This guest blog post kicks off a new series written by my friend and colleague – Dr. Dan E. Burns. Dan’s series will address many of the challenges faced by families with adult children living with Autism Spectrum Disorders. In this first post, Dan breaks down and describes many of the ways families can go about “Funding Autism for Life” with pertinent suggestions and ideas for parents with younger children as well. I know you’re going to learn a lot and enjoy Dan’s guest series. Please help me welcome Dan!
Funding Autism for Life: A Map to Treasure Island
By Dan E. Burns
“It’s autism. There is no medical treatment. Let the schools take care of him and save your money for his institutionalization when he turns 21.” Those were the final, chilling words Ben’s pediatric neurologist spoke to me on Pearl Harbor Day, December 7, 1990. Ben was three years, four months old.
I declared war. With an ABA manual in one hand and biomedical primer in the other, I fought for Ben’s future. But as the months and years went by and the hope for a full recovery dimmed, I had to admit that his pediatrician was right. Where would Ben live, work, and find friends after the school bus stopped coming?

Life is full of twists and turns. As kids we learn to “roll with the punches” and as adults we must handle the unexpected in life as best as we can. Raising children, especially those with ASD, we adults have the responsibility of modeling what it looks like to be flexible and handle the “curveballs” the game of life throws us - with grace and dignity. But, it isn’t always easy, is it?
Saturday evening Greg, Ethan and I arrived home from a two-week vacation out West to visit family, dig our feet in the sands of the Pacific Ocean and experience all that Disneyland and LEGOLAND have to offer. Our trip was phenomenal! Staying with family not only made our trip fiscally possible, but it was such a joy to see cousins, aunts and uncles we rarely get to see. But I’ll write more about the amazing trip in future blog posts…for now I want to share about coming home to find our Master Bedroom ½ flooded thanks to a cracked plastic connection for the toilet supply line.

In May, I posted some of my favorite quotes about motherhood and how I’ve come to see motherhood with a vastly different perspective in the years since Ethan was diagnosed with an Autism Spectrum Disorder, in my post Mother Love. I thought it would be fun to put together a similar post for Father’s Day, because I can guarantee that my husband now views “fatherhood” differently than before, too.
Let’s start with a little humor…
A father carries pictures where his money used to be. ~Author Unknown
Now this one made me Laugh Out Loud! My instinct tells me that the phrase was probably written by someone raising a typical child or teenager with standard needs and expenses. But, raising a child with ASD is exponentially more expensive! I know many parents who have sold their homes, emptied savings and college accounts, used up retirement savings and still went into debt to pay for necessary therapies, interventions, special diets and treatments. While this isn’t funny – in the least – it is humorous (I think) in the sense that I stumbled across this quote and thought to myself, “Awww, sweet Mr. ‘Author Unknown’ probably doesn’t know the half of it!”
But in all seriousness, “fatherhood” is much, much more than a fat wallet or a hefty paycheck.

I don’t know about you, but even though I’m a pretty positive person, I have to admit that sometimes the “pressure” really gets to me.
Raising children is pressure-filled business. Raising children with special needs makes life feel like a pressure-cooker some days. There’s so much to worry about…money, therapy, school, socialization, special foods, chemicals, extracurricular activities, the future…the worries really are limitless.
Lately when I’m not worrying about money (which is most days), I’m worried about which therapy, treatment or intervention comes next.