Dataset Information

Pathways to a diagnosis of autism spectrum disorder in Germany: a survey of parents.

ABSTRACT:

Background

Early identification of autism spectrum disorders (ASD) is a prerequisite for access to early interventions. Although parents often note developmental atypicalities during the first 2 years of life, many children with ASD are not diagnosed until school age. For parents, the long period between first parental concerns and diagnosis is often frustrating and accompanied by uncertainty and worry.

Methods

This study retrospectively explored the trajectories of children with a confirmed ASD diagnosis during the diagnostic process, from first parental concerns about their child's development until the definite diagnosis. A survey concerning the diagnostic process was distributed to parents or legal guardians of children with ASD from three specialized ASD outpatient clinics in Germany.

Results

The response rate was 36.9%, and the final sample consisted of carers of 207 affected children (83.6% male, mean age 12.9 years). The children had been diagnosed with childhood autism (55.6%), Asperger syndrome (24.2%), or atypical autism (20.3%). On average, parents had first concerns when their child was 23.4 months old, and an ASD diagnosis was established at a mean age of 78.5 months. Children with atypical autism or Asperger syndrome were diagnosed significantly later (83.9 and 98.1 months, respectively) than children with childhood autism (68.1 months). Children with an IQ?ConclusionsIn this sample of children with ASD in Germany, the time to diagnosis was higher than in the majority of other comparable studies. These results flag the need for improved forms of service provision and delivery for suspected cases of ASD in Germany.

SUBMITTER: Hofer J

PROVIDER: S-EPMC6429704 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Publications

Pathways to a diagnosis of autism spectrum disorder in Germany: a survey of parents.

Höfer Juliana J Hoffmann Falk F Kamp-Becker Inge I Poustka Luise L Roessner Veit V Stroth Sanna S Wolff Nicole N Bachmann Christian J CJ

Child and adolescent psychiatry and mental health 20190321

<h4>Background</h4>Early identification of autism spectrum disorders (ASD) is a prerequisite for access to early interventions. Although parents often note developmental atypicalities during the first 2 years of life, many children with ASD are not diagnosed until school age. For parents, the long period between first parental concerns and diagnosis is often frustrating and accompanied by uncertainty and worry.<h4>Methods</h4>This study retrospectively explored the trajectories of children with ...[more]

PMID: 30949235

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Project description:BackgroundIn recent years, parent-mediated intervention for children with autism spectrum disorder (ASD) has increased. Therefore, implementing effective parent training programs for parents of children with autism is of paramount importance, particularly in low- and middle-income countries. However, little is known about the status of and gaps in parents' knowledge on ASD, which may hinder the development of valid parental training programs. Herein, we aimed at exploring the status of Chinese parents' knowledge, attitude and behavior toward ASD, and potential factors affecting the acquisition of correct knowledge.MethodsThis study used a self-designed parental knowledge questionnaire of autism (PKQA) comprising 20 questions alongside another questionnaire comprising additional 17 questions covering the aspects of family demographics, attitudes, and behaviors of parents. In total, we included 394 parents who visited the outpatient department of the Child's Development and Behavior Center of the Third Affiliated Hospital of Sun Yat-Sen University between December 2018 and May 2019, with their children meeting the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) diagnostic criteria for ASD.ResultsThe median knowledge score in the PKQA was 15 [interquartile range (IQR), 13-17]. Advanced paternal age and longer time interval from diagnosis to enrolling into the parent training program were associated with a lower total knowledge score (all P<0.001). Higher maternal education attainment, higher family income, child being currently under intervention, and family members sharing a common perception of the diagnosis were associated with a higher total knowledge score (all P<0.01). Reading autism-related books (P<0.001) or attending professional lectures (P=0.019) were also associated with a higher total knowledge score.ConclusionsTaken together, this study revealed that family demographics and parents' attitudes and behaviors toward ASD may significantly influence their knowledge about autism, suggesting the need for promoting more targeted parental skills training programs.

Project description:BACKGROUND: Introduction of proposed criteria for DSM-5 Autism Spectrum Disorder (ASD) has raised concerns that some individuals currently meeting diagnostic criteria for Pervasive Developmental Disorder (PDD; DSM-IV-TR/ICD-10) will not qualify for a diagnosis under the proposed changes. To date, reports of sensitivity and specificity of the new criteria have been inconsistent across studies. No study has yet considered how changes at the 'sub domain' level might affect overall sensitivity and specificity, and few have included individuals of different ages and ability levels. METHODS: A set of DSM-5 ASD algorithms were developed using items from the Diagnostic Interview for Social and Communication Disorders (DISCO). The number of items required for each DSM-5 subdomain was defined either according to criteria specified by DSM-5 (Initial Algorithm), a statistical approach (Youden J Algorithm), or to minimise the number of false positives while maximising sensitivity (Modified Algorithm). The algorithms were designed, tested and compared in two independent samples (Sample 1, N = 82; Sample 2, N = 115), while sensitivity was assessed across age and ability levels in an additional dataset of individuals with an ICD-10 PDD diagnosis (Sample 3, N = 190). RESULTS: Sensitivity was highest in the Initial Algorithm, which had the poorest specificity. Although Youden J had excellent specificity, sensitivity was significantly lower than in the Modified Algorithm, which had both good sensitivity and specificity. Relaxing the domain A rules improved sensitivity of the Youden J Algorithm, but it remained less sensitive than the Modified Algorithm. Moreover, this was the only algorithm with variable sensitivity across age. All versions of the algorithm performed well across ability level. CONCLUSIONS: This study demonstrates that good levels of both sensitivity and specificity can be achieved for a diagnostic algorithm adhering to the DSM-5 criteria that is suitable across age and ability level.

Project description:Background:Children diagnosed with autism spectrum disorder (ASD) have social and cognitive disabilities. For parents, these behaviors can lead to humiliation, social exclusion, and isolation. Stigma is a problem that not only may affect the individual with high functioning autism, but has the potential to extend to their family as well. Indeed, research indicates that the parents of children with disabilities (including ASD) commonly experience stigmatizing reactions from others. Aim of work:To determine the prevalence of self and enacted stigma among parents of ASD children from Riyadh, Saudi Arabia, and recognize possible risk factors and causes of stigmatization. Material and methods:An observational cross-sectional study involving the parents of ASD children from Riyadh, Saudi Arabia. About 163 participants were included from the Centre for Autism Research (CFAR) at King Faisal Specialist Hospital & Research Centre (KFSH & RC) in Riyadh. The primary material used for data collection was a five-point scale questionnaire developed by the investigator. The questionnaire consisted closed ended questions related to the participants' demographic data, autistic child, family life, resources, and social experiences as a parent. The collected data were analyzed using descriptive statistics and appropriate statistical analysis, using Statistical package for the social sciences (SPSS), version 22. The level of significance was P value?<?.05. Results:The findings of this work indicated that 55 (33.7%) of the parents scored more than 3 in answering questions related to felt stigma; 82 (50.3%) were fathers. On the other hand, 108 (66.3%) did not feel stigmatized being a parent of autistic child. Forty-two (25.8%) of the parents scored more than 3 in answering questions related to enacted stigma, whereas 121 (74.2%) did not face enacted stigmatization being a parent of autistic child. There was a strong tendency for mothers (41, 75%) to feel more self- and enacted stigmatized than fathers (P?<?.05). Moreover, the gender of the autistic child, consanguinity, severity of the ASD, and the monthly income of the family showed no significant difference in the parents who scored more than 3 for felt- or enacted stigmatization (P?>?.05). Conclusion:Among participated parents of children with ASD in Riyadh, Saudi Arabia, 33.7% of them experienced stigmatization, and mothers felt more self- and enacted stigmatized when compared to fathers. Public awareness among people in Saudi Arabia have been increased and, thus, negative stigmatization has decreased among parents in the country. A high level of felt stigma suggests the need for psychological intervention for the family to help cope with this new situation. A higher level of enacted stigma suggests the need for their rights (individuals with ASD) and increased awareness in the society. It is recommended that further research is needed in different centers in Riyadh and other regions of Saudi Arabia to investigate the prevalence of stigma in parents of autistic children.

Dataset Information

Pathways to a diagnosis of autism spectrum disorder in Germany: a survey of parents.

Background

Methods

Results

Publications

Pathways to a diagnosis of autism spectrum disorder in Germany: a survey of parents.

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