Her elder son, who starts high school this fall, was diagnosed at age eight. As an employee of the University, Monica was already aware of the University of Miami-Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD), and she and her family connected to UM-NSU CARD’s programs and support groups.
Talking to other parents about their children’s academic challenges gave her the impetus to study the transition of high school students with ASD into higher education, and what makes for a successful college experience for these students. Her resulting dissertation, Academic Transition and Success Experiences of College Students with Autism Spectrum Disorder (ASD), will add to the limited literature available on the topic, from the students’ perspective.
What made you decide to pursue a doctorate in this area?
As a parent of two children with ASD, I had already been volunteering in the community, helping [students] with their academics. I also heard a lot of parents like me in groups at CARD talk about the challenges we have with academics and IEP [Individualized Educational Program] planning, and just year after year re-educating teachers on the specific needs of kids with autism, so they can better serve our kids. And I wanted to learn whether that was also the situation in college.
I was also inspired by Dr. Diane Adreon at CARD, who literally wrote the book on how to raise high-functioning kids with autism. She is also a mom, she was just researching as I do, day to day, how to give my kids the best opportunity to succeed, to show their full potential and to function and thrive in a world that really, at times, doesn’t get them. I reached a point where I thought about [getting a degree] and she told me ‘do it—we need more.’
Your research focuses on academic success factors—tell us how that came about.
I wanted to give college students with ASD a chance to speak out on their experiences, to tell us what works for them. And once I started down that path, I was really surprised at the gaps in research in terms of autistic college students and their academics. Most of the literature out there covers the social challenges that kids with autism experience. And a lot of it also focuses on the failures—there’s a definite gap in understanding of what works for these students, what the success stories are. We don’t have a clear picture of what a successful transition to higher education looks like. So, I went ahead and put a proposal together for this [area] of research—and the chair agreed that it would be a worthwhile topic.
What are some of the things you have discovered?
To begin with, the more kids and adults with autism I interacted with—and the bigger my kids get—the more I learned that their stories are being told by others, by people on the periphery, the psychologists, the support people. Their first-hand accounts of their experiences in this world are not being highlighted. That became a driving force for me.
Half the sample group that I interviewed for my study have communication issues—but they so much wanted to tell their stories, not just their challenges, their successes also. One big thing that the students told me was that the ways they experience life with ASD are not all the same. Everyone tries to put them in the same box, because we think if we understand one person with autism, we ought to understand automatically all their situations, and that’s just not true. I’m finishing up my dissertation—getting the research out so that others can benefit from it. In the end it will have been well worth it if it helps another family.
How has the University supported you as a staff member in this journey?
One thing that I don’t think a lot of people know is that there are benefits that are available to employees that are not fully connected with your health insurance. So, for example, the social skills training that my older son did at CARD—a nine-week course—was covered. That, to me, is a unique thing that not every school has and is another way the University supports us, not just as employees, but as parents.
What misconceptions about people with ASD do you most want to eliminate?
That they’re all intellectually challenged. About half the population goes on to post-secondary education and go on to be productive citizens and members of their communities. Now, they struggle to get there, and we need to help them stay there and persist and thrive.
Another is [the notion] that autism is a problem that needs to be fixed. To me, that's critical, because if the community is not aware and accepting of those with autism, they think it's a problem to fix. I can tell you from being in the autism community, as a parent, that kids don't want to be fixed. They want to be accepted for who they are, and they want to have opportunities just like everybody else. We need to help them get there.
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