Frequently Asked Questions
What is Spectrum 10K?
Spectrum 10K is a research study of 10,000 autistic individuals and their immediate families. It aims to investigate biological and environmental factors that contribute to autism and common physical and mental health conditions for autistic people, such as gastrointestinal problems, epilepsy, anxiety and depression. For this, we would like to obtain a saliva sample from all participants to extract their DNA and study their genetics. We also want to collect information about social circumstances, such as employment status, education, vulnerability, autistic traits, and wellbeing and physical and mental health conditions through questionnaires and links to electronic health records. Taking part in Spectrum 10K is entirely voluntary.
The Spectrum 10K team values and respects autistic differences and are working to promote inclusion, acceptance, and dignity for autistic people throughout society. Therefore, the study will not look for a cure for autism and does not aim to eradicate autism. The team stands against eugenics.
We know that no two autistic individuals are alike, and Spectrum 10K aims to understand how we can provide tailored support to autistic individuals.
To do this we aim is to better understand how genetic and environmental factors affect the wellbeing of autistic individuals, including their physical and mental health. We hope this increased understanding will lead to an improvement in the quality of support and care for autistic people and their families.
No. Spectrum 10K will not look for a cure for autism. The Autism Research Centre (The ARC) is ethically opposed to any form of eugenics.
The goal of Spectrum 10K is to identify both genetic and environmental factors that contribute to autism, co-occurring conditions, and wellbeing of autistic individuals. A better understanding of these factors can help the development of the right care and support for autistic individuals and their families leading to improved wellbeing for autistic individuals and their families.
The study design, protocol and procedures have been thoroughly reviewed and approved by two research ethics committees in the UK, namely London Queens Square Research Ethics Committee (REC) and Scotland A-REC. Ethics committees work to protect the rights and wellbeing of participants and promote ethical research throughout the UK and within the NHS. Spectrum 10K has consulted with an Advisory Panel that includes autistic people, parents of autistic children and those who work with autistic people to ensure that the study is aligned with the needs and views of autistic people and their family members.
Spectrum 10K does not intend to find a cure for autism and does not want to eradicate autistic genes. The aim is to use genetic information in conjunction with information about people’s lifestyle to learn more about the condition and identify where needs are not being met.
Spectrum 10K is led by the University of Cambridge and is jointly sponsored by Cambridgeshire and Peterborough NHS Foundation Trust (CPFT).
It is led by a team of researchers in various departments at the University of Cambridge, including the Autism Research Centre (ARC), the Wellcome Sanger Institute and the University of California Los Angeles (UCLA). Click here to meet the team!
Spectrum 10K is jointly sponsored by the University of Cambridge and Cambridgeshire and Peterborough NHS Foundation Trust (CPFT). CPFT, acting as the sponsor takes primary responsibility that the design of Spectrum 10K meets appropriate standards and that arrangements are in place to ensure appropriate conduct and reporting.
Spectrum 10K is also working with more than 19 NHS Trusts across the UK to identify potential participants and to provide assistance with registration.
Spectrum 10K is funded by The Wellcome Trust. This organisation provides funding to scientists to support them with research that can increase understanding of physical and mental health and ways to improve it. For more information visit: www.wellcome.ac.uk/about-us
1. At the time of registration we will ask you to complete an online questionnaire which asks for information about:
- Social factors such as education, occupation, income, and social relationships
- Lifestyle factors such as smoking, drinking, exercise, dietary habits, and medication use
- Physical health conditions, sleep patterns, and gut health
- Mental health conditions
- Autistic traits
- Autistic traits, sensory difficulties, and repetitive behaviour
- Further details on mental health conditions such as depression and anxiety including medications used and support received
- Vulnerability experiences, quality of life, and resilience
- Camouflaging, masking, and compensating (i.e. using various strategies to perform behaviour that is assumed to be “normal” and to hide autistic traits)
- Intellectual ability, and tests assessing how you think and feel
- Early developmental history (for children only)
Autism runs in families. Thousands of genetic changes contribute to the likelihood of autism and to the physical and mental wellbeing of autistic individuals – such as the risk of developing gut issues, apraxia or depression. However, autism is not entirely genetic. Identical twins, who share all of their genes, can differ with respect to autism. For example, one may be autistic, the other may not be. Furthermore, co-occurring conditions and wellbeing in autistic individuals are influenced by both genetic and environmental factors. As an example, some instances of gut difficulties in autistic individuals may be due to changes in gut-brain nerves, whilst some other instances may be due to the gut microbiome or diet.
We need to study both genetics and the environment together to understand why autistic individuals have such diverse outcomes, and to provide the right support and care to those autistic individuals who need it. We request a saliva sample to extract your DNA and study your genetics. We ask you to complete questionnaires to get information about your environment, autism, health and wellbeing.
In Spectrum 10K, we may conduct research on your genetic data only, or your questionnaire data only, or information obtained from medical records only, or a combination of all of these.
Examples of research that can be conducted using your genetic data are:
- Identifying genetic variants that are more or less frequently seen in autistic individuals
- Understanding if specific sets of genes contribute to epilepsy in autistic individuals and understanding if different genes associated with epilepsy contribute to different types of epilepsy
- Identifying genes that may contribute to severe gut issues in autistic individuals, and developing therapies for these gut issues which are informed by genetics
- Investigating how early life vulnerability interacts with genetics to contribute to depression, anxiety, and wellbeing in autistic individuals
Examples of some research that can be conducted using your questionnaire data or medical records are:
- Identifying which physical and mental conditions are more common in autistic individuals compared to their non-autistic family members
- Understanding what factors contribute to self-reported quality of life in autistic individuals
- Investigating if camouflaging and masking contribute to depression and anxiety in autistic individuals
This will take time as results will not be immediately available. This depends on how quickly people sign up to Spectrum 10K. Ideally, data analysis will start in 2021 once enough data have been collected to carry out robust testing. Results will be published in peer-reviewed scientific journals and conferences to share discoveries with the scientific community. Importantly, the findings will be shared in conferences attended by the autism community and with charities to inform policy. Spectrum 10K participants will receive bi-yearly newsletters to inform them of study results and other important news about the study. All results will be totally anonymous without any means of identifying the individuals involved. Participants will not receive any individual results about their own data.
As part of Spectrum 10K, we have established an Advisory Panel consisting of autistic individuals, parents/carers of autistic children, clinicians, and autism charity representatives. We have consulted the panel on various aspects of the study to incorporate feedback from different perspectives that have helped shape the study. We have also consulted other autistic individuals, parents, clinicians and other researchers outside of the Advisory Panel. The Spectrum 10K team will continue to consult the autism community both through the Advisory Panel and outside of it, to work together throughout the length of the project.
There is no financial compensation for taking part. Participants will sign up to the study on a voluntary basis. There may not be any immediate direct benefits to participants as it likely will take a long time to translate our research findings into real-world practice due to the complexity of this research. However, the potential knowledge gained will help promote greater understanding into the causes of the wide range of outcomes in autistic people including their strengths and talents. The study also aims to identify who might benefit from different kinds of interventions if they are seeking them and to support their disabilities and improve their wellbeing.
Registered participants will also receive bi-yearly newsletters to inform them of study results and other important news about autism research, and will be invited to seminars and conferences that may be of interest.
If you have cold/flu symptoms or have tested positive for COVID-19, you can sign-up to the study safely from home by reading our information sheet, consenting to take part, and completing the online questionnaire. However, please delay returning your saliva sample until your isolation period is finished. Your isolation period includes the day your symptoms started (or the day your test was taken if you do not have symptoms), and the next 10 full days. For more information please refer to the government’s guidelines.
Recruitment for Spectrum 10K will continue to invite participants and collect data until January 2024.
Spectrum 10K uses the term ‘wellbeing’ to include physical and mental-health conditions, such as gastrointestinal problems, epilepsy, anxiety and depression, as well as lifestyle factors that influence the health and daily quality of life for autistic individuals. Spectrum 10K has consulted with an advisory panel, consisting of autistic adults and parents of autistic children, about their views on wellbeing and quality of life. The information collected in this study covers various aspects of mental and physical health but it is, by no means, an exhaustive definition of wellbeing.
It is unclear how many environmental factors give rise to the diversity within the spectrum . Some evidence involves factors before and after birth such as parental age and low birth weight. Researchers also do not yet understand how environmental factors contribute to physical and mental health outcomes in autism.
Environmental factors alone are unlikely to cause autism. Together, genetic and environmental factors contribute to differences in the development of and presentation of autism and the wellbeing of autistic individuals. This is why research like Spectrum 10K is important.
Spectrum 10K is an academic research study and cannot offer clinical advice or diagnostic services. If relatives think they are autistic they should discuss this with their General Practitioner (GP) or family physician in the first instance, and if appropriate, ask for a referral to a local child development centre (CDC), community paediatric service, child and adolescent service, or adult diagnostic service specialising in autism. For relatives living in the UK, details of autism services are available from the National Autistic Society (NAS) (free telephone helpline: 0808 800 4104).