One of the interesting and somewhat unexpected aspects to finally conducting my own research has been the variety of feedback and responses to it. Thankfully most have approached their responses in a polite and pleasant manner which is greatly appreciated. From information and requests to alter phrasing to be more inclusive through to overall comments on the survey design itself. By and large I can and will adjust as requested as a) I genuinely don’t intend harm or distress towards others and b) I am only human and I can and will make mistakes – happy to learn and grow from that.
What is harder to balance is the needs of various groups. These range from established committees and institutions through to advocacy groups and unofficial collections of like minds. Some times the needs of one is incompatible with the needs of another and as a researcher stuck in the middle it’s up to me to try navigate my way through that. A small example is the clearly expressed needs within the Autistic community to use identity first language. On the other hand there is clear guidelines in place regarding publication etc that insist on person first language – which is expressed as beneficial within other circles. In my own home we use either or as frankly I’m just amazed that I can hear my children communicating to me verbally now and am not about to correct them on technicalities.
So using the above as an example, I am faced with a situation where even though I can freely use identity first language in my survey and on my own informal writing (hopefully this will include the lay summary in October) I may very well get to a point where I am instructed to use the established language of the organizations and publications of my profession. Now I certainly will were possible outline my case for my intention to use identity first language and am willing to put up a bit of a fight HOWEVER if it comes down to it I feel its more important to have the results of my research out there contributing to the knowledge surrounding Autism and Parenting. My participants have generously given me their time and have shared information that is personal to them with me, they deserve their voice to be heard and ultimately journal publication is the most beneficial manner in which to do that.
I can only hope that these moments of competing needs and conflicts are few and far between because I do feel it. I don’t want to distress or upset people. I also am only one person and can do only so much – remember my post on being limited. Thankfully I have a great supervisor and peers to bounce ideas off and help me navigate this process. It’s not easy for an introvert to put themselves out there, and I know I wonder daily why I am doing this. But then I look at my kids and know why, they deserve to have the right information out there about who and what they are. I can’t talk from the perspective of being Autistic but I sure can talk from the perspective of being a parent to them. So I’ll keep putting myself out there and doing what I can within my capacities. And when I “get it wrong” and have the not so pleasant feedback I will put a blanket over my head and cuddle my cat until I’m ready to keep going.