Affichage des articles dont le libellé est parents. Afficher tous les articles
Affichage des articles dont le libellé est parents. Afficher tous les articles

25 juillet 2023

Perceptions des parents : Modèles de participation et souhaits de changement pour les enfants et les adolescents avec un diagnostic de "troubles" du spectre de l'autisme - Une étude descriptive basée sur la population suisse

Aperçu: G.M.

Contexte : On a signalé une faible participation chez les jeunes avedc un diagnostic de "troubles du spectre de l'autisme (dTSA), mais il est rare que l'on dispose d'informations liées à l'âge et au contexte.

Objectif : Cette étude visait à décrire, du point de vue des parents, deux modèles de participation et les souhaits de changement des parents d'enfants (âgés de 5 à 11 ans) et d'adolescents (âgés de 12 à 17 ans) avec un dTSA en Suisse.

Méthode : Une étude transversale a utilisé la version allemande de la Mesure de la participation et de l'environnement pour les enfants et adolescents pour décrire et juxtaposer les résultats de la participation de 60 enfants et 55 adolescents avec un dTSA à 45 activités à la maison, à l'école et dans la communauté, ainsi que les souhaits des parents en matière de changement.

Résultats : Les modèles de participation diffèrent selon les milieux et les groupes d'âge. On a constaté que les deux groupes participaient le plus à la maison, puis à l'école, tandis que la participation communautaire était faible ou inexistante.
Les enfants participaient davantage à la maison que les adolescents, tandis que la participation à l'école était plus élevée que la fréquence de participation dans les deux groupes d'âge.
La fréquence de la participation communautaire était généralement faible, mais plus élevée chez les enfants que chez les adolescents, tandis que l'implication était également faible dans les deux groupes. 
 
La moitié des parents ont exprimé un désir de changement avec trois tendances : 
  1. un désir généralisé de changement à la maison en raison des besoins élevés de soutien,
  2. les parents d'adolescents ont exprimé plus de désir de changement dans tous les contextes que ceux des enfants et 
  3. tous les parents souhaitaient principalement augmenter la fréquence de la participation et l'implication.

Conclusions : Cette étude informe la recherche et les prestataires de services sociaux, sanitaires et communautaires afin qu'ils remodèlent leurs programmes pour répondre aux besoins des parents et accroître la participation des jeunes avec un dTSA.

Mots-clés : PEM-CY ; autisme ; implication ; parents ; participation ; jeunes.
 
 . 2023 Jul 24. doi: 10.1111/cch.13155.  

Parents' perceptions: Participation patterns and desires for change for children and adolescents with autism spectrum disorder-A descriptive population-based study from Switzerland

Affiliations

Abstract

Background: Low participation in youth with autism spectrum disorder (ASD) has been reported, but age-related and contextual information is rare.

Objective: This study aimed to describe, from parental perspectives, two patterns of participation and parental desires for change of children (age: 5-11) and adolescents (age: 12-17) with ASD in Switzerland.

Method: A cross-sectional design used the German version of the Participation and Environment Measure-Child and Youth to describe and juxtapose the participation results of 60 children and 55 adolescents with ASD in 45 activities at home, school and in the community and parental desires for change.

Results: Participation patterns differed between settings and age groups. Both groups were found to participate most at home, followed by school, whereas community participation was either low or nonexistent. Children were more involved at home than adolescents, while school involvement was higher than participation frequency in both age groups. Community participation frequency was generally low but higher in children than in adolescents, while involvement was similarly low in both groups. Half the parents expressed desire for change with three tendencies: (1) widespread desire for change at home due to high support needs, (2) parents of adolescents expressed more desire for change in all settings than those of children and (3) all parents mainly desired to increase participation frequency and involvement.

Conclusions: This study informs research and social, health and community service providers to further reshape their programmes to meet parental needs and increase the participation of youth with ASD.

Keywords: PEM-CY; autism; involvement; parents; participation; youth.

References

REFERENCES

    1. Adolfsson, M., Malmqvist, J., Pless, M., & Granlund, M. (2011). Identifying child functioning from an ICF-CY perspective: Everyday life situations explored in measures of participation. Disability and Rehabilitation, 33(13-14), 1230-1244. https://doi.org/10.3109/09638288.2010.526163
    1. Anaby, D., Law, M., Coster, W., Bedell, G., Khetani, M., Avery, L., & Teplicky, R. (2014). The mediating role of the environment in explaining participation of children and youth with and without disabilities across home, school, and community. Archives of Physical Medicine and Rehabilitation, 95(5), 908-917. https://doi.org/10.1016/j.apmr.2014.01.005
    1. Arakelyan, S., Maciver, D., Rush, R., O'hare, A., & Forsyth, K. (2019). Family factors associated with participation of children with disabilities: A systematic review. Developmental Medicine and Child Neurology, 61(5), 514-522. https://doi.org/10.1111/dmcn.14133
    1. Arnell, S., Jerlinder, K., & Lundqvist, L. O. (2018). Perceptions of physical activity participation among adolescents with autism Spectrum disorders: A conceptual model of conditional participation. Journal of Autism and Developmental Disorders, 48(5), 1792-1802. https://doi.org/10.1007/s10803-017-3436-2
    1. Askari, S., Anaby, D., Bergthorson, M., & Majnemer, A. (2015). Participation of children with autism: What do we know? International Journal of Developmental Neuroscience, 47(Part_A), 98. https://doi.org/10.1016/j.ijdevneu.2015.04.268
    1. Bagatell, N. (2016). The routines and occupations of families with adolescents with autism spectrum disorders. Focus on Autistic Behavior, 31(1), 49-59. https://doi.org/10.1177/1088357615587503
    1. Bölte, S., Mahdi, S., de Vries, P. J., Granlund, M., Robison, J. E., Shulman, C., Swedo, S., Tonge, B. J., Wong, V., Zwaigenbaum, L., Segerer, W., & Selb. M. (2019). The gestalt of functioning in autism spectrum disorder: Results of the international conference to develop final consensus international classification of functioning, disability and health core sets. Autism, 23(2), 449-467. https://doi.org/10.1177/1362361318755522
    1. Bundesamt für Statistik. (2017). Familien in der Schweiz: Statistischer Bericht 2017 (pp. 1-110). Bundesamt für Statistik.
    1. Bundesrat. (2018). Bericht des Bundesrates: Autismus-Spektrum-Störungen: Massnahmen für die Verbesserung der Diagnostik, Behandlung und Begleitung von Menschen mit Autismus-Spektrum-Störungen in der Schweiz.
    1. Chang, Y. C., Chen, C. H., Huang, P. C., & Lin, L. Y. (2019). Understanding the characteristics of friendship quality, activity participation, and emotional well-being in Taiwanese adolescents with autism spectrum disorder. Scandinavian Journal of Occupational Therapy, 26(6), 452-462. https://doi.org/10.1080/11038128.2018.1449887
    1. Chapparo, C. J., & Hooper, E. (2002). When is it work? Perceptions of six year old children. Work, 19(3), 291-302.
    1. Chen, Y.-W., Bundy, A., Cordier, R., Chien, Y.-L., & Einfeld, S. (2016). The experience of social participation in everyday contexts among individuals with autism spectrum disorders: An experience sampling study. Journal of Autism and Developmental Disorders, 46(4), 1403-1414. https://doi.org/10.1007/s10803-015-2682-4
    1. Chien, C. W., Li-Tsang, C. W. P., Cheung, P. P. P., Leung, K. Y., & Lin, C. Y. (2020). Development and psychometric evaluation of the Chinese version of the participation and environment measure for children and youth. Disability and Rehabilitation, 42(15), 2204-2214. https://doi.org/10.1080/09638288.2018.1553210
    1. Churruca, K., Pomare, C., Ellis, L. A., Long, J. C., Henderson, S. B., Murphy, L. E. D., Leahy, C. J., & Braithwaite, J. (2021). Patient-reported outcome measures (PROMs): A review of generic and condition-specific measures and a discussion of trends and issues. Health Expectations, 24(4), 1015-1024. https://doi.org/10.1111/hex.13254
    1. Clark, M., & Adams, D. (2020). Listening to parents to understand their priorities for autism research. PLoS ONE, 15(8), 1-20. https://doi.org/10.1371/journal.pone.0237376
    1. Coster, W., Bedell, G., Law, M., Khetani, M. A., Teplicky, R., Liljenquist, K., Gleason, K., & Kao, Y.-C. (2011). Psychometric evaluation of the participation and environment measure for children and youth. Developmental Medicine and Child Neurology, 53(11), 1030-1037. https://doi.org/10.1111/j.1469-8749.2011.04094.x
    1. Csikszentmihalyi, M., & Larson, R. (1984). Being adolescent conflict and growth in teenager years. Basic books.
    1. Deckers, A., Muris, P., & Roelofs, J. (2017). Being on your own or feeling lonely? Loneliness and other social variables in youths with autism spectrum disorders. Child Psychiatry and Human Development, 48(5), 828-839. https://doi.org/10.1007/s10578-016-0707-7
    1. Devenish, B. D., Sivaratnam, C., Lindor, E., Papadopoulos, N., Wilson, R., McGillivray, J., & Rinehart, N. J. (2020). A brief report: Community supportiveness may facilitate participation of children with autism spectrum disorder in their community and reduce feelings of isolation in their caregivers. Frontiers in Psychology, 11, 583483. https://doi.org/10.3389/fpsyg.2020.583483
    1. Dovgan, K. N., & Mazurek, M. O. (2019). Relations among activity participation, friendship, and internalizing problems in children with autism spectrum disorder. Autism, 23(3), 750-758. https://doi.org/10.1177/1362361318775541
    1. Egilson, S., Jakobsdóttir, G., & Ólafsdóttir, L. B. (2018). Parent perspectives on home participation of high-functioning children with autism spectrum disorder compared with a matched group of children without autism spectrum disorder. Autism, 22(5), 560-570. https://doi.org/10.1177/1362361316685555
    1. Egilson, S., Jakobsdóttir, G., Ólafsson, K., & Leósdóttir, T. (2017). Community participation and environment of children with and without autism spectrum disorder: Parent perspectives. Scandinavian Journal of Occupational Therapy, 24(3), 187-196. https://doi.org/10.1080/11038128.2016.1198419
    1. Factor, R. S., Condy, E. E., Farley, J. P., & Scarpa, A. (2016). Brief report: Insistence on sameness, anxiety, and social motivation in children with autism Spectrum disorder. Journal of Autism and Developmental Disorders, 46(7), 2548-2554. https://doi.org/10.1007/s10803-016-2781-x
    1. Flynn, L., & Healy, O. (2012). A review of treatments for deficits in social skills and self-help skills in autism spectrum disorder. Research in Autism Spectrum Disorders, 6(1), 431-441. https://doi.org/10.1016/j.rasd.2011.06.016
    1. Friedman, N. D. B., Warfield, M. E., & Parish, S. L. (2013). Transition to adulthood for individuals with autism spectrum disorder: Current issues and future perspectives. Neuropsychiatry, 3(2), 181-192. https://doi.org/10.2217/npy.13.13
    1. Galpin, J., Barratt, P., Ashcroft, E., Greathead, S., Kenny, L., & Pellicano, E. (2018). ‘The dots just don't join up’: Understanding the support needs of families of children on the autism spectrum. Autism, 22(5), 571-584. https://doi.org/10.1177/1362361316687989
    1. Georgiades, S., & Kasari, C. (2018). Reframing optimal outcomes in autism. JAMA Pediatrics, 172(8), 716-717. https://doi.org/10.1001/jamapediatrics.2018.1016
    1. Ghanouni, P., Jarus, T., Zwicker, J. G., Lucyshyn, J., Chauhan, S., & Moir, C. (2019). Perceived barriers and existing challenges in participation of children with autism spectrum disorders: ‘He did not understand and no one else seemed to understand him.’ Journal of Autism and Developmental Disorders, 49(8), 3136-3145. https://doi.org/10.1007/s10803-019-04036-7
    1. Hilton, C. L., Crouch, M. C., & Israel, H. (2008). Out-of-school participation patterns in children with high-functioning autism spectrum disorders. American Journal of Occupational Therapy, 62(5), 554-563. https://doi.org/10.5014/ajot.62.5.554
    1. Ho, H., Fergus, K., & Perry, A. (2018). Looking back and moving forward: The experiences of Canadian parents raising an adolescent with autism spectrum disorder. Research in Autism Spectrum Disorders, 52(May), 12-22. https://doi.org/10.1016/j.rasd.2018.05.004
    1. Houghton, S., Kyron, M., Lawrence, D., Hunter, S. C., Hattie, J., Carroll, A., Zadow, C., & Chen, W. (2022). Longitudinal trajectories of mental health and loneliness for Australian adolescents with-or-without neurodevelopmental disorders: The impact of COVID-19 school lockdowns. Journal of Child Psychology and Psychiatry and Allied Disciplines, 63(11), 1332-1343. https://doi.org/10.1111/jcpp.13579
    1. Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277-1288. https://doi.org/10.1177/1049732305276687
    1. Imms, C., Granlund, M., Wilson, P. H., Steenbergen, B., Rosenbaum, P. L., & Gordon, A. M. (2017). Participation, both a means and an end: A conceptual analysis of processes and outcomes in childhood disability. Developmental Medicine and Child Neurology, 59(1), 16-25. https://doi.org/10.1111/dmcn.13237
    1. Jeong, Y., Law, M., Stratford, P., DeMatteo, C., & Kim, H. (2016). Cross cultural validation and psychometric evaluation on the participation and environment measure of children and youth in Korea. Disability & Rehabilitation, 38(22), 2217-2228. https://doi.org/10.3109/09638288.2015.1123302
    1. Kersten, M., Coxon, K., Lee, H., & Wilson, N. J. (2020). ‘In their own time’: Parents gently push their autistic youth towards independent community mobility and participation. Journal of Autism and Developmental Disorders, 50(8), 2806-2818. https://doi.org/10.1007/s10803-020-04384-9
    1. Khalifa, G., Rosenbaum, P., Georgiades, K., Duku, E., & Di Rezze, B. (2020). Exploring the participation patterns and impact of environment in preschool children with ASD. International Journal of Environmental Research and Public Health, 17(16), 1-15. https://doi.org/10.3390/ijerph17165677
    1. Khetani, M., Cliff, A., Schelly, C., Daunhauer, L., & Anaby, D. (2015). Decisional support algorithm for collaborative care planning using the participation and environment measure for children and youth (PEM-CY): A mixed methods study. Physical & Occupational Therapy in Pediatrics, 35(3), 231-252. https://doi.org/10.3109/01942638.2014.899288
    1. Krieger, B., Moser, A., Morgenthaler, T., Beurskens, A. J. H. M., & Piśkur, B. (2022). Parent's perceptions: Environments and the contextual strategies of parents to support the participation of children and adolescents with autism spectrum disorder-A descriptive population based study from Switzerland. Journal of Autism & Developmental Disorders, 1-23. https://doi.org/10.1007/s10803-022-05826-2
    1. Krieger, B., Piškur, B., Schulze, C., Jakobs, U., Beurskens, A., & Moser, A. (2018). Supporting and hindering environments for participation of adolescents diagnosed with autism spectrum disorder: A scoping review. PLoS ONE, 13(8), e0202071. https://doi.org/10.1371/journal.pone.0202071
    1. Krieger, B., Piškur, B., Schulze, C., Moser, A., & Beurskens, A. (2020). Environmental pre-requisites and social interchange: The participation experience of adolescents with autism spectrum disorder in Zurich. Disability & Rehabilitation, 43(26), 3789. https://doi.org/10.1080/09638288.2020.1753248
    1. Krieger, B., Schulze, C., Boyd, J., Amann, R., Piškur, B., Beurskens, A., Teplicky, R., & Moser, A. (2020). Cross-cultural adaptation of the participation and environment measure for children and youth (PEM-CY) into German: A qualitative study in three countries. BMC Pediatrics, 20(1), 492. https://doi.org/10.1186/s12887-020-02343-y
    1. Kuhaneck Miller, H., Madonna, S., Novak, A., & Pearson, E. (2015). Effectiveness of interventions for children with autism spectrum disorder and their parents: A systematic review of family outcomes. American Journal of Occupational Therapy, 69(5), 6905180040p1-14. https://doi.org/10.5014/ajot.2015.017855
    1. Laghi, F., Lonigro, A., Pallini, S., & Baiocco, R. (2018). Peer buddies in the classroom: The effects on spontaneous conversations in students with autism spectrum disorder. Child and Youth Care Forum, 47(4), 517-536. https://doi.org/10.1007/s10566-018-9449-y
    1. Lamash, L., Bedell, G., & Josman, N. (2019). Participation patterns of adolescents with autism spectrum disorder compared to their peers: parents' perspectives. British Journal of Occupational Therapy, 83(2), 78-87. https://doi.org/10.1177/0308022619853518
    1. Larson, E. (2006). Caregiving and autism: How does children's propensity for routinization influence participation in family activities? OTJR: Occupation, Participation and Health, 26(2), 69-79. https://doi.org/10.1177/153944920602600205
    1. Lasgaard, M., Nielsen, A., Eriksen, M. E., & Goossens, L. (2010). Loneliness and social support in adolescent boys with autism spectrum disorders. Journal of Autism and Developmental Disorders, 40(2), 218-226. https://doi.org/10.1007/s10803-009-0851-z
    1. Law, M., Anaby, D., Treplicky, R., Kehtani, M., Coster, W. J., & Bedell, G. M. (2013). Participation in the home environment among children and youth with and without disabilities. British Journal of Occupational Therapy, 76(2), 58-66. https://doi.org/10.4276/030802213X13603244419112
    1. Magnuson, K. M., & Constantino, J. N. (2011). Characterization of depression in children with autism spectrum disorders. Journal of Developmental and Behavioral Pediatrics : JDBP, 32(4), 332-340. https://doi.org/10.1097/DBP.0b013e318213f56c
    1. McAuliffe, T., Cordier, R., Chen, Y. W., Vaz, S., Thomas, Y., & Falkmer, T. (2020). In-the-moment experiences of mothers of children with autism spectrum disorder: A comparison by household status and region of residence. Disability and Rehabilitation, 1-15. https://doi.org/10.1080/09638288.2020.1772890
    1. Schwartz, J., Huntington, N., Toomey, M., Laverdiere, M., Bevans, K., Blum, N., Bridgemohan, C., Saini, M., Stoddart, K. P., Gibson, M., Morris, R., Barrett, D., Muskat, B., Nicholas, D., Rampton, G., Zwaigenbaum, L., Halloran, M., Sweeney, J., Doody, O., … Cobigo, V. (2016). The routines and occupations of families with adolescents with autism spectrum disorders. Research in Autism Spectrum Disorders, 31(3), 49-59. https://doi.org/10.1080/17518423.2016.1236844
    1. Simpson, K., Keen, D., Adams, D., Alston-Knox, C., & Roberts, J. (2018). Participation of children on the autism spectrum in home, school, and community. Child: Care, Health and Development, 44(1), 99-107. https://doi.org/10.1111/cch.12483
    1. Song, W., Shea, L., Nonnemacher, S. L., & Salzer, M. S. (2021). Community participation comparison between adults on the autism spectrum and adults in the general population. Journal of Autism and Developmental Disorders., 52, 1610-1621. https://doi.org/10.1007/s10803-021-05059-9
    1. Sood, D., LaVesser, P., & Schranz, C. (2014). Influence of home environment on participation in home activities of children with an autism spectrum disorder. The Open Journal of Occupational Therapy, 2(3), 1-20. https://doi.org/10.15453/2168-6408.1082
    1. UN General Assembly. (2007). Convention on the right of persons with disabilities: Resolution adopted by the general assembly, 24 January 2007. A/RES/61/106.
    1. Wainscot, J. J., Naylor, P., Sutcliffe, P., Tantam, D., & Williams, J. V. (2008). Relationships with peers and use of the school environment of mainstream secondary school pupils with Asperger syndrome (high-functioning autism): A case-control study. International Journal of Psychology and Psychological Therapy, 8(1), 25-38.
    1. WHO. (2001). International classification of functioning, disability and health (ICF). World Health Organization.
    1. Winter-Messiers, M. A. (2007). From tarantulas to toilet brushes: Understanding the special interest areas of children and youth with Asperger syndrome. Remedial and Special Education, 28(3), 140-152. https://doi.org/10.1177/07419325070280030301


15 juin 2021

Maternité : Perspectives et expériences féminines d'être parent avec un diagnostic de TSA

Aperçu: G.M.

On sait peu de choses sur les pressions émotionnelles et la gestion pratique des défis quotidiens et des exigences intra et interpersonnelles d'élever un enfant en tant que parent avec un diagnostic de "trouble du spectre de l'autisme". 

La présente étude a utilisé une approche qualitative pour comprendre les perceptions des femmes diagnostiquées autistes d' « être un parent ». 

Huit entretiens semi-structurés ont été analysés à l'aide de l'analyse phénoménologique interprétative.

Les avantages et les défis d'être parent ont été mis en évidence aux côtés des compétences et des caractéristiques spécifiques à la population associées à la force et à la résilience, à l'amour, à l'éducation, à la routine et aux considérations sensorielles. 

Les résultats identifient le besoin d'un soutien parental spécialisé spécifique à la population, fournissent une orientation aux professionnels en milieu clinique et élargissent la rareté de la recherche dans ce domaine.

. 2021 Jun 9.   doi: 10.1007/s10803-021-05122-5. 

Motherhood: Female Perspectives and Experiences of Being a Parent with ASC

Affiliations

Abstract

Little is known about the emotional pressures and practical management of daily challenges and, intra and interpersonal demands of raising a child as a parent with a diagnosis of Autistic Spectrum Conditions. The present study utilised a qualitative approach to understand perceptions of females diagnosed on the autistic spectrum of 'being a parent'. Eight semi-structured interviews were analysed using Interpretative Phenomenological Analysis. Benefits and challenges of being a parent were highlighted alongside population-specific skill and characteristics associated with strength and resilience, love, nurture, routine and sensory considerations. Findings identify the need for population-specific specialist parenting support, provide direction for professionals in clinical settings and expand the paucity of research in this area.

Keywords: Autistic spectrum conditions; Interpretative phenomenological analysis; Parenting.

References

    1. Alase, A.O. (2016). The impact of the Sarbanes-Oxley Act (SOX) on small-sized publicly traded companies and their communities. Unpublished doctoral dissertation, Northeastern University.
    1. Alase, A. (2017). The interpretative phenomenological analysis (IPA): A guide to a good qualitative research approach. International Journal of Education & Literacy Studies, 5(2), 9–19. https://doi.org/10.7575/aiac.ijels.v.5n.2p.9 - DOI
    1. American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Publishing. https://doi.org/10.1176/appi.books.9780890425596
    1. Asmussen, K. (2011). The evidence-based parenting Practitioner’s handbook. Routledge.
    1. Aston, M. C. (2002). The other half of Asperger syndrome (2nd ed.). The National Autistic Society.
    1. Attwood, T. (2008). The complete guide to Asperger’s syndrome (1st ed.). Jessica Kingsley Publishers.
    1. Attwood, T., & Grandin, T. (2006). Asperger’s and girls. Future Horizons.
    1. Bartsch, D. R., Roberts, R. M., Davies, M., & Proeve, M. (2016). Understanding the experience of parents with a diagnosis of borderline personality disorder. Australian Psychologist, 51(6), 472–480. https://doi.org/10.1111/ap.12174 - DOI
    1. Baxter, L., Hughes, C., & Tight, M. (2010). How to research (fourth). McGraw-Hill/Open University Press.
    1. Biggerstaff, D., & Thompson, A. R. (2008). Interpretative phenomenological analysis (IPA): A qualitative methodology of choice in healthcare research. Qualitative Research in Psychology, 5(3), 173–183. https://doi.org/10.1080/14780880802314304 - DOI
    1. Bishop, E. C., & Shepherd, M. L. (2011). Ethical reflections: Examining reflexivity through the narrative paradigm. Qualitative Health Research, 21(9), 1283–1294. https://doi.org/10.1177/1049732311405800 - DOI - PubMed
    1. Boshoff, K., Gibbs, D., Phillips, R. L., Wiles, L., & Porter, L. (2016). Parents’ voices: “Why and how we advocate”. A meta-synthesis of parents’ experiences of advocating for their child with autism spectrum disorder. Child: Care, Health & Development, 42(6), 784–797. https://doi.org/10.1111/cch.12383 - DOI
    1. Boshoff, K., Gibbs, D., Phillips, R. L., Wiles, L., & Porter, L. (2018). Parents’ voices: “Our process of advocating for our child with autism”. A meta-synthesis of parents’ perspectives. Child: Care, Health & Development, 44(1), 147–160. https://doi.org/10.1111/cch.12504 - DOI
    1. Connolly, M., & Ward, T. (2008). Morals, rights and practice in the human services: Effective and Fair decision making in health, social care and criminal justice. Jessica Kingsley Publishers.
    1. Couvrette, A., Brochu, S., & Plourde, C. (2016). The “Deviant good mother.” Journal of Drug Issues, 46(4), 292–307. - DOI
    1. Crane, L., Lui, L. M., Davies, J., & Pellicano, E. (2021). Short report: Autistic parents’ views and experiences of talking about autism with their autistic children. Autism: The International Journal of Research and Practice. https://doi.org/10.1177/1362361320981317 - DOI
    1. Curry, L. A., Nembhard, I. M., & Bradley, E. H. (2009). Qualitative and mixed methods provide unique contributions to outcomes research. Circulation, 119(10), 1442–1452. https://doi.org/10.1161/CIRCULATIONAHA.107.742775 - DOI - PubMed
    1. Davies, F., & Harman, B. (2017). A qualitative exploration of mothers who reject playgroup. Australian Social Work, 70(3), 276–288. https://doi.org/10.1080/0312407X.2016.1200642 - DOI
    1. Dawson-Squibb, J., Davids, E. L., & de Vries, P. J. (2018). Scoping the evidence for EarlyBird and EarlyBird plus, two United Kingdom-developed parent education training programmes for autism spectrum disorder. Autism, 23, 542–555. https://doi.org/10.1177/1362361318760295 - DOI - PubMed
    1. DePape, A. M., & Lindsay, S. (2015). Parents’ experiences of caring for a child with autism spectrum disorder. Qualitative Health Research, 25(4), 569–583. https://doi.org/10.1177/1049732314552455 - DOI - PubMed
    1. Department of Health. (2015). Statutory guidance for the Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy. Retrieved from https://assets.publishing.service.gov.uk/government/uploads/system/uploa...
    1. Di Lorito, C., Bosco, A., Birt, L., & Hassiotis, A. (2018). Co-research with adults with intellectual disability: A systematic review. Journal of Applied Research in Intellectual Disability, 31, 669–686. https://doi.org/10.1111/jar.12435 - DOI
    1. Dissanayake, C., Richdale, A., Kolivas, N., & Pamment, L. (2020). An exploratory study of autism traits and parenting. Journal of Autism and Developmental Disorders, 50(7), 2593–2606. https://doi.org/10.1007/s10803-019-03984-4 - DOI - PubMed
    1. Doss, B. D., Rhoades, G. K., Stanley, S. M., & Markman, H. J. (2009). The effect of the transition to parenthood on relationship quality: An 8-year prospective study. Journal of Personality and Social Psychology, 96(3), 601. https://doi.org/10.1037/a0013969 - DOI - PubMed - PMC
    1. NHS England. (2015). Transforming care agenda; homes not hospitals. Retrieved from https://www.england.nhs.uk/learning-disabilities/care/
    1. NHS England. (2016a). Stop over medication of people with a learning disability autism or both (STOMP). Retrieved from https://www.england.nhs.uk/learning-disabilities/improving-health/stomp/
    1. NHS England. (2016b). The five year forward view for mental health. Retrieved from https://www.england.nhs.uk/wp-content/uploads/2016/02/Mental-Health-Task...
    1. Engward, H., & Davis, G. (2015). Being reflexive in a qualitative grounded theory: Discussion and application of a model of reflexivity. Journal of Advanced Nursing, 71(7), 1530–1538. https://doi.org/10.1111/jan.12653 - DOI - PubMed
    1. Evans, G. W., Brooks-Gunn, J., & Klebanov, P. K. (2011). Stressing out the poor: Chronic physiological stress and the income-achievement gap. Community Investments, 23(2), 22–27.
    1. Fatemeh, O., Reza, Z., & Soodabeh, J. (2011). Outcomes of parental mental illness on children: A qualitative study. Journal of Psychosocial Nursing and Mental Health Services, 49(9), 32–40. https://doi.org/10.3928/02793695-20110802-06 - DOI
    1. Fillo, J., Simpson, J. A., Rholes, W. S., & Kohn, J. L. (2015). Dads doing diapers: Individual and relational outcomes associated with the division of childcare across the transition to parenthood. Journal of Personality and Social Psychology, 108(2), 298–316. https://doi.org/10.1037/a0038572 - DOI - PubMed - PMC
    1. Freeman, M. (2008). Hermeneutics. The SAGE encyclopedia of qualitative research methods. Sage Publications. https://doi.org/10.4135/9781412963909.n194
    1. George, N., Shanbhag, D. N., George, M., Shaju, A. C., Johnson, R. C., Mathew, P. T., & Goud, R. (2017). A study of emotional intelligence and perceived parenting styles among adolescents in a rural area in Karnataka. Journal of Family Medicine and Primary Care, 6(4), 848–852. https://doi.org/10.4103/jfmpc.jfmpc_100_17 - DOI - PubMed - PMC
    1. Gernsbacher, M., & Pripas-Kapit, S. (2012). Who’s missing the point? A commentary on claims that autistic persons have a specific deficit in figurative language comprehension. Metaphor & Symbol, 27(1), 93–105. https://doi.org/10.1080/10926488.2012.656255 - DOI
    1. Golan, O., Sinai-Gavrilov, Y., & Baron-Cohen, S. (2015). The Cambridge Mindreading Face-Voice Battery for Children (CAM-C): Complex emotion recognition in children with and without autism spectrum conditions. Molecular Autism, 6, 22. https://doi.org/10.1186/s13229-015-0018-z - DOI - PubMed - PMC
    1. Grant, K., McMahon, C., & Austin, M. (2008). Maternal anxiety during the transition to parenthood: A prospective study. Journal of Affective Disorder, 108(1), 101–111. https://doi.org/10.1016/j.jad.2007.10.002 - DOI
    1. Grant, L. (2015). From here to maternity: Pregnancy and motherhood on the autism spectrum. Jessica Kingsley Publishers.
    1. Heffernan, D. (2016). Sensory issues for adults with autism spectrum disorder. Jessica Kingsley Publishers.
    1. Hendrickx, S. (2015). Chapter 12 pregnancy and parenting. In J. Gould (Ed.), Women and girls with autism spectrum condition: Understanding life experiences from early childhood to old age. Jessica Kingsley Publishers.
    1. Hudson, A., & Jacques, S. (2014). Put on a happy face! Inhibitory control and socioemotional knowledge predict emotion regulation in 5- to 7-year-olds. Journal of Experimental Child Psychology, 123, 36–52. https://doi.org/10.1016/j.jecp.2014.01.012 - DOI - PubMed
    1. Hull, L., Petrides, K., Allison, C., Smith, P., Baron-Cohen, S., Lai, M.-C., & Mandy, W. (2017). “Putting on My Best Normal”: Social camouflaging in adults with autism spectrum conditions. Journal of Autism & Developmental Disorders, 47(8), 2519–2534. https://doi.org/10.1007/s10803-017-3166-5 - DOI
    1. Ierardi, E., Ferro, V., Trovato, A., Tambelli, R., & Riva Crugnola, C. (2019). Maternal and paternal depression and anxiety: Their relationship with mother-infant interactions at 3 months. Archives of Women’s Mental Health, 22(4), 527–533. https://doi.org/10.1007/s00737-018-0919-x - DOI - PubMed
    1. Jabbar, B. M. (2014). Parenting self-efficacy and role participation among parents with spinal cord injury. Retrieved from https://search.proquest.com/docview/1499821701?accountid=48092
    1. Jachyra, P., Anagnostou, E., Knibbe, T. J., Petta, C., Cosgrove, S., Chen, L., … McPherson, A. C. (2018). Weighty conversations: Caregivers’, children’s, and clinicians’ perspectives and experiences of discussing weight-related topics in healthcare consultations. Autism Research: Official Journal Of The International Society For Autism Research, 11(11), 1500–1510. http://doi.org/ https://doi.org/10.1002/aur.2017
    1. Jurkevythz, R., Campbell, M., & Morgan, L. (2020). Spectrum women: Autism and parenting. Jessica Kingsley Publishers.
    1. Khajehei, M. (2016). Parenting challenges and parents’ intimate relationships. Journal of Human Behavior in the Social Environment, 26(5), 447–451. https://doi.org/10.1080/10911359.2015.1083509 - DOI
    1. King, N. (2004). Using interview in qualitative research: Essential guide to qualitative methods in organizational research (2nd ed.). Sage publications.
    1. Korja, R., Piha, J., Otava, R., Lavanchy Scaiola, C., Ahlqvist-Björkroth, S., Junttila, N., … Räihä, H. (2015). Parents’ psychological well-being and parental self-efficacy in relation to the family’s triadic interaction. Infant Mental Health Journal, 36(3), 298–307. https://doi.org/10.1002/imhj.21512
    1. Lai, M.-C., Lombardo, M. V., Ruigrok, A. N. V., Chakrabarti, B., Auyeung, B., Szatmari, P., Happé, F., & Baron-Cohen, S. (2017). Quantifying and exploring camouflaging in men and women with autism. Autism, 21(6), 690–702. https://doi.org/10.1177/1362361316671012 - DOI - PubMed
    1. LaLiberte, T., Piescher, K., Mickelson, N., & Lee, M. H. (2017). Child protection services and parents with intellectual and developmental disabilities. Journal of Applied Research in Intellectual Disabilities, 30(3), 521–532. https://doi.org/10.1111/jar.12323 - DOI - PubMed
    1. Larkin, M., Watts, S., & Clifton, E. (2006). Giving voice and making sense in interpretative phenomenological analysis. Qualitative Research in Psychology, 3(2), 102–120. https://doi.org/10.1191/1478088706qp062oa - DOI
    1. Larsson, M., Sundler, A. J., Ekebergh, M., & Björk, M. (2015). Altering the parenting role: Parents’ experience of supporting the health and well-being of their adolescent girls. Child & Youth Care Forum, 44(3), 419–432. https://doi.org/10.1007/s10566-014-9287-5 - DOI
    1. Layner, J. A., Waterman, J., & Peplau, L. A. (2014). Parent adjustment over time in gay, lesbian, and heterosexual parent families adopting from foster care. American Journal of Orthopsychiatry, 84(1), 46–53. https://doi.org/10.1037/h0098853 - DOI
    1. Levy, A., & Perry, A. (2011). Outcomes in adolescents and adults with autism: A review of the literature. Research in Autism Spectrum Disorders, 5(4), 1271–1282. https://doi.org/10.1016/j.rasd.2011.01.023 - DOI
    1. Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of American Academy Child and Adolescent Psychiatry, 56(6), 466–474. https://doi.org/10.1016/j.jaac.2017.03.013 - DOI
    1. MacBeth, A., Law, J., McGowan, I., Norrie, J., Thompson, L., & Wilson, P. (2015). Mellow Parenting: Systematic review and meta-analysis of an intervention to promote sensitive parenting. Developmental Medicine and Child Neurology, 57(12), 1119–1128. https://doi.org/10.1111/dmcn.12864 - DOI - PubMed
    1. MacIntyre, G., & Stewart, A. (2012). For the record: The lived experience of parents with a learning disability: A pilot study examining the Scottish perspective. British Journal of Learning Disabilities, 40(1), 5–14. https://doi.org/10.1111/j.1468-3156.2010.00669.x - DOI
    1. Markham, L. (2014). A father’s tale: Stories and experiences of fathers whose children have been diagnosed with autism spectrum disorder. Professional doctorate thesis, University of East London.
    1. Mauthner, N. S., & Doucet, A. (2003). Reflexive accounts and accounts of reflexivity in qualitative data analysis. Sociology, 37, 413–431. https://doi.org/10.1177/00380385030373002 - DOI
    1. McCabe, J. L., & Holmes, D. (2009). Reflexivity, critical qualitative research and emancipation: A foucauldian perspective. Journal of Advanced Nursing, 65(7), 1518–1526. https://doi.org/10.1111/j.1365-2648.2009.04978.x - DOI - PubMed
    1. McGoldrick, M., Carter, B., & Garcia-Peto, N. (2011). The expanded family life cycle. Individual family and social perspectives (4th ed.). Allyn & Bacon.
    1. Medina, A. M., Lederhos, C. L., & Lillis, T. A. (2009). Sleep disruption and decline in marital satisfaction across the transition to parenthood. Families, Systems, & Health, 27(2), 153–160. https://doi.org/10.1037/a0015762 - DOI
    1. Mendes, E. A. (2015). Marriage and lasting relationships with Asperger’s syndrome (autism spectrum disorder). Jessica Kingsley Publishers.
    1. Mickelson, K. D., & Biehle, S. N. (2017). Gender and the transition to parenthood: Introduction to the special issue. Sex Roles, 76(5–6), 271–275. https://doi.org/10.1007/s11199-016-0724-9 - DOI
    1. Mihelic, M., Morawska, A., & Filus, A. (2018). Preparing parents for parenthood: Protocol for a randomized controlled trial of a preventative parenting intervention for expectant parents. BMC Pregnancy & Childbirth. https://doi.org/10.1186/s12884-018-1939-2 - DOI
    1. Miller, H. (2018). Prime-time parenting: The two-hour-a-day secret to raising great kids. DaCapoPress.
    1. Moreno, S., Wheeler, M. & Parkinson, K. (2012). Chapter 7 Parenting. In T. Attwood (Ed.), The partners guide to Asperger syndrome. Jessica Kingsley Publishers.
    1. Moroe, N. F., & de Andrade, V. (2018). Hearing children of deaf parents: Gender and birth order in the delegation of the interpreter role in culturally deaf families. African Journal of Disability, 7, 365. https://doi.org/10.4102/ajod.v7i0.365 - DOI - PubMed - PMC
    1. Morrison, K. E., DeBrabander, K. M., Jones, D. R., Faso, D. J., Ackerman, R. A., & Sasson, N. J. (2020). Outcomes of real-world social interaction for autistic adults paired with autistic compared to typically developing partners. Autism, 24(5), 1067–1080. https://doi.org/10.1177/1362361319892701 - DOI - PubMed
    1. Mosek-Eilon, V., Hirschberger, G., Kanat-Maymon, Y., & Feldman, R. (2013). Infant reminders alter sympathetic reactivity and reduce couple hostility at the transition to parenthood. Developmental Psychology, 49(7), 1385–1395. https://doi.org/10.1037/a0030088 - DOI - PubMed
    1. Müller, E., Schuler, A., & Yates, G. B. (2008). Social challenges and supports from the perspective of individuals with Asperger syndrome and other autism spectrum disabilities. Autism: The International Journal of Research & Practice, 12(2), 173–190. https://doi.org/10.1177/1362361307086664 - DOI
    1. Nanninga, M., Jansen, D. E. M. C., Knorth, E. J., & Reijneveld, S. A. (2015). Enrolement of children and adolescents in psychosocial care: More likely with low family social support and poor parenting skills. European Child & Adolescent Psychiatry, 24(4), 407–416. https://doi.org/10.1007/s00787-014-0590-3 - DOI
    1. National Autistic Society. (2019). Sensory sensitivity. Retrieved from http://www.autism.org.uk/sensory
    1. Nilova, V., Ward, L., & Hall, P. (2017). Women’s experiences of parenting toddlers following postnatal depression. Australian Journal of Psychology, 69, 192–199. https://doi.org/10.1111/ajpy.12138 - DOI
    1. Olsen, R., & Clarke, H. (2003). Parenting and disability: Disabled parents experiences of raising children. Policy Press.
    1. Paul, C., & Holt, J. (2017). Involving the public in mental health and learning disability research: Can we, should we, do we? Journal of Psychiatric and Mental Health Nursing, 24(8), 570–579. https://doi.org/10.1111/jpm.12404 - DOI - PubMed
    1. Pethica, S., & Bigham, K. (2018). “Stop talking about my disability, I am a mother”: Adapting video interaction guidance to increase sensitive parenting in a young mother with intellectual disability. British Journal of Learning Disabilities, 46(2), 136–142. https://doi.org/10.1111/bld.12215 - DOI
    1. Pietkiewicz, I., & Smith, J. A. (2014). A practical guide to using interpretative phenomenological analysis in qualitative research psychology. Psychological Journal, 20(1), 7–14.
    1. RCPSYCH, (2019). Autism and Asperger’s: For parents, carers and anyone working with young people. Retrieved from https://www.rcpsych.ac.uk/mental-health/parents-and-young-people/informa...
    1. Riggs, D. W., Bartholomaeus, C., & Due, C. (2016). Public and private families: A comparative thematic analysis of the intersections of social norms and scrutiny. Health Sociology Review, 25(1), 1–17. https://doi.org/10.1080/14461242.2015.1135071 - DOI
    1. Riley-Hall, E. (2012). Parenting girls on the autism spectrum: Overcoming the challenges and celebrating the gifts. Jessica Kingsley Publishers.
    1. Sanders, M. R., Kirby, J. N., Tellegen, C. L., & Day, J. J. (2014). The triple P-positive parenting program: A systematic review and meta-analysis of a multi-level system of parenting support. Clinical Psychology Review, 34(4), 337–357. https://doi.org/10.1016/j.cpr.2014.04.003 - DOI - PubMed
    1. Sandstrom, H., & Huerta, S. (2013). The negative effects of instability on child development: A research synthesis (Low Income Working Families Discussion Paper 3). Urban Institute.
    1. Schneid, I., & Raz, A. E. (2020). The mask of autism: Social camouflaging and impression management as coping/normalization from the perspectives of autistic adults. Social Science & Medicine (1982), 248, 112826. https://doi.org/10.1016/j.socscimed.2020.112826 - DOI
    1. Schopler, E., & Mesibov, G. B. (2013). Diagnosis and assessment in autism. Springer.
    1. Sheldon, J. P., Oliver, M., & Yshar, B. M. (2019). Rewards and challenges of parenting a child with Down syndrome: A qualitative study of fathers’ perceptions. Journal of Disability and Rehabilitation. https://doi.org/10.1080/09638288.2020.1745907 - DOI
    1. Shonkoff, J. P., & Garner, A. S. (2011). The lifelong effects of early childhood adversity and toxic stress. American Academy of Paediatrics, 129, 232–246. https://doi.org/10.1542/peds.2011-2663 - DOI
    1. Shore, S., & Rastelli, L. G. (2011). Understanding autism for dummies. Wiley.
    1. Simone, R. (2012). Chapter 12 Her name isn't mommy no matter how much she loves her child. In T. Attwood (Ed.), 22 things a woman with Asperger's syndrome wants her partner to know. Jessica Kingsley Publishers.
    1. Stuttard, L., Beresford, B. A., Clarke, S. E., Beecham, J., & Morris, A. (2016). An evaluation of the cygnet parenting support programme for parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 23, 166–178. https://doi.org/10.1016/j.rasd.2015.12.004 - DOI
    1. Tabak, I., Zabocka-ytka, L., Ryan, P., Poma, S. Z., Joronen, K., Viganò, G., . . . Dawson, I. (2016). Needs, expectations and consequences for children growing up in a family where the parent has a mental illness. International Journal of Mental Health Nursing, 25(4), 319–329. https://doi.org/10.1111/inm.12194
    1. van Schalkwyk, G. I., & Dewinter, J. (2020). Qualitative research in the journal of autism and developmental disorders. Journal of Autism and Developmental Disorders, 50(7), 2280–2282. https://doi.org/10.1007/s10803-020-04466-8 - DOI - PubMed
    1. Webster-Stratton, C. (2005). The incredible years: A trouble-shooting guide for parents of children aged 2–8 years. Umbrella Printer.
    1. Weigel, D. J. (2008). The concept of family: An analysis of laypeople’s views of family. Journal of Family Issues, 29(11), 1426–1447. https://doi.org/10.1177/0192513X08318488 - DOI
    1. Werner-Bierwisch, T., Pinkert, C., Niessen, K., Metzing, S., & Hellmers, C. (2018). Mothers’ and fathers’ sense of security in the context of pregnancy, childbirth and the postnatal period: An integrative literature review. BMC Pregnancy and Childbirth, 18(1), 473. https://doi.org/10.1186/s12884-018-2096-3 - DOI - PubMed - PMC
    1. Willey, L., H. (1999). Chapter 6 Rocking my babies. In T. Attwood (Ed.), Pretending to be normal: Living with Asperger's syndrome. Jessica Kingsley Publishers.
    1. Wing, L., & Gould, J. (1979). Severe impairments of social interaction and associated abnormalities in children: Epidemiology and classification. Journal of Autism and Developmental Disorders, 9(1), 11–29. https://doi.org/10.1007/BF01531288 - DOI - PubMed