3 Understanding autism

The word 'spectrum'

The word ‘spectrum’ emphasises the variation amongst autistic people, with individuals having a unique pattern of strengths and difficulties. People on the autism spectrum have a range of intellectual abilities and will present differently depending on their developmental stage and sex. People on the autism spectrum will have a range of strengths and challenges and some will require a high level of need for support, while others will have more subtle difficulties that may still require support. People on the autism spectrum will also have individual differences in the range of their strengths and talents.

The definition of autism

Autism is a lifelong neurodevelopmental difference. This means it is a condition that affects the development of the brain. Autism affects the way a person communicates and interacts with others, how information is processed and how the person makes sense of the world.

The human population is highly diverse. Within the autistic population, there is also a great deal of diversity, and autism manifests differently from person to person.

For children and young people, there is a reciprocal relationship between the autistic learner and the environment – this includes the physical environment and the people around them. With appropriate understanding and adjustments, autistic people can flourish.

Autism is not a linear scale running from 'high functioning' to 'low functioning', which are unhelpful terms. Instead, autism varies in several different ways – sensory differences, levels of anxiety, social skills and executive functions all vary both from person to person and from time to time. Look at this short comic strip that provides one explanation of autism. A printable PDF version of the comic strip is available through the link.

Prevalence of autism

Autism affects around 1.03% of the Scottish population (McKay et al., 2018).

There are some groups where autism is under-recognised, for example:

• females
• black and minority ethnic children and young people
• children and young people living in poverty
• children and young people who are referred for autism assessments, because they have similar presentations, and do not receive a diagnosis of autism. However, they are still entitled to and require their needs to be met.

What is core to autism?

Figure 9 Autism core characteristics

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Autism core characteristics. This image is a centrally placed silhouette of a head with the text Autism across the brain area. Around the head are four ovals with the four characteristics of autism: 1. Communication differences, 2. Sensory differences, 3. Thinking difference, 4. Impact of Environment.

Figure 9 Autism core characteristics

There are four characteristics core to autism:

• communication differences
• sensory differences
• thinking difference
• impact of environment.

When the above four aspects illustrated in Figure 9 are not supported appropriately, it will lead to increased anxiety for the autistic person, which is further discussed in Section 3.7.

What causes autism?

For most individuals, the cause of autism is not identified. Autism is generally thought to have a genetic basis and research is ongoing.

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The Professional Development section on the Toolbox has a range of films you can watch which focus on the causes of autism.

Autism: males and females

Autism is thought to be more common in boys than girls. However, there is a growing consensus that girls are under-diagnosed or misdiagnosed. A range of reasons are given for this, including different societal expectations; diagnostic tools being designed around boys; and special interests are often gender determined due to social expectations, so interests of girls might be perceived as less unusual (e.g. strong interest in lip balms compared with interest in trains).

The quiet, anxious presentation of autism occurs across genders but might be more prevalent in girls, and these individuals are more likely to be missed.

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The Professional Development section on the Toolbox has a range of films you can watch that focus on girls and autism.

Communication can be pre-intentional and intentional

Pre-intentional

Where the learner says or acts without intending to affect those around them. This type of communication can be a reaction to something or can be used to self-sooth.

Intentional

Where the learner says or acts with the purpose of sending a message to another person. This type of communication can be used to ask for something or to object.

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Communication stages

There are many ways we can think about stages of speech, language and communication development, and sources of detailed information about this. In the Toolbox, the following three stages (as described in the SCERTS model, Prizant et al, 2006) might be useful ways to think about the strategies we use and how they fit the child’s stage.

Pre-verbal or social partner stage

Individuals have less than ten words. Communication may be through behaviour and actions rather than words. Joint attention with others may be difficult, with attention focused on objects of interest. The individual may be communicating intentionally but may not. They may have some words, but these are not used consistently or effectively.

Language partner stage

At this stage individuals may have developed over 100 words, which they use with meaning. They may put words together in short phrases or sentences. Often at this stage they are able to talk best about the ‘here and now’ and find it harder to talk about the past or future. They may be able to say what they like and don’t like and, although they can learn emotion vocabulary, their theory of mind is at an early stage. They understand symbols and benefit from visual supports to support verbal communication.

Conversation partner stage

Conversation partners can engage in conversations with others. First, at a simple level, and then over time they can become sophisticated communicators. At this stage they can have an excellent vocabulary and mastery of language. They are likely to still need visual supports appropriate to their stage, and they may be able to use language or ‘meta-cognitive’ skills to overtly learn strategies to manage the social world. They may become able to mask some of their social communication difficulties and what we might notice are signs of anxiety or difficulties with social aspects of communication. The way we understand and use social communication develops over our lives and we should not underestimate the significant impact of social communication challenges for individuals at this stage.

Variability

When anxious or stressed, individuals do not understand and communicate in the way they do when calm and well regulated. We need to make bigger adaptations in reducing language and reducing expectations. It is recognised that communication skills observed can be ‘deceptive’ and people around them may judge that the person’s communication is at a higher stage than it is. For example, they may have good vocabulary around topics that interest them but have gaps in common vocabulary, or they may use echolalia, where they repeat words or phrases heard elsewhere.

Social communication

Social communication occurs between people and involves understanding of social signals and using social signals in more or less expected ways. It can require coordination of verbal and non-verbal messages.

Social communication differences are present in autistic individuals. These are lifelong but present in different ways at different stages.

For autistic learners, this can lead to feeling misunderstood or as if they are getting things ‘wrong’. Adults might notice unexpected behaviours in social situations. Peer relationships are often most successful with small groups or individuals with shared interests.

Eye contact

Reduced use or understanding of eye gaze for social purposes is core to autism. Some children will be overtly avoidant and seem to almost find direct gaze painful, whilst others will not have obvious outward difficulty with eye gaze. You do not have to have poor eye contact to be diagnosed with autism.

Joint attention

Typical children develop joint attention in the first year of life and by 9–18 months start to use pointing, with coordinated eye gaze, to both request and share attention as if saying ‘look at that’. They can have sophisticated communication turns with others with or without words because they know where other people are looking and that others have seen where they look.

A common early sign of autism is delay or absence of pointing to share attention by 18 months.

Joint attention is a precursor to social play and theory of mind. Older autistic learners may have developed simple joint attention but still have difficulty working out what others are focused on, interested in, what they feel or believe through joint attention, and interpreting other people’s non-verbal behaviour.

Prosody and American accents

We convey a range of meaning with our intonation, pitch and stress. For example, the phrase ‘cup of tea’ could be a question, a refusal, could indicate pleasure, an acceptance, a comment etc.

Autistic learners can have difficulties understanding prosody and therefore the intention behind the way teachers or peers say things, which in turn leads to social difficulties.

It is more common in autism than in other conditions for UK speakers to speak with an American accent. It is thought that they may give equal weight to language and intonation heard on TV as they do to that of their social world and family. Other children are likely to unconsciously give preference to the accent of their family over those with whom they have no social connection.

Body language

Autistic people may have difficulty processing or interpreting facial expressions, gestures and body language of others and therefore they miss social cues communicated in this way. They may not know they are being spoken to unless the other person uses their name first.

They may not notice body language at all because their attention is not focused on that. They may understand it in some contexts, in pictures or in discussion, but have difficulty interpreting it ‘in the moment’ or in context.

They may not notice body language at all because their attention is not focused on that. They may understand it in some contexts, in pictures or in discussion, but have difficulty interpreting it ‘in the moment’ or in context.

Prosopagnosia

Although not present in all autistic people, some may have a co-occurring difficulty with recognising people’s faces, judging ages or gender – including family members and close friends or even their own face. They may use alternative strategies, such as remembering clothes or places people are commonly seen. They may appear to be ignoring people and find it hard to use names correctly.

Autistic people may have difficulty processing or interpreting facial expressions, gestures and body language of others and therefore they miss social cues communicated in this way. They may not know they are being spoken to unless the other person uses their name first.

They may not notice body language at all, because their attention is not focused on that. They may understand it in some contexts, in pictures or in discussion, but have difficulty interpreting it ‘in the moment’ or in context.

While signing can be helpful as part of a ‘Total Communication’ approach, use of signing can be difficult for individuals who have difficulty with joint attention or noticing other people’s actions. For these individuals, objects, symbols or picture exchange systems can be more effective as communication supports.

Some autistic people may also use facial expressions and body language in an unexpected or idiosyncratic way, for example, smiling when anxious.

Comprehension or understanding of other people’s communication

It is common for understanding of autistic people to be overestimated. Although, we do see a range of stages, from not understanding words to having excellent language skills. Below are some examples of how the understanding of autistic individuals can be affected.

• Understanding varies with context and demands at any one time.
• Expressive language may be in advance of comprehension.
• Echolalia (repeating words or phrases immediately or after a delay) is often a sign of poor comprehension. Even when individuals are conversation partners, they can be ‘overliteral’ in their understanding and not pick up when people say one thing but mean another.
• The combined challenge with understanding non-verbal information, social information, unspoken and spoken messages means that the risk of misunderstanding is common.

Key strategies

• reduce your language
• use the person’s name to cue them in
• focus on teaching the names of key people
• provide opportunities for initiation
• use visual supports
• allow time … wait

Individualised, stage-specific strategies and supports can be discussed with the team around the child.

Technology to support social communication and interaction

Technology can be particularly helpful for autistic people who have difficulties with their social communication and interaction. Used for this purpose, it is referred to as Augmentative and Alternative Communication (AAC).

AAC covers a wide range of strategies: some do not involve technology such as gesture and signing, but many do, including symbols, word boards, communication boards and books, as well as communication aids. The purpose in using them is to enhance communication, not to replace or inhibit existing skills. There is no evidence that using AAC negatively impacts speech and language development.

Many AAC strategies are visual and relatively static. Spoken language, on the other hand, is auditory and always transitory by nature. Some people process information better when they are looking at pictures or written words to help them visualise spoken information.

Visual supports for communication often take the form of picture symbol sets used through pointing by those in the environment to supplement their speech. As well as supporting understanding, this also provides a model to the individual on how they can use symbols to get a message across. This teaching technique is often referred to as Aided Language Stimulation.

Autistic learners can benefit from the use of symbols in their environment and within their AAC system, whether printed (low tech) or electronic (high tech).

There is a range of picture symbol sets and software for printing visuals, including:

• Boardmaker using Picture Communication Symbols (PCS)
• Matrix Maker Plus which uses Widgit symbols, SymbolStix and Inclusive Technology symbols.

Low-tech AAC systems

It is important to consider the use of low-tech AAC systems, which include:

• pen and paper to write messages or draw
• alphabet and word boards
• communication charts or books with pictures, photos and symbols.

Some low-tech systems have been designed primarily for use by autistic learners. These include:

Picture Exchange Communication System (PECS) – designed to teach autistic learners the basic concept of communication. At its core is the shaping and developing of communication activity, encouraging the individual to give a symbol to another person. That person giving the desired object in return

Pragmatic Organisation Dynamic Display (PODD) – an approach that involves giving individuals access to a large vocabulary of words in a symbol communication book, based on the way that we use language socially and taught through modelling. It is also available in some communication devices and apps.

The Toolbox has additional information and downloadable resources to support communication as highlighted in Figure 10.

Figure 10 Autism Toolbox communication supports page.

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Autism Toolbox communication supports page. This image shows the four collapsible headers: 1. Using visual supports to support understanding, 2. Symbols, 3. Assessment for using AAC, 4. Supporting autistic learners with the AAC system, 5. Examples of High Tech AAC systems.

Figure 10 Autism Toolbox communication supports page.

Autistic people and their families told us that the big five things that they wanted the public to understand were that autistic people can:

• need extra time to process information
• experience anxiety in social situations
• experience anxiety with unexpected changes
• find noise, smells and bright lights painful and distressing
• become overwhelmed and experience a 'meltdown' or 'shutdown'.

All of these areas will have an impact on being able to effectively communicate.

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Go to the National Autistic Society’s website for further information on this campaign.

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Expressive language

At least 50% of autistic people have a co-occurring developmental language disorder which can affect their speech, language and communication.

• Language can be measured in the words we use (vocabulary) and the way we put these together (grammar) and length of utterance.
• Expressive language may include echolalia (repeating words and phrases from people, TV or computers) or spontaneous and creative speech.
• Verbal dyspraxia affects the fluent articulation of speech, due to difficulties with planning motor movements for speech.
• Language can be expressed through words, pictures or signs.

Social communication

Difficulty understanding and using social communication according to the conventions of the local context affects individuals across the lifespan. This is not something that can be ‘fixed’. Social communication skills do develop and can be scaffolded, however, as individuals transition to new roles and activities in life, additional support might be required at each stage.

Some difficulties may be more apparent, such as those who talk repetitively or endlessly about a favourite topic. Others may be more subtle, such as those who ‘copy’ social behaviours or very rarely initiate and wait for other to take the lead in social interactions.

Metacognition

At the conversation partner stage, children begin to develop the ability to reflect upon their knowledge, learning and actions. Prior to this stage social skills, groups are not recommended (see NAIT Guidance on Social Communication Groups).

Peers

Peer interaction is often harder than interaction with those older and younger. Adults are likely to make adaptations and younger children’s communication is likely to be less sophisticated and demanding.

Groups can be more difficult than 1:1 interaction and therefore collaborative learning can present challenges. Reasonable adjustments may include:

• allocation of clear roles
• scripts
• sticking to familiar rather than new activities in groups
• having a familiar and supportive peer
• having predictability
• a range of visual supports
• at the secondary stage, individuals with good language skills and motivation to make friends might benefit from taking part in focused work on this (e.g. the PEERS programme).

Masking and camouflaging

Some autistic people use masking and camouflage as coping strategies. These may be intentional or unconscious habits (‘Putting on My Best Normal’: Social Camouflaging in Adults with Autism Spectrum Conditions, Hull et al., 2017).

Some autistic learners may have delayed language, but the degree of impairment varies greatly. Some may remain non-verbal throughout their life; others may have limited skills, only using speech to communicate their needs.

Supporting communication – key strategies

• reduce your language
• use the person’s name, to cue them in
• focus on teaching the names of key people
• provide opportunities for initiation
• use visual supports
• allow time … wait
• individualised, stage-specific strategies and supports can be discussed with the team around the child.

Physical environment

The physical environment consists of the sounds, smells, lighting, layout and visual aesthetic of a space and can all have an impact. It is important that reasonable adjustments are made to the classroom environment to reduce as many barriers to learning as possible. As with any child or young person, barriers will differ depending on the individual. Any adaptations can often benefit all learners in the classroom, not just the autistic learner.

The structure and ethos of the classroom are important tools for helping autistic learners understand expectations and access the curriculum. All learning environments should provide a positive influence and clear structure for autistic learners. This encourages independence and helps reduce anxiety. A well-organised, calm, supportive classroom with clear structure and routines can help make the environment a more predictable and accessible place, reducing distraction and confusion. This can include regular breaks throughout the day with access to different activities, some of which are multisensory. Where possible, practitioners should create physical structure, either using furniture or even tape or a mark on the floor. They should make the function and any accompanying rules of each area as clear as possible. They should carefully consider the seating arrangements in the classroom. Autistic learners may benefit from access to a quieter, distraction-free area in the class. The movement of other pupils as well as staff within the layout of the class is another aspect to consider, particularly where several staff members may work within the room.

Consideration of visuals within the classroom space is important. Busy displays and posters can be very distracting to an autistic learner. As a general rule, practitioners should aim for a clutter-free, low-stimulus environment. A well-organised classroom with stored items, equipment and books in clearly labelled cupboards/areas will promote independence as well as reducing distraction. The use of visual supports, at an appropriate developmental level, is expected for autistic learners. As with all supports, these should be regularly reviewed.

Social environment

The social environment is concerned with the attitudes, expectations and actions of those within the class and how these can affect autistic learners, either positively or negatively.

Practitioners should aim to develop a classroom culture where autistic learners feel valued and secure, individual differences are respected, and diversity is highlighted and celebrated. These children and young people learn best when they can focus on a task and are not anxious or worried. Practitioners should reduce stress by considering each learner’s competence. When children and young people have difficulty with retaining information, understanding instructions or the complexities of language used, practitioners should differentiate their own language and instructions, as a routine part of their practice e.g. say less, slow down your rate of speech, stress key words and use visuals to support understanding. Using a variety of teaching styles and allowing additional thinking/processing time can be valuable.

Routines

Routines are events that happen in the same way with regularity. The start, middle and end of the routine becomes predictable through repetition. Daily routines help autistic learners to know and anticipate what comes next, and social routines help them enjoy and interact with others. Autistic learners benefit from a degree of order and consistency in their lives. It may be useful to consider routines in terms of how the day/week is structured and how lessons are delivered.

Autistic learners may need developmentally appropriate visual support to help them recognise predictable routines and additional visual supports to help them understand changes to these routines. Having a consistent format for the start, middle and end of each lesson can be beneficial. Preparing learners for change, for example, giving clear notification (preferably communicated visually) if another member of staff will be covering the class, can be very beneficial. Simple approaches such as having consistent seating plans can help reduce the risk of anxiety or distraction and setting regular days for giving out and collecting homework can help learners develop good habits for completing it.

Practitioners should consider using a consistent format to lesson delivery, which can help autistic learners know what to expect, so that they can be prepared. Stating the learning intentions at the start of the lesson, ensuring that these are understood and referring to them regularly may help learners at conversation partner stage to focus. Reviewing and summarising learning outcomes may help these autistic learners understand if their personal learning targets have been achieved. Practitioners should encourage autistic learners to see themselves as respected and useful members of the class. This can be promoted by regularly assigning positive roles e.g. group leader or peer supporter. This can help reduce negative views that some autistic learners may have of themselves.

Inclusive learning environments

Learning environments and adapting learning environments to specific needs. Creating an inclusive learning environment through positive relationships and behaviour is the responsibility of everyone in each community of learning. This approach will improve the support for autistic learners and their families as awareness of autism inclusion, wellbeing and equality is embedded across the school community. Information and professional learning on inclusive practice can be shared at:

• parental/carer information sessions
• staff information sessions
• blogs
• setting up and leading a collegiate/network group
• linking with the schools in your management group/cluster/family group/local area
• engaging with the development of school policies
• school websites
• providing professional development sessions at in-service events.

Inclusive classrooms

Inclusive classrooms support all learners and reduce the extent to which further additional support is required and allows the implementation of individual support to be minimally intrusive. Developing an inclusive classroom therefore is a child-centred approach which meets professional and legislative duties. It is also an effective use of time management. For example:

• Ensuring appropriate labelling and visual supports are in the classroom supports learners who experience language and communication difficulties, and also English as an additional language.
• Effective planning and organisation will save time and support learners.
• Liaising with support colleagues and, if appropriate, ensuring effective management of any resources and their support staff time.

Collaborative support

In partnership with families, colleagues and, where possible, the learner, find out what’s desirable and regulating, then build it into a day that is as routine or predictable as possible for your autistic learners.

How to use a safe space

Simply creating the space is not enough. Learners need to be taught how and when to go to the safe space in a calm moment, and they need to learn to trust that adults will use it in a consistent way.

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Other adjustments that can help

• Own choice of clothing, which still looks 'uniform'.
• A locker or safe place for things that help them calm down; pocket sized items that help concentration or are calming, sometimes called 'fidget objects'.
• Regular timetabled physical activity or 'movement breaks' (even when they seem calm – it’s 'fuel for their tank!').
• Regulation 'menu' (photos, symbols or a written list of chosen regulating activities).
• Visual supports for regulation such as zones of regulation materials.
• Discuss helping the child’s peers understand that some people have sensory differences. It may help to teach how to support or react to unconventional behaviours like a child’s need to ‘stim’ or the likelihood of upset outbursts.

In conclusion

Support is a marathon, not a sprint. Once you have got strategies in place, keep going. Review regularly, but ideally make changes in tandem with those who know the child or young person best, and make sure you pass what you have learned on to those who support the child. It is extremely important to share this to support any transition – macro or micro.

Common signs of anxiety

Some common signs of anxiety and distress might include noticeable:

• physiological signs (e.g. pale, sweating, trembling, restlessness)
• communication changes (e.g. increased or decreased chatting)
• reports of physical symptoms (e.g. stomach ache, headache, nausea or muscle pain).

Autistic learners experiencing anxiety may have difficulty sleeping and concentrating and may have a sense of losing control or have repetitive thoughts about perceived threat. They may feel worry, irritability or distress.

Figure 12 Partners stages of communication

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This image represents the three partners stages of language development for communication. Each stage is within incremental rectangles – Social, Language and Conversation all in front of a larger rectangle titled Partner Stages.

Figure 12 Partners stages of communication

Those around the learner may not pick up the signs that they are anxious until they see the more obvious signs listed in the stages below. The behaviours have been grouped broadly by the three developmental stages within Figure 12.

Anxiety build-up

As anxiety increases, a learner is less able to connect to their coping strategies or to their problem-solving skills and is therefore likely to become more inflexible than their normal presentation. An anxious autistic learner might well be avoidant and may appear oppositional when invited to try new experiences; refusing these experiences might be perceived as keeping themselves safe and less vulnerable than venturing into the unknown.

Supporting autistic learners with social anxiety

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