Research of Characteristics of Families Raising Children with ASD

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Abstract

The article considers results of the questionnaire of 629 families from 43 regions of Russia and the Republic of Belarus in terms of family composition, education and employment of parents. 76.5% of respondents’ families are nuclear type. It is shown that with a high secondary level of education (76.3% higher level, 18.8% second ary special level) there is a low percentage of employment (40.5%). The range of distribution by profession dif fers by major occupational groups from the national average range. Revealed that among respondents16.7% are psychoeducational professionals (an average of 1.7% in the Russian Federation), accountants, economists, bank employees 14.7% (an excess of about 10 times from the national average), medical workers 6.6% (an excess of 3 times from the national average), employees in the field of information technology 3.0% (an excess of 2.5 times from the national average). The reasons of distortion of professions profile among respondents are considered. The demographic depression of families with children with autism (1.8 children per family) was revealed. The main directions for improving the situation are the development of the system of support of individuals with ASD, the organization of parental education in the field of autism, and socioeconomic assistance to the families of children with ASD.

General Information

Keywords: autism, family with children with autism, family composition with children with autism, education, employment

Journal rubric: Research of ASD

Article type: scientific article

DOI: https://doi.org/10.17759/autdd.2022200209

Funding. Funding was provided as part of the state task of the RANEPA for 2021 on the topic of research work 11.18 “Development of a methodology for supporting families with children with autism spectrum disorders (ASD)”

Received: 21.04.2022

Accepted:

For citation: Morozov S.A., Chigrina S.G. Research of Characteristics of Families Raising Children with ASD. Autizm i narusheniya razvitiya = Autism and Developmental Disorders, 2022. Vol. 20, no. 2, pp. 78–84. DOI: 10.17759/autdd.2022200209. (In Russ., аbstr. in Engl.)

References

  1. Bogacheva O.I., Ivanov M.V., Simashkova N.V. Osvedomlennost’ roditelei o zabolevanii detei s rasstroistvami autisticheskogo spektra [Awareness of Parents about the Disease of Children with Autism Spectrum Disorders]. Autizm i narusheniya razvitiya [Autism and Developmental Disorders (Russia)], 2019, vol. 17, no. 4, pp. 3—11. DOI:10.17759/autdd.2019170401
  2. Greenspan S., Wieder S. Na ty s autizmom: Ispol’zovanie metodiki Floortime dlya razvitiya otnoshenii, obshcheniya i myshleniya [Engaging autism: Using the Floortime approach to help children relate, communicate and think]. Moscow: Publ. Terevinf, 2013. 541 p. ISBN 978-5-4212-0148-9.
  3. Cohen Sh. Kak zhit’ s autizmom? Psikhologo-pedagogicheskie rekomendatsii po vzaimodeistviyu i rabote s det’mi s autizmom [Targeting Autism]. Moscow: Publ. Institut obshchegumanitarnykh issledovanii, 2008. 238 p. ISBN 978-5-88230-232-9.
  4. Cooper J.O., Heron T.E., Heward W.L. Prikladnoi analiz povedeniya [Applied Behavior Analysis]. Moscow: Publ. Praktika, 2016. 826 p. ISBN 978-5-89816-157-6.
  5. Lebedinskaya K.S., Nikol’skaya O.S., Baenskaya E.R. et al. Deti s narusheniyami obshcheniya: Rannii detskii autism [Children with communication disorders: Autism in early childhood]. Moscow: Publ. Prosveshchenie, 1989. 95 p. ISBN 5-09-001264-4.
  6. MKB-11: Mezhdunarodnaya klassifikatsiya boleznei 11 peresmotra [ICD-11] [Web resource] / World Health Organization. URL: https://icd.who.int/ru (Accessed 06.06.2022).
  7. Morozov S.A. Problemy pomoshchi detyam i podrostkam s rasstroistvami autisticheskogo spektra v Rossii [Problems of support for children and adolescents with autism spectrum disorders in Russia]. In Morozov S.A. (ed.) Organizatsiya psikhologo-pedagogicheskoi i mediko-sotsial’noi pomoshchi litsam s rasstroistvami autisticheskogo spektra: Materialy mezhdunarodnoi nauchno-prakticheskoi konferentsii (Moskva, 1—3 oktyabrya 2009 g.) [Organization of psychological, pedagogic, pedagogic, medical and social support for people with ASD: Proceedings of the international scientific and practical conference (Moscow, October 1—3, 2009)]. Moscow, 2009. Pp. 12—30.
  8. Morozov S.A., Morozova S.S., Morozova T.I. Issledovanie otnosheniya roditelei k osobennostyam razvitiya svoikh detei s autizmom [The Study of Parent Attitude to the Developmental Features of Children with Autism]. Autizm i narusheniya razvitiya [Autism and Developmental Disorders (Russia)], 2021, vol. 19, no. 4, pp. 32—39. DOI:10.17759/autdd.2021190404
  9. Morozov S.A., Morozova S.S. Prakticheskie aspekty etiopatogeneticheskoi klassifikatsii autisticheskikh proyavlenii [Practical aspects of etiopathogenetic classification of autistic displays]. In Psikhologo-pedagogicheskoe soprovozhdenie obrazovatel’nogo protsessa: Problemy, perspektivy, tekhnologii: Materialy VIII nauchno-prakticheskoi konferentsii (1—2 aprelya 2021 g.) [Psychological and pedagogic support of the educational process: Problems, perspectives, technologies, Proceedings of the 8th scientific and practical conference (1—2 April 2021)]. Oryol: Publ. Oryol State University, 2021. Pp. 201—205. ISBN 978-5-9929-1040-7.
  10. Morozov S.A., Morozova T.I. K voprosu o prirode nekotorykh osobennostei sensorno-pertseptivnoi sfery pri rasstroistvakh autisticheskogo spektra [On the Nature of Some Features of Sensory and Perceptual Spheres in Autism Spectrum Disorders]. Autizm i narusheniya razvitiya [Autism and Developmental Disorders (Russia)], 2020, vol. 18, no. 4, pp. 66—73. DOI:10.17759/autdd.2020180408
  11. Morozov S.A., Morozova S.S. Na puti k novoi klassifikatsii i novoi kontseptsii autizma [Towards a New Classification and a New Concept of Autism]. Vospitanie i obuchenie detei s narusheniyami razvitiya [Upbringing and education for children with autism spectrum disorders], 2019, no. 7, pp. 16—21.
  12. Morozov S.A. Kompleksnoe soprovozhdenie lits s rasstroistvami autisticheskogo spectra [Comprehensive support for people with autism spectrum disorders]. Moscow, 2015. 540 p. ISBN 978-5-9907171-8-3.
  13. Nikitina Yu.V. Trudnosti, voznikayushchie u roditelei detei s RAS [Difficulties that parents of children with ASD have]. In Khaustov A.V. (ed.) Organizatsiya raboty s roditelyami detei s rasstroistvami autisticheskogo spektra: Metodicheskie rekomendatsii [Organizing work with parents of children with ASD: Guidelines]. Moscow: Publ. Federal Resource Center of the Moscow State University of Psychology and Education, 2017. Pp. 6—27. ISBN 978-5-94051-164-9.
  14. Semenova E.R., Sabrekova D.N. Psikhoterapevticheskaya rabota s roditelyami, vospityvayushchimi detei s RAS, v ramkakh semeinogo soprovozhdeniya [Psychotherapeutic work with parents raising children with ASD as part of family support]. In Sokolova V.M. (ed.) Sluzhba soprovozhdeniya sem’i i rebenka. Innovatsionnyi opyt. Metodicheskii sbornik [Service for family and child support: Innovative experience: Collected guidelines]. Vladimir: Publ. Tranzit-Iks, 2010. Pp. 31—46. ISBN 978-5-8311-0474-5.
  15. Trudovye resursy, zanyatost’ i bezrabotitsa [Labor resources, employment and unemployment] [Web resource] / Federal service of state statistics. URL: https://rosstat.gov.ru/labour_force (Accessed 06.06.2022).
  16. Chebarykova S.V., Evteeva N.V., Solomenik V.V. et al. Zhizn’ na drugoi glubine: Pomoshch’ roditelyam detei s tyazhelymi narusheniyami razvitiya [Life at a different depth: Helping parents of children with severe developmental disorders]. Khabarovsk: Publ. Khabarovsk Region Institute for Development of the Professional Education System, 2019. 236 p. ISBN 978-5-906201-31-7.
  17. Churkin A.A., Martyushov A.N. Kratkoe rukovodstvo po ispol’zovaniyu MKB-10 v psikhiatrii i narkologii [A short guide to using ICD-10 in psychiatry and narcology]. Moscow: Publ. Triada-Kh, 1999. 232 p. ISBN 5-8249-0012-4.
  18. Diagnostic and statistical manual of mental disorders: DSM-5. Arlington: Publ. American Psychiatric Association, 2013. 947 p. ISBN 978-0-89042-554-1.
  19. Bohadana G., Morrissey S., Paynter J. Self-compassion: A Novel Predictor of Stress and Quality of Life in Parents of Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 2019, vol. 49, no. 10, pp. 4039— 4052. DOI:10.1007/s10803-019-04121-x
  20. Brisini K.S.C., Solomon D.H. Relational Uncertainty and Taking Conflict Personality: Comparing Parents of Children with and without Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 2020, vol. 50, no. 12, pp. 4401—4411. DOI:10.1007/s10803-020-04492-6
  21. Feldman I., Koller J., Lebowitz E.R. et al. Family Accommodation in Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 2019, vol. 49, no. 9, pp. 3602—3610. DOI:10.1007/s10803-019-04078-x
  22. Kersten M., Coxon K., Wilson N.J. “In Their Own Time”: Parents Gently Push Their Adults Youth Towards Independent Community Mobility and Participation. Journal of Autism and Developmental Disorders, 2020, vol. 50, no. 8, pp. 2806— 2818. DOI:10.1007/s10803-020-04384-9
  23. O’Nions E., Ceulemans E., Happé F. et al. Parenting Strategies Used by Parents of Children with ASD: Differential Links with Child Problems Behavior. Journal of Autism and Developmental Disorders, 2020, vol. 50, no. 2, pp. 386—401. DOI:10.1007/s10803-019-04219-2
  24. Siegel B. The politics of autism. Oxford: Publ. Oxford University Press, 2018. 350 p. ISBN 978-0-199-36099-4.

Information About the Authors

Sergey A. Morozov, PhD in Biology, Leading scientific worker of the Centre for Socialization and Personalization of Children Education, Federal Institute of Education Development of Presidential Russian Academy of National Economy and Public Administration, Moscow, Russia, ORCID: https://orcid.org/0000-0002-7354-2711, e-mail: morozov-ca@mail.ru

Svetlana G. Chigrina, Senior Research Associate, Federal Institute of Education Development, The Russian Presidential Academy of National Economy and Public Administration (RANEPA), Moscow, Russia, ORCID: https://orcid.org/0000-0002-5507-5726, e-mail: chigrina-sg@ranepa.ru

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