"if He Has it, We Know What to Do": Parent Perspectives on Familial Risk for Autism Spectrum Disorder

Katherine E. MacDuffie; Lauren Turner-Brown; Annette M. Estes; Benjamin S. Wilfond; Stephen R. Dager; Juhi Pandey; Lonnie Zwaigenbaum; Kelly N. Botteron; John R. Pruett; Joseph Piven; Holly L. Peay; J. Piven; H. C. Hazlett; C. Chappell; S. Dager; A. Estes; D. Shaw; K. Botteron; R. McKinstry; J. Constantino; J. Pruett; R. Schultz; J. Pandey; S. Paterson; J. Ellison; J. Wolff; A. C. Evans; D. L. Collins; G. B. Pike; V. Fonov; P. Kostopoulos; S. Das; L. MacIntyre; G. Gerig; M. Styner; H. Gu

doi:10.1093/jpepsy/jsz076

"if He Has it, We Know What to Do": Parent Perspectives on Familial Risk for Autism Spectrum Disorder

Katherine E. MacDuffie, Lauren Turner-Brown, Annette M. Estes, Benjamin S. Wilfond, Stephen R. Dager, Juhi Pandey, Lonnie Zwaigenbaum, Kelly N. Botteron, John R. Pruett, Joseph Piven, Holly L. Peay, J. Piven, H. C. Hazlett, C. Chappell, S. Dager, A. Estes, D. Shaw, K. Botteron, R. McKinstry, J. ConstantinoJ. Pruett, R. Schultz, J. Pandey, S. Paterson, J. Ellison, J. Wolff, A. C. Evans, D. L. Collins, G. B. Pike, V. Fonov, P. Kostopoulos, S. Das, L. MacIntyre, G. Gerig, M. Styner, H. Gu

Educational Psychology

Research output: Contribution to journal › Article › peer-review

13 Scopus citations

Abstract

Objective: Predictive testing for familial disorders can guide healthcare and reproductive decisions. Familial disorders with onset in childhood (e.g., autism spectrum disorder [ASD]) are promising targets for presymptomatic prediction; however, little is known about parent perceptions of risk to their children in the presymptomatic period. The current study examined risk perceptions in parents of infants at high familial risk for ASD enrolled in a longitudinal study of brain and behavior development. Methods: Semistructured interviews were conducted with 37 parents of high-risk infants during the presymptomatic window (3-15 months) that precedes an ASD diagnosis. Infants were identified as high familial risk due to having an older sibling with ASD. Parent interview responses were coded and interpreted to distill emerging themes. Results: The majority of parents were aware of the increased risk of ASD for their infants, and risk perceptions were influenced by comparisons to their older child with ASD. Parents reported a variety of negative emotions in response to perceived risk, including worry, fear, and sadness, and described impacts of perceived risk on their behavior: increased vigilance to emerging symptoms, altered reproductive and healthcare decisions, and seeking ongoing assessment through research. Conclusions: Parents of children at high familial risk for childhood-onset disorders like ASD face a period of challenging uncertainty during early development. In anticipation of a future in which presymptomatic testing for ASD is made available, it is important to understand how parents react to and cope with the elevated - but still highly uncertain - risk conveyed by family history.

Original language	English (US)
Pages (from-to)	121-130
Number of pages	10
Journal	Journal of pediatric psychology
Volume	45
Issue number	2
DOIs	https://doi.org/10.1093/jpepsy/jsz076
State	Published - Mar 1 2020

Bibliographical note

Funding Information:
This work was supported by a National Institutes of Health Autism Center of Excellence grant (National Institute of Mental Health and Eunice Kennedy Shriver National Institute of Child Health and Human Development grant number HD055741 to J.P.I.); Autism Speaks (grant number 6020); and the Simons Foundation (grant number 140209). Further support was provided by the National Institute of Mental Health of the National Institutes of Health (grant number F32MH118689 to K.E.M).

Funding Information:
1University of Washington Autism Center, Department of Speech & Hearing Sciences, 2University of North Carolina at Chapel Hill, TEACCH Autism Program, Department of Psychiatry, 3Seattle Children’s Hospital, Treuman Katz Center for Pediatric Bioethics, 4Department of Radiology, University of Washington, 5Children’s Hospital of Philadelphia, Center for Autism Research, 6University of Alberta, Faculty of Rehabilitation Medicine, 7Department of Psychiatry, Washington University School of Medicine in Saint Louis, 8Department of Psychiatry, University of North Carolina at Chapel Hill, and 9Research Triangle Institute, Center for Newborn Screening, Ethics, and Disability Studies All correspondence concerning this article should be addressed to Katherine E. MacDuffie, PhD, University of Washington Autism Center, 1701 NE Columbia Rd, Box 357920, Seattle, WA 98195, USA. E-mail: [email protected] *co-senior authors. **The Infant Brain Imaging Study (IBIS) Network is an NIH funded Autism Center of Excellence project and consists of a consortium of 8 universities in the U.S. and Canada. Clinical Sites: University of North Carolina: J. Piven (IBIS Network PI), H.C. Hazlett, C. Chappell; University of Washington: S. Dager, A. Estes, D. Shaw; Washington University: K. Botteron, R. McKinstry, J. Constantino, J. Pruett; Children’s Hospital of Philadelphia: R. Schultz, J. Pandey, S. Paterson; University of Alberta: L. Zwaigenbaum; University of Minnesota: J. Ellison, J. Wolff; Data Coordinating Center: Montreal Neurological Institute: A.C. Evans, D.L. Collins, G.B. Pike, V. Fonov, P. Kostopoulos, S. Das, L. MacIntyre; Image Processing Core: University of Utah: G. Gerig; University of North Carolina: M. Styner; Statistical Analysis Core: University of North Carolina: H. Gu.

Publisher Copyright:
© 2019 The Author(s).

Keywords

autism spectrum
ethical issues
parents
qualitative methods

Publisher link

10.1093/jpepsy/jsz076

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MacDuffie, K. E., Turner-Brown, L., Estes, A. M., Wilfond, B. S., Dager, S. R., Pandey, J., Zwaigenbaum, L., Botteron, K. N., Pruett, J. R., Piven, J., Peay, H. L., Piven, J., Hazlett, H. C., Chappell, C., Dager, S., Estes, A., Shaw, D., Botteron, K., McKinstry, R., ... Gu, H. (2020). "if He Has it, We Know What to Do": Parent Perspectives on Familial Risk for Autism Spectrum Disorder. Journal of pediatric psychology, 45(2), 121-130. https://doi.org/10.1093/jpepsy/jsz076

MacDuffie, KE, Turner-Brown, L, Estes, AM, Wilfond, BS, Dager, SR, Pandey, J, Zwaigenbaum, L, Botteron, KN, Pruett, JR, Piven, J, Peay, HL, Piven, J, Hazlett, HC, Chappell, C, Dager, S, Estes, A, Shaw, D, Botteron, K, McKinstry, R, Constantino, J, Pruett, J, Schultz, R, Pandey, J, Paterson, S, Ellison, J, Wolff, J, Evans, AC, Collins, DL, Pike, GB, Fonov, V, Kostopoulos, P, Das, S, MacIntyre, L, Gerig, G, Styner, M & Gu, H 2020, '"if He Has it, We Know What to Do": Parent Perspectives on Familial Risk for Autism Spectrum Disorder', Journal of pediatric psychology, vol. 45, no. 2, pp. 121-130. https://doi.org/10.1093/jpepsy/jsz076

@article{d4d287f7e6a84207be21c412575079df,

title = "{"}if He Has it, We Know What to Do{"}: Parent Perspectives on Familial Risk for Autism Spectrum Disorder",

abstract = "Objective: Predictive testing for familial disorders can guide healthcare and reproductive decisions. Familial disorders with onset in childhood (e.g., autism spectrum disorder [ASD]) are promising targets for presymptomatic prediction; however, little is known about parent perceptions of risk to their children in the presymptomatic period. The current study examined risk perceptions in parents of infants at high familial risk for ASD enrolled in a longitudinal study of brain and behavior development. Methods: Semistructured interviews were conducted with 37 parents of high-risk infants during the presymptomatic window (3-15 months) that precedes an ASD diagnosis. Infants were identified as high familial risk due to having an older sibling with ASD. Parent interview responses were coded and interpreted to distill emerging themes. Results: The majority of parents were aware of the increased risk of ASD for their infants, and risk perceptions were influenced by comparisons to their older child with ASD. Parents reported a variety of negative emotions in response to perceived risk, including worry, fear, and sadness, and described impacts of perceived risk on their behavior: increased vigilance to emerging symptoms, altered reproductive and healthcare decisions, and seeking ongoing assessment through research. Conclusions: Parents of children at high familial risk for childhood-onset disorders like ASD face a period of challenging uncertainty during early development. In anticipation of a future in which presymptomatic testing for ASD is made available, it is important to understand how parents react to and cope with the elevated - but still highly uncertain - risk conveyed by family history.",

keywords = "autism spectrum, ethical issues, parents, qualitative methods",

author = "MacDuffie, {Katherine E.} and Lauren Turner-Brown and Estes, {Annette M.} and Wilfond, {Benjamin S.} and Dager, {Stephen R.} and Juhi Pandey and Lonnie Zwaigenbaum and Botteron, {Kelly N.} and Pruett, {John R.} and Joseph Piven and Peay, {Holly L.} and J. Piven and Hazlett, {H. C.} and C. Chappell and S. Dager and A. Estes and D. Shaw and K. Botteron and R. McKinstry and J. Constantino and J. Pruett and R. Schultz and J. Pandey and S. Paterson and J. Ellison and J. Wolff and Evans, {A. C.} and Collins, {D. L.} and Pike, {G. B.} and V. Fonov and P. Kostopoulos and S. Das and L. MacIntyre and G. Gerig and M. Styner and H. Gu",

note = "Funding Information: This work was supported by a National Institutes of Health Autism Center of Excellence grant (National Institute of Mental Health and Eunice Kennedy Shriver National Institute of Child Health and Human Development grant number HD055741 to J.P.I.); Autism Speaks (grant number 6020); and the Simons Foundation (grant number 140209). Further support was provided by the National Institute of Mental Health of the National Institutes of Health (grant number F32MH118689 to K.E.M). Funding Information: 1University of Washington Autism Center, Department of Speech & Hearing Sciences, 2University of North Carolina at Chapel Hill, TEACCH Autism Program, Department of Psychiatry, 3Seattle Children{\textquoteright}s Hospital, Treuman Katz Center for Pediatric Bioethics, 4Department of Radiology, University of Washington, 5Children{\textquoteright}s Hospital of Philadelphia, Center for Autism Research, 6University of Alberta, Faculty of Rehabilitation Medicine, 7Department of Psychiatry, Washington University School of Medicine in Saint Louis, 8Department of Psychiatry, University of North Carolina at Chapel Hill, and 9Research Triangle Institute, Center for Newborn Screening, Ethics, and Disability Studies All correspondence concerning this article should be addressed to Katherine E. MacDuffie, PhD, University of Washington Autism Center, 1701 NE Columbia Rd, Box 357920, Seattle, WA 98195, USA. E-mail: [email protected] *co-senior authors. **The Infant Brain Imaging Study (IBIS) Network is an NIH funded Autism Center of Excellence project and consists of a consortium of 8 universities in the U.S. and Canada. Clinical Sites: University of North Carolina: J. Piven (IBIS Network PI), H.C. Hazlett, C. Chappell; University of Washington: S. Dager, A. Estes, D. Shaw; Washington University: K. Botteron, R. McKinstry, J. Constantino, J. Pruett; Children{\textquoteright}s Hospital of Philadelphia: R. Schultz, J. Pandey, S. Paterson; University of Alberta: L. Zwaigenbaum; University of Minnesota: J. Ellison, J. Wolff; Data Coordinating Center: Montreal Neurological Institute: A.C. Evans, D.L. Collins, G.B. Pike, V. Fonov, P. Kostopoulos, S. Das, L. MacIntyre; Image Processing Core: University of Utah: G. Gerig; University of North Carolina: M. Styner; Statistical Analysis Core: University of North Carolina: H. Gu. Publisher Copyright: {\textcopyright} 2019 The Author(s).",

year = "2020",

month = mar,

day = "1",

doi = "10.1093/jpepsy/jsz076",

language = "English (US)",

volume = "45",

pages = "121--130",

journal = "Journal of pediatric psychology",

issn = "0146-8693",

publisher = "Oxford University Press",

number = "2",

}

TY - JOUR

T1 - "if He Has it, We Know What to Do"

T2 - Parent Perspectives on Familial Risk for Autism Spectrum Disorder

AU - MacDuffie, Katherine E.

AU - Turner-Brown, Lauren

AU - Estes, Annette M.

AU - Wilfond, Benjamin S.

AU - Dager, Stephen R.

AU - Pandey, Juhi

AU - Zwaigenbaum, Lonnie

AU - Botteron, Kelly N.

AU - Pruett, John R.

AU - Piven, Joseph

AU - Peay, Holly L.

AU - Piven, J.

AU - Hazlett, H. C.

AU - Chappell, C.

AU - Dager, S.

AU - Estes, A.

AU - Shaw, D.

AU - Botteron, K.

AU - McKinstry, R.

AU - Constantino, J.

AU - Pruett, J.

AU - Schultz, R.

AU - Pandey, J.

AU - Paterson, S.

AU - Ellison, J.

AU - Wolff, J.

AU - Evans, A. C.

AU - Collins, D. L.

AU - Pike, G. B.

AU - Fonov, V.

AU - Kostopoulos, P.

AU - Das, S.

AU - MacIntyre, L.

AU - Gerig, G.

AU - Styner, M.

AU - Gu, H.

N1 - Funding Information: This work was supported by a National Institutes of Health Autism Center of Excellence grant (National Institute of Mental Health and Eunice Kennedy Shriver National Institute of Child Health and Human Development grant number HD055741 to J.P.I.); Autism Speaks (grant number 6020); and the Simons Foundation (grant number 140209). Further support was provided by the National Institute of Mental Health of the National Institutes of Health (grant number F32MH118689 to K.E.M). Funding Information: 1University of Washington Autism Center, Department of Speech & Hearing Sciences, 2University of North Carolina at Chapel Hill, TEACCH Autism Program, Department of Psychiatry, 3Seattle Children’s Hospital, Treuman Katz Center for Pediatric Bioethics, 4Department of Radiology, University of Washington, 5Children’s Hospital of Philadelphia, Center for Autism Research, 6University of Alberta, Faculty of Rehabilitation Medicine, 7Department of Psychiatry, Washington University School of Medicine in Saint Louis, 8Department of Psychiatry, University of North Carolina at Chapel Hill, and 9Research Triangle Institute, Center for Newborn Screening, Ethics, and Disability Studies All correspondence concerning this article should be addressed to Katherine E. MacDuffie, PhD, University of Washington Autism Center, 1701 NE Columbia Rd, Box 357920, Seattle, WA 98195, USA. E-mail: [email protected] *co-senior authors. **The Infant Brain Imaging Study (IBIS) Network is an NIH funded Autism Center of Excellence project and consists of a consortium of 8 universities in the U.S. and Canada. Clinical Sites: University of North Carolina: J. Piven (IBIS Network PI), H.C. Hazlett, C. Chappell; University of Washington: S. Dager, A. Estes, D. Shaw; Washington University: K. Botteron, R. McKinstry, J. Constantino, J. Pruett; Children’s Hospital of Philadelphia: R. Schultz, J. Pandey, S. Paterson; University of Alberta: L. Zwaigenbaum; University of Minnesota: J. Ellison, J. Wolff; Data Coordinating Center: Montreal Neurological Institute: A.C. Evans, D.L. Collins, G.B. Pike, V. Fonov, P. Kostopoulos, S. Das, L. MacIntyre; Image Processing Core: University of Utah: G. Gerig; University of North Carolina: M. Styner; Statistical Analysis Core: University of North Carolina: H. Gu. Publisher Copyright: © 2019 The Author(s).

PY - 2020/3/1

Y1 - 2020/3/1

N2 - Objective: Predictive testing for familial disorders can guide healthcare and reproductive decisions. Familial disorders with onset in childhood (e.g., autism spectrum disorder [ASD]) are promising targets for presymptomatic prediction; however, little is known about parent perceptions of risk to their children in the presymptomatic period. The current study examined risk perceptions in parents of infants at high familial risk for ASD enrolled in a longitudinal study of brain and behavior development. Methods: Semistructured interviews were conducted with 37 parents of high-risk infants during the presymptomatic window (3-15 months) that precedes an ASD diagnosis. Infants were identified as high familial risk due to having an older sibling with ASD. Parent interview responses were coded and interpreted to distill emerging themes. Results: The majority of parents were aware of the increased risk of ASD for their infants, and risk perceptions were influenced by comparisons to their older child with ASD. Parents reported a variety of negative emotions in response to perceived risk, including worry, fear, and sadness, and described impacts of perceived risk on their behavior: increased vigilance to emerging symptoms, altered reproductive and healthcare decisions, and seeking ongoing assessment through research. Conclusions: Parents of children at high familial risk for childhood-onset disorders like ASD face a period of challenging uncertainty during early development. In anticipation of a future in which presymptomatic testing for ASD is made available, it is important to understand how parents react to and cope with the elevated - but still highly uncertain - risk conveyed by family history.

AB - Objective: Predictive testing for familial disorders can guide healthcare and reproductive decisions. Familial disorders with onset in childhood (e.g., autism spectrum disorder [ASD]) are promising targets for presymptomatic prediction; however, little is known about parent perceptions of risk to their children in the presymptomatic period. The current study examined risk perceptions in parents of infants at high familial risk for ASD enrolled in a longitudinal study of brain and behavior development. Methods: Semistructured interviews were conducted with 37 parents of high-risk infants during the presymptomatic window (3-15 months) that precedes an ASD diagnosis. Infants were identified as high familial risk due to having an older sibling with ASD. Parent interview responses were coded and interpreted to distill emerging themes. Results: The majority of parents were aware of the increased risk of ASD for their infants, and risk perceptions were influenced by comparisons to their older child with ASD. Parents reported a variety of negative emotions in response to perceived risk, including worry, fear, and sadness, and described impacts of perceived risk on their behavior: increased vigilance to emerging symptoms, altered reproductive and healthcare decisions, and seeking ongoing assessment through research. Conclusions: Parents of children at high familial risk for childhood-onset disorders like ASD face a period of challenging uncertainty during early development. In anticipation of a future in which presymptomatic testing for ASD is made available, it is important to understand how parents react to and cope with the elevated - but still highly uncertain - risk conveyed by family history.

KW - autism spectrum

KW - ethical issues

KW - parents

KW - qualitative methods

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DO - 10.1093/jpepsy/jsz076

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C2 - 31764985

AN - SCOPUS:85080845110

SN - 0146-8693

VL - 45

SP - 121

EP - 130

JO - Journal of pediatric psychology

JF - Journal of pediatric psychology

IS - 2

ER -

"if He Has it, We Know What to Do": Parent Perspectives on Familial Risk for Autism Spectrum Disorder

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