Tips On Managing The Personal and Financial Costs of Autism

Every child on the autism spectrum will have to to deal with the reality of their disorder for the rest of their lives. But in the early days, months and years of their lives, they don’t have the self-awareness to understand the implications of autism, personally and financially.

“A recent national U.S. study reported that 40% of families of children with special health care needs experience a financial burden due to their child's condition.” (Source)

Parents who have an autistic child are all too well acquainted with the realities they are currently and will continue to face, with their child. However, information is power and learning how others have coped is so helpful. You can benefit from their experiences, rather than reinventing the wheel!

The impacts of autism

From a financial point of view, therapies and alternative learning programs, as well as all the tools to enable these can create a tremendous burden for a family. Behavior therapy, for example, can run to tens of thousands of dollars a year, and then there are the medical issues that are associated with ASD. For example, some children are affected by seizures, the medication for which is very costly. There is also the cost of care: depending on the level on the spectrum that your child is on, you might need specialized or individualized care, that standard day care / child care resources can’t provide.

Very often, a child with severe autism requires at least one parent to be home with them most of the time, resulting in a net loss of financial resources for the whole family, if both parents were previously working. Even if working is possible, there is income lost in time taken for therapy and other appointments. The impact to a single parent home is even more important.

From a personal perspective, caring for a child with ASD is more challenging, more stressful and harder on all the relationships in the family. It takes more effort to keep up with your child’s needs and still meet the needs of others, such as your spouse or other children. But on the upside, the divorce rate for parents with autistic children is NOT significantly higher than for other parents. So yes, there is more stress but, no, that doesn’t mean doom and gloom!

8 tips for parents who are dealing with a new diagnosis

  1. Take it one day at a time! You can’t deal with this disorder by trying to tackle it head on. You have to take it on, one issue or problem at a time. Otherwise, it’s overwhelming and even the strongest back will fold under that kind of pressure.

  2. Talk to other parents with ASD kids. Whether in person or in closed groups on Facebook or other platforms, talking to parents who have been where you are now is tremendously helpful. They can steer you away from mistakes that they made and simply provide the emotional support that you need.

  3. Don’t Google everything. Yes, information is power, but misinformation is a source of misery! Work with your medical team to find the resources that you can rely on when you have a question and avoid the temptation to Google everything that comes up!

  4. Not every therapy will work. Every case of autism is different; every child is different. So while a therapy or technique might work for one family, it might not work for yours. Don’t despair if that’s the case! You can’t hit it out of the ballpark every single time!

  5. Getting gifts? If your family or friends asks what they can get your child for their birthday, don’t be afraid to ask for what you need for them. Is it money for the therapy they need? Is it a gift card for a store that sells occupational therapy tools you need for them? Don’t hesitate!

  6. Try everything once. Even if a therapy or a diet or other suggestion seems ridiculous to you, don’t be afraid to try it! Again, every child is different and you might be surprised at what works to ensure that your child eats properly, sleeps well and begins learning.

  7. Go out with your child. As they age and their behavioral manifestations become stronger, you might be tempted to hide out at home. Don’t! These are important lessons in life that you are sharing with your child and as you don’t know how their autism will develop or change over time, you need to stay one step ahead, always.

  8. Don’t be shy about needing a break. It’s not selfish or wrong to want some time to yourself or with your spouse or other kids. It’s not selfish to want to keep your equilibrium! Think of respite care as an investment in your life. You deserve to have one!

If you have any questions about respite care or what services are available to help you and your family, please get in touch with us! We’re happy to help!

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