Positive Approaches to Parenting / Partnering Autistic Adults (PAPA)
Š 2019 Alongside Autism
Positive Approaches to Parenting / Partnering Autistic Adults (PAPA)
Chapter 1
Introduction ......................................................................................................................................................................................................................... 1 Chapter 2
Communication ............................................................................................................................................................................................................ 7 Chapter 3
Change and motivation ........................................................................................................................................................................... 13 Chapter 4
Relationships ................................................................................................................................................................................................................. 21 Chapter 5
Anxiety and mental health ................................................................................................................................................................ 25 Chapter 6
Sensory differences .......................................................................................................................................................................................... 35 Chapter 7
Review and looking ahead ................................................................................................................................................................ 40
Š 2019 Alongside Autism
Chapter 1
INTRODUCTION Chapter summary Every autistic person has differences and difficulties with social communication, social interaction, imagination and sensory sensitivity. Every autistic person has a unique combination of these differences. The key is understanding how the individual is affected by their autism. Focusing on strengths as well as identifying areas where support would be useful.
Introduction to Autism Spectrum Conditions (ASC) Autism Spectrum Conditions (ASCs) have existed as long as there have been human beings. This is because ASC is part of the human spectrum of neuro-diversity. Although we all share basic brain structures, the way different parts of the brain are connected and work together is due to intrinsic urges or instincts, life experiences and personality. Essentially, how our genetic makeup is expressed throughout life depends on our biology, our psychology and our social experiences. As a consequence we all work slightly differently on a neurological level: some of us have strengths in some areas such as logic or mathematics, others have strengths in social areas and still others have strengths in visual processing and memory. Given the infinite number of combinations in strengths and areas of development, it is not surprising that we are each unique individuals. This means that the way everyone’s autism affects them is also different. You may have strengths or challenges that someone else with an autism spectrum condition does not have or has to varying degrees compared to you.
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There is a spectrum of neurological functioning, the neuro-diversity spectrum, and Autism Spectrum Conditions are one part of the neuro-diversity spectrum of human functioning. Some areas of the neuro-diversity spectrum impact on an individual’s ability to function and share in our majority-led ‘neuro-typical’ social world. This can mean that it can be difficult or even impossible to adapt to social demands. For example, it may be that you have always found group situations really hard to cope with, and in situations like this the different way your brain functions is more noticeable. As humans we have always been obsessed with classifying, describing and understanding differences in the world around us, whether this relates to our physical world, unseen forces, animals or people. As we have become more scientifically-minded and developed ways of examining and understanding the small building blocks of our physical world we have also tried to better understand differences in human experiences and the biological, psychological and social reasons for this. So although ‘Autism Spectrum Conditions’ were not described as such until the 1940’s, we have always had descriptions and stories of people who have been ‘different’. This means that essentially ASC is nothing new; but our understanding has increased and we continue to try to develop a better understanding. People have finally begun to listen to and involve individuals with ASC in this quest, which has greatly improved our understanding, but there is still have a long way to go to make our world more autism-friendly and inclusive. Identification of Autism Spectrum Conditions is a complex task and usually involves describing the life-long difficulties an individual experiences and ruling out certain biological, psychological or social causes, as well as looking for unique sets of strengths and areas of development. Autism Spectrum Conditions are part of the neuro-developmental conditions spectrum,
which includes ASC, ADHD (Attention Deficit Hyperactivity Disorder) and ADD (attention Deficit Disorder), Tourette’s and tick disorders; and Pervasive Developmental Disorder (PDD). Neuro-developmental conditions affect the way a person thinks, interacts and interprets the world around them. They do not affect physical development, such as growing from an infant into a toddler, child, adolescent and adult. It is not unusual for an individual identified with one neuro-developmental condition to also show signs of the others, but they may not be sufficiently affected to warrant further diagnosis or identification. However, we may see neuro-developmental condition traits in the wider family. There is still some confusion about the terminology or labels used to identify and describe a person’s difficulties associated with ASC. Firstly, these labels are very much based on a ‘deficit model’, this means they focus on the person’s difficulties and areas of development rather than their strengths. This can make the process of having an assessment even more difficult and may impact on the identified person’s self-esteem. You may have found this when they went through the assessment, but it is really important to also think about the strengths and unique characteristics. All of us are different, and whether it is a love of words, knowledge of Dr Who, favourite football team, obsession with handbags, or doing the crossword, these unique aspects are great! Secondly, as recently as 2015 the terms ‘Autism’ and ‘Asperger Syndrome’ have been replaced with the diagnostic category of ‘Autism Spectrum Condition; Level 1, 2 or 3’. The new diagnostic category now also includes and acknowledges sensoryperceptual differences and the diagnostic criteria are separated into two groups. The first is about social and emotional reciprocity, the other relates to repetitive and restricted behaviours. Social and emotional reciprocity includes social interaction and verbal communication, non-verbal communication and making and maintaining friendships and relationships. In order to meet the diagnostic criteria a clinician has to demonstrate that
someone has differences in each of those areas and that these difficulties have been lifelong. The second group of diagnostic criteria, repetitive and restricted behaviours, relates to circumscribed interests, stereotypical or repetitive motor-mannerisms, difficulties around change and executive functioning (planning and organising) and sensoryperceptual differences. To meet the diagnostic threshold differences in at least two of those must be demonstrated throughout life, including the early developmental period, i.e. before the age of five. The diagnosis also requires that learning disabilities are ruled out. The specifying levels of severity do not correlate with previously used diagnostic labels such as Asperger’s or High Functioning Autism. Instead the levels specify the current impact on the autistic individual. It is also important to know that the severity levels may change over time. It is also important to remember that the severity levels do not reflect, nor are they based on intellectual ability (IQ); instead, the identifying clinicians will choose the most appropriate specifying level, often in collaboration with the person being assessed. Therefore, the assumption that individuals with a severity level 1 are ‘just a little bit autistic’ is detrimental, just as the assumption that individuals with severity level 3 are ‘severely disabled’. Regardless of label or level of severity each and every person on the autism spectrum experiences difficulties in specific areas which have nothing to do with IQ. However, some individuals are better able to mask or hide their difficulties or have found ways to adapt and develop strategies that make their difficulties less apparent. You may have found that over the years there are certain situations they can cope better with now, and others that are still really challenging. We will briefly outline each area and how these difficulties and differences may affect the autistic person.
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Social and emotional reciprocity Social interaction and verbal communication Throughout the animal kingdom there are rules around how to interact with members of the same and other species; and as long as there have been human beings there have been unspoken rules about how to interact with each other. These rules developed on the basis of reading unspoken (non-verbal) behaviours as well as understanding culturally and socially shared meanings of words (languages). Human society has developed incredibly complex rules of interaction based on countless factors such as age, gender, hierarchy, economic and/ or social statuses, level of education and country of origin to name but a few. Many of these have become so ingrained in humanity that they are likely to be genetically programmed; others need to be learned and are easily learned if there is a strong social instinct to learn the basics of recognising words and behaviours in others. It is thought that autistic individuals are born with a less strongly developed social instinct. This means that a face may be just as interesting, or even less so, than a colourful poster on the wall; or that a piece of music might be more interesting than a human voice. Consequently, it is harder to notice, read, interpret and respond to others’ words and behaviours. Therefore, individuals on the autism spectrum may be very good at understanding words, but not necessarily the context in which it is used, which includes tone of voice, inflection, facial expression, gesture and other forms of bodylanguage. The result is that a large chunk of communication is missed. Instinctive social interaction also helps us to understand and reciprocate others’ mental states, feelings and thoughts, allowing us to see the world from another person’s perspective. There are three theories as to why this might be difficult for the autistic individual.
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The first one is called Theory of Mind. This is the ability to take perspective and is sometimes erroneously associated with poor empathy skills. The truth is that many individuals with ASC do have empathy, but may struggle to communicate this, may take longer to process and/ or understand another person’s feelings and/ or may not know how to deal with the emotions triggered by another person’s emotional response. Difficulties in this area may lead some people to wrongly think that individuals with ASC are egotistical and egocentric. The second theory refers to the ability to ‘see the bigger picture’, which is also called Central Coherence. It is the ability to take a step back, gather and draw on information from a variety of sources and see beyond or make an ‘educated guess’ to understand a situation. Many individuals with ASC tend to focus on the small aspects of a situation or a small aspect of their environment and cannot step back to see a coherent whole. The third theory concerns Executive Functioning. This is our ability to plan, sequence and predict consequences. We know that executive functioning is often difficult for individuals with ASC. As a direct response to this, many like to create or rely on others to create a routine, which creates predictability and consistency and will adhere to it; making change a very difficult experience to cope with. In terms of predictions of consequences, individuals with ASC tend to rely on rules which they have either been taught or have worked out for themselves. Unfortunately, neuro-typicals rarely appear to follow the rules and other rules always seem to be broken. For example, if the train time table says the train will arrive at 15:31 and then it is delayed, this can cause a great deal of distress; or people may say things like ‘in a minute’ and 60 seconds later they still haven’t started what they had promised to do in ‘a minute’.
Non-verbal communication People communicate with others by talking (verbally) and by doing (non-verbally). Generally speaking, those people who fall into the
‘neurotypical’ end of the spectrum use words and behaviours together at the same time and expect others to notice and understand the meaning behind what we say and do; at the same time listen and look for how others behave and what they say. This means we essentially communicate on three different levels: words, behaviours and the meaning we attribute to each form of communication in ourselves and others. Most neuro-typical individuals have a shared concept of what words and behaviours mean, given what they know about the person, the world, social rules and situational context. And they do this without much thinking as they are born with a strong social instinct that has motivated them from birth to look at faces and listen to voices. Now, imagine that your ability to recognise verbal and non-verbal information and therefore unspoken social rules is impaired. This means you will find it harder to recognise and understand social rules, will find it harder to know when to apply which rule and may simply miss complex social cues to tell you which behaviour to select and when and how to use it: you understand a word, but because you have missed the slight inflection and raising of an eyebrow, the meaning of the word has changed to the complete opposite! So no matter how hard you try, you may never really understand others’ behaviours, manage to dynamically adapt yours or respond in ‘socially acceptable’ ways. Obviously, this will have a huge impact on your motivation to be with others, your self-esteem and confidence. You may carry on trying the best you can, may choose to only be with people you are familiar with or you may avoid new people, places and situations all together. Many individuals on the autism spectrum also have difficulty using their own verbal and non-verbal communication skills in a seemingly effective way. Some learn and teach themselves throughout life to choreograph behaviours such as eye-contact or social smiling, which is exhausting. Others try to develop rules of what behaviours mean and when to use them, which is equally exhausting. This may result in what the person conveys verbally and what is
communicated non-verbally may be at odds and make it difficult for neuro-typical people to understand and may lead to misunderstanding, misinterpretation and confusion. Ultimately the act of social communication may become quite aversive, negative and a source of disappointment; and the person on the autism spectrum may choose to avoid this.
Making and maintaining friendships and relationships Some autistic people lack motivation and do not see the point of surrounding themselves with other people; this might be because socialising is stressful and exhausting. Others desperately want to have friends and be in relationship but cannot get the social and communicative aspects right or struggle to understand the complex and unspoken rules about friendships and relationships. This might lead to relationships breaking down or the person being exploited due to their vulnerability. What is important is to recognise is that the needs of an autistic person with regards to friendships and socialising might be very different to that of a neuro-typical individual.
Top Tips on social and emotional reciprocity: Less is more: say what you mean. Be clear and precise. Use other forms of communication, such as written communication. Don’t rely on non-verbal communication to convey additional meaning. Explain a different point of view. Accept differences in social motivation.
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Repetitive and restricted behaviours Circumscribed interests These are sometimes called ‘obsessions’ or ‘narrow, circumscribed interests’. The advantage of having such a ‘passion’, means that they feel confident talking about it, can predict what will happen as they have such vast knowledge, it makes them feel good to be good at something and it increases their motivation. It’s also an excellent ‘time-filler’ if they are not sure what they should be doing. Sometimes, though, passions can become ‘chores’ and take on negative connotations. Sometimes passions are replaced by others over-night and at other times someone may have several passions going at the same time.
Stereotypical or repetitive behaviours These can either be motor-mannerisms, such as rocking, hand-flapping or making repetitive noises or repeating the same phrase or action over and over. Others include more complex behaviours such as non-functional rituals, which do not appear to serve a specific purpose, such as turning lights on and off repeatedly or some checking behaviours.
Difficulties around change and executive functioning (planning and organising) Planning, sequencing and organising can be very difficult for an autistic person. They may plan too little or too much and become distressed and overwhelmed by the small aspects of a plan that they lose sight of the bigger picture. This may result in ‘paralysis by analysis’ or simply not knowing when to stop, such as eating all the fruit in the fruit-bowl and submitting a 100-page project when 10 pages could have been enough. As a result some autistic people may feel safer not to try new things but to stick with what they know as this is safer, more predictable and less anxiety-inducing.
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This also means that coping with change can become a real issue as the person may not be able to plan for or predict an alternative outcome if they cannot follow their usual plan or any plan for that matter. This may also result in what is often seen as rigidity and inflexibility. However, such words appear to imply negativity, but should be seen within the context of anxiety. Difficulties with executive functioning, change and flexibility can also impact on decision-making.
Sensory perception How we perceive the world depends on our brain’s ability to make sense of sensory inputs. Neuro-typicals have very similar ways of doing so and therefore experience the world in similar way: we can agree when something smells bad or is generally too loud. Individuals on the autism spectrum experience the world differently. This may because their brains are ‘wired’ differently: different areas of the brain may be hyperconnected or lack connections and different parts of the brain may not communicate well with each other. This means that the world can look, sound, taste and feel differently. But this does not just apply to the external world, but also the internal world: how pain is experienced, what hunger feels like, what anger feels like and what it feels like to have a full bladder, for example. Some individuals on the autism spectrum may be hyper-sensitive to sensory information. This means that a tiny amount of sensory input causes a huge response. It’s similar to having an allergy where a small amount of something can cause the body to give a huge response, whether that is a rash, difficulty breathing or nausea. As a consequence, we try to avoid the things we are sensitive to. As though hyper-sensitivity is not enough of a difficulty to live with, many individuals with ASC can also by hypo-sensitive. This means that a huge amount of input is required to get the sensory system to notice and to respond. Some individuals on the autism spectrum like
to stimulate hypo-sensitive sensory systems, which is often most noticeable in childhood, by seeking out strong stimuli. This might be strongly-smelling substances, spinning or rocking the whole body or flicking something close to the eyes.
Chapter 1
INTRODUCTION
Use the space below for your thoughts:
Many individuals on the autism spectrum can fluctuate between hyper- and hypo-sensitivity and this is often related to stress or anxiety. At other times this might be unpredictable. As a consequence many may avoid new sensory sensations or stick to ones they know they can cope with or which are enjoyable. Finally, some individuals with ASC may have synaesthesia. This literally means ‘senses crossing over’. Many are not aware that they have this, especially as children, which can make it hard for others to understand or predict a response as this may be rooted in a sensory experience. Examples of synaesthesia are colours triggering tastes in the mouth, sounds causing seeing certain colours or textures causing sounds. As you work through the rest of this booklet bear in mind the complex interaction between social interaction, social communication, social imagination and sensory experience; as well as the impact of each individual’s unique physiology, psychology, social experiences and personality.
Top Tips for repetitive and restricted behaviours: Help with boundaries around interests. Structure and sequence tasks. Predictability. Consistency. Reduce unnecessary sensory information. Encourage sensory experiences to help relaxation. Don’t dismiss sensory experience.
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Chapter 2
COMMUNICATION Chapter summary Autistic individuals often find verbal communication difficult. They may also struggle with using and understanding non-verbal communication, such as facial expressions and body language. Use clear and simple, verbal language. Use visual communication tools, e.g. writing, photos, pictures. Think about how best to communicate when the autistic person is stressed.
Theory Difficulties and differences in communication is a central aspect of autism spectrum conditions. Communication is made up of verbal and non-verbal communication. Communication is a two-way process and effective communication requires each communication partner to understand all aspects of communication. This not only includes speaking the same language but also being able to understand and use non-verbal aspects of communication, such as facial expression, gesture and tonality. Another aspect of communication is being able to read and interpret non-verbal communication and extrapolate meaning, such as emotional state and intent. This involves drawing on social rules, knowledge about oneself and the communication partner to help one make educated guesses about intended meaning, feelings and intent. Individuals with ASC have difficulty picking up and understanding non-verbal communication. This is partly because
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from birth, rather than being primarily focused on watching and interacting with faces and human bodies, individuals with ASC are equally or more interested in nonhuman aspects of their world. You may have noticed that the autistic child was particularly interested in a specific toy, or the movement of a bike wheel. The difficultly in understanding non-verbal communication means that one misses out on a large chunk of information that someone else is expressing through their face or body (nonverbal communication). It also means that there may be difficulty in giving non-verbal communication or the messages being ‘sent’. This means that there may be mixed signals or the non-verbal information being sent is incongruent and does not relate to actual intention. Another part of non-verbal communication is the ‘context’ of the words, and this is culturally and situationally defined. The English language is complex in the sense that some words sound the same and are only distinguished through context: do you have a hair in your soup or a hare? Is it there, they’re or their? Some individuals with ASC struggle to understand the context of words being said, and so misunderstand what is being expressed. Some individuals may create their own words or have their own definition of words, which may be at odds with our ever-changing culture: some may use out-dated words or use words which have changed meaning in the colloquial sense. An example of this is the word ‘wicked’, which now often refers to something that is ‘awesome’, really describing the opposite of its original, negative, meaning. Another example of this is that many individuals with ASC take words literally, rather than contextually and so misunderstand the meaning of the communication. For example someone says to a child ‘if you watch too much TV you will get square eyes!’ And they genuinely feel worried that they may permanently change the shape of their eyes. Many individuals on the autism spectrum may also be affected by delays in processing verbal and non-verbal information, which further adds to difficulties in the speed at which communication is processed and
what may be missed. This can make it difficult to be in and participate in groups. In addition, the social element of being in groups may raise anxiety, which in turn affects processing, so even less may be understood. Therefore, it is not surprising then that an autistic person may either avoid group settings or may dominate them.
Stages of communication There are four stages of general communication development: Stage one - the own agenda stage, which is characterised by appearing uninterested in the people and a tendency to play and be alone. Many children with ASC are often diagnosed because they have not progressed from this stage. Stage two - the requester stage, begins when a child has begun to realise that their actions have an effect on other people and they start to use communication to get needs met and start to use communication for enjoyment. Stage three - the early communicator stage is characterised by interactions that begin to increase in length and become more intentional. Children may also echo some of the things that they hear to communicate needs. At this stage non-verbal communication, such as pointing and gesture start to be used and there is a realisation that communication is a two-way (reciprocal) process. Stage four - the partner stage is the start of effective communication: speech is used and simple conversations are now possible. The child may appear confident but struggles in unfamiliar situations and/ or around unfamiliar people. In these situations the child may use memorised phrases, ignore others or have difficulty in turn taking.
Unless a person has successfully mastered each stage, difficulties will be noticeable, especially when the person is stressed, anxious and in unfamiliar situations. Difficulties may include expressing needs or emotions, managing social situations and developing friendships. ASC is a developmental condition. This indicates that development of certain skills are affected: the autistic person may be advanced in some areas, delayed in others or entire stages may be missed, leading to a poor foundation set of skills upon which to build higher skills. Looking at the stages of development above is it possible to identify at which stage or stages and in which situations the autistic person communicates? Each autistic person will have different things they are okay with and find challenging, and this means that sometimes others may assume they are okay in a situation and don’t realise the difficulties they have.
Top Tips for improving communication Use fewer words. Use less complex language. Say what you mean. Less metaphor. Allow time for slower processing.
Tools to improve communication Visual communication methods As outlined earlier, verbal and non-verbal communication can be interpreted differently by different people, or missed. Having things written down or is a visual way to make things much clearer and permanent, reducing the need for fast processing. Processing any information means perceiving the information through physical senses, making sense of the
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information in a given context, organising a response and giving the response. That’s a lot to do and this is why we often misunderstand each other. If you are sent an email you can take a much longer time to read, process and respond. So think about how you could use more written or visual types of communication.
Written communication (words) Using emails / texts / instant messages / post it notes / letters to communicate. Practice in a familiar setting (i.e. family or partner) by asking them to text or email a shopping list.
Visual communication (images) Using images rather than words is often clearer (e.g. ‘hair’ and ‘hare’). The use of emojis can also be helpful, as are Google images. Using sign-language and gesture instead of words may be easier and quicker particularly when someone is anxious. Some people with ASC become non-verbal (‘mute’) when extremely stressed, so at these times being able to gesture to someone ‘I need help’ can be a lot easier than having to ask for it.
Other visuals for communication
Try it at work or educational setting; for example getting colleagues in the habit of emailing a summary of meetings to everyone afterwards so there is real clarity on what happened and further goals.
Flow charts and diagrams might be much easier to understand and could be useful at work or studying. They can be used for anything from communicating the sequence of holiday plans to a house move.
Social Stories can be helpful to communicate a complicated or emotional situation, or explain to someone something what is going to happen in the future. Social Stories are short descriptions of a particular situation, event or activity, which include specific information about what to expect in that situation and why. Very simply this is just writing down clearly what has or is happening in a few sentences of a paragraph. Go through things step by step, explain different people’s points of view, talking about what will happen, or what the consequences of an action will be. The fact that this is written down in clear, concise sentences can really help getting across the information without misunderstandings. For more information on social stories go to: https://www.autism.org.uk/ about/strategies/social-storiescomic-strips.aspx
Planners and time-tables can be great for communicating day-today and everyday activities and needs. Miscommunication of these routine events can lead to arguments (‘I thought you were going to be home!’). Having planners and timetables can help to feel in control and organised and help to understand where everyone is and what is happening.
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Decision trees can be helpful when trying to think through or communicate decisions, work through the details of a problem or communicate how something should be done (e.g. this is how to use the shower).
Communication environment People with ASC can be hyper or hypo sensitive to the sensory aspects of their environment. It may be difficult to filter all the background stimuli to focus on what is being said or what they want to say. So having a calm, quiet, familiar environment can be really helpful in fostering communication and processing. For example, if one person wants to chat about a problem they have with their family and it may be hard to take it all in, suggest the best possible sensory environment to enable processing. Also consider the general sensory environment at home or at work: is it set up in a way that will help processing communication? Some people with ASC find they can process verbal information more easily if they do not have to make eye-contact, or if they are moving or fiddling with something; if this is the case think about how to support the autistic individual to communicate this to someone. For example, creating scripts such as “I listen much better if I am able to walk around and do not have to look at you; but please know I am listening to you.” Other fiddle objects such as sensory putty or another small object could be useful in situations such as lectures or meetings.
Setting up good communication routines It can be helpful to get in to good habits when communicating with key people. For example, setting up regular times to communicate with family, or work colleagues. These can act as a regular opportunity to check how everyone is, deal with problems and minimise miscommunication. Making these a regular occurrence can prevent miscommunication and arguments in the long run. Think about structuring communication times, so that they take place at a time and location that is most comfortable for everyone. Also think about whether it is useful to have a clear purpose, a clear beginning, pre-defined length and clear ending. For example this could include dedicated ‘chat times’ or regular ‘family discussions’. Or it could be having weekly
meeting with a manager or colleague at work. Imparted information should be clear and purposeful and may include guidelines on what to say in situations and scripting.
Creating codes With the people they know the best or interact with most regularly, the creation of unique systems of communication might be a very efficient way of communicating. For example, some ASC families will generally use texts to communicate with each other: ‘can you make me a cup of tea?’ or ‘dinner in 5 mins’. Or it could be that there are specific word or terms that mean particular things to reduce the volume of communication. For example if feeling depressed and needing support from a partner a pre-agreed phrase such as “It’s a blue day” could communicate that the lights need to be off or quiet company is needed for a few minutes. In some offices internal messaging systems are now used, so instead of having to verbally ask for information it could be sent using this facility.
Managing communication when stressed or anxious It can be most difficult to communicate when feeling stressed, anxious or low. Therefore, thinking and planning in advance how to communicate at these times can be helpful. For example, instead of saying ‘I am feeling low’ a sad-face emoji could be sent by text message. Another idea is to use a traffic light system so that everyone can share what emotion they are feeling and request support (see below). When going into an unavoidable and stressful situation think in advance about communication strategies. For example: Prepare: by using relaxing, positive activities, exercise or sensory strategies. Minimise sensory stimulation in the stressful situation. For example, inner ear defenders, sun glasses, and thinking about where to sit.
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Predictability: what is a realistic amount of time to manage a stressful situation for? Some may be exhausted after an hour. If this is the case plan to leave after an hour. This could be communicated beforehand (in email, by writing etc); or sitting next to familiar people and using a ‘code word’ to ask for help. Planning conversation topics and scripts to manage small talk. The WORM is an acronym for small talk topics: weather, occupation, recreational activities and media (TV films etc). Repair afterwards: taking time to chill out and recover after the stressful event, for example spending an hour on their own before having dinner with the family.
Finally Sometimes it can be hard to communicate for no specific reason at all. If this is the case it’s worth thinking about what has been going on over the past few days: has there been a lot of change or stress? The accumulative effect of small stressors can have a big impact on communication. It can also be difficult to communicate emotions. Autistic people often struggle to describe, understand and express their own emotions. Emotions are subjective, abstract and constantly changing. Using images, metaphor or code can be helpful. For example “I am feeling red” or “its like there is a whirlwind inside me”. Or the description of the feeling could link to something that particularly makes sense to them, such as relating to their special interest. For example, if the interest is animals it may be easier to express the feeling using different animals: bird = happy, excited, or engaged. Some people may want to draw their feelings, which can also be a fun family or partner activity.
Summary of tools Use writing, email, post-it notes, texts, letters. Use visual communication, emojis, photographs, pictures, cartoons, symbols. Use other visuals such as flow charts, time-tables, diagrams. Use gesture, sign language, code words or gestures. Limit and manage the environmental and sensory impact. Set up positive communication routines; regular ‘chat-times’ or meetings. Create code words or code-gestures. Plan for managing communication in stressful situations. Make use of special interests.
Review, plan and do! Making changes to communication using a four-step model REVIEW: Reviewing is a great way of developing selfawareness and it is an opportunity to praise, build up confidence and resilience. Helpful review questions include: What are the challenges? What skills are there to build on? Ideas to try? What is their current communication? What are their preferred ways of communication? What are their current difficulties?
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What are their current strategies?
Chapter 2
What has previously worked? Why or why not?
COMMUNICATION
What is the impact of anxiety?
Use the space below for your thoughts:
PLAN: Planning a new way of doing things and describing the steps involved. Consider: When to try the new thing? Is it a good time? What obstacles are there? How can you work as a team? DO: Remember, things may not work out straight away and some tweaking may be required. It may not go right initially but this is okay, whatever the outcome is it can be reflected on and learned from. REVIEW AGAIN
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Chapter 3
CHANGE AND MOTIVATION Chapter summary Even small change can be difficult for those with ASC. Difficulties with planning, being able to predict the future and people’s behaviour and coping with sensory environments all make coping with change difficult. Having written or visual plans of what change will take place and giving these in advance can really help. Having ‘Plan B’s’ for unexpected change and practising coping with change in a positive way can also help.
Theory Coping with change can be difficult for everyone, however for autistic individuals even small change can be very stressful and even viewed as catastrophic. In this chapter we are going to look at why change is difficult for autistic individuals, and explore strategies that can help you to support your loved one in managing change.
Why is change difficult? Autistic individuals can find it difficult to think flexibly. This means they can become highly focused on certain tasks, which, although a useful can make it harder to think through multiple plans, consider alternative ideas and hold several possible plans at one time. It can be helpful to think of an autistic person’s ways of processing information like a train track with only one set of rails. The train can race down the track quickly and efficiently however, if something blocks the rail, there
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isn’t an alternative set of tracks to switch to and so the train comes to a shuddering halt. Consequently trying to predict what change might happen and problem solving on-the-go is difficult. In addition, autistic individuals can find thinking in abstract ways harder. Concepts like ‘the future’ that aren’t concrete and definite are therefore difficult to understand. Individuals can also struggle with generalising information they have learnt from past experiences and applying it to new situations. This all means that can be difficult to predict what possible changes might occur and to think through how to cope with them. For example even if they have previously had to take the bus to work when there were rail works at their usual station, they may not be able to generalise this learning in the moment when they arrive at the station to find an accident has meant all the trains are cancelled. They literally can not think what to do and start to feel very stressed and overwhelmed. Finding it difficult to predict the future and lacking the confidence that whatever happens can be solved means the idea of change becomes even more stressful. Autistic individuals can also struggle with executive functioning (the organisation and planning part of brain processing). This means that it is difficult to break down tasks into chunks and work through what to do, how and in what order. Sequencing and chunking tasks like this is essential in coping with even simple tasks such as making a cup of tea. To make a cup of tea correctly we need to make sure we turn the kettle on before pouring the water into the cup, or the tea will not taste good! Struggling to sequence and plan means it is even harder to problem solve when a change occurs. Change and new tasks can feel like a huge unknown mountain, with no sense of how to break down the issue into manageable chunks. The difficulties with predicting change are exacerbated by the fact many autistic individuals struggle with Theory of Mind (understanding things from another person’s point of view). Consequently, it can be really harder to predict how other people will behave or react. Using the example of a train being
cancelled, they may not be able to guess that if they are late in to work their manager would worry about them and therefore it would be a good idea to call in to explain the situation. In addition sensory issues mean that coping with the physical environment of a new or changed situation is difficult. If individuals are experiencing hyper-sensitivity due to a new or changed situation it can be even harder for them to think clearly, making coping and communication more stressful. Difficulties in flexibility of thought, planning and sequencing; predicting the future and Theory of Mind difficulties all lead to a feeling of the world and people as being chaotic, confusing and unpredictable, further increasing the need for consistency.
Why is motivation difficult? The difficulties autistic individuals have with change and new situations can also mean that being motivated to do new things or regular tasks can be difficult. Difficulties with executive functioning mean that trying to figure out how to initiate, sequence and complete tasks can be very difficult. Any task can feel like a big mountain that is impossible to break down; the task feels insurmountable and so individuals can get stuck in inaction. This could be interpreted as laziness, when in fact it maybe that they simply do not know what to do and where to start. This can happen with apparently straight forward tasks such as making a meal or going shopping. An individual might be intellectually extremely bright and able to easily do complex computer programmes and so it seems even more likely that they are perceived as ‘just lazy’. Individuals with autism may also have problems with memory, particularly verbal memory, and this can mean that it is hard for individuals to remember what
the task is. For example you ask someone to go to the shops to get milk, cheese and eggs. By the time they have left the room they have forgotten which items you asked for. Further, difficulties with abstract thought mean understanding a reward that may only come a long time in the future can be very difficult. For example, that learning to do chores as an adolescent will help them to be independent in years to come. Understanding time, an abstract concept, can also be difficult, which can make it harder to do things ‘on time’, leading to the appearance of lack of care or motivation. The above difficulties often lead to increased anxiety in addition to the anxiety caused by change and the unknown means that motivation to try out something new may be even further reduced. Due to difficulties in generalising skills, the autistic person may have difficulty applying a well-known skill in different environments. This can mean that they may struggle with a routine task, which may be interpreted as laziness or lack of motivation. Difficulties with Theory of Mind (taking perspective) may mean that they are not aware why a task might be important. For example, making the effort to say hello to guests coming round to the house, instead staying in their room all day. This may seem like laziness, and self-interest, however it may be that they do not realise that this social etiquette is important to others and therefore lack motivation to do it. Explaining what someone else is thinking, for example, that the visitors are looking forward to seeing them, and the social rules (that it is socially expected that you will at least say a quick hello) may help.
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They also may struggle to see the ‘bigger picture’ in terms of why a task is important. This is due to difficulties with central coherence, which is a part of the way we process information that helps us to take a step back and see things as a whole.
Strategies and tools for change When thinking about how to help the individual with ASC to manage change it is useful to think about the ‘Review, Plan, Do, Review’ model; this can also be used collaboratively between you and the autistic individual. REVIEW:
Think about change Use the questions below to help you think about how your loved one copes with change: What changes does you loved one struggle with (environment, routine, new situations, big and small, life changes - ageing)? What behaviours do they exhibit when they are experiencing change? What do they say? Are you aware of anxiety or anger? Has anything helped them in the past in terms of preparing for or coping with change? Have there been changes they have coped with well? PLAN:
Strategies that can help managing change Plan for the changes you know are going to happen (known changes) and develop general strategies for the unknown changes.
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Planning for known changes It is generally really helpful to prepare for the change by giving as much information in advance as possible; this is linked to the difficulties in Executive Functioning we talked about before (the brain’s planning and ‘Personal Assistant’ function). Explaining exactly what the change is, how it will affect them and what they can do to manage this. It is very useful to give this in a written or visual form as most autistic individuals find it hard to process and remember verbal information. This could be a written statement of exactly what will happen, photographs, or cartoons/ drawings, even a video, or a combination of these things. Think about the preferred mode of communication that helps in processing and understanding information. If you are not sure you can ask them or try out different methods. For example having photographs of where you will be going on holiday, the hotel and the rooms (Google images and Google maps can be a great resource!). Be as specific as possible, including the sequence of events; for example if going on a new train trip be clear what time you will leave, which train station you will go to and at what time, where to sit whilst waiting for the train; what to do when arriving at the station at the destination. It is not unusual for individuals with autism to repeatedly ask about changes, this is a consequence of the anxiety they are experiencing because of the change and repeatedly hearing what the plan is can feel reassuring. Having this information written down also means that your loved one does not have to repeatedly ask you for this information, and you can encourage them to look at the information as a way of promoting independence and anxiety management techniques. However, for some autistic individuals having lots of information and time for preparation can lead to increased anxiety and so it may be better to only give a short warning of impending change. For example on the morning of the change you may explain what has happened and what the new plan will be.
It is also helpful to work out what they can do to manage any anxiety they might experience during this change. For example reminding them about using ear plugs, or sensory tools, talking about where or how to get help.
Planning for unknown changes Unknown changes are stressful for everyone and it is impossible to eliminate these completely. However it can be helpful to talk about this reality with your loved one, and to explain that although we cannot stop all change from happening we can develop ways of coping that mean it is possible to manage the changes as they happen. For example, after an unknown change has , you could praise them for getting through this and discuss together what worked well. Discussions like this can help promote resilience to the changes that will occur in life and build confidence and problem-solving techniques. Initially this is something that you and others can support and guide them through, but for some individuals they will be able to start feeling more confident in thinking through what worked well and what could help on their own. It can also be helpful to share the things that you find challenging in terms of change, and to highlight that we all find such things difficult and it is understandable that they find these things hard.
can arise with changes and unstructured time. Social Stories: Social stories are a way of explaining what is likely to happen and give suggestions on how to manage the new situation. Social stories are step by step guides that describe the new situation and suggest ways of managing the new situation. Social Stories can be done in a number of formats, such as writing, symbols and pictures etc. This could be just writing, or something with picture either as well as, or instead of text. Chill Out Box: Have a box with things to help with change, for example sensory toys, iPod and favourite music, or a list of coping strategies. At the back of this pack you will find examples and blank templates for social stories and planners. DO:
Putting into action strategies for managing change Use the following list of questions to think about, select and implement new techniques for managing change.
Practical Tools for managing change
When are you going to do this new thing, is it a good time?
Planners:
Where is it going to happen?
Planners can be a helpful way of conveying information about change. You can adapt these to what works best for your loved one, for example how much information you include and whether you use pictures/photos. If they generally use a planner you can then visually demonstrate when a change has taken place and what they can do to cope. For example, crossing out ‘social group’ when an activity has been cancelled and writing in ‘going to the cinema’ is a clear way of communicating what change has occurred, and also reassuring them that an alternative plan is in place to minimise the anxiety that
What obstacles are there? How can you work as a team? Remember, that it may not go right initially but this is OK. Whatever the outcome this can be reflected on and learned from. REVIEW AGAIN: It is useful to review how the interventions worked or didn’t work; think about what you have learned about your loved one and their anxiety and talk about what you would want to do in the future. If it is possible reviewing
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this with your loved one is a great way of developing their self-awareness and it is an opportunity to praise them and build up confidence and resilience.
Strategies and tools for motivation REVIEW:
Thinking about motivation Are there particular tasks they seem to struggle with? Are there ones that are done without being asked? Do they struggle to remember tasks, or need to be reminded? Do they get anxious or angry when you ask them to do particular things? What is the best way of communicating that something needs to be done? For example a note, email, information in advance? PLAN:
Strategies for increasing motivation Clearly outline what the task is and how to do it. Giving this information in advance will give them chance to process what is being asked of them. Remember that autistic individuals struggle to problem solve, breakdown and plan tasks. Create visual plans and prompts. You can use images, words, photographs or social stories. Think about what format of information works best for them. Use written information and reminders to help them remember what the task is and how and when to do it (e.g. sticky notes, reminders on phones). You may well have to give these instructions and reminders every time, and particularly if there is a small change to the environment or the task,
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as autistic individuals struggle to generalise prior information to new situations. Clearly outline the reasons for the task. As we mentioned previously autistic individuals can struggle understanding consequences and thinking through why a task might be important from someone else’s point of view. It is therefore helpful to explicitly explain these reasons. For example, explaining that keeping the house clean is important because of germs. If the goal is linked to future development it can be helpful to breakdown in a clear, step by step way, how what they are doing at the moment will help them in the future. For example using a flow chart to show how gradually learning independent skills like cooking, and cleaning will help when they move to university or into a house of their own. Think about tangible rewards that can encourage motivation. All of us use rewards to motivate us to do things we find hard; like a favourite treat at the end of a hard day. If it is something that does not have value to the individual or the value is abstract or in the future, a concrete reward soon after the task can be really helpful. For example, if they struggle with social situations and you have asked them to take part in a family event, explaining why this is important to you and organising to go to one of their favourite films as a thank you for their help might work well. Praising and thanking them for what they have done is key and then using their interests can be really helpful. Consider the anxiety and stress that the task may create and help them to prepare for this. Prepare and repair: It may be useful (particularly if the task is new) to have a chilling time before and after.
DO:
Putting strategies for managing motivation into action Use the following list of questions to think about, select and implement new techniques for managing change. When are you going to do this new thing, is it a good time? Where is it going to happen? What obstacles are there? How can you work as a team? Remember that it may not go right initially but this is OK. Whatever the outcome, this can be reflected on and learn from. REVIEW AGAIN: It is useful to review how the interventions worked or didn’t work, thinking about what you have learnt about your loved one and their anxiety and talking about what you would want to do in the future. If it is possible reviewing this with your loved one is a great way of developing their self-awareness and it is an opportunity to praise them and build up confidence and resilience.
Planning for specific transitions All changes can be difficult for individuals with autism, and having to navigate major transitions in life can be particularly challenging. Moving from school to college or university; moving home or out of the family home and beginning or changing employment, can all be hard. There are some general strategies that can be helpful when dealing with such transitions. Where possible it is best to have your loved one at the centre of the transition. Help them to be as aware as possible about what and why something is happening and work collaboratively as this promotes
independence and leads to a greater sense of control over the change. Speak to your loved one to explore worries and understanding of the impending transition. This can be done as creatively as needed. Think about what type of communication works best for them: do they prefer looking at photographs or having information clearly written down to review as they need? It can be helpful to take your time in exploring these preferences with your loved one, giving them time to think about and process the information. This may include visiting different colleges or properties, or looking up information on-line. Autistic individuals can struggle with having to choose between multiple options. It is generally useful to have explored the options yourself first and eliminated those which are not possible. This way you can reduce the amount of information that needs to be processed. When you have collaboratively decided which option is the best to move forward with, focus on planning for this transition. It is helpful to create planners or timetables, breaking down the change into steps, dates and times. For example, shopping for cooking equipment before starting university or visiting the student support services. You can create a folder (paper or virtual folder) with information, photographs, names and contact details of key support individuals. It also can be helpful to think about what difficulties your loved one may face and how they can tackle these. This includes what techniques to use if they get anxious or stressed, how they can be reminded (or remember) to use these; what they can do if they need help or advice. This information can be summarised and kept in the folder and may include social stories. For most autistic people knowing about the change in advance and having support to break down what will happen and when is useful. However for some individuals knowing this information is anxiety provoking. If this is the case for your loved one, think about whether there are any aspects of the process they could be involved in, or whether you and others will organise the planning and decision
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making before informing them of the change in a positive way shortly before the change occurs. GETTING INFORMED: Know your rights in terms of what support you and your loved one are entitled to. Benefits advice: You can access information about what benefits you and your loved one are entitled to from the Citizen Advice Bureau or https://www.gov.uk Social Services support: All adults are entitled to an Assessment of Need to ascertain whether they can access funded support. Contact your local adult social care team to organise this assessment. Employment Support: Individuals with a disability (including autism) are entitled to reasonable adjustments to support their employment. Information on this can be accessed from https://www.gov. uk. Aldingbourne Trust runs WorkAid, a project in West Sussex supporting those with autism and/or learning disabilities find employment and training. Student Support: Higher and further education offers support, including funding, for those with a disability. Information can be found on the webpages of the educational institution. TRANSITION SUPPORT FOR UNDER 18s: From Year 9 a transition plan, which may be part of an Education and Health Care Plan (EHCP) should be in place; this should be flexible and dynamic. This will involve support from schools, health and social care. Some funding is commissioned directly from the local authority and other funding is done through self-
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directed support money where the family or individual deal directly with the money from the local authority. To find out more information about whether you would be entitled to this support you can contact your Local Education Authority and Transition Team. If they have a personal budget or funding and you have to present to a panel it can be helpful to have three options and clear reasons (pros and cons) of what you believe would be appropriate. HIGHER AND FURTHER EDUCATION: Schools, colleges and universities should have support for students with additional needs and will be able to talk you through what they can provide. Students going to higher and further education maybe able to access the Disabled Students’ Allowance (DSA). This is for students studying advanced level courses who are assessed as requiring additional support and resources which are not paid for by the academic institution. Information on FE and HE support: https://www.autism.org.uk/18333 and on https://www.gov.uk/furthereducation-courses EMPLOYMENT: WorkAid supports adults with learning disabilities get training, volunteering and employment. https://www.aldingbournetrust. org/supported-employment.html (01243 546035) Job Centres: Most job centres have a Disability Employment Advisor, who can provide useful information and support. If your loved one is currently in employment, seeking support from
the Occupational Health Team or Human Resources Centre can be helpful. HOUSING TRANSITIONS: Types of supported housing services: Residential Care: 24 hour support, through social care funding.
Chapter 3
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Use the space below for your thoughts:
Supported Living: support can vary from 2-24 hours, accessed through social care funding. Outreach Support: support workers that come to the home or help access the community. Support can be any number of hours and can be funded through social care support or privately. If they have a personal budget or funding and you have to present to a panel it can be helpful to have three options and clear reasons (pros and cons) of what you believe would be appropriate. USEFUL RESOURCES: The Housing and Support Alliance: http://www.housingandsupport.org. uk/home (0300 201 0455) Saxon Weald West Sussex Housing Association: https://www. saxonweald.com Golden Lane Housing for individuals with learning disabilities have helpful information for buying your own property: https://www.glh.org. uk Mencap have information if you want to buy a house for someone: https://www.mencap.org.uk
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Chapter 4
RELATIONSHIPS Chapter summary Individuals with ASC have difficulties understanding social rules, nonverbal and verbal communication. They also find it hard to understand someone else’s point of view. This can make making and maintaining friendships and relationships difficult. Using strategies to explain what the social rules are, what is the appropriate way to behave in an explicit way can be helpful.
Theory As fundamental as relationships are for many human beings, they can be a fraught area for many individuals with ASC. Many are caught between an instinctive need to have relationships and difficulty in making and maintaining them, as well as understanding the complexities of different relationships. Relationships need mutual understanding to grow and a complex ability to recognise when someone wants to get to know someone else better and knowledge about how to develop relationships. Neurotypical children learn about relationships from infancy as they are driven to look at social behaviours and later try them out and explore them through play with peers and pretend play. However, children on the autism spectrum are often disadvantaged due to a less welldeveloped social instinct and difficulties with verbal and non-verbal communication. As they become more aware of social pressures around friendships and relationships, their social development is often relatively immature in comparison to their peers. This means they may get along better with
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much younger individuals or adults, who scaffold and complete missing aspects of social development. Nonetheless, socialising will require additional mental effort and the person on the autism spectrum may receive more negative than positive social feedback, which in turn may decrease motivation to socialise. Further, relationships require an understanding of the other person, their thoughts and feelings, which allows us to anticipate and respond to others on an emotional level (Theory of Mind). Difficulties around this often lead to misunderstandings and difficulties seemingly at odds given someone’s chronological age. Many individuals with ASC therefore attempt to overcome these difficulties by focusing on creating and applying social rules, which may be rigid, inflexible and inappropriate. Even if a person has a good grasp of social rules, they may find it difficult to notice and understand complex social cues which would be helpful in selecting an appropriate social response.
Types of relationships It is often helpful to think about and clarify relationships; to make explicit what neurotypicals appear to take for granted. We need to support autistic individuals to develop an understanding around types of relationships. For example, is the relationship a personal or professional one? Professional relationships are often defined by clear roles and on a needs basis. For example, we may get on really well with our GP, but their purpose is to offer support and advice around physical ailments. We generally don’t make appointments to have a cup of tea and a biscuit with our GP. It is helpful to use words and describe the features of your relationships to help your loved one to understand the differences between different people we engage with. We can refer to people as acquaintances, activity partners (someone we do a specific activity/interest with) or friends. For each type we can be explicit about how we categorise and define a social relationship based on
knowledge about the other person and what types of information we may share and would expect to be reciprocated in return. Similarly, close or best friends and intimate friends are the next levels of friendship development. It is often during our teenage years that we begin to explore and practice being in these types of relationships. Family has a unique place for many of us in terms of relationships; family is more often based on proximity and genetics rather than choice, and roles can either be rigidly or poorly defined. Family members and parents are rarely friends as such, but could be almost viewed through the ‘professional’ relationship lens, certainly when our children are children: we have a job to do in raising our children; friendship and mutual regard may take years to develop or may never develop at all.
Strategies for developing relationships In supporting individuals with ASC we may often encourage our loved ones to ‘get out and meet people’, but we rarely give helpful tips around how to do this, nor do we explicitly model and explain what we are doing. A very basic skill is being able to introduce yourself and knowing what to look for in terms of reciprocity: does the person smile or look away? Do they tell us their name? How do we then move from greeting someone every day and knowing their name (acquaintance) to activity partner or friend? The foundation would be a shared interest or activity. Through small talk we develop knowledge of the other person and we start to impart some basic personal information to see whether this is reciprocated. If there is reciprocity we may be able to propose and move beyond a shared activity and common interest. For example: There is someone you regularly see at the gym. You greet each other and exchange pleasantries. You/ They ask if you would like to join them for a drink after the gym.
Small talk For many individuals with ASC small talk is an illogical, pointless and confusing task. However, if we can explain the purpose of small talk in relation to developing friendships, as well as practicing the art of small talk, we may not only increase their understanding, but also give purpose to this rather strange activity. The purpose of small talk is to find out about the other person on a superficial level. It’s like a dance to test out what the person likes or does not like; what they think about things in general. It’s a process of ‘alignment’ where you find out if they are similar to you, interesting, someone you would like to get to know better. A useful framework for small talk is the WORM: Weather Occupation Recreation Media It can be helpful to develop a repertoire of WORM questions and to practice small talk at home. For example, when one of you comes home at the end of the day. However, not everyone wants to be friends with someone. Our loved ones will have experienced a great deal of social rejection in their life. This decreases motivation: why should I put myself through this experience again? This means that we have to work together to prepare for negative situations: What if they do not want to be friends? How can we tell this? What signs do we need to look out for? How do we support our loved one when a friendship turns into obsession? How can we teach that it is OK to end friendships and that many friendships do not last forever? We can do this by communicating clearly and effectively and not relying on non-verbal communication: Say what you mean, be positive and reassure. Explain and give time to process. Tell them what the ‘signs’ are and what to look out for to evidence your
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assertions. Remember to be direct and clear, but also gentle: why use a sledgehammer when a little nudge will do?
what you think has been said. Ask direct, clear and specific questions (what, where, when, why, how etc).
Understanding limits
Conversation and relationship killers
No matter how much we think our loved ones should have and want friendships and relationships, we must remember that they are different. Social time and environments may need limits; allocate time, stick to boundaries and plan in down-time afterwards. Don’t become the Interrogator to try and find out how a social event went. Chances are they are tired and have not yet processed everything that has happened. There is a right place and right time to do this and it may not be right now on their return from college, work or a date. Be mindful of conversation styles (sometimes written is better etc.).
As parents, carers and partners we want the best for our children and loved ones. However, sometimes we may go about things in a slightly less helpful way. Remember, we need to model behaviours and that includes communicating and managing our relationship with our loved one. Often we first need to become aware of the things we may model and that these things are not helpful or even at odds with how we expect our loved one to behave. So, when having a conversation don’t become a Conversation or Relationship Killer (i.e. Inquisitor, Interrupter, Mr/ Mrs Negative or Always Right, Nonlistener or Topic Changer). Mirror and model, take turns and reciprocate. And remember: we cannot change what we do not know. Once we know what we may need to change, we will need support, reassurance and feedback to help us change.
Remember that your loved one may have reduced motivation for relationships and that their social need may well be sated by different types of socialising (i.e. online).
Trust and vulnerability Our loved ones are vulnerable as they are not as skilled as their non-autistic peers due to a lack of opportunity, reduced motivation and negative experiences. You may need to explain what friends should and should not do; you may need to be explicit about the pros and cons of intimate relationships, which includes consent, privacy and contraception. If you feel you cannot do this, you may need to signpost your loved one to someone who can. Help them to keep safe by being clear about rules and boundaries and the consequences. It is better to make an informed choice and model the behaviours you want to develop.
Modelling Show you are listening by nodding, making sounds, asking questions. You do not need to make eye-contact to show you are listening but you may need to explain this (be explicit). Acknowledge what the other person is saying and check for understanding by summarising
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Review, plan and do When thinking about how to help the individual with ASC to manage relationships it is useful to think about the ‘Review, Plan, Do, Review’ model: REVIEW: Think about the individual and difficulties they have with relationships. What relationships do they have now? What difficulties in understanding relationships do they have? Do they want to develop the relationships they have or start new relationships, or are there problems within certain relationships at the moment?
PLAN: Go through the list of strategies and choose one or two to try: What strategies might help with these difficulties?
Chapter 4
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Use the space below for your thoughts:
What strengths do they have that you could build on? DO: Think about specifically how and when you will put the strategy into practice. When are you going to do this new thing, is it a good time? Where is it going to happen? What obstacles are there? How can you working as a team? Remember that it may not go right initially but this is OK. Whatever the outcome, this can be reflected on and learn from. REVIEW AGAIN: It is useful to review how the interventions worked or didn’t work, thinking about what you have learnt about your loved one and their anxiety and talking about what you would want to do in the future. If it is possible reviewing this with your loved one is a great way of developing their self-awareness and it is an opportunity to praise them and build up confidence and resilience.
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Chapter 5
ANXIETY AND MENTAL HEALTH Chapter summary Individuals with ASC often experience ongoing high levels of anxiety due to managing their neurological and behavioural differences. Differences in social communication, social interaction, imagination and cognitive processing, and sensory experiences can all lead to higher levels of stress and anxiety. Individuals with ASC can struggle to recognise and understand their anxiety. Planning, visual information and sensory strategies, among other techniques, can help individuals coping with anxiety.
Theory Individuals with autism spectrum conditions are more vulnerable to mental illness than the general population. Some of the most common problems are anxiety, depression and obsessive-compulsive disorder (OCD). This is in addition to overlapping neurodevelopmental conditions, such as ADHD/ ADD and tic disorders. Mental health problems can often go undiagnosed or misdiagnosed. The difficulties autistic individuals have with understanding and expressing their feelings and needs mean that it can be very hard for them to recognise if they are experiencing a mental health problem and communicate this to others. In addition, mental health disorders can present differently in autistic individuals or overlap with characteristic features of autism spectrum conditions, meaning
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that professionals may not pick up on the difficulties a person is experiencing. For example, an autistic person’s routines may increase or they may become more averse to change as a consequence of depression or anxiety. This chapter will focus on anxiety as it is one of the most common difficulties autistic individuals cope with and can have a huge impact on day to day life and relationships
What is anxiety? Anxiety is an important emotional state, and we will all feel worry, fear or unease at some point in our lives. It forms part of the body’s response to threat, this is sometimes called the ‘Fight and Flight response’. It is our way of noticing and reacting to dangers in our environment. For example, if we see a car speeding towards us we will feel fear, our heart rate and breathing will increase, blood will pump to our limbs, all to help us move quickly to get out the way of the vehicle. Reacting in such a way is essential for our survival. However, anxiety can become a problem when we are experiencing it all the time, or when the anxiety we are feeling is out of proportion to the threat. Anxiety is a general term, but there are several types of anxiety someone could be diagnosed with: Health anxiety: is characterised by being unduly worried about health, constantly checking for signs of ill health, avoiding situations in order to prevent imagined illness. Panic disorder: is characterised by recurrent panic attacks (physical symptoms of anxiety such as increased heart rate). The affected person becomes fearful of these attacks and takes measures to try and avoid them from happening. Agoraphobia: is the terms to describe when an individual is experiencing panic attacks linked to particular environments and becomes avoidant of these situations.
Social anxiety: is anxiety linked to speaking or being with other people. Affected individuals will particularly worry that they will embarrass themselves and feel certain that people are viewing them negatively in all social situations. Generalised anxiety disorder (GAD): is characterised by individual excessively worrying about many different things. For more information about anxiety disorders see: https://www.nhs.uk A useful way of thinking about anxiety is to break it down into the various ways it affects us: feelings (emotions), physical symptoms, behaviour and thought. This model is often used in Cognitive Behavioural Therapy (CBT), which is part of the NHS NICE guidelines for treating anxiety.
Behaviour: this often involves going to great lengths to avoid situations that you fear, for example avoiding going in tubes, buses, trains because you have had a panic attack on a train before. Or this could involve ‘checking behaviours’, for example, checking that you have locked the front door repeatedly and going back again to check the door is locked. There may also be a general sense of restlessness and agitation. Physical symptoms: increase heart rate, fast breathing, blood going to your limbs, sweating, flushed face, tingling hands and feet; feeling sick, needing the toilet, feeling like you cannot breathe, feeling faint. In addition to the symptoms above, autistic individuals may also experience additional symptoms associated with their Autism: Feelings: anger or they may be unaware of their emotions. Thoughts: greater difficultly with thinking flexibly, and more obsessive, repetitive anxious thoughts. For example, they may focus even more on their areas of interest and become more distressed when something inhibits this; or they may get really stuck on anxious thoughts.
Here are some examples of how anxiety affects each of these areas: Feelings (emotions): fear, worry, depression. Thoughts: worrying about what may happen, especially ‘what if’ thoughts. For example: ‘What if they have been in an accident?’ ‘What if it rains?”. This also includes catastrophic thinking, such as worrying that if you have made a spelling error on a report for work and thinking that this will mean you will lose your job and then your income, and then your house and your partner will leave you.
Behaviour: increased routines and rituals, increased stereotyped behaviours (e.g. hand flapping, pacing). Some may get caught up in these physical repetitive behaviours, others may get caught up in their thoughts, or both. Others may ask repetitive questions and repeatedly seek reassurance.
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Physical symptoms: They may become more hypersensitive or experience differing sensory experiences to normal. For example, they may be even more aware and distressed by noise or lights, or even sensory stimuli that normally do not bother them.
Anxiety and autism Anxiety and autism interact. The differences in how a person with Autism relates to and experiences the world can mean that everyday tasks can be anxiety-provoking. Also, their autism can mean issues that cause us all anxiety, such as moving house, can be even more difficult to cope with. The diagram below shows how autistic features impact on such everyday experiences (i.e. interacting with others):
vulnerability to developing additional mental health problems, such as psychosis. For more information on psychosis go to: https://www. nhs.uk/conditions/psychosis
Communication, autism and anxiety Both verbal and non-verbal communication are difficult for autistic individuals. This includes finding it hard to understand implied meaning but also expressing themselves in a way that is understood by others. Due to difficulties in expressing their emotions it can be harder for the autistic individual to get others to understand how they are feeling when they are stressed, what they are anxious about and for them to get help. Consequently, anxiety and stress can perpetuate and ‘bottle up’ making meltdowns or shut downs more likely. It also means that it can be difficult for autistic individuals to get a diagnosis of an anxiety disorder, which means they may not be able to access the specialist help they need.
Relationships, autism and anxiety Autistic individuals have difficulties intuitively understanding the rules around interaction and how to manage relationships when they become difficult for them.
When trying to support an autistic loved one, it is helpful to look at how their autism impacts on and may increase their experiences of anxiety. In the next section we will explore how differences in communication, managing relationships, imagination and thinking, sensory issues; and differences in planning and organising, can increase anxiety. This also means that autistic individuals may experience ongoing or continuous anxiety and physical arousal. Medication can be helpful to manage the physical symptoms of anxiety, but additional strategies are likely to be needed to manage anxiety as a whole. Also, it is important to bear in mind that constant anxiety can increase
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This means that social situations are often anxiety provoking. In particular, individuals often find meeting new people or groups of people hard, because it is even more challenging to understand what is going on. This can make autistic individuals increasingly anxious about the idea of interacting with anyone, and very focused on how stressful social situations are for them. Consequently, many autistic people would meet the diagnostic criteria for Social Anxiety Disorder explained above. Not only do the difficulties in understanding relationships mean that socialising causes anxiety, but it also increases the likelihood that they will be isolated which also exacerbates anxiety and depression. Autistic individuals are often caught between knowing that they struggle to understand relationships in ways others do not, and yet not knowing how to cope with this, which can
lead to low self-esteem and social isolation, both of which also exacerbate anxiety and depression. Difficulties in understanding social rules and relationships can also make autistic individuals more vulnerable. For example, not understanding if someone is making a joke at their expense, or just using them for their knowledge or resources, rather than actually valuing them as friends. In more extreme situations autistic individuals may be at risk of abuse, because of their lack of awareness.
Flexible thinking, autism and anxiety Understanding relationships is challenging for autistic individuals and this is made even harder because of difficulties in Theory of Mind and flexible thinking (taking perspective). This is the ability to see a situation from someone else’s point of view, to be able to ‘get into their shoes’. As a result it can be difficult to understand how someone might react in a situation, or what would be the best way to behave. This also means that people are unpredictable and it becomes difficult to try to predict how others will respond. One individual described how dealing with social situations can be like ‘walking into a room and a table suddenly turning into a penguin’. Understandably this makes socialising, or any interaction with others even more anxiety provoking. In addition to predicting other people’s thinking and behaviour it can also be difficult to predict the future in terms of consequences. For some this might even mean that predicting what might be behind a door marked ‘kitchen’ might be challenging. This is further complicated by difficulties in Executive Functioning, the ability to plan and sequence, which then also impacts on decision-making. This means that coping with everyday tasks like planning the day, sorting out a shopping list and/ or coping with a broken computer, all become hugely stressful. The difficulties in these areas mean that the general stresses that exist for all of us can become overwhelming and unbearable. Difficulties in planning, organisation and predicting the future also
mean that coping with change is very stressful. Even small changes, like having to take a different route to work or college, can feel overwhelming and chaotic. One way in which autistic people cope with this chaos is to draw on and rely on routines and specific areas of interest for consistency; a way to bring order and predictability to chaos and create stability. If an individual is experiencing stressful situations or feeling anxious the desire (and need) for consistency will increase, and therefore it is common for people to be more focused on interests and routines when they are stressed.
Sensory differences, autism and anxiety Differences in sensory perception (i.e. hyperor hypo-sensitivity) can make environments very stressful and even physically painful. For example, going to a brightly-lit and noisy supermarket for someone who is hypersensitive can be painful and distressing. This means that even the idea of shopping can lead to lots of anxiety, and just having to get food for the week becomes very stressful. In addition, hyper- or hypo-sensitivity may increase or be exacerbated by stress and anxiety.
Recognising anxiety Autistic individuals can find it hard to recognise emotions in others and themselves. This means that they may not be aware of any emotional change when they are becoming stressed. Thinking back to the CBT model of thoughts, feelings, physical reactions and behaviour, autistic people may recognise that they are avoiding situations or that their breathing has increased, but may not relate this to anxiety or be able to communicate the emotion. Some autistic individuals describe having a vague unpleasant inner experience, but this is not interpreted in terms of emotion and therefore the experience is not linked to words like anxiety, happy, sad. For some autistic people words like ‘happy’ are abstract and don’t evoke the same personal internal
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emotional response that they would for others. For example, if asked to think of the last time you were really excited, you may be able to think of a specific time, the situation or cause, and even to have a sense of how you felt; you may even find that you start to smile or your heart rate increases as you think of this. These emotional memories are not necessarily experienced in the same way by autistic individuals. However, many autistic people can find it helpful to work through with support what might be causing stress and how they feel about it. For example they may not feel anxious, but recognise that they are more fixated on their interests and, through talking with someone they know, they may be able to identify that they have had a lot of change to deal with at work; or they have been feeling very hot and sweaty, and the vague unpleasant inner experience at the end of the day all points to a higher level of anxiety or stress. The difficulties in understanding emotions also means that for some people it feels like anxiety just comes out of nowhere, or they will experience unexplained physical symptoms, and this can be worrying in itself.
Higher base-line level of anxiety All of the differences and difficulties we have talked about mean that coping with everyday life can be very stressful for autistic individuals, and consequently many people will describe that they experience anxiety all the time, and they may find it hard to think of a time when they were not anxious. It can be helpful to think of this as their ‘base line level of anxiety’ and that the baseline levels of anxiety can be much higher for autistic individuals.
Having a higher baseline level of anxiety is difficult to cope with, but it also means that it may only take a small problem for a person to experience extremely high levels
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of anxiety. This is one reason why seemingly small changes (i.e. someone rearranging their desk) may leave an autistic person totally overwhelmed.
Meltdowns, shut-downs and anxiety For autistic individuals anxiety can lead to ‘meltdowns’ and ‘shut-downs’; both can be the result of anxiety. A meltdown is an outward consequence of anxiety: the person may be unable to control their behaviour, may swear, scream and lash out, without being able to stop themselves. They may find it very difficult to understand what others are saying to them, to understand what is happening in a situation and to think clearly. A shut-down is often described as feeling totally overloaded and overwhelmed. Many people will try to withdraw away from people to a safe or quiet place. They may find it very hard to communicate or do anything, some people find they become mute for a period of time. Again they generally find it very difficult to understand what is happening around them and to think clearly or process any information at all. It can also be useful to think of anxiety in two ways: the everyday stresses that keep that baseline level of anxiety higher for autistic people, and acute anxiety that can be triggered by particular situations or challenges.
Everyday stress Constant high levels of anxiety. Linked to difficulties of ASD. Linked to sensory environment. Managed through routine strategies and healthy living.
Acute anxiety Periods of intense anxiety. Specific triggers (e.g. change). Often results in meltdowns or shut-downs. Managed through healthy routine strategies AND specific interventions.
Strategies and tools for managing anxiety REVIEW:
Think about anxiety It is helpful to increase awareness of what anxiety is and how it affects us. Explaining how anxiety is part of the Fight and Flight process and has an impact on how we feel physically, how we behave and think. We have included some links to online resources at the back of this guide that you may find useful. What do they know about anxiety? (do they know when they are anxious, do they know what makes them anxious) Signs: how do you know they are anxious and how do they communicate it? (behaviour, physical symptoms, what do they say) What triggers their anxiety? Think about the different factors in autism, such as change and sensory issues? Remember that usual things like poor sleep/diet/death will also affect them.
What responses makes their anxiety better or worse? (e.g. noise) Autistic individuals can struggle to understand their emotions and sometimes their thoughts. Consequently it can be helpful to start off with observable, tangible and concrete symptoms of anxiety. What have you noticed in the anxious person? Does their skin become flushed, do they pace? Note observable things over a few weeks. You could also try to rate the level of anxiety of a scale of 0 (no anxiety) to 10 (meltdown/ shut-down) over a number of weeks and compare this to activities, demands and changes in the environment. Some autistic people can find it hard to rate how anxious they feel and so using a visual representation i.e. a thermometer can be useful; or, you could draw on the person’s special interest to rate anxiety. For example, different types of dinosaur may represent different levels of anxiety. As you learn more about their anxiety and how it affects your loved one you can gradually fill in a blank CBT model of anxiety. PLAN: STRATEGIES THAT CAN HELP WITH MANAGING ANXIETY
Communication strategies Think about what you already know about how your loved one communicates when they are anxious. It can be helpful to create a language or ‘code’ for them to communicate when they are anxious. For example, identifying that when they are shaking or sweating means that they are starting to feel anxious. You can then use this to help prompt them to use other strategies to reduce this anxiety (e.g. sensory tools). It can also be helpful to routinely talk about emotions. For example, once a week sitting down to briefly review how the week has been and how they are coping. It is important to do this at a time and place when they are as relaxed as possible. It is also important not to pressure them to speak, so outline that this is a time when they can talk if they want to. It may be helpful to link this to any interests they have to encourage them to engage.
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When your loved one is extremely anxious it is helpful to use minimal verbal communication. As we previously mentioned when autistic individuals are extremely stressed they generally find it very difficult to process verbal information. It can also be useful to use visual prompts, cards or gestures instead of talking. For example a ‘Traffic Light System’: green means they are calm and happy to talk and engage; amber means that they are starting to feel anxious and need time on their own; and red means they are extremely stressed and need someone to help them to use sensory tools.
Sensory strategies Sensory overload can increase anxiety, and other sensory experiences are helpful in reducing anxiety. To reduce everyday levels of anxiety it can be helpful to have relaxation time in calming spaces as part of a daily or weekly routine. Think about what environments are most comfortable for them and how to increase experiences of these. It is also helpful to minimise uncomfortable sensations. For example using ear plugs, changing lighting, having rules that others can follow around touch. If you cannot eliminate a distressing sensory sensation having relaxation time before and after (prepare and repair) can be helpful. For example, having half an hour of quiet time before going shopping and then having time in a calm environment with favourite sensory tools (e.g. Lava lamp) afterwards. When your loved one is experiencing acute anxiety it can be helpful to reduce all the sensory stimulation around them, turning off lights, reducing noise or moving them into a quiet room. You can also prepare a Sensory First Aid Kit. This can be kept in one specific place that is easy to reach or is with the person.
Structure strategies Change and a lack of structure can be extremely anxiety provoking for autistic people. Consequently including greater
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structure and planning can be a useful way of reducing anxiety. Think back to your table of what causes most anxiety, is change a factor? Are there particular times or activities when your loved one experiences more anxiety and what is the organisation around these events? To reduce everyday levels of anxiety it can be helpful to use timetables and planners that outline visually what is happening each day or week. You could use a family calendar, (shared) online calendar, Filofax or diary. Think about what information they need and want to know; do you put down times, what the activity is, who will be doing it with them, any specific location or travel details? It is helpful to include times to relax, exercise and use sensory tools within this regular timetable. You can also highlight any changes that have occurred on this planner. If your loved one does not already use a planner or calendar think about how you can encourage and remind them to use this. Reminders on mobile phones, or placing the calendar in a place where they regularly go can also be helpful. Another way of reducing anxiety is to structure the environment, such as creating a specific area for working or relaxing. Creating guidelines and manuals is another way of clarifying expectations and making situations feel less chaotic and unknown. For example, asking for written instructions about duties and timelines at work can be helpful, or outlining who does what in terms of house hold chores. Structure strategies can be very helpful in managing change. It can be useful to think about change in two ways planning when you know a change will occurring and developing general strategies for unplanned changes.
When we can plan Planners, timetables etc. Social Stories (a written story about what will happen). Photos and images (e.g. where you are going). Rewards and relaxation.
Unplanned changes General ‘Chill Out’ strategies. Create specific plan B’s ‘If it rains the plan B is…’. Clear plan on asking for help. Working on problem solving skills. To help cope with acute anxiety it can be helpful to have a planned strategy. For example, talking about what is most useful when they are in meltdown, shut-down or extremely stressed. You can highlight particular sensory techniques that are helpful, a particular place for them to go (bedroom, office). These ideas can then be further clarified by having a short Coping Statement or ‘Social Story’ which describes what they can do when they are extremely stressed, or what you will do to help them. By having this preagreed and in a visual form your loved one will know what to expect when they are extremely stressed and can be assured that you will respond to them in the most helpful way.
Physical and behavioural strategies Finally simple physical and behavioural strategies can be extremely helpful when dealing with every-day and acute anxiety. Exercise can help with managing the physical symptoms of stress and anxiety, like increased heart rate and adrenaline as well as promoting general well-being.
We get key chemicals such as tryptophan, which is essential for creating the ‘happy neurotransmitters/hormones’ like serotonin, from a healthy diet. For example, bananas are a good source of tryptophan. Some autistic people find relaxation and mindfulness helpful. Some autistic individuals can find the idea of relaxing difficult to understand, what does it mean to ‘relax your body’? If your loved one struggles with such ideas it may be that focusing on spending time alone, in nature, or doing exercise or special interests is a more effective way of reducing their anxiety. As well as routinely using the techniques above, when experiencing acute anxiety it can be helpful to direct the person to a safe, quiet environment and allow them time alone. Some individuals find ‘creative destruction’, such as ripping up paper or punching pillows, useful in managing very high levels of stress and anxiety. Such techniques maybe particularly useful if your loved one self-harms or becomes agitated when anxious. Grounding techniques can also be useful. When we experience extreme levels of anxiety we can become understandably focused on the awful feelings in our bodies and emotions. Shifting our attention to focus on feeling of our toes on the floor, or the sensation of our hands gripping a chair, or the feeling of cold water as we wash our hands under the tap, can help to get a bit of distance when the anxiety is at its most intense. It may then be easier to engage in other techniques such as listening to music. Similarly when experiencing acute anxiety a simple breathing technique that helps to regulate breathing and stops hyperventilating can be helpful in managing the intense physical symptoms of anxiety.
Healthy eating is also useful. Anxiety can be triggered by high or low blood sugar level, so eating regularly and in a balanced way can help to maintain an even blood sugar level.
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Good diet and regular eating.
may not be aware that their anxiety is building and increasing. The key is to try and identify what it is that has led to these feelings; often it can be a number of things over time, resulting in ‘the straw that broke the camel’s back’.
Relaxation and mindfulness.
The meltdown
Interests/nature/being alone.
What does the meltdown look like? How long does it last? How long does it take them to recover (it may be that they need 3 days to recover as a meltdown can be so physically draining).
Strategies for general anxiety Exercise.
Strategies for acute anxiety Grounding techniques. Creative destruction. Safe environment/being alone. Simple breathing techniques. DO:
Putting strategies for managing anxiety into action Selecting the right strategy for different levels of anxiety is important. This means that low level anxiety is managed differently to high level and acute anxiety and may prevent anxiety increasing even further. It can be helpful to think of different levels of anxiety in terms of the bubble, the boil and the meltdown.
The bubble This is often the first observable stage of anxiety; anxiety is starting to build. What does the ‘simmering ‘look like? This could be swearing or pacing; what they are doing or not doing? Do you notice any changes in behaviour (e.g. increase in repetitive behaviours)? Any changes in the way the person communicates or physical changes (e.g. sweating, pains, sensory sensitivity)?
The boil Anxiety intensifies and behaviours become more extreme. This can come across as anger, but is a sign of the boiling anxiety that has been building up. What is observable at this stage (behaviour, communication, physical symptoms)? Remember, the autistic person
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Selecting strategies When thinking about anxiety, it is helpful to have strategies in place for each of the stages above, but often it is most useful to be able to either intervene or prompt the person to use strategies at the early stages of anxiety so that a meltdown can be avoided. Sometimes there seems to be little time between the bubble and the meltdown, so using strategies to manage everyday stressors can be very helpful and may prevent anxiety building up in an accumulative way. Useful questions for selecting strategies: When are you going to do this new thing, is it a good time? Where is it going to happen? What obstacles are there? How can you work as a team? Remember that it may not go right initially but this is OK. Whatever the outcome this can be reflected on and learned from. REVIEW AGAIN: As we mentioned right at the beginning it is useful to review how the interventions worked or didn’t work, thinking about what you have learnt about your loved one and their anxiety and talking about what you would want to do in the future. If it is possible, reviewing this with your loved one is a great way of developing their self-awareness and it is an opportunity to praise them and build up confidence and resilience. It is also important
to affirm how difficult it is to do these things. Everyone hates feeling anxious, however the best thing we can do is to gradually challenge ourselves in areas that are not too overwhelming with lots of support and selfcompassion. This review process can also be a chance to change beliefs, for example talking through how they reduced anxiety, even in a little way, is proof that they won’t always be stopped by stress and worry.
Chapter 5
ANXIETY AND MENTAL HEALTH
Use the space below for your thoughts:
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Chapter 6
SENSORY DIFFERENCES Chapter summary Individuals with ASC often have differences in sensory sensitivity and sensory perception. This can affect taste, touch, sight, smell, and bodily awareness. These differences can make dealing with everyday environments stressful and overwhelming. Using strategies to reduce overwhelming stimuli, or providing the opportunity to experience positive sensory experiences, can be very helpful.
Theory Autistic individuals may be hyper- or hyposensitive. This means that they may be over (hyper) or under (hypo) sensitive to sensory stimuli like light, sound, taste, touch, temperature and pain. For example, they may find that the feeling of clothing is extremely uncomfortable and even painful, or that certain lights are overwhelming. They can be both hyper- and hypo-sensitive, and the level of their sensitivity can vary. Sensory sensitivity can be affected by hormones, illness and can fluctuate over time. In particular, the more stressed someone is the more sensitive they can become. They can also experience differences in the way they experience their bodies, this is called proprioception. They may find it difficult to know where their limbs are in relation to their bodies (i.e. knowing how to touch your nose when your eyes are closed). Differences in this area can mean coordination and navigating the physical world can be even more challenging.
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We are constantly surrounded by sensory stimulation and in order to manage this we filter out most of this information, only focusing on what seems important at the time. For example, when we are focusing on completing an exam most people will be unaware of the noise coming from other people, or the buzzing of the lights in the room. For many people with Autism, filtering out this sensory information is difficult. Differences in sensory processing can make everyday situations overwhelming. Some autistic people also have synaesthesia, where one type of sensory information also stimulates another, for example seeing sounds as colours. Dealing with sensory overload and sensitivity on a day today basis can be tiring and can lead to increased levels of anxiety and can impact on mood (i.e. depression). We will go through each sense and highlight how the experience of those with ASC can be different, and describe sensory strategies that may be useful.
Sight Hyposensitive sight Difficulty seeing clearly (objects can appear dark and lose their features). Differences in how sharply objects can be seen in peripheral or central vision. Affects depth perception and coordination.
Hypersensitive sight Lights and colours can be overwhelming or painful (can cause difficulty sleeping). Objects and bright lights seem to jump around. Easier to focus on details and difficulty in seeing an object as a whole. Images may fragment.
Strategies for visual sensitivity Dimming lights or providing sunglasses. Testing different shades of lens by using plastic overlays. Using blackout curtains to help sleep. Reducing the about of visual stimulation by reducing clutter, minimal decoration, neutral colours, using room dividers or material to cover up busy areas. Certain objects, such as lava lamps may provide a soothing effect. Experimenting with what stimulation is helpful is also a good idea.
Sound Hyposensitive hearing May struggle to hear sounds (it may seem like they are ignoring stimuli or someone calling their attention). May enjoy really busy noisy places.
Hypersensitive hearing
Listen to music to block out other distracting or overwhelming sounds. White noise generators (or sound files) produce a sound that can block out overwhelming background noise. Agreeing a way to communicate to the person through touch or visual means instead of calling their name. Certain sounds/music may have a soothing effect. Experimenting with what stimulation is helpful.
Smell Hyposensitive smell Not sensing extreme odours (e.g. their own body smell or the smell of food that has gone off ) so they may not wash as much as needed.
Hypersensitive smell Certain smells can be overwhelming, distracting or distressing (e.g. people’s perfume, hospital smells), this may lead to avoiding situations, people or environments.
Sounds can be intensified or distorted, which can be overwhelming or painful.
Strategies for olfactory sensitivity
Difficult to filter out different sounds, so difficulty in concentrating or focusing/ maintaining attention.
Using unscented detergents or shampoos, avoiding wearing perfume.
Strategies for auditory sensitivity Shutting doors and windows to reduce external sounds, or creating a screened area at home or the office, or positioning the person away from doors and windows. Preparing the person before going to noisy or crowded places. Providing ear plugs or inner-ear ear defenders (these look like ear plugs but are much more discrete).
Making the environment as fragrance-free as possible. People who are hyposensitive might seek out smells, so you could explore aromatherapy oils (such individuals may have smeared as children). They may like the smell of their body odour and so experimenting with alternative smells. NB: Be aware of what fragrances to use if the individual has epilepsy. Preparing the person if they are going to have to go into smelly environments (like hospitals).
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Taking stress relieving tools (music, stress balls), or taking something with a nice smell (handkerchief with a few drops of essential oil).
Taste Hyposensitive taste
Touch Hyposensitive touch They may need deep or tight pressure to orient themselves in an environment, or to feel calmer.
May prefer very spicy food, or eat things that aren’t edible (pica).
They may seek out deep or tight touch, this could include self-harming behaviours particularly when stressed.
Hypersensitive taste
Hypersensitive touch
May struggle to eat, become stressed or avoid certain foods, tastes, textures. Or be very rigid and routine based in the food that they will eat.
Touch, particularly light touch, may be painful or distressing, so they may shy away from hugs or physical contact. This often becomes worse when the person is extremely stressed.
Strategies for taste sensitivity Explore which foods are easier to eat, it may be that by preparing the food in a different way which changes the taste (such as adding or removing spices) or texture will mean that their diet can include more types of food. If you want to expand the variety of food, starting with really small bits of new food and experiment with eating this in a relaxed way, alongside food that they do enjoy.
They may find certain food textures distressing, uncomfortable. Women may find sanitary pads uncomfortable. Certain clothing may be uncomfortable and overwhelming. They may engage in self harm behaviours due to the differences in touch sensitivity.
Strategies for tactile sensitivity Hyposensitivity: Weighted blankets, pillows or sleeping bags can help reduce stress and improve sleep. Tight bracelets, watches, or tight socks and shoes can also be helpful. Textures such as jelly, or cornflour and water, latex-free tubes, straws or hard sweets can be helpful alternatives to chewing on inappropriate objects. Such techniques can also be useful stress relievers. You can also get necklaces with chewable beads which can be great stress relievers and alternatives to self harm.
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Hypersensitivity: Warn the person if you are about to touch them, always approach them from the front remembering that a hug may be painful. Deep ‘bear hugs’ maybe less uncomfortable or even pleasant for individuals. Slowly introducing new textures, or building up resilience to painful but necessary touch (such as toothbrushes or water) can be helpful. Linking this to lots of praise and rewards is also useful. Finding out what textures/items give pleasure and are stress relieving; these can be put in a book or kept on the person and used to help with anxiety. Buying clothes from charity shops that are already softened after wearing, or washing new clothes several times and cutting out labels or turning clothes inside out may also help.
Balance (vestibular) and body awareness (proprioception) Autistic people with hyposensitivity in terms of balance may rock, spin, swing, particularly when anxious or excited and may struggle with co-ordination and travel (e.g. sitting in a car). Individuals with hypersensitive proprioception may find it difficult to regulate how closely they stand to others and to navigate their way around objects. They may struggle to sit up straight, because they are unaware of how their body is positioned, this may cause problems with joints and physical pain, that they are not aware of and struggle to communicate. Some individuals on the spectrum also have issues like hypermobility (see https://www.nhs.uk/conditions/ joint-hypermobility-syndrome for further information). Difficulties with proprioception combined with difficulties with multi-tasking may mean that being told to alter their bodies such as ‘sit up straight’ takes all their attention and they cannot listen or take in what is going on around them.
Getting an assessment and advice from an occupational therapist can sometimes be useful to highlight what their sensory issues are and what may help.
Strategies for vestibular and proprioceptive sensitivity Finding exercise and activities that can help develop better body awareness and balance can be helpful. Exercises and physiotherapy can also be useful if people are experiencing pain or discomfort. Seek advice from your GP.
Implementing sensory strategies REVIEW: Are they using sensory strategies now? Which strategies do you think would be good to try? Discuss or think about when they might be useful. PLAN: What sensory differences do they have? How do these affect them? Are there sensory experiences that are relaxing or pleasurable for them? DO: When are you going to do this new thing, is it a good time? What obstacles are there? How can you work as a team? Remember that it may not go right initially but this is OK. Whatever the outcome this can be reflected on and learned from.
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REVIEW AGAIN: It is useful to review how the interventions worked or didn’t work, thinking about what you have learnt about your loved one and their anxiety and talking about what you would want to do in the future. If it is possible, reviewing this with your loved one is a great way of developing their self-awareness and it is an opportunity to praise them and build up confidence and resilience.
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Chapter 6
SENSORY DIFFERENCE
Use the space below for your thoughts:
Chapter 7
REVIEW AND LOOKING AHEAD Understanding how Autism Spectrum Conditions affect the individual allows us to see the world from their point of view and to think about how we can best support them to develop and build on existing skills. We have looked in detail at the areas of difference and difficulties in Autism Spectrum Conditions. To help refine and further understand these, use the tables below to review strengths, areas of development and strategies which could be implemented. It is very important not to expect too much of ourselves and not to take on too much and introduce too much change. That is why we would encourage you to think of one specific
area where you would like to change the way you support and help to introduce a positive change. Also bear in mind that any change can be difficult and that any changes will not happen quickly. It is important to personalize strategies and to be flexible and respond dynamically to changes or any difficulties you experience along the way. Sometimes an idea has to be adapted or even abandoned; because to persist with an approach that causes stress and anxiety on an ongoing basis for all parties is fruitless and counterproductive. When this happens, stop, take a deep breath, gather yourself and start again. It is much better to stop, review, plan and adapt and give yourself time to reflect, talk and consider the next steps. Let’s start by thinking about the different areas associated with Aautism Spectrum Conditions and how these impact on the individual. Use the table below to remind you of strategies and approaches that may be helpful:
Verbal communication Strengths
Areas of development.
Potentially helpful approaches.
Non-verbal communication Strengths
Areas of development.
Potentially helpful approaches.
Social relationships and interaction Strengths
Areas of development.
Potentially helpful approaches.
Social imagination: Theory of Mind, planning and seeing the bigger picture Strengths
Areas of development.
Potentially helpful approaches.
Managing change and motivation Strengths
Areas of development.
Potentially helpful approaches.
Anxiety and mental health Strengths
Areas of development.
Potentially helpful approaches.
Impact of sensory differences Strengths
Areas of development.
Potentially helpful approaches.
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Strategies Go through the guide and note down the useful strategies for each area.
Area
Strategies
Communication (verbal and non-verbal).
Relationships. Theory of Mind, planning and seeing the bigger picture. Managing change and motivation.
Anxiety and mental health.
Impact of sensory differences.
How to plan:
Are you aware of how the issue affects their behaviour, thoughts, physical symptoms, and emotions?
When thinking about how to help your loved one it is useful to think about the ‘REVIEW, PLAN, DO, REVIEW AGAIN’ model.
Has anything helped in the past in dealing with this issue?
REVIEW what you know about their current challenges and what works. PLAN what you think might be helpful. DO consider how you will put the strategies in place. REVIEW afterwards what worked well and what less so well. REVIEW: Think about the specific issue (e.g. change, sensory stimulation) that they struggle with. What do they find easy? PAGE 41 | CHAPTER SEVEN | REVIEW AND LOOKING FORWARD
What is their awareness of the issue and how it affects them (e.g. how do they see their difficulties with relationships)? PLAN: Think about the specific issue (e.g. change, sensory stimulation) and look through the strategies referred to in this guide. What strategies have you already tried, what has the outcome been? Are there strategies you have not tried, could try again, or adapt? Choose just one or two strategies to work on at a time.
DO: When are you going to do this new thing, is it a good time? Where is it going to happen? What obstacles are there? How can you working as a team?
Chapter 7
REVIEW AND LOOKING AHEAD
Use the space below for your thoughts:
Remember that it may not go right initially but this is OK. Whatever the outcome this can be reflected on and learned from. REVIEW AGAIN: It is useful to review how the interventions worked or didn’t work, thinking about what you have learnt about the individual and their anxiety and talking about what you would want to do in the future. If it is possible reviewing this with your loved one is a great way of developing their self-awareness and it is an opportunity to praise them and build up confidence and resilience.
PAGE 42 | CHAPTER SEVEN | REVIEW AND LOOKING FORWARD
Use the space below for your thoughts:
PAGE 43 | YOUR THOUGHTS
Š 2019 Alongside Autism