What is autism?

Autism is a set of neurodevelopmental differences and disabilities that are estimated to occur in 2 to 3 percent of people worldwide. Autistic people experience and respond to the world around them in a different way.

What are the strengths of autistic people?

Their unique differences can be advantageous – many autistic people have strengths in attention to detail, memory for detail, pattern recognition, and the ability to focus on a single topic for long periods. Many also strive for precision and perfectionism, and are very honest with their opinions. The strong pattern recognition ability often takes the form of if-and-then logical thinking, which has been argued to be the basis of invention. Autistic people have made remarkable contributions to the fields of music, art, science, engineering, sport, craft, mathematics, literature, philosophy, cooking, dance, environmental politics, among other fields. Greta Thunberg, Max Park, Derek Paravacini, and Temple Grandin are some examples of famous autistic people.

What are the disabilities autistic people experience?

Autistic people often also have disabilities – for example, one in three autistic people have general learning disabilities, also known as intellectual disability, where their measured IQ is below the average range. About one in ten autistic people are also minimally speaking, where their vocabulary is less than 30 words. Autistic people often have specific learning difficulties such as dyslexia, dyspraxia, attention deficit and hyperactivity disorder (ADHD), and executive function (organisational and planning) challenges, even if they do not have general learning disabilities or language delay.

Autistic people often also have disabilities in social and communication skills. They can struggle in coping with unexpected change and, sometimes, can become overwhelmed by too much information. Autism is also associated with sensory hyper-sensitivity – where a person experiences the world more intensely than others, and notices more small details. This can be difficult and distressing in crowded, noisy environments. In these situations, sometimes autistic people can experience a meltdown (where a person may show extreme behaviours like shouting, self-harm, aggressive behaviour and repetitive behaviours) or a shutdown (where a person may either partially or completely withdraw from the world around them).

Difficulties with communication can be misinterpreted by non-autistic people, and this can be a challenge in relationships and at work or in other social groups. High levels of sensory stimulation and a lack of structure or routine can make it very difficult for some autistic people to cope with tasks that other people find easy. Unfortunately, these challenges can sometimes lead to autistic people suffering distress. A failure to accommodate to autistic people’s needs can lead them to face worse healthcare outcomes, a lower quality of life, higher rates of poor mental health, and even abuse and discrimination.

What are the support needs of autistic people?

The challenges faced by autistic people vary widely. We refer to autistic people with a high level of independence as having ‘low support needs’ and to those who require more help as having ‘high support needs’. These are not fixed categories – an individual can be between these two, or fluctuate between the two at different points in their life or in different scenarios.

Some autistic people have consistently high support needs and are unable to live independently. This may be the result of intense social anxiety, due to challenges with executive function, due to cognitive differences such as ADHD, intellectual disabilities or language disabilities, or because of self-injurious behaviours that the person is unable to control.

In some cases, autistic people with high support needs can articulate and advocate for themselves, but in other cases they cannot. Everyone has the potential to lead fulfilling and happy lives when properly supported. It is therefore important that those with high support needs are able to access high-quality support services.

What causes autism?

Genes play a major role in the development of autism. Although some rare genetic mutations have been identified, these are present in fewer than 10% of autistic people. In other autistic people, autism is instead partly caused by a complex interaction between hundreds of common genetic variations. Autism does not just have a genetic cause. Non-genetic (or environmental) factors also play a role. One example is the prenatal environment, such as sex steroid hormone levels (e.g. testosterone) in the womb, which may also influence whether or not a person becomes autistic. We also know that maternal factors, such as polycystic ovary syndrome or gestational diabetes, increase the likelihood of having an autistic child; both of these conditions alter hormonal levels in the mother. Ongoing research is continuing to understand the complex causes of autism.

Which other conditions are associated with autism?

As mentioned above, it is common for autism to occur alongside specific learning difficulties, such as dyslexia and dyscalculia, or alongside a general learning disability, which is where the person has a measured IQ below the average range. About a third of autistic people have general learning disabilities. Around 25% of autistic people speak few or no words, although they may still understand speech and communicate through alternative means.

Certain medical and mental health conditions, such as gastro-intestinal illnesses, epilepsy, depression, eating disorders and anxiety, also occur at higher rates in autistic people. Untangling the mechanisms that link autism with these conditions is one aim of our research, with a view to developing more effective treatments where they are wanted and needed.

Does autism need treatment?

Autism is an inherent part of a person’s identity and individuality. It is not something that needs to be treated or cured. Some aspects of autism can cause disabilities, and support and intervention can be offered to help people to manage these.

Support can take many forms. It can include early intervention to help autistic children to develop confidence, or better language and social skills. It can involve adjustments to educational settings and workplaces to make them less stressful to be in – such as removing sources of overstimulation and providing safe spaces for autistic people to go to if they are feeling overwhelmed. It can include providing support in schools that is individualised to each person, to promote their learning.

Medical and therapeutic support can also be offered for aspects of autism which are causing distress to an individual. Examples might be epilepsy or anxiety. This is not treating autism, but treating symptoms that cause distress, and should only be offered when these are wanted by an individual.

Is Asperger Syndrome different to autism?

Asperger Syndrome was a term that was used to refer to autistic people who did not have a learning disability or delayed language. This term was dropped by the international classification systems because of unreliable clinical usage, and because Hans Asperger, the paediatrician after whom this diagnosis was named, was revealed to have colluded with the Nazis during WW2.

Instead, today we simply use the term autism to refer to the whole autism spectrum, and then list co-occurring conditions (e.g., autism plus epilepsy; or autism plus learning disability; or autism plus ADHD, etc.,), and list a person’s support needs. This allows us to be specific about individuals who often need very different adaptations or care.

Some people who were diagnosed as having Asperger Syndrome still identify with the term. In such cases, we support describing individual autistic people by their own preferred terminology. However, when referring to autistic people more generally, we now use the singular umbrella term of autism.

Are there sex differences in rates of autism?

Autism is more commonly diagnosed in males but this may reflect many factors, including autism being harder to identify in girls. In 1978, the sex ratio in autism diagnosis was 4 males for every 1 female but now approaches 2:1. This reflects that girls and women are now being diagnosed more often. Under-diagnosis in females may be because they are more likely than males to mask their autism by copying the behaviour of their neurotypical peers. Another factor that may have played a role in under-diagnosis of females is that the diagnostic tools may be biased towards male patterns of behaviour. Research is exploring these social factors as well as biological factors such as the interaction between genetics and prenatal sex steroid hormones, which change brain development.

Do autistic people lack empathy?

Empathy has at least two components: cognitive and affective empathy. Cognitive empathy, sometimes called ‘theory of mind’, is the drive to identify another person’s thoughts and feelings. Affective empathy is the drive to respond to another person’s thoughts and feelings with an appropriate emotion. Autistic people often struggle with cognitive empathy, which can make it confusing for them to navigate social relationships and conversation. However, autistic people usually have no difficulties with affective empathy, so that once it is pointed out to them how someone else is feeling, they show care and concern for others.

Is autism a difference, disability, disorder or disease?

Autism is often described as a disorder. One major reason for this is because the American Psychiatric Association, who publish the widely used diagnostic guide DSM-5, refer to autism as ‘Autism Spectrum Disorder’. We agree with many autistic people that using the term disorder, which implies that being autistic is wholly negative, is disrespectful and is also misleading, since autism includes strengths, not just challenges. We encourage reflection on this terminology in relation to the “Four Ds”:

A difference is a value-neutral term for any trait that shows variation in the population. A difference could be an advantage or a disadvantage, but could also be neither, simply a variation. A highly systematic mindset is an example of a potentially advantageous difference seen in many autistic people, and stimming behaviours are an example of a difference that may not confer an advantage but should just be accepted as a difference. Sensory hypersensitivity may be an example of a difference that can be disadvantageous as it can sometimes lead to becoming overwhelmed.

A disorder is a symptom or condition (we use these medical terms deliberately) that is wholly negative and debilitating but where the cause is not yet known. Individuals with a disorder would usually want to be free of it. Gastrointestinal problems are an example of a disorder.

A disease is a disorder but where the biological cause is known. Some forms of epilepsy in autistic people are diseases, such as epilepsy occurring as a result of neurofibromatosis, where genes cause tumours to grow on nerve tissue.

A disability occurs when a difference affects an individual’s ability to function in everyday life. This may sometimes reflect the individual’s inherent capabilities, such as when a person has a general learning disability, but can also reflect that their physical or social environment has not provided reasonable adjustments for a person’s difference. The term ‘disability’ is a call for support and accommodation to allow the person to live life to their full potential. It qualifies them for support under the Equality Act in the UK, and equivalent legislation, in other countries.

Language

The ARC was one of the first research organisations to question whether it is appropriate to characterise autism as a disorder. For over 20 years, we have argued that this is inaccurate, that it reinforces negative stereotypes about autism and that it is disrespectful of autistic people themselves. We do not use the term ‘Autism Spectrum Disorder (ASD)’ in our communications, and where possible omit it from our research papers. We encourage our co-authors to do the same, although we are not always successful in this. Rather, we just use the term ‘autism’ instead.