Frequently Asked Questions
Below are some questions that we have been asked about the project.
Click on each question to view our response, and if you can not find what you’re looking for, scroll to the bottom to submit your own question.
What does AIMS-2-TRIALS stand for?
AIMS stands for Autism Innovative Medicine Studies and 2-TRIALS means ‘to trials’ – because there will be trials (or tests) of new medicines.
However, it’s important to remember that medication is only one part of this large project, which also includes a number of studies aiming to understand autism better, work on autism-related policy across Europe, and raising awareness, understanding and acceptance of autism.
Who is this website for?
This website is for autistic people, scientists, clinicians and the wider public. It provides information about AIMS-2-TRIALS, what it is and what it aims to achieve. Over time, this website will be updated with news on the project’s progress. In the future, the website will have videos about autism and about the findings of our autism research. It will also have materials that scientists and medical professionals can use to learn about autism. Some of these videos will be created together with the autism community.
What language is used on this website to refer to autism?
We know that different people prefer to use different words when they talk about autism. When we talk to people one by one, we always try to use the words that they prefer. However, when we talk to everybody at once, for example on this website, it’s impossible to use words that everybody will be happy with. The best we can do on a website is to listen to what most people say.
Research has found that when a group of around 500 autistic people in the UK were asked to pick just one way of talking about autism, there wasn’t one clear choice. About a fifth chose ‘autistic’ and just slightly fewer chose ‘on the autism spectrum’. Based on that research, we have chosen to use the term ‘autistic person’ on this website, although we know that this is a term that not everybody likes as much. We recognise that this isn’t perfect and that it may change over time. We will keep listening.
Read about our choice of language.
What are the main goals of AIMS-2-TRIALS?
The main goals of AIMS-2-TRIALS are to help us understand autism and to develop effective treatments for aspects of autism for those who want them. We want to do this by bringing together the autism community, researchers, charities and companies across Europe.
We are not trying to cure autism. Instead, we are looking for ways to help with some of the difficulties that autistic people may face, such as difficulties with language and communication, poor mental or physical health, and reduced lifespan.
Are you trying to cure autism?
No. We believe that autistic people are part of the diversity of any society and should enjoy the same human rights as any person. In addition, autism is unlike pure medical diseases such as cancer or heart disease, which do need cures. Furthermore, autism can bring strengths (for example, in memory or attention to detail) and sometimes even talents. Some people feel that autism is a key part of who they are, of their identity, and not something that should be cured. We hope AIMS-2-TRIALS will help society to embrace these differences by understanding autistic people better, while identifying ways to help with some of the difficulties and challenges that autistic people may face, such as difficulties with language and communication, poor mental or physical health, and reduced lifespan.
How will the research benefit autistic people and their families?
This research will help autistic people and their families by improving awareness, understanding and acceptance of autism, by communicating with policy-makers, and by developing more choices for autistic people who want help and support. All autistic people are different, so they won’t all need the same therapies and support.
To find the best ways to help, we need to understand more about how people are different, how they change as they get older, and which individuals might develop specific difficulties such as mental health problems. This will allow personalised approaches to be developed. Some people call this ‘precision medicine’, but this phrase doesn’t just mean medication. It also means therapies and ways of working with autistic people. Each of our findings should be helpful for some autistic people, but probably can’t be helpful for all of them. What we are working towards is more choice for those who want help.
The project will also work to improve awareness, acceptance and understanding of autism by producing news stories and holding events. It will also create guidelines for governments on how to better support the needs of autistic people.
How will the views of autistic people be involved in this research?
We will be asking autistic people for their involvement to ensure that the views of autistic people are included in the project. We will do this in different ways, including face to face and remotely (via the internet or video calling). To make this work, we are forming a group called the Autism Representative Group (A-Reps).
For more information, see our response to the question What is the Autism Representatives group (A-Reps) and how will it work?
How can I get involved?
Autistic people and their families can get involved in AIMS-2-TRIALS by becoming part of the Autism Representatives Group, called A-Reps. The idea is for A-Reps to be an independent group working alongside AIMS-2-TRIALS researchers. Being independent means that they can say what they really think.
For more information, see ‘What is the Autism Representatives group (A-Reps) and how will it work?
What is the Autism Representatives group (A-Reps) and how will it work?
The Autism Representatives will be an independent group that works alongside AIMS-2-TRIALS researchers. Find out more about what A-Reps do, who can become an A-Rep, and the steering committee that will oversee their work here.
What is precision medicine?
Precision medicine is an idea used in many conditions, not just autism. It means offering an individual the help that is right for them. This is important in autism because all autistic people have different experiences, symptoms and co-occuring conditions. To develop a ‘precision medicine’ approach, researchers use biomarkers (see ‘what is a biomarker’).
What is a biomarker?
Biomarkers – short for biological markers – are things we can measure that go along with a condition, and which can help us learn more about that condition.
They can help to:
- Enable earlier and more accurate diagnosis
- Predict the long-term needs and abilities of each autistic individual
- Predict how symptoms may change over time
- Decide which treatments may be helpful
There are many possible types of biomarkers. This can include genetic or blood tests. It can also include what the brain looks like on a medical scan, or performance on tasks to explore how an individual thinks and behaves.
Why are biomarkers important for autism research?
We hope that finding high quality biomarkers will help us to predict how an individual’s symptoms of autism may change over time, which autistic people will develop other conditions later in development (such as epilepsy, anxiety or depression), and which treatment or support may be best for each person.
Do you aim to develop a genetic test to identify which babies will develop autism?
No. AIMS-2-TRIALS is not developing a genetic test and is ethically opposed to eugenics. It is also unlikely that a genetic test will ever be specific or accurate enough to predict whether a person will develop autism. This is because, for most autistic people, many thousands of different variations within their genes could contribute to causing their autism. Further complexity comes from the fact that these thousands of genes are also affected by important factors in a person’s environment. The exception to this is that there are small number of rare genetic variants or mutations that are linked to autism in about 5% of autistic people.
Is the project just developing medicines for autism?
No. The project does plan to test medicines, but also has many other aspects. It aims to:
- Investigate the biology of autism and the needs of autistic people at different ages and stages of development
- Consider national policies on autism across Europe and begin discussions with policy makers
- Explore how to measure whether a treatment (medical or non-medical) makes a meaningful change to an individual’s daily life
- Understand the biology of autism and this knowledge may inform the future development of treatments tailored to an individual’s biological profile
We recognise that while some autistic people and their families do want medicines to treat aspects of their autism or co-occurring conditions, others may prefer non-medical interventions or choose not to receive any support. There are many ways in which our work could inform and support the development of non-medical treatment options.
What type of medicines is the project working on?
Some autistic people want medicines or non-medical treatments for specific problems, such as anxiety or epilepsy, or to help with language and communication issues. Others may not want or need treatment at all.
Giving autistic people choice is a big part of why our research is important. The project will test some medicines and you can read more here. The first medicine to be tested aims to help with social withdrawal. No aspect of our research aims to cure autism.
How do you decide which tests and medicines are good ones?
We will assess the measures of behaviour and biology that are used in research to assess autism and in tests of new medicines. A measure could be, for example, a numerical score given to answers in a questionnaire. We will explore whether a given measure provides reliable results when used in many different people. Read more.
We will also test two medicines. The first medicine is called arbaclofen and was chosen because it showed potential to help with social difficulties in previous studies. Read more here. Before we choose the second medicine to test, we will explore two different options.
Many of our research studies will investigate development, biology and behaviour in autistic people. This work to better understand autism may show which treatments could, in the future, work best in people with particular characteristics. Read more.
Who is leading this research? Who else is involved?
The research is led by:
- Professor Declan Murphy at Kings College London in the United Kingdom, the project’s academic lead
- Dr Will Spooren at Roche, the project’s industry lead
In total we have 48 partners in 14 countries, in academic institutions, pharmaceutical companies and charities. For the full list, please visit the Team page.
Who is funding AIMS-2-TRIALS?
The funding for AIMS-2-TRIALS has been awarded by the Innovative Medicines Initiative (IMI) and funding or in-kind contributions have been provided by pharmaceutical companies (EFPIA partners) and autism charities (Simons Foundation, Autism Speaks, and Autistica). Find out more.
How do I know that each study has high ethical standards?
Because our research involves real people, there are Good Clinical practice (GCP) guidelines we have to follow. These are recognised internationally and have ethical and scientific quality requirements that must be followed when designing, conducting, recording and reporting clinical trials and any other research. All individual projects will need to be approved by independent local ethics committees in each of the countries involved before any research can take place. For an example of what Good Clinical Practice includes in the UK, see the NHS Health Research Authority website. We will also consult our Ethics Advisory Board and the A-Reps (see above) who will review the project documents regularly and ensure we are incorporating feedback from autistic self-advocates and parents.
As well as these ethical standards being built into the project from the beginning, the funders (IMI) also have their own requirements to ensure that ethics are well managed across the whole of the project. These IMI requirements were included during the process of setting up and funding AIMS-2-TRIALS. Find out more.
What was EU-AIMS and what did it achieve?
The European Autism Innovative Medicine Studies (EU-AIMS) was an international research project that advanced our understanding of autism. It ran from 2012 to early 2018. The project made discoveries about how the brain develops from childhood into adulthood and about the unique needs of autistic individuals. It also found out more about the biology that underpins particular autistic behaviours. One key part of the EU-AIMS project was to attempt to identify biological signs of autism (also called biomarkers) to enable an earlier and more accurate diagnosis. Another key part of the project was to develop a network of clinicians and autistic people across Europe who might wish to take part in future research studies.
For more information visit the EU-AIMS website.
To expand on this initial research, a second and separate project – AIMS-2-TRIALS – began in June 2018 to learn more about autism and how to best support autistic people and their families.
How is AIMS-2-TRIALS different from EU-AIMS?
AIMS-2-TRIALS has some of the same partners as EU-AIMS, as well as some overlapping goals. However, AIMS-2-TRIALS is a new project in its own right, with its own funding, more partners (including autism charities, clinicians and researchers) and partners from outside of Europe. AIMS-2-TRIALS also has two clinical trials to explore the potential of medication to help with difficulties that some autistic people face, such as communication difficulties, epilepsy and anxiety. The project also includes strategies to involve the autism community via the Autism Representatives Group (A-Reps) and to have discussions with policy makers in government across Europe
While we can’t cover all aspects of AIMS-2-TRIALS in this answer, you can find much more information by exploring this website. If you can’t find the answer you’re looking for, please let us know via the form at the bottom of this page. We will review submissions regularly and update the FAQs accordingly.