‘Growing Up’: A project supporting transitions from childhood to adulthood for unpaid carers of autistic young people aged 14-25 living in Glasgow, Ayrshire, Inverclyde, Falkirk and Highland
The National Autistic Society Scotland and Carers Scotland are working together to develop a programme of support for unpaid carers of autistic young people.

We have been successful in securing funding from the Alliance to develop this project and are looking to work collaboratively with unpaid carers to co-design and oversee this project.

Our aim is to develop a programme to empower unpaid carers to make more informed decisions, access the right support and self-advocate for themselves and their autistic young person. It is our hope that eventually this programme will be available to all unpaid carers of autistic young people living anywhere in Scotland.

To support this collaboration and inform our programme, we have drafted a short questionnaire, which we appreciate your time in completing.

Question Title

* 1. Are you an unpaid carer of an autistic child/young person?

Question Title

* 2. How many autistic children/young people do you have?

Question Title

* 3. What age is/are your autistic child/children/young person (please tick for each child you have)?

Question Title

* 4. Which local authority area do you live in?

Question Title

* 5. Has/have your autistic child/children gone through a period of change related to growing up, sometimes this is described as a transition?

Question Title

* 6. Overall, how would you reflect on that experience?

Question Title

* 7. Please describe why you experienced the change in this way?

Question Title

* 8. Do you worry about the prospect of the change associated with growing up? 

Question Title

* 9. As an unpaid carer, please describe what worries you have about this?

Question Title

* 10. Do you believe you know where to get help/information from about this change/transition?

Question Title

* 11. If yes, please describe where you would get this help/information

Question Title

* 12. Do you feel there are services and support available to you as an unpaid carer to help with this change/transition?

Question Title

* 13. If yes, please list what services/supports you know are available

Question Title

* 14. As an unpaid carer of an autistic child/young person aged 14-25, would you want to take part in a programme of support about this change/transition period?

Question Title

* 15. As part of a programme of support for you as an unpaid carer, we will run a series of 90 minutes to 2 hour workshops. What would be most important for you to know/have help with? (Rank according to most important to you: 1,2,3…) Suggested options are

Question Title

* 16. Do you have any suggestions on other relevant topics not listed in the previous question?

Question Title

* 17. Thinking of the topics suggested in Q14, how many workshops would you feel you could attend as part of any programme?

Question Title

* 18. What times of the day work best for you in terms of attending a programme of workshops?

Question Title

* 19. Would you prefer a virtual, in-person or a mixture of workshops?

Question Title

* 20. Thinking of your other commitments over what period of time would you like to attend a programme of workshops?

Question Title

* 21. Alongside this programme of activity we would like to design a resource pack with information from the sessions to further support unpaid carers.  Would you like to receive these

Question Title

* 22. Do you speak with other unpaid carers about your caring role?

Question Title

* 23. Do you feel that peer support with other unpaid carers would be important to develop as part of the support you receive in this programme?

Question Title

* 24. We would like to share our learning from the workshops with other professionals.  What groups of professionals do you think we should include?

Question Title

* 25. Is there anything else you would like to say about the period of change that occurs when an autistic child is growing up and the impact that this has on you as an unpaid carer?

Question Title

* 26. Would you like to be involved in helping to shape and inform the delivery this project?  Note: this is restricted to carers living in one of the pilot areas Glasgow, Ayrshire, Inverclyde, Falkirk and Highland

Question Title

* 27. If yes, how often do you feel would be valuable?

Question Title

* 28. If yes, please submit name

Question Title

* 29. If yes, please submit email address

Question Title

* 30. If yes, please submit phone number

Question Title

* 31. If yes, what is your preferred method of contact?

Carers Scotland have undertaken this survey on behalf of The National Autistic Society and Carers Scotland. Carers Scotland is part of Carers UK.  Carers UK is committed to protecting your personal information and being transparent about what we do with it, no matter how you interact with us. You can read our privacy statement on the Carers UK website

The data we collect in this form is held by Carers Scotland and used solely for the purposes of the Growing Up Project and we will only contact you in relation to the Growing Up Project, unless you give us express permission to do otherwise.  The data collected in this survey will be shared with the National Autistic Society for the purposes of the Growing Up Project.

For using the information for any other purpose beyond administration, evaluating and reporting on the Growing Up Project, we must seek your consent.  

T