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Addressing Mental Health Problems in Youth on the Spectrum: Individual and Contextual Solutions Jonathan A. Weiss, Ph.D., C.Psych.

Oklahoma Statewide Autism Conference, November 2018

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Overview• Individual-contextual approach to mental health

• The individual as the target

• The family as target

• The community as target

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Mental health problems in youth with autism

• 4-5x greater than youth in the general population (Totsika et al. 2011)

• 70% will meet criteria for at least one psychiatric disorder, and many meet criteria for multiple conditions (Simonoff et al., 2008)

• Overall rates may be inflated due to miscoding autism symptoms, but the same pattern emerges (Mazefsky et al, 2012)

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It’s not just about autism

19 22 18

84

6474

63

46 42

87

6571

0102030405060708090

100

Hyperactivity Conductproblems

Emotionalproblems

%ComparisonASDIDASD/ID

• Population based study of 5 to 16 year olds in the UK; M age = 10 years (SD = 3.0) (Totsika et al., 2011)

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It’s not just about kids

Weiss et al. (2017)

Young adults (18-24 years of age)

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It’s not just about anxiety

• Transdiagnostic processes

• Anxiety can be the tip of the iceberg

• Depression and anxiety are correlated with externalizing issues (noncompliance, aggressive behaviour, and irritability)

• Many psychiatric diagnoses at the same time

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Interactions (Wood & Gadow, 2010)

In Wood, J., & Gadow, K. (2010). Clinical Psychology: Science and Practice, 14, 281-291.

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Take a moment• Think about a child / teen / adult

Domains Biological Psychological Social-Relationship

Social-Environmental

Factors Genetic,developmental,medical,toxicity,tempermentalfactors

Cognitivestyle,psychologicalconflicts,self-image,meaning,schema

Family,peers,others

Culture/ethnicity,socialriskfactors,systemsissues

Predisposing(vulnerabilities)Precipitating(stressors)Perpetuating(maintaining)Protective(strengths)

Winters, N. C., Hanson, G., & Stoyanova, V. (2007). The case formulation in child and adolescent psychiatry. Child and Adolescent Psychiatric Clinics of North America, 16, 111-132.

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Health is Developmental-Contextual

http://www.beststart.org/

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Move beyond a deficit focused approach• The absence of mental health problems is not exactly

the same thing as good mental health

• If I were to ask you to describe how mentally healthy you are, what words would you use?

• Positive outcomes need to be defined by positive constructs

• If I were to ask you to describe what successful living means to you, what words would you use?

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A role for positive psychology• Most of the field of developmental disabilities has been

a deficit and pathology model (Dykens, 2006)

• Understanding what’s wrong with people only tells us so much about what contributes to people doing well (Seligman, 2002)• Happiness, flow, thriving beyond simply reducing

psychological suffering• In the general population, it is related to improved problem

solving, learning, health and longevity (Fredrickson, 2001)

• More work is needed• To inform operationalization and measurement, and

ultimately to treatment planning

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Mental health as an individual-contextual developmental process

Key ecological assets in school, family, and community:• Positive people• Physical and institutional

resources• Collective activity• Positive opportunities

Key individual strengths (including intentional self-regulation):• Academic• Cognitive• Social• Physical• Emotional

Positive Development:CompetenceConfidenceConnectionsCharacterCaring

Contribution to:SelfFamilyCommunityCivic society

Internalizing and externalizing problems (mental health problems)

+

-

Mueller… Lerner et al., 2011

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ORIGINAL PAPER

Thriving in Youth with Autism Spectrum Disorderand Intellectual Disability

Jonathan A. Weiss1• Priscilla Burnham Riosa1

! The Author(s) 2015. This article is published with open access at Springerlink.com

Abstract Most research on mental health in individualswith autism spectrum disorder (ASD) and intellectual dis-

ability (ID) has focused on deficits. We examined indi-

vidual (i.e., sociocommunicative skills, adaptive behavior,functional cognitive skills) and contextual (i.e., home,

school, and community participation) correlates of thriving

in 330 youth with ID and ASD compared to youth with IDonly, 11–22 years of age (M = 16.74, SD = 2.95). Youth

with ASD and ID were reported to thrive less than peers

with ID only. Group differences in sociocommunicativeability and school participation mediated the relationship

between ASD and less thriving. Research is needed to

further elucidate a developmental-contextual frameworkthat can inform interventions to promote mental health and

wellness in individuals with ASD and ID.

Keywords Autism spectrum disorder ! Intellectualdisability ! Special Olympics ! Thriving ! Mental health !Positive psychology ! Positive outcomes

Introduction

Individuals with autism spectrum disorder (ASD) and in-

tellectual disability (ID) have significant and pervasivesupport needs across many life domains, including educa-

tional, health, and community areas, and many struggle

with emotional and behavior problems (Mannion et al.

2014; Simonoff et al. 2008; White et al. 2009). In the mostrecent CDC (2014) report, 31 % of youth with ASD had

intellectual skills in the ID range (with another 23 % in the

borderline range), although estimates across studies rangewidely, from 26 to 68 % (CDC 2012; Fombonne 2005;

Yeargin-Allsopp et al. 2003). We also know a great deal

about the correlates of these pervasive needs, at individual(e.g., age, sex, diagnosis: Anagnostou et al. 2014), family

(e.g., parent stress: Witwer and Lecavalier 2008), and more

distal social levels (e.g., socio-economic status: Emersonand Hatton 2007). Understandably, research has largely

focused on these problem behaviors and the remediation of

negative outcomes, and we know far less about theseyouths’ strengths or how to promote positive outcomes,

such as happiness, satisfaction, or resilience (Dykens

2006).There is a role for positive psychology in identifying the

characteristics of wellbeing and the situations that promote

thriving, in a way that is more balanced than focusing solely onwhat is deficient (Gillham and Seligman 1999; Schalock

2004). Studies of positive or optimal outcomes of individualswith ASD are limited (Fein et al. 2013; Magiati et al. 2014).

Indeed, thriving is an important but almost altogether unused

term in the ASD research literature. Benson and Scales (2009)define thriving as ‘‘an individual’s pursuing a life path on

which individual or functionally-valued behaviors grow (e.g.,

character, confidence, caring) and move the person towardattainment of an ‘idealized personhood’ characterized by so-

cially or structurally-valued behaviors such as contribution to

self, family, community, and civil society (Lerner 2006)’’(p. 90). Thriving reflects both wellbeing and an upward de-

velopmental trajectory, the demonstration of continued growth

of knowledge and skills, and success in relationships withothers (Carver 1998), and ultimately, contributions in a

meaningful way to oneself and one’s environments according

& Jonathan A. Weissjonweiss@yorku.ca

1 Department of Psychology, York University, BehaviouralScience Building, 4700 Keele Street, Toronto, ON M3J 1P3,Canada

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J Autism Dev Disord

DOI 10.1007/s10803-015-2412-y

Mental health is not just about symptom alleviation

Competence

Confidence

Connectedness

Caring

Character

Contribution

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Components of thriving• Competence: My child has the skills to succeed in school, in

social situations with friends and adults, in play, and at home. My child knows how to behave and does what is needed to do well.

• Confidence: My child believes that he/she can succeed and do what is needed to do well in the family, in school, in social situations with friends and adults, in play and in other areas that are important to him/her (for example, sports, music, religious activities).

• Connectedness: My child has positive relationships with his/her parents, siblings, and other family members, and with friends, teachers, coaches, or mentors

Adapted with permission from the 4-H Study of Positive Youth Development. PI: Richard M. Lerner, Tufts University

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Components of thriving• Caring: My child cares about other people. He or she is concerned

about whether others have what they need (shows sympathy) and shows a sense of compassion (empathy). My child is both sympathetic and empathetic to others.

• Character: My child knows what is right and wrong; and does the right thing; My child is open to others’ perspectives and believes in social justice for all. My child is honest.

• Contribution to self/others/community: My child tries to do things to help the family, to help neighbors, and to help the community. My child tries to also help himself/herself by staying healthy (eating right, exercising, getting enough sleep).

Adapted with permission from the 4-H Study of Positive Youth Development. PI: Richard M. Lerner, Tufts University

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ASD status Thrivingc’

Cognitive ability

Sociocommunicative

Home participation

School participation

Community participation

a (p < .001)

a (p < .01)

b (p < .001)

b (p < .001)

b (p < .01)

b (p < .001)

Adaptive behaviour

a (p < .001)

Age

Gender

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We can work with the individual• In any one domain, or in many, we can struggle• It may also be our relative strength

Self-regulation

Cognitive

Academic Social

Physical

Emotional

Spiritual

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Lots of manuals• Facing Your Fears (Reaven, et

al., 2011). Paul Brookes.• Child anxiety disorders: A

family-based treatment manual for practitioners (Wood, et al., 2008). WW Norton & Co.

• Exploring Feelings (anger / anxiety) Attwood, 2004). Future Horizons.

• Coping Cat (Kendall & Hedtke, 2006). Workbook Pub.

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Where’s the evidence?

• Overall effectiveness of CBT• Recent systematic review and meta analysis (Weston,

Hodgekins & Langdon, 2016)• 48 studies met inclusion criteria• High risk of bias• 24 studies addressed affective problems

• 17 were < 18 years• 15 group based• 19 targeted anxiety• 14 were RCTs• Small to medium effect sizes, when using informant report or

clinician ratings

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Where’s the evidence?

• CBT reduces symptoms of anxiety• Most between 8 – 15 years of age

• Usually 14-16 sessions, but can go as high as 32

• 50% to 70% show considerable improvement

• We know little in terms of long term maintenance

• Participants without ID

• Perhaps anger (Sofronoff, Attwood, Hinton, & Levin, 2007)

• Maybe emotion regulation (

• ABA to shape behaviour, including reducing maladaptive behaviour, evidence base throughout development (Wong et al. 2013)

• Focus on shaping individual behaviour, but also address contingencies with environment and antecedent strategies can involve altering the environment

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Categories of issues and challenges reported by therapists

• Rigidity or B&W thinking• Pacing (needing to go slower)• Communication issues (e.g., literal

use of language)• Problems with therapeutic

relationship• Adaptive or including written

materials

• Difficulty recognizing and understanding emotions

• Co-occurring problems and problem identification

• Difficulties generalizing• Systemic factors• Not completing

homework• Sensory issues

Cooper, K., Loades, M., Russell, A. Adapting psychological therapies for autism. Research in Autism Spectrum Disorders, 45, 43-50.

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CBT to focus on emotion regulation

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An RCT to evaluate CBT targeting emotion regulation: SAS:OR

The Secret Agent Society: Operation Regulation was developed by Dr. Renae Beaumont (University of Queensland, Australia), based on the evidence-based Secret Agent Society

Support from the CIHR Chair in ASD Treatment and Care Research

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Review of Materials• Handbooks

• Cadet Handbook• Parent Handbook• Teacher Handouts• Facilitator Manual• Weekly therapist forms • Weekly parent/child feedback forms

• SAS-OR Session Materials:• Challenge Card • Manipulatives: Codecards, holder,

stress ball• Emotionometer and Stickers• Computer game

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Parent report of ER

• Overall emotion regulation in social situations (ERSSQ)• F (1, 57) = 12.94, p = .001, d = .96

• Pairwise• TI change, p < .001 vs WLC change, p =.59

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• Overall psychiatric symptom severity (ADIS Severity Score)

• F (1, 57) = 4.56, p = .04, d = .56

• Pairwise• TI change, p < .001 vs WLC change, p =.54

Clinician ratings

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Where’s the evidence?• Recent attention to mindfulness-based therapy (Cachia

et al. 2016)• 6 studies identified: 3 pre-post design, 2 multiple baseline

design, 1 employed an RCT

• Anxiety and thought problems in children• Aggression, well-being and social responsiveness in

teens • Reduced anxiety, depression and rumination in adults

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But

• CBT (ERP) vs. anxiety management therapy to address OCD in teens and adults with autism (Russell et al. 2013)

• CBT vs. non-directive person-centered counselling to address anxiety in teens with autism (Murphy et al. 2017)

• CBT vs. MBSR to address anxiety and depression in adults with autism (Sizoo & Kuiper, 2017)

• Group CBT vs. group recreational activities for adults with autism to improve quality of life, self-esteem and psychiatric symptoms (Hesselmark, Plenty & Beejerot, 2014)

• CBT vs. a social recreation program in adolescents with autism to address anxiety (Sung et al. 2011)

• CBT vs. treatment as usual to address anxiety disorders in adults with autism (Langdon et al. 2016)

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MYMind: Parent-youth concurrent treatmentYouth• awareness, self-control,

distress tolerance

Parents• impact of reactivity, attend

to youth non-judgmentally, acceptance of youth and their own feelings about parenting

Funded by Kids Brain Health Network (formerly NeuroDevNet)

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Where’s the evidence?• Psychotropic medication use (Jobski, Hofer, Hoffman &

Bachmann, 2016)• 47 studies• Some evidence for “ASD related irritability” children and

teens, ADHD medication for ADHD symptoms in ASD• Evidence for anti-depressants is very limited

• Many reviews seems to suggest the need for far more work and some form of caution in use of medication to address mental health problems (Dove et al., 2012; McPheeters et al., 2011)

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We can work with broader contexts• Context matters greatly

Social inclusion

Personal resources

Positive people

Collective activity

Positive opportunities

Positive places

Institutional resources

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Parental positive affect is a resiliency factor

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Positive peers

• Peer relationships or supports• The challenge of inclusive education (Rotheram-Fuller, Kasari,

Chamberlain & Locke, 2010)• Less likely to be accepted and fewer reciprocal friendships• More likely to be isolated or peripheral to social

relationships, with increasing isolation with grade

• “Promoting children with ASD’s skills in popular activities to share with peers in early childhood may be a key preventive intervention...”

• Social inclusion is the experience of belonging while participating in meaningful social activities

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Positive peers

Theme 1: ConnectednessTheme 2: Training in Sport

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Positive people• Mentorship

programs• SFU’s Autism

Mentorship Program

• York U’s Asperger Mentorship Program

Supporting students on the autism spectrum student mentor guidelines

By Catriona Mowat, Anna Cooper and Lee Gilson

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Positive opportunities

• Self-reported recreation activities as moderator of the relation of perceived stress and QoL in adults with autism (Bishop-Fitzpatrick, Smith DaWalt, Greenberg, & Mailick, 2017)

Bishop-Fitzpatrick, L., Smith DaWalt, L., Greenberg, J. S., & Mailick, M. R. (2017). Participation in recreational activities buffers the impact of perceived stress on quality of life in adults with autism spectrum disorder. Autism Research, 10(5), 973–982. http://doi.org/10.1002/aur.1753

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Working with communities

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http://bcove.me/0y5opj7c

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Final thoughts

n Skills to manage stress

n Good physical health and physical activity

n Sense of control over one’s life

n Reciprocal, non-stressful relationships

n Caregivers who are nurtured and supported to promote mental health in those they care for

n A safe place to live and learn

n An environment with limited stresses

n Meaningful activities in community

Individual Family

Environment Society

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• Identify at least two things you learned during this presentation to apply in your personal or professional life.

• Identify three steps you will take in the next month to implement what you learned in your personal or professional life

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Thank you! Questions?

Jonathan Weiss, PhD,CPsych

Associate Professor

Dept. of Psychology

York University

jonweiss@yorku.ca

Tel: 416-736-5891

http://www.tedxyorkusalon.orghttp://asdmentalhealth.blog.yorku.ca/

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References• Cachia, R. L., Anderson, A., & Moore, D. W. (2016). Mindfulness in Individuals with Autism

Spectrum Disorder: a Systematic Review and Narrative Analysis. Review Journal of Autism and Developmental Disorders, 3(2), 165–178.

• Dykens, E. M. (2006). Toward a positive psychology of mental retardation. American Journal of Orthopsychiatry, 76(2), 185–193.

• Mazefsky, C. A., Oswald, D. P., Day, T. N., Eack, S. M., & Minshew, N. J. (2012). ASD, a psychiatric disorder, or both? Psychiatric diagnoses in adolescents with high-functioning ASD. … Child & Adolescent …, 41(4), 516–523.

• Mueller, M. K., Phelps, E., Bowers, E. P., Agans, J. P., Urban, J. B., & Lerner, R. M. (2011). Youth development program participation and intentional self-regulation skills: Contextual and individual bases of pathways to positive youth development. Journal of Adolescence, 34(6), 1115–1125.

• Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric Disorders in Children With Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47(8), 921–929.

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References• Sofronoff, K., Attwood, T., Hinton, S., & Levin, I. (2007). A randomized controlled trial of a

cognitive behavioural intervention for anger management in children diagnosed with Asperger syndrome. Journal of Autism and Developmental Disorders, 37(7), 1203–1214.

• Taylor, J. L., & Seltzer, M. M. (2012). Developing a Vocational Index for Adults with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 42(12), 2669–2679.

• Tint, A., Thomson, K., & Weiss, J. A. (2017). A systematic literature review of the physical and psychosocial correlates of Special Olympics participation among individuals with intellectual disability. Journal of Intellectual Disability Research, 61(4), 301–324.

• Totsika, V., Hastings, R. P., Emerson, E., Berridge, D. M., & Lancaster, G. A. (2011). Behavior Problems at 5 Years of Age and Maternal Mental Health in Autism and Intellectual Disability. Journal of Abnormal Child Psychology, 39(8), 1137–1147.

• Rotheram-Fuller, E., Kasari, C., Chamberlain, B., & Locke, J. (2010). Social involvement of children with autism spectrum disorders in elementary school classrooms. Journal of Child Psychology and Psychiatry, 51(11), 1227–1234.

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References• Sung, M., Ooi, Y. P., Goh, T. J., Pathy, P., Fung, D. S. S., Ang, R. P., … Lam, C. M. (2011). Effects of

Cognitive-Behavioral Therapy on Anxiety in Children with Autism Spectrum Disorders: A Randomized Controlled Trial. Child Psychiatry & Human Development, 42(6), 634–649.

• Weiss, J. A. (2014). Transdiagnostic Case Conceptualization of Emotional Problems in Youth with ASD: An Emotion Regulation Approach. Clinical Psychology: Science and Practice, 21(4), 331–350.

• Weiss, J. A., & Burnham Riosa, P. (2015). Thriving in Youth with Autism Spectrum Disorder and Intellectual Disability. Journal of Autism and Developmental Disorders, 45(8), 2474–2486.

• Weiss, J. A., Cappadocia, M. C., Tint, A., & Pepler, D. (2015). Bullying Victimization, Parenting Stress, and Anxiety among Adolescents and Young Adults with Autism Spectrum Disorder. Autism Research, 8(6), 727–737.

• Weiss, J. A., Thomson, K., Burnham Riosa, P., Albaum, C., Chan, V., Maughan, A., … Black, K. (2018). A randomized waitlist-controlled trial of cognitive behavior therapy to improve emotion regulation in children with autism. Journal of Child Psychology and Psychiatry.

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(2017). Health Concerns and Health Service Utilization in a Population Cohort of Young Adults with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders.

• Weston, L., Hodgekins, J., & Langdon, P. E. (2016). Effectiveness of cognitive behavioural therapy with people who have autistic spectrum disorders: A systematic review and meta-analysis. Clinical Psychology Review.

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• Winters, N. C. (2007). The case formulation in child and adolescent psychiatry., 16(1), 111– 132.

• Wood, J. J., & Gadow, K. D. (2010). Exploring the Nature and Function of Anxiety in Youth with Autism Spectrum Disorders. Clinical Psychology: Science and Practice, 17(4), 281-292.