digital well-being, designing better opportunities for neurodivergent individuals to relate to neurotypical individuals in a work setting, or focusing technological research toward the neurodiverse, can go a long way in promoting inclusion and celebrating differences.
Summary
The neurodiversity movement has improved real-life scenarios for those with autism spectrum disorder, a mental disorder, sensory sensitivities, or learning disabilities. Everyone’s brain works differently, and recognizing the differences between someone who is neurodivergent and neurotypical, people can go a long way to improve lives and make the world a more inclusive place.
Source: Jeremy Brown, taken from Autism Parenting Magazine found here:
Facts
● 700,000* people are on the Autism spectrum, that’s one in 100 people in the U.K.
● Autism is lifelong. – Autistic children grow to be autistic adults.
● Autism can be a hidden disability – you can’t always spot it!
● While Autism is incurable, the right support at the right time can make an enormous difference.
● Without understanding and acceptance, Autistic people and their families are at risk of isolation and mental health issues.
● Boys have a higher diagnosis rate than girls, some girls find it easier to learn social behaviours and mask. The neurodivergent community feels this could be due to having a male biased diagnostic criteria, it could also be cultural expectations, genders of which there are many and general statements.
* population figures are constantly changing/ being updated.
Fiction
● People tend to ‘grow out’ of autism in adulthood – Myth. Autism is lifelong.
● Autism is a mental health problem – Myth. Autism is a developmental disability. It’s a difference in how your brain works. Autistic people can have good mental health, or experience mental health problems, just like anyone else.
● All autistic people are geniuses – Myth Just under half of all people with an autism diagnosis have a learning disability. Others have an IQ in the average to above average range. ‘Savant’ abilities like extraordinary memory are rare.*
● Everyone is a bit autistic – Myth. While everyone might recognise some autistic traits or behaviours in people they know, to be diagnosed autistic, a person must consistently display behaviours in accordance with the DSM IV TR, the diagnostic tool used by psychologists. Just having a fondness for routines, a good memory or being shy doesn’t make a person ‘a bit autistic’, for example: you cannot be a bit pregnant, you’re pregnant or you’re not.
● They can’t be autistic! They have imagination, they like to cuddle, they don’t LOOK autistic. – Myth. Every individual diagnosed as autistic does not have a LOOK, they have imagination and can indeed enjoy cuddles. There are many misconceptions about what autism looks like. Everyone presents differently and everyone is unique – autistic or not.
* the figures stated within this statement may differ, it’s important to note, savant and genius statements are rare.
What is the ND Profiling Tool?
The ND profiling tool is a visual document that assesses nine developmental strands of a child or young person aged 0-19. This includes speech and language, energy levels, attention skills, emotion regulation, sensory processing, flexibility and adaptability, and empathy.
It provides a holistic view of a child or young person’s needs and suggests types of strategies that can be put in place to help manage those needs in different areas of a life, such as at home, at their early years setting, school or college, and in the community.
The process of completing the profile is done with the family, and not for or to the family.
What are nature and nurture?
The term nature versus nurture highlights that humans are shaped by biological factors (nature) and environmental factors (nurture). Professionals work with parents and children and young people to discover whether certain behaviours are due to the way a person’s brain is wired (nature) or whether environmental factors play the main role or a mixture of both.
Environmental factors include other people surrounding the person, physical factors like diet and cognitive stimulation from socializing or through play. It can also include trauma, which is described as an adverse childhood experience, like domestic violence, sexual abuse
or a serious injury, which a child or young person might experience first-hand or witness. We know that these environmental factors have tremendous effects on a human being, especially during the formative years of childhood.
Nature can be described as biological factors, factors that people are born with or develop due to their biology. These include their genetics, the hormones that are secreted in their body and the way their body developed during puberty. Without medical interventions, these nature factors are very difficult to control or change in a person.
For example, why might a child have a high attention span? It could be due to an innate brain wiring (Nature), or it could be related a strong need to get everything right (perfectionism) learnt through the influence of parenting style or experience at school (Nurture).
Professionals investigate the observed behaviours, and use information from the persons past events, family and medical history to understand behaviour. However, the human mind being such a complex phenomenon, makes it difficult to explain with 100% certainty that factor A along with factor B was the cause of this behaviour. Importantly, things can go wrong, and misinterpretations can happen which can have damaging effects later in life; giving the wrong diagnosis or treating a child as a labelled condition can cause problematic behaviour in the future.
Or another way of putting it, mislabelling a child can cause a self-fulfilling prophecy, where the child who may not have had ADHD will start to behave as if they did. Professionals trained to work with children, work closely with parents, and think very hard to see if the behaviour that is on display is due to nature, nurture or a combination both. This is so everyone can be clear on right intervention to be made.
Why use the Neurodiversity pathway?
Research tells us that neurodevelopmental traits are indeed spread along a spectrum of difference in every case. Current diagnostic criteria simply set a somewhat subjective point on the spectrum, “above” which a child can be said to “have” a disorder, and below which it can be said they do not. One example of this is the Childhood Autism Rating Scale (CARS) assessment, where if a child scores above 30 points they will be diagnosed with autism, while if they score below 30 points they will not. This risks misleading people into believing that all who “have” the disorder are the same, and all who do not have the disorder are “normal” which causes confusion. This label of have or have not makes no mention of their social skills, their attention, and cognitive ability, instead it is condensed down into a “yes” or “no” which is not useful information when supporting the person. Pair this with the fact that those who are just below the threshold for a formal diagnosis, will still have support needs.
Some of the diagnostic tools used
Diagnostic tools including the DISCO (Diagnostic Interview for Social and Communication Disorders), the ADI-R (Autism Diagnostic Interview - Revised), the ADOS (Autism Diagnostic Observation Schedule) and 3Di (Developmental, Dimensional and Diagnostic Interview) are used to collect information in order to help to decide whether someone is on the autism spectrum or not.
The ADOS tool differs from the others as it is not based on developmental data and therefore only looks at current behaviour and skills.
The criteria form the basis for the diagnosis, but the individual clinician’s judgement is crucial.
Source: National Autistic Society. www.autism.org.uk/advice-and-guidance/ topics/diagnosis/diagnostic-criteria/ all-audiences
About demand avoidance and PDA
Written
by The PDA Society PDA Society statement on diagnostic terminology www.pdasociety.org.uk
Demand avoidance is a natural human trait, we all avoid demands to different degrees at different times. When demand avoidance is more significant there can be many possible reasons for this: it might occur around certain situations (e.g. at school or in the workplace, or with certain people); it might be rational (for instance, avoiding situations that are stressful or which lead to sensory or social overload); or it might be related to physical, mental health or other conditions. So PDA isn’t always the best explanation for more ‘extreme’ demand avoidance.
Pathological demand avoidance is all-encompassing and has some unique aspects that can help differentiate it. Firstly it relates to everyday demands, and includes things that people want to do as well as things they might rather not. With PDA, demands are often avoided simply because they are demands, and it’s this sense of expectation (be it from someone else or your own ‘inner voice’) that leads to a feeling of lack of control, anxiety and ultimately panic. In PDA, there can be a somewhat ‘irrational’ element to the avoidance, for instance the feeling of hunger may inexplicably stop someone
from being able to eat. Last but not least, PDA demand avoidance is also usually seen from a young age.
The word ‘profile’ is used because a combination of traits, or key features, commonly occur together. In PDA, demands are avoided using approaches that are ‘social’ in nature (e.g. distraction, procrastination, making excuses, physical incapacitation, withdrawal into fantasy). Social communication and interaction differences may not always be obvious at first. Intense mood swings and impulsivity are common; and many PDAers, though not all, appear comfortable in role play, pretence and fantasy, sometimes to an extreme extent. And with PDA, the ‘repetitive or restrictive interests’ from the autism diagnostic criteria is often focused more on people (real or fictional) than things.
In much of the academic literature and research, a strong ‘recognition factor’ around this cluster of traits is mentioned. It is also reported that, for some, PDA seems to make sense when nothing else has, and that the helpful approaches recommended for PDA work when other strategies have failed or made things worse.
PDA isn’t a standalone condition
Clinical practice and most of the research literature describe PDA as not being a ‘condition’ in its own right but a ‘constellation of traits’ within autism. A PDA profile, as we currently understand it, is one way in which autism may present, which may be different from what many people, including clinicians, currently think autism ‘looks like’. Nevertheless, on further investigation, you would expect to find the persistent difficulties with social communication and interaction, restricted or intense interests, and sensory differences from the diagnostic criteria for autism.
The PDA profile is also ‘dimensional’, meaning that it presents in different people in different ways – for instance, demand avoidance might be quite overt or it might present in a more internalised way, where demands may be resisted more quietly and difficulties are masked.
The PDA profile can, and should, be taken into consideration when undertaking autism assessments (please see Evidence for use of PDA Terminology and What
makes a good diagnostic assessment for a child with a PDA profile?). This is in accordance with NICE Guidelines, which list demand avoidance as a ‘sign and symptom’ of autism. Autism assessments should consider all the presenting strengths and challenges, including demand avoidance. The extent of, and reasons for, demand avoidance should be determined in collaboration with the individual and, in children’s services, their parents. It is important that alternative underlying causes of extreme demand avoidance are considered carefully, as overdiagnosis is as unhelpful as under-diagnosis.
When appropriate, a diagnosis of autism or ASD can be supplemented with the use of descriptive terms. Additional terminology such as ‘with a PDA profile’ or ‘with a demand avoidant profile’ are widely used. Using this type of clear signposting, under the umbrella diagnosis of autism, provides understanding around presentations that may otherwise be perplexing, and highlights the need for different approaches when providing support. Where demand avoidance occurs for other reasons, individuals should also have their needs
understood and explained, along with personalised recommendations.
Helpful approaches for PDA can be really useful regardless of the underlying causes for demand avoidance, but are essential to enable a PDA child or adult to thrive. Conventional approaches based on firm boundaries and the use of rewards/consequences/ praise, or the approaches commonly recommended for autism (such as routine and structure), are often ineffective and even counter-productive for a PDA profile. Low arousal approaches, which keep anxiety to a minimum and provide a sense of control, are good starting points when thinking about what works for PDA. A partnership based on trust, flexibility, collaboration, careful use of language and balancing of demands works best. PDA Adults’ suggestions for selfhelp, coping strategies and therapies are covered here.
In summary
There are a range of academic and clinical views on PDA and more clinically-based research, which incorporates the lived experience, is urgently needed. The PDA Society’s view is that the PDA profile, as we currently understand it, includes traits which by definition indicate autism, and that although there are behavioural similarities with other conditions, they can be distinguished. The profile is not viewed as a diagnosis in its own right, but can be identified during an autism assessment and, where appropriate, should be included as a clear signpost to the approaches that will be helpful. Clinically-based research and surveys to date point to the use of formulations such as ‘Autism with a PDA profile’ or ‘ASD with demand avoidant traits’ as being used in practice.
Autistic people have difficulties with interpreting both verbal and non-verbal language like gestures, social cues or tone of voice. Many have a very literal understanding of language, and think people always mean exactly what they say. They may find it difficult to use or understand:
● facial expressions
● tone of voice
● jokes and sarcasm
2. Body language
Repetitive behaviour and routines.
The world can seem a very unpredictable and confusing place to autistic people, who often prefer to have a daily routine so they can predict their day. They may want to always travel the same way to and from school or work, or eat exactly the same food for breakfast, lunch and dinner.
3. Highly focused interests
Many autistic people have intense and highly focused interests, often from a young age. These can change over time or be lifelong and can vary from art or music to trains or computers. An interest may sometimes be deemed unusual. For example, one autistic person collected rubbish and with encouragement, the person developed an interest in recycling and the environment.
4. Social interaction
Autistic people can often have difficulty ‘reading’ other people - recognising or understanding others’ feelings and intentions - and expressing their own emotions. This can make it very hard for them to navigate the social world. They may:
● inadvertently come across as blunt or insensitive
● seek out time alone when overloaded by social interaction
● not seek comfort from other people
● appear to behave ‘strangely’ or in a way thought to be socially inappropriate
● often may find it hard to form friendships. Some may want to interact with others but struggle to naturally go about it. This can cause depression and feelings of despair
● build unhealthy friendships
● mimic others and not always getting it right
● some autistic children may prefer to be friends with older children, younger children or adults
● when playing some autistic children may not understand the typical social rules with turn taking or gentle play in group activities. This can cause issues with making friends
5.
Sensory sensitivity
Autistic people may also experience over-or under-sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain. For example, they may find certain background sounds, which other people ignore or block out, unbearably loud or distracting. This can cause anxiety or even physical pain. Or they may be fascinated by lights or spinning objects.
“You can totally do this!”
What’s it like to have Asperger’s Syndrome?
If the neurotypical (NT) mind is a boat, my mind is a bike. NTs don’t get that.
They just think I run a mighty strange boat. They assume I’m in the water and have an engine and a rudder and occasionally jump over the side for a nice swim. They assess and judge me in terms of boats and, when I’m not boatlike, they assume there’s something wrong with my boat.
But, I’m a bike.
I’m not compatible with boat rules.
I steer with handlebars, use pedal power, and I don’t jump over the side because it’s a hard road I’ll land on. If they could be made to understand that I’m a bike, they would then see that all of my behaviour is logical - for a bike rider.
Then I could teach them about bikes. And they could teach me about boats.
Source: Alice Hewitt, tumblr who cites: a posting on aspergeradults.ca in 2008 (via theadoracleopatra).
*although Asperges has been removed from the diagnostic system, some people still identify with this diagnosis. ** the purpose of this poem is to highlight different thought processes.
Masking
Written by Kieran, The Autistic Advocate https://theautisticadvocate.com
Autistic Masking (camouflaging) and Autistic Burnout play such an enormous role in the life of Autistic children and Autistic adults, yet despite being two of the most important aspects of an Autistic person’s life they remain largely misunderstood.
Both these areas have naturally, over time become my areas of real specialism and interest. My work in these areas includes articles, published academic papers, academic research, videos, interviews and training.
In order to best support Professionals, parents and Autistic people – I’ve pulled together all my work, free and paid-for, on Autistic Masking and Autistic Burnout in one place. I’ve also signposted to important and relevant work on Autistic Masking and Autistic Burnout from other people in various formats.
What is Autistic Masking?
There is a misconception that Autistic Masking is about ‘fitting in’ or wanting to appear to be more nonAutistic (Neurotypical). That implies that conscious choices are being made to Mask, which further implies that it is a deceit. Even the names that are used:
masking, camouflaging, assimilating all imply that notion. There is also a misconception that Autistic Masking is a series of social strategies, used by Autistic people to navigate social situations. Things that are picked up, used and then discarded. It is so much more complicated than that though.
Our understanding of Autistic Masking needs to be reframed, because Autistic Masking is a trauma response to stigma, invalidation and marginalisation.
Autistic Masking goes well beyond the normalised changes in behaviour that all humans engage in when they are around different groups of people with different social expectations, or even those times in life when you feel unwell, unhappy or unsafe for brief periods and have to cover it up
Masking is non-specific to Autistic people; groups who are marginalised and stigmatised in various ways have a tendency to respond in various ways, some similar to Autistic Masking, some specific to those groups. For a very long time terms like ‘passing’, ‘the closet’, ‘concealment’ and so on. All of those responses are a version of Masking, specific to that group in terms of the mechanisms and the reasons for their Mask to exist.
Autistic Masking is an action specific to Autistic people.
Autistic Masking is a psychological safety mechanism made up of complex layers of physical, emotional and social actions which an Autistic person is driven to use to self-protect and project an acceptable version of who they are
This can occur by applying, in fluctuating degrees, often un-contextualised and sometimes rehearsed learnt behaviours to appropriate situations; whilst simultaneously suppress both natural behaviours, selfidentity and reaction to the sensory environment. This can look like being the quiet, ‘shy’ one, the people pleaser; or conversely the projection of an exaggerated identity such as the ‘class clown’, or the ‘naughty child’, feeding the confirmation bias of those around them, giving them what they want and expect to see.
All this occurs developmentally, partly consciously initially, with the person in early childhood quickly learning to mostly dissociate from the act; and from then on unconsciously: pre-emptive, reactive and unplanned; And all at great mental and physical cost.
To break that down, what this means is that an Autistic child
quickly learns that who they are is not who other people want us to be. From very early on we are stigmatised, pathologised and (wittingly and unwittingly) punished for how we think, feel, communicate, move, behave, interpret sensory information, develop, play, even down to how and what we eat. Every aspect of being Autistic is invalidated by the world around us and often directly to our faces.
The notion of what I term ‘Projecting Acceptability’, developed out of exploring the fawning and people pleasing aspects of Masking, take us beyond the limited and superficial paradigm that suggests that Masking is always about concealment and ‘fitting in. Projecting Acceptability incorporates a much larger range of behaviours that might not previously have been considered under the Masking narrative, that recognises that Masking is actually about protecting oneself by giving others what they want and expect to see.
As Autistic people we quickly learn that in order to not be excluded, marginalised, invalidated and ill-treated further than we already are, we have to be ‘acceptable’ and project a personality that lives up to others expectations of us and which
gives them comfort. Often comfort for the observer comes in the form of showing other people what they expect to see, fulfilling their confirmation bias, so that we are predictable for them; This in turn also makes other’s behaviour predictable to us. There is safety in predictability for Autistic people: even if what we experience is negative, it is safer to expect to be be treated negatively and for that negative treatment to occur, than it is to not know how we will be treated and for it potentially to be worse.
Sometimes that projection of acceptability looks like the traditional expectations of Masking, it might look like acting Neurotypically. Sometimes too though it means appearing ‘more Autistic’ (that can differ depending on the other person’s thoughts on what Autism looks like – usually behaviourally based), or showing ‘challenging behaviour’. The notion of what I term ‘Projecting Acceptability’, developed out of looking at Fawn responses, takes us beyond the misconstrued and limited paradigm that suggests that Masking is only really about concealing and looking like you ‘fit in’, when actually it incorporates a much larger range of behaviours that might not previously been
considered, that encapsulate you giving to others that which others expect of you
Autistic Masking is trauma based and is directly related to stigma. It is not a series of social strategies and is vastly misunderstood by both the general population and professional services such as Education, Health and Mental health. The Mask becomes a near permanent projection and uses up an enormous amount of energy to sustain itself. It causes schisms in an Autistic person’s identity and research is now showing that Autistic Masking has direct links to the poor mental health outcomes in the Autistic community:- the high rates of self-harm, the high suicide rate, the early average range of death.
A form of self-protection that in the long term kills us.
Processing everyday sensory information can be difficult for autistic people. Any of their senses may be over- or under-sensitive, or both, at different times. These sensory differences can affect how they feel and act and can have a profound effect on a person’s life.
Too much information
Sometimes an autistic person may behave in a way that you wouldn’t immediately link to sensory differences. A person who finds it difficult to process everyday sensory information can experience sensory overload, or information overload. Too much information can cause stress, anxiety, and possibly physical pain. This can result in withdrawal, distressed behaviour or meltdowns.
If someone is having a meltdown, or not responding, don’t judge them. There are things that you can do to help. This can make a world of difference to autistic people and their families. Often, small changes to the environment can make a difference. Creating a sensory profile may help you to work out what changes are needed.
Three points to remember are:
● be aware. Look at the environment to see if it is creating difficulties. Can you change anything?
● be creative. Think of some positive sensory experiences
● be prepared. Tell the person about possible sensory stimuli they may experience in different environments
For some autistic individuals the feel of an item can either be tolerable or extremely intolerable. This does not always need to be on their hands either, it can be textures in the mouth, on the skin, the feel of a hairbrush or a haircut can physically cause pain. A shower can also often be painful. It’s worth bearing this in mind for any sensory issues that may arise.
Everyone’s sensory checklist will be unique to each individual. Create one that works for them, here are a few ideas to get you started...
● When clothes shopping be aware of materials –Are jeans scratchy for example?
● Do they prefer to wear tight underwear or loose without seams?
● Do clothing labels irritate them – if so cut them out.
● Sensory is not only sensitive to sound or light, but it also affects all aspects of the senses and the body.
● Some may find smells completely overwhelming.
● Trimming finger and toenails can be a very triggering experience. It could be the sound of the nail when cutting, it could be the feel of the nail clippers touching the skin, it can be how their fingertips and toes feel afterwards. Do they need to have them filed afterwards so that they do not catch on materials?
● Would a bath be a better option rather than a shower that could potentially cause pain as the water cascades onto their body?
● Are the towels and face cloths rough or smooth? Do they smell of washing powder? Is the soap/shower gel strong smelling? Do they require different smells or fragrance free? Towels dried outside are rougher on the skin.
● Toothpaste can be strong and create feelings of burning or soreness, the smell of toothpaste can overwhelm the senses, do they need non flavoured toothpaste?
● Eating out comes with lots of different smells that can be overwhelming to the senses, lots of people around can be overwhelming. Being expected to behave in a certain way – social cues can make eating out an impossible situation. Is the lighting, right? is it too cold? too warm? too noisy?
This list is not exhaustive, but all questions that are worth exploring for a person with sensory differences.
● Too many choices for what to eat. Does the child need to hide under the table until the food arrives? If you choose to eat out bear these things in mind as they can make this experience extremely stressful for the child and not enjoyable at all.
● Are you going to a market? Walking through a shopping centre? To assist with overloading the senses it can sometimes help to have one of your child’s ‘safe’ smells on their coat or collar of clothing to reduce the smells that are surrounding them.
● Sound, the volume may be very high to listen to but may find other sounds too loud – for example a fan on an oven, fridge in a supermarket, hand dryer.
Sensory differences
Over the next few pages we look at some of the effects of hypersensitivity or hyposensitivity to sights, sounds, smells, tastes, touch, balance and body awareness, and ways you could help.
SIGHT
UNDER-SENSITIVE
● Objects appear quite dark, or lose some of their features
● Central vision is blurred but peripheral vision quite sharp
● A central object is magnified but things on the periphery are blurred
● Poor depth perception, difficulties with throwing and catching, clumsiness
OVER-SENSITIVE
● Distorted vision - objects and bright lights can appear to jump around
● Images may fragment
● Easier and more pleasurable to focus on a detail rather than the whole object
● Has difficulty getting to sleep as sensitive to the light
You could help by:
Making changes to the environment, such as reducing fluorescent lighting, providing sunglasses, using blackout curtains and/or creating a workstation in the classroom - a space or desk with high walls or divides on both sides to block out visual distractions.
“Do you hear noise in your head? It pounds and screeches. Like a train rumbling through your ears.”
- Powell, J., in Gillingham, G. (1995), page 41
SOUND
UNDER-SENSITIVE
● May only hear sounds in one ear, the other ear having only partial hearing or none at all
● May not acknowledge particular sounds
● Might enjoy crowded, noisy places or bang doors and objects
You could help by:
Using visual supports to back up verbal information and ensuring that other people are aware of the undersensitivity so that they can communicate effectively. To meet the person’s individual sensory need, include experiences they enjoy in their daily timetable.
OVER-SENSITIVE
● Noise can be magnified, and sounds become distorted and muddled
● May be able to hear conversations in the distance
● Inability to cut out sounds – notably background noise - leading to difficulties concentrating
You could help by:
Shutting doors and windows to reduce external sounds. Preparing the person before going to noisy or crowded places, and providing ear plugs and music to listen to.
Creating a screened workstation in the classroom or office, positioning the person away from doors and windows.
TASTE
SMELL
UNDER-SENSITIVE
● Some people have no sense of smell and fail to notice extreme odours (this can include their own body odour)
● Some people may lick things to get a better sense of what they are
You could help by:
Creating a routine around regular washing and using strong-smelling products to distract people from inappropriate strong-smelling stimuli (like faeces).
OVER-SENSITIVE
● Smells can be intense and overpowering. This can cause toileting problems
● Dislikes people with distinctive perfumes, shampoos, etc.
You could help by:
Using unscented detergents or shampoos, avoiding wearing perfume, and making the environment as fragrance-free as possible.
UNDER-SENSITIVE
● Likes very spicy foods
● Eats or mouths non-edible items such as stones, dirt, soil, grass, metal, faeces. This is known as pica.
OVER-SENSITIVE
● Finds some flavours and foods too strong and overpowering because of very sensitive taste buds or has a restricted diet
● Certain textures cause discomfort - may only eat smooth foods like mashed potatoes or ice-cream.
You could help by:
Some autistic people may limit themselves to bland foods or crave very strong-tasting food. As long as someone has some dietary variety, this isn’t necessarily a problem. Find out more about overeating and restricted diets.
“Smells like dogs, cats, deodorant and aftershave lotion are so strong to me I can’t stand it, and perfume drives me nuts.”
- Gillingham, G. (1995), page 60
TOUCH
UNDER-SENSITIVE
● Holds others tightly - needs to do so before there is a sensation of having applied any pressure
● Has a high pain threshold
● May be unable to feel food in the mouth
● May self-harm
● Enjoys heavy objects (e.g. weighted blankets) on top of them
● Smears faeces as enjoys the texture
● Chews on everything, including clothing and inedible objects
You could help by:
For smearing, offering alternatives to handle with similar textures, such as jelly, or cornflour and water. For chewing, offering latex-free tubes, straws or hard sweets (chill in the fridge).
OVER-SENSITIVE
● Touch can be painful and uncomfortable - people may not like to be touched and this can affect their relationships with others
● Dislikes having anything on hands or feet
● Difficulties brushing and washing hair because head is sensitive
● May find many food textures uncomfortable
● Only tolerates certain types of clothing or textures You could help by:
● Warning the person if you are about to touch themalways approach them from the front
● Remembering that a hug may be painful rather than comforting
● Changing the texture of food (e.g. purée it)
● Slowly introducing different textures around the person’s mouth, such as a flannel, a toothbrush and some different foods
● Gradually introducing different textures to touch, e.g. have a box of materials available
● Allowing a person to complete activities themselves (e.g. hair brushing and washing) so that they can do what is comfortable for them
● Turning clothes inside out so there is no seam, removing any tags or labels
● Allowing the person to wear clothes they’re comfortable in
BALANCE
UNDER-SENSITIVE
● A need to rock, swing or spin to get some sensory input
You could help by:
Encouraging activities that help to develop the vestibular system. This could include using rocking horses, swings, roundabouts, seesaws, catching a ball or practising walking smoothly up steps or curbs.
OVER-SENSITIVE
● Difficulties with activities like sport, where we need to control our movements
● Difficulties stopping quickly or during an activity
● Car sickness
● Difficulties with activities where the head is not upright, or feet are off the ground
You could help by:
Breaking down activities into small, more easily manageable steps and using visual cues such as a finish line.
“Every time I am touched it hurts; it feels like fire running through my body.”
- Gillingham, G. (1995), page 3
BODY AWARENESS (proprioception)
Our body awareness system tells us where our bodies are in space, and how different body parts are moving.
UNDER-SENSITIVE
● Stands too close to others, because they cannot measure their proximity to other people and judge personal space
● Finds it hard to navigate rooms and avoid obstructions
● May bump into people. You could help by:
● Positioning furniture around the edge of a room to make navigation easier
● Using weighted blankets to provide deep pressure
● Putting coloured tape on the floor to indicate boundaries
● Using the ‘arm’s-length rule’ to judge personal space - this means standing an arm’s length away from other people
OVER-SENSITIVE
● Difficulties with fine motor skills, e.g. manipulating small objects like buttons or shoelaces
● Moves whole body to look at something.
You could help by: offering ‘fine motor’ activities like lacing boards.
Synaesthesia is a rare condition experienced by some autistic people. An experience goes in through one sensory system and out through another. So, a person might hear a sound but experience it as a colour. In other words, they will ‘hear’ the colour blue.
Synaesthesia Interoception
Interoception is an internal sensory system in which the physical and emotional states of the person are consciously or unconsciously noticed, recognised and responded to.
For example:
a person notices their stomach is rumbling and they have a pulling sensation in their abdomen they recognise this as signalling hunger they respond by eating something
Interoception skills are required for a range of basic and more advanced functions, such as knowing when to go to the toilet or being aware that you are becoming angry or upset.
Regardless of age, the development of interoception can slow down or even stop for autistic people. It is not known why this happens, although it may be due to a selfprotection mechanism associated with trauma. Many autistic people experience trauma, and this may halt or lower their interoceptive awareness.
We use a range of support in our schools and adult services one of these is Positive behaviour support (PBS).
PBS is a widely used and personcentred approach to identifying and meeting a person’s support needs, in particular if someone is distressed and at risk of harming themselves or others. PBS is most commonly used to support people with learning disabilities, some of whom may also be autistic. Practitioners should follow the PBS Framework, which sets out how to deliver good quality support.
PBS is based on working with the individual and their support network to understand why someone is distressed, the impact their environment has on them, and the best ways to keep them safe and happy. For instance, if someone becomes distressed during unstructured times, the professional would work with them to develop a personalised schedule of activities, helping them to choose how to spend their time. This would reduce anxiety created by unstructured time.
PBS is just one approach the National Autistic Society uses to support some people in our schools and services. This is alongside other support strategies and interventions, as advised by speech and language therapists, occupational therapists and psychologists, in consultation with the individual and their support networks.
There isn’t one single form of support that works for autistic children and adults, because people have different and varying needs. In deciding what types of support to offer, we always follow the best available evidence as well as latest guidance and advice from governments and regulators, and continually evaluate what we do.
For the complete Framework email: Pbsacademy@org.co.uk
Source: autism.org.uk national autistic society
Stimming
Do you often find yourself tapping your fingers on your desk, twirling your hair, bouncing your foot or humming to yourself? These are just a few examples of stimming.
The word stimming, or to stim, is a shortened way of saying ‘selfstimulatory behaviour’. This is because the actions we do or sounds we make when stimming, all stimulate our senses in some way. We sometimes don’t even realise we are doing it.
Some people often eat for the stimulation from crunching, chewing or sucking. Are you someone who reaches for a bag of crisps to crunch on, even when you’re not actually hungry?
But why do we do it?
Excitement and joy
When we stim, we get sensory feedback; we repeat the movement, the sound or the action because it feels good to us.
Anxiety
Stimming can give us a sense of control over our bodies when we are scared or worried. The repetitive actions or sounds can be calming and soothing.
Sensory overload
We can stim to help us focus on one sensation and try to block out the other sensory input from our environment. For example, we might listen to our own music using headphones in a public place to block out all of the other sensory overwhelm: bright lights, smells, sounds and people. By listening to our own loud music we are focussing on the vibrations in our ears and the effect grounds us in the moment and helps us feel calm.
Concentration
Stimming by keeping your mouth or hands busy can help you concentrate. Sometimes when people have chewing gum, it isn’t to enjoy the taste, but because the repetitive of chewing is quite calming. Also using something like putty (there is special putty made for stimming called Therapy Putty) or a fidget tool can help you listen better in a classroom.
Everyone on the planet stims. All of the above examples of stimming are things most people do. But because of our sensory differences, it is common for autistic people to stim in different ways to non-autistic people. For example, we may need more movement to be able to feel calm, or we may need to have more access to things to focus on to avoid sensory overload. It can be hard for non-autistic people to understand why we need these things when they don’t, but their brains work a little differently.
Should stimming ever be stopped?
Stimming does not need to be stopped unless it is harmful. If a stim is painful, finding alternative ways to feel the same sensory input in a safe way is really helpful. For example, if banging or hitting your head is a stim, a safer option could be to use something softer like a pillow to hit yourself with. There are a variety of tools/ techniques you can use to stim in a safe and positive way. Read more in the sensory smart section of our website.
When told to stop stimming, it removes our way of feeling calm or regulated, and drawing attention to our stims can make us feel embarrassed or like we have done something wrong.
It also uses more energy to focus on not doing it! All our thoughts turn to ‘I must not do it’ instead of the thing that needs our attention. This can be so draining!
Writing led by Claire Lowen, Changemaker and LGBT Lead, Spectrum Gaming
Written by Amy Adams AuDHD Counsellor and Founder of Finding Autism https://reframingautism.org.au
Monotropism, which is a common experience for many Autistics and ADHDers, is a term used to describe a thinking and processing style that utilizes a deep attentional focus on a few things at once that are intrinsically motivating or interesting, as opposed to a polytropic experience of attention that allows a person to focus on a broader range of things, though less deeply.
https://theautisticadvocate.com/ onlinelearning/
Monotropism is a theory introduced by Dinah Murray, Mike Lesser, and Wenn Lawson in 2005. According to the theory, Autistic people tend to have monotropic minds, whereas most people have polytropic minds. People with polytropic minds can easily attend to several activities, pieces of information, or issues at any given point in time. A polytropic brain can flexibly shift their attention across multiple pieces of input (including sensory input), without being overcome with any single thing that enters their awareness.
Conversely, a monotropic brain thrives when it can process one channel of input at a time. Distributing our attention across multiple sources of input might take immense effort or feel unnatural. Whatever we are focused on tends to draw our attention in intensely, leaving fewer cognitive resources for whatever lies outside of our focus tunnel.
What does this have to do with my sensory processing differences?
Well, I feel that this theory explains my sensory experiences well.
My monotropic brain prefers intense focus on relatively few things at any given point in time, giving me fewer mental resources to deal with ‘outside input’.
By outside input, I mean anything that attempts to pull my attention away from the object/subject of my focus. Outside input can therefore be experienced as intrusive if it captures my attention and I am unable to tune it out.
Let me provide an example. A few years back, I was sitting a university exam for my psychology degree. I was in this intense state of hyper-focus, writing my answers and feeling good about the flow state I entered. Then, the person sitting the exam next to me started tapping their pencil on the desk. My attention was torn away from my writing and shifted entirely to the sound and peripheral vision of the pencil tapping. This attention shift was involuntary; I could not find a way to block out the sensory input. It was distressing to have my attention so focused on something that I did not even want to be attending to at all.
This is how the theory of monotropism explains my sensory sensitivities and associated overwhelm. It is a combination of:
The discomfort of my attention being drawn away from where it wants to be;
A tendency to experience something intensely when it does enter my awareness; and
This whole process being beyond my control.
I cannot simply adjust to the new input and filter it out as irrelevant or unthreatening. Until the input stops or I find a way to block it out, I am overcome by it. It is the intensity with which I experience unwanted sensory input that causes me pain and anxiety.
There is a sense of my consciousness being ‘hijacked’ when certain sensory triggers enter my awareness.
For example, think about a smoke detector going off and you cannot get it to stop. During that experience, you may not be able to think of anything else. The sensory input is so intense that you cannot simply ignore it and go
back to what you were doing. This is how I experience certain types of sensory input that most people wouldn’t even register as there, or bothersome, in the first place.
It’s worth noting that my responses to sensory input are context specific.
The level of sensory anxiety or overwhelm I experience is very much dependent on the environment, what I am doing, who I am around, and my emotional state at the time.
That sense of being ‘hi-jacked’ by unwanted input tends to happen when I am focused, or trying to focus, on something important to me. It also happens when my base-line level of stress is high, for example.
Using this understanding of my sensory processing as something dynamic helped me to incorporate strategies that make life easier. For instance, I choose quiet, solo environments to do work or tasks requiring focus. I incorporate sensory blockers such as headphones, earplugs, and sunglasses to minimise unwanted input.
https://shorturl.at/lOXnW
Alexithymia
What is alexithymia?
Alexithymia is a Greek word that literally translates as “no words for feelings”, and means difficulty with understanding and/or describing your feelings and emotions. This can sometimes make it harder to understand other people’s feelings too. Autistic people are more likely to experience alexithymia.
Signs of alexithymia
If you don’t know what to say when people ask “How are you?”, that can be a sign of alexithymia. Some autistic people can notice and understand their own emotions well, but just can’t find the right words to explain them to someone else. Feelings are complicated and we don’t necessarily experience just one at a time. A word like ‘sad’ or ‘happy’ might not feel enough to describe your emotions, or just not fit your experience. If this is you, it might be that taking a bit more time to think will allow you to compare your feelings to something else, or describe in a more abstract way like ‘I feel like I have surges of electricity rushing through me’ or ‘I’m all fuzzy and floaty’.
Other signs can be not realising you are upset about something until you are really upset, not knowing why you have got upset, or if other people don’t realise when you are unhappy or in pain. For some people, feelings can be so big that they are too overwhelming, while for others, feelings might be so small that they are hard to notice.
Alexithymia can also mean showing your feelings in different ways than people might expect – for example your face might get less expressive the more emotional you are, or you might get really quiet and then suddenly start shouting or burst into tears.
Alexithymia can be challenging, because if you’re not sure how you are feeling or why you feel a certain way, you can’t do anything about it. Both positive and negative emotions can be important for making decisions, as it can be harder to make choices if you don’t know how you feel about them.
What causes alexithymia?
Alexithymia in autistic people is partly due to sensory differences, especially a sense called interoception. This is the sense of what is going on inside your body. It includes things like knowing when you are hungry, thirsty or need to go to the toilet, as well as emotions. All of these sensations can be harder to spot if you have a lower sensitivity to your internal senses.
In addition, as autistic people, our emotional reactions can be different to people around us. So we might be bothered by things that other people enjoy, or other people might stop us doing things that make us feel happy. For example, other people might tell us something is ‘fun’ when actually we are feeling very anxious. Because we learn about emotions by others noticing, identifying and responding to our emotions, this can end up making us confused about our feelings.
Alexithymia can get better with practice. Sometimes just having more time to process emotions can help. Everyone deals with emotions in different ways, so experiment and find what works for you. Some ideas are: talking to someone, writing, creating art, exercising or listening to music.
Another tip is to look at a feelings wheel. These can help you to find the right emotion words. Reading fiction may also be helpful, as authors will often describe the character’s feelings from the inside. People around you can also support you with noticing, naming and dealing with your emotions.
Alexithymia makes it difficult to communicate how you feel, but with practice and support from others, it can get easier over time.
A Collaboration between: Zoe Williams, autistic parent and writer, and Bobbie Gilham, Neurodivergent Parent of Autistic Teenager, Admin at Spectrum Gaming
Try non-mint toothpaste flavours and non-foaming toothpastes. For example, Orajel toddler training toothpaste doesn’t foam, and Toms of Maine, Burts Bees, and Tasty Paste makes toothpaste in flavours from strawberry to chocolate. Talk to your dentist about the use of fluoride on your child’s teeth.
Can autistic kids brush their teeth?
For some children, brushing teeth can be difficult. The sensation can be uncomfortable at first, and the child may need to be desensitized. You may want to start by using the toothbrush to touch your child’s lips or just inside their mouth.
As a parent of an autistic child the simplest of tasks can be a serious challenge. Teeth brushing is often one of the most common, as autistic children can be hypersensitive, they feel things differently to neurotypical children. Taste, smells and textures can be overwhelming and lead to meltdowns, often unexpected and severe.
We talk to a lot of frustrated parents who cannot make tooth brushing a positive experience, some even going so far as to having to restrain
their child in the name of dental hygiene. (Restraining is never recommended as it provides a negative experience)
While many children may avoid tooth brushing in favour of other activities, autistic children may dislike brushing their teeth due to oral sensitivity issues. Medical professionals typically categorize these issues either hypo-sensitivity or hypersensitivity.
Issues can arise later in life when they become teenagers and they may be unable to brush their teeth properly – this can cause frustrations and meltdowns.
Unflavoured toothpaste was initially developed as a result of autistic children who have a problem with taste even to the extent of not liking the taste of water.
Specially formulated toothpaste for people sensitive to strong flavours available in a range of fluoride strengths.
Dental professionals and companies are actively researching ways that they can help individuals with differences to improve their oral hygiene.
Sensory tips for brushing teeth
How do you get a child with sensory needs to brush their teeth? You could try:
● Use a Visual Schedule
● Create and use a consistent routine
● Use a timer
● Use a fidget tool as a distraction
● Sing a song. Play music (child’s favourite song)
● If using a manual toothbrush, try a battery/electric toothbrush or a different design of brush
● Toothpaste - A toothpaste containing 1000 ppm fluoride, until the age of 7. This can be unflavoured/mild flavoured but check the fluoride content for enamel protection
● If the child is old enough, use disclosing tablets to show areas that are being missed by brushing and supervise as the tablets contain food colouring (Read instructions before use and check for allergens.)
● Where possible brush twice a day. Start with morning and add brushing one hour prior to bedtime (brushing teeth before sleep can be a stimulant and wake the child/children up)
● Manufacturers are now producing mild/ unflavoured toothpaste for adults. Check that they contain 1450 ppm** fluoride for enamel protection
Food
Whenever I talk to parents the subject of food comes up…
‘They won’t eat anything with colour, flavour, certain textures’.
‘A knife and fork is a problem’
‘Sometimes they will eat sometimes not’
‘They don’t like food touching’
As frustrating as this can be for parents/carers, it is important to note that these can all be tell-tale signs that there is something else going on. Have there been any issues at school/college/nursery? Are they feeling overwhelmed by anything?
Not eating or being more particular about the foods eaten can be a sign of heightened anxiety levels. It can also be a sign of arfid –avoidant restrictive food intake disorder. A third of autistics have this. I found my child’s menu and tolerance levels to do with taste varied dramatically depending on their mood. Sometimes they would like curry or something with what I would call strong flavours to plain pastas, no sauce, cheese or anything added.
Do they know what ingredients have gone into their food?
Sometimes cooking with them can help and it can be fun!
Buying plates that have sections on them can help to alleviate the anxiety of different foods touching.
They can also be linked to sensory requirements and can be down to the fact that fine motor skills are not as developed as they could be. Occupational therapists may be able to help in this area.
The key thing is not to get too precious as this can cause more distress and discomfort for the individual.
Weighted cutlery or foam handles on cutlery can help control and grip if fine motor skills prove difficult in this area.
Some children/young adults and older adults prefer to eat without cutlery, some don’t like getting food on their hands. There is no right or wrong answer here, it’s about being guided by your child and finding what interventions provide some relief that ease and allow your child to eat a meal.
It may just be that they know what they like and what they don’t and it’s as simple as that.
If they only eat a specific food, do not stress about it or force the issue - this can make things worse.
As they get older, let them taste other foods, if they do not like it, they do not have to eat it, but praise the step they take to try it.
ARFID
What is avoidant restrictive food intake disorder?
Avoidant restrictive food intake disorder is a relatively newly recognised condition that describes feeding difficulties such as:
● An apparent lack of interest in eating or food
● Avoidance based on the sensory characteristics of food
● Concern about aversive consequences of eating (for example being sick or choking)
● To be given a diagnosis, the feeding difficulties must be severe enough to impact the child or young person’s ability to meet their:
● Energy needs
● Nutritional needs
● Psychosocial functioning (ability to perform their dayto-day activities)
This would typically be associated with:
● Concerns around weight or failure to grow as expected
● Nutritional deficiency
● Dependence on alternative feeding (such as supplements or tube feeding)
● Significant difficulties in psychosocial functioning, which means difficulties functioning in daily life (such as poor school attendance, not eating all day at school, unable to attend family, peer or school functions)
Avoidant Restrictive Food Intake Disorder Service
This service is a countywide specialist community eating disorder team for children referred by healthcare professionals.
The team offer community-based assessment and intervention for children and young people under the age of 18 years, with suspected or diagnosed avoidant restrictive food intake disorder, sometimes referred to as ARFID.
They do not offer treatment for anorexia nervosa, bulimia nervosa or binge eating disorder. If you feel that you or your child are suffering from these conditions, refer to the links further down this page.
www.cornwallft.nhs.uk/arfid-service/
Sensory equipment
Below is a list of equipment suggestions that can assist your family and help to regulate an autistic individual.
● Weighted blanket – to assist with sleep/ self-regulation
● Sensory sheet – a microfibre tube that goes over the mattress to assist with sleep
● Sensory lights – can help to create a calm environment
● Fidget tools – can help with self-regulation and focus
● Bite tools
● Sensory multi textured blanket
● Weight lap blanket – This can help at school and at the dinner table
● Ear defenders to assist in environments like shopping centres and supermarkets. Or when out and about as unfamiliar or unexpected situations noise can be overwhelming and cause dysregulation
● Seamless socks – Seams can cause anxiety and stress as they can be uncomfortable for the individual
● Velcro shoes – laces can be difficult to do for an individual with autism
● Labels cut out – they can irritate and cause discomfort and anxiety
● Velcro school shirts – check with supermarkets and stores online – easier than buttons
● Clothing textures – if textures are too rough, they can cause anxiety and stress
● Cutlery – ergonomic and weighted to assist co-ordination
● Plates – divider plates to assist where foods don’t touch. This can assist with foods eaten
● Cups – Allow the individual to choose their own
● Toothpaste/brushes – see more information on page 25 to 27
● Washing Powder – ensure it’s unperfumed and creates softness
This list is not exhaustive, you may find other pieces. What works for one individual will not necessarily work for another. It may be helpful to do your own profile to understand the sensory requirements.
What is co-regulation?
“Co-regulation is a supportive, interactive, and dynamic process,” says Lauren Marchette, a child, adolescent, and family psychologist and a lecturer in psychiatry at Harvard Medical School.
Through warm and responsive interactions, caregivers help young people learn better ways to regulate their emotions during the inevitable upsets and challenges of life. “At its heart, co-regulation is connecting with a child who’s in distress and being able to evaluate what that child needs in the moment to help calm themselves.”
But before a parent or trusted adult can help a child, they need to understand — and possibly expand — their own emotional skills and limitations. Emotions are often contagious, whether a person is upset or sharing a sense of calm.
“The tricky part of co-regulation is that adults have to recognize
how they’re feeling and be able to regulate their own emotions in difficult moments so they can help children to gain these same skills,” Marchette says. “But this will be so important for kids to develop healthy relationships over time, and affects how people do in school, work, and life in general.”
How does building emotional skills help children and teens?
As children grow up, they learn different skills — how to build a block tower, play a sport, or solve a math equation. They also learn emotional skills: how to recognize and handle feelings of anger or anxiety, for example.
Known as self-regulation, such emotional skills are truly the basis of wellness in life, Marchette says. By consistently practicing co-regulation, parents and other trusted adults foster self-regulation skills in kids.
Self regulation
Self-regulation is the ability to manage your emotions and behaviour when in situations that may evoke stress, anxiety, anger, and frustration.
This includes being able to identify your feelings and channel them appropriately when presented with challenging circumstances.
These skills, which are developed over time, enable children to reflect on the consequences of their actions before adapting their behaviour to focus on their ultimate goal, even in unpredictable or uncertain times.
Supporting children as they develop emotional regulation skills in a range of contexts will provide them with a stronger foundation for academic and social success.
Many children, including autistic individuals, can find regulating their emotions and behaviour more difficult.
They may have a short temper, suffer from emotional outbursts and frequently react in an unreasonable manner.
“You will be ok!”
The list of self-regulation skills is wide-ranging, involving:
● Emotional awareness and literacy, including the ability to identify emotions
● Emotional regulation skills such as self-soothing
● Perspective-taking, or the ability to “walk in another’s shoes”
● Social skills such as taking turns and practicing patience
● Paying attention and remaining focused when needed
● Problem-solving
● Thinking flexibly
● Time management skills
● Goal-setting
What are the potential benefits of co-regulation?
● Co-regulation enables kids to eventually learn to handle stress
● Resist immediate gratification
● Avoid hasty, ill-informed decisions
● Make and stick to plans
● Solve problems
● Adapt to challenges
● Take healthy risks
Some research suggests that having better self-regulation skills is linked to more positive outcomes in life, such as higher income and lower rates of substance use and violence.
Who might especially benefit from co-regulation?
Everyone wins when kids are better able to navigate frustrations and manage their reactions to their thoughts and feelings. Parents, teachers, coaches, guidance counsellors, mentors, and other adults who interact closely with children also stand to benefit.
A few ideas that may help you to regulate your child:
● Use emotion cards so the child can show you how they feel without having to describe it to you. Red, yellow and green cards.
● Use a ‘special interest’ to help them self-regulate
● Utilise their interests – these can be calming
● Establish routines and consistency
● Emotions chart
● Movement breaks both at home and at school
● Deep pressure such as weighted blankets or massage
● Breathing techniques
● Practice mindfulness
● Model Self – regulation
● Create a quiet sensory area: play tent, cupboard, lava lamp, radio, shed, playhouse – it can literally be anywhere that gives them time alone in a calm environment
● Fidget tools
● Lego
● Painting or craft
● Fresh air – scavenger hunt in the garden or woods
● Trampoline - bouncing
● Pushing as hard as you can against a wall
● Stretches and star jumps can be useful
● A pet may help
Sometimes good distractions can be all it takes…try it
Meltdowns/ shutdowns
Many autistic people have meltdowns. The public often finds it hard to tell autism meltdowns and temper tantrums apart, but they are very different things. If your family member or the person you support has meltdowns, find out how to anticipate them, identify their causes and minimise their frequency.
What is a meltdown?
A meltdown is an intense response to an overwhelming situation. It happens when someone becomes completely overwhelmed by their current situation and temporarily loses control of their behaviour. This loss of control can be expressed verbally (e.g. shouting, screaming, crying), physically (e.g. kicking, lashing out, biting) or in both ways.
A meltdown is not the same as a temper tantrum. It is not bad or naughty behaviour. When a person is completely overwhelmed, and their condition means it is difficult to express that in another way, it is understandable that the result is a meltdown. Communication can be extremely difficult during a meltdown – try not to ask excessive questions. Make sure they are in a safe space and if not, a trusted individual/s should try and guide them to safety. Only one person should communicate with them gently and without using too many words.
Meltdowns are not the only way an autistic person may express feeling overwhelmed. They may also refuse to interact; withdraw from situations they find challenging or avoid them altogether.
Top tips for managing after school meltdowns
Managing after schools meltdowns.
It’s a topic we discuss a lot with our customers. Your child has had a fantastic day at school, then comes home full of frustration, anxiety and sometimes anger. But why and how do you manage this behaviour?
Put yourself in their shoes. Your child has been in a controlled, structured environment all day. They’ve focused, participated and listened for several hours. As soon as they are home it’s like a release of energy. Home is their safe place to let out all the built up frustration from their day. They are now in their safe space to let it all out and the challenge most parents face is ‘how do we manage this?
As parents of SEN children we have experienced many ‘after school meltdowns’. It’s important to stress that we shouldn’t stop this behaviour, your child needs to express themselves. Instead, we need to learn how to manage this behaviour so our children can express themselves freely and most importantly safely This article shares some of our top tips for managing this behaviour.
Establish a Predictable Routine
Start by creating a daily schedule with consistent routines. The predictability of a routine provides a sense of comfort and security for children with additional needs. Visual aids such as charts or pictures can be used to help understand and anticipate daily activities. They allow the expression of emotions and can be used to direct and prompt what is going to happen.
Talking your child through the daily routine can help to avoid after school meltdowns, and instead foster a safe space for them to release. Create an after school routine that dedicates time and space for your child to process their day in a controlled way. For example, if being in a quiet, calm space helps your child relax, show this on the timetable. If your child gets very energetic during their meltdown then perhaps a body sock, or some gross motor activities will help them to a release in a safe manner.
It’s important to create an after school routine that supports your child to release their emotions in a safe way. Having a visual representation of this routine on a timetable reassures them that this time is dedicated for them to process their day. Be consistent and allow for this time each day, and this familiarity can help reduce the severity of the meltdown.
Provide a Quiet and Calming Environment
This may seem like a very obvious tip, but it’s so important. Designate a quiet and comfortable space where you or your child can retreat if feeling overwhelmed. It doesn’t need to be a whole room, just a nominated space that’s a calming environment. Talk to your child about the space and let them know that it’s for them to use if they are feeling overwhelmed. Consider adding sensory-friendly elements such as soft lighting, bubble tubes, comfortable seating, or sensory tools like fidget tools.
If space is limited then pop up sensory dens are the perfect solution.
Top tip: Pick resources that you or your child respond well to. The idea of this space is to provide comfort in a safe environment that will help to calm Use go-to tools and favourite resources that you know will help. Consider different textures and involve them in choosing what will go into the space so it’s familiar and relaxing.
Weighted Therapy
Weighted Therapy has long been used as a tool for reducing anxiety and stress. The combined weight and pressure helps those who are ‘sensory seeking’ to relax, focus and calm. Applying a weighted product can feel like having a big hug. This can be incredibly reassuring to someone who is feeling overwhelmed, frustrated or on the brink of a meltdown.
Weighted products can include weighted blankets, weighted lap pads and shoulder wraps, weighted jackets and vests, weighted animals and weighted cushions.
Weighted Therapy can be used in a variety of ways to help calm your child after school. You could take a weighed lap pad in the car, to help calm on the way back home. The knowledge that this is in the car waiting for them can act as an added comfort. Couple with a pair of ear defenders to reduce uncomfortable noise and have a bag to hand with their favourite fidget tools to focus on.
Once home you could get your child to sit or lie with a weighted blanket. The combination of gentle weight and pressure helps the whole body relax and calm, preventing meltdowns. We know first hand how calming a weighted object can be so do try one and see how your child gets on!
Top tip: If you are new to Weighted Therapy we would suggest starting with a weighted animal or weighted lap pad. Weighted animals are available in a range of cuddly designs and you can choose from various fabrics for the lap pads.
Safe Stimming
After school meltdowns can often lead to increased stimming. If you or your child is prone to biting or chewing objects when anxious, you may want to try a sensory chew. These are safer and more hygienic than clothes, toys, pencils and in some cases fingers and hands.
There are a range of sensory chews that are perfect for those who bite and chew. The range combines the best in safety and hygiene with textures, different levels of hardness and shapes. Whether its a Sensory Chew for the wrist, pencil or around the neck on a safety lanyard.
Fidgeting is another form of stimming and you may find this increases during periods of anxiety. Fidget tools are the perfect tool for keep fidgety hands busy, helping to refocus and reduce anxiety. Cost effective and available in a range of designs, they are ideal for at home, the car, school or whilst out and about. Be sure to select fidget tools that are appropriate for you or your childs needs. Steer away from squishy or gel filled tools if the user is prone to chewing or biting.
Top tip: Make sure to always have a backup or spare sensory chew. Take it from us, it can be incredibly stressful trying to source a sensory chew last minute if you lose one!
Encourage Sensory Breaks and Exercise
It’s important to recognise and address sensory needs by incorporating sensory breaks into the after school routine. Allow time for activities that stimulate or soothe the senses. Activities such as stretching, moving, rolling, blowing bubbles, eating a healthy snack or tactile play all offer sensory input. Therapy balls, scooter boards and resistance bands can be great ways to get the blood pumping, reduce the stress levels and leave your child feeling happier and calmer.
Top tip: Sensory breaks are usually around 10 minutes at a time, but may be longer if you are very anxious. Here are our top 5 easy sensory break ideas to do at home.
● Get moving! Simple, fun and costing nothing. Stretch, dance and move your body to help reduce tension and have fun!
● Play with therapy putty or playfoam. Squeeze, stretch and pull to exercise hands and fingers
● Sit inside a sensory den and enjoy watching calming sensory lights
● Jump on a trampoline and bounce the stress away!
● Climb inside a body sock and get whole body sensory feedback
For more top tips for after school meltdowns see the link below: https://shorturl.at/XREBn
Bedwetting
Drinking Totals in 24 hours for everyone to ensure a strong and healthy bladder:
1-3 years:
1 litre (6-8 x 120-150ml drinks)
4-8 year olds:
1000-1400mls per 24 hours (6-8 x 150-200ml drinks)
9-13 year olds:
Girls 1200-2100mls per 24hrs
Boys 1400-2300mls per 24hours (6-8 x 200-250ml drinks)
14-18 years (adults):
Girls 1400-2500lms per 24 hours
Boys 2100-3200mls per 24 hours
Night Wetting
It is common for an autistic individual to toilet train at night at a later age.
This is due to a number of reasons from developmental delay, to understanding their body and what certain internal signals mean. The brain may ignore signals from the bladder including the urge to go to the toilet.
It’s important to know that certain things can affect vasopressin (the hormone) in its release and production.
Periods of change and stress in a child’s life can also explain why they may suddenly start to wet again, even after a long stretch of dryness.
Vasopressin, the hormone that controls how much urine we produce at night can be affected by anxiety. When children feel worried, they produce less vasopressin, so bedwetting is more likely.
Here is the link to the ERIC website where you can find diagram, pictures, and booklets helping to explain continence issues in children: www.eric.org.uk
NB - It is not the child’s fault. Praise should be given for drinking and helping to implement the basic advice, rather than focusing on the result which the child has little control over.
Please refer to the School Nursing Team via the Early Help Hub for further assessment and support if required, especially if you wish to consider using the alarm: www.cornwall.gov.uk/earlyhelphub
If you feel that you would like to explore desmopressin, please speak to your GP.
Desmopressin is only available from the GP on prescription. The GP may suggest trying this if there is no improvement after following the basic toileting advice as your child’s selfesteem may be starting to suffer. It may also be considered as a temporary treatment to cover instances such as residential school trips.
Our advice is based on NICE Guidance (National Institute for Health & Care Excellence):
Overview | Bedwetting in under 19s | Guidance | NICE
And ERIC Website: www.eric.org.uk
NICE guidelines ref: 1.10.2 Consider desmopressin for children aged 5–7 years if treatment is required and rapid onset and/or short-term improvement in bedwetting is the priority of treatment or an alarm is inappropriate or undesirable
It will take time to achieve dryness. Early signs of a response and progress may include smaller wet patches, waking to the alarm, the alarm going off later and fewer times per night and fewer wet nights.
Sleep
It’s well known that sleep can be difficult for some autistic children, whether its falling asleep, staying asleep or not requiring as much sleep as everyone else.
When my children were younger sleep was a huge struggle every night!
We tried many different strategies and obtained lots of helpful tips and advice to aid with sleep.
For our youngest child, melatonin helped. Melatonin is a hormone that occurs naturally in your body. At night, your levels of melatonin rise, before returning to normal during the day. This helps to control how and when you sleep.
You can take a synthetic version of melatonin for short periods if you have sleep problems such as insomnia. This adds to your body’s natural supply of melatonin, so you fall asleep more quickly and you’re less likely to wake up during the night. It may also help with symptoms of jetlag.
Melatonin is mainly used to treat short-term sleep problems in people aged 55 and over. It can also sometimes be prescribed by specialists to help with longer-term sleep problems in some children and adults.
Melatonin is available on prescription only. It comes as standard tablets, slow-release tablets, capsules and a liquid that you drink.
www.nhs.uk/medicines/ melatonin/about-melatonin/
This helped for several years. He is now a young man and although the melatonin no longer works for him, he is able to stay in his room and accepts the fact that sometimes he just doesn’t sleep.
However, during his school attending days this was extremely difficult.
As you will be aware, when you sleep your body processes the day’s events. It heals and plays a very important job in mental health and with your ability to function day to day.
I found on the days where my children did not sleep, their behaviours were more prominent as they were unable to utilise any self-calming and regulation tools and methods, it was just too overwhelming.
I know if I don’t get enough sleep I am like a bear with a sore head and not a nice person to be around, so I cannot even begin to imagine just how difficult it can be if you have other things going on.
It can heighten sensory responses, affect concentration levels, upset your stomach, which in turn affects food intake and drinking.
There was a period where my son could go for five days straight without any sleep and you would not know that he hadn’t slept – until he crashed and even then, he did not sleep enough to catch up with what was missed. Sometimes this could make his coping strategies worse.
Tried and tested methods:
● Blackout blinds/curtains
● Lava lamp/night light
● Reflective stars on the ceiling
● Calming music – classical radio/ white noise
● Warm bath before bed
● Lavender baby bath
● Lavender pillow/room spray
● Soft or deep massage – dependant on child and their preference with touch
● Warm drink before bed
● Eat a banana for magnesium which aids sleep
● Rigid bedtime routines
● Exercises before bed – star jumps to remove excess energy
● Some older children respond well to caffeine before bed – for some this can help sleep (I realise this sounds backwards) in no way am I advising you to try this on younger children at all, but my 18-year-old found that sometimes this helped
● Music and light (even radio/white noise) –can create a calming environment especially at night-time
Each individual will require a sleep plan.
Schools CAN help…
It is important to remember that EVERY child is different, and EVERY child requires something different.
If you feel your child requires additional support, then discuss this with the school or childcare provider – you know your child better than anyone.
If something isn’t right for your child, then speak up – how will they know if you don’t tell them?
Plan a meeting with your school SENDCO (all educational settings have one). These meeting will need to be parent led – you know your child the best. Sometimes these meetings can be nerve racking and frustrating if schools are not seeing the behaviours or your concerns – keep a diary of your concerns, to present as part of the meeting/assessment. For more information on our diary, email us at: beat4autism@gmail.com
Discuss what screenings the schools undertake? Dyslexia, mental health?
Do you require an educational psychologist assessment?
It costs the school to bring in psychologists and some schools can be very reluctant but keep pushing if you feel there is a benefit in doing so.
Schools need to keep up-to-date and listen to the views and concerns of the parent/carer.
Do you require an EHCP?
An Education, Health and Care plan (EHCP) is a legal personalised document.
It sets out the education, health and social care needs of a child or young person: aged 0 to 25 years old with special educational needs or disabilities, who needs more support in their educational setting beyond the usual resource they provide.
Do not accept a plan, do review process – insist and give reasons why you feel an EHCP is needed. Again, a diary is extremely useful here. If they do support you, ensure you have your input added as the information written via the school can be sparse. If the school will not support the application, as a parent you can complete a self -referral.
Speech and language assessments can also be done via school referrals.
Referrals to the school nurse can be useful for a range of different concerns with your child’s health or development – have evidence ready for when you have these meetings, or you may be dismissed.
Research intervention options so that you know what you are talking about and where you feel your child may benefit from certain interventions. I.e. Occupational Therapy, Psychology, Speech and Language therapy.
As parents of autistic children, we know very well how costly it is to provide daily items to ensure our child feels comfortable, to eat, sleep, play and function in everyday life.
There are a few additional funds that may be of some use, not just for the additional finances but what the entitlement means and how it opens doors to additional support and benefits:
Disability Living allowance (DLA) Children under 16
Be warned this is a 74-page document that requires an immense amount of detail in many differing aspects of everyday life. It is much easier to complete this form after you have completed at least one months’ worth of a daily diary.
Evidence is key so talk to schools, doctors and other specialists involved with your child to make sure you have all of the reports and letters to support your application. If all of the evidence isn’t quite ready, send the form in and send the evidence on later. No diagnosis is required to qualify for this benefit.
These forms can be very tough to complete as they can show you just how much you put in place to enable your child to be as comfortable, happy and functioning as they can be possible in a range of different areas, e.g. Additional funding streams, additional support
at school/college or nursery and days out with concessions or priority queueing. REMEMBER to photocopy your forms. Completing this form can be upsetting as you are describing the difficulties of yours and your child’s daily life – be gentle with yourselves.
Personal Independence Payment (P.I.P) for young people/adults over age 16
This is also a lengthy form. It is also worth noting that if your child is in receipt of DLA this will change when they turn 16 – although you have to apply and it is notoriously difficult to qualify for P.I.P, the key is not to give in, go through all of the appeal processes.
Again, P.I.P entitlement can open doors for the older child or adult. NO diagnosis is required to qualify for this benefit.
Motability Scheme – This can provide wheelchairs, scooters or cars for those who qualify for higher rate mobility element of P.I.P or DLA. The payments are taken from your entitlement to pay for the vehicle, wheelchair or scooter.
If you are interested in this scheme, be mindful - waiting times can be quite long after selecting your item.
More information on how to claim can be found here:
www.gov.uk/pip/how-to-claim
Cornwall Council Blue Badge Scheme
If your child/young person or adult has mobility issues or concerns, the blue badge scheme can provide a blue badge to give better accessible parking spaces in and around Cornwall. Please note these are not to obtain free parking, and you are still expected to make the relevant payment in the majority of car parks.
Cornwall council issues these blue badges at their own discretion. (NO diagnosis is required)
It is worth noting that there is also a small charge to obtain one if your application is accepted.
There are also a range of different grant funds that may be accessible for specific items that support your child/young person or adults needs, however these usually require a qualifying benefit such as DLA or P.I.P.
To search for grants please check out Turn2us website and tailor your search:
https://grants-search.turn2us.org.uk
There are also some local charities that may be able to source small items for you. Family fund and Action For Kids as a starter.
For grants or funding to have home adaptions undertaken or support aids, it’s worth discussing with Cornwall Council as they can point you in the right direction for financial support. It may also be worth asking for an Occupational Needs Assessment from Cornwall Council as they will be able to assess your home against the child/ young person or adults needs and provide you with an idea of the items that may be useful. They can also supply support aids without the need to purchase them.
Useful links
ARFID Awareness UK
Charity dedicated to raising awareness and furthering information about Avoidant/Restrictive Food Intake Disorder www.arfidawarenessuk.org
Passenger Assist is a national system used by all train companies www.gwr.com/travel-information/passenger-assist
PDA
Pathological Demand Avoidance, part of the Autism Spectrum www.pdasociety.org.uk/resources/pda-society-statement-aboutdiagnostic-terminology/
Sensory Spectacle
Educating and raising awareness of Sensory Processing Disorder through immersive learning www.sensoryspectacle.co.uk
SOS SEN
Helping you secure the right SEN provision for your child https://sossen.org.uk
Spectrum Gaming
Charity that supports autistic young people www.spectrumgaming.net
Sunshine Support
We empower and advocate for parents, carers, and professionals who support children and young people with SEND. https://sunshine-support.org
The Autism Team, Cornwall Council www.cornwall.gov.uk/schools-and-education/special-educational-needs/ council-support-services/autism-spectrum-team/
The Autism Pathway
Child and adult autism assessments www.theautismpathway.co.uk
The National Autistic Society www.autism.org.uk
The NHS www.nhs.uk/conditions/autism/
The SEND Collaborative https://www.sendc.co.uk
The Sensory Projects www.thesensoryprojects.co.uk
Tigger Pritchard
Neuroaffirming Advocate, Consultant, Presenter and Trainer www.tiggerpritchard.com
These are just a few examples, there are many more.
“Today is a fresh start”
Books
Autism: handle with care!
Understanding and managing behaviour of children and adults with autism, by Gail Gillingham (1995)
Tigger Pritchard Books
Neuroaffirming Books, publications and other book lists. www.tiggerpritchard.com/books
About us
I am Lizeta and I have two children, both diagnosed Autistic.
Our diagnosis journey was extremely long, drawn out, painful, stressful, and very mentally draining.
The process is not easy nor straightforward and this is just one part, the hardest was yet to come. There was no help, advice or signposting after diagnosis and definitely no mental health support for the family. We found the children’s younger years to be very isolating and everything came with a fight.
Fighting to gain support from Cahms, local authorities or doctors, the list unfortunately is endless. It has become second nature as it seems you cannot get the support for your children without fighting for it.
When I started Beat4Autism
C.I.C it was my sole mission to make sure that no other individual or family had to feel the way my husband and I did. I wanted to provide support, signposting and advice for anyone who needed it.
Since Beat4Autism began we have grown in so many ways; supporting families has remained the priority.
We also offer events to our local community such as the Big Picnic where children can play together without judgement and parents get to talk to others in similar situations. The Beat4Autism’s autism and sensory friendly Magical Christmas Grotto, where there’s no queuing, lights are low, and music is faint in the background. This is just to name two.
I have met many wonderful people and families along the way that have been feeling the struggle without any support.
Lesley and I have become friends and have been supporting each other.
I tend to be able to support from a non-military point of view and Lesley from a military point of view. Together we have created this guidance document that we hope you will find useful.
When we began writing this it was very much about
creating a ‘coffee table’ guide that can be used as a quick reference when in a crisis situation, It was never to give you the ins and outs of autism, because as I am sure you will understand, no matter how much research you do there is always more updated information. It is not meant to be a medical document with lots of terminology that can be difficult and confusing. What we have tried to do is give you a little overview of some subjects and provide useful links for you if you wish to read on.
I really hope this guidance document provides comfort, understanding and quick tips when you’re in need.
Lizeta Fellows
I am Lesley. I have two children who are neuro divergent.
I am Dyslexic and Ex military, so being a service family my diagnosis journey for the children has been slightly different, yet still exhausting and frustrating at times. Due to relocations, deployments and secondary duties, it has been difficult at times to balance the needs of my job and the needs of the children.
The Armed Forces Covenant states that “as a regular, reserve forces personnel, as well as veterans, should not be disadvantaged in any way with regard to the provision of public and commercial services, compared to other citizens”. We informed Cahms that we were a military family so that we would not be disadvantaged by moving out of area due to military relocation. If we had not done this, we would have been placed at the bottom of the list in a new county, starting this process all over again.
I felt isolated and judged for the child’s behaviour but had little/no support as I had no family near me to help. Having received the first diagnosis in August 2020 I was then left with some links and basic information but nothing that was helpful to me and the children. By the time we had the second diagnosis in January 2023 this had slightly improved, but it was still a struggle to get the correct support for the children.
I met Lizeta Fellows (Director of Beat4Autism) in the spring of 2020 and this changed everything! She helped me to see that I was not alone and that there was help available for both me and the children, if you know where to look.
Over time, I realised that other military families were also struggling with ASD/ ADHD issues, but was there help available? I was introduced to Rebecca Fyans MBE and attended a Families Additional Needs and Disabilities Forum (FANDF) event in London. It was great to meet other families experiencing the same difficulties as we were. It was helpful to hear their stories and share ours without being judged. (As a parent of a child with additional needs, we do feel judged!) I then became both dyslexia advocate and a neurodiverse Champion within the Royal Navy, so that I could help other families with their journey on the neurodivergent pathway.
As I was currently serving within the Royal Navy when the children were diagnosed, I felt that it was important to engage with military services to see what support networks were available to myself, the children and other serving families. In doing this, I discovered that there was support available if you spoke to the right people and knew where to look. I felt that our directory would enhance that offer. We approached a Naval charity to showcase this directory
and to explain how it could help serving personnel and their families.
The information in this directory is not medical, and we are not academics in this field, but we do have a lived experience and have sat through a lot of webinars and parent help courses (of which I share with others), which I believe is worth more. I would rather listen to someone who understands the realities of living with neurodivergent children, rather than just studying them.
I hope that you find this directory helpful on your journey. It does not provide all the answers but will hopefully guide you in the right direction to help your family.
I wish I had access to this guide in 2020, I would have been able to help the children sooner.
Lesley Higgs
What an amazing read! If I’d have been given this - the heartache it would have saved me.
It’s so clear and so precise - it tells you exactly what you need to be doing. It un-bugs it all and makes it easier to manage.
It’s also full of hope.
“This is going to be a tough ride mummy, but you got this, don’t give up!”
I’m really blown away - I can’t tell you the difference it would have made to me.
— Hayley, parent.
Sometimes we need someone to simply be there,not to fix anything, or to do anything in particular, but just to let us feel that we are cared for and supported
Please contact us if you have other information and services that have helped you and feel it would help others but has not yet been included in this document.
