Awareness of Parents about the Disease of Children with Autism Spectrum Disorders

This article is concerned with the issue of parental awareness of the illness of children with autism spectrum disorders. Lack of awareness of treatment options and its limitations, rehabilitation issues can cause psychological problems in the child’s parents, such as anxiety and stress from the diagnosis. The aim of the pilot study is to determine the parents' awareness of the disease of children with autism spectrum disorders in the early stages of consulting a doctor. To achieve this goal, a specially designed questionnaire was used to determine the level of awareness of the disease, treatment methods, parents` own role, etc. The study showed that most parents of children with autism spectrum disorders evaluate their knowledge as not satisfactory enough. A quarter of parents reported a lack of objective knowledge about the problem of autism in children, the second quarter of parents noted that they have sufficient knowledge about the illness of children and do not need additional information. At the same time, regardless of the level of awareness of the child’s illness, 80% of parents say that they need additional information about the child’s illness, ways and forms of helping him, as well as attending specially organized psycho-educational meetings. The results of this study allow develop effective individualized psycho-educational programs for parents (raising awareness of the problem) aimed at reducing anxiety and stabilizing the emotional background in a family raising a child with autism spectrum disorders.

1. Bogacheva O.I., Ivanov M.V. Osobennosti materinskogo otnosheniya k bolezni detei s rasstroistvami autisticheskogo spektra [Distinctions of mothers’ attitude towards illness of children with autism spectrum disorders]. Voprosy psikhicheskogo zdorov'ya detei i podrostkov [Questions of psychological development of children and adolescents]. 2019, no. 3 (19), pp. 21–29.
2. Vysotina T.N. Osobennosti roditel'skogo otnosheniya k detyam s atipichnym autizmom: diss. ... kand. psikhol. nauk [Distinctions of parents’ attitude towards children with atypical autism. Candidate of Sciences in Psychology dissertation]. Saint Petersburg, 2013. 162 p.
3. Golubkova M. Vrach prevrashchaetsya: Kontseptsiya 4P-meditsiny potrebuet perestroiki sistemy professional'nogo obrazovaniya [The doctor transforming: The concept of 4P medicine will require rebuilding the system of professional education]. Rossiiskaya gazeta [Russian Gazette] [Web resource].  URL: https://rg.ru/2018/12/05/koncepciia-4p-mediciny-potrebuet-perestrojki-sistemy-profobrazovaniia.html (Accessed 29.11.2019).
4. Gurovich I.Ya. Sberegayushchaya (preventivnaya) psikhosotsial'naya reabilitatsiya [Conserving (preventive) psychosocial rehabilitation]. Sotsial'naya i klinicheskaya psikhiatriya [Social and clinical psychiatry]. 2007, vol. 17, no. 1, pp. 5–9.
5. Isaev D.N. Otnoshenie roditelei i bolezn' rebenka [Parents’ relationship and illness of the child]. In Dobryakov I.V., Zashchirinskaya O.V. (comp.) Psikhologiya sem'i i bol'noi rebenok. Uchebnoe posobie: Khrestomatiya [Psychology of the family and the ill child. Manual: Anthology]. Saint Petersburg: Publ. Rech', 2007. ISBN 5-9268-0560-0. P. 150.
6. Kovalev V.V. Voprosy deontologii detskogo i podrostkovogo vozrasta [Questions of deontology of childhood and adolescence]. Zhurnal nevropatologii i psikhiatrii imeni S.S. Korsakova [Journal of neurology and psychology dedicated to S.S. Korsakov]. 1988, vol. 88, no. 8, pp. 3–7.
7. Koren' E.V., Kupriyanova T.A. Semeinoe bremya kak mishen' psikhosotsial'noi reabilitatsii detei i podrostkov s psikhicheskimi rasstroistvami [Family burden as a target of psychosocial rehabilitation of children and adolescents with mental disorders]. Zhurnal nevrologii i psikhiatrii imeni S.S. Korsakova. Spetsvypuski [Journal of neurology and psychology dedicated to S.S. Korsakov. Special issues]. 2013, vol. 113, no. 5, pp. 61–68.
8. Krasil'nikova E.D. Psikhologicheskie osobennosti semei, vospityvayushchikh detei s razlichnymi variantami narushenii psikhicheskogo razvitiya [Psychological distinctions of families raising children with different kinds of disruptions of psychological development]. Voprosy psikhicheskogo zdorov'ya detei i podrostkov [Questions of psychological development of children and adolescents]. 2012, no. 2 (12), pp. 114–123.
9. L'vova D.P., Khal'fin R.A., Syrtsova L.E., Allenov A.M. Razvitie form vzaimodeistviya meditsinskikh spetsialistov s patsientami [Patient-oriented and participatory approaches to improve patient relationships with healthcare providers]. Rossiiskii psikhiatricheskii zhurnal [Russian journal of psychiatry]. 2018, no. 5, pp. 10–18. doi:10.24411/1560-957X-2018-1%25x.
10. Nikol'skaya O.S., Baenskaya E.R., Libling M.M. Autichnyi rebenok. Puti pomoshchi [Autistic child. Ways of support]. Moscow: Publ. Terevinf, 2014. 288 p. ISBN 978-5-4212-0186-1.
11.  Oficial'nyj sajt Organizacii Ob#edinennyh Nacij. Rezoljucija A/RES/62/139. Vsemirnyj den' rasprostranenija informacii o probleme autizma [Elektronnyi resurs] [Resolution A / RES / 62/139. World Autism Awareness Day]. 62 sessija General'noj assamblei OON ot 18 dekabrja 2007 goda. URL:https://www.un.org/ru/ga/62/docs/62res2.shtml (Accessed: 27.06.2019) (In Russ.)
12. Salnikova L.I., Movina L.G. Karta otsenki urovnya znaniy o psikhicheskoy bolezni i effektivnosti psikhoobrazovatel'noy programmy [The assessment scheme of level of knowledge about mental illness and the effectiveness of a psycho-educational program] In book: Praktikum po psikhosotsial'nomu lecheniyu i psikhosotsial'noy reabilitatsii psikhicheski bol'nykh [Workshop on psychosocial treatment and psychosocial rehabilitation of patients with mental disorders]. Eds. I.Ya. Gurovich and A.B. Shmuklera. Moscow: Medpraktika-M, 2002. pp. 109–111. (In Russ.)
13. Churkin A.A., Martyushov A.N. Prakticheskoye rukovodstvo po primeneniyu MKB-10 v psikhiatrii i narkologii [A practical guide to the use of ICD-10 in psychiatry and narcology]. Moscow: Center them. V.P. Serbsky, 2010. 132 p. (In Russ.)
14. Shabanova E.V. Vnutrisemejnoe funkcionirovanie i psihologicheskie zashhity roditelej, vospityvajushhih rebenka s rasstrojstvom autisticheskogo spectra [Family relationships and psychological defenses of parents of children with autism spectrum disorder]. Vestnik Sankt-Peterburgskogo universiteta [Vestnik of Saint Petersburg University]. Serija 12. Psihologija. Sociologija. Pedagogika. 2014, № 4, pp. 51–57. (In Russ., Abstr. in Engl.)
15. Cachia R.L., Anderson A., Moore D.W. Mindfulness, Stress and Well-Being in Parents of Children with Autism Spectrum Disorder: A Systematic Review. Journal of Child and Family Studies. 2016. 25: 1. https://doi.org/10.1007/s10826-015-0193-8
16. Christiansz J.A., Gray K.M., Taffe J. Tonge B.J. Autism Spectrum Disorder in the DSM-5: Diagnostic Sensitivity and Specificity in Early Childhood. Journal of Autism and Developmental Disorders. 2016. 46 (6): 2054-2063. https://doi.org/10.1007/s10803-016-2734-4
17. Simashkova N.V., Boksha I.S., Klyushnik T.P., Iakupova L.P., Ivanov M.V., Mukaetova-Ladinska E.B. Diagnosis and Management of Autism Spectrum Disorders in Russia: Clinical-Biological Approaches. Journal of Autism and Developmental Disorders. 2019. 49 (9): 3906-3914. https://doi.org/10.1007/s10803-019-04071-4