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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.
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Content note: Discussion of mental health issues, including suicide and other self-harm.
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Now: Mental Health Crises in #autistic youth. #IMFAR2017
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First speaker: Session chair L. Kalb: Psychometric Analysis of the Mental Health Crisis Assessment Scale in Youth with Autism Spectrum Disorder
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Psychometric Analysis of the Mental Health Crisis Assessment in [Autistic] Youth #IMFAR2017
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What = mental health crisis? Settled on APA def: acute disturbance of thought mood, behavior that requires immediate intervention #IMFAR2017
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Opening mental health in autistic young people talk with great definition – crisis= acute&resources to manage are not available. #IMFAR2017
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About 3/4 of #autistic kids have a co-occurring psychiatric diagnosis, another 1/4 have 2nd diagnosis. #IMFAR2017
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Three biggest medical concerns for #autistic kids: sleep disturbances, seizures, GI disturbances. #IMFAR2017
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There’s a lot of literature re probs for #autistic kids accessing psychiatric care. Have higher rate of using emergency services #IMFAR2017
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High level of need == high level of care #IMFAR2017
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Crises happen when ppl have acute psychiatric need but insufficient supports to get through them. #IMFAR2017
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“I’m in crisis research” response: “what’s a crisis?” Awesome, what about beyond kids? #IMFAR2017
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We don’t have enough crises measures, and none are designed for kids, and all require clinician administration. #IMFAR2017 #autism
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Measures used is a unique 28 question parent report measure, 3 sections. Section 1: Mental health symptoms, 14 items. #IMFAR2017
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2nd section: Select single most difficult behavior. 3rd section: acuity. #IMFAR2017
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In MH session hearing about the development of the Mental Health Crisis Assessment Scale – soon to be published in JCPP #IMFAR2017
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Great that ppl are developing a mental health crisis measure but STILL parent report. Can’t truly know someone else’s MH state! #IMFAR2017
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Developed measure through literature review, clinical experience, expert panel. (But not talking w/#autistic kids?) #IMFAR2017
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@Hopkins_WKC @JohnsHopkinsDMH student / faculty affiliate Luke Kalb presenting in his mental health crisis panel at #imfar2017 pic.twitter.com/OfXqP8zG9T
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[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.]
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The families in the study were recruited through the IAN network, and the survey was entirely conducted online. #IMFAR2017
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Also did clinician interview via phone with parents on subset re: crises in #autistic kids. #IMFAR2017
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This study does include adults, so it really would be more appropriate for those autistic adults to respond instead of parents #IMFAR2017
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Yes! We co-produced research with young autistic ppl about mental health:their voices essential http://knowyournormal.co.uk #IMFAR2017 @CRAE_IOE https://twitter.com/autism_women/status/863448997335257089 …
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Risk of danger to self and parental nervousness about MH crisis most significant factors in analysis of new measure #IMFAR2017
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“Danger to self,” and “nervous” tend to be two biggest risk factors in mental health crises in #autistic youth,. #IMFAR2017
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Study also looked at whether parents could manage child’s behaviour #IMFAR2017
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Did best to consider false positives with parent-reported risk factors. #IMFAR2017
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79% of incipient #autistic youth mental health crisis cases were, however, accurately detected through parent interview. #IMFAR2017
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Kids who met the cutoff on the crisis measure were 24x more likely to avail themselves of service. #IMFAR2017
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32% of families interviewed met the criteria for their #autistic kids being in mental health crisis. #IMFAR2017
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Ed. note: It is *absolutely necessary* to talk about parent stress in #autism families. But it is NOT OK to blame #autistic kids. #IMFAR2017
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Parent report on MH crisis accurate when comp to actual support use – & 32% of ppts were in crisis. Shocking stat&shows real need #IMFAR2017 pic.twitter.com/lhAytbWI8Thttps://t.co/lhAytbWI8Tpic.twitter.com/lhAytbWI8T
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[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.”]
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The evidence doesn’t suggest that this measure will help clinical outcomes given that the survey was online. Refining needed 1st. #IMFAR2017
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This really speaks that we need mental health services that are accessible to #autistic people #IMFAR2017 https://twitter.com/thinkingautism/status/863450013459927040 …
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Luther Kalb: Development of the Mental Health Assessment Scale, the only parent-report crisis assessment measure #IMFAR2017
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R. A. Vasa: Management of Mental Health Crises in Youth with and without Autism Spectrum Disorder: A National Survey of Child Psychiatrists
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Now: Management of Mental Health Crisis in #autistic kids, based on a national survey of child psychiatrists. Roma Vasa. #IMFAR2017
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About to hear from Vasa about how psychiatrists can manage MH crises in young people with and without ASD #IMFAR2017
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Vasa: treats #autistic kids in aggressive/SIB crises. What can parents/clinicians do? TPGA has ^^ advice: http://www.thinkingautismguide.com/2016/08/when-autistic-children-are-aggressive.html … #IMFAR2017
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Roma Vasa: How do providers manage mental health crises in youth with + without autism? #IMFAR2017
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Autistic kids in crises often end up not just in ER, but in boarding scenarios — up to 2 weeks. #IMFAR2017
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There is dire shortage of facilities that can support #autsitic kids in mental health crises in the US: Only **NINE** in country. #IMFAR2017
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We also have dire shortage of child psychiatrists in general, even fewer treat kids with DD. Some US counties have zero psychs. #IMFAR2017
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Wow. Dark blue = NO child psychiatrists in a county. USA, you’re one of the richest countries in the world. This is shocking. #IMFAR2017 pic.twitter.com/W5WJ7Wa8kC
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[image above: Slide of a choropleth map demonstrating how few child psychiatrists are available, by county, in the United States.]
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Goal of study: examine how child psychiatrists manage mental health crisis in youth with ASD compared to non-#autistic. #IMFAR2017
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Something to consider, an undiagnosed #autistic in crisis #IMFAR2017 https://twitter.com/thinkingautism/status/863452381454807041 …
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Factors: Will psychs see kids in crises? Do they feel prepared? etc. 10 question survey total #IMFAR2017
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Survey: Psychs who will see #autistic kids: Do they accept kids in crisis, is office designed for crisis, keep open appointments? #IMFAR2017
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Survey: preparedness: Is psych comfortable treating kids in crisis as outpatient, do they have proactive emergency plan. #IMFAR2017
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Are they accessible for multiple disabilities, for sensory issues amd allergies? #IMFAR2017 https://twitter.com/thinkingautism/status/863453487786467328 …
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Survey: access to external resources to manage crises: access to other professionals, access to crisis evaluation centers, etc. #IMFAR2017
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Note: Survey has two different groups: One of psychs who routinely treat #autistic kids, 2nd those who did NOT usually do so. #IMFAR2017
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Child psychs who usu. treated #autistic kids tended to keep open apps available for crises, but did less emergency planning etc. #IMFAR2017
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Good: Many psychs see & accept ASD kids in practice, but BAD: emergency & multidisciplinary resources. #IMFAR2017
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Vasa highlights need for training for police: links to our research in UK http://link.springer.com/article/10.1007/s10803-016-2729-1 … #IMFAR2017
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Turns out, psychs with more experience w/#autistic kids less likely to refer to ER or police, worried about patient mistreatment. #IMFAR2017
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Vasa also highlights autism training need for doctors – YES! https://theconversation.com/gps-urgently-need-training-on-autism-77301 … #IMFAR2017 – not just psychiatrists but all doctors
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Future needs: need more first responder training for #autistic kids in crises, more community-based crisis teams, & *more psychs* #IMFAR2017
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‘Good news’ that psychiatrists ‘ready and willing’ to see autistic children & yp people? Sad that the ‘good news’ bar set so low #IMFAR2017
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Vasa wants to train responders, professionals, enforcement, create intervention teams, increase mental health prof, crisis plans #IMFAR2017
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Short term: need to train child psychiatrists to develop crisis prevention and intervention plans for #autistic kids. #IMFAR2017
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We need to have our #autistic kids meet local law enforcement, identity facilities, know what yr insurance coverage is. #IMFAR2017 #autism
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Roma Vasa: 1. Clinicians who see children w/ autism in crisis are less likely to coordinate with other healthcare professionals #IMFAR2017
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Great to hear Rosa Vasa talk about need for emergency services to be trained in #autism: v important in relation to mental health #IMFAR2017
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Roma Vasa: 2. Because there is a shortage of other healthcare professionals trained in autism, due to lack of resources #IMFAR2017
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Now Siegel presenting on talking to autistic young people about death & suicide. Looking forward to this #IMFAR2017
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Now: Pediatrican/child psych Siegel: re pilot study on clinical correlates for talking about death & suicide in #autistic kids. #IMFAR2017
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Siegel on Talking on Death or Suicide #IMFAR2017
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Siegel runs one of few (now 13, not 9) inpatient crises centers in US that can support #autistic kids in mental health crises. #IMFAR2017
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Siegel: increased suicide ideation and success rates in autistic people. Worrying and upsetting. #IMFAR2017
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Suicidal ideation is higher in #autistic youth, based on studies & clinical observation. So is suicide itself. 🙁 #IMFAR2017
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Mentioning the Hirvikoski 2016 study on significantly contribute to higher rate of premature mortality #IMFAR2017
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Mood & anxiety disorders are suicide/suicidal ideation risk factors, & #autistic kids tend to have higher rate of those factors. #IMFAR2017
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There are no validated screening methods for suicidal ideation in #autistic kids WHAT. #IMFAR2017
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*that suicide significantly contributes to #IMFAR2017 https://twitter.com/autism_women/status/863458106428211200 …
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Siegel highlights important work from @Sarah_CovUni on suicidal ideation in autistic adults https://www.ncbi.nlm.nih.gov/pubmed/26360578 #IMFAR2017
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M.Siegel: suicide &autism – shocking stats: suicide contributes to increased premature mortality x7 vs non-ASC Hirvikoski, 2016 #IMFAR2017
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Clinicians have a hard time teasing apart SIB behavior from suicidal ideation behavior. (Maybe survey #autistic ppl?) #IMFAR2017
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Problems with #autistic self-reporting include problems with identifying self-states (alexithymia), #IMFAR2017
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Also, intense interests in horror/violent media may be #autism trait rather than indication of suicidal ideation. #IMFAR2017
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Concerns around possible under report/false -ve/false +ve in autistic young people problem of qnres mistaking traits for ideation #IMFAR2017
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Talking about interests and hobbies may score as false positives, same with dramatic statements #IMFAR2017
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Again, there’s a conflation with repetitive and SIB behavior, rarely interpreted as suicidal ideation or intent. #IMFAR2017
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How do we screen for suicidal ideation across verbal and intellectual ability in #autistic kids? #IMFAR2017
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Patience, accessibility structured studies #IMFAR2017 https://twitter.com/thinkingautism/status/863459483606933504 …
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Ask us!!! Ask us!!! Ask us!!!! Have us structure the study and interpret results! #IMFAR2017 https://twitter.com/thinkingautism/status/863458836211838976 …
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@autism_women We’ve recently done that on a #mentalhealth project – the input of the autistic ppl co-designing the research was invaluable. #IMFAR2017
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@autism_women Yes! Ask us! #IMFAR2017
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We’re the experts, #IMFAR2017. Work with us. Please?
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If #autistic people screen pos or negative, how do we know if these are false results? What are gold screening standards? #IMFAR2017
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Talking about death isn’t necessarily suicidal risk factor, for instance my son talking about his grandpa dying 10 yrs ago. #IMFAR2017
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Matthew Siegel: Challenges measuring suicidal ideation in autism #IMFAR2017
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Siegel: Clinicians need population-specific validated tools to guide them in assessing suicide risk for #autistic kids. #IMFAR2017
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Dr. Siegel at #IMFAR2017: ADHD in autistic individuals tends to have a protective effect against suicide (opposite of non-autistics).
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Matthew Siegel: Suicidal ideation in autism: Need population-specific tools #IMFAR2017
