This privacy policy sets out how Autistica uses and protects all personal information you provide us including data obtained from our website [].

We are committed to protecting your privacy and we want you to be assured that your data is managed properly by our charity. Any personal information you provide to us will be used lawfully and in accordance with this privacy policy. 

We respect all personal data you choose to share with us, including that which we may obtain from other sources, and we will ensure it is stored safely and processed fairly & legally in accordance with the requirements of the Data Protection Act (1998) and the General Data Protection Regulation (from May 2018). [Referred to as DPA/GDPR in this policy].  

We aim to be clear when we collect your data, (and afterwards throughout your involvement with our charity), about how we intend to use it, and will not to do anything with your personal data that you wouldn’t reasonably expect as a supporter of our charity and cause. 

Developing a good relationship and better understanding of our supporters through correct and legal use of your personal data allows us make better decisions, fundraise more efficiently, and ultimately helps us to reach our short and long-term charitable goals.  We aim to track your involvement with our charity and build strong mutually respectful relationships that last.

We have already made, and will continue to make, improvements to this policy so that it reflects a best-practice model, in order to make it fully understandable to all our supporters.

Who are Autistica?

Autistica is a UK charity, (charity reg. no. 1107350), which funds medical research to understand autism, improve diagnosis and develop new interventions. We are the UK's leading autism medical research charity and are committed to answering the questions that matter most to children and adults on the autism spectrum and their families

We are a Data Controller and as such are registered with the Information Commissioner’s Office (the ICO)  - Our ICO registration number is Z8884467.

Our Registered address is at:

St Saviours House 39-41 Union Street London SE1 1SD

Tel: +44 (0)203 857 4340

Fundraising Enquiries: Sarah Bissell, Director of Fundraising T: 0203 857 4341

What data do we collect from supporters?

If you support or contact us in any way, by making an enquiry, making a donation, purchasing items, volunteering your time or expertise, registering to fundraise, signing up for (or attending) an event, then we may collect the following types of information:

  • Name, title/s and full postal address
  • Bank, credit card and payment details [if a donor or purchaser of a service or goods]
  • Contact details such as email addresses, social media links and telephone numbers
  • Your date of birth
  • Information relating to events you may organise such as the event date, the donation collection method, records of the money raised
  • Information relating to your health (for example if you are taking part in a high risk event)
  • How you heard of us
  • What kind of connection you have with our charity
  • Why you have decided to donate to us. [Note: We will never make this question mandatory, and fully understand if you are not comfortable telling us].
  • Your motivations
  • Your feedback from our services or dealings with us
  • Contact notes relating to your involvement with the charity or are considering having with our cause

How much of this information we collect depends on the type of relationship you have and the information we build in the course of your relationship with us. However the information we collect will not be excessive for the purpose it is used.

We do not usually collect sensitive personal information about our supporters unless there is a clear and valid reason for doing so.

For what purposes is your personal data used?

We will use your data for example to:

  • Provide you with the services, products or information you asked for
  • Administer your contact details and give you the opportunity to change your preferences as well as amend errors and update your data
  • Manage donations (including processing Gift Aid)
  • Support your fundraising activities
  • Help with your activities online 1
  • Keep a record of your relationship with us (including your feedback/suggestions)
  • Ensure we know how you prefer to be contacted
  • Understand how we can improve our services, products or information.
  • Screen and analyse our supporters against a demographic database for the purpose of segmentation, so that we can efficiently and cost-effectively fundraise, and ensure the most suitable level of marketing is carried out across our entire supporter base 2
  • Flag your data record accordingly– should you request to be removed from our mailing lists, or other participations, or any specific data processing or indeed if you require special treatment
  • Conduct surveys so that we can be sure our customer care and services are maintained to a high standard

We may also use your personal information to detect and reduce fraud and credit risk, or for due diligence purposes.   


  1. If you enter your details onto one of our online website forms, and you don’t ‘send’ or ‘submit’ the form, we may contact you to see if we can help with any problems you may be experiencing with the form or our websites. If we do not hear back from you, then we will assume you do not require assistance and will destroy any temporarily captured data. 
  2. Segmenting is where we classify our supporters through a process called screening, and build fundraising profiles of individuals and groups of supporters so that our communications and fundraising campaigns can be more efficiently & cost-effectively directed.

We use third party screening techniques to ensure communications are relevant and timely, and to provide an improved experience for our supporters. We will ensure your data is handled professionally and legally [DPA/GDPR] at all times by any third party data processor we engage for this activity.

Understanding our supporters and their profiles also allows us to apply our resources effectively.  We do this because it allows us to understand the background of the people who support us and to help us make the most appropriate requests to supporters who may be able and willing to contribute more.  Most importantly, it helps us to raise the vital funds, and provide the help needed, to operate as our charity and continue with the great services we provide.  It also helps to fundraise in a more efficient and cost-effective way than we otherwise would.  

When building a fundraising profile we may analyse geographic, demographic and other information relating to you, along with other data we hold relating to your activities, in order to better understand your interests and preferences so that we contact you in the most relevant and appropriate way.  In doing this, we may use additional publicly available information  if available.  

Direct Marketing

With your consent, we will contact you to let you know about the progress our charity is making and to ask for donations or other support.  Occasionally, we may include information from partner organisations or organisations who support us in these communications.  We make it easy for you to tell us how you want us to communicate, in a way that suits you. Our forms have clear marketing preference questions and we include information on how to opt out when we send you marketing. 

If you don’t want to hear from us, that’s fine.

Just let us know when you provide your data or contact us at . We do not sell or share personal details to third parties for the purposes of marketing.  If we run an event in partnership with another named organisation your contact details may need to be shared. However we will be very clear what will happen to your data at the time you register.

Sharing your story

Some people choose to tell us about their experiences with autism to help further our work.  They may take on a role as an Ambassador, Trustee or Volunteer, attend an event/s like a focus group or sit on one of our committees.  This may include them sharing sensitive information related to their health and family life in addition to their biographical and contact information. 

We use some of the information provided, including gender, ethnicity or the type of autism people have experience with, to target opportunities for involvement.  We also monitor the types of people who are involved to ensure that the views we hear are representative of all people affected by autism.

If we have the explicit and informed consent of the individuals, (or their parent or guardian if they are under 18), then this information may be made public by us at events, in materials promoting our campaigning and fundraising work, or in documents such as our annual report.

However, if after giving consent, you then change your mind, please contact us at    


We are committed to keeping your information secure. We have put suitable physical, electronic and managerial procedures in place to safeguard and secure the information we collect.If you have any questions about security please contact us at

Website Cookies

Please see our page regarding Autistica’s use of cookies on our website:

Links to other websites

Our website may contain links to other websites of interest. Our privacy policy does not apply to any other website. We cannot take responsibility for the protection and privacy of any information you provide whilst visiting other sites. We advise you to read the privacy policies of those specific websites before registering any personal data on them.

Controlling your personal informationWe will not share or sell your personal information to any third parties unless we have your explicit consent or are required by law to do so.You have the right to ask Autistica, in writing, for a copy of all the personal data held about you under the DPA/GDPR. This is called a Subject Access Request –or SAR.

We currently charge a small fee of £10 to cover admin and postage. If you would like a copy of the information held on you, please write contact us at: or call 0203 857 4340.  

Please note that you will need to provide two forms of ID in writing as proof of your identity.

If you believe that any information we are holding on you is incorrect or incomplete, please write to us as soon as possible, at the above address. We will correct any information found to be incorrect within 28 days of receipt of your request.

Notification of changes

We ask you to help us keep our records up to date by telling us, (see contact details below), when your contact details and other personal information changes.  

If you wish to know more about our data processing then please contact us and we’ll be happy to explain more.   You can also change your mind at any time about how we contact you, how we process your data, or ask us to stop contacting you altogether.

Autistica, St Saviour’s House, 39-41 Union StreetLondon, SE1 1SD.Tel: +44 (0)203 857 4340.Email:

Please note that Autistica may change this policy from time to time by updating this page. This policy was last updated on 1/8/2017.

If you have any queries regarding content on the site or this policy, please contact or at our registered address above.