Thread by @thinkingautism

Now: Where Do We Go from Here? Learning How to Prevent Suicide in Partnership with Autistic People and Their Allies, led by @Sarah_NottsUni, who has been doing this for four years now. #INSAR2019

insar.confex.com/insar/2019/web…

@Sarah_NottsUni More than 10K stakeholders worldwide have identified the top 10 priorities, with equal representation of #autistic people. #suicidality #INSAR2019

@Sarah_NottsUni Now: @soundcube, #actuallyAutistic 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."

#suicidality #INSAR2019

@Sarah_NottsUni @soundcube @soundcube: "We’re losing autistic people daily, and they’re often not remembered."

#suicidality #INSAR2019

@Sarah_NottsUni @soundcube What barriers do autistic people face? @soundcube says:

-Attitudes towards me
-Attitdues about me
-The current mental health system
-Being dismissed
-No specific autistic pathway

#suicidality #INSAR2019

@Sarah_NottsUni @soundcube @soundcube: 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.

#suicidality #INSAR2019

@Sarah_NottsUni @soundcube @soundcube: Has heard people say they can’t get treatment for PTSD until the trauma stops? WTF.

Our narrative is often dismissed and misunderstood.

#suicidality #INSAR2019

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

#suicidality #INSAR2019

@Sarah_NottsUni @soundcube @soundcube: Autistic people should be leading these discussions, and our experiences are often written over. The next generation deserves better.

#suicidality #INSAR2019

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

#suicidality #INSAR2019

@Sarah_NottsUni @soundcube What is the experience of #suicidality in #autistic people?

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

#INSAR2019

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

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

#suicidality #INSAR2019

@Sarah_NottsUni @soundcube 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.

#INSAR2019

@Sarah_NottsUni @soundcube @soundcube recommends others treat autistic people with consderation, acceptance, kindness, and genuine listening to unique experiences. #suicidality #INSAR2019

@Sarah_NottsUni @soundcube @Sarah_NottsUni: How can we best identify and assess suicidal thoughts and sicidal behaviors in autistic people?

#suicidality #INSAR2019

@Sarah_NottsUni @soundcube @Sarah_NottsUni: the validity of tools depends on context:

#suicidality #INSAR2019

@Sarah_NottsUni @soundcube 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.

#suicidality #INSAR2019

@Sarah_NottsUni @soundcube We have to involve the autistic community in any tools or interventions for helping people with #suicidality.

#INSAR2019

@Sarah_NottsUni @soundcube The Mental Health in Autism project is a participatory research project to deeply new assessment tools for autistic adults.

#suicidality #INSAR2019

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

#INSAR2019

@Sarah_NottsUni 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 #suicidality and attempted suicide.

#INSAR2019

@Sarah_NottsUni 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."

#suicidality

#INSAR2019

@Sarah_NottsUni 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.

#INSAR2019

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

#INSAR2019

@Sarah_NottsUni 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.

#INSAR2019

@Sarah_NottsUni @threadreaderapp I would be grateful for an unroll please. Thank you.