Living with a Child with a Disability

Written by Cynthia A. Smith, MS, CAS, JD

On December 16, 2008, I attended a press conference announcing the release of the findings from a research project titled Living with Autism. Although the study focused on children with autism spectrum disorders, I could not help but think a study on families of children with AD/HD or any disability that significantly impacts daily living activities might share some of the same findings.

I thought back to all the children with disabilities I worked with in high school and college, and to my own family experiences. As I listened to the results, I mentally checked off items of concern that I had heard from parents of children with disabilities over the years. The study confirmed for me what many family members and care providers have known for years: A child's disability does not just change how we care for a particular child, it also affects the entire family because of physical and attitudinal barriers in society.

Harris Interactive surveyed 1,652 parents of children who have an autism spectrum disorder and 917 parents of children without disabilities. Parents were questioned regarding the ongoing challenges their families face in the areas of daily life, relationships, independence, education, housing, finances, employment, and healthcare, as well as how they view their child's future. Some of the findings include:

- 14 percent of parents of children without disabilities think their child will be able to make their own life decisions, compared to 65 percent of parents of children with autism.

- 51 percent of parents of children without disabilities think their child will be able to have a spouse or life partner, compared to 9 percent of parents of children with autism.

- 60 percent of parents of children without disabilities are concerned about their child's future employment, compared to 76 percent of parents of children with autism.

- 32 percent of parents of children without disabilities believe their child will be living at home beyond age 18, compared to 79 percent of parents of children with autism.

- 42 percent of parents of children without disabilities believe their child will have healthcare that adequately covers their needs, compared to 18 percent of parents of children with autism.

By Cynthia A. Smith, MS, CAS, JD. Ms. Smith is CHADD's Public Policy Specialist.