Comprehensive approach in providing support to individuals with autism spectrum disorder

Relevance. The rehabilitation potential of individuals with autism spectrum disorders (ASD) depends not only on early detection, but also on a high-quality and continuous support system. Systematic work is required to correct and rehabilitate the child, as well as activities to neutralise obstacles that arise in front of the family. The epistemology and praxeology of comprehensive support for children with ASD are considered in a number of methodological approaches, according to which the features and problems in the implementation of this technology are identified.
Purpose. The study of the features of the implementation of a comprehensive support of families raising children with ASD.
Materials and methods. Theoretical analysis of literature, in-depth interviews, questionnaires, statistical methods, work with documents. 
Results. The in-depth interview among parents of children with ASD (N=30) and a survey (N=39) among specialists of social service institutions and non-profit organisations were conducted. Negative features of family experience were identified, including social isolation, interpersonal tension between members and fear for the future of the child on the spectrum. Based on the results of the survey of specialists, deficiencies in the understanding of diagnostic materials. Based on the study of Russian acts and foreign experience, measures were proposed in the field of employment of persons with ASD.
Conclusions. Having analysed the regulatory framework, the individual experience of families and the activities of foreign countries in the field of comprehensive support, the importance of systematic, systematic and comprehensive management of a family raising a child with ASD was confirmed as a unique case. In the course of the work and conducting in-depth interviews among parents of children with ASD and a survey of specialists, valuable information was obtained confirming the existence of gaps in providing services.

1. Pahtusova, N. A. Kompleksnyj podhod v soprovozhdenii rebenka s rasstrojstvom autisticheskogo spektra na primere klinicheskogo sluchaya / N. A. Pahtusova, V. A. Akmaev, O. S. Nekrasova // Autizm i narusheniya razvitiya. – 2023. – T. 21, № 2. – S. 42-49. – DOI 10.17759/autdd.2023210206. – EDN HZHNQY.

2. Sistema kompleksnogo soprovozhdeniya detej s rasstrojstvami autisticheskogo spektra: regional'nyj opyt / I. A. Nigmatullina, E. A. Sadretdinova, A. R. Dolotkazina [i dr.] // Obrazovanie i samorazvitie. – 2022. – T. 17, № 3. – S. 296-316. – DOI 10.26907/esd.17.3.21. – EDN AYSIQR.

3. Modul'nyj podhod k socializacii detej s OVZ: struktura i pedagogicheskij potencial / M. A. Lazarev, O. V. Stukalova, A. A. Laskin, B. O. Surovyagin // Gumanitarnoe prostranstvo. 2024. №2. – URL: https://cyberleninka.ru/article/n/modulnyy-podhod-k-sotsializatsii-detey-s-ovz-struktura-i-pedagogicheskiy-potentsial (data obrashcheniya: 10.09.2024).

4. Rannyaya pomoshch' v sisteme kompleksnogo soprovozhdeniya detej s RAS i ih semej v Permskom krae / V. A. Bronnikov, M. I. Grigor'eva, N. G. Vajtulevichyus, V. Yu. Serebryakova // Autizm i narusheniya razvitiya. – 2022. – T. 20, № 1. – S. 20-28. – DOI 10.17759/autdd.2022200103. – EDN FRLSYX.

5. Starikova, O. V. Primenenie programmy rannej pomoshchi na osnove Denverskoj modeli rannego vmeshatel'stva dlya detej s RAS / O. V. Starikova, V. V. Dvoryaninova, O. V. Balandina // Autizm i narusheniya razvitiya. – 2022. – T. 20, № 1. – S. 29-36. – DOI 10.17759/autdd.2022200104. – EDNMJLHVJ.

6. Rossijskaya Federaciya. Zakony. Ob Obrazovanii v Rossijskoj Federacii : Federal'nyj Zakon № 273-FZ : [prinyat Gosudarstvennoj Dumoj 21 dekabrya 2012 goda : odobren Sovetom Federacii 26 dekabrya 2012 goda]. – URL: http://www.consultant.ru/document/cons_doc_LAW_140174/

7. Kozunova, G. L. Neterpimost' k neopredelennosti i trudnosti prinyatiya reshenij u vzroslyh lyudej s vysokofunkcional'nym autizmom / G. L. Kozunova, A. Yu. Novikov, T. A. Stroganova, V. V. Chernyshev // Klinicheskaya i special'naya psihologiya. – 2022. – Tom 11. – № 4. – S. 30–69. – URL: DOI: 10.17759/cpse.2022110402 (data obrashcheniya: 10.09.2024).

8. Ekstrabiliti: metodika inklyuzivnogo vzaimodejstviya nezryachih lyudej : monografiya / K. V. Barannikov, O. B. Kolpashchikov, S. T. Kohan [i dr.] ; pod red. S. T. Kohana ; Zabajkal'skij gosudarstvennyj universitet. – Chita : ZabGU, 2020. – 313 s.

9. Chistyakova, S. P. Uchastie social'no orientirovannyh nekommercheskih organizacij v obespechenii social'noj zashchity detej-invalidov i chlenov ih semej v Permskom krae / S. P. Chistyakova // Aktual'nye problemy razvitiya chelovecheskogo potenciala v sovremennom obshchestve : Materialy VIII Vserossijskoj (s mezhdunarodnym uchastiem) nauchno-prakticheskoj konferencii, Perm', 07–08 dekabrya 2021 goda. – Perm': Permskij gosudarstvennyj nacional'nyj issledovatel'skij universitet, 2021. – S. 101-106. – EDN QYLZLZ.

10. Postanovlenie Pravitel'stva Rossijskoj Federacii ot 16.08.2024 g. №1099 “Ob utverzhdenii primernyh trebovanij k organizacii i osushchestvleniyu rannej pomoshchi detyam i ih sem'yam”. – URL: TMHFtUUJsRnrbq6zpmjIKowoIMKMq861.pdf (data obrashcheniya: 10.09.2024).

11. Rasporyazhenie Pravitel'stva Rossijskoj Federacii ot 02.09.2024 g. №2401-r. – URL: UTeSmyLYW4Y1koQrPPugkRAtLkHgcAj5.pdf (data obrashcheniya: 10.09.2024).

12. Kozhushko, L. A., and I. G. Kantysheva. \"SOPROVOZhDAEMOE PROZhIVANIE: PROBLEMY I PUTI REShENIYa.\" Rannyaya pomoshch' i soprovozhdenie: sbornik statej ezhegodnoj nauchno-prakticheskoj konferencii, Sankt-Peterburg, 20 sentyabrya 2023 goda/Mintrud Rossii; Glav. red. chlenkorr. RAN, d-r med. nauk, prof. GN Ponomarenko; red. kollegiya: kand. psi-hol. nauk, VV Lorer, SV Mal'kova, KN Petrishcheva].–SPb.: FGBU FNOC MSE i R im. GA Al'brekhta», 2023.–235 s., p. 223. 2023.

13. Rossijskaya Federaciya. Zakony. Ob osnovah social'noj zashchity invalidov v Rossijskoj federacii : Federal'nyj zakon № 181-FZ (poslednyaya redakciya): [prinyat Gosudarstvennoj dumoj 20 iyulya 1995 goda : odobren Sovetom Federacii 15 noyabrya 1995 goda].

14. DSM-5 American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). – URL: https://doi.org/10.1176/appi.books.9780890425596 (data obrashcheniya: 10.11.2024).

15. Global prevalence of autism: A systematic review update. Zeidan J et al. Autism Research 2022 March.

16. Rfat, M., Koçak, O. and Uzun, B., 2023. Parenting challenges in families of children with a diagnosis of autism spectrum disorder: A qualitative research study in Istanbul. Global Social Welfare, pp.1-10. – URL: https://link.springer.com/article/10.1007/s40609-023-00270-1 (data obrashcheniya: 10.11.2024).

17. Efstratopoulou, M., Sofologi, M., Giannoglou, S. and Bonti, E., 2022. Parental stress and children’s self-regulation problems in families with children with autism spectrum disorder (ASD). Journal of Intelligence, 10(1), p.4. – URL: https://www.mdpi.com/2079-3200/10/1/4 (data obrashcheniya: 10.09.2024).

18. Sam-Njogu, Sara. \"STOPPING THE SPREAD: CRITICAL DISABILITY THEORY TREATMENT OF THE ATTACK ON DISPARATE IMPACT DISCRIMINATION CLAIMS.\" Western New England Law Review 46, no. 1 (2024): 55.

19. Schwartzman, J.M. and Corbett, B.A., 2024. Depression and employment outcomes in autistic adults: A systematic review. Review Journal of Autism and Developmental Disorders, 11(1), pp.157-171. – URL: https://link.springer.com/article/10.1007/s40489-022-00331-9 (data obrashcheniya 01.09.24)

20. Ashworth, M., Heasman, B., Crane, L. and Remington, A., 2024. Evaluating a new supported employment internship programme for autistic young adults without intellectual disability. Autism, 28(8), pp.1934-1946. – URL: https://journals.sagepub.com/doi/abs/10.1177/13623613231214834 (data obrashcheniya 01.09.24)