Skip to Main Content

Autism and Developmental Disorders
2022. Vol. 20, no. 1, 37–46
doi:10.17759/autdd.2022200105
ISSN: 1994-1617 / 2413-4317 (online)

Implementation of Support Programs for Parents of Preschool Children with ASD

437

A.V. Bobrova, S.V. Dovbnya, T.Y. Morozova, E.N. Sotova

PDF (RUS)
Online translation in english
GS
Information
in Google Scholar

Abstract

Growing number of children diagnosed with Autism Spectrum Disorder (ASD) is rising the demand for programs to help their families. The problems and difficulties faced by parents raising children with ASD are discussed. Modern research and systematic reviews of the needs of their families raising preschoolers with autism spectrum disorders (ASD) are presented, as well as the opportunities offered by participation in the support and education programs. The examples of parent education and parent-mediated programs are listed. The results of research on parent’s stress associated with the care, upbringing and education of a child with ASD are presented. Three programs which meet international standards and have evidence of effectiveness and implemented in the Nizhny Novgorod region to support parents of preschool children with ASD are described: “CST — Caregiver Skills Training”, “EarlyBird”, JASPER. The need of selecting the programs according to the actual needs of the family and the child is concluded.

General Information

Keywords: autism spectrum disorder; ASD; Family support programs; stress in the family; “CST — Caregiver skills training”;”EarlyBird”; JASPER

Journal rubric: Education & Intervention Methods

Article type: scientific article

DOI: https://doi.org/10.17759/autdd.2022200105

Acknowledgements. The authors of the article are grateful for their Russian and international colleagues, our cooperation made it possible to use effective support programs for parents of children with autism — the Naked Hearts and Way Our Foundations, the National Autism Society (NAS) and personally Joe Stevens, the staff of the JASPER program (UGLA, University of California) and personally Connie Kazari and Jonathan Pangabian, as well as the developers of CST Program — experts from WHO and Autism Speaks.

Received: 26.10.2021

Accepted:

For citation: Bobrova A.V., Dovbnya S.V., Morozova T.Y., Sotova E.N. Implementation of Support Programs for Parents of Preschool Children with ASD. Autizm i narusheniya razvitiya = Autism and Developmental Disorders, 2022. Vol. 20, no. 1, pp. 37–46. DOI: 10.17759/autdd.2022200105. (In Russ., аbstr. in Engl.)

References

  1. Volkmar F.R., Weisner L.A. Autizm: prakticheskoe rukovodstvo dlya roditelei, chlenov sem’i i uchitelei [A Practical Guide to Autism: What Every Parent, Family Member, and Teacher Needs to Know]: In 3 vol. Ekaterinburg: Publ. Rama Pablishing, 2014. [Vol. 1]: 224 p. ISBN 978-5-91743-049-2. [Vol. 2]: 288 p. ISBN 978-5-91743-054-6. [Vol. 3]: 224 p. ISBN 978-5-91743-055-3.
  2. Grigorenko E.L. Rasstroistva autisticheskogo spektra: Vvodnyi kurs: Uchebnoe posobie dlya studentov [Autism spectrum disorders: Introductory course: Manual] [Web resource]. Moscow: Publ. Praktika, 2018. 280 p. ISBN 978-5-89816-163-7. URL: https://outfund.ru/wp-content/uploads/2018/04/RAS_book.pdf (Accessed 20.01.2022).
  3. Rogers S.J., Dawson G., Vismara L.A. Denverskaya model’ rannego vmeshatel’stva dlya detei s autizmom: Kak v protsesse povsednevnogo vzaimodeistviya nauchit’ rebenka igrat’, obshchat’sya i uchit’sya [Early Start Denver Model for Young Children with Autism: Promoting Language, Learning, and Engagement]. Ekaterinburg: Publ. Rama Pablishing, 2016. 416 p. ISBN 978-5-91743-067-6.
  4. Dovbnya S., Morozova T., Zalogina A., Monova I. Deti s rasstroistvami autisticheskogo spektra v detskom sadu i shkole: praktiki s dokazannoi effektivnost’yu [Children with autism spectrum disorder in kindergarten and school: practices with proven effectiveness]. Saint Petersburg: Publ. Seans, 2018. 202 p. ISBN 978-5-905669-37-8.
  5. Kak pomoch’ doshkol’niku s rasstroistvom autisticheskogo spektra? Opyt spetsialistov sluzhb rannego vmeshatel’stva Fonda «Obnazhennye serdtsa» [How to help a preschooler with ASD? Experience of specialists from early intervention services of the Naked Hearts Foundation]. [Moscow: Publ. Eksmo], 2020. 149 p. ISBN 978-5-6042934-0-9.
  6. Kasari C. Sovremennoe sostoyanie povedencheskikh vmeshatel’stv pri autizme i narusheniyakh razvitiya [Update on behavioral interventions for autism and developmental disabilities]. Autizm i narusheniya razvitiya [Autism and Developmental Disorders (Russia)], 2016, vol. 14, no 4, pp. 68—76. DOI:10.17759/autdd.2016140409
  7. Baraskewich J., von Ranson K.M., McCrimmon A., McMorris C.A. Feeding and eating problems in children and adolescents with autism: A scoping review. Autism, 2021, vol. 25, no. 6, pp. 1505—1519. DOI:10.1177/1362361321995631
  8. Bearss K., Burrell T.L., Stewart L., Scahill L. Parent Training in Autism Spectrum Disorder: What’s in a Name? Clinical Child and Family Psychology Review, 2015, vol. 18, no. 2, pp. 170—182. DOI:10.1007/s10567-015-0179-5
  9. Bearss K., Johnson C., Handen B. et al. Parent Training for Disruptive Behavior: The RUBI  Autism  Network: Clinician Manual. Oxford: Publ. Oxford University Press, 2018. ISBN 978-0-19-062781-2. DOI:10.1093/med- psych/9780190627812.001.0001
  10. Clubb M. An evaluation of EarlyBird and EarlyBird Plus over seven years: the benefits of parents and school staff being trained together. Good Autism Practice, 2012, vol. 13, no. 1, pp. 69—77.
  11. Cuomo B.M., Vaz S., Lee E. et al. Effectiveness of Sleep-Based Interventions for Children with Autism Spectrum Disorder: A Meta-Synthesis. Pharmacotherapy, 2017, vol. 37, no. 5, pp. 555—578. DOI:10.1002/phar.1920
  12. Cutress A., Muncer S. Parents’ views of the National Autistic Society’s EarlyBird Programme. Autism, 2014, vol. 18, no. 6, pp. 651—657. DOI:10.1177/1362361313495718
  13. Dawson-Squibb J.J., Davids E.L., de Vries P.J. Scoping the evidence for EarlyBird and EarlyBird Plus, two United Kingdom-developed parent education training programmes for autism spectrum disorder. Autism, 2019, vol. 23, no. 3, pp. 542—555. DOI:10.1177/1362361318760295
  14. Dawson-Squibb J.J., Davids E.L., Harrison A.J. et al. Parent Education and Training for autism spectrum disorders: Scoping the evidence. Autism, 2020, vol. 24, no. 1, pp. 7—25. DOI:10.1177/1362361319841739
  15. Deb S., Retzer A., Roy M. et al. The effectiveness of parent training for children with autism spectrum disorder: a systematic review and meta-analyses. BMC Psychiatry, 2020, vol. 20, article no. 583. 24 p. DOI:10.1186/s12888-020- 02973-7
  16. Decroocq C., Soulas T., Lichtl J. et al. Facilitators’ perspectives on a psychoeducational program for parents of an autistic child. Autism, 2020, vol. 24, no. 5, pp. 1273—1285. DOI:10.1177/1362361319899766
  17. Distefano C., Kaiser A., Wright C. et al. Parents’ Adoption of Social Communication Intervention Strategies: Families Including Children with Autism Spectrum Disorder Who are Minimally Verbal. Journal of Autism and Developmental Disorders, 2015, vol. 45, no. 6, pp. 1712—1724.
  18. Gerow S., Hagan-Burke S., Rispoli M. et al.  A   systematic   review   of   parent-implemented   functional communication training for children with ASD. Behavior Modification, 2018, vol. 42, no. 3, pp. 335—363. DOI:10.1177/0145445517740872
  19. Hayes S.A., Watson S.L. The Impact of Parenting Stress: A Meta-analysis of Studies Comparing the Experience of Parenting Stress in Parents of Children With and Without Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 2013, vol. 43, no. 3, pp. 629—642. DOI:10.1007/s10803-012-1604-y
  20. Ho M., Lin L. Efficacy of parent-training programs for preschool children with autism spectrum disorder: A randomized controlled trial. Research in Autism Spectrum Disorders, 2020, vol. 71, article no. 101495. 10 p. DOI:10.1016/j. rasd.2019.101495
  21. Iadarola S., Levato L., Harrison B. et al. Teaching parents behavioural strategies for autism Spectrum disorder (ASD): effects on stress, strain, and competence. Journal of Autism and Developmental Disorders, 2018, vol. 48, no. 4, pp. 1031— 1040. DOI:10.1007/s10803-017-3339-2
  22. Karst,J., van Hecke A. Parent and family impact of Autism Spectrum Disorders: a review and proposed model for intervention evaluation. Clinical Child and Family Psychology Review, 2012, vol. 15, no. 3, pp. 247—277. DOI:10.1007/ s10567-012-0119-6
  23. Kasari C., Gulsrud A., Paparella T. et al. Randomized comparative efficacy study of parent-mediated interventions for toddlers with autism. Journal of Consulting and Clinical Psychology, 2015, vol. 83, no. 3, pp. 554—563. DOI:10.1037/ a0039080
  24. Maenner M.J., Shaw K.A., Baio J. et al. Prevalence of autism spectrum disorder among children aged 8 years — Autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 2020, vol. 69, no. 4, pp. 1—12.
  25. Meeting Report. Autism spectrum disorders & other developmental disorders: From raising awareness to building capacity (Geneva, 16—18 September 2013). Geneva: Publ. World Health Organization, 2013. 40 p. ISBN 978-92-4-150661-8.
  26. Musetti A., Manari T., Dioni B. et al. Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review. Journal of personalized medicine, 2021,
  27. O’Donovan K.L., Armitage S., Featherstone J. et al. Group-based parent training interventions for parents of children with autism spectrum disorders: A literature review. Review Journal of Autism and Developmental Disorders, 2019, vol. 6, no. 1, pp. 85—95. DOI:10.1007/s40489-018-00155-6
  28. Pacia C., Holloway J., Gunning C., Lee H. A Systematic Review of Family-Mediated Social Communication Interventions for Young Children with Autism. Review Journal of Autism and Developmental Disorders, 2021. [Published online.] 27 p. DOI:10.1007/s40489-021-00249-8
  29. Parsons D., Cordier R., Vaz S., Lee H.C. Parent-mediated intervention training delivered remotely for children with autism spectrum disorder living outside of urban areas: systematic review. Journal of Medical Internet Research, 2017, vol. 19, no. 8, article no. e198. 19 p. DOI:10.2196/jmir.6651
  30. Postorino V., Sharp W.G., McCracken C.E. et al. A systematic review and meta-analysis of parent training for disruptive behaviour in children with autism Spectrum disorder. Clinical Child and Family Psychological Review, 2017, vol. 20, vo. 4, pp. 391—402. DOI:10.1007/s10567-017-0237
  31. Salomone E., Pacione L., Shire S. et al. Development of the WHO Caregiver Skills Training Program for Developmental Disorders or Delays. Frontiers in Psychiatry, 2019, vol. 10, article no. 769. 9 p. DOI:10.3389/fpsyt.2019.00769
  32. Schreibman L., Dawson G., Stahmer A. et al. Naturalistic Developmental Behavioural Interventions: Empirically validated treatments for autism spectrum disorder. Journal of Autism and Developmental Disorders, 2015, vol. 45, no. 8, pp. 2411— 2428. DOI:10.1007/s10803-015-2407-8
  33. Shi B., Wu W., Dai M. et al. Cognitive, Language, and Behavioral Outcomes in Children With Autism Spectrum Disorders Exposed to Early Comprehensive Treatment Models: A Meta-Analysis and Meta-Regression. Frontiers in Psychiatry, 2021, vol. 12, article no. 691148. 17 p. DOI:10.3389/fpsyt.2021.691148
  34. Shire S.Y., Chang Y.C., Shih W. et al. Hybrid implementation model of community-partnered early intervention for toddlers with autism: a randomized trial. Journal of child psychology and psychiatry, and allied disciplines, 2017, vol. 58, no. 5, pp. 612—622. DOI:10.1111/jcpp.12672
  35. Stevens J., Shields J. Does attending an NAS EarlyBird or EarlyBird Plus programme make a difference? Good Autism Practice, 2013, vol. 14, no. 2, pp. 82—89.
  36. Yorke I., White P., Weston A. et al. the association between emotional and behavioural problems in children with autism spectrum disorder and psychological distress in their parents: A systematic review and meta-analysis. Journal of Autism and Developmental Disorders, 2018, vol. 48, no. 10, pp. 3393—3415. DOI:10.1007/s10803-018-3605-y

Information About the Authors

Anna V. Bobrova, special teacher, Family support сenter "Naked hearts", program manager, CST Master trainer, EarlyBird trainer, Nizhniy Novgorod, Russia, ORCID: https://orcid.org/0000-0002-2311-8285, e-mail: bobrovaanna@yandex.ru

Svyatoslav V. Dovbnya, MSWSS, expert, Naked Heart Foundation, EarlyBird trainer for trainers, Moscow, Russia, ORCID: https://orcid.org/0000-0002-6008-8054, e-mail: s_dovbnya@mail.ru

Tatiana Y. Morozova, expert, Naked Hearts Foundation, EarlyBird trainer for trainers, Moscow, Russia, ORCID: https://orcid.org/0000-0003-3880-5640, e-mail: taniusham@mail.ru

Ekaterina N. Sotova, educational psychologist, Family Support Center “Naked Heart”, Moscow, Russia, ORCID: https://orcid.org/0000-0001-8367-9984, e-mail: sotova.ekaterina2014@yandex.ru

Metrics

Views

Total: 1327
Previous month: 37
Current month: 13

Downloads

Total: 437
Previous month: 15
Current month: 6