Challenges Facing Families with a Child with ASD

Background:  

Priorities for autism research should focus in those areas that make a difference to people’s day-to-day lives.

Objectives:  

The goal of the current survey was to understand and quantify the greatest challenges facing children with ASD and their families with a view to developing relevant research priorities.

Methods:  

An anonymous survey that ran 08/01/2014-08/11/2014 targeted parents of a child of any age with ASD. Parents were asked the following open-ended questions:

(i)                 If your child could get help for one autism-related challenge, what would it be?

(ii)               If your family could get help for one autism-related challenge, what would it be?

The survey was designed and administered by the Interactive Autism Network (IAN), a large, US-based internet-mediated autism-research registry. Links to the survey were distributed by e-mail to registry participants and informational website subscribers. Links were also posted on the registry’s informational website and Facebook page.

Results:  

There were 888 and 773 responses from parents of a child with ASD to the questions about challenges facing their child and family, respectively. Distribution of child ages for parent responses to both questions: 46% children aged<13 years; 29% teens aged 13-17 years; 25% adult children aged ≥18 years. Responses were coded and categorized into themes and sub-themes. Some responses spanned more than one theme or sub-theme and were coded in multiple categories and, thus, coded responses total more than 100%.

The greatest autism-related challenge that parents said that their children faced were general living skills (58%), most notably communication (19%) and social engagement (15%). The next most challenging category related to behavior (31%), most notably anger, aggressive behaviors, and self-injurious behaviors (19%). The other major challenge related to dealing with psychological comorbidities (14%), especially anxiety.

The greatest autism-related challenges that parents said that their families faced were their child’s behavioral issues (20%), especially anger, aggressive behaviors, and self-injurious behaviors (15%). Families were concerned about transition issues and how their child would live independently (19%). Families were also challenged by financial issues (16%) and obtaining the services and help that they needed (18%), including respite care and emotional support, which are challenges that are also reflected in the general stress that families were reporting (18%). Family also reported challenges relating to their child’s general living skills (19%).

Conclusions:  

Children with ASD and their families face numerous autism-challenges in daily life. Both research and community resource priorities should focus on alleviation of these challenges.