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.