Information needs for parents of children with autism spectrum disorder: a qualitative study

Alencar, Delmo de Carvalho; Sousa Neto, Antonio Rosa de; Ibiapina, Aline Raquel de Sousa; Oliveira, Joseph Dimas de

doi:10.1590/ce.v30i0.97345pt

person Delmo de Carvalho Alencar

Drafting the work or revising it critically for important intellectual content · approved the final version of the text · Agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved · Substantial contributions to the conception or design of the work; or the acquisition, analysis, or interpretation of data for the work

schoolUniversidade Regional do Cariri, Iguatu, CE, Brasil

0000-0002-6555-7921

person Antonio Rosa de Sousa Neto

Drafting the work or revising it critically for important intellectual content · approved the final version of the text · Agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved

schoolUniversidade Federal do Piauí, Teresina, PI, Brasil

0000-0002-0675-0916

person Aline Raquel de Sousa Ibiapina

Drafting the work or revising it critically for important intellectual content · approved the final version of the text

schoolUniversidade Federal do Piauí, Picos, PI, Brasil

0000-0003-1373-3564

person Joseph Dimas de Oliveira

Drafting the work or revising it critically for important intellectual content · approved the final version of the text · Agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved

schoolUniversidade Regional do Cariri, Crato, CE, Brasil

0000-0001-8105-4286

Associate editor: Dra. Claudia Nery Teixeira Palombo

Corresponding author: Delmo de Carvalho Alencar Universidade Regional do Cariri Avenida Dário Rabêlo, 977, Sete de Setembro, Iguatu-CE E-mail:
delmo-carvalho@hotmail.com

Themes	Total messages
Category 1: Assessment of the child with suspected autism.	691
Characteristics of the disorder	110
Behavior of the child with ASD	246
Signs of ASD	196
Diagnosis of children with ASD	139
Category 2: Interventions for children with autism.	681
Rights of children with ASD	365
Access to resources	171
Prospects	145

Themes	Sub-themes	Total messages
Themes	Sub-themes	Total messages
Characteristics of the disorder	What it is	15
	Frequency of cases	12
	Causes	31
	Possible cures	52
Behavior of children with ASD	Behaving in undesirable ways	16
	How to reduce inappropriate behavior	27
	Rewards for dealing with your child	20
	Using reinforcers	23
	Dealing with tantrums and frustrations	47
	Extinguishing challenging behavior	52
	How to teach new skills and behaviors	61
Signs of ASD	What the spectrum means in ASD	26
	Severity levels of ASD	35
	Changes in communication	37
	Sensory changes	42
	Changes in relationships/interactions	56
Diagnosing a child with ASD	How it's done	47
	Tests to be carried out early diagnosis	33
	Early diagnosis	59
Rights of children with ASD	Health plans	53
	Priority in care	62
	Considered a person with a disability	42
	Social programs and benefits	65
	Combating stigma	63
	Labor market and social security	38
	Educational, housing, and transportation rights	42
Access to resources	Therapies	44
	Teaching strategies/resources for obtaining information	54
	Available services	73
Prospects	Prognosis	19
	Risk of having another child with ASD	47
	Concern about who will look after the child in the absence of parents	37
	What the family can do to think about the child's future	42

Themes	Posts about information needs
Themes	Posts about information needs
Characteristics of the disorder	Why are cases of autism increasing so much these days? (Post 144) Is there a vaccine that could be associated with autism? (Post 11) Will our child ever be cured of autism? (Post 832)
Behavior of children with ASD	My son has level 1 autism, but contrary to what I usually read, he is not selective about eating. He overeats, asks for food at relatives' houses, eats his meal, then goes to his grandfather's plate, and even asks for fruit. Is this common, or could it be a compulsion? (Post 303) How do your children usually react during dental appointments? (Post 62) We've been trying to wean him off the toilet for eight months, taking him to the bathroom every 30 to 60 minutes, but he only goes in his clothes. Does anyone have any tips to help with this process? (Post 87)
Signs of ASD	When a child doesn't speak, does this indicate that they are at autism level 2? (Post 910) Is it common for a seven-year-old autistic child not to be able to read? (Post 601) What do you do to calm your child down during an autism crisis? (Post 59)
Diagnosing a child with ASD	Which doctor is responsible for assessing and reporting a diagnosis of autism? (Post 71) I have a one-year-old and a three-month-old baby, and I'm suspicious. How did you notice the first signs of autism in your child? (Post 205) Is there a specific test to diagnose autism, apart from behavioral observation? (Post 88)
Rights of children with ASD	Can people who receive the Continuous Cash Benefit work without losing the benefit? (Post 157) Does ICD F84.0 guarantee access to the Continuous Cash Benefit, as provided for in the Organic Law on Social Assistance? (Post 515) I put my son in school. Is he entitled to be accompanied by a professional? (Post 92) Are parents of autistic children entitled to reduced working hours? (Post 396)
Access to resources	Has anyone experienced side effects when using risperidone? (Post 122) How do I get the autism therapies offered by the Unified Health System? (Post 83) How do I get the sunflower cord for my son? (Post 1017)
Prospects	If you already have an autistic child, is there a greater chance of having another child with the same diagnosis? (Post 235) Who will look after our child if we are no longer here? (Post 69) What can we do today to ensure a better future for our autistic children? (Post 441)