At the ARC, we ensure that participants in our research are first and foremost recognised as people with human rights, agency and value. Whilst this should go without saying, we are aware that, in the history of science more broadly and in autism research in particular, this has not always been a given. We also know that research can lead to real-world consequences for autistic people, and that our field is inextricably linked to the wider context of neurodiversity in society. Accordingly, we advocate for the following values, to ensure we live up to our ethical responsibilities.
Our Core Values:
We believe that all people, regardless of autism, intellectual or language ability, have equal value and should have equal human rights. However, autistic people still do not enjoy human rights to the same extent as everyone else, despite the 2006 adoption of the UN Convention on the Rights of People with Disabilities. This was a focus of Professor Baron-Cohen’s keynote speech to the United Nations in 2017.
Working together with autistic people
In the spirit of ‘nothing about us without us’, we are committed to engaging with autistic people and the wider autism community, which includes family members, carers and professionals. We call this Community Engagement, though it is sometimes referred to in research as Patient and Public Involvement and Engagement (PPIE). We prefer Community Engagement, as autistic people taking part in research are only patients when they are recruited into the study from a clinic. In most of our studies, we recruit people from the general population.
Some autistic people are unable to communicate about complex issues for themselves, even with significant support, so we sometimes need to contact parents, carers or advocates, to help us understand what is important to those people. We are also working to ensure that we include groups who are heard from less often, such as those with different gender identities and those from a range of ethnic backgrounds. We will always engage with autistic people and, depending on the topic of research, we may also engage with clinicians, educators, social care professionals, families and carers of autistic people, policymakers, other researchers, employers, charities and other stakeholders as appropriate.
We believe that our work is better when researchers respect and include experts with lived experience. In all of our research, we strive to include autistic people meaningfully, as early as possible in the research process and throughout it. We have a dedicated team to help us improve how we engage with the autism community and are always open to learning how we might do this better.
For our full Community Engagement Commitment, click here.
Respecting preferred language about autism
When talking to autistic people, we use the language they prefer. When talking about autism in general, we use language that we understand is preferred by most autistic people, although we know that there is never 100% agreement.
Neurodiversity, support, and inclusion
We recognise that autism is one form of neurodiversity. This is the idea that autism is part of the natural variation between different people’s brains, including how brains develop, how they are structured, how they function, and how they process information. Differences in the brain can lead to both strengths and challenges but the principle of neurodiversity is that different types of brains are not better or worse than others, simply different. Seen in this way, many aspects of autism are simply differences and should be respected and accepted. We recognise that autism is a spectrum and that every autistic person is different.
Although autism itself is a difference that should be respected, specific aspects of autism and co-occurring conditions can sometimes involve disorder or disease. Examples would be epilepsy and gastrointestinal pain. These can cause distress for people who experience these conditions.
In addition, yet other aspects of autism involve disability. Examples of disability include a language disability, learning disability, difficulties with social understanding, or difficulties adjusting to unexpected change. Under the Equality Act in the UK and the equivalent in other countries, autistic people have a right to and deserve support for their disabilities. This includes reasonable adjustments or accommodations for their disability. With the right changes in society, we recognise that disability can be minimised, as disability is in part the result of the fit between the individual and their surroundings.
Autistic people also have a right to treatments for any disabilities and disorders, and these should always be optional. Finally, autistic people should have their differences celebrated, recognising that many of these cognitive differences are talents (such as excellent memory for and attention to detail, ability to focus for long periods, a striving for perfectionism, and excellent pattern recognition).
In sum, we believe that society has a duty to promote awareness, understanding, acceptance, care, inclusion, and respect of and for all autistic people.
We aspire to the highest ethical standards. All of our projects are approved by ethics committees, either within the University or the NHS. We recognise that sometimes ethical issues are extremely complex and will require in-depth discussion with the autism community, even before seeking formal ethical approval.
We strive for transparency in every aspect of our research, including stating on our website the aims of each project, the likely impact, the timeframe, and who is funding the research. We strive to be clear about the expected benefits of each research project for autistic people and their families, including whether the benefits will come directly from research or will require follow up by others, and how long it might take to deliver them. There are times when certain details, such as detailed plans for analysing data, need to be kept confidential. For example, the scientific journals where we publish our research may require us to keep results confidential until the point of publication. That said, our guiding principle is to share information whenever possible.
Treatment and interventions where they are wanted
We value research into interventions and treatments for co-occurring conditions and aspects of autism that cause distress and suffering. Examples include communication challenges, epilepsy, gastrointestinal pain, and anxiety. We recognise that there will not always be a consensus about whether research into interventions is welcomed by autistic people and their families, as different autistic people will welcome different interventions and some will disagree with any interventions. We will engage with autistic people and others as appropriate about the desirability of an intervention.
We believe that autistic people have the right to make informed decisions for themselves about whether they want an intervention, with support where necessary. Research into treatments and interventions should include an evaluation of unwanted side effects and potential harms, not just benefits, and there should be transparency in the reporting of these. We will ensure that ARC staff disclose any commercial conflicts of interest in their research.
Where the autism community have raised concerns about a specific intervention, we listen to this and form our own position. As an example, we take seriously the ethical concerns that some autistic people have raised about Applied Behavioural Analysis (ABA). See this article from Spectrum News. We have reviewed this intervention and are persuaded that attempts to shape behaviour towards normalisation (an idea that is itself incompatible with the principle of neurodiversity) through reward or punishment are at best disrespectful of autistic people’s differences, and at worst are unethical as the treatments may cause distress. As a result, we do not endorse ABA.
Prenatal testing for autism
We do not and will not seek to develop a prenatal test for autism. We do not think this would be valuable and we recognise the risk that such a test could lead to the prevention of autistic babies being born, which is against our values. We oppose eugenics, which is the effort to prevent people with certain traits passing on their genes. We do not want a world without autistic people. We recognise that some companies already offer prenatal screening to predict the likelihood of autism. We will not work with companies working in this field, nor share data with them.
We do conduct research studies with pregnant women, so we can better understand how the brain develops in the womb. In autism, there may be small biological differences during this time. Understanding these differences better may also help us understand some of the causes of autism and how autistic people’s health may be affected in later life. An example is our research finding elevated levels of prenatal sex steroid hormones, which may be relevant to understanding why autistic women have a higher rate of polycystic ovary syndrome (PCOS) and why mothers with PCOS have a higher likelihood of having an autistic child. We reiterate that the ARC will never conduct or develop studies for the purpose of prenatal diagnosis.
Cure for autism
We do not seek a cure for autism itself, as autism is a part of who the person is. Instead, we call for excellent support, treatment and interventions for specific symptoms or challenges that cause distress and where this is desired by the autistic person, and we call for reasonable adjustments for autistic people to minimise their disabilities. We only use the word ‘symptoms’ to refer to aspects of autism that cause distress and suffering to the person. We recognise that the word ‘cure’ may be appropriate for certain medical disorders associated with autism, such as epilepsy or gastro-intestinal pain, where the individual is clear that they wish to be free of that symptom. The key principle is to distinguish between the symptom that is the target of treatment, which is separate from autism itself.
Finally, we also recognize that the families of autistic people who have high support needs should be listened to, so that both the autistic person and their family are being offered excellent quality support.
This document makes explicit our values, since it is important the scientific community recognises that how scientists conduct human research, and which questions they choose to investigate, are both intrinsically linked to the values of the scientists. This document also illustrates how autism research has changed over the decades, since many of these values were not evident in autism research in the past. This document will evolve over time, as we discuss our values with the autism community.