Consultation with the Community

Consultation Meetings with Adults on the Autism Spectrum, Relatives, Partners and Carers

        
In June 2014, we held a series of consultation meetings with 34 adults on the autism spectrum, relatives, partners and carers. These meetings involved getting the views of the community about our research methods and plans. We consulted the community about our information sheets and consent forms. We also asked questions about methods - how should we go about collecting information?

 

What we learned:

  • We learned many valuable lessons about the clarity of our information sheets, font styles and sizes.

 

  • We also learned that we should make it clear in the information sheet how this project could result in real change for adults and their relatives / carers / partners.

 

  • We also learned to make it clear that adults could agree to join the study without having to agree to be contacted about other research projects.

 

In July 2014, we consulted the community about questionnaires we would like to use.  These included the adult and relative questionnaire that we developed that looked at aspects of the lives of adults and their relatives. We also gathered the community's thoughts about other questionnaires measuring autism behaviours, quality of life and  adaptive behaviour.

 

What we learned

  • We received some very useful suggestions of important questions to add to our adult and relative questionnaires.

 

  • We learned that some questionnaires may need a cover letter to explain some parts of questionnaires.

 

  • Many adults suggested that they preferred giving answers that involved ticking a box, while others preferred having a blank space to give their answer, both of which we have incorporated into our questionnaires.

 

Of course different people have different opinions about this research, how it should be carried out and what are the important research questions that need to be asked.

 

If you would like to send any opinions or thoughts you may have about our research please email us.

 

Here are two videos about why this important piece of research is required:

 

https://www.youtube.com/watch?v=oGXDiVL6ALA

                                             

 

https://www.youtube.com/watch?v=pkp1B6YXr_w