Last week I was lucky enough to join a trip to the Autism Research Centre at the University of Cambridge.
This was part of a special trip organised by Dr Lewis Owens of Edmission UK who is also a Trustee of the Autism Research Trust. for a group of prospective students looking to apply for psychology and medicine, and also those with a personal connection to autistic people.
My interests in autism are twofold: as a scientist, I am curious about the biology and psychology of the autistic spectrum; and as a tutor, often working with students on this spectrum, I am always seeking to understand their experience and how to support them better.
What is Autism?
Autism is a spectrum of lifelong developmental conditions, typified by several characteristics, present from a young age (although frequently not diagnosed until older). One way to think of autism is through the triad of impairments; difficulties with:
- Social interaction
- Communication and language
Often combined with repetitive behaviours and intense interests, and high sensory sensitivity. The condition can range across the spectrum from genius level savant (High functioning ASC / Asperger’s) to people with very little language, extreme learning difficulties and a high level of need of support. My favourite quote about autism is, “You know what they say: if you’ve met one person with autism – you’ve met one person with autism.” The condition is highly diverse.
What is the ARC?
It is a multidisciplinary centre in Cambridge, founded in 1998, that connects about 30 researchers working in the field of autism from disciplines including: psychology, psychiatry, genetics, proteomics, neuroscience, biochemistry, developmental biology, statistics, public health and science communication.
Who did we meet?
Several researchers were kind enough to offer their time to us, including Professor Simon Baron-Cohen, head of the department – Professor of Developmental Psychopathology. The combination of academic disciplines and experiences was impressive. It became clear that autism, in its own complexity; from possible causes, presentation and social impact demands this multi-layered approach to study.
What did we learn?
We grilled the team of researchers for well over an hour, so a whole range of topics were discussed. I’ll summarise some of them below:
- Language – language when referencing autism is extremely important. Referring to autism as a medicalised psychiatric disease can be damaging and stigmatising. This isn’t just a matter of being politically correct. Using Autistic Spectrum Condition (ASC) instead of disorder can really help the perception of both autistic people and society as a whole. The concept of Neurodiversity (we as a society have many diverse types – many are typical, but difference from this doesn’t imply a disorder) can be very helpful as a framework to include autism and also dyslexia and other specific learning differences.
- Diagnosis difficulties – Autism can be very tricky do diagnose, especially in older children and adults, and also in girls. Often an autistic person will learn to camouflage their difference in an attempt to ‘fit-in’. This can be stressful for them, and also make diagnosis hard.
- Not all autistic people are geniuses – It is important not to focus on autism solely of the Aspergers/high functioning ‘odd genius’ type (or as Hans Asperger himself referred to his patients ‘my little professors’). Whilst a proportion of autistic people may present so, the condition is a full range spectrum and many autistic people have a high level of difficulty, or limited language.
- Neuroscience – increased neuronal activity and connections have been found in a study of autistic people, particularly in the amygdala (a part of the brain connected to emotions and fear), perhaps linking to both autistic sensory overload and also hormone effects.
- Fetal hormones – levels of hormones (particularly testosterone) that a foetus is exposed to in the uterus seem to have an effect on autism developing, but this also probably has a deeper genetic link.
- Genetics – autism has a clear genetic correlation, but is not related to one gene. Many complex genetic factors seem to interplay, including epigenetics (changes to the genome, other than mutations of the A,T,G,C DNA bases). The centre is studying genes across many individuals to find links and genetic markers.
- Importance of including autistic people in research – there is a phrase in use in the autistic community, “Nothing about us, without us.” The ARC recognises how critical it is that autistic people are consulted and collaborated with in the future study of the condition.
- Co-occurring issues : (as opposed to co-morbid which can sound too medical) Often autistic people can struggle with other differences and conditions including: ADHD, dyslexia, dyspraxia, epilepsy, anxiety, depression, learning difficulties and even suicide (more common in autistic people than the general population)
- Neuroplasticity – the brain can continue to make new connections and learn, throughout our life. The ARC has been developing tools to help autistic people recognise and learn about emotions to make social interaction easier.
- Science communication – the ARC work constantly to help with the both public understanding of autism and education, and how to communicate better between specialists within the academic and medical sectors.
What struck me most about my visit to the ARC was the passion of the researchers for the understanding of autism, and also how diverse and complex this study will be. There is a long way to go, but the work they are doing is vital. The perception of autism and autistic people is slowly changing but education and public understanding about the spectrum must continue to improve. Thank you to the Autism Research Centre for a fascinating visit.
National Autistic Society – UK Autistic charity, training and conferences : https://www.autism.org.uk
Autistica, charity which funds research in to autism : https://www.autistica.org.uk
Autism – A New Introduction to Psychological Theory and Current Debate; Sue Fletcher-Watson & Francesca Happé. Routledge, 2019
Mindblindness, The Essential Difference, Zero degrees of Empathy; Prof. Simon Baron-Cohen
Neurotribes: The Legacy of Autism and the Future of Neurodiversity; Steve Silberman. Avery Publishing, 2015
With thanks to
Dr Joe Wicks – Joe is a GCSE, A Level and IB Maths and Science tutor.