Post by Autism Speaks summer interns Marissa Solberg (center left) and Martin Florimon (center right) with Autism Speaks science staff Amy Daniels (left) and Michael Rosanoff.
Also see the videoblog “Meet Autism Speaks 2014 Science Interns” for an introduction to their projects and the special relationship between Autism Speaks and Holy Cross, alma mater of co-founder Bob Wright.
Marissa: In high school, I worked two summers at a camp for children severely affected by autism. The program helped ensure that these wonderful children didn’t regress during the months they were away from their special-education classrooms. Unfortunately I saw many of them lose skills that they had painstakingly gained through behavioral therapy. It was discouraging. The experience also opened my eyes to how many children, in just one community, were on the autism spectrum. It made me realize how common the disorder is.
Because of this experience, I applied for a summer internship with the Autism Speaks science team. I hoped to make at least a modest contribution to advancing understanding and support for the autism community.
The description of the summer science internship began with the CDC’s estimate of autism prevalence among children. Something about that number – 1 in 68 children – brings home autism’s magnitude. Then, I learned that the intern’s summer research project would be to help guide a future study on autism prevalence among adults.
I found it alarming that no one really knew what the prevalence of autism was among adults. It made me realize that there may be an untold population of adults who are on the spectrum but have never been diagnosed and, so, aren’t receiving support or services.
Autism awareness and treatment have come so far in the last few decades. Still I realized that there’s so much more that needs to be done. And a major piece missing from the puzzle is how we can best serve the adult population.
In order to do this, we need to identify these individuals and determine their need for residential, vocational and health services. I’m so grateful that Autism Speaks is tackling this important issue.
Through the summer, I reviewed what researchers have published about the prevalence of autism in adults. As to be expected, perhaps, I found very little on the subject. I found one British study that assessed adult prevalence at a population level. It estimated that about 1 in 100 adults has an autism spectrum disorder.
Beyond that study, I mostly found reviews that focused on the need for adult prevalence studies. Since my goal was to recommend strategies to conduct such a study, I began looking at how researchers in other mental health fields have conducted such studies. I knew that depression and schizophrenia often co-occur among individuals affected by autism. So I focused on these two disorders.
In doing so, I reviewed the strengths and limitations of conducting a national versus a community- centered prevalence study. I also reviewed the current diagnostic tools available for autism and weighed the pros and cons of each questionnaire. Finally I recommended what I found to have the best success rates. In all, I found more than twenty journal articles to include in my review.
In conclusion, I think that a reliable study to estimate autism prevalence in adults can be done. I think the best approach is to borrow elements from successful studies of other mental-health conditions in adults. This should be done in combination with the best approaches for screening and diagnosing autism in adults.
I’m so happy I was able to contribute in some way to Autism Speaks’ mission. This was a fabulous experience and one that I hope will help lead me towards a career in this area of public health.
Martin: I’m a psychology and Spanish double major, and this past school year I studied abroad in Palma de Mallorca, Spain. Although I was sad to leave my new home, I was eager to intern at Autism Speaks through the Summer Internship Program at the College of Holy Cross.
I was particularly interested in this internship because it focuses on Hispanic and Latino communities. Being Hispanic and Latino myself, I wanted to learn more about my culture as it relates to autism. I hope to become a clinical psychologist and, so, I felt I should learn more.
My research project involved examining the barriers that Hispanic and Latino families face in recognizing autism and accessing related behavioral and medical services. Our goal was to identify health service strategies that are working in these communities and how we might improve them. We’ve also been trying to identify strategies that have evidence of being effective – but have not yet been widely implemented.
I found plenty of research describing the barriers that prevent minority children from being diagnosed and accessing care at an early age. But I found little in the way of solutions.
As I continued to read and collect information, I found that much more research and attention is needed. In particular, I identified five broad areas where more work is needed:
* Bilingualism: There are relatively few bilingual providers. In addition, there’s some evidence that being bilingual causes some young Hispanic children to perform poorly on language-focused ASD screening tests.
* Access to care/information: Relatively little autism-related information is available in Spanish. In addition, Latinos tend to live in areas with relatively few autism services.
* Cost of culturally and language-appropriate tools: Cost is a significant barrier to developing translated and culturally appropriate assessment tests, informational materials, etc. The need for translators can likewise make it costly to include Hispanic populations in autism research studies.
* Misconceptions: Many Latino parents blame themselves for their child’s autism or conclude that if there’s no cure, there’s no treatment. Some also fear that an autism diagnosis will prejudice people against their child and family.
* Diagnostic difficulties: Research shows that primary care physicians have trouble diagnosing Hispanics, but the reasons are not clear. Some evidence suggests that the problem may be a lack of cultural competence on the part of the doctor and difficulty in communicating concerns on the side of the parent. One thing is clear: Diagnosis becomes difficult without a stable trusting relationship between doctor and parents.
Through my research, I identified some approaches that work well within Latino and Hispanic communities. These include bilingual providers, materials and educational workshops for parents and caregivers. Financial assistance and payment options are also important.
Also helpful are so-called “health promoters,” individuals who educate community members on health issues such as autism and the transition to adulthood for teens with autism.
Based on my research, I made several recommendations in my final report. My main recommendation is to increase autism awareness and access to information in Hispanic and Latino communities by offering more information in Spanish, ideally in collaboration with primary care physicians in these communities.
I’ve learned so much about autism and what can be done to help those affected by the disorder. In particular, I hope this learning experience will help me contribute to a community that I will serve after college. I also hope that with my intern research project will help improve programs in these communities, perhaps through collaborate with Autism Speaks Early Access to Care and Global Autism Public Health initiatives. Working at Autism Speaks was a great experience that strengthened my desire to become a clinical psychologist with an appreciation for public health.