Thread by @thinkingautism

Now: “#Autism and Related Disorders in the Context of Humanitarian Emergencies” #INSAR2019

First up: Doctors without Borders developmental pediatrician, who worked in conflict zones. Can we use remote consultations to increase support disparities?
#INSAR2019

We will be hearing from group of professionals with experience with children with developmental disabilities and humanitarian emergencies. Trauma during conflict means diagnoses/traits can be muddies. #INSAR2019

There’s an estimated 535 million children, nearly 1 in 4, who live in countries affected by conflict of disaster. And we don’t know about the rates of disorders in those countires. #INSAR2019

Ultimate aim of SIG is to collaborate between researchers and stakeholders in the humanitarian areas to promote research important for the care of and support of children with autism & related disorders. #INSAR2019

Daniel Martinez from MSF started an org for areas in post-conflict conditions called everywhereschools.org, to provide support once acute phase of conflict has resolved.

#INSAR2019

MSF struggles with how to speak out during conflict/post-conflict without making things worse. Specific challenges include safety and complex needs.

#INSAR2019

Martinez wanted to emphasize that while the data is not good, conflict areas have mortality rates that have not kept pace with modern improvements. #INSAR2019

Now: Children in war, special considerations:

Vulnerable population, loss of opportunity, trauma, health (malnutrition), migration/unaccompanied minors. maltreatment, sexual violence, child solders, & war toxicity/environmental degradation & long-term effects.

#INSAR2019

All of these previous factors already affect typically developing children. But what about children with developmental disabilities? We don’t have a lot of data to show what happens to these kids, or on prevalence.

#INSAR2019

At least 30% of refugees in Syria and Lebanon have a specific need. #INSAR2019

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.

#INSAR2019

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.

#INSAR2019

IASC has Guidelines on mental health and psychosocial support in emergency settings. Frameworks informing the guidelines include: nurturing-care.org from the WHO. Providing security, safety, good health, nutrition, and more. #INSAR2019

Also: “Building Back Better” guidelines: We need to ensure we build new services after the end of an emergency. Opportunity to create new services for kids with DDs, sometimes ones that didn’t exist before the crisis. #INSAR2019

Now Andria Spyridou, International Medical Corps mission in Syria and the Middle East. #INSAR2019

Challenges in Syria related to the conflict and displacement: Kids out of school & deprived of support, lack of professionals trained in child development & DDs, experience of violence an adversities can deteriorate development for all kids but especially 4 kids w/DDS #INSAR2019

WHO Caregiver Skills Training has guidelines for caregiver-mediated intervention for kids 2-4 yrs old. #INSAR2019

IMC (international medical corps) has regional cultural/contenual adaptation process that is modified for humanitarian settings. Includes video recording of kids and remote consultations.

#INSAR2019

(Please excuse typos. Am v. dysgulated and so damn lots of typos. Hopefully people read typo-ese) #INSAR2019

Impact of the CST: The result indication that overall improvement in a ll the areas the caregivers were concerned about. Especially with displacement people cannot guarantee involvement in long-term program. #INSAR2019

Material needs to be culturally adapted and fit the population addressed. Training and supervision of the facilitators is key to success of remote supports & evals for kids with DDS in conflict zones and humanitarian crises. #INSAR2019

Kerim Munir from Boston Children’s Hospital became involved in this work after 1990s earthquakes in Turkey, especially for mental health supports during and after humanitarian emergencies. #INSAR2019

In the US, the NIH is committed to building resilience after cries. Their program can be found at dr2.nlm.nih.gov

Says need to engage autism communities and maintain communication (e.g., need to take ownership as an international community)
#INSAR2019

Preparedness for crises is relatively low. The impact of crises on #autistic people is underestimated.

We need more research in to how emergencies affect #autsitic people, including resilience. But we don’t have/need to develop the infrastructure for IRL supports.

#INSAR2019

Chowchilla: study showed that kids w/DDs who experience trauma (school bus kidnapping in this case) ALL still were affected years later, in terms of loss of adaptive functions. #INSAR2019

BRANCH Consortium (Toronto) is focused on research involving reproductive, maternal, newborn, children and adolescent health and nutrition in conflict settings. #INSAR2019

Summary: Kids with Autism and related disorders in the context of humanitarian emergencies:

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.

What to we need to do?

#INSAR2019

Summary cont’d: 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.

#INSAR2019

Summary cont’d

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

#INSAR2019

There is no point in translating #autism and DD materials into other languages without making them culturally grounded and informed. #INSAR2019

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.

#INSAR2019

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.

#INSAR2019

Research: Do we need different approaches in responding to conflict-based crises and natural disasters? Are there opportunities for better preparation in the former?

#INSAR2019

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.

#INSAR2019

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? #INSAR2019

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? #INSAR2019

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.

#INSAR2019

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

#INSAR2019

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.

#INSAR2019

Technology can help with training, communication, instruction, supervision, implementation.
#INSAR2019

@threadreaderapp please unroll, so grateful, thank you.