THE AUTISM HELPBOOK
by author Sarah Carrasco
It has been 12 years since my son received a diagnosis of autism. I have now learned how to navigate systems of care, private insurance, Medicaid waivers, CCBs, and special education law. I also spent years researching biomedical interventions and therapy options, as well as learned how the American's with Disabilities Act can benefit David.
With the years I spent doing research, I realized that I wasted time which I could have focused on early interventions for my son. This inspired me to write my own book, The Autism Helpbook.
Its purpose is to save parents time and energy so they can hit the ground running and get their child the resources and therapies they need early on.
My Story of Grief and Acceptance
I remember sitting in my car after working a long, difficult day. I was stuck in traffic in my beat-up 1996 Honda Accord. The air conditioner struggled to churn out semi-cooled air and the car’s radio worked only in between bumps in the road. I was hot, stressed, and plagued with worry for my son who has autism.
I was also angry. I was angry that my son suffered with what was described as “worst-case scenario for autism.” I was angry that my marriage fell apart despite my best efforts to save it. I was angry that I didn’t have babysitters. I was angry that people stared at us in public. I was angry that we had no money. I was angry about everything.
As I felt myself being consumed by anger, I forced myself to think of three positive things: one, my son David was improving every day. He was no longer violent. He was communicating with word cards and was making eye contact.
Two, after having been denied for Supplemental Security Income from the Social Security Administration (SSI) twice, a fellow autism parent explained to me how to get approved. Now, I could afford more out-of-pocket treatments that were sure to help my son.
Three, I had read an article entitled, “Daniel’s Success Story: A Determined Mother Demonstrates that Full Recovery from Autism Is Possible,” and because of that determined mother, I was starting to get my son back.
These three things helped me ease out of my bad mood. I also realized that I had support from other autism parents. Those brave mothers and fathers who came before me were my greatest asset.
As I simmered down, I lifted my head and looked up at the Subaru that stopped at the red light in front of me. It was a beautiful sunny day. The sun shone down on the car ahead of me, and the light refracted in rainbow rays. It was so unusual that I was taken aback.
To this day, I have never again seen sunbeams so distinctly brilliant as at that moment. As I marveled at the beauty of the sun’s rays, I looked down at the car’s bumper sticker. It read, “Be the change you want to see in the world.” In an instant, my anger and self-pity dissolved.
In that pivotal moment, I realized that because an autism dad took time out of his day to help me get David approved for SSI (which we desperately needed for his care), David would soon have the insurance he needed for his medical care.
It occurred to me that my son’s violent behavior had disappeared because an autism mom took time out of her day to write an article that would change the course of our lives.
That moment changed how I saw my life with autism. My perspective was changed by something as simple as a bumper sticker. My life didn’t have to be all doom and gloom; I could choose to find the silver lining. I could be bitter and angry, or I could be the change I wanted to see in the world.
In that moment, I decided that I, too, would help other families affected by autism. Life with autism can be hard, but what if I could make it just a little bit easier for families? What if I wrote a guide book for parents who have a child with autism? I would help them with resources, insurance, disability law, special education services, therapy options, special diets, and biomedical interventions.
I could be the person I wished I had had with me on my worst days. I could be other autism parents’ faraway best friend. I would walk them through the dynamics of changing relationships in the face of an autism diagnosis. I would tell them that it is okay and often necessary to grieve. I would tell them how to pick up the pieces of their lives and make them whole again. I would be the mentor I had so desperately needed.