Partnering with the Autism Community on Inclusive Emergency Preparedness

Some answers have been edited for clarity.

ADRIANNA EVANS:
My name is Annie Evans, and I'm the director of preparedness and disability integration at ASTHO. Today, I'm interviewing Susan Tharpe to learn more about partnering with the Autism community for disability integration and emergency preparedness. Susan, would you like to introduce yourself?

SUSAN THARPE:
My name is Susan Tharpe. I am the disability and preparedness specialist for the beautiful state of Georgia. I work with the Department of Public Health, and my position is funded through ASTHO. I'm working with the Emergency and Preparedness Department under the Public Health Emergency Preparedness (PHEP) Cooperative Agreement and the Hospital Preparedness Program (HPP). I am very grateful to be here.

EVANS:
Thanks for being here. Let’s get into a few questions. Why is it important to form partnerships with the Autism community in emergency preparedness planning?

THARPE:
The number of people who identify as being on the spectrum is a very large group, and what a lot of people don't know is that each person is different. Autism affects each person differently. When you're talking about sheltering and evacuating people during an emergency, it’s important to anticipate or plan to address the range of needs. So, it's important to have the autism perspective when it comes to emergency planning.

EVANS:
What are the barriers people living with disabilities, specifically those with autism, face when it comes to inclusivity in emergency preparedness?

THARPE:
When it comes to emergency planning for shelters and things of that nature, you have to remember different foods because a lot of times people with autism have different types of diets.

Also, think about how to make information and appropriate mental health as well as behavioral health services accessible in emergency response efforts. One of the things that we know is that any change in the regular routine is difficult. And so, when you're thinking about sheltering and evacuating or emergency plans for any type of disaster, those services are things to factor in. It’s very important to have those be included in your planning and your emergency preparedness.

EVANS:
Why is it important to form partnerships with the Autism community in emergency preparedness planning?

THARPE:
For a lot of disability communities, there's a trust issue. And for those of us who really don't have a disability, it's hard for us to understand. But basically, people form relationships with people that they know have their best interests at heart. And if you're someone who is trying to forge a relationship and you have no knowledge of the challenges and the barriers around disabilities, it's very hard to take you seriously.

So, for people in the Autism community, it's very important to have partnerships because it’s a very strong group. They are very involved in advocating for their needs and they're very knowledgeable about available services. It's very important to make that connection and get involved in the community. Go to some of the events. Participate in some of the conversations. Let them know that you truly are invested and that you truly are interested in the community.

EVANS:
How has Georgia partnered with the Autism community to promote disability inclusion in emergency preparedness?

THARPE:
Georgia has an emergency coalition that has brought a lot of the disability organizations to the forefront. The emergency coalition is working to include people with disabilities in the planning, exercise, and training of emergencies. And what Georgia has done is bring the Autism community along. Since I am a trusted member within the community, I've been able to reach out to the really big groups and bring more partners to the table. Some groups focused on autism are more research-based, and some are more consumer-based. It's very important when you're talking about a disability to bring all the different perspectives to the table.

Georgia has opened their arms and they are allowing me to invite whoever I want, so I'm reaching out to many groups, including developmental and disability organizations, to bring as many people to the table as possible so we can have a well-rounded discussion.

EVANS:
What challenges have stakeholders faced in building up the partnerships between Georgia and the Autism community? And how were those challenges addressed?

THARPE:
Right now, the challenge is for stakeholders to build trust with the community and general knowledge of what the disability is. I'm sure a lot of people know, but autism is just a general diagnosis. There are several other diagnoses a person can have. For example, my son has OCD, Tourette's, and intellectual delays. The challenge is people do not fully understand what the diagnosis is and how it looks different across different people.

EVANS:
What has Georgia been able to achieve when stronger partnerships were in place with the Autism community?

THARPE:
Georgia's learning that the disability community is open, particularly the Autism community. They want to be involved. All the organizations that I've spoken with really have expressed an interest in being involved with the Department of Public Health. I am working to put Georgia in a position where those people can come to the table. They're willing to share and educate others about autism—educating is the important thing here. No one really understands unless you educate them. And so, they're willing to do that.

EVANS:
Are there special considerations for engaging the Autism community in emergency preparedness?

THARPE:
They're very educated. They're very involved. When you're talking about including people with autism in emergency preparedness, one of the key things you need to do is invite the caregivers and parents as well. They bring a unique perspective. They can offer you a lot of information and a lot of education.

EVANS:
What are your recommendations for other jurisdictions looking to initiate partnerships with the Autism community?

THARPE:
It's very important to understand the diagnosis and how it manifests in each person. Invite members from the community to the table and keep an open mind. Also, there are several centers for independent living that offer simulations of what it's like to have autism. That is something that’s very important because there are so many levels to that disability, and it's very important for people to understand that.

EVANS:
Is there anything else that you would like to comment on or say about building partnerships in the Autism community regarding emergency preparedness?

THARPE:
It's critical for there to be a representative from the Autism community when planning for a response to an emergency or disaster. The community has many needs that should be considered and incorporated into an emergency plan, and planning is key for people with autism. Change is something that is very difficult for this community. For many people, routine is just a critical part of their day. And so, if you can incorporate those response plans into people's lives, it'll be a little bit easier when and if a disaster happens. But other than that, I thank you guys so much for having me here today.

EVANS:
Thanks for joining us to learn more about partnerships with the Autism community. And thank you, Susan, for sharing today.