To raise awareness about autism, challenge misconceptions, and promote neurodiversity, members of the Cambridge study team working on AIMS-2-TRIALS collaborated with a group of six autistic people and parents of autistic people (A-Reps) to design a creative project that combines art and science.

More than meets the eye.

The theme ‘More than meets the eye’ was chosen to challenge perceptions of autism through the lenses of art and science. Art has the potential to help us gain a deeper understanding of autistic people’s experiences, feelings, thoughts, and impressions. In a different, but equally important, way science expands our knowledge of autism. Both encourage us to view autism beyond our first impressions and understand the diversity of people’s experiences.

There are many autistic creatives, and the group wanted to showcase this through the project. There can be a stereotype that autistic people are only interested in science and technology, but this isn’t true for all autistic people. Expressing science through art can open up science to a wider audience by enhancing understanding and accessibility. The group designing the project also wanted to give autistic people visibility in a way that allows them to control the narrative about their autism by expressing their autism through art.

The design process.

The study team and A-Reps worked together to design the project and what it would include. The group decided to run a competition to gather artwork from autistic artists that could be displayed as an exhibition on the more than meets the eye website.  The visual look and content of the site was designed collaboratively. Where there were different options within the group, votes were used or ranking of preferences to make decisions.

It was important to the group that the competition was as accessible as possible, so they chose to have categories for people requiring support with their entry to the competition and those not requiring additional support. As the project (AIMS-2-TRIALS) and members of this group are from across Europe, it was key to enable entry to the competition from a range of countries across Europe.

The group nominated judges to review the artwork which included autistic artists as well as people involved in running art galleries and art projects that benefit neurodiverse people. The group then ranked the nominations to come up with the 3 preferred judges. 

Sarah Douglas an autistic research advisor, and member of the project team, reflected “Being involved with the Arts and Science WG has been a real pleasure. It has been great to have an opportunity to work with my other A-Reps to challenge stereotypical tropes that autistic people are only interested in tech. Seeing the art work that was entered into the competition was a real joy and a testament to the creative talent of autistic people.”

Key features of the project.

The ‘more and meets the eye’ website was designed to host the competition, which was launched in early April 2023 and ran for 5 months. It now hosts the competition outcome and gallery.

The site includes a quiz which aims to challenge autism stereotypes, designed and written by the group and a generating word cloud which asks the question ‘what do autistic people want from research?’. It also features discussion videos between A-Reps and researchers that have been illustrated to give a visual representation of the conversation, and videos from AIMS-2-TRIALS researchers describing their work.

Art created for the competition includes a wide range of styles and media, from painting to digital art, and even poetry. Entries were received from 6 countries across Europe. All of the artwork expresses the diverse ways that autistic people experience the world, and each piece of art submitted to the competition shows a unique perspective on autistic life that is always more than meets the eye.

A groundbreaking shift is needed in the field of autism research to bridge a historical divide between researchers and the autistic community. A recent commentary, co-authored by experts from AIMS-2-TRIALS in collaboration with international institutions and Autism Representatives, spotlights the importance of researchers working closely with autistic individuals representing diverse characteristics and support needs.

The commentary, titled ‘Bridge-building between communities: Imagining the future of biomedical autism research’, outlines a series of recommendations designed to foster trust and collaboration between researchers and autistic communities. It outlines how biomedical science needs to align research aims, practices, and culture with the diverse experiences and needs of the autistic community. This requires a re-conceptualisation of autism to embrace neurodiversity and ensure that the voices and perspectives of autistic people are not only heard but are deeply embedded throughout the research process.

Shift in perspective

Historically, autism research has been rooted in the medical model, viewing autism as a medical condition defined by a set of deficits. This stance has been driven by funding models and infrastructure that prioritise research into medical conditions.

However, this position has become controversial given the momentum of the Neurodiversity Movement, through which autism can be seen as part of human variation. Moreover, recent controversies in autism research have raised concerns among the autistic community relating to ethics, privacy, and transparency.  Precise terminology is also important to ensure successful progress in autism research.

Emily Jones, Professor of Translational Neurodevelopment at Birkbeck and a contributing author, notes: “The perceived gap between the perspectives of the autistic community and the research community raises the risk of the research not being useful to the community it aims to help, and the halting of scientific progress. We are at a critical juncture, which led to the development of this report.”

There is currently a shortage of rigorously evidenced support strategies for autistic people, so there needs to be effective tools to support autistic people and at the same time avoid stigmatising them. The authors highlight that research will also benefit from a more individualistic understanding of the autistic experience, which will help pave the way towards precision medicine and better encompassing the diversity of autism.

Collaborative journey

Sarah Douglas, an autistic research advisor, reflected: “Being a co-author and equal creative partner in this Bridge-Building paper-writing team has been a great experience of genuinely collaborative co-production. It has been a space in which I have felt heard and was able to hear others as we worked together to explore and suggest a better future for autism research that genuinely makes life better for autistic people and their families.”

Vision for a better future

The authors outline several recommendations to foster a neurodiversity-affirmative research culture, including:

• establishing participatory research practices,
• involving the autistic community in research design,
• considering the impact of research on group-harm and stigma,
• engaging closely with autistic people throughout the research process, from the development of research designs to ongoing consultations, including publication and dissemination.

Achieving this authentic participatory research requires changes at both individual and operational levels, with a focus on making engagement the norm and rewarding, with an ultimate benefit on the research itself. The authors call for robust support, a reconsideration of funding narratives, resources and infrastructure.  For example, funders need to support smaller preliminary scope-setting and community engagement initiatives, as well as providing dedicated funding to facilitation systems and discussion forums. Researchers also need effective training to engage effectively with the autistic community.

Neurodiversity-affirmative research

The insights provided by the authors clearly highlight the need for rapid change in field of autism research. The neurodiversity-affirmative approach promises to ensure that research aligns with the values and needs of the community it serves. The researchers emphasise that embracing a culture of inclusivity, partnership, and respect for the voices of autistic people, can unlock the full potential of biomedical science to enhance the lives of autistic people and their families.

Further information

Authors of the report include experts from Birkbeck, King’s College London, University of Cambridge, Brighton and Sussex Medical School, University of Manchester, South London and Maudsley NHS Foundation Trust, Université Paris Cité, Trinity College Dublin, University of Toronto and the Community Health Centre Domzale, Slovenia, alongside members of the autism community.

See the Birkbeck press release

Reference to the original article:

Heraty, S., Lautarescu, A., Belton, D. et al. (2023). Bridge-building between communities: Imagining the future of biomedical autism research. Cell, Volume 186, Issue 18. Pages 3747-3752.

A recent report published by the Innovative Medicines Initiative (IMI), the world’s largest public-private partnership in the life sciences, showed that AIMS-2-TRIALS have published the most papers out of all Phase 2 IMI-funded projects.

Since the IMI was launched, the organisation has published annual publication reports for IMI projects because these scientific papers are an important way to share results with the wider scientific and health communities.

This latest report (which covers publications until 2022), shows that AIMS-2-TRIALS have produced 292 papers over the course of the project so far, and these had a citation impact of 2.92 (adjusted for the academic field), which is more than 2.5 times higher than the world average.

EU-AIMS, the predecessor project to AIMS-2-TRIALS, has produced the largest number of papers with co-authors from more than one country. 

The IMI has had two phases of funding – Phase 1 started in 2008, and Phase 2 began after June 2020.

The previous report (which covered publications until 2021) showed that AIMS-2-TRIALS was 6th in the Top 10 IMI projects with the most published research papers. During that reporting period, AIMS-2-TRIALS researchers had published 210 papers – which is double the previous year.

 AIMS-2-TRIALS is one of only two IMI Phase 2 projects in the Top 10, out of 126 Phase 2 projects.

EU-AIMS came in 2nd place.

Full details of the IMI’s latest publication report can be found on the IMI website.

Extensive research shows that far more male individuals are diagnosed as autistic, compared to females. This autism ‘sex-ratio bias’ means that around 4 more males are identified as autistic than females. So why is there a higher diagnosis rate for autism in males? Some researchers have shown that this is partially due to autism being easier to recognise in males. However, even taking this into account, studies show that the ratio is still around 3:1, which suggests there may be an underlying biological difference between autistic male and female brains.

Despite being a growing area of study, scientists still do not fully understand the differences between the brains of autistic males and females, versus non-autistic males and females. Previous research had focused on cognitive differences, i.e. how males versus females think and reason. But a recent large-scale analysis, conducted by AIMS-2-TRIALS researchers, has aimed to increase our understanding of the neurobiology (brain biology) of autistic males and females, compared to non-autistic males and females.

Techniques used in the study

The researchers used a relatively new technique called ‘deep learning’ (a type of artificial intelligence or AI) to explore the complex relationships between the structure of the brain and biological sex. Deep learning uses algorithms that mimic the way the human brain works, connecting mathematical functions into an artificial ‘neural network’. Artificial neural networks enable scientists to explore elaborate data patterns and find complex relationships between variables and categorise data.

The first step was to teach the deep learning model to differentiate between male and female brains in non-autistic people. The researchers did this using structural brain images from a large database (UK Biobank) of over 10,000 non-autistic people. These images were taken using structural MRI (magnetic resonance imagery) scans. The model then learnt how to classify these brain images into ‘male’ or ‘female’ categories.

Once the model was trained, the researchers tested new data samples from people that took part in the ABIDE (Autism Brain Imaging Data Exchange) and LEAP (the Longitudinal European Autism Project) studies. These data sets include both autistic and non-autistic males and females. The trained model was used to classify these structural brain images as being from male or female brains. The team then checked the accuracy of these classifications in all four groups: autistic males; non-autistic males; autistic females; non-autistic females.

What the scientists found

The study showed that the deep learning model was less likely to accurately identify autistic female brain images as ‘female’. In contrast, the researchers found that male autistic brains were more likely to be correctly categorised as ‘male’.

Essentially, autistic females showed structural brain features that more closely resembled the brains of non-autistic males, rather than non-autistic females.

However, these differences in brain classification were not found in people who had an ADHD diagnosis, showing that these results are specific to autism.

The next set of findings involved assigning ‘sex classifications’ at each location in the brain to see whether any specific brain regions were driving these brain classification differences.

They found that the trained model was more likely to classify certain brain regions as ‘non-autistic male’ than other brain regions. For example, the brain maps for autistic females showed that brain regions linked to auditory (hearing) and face processing were more similar to those equivalent brain regions in non-autistic males, rather than non-autistic females. Whilst for autistic males, the regions of the brain linked to motor (movement) and reward processing were more likely to be classified as ‘non-autistic male’ brain regions. These results may highlight an interesting area of future study.

The images labelled D and E (See Right) show different regions of the brain that have a higher probability of being predicted as male by the deep learning model. The word cloud shows which cognitive words are most associated with these brain regions.

What do the findings mean?

From these results, it is clear there is still much to learn about autistic females, and there needs to be greater awareness about the under-recognition of autistic females.

It is important to recognise that these findings do not apply to every autistic person. In fact the results show a great degree of overlap in the brain structures of autistic and non-autistic people. The differences that can be seen are likely driven by differences in a small subgroup of autistic people. At this early stage, more research is needed, for instance to see whether these brain patterns emerge under the age of 6, and how they change for one individual over time.

Looking to the future, if scientists gain a better understanding of the underlying biology of autism in females, then there is a greater chance that clinicians will be able to eventually provide more tailored support for those who want it. The results also indicate it may be helpful to revise the tools used to diagnose autistic females.

Reference: Floris, D.L., Peng, H., Warrier, V., et al. (2023) The Link Between Autism and Sex-Related Neuroanatomy, and Associated Cognition and Gene Expression American Journal of Psychiatry Published: 23 November 2022