Welcome to the Workshop!

Supporting Autistic People Experiencing Suicidal Thoughts and Behaviors: Emerging Evidence and Resources

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Schedule• 9:00-9:15: Introduction and background, led by Brenna Maddox• 9:15-10:00: Crisis Supports and Considerations about Warning Signs of Suicide for the

Autism Community, led by Lisa Morgan • 10:00-10:30: Applying Suicide Theory to Prevention in Autistic People, led by Mirabel

Pelton• 10:30-10:40: Break• 10:40-11:20: Safety Planning with Autistic Adolescents and Adults, led by Shari Jager-

Hyman and Brenna Maddox• 11:20-11:50: The Use of Dialectical Behavior Therapy for People with Autism and

Suicidal Behavior: Structured and Compassionate Help, led by Anne Huntjens• 11:50-12:00: Break• 12:00-12:30: Stakeholder Priorities for Mental Health Support - Evidence for Self-

Management Approaches, led by Teal Benevides• 12:30-1:00: Discussion/Q&A, led by Sarah Cassidy

Focus of Today’s Workshop

• Practical strategies for addressing suicide risk in adolescents and

adults on the autism spectrum

• Crisis support toolkit

• Assessment, prevention, and treatment strategies

• Everyday coping strategies

• Not specific to COVID-19, but particularly relevant during these

stressful times

Autistic Individuals and Suicide

• Autistic individuals are significantly more likely to think about, attempt, and die by suicide than the general population

• Suicide is a leading cause of premature death in autistic people

• Specific vulnerability• Absence of intellectual disability• Female

Cassidy et al., 2014; Chen et al., 2017; Croen et al., 2015; Hirvikoski et al., 2016; Kirby et al., 2019

Why This Topic?

• Increasing prevalence of ASD

• Alarming rates of suicidal ideation and behaviors

• More mental health clinicians encountering autistic clients

• Large need for increased community capacity to serve this

population

Crisis Supports for the Autism CommunityNEW AUTISM RESOURCE – A TOOLKITWARNING SIGNS OF SUICIDE - CONSIDERATIONS

Goals

⮚ Describe the need for resources on suicide prevention/postvention for the autism community.

⮚ Discuss ways to identify an autistic caller/texter.

⮚ Discuss how to support autistic people who call or text a crisis line.

⮚ Explain considerations of warning signs

Crisis Supports for the Autism Community

THE NEED FOR SUICIDE PREVENTION/POSTVENTIONRESOURCES FOR THE AUTISM COMMUNITY

Why Suicide Prevention/ Postvention Resources for the Autism Community?

⮚ There are very few resources for the autism community.

⮚ Autistic people experience the world differently.

⮚ The suicide rate for autistic adults is 9 times higher than the general population, for autistic children it is 28 times higher.

⮚ Life expectancy of people with ASD is 54 years compared to 70 years for the general population with suicide being the second leading cause of premature death.

Purpose of Toolkit

►The purpose of the toolkit is to help crisis center workers and other helpers in identifying and supporting autistic callers/ texters who are in crisis.

►The resource also explains the unique differences in communication, thought processes, sensory issues, and misunderstandings a crisis worker or other helper may encounter while assisting an autistic person in crisis.

Crisis Supports for the Autism Community

IDENTIFYING AUTISTIC CALLERS/TEXTERS

Ways to Identify Autistic Callers/Texters

• Sensory difficulties• Opposite emotions• Difficulty identifying or verbalizing emotions• May need help coping with emotions• Literal thinking and understanding• Experienced countless misunderstandings / miscommunications• Difficulty with relationships• Disconnected and isolated from society• Perseveration• Unusual patterns of speech• Processing speed• Echolalia

Sensory Difficulties• Sensory challenges

⮚ can be the cause of a crisis situation⮚ affects behavior in a negative way⮚ powerful impact on a person’s life – which is unique to each

individual

• The environment ⮚ too much information bombarding a person all at once/ overload⮚ lights can be too bright, ⮚ sounds can be piercingly sharp, loud, painful, and ⮚ touch can feel uncomfortable and on up to even feeling painful⮚ smells can be extreme or there can be no sense of smell at all.

• A state of crisis ⮚ once in a crisis, callers/texters may be even more sensitive to

sensory overload than they usually experience⮚ a regression of skills such as social skills and coping skills

Difficulty Identifying/ Verbalizing Emotions

• When an autistic person responds that they do not know how they are feeling, it is a true, literal statement.

• The thought ‘they are being vague’ is not the first assumption a professional or helper should conclude.

• The caller/ texter most likely wants very much to tell someone how they feel, but they can’t.

• Giving them time to identify and/or explain their emotions can be helpful. Additionally, they may explain this in a way that is different than usual.

May present with emotions opposite of being in a crisis

• Autistic people may express different emotions than they are feeling. ⮚ For example - They could laugh, sometimes uncontrollably, when they are

feeling distressed, anxious, or overwhelmed during a crisis.

• It’s important to understand how they are presenting on a call may be opposite of the way they are feeling.

• Making assumptions based on how serious their situation might be, whether they are laughing or not, could cause misunderstanding, lead to miscommunication, and result in an ineffective or unhelpful call or interaction.

Coping with Emotions • Alexithymia is the inability to identify, express or describe one’s

feelings. It is not necessarily an autistic trait, but many autistic people struggle with it.

• Autistic people can be flooded with emotions they don’t understand, can’t identify, and don’t know how to cope with. ⮚ An autistic person may be completely overwhelmed with intense

emotions, but not know that is what they are experiencing. ⮚ They may say they are “feeling bad” or “something is wrong” or

“they don’t feel good inside” ⮚ or many other ways to describe such an onslaught of emotions

when they don’t understand or can’t identify their emotions

• It would be best if a crisis center worker could give them more time, use fewer words to communicate, and perhaps use questions with one-word answers.

Literal thinking and understanding

• An autistic person can be very literal in how they think and perceive the world.

• It is important to say exactly what you mean and mean what you say when communicating with an autistic person.

• Being on a phone call or writing a text makes it difficult for an autistic person to ascertain whether to trust the person on the other end and words are one of the ways to build trust.

• Understanding how autistic people can be very literal thinkers will help facilitate a successful call or text.

Has experienced countless misunderstandings/miscommunications

• Everyone experiences misunderstandings and miscommunications in life.

• A defining characteristic of autism is having difficulty with social communication and social interactions across multiple circumstances.

• The misunderstandings and miscommunications an autistic person experiences can be multiple, in many different relationships, all at once.

• The caller/texter may also state their miscommunications are difficult to resolve - and that would be due to the very nature of autism.

Difficulty Making and Sustaining Relationships

• Relationships can be confusing for autistic people due to the nature of autism having difficulties with social communication and interactions.

• Many autistic people have shared they can make a friend, but find it too difficult to keep a friendship going.

• This rejection can cause a crisis situation for an autistic person; especially if there have been multiple friendships that have ended in this way.

• Relationships, such as acquaintances, business partners, colleagues, neighbors, retail employees, etc., can also suddenly end with no warning or reason that is understood by an autistic person.

Feels disconnected and isolated from society

• Autistic people can tell of experiences with bullying, being excluded, rejected and ostracized by society for many reasons, but mostly because they are different.

• The difficulties with social communication and interactions can result in autistic people feeling disconnected and isolated from society as a whole.

• They can feel as if they don’t belong to this world because they don’t understand social situations, the environment causes discomfort and distress, and relationships can be very confusing. It is a feeling of deep loneliness and complete aloneness.

• The feeling will most likely be literal, not rhetorical.

Perseveration• Perseveration is a defining aspect of autism. It is the rumination

of thoughts both positive or negative.

• In crisis, an autistic person perseverating on negative thoughts may have great difficulty shifting their thinking to more positive thoughts. An autistic person may get stuck in a loop thinking about words and phrases because of the perseverating, unable to break out of their thought pattern.

• It could be perceived by the crisis center worker as not listening, refusing to cooperate, or being done on purpose.

• Perseveration is not something an autistic person would do on purpose.

Unusual Patterns of Speech

• Some autistic people may have a way of talking that is not common.

• Autistic people may have a high vocabulary, talk slowly and carefully, and /or pace their words so they sound pedantic or robotic. There may be no inflection in their voice.

• They are not talking this way to be uncooperative or as a joke.

• It is their way of talking and a way for a volunteer to identify whether they are communicating with an autistic person.

Processing Speed

• Autistic people have varying processing speeds unrelated to intelligence.

• Processing speed can be negatively correlated to anxiety; meaning the higher the anxiety, the slower the processing speed.

• Autistic people may take longer than usual to respond. It is helpful to continue to be patient and wait for the caller/texter to respond instead of asking more questions, especially if the caller is still trying to communicate.

• The worst possible action to take at this time is to end the call due to thinking either the caller/texter is done talking.

Echolalia

• Echolalia (eko-ley-lia) is a reactive, uncontrollable, and immediate mimicking of another person’s words, sounds, and/ or phrases.

• Echolalia is usually due to the enjoyment in repeating a word, sound, or phrase.

• An autistic person using echolalia may sound like they are taunting, or mocking the person helping them, but they are not; they are finding enjoyment in repeating the words, sounds, or phrases.

• Echolalia is not something to take personally.

Crisis Supports for the Autism Community

SUPPORTING AUTISTIC CALLERS/TEXTERS

Supporting Callers/ Texters

►Ask direct, clear questions - use fewer words and get straight to the point

►Allow extra time to process thoughts and formulate words

►Help shift the thoughts - ask about any special interests

Supporting Callers/ Texters

►Avoid using metaphors, social nuances, or slang►Speak using words of logic - not emotional words►Explain positive coping skills - and how they are

helpful

Ending the call/ text

• Facilitate a safety plan

• Encourage the caller/texter to write down the plan.

• Help the autistic caller/texter get connect with local resources

• Discuss, write down, and possibly practice what to say when contacting local resources for help.

Crisis Supports for the Autism Community

Warning signs of suicide -Considerations for the autism community

SUICIDE WARNING SIGNS

(From the AAS website)► Increased substance (alcohol or drug) use► No reason for living; no sense of purpose in life► Anxiety, agitation, unable to sleep or sleeping all of the time► Feeling trapped – like there’s no way out► Hopelessness► Withdrawal from friends, family and society► Rage, uncontrolled anger, seeking revenge► Acting reckless or engaging in risky activities, seemingly without

thinking► Dramatic mood changes► Giving away prized possessions or seeking long-term care for pets

DIFFERENTIAL CONSIDERATIONS

The following explanations are considerations to pay attention to when assessing an autistic person for suicide ideation and or attempt.

WARNING:

► Do not make any important, life-altering decisions based on the information in the following slides.

► This information is here to broaden existing knowledge about autistic people.

► Your autistic client knows the most about themselves. Your job is to help them communicate their needs to you.

CONSIDERATIONS

No reason for living; no sense of purpose in life

►An autistic person may feel this way due to social isolation, but one must take into consideration comments such as:

“I don’t belong to this world.”“I’ve never fit into this world.”

►These statements may just the reality of an autistic person not belonging to this world culturally and socially.

Anxiety, agitation, sleep issues

These characteristics are something many autistic people struggle with naturally. So how might one know if they are signs of suicidality?

►Be specific and investigate any changes in anxiety or sleep in an autistic person.

Feeling trapped –like there’s no way out

► They can’t escape their autism or how society in this culture treats them.

► There is no way out and an autistic person will most likely be very honest about that fact.

► Saying the blatant truth is not a warning sign of suicide.

Withdrawal from friends, family and society

►Withdrawal from friends, family, and society is a coping mechanism for autistic people.

►It is needed by the majority of them for self-care in staying regulated and feeling well.

►Withdrawing can also be a suicide warning sign for autistic people as well.

►Before checking the box, search for changes in the amount of withdrawing.

Rage, uncontrolled anger, seeking revenge

►An autistic meltdown is an overloaded sympathetic nervous system.

►They are NOT temper tantrums.

► Very few, if any, autistic people can stop a meltdown from pure will or want. A true meltdown must run its course.

►The best way to deal with a meltdown is to keep the person safe until it subsides.

Acting reckless or engaging in risky activities,

seemingly without thinking

► What may look like reckless could be:

❏ Perseverating❏ Over thinking❏ Deeply thinking or❏ Not understanding the circumstances

►Look further into the reasons behind the behavior to determine if the autistic person is in a suicidal crisis or not.

Dramatic mood changes

►Happen due to overwhelming emotions, sensory difficulties, and/or change.

►These mood changes would differ from meltdowns most likely be able to reason with someone who is helping them.

►Reframing the situation or helping them perceive what happened in a different way could help a mood change.

Unique Risk Markers

►According to a study by Cassidy et al. (2018) there are two unique risk markers for suicidality among autistic people.

►Unmet needs ►Camouflaging (Masking)

Thank you!For consultations and specific training needs...

email me at:www.ragabeleconsulting@gmail.com

or go to my website:www.autismcrisissupport.com

References

Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study. Cassidy, S., Bradley, P.,Robinson, J., Allison, C., McHugh, M., Baron-Cohen, S. Lancet Psychiatry. 2014 Jul;1(2):142-7. doi: 10.1016/S2215-0366(14)70248-2. Epub 2014 Jun 25.

Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autismspectrum disorder. British Journal of Psychiatry, 208(3), 232-238. doi:10.1192/bjp.bp.114.160192

Sarah Cassidy, Louise Bradley, Rebecca Shaw, Simon Baron-Cohen Risk markers for suicidality in autistic adults Molecular Autism, Volume 9, Article 42, July 2018

Applying suicide theory to prevention in autistic peopleMirabel Pelton, Centre for Intelligent Healthcare

Applying suicide theory to prevention in autistic people

1. Why is theory important?

2. The Interpersonal Theory of Suicide

3. The need for social connections and self-worth

4. Vulnerability could be overlooked

5. Avoid interventions that encourage ‘masking’

6. Accurate risk assessment in autistic people

7. Social belonging as a protective factor

8. Summary

peltonm@uni.coventry.ac.uk @MiraPel1

The top 10 autism community priorities for future research:

How well do existing models of understanding suicide apply to autistic people?

“ … prediction was only slightly

better than chance for all

outcomes … predictive ability

has not improved across 50

years of research” (Franklin et

al 2017)

“It wasn’t her inability to fit

into society that drove her to

suicide so much as it was

society’s inability to adapt to

fit to her needs as an outlier

from the norm” (Milton 2012)

peltonm@uni.coventry.ac.uk@MiraPel1

Why theory is

important?“Only two interventions have

been shown to prevent deaths

by suicide …” (Van Orden

2010)

The Interpersonal Theory of Suicide

Suicidal capability (Fearlessness about death)

Perceived burdensomenessThwarted belonging

‘I just felt like a

burden ‘cause I didn’t

get as much as I

wanted to but I was

made to feel that

that was more than I

deserved’ (Ambitious

about Autism 2015)

‘More likely to experience

maltreatment, peer victimization,

community violence, financial

stress, parent separation … live

with individuals with mental health

and drug or alcohol problems …’

(Kerns et al 2019)

‘Loneliness was associated

with increased depression

and anxiety and decreased

life satisfaction and self-

esteem’ (Mazurek 2014)

Risk of suicide

attempt

peltonm@uni.coventry.ac.uk @MiraPel1

‘Increase in isolation, loss of

structured social activities,

new ways to connect, remote

working, less need for

masking

peltonm@uni.coventry.ac.uk@MiraPel1

Promoting social inclusion and self-worth are vital for suicide prevention

in autistic and non-autistic

people

Thwarted belonging

Report of suicidal thoughts or

attemptAutistic traits

Autistic traits are associated with suicidality through perceived burden and thwarted belonging

Burden

peltonm@uni.coventry.ac.uk@MiraPel1

The model explains 10% of the variance

in autistic people versus 30% in non-

autistic people

Vulnerability could present

differently

Thwarted belonging and

perceived burden

associated with suicidal

thoughts in non-autistic

people, were associated

with suicide attempts in

autistic people

peltonm@uni.coventry.ac.uk@MiraPel1

Vulnerability could be

different in autistic adults,

women may be more vulnerable

Autistic women were 13

times more likely to die by

suicide than non-autistic

women versus 6 times more

likely for that of autistic

versus non-autistic men

(Hirvikoski et al 2016)

Gender differences in

non-autistic people were

not found in the autistic

group

“Autistic women present distinct

characteristics which reduced

likelihood of diagnosis … associated

with poor access to services,

employment problems and poor mental

health”

Avoid interventions that promote

‘camouflaging’

‘Efforts to ‘mask’ or ‘compensate’ for autistic

characteristics … which result in a less autistic behavioural

presentation’ (Hull et al 2019)

peltonm@uni.coventry.ac.uk@MiraPel1

Thwarted belonging

Report of suicidal thoughts or

attemptAutistic traits

Camouflage

Accurate risk assessment risk in autistic people

peltonm@uni.coventry.ac.uk @MiraPel1

Social Belonging QuestionsAutistic and non-autistic people responded …

These days, I feel like I belong SameThese days, I am fortunate to have many caring and supportive friends

Same

These days I feel disconnected from other people

Same

These days I am close to other people DifferentThese days, I often feel like an outsider at social gatherings

Different

• All burdensomeness items relied on non-autistic theory of mind: ‘The people in my life would be happier without me’

• Scores cannot be compared between autistic and non-autistic people• Burdensomeness and thwarted belonging may be experienced and

expressed differently by autistic people

Social belonging as a protective factor

• Social belonging/ connections the most consistent protective factor

• In the past, unhelpful assumptions about autistic people lead to misunderstanding, barriers to accessing services

• Autistic and non-autistic people have different communication styles, preferences – double empathy problem (Milton, 2012)

• We are asking ‘what does social belonging mean’ to try to inform our future research

• Maintain all the communication options that have become available during the COVID-19 crisis

• Exploring how individual social needs are experienced and expressed and to what extent these are being met?

What does this mean for suicide prevention?

• Promoting inclusion and self-worth are important for suicide prevention

• Autism acceptance and increased understanding are important

• Autistic women are at risk of being overlooked due to non-autistic norms and camouflaging

• Interventions should avoid encouraging people to mask autistic characteristics

• Understanding and familiarizing with individual communication style is vital to bridge the ‘double empathy gap

• Meeting social needs is important for suicide prevention and should be assessed on what meets the needs of the individual

What does this mean for these uncertain times?

• Social belonging and connectedness https://www.youtube.com/watch?v=PrrryR-8LFo&feature=youtu.be

• Coping with uncertainty https://www.youtube.com/watch?v=DRL2nkC_i-8&feature=youtu.be

• Hosting accessible online events https://www.autistica.org.uk/what-is-autism/coronavirus/accessible-online-events

• Ensure we maintain the reasonable adjustments that autistic people have been asking for for years and respecting personal communication preferences

What does social belonging mean to you?

• Please join discussion and creative project about the meaning of social belonging

• We want as many views as possible!

• Visit our website at https://belong.Coventry.domains

• Follow @isbelonging on twitter and Instagram

With gratitude to the autistic adults who shared their views and experiences and to everyone who has given their time to take part in our research. I’m grateful for the support and inspiration of my PhD supervisory team Sarah

Cassidy, Kim Bul, Hayley Crawford, Ashley Robertson, Jacqui Rodgers and to funders: Coventry University, Coventry City of Culture, Funds for Women Graduates and PsyPAG.

For more on the belonging project, full, free copies of all publications in this presentation visit https://belong.Coventry.domains

To discuss social belonging and connectedness follow @isbelonging

For updates on my research: @MiraPel1

Safety Planning with Autistic Adolescents and Adults

aPenn Center for the Prevention of SuicidebPenn Center for Mental HealthDepartment of Psychiatry

Shari Jager-Hyman, PhDa

Brenna B. Maddox, PhDb

1

Acknowledgments

Samantha Crabbe, MSEd David Mandell, ScD

2

Overview

• Introduction to the Safety Planning Intervention (SPI)

• Acceptability of the SPI and suggested modifications for use with autistic people

• Modifications to safety planning using telehealth

3

How Do We Mitigate Suicide Risk in Autistic People?

• No published studies on suicide interventions for autistic individuals

• No tailored evidence-based practices or consensus clinical guidelines

• No knowledge about barriers and facilitators to implementing suicide prevention strategies for individuals on the spectrum

4

Could the Safety Planning Intervention Help Autistic People Manage Suicide Risk?

5

Safety Planning Intervention (SPI)

• An evidence-based suicide prevention intervention

• Brief

• Individually-tailored

Stanley & Brown, 2012

6

© Stanley & Brown (2017)

7

SPI and Autism: A Good Fit?

• Written

• Concrete

• Step-wise

• Implementable via telehealth

• Can help people manage suicide risk from home

8

SPI and Autism: Potential Challenges?

• Difficulties with social communication and interactions

• Difficulties with emotion recognition and regulation

• Difficulties with executive functioning

9

SPI and Autism: Important Considerations

• Perceptions of autistic people and their families

• Clinicians’ attitudes and behavior related to suicide prevention for autistic clients

• Clinicians’ knowledge of and confidence in using SPI with autistic clients

10

Are you very confident in your ability to intervene when an autistic client is determined to be at risk for suicide?

Yes 24%

No76%

11

Have you used the Safety Planning Intervention in your practice with autistic individuals?

Yes17%

No83%

No83%

12

Preliminary Themes from Interviews

• Advantages of SPI with autistic people

• Disadvantages of SPI with autistic people

13

“I like that it [the safety plan] is individualized. I like that it can be filled in based on the client’s personality and characteristics.”

- Clinician

14

“I think it would be very useful to go through these steps and plan it. Again, it [a safety plan] is something that we didn’t have. And it potentially could’ve prevented my son trying to harm himself, for sure, if he had had something like this. So, I think it’s good.”

- Mother of an autistic young adult

15

“Pretty much knowing this [suicidal crisis] could happen again, and again, and again is kindaterrifying, but not the worst thing in the world. Because then we’re prepared for the future if this ever happened.”

- Autistic adult

16

“I think it [the Safety Plan form] would give it a guideline that you could look back to afterwards that should be handy….I think that sometimes my only problem after therapy is that sometimes I don’t know what I’m taking out after it.”

- Autistic adult

17

Preliminary Themes

• Suggested modifications to SPI:• Making the text more direct and concise• Decreasing the emphasis on social supports

and settings• Increasing education and practice related to

internal coping strategies and warning sign recognition

• Increasing the involvement of family members• Incorporating visual supports • Leveraging technology

18

CBT Modifications for Autism

• Increased use of visual aids• Use of clear language and concise instructions• Increased frequency of exposures• Incorporation of special interests • Increased involvement of family members• Awareness of sensory sensitivities• Concurrent treatment of social skills • More didactics about emotion

19

Modifications for Virtual Practice

20

Tips for Virtual Settings

• Indentify current location and emergency contacts at the start of the encounter

• Develop a plan for if the call/video is dropped

• Assess client discomfort in discussing suicidal feelings

• Develop a plan for how to stay on the phone with the client while arranging emergency rescue, if needed

• With permission, contact 1 or 2 key supports

Stanley, 2020

21

Working with Suicidal People During COVID-19

• Inquire about the emotional impact of COVID on suicide risk

• Pay particular attention to:• Social isolation• Decreased access to services and support• Financial concerns• Anxiety about own or others’ health• Impact of disrupted routine• Conflict with others • Increased access to lethal means, including

medicationsStanley, 2020

22

TAKE CARE OF YOURSELF!

23

THANK YOU!

24

Resources• National Suicide Prevention Lifeline:

• Call: 800-273-8255 (TALK)• Chat: www.suicidepreventionlifeline.org/chat/ • Text: Text “HOME” to741741; crisistextline.org

• Disaster Distress Helpline• Call: 800-985-5990• Text/SMS: Text “TalkWithUs” or “Hablanos” to 66746• www.samhsa.gov/find-help/disaster-distress-helpline

• Providing Suicide Care During COVID-19: http://zerosuicide.edc.org/covid-19

• Suicide Prevention Resource Center: www.sprc.org

25

Resources, Continued• The Trevor Project

• TrevorLifeline: 866-488-7386• TrevorText: Text START to 678678• TrevorChat: https://www.thetrevorproject.org/get-help-

now/

• Safety Planning Intervention Website: www.suicidesafetyplan.com

• Now Matters Now: https://www.nowmattersnow.org/

26

References• Stanley, B. S. & Brown, G. K. (2012). A brief intervention

to mitigate suicide risk. Cognitive and Behavioral Practice, 19, 256-64.

• Stanley, B. S., Brown, G. K., et al (2018). Comparison of the Safety Planning Intervention with Follow-up vs usual Care of Suicidal Patients Treated in the Emergency Department. JAMA Psychiatry.

• Stanley, B. S. (2020). Telehealth tips: Managing suicidal clients during the COVID-19 pandemic

• Training Inquiries: Penn Center for the Prevention of Suicide, www.med.upenn.edu/suicide/training.html

THE USE OF DIALECTICAL BEHAVIOR THERAPY

FOR PEOPLE WITH AUTISM AND SUICIDAL BEHAVIOR:

STRUCTURED AND COMPASSIONATE HELP

Anne HuntjensPsychotherapist/ PhD student

1

OVERVIEW

1. Introduction

2. The effect of dialectical behavior therapy

in autism spectrum patients with

suicidality and/or self–destructive

behavior (DIASS): study protocol for

DIASS: a randomized multi-center

controlled trial

3. Interventions in times of crisis 2

WHAT DO WE KNOW ALREADY?

No effective treatment for suicidalbehavior for people with autism

Makes treatment teams reluctant to act and leads to frustration, misunderstanding, control attempts and fear on both sides

Has harmful consequences for patient and their loved ones 3

WHAT WE ALSO KNOW

Mental Health Diagnoses mental health

problems impulse control interpersonal relationship self-image

Emotion dysregulation

4

DIASS

5

"I now understand better why certain emotions arise and especially that they do not come out of

nowhere. There is always something preceding and often even multiple events.”

“My previous therapists used to tell me to think differently if I feel so bad. But I never knew how?

Now I can really do something different with the learned skills that make me feel competent and I

no longer have to damage myself to get rid of tension”

“The chain analyzes during the individual therapy have given so much insight into the fact that

nothing happens automatically and especially that you can change something yourself. I've

learned to accept myself more and how to survive the crisis moments and when I’m feeling

overwhelmed by emotions”. 6

DIALECTICAL BEHAVIOR THERAPY

Learning theory(change)

Validation(acceptance)

DIALECTICS

7

DIALECTICAL BEHAVIOR THERAPY

Individual therapy

Telephone consultation

Consultation team

Group skills training • Mindfullness

• Distress tolerance• Emotion regulation

• Interpersonal effectiveness

8

ADAPTATIONS/ STRIKING POINTS

Co-writing ½ time Consultation-to-the-client principle

9

DBT SKILLS during COVID -19

REDUCING VULNERABILITY TO EMOTION MIND

ABC

Accumulate positive emotions

Build mastery

Cope ahead of time

PLEASE SKILLS

Physical

iLlness

Eat balanced meals

Avoid mood-altering drugs

Sleep balanced

Exercise10

DBT SKILLS duringCOVID -19

REDUCE VULNERABILITY : ABC PLEASE

CHECK THE FACTS

RADICAL ACCEPTANCE

MINDFULNESS OF EMOTION

INTERPERSONAL EFFECTIVENESS SKILLS

11

CONTACT DETAILS

Anne Huntjensannehunt@xs4all.nl

+31614433568

12

Stakeholder Priorities for Mental Health Support

Evidence for Self-Management ApproachesTeal W. Benevides, PhD, MS, OTR/L

Associate Professor

Augusta University

1

Tbenevides@augusta.edu

Disclosure of Conflicts of Interest• Teal Benevides declares no financial conflicts of interest.• Portions of this presentation contain content from a funded study through a Patient-Centered

Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EAIN# 4208), “Autistic Adults and other Stakeholders Engage Together (AASET)”. The views presented in this presentation are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee.

• Portions of this presentation have been presented elsewhere, and the following publications describe aspects of this project: – Benevides, T.W., Shore, S., Palmer, K., Duncan, P., Plank, A., Andresen, M.L., Caplan, R., Cook, B.,

Gassner, D., Hector, B.L., Morgan, L., Nebeker, L., Purkis, Y., Rankowski, B., Wittig, K. & Coughlin, S.S. (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24 (4), 822-833. https://doi.org/10.1177/1362361320908410

– Benevides, T.W., Shore, S., Andresen, M.L., Caplan, R., Cook, B., Gassner, D.L., Erves, J.M., Hazlewood, T.M., King, M.C., Morgan, L., Murphy, L.E., Purkis, Y., Rankowski, B., Rutledge, S.M., Welch, S.P., and Wittig, K. (2020). Interventions to Address Health Outcomes Among Autistic Adults: A Systematic Review. Autism (online first). https://doi.org/10.1177/1362361320913664

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Acknowledgements

Many thanks to our AASET colleagues, co-authors and partners who have supported the development of the content related to autistic priorities, especially the

entire AASET Community Council, and those that shared their perspectives through our survey, focus

groups, and meetings.

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ObjectivesAt the conclusion of this presentation, learners will:

1. Discuss opportunities for promoting increased mental health and well-being, aligned with priorities that are identified by autistic adults.

2. Interpret evidence that supports self-management of mental health with autistic adults.

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Fundamental Need to Ensure Autistic Individuals are Involved in Setting Priorities for Research & Practice● Gaps exist:

○ Priorities of the adult community have not been comprehensively sought and systematically addressed in the U.S.

○ Practitioners, researchers, funders, organizations, and others may benefit from knowledge about how to best engage with the adult community in collaborative ways.

○ In order to best support individuals, available resources and supports must align with priorities that individuals report needing.

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Funded by PCORI to Accomplish the Project Goals

To meaningfully include and engage autistic stakeholders in answering the following questions:

1. What are the health research priorities as identified by autistic adults?

2. What available research exists to support those priority topics?

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Stakeholder Engaged Research• Established a Project Team comprised of autistic and non-autistic individuals

• Established a paid Community Council of autistic adults and other stakeholders to inform and guide patient-centered outcomes research

• 18 Community Council members joined and contributed

• Bios and info available at www.autistichealth.org

• Involved other stakeholder individuals and organizations in priority-setting

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Approximately 400 people engaged with us over 2 years

● Participatory action research approaches 1/1/2017-12/31/2018

○ Large group stakeholder meetings

■ July 2017 (n=51)

■ November 2018 (n=64)

● Online survey of autistic adults, launched Aug 2018 (n=249)

● Face-to-face focus groups of autistic adults Aug-Nov 2018 (n=26)

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Disconnect between what autistic individuals see as important and what society sees as important

• Respect for Neurodiversity and positive attributes of autism

• Recognition of the mental health implications of curative and ‘fixing’ interventions; lasting trauma

• Opportunities to self-manage health and well-being with community-available and other approaches

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Autistic Adults and other Stakeholders Engage Together Research Priorities

Mental Health Priorities1. Address trauma and stigma through trauma-informed care practices.

2. Reduce societal discrimination and increase sense of identity and opportunity in society.

3. Identify which self-managed interventions and community-available approaches are effective at improving well-being, quality of life, and mental health.

4. Evaluate long-term adverse events following exposure to treatments that are currently recommended.

5. Identify how to measure autistic quality of life, anxiety, social well-being and sleep outcomes.

10Benevides, T.W., Shore, S. and the AASET Community Council (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24, 822-833 (Special Issue in Mental Health). https://journals.sagepub.com/doi/full/10.1177/1362361320908410

What is ‘self-management’?• Self-management interventions aim to give individuals the knowledge and skills to

successfully manage symptoms and personal health outcomes.

– Generally community-available

– Generally low cost or free

– Sometimes supported by case-management or peer-support

• The majority of evaluated self-management interventions are for those with chronic physical health conditions.

• A recently published systematic review and meta-analyses (Lean et al., 2019) found that self-management interventions for persons with severe mental illness resulted in significantly better:

– Self-efficacy at managing symptoms

– Functioning

– Quality of life outcomes

• Few studies have been conducted on self-management interventions for individuals with autism spectrum disorder.

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Priority Interventions to Address Mental Health

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Intervention or ApproachWould Participate, f (%)

Relative Weighted Rank^

Art therapy 103 (43.6%) 1Physical activity/Exercise 99 (41.9%) 2Animal assisted therapy 116 (49.2%) 3Music therapy 93 (39.4%) 4Tai-chi 85 (36%) 5Occupational therapy 79 (33.5%) 6Cognitive behavioral therapy 76 (32.2%) 7Yoga 92 (39.0%) 8Psychotherapy 74 (31.4%) 9Suicide prevention/ crisis response evaluation 63 (26.7%) 10

Table 2. Online Survey Participants Who Endorsed “I would participate” in Mental Health Interventions and Weighted Rank

Benevides, T.W., Shore, S. and the AASET Community Council (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24, 822-833 (Special Issue in Mental Health). https://journals.sagepub.com/doi/full/10.1177/1362361320908410

Contain elements of self-management

Other Frequently Reported Open-Ended Responses from Survey & Focus Groups

• Mindfulness-based stress reduction, meditation, and other complementary and alternative approaches

• Cannabinoids, medical marijuana

• Autistic-led or peer-led support groups

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Benevides, T.W., Shore, S. and the AASET Community Council (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24, 822-833 (Special Issue in Mental Health). https://journals.sagepub.com/doi/full/10.1177/1362361320908410

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Priority self-management approachesSupport in broader adult literature

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Evidence Theme Strength of Evidence

For Improving… Clinical Implications

Cognitive Behavioral Therapy

Emerging Evidence

(6 studies: 2 RCT, 2 quasi, 2 lower)

AnxietyOCD

Only for adults without ID

Group or individual CBT, adapted for autistic adults, for 12-108 hours (median 19 hours), delivered weekly for 1-1.5 hours for ~12 weeks.

Mindfulness approaches

Emerging Evidence

(2 studies: 1 RCT, 1 quasi)

Depression Anxiety

Only for adults without ID

Group mindfulness for 1.5-2.5 hours a session, for 9-12 weeks.

Benevides, T.W., Shore, S., Andresen, M.L., Caplan, R., Cook, B., Gassner, D.L., Erves, J.M., Hazlewood, T.M., King, M.C., Morgan, L., Murphy, L.E., Purkis, Y., Rankowski, B., Rutledge, S.M., Welch, S.P., and Wittig, K. (2020). Interventions to Address Health Outcomes Among Autistic Adults: A Systematic Review. Autism (online first). https://doi.org/10.1177/1362361320913664

Limitations to the Evidence on Mindfulness Approaches and CBT Approaches

• Limited evidence on longer-term outcomes• No evidence for those with co-occurring intellectual

disability• Approaches to increase self-management (e.g. delivery

through apps, peer support or follow up) not evaluated

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Priority self-management approachesNo support for the following interventions for autistic adults, although support in broader adult literature

Caution should be applied, and inclusion of autistic individuals in adapting these to meet specific individual needs is warranted.• Yoga

• One systematic review and meta-analysis found limited support for individuals with anxiety and depression (Vollbehr et al., 2018)

• One SR and MA found limited support for individuals with PTSD (Cramer, Anheyer, Saha & Dobos, 2018)

• Tai-chi– 5 RCTs found statistically significant improvements in depression outcomes following tai-chi

(Solloway et al., 2016)

• Exercise & Physical Activity– PA and exercise is moderately better than placebo or other interventions in non-autistic adults

(Cooney et al., 2013).

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Priority self-management approachesNo support for autistic adults, no support in broader adult literature, anecdotal evidence only

• Use of art and art-based approaches

• Use of music and music-based approaches

• Use of animals and animal-assisted therapies

• Use of cannabinoids or medical marijuana

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No evidence supports these interventions for improving mental health among adults on the autism spectrum.

Caution should be applied.

Recommendations Based on Available Literature

• Mindfulness approaches are effective, and can be learned and incorporated into daily life to improve mental health

– Consider the use of these approaches imbedded into daily routines that improve ability to manage stressful or otherwise needed self-care.

– Example: Engage in mindfulness or meditation prior to sleep as part of an evening routine.

– Example: Engage in a restful self-care routine that involves mindful selection of desired activities that are calming

– Example: Mindfully engage or choose not to engage in social media and news– https://www.spectrumwomen.com/life-through-the-lens-of-autism/overcoming-ptsd-with-asd-by-lisa-morgan-m-ed-

cas/ (Lisa Morgan)

– https://www.spectrumwomen.com/featured/be-mindful-be-present-be-you-how-to-handle-crisis-anxiety-becca-lory-hector-cas-bccs/?fbclid=IwAR2CZs0Sj1mgQPJVz1SPmXBeNeAO3PDQGCJIVxze4IyHxlvz_BDX1iDaLEM (Becca Lory Hector)

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Recommendations Based on Available Literature

• Engaging in physical activity, tailored to the individual’s preferences, can be helpful

– Tai-chi and yoga incorporate mindful movements with physical activity.

– Physical activity should be enjoyable to the person- hiking, swimming, biking, walking, jogging, etc- and may include opportunities for ‘being with’ others without the need for structured conversation

– Incorporating into daily routines is essential. Some people find it helpful to walk a dog, or plan a time with a neighbor.

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Recommendations Based on Available Literature

• Participating in a cognitive-behavioral program designed for adults on the spectrum may have benefits for teaching people cognitive strategies for reducing repetitive thoughts and behaviors, and anxiety

• Several programs exist with protocols– these are usually adapted by and for autistic individuals, and often involve peer-led approaches

• Learning strategies to identify negative thoughts or ruminations, stopping or replacing those thoughts, and engaging in alternative activities that are positive can be usually applied once learned in a variety of settings.

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CBT and Mindfulness Citations• Ekman, E., & Hiltunen, A. J. (2015). Modified CBT using visualization for Autism Spectrum Disorder (ASD),

anxiety and avoidance behavior--a quasi-experimental open pilot study. Scand J Psychol, 56(6), 641-648. doi:10.1111/sjop.12255

• Hesselmark, E., Plenty, S., & Bejerot, S. (2014). Group cognitive behavioural therapy and group recreational activity for adults with autism spectrum disorders: a preliminary randomized controlled trial. Autism, 18(6), 672-683. doi:10.1177/1362361313493681

• McGillivray, J. A., & Evert, H. T. (2014). Group cognitive behavioural therapy program shows potential in reducing symptoms of depression and stress among young people with ASD. J Autism Dev Disord, 44(8), 2041-2051. doi:10.1007/s10803-014-2087-9

• Russell, A. J., Jassi, A., Fullana, M. A., Mack, H., Johnston, K., Heyman, I., . . . Mataix-Cols, D. (2013). Cognitive behavior therapy for comorbid obsessive-compulsive disorder in high-functioning autism spectrum disorders: a randomized controlled trial. Depress Anxiety, 30(8), 697-708. doi:10.1002/da.22053

• Sizoo, B. B., & Kuiper, E. (2017). Cognitive behavioural therapy and mindfulness based stress reduction may be equally effective in reducing anxiety and depression in adults with autism spectrum disorders. Res Dev Disabil, 64, 47-55. doi:10.1016/j.ridd.2017.03.004

• Spek, A. A., van Ham, N. C., & Nyklicek, I. (2013). Mindfulness-based therapy in adults with an autism spectrum disorder: a randomized controlled trial. Res Dev Disabil, 34(1), 246-253. doi:10.1016/j.ridd.2012.08.009

• Weiss, J. A. & Lunsky, Y. (2010). Group cognitive behaviour therapy for adults with Asperger syndrome and anxiety or mood disorder: a case series. Clin Psychol Psychother, 17(5), 438-446. doi:10.1002/cpp.694

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References- Yoga, Tai-Chi, & Exercise

• Cooney GM, Dwan K, Greig CA, Lawlor DA, Rimer J, Waugh FR, McMurdo M, Mead GE. Exercise for depression. Cochrane Database of Systematic Reviews 2013, Issue 9. Art. No.: CD004366. DOI: 10.1002/14651858.CD004366.pub6.

• Cramer, H., Anheyer, D., Saha, F.J., & Dobos, G. (2018). Yoga for posttraumatic stress disorder- a systematic review and meta-analyses. BMS Psychiatry, 18, 72-https://doi.org/10.1186/s12888-018-1650-x

• Solloway, M. R., Taylor, S. L., Shekelle, P. G., Miake-Lye, I. M., Beroes, J. M., Shanman, R. M., & Hempel, S. (2016). An evidence map of the effect of Tai Chi on health outcomes. Systematic reviews, 5(1), 126. doi:10.1186/s13643-016-0300-y

• Vollbehr NK, Bartels-Velthuis AA, Nauta MH, Castelein S, Steenhuis LA, HoendersHJR, et al. (2018). Hatha yoga for acute, chronic and/or treatment-resistant mood and anxiety disorders: A systematic review and meta-analysis. PLoS ONE, 13(10), e0204925. https://doi.org/10.1371/journal.pone.0204925

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Questions and Comments Welcome

Thank you!

tbenevides@augusta.edu

– Benevides, T.W., Shore, S., Palmer, K., Duncan, P., Plank, A., Andresen, M.L., Caplan, R., Cook, B., Gassner, D., Hector, B.L., Morgan, L., Nebeker, L., Purkis, Y., Rankowski, B., Wittig, K. & Coughlin, S.S. (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24 (4), 822-833. https://doi.org/10.1177/1362361320908410

– Benevides, T.W., Shore, S., Andresen, M.L., Caplan, R., Cook, B., Gassner, D.L., Erves, J.M., Hazlewood, T.M., King, M.C., Morgan, L., Murphy, L.E., Purkis, Y., Rankowski, B., Rutledge, S.M., Welch, S.P., and Wittig, K. (2020). Interventions to Address Health Outcomes Among Autistic Adults: A Systematic Review. Autism (online first). https://doi.org/10.1177/1362361320913664

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Summary of Anecdotal Evidence Which Needs Research

• Approaches which incorporate creative movement or arts are anecdotally reported to increase well-being. Any activity that allows an individual to express themselves and participate in meaningful engagement is recommended.

• The importance of animals and the therapeutic impact of animals on mental health is reported by many on the autism spectrum. Broadly, animals can have a positive impact on mental health, but the ability to ensure a correct match between human and animal is likely to be essential.

• The use of cannabinoids, while anecdotally reported to reduce anxiety by adults in states in which medical marijuana is legal, has not yet been evaluated systematically, and adverse effects and contraindications are not widely available.

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If you could read one headline about autism, what would it be?• “Unique challenges of neurodivergent adults in society to be focus of major

new initiatives following paradigm shift in autism and related fields”

• “50 year intergenerational study confirms that affordable/accessible resources and supports, in the form of education, transportation, healthcare and housing improve overall quality of life, lifespan, and contribute to fewer co-occurring health conditions.”

• “Breaking news, research confirms most "struggles" with autism really due to lack of acceptance and accommodation for autistic people.”

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