Friday, May 3, 2019

INSAR 2019: #Autism and Related Disorders in the Context of Humanitarian Emergencies

Shannon Rosa
Senior Editor

[Note: This report is based on @thinkingautism live-tweeted coverage, and as such may contain errors or omissions.]

Report from the INSAR 2019 Special Interest Group (SIG) Autism and Related Disorders in the Context of Humanitarian Emergencies.

SIG summary: "UN figures estimate 48 million children are impacted by humanitarian emergencies, including armed conflict and natural disasters. Within this population, children with autism and developmental disorders are extremely vulnerable to poor short and long term outcomes. There is increased awareness of the vulnerability of these children but limited research based knowledge on how to best address their needs. We aim to launch a platform for communication and collaboration between autism researchers and key stake holders in the humanitarian setting to address this gap."

First up was Doctors without Borders and SIG leader Ramzi Nasir, a developmental pediatrician who worked in conflict zones. He asked: Can we use remote consultations to increase support disparities?

We will be hearing from group of professionals with experience with children with developmental disabilities (DDs) and humanitarian emergencies. One effect of trauma during conflict means diagnoses/traits can be muddied, because of the overlap between developmental disabilities and the symptoms of trauma.

There are an estimated 535 million children, nearly 1 in 4 globally, who live in countries affected by conflicts and disasters. And we don’t know enough about the rates of developmental disorders in those countries.

The ultimate aim of this SIG is to collaborate between researchers, professionals, and stakeholders of the affected areas to promote research important for the care of and support of children with autism & related disorders.

Daniel Martinez from MSF (Doctors Without Borders) started an org for areas in post-conflict conditions called everywhereschools.org, to provide support once acute phase of conflict has resolved. MSF struggles with how to speak out during conflict/post-conflict without making things worse. Specific challenges include safety and complex needs. Martinez wanted to emphasize that while the data is not good, conflict areas have mortality rates that have not kept pace with modern improvements—some mortality rates are the same as they were decades ago, while those rates in other countries/regions are improving by contrast.

When we talk about what happens to children during wars, there are special considerations, and we need more research on what the long-term effects of these factors are:
  • Vulnerable population (though in some cases resilience can be enhanced)
  • Loss of opportunity (school/nurturing/protective adults) 
  • Trauma
  • Health (disease/malnutrition)
  • Migration/unaccompanied minors
  • Maltreatment
  • Sexual violence
  • Child soldiers
  • War toxicity/environmental degradation
Ramzi Nasir, a Palestinian man with short light hair  speaking next to a conference display screen
Ramzi Nasir presenting at the SIG
[image: Ramzi Nasir, a Palestinian man with short light hair
speaking next to a conference display screen.]
All of these previous factors already affect typically developing children. But what about children with developmental disabilities in conflict or humanitarian emergency regions? We don’t have a lot of data to show what happens to these kids, or on prevalence. But when we do have data, it tends to be sobering: At least 30% of refugees in Syria and Lebanon have a specific need.

Now: Laura Pacione with WHO/Dept of mental health and substance abuse; on broad overview of humanitarian response, to coordinate and ensure response is coherent and appropriate.

Humanitarian emergencies require a huge amount of coordinated collaboration and cooperation, to ensure kids get care during those crises. Lots of NGOs and government agencies too.

World Health Organization's Interagency Standing Committee (IASC) has Guidelines on mental health and psychosocial support in emergency settings. Frameworks informing the guidelines include WHO's Nuturing Care for Early Childhood Development nurturing-care.org, on providing security, safety, good health, nutrition, and more.

Also of note, the Canadian Government's “Building Back Better” guidelines: We need to ensure we build new services after the end of an emergency. There can be opportunities to create new services for kids with DDs, sometimes ones that didn’t exist before the crisis.

Now Andria Spyridou, of the International Medical Corps (IMC) mission in Syria and the Middle East. Challenges in Syria related to the conflict and displacement: Kids out of school & deprived of support, lack of professionals trained in child development and developmental disabilities, experience of violence an adversities can deteriorate development for all kids but especially for kids w/DDS
WHO Caregiver Skills Training has guidelines for caregiver-mediated intervention for kids with developmental disabilities who are 2-4 yrs old.

IMC also has regional cultural/contextual adaptation process that is modified for humanitarian settings, as material needs to fit the population addressed. Training and supervision of the facilitators is key to success of remote supports and evaluations for kids with developmental disabilities in conflict zones and humanitarian crises, which is why their training includes video recording of kids and remote consultations. Especially important as with displacement people cannot guarantee involvement in long-term programs.

Kerim Munir from Boston Children’s Hospital became involved in this type of work after 1990s earthquakes in Turkey, especially for mental health supports during and after humanitarian emergencies. In the US, the NIH Disaster Research Response is committed to building resilience after crises.

Autism-specific concerns:

  • We need to engage autism communities and maintain communication (e.g., need to take ownership as an international community).
  • Preparedness for crises is relatively low. The impact of crises on autistic people is underestimated. 
  • We need more research in to how emergencies affect autistic people, including resilience. But we don’t have/need to develop the infrastructure for real world supports. 
  • Youth/adolescents with DDs are highly vulnerable group, and can get lost to follow-up, BC most UN etc. goals are focused on young kids.

We know from (limited) research that kids who experience trauma (Chowchilla school bus kidnapping in this case) can all still be affected years later, in terms of loss of adaptive functions.

Summary: For us to actually get more involved in this kind of work and find solutions, we need to know what practical applications are, how we can ACTUALLY help.

To better support/aid people with autism and DDs in humanitarian emergencies, we need to identify priority gaps and action plans in the areas of:
  • Research
  • Clinical
  • Training
  • Advocacy
  • Policy
Research: Do we need different approaches in responding to conflict-based crises and natural disasters? Are there opportunities for better preparation in the former?

During the acute phases of crises, research may be difficult, but the following phase may provide more opportunities for research to better understand of impacts and outcomes, and how this differs by countries—including effects of stigma & discrimination.

How do the experiences between refugees and residents differ during humanitarian crises? What are the differences in access to care and how can we better ensure that access for both groups?

One of the missing data issues is that there are people doing work, but collaboration, e.g., in NGOs, can be siloed. How can we coordinate and synthesize this date in a useful way? For instance as is done with sustainable development goals?

Clinical: Evidence-based practices are important, but cultural factors including stigma can get in the way of accessing services based on that evidence. Identifying local partners (& training them) who can provide long-term supports is crucial.

We have to be aware of local professionals, what their expertise is, and how they can support local people with autism & DDs during humanitarian emergencies.

Approaches to supporting children with autism & DDs in crises needs to be holistic, in terms of supporting entire family too.

Training: Priority gaps: how do we tangibly building capacity, knowledge, and skills?

Need coordination in different levels of gov’t. Need cultural adaptation and tools.

Need database of communication between orgs, to address gaps & prevent duplication of work.

Technology can help with training, communication, instruction, supervision, implementation.

Advocacy: There is no point in translating autism and DD materials into other languages without making them culturally grounded and informed.

In crises & in specific cultures, stigma about autism & DDs can prevent parents & caregivers from seeking help. So sometimes approach to support needs to be needs & capacity-based rather than labels-based. Then group-based approaches can encourage parent solidarity.