Maternité : Perspectives et expériences féminines d'être parent avec un diagnostic de TSA

Aperçu: G.M.

On sait peu de choses sur les pressions émotionnelles et la gestion pratique des défis quotidiens et des exigences intra et interpersonnelles d'élever un enfant en tant que parent avec un diagnostic de "trouble du spectre de l'autisme". 

La présente étude a utilisé une approche qualitative pour comprendre les perceptions des femmes diagnostiquées autistes d' « être un parent ». 

Huit entretiens semi-structurés ont été analysés à l'aide de l'analyse phénoménologique interprétative.

Les avantages et les défis d'être parent ont été mis en évidence aux côtés des compétences et des caractéristiques spécifiques à la population associées à la force et à la résilience, à l'amour, à l'éducation, à la routine et aux considérations sensorielles. 

Les résultats identifient le besoin d'un soutien parental spécialisé spécifique à la population, fournissent une orientation aux professionnels en milieu clinique et élargissent la rareté de la recherche dans ce domaine.

. 2021 Jun 9.   doi: 10.1007/s10803-021-05122-5. 

Motherhood: Female Perspectives and Experiences of Being a Parent with ASC

Rebecca Winnard  ^{1   2} , Mark Roy  ^{1   2} , Hannah Butler-Coyne  ^{3   4}

Affiliations

• PMID: 34106393
• DOI: 10.1007/s10803-021-05122-5

Abstract

Little is known about the emotional pressures and practical management of daily challenges and, intra and interpersonal demands of raising a child as a parent with a diagnosis of Autistic Spectrum Conditions. The present study utilised a qualitative approach to understand perceptions of females diagnosed on the autistic spectrum of 'being a parent'. Eight semi-structured interviews were analysed using Interpretative Phenomenological Analysis. Benefits and challenges of being a parent were highlighted alongside population-specific skill and characteristics associated with strength and resilience, love, nurture, routine and sensory considerations. Findings identify the need for population-specific specialist parenting support, provide direction for professionals in clinical settings and expand the paucity of research in this area.

Keywords: Autistic spectrum conditions; Interpretative phenomenological analysis; Parenting.

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Résultats d'une enquête auprès des consommateurs sur l'efficacité d'un mélange nutritionnel rapporté sur les symptômes des "troubles du spectre de l'autisme", l'apraxie et d'autres conditions impliquant des retards moteurs et de la parole

Aperçu: G.M.

Commentaires : Exemple d'étude canada dry (commandée par la société qui produit le complément ?)  

Contexte :
Les causes et les remèdes des "troubles du spectre de l'autisme" (TSA), de l'apraxie et d'autres affections impliquant des retards moteurs et de la parole restent spéculatifs. Pour compenser les symptômes, de nombreuses personnes essaieront des approches intégratives, notamment en modifiant leur alimentation et en ajoutant des suppléments de vitamines, de minéraux et d'huile de poisson.

Objectif principal de l'étude :
Le but de cette étude était de recueillir des opinions sur l'efficacité de mélanges alimentaires et de nutriments spécifiques sur les troubles de la parole et de la motricité au sein d'un échantillon de population d'adultes et d'enfants (N = 77) qui déclarent avoir des retards de communication et/ou symptômes de dysfonctionnement moteur, et qui font partie d'une population prenant actuellement une composition nutritionnelle IQed (N = 632). 

Méthodes/conception :
Un instrument d'enquête en 28 points a été conçu dans des domaines clés liés aux symptômes de la parole et des capacités motrices. Des sous-questions supplémentaires ont été incluses pour le résumé descriptif et l'interprétation statistique de la description des données. L'enquête en ligne a été menée auprès d'un échantillon de population d'adultes et d'enfants (N = 77) qui ont déclaré avoir des retards de communication et des symptômes de la fonction motrice, et qui font partie d'une population prenant actuellement un composition nutritionnelle, l'IQed (N = 632) , un aliment vitaminique complet et produit de remplacement de repas 

Contexte :
L'enquête a été menée via Internet à l'aide de SurveyMonkey (San Mateo, Californie, États-Unis). 

Participants :
Les consommateurs (ou leur soignant) ont répondu à un sondage en ligne et ont répondu à des questions sur l'utilisation de suppléments nutritionnels et leur opinion sur l'efficacité du produit sur les symptômes. Au total, 88 personnes ont répondu à l'enquête et 11 ont été exclues pour non-achèvement de l'enquête. Les participants inclus comprennent 55 hommes et 22 femmes (N = 77) avec un âge médian de 10,5 ans et une tranche d'âge de 2 à 70 ans. La situation géographique des participants représente 85,7% des États-Unis et 9 autres pays (14,3%). 

Mesures de résultats primaires :
L'efficacité a été mesurée sur la base des évaluations des participants à l'aide d'une échelle d'évaluation numérique pour signaler les changements dans les symptômes pendant une période définie d'utilisation du supplément. 

Résultats :
Quatre-vingt-douze pour cent des répondants à l'enquête ont signalé des changements comportementaux ou physiques positifs lorsque la formule IQed a été ajoutée au régime alimentaire, la plupart (64 %) signalant des changements positifs au cours des 2 premières semaines. Les difficultés d'élocution et de communication étaient le domaine de difficulté le plus élevé signalé pour cette population, touchant 83,8 % des répondants. Après la supplémentation, la parole expressive s'est améliorée pour 85,7% des participants, le facteur d'augmentation des vocalisations (sons, mots) montrant l'amélioration observée la plus élevée (88,1%) parmi tous les facteurs de parole/communication combinés. Dans toutes les autres catégories, plus de 67 % des personnes interrogées ont signalé des améliorations dans tous les facteurs : discours (77,6 %), motricité orale (63,2 %), capacité de réception (69,6 %), concentration (65,1 %), planification motrice (77,6 %), l'humeur (62,3 %), les aptitudes sociales (59,3 %) et la santé physique/comportementale (47,3 %), avec des effets indésirables signalés dans moins de 1 %. 

Conclusion :
Les consommateurs ont signalé une amélioration des symptômes grâce à l'utilisation d'un mélange de vitamines et de minéraux (composition IQed Smart Nutrition). L'implication de cette étude est de poursuivre les recherches sur les modalités alternatives de traitement des TSA et des affections de type TSA en utilisant des produits alimentaires naturels, des suppléments de vitamines et de minéraux et des ingrédients ayurvédiques et botaniques. 

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. 2021 Mar;27(2):11-20.

Results of a Consumer Survey on the Effectiveness of a Nutritional Blend Reported on Autism Spectrum Disorder Symptoms, Apraxia, and Other Conditions Involving Motor and Speech Delays

Lisa Geng, Francine Hamel, Doreen Lewis

• PMID: 32088673

Abstract

Background: The causes and cures for Autism Spectrum Disorders (ASDs), apraxia, and other conditions involving motor and speech delays remain speculative. To offset symptoms, many individuals will try integrative approaches, including making dietary changes and adding vitamins, minerals, and fish oil supplements.

Primary study objective: The purpose of this study was to glean opinions about the effectiveness of specific food blends and nutrients on speech and motor impairments within a sample population of adults and children (N = 77) who self-report having communication delays and/or motor dysfunction symptoms, and who are among a population currently taking IQed (N = 632) nutritional composition.

Methods/design: A 28-point survey instrument was designed across key areas relating to symptoms of speech and motor abilities. Additional subquestions were included for descriptive summary and description statistical interpretation of the data. The Web-based survey was conducted on a sample population of adults and children (N = 77) who self-reported having communication delays and motor function symptoms, and who are among a population currently taking IQed (N = 632) nutritional composition, a whole food complete vitamin and meal replacement product.

Setting: The survey was conducted via the Internet using SurveyMonkey (San Mateo, CA, USA).

Participants: Consumers (or their caregiver) completed an online survey and answered questions about nutritional supplementation use and their opinion about product effectiveness on symptoms. A total of 88 individuals responded to the survey and 11 were excluded for incompletion of the survey. Included participants comprise 55 males and 22 females (N = 77) with a median age of 10.5 y and an age range from 2 to 70 y. Participants' geographic location represent as 85.7% from the United States and 9 other countries (14.3%).

Primary outcome measures: Effectiveness was measured based on participant ratings using a numeric rating scale to report on changes in symptoms for a defined period of use of the supplement.

Results: Ninety-two percent of the survey respondents reported positive behavioral or physical changes when IQed formula was added to the diet, with most (64%) reporting positive changes within the first 2 wk. Difficulty with speech and communication was the highest reported area of difficulty for this population, afflicting 83.8% of respondents. After supplementation, expressive speech improved for 85.7% of the participants with the increased vocalizations (sounds, words) factor showing the highest observed improvement (88.1%) among all speech/communication factors combined. In all other categories, more than 67% of the survey takers reported improvements in all factors: speech (77.6%), oral motor skills (63.2%), receptive ability (69.6%), focus (65.1%), motor planning (77.6%), mood (62.3%), social skills (59.3%), and physical/behavioral health (47.3%), with any adverse effects reported in less than 1%.

Conclusion: Consumers reported improvements in symptoms by use of a blended vitamin and mineral product (IQed Smart Nutrition composition). The implication for this study is to further research on alternative modalities of treatments for ASD and ASD-type conditions using natural food products, vitamin and mineral supplements, and Ayurvedic and botanical ingredients.

Utilisation de médicaments dans la gestion des comorbidités chez les personnes avec un diagnostic de "trouble du spectre de l'autisme" à partir d'une grande base de données d'assurance nationale

Aperçu: G.M.

Importance :
Bien qu'il n'existe aucun traitement pharmacologique pour les "troubles du spectre de l'autisme" (TSA) eux-mêmes, des thérapies comportementales et pharmacologiques ont été utilisées pour traiter ses symptômes et ses comorbidités courantes. Une meilleure compréhension des médicaments utilisés pour gérer les comorbidités dans cette population croissante est essentielle; cependant, la plupart des efforts antérieurs ont été limités en taille, en durée et en l'absence d'une large représentation. 

Objectif :
Utiliser une base de données représentative à l'échelle nationale pour découvrir les tendances de la prévalence des affections concomitantes et de l'utilisation de médicaments dans la gestion des symptômes et des comorbidités au fil du temps chez les personnes américaines avec un diagnositc de TSA. 

Conception, cadre et participants :
Cette étude de cohorte rétrospective basée sur la population a exploité une base de données de réclamations de régime de santé gérée à l'échelle nationale contenant plus de 86 millions de membres uniques. Les données du 1er janvier 2014 au 31 décembre 2019 ont été utilisées pour analyser la fréquence des prescriptions et les diagnostics de comorbidités. Un total de 26 722 personnes avec un diagnostic de TSA à qui on avait prescrit au moins 1 des 24 médicaments les plus couramment prescrits pour traiter les symptômes ou les comorbidités des TSA au cours de la période d'étude de 6 ans ont été inclus dans l'analyse. 

Expositions :
Codes de diagnostic des TSA basés sur la Classification internationale des maladies, Neuvième révision, et la Classification statistique internationale des maladies et problèmes de santé connexes, Dixième révision. 

Principaux résultats et mesures :
Estimations quantitatives de la fréquence de prescription des 24 médicaments les plus couramment prescrits dans la cohorte de l'étude et des comorbidités les plus courantes associées à chaque médicament dans cette population. 

Résultats :
Parmi les 26 722 personnes avec un diagnostic de TSA incluses dans l'analyse (77,7 % d'hommes ; âge moyen [ET] : 14,45 [9,40] ans), la polypharmacie était courante, allant de 28,6 % à 31,5 %. Les schémas de prescription des individus changeaient fréquemment au sein des classes de médicaments, plutôt qu'entre les classes. La fréquence de prescription d'un médicament spécifique variait considérablement, selon le diagnostic coexistant d'une comorbidité donnée. Sur les 24 médicaments évalués, 15 étaient associés à une prévalence d'au moins 15 % d'un trouble de l'humeur et 11 étaient associés à une prévalence d'au moins 15 % de trouble déficitaire de l'attention/hyperactivité. Chez les patients prenant des antipsychotiques, les 2 comorbidités les plus fréquentes étaient de type combiné trouble déficitaire de l'attention/hyperactivité (11,6 %-17,8 %) et trouble anxieux (13,1 %-30,1 %). 

Conclusions et pertinence :
Cette étude a démontré une variabilité et un caractère transitoire considérables dans l'utilisation de médicaments sur ordonnance par les cliniciens américains pour gérer les symptômes et les comorbidités associés aux TSA. Ces résultats confirment l'importance d'une surveillance précoce et continue des patients avec un diagnostic de TSA et d'affections concomitantes et offrent aux cliniciens un aperçu des thérapies ciblées les plus couramment utilisées pour gérer les affections concomitantes. Les futurs efforts de recherche et de politique sont essentiels pour évaluer dans quelle mesure la gestion pharmacologique des comorbidités affecte la qualité de vie et le fonctionnement des patients avec un diagnostic de TSA tout en continuant à optimiser les directives cliniques, afin d'assurer des soins efficaces pour cette population croissante.

. 2021 Jun 7.  doi: 10.1001/jamapediatrics.2021.1329. 

Medication Use in the Management of Comorbidities Among Individuals With Autism Spectrum Disorder From a Large Nationwide Insurance Database

Aliya G Feroe  ¹ , Nishant Uppal  ¹ , Alba Gutiérrez-Sacristán  ² , Sajad Mousavi  ² , Philip Greenspun  ² , Rajeev Surati  ² , Isaac S Kohane  ^{2   3} , Paul Avillach  ^{2   3}

Affiliations

• PMID: 34097007
• DOI: 10.1001/jamapediatrics.2021.1329

Abstract

Importance: Although there is no pharmacological treatment for autism spectrum disorder (ASD) itself, behavioral and pharmacological therapies have been used to address its symptoms and common comorbidities. A better understanding of the medications used to manage comorbid conditions in this growing population is critical; however, most previous efforts have been limited in size, duration, and lack of broad representation.

Objective: To use a nationally representative database to uncover trends in the prevalence of co-occurring conditions and medication use in the management of symptoms and comorbidities over time among US individuals with ASD.

Design, setting, and participants: This retrospective, population-based cohort study mined a nationwide, managed health plan claims database containing more than 86 million unique members. Data from January 1, 2014, to December 31, 2019, were used to analyze prescription frequency and diagnoses of comorbidities. A total of 26 722 individuals with ASD who had been prescribed at least 1 of 24 medications most commonly prescribed to treat ASD symptoms or comorbidities during the 6-year study period were included in the analysis.

Exposures: Diagnosis codes for ASD based on International Classification of Diseases, Ninth Revision, and International Statistical Classification of Diseases and Related Health Problems, Tenth Revision.

Main outcomes and measures: Quantitative estimates of prescription frequency for the 24 most commonly prescribed medications among the study cohort and the most common comorbidities associated with each medication in this population.

Results: Among the 26 722 individuals with ASD included in the analysis (77.7% male; mean [SD] age, 14.45 [9.40] years), polypharmacy was common, ranging from 28.6% to 31.5%. Individuals' prescription regimens changed frequently within medication classes, rather than between classes. The prescription frequency of a specific medication varied considerably, depending on the coexisting diagnosis of a given comorbidity. Of the 24 medications assessed, 15 were associated with at least a 15% prevalence of a mood disorder, and 11 were associated with at least a 15% prevalence of attention-deficit/hyperactivity disorder. For patients taking antipsychotics, the 2 most common comorbidities were combined type attention-deficit/hyperactivity disorder (11.6%-17.8%) and anxiety disorder (13.1%-30.1%).

Conclusions and relevance: This study demonstrated considerable variability and transiency in the use of prescription medications by US clinicians to manage symptoms and comorbidities associated with ASD. These findings support the importance of early and ongoing surveillance of patients with ASD and co-occurring conditions and offer clinicians insight on the targeted therapies most commonly used to manage co-occurring conditions. Future research and policy efforts are critical to assess the extent to which pharmacological management of comorbidities affects quality of life and functioning in patients with ASD while continuing to optimize clinical guidelines, to ensure effective care for this growing population.

Toujours laissés pour compte : les jeunes noirs d'âge scolaire reçoivent moins souvent un diagnostic de TSA par rapport aux jeunes blancs

Aperçu: G.M.

Des recherches antérieures suggèrent que les enfants noirs sont à risque de retards dans le diagnostic de l'autisme, mais les facteurs qui influencent le moment du diagnostic entre les groupes ethniques restent flous. 

Cette étude a analysé les données d'enfants noirs et blancs qui ont reçu un premier diagnostic d'autisme dans une clinique spécialisée. Les jeunes noirs étaient sous-représentés dans le groupe qui a reçu un premier diagnostic au milieu/à la fin de l'enfance (c'est-à-dire après l'âge de six ans). Recevoir un diagnostic plus tard dans l'enfance était lié à un QI plus élevé (niveau de tendance) et à plus de problèmes d'intériorisation pour les enfants blancs alors qu'il était lié à un QI plus faible (niveau de tendance) et à une intensité plus élevée des symptômes de TSA pour les enfants noirs. 

Les résultats suggèrent que les disparités ethniques dans l'identification précoce de l'autisme peuvent diminuer mais persistent chez les personnes diagnostiquées plus tard dans l'enfance.

. 2021 Jun 4.  doi: 10.1007/s10803-021-05118-1. 

Still Left Behind: Fewer Black School-Aged Youth Receive ASD Diagnoses Compared to White Youth

Serene Habayeb  ^{1   2} , Lauren Kenworthy  ³ , Andrea De La Torre  ^{3   4} , Allison Ratto  ³

Affiliations

• PMID: 34089141
• DOI: 10.1007/s10803-021-05118-1

Abstract

Prior research suggests that Black children are at risk for delays in diagnosis of autism, but factors that influence diagnostic timing across races remain unclear. This study analyzed data from Black and White children who received a first-time autism diagnosis at a specialty clinic. Black youth were under-represented in the group who received a first diagnosis in middle/late childhood (i.e., after age six). Receiving a diagnosis later in childhood was related to higher IQ (trend level) and more internalizing problems for White children whereas it was related to lower IQ (trend level) and higher ASD symptom intensity for Black children. Findings suggest racial disparities in early identification of autism may be diminishing but persist among those diagnosed later in childhood..

Keywords: Autism Spectrum Disorder; Diagnosis Delay; First Diagnosis; Race.

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