A parent shares her family’s diagnosis journey
The journey to my son’s autism diagnosis involved what felt like thousands of phone calls, mountains of paperwork, and six weeks of observation. After diagnosis, community was key and information gave me power.
It started with a call from school
When my son was 3, his preschool teacher called to let me know that he wasn’t participating in group time. While other kids were sitting criss-cross applesauce in the reading nook, my son was standing on bookshelves and shouting lyrics from songs by the Ramones. Or he was hiding in the corner. Or playing a game of chase.
His differences in behavior resulted in a conversation with the school, that I now look back on as “that conversation” — the one that changed our family’s life.
The school’s language was contradictory. Their words lived in a fuzzy place between disclaimers that they weren’t experts, and insistence that there was something glaringly different about my son. My immediate reaction was denial — I insisted he wasn’t autistic, and that I was done talking about it.
Navigating the maze of diagnosis
The more I talked with the people in my life, the more I realized I needed to figure out what was going on. I decided to take the next steps towards finding a diagnosis — but I didn’t realize how challenging that process would be.
I said, “Okay here we go! Let’s do it, let’s get that diagnostic evaluation!” And… six months later, after what felt like thousands of phone calls, pillow-crying sessions, and shocked expressions at the price of private pay services, I finally scheduled an evaluation. Huzzah!
And the testing process itself wasn’t simple. After six weeks of observation, filling out endless forms about whether my child lines up toy cars or makes them go vroom, we had our $4,000 answer. My son was autistic. And literally the most anticlimactic thing happened in that doctor’s office. I expected this to be an answer, but it turned out to be the beginning of my questions. I was handed a single piece of paper with a list of generic websites and sent home.
My child is autistic, now what?
At home I sat down at my computer and Googled, “My child is autistic, now what?” In response, I got an avalanche of information that I had no idea how to sift through or understand: Occupational therapy, Music Therapy, Speech Therapy, Somatic therapy, ABA, Social Groups, IEP, 504, Regional Centers… It went on and on.
Because I’m a good detective with a knack for research, I was able to finalize the list of services he needed and figure out how to plan action steps. But immediately after his diagnosis, no one helped me deeply understand what was happening. I had so many questions, and very few answers: What is Autism? Like really, what is it? Do we solve it? Do we support it? Do we try to make it go away? What’s my goal for my son? Not just the plan to make his fingers stronger in OT, but what might our future look like? And what does the diagnosis mean for my family? How am I supposed to do everything I need to do while working full time and navigating my son’s erratic and sometimes violent behavior? The more I asked these questions, I realized that practitioners were not ready with answers, and it wasn’t part of the protocol to discuss what parents might need after a diagnosis.
My son is also a Type 1 diabetic which means he has to have insulin and sugar everyday or he will die. When I compared my experiences in the months following both his diabetes and autism diagnoses, the differences were stark. With his diabetes diagnosis, the message was clear. The endocrinologists and the experts are needed and essential; but what you and your family really needs is other families whose kids are type 1. So I began to have conversations with parents, colleagues, people in waiting rooms, and online forums. It was those conversations that allowed me to understand how to think, what to ask for, and how to advocate for him in this new world of chronic illness. Yes, insulin ratios are important, but what keeps us thriving as a family is being grounded in community and enveloped in its wisdom.
So I applied these lessons to our autism diagnosis. I asked every parent and expert I could all of my questions about autism. I started building my own community — of experts and other families — and things fell into place. When I understood why he was angry at home, I became so much stronger in my ability to make empowered and informed choices. I understood what he needed most. There are still challenges. My community’s pool of knowledge has its own uncertainties and provocations, but I’m forever grateful for type 1 diabetes for helping me understand that a diagnosis isn’t just a call for services. It’s an identity, a community, and a call for support. It’s a position of strength and resilience as well as a vulnerability. So even though a diagnosis of autism is a singular thing, autism itself is not. It’s complicated and beautiful and isolating and challenging and awe-inspiring. My son is not living with autism as a problem to be solved, he is living, being alive and being autistic.
