Georgie Fenn, writes most of our news articles and social media posts.
World Autism Awareness Week and Autism Awareness Month
This week is World Autism Awareness Week, and the National Autistic Society (NAS) has launched a campaign to help people understand what autism is and how it impacts on everyday life for those living with autism and their families.
Its campaign, Too Much Information, aims to educate the public and dispel misinformation. NAS says that, while 99.5% of people in the UK have heard of autism, far fewer people have adequate understanding of the daily challenges and hurdles that autistic people face.
NAS says 84% of autistic people report that they feel judged by others as ‘strange’ and this lack of understanding and, by extension, lack of support, can leave as much as 79% of autistic people report feeling socially isolated. A further 73% said they have consciously changed the way they are in order to reduce social stigma.
For more about the Too Much Information campaign, and to watch a video interpretation of how it feels to be inside the mind of an autistic child, visit the NAS website.
April is also Autism Awareness month – how much do you know about autism?
What is autism?
According to NAS, autism is a lifelong neurological condition that affects how a person perceives and interacts with the world around them. While neurotypical people have the ability to subconsciously filter out unnecessary sensory information, such as one person’s voice in a room full of people talking, people with autism are much less able to do so, and it can feel like every sense is at full volume all at once. Autism can mean everyday situations, like a trip that involves navigating a busy railway station or shopping centre – an event that most of us find routine - can be unbearably overwhelming.
Since autism is a spectrum disorder, the characteristics of autism may present as a wide variety of symptoms and combinations of symptoms. While many severely autistic people may require a regular carer and help with basic tasks, lots of people on the autism spectrum are able to lead full, independent and successful lives – every person on the spectrum is different and every person has differing needs.
Despite being far from a ‘general’ condition, the term autism is often used as a general term that encompasses a range of autistic spectrum disorders (ASD), including Asperger’s Syndrome – a milder form of autism. A neurological condition, the brains of those with ASD are – to put it simply – wired differently, and as a result they tend to unanimously experience difficulty with social interaction, both verbal and non-verbal communication and sensory processing, as well as various additional problems.
More than 1 in 100 people are said to have some form of ASD, and there are around 700,000 people diagnosed in the UK, but actual numbers may be higher as some may be living with a milder, undiagnosed form. While often considered a condition affecting young boys, with an estimated male to female ratio of 4:1 at the high-functioning end, the male to female ratio on the lower end of the spectrum is around 1:1.
According to some experts, the numbers of females diagnosed with high-functioning forms of autism appear to be increasing and some suggest this increase may be attributable to failed diagnosis. Girls and women are said to have an enhanced ability to copy or mimic socially appropriate behaviours, thereby masking some of the signs of ASD from an early age. For this reason, some high-functioning autistic females may ‘slip through the net’ of diagnosis and are increasingly diagnosed much later in life. It is hoped that, as more is understood about how ASD affects females, that girls will be diagnosed at an earlier age, thereby avoiding some of the emotional and practical problems experienced when left without proper support.
Some experts have also speculated that another contributory factor may be that much of the early research involved the study of autism in boys - therefore much of the understanding and knowledge has previously been based on how the condition affects boys – girls are said to present differently, and understandably so, since autism is a neurological condition and the female brain is understood to function differently to the male brain.
Some common problems encountered by the majority of autistic people include:
Autistic people are usually under or over sensitive to sound, light, tastes, smells, textures and sensations. Too much sensory stimulation, for example, in a very busy public place such as a train station or supermarket, can make an autistic person feel increasingly anxious, overwhelmed and panicky, which can result in sensory overload, commonly referred to as a ‘meltdown’ or inability to continue functioning. Some may become incredibly upset, loud or angry and may need time to reset and calm themselves somewhere quiet.
People with autism may also be unable to tolerate certain food textures, for example mashed potatoes or foods with seeds and may remove labels and tags from clothing as the sensation of the label rubbing against the skin can be unbearable, whereas most neurotypical people wouldn’t even notice.
Many autistic people across the spectrum develop coping behaviours to help themselves deal with the anxiety and stress associated with dealing with everyday life. While some on the high-functioning end of the ASD spectrum may have learned to practice internal mental techniques, carried out with little or no outward sign, others might rely on subconscious physical habits – known as flapping or stimming, whereby a person may pace the room, make repeated hand or other body movements or make sounds, stop talking or even talk incessantly, or sometimes repeat the same word or sentence over and over (echolalia) in order to distract themselves from the situation and soothe their anxiety.
Some autistic people may display facial tics or involuntary facial movements when under stress and Tourette’s Syndrome can also accompany autism – when both physical and verbal tics are present.
Many people with ASD rely heavily on a fixed routine and can find any change or deviation in that routine incredibly stressful and unsettling. A possible indication of ASD in children is said to be repetitive habits, such as arranging toys in very specific orders, watching the same episode of a TV show or film repeatedly or developing a fixed obsession in one particular area of interest, for example memorising dinosaur names and information. While all of these behaviours could be completely normal, there are tests which can differentiate between what could be deemed ‘normal’ behaviour and exceptionally repetitive or restrictive behaviours.
Autistic people have problems communicating and interacting with others, both in terms of their own verbal language and when interpreting body language and other non-verbal address, such as tone of voice or facial expressions. This can lead to problems forming and maintaining relationships with other people and frustration. Those at the more severe end of the spectrum may be completely non-verbal and sometimes the only verbal communication is with very close family members or pets.
People with Asperger’s Syndrome, a milder form of autism, frequently present as high-functioning, with average or above average intelligence or IQ.
People who have high-functioning Asperger’s often learn to mimic social behaviour during their formative years and, while working very hard to fit in with what others may deem ‘normal’, everyday life can remain extremely difficult. They tend to respond honestly rather than rely on conditioned subtlety or tact, which while at times refreshing, this honesty can prove problematic particularly when it comes to maintaining relationships and living and working alongside others. Those who have the condition may feel and even act like a ‘square peg in a round hole’, and are more likely to be bullied and manipulated at school and even in the workplace. Particularly in the case of those who are undiagnosed and therefore without support, this can lead to isolation and withdrawal from relatives, social groups and activities and may help to explain why severe depression and anxiety often accompany the condition. As more is understood about Asperger’s, many people are now being diagnosed as adults – a diagnosis that is often said to be met with relief, since a firm confirmation may go a long way towards explaining much of the difficulties and struggles faced throughout life.
Psychologists diagnose autism through direct observation, the observations of parents and others, such as teachers and through extensive questionnaires relating to behaviours. However, much of the diagnostic material that exists currently relates to diagnosing the condition in children, and diagnosing adults often involves asking their parents to recollect early childhood behaviours – which is understandably not always possible.
For more information about diagnosing children and adults, visit the NAS website.
While lots of people who have Asperger’s may appear outwardly ‘normal’ or neurotypical, there is much more going on beneath the surface and many have the ability to hyper-focus on a specific subject and may become highly-skilled or knowledgeable in a particular field. Many people with Asperger’s are highly creative and often drawn to the arts, the sciences or mathematics or perhaps may focus on investing countless hours on learning to play an instrument to an advanced level. Some become so skilled or knowledgeable in a particular area that they are described as having savant syndrome – when a person becomes so exceptionally skilled or learned in a specific field that they may appear almost superhuman.
Jacob Barnett, the child astrophysicist and theoretical physicist who has an IQ of 170 was put forward for a PHD research role at the age of just 12. Jacob is said to have taught himself advanced mathematics, including calculus, trigonometry, geometry and algebra in just one week and has developed his own expanded version of Einstein’s theory of relativity.
Derek Paravicini is a British pianist who, despite being born prematurely at just 25 week’s gestation and consequently losing his sight, had taught himself a large number of complex piano pieces by the time he was just four years old. Despite some severe learning difficulties, possibly linked to his premature birth, Derek has a remarkable ability to hear a piece of music and immediately be able to play it back in any key, with added improvisation and flair. He performed his first public concert with the Royal Philharmonic Pops Orchestra aged nine.
Ellen Boudreaux is another savant, who also, despite being blind since birth, has an exceptional ability to play any song back perfectly after hearing it just once. Ellen is also able to use chirping sounds as a form of echolocation – such as that used by bats and dolphins – in order to avoid bumping into her surroundings. Ellen also has a remarkable internal clock, after her mother let her listen to a talking clock on the telephone at the age of eight to combat her fear of telephones, Ellen has kept an internal count of days and minutes and can give an accurate time and minute of the day, despite never having seen a clock or had the concept of time explained to her.
Famous people reported to have Asperger’s Syndrome
While there are a significant number of successful academics, professors, authors and scientists who have Asperger’s, some well-known people who are reported to have high-functioning Asperger’s include actor and comedian Michael Palin, actress Daryl Hannah, musician Ladyhawke, actor Paddy Considine and Satoshi Tajiri, creator of popular computer game Pokémon. Microsoft founder and philanthropist Bill Gates’ personality has also been compared to that of someone with Asperger’s.
First identified in 1944 and formally considered a neurological condition in 1981, many hugely influential people prior to then are also said to have signs of Asperger’s. Some experts believe Albert Einstein, Marie Curie, Charles Darwin and Isaac Newton may have had the condition as these scientists are said to have displayed what we now know are symptoms of Asperger’s Syndrome.
Other influential historical figures that may have had Asperger’s, according to some experts, include film director Alfred Hitchcock, composer Wolfgang Amadeus Mozart and author Jane Austen.
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