Autism is a lifelong developmental disability which affects 1 in 100 people in the UK. It affects the way a person communicates and how they experience the world around them.
Some people challenge the idea of autism as a disability and see it as no more than a different way of viewing and experiencing the world.
It’s a spectrum
Autism is described as a spectrum condition. This means that while people with autism, including Asperger’s Syndrome, share certain characteristics, they will be highly individual in their needs and preferences. Some people with autism are able to live relatively independent lives but others may face additional challenges, including learning disabilities, which affect them so profoundly that they need support in many areas.
There’s a saying popular among people with autism and their families: ‘If you’ve met one person with autism, you’ve met one person with autism.’ The condition affects everybody differently, and people with autism, just like people everywhere, have all sorts of individual personalities, tastes, outlooks and beliefs. Autism can impact on a great deal of someone’s life and experiences, but it’s never the whole story about them.
How does autism affect people?
In the case of autism, the typical problems are difficulties with communication and finding it hard to be flexible – sometimes including having sensory difficulties that restrict what people are able to do. It’s a condition that’s still being studied and, while we understand a lot more than we did a generation ago, there’s still a lot to learn.
The difficulties autism creates are categorised in a variety of different ways, so you may encounter different descriptions in different places, but they cover the same basic ground. Here, we’ll use the model found in the DSM-5 (Diagnostic and Statistical Manual), which classes them as two main issues: social communication/interaction, and repetitive behaviours and activities:
Social Communication and Interaction
Autism can make it much harder for someone to talk to and socialise with other people. Exactly how much depends on the individual, but almost everyone with autism finds it a struggle to a greater or lesser degree.
A common early sign of autism is that a child doesn’t start to speak at the usual age, or sometimes (though certainly not always) only speaks in ‘echolalia’ – repeating apparently random sounds or phrases over and over with no apparent interest in their meaning, more as if they were singing a series of notes than saying a sequence of words. Some people with autism never really master language but many eventually do.
Children with autism often talk in a less ‘conversational’ way than non-autistic children – speaking to ask for what they want or thinking aloud about their interests, but not chatting for the sake of chatting. They can also find it difficult to understand implication, hints or irony, and can take instructions very literally (for instance, being told, ‘Don’t touch the toilet’, and not realising that this means ‘Don’t drop toys down it either’.)
Autism often involves difficulties in listening and/or concentration skills: a child with autism can sometimes seem either unresponsive or easily distracted because of sensory issues or because their social ‘presence’ isn’t as responsive to other people as the average child of their age.
People with autism can often find it difficult to read another person’s facial expression and body language, and can, as a result, seem oblivious or callous – though in reality, they simply have missed or misread the signals. The real problem is that autism interferes with both the ability to notice and interpret other people’s feelings, and also the ability to sense them. The latter skill is technically described as ‘social imagination’: a person who has problems with social imagination can have a hard time understanding that someone else might have a different perspective from them - or if they know it in theory, they may still struggle to imagine what it might be.
People with autism are often described as lacking empathy, but this can be misunderstood. Actually, it’s not that people with autism can’t ‘feel for’ others; in fact, some autistic people say that they feel so strongly for others that they seem uncaring because they freeze up, overwhelmed. It’s just that it’s hard for a person with autism to tell what someone else is feeling, or if they do, how to respond appropriately.
Restricted and Repetitive Behaviours and Activities
People with autism may be prone to developing rituals. They can get very attached to doing things the same way each time, and can get extremely upset if their routines are disturbed. As children, their play skills can be limited, and they often don’t quite know what to do with toys, particularly if the toys are for ‘pretend play’.
It’s common for children with autism to play in a repetitive way – for instance, rather than pushing a toy car along the floor and making ‘brrm-brrm’ noises, they sit spinning one of its wheels and watching it go round. Some children may organise their toys in rows rather than playing with them. Their play skills may seem at a younger level than the child’s chronological age.
As well as being inclined to rules and rituals, it’s common for a person with autism to have difficulty processing the information that their eyes, ears, noses, muscles and skins are sending to the brain.
These sensory issues are basically a question of certain senses being either hyper (or over) sensitive or hypo (or under) sensitive. Highly sensitive hearing is common, for instance, meaning that certain noises (like dogs barking or babies crying) are unbearable; likewise, a lot of children with autism get obsessed with spinning objects or flashing lights, which can be a sign of highly sensitive vision. If a sense is ‘turned up’ in a child with autism, they will be vulnerable to getting overstimulated and having a meltdown; if it’s ‘turned down’, they may engage in eccentric-looking behaviours to shake it up
Sensory issues can also cause difficulties in basic care. Food issues are very common with autism; though part of the problem may be about flexibility and anxiety in the face of the unfamiliar, it can also be that they either hate or adore particular textures. For instance, one child may eat nothing but soup and smoothies because the chewing sensation unsettles them, while another may want nothing but raw fruit and veg because they can’t get enough of that crunch.
It’s also common for people with autism to have problems with proprioception – that is, the body’s ability to sense its own position and movements. (Am I sitting or standing? Am I upside-down or right-side-up? Am I falling? What are my legs doing under the table? And so on.) Children with autism very often love to jump on trampolines, turn in circles, walk on tiptoe or be swung around: all of these are ways of stimulating the proprioception.
Perhaps because of these difficulties with proprioception, children with autism often have motor issues as well, such as being late to crawl, walk, run and so on, and sometimes being clumsy. It’s difficult to move your body around deftly if you can’t clearly feel where it is and what it’s doing.
Some people with autism are lucky enough to have only mild sensory issues, if any. For others, it’s an ongoing strain because it’s hard for them to be comfortable outside a highly controlled environment.
Life with autism
Research suggests that early intervention can often make a huge difference to the lives of people with autism. Some individuals grow up to manage quite independently (with or without early support), but even the most independent people are still dealing with a complicated condition. The right help can be incredibly important, and the sooner they get it, the better.
In the bigger picture, it’s our vision at Ambitious about Autism that we can build towards a society that recognises children and young people with autism for who they are: valuable human beings, deserving of support and full of potential.
Society is far from fully accepting autism yet, but we make progress all the time, and we believe that by working together and believing in people – both in our cherished children and young people and in the power of ‘ordinary’ people to make the world a better place – we can all accomplish great things. It’s a better time to have autism than it’s ever been, and with hope and effort, we know that times can get better still.