EUCAP Survey 2022 - ABA

Frequently Asked Questions

Who can I contact to ask a question about the survey? 

For any matters relating to the survey, please email the EUCAP Survey Team on survey@eucap.eu.

Why is the survey only for diagnosed or self-identified autistic people and not for everyone?

A core aim of EUCAP (an umbrella organisation for autistic-led organisations) is to promote the welfare of autistic people in Europe. EUCAP seeks to do this primarily through direct engagement and participation of autistic people in the spirit of “nothing about us, without us”. Therefore, in order to guide future efforts of EUCAP about interventions and supports, we are focussing on understanding the views of autistic people. More about EUCAP can be found at About EUCAP.

This is also a matter of resources. This survey is conducted by autistic people working as unpaid volunteers. While we consider the views of non-autistic family members and professionals important, there are other organisations that have better resources to conduct broader surveys involving these groups.

When will the survey responses be reported on, and what can we expect after the survey has been completed?

Some preliminary findings will be presented at the EUCAP webinar on “Harmful approaches to autism and positive alternatives “ on 19 November – see EUCAP Webinar November 2022.

The survey runs until 30 November, and the responses will then be analysed and reported by the Survey Team. We estimate that the final report will be available by the end of March 2023. See also next question.

Some autistic people will put a lot of effort into completing the survey. How do we know that this is not just another survey?

The EUCAP Survey Team acknowledges the emotional labour and toll that completing surveys can take, especially when they are on topics that are controversial or can be triggering.  

After the survey closes on 30 November, the Survey Team will record and analyse all responses and report on results. It is hoped that the results as such will provide new and useful information for autistic people’s organisations and communities, policy makers and legislators, as well as educators, therapists, disability service providers and clinicians who work with autistic people.

Nevertheless, we recognise that in some ways this may be ‘just another survey’. We cannot guarantee widespread participation or any specific advocacy result that our work might bring about. The more people who respond, the more likely the survey is to provide useful information for autistic advocates and organisations, and have some real-life impact.

EUCAP commits to summarising the results and providing them to autistic-led organisations in such a form that they can use them in their advocacy.

This survey does not appear to have scientific validity. Do you not know or care about this?

This survey is not intended to be a scientific study. EUCAP does not have resources to do such research. The purpose of the survey is to understand more fully the landscape, the views of our members and other autistic groups and individuals, to the extent possible within the limits of our current resources. This will support our work and that of our member organisations as Non-Governmental Organisations, and hopefully inspire future scientific studies on this topic.

Isn’t this survey biased because of EUCAP’s position on ABA?

At the moment, EUCAP as a whole has no formal position on ABA. As an umbrella organisation, it seeks to understand and reflect the views of its member organisations as well as autistic people in general. 

Because of our awareness of critical views within EUCAP, some bias in this direction is inevitable. We consider it important to recognise biases and remain aware of them. The Survey Team has sought to minimise its effects. We wish to stress that all responses to the survey are welcome and equally important for us to get a realistic view of the current landscape. This is regardless of whether responses express positive opinions of ABA, a lack of knowledge or opinion about ABA, or critical views of ABA.

We have attempted to draft all questions to remain neutral so that they can be completed whether a person does or does not support ABA. For example, the question referring to “Concerns about ABA” is an open one, and could include for example concerns over not having enough BCBAs, or ABA not being available widely enough, as well as concerns about ABA being too widespread. All responses will be recorded and summarised along with other information submitted.

How can this survey be representative, when it excludes autistic people who have higher support needs by excluding the voices of their parents and carers?

There are no limitations on responding with communication support or with the help of supported decision-making, which some autistic people may require to complete their responses. We take it as self-evident that anyone with such needs is welcome to respond.

Some autistic people are also parents, carers or family members of autistic people with higher support needs, and we expect to receive some responses from them. 

Respondent views will probably not be entirely representative of the various populations participating, and we will acknowledge this limitation when reporting results. We do not claim this to be a scientific study.