From: Claire E. Hughes-Lynch, Ph.D.
January 17, 2012
I am a translator. Not of languages, but of viewpoints. Any autism information that I ever encounter is filtered through two lenses- my role as a parent of two children on the autism spectrum and as a professor of special education. I am always looking for information to share with other parents, but also, to share with teachers- both special education and general education. When I first began researching autism as a desperate parent, I soon found that there were parent voices, and there were scientist voices, and there were educator voices. My knowledge as a “teacher of teachers” with a Ph.D. in education meant that I was very able to translate from one perspective to another. I have a blog www.professormother.com that captures this dual role of mine and it has led me to write two books “Children with High Functioning Autism: A Parents’ Guide”, and “Teaching Children With High-Functioning Autism: Strategies for the Inclusive Classroom”. I have presented to parent groups and to teacher groups and to autism researchers the differing perspectives, needs and concerns of each group. I am a translator.
I am hoping to go to the International Meeting for Autism Research (IMFAR) as a parent, and as a special education professor. I have several goals that I hope to meet through this meeting.
1) Acquire information that I can share with parents. As a blogger, as a speaker, and as an author, I try to have the latest information available to share. I view information as leading us in a direction for decision-making– not necessarily a straight line, but a process of fits and starts. It is through science that we can “test” information. Parents are always looking forward, whereas science is looking backwards and making sense of the stories. I want to hear about the information that can help parents continue to look forward continue to make good decisions. There is so much misinformation out there, it is important that the “good” information be shared as much as possible and the various dialogues be presented. In order to do this, I need good data.
2) Acquire information to share with teachers. I work directly with beginning teachers in Georgia and present to experienced teachers around the country. In all cases, their lack of understanding and awareness of the diverse needs of children with autism is stunning. There are “stories” that are shared, but little information that takes the situation of the present-day classroom into consideration. I attempt to share the perspectives of parents and students, and to share what tested and effective strategies are out there and what are some promising new directions. In order to do this, I need good data.
3) Acquire information to begin my own research agenda. I have been so busy being an “autism mommy” and presenting to teachers, that I have had little to contribute to the scholarly community myself. I have studied and presented on what factors impact the satisfaction of the IEP process of parents, but I would like to really begin to determine effective intervention practices that are based on good scientific data. I have begun some preliminary work into the study of the management of anxiety and have begun searching for grants, but such attempts are in their infancy. In order to do this, I need good data.
4) Acquire information to help my husband, my family, and myself. Lastly, and certainly not least, my own children are pre-teens, and heading into adolescence. While I can talk to parents of newly-diagnosed children, I am at a loss about issues that are upcoming in my own children. I want to be able to chart a path for myself and others who are looking at how autism impacts the life span– fancy words for “How the heck do we navigate middle school, high school and adulthood, when it feels like we just barely navigated through the first 10 years?” In order to do this, I need good data.
As you can see, autism is very personal to me on so many levels. I firmly believe that as different groups- scientists, teachers, and parents- dialogue, we will find connections between strands of research and viewpoints that allow us to make good decisions, and enables people with autism to function in a society that understands and respects everyone. I have begun contributing – but In order to go on, I need good data.
Claire E. Hughes-Lynch, Ph.D.
College of Coastal Georgia (www.ccga.edu)
Parent, Professor, Part-time Blogger