Autism is a spectrum of neurodevelopmental conditions, characterised by difficulties in the development of social relationships and communication skills, in the presence of unusually strong narrow interests, repetitive behaviour, difficulties in coping with unexpected change, and sensory hyper-sensitivity.

Causes: The causes of autism include a genetic predisposition (sometimes rare genetic mutations, but in many cases simply combinations of common genetic variations) interacting with prenatal and early postnatal environmental factors. These change the pattern of brain development and are evident from infancy. The ARC studies every aspect of the causes of autism, starting at conception (with genetics) and the developing brain prenatally, through to early social experience and factors that will promote wellbeing across the autistic person’s life.

Co-occurring Conditions: Autism can also involve associated specific learning disorders (such as dyslexia and dyscalculia) or intellectual disability. Previously it was thought that approximately half of autistic individuals are either minimally-verbal or have intellectual disability (ID). However, some recent studies suggest these rates of co-occurring conditions are changing, with ID or language delay only being seen in 20-30% of autistic individuals.

Terminology: Asperger Syndrome was a term that was used to refer to autistic people who had at least average IQ (so, no ID) and no language delay. This term was dropped by the international classification systems because of unreliable usage, and because of the revelations that Hans Asperger 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 ID; or autism plus ADHD, etc.,).

Autism also often co-occurs with medical conditions (e.g., gastro-intestinal pain or epilepsy), mental health conditions (e.g., depression or anxiety), and other neurodevelopmental conditions (e.g., dyspraxia).

The ARC opts not to use the term ASD (which stands for Autism Spectrum Disorder) because the term ‘disorder’ is often felt to be stigmatizing. The ARC strives to combat stigma towards autistic people and promote acceptance and respect for differences.

Some of these differences involve areas of strength (e.g., in attention to detail, memory for detail, and pattern-recognition or systemizing), which under the right conditions can manifest as talent or savantism.

The ARC suggests careful distinctions should be made between the terms ‘disability’, ‘difference’, ‘disease’, and ‘disorder’:

Autism always entails disability (which is the reason why the person seeks a formal diagnosis from a clinic). Examples of disability are in social communication skills. The diagnosis should serve as a passport to getting the right support.

Autism also always entails a difference (there is ample evidence for difference at the genetics level, in neural structures and function, cognition, and behaviour). Difference is also part of the neurodiversity model of autism – that there are many types of brains in the world, each with their own profiles of strengths and challenges, and every type of brain should be accepted, and the person shown respect for their difference.

Seeking a diagnosis is often a sign that the differences are interfering with the person’s ability to function, often because of a poor fit between the person and their environment, and often the challenges can be reduced my making the environment more autism-friendly.

The term disorder is used when a characteristic or symptom is wholly negative and the person would wish to be free of it. An example might be high levels of anxiety or gastro-intestinal pain.

The term disease is used in medicine when the mechanistic cause of a disorder is known. An example might be epilepsy with a known cause (e.g., arising from Tuberous Sclerosis or Neurofibromatosis).

In sum, all four Ds (disability, difference, disorder and disease) may apply to autism but these terms should be used carefully to refer to the particular symptom or characteristic in question.

We use identity-first language (autistic child, autistic people) rather than person-first language (child with autism, people with autism) as the majority of the autism community has expressed a preference for this. However, we recognise there are a variety of perspectives on preferred language and are not dogmatic about this. We do encourage reflection on use of language.

Our ethical position and our values: The ARC does not seek a cure for autism, because autism is part of a person’s genetic make-up, part of their identity as a person, and involves a mix of strengths and challenges. For the same reasons the ARC does not seek to prevent or eradicate autism, and opposes eugenics in all its forms in relation to autism.

The ARC does promote evidence-based interventions that target aspects of disability for which the autistic person and their parents are seeking support.

Examples might be psychological interventions such as music or speech therapy, tailored educational approaches, or Lego Therapy for promoting social skills and confidence. The ARC will also evaluate pharmacological treatments that target unwanted symptoms of autism (e.g., epilepsy, gastrointestinal pain, anxiety, or suicidality). But the ARC does not support interventions for autism itself as we are committed to the concept of neurodiversity.

In short, we work hard to evaluate promising interventions that might alleviate distress whilst ensuring that the areas of difference are supported to blossom and enable the autistic person to fulfil their potential and live a happy and rewarding life.

Further Reading:

The concept of neurodiversity is dividing the autism community but it needn’t. Scientific American.

Which terms should be used to describe autism? Perspectives from the UK autism community

Autism genetics and ethics. New Scientist.

The ARC provides information about its own research on this website but for practical advice relating to autism, we encourage you to contact the National Autistic Society (in the UK) or its sister organisation in your own country.

The ARC works closely with clinical services to ensure that its research informs, and is informed by, clinical practice; and works closely with the autism community to ensure they shape research and that research remains relevant to their priorities. Such dialogue builds trust between scientists and autistic people and their families, and builds shared values.