What is Autism? A brief guide...

This week, I and some peers began our second year of delivering 'autism' workshops to 4th-year medical students at the local university.  Misunderstandings about autism persist in society, in spite of the increasing awareness and 'popularisation' of the condition.  Sadly, a lot of this stems from stereotypical depictions in books, films and TV.  It isn't helped, though, by the descriptors in the DSM-5 (Diagnostic and Statistical Manual on Mental Disorders - 5th Edition), which is the main text that medical professionals still refer to and go by.  Many of these are out-of-date, misconceived  - or just plain wrong! They still focus on the ideas of 'disorder', 'impairment', 'dysfunction', and talk about 'high-functioning' and 'low-functioning' autism - all of which terminology is now being challenged and overturned in the light of research.  In our workshops, we - as 'experts by lived experience' - try to give better insights and understanding to the students so that they can go into their profession with a better knowledge of the condition than they had before.

I've produced a leaflet for the students, which I thought I'd share here for anyone who's interested.

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WHAT IS AUTISM?

Autism is a neuro-developmental condition (not a mental disorder) that affects how a person communicates with and relates to other people, and how they experience the world around them.  Autistic people see, hear and feel the world differently to other people because their neurological make-up is different (they have 'neurodivergent' brains, whereas non-autistic people have 'neurotypical' brains). If you are autistic, you are autistic for life.  Autism is not an illness or disease and cannot be 'cured'.  Often people feel that being autistic is a fundamental aspect of their identity, just like their sexuality.

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in widely different ways - so no two autistic people will present in exactly the same way. Some autistic people also have learning disabilities, mental health issues or other conditions, meaning they may need different levels of support.

Roughly a half of all autistic people have no learning disabilities and may be of average or above-average intelligence.  They may be educated, have a career, and have a home and family of their own.  They will, though, still have difficulties and challenges as a result of their condition.  Some famous autistic people include actors Paddy Considine and Anthony Hopkins, musicians David Byrne and Gary Numan, naturalist and TV presenter Chris Packham, singer Susan Boyle and environmental activist Greta Thunberg.

HOW COMMON IS AUTISM?

Autism is much more common than most people think. There are around 700,000 autistic people in the UK - that's over 1 in 100.

HOW DO AUTISTIC PEOPLE EXPERIENCE THE WORLD?

Some autistic people say the world feels overwhelming and this can cause them considerable anxiety.  Understanding and relating to others, and taking part in everyday family, school, work and social life can be harder for autistic people - and neurotypical people may likewise struggle to build a rapport with autistic people.   Autistic people may wonder why they are 'different' and feel that their social differences mean people don't understand them, and possibly don't particularly like them.  Physically - externally - autistic people often do not seem any different to anyone else. Some parents of autistic children say that other people simply think their child is naughty, while adults find that they are misunderstood. Social anxiety is a common problem for autistic people.

SOCIAL COMMUNICATION

Autistic people can have difficulties interpreting both verbal and non-verbal language like gestures or tone of voice. Many have a very literal understanding of language, and think people always mean exactly what they say. They may find it difficult to use or understand:

• facial expressions
• body language
• tone of voice
• jokes and sarcasm

They may also have difficulty in maintaining eye contact.  Some may be non-verbal, or have fairly limited speech. They will often understand more of what other people say to them than they are able to express, yet may struggle with vagueness or abstract concepts. Some autistic people benefit from using, or prefer to use, alternative means of communication, such as sign language or visual symbols.  Some are able to communicate very effectively without speech.

Others have good language skills, but they may still find it hard to understand the expectations of others within conversations, perhaps repeating what the other person has just said (this is called echolalia) or talking at length about their own interests.  They might also say things that come across as rude, blunt or inappropriate.  They might also miss normal conversational cues and try to join in with conversations at inappropriate times.  It often helps to speak in a clear, consistent way and to give autistic people time to process what has been said to them. Patience may be necessary.

SOCIAL INTERACTION

Autistic people often have difficulty 'reading' other people - recognising or understanding others' feelings and intentions - and expressing their own emotions. This can make it very hard for them to navigate the social world. They may:

• appear to be insensitive
• seek out time alone when overloaded by other people
• not seek comfort from other people
• appear to behave 'strangely' or in a way thought to be socially inappropriate (covering their ears, 'stimming', etc)

Autistic people may find it hard to form friendships. Some may want to interact with other people and make friends, but may be unsure how to go about it.

REPETITIVE BEHAVIOUR AND ROUTINES

The world can seem a very unpredictable and confusing place to autistic people.  They often prefer to have a daily routine so that they know what is going to happen every day. They may want to always travel the same way to and from school or work, or eat exactly the same food for breakfast.  The use of rules can also be important. It may be difficult for an autistic person to take a different approach to something once they have been taught a particular way to do it. People on the autism spectrum may not be comfortable with the idea of change, but may be able to cope better if they can prepare for changes in advance. Many autistic people use 'stimming' (stimulation) behaviour to reduce anxiety.  Examples might be rocking, tapping, pacing, tongue-chewing, fidgeting, hand-flapping, using widget spinners, snapping their skin with rubber bands, etc.

HIGHLY-FOCUSED INTERESTS

Many autistic people have intense and highly-focused interests, often from a fairly young age. These can change over time or be lifelong, and can be anything from art or music, to trains or computers. An interest may sometimes be unusual, too. For example (based on an actual case), the person might not like throwing anything away, so might hoard huge amounts of rubbish at home. With encouragement, they could develop an interest in recycling and the environment.  Many autistic people channel their interest into studying, paid work, volunteering, or other meaningful occupations. Autistic people often report that the pursuit of such interests is fundamental to their wellbeing and happiness.

SENSORY SENSITIVITY

Autistic people may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain. For example, they may find certain background sounds, which other people ignore or block out, unbearably loud or distracting. This can cause anxiety or even physical pain. Or they may be fascinated by lights or spinning objects.

FACTS, FIGURES AND MYTHS ABOUT AUTISM

Lack of general understanding about autism can make it difficult for autistic people to have their condition recognised and to gain access to the support they need. Misconceptions can lead to some autistic people feeling isolated and alone. In extreme cases, it can also lead to abuse and bullying.

• 34% of children on the autism spectrum experience bullying at school.
• 63% of children on the autism spectrum are not in the kind of school their parents believe would best support them.
• 17% of autistic children have been suspended from school; 48% of these had been suspended three or more times; 4% had been expelled from one or more schools. 
• 70% of autistic adults say that they are not getting the help they need from social services.
• Only 16% of autistic adults in the UK are in full-time paid employment, and only 32% are in any kind of paid work. 
• The average life expectancy of an autistic person is 54.  The main cause of early death is suicide.

MYTH - Autistic people are 'anti-social'.  Many autistic people would like to have friendships and relationships.  However, social communication difficulties may mean they lack the proper understanding of how to initiate such things.  Social isolation can be a major problem for autistic people, often leading to mental health issues.

MYTH - People with autism lack empathy. People with autism are often 'empaths' and are acutely sensitive to the emotions of others, but may lack the capacity to respond in a way that seems appropriate.  This can make them seem 'cold' or 'distant'.  Also, because many autistic people have difficulties with social communication (facial expressions, voice tone, body language, etc), they can easily misunderstand or misinterpret the emotions of others.

MYTH - Autism is a mental health problem.  Autism is a neuro-developmental condition. It’s a difference in how the brain works.  People with autism have 'neurodivergent' brains, whereas non-autistic people have 'neurotypical' brains. Autistic people can have good mental health, or experience mental health problems, just like anyone else - although one in three autistic adults experience severe mental health difficulties due to a lack of proper support and understanding. 

MYTH - All autistic people have a special talent. Just under 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.  Also, autistic people with learning disabilities can have 'savant' abilities, whereas a large proportion of autistic people without learning disabilities (Asperger's Syndrome) have no special abilities.

MYTH - Childhood vaccinations cause autism.  The 'research' surrounding this scare story has now been thoroughly disproved.  There is no causal link between vaccination and autism.  People are born with autism.

MYTH - Everyone is somewhere on the autism spectrum. 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, being shy or having a preference for lone activities doesn’t make a person 'a bit autistic'.  Similarly, having conditions like dyslexia, dyspraxia and ADHD does not automatically mean that a person is autistic.  As with mental health problems, these conditions can affect autistic and non-autistic people alike.