Saturday, June 9, 2018

INSAR 2018: Autism and Suicidality Special Interest Group (SIG)

Sarah Cassidy's INSAR 2018 SIG on autism and suicidality brought ~60 autistic people and autism researchers and professionals to discuss research on, and factors underlying and mitigating, suicidality in autistic people—as well as next steps for researchers.

The statements and images below are from our original Twitter Moment compilation/report on this SIG. We then heard back that Twitter feeds can be difficult to parse and access for some, so we've created this version as well, edited for readability. Uncredited statements are from the Thinking Person's Guide to Autism Twitter feed.

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Jon Spiers:
Morning session on suicide and autism starting now at INSAR 2018 - a top priority for Autistica and Mental Health in Autism.
At INSAR 2014, Sarah Cassidy was the only poster on suicidality. Now there is an entire INSAR 2018 track on autism, suicidality, and bullying.

At IMFAR (INSAR) 2016, the SIG goal was to identify priority topic areas. At the 2017, the SIG identified research questions. In 2017, at a summit in the UK, Dr. Cassidy worked on developed theses.

Autism and suicidality overview: Some aspects:

  • Ethics: Does talking about suicide increase risk? 
  • Risk/protective factors: Gender, communication, belonging, lack of joy, disclosing, diagnosis, help seeking, sleep difficulties.
  • Treatment/prevention: "we just don’t know what works"
Advances in research on autism and suicide.
Photo by Sara Luterman
[image: Side. Blue bar at top with white text reading" Progress so far"
The rest of the slide has a white background with red text reading,
"•1 INSAR poster presentation on suicidality in autism in 2014
•INSAR 2018 oral presentations strand "Suicide and bullying and
number of additional posters
•Presentations across numbers of labs
•Increased sample sizes, comparison groups included, looking at the
*why* question"]
Now: Abigail Thompson from Autistica, the UK’s autism research charity, which aims to help autistic people live long healthy happy lives which makes me cry because Autism Speaks and Autism Society: why aren’t your missions this clear and simple?

Sara Luterman:
I know I gush about @AutisticaUK a lot, but I’m going to keep gushing about them as long as they keep leading the world in funding research that actually makes a difference in my life.
Photo by Sara Luterman
[image: Projected slide showing a group of human faces in profile, 
facing right, in white, blue, and dark orange. Orange text on the left reads,
 "Long, happy, healthy lives for all autistic people." Text at the bottom of the slide 
reads, "Autistica" and "Dr. Abigail Thompson"]
Factors: Lack of belonging: “If you don’t belong, you’re gone”
  • What does belonging mean to #autistic people, and how can it be captured?
Sleep difficulties: Important and under-recognized/diagnosed in autism. Also important to define and measure: night awakenings, nightmares?

Development of appropriate assessment tools: They have been developed for the general population, but not yet validated for #autistic people. General questions may not be clear or relevant for autistic ppl.

Social communication: Over/under reporting of suicidality?
  • Literal interpretation of questions: “We mean what we say.” 
  • Negative experiences could lead to masking: “We learn to say we are fine” 
  • Need to consider lived experience in assessment.
Help seeking. Increased barrier for support/treatment.
  • Do negative experiences impact willingness to seek help (e.g., not feeling believed?)
One approach Autistica is taking on underfunded but crucial autism areas: Writing accessible reports, and taking them to the agencies who could possibly fund them (in the US and UK).

Disclosing diagnosis: “You want the right people to know” Exploring experiences of disclosing, and how and when this may impact suicidality.

Risk/protective factors: What keeps people here? …special interests; we need to make sure we aren’t “pathologizing passion”; positive social interaction where desired in the way it is desired.

Conceptualization: Phenomenology of suicidality in autism: Quality of life more important than mental health? What does a “good life” look like?

In every country in the world, there are more undiagnosed adults than diagnosed. This is a fact. This is a factor. This is a risk.

Could religion or other value systems that discourage suicide be a protective factor? Research indicates this is possible.

The strength of the autistic community is what keeps many autistic people going, and mitigates feeling like one doesn’t belong— especially when there’s very little support available.

Medication: “If our brains are wired differently, then medication must have a different effect upon us.” We need to explore the effectiveness & side effects of meds in autism. How do meds interact with autistic traits? Are antidepressants a risk?

Dr. Eileen Crehan:
And even once we are aware of different effects, how can we train more psychiatrists in this area of specialty? Access to medical providers with knowledge of ASD is limited!
Autistica is working with organizations to find out what kinds of mental health services are most helpful. Many autistic people find phones and going to ER/emergency services aversive. Would a text-based chat service be more useful?

We think autistic people are more likely to have a short span of time between considering suicide and acting on it (impulse control?). They also tend to choose more final methods, but research is forthcoming. Limited access to methods may help.

Gender differences: Autistic females are more at risk of suicide, compared to general population. Why? Masking? Late diagnosis? Differences in communication, suicide planning, methods?

Many autistic people are able to realize that being in an extremely aversive in-patient/hospitalized situation is better than being dead — but those shouldn’t be the only options. Need more humanistic, autism-friendly options for those in crisis.

Suicidality can be due to needing to "release pressure.” Especially when aware mental health services don’t recognize autistic symptoms/experience. 

Some autistic people find meds can help with compulsive thoughts that can build to suicidal impulses.

Lack of joy: “How do we find joy in a world that doesn’t understand us?” 
  • Autistic people discussed that stressors associated with being autistic can make life feel joyless. Does this increase suicidality risk?

Jon Adams:
Talking suicide & autism 
but maybe I don’t understand as they’re only including ‘attempts’ 
What about those of us that have ideation ‘all the time’ due to co-morbid conditions such as PTSD or are so isolated they ‘don’t feel they belong’ 
#INSAR2018 #AutisticCultureShift
Some commonly prescribed medications for co-occurring conditions (or medication prescribed for “autism”) have known risks not just for elevating suicidal ideation, but possibly causing other physical symptoms (tics etc.) that increase distress.

Need to be cautious about making autistic people in mental health crisis join group “mindfulness” efforts that are aversive (e.g., visualizing exercises may be NOT GOOD for synesthetes), increase feeling of not belonging, then blamed for “failing."

Maxfield Sparrow:
I am on the aphantasia spectrum. Visualization exercises are really weird experiences for me.
How effective are current therapies for suicidality in #autistic people? Can these therapies be adapted?

Response and prevention: Important to identify and respond to potentially stressful life events (leaving/changing schools).

Jon Adams:
This is great 
a small ‘table’ of #ActuallyAutistic people talking feeding in ‘lived experiences’ informing with researchers sat with us 2 develop projects = studies = policies with our “voice” at the core 
@slooterman @shannonrosa @AutisticaUK @YesWeJon #SuicideAutism #INSAR2018
Shannon Rosa:
Would like to know more about suicidality in autistic ppl w/communication disabilities (non-speaking) or intellectual disability/learning disabilities. I wonder, hard, how many written off as “aggressive” or self-injurious are actually suicidal.  
And everything that has to do with preventing or containing or medicating these behaviors, rather than understanding/mitigating distress factors is making people with profiles similar to my son’s even more miserable. 
This keeps me up at night.
Sara Luterman:
There is no autism-specific drug research on preventing suicidality. As long as the method being looked at isn’t a chemical straitjacket, I’m all for pharmaceutical research on this topic. 
Shannon Rosa:
Yes definitely. I am opposed to chemical straightjackets and for understanding autistic mindsets/motivations; the latter includes appropriate meds, as needed.

Sara Luterman:
Protip: 24/7 invasive tracking of everything I do isn’t going to make me less suicidal. I suspect this is true for most autistic people, of all ages. Treat us like we’re human, because we are.
Shona Dav:
It’s true that a mental health crisis might prompt a diagnosis. 
But also masking prevents diagnosis and masking increases mental health problems so that might change the data in the opposite direction. 
It is hard to get any reliable autism stats cos we are under identified in my view.
Autistic kids (and adults) have a high rate of co-occuring conditions like OCD, anxiety, depression, etc. that can interfere with quality of life and happiness. If they are in distress and medications can help, they should have access to those meds.

James Cusack:
  1. There is a need for a strategic coordination network for research area in order to enable high quality research and rapid progress. 
  2. To drive suicidality research forward we need a clear strategy bringing together research in to i) risk/protective factors, ii) intervention/assessment and iii) policy and practice.
Handout from the INSAR 2018 Autism and Suicidality SIG: Suicidality factors flow chart:



[Image desciption for Autism and Suicidality factors flow chart.

Black text in titled boxes on a white background, in landscape orientation. Boxes’s text content from left-to-right, top to bottom:


Lack of belonging:
“If you don’t belong, you’re gone”
What does belonging mean to autistic people and how can it be captured?

Help Seeking
Increased barriers for support/treatment?
Do negative experiences impact willingness to seek help (i.e., not being believed)

Disclosing diagnosis
“You want the right people to know”
Explore -ve/+ve (negative/positive) experiences of disclosing autism diagnosis
How and when may this impact suicidality

Gender differences
Autistic females are moe at risk of suicide than males - opposite to general population, why?
•”Masking”
•Late diagnosis?
•Differences in communication, suicide planning, methods?

Sleep difficulties
Risk marker in Gen Pop - impacts capacity to cope
Important and under-recognised/diagnosed in autism
Important to define and measure: night awakenings, nightmares?

Risk/Protective Factors
“What keeps people here? …special interests; we need to make sure we are not “pathologizing passion”; positive social interaction where desired in the way it is desired.”

Lack of Joy
“How do we find joy in a world that doesn’t understand us?”
Autistic People discussed that stressors associated with being autistic can make life feel joyless. Does this increase risk of suicidality?

Development of Appropriate Assessment Tools
Suicidality assessment tools have been developed for the general population, and not yet validated for autistic people - questions may not be clear or relevant for this group.

Conceptualization
Phenomenology of suicidality in autism
Risk Protective Factors
Exploring and adoption existing models of suicidality
Quality of Life more important than mental health? What does a “good life” look like.

Treatment Approaches
“We don’t know what works”

Social Communication
Over/under reporting of suicidality?
Literal Interpretations of questions? “We mean what we say”
Negative experiences could lead to masking: “We learn to say we are fine”
Need to consider lived experience of autistic people in suicidality assessment (e.g., lack of belonging)

Psychosocial Interventions
Few studies of adapted interventions for autistic adults - added complexity of suicidality.
What people need depends on the profile they present with (e.g., virtual reality to treat anxiety in autism).
How effective are current therapies for suicidality in autistic people? Can these therapies be adapted (e.g. DBT)?
In terms of response and prevention, important to identify and respond to potentially stressful life events such as transition (e.g., leaving school, going to University)
Online support is a potential opportunity
Tiered support? Or does this close doors?

Medication
“If our brains are wired differently then medication must have a different effect upon us”
Explore effectiveness and side effects of medication in autism
Is anti-depressant medication more likely to increase suicidality in autism than in the general population?
How does medication interact with autism characteristics?

(End text box descriptions and contents)

Arrows lead from “Conceptualization” to “Risk/Protective Factors” “Development of Appropriate Assessment Tools” and ”Treatment
Approaches”

Arrows lead from “Risk/Protective Factors” to “Sleep Difficulties” “Lack of Belonging” “Help Seeking” “Disclosing Diagnosis” “Gender Differences” and “Lack of Joy”

Arrows lead from “Treatment Approaches” to “Medication” and “Psychosocial Interventions”

An arrow leads from “Development of Appropriate Assessment Tools” to “Social Communication”

An arrow leads from “Social Communication” to “Adapting Current Tools”]