IMFAR 2017: Mental Health Crises in Youth with Autism Spectrum Disorder

IMFAR 2017: Mental Health Crises in Youth with Autism Spectrum Disorder

Shannon Rosa

Sat, May 13 2017 21:08:54

IMFAR 2017: Mental Health Crises in Youth with Autism Spectrum Disorder

Clinical experience suggests such crises occur frequently among individuals with an Autism Spectrum Disorder (ASD). Despite the scope and impact of this issue, there is no systematic research on the measurement or management of mental health crises in individuals with ASD.

  1. Content note: Discussion of mental health issues, including suicide and other self-harm.

  2. thinkingautism


    Now: Mental Health Crises in #autistic youth. #IMFAR2017

    Sat, May 13 2017 17:31:17

  3. First speaker: Session chair L. Kalb: Psychometric Analysis of the Mental Health Crisis Assessment Scale in Youth with Autism Spectrum Disorder

  4. autism_women


    Psychometric Analysis of the Mental Health Crisis Assessment in [Autistic] Youth #IMFAR2017

    Sat, May 13 2017 17:33:36

  5. thinkingautism


    What = mental health crisis? Settled on APA def: acute disturbance of thought mood, behavior that requires immediate intervention #IMFAR2017

    Sat, May 13 2017 17:33:14

  6. SedgewickF

    Felicity Sedgewick@SedgewickF

    Opening mental health in autistic young people talk with great definition – crisis= acute&resources to manage are not available. #IMFAR2017

    Sat, May 13 2017 17:34:31

  7. thinkingautism


    About 3/4 of #autistic kids have a co-occurring psychiatric diagnosis, another 1/4 have 2nd diagnosis. #IMFAR2017

    Sat, May 13 2017 17:33:51

  8. thinkingautism


    Three biggest medical concerns for #autistic kids: sleep disturbances, seizures, GI disturbances. #IMFAR2017

    Sat, May 13 2017 17:34:21

  9. thinkingautism


    There’s a lot of literature re probs for #autistic kids accessing psychiatric care. Have higher rate of using emergency services #IMFAR2017

    Sat, May 13 2017 17:35:02

  10. autism_women


    High level of need == high level of care #IMFAR2017

    Sat, May 13 2017 17:35:06

  11. thinkingautism


    Crises happen when ppl have acute psychiatric need but insufficient supports to get through them. #IMFAR2017

    Sat, May 13 2017 17:35:41

  12. autism_women


    “I’m in crisis research” response: “what’s a crisis?” Awesome, what about beyond kids? #IMFAR2017

    Sat, May 13 2017 17:36:05

  13. thinkingautism


    We don’t have enough crises measures, and none are designed for kids, and all require clinician administration. #IMFAR2017 #autism

    Sat, May 13 2017 17:36:08

  14. thinkingautism


    Measures used is a unique 28 question parent report measure, 3 sections. Section 1: Mental health symptoms, 14 items. #IMFAR2017

    Sat, May 13 2017 17:37:20

  15. thinkingautism


    2nd section: Select single most difficult behavior. 3rd section: acuity. #IMFAR2017

    Sat, May 13 2017 17:37:44

  16. LauraMayCrane

    Laura Crane@LauraMayCrane

    In MH session hearing about the development of the Mental Health Crisis Assessment Scale – soon to be published in JCPP #IMFAR2017

    Sat, May 13 2017 17:37:35

  17. SedgewickF

    Felicity Sedgewick@SedgewickF

    Great that ppl are developing a mental health crisis measure but STILL parent report. Can’t truly know someone else’s MH state! #IMFAR2017

    Sat, May 13 2017 17:38:13

  18. thinkingautism


    Developed measure through literature review, clinical experience, expert panel. (But not talking w/#autistic kids?) #IMFAR2017

    Sat, May 13 2017 17:38:35

  19. c_uvz14u0aat2gp-9999408

    @Hopkins_WKC @JohnsHopkinsDMH student / faculty affiliate Luke Kalb presenting in his mental health crisis panel at #imfar2017

    M Daniele Fallin@FallinDani


    Sat, May 13 2017 17:38:56

  20. [image above: White man talking at a podium, next to a slide with a white background with the title “Measurement Gap” and the bullet points -Few Crisis Measures -None are designed for children, much less those with a developmental disability, -All require clinician administration -Single Reporting and limited psychometric testing.]

  21. thinkingautism


    The families in the study were recruited through the IAN network, and the survey was entirely conducted online. #IMFAR2017

    Sat, May 13 2017 17:39:11

  22. thinkingautism


    Also did clinician interview via phone with parents on subset re: crises in #autistic kids. #IMFAR2017

    Sat, May 13 2017 17:40:08

  23. autism_women


    This study does include adults, so it really would be more appropriate for those autistic adults to respond instead of parents #IMFAR2017

    Sat, May 13 2017 17:40:57

  24. LauraMayCrane

    Laura Crane@LauraMayCrane

    Yes! We co-produced research with young autistic ppl about mental health:their voices essential  #IMFAR2017 @CRAE_IOE 

    Sat, May 13 2017 17:43:23

  25. SedgewickF

    Felicity Sedgewick@SedgewickF

    Risk of danger to self and parental nervousness about MH crisis most significant factors in analysis of new measure #IMFAR2017

    Sat, May 13 2017 17:42:28

  26. thinkingautism


    “Danger to self,” and “nervous” tend to be two biggest risk factors in mental health crises in #autistic youth,. #IMFAR2017

    Sat, May 13 2017 17:42:34

  27. autism_women


    Study also looked at whether parents could manage child’s behaviour #IMFAR2017

    Sat, May 13 2017 17:43:11

  28. thinkingautism


    Did best to consider false positives with parent-reported risk factors. #IMFAR2017

    Sat, May 13 2017 17:44:05

  29. thinkingautism


    79% of incipient #autistic youth mental health crisis cases were, however, accurately detected through parent interview. #IMFAR2017

    Sat, May 13 2017 17:44:59

  30. thinkingautism


    Kids who met the cutoff on the crisis measure were 24x more likely to avail themselves of service. #IMFAR2017

    Sat, May 13 2017 17:45:51

  31. thinkingautism


    32% of families interviewed met the criteria for their #autistic kids being in mental health crisis. #IMFAR2017

    Sat, May 13 2017 17:46:28

  32. thinkingautism


    Ed. note: It is *absolutely necessary* to talk about parent stress in #autism families. But it is NOT OK to blame #autistic kids. #IMFAR2017

    Sat, May 13 2017 17:47:18

  33. Parent report on MH crisis accurate when comp to actual support use – & 32% of ppts were in crisis. Shocking stat&shows real need #IMFAR2017

    Felicity Sedgewick@SedgewickF


    Sat, May 13 2017 17:47:38

  34. [image above: Two slides featuring charts. The left-hand slide is a bar chart titled “Urgent Psychiatric Service Use” and the second is a pie chart titled “Prevalence.”]

  35. thinkingautism


    The evidence doesn’t suggest that this measure will help clinical outcomes given that the survey was online. Refining needed 1st. #IMFAR2017

    Sat, May 13 2017 17:49:27

  36. autism_women


    This really speaks that we need mental health services that are accessible to #autistic people #IMFAR2017 

    Sat, May 13 2017 17:49:31

  37. AbiElizabeth15

    Abigail Thompson@AbiElizabeth15

    Luther Kalb: Development of the Mental Health Assessment Scale, the only parent-report crisis assessment measure #IMFAR2017

    Sat, May 13 2017 17:49:57

  38. R. A. Vasa: Management of Mental Health Crises in Youth with and without Autism Spectrum Disorder: A National Survey of Child Psychiatrists

  39. thinkingautism


    Now: Management of Mental Health Crisis in #autistic kids, based on a national survey of child psychiatrists. Roma Vasa. #IMFAR2017

    Sat, May 13 2017 17:50:19

  40. SedgewickF

    Felicity Sedgewick@SedgewickF

    About to hear from Vasa about how psychiatrists can manage MH crises in young people with and without ASD #IMFAR2017

    Sat, May 13 2017 17:51:49

  41. thinkingautism


    Vasa: treats #autistic kids in aggressive/SIB crises. What can parents/clinicians do? TPGA has ^^ advice:  #IMFAR2017

    Sat, May 13 2017 17:52:01

  42. AbiElizabeth15

    Abigail Thompson@AbiElizabeth15

    Roma Vasa: How do providers manage mental health crises in youth with + without autism? #IMFAR2017

    Sat, May 13 2017 17:52:23

  43. thinkingautism


    Autistic kids in crises often end up not just in ER, but in boarding scenarios — up to 2 weeks. #IMFAR2017

    Sat, May 13 2017 17:52:58

  44. thinkingautism


    There is dire shortage of facilities that can support #autsitic kids in mental health crises in the US: Only **NINE** in country. #IMFAR2017

    Sat, May 13 2017 17:53:42

  45. thinkingautism


    We also have dire shortage of child psychiatrists in general, even fewer treat kids with DD. Some US counties have zero psychs. #IMFAR2017

    Sat, May 13 2017 17:54:24

  46. c_uzb34vwaegmt-8949139

    Wow. Dark blue = NO child psychiatrists in a county. USA, you’re one of the richest countries in the world. This is shocking. #IMFAR2017

    Felicity Sedgewick@SedgewickF


    Sat, May 13 2017 17:54:44

  47. [image above: Slide of a choropleth map demonstrating how few child psychiatrists are available, by county, in the United States.]

  48. thinkingautism


    Goal of study: examine how child psychiatrists manage mental health crisis in youth with ASD compared to non-#autistic. #IMFAR2017

    Sat, May 13 2017 17:55:20

  49. autism_women


    Something to consider, an undiagnosed #autistic in crisis #IMFAR2017 

    Sat, May 13 2017 17:55:59

  50. thinkingautism


    Factors: Will psychs see kids in crises? Do they feel prepared? etc. 10 question survey total #IMFAR2017

    Sat, May 13 2017 17:55:59

  51. thinkingautism


    Survey: Psychs who will see #autistic kids: Do they accept kids in crisis, is office designed for crisis, keep open appointments? #IMFAR2017

    Sat, May 13 2017 17:58:48

  52. thinkingautism


    Survey: preparedness: Is psych comfortable treating kids in crisis as outpatient, do they have proactive emergency plan. #IMFAR2017

    Sat, May 13 2017 17:59:45

  53. autism_women


    Are they accessible for multiple disabilities, for sensory issues amd allergies? #IMFAR2017 

    Sat, May 13 2017 18:00:49

  54. thinkingautism


    Survey: access to external resources to manage crises: access to other professionals, access to crisis evaluation centers, etc. #IMFAR2017

    Sat, May 13 2017 18:00:18

  55. thinkingautism


    Note: Survey has two different groups: One of psychs who routinely treat #autistic kids, 2nd those who did NOT usually do so. #IMFAR2017

    Sat, May 13 2017 18:01:07

  56. thinkingautism


    Child psychs who usu. treated #autistic kids tended to keep open apps available for crises, but did less emergency planning etc. #IMFAR2017

    Sat, May 13 2017 18:05:43

  57. thinkingautism


    Good: Many psychs see & accept ASD kids in practice, but BAD: emergency & multidisciplinary resources. #IMFAR2017

    Sat, May 13 2017 18:07:12

  58. LauraMayCrane

    Laura Crane@LauraMayCrane

    Vasa highlights need for training for police: links to our research in UK  #IMFAR2017

    Sat, May 13 2017 18:07:54

  59. thinkingautism


    Turns out, psychs with more experience w/#autistic kids less likely to refer to ER or police, worried about patient mistreatment. #IMFAR2017

    Sat, May 13 2017 18:08:26

  60. LauraMayCrane

    Laura Crane@LauraMayCrane

    Vasa also highlights autism training need for doctors – YES!  #IMFAR2017 – not just psychiatrists but all doctors

    Sat, May 13 2017 18:09:09

  61. thinkingautism


    Future needs: need more first responder training for #autistic kids in crises, more community-based crisis teams, & *more psychs* #IMFAR2017

    Sat, May 13 2017 18:09:30

  62. DrJGalpin

    J Galpin@DrJGalpin

    ‘Good news’ that psychiatrists ‘ready and willing’ to see autistic children & yp people? Sad that the ‘good news’ bar set so low #IMFAR2017

    Sat, May 13 2017 18:10:30

  63. autism_women


    Vasa wants to train responders, professionals, enforcement, create intervention teams, increase mental health prof, crisis plans #IMFAR2017

    Sat, May 13 2017 18:10:51

  64. thinkingautism


    Short term: need to train child psychiatrists to develop crisis prevention and intervention plans for #autistic kids. #IMFAR2017

    Sat, May 13 2017 18:10:34

  65. thinkingautism


    We need to have our #autistic kids meet local law enforcement, identity facilities, know what yr insurance coverage is. #IMFAR2017 #autism

    Sat, May 13 2017 18:11:31

  66. AbiElizabeth15

    Abigail Thompson@AbiElizabeth15

    Roma Vasa: 1. Clinicians who see children w/ autism in crisis are less likely to coordinate with other healthcare professionals #IMFAR2017

    Sat, May 13 2017 18:11:38

  67. LauraMayCrane

    Laura Crane@LauraMayCrane

    Great to hear Rosa Vasa talk about need for emergency services to be trained in #autism: v important in relation to mental health #IMFAR2017

    Sat, May 13 2017 18:11:39

  68. AbiElizabeth15

    Abigail Thompson@AbiElizabeth15

    Roma Vasa: 2. Because there is a shortage of other healthcare professionals trained in autism, due to lack of resources #IMFAR2017

    Sat, May 13 2017 18:12:22

  69. M. Siegel: Talking about Death or Suicide: Prevalence and Clinical Correlates in Youth with Autism Spectrum Disorder

  70. SedgewickF

    Felicity Sedgewick@SedgewickF

    Now Siegel presenting on talking to autistic young people about death & suicide. Looking forward to this #IMFAR2017

    Sat, May 13 2017 18:13:55

  71. thinkingautism


    Now: Pediatrican/child psych Siegel: re pilot study on clinical correlates for talking about death & suicide in #autistic kids. #IMFAR2017

    Sat, May 13 2017 18:14:07

  72. autism_women


    Siegel on Talking on Death or Suicide #IMFAR2017

    Sat, May 13 2017 18:14:55

  73. thinkingautism


    Siegel runs one of few (now 13, not 9) inpatient crises centers in US that can support #autistic kids in mental health crises. #IMFAR2017

    Sat, May 13 2017 18:14:40

  74. SedgewickF

    Felicity Sedgewick@SedgewickF

    Siegel: increased suicide ideation and success rates in autistic people. Worrying and upsetting. #IMFAR2017

    Sat, May 13 2017 18:15:46

  75. thinkingautism


    Suicidal ideation is higher in #autistic youth, based on studies & clinical observation. So is suicide itself. 🙁 #IMFAR2017

    Sat, May 13 2017 18:15:59

  76. autism_women


    Mentioning the Hirvikoski 2016 study on significantly contribute to higher rate of premature mortality #IMFAR2017

    Sat, May 13 2017 18:17:09

  77. thinkingautism


    Mood & anxiety disorders are suicide/suicidal ideation risk factors, & #autistic kids tend to have higher rate of those factors. #IMFAR2017

    Sat, May 13 2017 18:17:27

  78. thinkingautism


    There are no validated screening methods for suicidal ideation in #autistic kids WHAT. #IMFAR2017

    Sat, May 13 2017 18:18:17

  79. autism_women


    *that suicide significantly contributes to #IMFAR2017 

    Sat, May 13 2017 18:18:37

  80. LauraMayCrane

    Laura Crane@LauraMayCrane

    Siegel highlights important work from @Sarah_CovUni on suicidal ideation in autistic adults  #IMFAR2017

    Sat, May 13 2017 18:19:05

  81. CRAE_IOE


    M.Siegel: suicide &autism – shocking stats: suicide contributes to increased premature mortality x7 vs non-ASC Hirvikoski, 2016 #IMFAR2017

    Sat, May 13 2017 18:19:05

  82. thinkingautism


    Clinicians have a hard time teasing apart SIB behavior from suicidal ideation behavior. (Maybe survey #autistic ppl?) #IMFAR2017

    Sat, May 13 2017 18:20:03

  83. thinkingautism


    Problems with #autistic self-reporting include problems with identifying self-states (alexithymia), #IMFAR2017

    Sat, May 13 2017 18:20:45

  84. thinkingautism


    Also, intense interests in horror/violent media may be #autism trait rather than indication of suicidal ideation. #IMFAR2017

    Sat, May 13 2017 18:21:21

  85. SedgewickF

    Felicity Sedgewick@SedgewickF

    Concerns around possible under report/false -ve/false +ve in autistic young people problem of qnres mistaking traits for ideation #IMFAR2017

    Sat, May 13 2017 18:21:55

  86. autism_women


    Talking about interests and hobbies may score as false positives, same with dramatic statements #IMFAR2017

    Sat, May 13 2017 18:22:02

  87. thinkingautism


    Again, there’s a conflation with repetitive and SIB behavior, rarely interpreted as suicidal ideation or intent. #IMFAR2017

    Sat, May 13 2017 18:22:15

  88. thinkingautism


    How do we screen for suicidal ideation across verbal and intellectual ability in #autistic kids? #IMFAR2017

    Sat, May 13 2017 18:22:37

  89. autism_women


    Patience, accessibility structured studies #IMFAR2017 

    Sat, May 13 2017 18:24:51

  90. autism_women


    Ask us!!! Ask us!!! Ask us!!!! Have us structure the study and interpret results! #IMFAR2017 

    Sat, May 13 2017 18:23:14

  91. LauraMayCrane

    Laura Crane@LauraMayCrane

    @autism_women We’ve recently done that on a #mentalhealth project – the input of the autistic ppl co-designing the research was invaluable. #IMFAR2017

    Sat, May 13 2017 18:26:51

  92. karamina

    Rachael Lucas@karamina

    @autism_women Yes! Ask us! #IMFAR2017

    Sat, May 13 2017 18:24:43

  93. liveotherwise

    Jax Blunt@liveotherwise

    We’re the experts, #IMFAR2017. Work with us. Please?

    Sat, May 13 2017 18:25:02

  94. thinkingautism


    If #autistic people screen pos or negative, how do we know if these are false results? What are gold screening standards? #IMFAR2017

    Sat, May 13 2017 18:23:22

  95. thinkingautism


    Talking about death isn’t necessarily suicidal risk factor, for instance my son talking about his grandpa dying 10 yrs ago. #IMFAR2017

    Sat, May 13 2017 18:27:37

  96. AbiElizabeth15

    Abigail Thompson@AbiElizabeth15

    Matthew Siegel: Challenges measuring suicidal ideation in autism #IMFAR2017

    Sat, May 13 2017 18:29:46

  97. thinkingautism


    Siegel: Clinicians need population-specific validated tools to guide them in assessing suicide risk for #autistic kids. #IMFAR2017

    Sat, May 13 2017 18:33:17

  98. JHMarble

    John Marble@JHMarble

    Dr. Siegel at #IMFAR2017: ADHD in autistic individuals tends to have a protective effect against suicide (opposite of non-autistics).

    Sat, May 13 2017 18:33:21

  99. AbiElizabeth15

    Abigail Thompson@AbiElizabeth15

    Matthew Siegel: Suicidal ideation in autism: Need population-specific tools #IMFAR2017

    Sat, May 13 2017 18:33:47