<abstract xmlns="http://www.w3.org/1999/xhtml"><p>Delays and difficulties in both diagnosis and access to services can compound existing stressors experienced by families with children with autism spectrum disorder. Early and accurate diagnosis and appropriate intervention may not only improve child-specific outcomes but may also mitigate some of the stressors impacting family relationships and quality of life. We aimed to understand the experience of over 500 families that had sought autism spectrum disorder diagnosis and intervention, their perceptions of the efficacy of these services, and the impact that this process had on their family life. Parents overwhelmingly described frustration with access to a timely diagnosis, specialized intervention services, and funding that impacted their family life and relationships. However, parents simultaneously reported positive perceptions of change as a consequence of diagnosis and effective intervention.</p></abstract>

Delays and difficulties in both diagnosis and access to services can compound existing stressors experienced by families with children with autism spectrum disorder. Early and accurate diagnosis and appropriate intervention may not only improve child-specific outcomes but may also mitigate some of the stressors impacting family relationships and quality of life. We aimed to understand the experience of over 500 families that had sought autism spectrum disorder diagnosis and intervention, their perceptions of the efficacy of these services, and the impact that this process had on their family life. Parents overwhelmingly described frustration with access to a timely diagnosis, specialized intervention services, and funding that impacted their family life and relationships. However, parents simultaneously reported positive perceptions of change as a consequence of diagnosis and effective intervention.

An exploration of the experience of parents with children with autism spectrum disorder after diagnosis and intervention

Scandinavian Journal of Child and Adolescent Psychiatry and Psychology

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

Delays and difficulties in both diagnosis and access to services can compound existing stressors experienced by families with children with autism spectrum...

	N	%
Total	521
Respondent
Biological mother	421	81
Biological father	87	17
Grandparent	5	0.96
Foster parent	4	0.77
Step parent	1	0.2
Other	1	0.2
Child
Age [mean (SD)] (years)	9.92 (4.17)
Male	431	83
Female	90	17
Diagnosis
Autism	272	52.60
High functioning autism	128	24.70
PDD-NOS	76	14.70
Asperger syndrome	36	7
Other	7	1.40
CDD	2	0.40

	Frequency	%^{†Based on valid responses only.}
Intervention has improved family life
Not at all	43	10
Neutral	81	18.8
Yes somewhat	159	36.8
Yes definitely	149	34.5
Total^{‡Total excluding missing responses}	432	100
Would earlier access to intervention have led to more improvement in child’s QoL
Not at all	39	8.5
Neutral	60	13
Yes somewhat	94	20.4
Yes definitely	267	58
Total^{‡Total excluding missing responses}	460	100

An exploration of the experience of parents with children with autism spectrum disorder after diagnosis and intervention

Article Category: research-article

Online veröffentlicht: 22. Dez. 2017

Seitenbereich: 104 - 110

DOI: https://doi.org/10.21307/sjcapp-2017-014

Schlüsselwörter
autism, diagnosis, services, family, qualitative

© 2017 Ben Milbourn et al., published by Sciendo

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

FIGURE 1.

Characteristics of respondents of the questionnaire

Frequency responses for Likert scale components of questions

An exploration of the experience of parents with children with autism spectrum disorder after diagnosis and intervention

Article Category: research-article

Online veröffentlicht: 22. Dez. 2017

Seitenbereich: 104 - 110

DOI: https://doi.org/10.21307/sjcapp-2017-014

Schlüsselwörterautism, diagnosis, services, family, qualitative

© 2017 Ben Milbourn et al., published by Sciendo

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

FIGURE 1.

Characteristics of respondents of the questionnaire

Frequency responses for Likert scale components of questions

Schlüsselwörter
autism, diagnosis, services, family, qualitative