May 17th, 2016 my daughter was diagnosed with Autism Spectrum Disorder (ASD). I am still in a bit of shock. She has had many dx’s along the way including but not limited to EDS3, DCD, SPD, APD, MERLD, Encephalopathy-nos, Dyslexia and allergies. She will be nine years old next month and I am feeling a mix of grief and relief as we all learn more about her and how she processes the world around her. I am frustrated that it has taken so long so nail down this diagnosis but at the same time as I learn about females with autism, I get it. It seems they are often missed. Females seem to be better at developing coping mechanisms to compensate for the differences in who they are and how they participate with others.
To be completely honest the hardest part about this diagnosis so far has been the lack of available services covered by our insurance and the amount of time it is taking everyone to get it together so we can get my daughter into appropriate therapies. The past three years have been so many therapies. Occupational therapy, physical therapy, speech and language therapy, vision therapy, all the therapies! I don’t think it’s all been for nothing. But I really feel like we were given an outdated diagnosis of MERLD and that coupled with the diagnostic criteria for ASD changing in 2013 means my kid finally has the right diagnosis. Now we wait some more until all the red tape and waiting is done. In the mean time I look online at diets, supplements, how to help my child, what is ABA, have I been doing it wrong all along dot com. I am trying not to get overwhelmed but I also feel like we’ve lost so much precious time. All of that early intervention that is so incredibly important? That ship has sailed. And now I am waiting for approxiamtely three weeks for a letter from my insurance company that will tell me whether they will approve the ABA therapy or not. After that three weeks, if the answer is yes, we get put on the waiting list for ABA therapy. The YEAR LONG waiting list. Which means my daughter could be ten years old before she ever receives any autism related services. This makes me want to set things on fire.