TY - JOUR
T1 - “I wouldn’t know where to start”
T2 - Perspectives from clinicians, agency leaders, and autistic adults on improving community mental health services for autistic adults
AU - Maddox, Brenna B.
AU - Crabbe, Samantha
AU - Beidas, Rinad S.
AU - Brookman-Frazee, Lauren
AU - Cannuscio, Carolyn C.
AU - Miller, Judith S.
AU - Nicolaidis, Christina
AU - Mandell, David S.
N1 - Funding Information:
The authors are grateful to their community partners and the study participants. Portions of these findings were presented at the 2018 International Society for Autism Research Annual Meeting and the 2019 Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities. The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the NIMH F32MH111166 (PI: Maddox) and FAR Fund (PI: Maddox).
Funding Information:
Most autistic adults struggle with mental health problems, such as anxiety and depression. However, they often have trouble finding effective mental health treatment in their community. The goal of this study was to identify ways to improve community mental health services for autistic adults. We interviewed 22 autistic adults with mental healthcare experience, 44 community mental health clinicians (outpatient therapists, case managers, and intake coordinators), and 11 community mental health agency leaders in the United States. Our participants identified a variety of barriers to providing quality mental healthcare to autistic adults. Across all three groups, most of the reported barriers involved clinicians’ limited knowledge, lack of experience, poor competence, and low confidence working with autistic adults. All three groups also discussed the disconnect between the community mental health and developmental disabilities systems and the need to improve communication between these two systems. Further efforts are needed to train clinicians and provide follow-up consultation to work more effectively with autistic adults. A common suggestion from all three groups was to include autistic adults in creating and delivering the clinician training. The autistic participants provided concrete recommendations for clinicians, such as consider sensory issues, slow the pace, incorporate special interests, use direct language, and set clear expectations. Our findings also highlight a need for community education about co-occurring psychiatric conditions with autism and available treatments, in order to increase awareness about treatment options. adults autism spectrum disorder community mental health training qualitative methods National Institute of Mental Health https://doi.org/10.13039/100000025 F32MH111166 FAR Fund edited-state corrected-proof The authors are grateful to their community partners and the study participants. Portions of these findings were presented at the 2018 International Society for Autism Research Annual Meeting and the 2019 Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities. Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the NIMH F32MH111166 (PI: Maddox) and FAR Fund (PI: Maddox). ORCID iDs Brenna B Maddox https://orcid.org/0000-0002-6228-0509 Christina Nicolaidis https://orcid.org/0000-0002-9394-5956
Publisher Copyright:
© The Author(s) 2019.
PY - 2020/5/1
Y1 - 2020/5/1
N2 - Most autistic adults struggle with mental health problems, and traditional mental health services generally do not meet their needs. This study used qualitative methods to identify ways to improve community mental health services for autistic adults for treatment of their co-occurring psychiatric conditions. We conducted semistructured, open-ended interviews with 22 autistic adults with mental healthcare experience, 44 community mental health clinicians, and 11 community mental health agency leaders in the United States. The participants identified clinician-, client-, and systems-level barriers and facilitators to providing quality mental healthcare to autistic adults. Across all three stakeholder groups, most of the reported barriers involved clinicians’ limited knowledge, lack of experience, poor competence, and low confidence working with autistic adults. All three groups also discussed the disconnect between the community mental health and developmental disabilities systems, which can result in autistic adults being turned away from services when they contact the mental health division and disclose their autism diagnosis during the intake process. Further efforts are needed to train clinicians to work more effectively with autistic adults and to increase coordination between the mental health and developmental disabilities systems. Lay Abstract: Most autistic adults struggle with mental health problems, such as anxiety and depression. However, they often have trouble finding effective mental health treatment in their community. The goal of this study was to identify ways to improve community mental health services for autistic adults. We interviewed 22 autistic adults with mental healthcare experience, 44 community mental health clinicians (outpatient therapists, case managers, and intake coordinators), and 11 community mental health agency leaders in the United States. Our participants identified a variety of barriers to providing quality mental healthcare to autistic adults. Across all three groups, most of the reported barriers involved clinicians’ limited knowledge, lack of experience, poor competence, and low confidence working with autistic adults. All three groups also discussed the disconnect between the community mental health and developmental disabilities systems and the need to improve communication between these two systems. Further efforts are needed to train clinicians and provide follow-up consultation to work more effectively with autistic adults. A common suggestion from all three groups was to include autistic adults in creating and delivering the clinician training. The autistic participants provided concrete recommendations for clinicians, such as consider sensory issues, slow the pace, incorporate special interests, use direct language, and set clear expectations. Our findings also highlight a need for community education about co-occurring psychiatric conditions with autism and available treatments, in order to increase awareness about treatment options.
AB - Most autistic adults struggle with mental health problems, and traditional mental health services generally do not meet their needs. This study used qualitative methods to identify ways to improve community mental health services for autistic adults for treatment of their co-occurring psychiatric conditions. We conducted semistructured, open-ended interviews with 22 autistic adults with mental healthcare experience, 44 community mental health clinicians, and 11 community mental health agency leaders in the United States. The participants identified clinician-, client-, and systems-level barriers and facilitators to providing quality mental healthcare to autistic adults. Across all three stakeholder groups, most of the reported barriers involved clinicians’ limited knowledge, lack of experience, poor competence, and low confidence working with autistic adults. All three groups also discussed the disconnect between the community mental health and developmental disabilities systems, which can result in autistic adults being turned away from services when they contact the mental health division and disclose their autism diagnosis during the intake process. Further efforts are needed to train clinicians to work more effectively with autistic adults and to increase coordination between the mental health and developmental disabilities systems. Lay Abstract: Most autistic adults struggle with mental health problems, such as anxiety and depression. However, they often have trouble finding effective mental health treatment in their community. The goal of this study was to identify ways to improve community mental health services for autistic adults. We interviewed 22 autistic adults with mental healthcare experience, 44 community mental health clinicians (outpatient therapists, case managers, and intake coordinators), and 11 community mental health agency leaders in the United States. Our participants identified a variety of barriers to providing quality mental healthcare to autistic adults. Across all three groups, most of the reported barriers involved clinicians’ limited knowledge, lack of experience, poor competence, and low confidence working with autistic adults. All three groups also discussed the disconnect between the community mental health and developmental disabilities systems and the need to improve communication between these two systems. Further efforts are needed to train clinicians and provide follow-up consultation to work more effectively with autistic adults. A common suggestion from all three groups was to include autistic adults in creating and delivering the clinician training. The autistic participants provided concrete recommendations for clinicians, such as consider sensory issues, slow the pace, incorporate special interests, use direct language, and set clear expectations. Our findings also highlight a need for community education about co-occurring psychiatric conditions with autism and available treatments, in order to increase awareness about treatment options.
KW - adults
KW - autism spectrum disorder
KW - community mental health
KW - qualitative methods
KW - training
UR - http://www.scopus.com/inward/record.url?scp=85070218465&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85070218465&partnerID=8YFLogxK
U2 - 10.1177/1362361319882227
DO - 10.1177/1362361319882227
M3 - Article
C2 - 31674198
AN - SCOPUS:85070218465
VL - 24
SP - 919
EP - 930
JO - Autism
JF - Autism
SN - 1362-3613
IS - 4
ER -