L'impact des politiques des Etats sur le diagnostic précoce de l'autisme : une enquête qualitative

Titre original en anglais : The impact of state policy on early autism diagnosis: A qualitative investigation

Cette publication est incluse dans le projet « Contributions académiques de personnes autistes sur l’autisme ». La publication mentionne un auteur·ice autiste, sans divulguer son identité.

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Lindly, O. J., Abate, D., Fuchu, P. L., Kuhn, J. L., Mudnal Bharath, P. S., Asantewaa, S. M., Feinberg, E., & Broder-Fingert, S. (2025). The impact of state policy on early autism diagnosis: A qualitative investigation. Autism, 29(8), 2163-2180. https://doi.org/10.1177/13623613251336813

Date de publication: 22/05/2025 Ajout dans AutiHub: 18/10/2026 Type: Article Langue de l’article: Anglais
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Auteurs

Auteur·ices des publications
8
Auteur·ices autistes mentionné·es dans la publication
1
  1. Olivia J Lindly
  2. Danielle Abate
  3. Plyce L Fuchu
  4. Jocelyn L Kuhn
  1. Purnima S Mudnal Bharath
  2. Sarah M Asantewaa
  3. Emily Feinberg
  4. Sarabeth Broder-Fingert

Résumé

Le diagnostic de l'autisme avant l'age de trois ans afin d'accelerer l'acces a des services essentiels est une priorite de sante publique aux Etats-Unis. Pourtant, l'age moyen du diagnostic de l'autisme est de 49 mois, avec une variabilite importante entre les Etats. En examinant les politiques, definies comme les lois, reglementations, procedures, mesures administratives, incitations ou pratiques volontaires des gouvernements ou d'autres institutions, il pourrait etre possible d'identifier des determinants structurels modifiables du diagnostic precoce (ou tardif) de l'autisme. Nous avons donc cherche a identifier les politiques ayant un impact sur le diagnostic precoce de l'autisme dans cinq Etats qui font partie d'une initiative plus large visant a ameliorer le diagnostic de l'autisme (Arizona, Californie, Connecticut, Massachusetts et Pennsylvanie), ainsi que celles qui existent a l'echelle nationale. De 2021 a 2023, nous avons mene des entretiens semi-structures avec un echantillon raisonne de 57 experts des politiques ou de la recherche sur l'autisme. Les quatre themes suivants ont ete identifies au moyen d'une analyse conventionnelle du contenu : (1) le suivi du developpement est essentiel ; toutefois, les politiques de depistage du developpement varient au sein des Etats et entre eux ; (2) une multitude de facteurs politiques et contextuels faconnent les parcours menant au diagnostic precoce au sein des Etats ; (3) l'intervention precoce de l'Etat et les programmes communautaires de la petite enfance influencent le diagnostic precoce de l'autisme ; et (4) les disparites persistantes dans les parcours de diagnostic precoce de l'autisme sont affectees par les politiques. Les resultats de l'etude soulignent l'importance de faire progresser certaines politiques des Etats et federales afin d'augmenter le diagnostic precoce de l'autisme. Resume destine au grand public Aux Etats-Unis, lorsque les enfants autistes sont diagnostiques avant l'age de trois ans, cela peut les aider a obtenir les services dont ils ont besoin pour s'epanouir. Il existe de nombreuses differences entre les Etats quant au nombre d'enfants recevant un diagnostic d'autisme et a l'age moyen auquel ils sont diagnostiques. Certains travaux suggerent que ces differences pourraient etre dues aux politiques des Etats, qui comprennent les lois et les processus suivis par les gouvernements et les organisations. Peu de recherches ont cherche a comprendre les similitudes et les differences entre les politiques des Etats liees au diagnostic de l'autisme. C'est pourquoi notre etude a examine comment les politiques des Etats influencent le moment du diagnostic de l'autisme aux Etats-Unis. Nous avons interroge 57 experts dans cinq Etats et a l'echelle nationale de 2021 a 2023. Quatre themes cles ont ete identifies, notamment : (1) le suivi du developpement conduit souvent au depistage, mais les variations sont importantes au sein des Etats et entre eux ; (2) les facteurs familiaux, communautaires et de soins de sante faconnent les parcours vers le diagnostic de l'autisme dans les Etats ; (3) les programmes d'intervention precoce et d'education jouent un role dans le diagnostic de l'autisme ; et (4) des differences systematiques d'acces aux services de diagnostic persistent pour certains groupes d'enfants et de familles, tels que ceux ayant des capacites limitees d'expression en anglais. Les resultats de cette etude indiquent certaines modifications ou ameliorations des politiques des Etats et federales visant a reduire l'age du diagnostic de l'autisme et a attenuer les disparites persistantes dans le diagnostic de l'autisme.

Autism diagnosis before age three to expedite access to critical services is a public health priority in the United States. Still, the average age of autism diagnosis is 49 months with substantial variability across states. By examining policy—defined as laws, regulations, procedures, administrative actions, incentives, or voluntary practices of governments or other institutions—modifiable structural drivers of early (or late) autism diagnosis may be identified. We, therefore, sought to identify policies impacting early autism diagnosis in five states that are part of a larger initiative to improve autism diagnosis (Arizona, California, Connecticut, Massachusetts, and Pennsylvania) and those that exist nationally. We conducted semi-structured interviews from 2021 to 2023 with a purposive sample of 57 autism policy or research experts. The following four themes were identified through conventional content analysis: (1) developmental monitoring is critical; however, developmental screening policies vary within and across states; (2) myriad policy and contextual factors shape early diagnosis pathways within states; (3) early intervention by the state and community-based early childhood programs influence early autism diagnosis; and (4) persistent disparities in early autism diagnosis pathways are affected by policies. Study findings highlight the importance of advancing certain state and federal policies to increase early autism diagnosis. Lay abstract In the United States, when children on the spectrum are diagnosed before age three, it can help them get the services they need to thrive. There are many differences between states as far as how many children are diagnosed with autism and the average age when they are diagnosed. Some work suggests these differences may be due to state polices, which include the laws and processes governments and organizations follow. Little research has tried to understand the similarities and differences between state policies related to autism diagnosis. Because of this, our study looked at how state policies impact the timing of autism diagnosis in the United States. We interviewed 57 experts in five states and nationally from 2021 to 2023. Four key themes were identified including (1) developmental monitoring often leads to screening, but there is much variation in and across states; (2) family, community, and healthcare factors shape pathways to autism diagnosis in states; (3) early intervention and education programs play a role in autism diagnosis; and (4) systematic differences in access to diagnosis services persist for certain groups of children and families such as those with limited English-speaking abilities. This study’s findings point to certain state and federal policy changes or enhancements to reduce the age of autism diagnosis and ameliorate persistent disparities in autism diagnosis.

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Vue d’ensemble de la bibliographie citée

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Références citées
70
Avec un DOI
59
Sans DOI, à partir du texte brut de la bibliographie
10
0 / 70 (0,0 %) références citées comprennent au moins une personne identifiée comme autiste.
Références avec données à compléter
5 / 70 (7,1 %)
Références avec noms d’auteurices détectés
65 / 70 (92,9 %)
Sans nom d’auteurice détecté
5
Sans titre structuré
5
Sans identifiant stable
10
Références avec noms bruts d’auteurices restant à vérifier
5
Références avec problème de récupération des métadonnées externes
0
Ces indicateurs portent sur les références citées affichées sur cette page, après fusion des doublons techniques. Une référence sans DOI peut quand même soutenir les statistiques d’auteurices lorsqu’un titre et des noms d’auteurices sont disponibles.
Noms d’auteurices détectés dans la bibliographie citée
401
À partir du DOI ou de métadonnées externes
401
À partir du texte brut validé de la bibliographie
0
Noms bruts déjà validés
0
Noms bruts restant à vérifier
5
80 / 401 (20,0 %) noms sont associés à un·e auteurice déjà présent·e dans AutiHub. 321 / 401 (80,0 %) noms ne sont pas encore associés.
Noms associés à une personne identifiée comme autiste
0 / 401 (0,0 %)
Calculé sur l’ensemble des noms d’auteurices détectés dans la bibliographie citée. Parmi les noms associés à un·e auteurice déjà présent·e dans AutiHub : 0 / 80 (0,0 %). Personnes distinctes identifiées comme autistes : 0 / 336 (0,0 %).
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