What is autism? Expand Autism is a variation in how the brain is structured which is characterised by differences in how people perceive and interact with the world around them, compared to the neurotypical (i.e. non-autistic) people. These differences mean autistic people often have difficulty interpreting and understanding social cues. This can make life very difficult for many autistic people, and can result in high levels of anxiety, social isolation and serious mental health problems. Autistic people may also have difficulty recognising danger, and can be at increased risk of harm or vulnerable to abuse by other people. Autism is often referred to as the ‘autistic spectrum’ because it affects each autistic person differently, and no two autistic people are the same. Here is 'Amazing Things Happen', a great short film by Alexander Amelines which aims to promote understanding and acceptance of autism in future generations; this video is a great way of helping non-autistic people understand what autism is.
How are autistic people affected? Expand Some people with autism are able to live fulfilling and independent lives with no additional support, but for others, living with autism is very debilitating, and can have a massive impact on the autistic person and those close to them, such as family members, friends and carers. Broadly speaking, about half of autistic people will be at or above the typical range of intellectual ability, and about half will be below the typical range of ability. We live in a busy, noisy world, and people with autism take in much more stimuli than non-autistic people. This can lead to feelings of being overwhelmed or overloaded which can lead them having ‘meltdowns’ where they become very upset, unsettled or need to withdraw completely from everyday activity. Autistic people often need a lot of additional time and space to be able to process everything they’ve been exposed to on any given day, just to keep things at a manageable level. Autistic people may find uncertainty very difficult to cope with and find it more difficult to use social cues to weigh-up situations, work out how other people are feeling or predict what might happen in the future. Non-autistic people tend to use social cues on a very subconscious level, whilst autistic people need to put a lot more energy into working out whether their behaviour is ‘appropriate’ for any given situation. Not only can this be exhausting, it can also cause a great deal of anxiety. How autism affects the individual can vary enormously, but a few examples of common difficulties may include: Very high anxiety - often due to difficulties understanding social interactions, and the fear of getting things 'wrong' Social isolation - often due to high levels of anxiety, and by being misunderstood, misinterpreted or rejected by other people Difficulties with accessing services and employment Difficulty accessing education Sensory processing issues, which can make the world feel completely overwhelming Difficulty with prioritising tasks Health inequalities Despite these challenges, people with autism can achieve their goals and autistic people make incredibly valuable contributions to society. With understanding, acceptance and having the right support when it is needed, all autistic people can have the opportunity to live happy and fulfilled lives. Some autistic people say that they benefit from being autistic; environmental campaigner Greta Thunberg describes autism as her 'superpower', and many pioneering thinkers throughout history are either known to have been, or thought to have been, autistic. A general lack of understanding about autism is one of the biggest difficulties autistic people face, which is why we think educating people about autism, and promoting inclusion, is so important.
What causes autism? Expand Autism is caused by differences in how our brains are 'wired', but there seem to be a number of factors which may influence this 'wiring'. Autism is strongly linked to genetic factors. As our understanding of the human genome increases, we are able to identify genetic markers which may result in autism. For different conditions – for example cystic fibrosis – the genetic markers are clear. With autism, there seems to be a range of genetic markers which may produce autism, but which do not invariably produce autism. As an example, there are cases of identical twins where one twin has autism and the other does not. Common thinking is that autism is caused by a combination of genetic and environmental factors, such as seizure activity, pregnancy or birth complications, or infection / illness. Autism is lifelong, and people will be autistic from birth or very early infancy, even if it does not become apparant until later on in life. People can NOT become autistic because of parenting styles or how they are raised. When autism was first identified, one of the ideas was that it may be caused by cold and distant mothers (a theory called the “refrigerator mother hypothesis”). This theory was thoroughly disproven in the 1970s when the first studies showed that autism has a strong genetic component. In the late 90s and early 2000s, Andrew Wakefield made claims through press conferences and research studies that there may be a link between autism and the MMR jab. These claims were found to be false, the original journal article was retracted and Andrew Wakefield was struck off the UK medical register. A large number of studies from around the world have shown no association between autism and the MMR vaccine. Despite the evidence that there is no link, there was for many years substantial media coverage of Wakefield’s position which caused a reduction in the uptake of the MMR jab. This in turn has caused an increase in the incidence of very dangerous diseases like measles.
Can autism be cured? Expand Autism is not a disease or an illness, so there is no cure. Some organisations claim that they are able to 'cure' or 'treat' autism, but in actual fact these 'treatments' revolve around just making people appear less autistic. This can be very damaging to autistic people, especially those who adopt certain behavioural traits to help manage their sensory input, and cope with the world around them. The notion that autism is a disease, or something to be cured, not only ignores the value autistic people bring to our communities, but can undermine the confidence, self-esteem and sense of belonging experienced by autistic people. There are also organisations who fund research into projects which seek to prevent or eradicate autism, and in our view, this is a very dangerous and unethical path to go down. Autism is not a disease or an illness, it is a different way of thinking and experiencing the world. While it is important to acknowledge that many autistic people will face a number of additional challenges, what they really need is to be treated as equals and be better understood, better supported, accepted and included. Autistic people enrich our societies, and contribute a huge amount to human progress. To quote the autistic author, activist and animal behaviourist, Temple Grandin: “If by some magic, autism had been eradicated from the face of the Earth, mankind would still be socializing in front of a wood fire at the entrance to a cave.”
Who can autism affect? Expand Autism can affect anyone, regardless of their background, race, sex, gender or where they are born, although inequalities can affect the likelihood of someone being diagnosed. Autism affects at least 1.1% of the UK population. This number comes from a range of studies in children and adults. In adults, the numbers were estimated based on household surveys, but the researchers found similar figures to what had previously been found in children. However many children and adults remain undiagnosed, so the figure is likely to be much greater Diagnosis rates of autism vary from country to country. The difference in numbers comes down to how autism is counted, when it is counted, who is included and how they check the diagnosis. In the UK, a national count hasn’t taken place in a few years, but is due soon. It will be interesting to see the new figures and how they compare to those of other countries. The number of people being diagnosed is increasing, but this is likely because methods of diagnosing autism are improving, people are more aware and so are more likely to seek a diagnosis, and it is getting easier for people to access diagnosis. Gender and autism Only around one on four people diagnosed with autism are female. However, for many years autism has been thought of mainly as a male condition. This is probably due to early research being largley conducted on males. Females are also less likely to display the traits or behaviours seen in males, which formed a core part of early autism diagnosis. This does not mean there is a 'male autism' and a 'female autism'; by including more girls and women in autism research we have improved our understanding of autism, and are also much better at diagnosing a wider spectrum of autistic people. Between 2011 and 2016, 1000 people were referred to the Leeds Autism Diagnostic Service - of these people, 32% received a diagnosis of Autism and the diagnosis rate was the same for males and females.
How can you tell if someone is autistic? Expand Autism is a 'hidden disability' and there is no way of telling whether someone is autistic just by looking at them. While some autistic people may have more obvious traits, others will not show any outward signs at all that they are autistic. Many autistic people use 'masking' to fit in with the world around them. Although this may benefit autistic people in some areas, it often comes at a great cost to the individual. Masking Masking is a complex and costly survival strategy for autistic people. It generally involves intentionally learning neurotypical behaviors and mimicking them in social situations. Sometimes masking focuses on hiding behaviors that people feel won’t be accepted. In other cases, it may focus on preparing scripts and strategies to compensate for communication differences. Masking is often developed during early childhood when people start mixing with other children. People may mask their autistic characteristics for many reasons — to boost their opportunities, connect with others, or avoid being stigmatized by other people. Masking may help at times, but regular camouflaging can have serious effects on mental and physical health. This might include anxiety, depression, exhaustion, a loss of identity, and suicidal thoughts. One way to minimize the harmful effects of masking autism is to work toward a world in which neurodiversity is accepted, and people are treated with respect and kindness regardless of whether or not they communicate in neurotypical ways. Characteristics of autism Every autistic person is different and has different experiences. However, there are some characteristics that are common in autistic people. The way these characteristics show themselves can change with age, and according to the situation you’re in. For example: the way you use language and talk might be different to most people you may use facial expressions, tone of voice, and gestures (hand and body movements) differently to most people making and maintaining friendships might be difficult for you you may be good at seeing patterns or solutions, and be good at seeing solutions to problems that other people might not you might have set ways of doing things, and find it difficult to do them differently autistic people are often very good at understanding and working with structured systems, for example languages, music, and computers you may have good attention to detail, and be good at spotting mistakes you might be passionately interested in certain things, and as a result learn a large amount about them in a short time – these interests can change throughout your life you might avoid or seek out certain sensations, like loud noises or specific textures, more than most people, and experience them more strongly there might be some foods you particularly enjoy and eat a lot of, and others that you can’t be around due to their texture or smell when working on projects, you might find it difficult to think about the project as a whole – you may do a great job on your part of a group project, but struggle to imagine how it fits in with everyone else’s part while autistic people can be good at paying attention to detail, you might find it difficult to leave out details that are accurate but not needed when talking to people or working on projects autistic people can be very determined and driven, and keep going with tasks or problems when other people may give up you might find you’re always determined to make sure things are ‘perfect’, and sometimes forget to eat or sleep if you’re working on something it can be difficult for autistic people to work in groups where there isn’t clear communication about what they’re expected to do There are a number of other possible signs that a healthcare professional will look for when assessing if someone is autistic.
Why do people talk about the 'autistic spectrum'? Expand The phrase ‘the autistic spectrum’ was originally coined to describe a group of linked neurological conditions, which have similar traits or share the same underlying mechanism. These days the term ‘autistic spectrum’ is generally used to describe the unique nature of autistic people, and to acknowledge that, much like their neurotypical counterparts, no two autistic people are the same. People have long thought of the autistic spectrum in terms of people either being ‘high functioning’ (i.e. mild or no learning disability) or ‘low functioning’ (i.e. with a moderate or severe learning disability) – however, these labels can be very unhelpful, and probably result in autism being more difficult to understand and empathise with amongst the wider population. Laura Tisoncik sums this problem up well in the following quote: "The difference between high-functioning and low-functioning autism is that high-functioning means your deficits are ignored, and low-functioning means your assets are ignored." This video provides a good explanation of what the autistic spectrum really looks like:
How is autism diagnosed? Expand The signs of autism can be different depending on the person and how old they are. Because autism is present from birth, it can usually be diagnosed in childhood. However, it may only be recognised later in life. Understanding of autism has grown over time, so more people are now being diagnosed when they’re older if the signs weren’t recognised when they were children. These are signs of autism that health professionals look for when making a diagnosis, but an autistic person may not have all of these signs. For example, delayed speech (learning to speak later than most children), or a child not speaking at all, can be a sign of autism. However, many autistic children talk at the same age a child without autism would. It’s also possible that these signs are there, but they aren’t caused by autism. If you think you or your child might be autistic, talk to your GP or health visitor. Signs of autism in children The signs of autism can change as children grow – babies and toddlers show different signs of autism than children aged 4 and older. Babies and toddlers Signs of autism in babies and toddlers can include a number of things that affect different parts of their life and behaviour. Talking and showing emotions Autistic babies and toddlers might: start talking later than most children seem less aware of others around them – for example, they might not respond to their name being called make repetitive movements when excited or upset - for example flapping their hands, rocking back and forth, or making the same noise repeatedly Autistic babies and toddlers might not: smile back when you smile at them point to show when they want something point to show you something they find interesting share when they’re feeling happy – for example, they might be having fun playing, but they might not turn around and smile at you Playing Autistic babies and toddlers might: spend a long time setting up toys in a certain way, and set them up the same way every time enjoy lining toys up in order, or watching parts of them move Autistic babies and toddlers might not: seem interested in playing with other children their age seem to use their toys to make up stories or pretend – they might also start pretend play at a later age than most children Sensory (sights, smells, sounds, touch, and tastes) Autistic babies and toddlers might: react strongly to sounds, smells, touch, tastes, or things they can see – for example, if they like the way a stuffed toy feels, they want to spend a lot of time stroking the toy become upset if given something to eat or drink that’s new to them eat a limited range of foods Children aged 4 and up As children grow and experience different environments, such as nursery and school, the characteristics of autism can appear differently. Communicating Autistic children might: speak differently to most children – for example, they might use an unusual accent, talk slowly or quickly compared to others, speak in a ‘flat’ tone that doesn’t change, or use a ‘sing-song’ voice use longer or more complicated words than most children, even in relaxed situations struggle to ask other people questions about themselves find it hard to keep a conversation going Relationships Autistic children might: show a great deal of enthusiasm for talking about subjects that interest them, but experience significant difficulty when talking about other people’s interests find it difficult to make and keep friends want to play with other children, but find it hard to ask if they can join in have 1 or 2 good friends that they spend a lot of time with spend free time, such as school break times, by themselves find it hard to tell the difference between someone being friendly or joking and someone trying to bully them or hurt their feelings get on better with adults than other children their age get on better with children who are younger or older than them spend time with a group of children, but find it hard to join in with other children’s play, and so spend a lot of time on the edge of the group have friends at school, but show little to no interest in seeing them outside of school Different situations and routine Autistic children might: accidentally make social mistakes, for example correcting a teacher about classroom rules find some social situations, like parties or busy places, overwhelming and difficult to cope with be passive around other children or adults, agreeing to everything and doing everything people ask often tell others what to do, including while playing struggle with social situations with no timetable or clear ‘rules’, such as free play or school break times find it difficult to cope with changes to their routine, especially if the change is unexpected – for example, having a different teacher for a day or having plans change due to bad weather Sensory (sights, smells, sounds, touch, and tastes) Autistic children might: react strongly to sounds, smells, touch, tastes, or things they can see – for example, being unable to cope with seams in their socks or the noises in supermarkets find certain sounds, smells, feelings or tastes particularly calming or enjoyable – for example, coloured lights or being tucked tightly into bed make repetitive movements when excited or upset - for example flapping their hands, rocking back and forth, or making the same noise repeatedly Signs of autism in teenagers and adults The characteristics of autism can affect you differently as you get older – you may also recognise some of the signs of autism in children in yourself as an adult. Many people are diagnosed with autism as teenagers or adults based on noticing that they think and behave differently from most other people. Signs of autism in teenagers As you age and experience different environments, you might notice different signs of autism. Communicating As an autistic teenager, you might: find it hard to be understood in conversations, find it hard to work out when to talk in conversations – you might never get to say what you want to say, or find yourself talking over other people find it easier to communicate with other autistic people be able to talk for a long time about the subjects that particularly interest you show a great deal of enthusiasm for talking about subjects that interest you, but experience significant difficulty when trying to talk about other people’s interests be able to answer other people’s questions, but struggle to know what questions to ask or how to answer when someone tells you something about themselves find other people say you use a lot of long words, or use longer or more complicated words than most people often use the same phrases when you’re talking struggle with hidden meanings when other people are talking to you – it might be difficult for you to understand a ‘hint’, or notice when someone is flirting with you find people can take the wrong meaning from your words or behaviour – for example, if you make a lot of eye contact, they might think you’re flirting with them Behaviour and different situations As an autistic teenager, you might: find eye contact uncomfortable, or struggle to know how much eye contact to use do well when you’re in your routine, but find it difficult when routines change – changes might make you feel anxious, make it hard to concentrate, or mean you have to work harder on things it’d normally be easy to do struggle to imagine things that you haven’t experienced before – for example, if you’re going to a party for the first time, it might be hard for you to imagine what will happen and what you’ll be expected to do find yourself making social mistakes without realising why – for example, during conversations you might not realise there are things other people would rather not talk about, or don’t think are important to talk about Learning and hobbies As an autistic teenager, you might: have a lot of knowledge on particular topics, and spend a lot of time learning about them and telling others about them have a hobby you feel very passionate about and spend a lot of time on find it hard to start a new activity but get very focused on it once you get started – you might be able to focus on it better than most people find it difficult to stop doing an activity you’re very focused on, even if you need to move on to something else – you might forget to eat or sleep Emotions and relationships As an autistic teenager, you might: spend a lot of time being careful to avoid making social mistakes, or trying to make sure you don’t accidentally hurt anyone’s feelings find that other people struggle to understand your feelings from your face or tone of voice find that your friends are often older or younger than you find that your friends tend to be autistic people have to ask people to explain idioms (phrases that say one thing, when they’re actually talking about something else), for example: “we’ll cross that bridge when we come to it”, which means “we’ll talk about that problem later” have a clear idea of right and wrong, and strong views on issues that are important to you – you might struggle to understand exceptions to rules, or ‘grey areas’ find a lot of people don’t understand your sense of humour, and you might not understand why their jokes are funny be trusting, and find people can often take advantage of you find it hard to work out when someone is being unkind Sensory (sights, smells, sounds, touch, and tastes) As an autistic teenager, you might: have a strong negative reaction to sounds, smells, sights, and things you can touch – for example, being unable to wear certain types of clothing or find it overwhelming being in places with a lot of different noises, like gyms have a strong positive reaction to sounds, smells, sights, and things you can touch – for example, enjoying flashing, multi-coloured lights in nightclubs or how loud the music is at a concert seek out certain sounds, smells, feelings or tastes because you find them particularly calming – for example, coloured lights or soft clothing and blankets find making repetitive movements (often with your hands, fingers or legs) or sounds calming or enjoyable Signs of autism in adults As you age and experience different environments, life events, and circumstances, you might notice different signs of autism. You might also have developed coping strategies for environments you find difficult, changing the way you manage them. Work and education As an autistic adult, you might: find it more difficult than most people to communicate in interviews – for example, talking about your skills – which can make it hard to get a job find it more difficult than most people to keep a job – you may be good at your work, but it might be hard to have good relationships with colleagues and managers have a lot of knowledge or feel very passionate about a subject that’s useful for your work or studies find it difficult or frustrating when rules or ways of doing things don’t make sense to you find it more difficult than most people would to work on a project or task that has unclear instructions for how to complete it Relationships and being social As an autistic adult, you might: find socialising hard work – when others seem to have a lot of energy after meeting a group of friends, for example, you might feel exhausted have had relationships with friends or partners end because you couldn’t understand how each other thought, behaved, and communicated find dating challenging prefer to be alone during breaks at work find it difficult to make ‘small talk’ – meaning conversation about day-to-day things such as the weather – or understand the reasons for making small talk enjoy spending time with other people, but find activities that don’t have clear ‘rules’ or a schedule – for example, going to parties or nightclubs – difficult because you aren’t sure what to do prefer meeting up with people to do structured activities, like cooking or taking part in a shared hobby or interest Hobbies and skills As an autistic adult, you might: have a lot of detailed knowledge about a particular topic or hobby and feel very passionate about it find that the hobbies or topics you’re particularly passionate about have changed several times in your life Communication and emotions As an autistic adult, you might: find other people often misunderstand you, or seem upset by things you say even if you don’t mean to upset them find it hard to understand why people around you see a situation one way, and not the way you understand it find change more difficult than most people do – things that disrupt your daily routine, like changes to your job or going on holiday, can make you feel stressed and anxious Sensory (sights, smells, sounds, touch, and tastes) As an autistic adult, you might: have a strong negative reaction to sounds, smells, sights, and things you can touch – for example, being unable to wear certain types of clothing or find it overwhelming being in places with a lot of different noises, like busy buses or trains have a strong positive reaction to sounds, smells, sights, and things you can touch – for example, enjoying lying under a weighted blanket, or the loudness of the music at a concert seek out certain sounds, smells, feelings or tastes because you find them particularly calming – for example, coloured lights or soft clothing and blankets find making repetitive movements (often with your hands, fingers or legs) or sounds calming or enjoyable Autistic traits and diagnosis Autistic traits – meaning things that autistic people often do, think, and feel – are often shared by people who don’t have autism too. This doesn’t mean that everyone is ‘a little bit autistic’, or that autistic people don’t need support. To be diagnosed with autism, a person has to have a lot of autistic traits from birth, and those traits need to have a big effect on their life. In order to be diagnosed with autism, those traits must cause what a healthcare professional would call ‘clinically significant difficulties’ in their day-to-day life. This means that they have difficulties with day-to-day life due to their autistic traits and need to use their own ways of overcoming those difficulties, or the people in their life need to help them to overcome them, or both. Being in a supportive environment makes a big difference to an autistic person’s wellbeing and quality of life. Learn more about how autism is diagnosed Other health conditions People who have these conditions can be more likely to also have autism: developmental disorders such as Attention Deficit Hyperactivity Disorder (ADHD) or learning disability muscular dystrophy Down's syndrome cerebral palsy epilepsy neurofibromatosis – a number of genetic conditions that cause tumours to grow along the nerves (the main types are neurofibromatosis type 1 and neurofibromatosis type 2) rare genetic conditions, including fragile X syndrome, tuberous sclerosis and Rett syndrome Arranging a Diagnosis in Leeds
How should we be talking about autism? Expand Many people who have been diagnosed with autism prefer using the term ‘autistic’ to describe themselves – this is known as identity-first language (for example, “I’m autistic”). They consider autism to be part of their identity, not a condition to be treated. For a long time people used the term ‘person on the autism spectrum’, known as person-first language (for example, “I’m on the autism spectrum”), and some people still prefer this. If in doubt, you can always ask an autistic person what term they’d prefer. In the past, autism was broken down into several different diagnoses, including: Asperger’s Syndrome autistic disorder Kanner’s Syndrome childhood autism atypical autism Pervasive Development Disorder Not Otherwise Specified (PDD-NOS) Because these diagnoses all had the characteristics of autism, they were removed and replaced with autism spectrum disorder (ASD), or autism for short. People also use the term ‘autism spectrum condition’ (ASC). The most important thing to bear in mind when we talk about autism, is to do it in a positive way. Don't use autism releated terms in a derogatory or insulting way, and don't accept it if you hear other people using this kind of language.
How can we better support autistic people? Expand Autistic people are a very diverse group, and their autism can affect each individual in different ways. This means there is no particular ‘right’ way to support autistic people. However, there are some things we can give consideration to in order to make life more manageable for autistic people: Environment. If you are trying to make things easier for someone with autism, it’s always worth thinking about the immediate environment. People with autism can become overwhelmed by sensory stimuli, Here are some key areas to consider: Is there a way to minimise distractions in the environment? – traffic noise, clocks ticking, fluorescent lights, buzzing fridges, fans etc. Can you close doors, windows, dim or switch off lights, us a quieter room and so on? Try to maintain a predictable, low-arousal environment, especially when giving someone information. People with autism may find it difficult to cope when things are changed within a predictable environment, so keeping spaces free of clutter and unnecessary adornments can be helpful. Of course, everyone is different, so don’t try and force changes upon a person’s own living space Try to manage group dynamics i.e. one person speaking at a time during meetings or group activities such as mealtimes, or watching TV Ensure provision of quiet areas or ‘time-out’ spaces. Let the person know where they can ‘escape’ to for some peace, quiet and processing time Communication. Out of all the different forms of communication, verbal communication is one of the most complex. People with autism process information differently, and may need extra time to process verbal information. Speech is also very fleeting compared to visual or written information, which can be a reason why some autistic people may repetitively seek reassurance about the same thing. You can think about: Is verbal communication the person’s favoured approach? Some people may prefer written communication, emails, text messages etc. People may find conversation difficult to process or socially difficult. If the person has difficulty reading or writing, can we convey the message using pictures, symbols or some form of communicative technology? Keep language clear and direct where possible. Don’t try to imply things as this can easily be missed or understood. People might take things very literally, so always say what you mean; try to keep things to one point at a time when imparting important information or asking someone to make an important decision Be patient – if someone isn’t responding, the might still be processing what you’ve communicating, they may be focussed on something else in the environment, or they have missed a social cue and not realise you are talking to them. Try to connect with people by using their name when initiating communication Bear in mind that some autistic people may struggle with open questioning, or may need to know what options are available to them before making a decision People with autism might struggle to express their feelings accurately through verbal communication. Looking at people’s actions, facial expressions and body language are far more telling than the words which come out of someone’s mouth Just because someone doesn’t speak or has limited speech, it doesn’t mean they can’t communicate; sometimes we just need to learn how to listen. Lack of speech also doesn’t mean that someone doesn’t understand or think. Many non-verbal people have very good understanding and are excellent problem solvers The person. It’s very common for non-autistic people to worry or feel anxious about how they should behave around people with autism. This is usually because people are nervous about causing upset, or getting things ‘wrong’. Yet one of the biggest complaints from autistic people is that they feel they are not accepted by others. These tips may help people to overcome this type of problem: Be yourself; don’t overthink how to behave but make sure you’re accepting, responsive and reflective. Think about how your own behaviour and expectations might be affecting the person; if someone appears to be getting anxious, think about whether you are using too many words or asking too much of someone Don’t be judgemental and accept individual ‘quirks’ – if it isn’t causing harm, how much of a problem is it? Many behaviours associated with autism are important coping strategies Be patient, be empathetic. Think about what that person might be having to process Many autistic people may use routines or rituals to help them cope with day-to-day life. It is important to try and support people to follow their routines, but this should be led by the person, not imposed on them. Although routines can be important, autistic people can still get bored and will often change things at their own pace Don’t take offence if someone doesn’t appear to respond in the way you expect. People with autism may need additional time to process things, and may not show an emotional response until much later. Also, just because someone doesn’t show a response, it doesn’t mean that they are not feeling any emotion If someone doesn’t follow the ‘rules’ explain their purpose. What effect might it have on the person or others if the rules aren’t followed? If you can’t answer that question, maybe it’s time to consider whether the rule is important at all Autistic people rely on others to be truthful, so be honest, even if the truth may hurt Be respectful and take a genuine interest. Recognise the positive aspects of the person Don’t be patronising. People with autism can take new information on board very well – it’s all about the delivery! Bear in mind that the world can be an overwhelming place for autistic people. Even small tasks and requests can feel like a huge challenge, so be patient, understanding and avoid putting the person under pressure. Sometimes, demand avoidance can have a severe impact on the life of the autistic person, and they may find themselves unable to take part in things they normally enjoy, or carry out essential tasks such as eating, drinking or personal care. This is known as Pathological Demand Avoidance, or PDA. You can read more about Pathological Demand Avoidance here.
How can we be more positive about autism? Expand Although it is important to acknowledge the difficulties faced by many autistic people, many of them would argue that they are more disabled by a lack of understanding and acceptance within society than the autism itself. Much of the work we do at Leeds Autism Services is concerned with promoting acceptance and empathy towards the people we support. It can be argued that, by focussing too much on the disabling effects of autism, we lose focus of the positive aspects. We need to change the way we think about autistic people. Here are just a few examples of how you can think about autism in a more positive light: Autistic people have great focus and are truly dedicated to their interests - It is a commonly held assertion that some of the greatest minds in history may have been autistic, and it is their obsessive focus, singlemindedness and differing ability to process information, which has probably led to their successes. Examples include Sir Isaac Newton, Albert Einstein, Alan Turing and more recently Greta Thunberg and Chris Packham. Autistic people are less likely to care what other people think about their interests - Autistic people will generally put their all into mastering their area of interest, regardless of whether or not anyone thinks it’s ‘uncool’. Autistic people have special interests because they find them fascinating, not because anyone tells them what to like. Autistic people can be hyper-observant and tend to live in the moment - Despite having a reputation for being withdrawn, autistic people actually tend to be more acutely aware of what is happening around them, and completely focussed on the here and now. This also enables some autistic people to take in huge amounts of information at once. Autistic people are more direct and straightforward - Most autistic people don’t shy away from telling the truth and saying things how they see them. They are less likely to have a hidden agenda, and have a tendency to be very honest Autistic people are less afraid of just being themselves - Many people with autism just don’t bogged down with peer pressure and social niceties, and have a refreshing attitude ‘this is me, and if you don’t like it, tough!’ Autistic people have fantastic memory and recall - How many non-autistic people can remember the details of a conversation which took place 5 years ago, name every Disney character that’s been in a film, or memorise an entire bus timetable? Due to differences in how memories are processed, similar feats are not uncommon amongst autistic people. Autistic people can challenge our preconceptions and open our minds to new ideas - Autistic people tend to think in very practical terms, and are more likely to think in terms of ‘cause and effect’ than worry about doing things just because that’s what is expected. Just because we’re used to doing something in a certain way, it doesn’t mean it’s the best way! Autistic people communicate in new and unique ways - People with autism have a reputation of being poor communicators, especially those with limited verbal skills. However, in reality they are more likely to develop their own, unique, way of communicating. They can be incredibly effective communicators; other people just need to take the time to learn their language Autistic people are fast visual learners - People with autism tend to be able to pick up new skills incredibly quickly when they observe someone else undertaking a task. Not only that, but once they’ve seen something once, they’ll remember it for life. People with autism are less judgemental - They will tend to focus on who the person is, rather than bothering about personal appearance, what bands someone is into, or who they hang around with. Autistic people tend to gravitate towards people who are kind-hearted, honest and trustworthy, rather than people who fit any particular social profile Autism Positivity Campaign
History of Autism Expand People tend to think of autism as being a modern phenomenon because it has become so much more prevalent in recent years; but it's actually been acknowledged for more than 100 years and our thinking about it has changed dramatically during that time. Here are some key events in autism history: 1908: The word autism is used to describe a subset of schizophrenic patients who were especially withdrawn and self-absorbed. 1943: American child psychiatrist Leo Kanner, M.D., publishes a paper describing 11 children who were highly intelligent but displayed "a powerful desire for aloneness" and "an obsessive insistence on persistent sameness." He later names their condition "early infantile autism” which is often referred to as “Kanner’s Syndrome” 1944: A German scientist named Hans Asperger describes a "milder" form of autism now known as Asperger's Syndrome. The cases he reported were all boys who were highly intelligent but had trouble with social interactions and specific obsessive interests. 1967: Psychologist Bruno Bettelheim popularizes the theory that "refrigerator mothers," as he termed them, caused autism by not loving their children enough. This is later proven to be completely false. 1977: Research on twins finds that autism is largely caused by genetics and environmental factors which cause biological differences in brain development. 1978: Lorna Wing identifies the ‘Triad of Impairment’ as a tool for diagnosing autism. This is thought to contribute to the sharp increases in autism diagnosis over the following 40 years and remains a core diagnostic tool to this day. 1988: The movie Rain Man is released. It stars Dustin Hoffman as an autistic savant who has a photographic memory and can calculate huge numbers in his head. Although the film raises public awareness of autism, people generally agree that it is not an accurate reflection of how life is experienced by people on the spectrum. 1998: A study published in The Lancet suggests that the measles-mumps-rubella (MMR) vaccine causes autism. This finding was quickly debunked and the researcher, Andrew Wakefield, is struck off the British medical register for falsifying research. There is now mountains of evidence that there is no link between autism and MMR or any other vaccine currently in use. Some people still believe there is a link and this continues to be a controversial area of debate 2005: Although previously identified, increasing amounts of research demonstrate sensory differences as a key aspect of the autism spectrum and this revolutionises the way we support and view people on the spectrum. Sensory differences are now widely referred to as ‘the 4th characteristic’. 2009: The Autism Act becomes part of UK legislation. The aim of the act is to ensure all public services are able to effectively meet the needs of autistic people. 2017: Leeds Autism Diagnostic Service (LADS) releases research that over a five-year period (2012-2017) they have diagnosed as many women as men. In the past, autism was thought to predominantly affect males. However, this is likely to be due to differences in how women with autism behave, and lack of knowledge and research around autism and women. It is predicted that national diagnosis rates will reflect the findings of the team in Leeds. Present day: People are starting to view autism not as a 'disorder', but as a different way of thinking, which can bring benefits as well as difficulties. This has led not only to increased understanding and acceptance of autism, but has also empowered people on the spectrum to shed the stigma that they may have carried in the past. Within some sections of the media and society, there are increased calls for us all to recognise different ways of thinking as an important part of our social fabric. The term coined to acknowledge these differences is ‘neurodiversity’ (credit: www.autism.org.uk)
Autism myths & facts Expand Facts and myths about autism Autism affects more than 1 in 100 people – fact. Over 700,000 people in UK are diagnosed as autistic, which means that 2.8m people have a relative on the autism spectrum. It is estimated that the figures are actually far higher People tend to 'grow out' of autism in adulthood – myth. It's a lifelong condition – autistic children become autistic adults. This myth is likely to stem from autistic people learning to ‘mask’ traits in order to fit in Autism affects both boys and girls – fact. There is a popular misconception that autism is simply a male condition. This is false, and it is likely that just as many females are affected Some autistic people don't speak – fact. Some autistic people are non-verbal and communicate through other means. However, everyone’s autism is different, and autistic some autistic people are very eloquent Autism is a mental health problem – myth. Autism is a difference in how your brain works. Autistic people can have good mental health, or experience mental health problems, just like anyone else People with autism don’t have empathy – myth. People with autism can be highly empathic, sensitive and emotionally intelligent. This myth is likely to stem from many autistic people not showing emotion, or having a delayed or inappropriate response. However, this is usually down to differences in how the brain processes information. Just because someone doesn’t show a response, Autistic people are geniuses – myth. Between a quarter and a half of all people with an autism diagnosis also have a learning disability. Others have an IQ in the average to above average range. 'Savant' abilities like extraordinary memory are rare, but differences in how autistic people process information, can lead to differences which appear amazing to non-autistic people Everyone is a bit autistic – myth. While everyone might recognise some autistic traits or behaviours in people they know, to be diagnosed with autism, a person must consistently display behaviours across all the different areas of the condition. Just having a fondness for routines, a good memory or being shy doesn’t make a person 'a bit autistic' Autism is a hidden disability – fact. You can't always tell if someone is autistic and some people would argue that autism needn't necessarily a disability at all (credit: www.autism.org.uk)