This policy sets out how Autistica uses and protects your personal information, including data from your use of our website.
Autistica is the Data Controller for personal data about supporters, event attendees, grant applicants, volunteers and newsletter subscribers. For the purpose of this document we will use the group term ‘supporters’ to describe any one of these groups. Our ICO registration number is Z8884467.
We do not trade personal data for commercial purposes and will only disclose it if required by law, if it is necessary to arrange your event attendance, or if it is with your consent. Autistica uses providers based in the European Economic Area to process supporter data.
This policy is adhering to the Data Protection Act 2018 which is the UK’s implementation of the General Data Protection Regulation (GDPR).
Use the Contact Us form for any data protection queries.
Read more about the data we process and store:
Email subscribers and Autistica Network members
If you subscribe to our mailing list or join our network, you will be automatically be subscribed to receive email updates. You will only receive information that you have opted in to receive.
Depending on your preferences, we will contact you for the following reasons:
- Research updates
- Opportunities to take part in research
- Autistica campaigns and events
We will give you the option to disclose whether you are autistic or a parent to an autistic child when you register. This is important so that we can send you the most relevant information. You can choose to not tell us this information if you wish.
We use Dotdigital to manage our email marketing. Dotdigital are a UK-hosted email service who store their data within the EU. They do not share data with third parties.
See Dotdigital’s privacy policy.
We transfer all contacts to our Raisers Edge database which is UK hosted and owned by Blackbaud. This system is kept updated with your marketing preferences.
You can change your email marketing preferences at any time, by clicking ‘unsubscribe’ or ‘manage preferences’ on any of our emails or by contacting: info@autistica.org.uk
Survey responders
If you take part in a survey run by Autistica you will use either the service within our email provider - Dotdigital, or survey platform SmartSurvey. Both platforms hold data in the UK, and dotmailer are signed up to the EU-US Privacy Shield. They will not share survey data with any third parties.
See Dotdigital’s privacy policy.
See SmartSurvey's privacy policy.
If you prefer to submit responses to these surveys in another format, please contact info@autistica.org.uk.
We will only re-contact you following a survey if you have expressed consent.
Donors, volunteers and fundraisers
We store supporter data on our Raisers Edge database which is UK hosted and owned by Blackbaud. This system is kept updated with your marketing preferences. As we get to know you, we will collect and store the following types of information:
- Name, title/s and full postal address
- Bank, credit card and payment details
- 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 about us
- What kind of connection you have with our charity
- Why you have decided to donate to us - 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.
We do not store sensitive personal information that you share with us unless there is a clear and valid reason for doing so.
We will use your information 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 Keep a record of your relationship with us (including your feedback)
- 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
- Flag your data record– for example if you request to be removed from certain mailing lists, opt out of any specific data processing, or if you have special requirements
- 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.
We need to keep the details of financial transactions for 7 years after the financial year of a donors last gift, in the event of a tax or banking enquiry. We will only contact you to thank you. If you say that you would like to hear from us, you will be added to our email subscriber list and will receive regular updates and fundraising asks. You can change your preferences on these updates at any time.
If you make a personal one-off gift of £500 or more, we will treat you as a major donor. Read our Major Donor Privacy Policy.
Contact form users
If you get in touch with us via the contact form on the website, we may save the details you share with us on our database. This way, if you get in touch with you in future we can refer to our previous conversations. We will not contact you or share your details without asking for your consent.
Our Raisers Edge database is UK hosted and owned by Blackbaud. This system is kept updated with your marketing preferences.
Website visitors
We use Google Analytics (GA) to track site user interaction. We have GA code installed on our site which creates one or more text files on your computer (called a “cookie”). The cookies contain an ID number which is used to uniquely identify your browser and track each site you visit that has GA enabled.
We use this data to determine the number of people using our site and to better understand how they find and use our web pages. With this information we can continually improve the information that we provide on our site and the processes for actions such as contacting us and donating. We can also use it to increase the number of new people finding our site.
Google analytics stores the following data:
- Time of visit, pages visited, and time spent on each page of the webpages
- Interactions with site-specific widgets
- Referring site details (such as the URL a user came through to arrive at this site)
- Type of web browser
- Type of operating system (OS)
- Flash version, JavaScript support, screen resolution, and screen color processing ability
- Network location and IP address
- Document downloads
- Clicks on links leading to external websites
- Errors when users fill out forms
- Clicks on videos
- Scroll depth
Google also collects information about you from its Doubleclick tracking and profiling service, from ad-supported apps on your Android or iOS device, from your YouTube and Gmail activity and from your Google account. This data is put together and used to make inferences about your age, gender, interests, hobbies, shopping habits and living circumstances.
Your rights
If you already have GA cookies, they will be updated with the latest information about your visit to the site.
As we cannot access any personal data about you ourselves, we are not the Data Controller for your Google Analytics or Doubleclick profile data. You would need to contact Google directly for this information.
You have the right to object to this tracking and to stop it happening.
If you would like more detail about the methods used however, please get in touch at info@autistica.org.uk.
How do I prevent being tracked by Google Analytics?
If you are uncomfortable with this tracking, you can take the following actions:
- Use a tracking-blocker, such as Privacy Badger
- Clear cookies after every browsing session
- Install the Google Analytics opt-out extension
Researchers who join the Autistica Network
If you join our Autistica Network (formerly the Discover Network), you will be automatically be subscribed to receive email updates. You will only receive information that you have opted in to receive.
Depending on your preferences, we will contact you for the following reasons:
- Research updates
- Opportunities to take part in research
- Autistica campaigns and events
We will give you the option to disclose what stage your are at in your career. This is so that we can send you the most relevant information. You can choose to not tell us this information if you wish.
We use Dotdigital to manage our email marketing. Dotdigital are a UK-hosted email service who store their data within the EU. They do not share data with third parties.
See Dotdigital’s privacy policy.
We transfer all contacts to our Raisers Edge database which is UK hosted and owned by Blackbaud. This system is kept updated with your marketing preferences.
You can change your email marketing preferences at any time, by clicking ‘unsubscribe’ or ‘manage preferences’ on any of our emails or by contacting: info@autistica.org.uk
Researchers who apply for funding
We store your data on a database called Salesforce. Salesforce comply with compliance with the EU-U.S. Privacy Shield Framework.
We will only contact you regarding your application. If you wish to hear from us about future funding opportunities, you will need to join Discover.
Facebook users
You may come across Autistica naturally on Facebook through your own networks, or you may be presented with an ad from us. We target ads at audiences that look like they have an interest in autism. We do this to inform, educate and engage new potential supporters.
Facebook is a hugely valuable tool for us and for the community that we serve, which is why we use the platform. Facebook however is a commercial company. We want to remind our users that formation that shared on timelines, on our page or in private messages may be used or sold by Facebook for commercial purposes.
Event attendees
When you attend an Autistica event, we will need your name, email address and in some cases your payment information. We will use this information solely for the purpose of administering the event. We delete event attendance data at the end of every year. We use Eventbrite to manage event registrations. They may contact you about other events that may be of interest to you, but only if you opt in when you register with them. Read Eventbrite's privacy policy.
If you are a speaker at an Autistica event, we will publically promote your involvement via Twitter, LinkedIn and emails to our supporters. This data may continue to be processed by those platform providers after the event has ended.
Employees and job applicants
If you apply to work at Autistica, we will only use the information you give us to process your application and to monitor recruitment statistics. If we want to disclose information to someone outside Autistica - for example, if we need a reference, or need to get a ‘disclosure’ from the Criminal Records Bureau - we will make sure we tell you beforehand, unless we are required to disclose this information by law.
If you are unsuccessful in your job application, we will hold your personal information for 12 months after we’ve finished recruiting the post you applied for. After this date we will destroy or delete your information. We keep de-personalised statistical information about applicants to develop our recruitment processes, but this does not contain any information that could be used to identify individual job applicants.
If you begin employment with us, we will put together a file about your employment. We keep the information in this file secure, and will only use it for matters that apply directly to your employment.
Once you stop working for us, we will keep this file according to our record retention guidelines. You can contact us to find out more about this.
Joining ASD-UK
ASD-UK is a database run by Newcastle University. We host the information and project pages on our website. When you follow the link to join ASD-UK you will be taken to a registration form on a Newcastle University website. At this point any data you enter is only seen by Newcastle University, they act as the data controllers.
How your data is used by ASD-UKAutistica Tips Hub
This statement sets out how Autistica uses and protects your personal information including data from using the Autistica Tips Hub app.
Autistica is the Data Controller for personal data about users of the Autistica Tips Hub app. Our Data Protection Officer is Jennie Chambers (Director of Income Generation).
Data protection statement
This statement outlines how Autistica and our technical partners Incepteo Ltd handle your personal data from using the Autistica Tips Hub, in compliance with the General Data Protection Regulation (GDPR).
Autistica is the Data Controller for personal data about supporters, event attendees, grant applicants, volunteers and newsletter subscribers. For the purpose of this document we will use the group term ‘supporters’ to describe any one of these groups. Our ICO registration number is Z8884467.
We do not trade personal data for commercial purposes and will only disclose it if required by law, if it is necessary to arrange your event attendance, or if it is with your consent. Autistica uses providers based in the European Economic Area to process supporter data. This policy is adhering to the Data Protection Act 2018 which is the UK’s implementation of the General Data Protection Regulation (GDPR). To contact us about your data on the Tips Hub, please email tips@autistica.org.uk
Ethics statement and the use of AI
At Autistica, we are committed to conducting research and implementing AI technologies in a manner that upholds the highest ethical standards. Our guiding principles include:
Respect for individuals: We prioritise the dignity, rights, and autonomy of all individuals, particularly those with autism and their families. Our research and AI applications are designed to enhance their well-being and support their needs.
Transparency and accountability: We maintain transparency in our research processes and AI implementations. We are accountable to our stakeholders, including the autistic community, researchers, and the public, ensuring that our methods and outcomes are openly communicated.
Data privacy and security: We adhere to stringent data privacy laws and regulations, ensuring that personal data is collected, stored, and used responsibly. We implement robust security measures to protect sensitive information from unauthorized access and breaches.
Fairness and non-discrimination: Our AI systems are developed and tested to avoid biases and ensure fairness. We are committed to non-discrimination and strive to create inclusive technologies that benefit all individuals, regardless of their background or characteristics.
Beneficence and non-maleficence: We aim to maximize the benefits of our research and AI applications while minimising potential harms. Our projects are designed to provide positive impacts on the lives of autistic individuals and their families.
Collaboration and community engagement: We actively engage with the autistic community, researchers, and other stakeholders to ensure our work is relevant and beneficial. We value their input and collaboration in shaping our research and AI initiatives.
Continuous improvement: We are dedicated to the continuous improvement of our ethical standards and practices. We regularly review and update our policies to reflect advancements in technology and changes in societal expectations.
By adhering to these principles, the Autistica Tips Hub aims to foster trust, promote ethical research, and create AI technologies that truly benefit the autistic community.
Data handling for the Autistica Tips Hub
Data controller
Autistica is the Data Controller for all personal data collected and processed about users of the Autistica Tips Hub app in relation to our improvement of the app, and related research and campaigning activities. As the Data Controller, Autistica determines the purposes and means of processing personal data.
For general queries about the data collected about you when using the Tips Hub send an email to tips@autistica.org.uk
Data processor
Incepteo Ltd is appointed by Autistica as technical partner and the Data Processor. Incepteo Ltd processes personal data on behalf of Autistica, strictly adhering to our instructions and ensuring compliance with GDPR requirements.
Our commitment
Both Autistica and Incepteo Ltd are committed to safeguarding the privacy and security of personal data. We implement appropriate technical and organisational measures to protect data from unauthorised access, disclosure, alteration, or destruction.
What information is collected?
When you use Autistica Tips Hub, we collect the following personal information:
Name
Email address
Password
Age
Profile picture
App usage
Phone details (make, model, operating system, etc.)
Demographic data (age, gender, etc.)
You may opt out of providing some of this information.
We adopt the principle of data minimisation. This means that we only collect personal information that is relevant to the app’s purpose and needed for the app to work properly. If the purpose of data collection changes, we will inform you and, if necessary, obtain your consent.
You have the right to withdraw consent for the user of your personal data. To do this, please email tips@autistica.org.uk
If you are aware of a child accessing the app and providing personal data without the consent of their parent or guardian, you can report this by emailing tips@autistica.org.uk
How is the information used?
Some of this information, such as your name and email address, is used to create your account. Other information is used to personalise the app and enable core functionality (for instance, to allow you to do a check-in). We ask you to confirm your age because the Tips Hub is recommended for use by people over the age of 16.
Aggregated data may be used for statistical analysis and reporting purposes and for continuous improvements to the app. Personalised data will not be shared with any outside party for commercial purposes and will only disclose it if required by law or with your consent.
If you allow us, we may also collect anonymous information about your app usage including your phone details. We use this to determine how many people are using the Autistica Tips Hub and how they are using it. This helps us to continually improve the app. It is not linked to other data to identify you individually. You can opt out of providing this information.
When you register, we may also ask you some demographic questions (age, gender, etc.). This helps us to understand what type of people are using the Autistica Tips Hub. This information is anonymous. It is not linked to other data to identify you individually. You can opt out of providing this information.
Although we use your personal data to personalise the contents of the app, it will not be used for automated processing, including profiling, with legal effects (or similar).
Data storage and transit
The Autistica Tips Hub data is hosted using Microsoft Azure SQL Service. These servers are also physically located in the UK South region.
Your data is protected with strong encryption when it is stored and while it is in transit.
Data retention
We use your data to create your Autistica Tips Hub account and provide functionality related to the app. As a result, we will retain the data for as long as we provide Autistica Tips Hub or a similar, equivalent, or complementary app or web service – and for a period of ten years following this.
Third parties
If you choose to sign in to Autistica Tips Hub using Facebook or Google, Autistica Tips Hub app will receive your email, name, birthday and profile picture through an access token. Autistica Tips Hub does not pass on any personal data during this process.
If your follow a link to a third-party website (not operated by Autistica), this privacy policy no longer applies and you should consult the privacy policy for this third party.
Your rights
Please see below for your list of rights as an individual whose data is processed by Autistica.
To exercise any of these rights, including deletion of your account and your data, please write to tips@autistica.org.uk. We will normally acknowledge receipt of your email within one week and respond to your request within one month. However, most enquiries will be dealt with more quickly than this.
Your rights
As an individual whose personal data is processed by Autistica you have the following rights:
- the right to be informed – which is what this privacy notice is for
- the right to access the data we hold about you the right to object to direct marketing – either use the ‘unsubscribe’ button on our emails or contact us directly
- the right to object to processing carried out on the basis of legitimate interests
- the right to erasure (in some circumstances)
- the right of data portability
- the right to have your data rectified if it is inaccurate
- the right to have your data restricted or blocked from processing To exercise any of these rights, please use the Contact Us form to get in touch.
More information on these rights is available at https://ico.org.uk/your-data-matters/
If you are not happy with the way we have handled your data, and are unable to resolve the issue with us personally, you can complain to the ICO.