Showing posts with label trauma. Show all posts
Showing posts with label trauma. Show all posts
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INSAR 2019: Learning How to Prevent Suicide in Partnership with Autistic People and Their Allies

Yesterday we attended the INSAR 2019 panel Where Do We Go from Here? Learning How to Prevent Suicide in Partnership with Autistic People and Their Allies, led by Sarah Cassidy from Nottingham University who has been doing this for four years now. Here is what the speakers had to say. (Any errors or omissions are on us.)

More than 10K stakeholders worldwide have identified the top 10 priorities, with equal representation of #autistic people:
  1. What increased barriers do autistic people experience when seeking help which may put them at greater risk of dying by suicide?
  2. What are the risk and protective factors for suicide in autism across the lifespan?
  3. To what extent are autistic people not believed about the extent of their distress?
  4. How can we further understand suicide where mental health is not a factor across the lifespan?
  5. What are the best ways of identifying and assessing suicidal thoughts and suicidal behaviours, in autistic people, in research and clinical practice?
  6. How should interventions be adapted for autistic people and individual presentations?
  7. What is the experience of suicidality in autsitic people? Is this experience different than the general population?
  8. How do autistic people seek help when they are in a crisis?
  9. How well do existing models of understanding suicide apply to autistic people?
  10. What is the impact of poor sleep on suicide risk in autistic people and how can this be measured?

John Adams, an autistic person and artist on why lived experience is key:

“I don’t live with autism. I live with my wife and two cats. I do live with PTSD."

"We’re losing autistic people daily, and they’re often not remembered."

What barriers do autistic people face? Jon Adams says:
  • Attitudes towards me
  • Attitudes about me
  • The current mental health system
  • Being dismissed
  • No specific autistic pathway
What are the risk and protective factors for suicide in autism across the lifespan?

To what extent are autistic people blamed about the severity of their distress? This leads to trauma.

Adams has heard people say they can’t get treatment for PTSD until the trauma stops? WTF.

"Our narrative is often dismissed and misunderstood."

I want to stay as long as I can, but is leaving a pragmatic decision I need to take if I become infirm?

Autistic people should be leading these discussions, yet our experiences are often written over. The next generation deserves better.

“Mindfulness” is useless. And medication to numb him is not OK either. He wants action, but on #autistic people’s terms.

What is the experience of suicidality in autistic people?

Also: Mental health professionals often cause PTSD in autistic people, according to Jon Adam. Restricted and repetitive behavior SAVED him.

How do autistic people seek help when they are in a crisis?

They’re often called "treatment resistant." Adams says, maybe instead of blaming autistic people, consider how you’re treating them. Why wold they want to “stay” if you blame them so?

Why are the effects of sleep issues on suicidality in autistic people? Sleep problems are bad for everyone, and autistic people are human, so sleep problems in autistic people are bad.

Recommends others treat autistic people with consideration, acceptance, kindness, and genuine listening to unique experiences.  

How can we best identify and assess suicidal thoughts and suicidal behaviors in autistic people?

The validity of tools depends on context:

How can we determine if a tool developed for the general population is OK for autistic people? One factor missing is alexithymia, or not necessarily having access to the real-time experience of one’s own emotions.

We have to involve the autistic community in any tools or interventions for helping people with suicidality.
The Mental Health in Autism project is a participatory research project to deeply new assessment tools for autistic adults.

Theorize that #autistic people would have difficulty communicating their suicidal intent, so they tested the theory.

For threat of suicide attempts, autistic people are more likely than general population that they are having suicidal thoughts, but that this is associated with lifetime   and attempted suicide.

Autistic adults have difficulty attempting certain questions, e.g., questions about what they will do in the future. “I can’t say never, even though I’m not at risk now."

We need to adapt measures to better determine suicidality in the autistic community. We need to do a LOT more work.

Next steps: Measure has been adapted to unrecognizability! Which is good.

Next: Paul Lipkin from Kennedy Krieger, on screening for suicide risk in a pediatric autism population.

WHO say close to 800K people die from suicide every year.

For each death, there are 20 attempts.

Suicide is the 10th leading cause of death for all ages.

The pediatric community has not been on top of this.
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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.
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#AutisticWhileBlack: Diezel Braxton And Becoming Indistinguishable From One's Peers

Kerima Çevik
theautismwars.blogspot.com

The author's idea of what displaying autism positivity looks like
[Image: a Black woman over 50 with braided gray hair wearing
Neurodiversity 3.0 by ThinkGeek, a black T-shirt with a world globe
 design on the upper chest area in the shape of a human brain,
colored in physical map fashion i.e., water is colored light blue
 and land masses green, clouds white, looking to her left
 over bent wire-rimmed glasses in that way that mothers look at
 their children when an outrageous behavior has just ensued.]
There is an article in a paper called The Daily Net, about singer Toni Braxton's 16-year-old son Diezel working as a professional model for the past two years. The article refers to him as "formerly autistic." It goes on to say he has, "fortunately, moved past" autism and is now a celebrity himself.

Apparently, when her son was thirteen, Ms. Braxton was told he no longer met the criteria for autism. According to the article, she goes on to say:

“I am one of the lucky parents. Early diagnosis changes everything. I will tell you this. I will shout it from the rooftops. My son Diezel is off the spectrum. Off the spectrum being autistic.”

I beg to differ. There is no cure for autism.

Autism is a neurological divergence that doesn't just go away. One doesn't "move past" the wiring of a brain that has obvious neurological and physical differences. Calling current interventions for autism "treatments" is a misnomer that confuses parents. These interventions do not cure autism. They suppress visible signs of neurodivergent minds, forcing a type of behavioral code-switching that allows an autistic person to appear to navigate the world around them, such that they blend in with nonautistic peers.

This is not a cure. The price paid when forced training in compliance and the suppression of coping mechanisms is pursued—instead of investigating and addressing the root causes of coping mechanisms and misunderstood behaviors—may later manifest later in "formerly autistic" adults as mental health challenges, and PTSD.

A parental demand that Diezel should not display any sign that he is autistic has been issued for public consumption, from a mother who has no understanding of being autistic—except to view her son's brain as an enemy he must fight, and defeat. Is telling your adult son to hate his own brain, and how it works, a good thing? This sounds more like the very definition of how internalized ableism happens.

Toni Braxton would not tell her son that his melanin and hair are abhorrent things that he must combat and chemically suppress so he can be "indistinguishable from his white peers." I wonder why its okay to tell him to hate the nature of his own neurology? Most of the innovations, discoveries, and creative artistry in this world came from neurodivergent minds. Nina Simone was bipolar, as were many other great musicians. Many creative people are autistic. Presumption of a cure when the symptoms of a divergent mind are no longer apparent deprives neurodivergent individuals of their future rights to critical mental health, and other supports they may need to access going forward.

It is truly harmful to hold up an autistic teen and call him "formerly" autistic. If he has trauma, anxiety, or any future issues, his own mother's insistence that his lifelong disability is gone might lead him to hesitate in seeking help, to feel inadequate, to feel unable to request critical accommodations and supports that might significantly improve the quality of his life—or save it.

Diezel is the son of a celebrity, so his life is at this moment might appear significantly better than that of his African American peers. But this path of using an incorrect term for his becoming indistinguishable from his peers is dangerous to our community, and wrong.

Toni Braxton's type of rhetoric, along with parading her teen son around as inspiration porn, could have other parents exerting increased pressure on their own offspring to be "formerly autistic"—and if those young people have a degree of disability that makes becoming indistinguishable from their peers unrealistic, it could irrevocably harm them.

The author's idea of an autism positive autistic male model. 
With permission, and yes, we have matching Neurodiversity 3.0 
t-shirts. He is wearing his, bought deliberately 
large because the collar would disturb him otherwise.
 The photo matters because it defies professional
assessments of his degree of disability.
 He is facing me while I'm photographing him,
 he's looking right at me, and he's sending a
kiss in my direction. 
[Image of a multiracial teen with curly hair
at a table in a black t-shirt with a
drawing of a human brain
colored to look like a physical map of the world
 with the word Neurodiversity in all caps
 and green lettering beneath it.
A refrigerator can be seen in the background as
can parts of a sitting room behind him. © Kerima Cevik]
The crushing element of structural ableism, which breeds internalized ableism when nurtured by this type of parental gaslighting, may have emotional consequences at a later time in Diezel's life, and that truly concerns me. His mother clearly hates the autism label, and views autism in the same way she views the Lupus diagnosis she carries. I wonder how this has informed his identity and his sense of self-worth? I wonder if Diezel has been assessed for conditions like prosopagnosia, synesthesia, or auditory processing disorders? Has he been tested for Ehlers-Danlos Syndrome (EDS)? These common autism traits and co-occurring conditions are rarely tested for, or addressed, in African American autistic populations.

As African Americans, we are forced to code switch, to suppress African American Vernacular English (AAVE) and cultural differences that make us who we are—unless those differences in language and manner have already been culturally appropriated. Ebonics is still deliberately treated as something less than acceptable. It is still a major issue when natural hair is worn to school, or work. It is still a risk when AAVE is used in traditional work settings, or public spaces. The suppression of Black identity that necessitates code-switching to gain employment perpetuates structural racism. This type of racism has been exposed, deconstructed, and understood to be harmful. We now insist on being ourselves, and this has direct positive effects on the acceptance of our own Black identities. This reduces internalized racism and has created an entirely new generation of young Black activists who are able to continue to fight for the basic human rights we deserve as African Americans.

Toni Braxton's celebrity, and her wrongheaded understanding of autism, have been used for years to muddle the African American community's attitudes about autism. She allowed herself to be used to present autistic brains as things to be eradicated, and this is unacceptable. Her attitude sets up a dangerous mentality that is unsustainable, as you cannot eradicate your child's brain.

Braxton has been vocal and public in her portrayal of autism as a disease to be suppressed and defeated, rather than as a lifelong disability, and this has had a devastating impact on how our people view their own autistic children. We have a disproportionate number of autistic high school graduates who could succeed in college with the understanding that supports exist to help them navigate university life on every college campus. Our community views autism as a mark of shame, an embarrassment, and celebrity parents like Ms. Braxton continue to be instrumental in perpetuating these attitudes of ableism that hold multitudes of autistic youth back, when her intention appears to give our people some sort of hope and inspiration.

It is time to make the harm Braxton is causing clear, and speak up for the sake of so many autistic young adults and teens who live with self-loathing in part because of celebrity parents who inadvertently gaslight them with the attitudes that the things that make a young person autistic must be code switched off, suppressed—and who they really are must be either hidden away, or eradicated.

The average life expectancy of an autistic person is 36. I would argue that what makes navigating this world as an autistic person so risky is not just being autistic; it is the way every layer of society bakes ableism into the structure of autistic lives, such that from childhood to adolescence it becomes internalized, and increases risks of harm. We parents have to stop contributing to this cycle of loathing and alienation with misinformation, myths, and false narratives. It's time we understand the impact that our words and actions have on our children, and on the entire autism community.

I can't keep Toni Braxton from misinforming the public about her opinions on autism or her son. I can't keep her from continuing to speak about him without him, although he is now a celebrity in his own right and supposedly capable of speaking for himself. But what I can do is point out what is wrong about her behavior, and the damage it is doing. What we can all do is recognize what Braxton is doing, and not pave the road to autism hell by allowing ourselves to be led by celebrity or personalities. We need to seek peer-reviewed factual knowledge of what autism is, and understand how we can facilitate a better life for our children, by arming them with accurate, empowering facts.
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