Helping families affected by autism develop plans and access supports during times of disaster
By Autism Speaks science intern Caroline Eagan, an Autism Speaks science intern and a student at the College of the Holy Cross, in Worcester, Mass. Holy Cross is the alma mater of Autism Speaks co-founder Bob Wright.
This summer I had the privilege of being a research intern with the public health team at Autism Speaks. Over ten weeks I worked on two projects.
The first was a review of the published research literature on disaster preparedness planning and post-disaster recovery involving people with mental health challenges. This included but was not limited to autism.
The second was a related survey for families affected by autism in the New York City metropolitan area – assessing their experiences during Hurricane Sandy, in 2012.
The shared goal of both these projects is to improve how we help individuals with mental health conditions during and after disaster situations.
A scientific review of disaster preparedness
The scientific review involved my searching and compiling all published research on the subject in an effort to create recommendations for federal and local governments, as well as families and caregivers.
Unfortunately I found an overall lack of scientific research. Most of the papers I found are focused on disaster-induced mental health illnesses such as post-traumatic stress disorder and severe depression.
My research also suggested that the general public is largely unprepared when it comes to planning for natural disasters and successful evacuations. Relatively few households are prepared with evacuation plans or stocks of food, water and medicines.
A survey for Autism Speaks families
I developed post-disaster survey with the input of both the Autism Speaks public health team and its family services department. It explores the Hurricane Sandy experiences of Autism Speaks families in New York City tri-state area. Questions included how families dealt with the storm’s effects to their homes and communities, their children’s experiences and how long it took for their family to regain a sense of normalcy.
Again, the goal is to better understand disaster preparedness and develop a more comprehensive set of plans and guidelines that can help families in the future.
On returning to Holy Cross in September, I displayed a poster with my research findings at our college’s Internship Expo. Many of those who visited my poster were intrigued by how little attention governments and nonprofit organizations give to the important topic of emergency preparedness for families affected by developmental and mental health disabilities and disorders.
They wondered what families could do while waiting for more support and guidance. I explained that there are many things that families and caregivers can do at the household level to help. For example, they can make sure that family members with mental health conditions wear or carry medical IDs – particularly important in the event of an evacuation.
I want to thank Autism Speaks and its public health team for this opportunity and look forward to seeing more attention given to these important topics.