Home Grown Activists

What would it take to turn you into an activist (someone who devotes a part of his or her life to creating social change)? How about having a child with autism?

In class we discuss how parents have to play an important role in advocating for their child - often battling with schools or professionals to get the best possible services. Some parents have a difficult time doing this, which sometimes shows itself as depression or a lack of confidence in their abilities. We are doing research with this group and I describe this work in another post (Optimistic Parenting).

Other parents are quite successful in taking on this role as advocate. And, as someone who has worked in the field for many years, I've seen those parents who make the transition from advocating just for their child to "taking on the system" in order to make services better for others as well.

A recent qualitative study from Great Britain supports these impressions. The researchers interviewed parents to get their perceptions of their roles as parents (Ryan & Cole, 2009). They found that indeed some parents were overwhelmed with the experience. Others have different experiences - with the new challenges actually have positive effects such as making them feel better about themselves. And still other parents became "Uber parents" - those who took on more than their own child's issues and became autism activists. The study makes a point to note that the parents would not characterize themselves as "activists", perhaps because of negative connotations. However, they describe their evolution from going after help for their own child to trying to improve help for other children. For example, one parent notes;

I have been in talks with the National Autistic Society to get a representative to come to the school at some point to talk to the teachers and I also want to get the parents involved as well…But they have also asked me – they want to raise the profile of disability in the school – and they have asked me whether or not I would be willing to be involved in that and the different things that are going on and of course I’m like ‘Yep, definitely.’ (Chris, part-time administrator, son aged 8) (pg., 48)

As a qualitative study, this work can't tell us what percentage of parents will have each of these experiences. Nor can it tell us ahead of time who might have these experiences. However it provides some detail for researchers to follow-up on who might be likely to have positive or negative experiences and perhaps provide clues as to how to make the experience better for more families.

Reference
Ryan, S., & Cole, K. R. (2009). From advocate to activist? Mapping the experiences of mothers of children on the autism spectrum. Journal of Applied Research in Intellectual Disabilities, 22(1), 43-53.