Grandma knows best: Family structure and age of diagnosis of autism spectrum disorder

Autism ◽  
2017 ◽  
Vol 22 (3) ◽  
pp. 368-376 ◽  
Author(s):  
Nachum Sicherman ◽  
George Loewenstein ◽  
Teresa Tavassoli ◽  
Joseph D Buxbaum

This pilot study estimates the effects of family structure on age of diagnosis, with the goal of identifying factors that may accelerate or delay diagnosis. We conducted an online survey with 477 parents of children with autism. In addition, we carried out novel, follow-up surveys of 196 “friends and family,” who were referred by parents. Family structure and frequency of interactions with family members have significant effects on age of diagnosis (p < 0.05). In all, 25% of parents report that other individuals indicated that their child might have a serious condition before they themselves suspected it. Moreover, around 50% of friends and family report that they suspected that the child had a serious condition before they were aware that either parent was concerned, suggesting that the clues were there to see, especially for experienced viewers. While half of those individuals shared their concerns with the parents, the other half either did not raise any concern (23%) or just “hinted” at their concern (27%). Among children with siblings, children with an older sibling are diagnosed approximately 10 months earlier (p < 0.01) than those without, and children with no siblings were diagnosed 6–8 months earlier than children with siblings (p < 0.01). Interestingly, frequent interactions with grandparents, especially grandmothers, significantly lowered the age of diagnosis by as much as 5 months (p < 0.05). While this pilot study requires replication, the results identify potential causes for accelerated or delayed diagnosis, which if better understood, could ultimately improve age of diagnosis and treatment, and hence outcomes.

Author(s):  
Laurie McLay ◽  
Martina C. M. Schäfer ◽  
Larah van der Meer ◽  
Llyween Couper ◽  
Emma McKenzie ◽  
...  

2021 ◽  
Author(s):  
Munirul M. Haque ◽  
Masud Rabbani ◽  
Dipranjan Das Dipal ◽  
Md Ishrak Islam Zarif ◽  
Anik Iqbal ◽  
...  

BACKGROUND Care for children with autism spectrum disorder (ASD) can be challenging for families and medical care systems. This is especially true in Low-and-Middle-Income-countries (LMIC) like Bangladesh. To improve family-practitioner communication and developmental monitoring of children with ASD, [spell out] (mCARE) was developed. Within this study, mCARE was used to track child milestone achievement and family socio-demographic assets to inform mCARE feasibility/scalability and family-asset informed practitioner recommendations. OBJECTIVE The objectives of this paper are three-fold. First, document how mCARE can be used to monitor child milestone achievement. Second, demonstrate how advanced machine learning models can inform our understanding of milestone achievement in children with ASD. Third, describe family/child socio-demographic factors that are associated with earlier milestone achievement in children with ASD (across five machine learning models). METHODS Using mCARE collected data, this study assessed milestone achievement in 300 children with ASD from Bangladesh. In this study, we used four supervised machine learning (ML) algorithms (Decision Tree, Logistic Regression, k-Nearest Neighbors, Artificial Neural Network) and one unsupervised machine learning (K-means Clustering) to build models of milestone achievement based on family/child socio-demographic details. For analyses, the sample was randomly divided in half to train the ML models and then their accuracy was estimated based on the other half of the sample. Each model was specified for the following milestones: Brushes teeth, Asks to use the toilet, Urinates in the toilet or potty, and Buttons large buttons. RESULTS This study aimed to find a suitable machine learning algorithm for milestone prediction/achievement for children with ASD using family/child socio-demographic characteristics. For, Brushes teeth, the three supervised machine learning models met or exceeded an accuracy of 95% with Logistic Regression, KNN, and ANN as the most robust socio-demographic predictors. For Asks to use toilet, 84.00% accuracy was achieved with the KNN and ANN models. For these models, the family socio-demographic predictors of “family expenditure” and “parents’ age” accounted for most of the model variability. The last two parameters, Urinates in toilet or potty and Buttons large buttons had an accuracy of 91.00% and 76.00%, respectively, in ANN. Overall, the ANN had a higher accuracy (Above ~80% on average) among the other algorithms for all the parameters. Across the models and milestones, “family expenditure”, “family size/ type”, “living places” and “parent’s age and occupation” were the most influential family/child socio-demographic factors. CONCLUSIONS mCARE was successfully deployed in an LMIC (i.e., Bangladesh), allowing parents and care-practitioners a mechanism to share detailed information on child milestones achievement. Using advanced modeling techniques this study demonstrates how family/child socio-demographic elements can inform child milestone achievement. Specifically, families with fewer socio-demographic resources reported later milestone attainment. Developmental science theories highlight how family/systems can directly influence child development and this study provides a clear link between family resources and child developmental progress. Clinical implications for this work could include supporting the larger family system to improve child milestone achievement. CLINICALTRIAL We took the IRB from Marquette University Institutional Review Board on July 9, 2020, with the protocol number HR-1803022959, and titled “MOBILE-BASED CARE FOR CHILDREN WITH AUTISM SPECTRUM DISORDER USING REMOTE EXPERIENCE SAMPLING METHOD (MCARE)” for recruiting a total of 316 subjects, of which we recruited 300. (Details description of participants in Methods section)


Autism ◽  
2020 ◽  
Vol 24 (8) ◽  
pp. 2117-2128 ◽  
Author(s):  
Manon WP De Korte ◽  
Iris van den Berk-Smeekens ◽  
Martine van Dongen-Boomsma ◽  
Iris J Oosterling ◽  
Jenny C Den Boer ◽  
...  

The aim of this study was to investigate the effect of Pivotal Response Treatment versus robot-assisted Pivotal Response Treatment on self-initiations of children with autism spectrum disorder and to explore the relation between self-initiations and collateral gains in general social-communicative skills. Forty-four participants with autism spectrum disorder aged 3–8 years (Pivotal Response Treatment: n = 20, Pivotal Response Treatment + robot: n = 24), who were recruited as part of a larger randomized controlled trial (number NL4487/NTR4712, https://www.trialregister.nl/trial/4487 ), were included. Self-initiations were blindly coded, assessing video probes of all parent–child sessions using an event-recording system. General social-communicative skills were assessed with the parent- and teacher-rated Social Responsiveness Scale during intervention and at 3-month follow-up. Results using linear mixed-effects models showed overall gains in self-initiations during both Pivotal Response Treatment intervention groups (estimate = 0.43(0.15), 95% confidence interval (CI): 0.13–0.73), with larger gains in functional self-initiations in children receiving robot-assisted Pivotal Response Treatment (estimate = −0.27(0.12), 95% confidence interval: −0.50 to −0.04). Growth in self-initiations was related to higher parent-rated social awareness at follow-up compared with baseline in the total sample ( r = −0.44, p = 0.011). The clinical implications of these findings, as well as directions for future research in the utility of Pivotal Response Treatment and robot assistance in autism spectrum disorder intervention, are discussed. Lay abstract The initiation of social interaction is often defined as a core deficit of autism spectrum disorder. Optimizing these self-initiations is therefore a key component of Pivotal Response Treatment, an established intervention for children with autism spectrum disorder. However, little is known about the development of self-initiations during intervention and whether this development can be facilitated by robot assistance within Pivotal Response Treatment. The aim of this study was to (1) investigate the effect of Pivotal Response Treatment and robot-assisted Pivotal Response Treatment on self-initiations (functional and social) of young children with autism spectrum disorder over the course of intervention and (2) explore the relation between development in self-initiations and additional gains in general social-communicative skills. Forty-four children with autism spectrum disorder (aged 3–8 years) were included in this study. Self-initiations were assessed during parent–child interaction videos of therapy sessions and coded by raters who did not know which treatment (Pivotal Response Treatment or robot-assisted Pivotal Response Treatment) the child received. General social-communicative skills were assessed before start of the treatment, after 10 and 20 weeks of intervention and 3 months after the treatment was finalized. Results showed that self-initiations increased in both treatment groups, with the largest improvements in functional self-initiations in the group that received robot-assisted Pivotal Response Treatment. Increased self-initiations were related to higher parent-rated social awareness 3 months after finalizing the treatment.


2020 ◽  
Vol 61 (6) ◽  
pp. 835-845
Author(s):  
Anneli Kylliäinen ◽  
Satu Häkkinen ◽  
Sanelma Eränen ◽  
Kati Rantanen ◽  
Hanna Ebeling ◽  
...  

2020 ◽  
Vol 35 (4) ◽  
pp. 246-256
Author(s):  
Elizabeth Crais ◽  
Cara S. McComish ◽  
Emily F. Kertcher ◽  
Steve Hooper ◽  
Rebecca Pretzel ◽  
...  

This study explored caregivers’ perspectives on facilitators and barriers to screening, diagnosis, and identifying and accessing other services for young children with autism spectrum disorder (ASD); and caregivers’ suggestions for improving the process. Eight focus groups with 55 caregivers were conducted. Four groups had a mix of White, African American, and Asian caregivers, and to gain broader populations, we recruited two groups of Spanish-speaking and two groups of American Indian caregivers. Some caregivers reported that their child and they received excellent services; however, the majority reported concerns about the services they and their child received. The findings also indicated a lower age of diagnosis and a smaller gap between concerns and diagnosis for White non-Hispanic children compared with Hispanic non-White children. Caregivers had many suggestions for ways to improve the process.


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