Parent/caregiver survey on challenges, crisis and support needs of autistic and/or disabled children and young people in Ireland

What is this survey about?

We are doing a research project as part of the Autism Innovation Strategy 2024 to learn more about the support needs of autistic and/or disabled children and young people in Ireland, and the kinds of challenges they and their families sometimes face. The goal of this research is to help improve support services for children, young people and families.

We also want to explore circumstances when things get really hard for these families or feel like they’ve reached “crisis” point. We are interested in what supports children, young people and families need, and which services work well – or do not – during such times.

“Crisis” for these families may mean:

“any situation in which they feel they – or their loved one – need help urgently. […] a crisis can mean feeling unable to cope with their situation or keep themself or those around them safe. They – or their loved one – may also feel great emotional distress or anxiety.”

Crisis situations do not fall easily under a single definition as circumstances are so unique to an individual and to a family. They can be sudden and acute or can build up over time. For the purposes of this survey, we are interested in all situations parents/carers/guardians have perceived as being a crisis, or close to crisis point, due to issues related to caring for their disabled/autistic child or young person. However, please note that medical crises and supports for medical issues are not the focus of this research.

Who should complete this survey?

Parents, carers or guardians of children and young people (up to age 23) who are autistic and/or disabled (e.g. have an intellectual disability, or a mental, emotional or psychological condition) who have experienced or have been close to experiencing a crisis related to caring for their child or young person.

If this is you, you can take the survey.

Please do not complete the survey if you are currently in crisis or acute distress, as we cannot provide direct support.

Who is conducting this survey?

The National Disability Authority (NDA) is an independent statutory body that provides information and advice to the Government on policy and practice relevant to the lives of persons with disabilities. At the request of the Department of Children, Disability and Equality, the NDA is conducting this research (Action 83 of the Autism Innovation Strategy, 2024). Although part of the Autism Innovation Strategy, the study is about children and young people with any disability, not only autistic children.

Before deciding whether to take part, please read the information below carefully. Take time to consider it and contact the project manager Dr Carly Cheevers at 087 6712376 or at research@nda.ie if you have questions.

This research was approved by the Research Ethics Committee Midlands Area and Corporate Division (HSE Dublin & Midlands) in 2025.

What will happen to the findings?

Findings will be reported to the Department of Children, Disability and Equality, the HSE, and other relevant organisations. The NDA will have a seminar to launch the report and will publish it on our website and disseminate it through our social media channels (see nda.ie and NDA on LinkedIn, X and Bluesky). Participants are welcome to attend the launch of the report to see the impact their participation has had on our understanding of these children, young people and families in Ireland.

How long will it take and what will I be asked?

The survey takes 15–30 minutes, depending on your answers. You can choose to stop at any time and your answers to that point will be included.

We will ask:

• if your family has experienced (or was close to experiencing) a crisis relating to caring for your child/young person. If so, we will ask about this experience, the supports your family received and the supports they needed.

• about your life now - the support needs of your child/young person (for example, communication, behaviour, mental health), satisfaction with supports they receive/have received, and your own wellbeing.

Can I change my mind?

The survey is anonymous, so we will not collect names or any details that identify you. As we cannot identify you, once you submit your answers, we cannot remove them.

Benefits of taking part

There are no immediate personal benefits. However, your views and experiences may help inform improvements in services for children, young people, and families in the future.

Risks of taking part

This survey aims to be as sensitive as possible but as it is about challenges and crises, some questions may feel upsetting. For this reason, we ask that people currently in crisis or distress do not take part.

If you do feel upset while completing the survey, you can:

• take a break,

• decide whether or not to continue, or

• stop at any time.

We will provide a list of support services at the end of the survey should you need them.

Please do not complete the survey if you are currently in crisis or acute distress, as we cannot provide direct support.

Who is conducting this survey?

The National Disability Authority (NDA) is an independent statutory body that provides information and advice to the Government on policy and practice relevant to the lives of persons with disabilities. At the request of the Department of Children, Disability and Equality, the NDA is conducting this research (Action 83 of the Autism Innovation Strategy, 2024). Although part of the Autism Innovation Strategy, the study is about children and young people with any disability, not only autistic children.

Before deciding whether to take part, please read the information below carefully. Take time to consider it and contact the project manager Dr Carly Cheevers at 087 6712376 or at research@nda.ie if you have questions.

This research was approved by the Research Ethics Committee Midlands Area and Corporate Division (HSE Dublin & Midlands) in 2025.

What will happen to the findings?

Findings will be reported to the Department of Children, Disability and Equality, the HSE, and other relevant organisations. The NDA will have a seminar to launch the report and will publish it on our website and disseminate it through our social media channels (see nda.ie and NDA on LinkedIn, X and Bluesky). Participants are welcome to attend the launch of the report to see the impact their participation has had on our understanding of these children, young people and families in Ireland.

How long will it take and what will I be asked?

The survey takes 15–30 minutes, depending on your answers. You can choose to stop at any time and your answers to that point will be included.

We will ask:

• if your family has experienced (or was close to experiencing) a crisis relating to caring for your child/young person. If so, we will ask about this experience, the supports your family received and the supports they needed.

• about your life now - the support needs of your child/young person (for example, communication, behaviour, mental health), satisfaction with supports they receive/have received, and your own wellbeing.

Can I change my mind?

The survey is anonymous, so we will not collect names or any details that identify you. As we cannot identify you, once you submit your answers, we cannot remove them.

Benefits of taking part

There are no immediate personal benefits. However, your views and experiences may help inform improvements in services for children, young people, and families in the future.

Risks of taking part

This survey aims to be as sensitive as possible but as it is about challenges and crises, some questions may feel upsetting. For this reason, we ask that people currently in crisis or distress do not take part.

If you do feel upset while completing the survey, you can:

• take a break,

• decide whether or not to continue, or

• stop at any time.

We will provide a list of support services at the end of the survey should you need them.

Next phase of the research

After the survey, the next stage will involve interviews with:

• parents/carers who have experienced a crisis while caring for their autistic/disabled child or young person (up to age 23),

• autistic/disabled children and young people (up to age 23) who have experienced crisis, and

• key stakeholders such as Disabled Persons Organisations (DPOs), health and disability professionals, therapeutic services, schools, and law enforcement.

At the end of the survey, parents/carers who have experienced a crisis will be invited to fill in a separate form (not linked to their answers) if they are interested in being contacted by an NDA researcher about taking part in an interview (for themselves or their child).

Support services

Talking or thinking about sensitive topics can sometimes bring up strong feelings or memories. If you feel upset or need to talk to someone, support is available:

Samaritans
Freephone: 116 123 (24-hour Helpline)
Email: jo@samaritans.ie Website: https://www.samaritans.org/ireland/

Aware
Freephone: 1800 80 48 48 (7 days a week from 10am to 10pm)
Email: supportmail@aware.ie Website: https://www.aware.ie/

Turn2Me
Contact: https://turn2me.ie/contact/

Pieta House
Freephone: 1800 247 247 (24-hour Helpline) Text: 51444 (standard message rates apply)
Website: https://www.pieta.ie/

Information about the protection of your data

Survey data

1. We will only seek to collect and analyse the data necessary to answer our research objectives.

2. The National Disability Authority has a statutory remit to 'undertake, commission or collaborate in research projects and activities on issues relating to disability and to assist in the development of statistical information appropriate for the planning, delivery and monitoring of programmes and services for research disabilities' (see NDA Act 1999 Part 2 Section 8). This research is in accordance with the legitimate interests of the NDA and Article 6 (a and e) of the General Data Protection Regulation 2016 provides the legal basis for processing personal data. Legal authority to process personal data is also claimed under Article 9 of the General Data Protection Regulation 2016.

3. You have a right to object to automated processing including profiling. This project does not engage in automated processing or profiling.

4. Your personal data will not be used for any other purpose.

Methods to protect your data

1. This survey is anonymous. However, we will ensure that any of our published findings or quotes do not include such detail as to possibly identify anyone.

2. Access to participants’ survey data will be restricted to the research team who have all received training in data protection.

3. Although robust data security measures are in place, data breaches and or theft are possible, however, the likelihood of this is considered to be low. The consequence of a data breach could be a loss of privacy to the individual and a loss of reputational damage to the NDA and the Department of Children, Disability and Equality.

4. You have a right to lodge a complaint with the Data Protection Commissioner. The offices of the Data Protection Commissioner are at 21 Fitzwilliam Square South, Dublin 2.

5. Your data will not be transferred to a country outside of the EU or an international organisation.

Further questions?

Please do not hesitate to contact us by email or write to us. Our contact details are provided below.