What is Autism?
Autism is a lifelong developmental disorder that affects individuals in a variety of different ways. There are three main areas of difficulty, often referred to as the ‘triad of impairments’, which are difficulty with social communication, difficulty with social interaction, and difficulty with social imagination.
Many people with autism also have a learning disability, but individuals will have varying ‘degrees’ of learning disability. Other conditions that are sometimes associated with autism include Attention Deficit Hyperactivity Disorder (ADHD), Dyslexia and Dyspraxia. Also, around 28% of children on the spectrum also have epilepsy. Even children who are not already diagnosed with epilepsy may begin having seizures as they reach puberty. ASD affects around 1 in 100 people in the UK, from all nationalities and backgrounds. Boys are four times more likely to have autism than girls.
The exact cause is not known but research indicates that genetic and environmental factors together are important, and may account for changes in brain development. Each person will display characteristics from the three main areas of difficulty, but the effect of each varies significantly for each person.
Poor grasp of non-verbal communications, e.g. difficulty using or understanding tone of voice, body language or facial expressions. Poor grasp of verbal communications, e.g. difficulty using or understanding jokes, and literal meanings of words such as ‘You’re pulling my leg’, means that someone is joking with you, but to the person with autism it sounds like you are accusing them of physically tugging your leg. Speech may be limited, and so sign language or visual aids and symbols may be a more effective way of communication. There could be problems with repetition of words, but this doesn’t mean that they have poor language skills or a lack of understanding. They might just need a bit more time to process information.
They may have a lack of social skills or display inappropriate behaviour, e.g. they may stand too close to another person, or they may always tell the truth when it’s not always appropriate. They may appear distant or uninterested in what’s going on around them and would prefer to be in their own company than with others. They may have difficulty understanding emotions and could appear insensitive to others’ feelings. There may be difficulties in making and maintaining relationships/ friendships and they may not be sure how to go about doing this.
Play is often solitary and repetitive. Some children may enjoy imaginative play but they prefer to act out the same thing each time, and may not like another child trying to change things. They may not understand the concept of danger and could run out onto busy roads. They may have a love of routines and would not cope well in new or unfamiliar settings, or if something in a setting is changed. It is important to warn the child in advance and prepare them fully for any changes they are likely to experience.
Hints & Tips
Structure: provide some sort of structure as free choice can lead to anxiety, e.g. use symbols on a visual chart as a way of informing the child what activities they can do and when. A visual timer can inform the child how long they will be participating in a particular activity for. Give them plenty of notice when an activity will finish.
Choices: don’t overload the child with too many choices – keep them to a minimum in case the child struggles with an overload of information. Also, when offering choices, make sure that you rotate the final choice, i.e. ask the child twice which they would prefer, e.g. orange or apple, then apple or orange. If you do not rotate the choices like this then the child might not be giving you their actual choice but will instead echo you (also known as palilalia, which means the child will simply repeat your words). If you find that the child continues to repeatedly ask for the final choice then introduce picture choices.
Rules/ instructions: these should be consistent, i.e. follow through anything that is said. Rules/ instructions should be given in simple, precise, concrete language. Check with the child that they understand what you’ve said. Don’t overload them with information – give instructions one at a time allowing sufficient time for the information to be processed. Also, give the child time to respond to instructions or questions – they may need a bit longer to absorb and process the information/ instructions.
Communication is key: do not assume verbal language has been understood – always use photos, symbols and drawings to complement verbal language where possible. Ensure familiarity with the child’s communication methods.
Word use: think about the words that you use and what they mean to the child. For example, some children don’t respond well to the word ‘no’. The child may associate it with being unable to do something that they really want to do. However, other children might not like the actual word or how it sounds, and so it’s important to think of a substitute word or show them a picture/ symbol instead.
Quiet time/ space: do not expect the child to take part in all activities that involve play with other children. Give them physical and personal space. A quiet corner can be a good way to relax and calm down after stressful situations. Children on the spectrum often have a sensory need for pressure. Something like a weighted wrap or cushion, or ‘lap pad’, could be a useful item to have available. There are many different designs available so you can choose one that will be more appealing for a particular child. The child could have it draped over their shoulders, or sitting on their lap. The child who uses the weighted cushion will often display increased attention, and decreased hyperactivity.
Be positive: give the child plenty of positive comments and don’t just communicate negatives to the child.
Interests: if the child has a special interest, try to use it as a way of engaging with others, e.g. if the child likes rubbish, have a recycling project; if they like shiny objects, incorporate this into a sensory area or use shiny materials at the art table; if they like animals, have a play theme, e.g. at the zoo, on the farm, where all the children can play together. Also, using the child’s special interest works well for reward charts instead of simply disciplining the child for any bad behaviour; e.g. if the child likes Thomas the Tank, then reward them with a Thomas sticker rather than using a disciplining technique such as the naughty step. Consequences to actions can be confusing to the child due to ‘central coherence deficits’, and so the child will find it difficult to understand the purpose of discipline, therefore a reward system will be more effective.
Environment: be aware of the environment and avoid any sudden changes. Prepare the child fully in advance of any changes to the setting or routine.
What is Aspergers?
Asperger’s Syndrome is lifelong and affects how someone communicates, how they relate to others and how they make sense of the world. There are three main areas of difficulty, often referred to as the ‘triad of impairments’, which are difficulty with social communication, difficulty with social interaction and having strong or narrowed interests.
There are similarities with Autism, however people with Asperger’s Syndrome have fewer problems with speaking, and are often of average or above average intelligence. Unlike Autism, they tend not to have the accompanying learning disabilities, but could have specific learning difficulties, such as dyslexia and dyspraxia, or other conditions such as Attention Deficit Hyperactivity Disorder (ADHD) and Epilepsy. There are also associations with motor difficulties, and mental ill health in older children and teenagers. There are around 1 in 100 people in the UK with an ASD, from all nationalities and backgrounds. Asperger’s Syndrome appears to be more common in boys than girls. The exact cause is not known but research indicates that genetic and environmental factors together are important, and may account for changes in brain development. Similar to Autism, each person will display a mixture of characteristics, but the effect of each varies significantly from person to person.
They may be recognised as being immature in their ability to understand non-verbal communications such as tone of voice, gestures, facial expressions and emotions. They may have a limited ability to have a reciprocal conversation, e.g. difficulty knowing when to start/ end a conversation. Poor grasp of verbal communications, e.g. difficulty using or understanding jokes and literal meanings of words. They may use complex words and phrases without knowing their meaning. The person with Aspergers’ expressive communication may belie their understanding and comprehension of even their own language and are very good at creating strategies such as imitating to fit in.
There may be difficulties in making and maintaining relationships/ friendships and they may not be sure how to go about doing this. This could make them very anxious. They may have difficulty understanding unwritten social rules or behave in an inappropriate manner, e.g. they may stand too close to another person, or they may always tell the truth when it’s not always appropriate. This can make them unpopular with their peers. They may have difficulty understanding and guessing others’ thoughts, feelings and actions and they may have difficulty predicting what will happen next. They may appear distant or uninterested in other people and may become socially withdrawn. They often prefer playing with, e.g. mechanical objects, which are predictable, and less likely to play with other people who often seem unpredictable and confusing. They can become extremely anxious if routines are changed (e.g. if the timetable for the day changes, or the taxi runs late) or if they cannot solve a problem.
They may have a need, due to their anxiety to prefer to act out the same thing repetitively, e.g. organising things related to their interest. They may struggle with pretend games, and often prefer games with logic and rules in place. In social play they may be socially naive, intrusive, or dominating.
Hints and Tips
Structure: provide some sort of structure as free choice can lead to anxiety. A visual timer can inform the child how long they will be participating in a particular activity for. Give them plenty of notice when an activity will finish.
Rules/ instructions: these should be consistent, i.e. follow through anything that is said. Rules/instructions should be given in simple, precise, concrete language. Check with the child that they understand what you’ve said. Having them written down might help older children.
Quiet time/ space: do not expect the child to take part in all activities that involve play with other children. Give them physical and personal space. A quiet corner can be a good way to relax and calm down after stressful situations.
Be positive: give the child plenty of positive comments and don’t just communicate negatives to the child.
Interests: if the child has a special interest, try to use it as a way of engaging with others, e.g. if the child likes rubbish, have a recycling project; if they like shiny objects, incorporate this into a sensory area or use shiny materials at the art table; if they like reading, encourage them to read stories to younger children.
Environment: be aware of the environment and avoid any sudden changes. Prepare the child fully in advance of any changes to the setting or routine.
Thinking ‘out of the box’: consider the things that might upset the child, e.g. if the child doesn’t like the noise of scraping chairs, have a carpet or cover the legs in felt. Talking through issues with the child could help to reduce anxiety and increase tolerance.
Obsessive interests – many will develop an intense or obsessive interest. Interests could be lifelong, or it could be replaced by another one. Some could be encouraged so that, e.g. if there is a love of science then the child may be able to work in a related area when they are older. Special interests could serve several functions, e.g. to overcome anxiety, to provide relaxation, to occupy time, or to help understand the physical world.
Sensory sensitivities – there could be a lack of sensitivity or they could be overly sensitive, and it could occur in any of the 5 senses (sound, touch, smell, taste and sight) and also occur in their balance and sense of where their body is in space and time. Sensory sensitivities can be very complex and overwhelming. Lack of sensitivity could include being unable to feel pain or temperature extremes (e.g. a boiling heater), and some may rock or spin to help with balance and posture or to help them deal with stress. Being overly sensitive could include experiencing feelings of anxiety or pain to certain textures, e.g. the child might want the comfort of hugging, but may experience a fear of being engulfed and losing control. When eating, if food is mixed together on the plate; the various tastes could cause a sensory overload in the child’s mouth.
When supporting children and young people with autism, it is always useful and beneficial to those being supported to imagine and understand things from their perspective. Meeting one person with autism means you have met one person with autism, but any perspective can lend itself to increased understanding and awareness for people working to support those with autism.
To help us see what it’s like from a young person’s perspective, one of our members has recorded his thoughts and feelings. Shay, aged 11, has been with us for a few years and has recorded this message:
‘I really like structure to my day and following routines. Showing me this visually really helps. Please prepare me for changes and new situations in advance. I can cope with change but I really need a heads up.
Please don’t talk too much to me, too much verbal information can be very overwhelming. Keep sentences short and simple. Give me time to process what you have said. Understand that I may not be able to shift my focus rapidly, from one task to the next. I need more time to do this; either expect me to look or listen to you, I find it difficult to do both at the same time.
When I am not looking at you, it doesn’t mean I am not listening, it can actually mean the opposite. I may spin or engage in repetitive behaviour because it brings me comfort and a sense of safety. It can help me to feel calm, particularly if I am in a busy or noisy environment.
Please don’t underestimate my thinking or abilities, I may know a lot more than what you think.
Please, please, please do things with me that build my confidence and self-esteem. It can be difficult being reprimanded or corrected all the time. Respect me for who I am – I am doing all that I can to make sense of this complex world that we live in.
I am here in your class, this is a huge achievement for me, it takes a lot of energy and effort for me to be here. See me as an individual.
My autism creates many difficulties for me but I have many strengths. Help me and other children around me to see this too.’
HOPE would like to thank Shay and his family for allowing us to use and share this recording.
- ADD – Attention deficit disorder results in difficulties with concentration or attention
- ADHD – Attention deficit hyperactivity disorder results in difficulties with concentration or attention and children often have challenging behaviour
- Advice – Written reports from parents, teachers and other professionals on a pupil’s special educational needs
- Advisory Support Teacher (AST) – A specialist teacher who advises teachers and parents on a child’s special educational needs and support, especially for hearing and visual impairment
- Annual Review – The review of a statement must take place once a year. It involves a meeting, generally at your child’s school. You, as parents, and your child’s teachers and sometimes other professionals will be asked for views about your child’s progress and these will be discussed at the meeting along with any recommendations such as a change to the statement. The head teacher will then write a report to the local authority which decides whether to make any changes and/or whether the statement is still needed. You will get a copy of the report. If the statement is changed or the local authority decides to end it (cease to maintain) you can appeal if you do not agree
- APD – Auditory processing disorder is a hearing disorder resulting from problems with processing of sounds by the brain, rather than the ear
- Asperger’s Syndrome – This is a condition that falls within the autistic spectrum and includes difficulties with social interaction and communication and a lack of flexibility of thinking or imagination. There may also be sensory, motor and organisational difficulties. Those with Asperger’s Syndrome are usually of average or above average intelligence
- Autistic Spectrum (ASD) – The autistic spectrum is an umbrella term that includes autism, Asperger’s syndrome, autistic disorder, classic autism or Kanner’s autism. Related conditions include pervasive developmental disorder and pervasive developmental disorder not otherwise specified (PDD-NOS (also known as atypical autism) and semantic pragmatic disorder
- BESD – Behavioral, emotional and social difficulties is the blanket term for behaviour difficulties which include a wide range of disorders and syndromes, including ADD/ADHD. Other disorders now being diagnosed more frequently include:
- Conduct disorder – a pattern of repetitive behaviour including over-aggressive behaviour, bullying, physical aggression, destructive behaviour, lying, truancy, and stealing
- Oppositional Defiance Disorder is described as a mental illness characterised by an ongoing pattern of disobedient, hostile, and defiant behaviour toward authority figures that goes beyond the bounds of normal childhood behaviour
- CAF – Common Assessment Framework: this is a structured assessment for professionals to identify children’s needs and get them access to a range of services. The CAF can be used by any of the services – social services, health or education. It does not replace specialist assessments such as a child in need assessment or a statutory assessment of special educational needs
- Cease to maintain – This is the legal term to describe a decision by the local authority to end a statement. Parents can appeal against this decision in which case the help in the statement must continue at least until the Tribunal decides the appeal
- DfE – Department for Education was formed on 12 May 2010 and is responsible for education and children’s services.
- DDA – Disability Discrimination Act 1995. This was amended in 2001 by the Special Educational Needs and Disability Act which extended disability discrimination law to education
- Differentiation – This is when a teacher uses teaching methods that suit the child and teaches at a level right for the child
- Disability Discrimination – This is where disabled people are treated less well because of their disability or they are put at a great disadvantage because of a failure to make reasonable changes to the way things are done. Schools and local authorities must generally not discriminate by law against someone with a disability
- Disagreement resolution service – A service to help sort out disagreement between parents and local authorities. Taking part does not prevent a parent appealing to the Tribunal. Parents have no automatic right to this service but can ask the local authority to provide mediation
- Early Years Action / Early Years Action Plus – Support for under-fives equivalent to School Action and School Action Plus
- EBD – Emotional and behaviour difficulties
- EP – Educational psychologist – a professional who can assess a child’s educational needs
- Generalising Learning – This is where skills learnt in one place, such as the classroom, are practised elsewhere – in the playground or the community for example
- IEP – Individual education plan – a working document which records the help for any child with SEN, including those with statements, and which should be reviewed at least twice a year (three times for under-fives). Unlike a statement, an IEP is not a legal requirement although the government’s SEN Code of Practice recommends them
- Independent Schools – Schools which are privately run by an individual proprietor or a company are not subject to much of the legislation applying to state maintained schools. They are subject to disability discrimination legislation, however. Local authorities sometimes use independent schools for pupils with statements of special educational needs. If they name an independent school in a statement they must normally pay the fees for the education provided. If parents choose to place a child in an independent school at their own expense, the local authority must be satisfied that the school can make the special educational provision that meets the child’s needs
- IPS – An independent parental supporter – a volunteer whom parents should be able to access through their local authority or Parent Partnership Service although many services are unable to provide such a person
- LEA / LA / CSA / Children’s Trusts – As local authorities (LAs) move over to becoming children’s services authorities (CSAs) or children’s trusts (incorporating health as well as education and social care) the terms in common use are changing. As a result local education authorities (LEAs) are becoming part of bigger departments and many people now use the term “local authority” to avoid confusion
- Learning difficulties – The law says that a child has a learning difficulty if he finds it harder learning than most children of his age or has a disability which makes it difficult for him to make use of local schools. Learning difficulties can include social, emotional and behaviour difficulties as well as problems with academic work such as reading, writing and maths
- LSA – Learning support assistant: someone who helps the teacher in the classroom and may work solely with an individual child with learning difficulties
- Mainstream school – An ordinary school which can meet the needs of most children
- Maintained school – A school funded by the local authority. This includes special and mainstream schools. Maintained schools can be community schools, voluntary aided schools (generally church schools), voluntary controlled schools (generally founded as church schools and which may or may not be denominational), or foundation schools (former grant maintained schools). Academies are not maintained schools although they are largely state funded and generally operate under similar rules to maintained schools under separate funding agreements with central government
- Moderate learning difficulties (MLD) – Pupils with moderate learning difficulties will achieve well below average levels in all or most areas of the curriculum, despite extra help
- Multi-disciplinary team – Professionals from different backgrounds – health, education or care etc – working together to support families and children
- Non-maintained special school – Non-maintained special schools, which are largely run by disability charities, offer specialised schooling for children who are visually or hearing impaired or are autistic, for example. Many non-maintained special schools have a long record of taking statemented children and, along with independent schools, currently educate around 12,000 pupils with special educational needs on behalf of local authorities in England
- Note in lieu – A document produced by a local authority following a statutory assessment in place of a statement; it has no legal force
- Obsessive compulsive disorder (OCD) – This is a condition in which people experience upsetting repetitive thoughts and behaviours
- Ofsted – Office for Standards in Education, the body that inspects schools and children’s services in local authorities
- OT – Occupational therapist who helps children deal with every day tasks and can assess needs for equipment and therapy services
- Peripatetic specialist teacher – A teacher with knowledge of particular disabilities or special educational needs, who travels from school to school
- PMLD or profound and multiple learning difficulties – Pupils with PMLD have severe and complex learning needs, in addition they have other significant difficulties, such as physical disabilities or a sensory impairment
- Portage – Home-based educational support for pre-school children with SEN usually made available via your local authority
- PPO / PPS – Parent partnership officer who operates within a parent partnership service; every local authority must have one but they range from large services sometimes run by voluntary organisations to services run by a single part-timer. Visit the Parent Partnership Service website to find out more.
- PRU – Pupil referral units are for children who need to be educated out of school, often because they have been excluded; hospital schools are also PRUs. They have the same legal status as schools in some respects but currently do not have to teach the national curriculum
- School Action / School Action Plus – Special educational help provided to children in mainstream schools without a statement
- Semantic / pragmatic disorder – Children with this disorder have problems understanding the meaning of what other people say, and they do not understand how to use speech appropriately themselves: it is common among pupils with ASD
- SEN – Special educational needs
- SEN Code of Practice – Statutory guidance for state funded nurseries and schools and local authorities on giving educational help to children with special educational needs
- SENCO – Special educational needs co-ordinator – the teacher with responsibility for co-ordinating special help for a child with SEN
- SENDA – Special Educational Needs and Disability Act 2001
- SLD or severe learning difficulties – Pupils with SLD have significant intellectual impairments. This has a major effect on their ability to learn and take part in school life without support. They may also have difficulties in mobility and co-ordination, communication and perception and the acquisition of self-help skills
- SLT – Speech and language therapy
- Special school – A school which takes pupils with special educational needs. Children in special schools will normally have a statement. See also non-maintained special school
- SPLD or specific learning difficulties – Conditions such as dyslexia, dyspraxia or ADD/ADHD come into this category
- Statement of special educational needs – A document which sets out a child’s needs, extra help and school place. The educational help on a statement must be provided by law
- Statutory guidance – Government guidance can be statutory or just advice on good practice. Statutory guidance has more legal force. Public bodies such as schools and local authorities must follow statutory guidance unless they can show they are doing something just as good or better. The SEN Code and the Code of Practice for Schools on the Disability Discrimination Act 1995: Part 4 are examples of statutory guidance. Government guidance will usually say on the cover or in the first few pages whether it is statutory or not. Most guidance is available on line on government websites
- TA – Teaching assistant: person who provides extra support in the classroom sometimes to an individual child with learning difficulties. Better qualified TAs can stand in for the teacher in particular circumstances
Talk about Autism
Talk about Autism is an online community for parents and carers of children with autism and others to talk about how autism impacts on their lives. It’s a great place to share your story, get support and help other people to understand more about autism.
Scottish Autism is an autism charity that exists to help those diagnosed with autism to lead full and enriched lives and become valuable members of the community they live in. They seek to maximise the individual potential of all those on the autistic spectrum and their organisation is dedicated towards helping them and those who additionally offer support to achieve this aim.
The National Autistic Society
The National Autistic Society is the leading UK charity for people with autism (including Asperger syndrome) and their families. They provide information, support and pioneering services, and campaign for a better world for people with autism.
Autism Initiatives UK
Founded in the early 1970s in the Merseyside region, Autism Initiatives is a parent-led charity and a member of both the Autism Alliance and the Confederation of Service Providers for People with Autism (CoSPPA).
Counselling Directory was set up by a team who know how difficult it can be to find support. Through our own experiences of mental health issues, we have learnt how important having relevant information is and how the right support can help transform lives. Our team is passionate about counselling and we want to promote the huge benefits talk therapy can have.
Our website is a confidential service that encourages those in need to seek help and to connect individuals with qualified counsellors in the UK. The site contains information on the common reasons people turn to counselling, as well as articles, news, and events. To ensure the professionalism of our website, all counsellors have provided us with qualifications and insurance cover or proof of membership with a professional body.
To access information about autism, click HERE
REACH Lanarkshire Autism
REACH was established on 9th March 2012 to bridge the gap in post diagnostic services across Lanarkshire, to provide support to families who have a young person with an Autism Spectrum Condition living within the authority of South Lanarkshire. Following a period of working closely within the autism community, it was noted there existed a need to work pan-Lanarkshire to provide much needed support and activities in both North and South Lanarkshire and reflect the diagnostic services used by those within NHS Lanarkshire.
Promoting and improving access for play, learning and social interaction for children with additional support needs in North Lanarkshire.
Partners in Play
Partners in Play is an independent charity, established in 1996 which offers direct support and information to families of children / young people with disabilities with bases in Cumbernauld and Wishaw we operate across Lanarkshire. We aim to to empower children and young people with additional needs to actively participate in community life. Our moral purpose is, to improve opportunities for children and young people with additional support needs, to develop independence and to overcome barriers to active participation in community life.
Autism Network Scotland
Autism Network Scotland is a hub of impartial and reliable information about autism services across Scotland. It is funded by the Scottish Government and is a key component in the delivery of the Scottish Strategy for Autism.
Scottish Strategy for Autism
Scottish Strategy for Autism to ensure that progress is made across Scotland in delivering quality services for people with autism and their families.
Autism is a national priority. Given the importance we all attach to this agenda, the development and creation of a new Scottish Strategy for Autism is vital to ensure that progress is made across Scotland in delivering quality services.
In September 2010, the Scottish Government consulted on the way ahead. The final Strategy is the result which will be delivered jointly with COSLA. The planned programme of activity is backed up with new resources of £10m over the next 4 years.
Strategic action is needed both nationally and locally. Children and adults on the autism spectrum each have a unique set of conditions which will not necessarily fall within the categories of learning disabilities or mental health, although these conditions may be present. Autism impacts on the whole life experience of people and their families. They need to be supported by a wide range of services such as social care, education, housing, employment and other community based services. A holistic, joined-up approach is necessary.
For the vision to be realised, concerted and shared action by all those involved is required. This is why we will be working closely together to deliver the improvements necessary for the people of Scotland.
The Autism Services Directory, the UK’s most comprehensive directory of services and support for people with an autism spectrum disorder, their families, and people who work with them.
More Than Words® — The Hanen Program® for Parents of Children With Autism Spectrum Disorder
As a parent, you know how challenging it can be for your child with Autism Spectrum Disorder to interact meaningfully with others and connect with the world around him.
The More Than Words Program was designed specifically for parents of children ages 5 and under on the autism spectrum. Addressing the unique needs of these children, the program provides parents with the tools, strategies and support they need to help their children reach their full communication potential.
TalkAbility™ — The Hanen Program® for Parents of Verbal Children on the Autism Spectrum
Whether or not they have a diagnosis of autism spectrum disorder, all children continue to develop their social communication skills in their preschool years. Around the age of 3, they use language to talk not only about the present, but about the past and the future, and also to problem solve. Their conversations sound more adult-like: they consider their partner’s interests by making a comment or asking a question about what the other person has said, and they listen to and look at their partner when he or she talks.
Mindrooom produces freely available resources for parents and professionals that can be downloaded. Alternatively, for printed versions of our publications, just click HERE
A closed Facebook group for parents/carers/relatives of people with PDA in Scotland. Professionals are also welcome. A request to join can be made HERE
Augmented Alternative Communication
Augmentative and Alternative Communication (AAC) is the term used to describe various methods of communication that can ‘add-on’ to speech and are used to get around problems with ordinary speech. AAC includes simple systems such as pictures, gestures and pointing, as well as more complex techniques involving powerful computer technology. More information can be found HERE