Recently we participated in a conference supported by Easter Seals Disability Services / Act for Autism and made possible by Mass Mutual Financial Group and conducted in cooperation with Autism Society of America about "Living with Autism Study". The main objectives of this conference were to identify lifetime challenges for people with autism, identify financial needs for families with special needs, assist providers in their roles and support schools to work transitions, supporting employment, residential, and community support and among other areas.
The Easter Seals study took a sample of 2569 parents, 917 with children age 30 or younger without any special needs and 1652 parents with children age 30 or younger with Autism Spectrum Disorders (ASD). Data were collected online in a survey format during June 16 to July 17 2008.
This study revealed that 83% of children with ASD were male in contrast with 17% of female. 82% of the children were between 4 to 18 years of age, which 36% were between 7-12 years of age. Forty-nine percent the children were diagnosed by a pediatrician or a psychologist and the diagnosis happened 46% between 3-5 years of age. Thirty percent had a total household income below $49,999.00. The ethnicity of the parents was predominantly white (81%) followed by 8% Hispanic and 5% black/African-American. Fifty-nine percent of the primary residence was in the suburban area, 20% in rural and 18% in urban areas.
According to the different diagnosis, 53% of the Autism Spectrum Disorders children were diagnosed with autistic disorder, 24% with Pervasive Developmental Disorder, Not Otherwise Specified(PDD, NOS), 18% with Asperger's disorder and 5% with Rett's disorder, Childhood Disintegrative Disorder, or not sure.
When the study compared the parents of children with Autism Spectrum Disorders with children with no special needs, this study found that parents with children with ASD are more concerned about their children's independence, financial well being, quality of life and employment by a big margin, where independence and quality of life were a top concerns. Employment ranked as the 4th highest concern.
When the survey compared children with Autism Spectrum Disorders (ASD) with children with no special needs, 75% of children with no special needs are looking for a job or are working in contrast with 69% of autistic children, 64% PPD, NOS and 37% of Asperger's who are not looking for employment.
Parents for children with Autism Spectrum Disorders (ASD) are concerned with their children's housing needs. Children with ASD live with their parents in 96% of the time versus 69% of children with no special needs live independently. It is more likely that children with ASD will continue to be living at their parents' house or in a residential program.
Regarding to obtaining health care, parents with children with Autism Spectrum Disorders (ASD) have more difficulty to obtaining health support than typical parents.
The most common types of government assistance that children with ASD received are special education and Medicaid. Parents living with ASD are significantly more likely than typical parents to have incurred debt to meet their families' needs and they have stronger financial concerns for their families than typical parents.
Regarding education, this survey found that parents with children with ASD are much more concerned that their children receive adequate education for life. Children with Asperger's are more likely than others their age with ASD to have completed some college level.
"Living with Autism Study" is proving new insights to offer hope for families with people with Autism Spectrum Disorders (ASD) and a road map for financial planning, future education and related services. Families with people with autism are extremely anxious and concerned about the uncertain future of their children. However, the best way to help families with children with autism is to help them to develop a guide to identify the immediate and long terms needs, according to a proper diagnosis, and find the right service organizations. The families need to get support from family networks, special education related services, the waiver - home and community based waiver services and family support services.
The relevance of this study is that it suggests a change in the traditional perspective associated with autism. Service organizations need to allocate more resources in the area of parent's education, social acceptance and improving employment opportunities for individuals with disabilities. The historical idea, which considered autism incompatible with employment, is changing and supported employment has increased (Sower, 1995). Supported employment means to provide people with mental disabilities or severe mental illness with direct placement in jobs in competitive, real-world settings in which individuals are working toward competitive work, consistent with the strengths, resources, priorities, concerns, abilities, capabilities, interests, and informed choice of the individuals (Bond, 2001). At Quality Services for the Autism Community (QSAC) we are working to develop and implement innovative projects in several service areas.
Applied Behavioral Analysis (ABA) has helped to minimize problem behaviors and lack of productivity associated with autism (Storey, Lengyel & Pruzzynski, 1997). Some studies have suggested that adults with autism are able to achieve and maintain employment through supported employment programs. Individuals with autism seem to work better in supported employment through the "individual placement model". This model provide individualized job match and job adaptation procedures which analyze the effect and function of problem behaviors on job performance (e.g. self-injurious behaviors, physical aggression and property destruction) associated with the autism (Smith & Philippen, 1999). The lack of serious functional analysis on the job might be an obstacle for a supported employment program.
The Easter Seals study is calling the public's attention that issues like education, choice, continued inclusion efforts, employment and social acceptance represent a tremendous impact in the immediate future for service organizations of individuals with Autism Spectrum Disorders (ASD).
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