When I initially applied to this research program, I had no idea how much work goes into simply getting research APPROVED. The process of submitting work to the IRB can come with an excruciatingly long waiting period, when the researchers have no idea whether to progress on, assuming their work will be approved, or to halt all investigations until there is a 100% assurance that their work is valid and ethical. In the time that it took for the IRB to approve our surveys, I started to feel anxious, a little annoyed that it would take so long, and honestly…I became a little lax in my research. Professor Molina and I had completed our surveys months ago, and only just distributed them to our demographic for feedback. We yielded sixty-one responses. I am very proud of those responses, and can now begin a more in-depth and involved research process. Up until now, I had felt a little lazy in my research, as I did not have much to work with besides what research has already been done on the topic. Not surprisingly, much work has been done on the sibling relationship of people with autism. Especially over the last decade or so when autism diagnosis has been on the rise – it means that even more siblings are effected. What makes our research unique is that we are working with college-age participants, unlike children or babies with whom most autism-sibling research is done. People with autism in college obviously have what it takes to be an integral member of the social community and who are on the precipice of starting their own lives. Their perspective on their sibling support is much deeper and stronger than that of children, whose relationships with their siblings is just beginning to develop.
After Professor Molina submit our survey to the IRB, he requested that I partake in and complete a three hour online course that teaches about the ways to protect human research participants. I completed the course, and am now fully certified and educated in the proper treatment of humans used in a research process. It is not just a matter of asking questions, observing and getting answers. The questions you ask must be ethical. You must inform the participants on ever facet of the research, and they must know that they can withdraw their participation at any time. There are many rules that go into being qualified to utilize humans in your research, and I had no idea of these things prior to this course.
We will now proceed to extrapolate from our responses data to put into charts. We will compare and contrast the responses, and see how we can generalize the information. Now that we have concrete data, we can really dig into finding out more about how effective and beneficial it is for people with autism to have siblings to support them. I know I will personally make up for the time that was lost in our research due to waiting for approval.
At this time in our research, we have completed our primary questionnaires for both college-aged people with Autism, as well as people who are siblings of people with Autism in college. We are currently waiting for the IRB to approve our questions, so we can then proceed with distributing these questionnaires and compiling data.
As we do not have any solid data yet, I can only speculate on what sort of things we will find. I hope that our participants are candid and honest, as that will help us best in our research. This may be a very sensitive subject matter, and talking about personal experiences may pose a challenge to many participants, I think it can be very cathartic to talk about difficult things. Sometimes people with Autism do not have any one to talk to about their personal experiences, and their day-to-day life is very regimented and there is no time to reflect on their emotions or daily experiences. Our research will give people will Autism a chance to talk about and explore a topic they may not have a chance to discuss otherwise. What do their siblings mean to them? Have they ever recognized their siblings as life-long teachers? How do they think they would have been different without their sibling(s)?
I also think this process will let the siblings of people with Autism discover how truly instrumental they are, and will continue to be in their Autistic sibling’s life. It will allow them the opportunity to reflect on all they do for their sibling. I hope that they feel like they can open up. If both parties are honest in their answers, we can gather a lot of important data from their answers. I look forward to the IRB’s approval of our questionnaire so we can begin!
The purpose of this research is to identify and characterize the benefits of sibling support for people on the Autism spectrum. Our demographic focus is on college students, between the ages of 17-25, as siblings often play a huge role in support at this transitional juncture in a person’s life. Siblings of all ages offer people with Autism uniquely different, but key levels of support. This support can motivate them, teach them and push them forward while they acclimate to the college setting. We will outline and narrowly define our definition of support in our research. Through surveying people in college with Autism Spectrum Disorder, as well as siblings of people with Autism Spectrum Disorder, we intend to find specifically what sibling support does for people on the spectrum. Siblings are often the best role models, as their relationship is lifelong, and extends past parental relationships, and friendships, which can come and go. A sibling can teach you, simply by existing in your world. Siblings of people with Autism teach invaluable lessons, which often cannot be taught in school programs. They can teach a person with Autism things like how to forge meaningful relationships, how to handle stressful situations, and how to be a self-advocate, which are all examples of important lessons to know before college, or during college.
This research will be conducted through surveys, as well as a second component of personal, individual interviews. This research will shed light on how people with Autism interpret their sibling support, how siblings of people with Autism understand the support they offer, and maybe even how studying these important sibling relationships can offer insight on how best to cater teaching to people in the college setting with Autism Spectrum Disorder. We hope to give a voice to a demographic who are rarely discussed; the siblings of people with Autism, and to shed light on their meaningful relationships with their brother or sister with Autism.