Spectrum 10K is currently paused for community consultation. Once the consultation is complete, this website will be updated.

Frequently Asked Questions

About Spectrum 10K

Spectrum 10K is a research study of 10,000 autistic individuals of all ages and abilities, who  are living in the UK, and (if possible) their relatives (who may not be autistic). We would like  to obtain a saliva sample from all participants to extract their DNA. We also want to collect information about social circumstances, such as employment status, education, vulnerability,  and wellbeing. In addition, we want to gather information about physical and mental health,  and information about being autistic, which includes questionnaires about autistic traits and sensory difficulties. With consent, the research team would like to access the medical records of all those involved in the study. Taking part in Spectrum 10K is entirely voluntary. 

Spectrum 10K aims to investigate genetic and social factors that contribute to how autism affects people, and the extent to which autistic people have co-occurring mental and physical  health conditions such as gastrointestinal problems, epilepsy, anxiety and depression. The ultimate aim is to increase our understanding of the factors that contribute to wellbeing in autistic individuals and their families. We know that no two autistic individuals are alike, and Spectrum 10K aims to understand how we can provide tailored support to autistic  individuals. 

The hope is to understand more than we know now about the factors that affect well-being in  autistic individuals, including their physical and mental health. We hope this increased understanding will lead to an improvement in the quality of support needed and better wellbeing for autistic people and their families. 

Spectrum 10K is organised by the University of Cambridge and is jointly sponsored by Cambridgeshire and Peterborough NHS Foundation Trust (CPFT) and the University of Cambridge. 

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 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

At the time of registration we will ask you to complete a 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
We will also ask you to provide a saliva sample from which we will extract your DNA. Following registration you will have the option to complete our optional questionnaires which  will cover a range of topics including: 
  • 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) 
Finally, we will obtain Electronic Health Records from the NHS which will have information about your diagnoses, hospital admissions, medication, medical tests and any scans that you may have had (e.g. MRI, ultrasound etc). 

Epigenetics is the process by which genes are switched on and off. This is done by modifications to the DNA sequence which affects how cells ‘read’ the genes. Molecules or  compounds within a call can regulate the activity of genes and their expression. These  modifications do not change the DNA sequence itself, but rather how they are read. 

Epigenetic changes can influence the production of proteins in certain cells, ensuring that only necessary proteins are produced. For example, proteins that promote bone growth are not  produced in muscle cells.

All data collected will be used only in line with the research aims of the study. Spectrum 10K aims to investigate genetic and social factors that contribute to differences in autism, co-occurring  mental and physical health conditions in autistic individuals such as gastrointestinal problems, epilepsy, anxiety and depression, ultimately to understand the factors that  contribute to wellbeing in autistic individuals and families.  In Spectrum 10K, we may use only your genetic data, or just your questionnaire data, or just information obtained from medical records, 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.
The results from Spectrum 10K will be published in scientific journals to share any important  discoveries for the autism community. The results will be completely anonymous.

As part of Spectrum 10K, we have established an Advisory Panel consisting of autistic individuals, parents of autistic children, researchers, clinicians, and autism charity representatives. We have met with them from the start of the project to gain valuable feedback that has helped shape the goals of the project, the questionnaires used, and the overall study design. We will continue to work with them for the next few years to get input on all important aspects of the study and to incorporate feedback from the community.

As this study is entirely voluntary, we are unable to pay you to participate. However, the knowledge we gain from the information you provide will help us understand autism better.  We know that autism is complex, and the support needs are different for each autistic individual. To really understand this, we need to collect information from many autistic  individuals and their families. We hope that this study will enable us to understand more fully  the social and genetic factors that contribute to the health and well-being of autistic  individuals.  

There will not be any direct benefits to participants from the study due to the time and complexity of research, but we will share anonymised published findings via newsletters and  social media posts and on our website [give links].

Participating in Spectrum 10K

We welcome autistic individuals who have been diagnosed by a qualified professional, and  their relatives, currently living in the UK.

  • Participants with a diagnosis under the umbrella classification of autism are welcome,  including Autistic Disorder; High Functioning Autism; Asperger’s Syndrome; and Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). 
  • Participants of all ages are welcome. Children (autistic or otherwise) aged below the age  of 16 must be registered by their parents or legal guardian.
  • Adults (autistic or otherwise) without capacity to consent for themselves must be registered by a carer who can act as a consultee.

No. Participation in the Spectrum 10K study is completely voluntary. Additionally, taking  part in this study will not affect the care or support you currently receive.

Yes. You can withdraw from the study at any time. You do not need to give a reason. If you  would like to withdraw, please contact us by emailing info@spectrum10k.org with your request. You are welcome to discuss concerns with us at any time, and the various options you have for withdrawal. 

You have three options for withdrawal:

No Further Contact:  

This means that Spectrum 10K would no longer contact you directly but would have  permission to retain and use information and samples you provided previously and to  obtain and use further information from your health records. This level of withdrawal allows researchers to study autism with the goal of improving the health of people with autism and  their family members. 

No Further Access:  

This means that Spectrum10K would no longer contact you or obtain further information from health records in the future, but still has permission to use the information and  samples provided previously. 

No Further Use: 

In addition to no longer contacting you or obtaining further information, any information  and samples collected previously would no longer be available to researchers. Spectrum 10K  would destroy samples (although it may not be possible to trace all distributed sample remnants) and would only hold information for archival audit purposes. Such a withdrawal would prevent information about you contributing to further research, but it would not be possible to remove data from research that had already taken place.

Eligible participants include up to third-degree biological relatives who may or may not be  autistic and who live in the UK. These include, but are not limited to: 

  • Biological parents 
  • Full siblings or half-siblings  
  • Biological grandparents, uncles and aunts 

Once you have registered yourself or your autistic child you will be given the option to send an email invitation to your family members to take part. Your relatives will receive a unique URL which will direct them to register online. We will not collect any personal information about your relatives at this point; their email address will not be stored and will not be visible  to us.


Our study is open to autistic individuals and their relatives currently living in the UK who have been diagnosed by a qualified professional, as well as their relatives.  

We appreciate that not all autistic individuals will be diagnosed by a qualified professional for several reasons. We understand that you may be on the waiting list for an assessment for an autism diagnosis, or may be self-diagnosed as autistic.  

If you are: 

  • living outside the UK, OR 
  • if you do not yet have an autism diagnosis by a qualified professional, OR 
  • if you are a non-autistic individual who is interested in participating in autism research 

you can join the Cambridge Autism Research Database (CARD).

CARD is a research database for individuals who do not have an autism diagnosis who are interested in participating in research. We will keep you informed via email about future research opportunities that you may want to participate in.  

If you are registered at CARD, you can update the status of your autism diagnosis. If you  receive a diagnosis of autism during the timeframe of the Spectrum 10K study, we may invite you to participate.  

No. This study has ethical approval to proceed in England, Wales, Scotland and Northern  Ireland only. 

However, you can join the Cambridge Autism Research Database (CARD) to be kept informed about future research or participate in  ongoing research. You do not need to be living in the UK to join CARD. Once you have  registered at CARD, you can update your information including updating us if you have been  assessed and diagnosed with autism, at which point we may contact you to invite you to  participate in Spectrum 10K or a future research study. 

No, you do not have to, but we encourage it. 

To participate in Spectrum 10K, you only need to complete the initial questionnaire during registration. This includes questions about your mental and physical health, lifestyle, and autistic traits. These questions are also compulsory for non-autistic relatives as they will help us to understand what is relevant to autistic people by comparing information obtained from autistic individuals to their non-autistic relatives.  

We encourage participants to complete as many optional questionnaires as possible as this  will provide us with a lot more data to understand what contributes to physical and mental  health in autistic individuals and their families. 

Optional questionnaires have been carefully selected to ask important questions about  autism. For instance, one optional questionnaire covers the important but under-studied topic of sensory differences in autistic individuals. By completing this questionnaire, we may be able to understand more fully how sensory differences may contribute to anxiety in autistic  individuals.  

We encourage both autistic individuals and their non-autistic relatives to complete the optional questionnaires. This will help us to understand what is unique to autistic people and what is shared between family members. For instance, some autistic individuals are musically talented, but it could be that they were born into a musical family. If we do not collect information on their family relatives, we do not know if musical aptitude is associated with being autistic or not.  

These questionnaires can be completed in your own time. Additionally, we will send you reminder emails about these questionnaires every three months.

We want to understand the effect of COVID-19 in the autism community. This is to facilitate  the continued understanding of wellbeing in the autism community and the effect that COVID-19 may be having on factors such as mood, anxiety, health and finances. To help us learn more, all participants will be provided with the option to complete an additional COVID -19 questionnaire at baseline. This is optional. If you choose to complete the COVID 19 questionnaire, we will ask you to repeat the questionnaire every 3 months for 2 years.  This will allow us to observe the ongoing effect of COVID-19 in the autism community and  its impact over time. 

Data Safety

Protecting the data you give us is our top priority. For instance, all the data we have collected  from you will be separated from your personally identifiable information (such as name,  address, date of birth), and will be identified by a specific code. This process is called pseudonymisation. We will store your identifiable information separately from the rest of  your data. Only the database manager will have access to your personally identifiable  information. Both your personally identifiable information and the rest of your data will be stored on secure servers at the University of Cambridge. All your data will be password  protected.  

Researchers will have access only to your pseudonymised data, which they will use for  research.  

When we receive your medical data, we will remove all personally identifiable information  and pseudonymize it. We will store your data securely as mentioned above.  

Spectrum 10K complies with the following regulations to ensure your data are stored securely and managed properly: 

The General Data Protection Regulation (GDPR) 

The General Data Protection Regulation is a regulation in EU law on data protection and  privacy put into place to protect the data of EU citizens. It is also designed to provide people  greater control over their personal data. 

Important things that you need to know:

  • Your saliva sample will be stored and analysed at a licensed laboratory and biorepository.  Your sample will be labelled with a barcode and no personally identifiable information will  be shared with this laboratory.  
  • Upon registration, we will assign you a unique ID which we will use to identify your sample and survey data. Therefore, we will work with pseudonymised data when carrying out  analyses.  
  • Your personal information will be stored securely in a safe haven at the University of  Cambridge in a manner that is compliant with school policy and GDPR.  
  • Only approved research personnel will have access to your pseudonymised data. 
  • You have the right to access any information we hold about you.

We will only share your anonymised data with external academic researchers that aim to make valuable contributions to autism research. None of your personal information will be  passed to external researchers. This will be done through secure research databases.  

We will carefully review all requests to use Spectrum 10K data; anonymised data will be  shared with research groups that have received ethical approval and whose aims are in line  with our efforts to improve the wellbeing of autistic people.

In some instances, Spectrum 10K may also share anonymised data with commercial collaborators. This is optional, and you can indicate if you would prefer that your data are not shared with commercial collaborators when you provide consent to take part in this study.  

Any commercial collaboration will be in line with the aims of Spectrum 10K. Some examples of such collaborations may include developing a drug for to alleviate a specific type of epilepsy or gut difficulty which may be relevant to some autistic individuals. Another example might  be to develop an algorithm to detect depression in autistic individuals. Such research is typically conducted during commercial collaborations. 

Genetic Data

We understand that some autistic individuals and their family members would like to receive feedback about their DNA. However, we do not currently have the facilities to provide feedback on your genetic data in an ethical manner that minimizes distress with the right support and counselling services. For this reason, we are currently unable to provide feedback  on your genetic data. However, we may consider developing an infrastructure to do so in the future. If this becomes possible, we will contact all participants requesting consent to provide feedback to you about your genetic data.  

Please note, outside of this study, you or your child may be eligible for genetic testing in certain situations. These may include having a developmental delay, a learning disability, and congenital abnormalities. If you think you or your child might be eligible for genetic testing,  please consult your GP to find out if you are eligible for a referral. 

As we are a research study and not a company or a clinical genetics team, we currently do not have the infrastructure to provide you with your genetic data.

We currently plan to study only small parts of your DNA, but may study your entire DNA at a later date. 

We believe autism is an integral part of human neurodiversity and therefore, are ethically opposed to any form of eugenics.  

Our aim is to identify genetic and environmental factors that contribute to autism, wellbeing of autistic individuals and physical and mental-health conditions that are common in autistic individuals.  

No two autistic individuals are the same, and each may have different routes to wellbeing. Some people may have genetic variants that contribute to both autism and epilepsy, others may have genetic variants that contribute to autism and gastrointestinal pain. Some autistic  individuals may have a higher genetic predisposition to anxiety. Others may have experienced a stressful environment that could have contributed to anxiety.  

We want to gain a better understanding of all autistic individuals. This, we believe, can help us develop the right care and support for autistic individuals leading to improved wellbeing for them and their families.  

We have partnered with a group of researchers and autistic individuals to explain why this research is important and to break some of the myths surrounding genetic research in autism.  Watch this video to learn more! [Display video (tbc) or Simon’s NewScientist article]

Medical Data

One of the aims of Spectrum 10K is to identify factors that contribute to co-occurring physical  and mental health conditions in autistic individuals. Your medical records will provide useful information that can be analysed in combination with genetic and survey data. This will give us a comprehensive overview of the relationship between genes, environment, and co-occurring conditions and clinical outcomes, and may help us to identify where current needs are not being met. Based on the information you provide and your consent, we will request your medical records from the NHS. We may request information about your diagnoses, the medicines you have been prescribed and if you have been referred to any specialist doctors. 

Accessing your medical records will be processed electronically through the Secure NHS  Network using your details and/or your NHS number. This will be done using strict data sharing protocols that have been authorised by national bodies who hold and maintain medical records in England, Wales, Scotland and Northern Ireland.

Spectrum 10K Personal Account

If you are unable to log into your account, please email info@spectrum10k.org with the  subject: “Logging in”

You can delete your account by contacting the Spectrum 10K team on  info@spectrum10k.org or by logging into your account at www.spectrum10k.org and clicking the ‘remove me’ button 

You will not be withdrawn from the study by deleting your account. To withdraw from the  study, we will ask you to specify this in your email. If you delete your account and withdraw  from the study, we will keep the information about you that we have already obtained. To  safeguard your rights, we will use the minimum personally identifiable information possible.

Autism Advice

Spectrum 10K is an academic research project. We cannot offer clinical advice.  

If you think you (or a relative) are autistic you should discuss this with your 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. If you are in the UK, details of clinics  nearest you are available from the National Autistic Society (NAS) (free telephone helpline: 0808 800 4104).

There are a number of autism charities in the UK can that offer support and advice on autism  and mental health. Below is a list of some of these charities: 

  • Action for Asperger’s offers support to relatives and friends of someone who has been diagnosed with Asperger’s Syndrome 
  • Ambitious about Autism is a national charity for children and young people with autism 
  • Asperger’s Syndrome UK offers support to those with a child or adult with Asperger’s Syndrome 
  • Autism Alliance is a network of 16 autism charities and supports thousands of adults and children affected by autism across the UK  
  • Autism Independent UK helps to increase awareness of autism and improve the quality of life for autistic people 
  • Child Autism UK is an autism charity based in Ascot, Berkshire which provides  information and support for parents of autistic children 
  • National Autistic Society is the UK’s largest provider of specialist autism services for  autistic people, parents and carers and professionals 

If you or a family member are worried about your/their mental health, you can call the  Samaritans on 116 123 or email jo@samaritans.org.