Most early autism research focused on children, mainly boys. This means we still do not have enough research about autistic girls, women, and adults or those from minority groups. For information see Why autism can be difficult to recognise in some people .
Some autistic people worry that information from certain studies could be used to try to “cure” autism, reduce the number of autistic people being born, or change autistic behaviour to fit non-autistic expectations.
Most autistic people do not agree that autism should be cured or removed. They also do not feel they should have to change who they are to make others comfortable. Some feel that research has been done to them, not for them, which is why many autistic people are cautious about taking part in studies.
Why autism research is still needed ?
Thankfully, autism research is changing.
More modern studies aim to support autistic people and improve quality of life. Many studies now focus on:
- mental and physical health
- education
- work and employment
- improving daily living and wellbeing
There are also more researchers who work with autistic people when designing studies. They ask autistic people what questions are important to them. Some studies are even led by autistic researchers.
This type of research is more respectful and more likely to help create positive change.
Possible benefits of autism research
- It can improve support in schools, workplaces, healthcare, and daily life.
- It can help people understand sensory needs, communication styles, and mental health.
- Research done with autistic people can help create more inclusive environments.
- It can challenge stereotypes and reduce stigma.
Possible risks of autism research
- Some studies might use information in harmful ways, such as trying to prevent autistic people from being born.
- Some organisations still believe autism should be cured and may fund studies for that purpose.
- Research can focus too much on changing autistic behaviour instead of supporting autistic needs.
- Personal information might be shared or sold if this is not made clear as part of the sign-up process – see how to spot a scam
- Autistic people may feel unsure or pressured due to communication differences, if things are not explained simply and clearly.
What to check before joining a research study
Before you agree to take part in any research, make sure you fully understand what is involved. These are the key questions to ask:
- What exactly will happen?
What will you be asked to do? - What information will be collected?
Will it include written answers, recordings, health data, or anything else? - How will your information be used?
Is the research meant to help improve the lives of autistic people? - Will your information be used again?
Will it only be used for this study, or could it be used in future research or sold? - Can you choose who your data is shared with?
You should always have a choice about this. - Who is funding the study?
Some organisations still believe in curing autism, and this can influence what the study is trying to do.
Any trustworthy research organisation should explain all this clearly.
If they cannot, or refuse to, it may be safer not to take part.
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Leicestershire Partnership Trust (LPT) – Autism research register
The team running the Autism Research Register want to share research opportunities with people who are interested in taking part in autism‑related studies. To help with this, they are building a research register.
The register will include the names and contact details of people who would like to be involved in autism research.
You can read about the studies that are currently open for recruitment by visiting their website.
https://www.leicspart.nhs.uk/involving-you/research-and-development/autism-research-register/
What does LPT research aim to do?
Leicestershire Partnership Trust research aims to help us learn more about autism.
This may lead to better care, better support, and a clearer understanding of autistic people’s experiences in health care.
The team would like to invite adults aged 18 or over who have a formal diagnosis of autism to join the register.
If you want to join the Autism Research Register, you should complete the registration form on their website.
After you send your registration form, you will get a confirmation email from:
lpt.researchdelivery@nhs.net
Then, approved members of the Research and Development (R&D) Team will contact you using your preferred method (for example, email or phone).
Before you decide to join you may want to talk to your family or friends about your decision and about the studies that LPT is currently running.
If you have questions, you can: –
Read the Frequently Asked Questions on their website Autism research register – Leicestershire Partnership NHS Trust or contact the Research and Development Team directly at lpt.researchdelivery@nhs.net
They will be happy to answer any questions you may have.
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National autism research opportunities
If you are interested in being involved in national autism research, you may wish to look at the opportunities available through several well known organisations.
Below are some places where you can find current research projects.
National Autistic Society – Research
The National Autistic Society shares information about autism research taking place across the UK.
They often post opportunities for autistic people, families, and professionals who want to take part in studies.
You can visit their website to see what research projects are open.
National Autism Society Research
Autistica – Research Projects
Autistica is a UK charity focused on autism research.
They run and support many studies related to mental health, physical health, education, employment, and quality of life for autistic people.
Their website includes details of:
- current research projects
- opportunities to take part
- ways to join their research community
Research projects – Autism | Autistica
EDAC – The Eating Disorders and Autism Collaborative
EDAC is a UK-wide network of researchers who focus on the link between autism and eating disorders.
Their aims are to:
- improve understanding of eating disorders in autistic people
- develop better and more appropriate treatments
- work closely with autistic people who have lived experience
EDAC has also created best practice guidelines for doing research in this area, to make sure it is respectful and safe for autistic people.
You can visit their website to:
- learn more about their ongoing projects
- read their guidelines
- check for opportunities to get involved
The Eating Disorders and Autism Collaborative • EDAC
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Below are some places where you can find past research projects.
- Adept-2 – the autism depression trial -2.
A randomised controlled trial (ADEPT-2). Data being analysed From April 2025
ADEPT-2 – The Autism Depression Trial -2. A randomised controlled trial (ADEPT-2).
- Sertraline for anxiety in adults with a diagnosis of Autism
A randomised controlled trial (STRATA) – Awaiting publication
