Famílias com crianças autistas na literatura internacional

Fernandes, Fernanda Dreux Miranda

doi:10.1590/S1516-80342009000300022

Resumos

Esse artigo revisou os 39 artigos publicados nos últimos cinco anos em três periódicos (Journal of Autism and Developmental Disorders, Focus on Autism and Other Developmental Disorders e Autism) a respeito de famílias com crianças autistas. Ele aponta para cinco grandes temas abordados: estresse e dificuldades emocionais, grupos de suporte e qualidade de vida, características das famílias, perspectivas das famílias a respeito da criança autista, e resultados de intervenção.

Transtorno autístico; Família; Relações familiares; Stress; Qualidade de vida

This article reviewed the 39 papers published in the last five years in three journals (Journal of Autism and Developmental Disorders, Focus on Autism and Other Developmental Disorders and Autism) about families with autistic children. It points out to five main issues that were studied: stress and emotional disorders, support groups and quality of life, characteristics of the families, family's perspectives about the autistic child, and intervention results.

Autistic disorder; Family; Family relations; Stress; Quality of life

ARTIGO DE REVISÃO

Famílias com crianças autistas na literatura internacional

Families with autistic children: international literature

Fernanda Dreux Miranda Fernandes

Professor associado do Curso de Fonoaudiologia da Faculdade de Medicina da Universidade de São Paulo - USP - São Paulo (SP), Brasil

^{Endereço para correspondência} Endereço para correspondência: Fernanda Dreux Miranda Fernandes R. do Mangericão, 301, Granja Vianna Cotia (SP), Brasil, CEP: 06706-240 E-mail: fernandadreux@usp.br

RESUMO

Esse artigo revisou os 39 artigos publicados nos últimos cinco anos em três periódicos (Journal of Autism and Developmental Disorders, Focus on Autism and Other Developmental Disorders e Autism) a respeito de famílias com crianças autistas. Ele aponta para cinco grandes temas abordados: estresse e dificuldades emocionais, grupos de suporte e qualidade de vida, características das famílias, perspectivas das famílias a respeito da criança autista, e resultados de intervenção.

Descritores: Transtorno autístico; Família; Relações familiares; Stress; Qualidade de vida

ABSTRACT

This article reviewed the 39 papers published in the last five years in three journals (Journal of Autism and Developmental Disorders, Focus on Autism and Other Developmental Disorders and Autism) about families with autistic children. It points out to five main issues that were studied: stress and emotional disorders, support groups and quality of life, characteristics of the families, family's perspectives about the autistic child, and intervention results.

Keywords: Autistic disorder; Family; Family relations; Stress; Quality of life

INTRODUÇÃO

O autismo infantil é um distúrbio global de desenvolvimento que, por definição, envolve alterações severas e precoces nas áreas de socialização, comunicação e cognição. Os quadros resultantes são, em geral, severos e persistentes, com grandes variações individuais. Dessa forma, seu impacto nas famílias não é desprezível.

Por outro lado, a intervenção dirigida a crianças autistas precisa ser intensiva, abrangente e duradoura. Isso leva à consideração de que a participação das famílias nesse processo deveria ser um foco sistemático dos estudos e propostas de intervenção envolvendo crianças autistas.

A proposta do presente artigo é identificar, na literatura internacional especializada, qual o impacto dos estudos que envolvem famílias de crianças autistas.

Para isso foi realizada a revisão dos artigos publicados nos últimos cinco anos nos três periódicos mais tradicionais especificamente dirigidos aos estudos sobre o autismo infantil.

Os periódicos incluídos no estudo são: Journal of Autism and Developmental Disorders, Focus on Autism and Other Developmental Disorders e Autism.

Um novo periódico, Research in Autism Spectrum Disorders, começou a ser publicado em janeiro de 2007 e não será detalhadamente incluído neste estudo, pois não tem o mesmo tempo de existência dos outros.

REVISÃO DA LITERATURA

O Journal of Autism and Developmental Disorders é o mais antigo deles e, até a década de 1980, chamava-se Journal of Autism and Infantile Schizophrenia. Entre janeiro de 2005 e junho de 2009, foram publicados 39 números e um total de 746 artigos, dos quais 18 (2,4%) tiveram as famílias como tema.

O Quadro 1 sintetiza o tema, casuística, aspectos de método e conclusões desses estudos.

O periódico Focus on Autism and Other Developmental Disorders publicou, no mesmo período (de janeiro de 2005 a junho de 2009) um total de 18 números, com 121 artigos, sendo sete deles (5,7%) a respeito de famílias de crianças autistas.

O Quadro 2 sintetiza o tema, casuística, aspectos de método e conclusões desses estudos.

O jornal Autism é uma publicação da National Autistic Society e, entre janeiro de 2005 e junho de 2009, publicou 26 números, com 229 artigos, dos quais, 14 (6,1%) abordaram questões referentes às famílias de crianças autistas.

O Quadro 3 sintetiza o tema, casuística, aspectos de método e conclusões desses estudos.

O jornal Research in Autism Spectrum Disorders publicou, entre janeiro de 2007 e junho de 2009, 152 artigos, dos quais 13 (8,5%) com temas envolvendo famílias de crianças autistas. Esses artigos não são abordados na presente revisão pois o periódico tem um tempo de existência muito inferior aos outros.

DISCUSSÃO

Esse levantamento evidencia que o número de estudos envolvendo as famílias de crianças autistas não corresponde ao que seria esperado, quando se considera o impacto da criança autista na dinâmica familiar ou a importância da participação familiar para o diagnóstico e os processos de intervenção e educação. Considerando-se apenas os três periódicos com mais de cinco anos de existência, menos de 5% dos artigos publicados abordam essa temática. Por outro lado, é interessante observar que mais da metade desses artigos foram publicados nos últimos 18 meses.

Os temas desses estudos podem ser agrupados em: questões envolvendo estresse e dificuldades emocionais^{(1,10-11,13,18-19,22,25-29,35)}; grupos de apoio e qualidade de vida^{(2,12,21,23,27,33,36)}, caracterização das famílias e seus membros^{(5-6,9,20,24,36,38)}; processos de intervenção e seus resultados^{(7,14-15,17,34)}; como os pais vêem seus filhos autistas^{(3-4,8,30-32,37)}. Embora alguns artigos abordem diversos desses temas, ainda assim causa impacto o número reduzido de trabalhos envolvendo processos de intervenção, baseados nas famílias ou que incluam sua participação sistemática. Apenas cinco trabalhos descrevem ou avaliam os resultados da participação dos pais em programas terapêuticos. Dois deles^(7,15) descrevem os resultados de programas residenciais de intervenção comportamental baseados na atuação paterna, com, respectivamente, 27 e 53 participantes. Em ambos, os pais relatam bons resultados, que são melhores em programas mais longos. Outras duas pesquisas^(14,17), com 18 e 33 sujeitos respectivamente, abordam a colaboração paterna em processos de terapia, enfocando interação e habilidades sociais. Os resultados descrevem progressos e manejo de áreas de maior interesse. O último estudo tem 68 participantes e descreve um programa de intervenção residencial diário chamado floor-time, com duração entre oito e 12 meses, que apresenta bons resultados, mas tem como fator complicador o custo elevado.

COMENTÁRIOS FINAIS

Esta revisão de literatura, por fatores de espaço, limitou-se aos periódicos dedicados exclusivamente aos quadros do espectro autístico e isso seguramente constitui uma limitação. Não foram incluídos os trabalhos publicados em periódicos das áreas de Educação, Fonoaudiologia ou Psicologia, nos quais provavelmente podem ser encontrados outros estudos a respeito do tema.

Mas é seguramente um fator de destaque a pouca participação dos estudos envolvendo as famílias de crianças autistas, nos periódicos que se dedicam exclusivamente a esse distúrbio.

A sistematização dos processos de intervenção, assim como a investigação cuidadosa dessas famílias, não são tarefas simples; mas o tema certamente merece atenção dos pesquisadores da área.

Recebido em: 15/3/2009; Aceito em: 12/7/2009

Trabalho realizado no Departamento de Fisioterapia, Fonoaudiologia e Terapia Ocupacional da Faculdade de Medicina da Universidade de São Paulo - USP - São Paulo (SP), Brasil.

1. Hastings RP, Kovshoff H, Ward NJ, degli Espinosa F, Brown T, Remington B. Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. J Autism Dev Disord. 2005;35(5):635-44.
2. Siklos S, Kerns KA. Assessing need for social support in parents of children with autism and Down syndrome. J Autism Dev Disord. 2006;36(7):921-33.
3. Watson LR, Baranek GT, Crais ER, Steven Reznick J, Dykstra J, Perryman T. The first year inventory: retrospective parent responses to a questionnaire designed to identify one-year-olds at risk for autism. J Autism Dev Disord. 2007;37(1):49-61.
4. Chawarska K, Paul R, Klin A, Hannigen S, Dichtel LE, Volkmar F. Parental recognition of developmental problems in toddlers with autism spectrum disorders. J Autism Dev Disord. 2007;37(1):62-72.
5. Bhasin TK, Schendel D. Sociodemographic risk factors for autism in a US metropolitan area. J Autism Dev Disord. 2007;37(4):667-77.
6. Ruser TF, Arin D, Dowd M, Putnam S, Winklosky B, Rosen-Sheidley B, et al. Communicative competence in parents of children with autism and parents of children with specific language impairment. J Autism Dev Disord. 2007;37(7):1323-36.
7. Reed P, Osborne LA, Corness M. Brief report: relative effectiveness of different home-based behavioral approaches to early teaching intervention. J Autism Dev Disord. 2007;37(9):1815-21.
8. Clifford SM, Dissanayake C. The early development of joint attention in infants with autistic disorder using home video observations and parental interview. J Autism Dev Disord. 2008;38(5):791-805.
9. Scheeren AM, Stauder JE. Broader autism phenotype in parents of autistic children: reality or myth? J Autism Dev Disord. 2008;38(2):276-87.
10. Smith LE, Seltzer MM, Tager-Flusberg H, Greenberg JS, Carter AS. A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. J Autism Dev Disord. 2008;38(5):876-89.
11. Osborne LA, McHugh L, Saunders J, Reed P. Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. J Autism Dev Disord. 2008;38(6):1092-103.
12. Lee LC, Harrington RA, Louie BB, Newschaffer CJ. Children with autism: quality of life and parental concerns. J Autism Dev Disord. 2008;38(6):1147-60.
13. Davis NO, Carter AS. Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics. J Autism Dev Disord. 2008;38(7):1278-91.
14. Solomon M, Ono M, Timmer S, Goodlin-Jones B. The effectiveness of parent-child interaction therapy for families of children on the autism spectrum. J Autism Dev Disord. 2008;38(9):1767-76.
15. Grindle CF, Kovshoff H, Hastings RP, Remington B. Parents' experiences of home-based applied behavior analysis programs for young children with autism. J Autism Dev Disord. 2009;39(1):42-56.
16. Benson PR, Karlof KL. Anger, stress proliferation, and depressed mood among parents of children with ASD: a longitudinal replication. J Autism Dev Disord. 2009; 39(2):350-62.
17. Laugeson EA, Frankel F, Mogil C, Dillon AR. Parent-assisted social skills training to improve friendships in teens with autism spectrum disorders. J Autism Dev Disord. 2009;39(4):596-606.
18. Ekas NV, Whitman TL, Shivers C. Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorder. J Autism Dev Disord. 2009;39(5):706-19.
19. Hutton AM, Caron SL. Experiences of families with children with autism in rural New England. Focus Autism Other Dev Disabl. 2005;20(3):180-9.
20. Stoner JB, Angell ME. Parent perspectives on role engagement: an investigation of parents of children with ASDand their self-reported roles with education professionals. Focus Autism Other Dev Disabl. 2006;21(3):177-89.
21. Wiggins LD, Bakeman R, Adamson LB, Robins DL. The utility of the social communication questionnaire in screening for autism in children referred for early intervention. Focus Autism Other Dev Disabl. 2007;22(1):33-8.
22. Bird EKR, Cleave PL, Curia J. Dunleavy M. Parental talk about internal states to their child with autism. Focus Autism Other Dev Disabl. 2008;23(3):166-75.
23. Brewin BJ, Renwick R, Schormans AF. Parental perspectives of the quality of life in school environments for children with Asperger Syndrome. Focus Autism Other Dev Disabl. 2008;23(4):242-52.
24. Brobst JB, Clopton JR, Hendrick SS. Parenting children with autism spectrum disorders. Focus Autism Other Dev Disabl. 2009;24(1):38-49.
25. King G, Baxter D, Rosenbaum P, Zwaigenbaum L, Bates A. Belief systems of families of children with autism spectrum disorders or Down syndrome. Focus Autism Other Dev Disabl. 2009;24(1):50-64.
26. Pakenham KI, Samios C, Sofronoff K. Adjustment in mothers of children with Asperger syndrome: an application of the double ABCX model of family adjustment. Autism. 2005;9(2):191-212.
27. Honey E, Hastings RP, McConachie H. Use of the questionnaire on resources and stress (QRS-F) with parents of young children with autism. Autism. 2005;9(3):246-55.
28. Hastings RP, Kovshoff H, Brown T, Ward NJ, Espinosa FD, Remington B. Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism. 2005;9(4):377-91.
29. Duarte CS, Bordin IA, Yazigi L, Mooney J. Factors associated with stress in mothers of children with autism. Autism. 2005;9(4):416-27.
30. Ozonoff S, Williams BJ, Landa R. Parental report of the early development of children with regressive autism: the delays-plus-regression phenotype.Autism. 2005;9(5):461-86.
31. Williams E, Kendell-Scott L, Costall A. Parents' experiences of introducing everyday object use to their children with autism. Autism. 2005;9(5):495-514.
32.Harrington JW, Patrick PA, Edwards KS, Brand DA. Parental beliefs about autism: implications for the treating physician. Autism. 2006;10(5):452-62.
33. Mandell DS, Salzer MS. Who joins support groups among parents of children with autism? Autism. 2007;11(2):111-22.
34.Solomon R, Necheles J, Ferch C, Bruckman D. Pilot study of a parent training program for young children with autism: the PLAY Project Home Consultation program. Autism. 2007;11(3):205-24.
35. Hamlyn-Wright S, Draghi-Lorenz R, Ellis J. Locus of control fails to mediate between stress and anxiety and depression in parents of children with a developmental disorder. Autism. 2007;11(6):489-501.
36. Benson P, Karlof KL, Siperstein GN. Maternal involvement in the education of young children with autism spectrum disorders. Autism. 2008;12(1):47-63.
37. Osborne LA, Reed P. Parents' perceptions of communication with professionals during the diagnosis of autism. Autism. 2008;12(3):309-24.
38. Wachtel K, Carter AS. Reaction to diagnosis and parenting styles among mothers of young children with ASDs. Autism. 2008;12(5):575-94.
39.Shu BC.Quality of life of family caregivers of children with autism: The mother's perspective. Autism. 2009;13(1):81-91.

Endereço para correspondência:

Fernanda Dreux Miranda Fernandes

R. do Mangericão, 301, Granja Vianna

Cotia (SP), Brasil, CEP: 06706-240

E-mail:

fernandadreux@usp.br

Datas de Publicação

Publicação nesta coleção
16 Out 2009
Data do Fascículo
2009

Histórico

Recebido
15 Mar 2009
Aceito
12 Jul 2009

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

[1] 1. Hastings RP, Kovshoff H, Ward NJ, degli Espinosa F, Brown T, Remington B. Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. J Autism Dev Disord. 2005;35(5):635-44.

[2] 2. Siklos S, Kerns KA. Assessing need for social support in parents of children with autism and Down syndrome. J Autism Dev Disord. 2006;36(7):921-33.

[3] 3. Watson LR, Baranek GT, Crais ER, Steven Reznick J, Dykstra J, Perryman T. The first year inventory: retrospective parent responses to a questionnaire designed to identify one-year-olds at risk for autism. J Autism Dev Disord. 2007;37(1):49-61.

[4] 4. Chawarska K, Paul R, Klin A, Hannigen S, Dichtel LE, Volkmar F. Parental recognition of developmental problems in toddlers with autism spectrum disorders. J Autism Dev Disord. 2007;37(1):62-72.

[5] 5. Bhasin TK, Schendel D. Sociodemographic risk factors for autism in a US metropolitan area. J Autism Dev Disord. 2007;37(4):667-77.

[6] 6. Ruser TF, Arin D, Dowd M, Putnam S, Winklosky B, Rosen-Sheidley B, et al. Communicative competence in parents of children with autism and parents of children with specific language impairment. J Autism Dev Disord. 2007;37(7):1323-36.

[7] 7. Reed P, Osborne LA, Corness M. Brief report: relative effectiveness of different home-based behavioral approaches to early teaching intervention. J Autism Dev Disord. 2007;37(9):1815-21.

[8] 8. Clifford SM, Dissanayake C. The early development of joint attention in infants with autistic disorder using home video observations and parental interview. J Autism Dev Disord. 2008;38(5):791-805.

[9] 9. Scheeren AM, Stauder JE. Broader autism phenotype in parents of autistic children: reality or myth? J Autism Dev Disord. 2008;38(2):276-87.

[10] 10. Smith LE, Seltzer MM, Tager-Flusberg H, Greenberg JS, Carter AS. A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. J Autism Dev Disord. 2008;38(5):876-89.

[11] 11. Osborne LA, McHugh L, Saunders J, Reed P. Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. J Autism Dev Disord. 2008;38(6):1092-103.

[12] 12. Lee LC, Harrington RA, Louie BB, Newschaffer CJ. Children with autism: quality of life and parental concerns. J Autism Dev Disord. 2008;38(6):1147-60.

[13] 13. Davis NO, Carter AS. Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: associations with child characteristics. J Autism Dev Disord. 2008;38(7):1278-91.

[14] 14. Solomon M, Ono M, Timmer S, Goodlin-Jones B. The effectiveness of parent-child interaction therapy for families of children on the autism spectrum. J Autism Dev Disord. 2008;38(9):1767-76.

[15] 15. Grindle CF, Kovshoff H, Hastings RP, Remington B. Parents' experiences of home-based applied behavior analysis programs for young children with autism. J Autism Dev Disord. 2009;39(1):42-56.

[16] 16. Benson PR, Karlof KL. Anger, stress proliferation, and depressed mood among parents of children with ASD: a longitudinal replication. J Autism Dev Disord. 2009; 39(2):350-62.

[17] 17. Laugeson EA, Frankel F, Mogil C, Dillon AR. Parent-assisted social skills training to improve friendships in teens with autism spectrum disorders. J Autism Dev Disord. 2009;39(4):596-606.

[18] 18. Ekas NV, Whitman TL, Shivers C. Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorder. J Autism Dev Disord. 2009;39(5):706-19.

[19] 19. Hutton AM, Caron SL. Experiences of families with children with autism in rural New England. Focus Autism Other Dev Disabl. 2005;20(3):180-9.

[20] 20. Stoner JB, Angell ME. Parent perspectives on role engagement: an investigation of parents of children with ASDand their self-reported roles with education professionals. Focus Autism Other Dev Disabl. 2006;21(3):177-89.

[21] 21. Wiggins LD, Bakeman R, Adamson LB, Robins DL. The utility of the social communication questionnaire in screening for autism in children referred for early intervention. Focus Autism Other Dev Disabl. 2007;22(1):33-8.

[22] 22. Bird EKR, Cleave PL, Curia J. Dunleavy M. Parental talk about internal states to their child with autism. Focus Autism Other Dev Disabl. 2008;23(3):166-75.

[23] 23. Brewin BJ, Renwick R, Schormans AF. Parental perspectives of the quality of life in school environments for children with Asperger Syndrome. Focus Autism Other Dev Disabl. 2008;23(4):242-52.

[24] 24. Brobst JB, Clopton JR, Hendrick SS. Parenting children with autism spectrum disorders. Focus Autism Other Dev Disabl. 2009;24(1):38-49.

[25] 25. King G, Baxter D, Rosenbaum P, Zwaigenbaum L, Bates A. Belief systems of families of children with autism spectrum disorders or Down syndrome. Focus Autism Other Dev Disabl. 2009;24(1):50-64.

[26] 26. Pakenham KI, Samios C, Sofronoff K. Adjustment in mothers of children with Asperger syndrome: an application of the double ABCX model of family adjustment. Autism. 2005;9(2):191-212.

[27] 27. Honey E, Hastings RP, McConachie H. Use of the questionnaire on resources and stress (QRS-F) with parents of young children with autism. Autism. 2005;9(3):246-55.

[28] 28. Hastings RP, Kovshoff H, Brown T, Ward NJ, Espinosa FD, Remington B. Coping strategies in mothers and fathers of preschool and school-age children with autism. Autism. 2005;9(4):377-91.

[29] 29. Duarte CS, Bordin IA, Yazigi L, Mooney J. Factors associated with stress in mothers of children with autism. Autism. 2005;9(4):416-27.

[30] 30. Ozonoff S, Williams BJ, Landa R. Parental report of the early development of children with regressive autism: the delays-plus-regression phenotype.Autism. 2005;9(5):461-86.

[31] 31. Williams E, Kendell-Scott L, Costall A. Parents' experiences of introducing everyday object use to their children with autism. Autism. 2005;9(5):495-514.

[32] 32.Harrington JW, Patrick PA, Edwards KS, Brand DA. Parental beliefs about autism: implications for the treating physician. Autism. 2006;10(5):452-62.

[33] 33. Mandell DS, Salzer MS. Who joins support groups among parents of children with autism? Autism. 2007;11(2):111-22.

[34] 34.Solomon R, Necheles J, Ferch C, Bruckman D. Pilot study of a parent training program for young children with autism: the PLAY Project Home Consultation program. Autism. 2007;11(3):205-24.

[35] 35. Hamlyn-Wright S, Draghi-Lorenz R, Ellis J. Locus of control fails to mediate between stress and anxiety and depression in parents of children with a developmental disorder. Autism. 2007;11(6):489-501.

[36] 36. Benson P, Karlof KL, Siperstein GN. Maternal involvement in the education of young children with autism spectrum disorders. Autism. 2008;12(1):47-63.

[37] 37. Osborne LA, Reed P. Parents' perceptions of communication with professionals during the diagnosis of autism. Autism. 2008;12(3):309-24.

[38] 38. Wachtel K, Carter AS. Reaction to diagnosis and parenting styles among mothers of young children with ASDs. Autism. 2008;12(5):575-94.

[39] 39.Shu BC.Quality of life of family caregivers of children with autism: The mother's perspective. Autism. 2009;13(1):81-91.