Research on Relationships within a Family Having a Child with Autism, and Family Relations with the Social Environment

The child’s autism significantly changes many areas of his family’s life and the family’s relationship with the social en­vironment. We studied how the presence of a child with autism spectrum disorder (ASD) affects relationships within the family, the interaction of such a family with relatives, friends, and strangers. A survey of parents of children with autism was conducted in 43 regions of the Russian Federation. The answers from 604 questionnaires to the questions were analyzed: “When it turned out that your child had ASD, how did this affect mutual understanding in the family? How did the next of kin, friends, react to this? How often is your child’s behavior perceived in public? “In all cases, the changes were different, but if positive reactions prevailed in the family, relatives and friends (45.1%, 67.1% and 61.5%, respectively), then outsiders reacted negatively in 68.2% of cases (avoidance, condemnation, rejection). It has been shown that the main cause of intra-family difficulties is the peculiarities of the child’s behavior, problems of up­bringing, a shortage of qualified assistance and — to a much lesser extent — financial problems. It was concluded that the difficulties of interaction with society increase as the range of social relations expands and are due to a low level of awareness of autism and related issues. Educational work and training of parents and family members of a child with ASD are considered as the main way to overcome the identified difficulties.

1. Bogdashina O. Rasstroistva autisticheskogo spektra: vvedenie v problemu [Autism spectrum disorders: Introduction to the problem]. Krasnoyarsk: Publ. Krasnoyarsk State Pedagogical University, 2012. 247 p. ISBN 978-5-85981-514-2.
2. Cohen Sh. Kak zhit’ s autizmom [Targeting Autism]. Moscow: Publ. Institut obshchegumanitarnykh issledovanii, 2008. 238 p. ISBN 978-5-88230-232-9.
3. Manelis N.G., Volgina N.N., Nikitina Yu.V. et al. Organizatsiya raboty s roditelyami detei s rasstroistvami autisticheskogo spektra: Metodicheskie rekomendatsii [Organizing work with parents of autistic children: Guidelines] / A.V. Khaustov (ed.). Moscow: Publ. Federal Resource Center of the Moscow State University of Psychology and Education, 2017. 94 p. ISBN 978-5-94051-164-9.
4. Morozov S.A. Kompleksnoe soprovozhdenie lits s rasstroistvami autisticheskogo spektra: uchebno-metodicheskoe posobie [Comprehensive support for people with autism spectrum disorders: Guidelines]. Moscow, 2015. 540 p. ISBN 978-5- 9907171-8-3.
5. 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
6. Morozov S.A., Chigrina S.G. Research of Characteristics of Families Raising Children with ASD. Autizm i narusheniya razvitiya = Autism and Developmental Disorders (Russia), 2022, vol. 20, no. 2, pp. 78—84. DOI:10.17759/autdd.2022200209
7. Morozova S.S. Study of the Child Autism’s Impact on a Family Budget. Autizm i narusheniya razvitiya = Autism and Developmental Disorders (Russia), 2022, vol. 20, no. 3, pp. 39—45. DOI:10.17759/autdd.2022200304
8. Morozova S.S., Morozov S.A. Autizm: pervye priznaki: Kratkaya annotatsiya k “First Signs”, videofil’mu o rannei diagnostike autizma [Autism: first signs. A short annotation for “First Signs” a film on early autism diagnostic]. Moscow, 2002. 14 р.
9. Nikitina Yu.V. Trudnosti, voznikayushchie u roditelei detei s RAS [Difficulties that parents of children with ASD face]. In Khaustov A.V. (ed.) Organizatsiya raboty s roditelyami detei s rasstroistvami autisticheskogo spektra: Metodicheskie rekomendatsii [Organizing work with parents of autistic children: 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.
10. 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-wide support]. In Sokolova V.M. (ed.) Sluzhba soprovozhdeniya sem’i i rebenka: Innovatsionnyi opyt: Metodicheskii sbornik [Support service for the family and the child: Innovative experience: Teaching guidelines]. Vladimir: Publ. Tranzit-Iks, 2010. Pp. 31—46. ISBN 978-5-8311-0474-5.
11. 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
12. 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
13. Rogge N., Janssen J. The Economic Cost of Autism Spectrum Disorder: A Literature Review. Journal of Autism and Developmental Disorders, 2019, vol. 49, no. 7, pp. 2873—2900. DOI:10.1007/s10803-019-04014-z
14. Rosen N.E., Lord C., Volkmar F.R. The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and beyond. Journal of Autism and Developmental Disorders, 2021, vol. 51, no. 12, pp. 4253—4270. DOI:10.1007/s10803-021-04904-1
15. Volkmar F.R., Wiesner L.A. A Practical Guide to Autism: What Every Parent, Family Member, and Teacher Needs to Know. London: Publ. Wiley, 2009. 610 p. ISBN 978-0-4703-9473-1.