In this episode, Adam faces the very real consequences of the current recession when he has to lay people off at work. This is painful for him, since he personally knows all the problems his employees face at home. Their family struggles mirror the ones he and his family experience at home and are encountered across our country today as many employers and families face the hard choices posed by lost jobs and lost income. This stresses all families - those with and those without children with disabilities - which means that it also, of course, stresses thousands of families that have children with autism spectrum disorders.
However, the costs of caring for a child with an autism spectrum disorder can be even more staggering for parents already coping with the emotional problems and feelings of isolation that the disability brings - even if their jobs are not in jeopardy. Essential, highly specialized, and expensive therapies like constant behavioral treatment and medication monitoring, the costs for social skills groups, play dates, lost wages due to frequent school and doctor appointments, and perhaps family counseling and the need for 24/7 supervision of their child (even for trips to the grocery store) all take their toll on the family's checkbook. And yet, many insurance companies do not cover the specialized therapies and supports as written in their policy's fine print that a child with autism requires in order to progress and learn. If we look at the cost of a lifetime of support for an individual with autism spectrum then the price increases to an alarming rate. One study (Ganz, ML The lifetime distribution of the incremental societal costs of autism, Arch Pediatr Adolesc Med. 2007 Apr;161(4):343-9) estimates that the lifetime costs to society for one individual with autism is $3.2 million. How can any family cope with that staggering figure?
As a young child and as someone with Asperger's Disorder, Max cannot appreciate the financial commitment that Adam and Kristina have made by contracting for his daily treatment; he only knows that Gabby comes to his house to work with him every day. But the cost of this type of treatment can be more than $60,000 a year, an amount that many parents simply can't afford. Research has shown that early intervention for children with autism spectrum is critical, forcing parents to search frantically for treatment options and for financial assistance to cover the costs. But if there aren't any resources or financial support available, what can parents of children with autism do?
Parents of a child with autism spectrum disorder should start by contacting their state's Social Security Administration office to learn of Medicaid options and any local area funding by agencies or foundations. In many cases assistance can be found, but it must be pursued vigorously. Parents can also attend an Autism Society of America support group to discuss local resources. The child's teacher may also be a valuable source for information, and might suggest ways to extend the effectiveness of their teaching strategies across settings into the home, helping the child to further his progress and learning. Children with autism spectrum disorders do progress and do learn, but they need encouragement and assistance from others - not just emotionally, but financially, as well.
As a friend, neighbor, or relative you can also be part of the solution: Contact families in your community with children in the autism spectrum to see how you can help. Volunteer to walk to raise funds for the ASA or Autism Speaks, talk to the local library and work to increase the quality and quantity of books and resources on their shelves, introduce them to a physician who understands this disorder, help them understand the confusing maze of public assistance. Learn behavioral strategies yourself and offer to be a babysitter so mom and dad can go on a "date night" alone, without children. If nothing else, lend an ear to help alleviate the stress and isolation felt by the parents of a child with autism. Be the first to jump in to help. This child with autism can be a contributor to society, but needs help and support from everyone - including you.
Written by Sheila Wagner, M.Ed.
Resources:
Autism Society of America (Find a Local Chapter/Support Group)
http://www.autism-society.org/site/PageServer?pagename=community_chapters
Individuals with an Autism Spectrum Disorders have average medical expenditures that exceed those without an ASD. Learn more statistics about Autism Spectrum Disorders and the resources available at http://www.cdc.gov/ncbddd/autism/data.html
