Frequently Asked Questions

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). 
• Individuals of all ages, genders, ethnicities and intellectual capacities are encouraged to participate.
• 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 (for example a friend, a relative, a paid or unpaid carer who provides support to the autistic individual) who can act as a consultee. Any person acting in this capacity should not benefit financially from acting 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.

The initial online sign-up should take approximately 30 minutes per participant. However, for some participants it may take longer or shorter than this. Participants will then be sent a DNA saliva kit in the post to complete and return.

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 will also be able to submit your decision to withdraw online via your account. 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 autistic people 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.

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.

To participate, all adult relatives must provide consent and register for the study. Adult relatives without capacity to consent for themselves must be registered by a carer who can act as a consultee. All child relatives must be registered by their parent or legal guardian.

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.  Relatives of autistic participants do not need to have an autism diagnosis to take part.

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.

If you opt-into the optional questionnaires, they 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.