Organization Is Key
Start Your Financial Planning Early
It's a costly road ahead, and reviewing finances is an important and sobering thing to do. You'll need to learn what your insurance will or will not cover. State laws vary on insurance autism coverage (25 states have enacted autism insurance reform laws). In 2006, Michael Ganz, the Adjunct Assistant Professor of Society, Human Development, and Health at Harvard School of Public Health, led a study on the lifetime costs of caring for a person with autism, which appeared in the book Understanding Autism: From Basic Neuroscience to Treatment, edited by Steve Moldin and John Rubenstein. He found that it can cost about $3.2 million to care for a person with autism over her lifetime. In a Harvard School of Public Health press release, Ganz stated that the figure likely underestimates the true costs because alternative therapies can be paid out-of-pocket by families.
Often one parent takes on the brunt of care while the other one works, and one salary may not be enough to cover the expenses. Dr. Sadiq says, "I always tell my patients to secure an educational and medical model and get done the evaluations and tests that are covered by their insurance first. Nutrition is a simple and potent tool to start with. Some of the complex testing done using the biomedical model can be quite expensive and not all covered by insurance. This must be planned and done on a gradient. Parents must also avail themselves of the system and get what they're entitled to through the Board of Education." Most parents decide early on that they won't compromise on treatment because of costs, Goring says. As the years go by, the expenses pile up and the financial burden can be a huge strain. "In those early days, if you don't already have a handle on your income -- what's going in, what's going out -- you should. Start your financial planning early."
Get Organized and Keep Good Records
As parents of children with autism embark on treatment and therapies for their child, one of the most important things they can do is to keep accurate and organized records. "Over the years, as we got bogged down with progress and regression, it was often hard to see and remember what my son had learned, what he had accomplished, how far he had come, and what he still needed to learn," Goring remembers. "So we'd go back and watch the videos we made of him from certain points in his life to remind ourselves of how much he had accomplished versus how he was now." With evaluations from doctors and schools, educational records, detailed data from behavioral, medical, and biomedical therapies, and doctor's notes and recommendations, the vast amount of records and paperwork can bury parents.
Some parents organize their child's records within binders, year by year. Others create files grouped by subject: medical, educational, therapy, etc. Many autism organizations now advise scanning all documents and saving them in online file-sharing sites to reduce paper trails. "Figuring out a good organizational method early on is key," Goring says. "You need to hold on to pretty much everything because you need to be able to look back on what you have done, how you have paid for treatment, and what has and hasn't worked."
Always Remember to Ask for Help
Helping your child manage autism is a lifelong journey, and your child's best friend, advocate, and supporter from day one is you. "The analogy many parents of children with autism hear is that this is a marathon, not a sprint. And you will exhaust yourself. You need to pace yourself because this is for the rest of your life," says Goring. As important as it is to seek the best interventions and therapies when your child is still at a young age, it is also important to get help when you need it and look after your own health and well-being and that of other family members. "No one can run on empty and no one can do it alone. You are on the road to becoming an expert in autism and all its many facets. You are absorbing stress levels that can be detrimental to a marriage," Goring says.
Most parents of children with autism emphasize the need to decompress, take breaks, and ask for help. Dr. Sadiq recommends to many of her patients' families that they do whatever they can to keep the family healthy. "Join a support group, talk it out, get outside and take a walk, ask family members to give you some respite. Or look into what your state offers by way of respite services," she says. "Often, the parents I see leave my office thinking they have to go at this alone, and that is not the case. Everyone needs to ask for help. We all must put an emphasis on seeking happiness."
Dilshad D. Ali is a journalist and editor who has written about autism for Azizah Magazine and Beliefnet.com. She has advocated for autism insurance legislation in Virginia, where she is based.
Copyright © 2011 Meredith Corporation. Reviewed and updated 2013.
All content on this Web site, including medical opinion and any other health-related information, is for informational purposes only and should not be considered to be a specific diagnosis or treatment plan for any individual situation. Use of this site and the information contained herein does not create a doctor-patient relationship. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.