This post was written in May of 2013. It is a recount of the prior year as we attempted to find out why my daughter was having such a difficult time. When I read this I can recall the anger, confusion, and fear I felt. But there is so much distance between those emotions and how I feel now. Those feelings have been replaced with knowledge, understanding, and a sense of security. We have come a long way since then. She has been officially diagnosed with autism by a panel of experts (no anxiety or ADHD.) She is succeeding in ways we didn’t think were possible.
There is much to share about Finley’s story. This is the beginning.
Doctor number one witnessed Finley in the midst of an actual meltdown. Her take? Temperament or development related. In other words, she will grow out of it. Being a total newbie, I was elated. I made a happy face. Off to the interwebs I go to arm myself with knowledge. I screamed, à la The Incredibles, “Hey Honey! Where’s my super suit!?!” Sadly, nothing we learned helped. The super cape was hung out to dry.
Worried that things are getting worse, we saw doctor number two. After talking for ten minutes or so, she lobbed this beauty at us, “It seems like your daughter isn’t getting enough attention. Here are some community college parenting classes you can take.” What the heck? Did she just tell me I was a crap parent that needed to basically hug this out of my daughter? Is there a hidden camera in this room? Because I think I might be in my jammies, likely with lunch in my teeth, and I’m pretty sure that’s toilet paper stuck to my shoe. This isn’t how I want my 15 minutes of fame to go down folks. For those that don’t know me well, I “attached parented” the bajeebies out of Finley. There couldn’t be more attention and love given to this child. The doctor got my stink face. Needless to say I was thrilled a couple of weeks later when a survey landed in my mailbox asking my opinion of how well our recent visit went. If a pen could scream on paper, mine sure did.
We were beyond frustrated and confused. More doctors. More development questionnaires. We had homed in on autism or Aspergers, now called ASD, because parents with experience saw many similarities. The doctors told us it can’t be autism because it doesn’t seem like autism. Besides, she is too young. Keep in mind autism typically presents between 18 and 36 months. This all began when she was two. Now four years old, she struggles with the basics of potty learning and getting dressed can be incredibly hard for her. Preschool is a pipe dream.
By accident, Pinterest led me to the term Sensory Processing Disorder. Off to the doctors we go! Doctor number…I don’t know. We have seen them all. I lost count. But this one listened and sent us off to an occupational therapist. Right away the OT knew Finley had sensory problems. FINALLY! Get me my darn super suit; we are back in business. We have the answer! I made a happy face. And then she said she likely has autism and maybe ADHD and anxiety. I put on my confused face. And then my sad face. What??? Having been told a hundred times it couldn’t possibly be autism (and how in the world can you have all three of those at the same time in one sweet child?), I fought back. No. Just no. My inner geek is strong though. Back to the series of tubes for more research. Diving deeper into autism, it became clear. Completely heartbroken, my husband and I finally found the courage to utter the words. Our daughter is likely autistic. And might also have ADHD and anxiety.
In order for Finley to receive help in public school and for insurance purposes, we needed to have an official diagnosis. The OT could identify autism because of her experience working with autistic kids. But we needed a qualified psychologist to diagnose it. Armed with our referral to the doctor in-the-know (who confirmed she could diagnose autism), we plowed ahead. After filling out a telephone book-sized questionnaire and spilling my guts out in detail about what Finley was going through, my daughter was evaluated.
It was now time to hear the results. Pants-crapping nervous, I sat down with the doctor to be told what I already knew. Anxiety. ADHD. Autism. Check, check, and nope. Suddenly I found myself diving head first down a rabbit hole. We knew what this was. We had been told by someone who had been seeing Finley for months now. Everything we read pointed to the same thing. Autism. It fit. This is supposed to just be a formality! She said, “Your daughter has severe combined-type ADHD. And anxiety.” But instead of trying to find out why she has such strong rigidity, sensory, communication, and social issues (aka autism) she wants to just pretend that it’s because of ADHD. Then she tossed out a handful of autism myths and said, “I don’t think it is autism because she knows her name, pointed at something, and seems to love her sisters. We can give her a cocktail of meds. If those other issues go away then we know it isn’t autism. If they don’t, well we can talk more about that later. By the way, I’m not an expert on autism but I will refer you to someone who is.” Are you kidding me?!?! There isn’t enough profanity to describe my emotions in that moment. Quack!! That was all I had. A word bubble above my head with a raging duck yelling quack.
I don’t want Finley to have autism. I don’t want any of this for her. But I also cannot accept a diagnosis that ignores a huge part of her symptoms just because doctors aren’t knowledgable enough to identify autism. A diagnosis that will likely keep her from receiving the insurance coverage, schooling, and care she needs. Finley has definite rigidity and sensory issues. She also has difficulties with communication and socializing. If she is not autistic, great, I will accept that. I’m not self-deluded enough to think my internet sleuthing afforded me some magical PhD. I understand there is complexity in diagnosing something that cannot be quantifiably measured. But what I heard from that psychologist just didn’t make sense.
The doctor that knows Finley best, her OT, sees autism and I am inclined to trust her. I will continue to advocate for my daughter and seek answers that take everything into account. Finley deserves that. This is not the end.
Photo credit: Shayla Hearn