About Autism What is autism What is Autism 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. It is often referred to as the ‘autism spectrum’. People with autism share three main areas where their development will differ from neurotypical people. These three areas are commonly referred to as the 'triad of impairments' or simply ‘the triad’. The three areas consist of differences in communication, social understanding and social imagination. People with autism also have differences with how they process information and sensory stimuli. 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. It can be hard to create awareness of autism as most people with the condition do not 'look' disabled, and many people with autism learn to mask or hide their differences; parents of children with autism often say that other people simply think their child is naughty, while adults find that they are often misunderstood. 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 Some people with autism can benefit from a timely diagnosis and access to appropriate services and support. However, many people autistic people do not require any more support than a neurotypical person. According the National Autistic Society between 44% - 52% of autistic people may have a learning disability and between 48% - 56% of autistic people do not have a learning disability. Not all autistic people would describe themselves as having a disability, disorder or condition at all. In fact, for some people, autism enables them to do and achieve things beyond the abilities of many non-autistic people. Why do people call it the 'autistic spectrum'? 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." https://www.psychologytoday.com/blog/spectrum-solutions/201012/here-are-10-great-autism-spectrum-quotes 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. Here is 'Amazing Things Happen' a great short film by Alexander Amelines which aims to promote understanding and acceptance of autism in future generations. Common challenges that autistic people may face Living with autism is very debilitating for some people, and can have a massive impact on the autistic person and those close to them, such as family members, friends and carers. 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. Some of the most common issues people with autism have relate to difficulties with forming and maintaining relationships, having equal access to opportunities and being accepted and understood by other people. This can lead to increased levels of social isolation and poor mental health. According to the UK’s biggest autism charity, The National Autistic Society: 34 % of autistic children say the worst part of school is being picked on 17% of autistic children have been suspended from school 64% of parents of autistic children, say the school setting is not appropriate for their child’s needs 70% of autistic adults say they aren’t getting enough support from social services At least 1 in 3 autistic adults are experiencing severe mental health difficulties Only 32 % of adults with autism are in some kind of paid work. Only 16% are in full time paid employment (source: www.autism.org.uk) 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. History of Autism 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 disability but as a different way of thinking, which can bring both difficulties and benefits. 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) 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 it autism itself isn’t necessarily a disability at all (credit: www.autism.org.uk) Being Positive About Autism 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 LAS 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 Supporting People with Autism 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 everyone with autism. 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 needs to be in place 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!